tag:blogger.com,1999:blog-64191887296560494502024-02-20T00:38:25.399-07:00Multiple Sclerosis and FaithA blog about my life: having multiple sclerosis, having a disability, my faith journey, and the interplay of these and other things.
Statement: These are my personal viewpoints and are not to reflect anything other than my personal opinions.ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.comBlogger410125tag:blogger.com,1999:blog-6419188729656049450.post-89000872211560943222024-02-11T06:43:00.006-07:002024-02-11T06:53:13.698-07:0031 Years<p>31 years ago today I was diagnosed with probable MS. That is the context for the following... it has been a roller coaster ride, but the past year has been one I never expected but continued to dream would happen. </p><p>A big part of my improving in mobility and stamina has been in my skiing. Last February (2023) I started skiing standing up without having a tether attached to my skis (it’s like taking the training wheels off a bike). This past week, for the first time I felt a calm come over me as I skied, so I felt comfortable going faster and faster (I didn’t feel like each bump on the snow was going to cause me to lose my balance and hit the ground), turning with ease, and stopping quickly if needed. I smoothly navigated around other people on the slope, passing quite a few of them. And I wondered, this new feeling, which lacked the jerking of my legs I felt in the past - is that how other people feel when they are comfortable skiing? Is that what "natural" feels like? It's wonderful.</p><p>Extending that to walking, I know that people walk without concentrating on how their legs might move without jerking or dragging, where they place their feet with each step, what distance they can walk before starting to trip over nothing and stiffen like a short-circuited robot, and so on. I wonder, in my journey, how close I can get to "natural" walking, that I assume would come with a sense of calm. I do remember the years when I walked without having to concentrate on each step. I’d like that back.</p><p>While skiing this past week, I looked up as I made my way down the slope. The mountains were so beautiful - the snow covered them like a blanket. The sun hit the blanketed snow and brightened the scenery. I smiled through a few very emotionally-generated tears, thinking how grateful I was to be surrounded by such beauty, to feel at one with my own body after so many years, and to feel my body's connection to the ground. This amazing experience is the "PS" or “Coda” to the skiing story I told last summer.</p><p>Here's the story. It's what I told an incredible group of people who listened, thought, and laughed with me as I talked about my skiing journey, at a dinner this past summer.. and I finally wrote it out here:</p><p>I entered the Breckenridge Outdoor Education Center (BOEC) for the first time when I was 26 years old, and that was after about 9 years of having symptoms like loss of feeling, weakness, numbness in my legs, numbness in my hands, and when I was 20 years old, I was diagnosed with possible multiple sclerosis (MS). So at age 26, I entered the BOEC and I was still walking and I wasn't using any mobility devices. We thought that stand up skiing would really work for me. I had never skied before, and so we got all that we needed and we went up to the magic carpet (learn to ski area), and I stood there...... and it just did not feel right..... and then I started to move..... and it still just didn't feel right. And so after I would guess an hour trying this, my ski instructor, who was an intern, said to me, "Well Beth, you can continue to learn to stand ski, and we might get you up to Silverthorne (ski slope) by the end of your time here. Or, you can choose to go back to the ski office, and we can have you try the bi-ski and you can sit ski, and then we can have you go up to the top of Silverthorne right away." </p><p>And so in that moment, I could either choose frustration, which was actually 9 years of frustration, not just that one hour, or I could choose to go up and try to be an athlete again. And so I chose the bi-ski. We went right to the top of Silverthorne, and for the rest of my time that trip, I continued to go down Silverthorne.</p><p>Four takeaways from me for this were: first I had the glimpse of the athlete who I defined myself as before MS; second I got to be outside, I love to be outside; third, I got to be with people (glad you are all here tonight); and fourth, when I was a competitive runner, I really enjoyed passing people, so I got to pass people again, and that was the greatest part. (Insert laughter)</p><p>How is the BOEC changing my life? It changed it in that one day and I continued to come back. The great thing that the instructors do is they pivot quickly: pivot from frustration to possibility, and they do it in a positive way. There was none of: "well, you can't do this and so we suppose you're going to have to do that." There was: "instead of doing this why don't you do this other thing because it makes a whole lot more sense to you wanting to be an athlete."</p><p>For many years I continued to come back to the BOEC and during that time, my health declined for about 12 years. And then a strange thing happened: I started on a medication that isn't supposed to help much, and it doesn't help many people, but it has changed my life, because back then I was using a wheelchair which was totally fine; I could hardly write (my hands didn't work). There were a lot of things I couldn't do. I was frequently exhausted and life was not easy. But this medication has changed my life and I think it is only fair because all the other medications that work for other people did not work for me. So I started standing again, walking again, and about halfway through this time of learning to walk again... Jeff might not remember this, but I said to Jeff, "Hey Jeff, I want to try stand skiing again." And Jeff said "OK Beth, you can try that." (laughter)</p><p>This became an unplanned, unpredictable, 3-phases approach. It started with ski legs (phase 1), which are a frame that can be adjusted so you don't have to move at all so I felt like I was inside a bubble going down the ski slope. That was successful. And I should say that what I had been wondering in the process of doing this was, the feeling that I had when I first started to stand ski, what was that? Can I get past that? I didn't have that feeling when I used the ski legs, and so I still wanted to challenge myself and experiment a little more... and so I said to Jeff, "Hey Jeff, Do you think I could try stand skiing, but with the outriggers, like I used to, try to do?" And Jeff said, "Sure Beth, you can try that." (laughter)</p><p>And so the next year (phase 2) I went up with outriggers, being tethered, and I stood at the top of Silverthorne. And I felt that old feeling, but I could finally understand what that feeling was. It was the feeling of not understanding where I was in space, where my legs were relation to the ground. So my skiing instructor would have to call out the turns for me, and then they'd say "That was a great turn, Beth!!" And I would think, well that's great, but I can't feel that, I have no idea what I just did, but ok, I am stand skiing.</p><p>Fast forward to January of 2023. Phase 3. We went up to the top of Silverthorne with the outriggers, and I stood there, and this amazing thing happened. I felt where I was in space. And I felt where my legs were in relation to the ground. And when my instructor called out the turns, I could feel turning, and I could feel how that felt in relation to the ground. And that was the most amazing feeling to me.</p><p>And so my instructor, JR, at the end of that skiing lesson, where I had skied a lot better because I could feel what I was doing, he said to me, "You know Beth, I think your next step here is to try to ski without being tethered.” And this is a little bit of a joke.... you see, people know that I love to be tethered - it's my emergency brake...... (laughter) But I said "OK, fine, we'll try that."</p><p>My next ski lesson was with Nick, and so I told Nick that this was what we were going to do, we were going to try to have me do the stand ski thing without the tether. And as we were riding up on the lift, he said to me "You know Beth, we wouldn't be having this conversation a year ago." And I said "I know, you're right, it's really strange isn't it, but cool? But, how are we going to get me down this slope without the tether?" (laughter) And he said "well, here's what we're going to do..." and it's this pivoting continually that the BOEC instructors do... he said "I'm going to go out in front of you, and I'm going to ski backwards." And so I said "so you want me to tell you when there are people in your way?" (joke - laughter) Nick: "I'm going to ski backward and you're going to follow the way that I go."</p><p>So at the top of Silverthorne, I felt where my legs were in relation to the ground and all that. And then Nick went out in front of me and I followed him, down the top part of Silverthorne. And that's somewhat where I ended the year. I did more things too. The BOEC has meant so much to me because throughout this whole time, I don't have a condition that stays the same. It's getting worse, it's getting better, it's this up and down, and the BOEC has been an organization that has pivoted all the time, with whatever I needed. I do joke with some people in the BOEC office that if there's a competition on who's used the most equipment there, I win. (laughter)</p><p>To just wrap this up, the BOEC has been such a positive organization that never dwells on oh, you're doing worse. Instead, they say ok, we're going to make an accommodation here, and then you're going to continue being an athlete, and let's just go out and ski.</p><p>Thank you so much for having me here. I hope that you all get from this how much the BOEC means to me, and I'm not, of course, the only one, but it's been such an important part of my life over the past 20 plus years. Thank you very much.</p><p>(Go to the top of the post to re-read the Coda. Note that Nick’s comment in 2024 is that things are different, in a good way, this year. He never thought I would ski faster.)</p><p>Peace.</p>ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-24545969903108825712023-04-15T07:54:00.003-06:002023-04-15T11:55:19.105-06:002023 MS Walk<p>Denver's MS Walk is May 6, and I plan to walk the walk this year by myself - meaning without my wheelchair, my walker, my Bioness devices, my walking braces, or either of my walking sticks. It'll be just me out there this year. I'm really excited about this. I am also truly grateful for all the people who have supported me in the MS Walk, over so many years, in whatever way possible. And I'm asking again, will you support this cause once again, knowing that money raised through the MS Walk funds things like research into the medication that has helped me walk again? You now know, by seeing and reading my story, that lives are indeed changed through the funds raised by this walk. Here is the link to sponsor me in the walk this year: <a href="https://mssociety.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=225426" target="_blank">https://mssociety.donordrive.com/index.cfm?fuseaction=donate.participant&participantID=225426</a></p><p style="background: white;"><span style="font-family: inherit;">(<b>Note:</b> site is a bit tricky this year: Directions!! Click
on the big orange “Donate” button, then choose an amount, or choose “OTHER” for
a custom amount, then scroll past the “Payment” section and the credit
card/PayPal boxes and fill everything that has a red asterisk (like name), then
keep scrolling to the very bottom, and click on the box “Donate with credit
card” – Please let me know if you have any questions!!)</span><b style="color: #5d5d5d; font-family: Arial, sans-serif;"><o:p></o:p></b></p><p>If I were ranking my favorite years of my life, this past year would be one of my top years. After being told that I probably have MS when I was 20, after losing the ability to walk over the course of 18 years, who would have thought I would walk again? Who would have thought that in the 12 years in which my mobility has improved, that gradually I would stop using my wheelchair, my walker, etc.? All of those things were part of me continuing to live a happy and full life, and this is a new phase of life for me. It has been a year of firsts.</p><p>What exactly happened over the past few years to get me to this point? During Covid, physical therapy closed. Searching for some kind of replacement, I turned to swimming. I could sign up to swim at our local rec center, for 45 minutes, at 5am, when only 1 person was allowed per lane at a time. I noticed I could swim without needing a pull buoy to hold up my hips. I re-learned the flip turns I loved to do as a kid. I kept swimming. My core muscle strength improved exponentially.</p><p>Fast forward to this past October. I was doing a wellness challenge for work, where we logged exercise every day, for the whole month. I was walking using a hiking stick, but I tried to hold it in the air and started calling it my emergency brake instead of a hiking stick. My physical therapist (PT) remarked "I wonder if someday, (insert long pause), I just wonder.... if someday you will walk in here without any hiking sticks.... like in 6 months from now." Challenge accepted!! But why aim for 6 months when my next appointment was in just 2 months? He was a bit surprised when, 2 months later, I walked into my appointment with no sticks.</p><p>As I have learned to walk again, I have been amazed by my random discoveries, realizations, feelings, learnings, perceptions, etc. </p><p></p><ul style="text-align: left;"><li>I've discovered that when I stand and balance on both feet with my eyes closed (one of my exercises), that focusing on the feeling on the bottoms of my feet allows me to stand without swaying too much. </li><li>In general, I now feel where I am in space - I cannot adequately describe this except to say I didn't feel where I was in space until this past October. </li><li>I've learned, when going up or down stairs, that my tendency to want or need to grab a railing is because I lean too far to the side with my body, instead of keeping my body straight and using my legs. </li><li>The same thing can be said for walking - if my body goes too far to one side, I'm swaying to that side; if I work with this extra leaning when it happens, instead of fighting it, I'm generally able to correct the sway.</li><li>A big perception I have had when walking is that successful walking means keeping my eyes focused ahead and not looking to the sides. If there are unexpected sounds when I am walking, my legs tend to tense up and my knees often lock. My knees also want to lock the further I walk. Walking, for me, means thinking of moving each leg forward in the same way, left and right, landing each foot on the ground in a way that allows continued forward movement while not allowing my body to lean too far forward. All of this takes a lot of brain power!!</li></ul><p></p><p>It's not only walking that has changed for me this year. My mom and I went to our local mall where I successfully navigated an escalator. This was exciting - when Dave and I visited Lori in Boston, I had a lot of fun trying to find escalators.</p><p>I'm going to list other things from this past year that are new to me at the end of this - things I did for the first time in probably 30 years. Otherwise this entry might turn into a book. But it has been a great year. And I am truly grateful.</p><p>Again, here's the link to donate: <a href="https://mssociety.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=225426" target="_blank">https://mssociety.donordrive.com/index.cfm?fuseaction=donate.participant&participantID=225426 </a> (see above for directions)</p><p>Thanks for your support over many years!!</p><p>Peace and Love, Beth</p><p><br /></p><p><b>Beth's Momentous Firsts:</b></p><p></p><ul style="text-align: left;"><li>Escalators! First time up and down an escalator (first in Denver, then in Boston)</li><li>Hawaii! First time walking on a beach, into and out of the water, without Bart</li><li>Bye Bye Bart! First trip without Bart the walker (Boston)</li><li>Bart! Currently has gone into retirement in our basement</li><li>Track! 400, 800, mile on the outdoor track, no sticks</li><li>Steps! Up/down 1, 2, 3, and 4 steps without touching a railing</li><li>Home! Walking with and without holding cats, without leaning on walls, counters, no sticks</li><li>Standing! With eyes closed, no sticks: 1 min; eyes open left foot only 30+ sec, right foot only 30 sec</li><li>Choir! Standing for a choir concert</li><li>Church! Processing into church with our church choir, walking up to read the lesson, no sticks</li><li>Skiing! Off tether when stand up skiing, got on the lift myself, got off the lift with some help</li><li>Hiking! Rocky Mountain National Park, Golden Gate State Park, Castle Rock, Bluffs </li><li>Neighborhood! 1 mile, left sticks at home</li></ul><p></p><div><br /></div><p><br /></p>ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-59425341945646835752022-12-20T18:44:00.002-07:002022-12-20T18:44:41.821-07:00Full Circle <div style="text-align: left;">My hands <br /><br /></div><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><div style="text-align: left;">Have served me well</div></blockquote><p><br /></p><p>My hands</p><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Found their way over piano and flute keys to make beautiful music</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Brought music into my soul</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Left those keys when there was an unexplained loss of feeling in my fingers </p></blockquote><p><br /></p><p>My hands </p><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Carried coffee cups through parking lots, into work</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Reached out and steadied me by touching walls when I lost my balance or tripped</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Held a walking stick to steady me instead of holding a coffee cup... the day I realized I needed a new way to walk into work, without a coffee cup</p></blockquote><p><br /></p><p>My hands</p><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Pushed a baby stroller when my daughter was young, as a way to transport her safely while I walked</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Gripped a walker and pushed on the walker’s brakes when I needed more balance than one walking stick could give me, and to transport my very young daughter who liked to get a ride</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Learned how to transport me via wheelchair when a wheelchair became the beautiful way I could live my life, including with my daughter sitting on my lap</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Continued to grip walker handles, sometimes only for a few steps and many times when it was more about holding my body up than about giving me balance</p></blockquote><p><br /></p><p>My hands</p><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Maneuvered crutches when my teenage daughter coaxed me to take a few steps away from the wall, into the large sea of the floor, to convince me that I no longer needed to hang onto every wall</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Gripped walking sticks when I transitioned away from my walker because I had found my balance again</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Alternated holding one walking stick when I transitioned from two walking sticks to one</p></blockquote><p><br /></p><p>My hands</p><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Have reached for water, reached toward walls</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Have pulled me through water, pulled me toward walls</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">of the swimming pool as I strengthened my core over the last few years</p></blockquote></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;"></p></blockquote><p><br /></p><p>My hands </p><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Now hold walking sticks in the air as I challenge myself to keep walking without letting the walking sticks touch the ground</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Now want to reach out as a matter of habit when I walk around my house</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Now no longer need to reach out around the house because I have found my balance</p></blockquote><p><br /></p><p>My hands</p><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Are unsure what to do as I stand without assistance</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Are unclear what to do as I start to navigate the world without assistance</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Find themselves awkwardly dangling themselves in the air </p></blockquote><p><br /></p><p>My hands</p><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Wonder if they someday will carry coffee cups across a parking lot</p></blockquote><p><br /></p><p>My hands</p><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;">Have returned to those piano and flute keys because I can feel my fingers again <p style="text-align: left;">Now find their way over the keys to make beautiful music </p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Bring music into my soul </p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;"><br /></p></blockquote><p>My hands</p><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Bring</p></blockquote><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><blockquote style="border: none; margin: 0 0 0 40px; padding: 0px;"><p style="text-align: left;">Peace</p></blockquote></blockquote>ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com1tag:blogger.com,1999:blog-6419188729656049450.post-6125446720895787642022-06-04T09:08:00.002-06:002022-06-04T09:08:49.493-06:00Nature in Boston<p>Until this past October, I hadn't spent much time in Boston and it was somewhat of a mystery city. Then my daughter got admitted, with a scholarship, to Boston Conservatory. At that moment, when she was admitted, it became clear that no other school was in the running - this was the dream school. She and my husband went to visit to confirm she would like Boston, and done!! In September, off she went.</p><p>In October and again in May, I was able to visit her in Boston: in October with my mom, and in May with my husband. While we were visiting her, we also got to see parts of Boston, either with her when she had time, or on our own. I have learned that Boston is full of young people (college central), must be the doodle dog capital of the world, is abounding with different coffee cafes (not just Starbucks), and much more. Its subway system, which people call the T, makes Boston a walkable city - no need for a car. So while Boston is expensive, at least we didn't have to drive.</p><p>We walked so many places - from near where Boston Conservatory is, to the North End (Italian), the South End, Cambridge (right next to Boston), and more. Here are some of my favorite places where we walked through nature right in the middle of the wonderful city.</p><p>Parks are always my favorite - anywhere. Next to each other right in the middle of Boston are the Boston Public Gardens and the Boston Commons. One of my favorite days was spent walking through the Boston Commons, then up a huge hill to the capital, then down the hill and through the winding paths of the Public Gardens. In October, the leaves were changing colors. In May, green was everywhere. The Public Gardens have little boats called "swan boats" that take people around a somewhat small body of water in the middle of the park - there are pretty views of the garden and the outline of the city from the boats. The gardens are prettier in the spring - there were tulips everywhere in May. Even though it was cold due to the obnoxious wind which seemed to follow us from Colorado to Boston, the tulips didn't seem to mind. They were arranged in big blocks of colors - one area of red, another of white, another of yellow, and so on - perfectly set in rows which almost lined the park paths. In addition to all the green and the tulips, many of the trees have flowers in May - it is a big contrast to Colorado where things are still pretty brown in early May. A place where everyone with kids seems to go in the Public Gardens is a spot with a bunch of duck statues lined up from tallest duck to shortest duck. Kids play on and around the ducks, which are famous in Boston, and seemingly every kid's parents take many photos of their kid(s) with the ducks. Not to be left out of the fun, adults also want their picture taken with the ducks. As I was trying to set up a selfie with the ducks, someone volunteered to take my picture with them. I guess I can check that box - picture with duck statues!</p><p>While the Public Gardens has a path that winds through various views of water, over bridges, by the ducks, and so on, the Boston Commons has what seems to be more of a main path through the park, with a few offshoots for things like a softball field, tennis courts, statues, and gazebos - it feels more local. In May, probably because we were at the gardens on the weekend, there were food carts, some entertainment (a guy singing while playing a number of instruments), and a lot more people. People seemed very happy to be enjoying all that the parks had to offer.</p><p>Another area we visited briefly in May was the arboretum, near Harvard. It's an area of many different types of trees, flowers, things that are green. It's peaceful - next to a road, but down so the noise of the road falls away. We spent the morning in the arboretum on our last day in Boston, taking the T to a location nearby. There are so many paths to walk, and we do want to return to explore more. It's a place where one could spend a whole day and there are maps showing where things are located throughout the park. It was a bit rainy when we were there, but our time there had the least amount of rain of the day, so we could casually stroll through a paved path one way, and a mulch path on the way back. When a person needs calm, the arboretum is a great place to go. In Boston, I tended to say that "name that calm place" would be an excellent place to read a book, and we joked that I could come up with a book-reading site ranking system. We also joked that I needed to return to these places with my books instead of just talking about it.</p><p>A garden area very near to the Boston Conservatory campus is named The Back Bay Fens - it's basically on the way to Fenway Park (historic baseball stadium) from campus, and we found ourselves there a few times. It's a community garden where different people seem to have small plots where they can work and spend time, again right next to a busy road, but somehow the noise of the city fades. Some plots are beautiful. Other plots, nearer to the back, look like they have potential. I wonder what these small plots are like in the summer and imagine they are beautiful.</p><p>Lastly, there's the beach. While October and May are not the best times to swim in the ocean, the beaches are still there. We visited a beach in May. It was a cool day and almost no one was there. The tide didn't change much, so there were no huge waves to see, but instead it was a calm scene. As a kid, I remember collecting shells the few times we visited a beach and collecting random shells remains something I love to do. Since there were so few people, it meant that all the shells were there for me to explore. I did come home with a number of them. One of the great things about using walking sticks is that you can poke at things like shells, or move shells on top of the sand, to determine whether they are worth picking up.</p><p>The ability to get where I needed to go in Boston was critical to how much I enjoyed exploring the city; being able to spend my energy walking around the parks instead of walking to the parks was important. The subway system (the T) there is impressive. Not many subway stops were missing an elevator which was great. In addition, like what I experienced in NYC, people in Boston did not feel the need to comment on Bart (my walker), my walking sticks, my ability to climb stairs when an elevator was absent. There were no offers of prayers for me by random people, and when help was needed, it just happened, without a production, without a grand ceremony. Bonus: people actually let me push buttons that open automatic doors instead of leaping in front of me to hit buttons. There was a natural feeling to it all - when at a restaurant, there was a natural flow to where my walker would go - it was not a big deal. I didn't catch people looking at my walker - people looked at me. It was very different than other places, and I loved it. I got to be fully independent. </p><p>I'm thankful to my daughter for showing us how to navigate Boston - things were easier when she was with us. We did get to go on the swan boats with her, see the tulips with her, and she introduced us to the Back Bay Fens. Watching my daughter comfortably navigate the city made me feel she really does belong there. I'm excited to go back to visit, to see some of these places again, and to find new places to explore. Boston seems to have endless exploring possibilities. And in May, there are flowers on trees everywhere - it's fantastic. </p><p>Peace.</p>ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-77783337624862634222022-04-17T05:58:00.005-06:002022-04-17T05:58:59.043-06:00Easter joy<p>There are some things you never forget - random things that stick in your mind forever. </p><p>One Easter morning when I was in college, I went on a run. I was so excited to go on this specific run because I _could_run at the time, and I wasn’t always able to run in college. </p><p>It was a cool, clear morning, and I was headed around a very gradual turn on a country road. </p><p>A car drove by me and and as it passed me, the woman who was driving yelled out in the most cheerful voice “Happy Easter!!”</p><p>It made me smile. And whenever I get to Easter, that memory always comes back and makes me smile. </p><p>Happy Easter - may you smile and feel joy!!</p><p>Peace. </p>ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-46283329394888119472022-04-09T21:22:00.004-06:002022-04-10T12:28:42.366-06:00Finding Unexpected Joy<p>I'm resurrecting my blog!! I haven't written regularly in some time, but lately I have a lot of thoughts going through my mind, and then a few people said they missed my blog.... so here is the first entry of my resurrected blog.</p><p>I hesitate in writing this specific post because it is very personal, but I might as well go all out in my blog's resurrection. I suppose in writing this, I hope there is some off chance that someone may see this content and realize there is hope for them, or for someone they know, because I have been told that my problem is a relatively common problem, but that most people quit before they realize they can be helped. It has been tough for me mentally, realizing that if this had been addressed years ago, I could have had much different and better experiences in life. But at least I know now.</p><p>The truth, or the problem, is that I have always had extreme anxiety when performing, whether it be piano, flute, singing, public speaking, work presentations, church singing solos, and any other situation when I am doing this stuff alone and not with a group. When I am part of a band, a choir, a group at work…. then I don't have very much anxiety. But alone, I can freeze completely right before I am to begin, or I can freeze in the middle of something, or I can shake, and even if I am not frozen or shaking, I still feel like a deer in headlights. </p><p>It is also true, and a definite problem, that throughout my life, I have been told that by doing more presentations, performing more, and being prepared to present something or perform something, that naturally the freezes I have will eventually go away. But over the course of my life, these freezes haven't gone away and, in fact, they have only been getting worse - the more I present, the more I perform, the more I do these things, the worse they get. Add heart palpitations and why do I continue to torture myself in this way? </p><p>Presentations and performances have always been things I challenge myself to do, and they have never been fun. I've been following the thought process that if I volunteer enough, I will get better. And I don't like to quit either, so I shake, my voice shakes, my mind goes blank, my heart races. And then I engage in a negative post-presentation self-destruction "technique" called performance bashing that only serves to fuel the same anxiety the next time I have to perform or present something. </p><p>But there is a good ending to this - or I anticipate there will be a good ending because someone finally told me these experiences aren't normal and that there is help!! I think the kind of help I am getting is relatively new - I don't recall ever hearing of this type of thing growing up, and I think if it had existed, someone would easily have pulled me aside and talked to me about it. </p><p>So how did I discover help? I have been taking voice lessons for a few years, and once mentioned my freezing and nervousness to my voice coach. Without pausing, she said, “Oh, you just need to talk to Jon - he can fix that.” And that began a new journey, one of acknowledging who I am, identifying triggers, looking into the whys of these triggers. But it isn't quite as simple as "Jon can fix that," because I've been doing the same thing for my whole life. Instead of a quick fix, I've been on a deep search for answers, for reasons. It hasn't been easy; at times it is emotionally intense and draining, and yet going through this has also been accompanied by happiness.</p><p>How do we break cycles? In my case, I'm working through stages of dealing with anxiety. I'm recognizing that when my mind goes blank, my brain thinks I am in danger and gets stuck there. As a start, I have to break that danger feeling; if I can do that, I have to breathe. If I can breathe, then I can think.... and so on. </p><p>And while I work on strategies outside of presentations, when I am not frozen, the hope is to apply those strategies when I get to the frozen state, or to stop myself before I get to being frozen.</p><p>Why has this been emotionally intense and draining? First, I'm almost 50 - I've lived my whole life using strategies that didn't work, now realizing this could have been stopped at a much younger age. It's been many years of self-torture that I haven't enjoyed, and along with that, the joy that comes with performing has largely been absent. It's also been emotionally intense and draining because I want to know why - why am I like this, but not in all situations? Why do I have these problems? Did something cause this? Yes and no - it's been an intense search. And I am grateful that I have been able to do this searching.</p><p>I have also found joy in performing with a group. While I did have a bit of joy in the past, it hasn't been like what I experienced recently, when all of a sudden I was performing with a group and realized I haven't had this much fun performing - that was its own intense moment.</p><p>In writing all of this, acknowledging the somewhat painful process of finding a way to joy, I wonder how many other people like me are out there? I've had this since I was a kid - I assume kids out there today have this same problem, and they are being told to just keep presenting, just be prepared, and eventually everything will be ok. What if someone realized it isn't going to be ok to keep doing the same thing again and again; what if someone realized this in kids struggling; what if those struggling kids got help and found joy? What if someone realized the teenager in speech class needed more than repeated speeches to get better? What if someone realized the college student who struggled with presentations had given plenty or presentations, so their nervousness was due to something else that could be fixed? </p><p>I don't work with kids much at all. Maybe someone will read this, see a kid, a teenager, a college student, or someone else who is struggling, and can reach out to help them. Maybe this can lead to other people being helped through anxiety. In this journey, my greatest hope is that others get help with anxiety as kids, teenagers, college students... at younger ages, so they can experience the joy I have found at almost 50 years old.</p><p>Peace.</p>ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-62056731381754689452022-04-02T07:44:00.001-06:002022-04-02T07:44:30.023-06:00MS Walk 2022<p><span style="background-color: white; font-family: Arial, sans-serif;">It is already the time of year when I am
getting ready for the MS Walk!! The yearly MS Walk is May 7 in Denver's City Park – it’s in-person again (or virtual if one
wants to do that).</span></p>
<p class="MsoNormal"><span style="color: #5d5d5d; font-family: "Arial",sans-serif;"><br />
</span><span style="color: black; font-family: "Arial",sans-serif;">Here is the
link where you can donate to support me in the MS Walk:<o:p></o:p></span></p>
<p class="MsoNormal"><span style="background: white; color: black; font-family: "Source Sans Pro",sans-serif; font-size: 11.5pt;"><a href="https://mssociety.donordrive.com/participant/147676">https://mssociety.donordrive.com/participant/147676</a><o:p></o:p></span></p>
<p class="MsoNormal"><span style="color: black; font-family: "Arial",sans-serif;">Money
raised goes to research toward a cure for MS as well as for programs for people
with MS, their families, and friends. Every donation, large or small,
helps!! <br />
<br />
<u>My life with MS since the virtual 2021 MS Walk:</u> <o:p></o:p></span></p>
<p class="MsoNormal"><span style="color: black; font-family: "Arial",sans-serif;">I have
kept swimming – in fact, in 2021 I made a goal to swim 100 miles and I reached
that goal in December. I’ve been told I stand and walk straighter now, and that
is from swimming. I also got back to skiing after a year off, and this year was
able to ski, standing up, for half-days which was exciting. My ski instructor,
who has tethers attached my skis to help me ski, told me that I was making my
own turns, even though I couldn’t feel myself making my own turns. I do remember
another time, when I started to be able to lift my foot again, randomly, and I
remember not being able to feel that at first (but now I can), so this seems like
a similar thing. Maybe next year I will feel that I am making the turns myself.
There is always hope.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="color: black; font-family: "Arial",sans-serif;"><o:p> </o:p></span><span style="font-family: Arial, sans-serif;">And
this year, additional humor is helpful:</span></p>
<p class="MsoNormal"></p><ul style="text-align: left;"><li><span style="font-family: Arial, sans-serif;">I’m not getting younger, part 1: While simply taking off my ski
boot one afternoon, my right upper arm made a loud “Pop!!” Sudden, excruciating
pain followed the “Pop!!” and did not go away, but I made it home even though
reaching for the steering wheel seemed to correlate with pain and tears the
whole way home. Yes, it is true – I skied </span><i style="font-family: Arial, sans-serif;">all day</i><span style="font-family: Arial, sans-serif;"> with no problems, but
it was the taking off of the ski boot… “Pop!!” I am slowly improving and have
been told I have an “unstable bicep.” This has nothing to do with MS except that
I do use my arms more than the average person to compensate for my not-as-strong-as-I-would-like
legs.</span></li><li><span style="font-family: Arial, sans-serif;">I’m not getting younger, part 2: After 2 years of right knee pain,
I went to see a doctor about that pain, had an MRI, and was told my right knee
is not in good shape (that’s the short version). The good news was that
physical therapy could help!! Recently my physical therapist said “Your right
quad is not strong enough for you to be able to bend your knee when you walk.” Most
people know that using the word “not” with me is probably just going to result
in me trying to prove them wrong. So, in true Beth style, I have figured out
how to walk with a bent right knee, and my knee is feeling much better. This
does have to do with MS – I continue to get stronger.</span></li><li><span style="font-family: Arial, sans-serif;">I’m not getting younger, part 3: it’s a story of a cat who wanted
food and was incessantly meowing, so I tried to hurry to get the food. Result: the
iPad escaped the counter and landed on my right foot. Ouch!! Did the cat care?
Of course not. He is not a small cat and was still hungry. The iPad was fine,
the cat was fed, and I survived. This has to do with MS in the sense an iPad
landing directly on my foot caused my foot to have spasms </span><span style="font-family: Arial, sans-serif;"> </span><span style="font-family: Arial, sans-serif;">– a symptom of MS – for a long time.</span></li></ul><p></p>
<p class="MsoNormal"><span style="color: black; font-family: "Arial",sans-serif;"><o:p> </o:p></span><span style="font-family: Arial, sans-serif;">Yes, I am still taking the miracle walking medicine that only
seems to work really well for a few people with MS – and I am one of those
people. My Bioness devices which have helped me walk a lot, over many years, aren’t
used much – I only need one for my right leg now, and only when I have to walk
a long way. I’m mostly walking with nothing (around the house), 1 or 2 hiking sticks,
or my walker. I suppose my wheelchair is a bit lonely.</span></p>
<p class="MsoNormal" style="margin-bottom: 12.0pt;"><span style="color: black; font-family: "Arial",sans-serif;">More walking in Boston!! Lori got a scholarship to the Boston
Conservatory to study musical theatre and started this fall. Dave helped her
move, my mom and I visited her in October, and Dave and I are going visit her
in late April/early May. Boston is a great city to walk!! In October, I spent a
whole day walking through the parks there – it was beautiful. I have wanted to
spend a whole day just walking through parks for a long time. From our Boston
trip, I know that I can walk far, day or night, wind or no wind, up and down
hills. I enjoyed it so much. <br />
<br />Treatments for MS have continued to
improve over the years, and I still hope for a day when there is no MS. In the
meantime, I am incredibly grateful for the last 10+ years where I have gone
from wheelchair, to walker, to hiking sticks, to no assistance; from leaning to
standing straight; from having trouble writing to being able to write again;
and much more. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></p>
<p class="MsoNormal"><span style="color: black; font-family: "Arial",sans-serif;">Love
and peace to all.<o:p></o:p></span></p>
<p class="MsoNormal"><span style="color: black; font-family: "Arial",sans-serif;">Beth<o:p></o:p></span></p>ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-5946751969562567092020-08-07T00:08:00.002-06:002020-08-07T06:06:12.117-06:00Happiness in the middle of the storm<p>Thursday: 4:15am: Up! Eye drops, medicine. Swimsuit, shorts, sweatshirt, sandals, bag, go!!</p><p>Wednesday: on edge. Will this ever end? Why can't people follow health advice? Why does everyone now think they are an analyst with healthcare expertise? This shouldn't be political. People should realize the severity of this. I am frustrated. I am sick of being at home. Other people going out means that I will have to stay at home longer because this disease spreads quickly. Even within my family, people go places and do things while I am at home more, frustrated. </p><p>Thursday: 5am: Here I am, one of the very few places I go, the local swimming pool. I am purposefully alone (but for the lifeguard). I sit and put my legs in the water, then lower myself so up I am immersed, up to my shoulders. This next part is the worst. Head under water. COLD. Go. And I start, slowly at first. And then I have a section of intervals. Reach, stretch, pull, repeat.... (breathe...) Reach, stretch, pull, flip, push off the wall. Go!! I imagine my old swim coach yelling, "pull, pull, pull..." Rest. This feels so great. I attack the water. I give all of my frustrations to the water. I keep going. I push to go fast sometimes, really push. At other times I glide, taking my time with my strokes. I just keep going. I don't want to stop because here is where I can put all my frustrations and at the same time, find peace. I don't want to leave. But eventually my fingers are like prunes and I know I am tired, so I stop. I push up on the side of the pool, sitting on the edge again, my legs in their final dangle in the water. And then I get up, dry off, and do all I can to stay warm for the next few hours, which is difficult.</p><p>Find the small things. I do what I can. Swimming is my release. In these unexpected and very difficult times, we struggle for answers on what to do, how to relate to people through masks and physical distance, how to be nice, how to remain calm, how to be happy, how to be peaceful. We live in a chaotic world that keeps throwing things at us nonstop as if to see how much we can take, and how much we can use our "nice" voice of "I'm ok" when we may feel like bam!! We are about to explode in frustration. Or sigh. We are drowning in sadness and trying to hide it. </p><p>Release the frustration. Release the sadness. Find the small things that bring happiness. Focus on those.</p><p>Swimming - my small release. </p><p>Peace.</p>ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-13959636659148258702020-08-06T23:33:00.002-06:002020-08-06T23:33:37.086-06:00Where is peace? 1993 - 2010<div><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span>During this time<br />
Early each morning I would wake<br />
Paused Frozen<br />
A dream <br />
A leg twitch<br />
Reality<br /> I run<br /> Spasm <br /> Uncertainty<br />
<br />
<br />
<br />
2020</div><div><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span>This year<br />
I wake<br />
Paused Frozen<br />
<span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span></div><div><span><br /></span></div><div><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span>A dream <br /> <span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span>Dad. Death. <br />
<span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span>Reality <br /><br /></div><div>
<br /> <span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span>The way things were<br /> <span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> Be still</span><br /> <span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span>Uncertainty</div><div><br /></div><div><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> <span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span>Repeat</span></div><div><span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> Again</span><br /></span></div><div><span><span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> </span><span> Where is peace?</span><br /></span></span></div><div><br />
<br />
<br /><br /></div>ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-82666164122526845192020-02-11T04:45:00.000-07:002020-02-11T04:45:55.245-07:00My Parents on this dayThis day. 27 years ago today. I remember being able to call my parents when I was in my doctor's office after being told I had "probable MS."<br />
<br />
My parents. They were/are my rock. One of my coaches told me recently that what they remembered most about my parents was the support they gave me when I was diagnosed - that they did not give up on me.<br />
<br />
I remember when I came home for spring break shortly after that diagnosis - looking into the living room from the kitchen. I remember seeing my dad in front of the TV, which was a normal occurrence, but there was something different about his expression. It was as if he wasn't watching the TV but was thinking of something else, with a great deal of concern. I imagine he was very worried about me. He was also a runner, and a stress fracture took him out of running. Now I would be taken out of competitive running which he knew that I loved.<br />
<br />
This is the first "anniversary" of me being diagnosed with probable MS that my dad is not here. It is the first of so many occasions when that reality will hit me - that he is not here. I tend to grieve on my own - other people won't see the tears - they are there when I am alone. Since I never saw him cry, and the closest I saw him to crying was when I was diagnosed and then came home, I think he was like me and held his emotions for when he was alone, like that day when I looked into the living room and saw him with a different look, as he was effectively alone then.<br />
<br />
He was so proud of all of his kids. Every time I called him he knew exactly who I was.<br />
"Hi, Dad."<br />
"Hi, Beth." <br />
Those words are going to stick with me.<br />
<br />
And I'll never forget Christmas Eve this past year, when I looked out as I was the assisting minister for the service - and I saw him, in the pew, looking right at me. He smiled and waved and I smiled back. He was so proud of how far I had come. I think his goal was to make it to Christmas Eve and then to Christmas, to be with his family at a time when he knew he was not well, and to smile and do the best he could to be present with us those two days.<br />
<br />
This year, on this day, I remember my dad, his support for all I have done in life, him looking up at me on Christmas Eve as the proud father he was - I'll never forget that moment.<br />
<br />
27 years. He saw me get worse. And he saw me get better. And we'll run together in my dreams.<br />
<br />
Miss you, Dad.<br />
<br />
Peace.ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-61940617277908555082020-01-31T08:33:00.001-07:002020-01-31T08:33:37.132-07:00Memories<span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">Dear Dad,</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">I now know that losing a parent is not easy. Other people who have lost their parent(s) have told me that. They have told me that we each grieve in our own way, that it goes in waves, that I need to give myself time, and on and on.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">This makes me wonder how you grieved when your parents died. You never talked a lot about them. It was as if there was something of a shield there. And then later in life, you found photos and put them on a bunch of disks and made sure that each of your kids got a copy of those pictures.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">What keeps running through my brain is every time I called your house. You always wanted to be the one to answer the phone, even when we were kids, and the phone always had to ring twice before you answered it. We would sit there sometimes and watch as you waited for the second ring to end before picking up the receiver.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">“Hi Dad.” “Hi Beth.” That was every time I called your house as an adult and generally was looking to say hi to you and talk to Mom. Always you answered after the second ring. If you didn't answer after the second ring, I could count on you not answering because you weren't home. Predictable.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">Growing up, I was the most ticklish person, ever. So you and I had a game where we would surprise each other by poking the other person in the ribs. But you always got me - easily. And I would jump. And I got you - twice - that's it. And you didn't jump at all but you did laugh. I remember those two times - I got you right next to where the phone was located (before cordless phones), where the kitchen, the family room, and two short hallways met. That was the only place I could surprise you. I wonder if that is because you were always waiting for a phone call so my poking was not anticipated.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">The mail - also something you wanted to get first. You would wait for it to arrive. And your kids - we wanted to beat you to the mail. And we would even try to beat you by waiting on the lawn, out of sight, because you were inside and we were closer outside. But you still found a way to get to the mail first. Fun fact: getting the mail is now not important to me at all. Maybe that’s because there’s no race to it.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">Speaking of races, we both raced. You told me your best time in the 800, which was your favorite race and my favorite race. You got taken out of running in college by a stress fracture. I got taken out due to legs not cooperating. But when I ran, you were always there to cheer - you and Mom - always. I don’t think either of you missed any of my running through high school and you both even came to a college cross-country meet of mine. And you would always yell “stride,” and I would always think, “what do you think I am doing?” The last time I went to the track was the day you were transferred into hospice. I was timing myself and all the way around the lap, I just kept thinking "stride, stride, stride." And it finally meant something! I told you that when I went to visit you that same day - that I got my personal best time that day by imagining you were telling me to stride. I may try that again.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">When you were in hospice, the chaplain visited and got my brother and me to tell stories of growing up with you. There are many. Near the top of my mind was when I learned to bike - I was working on riding without training wheels, and I mastered it. I wanted that - me riding my bike without training wheels - to be your birthday present (which was only days away). But then you had to be on the roof for something and you saw me - happy early birthday. You gave your kids a lot of early birthday presents, too. If we needed something big, well, happy early birthday present!!</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">St. Patrick’s Day. You were a good part Irish. And that day? You never wore green on it. You thought that was such a silly American thing. I was so afraid of being pinched if I didn’t wear green. Not you. St. Patrick's Day to you was an American holiday that was silly. But I will continue to wear green on March 17.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">The symphony: going to the symphony with you was the best. We did that occasionally - just the two of us - when Mom let me have her ticket. Actually, going out to dinner and getting a steak, before the symphony, was the best part of the symphony. Going to sports events was fun, too. The best part of those was cotton candy. I wonder if you knew how important the food was to me.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">Speaking of food - our kitchen table. Most of the time you and Mom talked about your day. Sometimes something would happen that would be hilarious and we would all be laughing. And when it was deemed too out of control for the table, we would have to go sit by the stairs until we could stop laughing. Those times when you laughed - there weren't a lot of them - but they were memorable.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">And just so you know, Dad, all those times when a light was left on upstairs when we came down for dinner, and you made one of us kids go up to see who left their light on? Well, I am not sure we always told the truth when we returned, you know, about who left their light on, because whoever did leave their light on was supposed to be the next kid to have to go upstairs the next time a light was left on. So if we went up and discovered we had left our light on, why would we admit that?</span><br />
<br />
<span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">Your service is coming. One night when you were in hospice I felt the need to stay up late to find all pictures of you, for the eventual service. I was so focused. I needed the photos that night, in my mind. That’s probably why I got sick. Four hours of sleep after photo-searching was not the best idea.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">But your service - we picked the hymns and I informed people how much Kleenex I would need per hymn. We have a bunch of pictures to put on poster board. The pastor is going to wear the stole of your dad’s - the one worn at all of our weddings. Now it will be worn for your service. </span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">We had some great times - I got that by looking at the photos - memories have been very present recently. You are constantly weaving into my life now in memories. </span><br />
<span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;"><br /></span>
<span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">"Hi, Dad." "Hi, Beth." I can still hear your voice, clearly.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">And it is never easy to lose a parent. Cherishing the memories.</span><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><br style="-webkit-font-smoothing: antialiased; background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;" /><span style="background-color: white; color: #201f1e; font-family: "Segoe UI", "Segoe UI Web (West European)", "Segoe UI", -apple-system, BlinkMacSystemFont, Roboto, "Helvetica Neue", sans-serif; font-size: 14.6667px;">Peace.</span>ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-25124021898539145812020-01-19T19:59:00.001-07:002020-01-19T19:59:18.572-07:00What were you going to say, Dad?Dad, I love you.<br />
<br />
And I am no longer sitting next to you, wondering what you are thinking.<br />
<br />
I know you wanted to tell me what you were thinking, because three times on that day, you mouthed my name and only a slight sound came out. The day before that day, I could still hear you talk but I couldn't understand you at all. The day before that, you were still speaking and hard to understand, and you told me you were sorry about the talking - that you couldn't help it. And I knew, Dad. I told you that I knew. And before that - well, you were combative and you couldn't help it, but in that state of mind you were not in the mood to talk.<br />
<br />
If you could have talked, what would you have said? I thanked you for saving my life. I reminded you that you held my hand when I went into surgery, and when I woke up from surgery. I told you that I saw you on Christmas Eve, when I looked out at you and you waved and smiled at me, and I smiled back. I will never forget that. And I told you that Lori likes classical music like you did. And after all of this, and several times throughout that day, the expression on your face changed. It looked like you were content. But you wanted to tell me something, and I won't know what that is and whether it was you in a different world, or something I needed to hear. So while I suppose I got to be with you so much during the last few weeks, I will never know what you were going to tell me.<br />
<br />
And about those few weeks. I know you didn't want those few weeks. I know you didn't want to be in the hospital, but there was no choice. In the hospital, when things changed and you went into hospice, I knew you wouldn't like that either. At the hospital we were there with you. In hospice, we were there with you. We worked remotely from hospice and tried to help as much as we could. And that was strange.<br />
<br />
I left Thursday night and told you I would be back on Friday morning. On Friday morning I decided to go to physical therapy instead of coming to see you first. After physical therapy, I drove to see you and met Mom in the lobby. She was up early! But she was up early because your baptismal journey had ended. And so we went into your room and you were still in the bed. And you were still very warm and you stayed warm. I thought you might wake up. I really did. It was as if you were still just asleep. I told you I loved you and then I sat next to you for hours, while we all came to terms with all of this and waited on next steps. Those few hours were really rough. And the whole last few weeks were rough, but during those hours it was as if someone pulled all the tears out of me. They even gave me my own kleenex box.<br />
<br />
Then they came to take you and we waved to the mini-van that took you away.<br />
<br />
And then we packed up and left - almost like leaving a hotel.<br />
<br />
The whole past couple of weeks have been surreal. Things I never thought I would do, or even knew existed - I did those things. Things went too fast and at the same time I am now at home trying to get caught up on the basics like doing laundry and thinking about taking down the Christmas decorations.<br />
<br />
About the Christmas decorations... we all seem to have them up still. It is as if time froze there - on the first day of Christmas, which was your last good day. I don't want to let that go - when the Christmas decorations come down, it's like a final stamp on something, a stamp I don't want.<br />
<br />
And you are loved by so many - that is very clear. So many students loved your classes. The professors who worked with you are very sad. And you're my dad<br />
<br />
So Dad, what did you want to tell me? I love you, Dad.<br />
<br />
Peace.ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-46797818025121568652020-01-16T23:12:00.001-07:002020-01-16T23:12:14.934-07:00Dear DadI love you, Dad.<br />
<br />
Do you remember when you saved my life? I was eating candy upstairs, which wasn't allowed (no food out of the kitchen) and a piece got lodged going down, and you just happened to be there, gave me the heimlich maneuver, and I survived.<br />
<br />
And now I am here, and you are there - so close to me in distance. I sit next to you. I stand next to you and say "Hi Dad. It's Beth. I love you, Dad." And then I ask if you want some water. Sometimes you raise your hand and that means yes. Sometimes you don't. Sometimes you open your mouth. Sometimes your mouth is just open. Sometimes you suck on the little sponge, which holds either tea or water, and I hold it in your mouth with the stick that is attached. Most of the time you swallow the water and your face looks relieved.<br />
<br />
Yesterday you said my name 3 times. Yesterday you said "Fine, thanks." That meant you had enough of what we offered you. I know you wanted to tell me something after I reminded you that you saved my life.<br />
<br />
Two days ago I kissed you and said, "I love you, Dad," and you kissed me back. Yesterday you tried to kiss me back. Today you couldn't.<br />
<br />
I am still here, Dad, and you are still there. And I wish I knew what you are thinking, what memories you are experiencing. I do notice that when we tell a story, your facial expression changes slightly, as if you heard the story. And what are you thinking?<br />
<br />
This hurts, Dad. I want to know what you are thinking. I know this is not what you wanted. I know you probably wish we would carry on with our lives, but we can't seem to do that. We spend time in the room where you are, and we talk to you. I struggle. I really struggle. No one ever imagines that they will go from walking, to walker, to wheelchair, to walker, to walking sticks, and then watch their dad go from walking, to walker, to hospital, to hospice.<br />
<br />
And while I struggle, and know you wouldn't want me to struggle, I hope. I hope I dream of running alongside you someday. I hope I dream that we run the 800 together, fast, that we high-five each other at the end, and that all the emotional pains I feel, and tears I cry, today, disappear and are replaced by beautiful memories of the wonderful things and times we shared.<br />
<br />
I love you, Dad.ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-39267713875313005522019-08-21T19:56:00.000-06:002019-08-21T19:56:18.388-06:00Disappointed"I'm disappointed."<br />
<br />
"So you're disappointed in me then."<br />
<br />
"No. I'm just.......... disappointed."<br />
<br />
"Then you have to be disappointed in me because you can't just be disappointed."<br />
<br />
But you see, I am disappointed. I'm disappointed that church isn't to you what it is to me, and thus you refuse to go.<br />
<br />
I understand that you say you will go when someone comes back. I don't know if that is really true, but I do believe that when the someone comes back, you feel that the someone understands how you feel about religion, including your doubts. That is the only part of all of this that does not disappoint me.<br />
<br />
I'm disappointed because at some point, or maybe things built up over time, but at some point, it seems that you think that church=religion.<br />
<br />
I'm disappointed that you won't go to church because you have large doubts about religion right now, which is totally normal, but it seems you have equated these doubts with attending church. So many have huge doubts. Basically everyone has doubts at some level.<br />
<br />
Church does include religion, but you can listen to the sermon and always interpret it in your own way, and that interpretation actually doesn't have to be religious. You can apply sermons to your life, not at all in a religious way.<br />
<br />
I'm disappointed that you don't realize that church is also community. Perhaps you do see it as community, but if you truly felt included in the community, you would want to come to church.<br />
<br />
I'm disappointed that you don't see church as a way to serve the community, in a non-religious way. Perhaps you do see church as a way to serve the community, but it is not enough to get you to come to church anymore.<br />
<br />
I'm disappointed that church doesn't feel like a really supportive place for you, because it is that way for me and I wish everyone would have that sense of church. Did you feel ignored? Did I ignore you? I do feel like there were times when everyone was talking to each other, and you were there, and you felt ignored. I am disappointed that you were ignored, because if you weren't ignored, church is still a place where you would want to be.<br />
<br />
I'm disappointed that church isn't close to family for you, that you don't realize that our church family would do pretty much anything for you, that our church family loves you very much. Perhaps you do realize this, but it still isn't enough to get you to come to church. Perhaps we are that family but some people are so annoying to you that you can't stand to be around them. If this is true, then I am sad about it.<br />
<br />
I hope you are able to find other ways that create the atmosphere that church creates for me. Perhaps even a different church could create the atmosphere that I have described here, but for you.<br />
<br />
Community. Service. Support. Family. Love.<br />
<br />
I am disappointed that you do not feel these things at church, or at least not strong enough to come to church anymore.<br />
<br />
I am disappointed that all of these things are not as existent in society today as I feel they once were.<br />
<br />
I am disappointed that as a member of the church, I feel like I, and the church, somehow failed.<br />
<br />
And I hope that somehow there is learning in here, but I'm not seeing it now.<br />
<br />
Peacems'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com1tag:blogger.com,1999:blog-6419188729656049450.post-7516280544324458342019-06-29T20:56:00.001-06:002019-06-29T21:45:43.884-06:00Journeys without wheelchairsWriter's block... I've attempted to write this a bunch and here it is - maybe someday I'll put all of this together in a book and rewrite much of it.<br />
<br />
During late spring this year, I faced my fear of flying and we traveled (two separate trips) to New York state to see my cousin get married, and then to my awesome alma mater, Kenyon College, which is somehow always a magical place for me.<br />
<br />
Before we left, I had several conversations. I told my husband that I really couldn't imagine wheeling through the airport when I could walk pretty far, and I hate sitting for any period of time. I told my physical therapist that I wondered if I could do trips without my wheelchair, "Nemo." I told a few other people similar things. No one said that I needed to take my wheelchair and it was suggested that I really wouldn't know if I needed it until I tried. And so for the first time since I have had Nemo, I left him at home and made my way through airports, retreat places, a mall, more airports, the Kenyon campus, hotels, dorms and dorm rooms, restaurants, bathrooms, and more airports - without Nemo. I survived. There were some interesting times. And I am glad Nemo stayed home. Here are some highlights of the trips.<br />
<br />
The journeys began at the Denver airport. Our family of three first took an overnight flight to Newark. I hate to fly - it's my biggest fear. Flying overnight worked because I took medicine which calmed me but also made me very tired - so this method works best if I am flying when I should also be sleeping. Walking through airports - it's a lot of walking - the Denver airport is under construction, so there was a lot of walking there. Security - that should be a different blog. But know that no one who has a walker will successfully blow up a plane because people with walkers undergo more security than anyone else.<br />
<br />
We made it to Newark without me pushing the flight attendant button to ask if the slight turbulence was normal (what I like to do on airplanes) and without me giving anyone next to me the death grip as we took off. I walked onto the plane, and I walked off the plane, without any assistance, which I could do because I didn't have to use Nemo. And then we had to go to another gate...... a gate that was a long distance from where we were, and my sleep medicine was still working well. I remember walking, and walking, and walking, and being in a complete fog. And then I was told we were where we needed to be, and I fell asleep with my head on my walker, zonk. I didn't wake up until it was time to get on the next plane. Got on that plane, fell asleep, woke up when we landed (lucky flight attendants didn't have to deal with me pushing the button since I was asleep). More walking! But my medicine had worn off so I was awake.<br />
<br />
And to that point, I had walked a lot, much of which I was in a zombie-type state. But Albany - more steps - to the car rental! Then breakfast, and then we were off to the beautiful Catskills! That weekend was great. Really Nemo would have been in the way. Where there were steep hills I took a car.<br />
<br />
And then... "Hey, Beth? It seems your walking stick broke." What?! Somehow it broke. I took this as a sign I shouldn't be using them anyway because my knee had been injured and I had been told to cut back on using them. Bart (walker) went everywhere from then on, that weekend. We had a lot of fun. My cousin got married. My daughter sang a song at the wedding. We ate great food. We danced to great music. We attended a book club. We stayed in an awesome cabin. I had no trouble navigating without Nemo. We made it home. Lots of walking. I think we got into the furthest gate from the parking lot in Denver.<br />
<br />
Next trip. Kenyon! Another overnight flight. Continued construction at the Denver airport. More observations that people who use walkers will not be able to blow up planes due to high security. Bioness devices do not make it through metal detectors and are tested to make sure they don't have bomb-making stuff on them. Also, with Bart I haven't taken the moving walkways. But I get more exercise by not taking them - I keep telling myself that to make myself feel better... as people on the moving walkways move past me while just standing still.<br />
<br />
We took another overnight flight and this time went first to Washington DC, where I took my nap, and then after 3 hours flew to Columbus. I remember the Columbus airport being much smaller! But again, Nemo would have been in the way. We rented a car and drove to Kenyon, registered for the weekend, and figured out where the electric scooter they had for me was. But I never went to pick it up. Since it was alumni weekend I could drive certain places and then walk.<br />
<br />
And I did walk. It had been 4 years since I had been to Kenyon, and I parked in the wrong place, so we had to walk further when we first went to rehearsal. Lots of construction was there - I figure I got to see the construction up closer than most people saw it that weekend since I parked right next to it.<br />
<br />
We also sang, and sang, and sang more. We stayed in the dorms and I used the dorm showers - that was an adventure. And I visited people - I loved that - my college roommate, my first college advisor, my running coach, my Economics professor, my choir director (good thing I had missed getting a picture with him, so I got to meet with him again and visit for a bit and get a picture), a good friend who also went to Kenyon. I missed my doctor who was in Colorado while I was in Ohio, and then there was a tornado so I didn't get to see my Statistics professor because he had to help his son whose house got hit. We drove on all of the old running routes I used to take. It was beautiful. We got out of the car. We took pictures. I have great memories of those routes.<br />
<br />
While visiting with my Economics professor, I talked about the time I had spent, while in college, going to medical appointments. And I realized that I had never been back to the place of all those appointments. So we had a bit of extra time and we drove to the Ohio State University medical area. And then I had to find the Wendy's where I used to park when going to appointments because I refused to pay to park at the medical center. It took a while to find it, but the Wendy's is still there. I have memories of walking to and from that Wendy's, the last time being when I was diagnosed, and the walk back to Wendy's feeling like a dreaded finalization of what had been happening for years. Driving through this area was emotional - feelings surfaced that hadn't for years - of how many times I had to go and have tests which brought no answers - feeling at some points that many did not believe me while knowing that my best friends, my family, my Kenyon doctor, and my running coaches knew something was wrong. I am very glad I went back. I won't go back again. I learned that the neurologist who diagnosed me, and who I liked, has retired. It has been a very long time.<br />
<br />
And then, one more plane trip. One more dose of medicine to calm me and make me tired. Since the last flight was a direct flight, my mom picked us up and drove us home. In the air, I looked at my daughter next to me. She fell asleep and looked so peaceful while I took sleep medicine and was fairly wide awake due to turbulence. I wish I could fly like she does!<br />
<br />
Arrival: Denver! And........... farthest gate! I turned on my Bioness. Beep beep beep! Red light. The Bioness on the right side wasn't working. My right side is weaker by a lot and it didn't get any help. My daughter had a rehearsal and she wanted to get there so she wanted me to hurry, and all I could do was drag my right leg along, getting slower, and slower, and slower... "M'aam, would you like a ride?" A nice person asked me that. I tried to politely say no thank you. See, this is my battle and I'm not taking help. We made it to my mom's car and I was exhausted because of dragging my right leg.<br />
<br />
Finished! No Nemo! I made it! I learned that airports involve a lot of walking and I will walk more than others since I can't do the moving walkways. I learned that I will have challenges everywhere along the way, and that most of these challenges are not visible to others. I also learned that these challenges used to be impossibilities. In the past I haven't been able to get on and off a plane by myself. I haven't been able to stand for extended periods of time. I haven't been able to use a regular toilet without needing bars to grab. I haven't been able to curl my hair while standing. I haven't been able to do as much as I do now. These trips showed me how far I have come and they showed me that I didn't need to bring Nemo. So I'll keep pushing forward and exploring new possibilities that I never really thought would be possible. Never say never.... "suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us." Something like that.<br />
<br />
Peace.ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-76573683127814279392019-04-15T20:49:00.000-06:002019-04-15T20:49:33.789-06:00MS Walk - 2019This is what I wrote in an email to the list of friends and family of mine who support me in the MS Walk every year.<br />
<br />
It's that time of year again - May 4 is Denver's MS Walk in City Park. Last year I wanted to just walk the whole thing, and I did, without stopping. This year my goal is to walk the mile in under 30 minutes. You should know that this is a pretty big goal. I'm also stubborn and if I don't make it, I will find other places to walk a mile in under 30 minutes.<br />
<br />
Before I tell about my year and why you should continue to support me, here is the link where you can donate to support me in the MS Walk. Money raised goes to research toward a cure for MS as well as for programs for people with MS, their families, and friends. Here's the link (and every donation is helpful - big, small, somewhere in between):<br />
<a href="https://secure.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=30400">https://secure.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=30400</a><br />
<br />
There's a thank you video on that page - check out the end of it!<br />
<br />
This year has been another breakthrough year for me which is strange because I thought last year was the last of those. But I'm not complaining. People now ask me what I did to my knees. It's nice to have people think that bad knees are my only problem.<br />
<br />
This year I went from using my walker to using hiking sticks to walk. Making this transition is the hardest thing I have ever done. It is all about my core muscles (stomach and back) working, and trusting that I have the balance needed to use something a lot less stable than my walker. At first, it took all of my concentration, and I still don't look around much when I use them, but I have just started to be able to go up and down curbs using just the sticks. I can walk about 30 minutes with them, at a much slower pace than I walk with my walker. It is difficult because it is less stable, especially initially. And at a certain point my core muscles are done and I may not be back to my car - it's a bit problematic. It feels like being placed in the middle of a swimming pool, far from the edge, and then not knowing if I can swim at all, but I'm stuck in the middle of the water, in a pool where there are no lifeguards or anyone who knows how perilous it is that I am in the middle with no options other than to somehow keep going, so people just wave and say hello as I have a bit of an internal panic attack. But I have made it back to the edge of the pool, in this analogy, many times. It hasn't been pretty but I am continuing to improve. Step. by. step.<br />
<br />
This is possible, still, because of the combination of Ampyra, which I have been on for 9 years now, physical therapy, being stubborn, and the support of all of my fantastic family and friends. This year a generic version of it became available which makes it a lot less expensive for whoever is paying for it (I pay a copay every month). I can now stand for any length of time without getting tired. Last year before the MS walk I walked a lap around the track in 9 minutes and 30 seconds. This year I walked that same lap in just under 8 minutes, gasping for air when I was done. It felt much like how I used to feel at the end of an all-out 400 or 800 meter run. I absolutely love that feeling - there is nothing like it.<br />
<br />
I still use a treadmill that holds 25% of my weight, twice a week and have walked 16 minutes at 3.3mph on it. I don't know that I can go much faster unless I can figure out how to bend my knees when I walk - and I don't know how I can learn that, but I didn't think I would ever use hiking sticks so you just never know what is going to happen.<br />
<br />
The Bioness devices I use to help me walk came out with a new model! The new model is exciting because it doesn't require a heel sensor but works by determining when I am starting to lift my knee when starting a step. And it is controlled right on the device so I no longer have 2 remotes that hang around my neck.<br />
<br />
I stood up to ski again this year and one by one they removed a bunch of things that helped me remain standing while skiing with what they call ski legs. By the end of the season it was just the ski legs, my instructor, and me standing to ski.<br />
<br />
There are also many little things. I can walk around my house without using anything to walk - around 50 steps. We do joke about me looking like a walking zombie - imagine a person walking with knees that do not bend.<br />
<br />
It's an every day thing. I'm not going to give up and I'm hopeful that small improvements will continue. I hope others know the same thing - that no matter what is happening in their life, they should not give up, and no one should assume that they can't improve, because you just never know. Pep talk complete?<br />
<br />
What would be amazing is if you, the people who are reading this, could find a way to donate, as so many of you have done for years - to sponsor me in the MS Walk, no matter if it is $1 or some huge amount of money - so that someday we can say there is no more MS - so we don’t have to look for improvements - but so that we can say people do not have to even be diagnosed with this disease. That is my great hope.<br />
<br />
Thank you for all you have done in the past in terms of sponsoring me. Words cannot express how grateful I am.<br />
<br />
Much love and peace to all.ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com1tag:blogger.com,1999:blog-6419188729656049450.post-2603357925118336322019-03-22T21:23:00.000-06:002019-03-22T21:23:31.910-06:00It's just one toe!Note to readers: This is mostly supposed to be a funny entry with sarcasm everywhere. And, this is not a good post to read while eating. You have now been warned.<br />
<br />
Over a month ago, I noticed my little toes on both feet hurt a bit, like they had rug burn. I attributed this to my daily activity of getting up from sitting on the rug in our bedroom, in bare feet, as a daily confirmation that I still can get up.<br />
<br />
But then the left foot felt fine and the right foot hurt more. We went to a store and I was wearing my Ness devices on each leg - they shoot signals for me to lift my toes. All of a sudden I realized pain was shooting from the right Ness between my little toe and the toe next to it. "Let's go home! What is happening?!"<br />
<br />
Upon our arrival home, I tore off my right shoe and sock, grabbed my foot, and looked. Wow! Yikes! What in the world was going on with my little toe? It had a thing between it and the next toe - a big, white thing. Internet research confirmed it was a blister although none of the photos looked quite like it.<br />
<br />
Two days later I called the doctor I see every six months to check out how well, or not well, I am doing, and to show him that I am still altering the course of whatever disease I have despite the fact that Ampyra, the main medicine I take, is not supposed to do much. Apparently, I'm a science experiment.<br />
<br />
A week after I phoned my doctor, I saw my doctor. This thing looked pretty much the same as when I called, even though I had soaked my foot in Epson salts again and again and again... He looked at the thing and declared it to be a blister, and asked me to come back two weeks later, after wearing different shoes so my toes didn't rub together, so I could see him and another guy who works with him.<br />
<br />
By this point I had stopped using my Ness devices because pain constantly shooting between my toes is not my idea of a fun time. On the treadmill at physical therapy, without my cool Ness devices, I slowed to 2.2 mph for 10 minutes. At about 9 minutes it felt like I was dragging my right leg along for the ride - and it looked that way, too. By 10 minutes it was more of a slow, lopsided, semi-left-footed turtle hop. I should have video taped it.<br />
<br />
Two weeks after the first appointment, I returned to my doctor so he and another doctor could look at the thing. He took one look and said, "that doesn't look like the same thing!" The other guy there nodded in agreement and told me I needed to pad my toes to prevent them from rubbing. Then we all looked at Internet pictures to see if one looked like my toe, and my doctor thought the thing now was a wart covered by a blister... and you should know that the Internet pictures of these things are not pretty. Avoid eating when looking at things like this.<br />
<br />
And also, I asked my doctor about my knee which hurts. He had a theory about that, and that a knee brace would help. But I thought about that and determined that assuming the thing goes away, I can't wear a knee brace and then cover it with a Ness device. It wouldn't just be a bad fashion statement. The Ness signal just wouldn't get through a knee brace. That's a definite problem. So I left with pain jabbing into my right toe and knee pain on my left side. I was not happy!<br />
<br />
At home, I wrapped my toe in gauze and then looked at the toe plus gauze sticking out sideways from my foot like it was an extra toe. And then I tried to put on a shoe. Ouch!!!!!!!!!!!!!!! I removed the shoe, the gauze, and decided to wait to see what the next doctor said.<br />
<br />
A week and a half later I saw a dermatologist. He was awesome. He took my toe and looked (why would anyone want to be a dermatologist and look at things like this all day?) and quickly knew what it was. Millions of these are diagnosed each year. Lucky me! He sees them daily. Think of a sugar ice cream cone. What I have, still covered by a blister, is a corn, but it is shaped like an ice cream cone where the pointy part is on the inside of my toe and it feels like someone is repeatedly jamming a needle into my toe. And along with the corn, I was told I have a slight bone abnormality on that toe. Thanks for those genes, Dad!<br />
<br />
So the cure? He told me it will go away on its own in "a while." And so of course I asked, "What is a while?" "A month or so, if you get your foot measured, and get new shoes so your toes are not rubbing against each other, and toe separators to help with that."<br />
<br />
The next day I went to the specialty shoe store where they measured my foot and showed me seven different types of shoes. Two were ok, although I have an average width foot that is now in a really wide shoe so my toes can move. The other 5 I cannot believe anyone would buy - ugly!<br />
<br />
So here I am. I feel like I should somehow be thankful since a few other things have happened this week to other people, and these other things are much worse than my toe problem.<br />
<br />
And yet here I am, with two new pairs of extra wide shoes, toe separators, toe pain, knee pain, and my husband asking why I don't write a blog about my March Madness picks. I told him my blog is about MS and faith. He said I could write about my faith in my March Madness picks. That is not going to happen here (I don't have a lot of faith in them - it's not been a good start!).<br />
<br />
I guess I do have faith that somehow God is with me now, but really God? Ha ha. I could use some divine intervention. So could my three friends who are going through different things this week. God is with them also.<br />
<br />
Really, at the end of the day, what I have realized is that one little toe can certainly cause a lot of trouble and change everything going as planned, to everything being in complete disarray and causing pain to a person who has a low tolerance for pain.<br />
<br />
Peace. It's here - somewhere. Hold onto it for me.ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-43537683732423414792019-02-12T21:31:00.001-07:002019-02-12T21:31:47.365-07:00What would you do if you weren't afraid?This question was posted in our kitchen at work. I initially thought if I weren’t afraid then I would enjoy flying instead of white-knuckling it through flights and asking flight attendants if the turbulence is "ok." But I was about to go skiing when I saw that question, so my thoughts transitioned to, if I weren’t afraid, then how would skiing change? If I weren't afraid of falling while skiing, or afraid that I wouldn't be able to stop myself from charging into a tree or worse... If I weren't afraid, how would I ski differently? And I knew that if I weren't afraid, I would find myself skiing with confidence and without hesitation... I wouldn't slide out, gasp, slip, and flop to the ground when I started skiing faster. I would simply continue to ski with the same way I ski when I am not going fast. With that in mind, I hit the slopes.<br />
<br />
<br />
I still sit-ski for half of the day when I go skiing - in the morning, when there is the most potential for fresh powder. And that is when I am the most afraid - sit-skiing on my own. This year I thought a lot about not being afraid. On my first time down the slope, right before I started, I thought "What would you do if you weren't afraid?" And I made the turns. With each turn, I thought of pushing past a force that was there, but that I could push past. I could correct myself when I started to slide as if I were pushing fear to the side. Skiing got easier. There was a rhythm to it.<br />
<br />
I have noticed that my balance is better this year. I have a new way of skiing which is somewhat like driving, somewhat... When I make a right turn I push with my right foot and leg into the ski bucket, where my feet rest, and it's like a pedal - somewhat like driving (sort of like if I were flooring it as hard as I can with the gas pedal). And when I make a left turn I push with my left foot and leg in the same way. To do this, I had to get past being afraid - to try something new, I couldn't stick with the old.<br />
<br />
<br />
In the afternoons I stand up to ski. Last year we spent the afternoons figuring out the best way to get me to be able to ski while standing up. This year we have a system. Last year we tried to figure out a way to get me to move through the ski line while standing up, and it was impossible. We kept trying different ways to do this. None worked well until the last day of skiing, when my instructor that day asked why I didn't just go up the lift in the sit-ski, have someone bring the ski legs (equipment) to the top, and then have me get out of the sit-ski, stand up to the ski legs, put my skies on, and then ski down? Brilliant! And that is what we have done this season.<br />
<br />
<br />
This season, stand-up skiing is about skiing to the point that I am sore the next day. At the beginning of a running season, there were always times, like after the first meet, when I and most runners would get very sore legs and it was awesome because then we knew we had pushed ourselves. But since I did those races, my legs have never been sore. It has probably been close to 25 years since I experienced sore leg muscles. But this year, on my first time down the hill when standing, I could feel my leg muscles working. And the next day those leg muscles were sore. I wanted to tell everyone I knew how excited I was, that I had finally been able to push myself to that point. The second day this season that I skied, I tried to use my legs more and not lean on my shoulders. I pushed more. By the time I came in from skiing, my legs were done, in a good way - I wore them out. For the next few days after that, my legs were sore like I remember them being after those first races of running seasons. But the next day I skied I didn't get sore. Bummer.<br />
<br />
<br />
This past weekend I skied again and we removed a strap that went around my back to hold me up, just in hopes I would be sore again. I asked if I was the only one with such an interest in getting sore and my instructor laughed and said, "I'm pretty sure you are the only one with that goal." Excellent. But, I didn't get sore. And so I know that at least I am getting stronger which is a good thing.<br />
<br />
On each ski lesson I have, there is the main instructor plus one or two volunteers. This year a few of the volunteers have skied with me previously. One remembered me well. Near the end of the day, he said "Beth, you just seem stronger than what I remember." And he is right. Much of what has been happening to me involves increases in strength that are hard to describe. There are times when I catch myself when walking and keep going, where in the past I would have fallen. I used to walk through our house sideways, gripping walls. Now I walk forward, with a hand near the wall in case I need it for balance. But each change I consciously try also involves confronting fear - confronting being afraid - and trying to move past it.<br />
<br />
Yesterday was the day, 26 years ago, when a doctor told me that I probably had MS because of two small lesions found on my spine. I asked him if I should just lie down and die. He told me why I shouldn't. And I was afraid, but less afraid then before I knew this, because there were no answers prior to knowing. And though these 26 years have not been easy, my doctor was right. Laying down and dying wasn't a good option. Whatever I have is unpredictable. Uncertainty can cause anyone to be afraid. I never know what will help me, or where my path will go. But I feel so fortunate, on this day, to be able to push forward, pushing against being afraid, and in pushing, finding confidence and strength I didn't know I had.<br />
<br />
Peace.ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-4042314071712798992018-12-28T20:35:00.002-07:002018-12-28T20:35:36.050-07:00Ending 2018This past year has flown, but so have many years before it. And because it has flown in so many ways, this blog has not been as active as I would like. This blog is meant to tell my journey as I navigate disability, change, and faith. Several times I would start to write something and those writings are sitting as drafts because for me, they didn't go anywhere and I found them boring. But here we are at the end of 2018 and even if boring, I can attempt to summarize the year. Quite a few people have said I should write a book, and I have thought that if I knew how to download the contents of this blog all at once, that would be a start to a book - about my life, and mostly the life-changing things that have happened to me in the past almost 8 years... 8 years that I never saw coming, but I did cling to hope, and these last 8 years have been about answers to that hope.<br />
<div>
<br /></div>
<div>
This fall I had more breakthroughs, which is intriguing because I really thought that the fall of 2017 was my breakthrough time that couldn't be matched, and then it was, this fall of 2018. Things that change for the better in my life may or may not be able to be seen by others. People who haven't seen me in a while usually react to seeing me by noticing how straight I can stand. Standing that straight feels natural now. It didn't used to feel natural - it started to feel natural this fall.</div>
<div>
<br /></div>
<div>
The big thing, and maybe the hardest thing I have done in my life, happened this fall. I bought walking sticks and have been learning to walk with them. One Friday, I just decided I needed something different, and on Saturday morning I started calling places to see if they had walking sticks. I have tried versions of crutches in the past. Actually crutches that work for me are the ones that you stick under your arms. For a long time I tried using them but would always hang onto something in addition to walking with them, until one day my daughter decided I was going to cross a small distance on the floor that didn't have anything on which I could hang. I remember the 6 steps that I took. Imagine when you learn to swim and the swimming teacher makes you cross a distance of water without clinging to her. It's like that. After the first step, I panicked and exclaimed, "I can't do this!" And my daughter declared "yes Mom, you can, it's just a few steps, you are fine." "No, I'm not (panic in voice), I'm going to fall." "No, Mom, I'm right here, you are not going to fall." And then I made it! And without this happening, there would be no walking sticks months down the road.<br />
<br />
So, back to the walking sticks... a guy who worked at a store that sells outdoor stuff convinced me that their walking sticks might work for me. I went into the store and discovered a whole section of walking sticks! Never mind that they are for hikers. The very, very nice guy who had talked to me on the phone asked if I needed help. He knew all about walking sticks and I had no idea there are so many kinds! Even the part where I grip can be made of various different materials. I chose my walking sticks, bought them, and proudly left the store. I came home and showed them to my husband and daughter, who both seemed happy that I had done this. I practiced with them around the house that day.</div>
<div>
<br /></div>
<div>
The next day I decided to take them to church. Why not?! Church is generally a safe place for me where I try various things and people probably do not realize I am trying things. Learning to use walking sticks is the hardest thing I remember doing. That day at church, it took all of my concentration to walk with sticks instead of my walker. Walking sticks require more balance than my walker. Strangely, it is not about legs at all. It is all about core muscles. With walking sticks I can't bend over as much when I walk and I can't sway back and forth. There is also a sense of rhythm - when I first start I am not as steady, but then I find a rhythm and can go. </div>
<div>
<br /></div>
<div>
I reach a point where I have gone a distance and my core muscles (stomach, back) have had enough. After I used the sticks at church. I took them other places. I take them to work, walk in with both my walker and sticks, and do several walks each day with the sticks. I have taken them out on the bike path. One day I went a bit too far on the bike path. I decided to do an out an back and I made it out fine, but coming back was questionable, and there were no stopping points and nothing to grab. It felt like being dropped in the middle of a body of water with limited swimming abilities and no one near, and having to figure out how to make it to land. Step by step I gradually made it, but I reached a point when I was at the end of the path and had to get to my car, across a parking lot that was a bit uneven, and my core muscles were done. I made it about halfway and found a curb with a fence right behind it and I sat and rested. Whew! The gift of a curb! In days where I couldn't do as much, this curb wouldn't have helped, because I couldn't have got up from it. But these days I can get up so after resting, I got up and made it the rest of the way to my car, deciding that the next time I decide to do that walk, I'll take a friend.<br />
<br />
One last thing about walking sticks... they are not ski poles and I am not using them to train for this year's ski season. It is kind of funny how many people comment on my "ski" poles and wonder if I am using them to train for skiing. I try not to roll my eyes when someone says something about my "ski" poles since it did used to think that was funny.<br />
<br />
Walking sticks are only one part of 2018, but they are the most difficult part. I am getting better with them, but I have a long way to go to feel really comfortable with them. Because I use them, my skiing is actually better, so it's a side effect, not a reason. This year in December I skied once. I ski standing using something that looks something like a walker and is called "ski legs." Last year I leaned on the ski legs with my arms holding my body. This December, I tried not to put weight on my arms and instead use my legs more. It has worked! By the end of the day I could feel my hamstrings working. The next day my hamstrings were sore which was very exciting because my legs have not had that post-workout soreness for at least 20 years. That feeling of soreness means they were really working - who knew it is so exciting to have pain? (recognizing it is a certain type of pain that also goes away)</div>
<div>
<br /></div>
<div>
Then there is the track. I do keep getting faster although I know I am very close to a speed limit unless I can figure out how to walk without locking my knees with each step. In late November I broke 8 minutes going once around the track - that's a 400 that in high school I did in under 65 seconds so I sent an email to my high school coach to tell him I only had a few minutes to go to get back to my high school time. On the treadmill I am now walking 3.2mph for 16 minutes - the treadmill supports 25% of my body weight so I can walk faster than over ground. Again I am very close to a barrier of speed that I can't break unless I figure out how to walk without locking my knees. But you never know. At physical therapy we joke that one day I will break out like Forest Gump did and someone will yell "Run Beth, run!" as the Bioness devices I wear on my legs pop off and I begin to run.</div>
<div>
<br /></div>
<div>
Bioness! New this year - there are no longer heel sensors or remote controls because they have a new model where a signal is sent to my lower legs when I lift my leg (instead of when I land on my heel). This is very exciting. Also, there is an app for Bioness that counts the steps I take. Unfortunately I used this a bit too much and got too excited, so my shoulders (that I use when walking) got injured and I had to take about a month off and still am being careful. Part of this is that I am not 25 anymore. Because the app then started not working due to an iPhone upgrade, I realized I don't need my Bioness leg devices everywhere I go. I need them to walk long distances and I also need them if I want to make sure my right leg isn't swinging out and around, because the Bioness helps my legs to go straight.<br />
<br /></div>
<div>
There is a summary of 2018, but it is a pretty limited summary. It has been a fun year. A lot happened. I have come much further that I expected. I have much further to go. I hope to write more in this blog in 2019, and I hope what I write means that I am continuing to improve. Hope can disappoint, but hope can also bring things like what has been happening to me. I feel lucky. </div>
<div>
<br /></div>
<div>
And I have to figure out how to download the contents of this whole blog.</div>
<div>
<br /></div>
<div>
And always along the way, through the good times and the bad, God is there, surrounding us as we hope and as things happen in our lives.</div>
<div>
<br /></div>
<div>
Peace.</div>
ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-77004199479448359782018-04-14T22:14:00.000-06:002018-04-14T22:14:10.992-06:00Walk for MS - 2018
<br />
<div style="margin: 0px 0px 13.33px;">
<span style="font-family: Calibri;">It has been a year of breakthroughs for me, individually, as
I enter the short time in which I ask friends and family to donate to the MS
Walk so that research can continue toward ending this disease. Before I tell
about the exciting breakthroughs, here is the link to donate any amount to
sponsor me in this year’s MS Walk in May:</span> <span style="font-family: Calibri;">http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=29425</span></div>
<span style="font-family: Calibri;">Every little bit helps!!!</span><br />
<span style="font-family: Calibri;"><br /></span>
<span style="font-family: Calibri;">This past year has been very exciting. I have been on Ampyra
for 8 years.<span style="margin: 0px;"> </span>It is a medicine which is
only supposed to improve walking speed by 25%. But in 8 years on Ampyra, I
haven’t had an MS attack (when things get worse all of a sudden). And in those
8 years I have improved so much in so many things - not just walking.</span><br />
<br />
<span style="font-family: Calibri;">This past fall was a surprise.<span style="margin: 0px;"> </span>Pretty suddenly, I began to be able to stand
up straight without a huge arch in my back - standing and feeling relaxed. I
began to be able to stand for more than 30 seconds without getting tired. Now I
can stand without getting tired for I don’t know how long - at least a half
hour. And then I let go of my walker's support when standing. I can hold that
for quite a while. Near Christmas, I got another gift. From sitting on the
floor, I stood up without holding onto anything. It has been probably 16 years
since I have been able to do that. In recent months I timed myself walking
around the high school's track and walked a lap in 9 minutes and 30 seconds. For
perspective, I didn’t used to be able to walk 30 feet. </span><br />
<span style="font-family: Calibri;"></span><span style="font-family: Calibri;"><br /></span>
<span style="font-family: Calibri;">And so I have been leaving my wheelchair in my car and
walking most of the time. I leave my wheelchair in the car when I go to work. I
still go to physical therapy twice a week and am walking 2.9mph for 16 minutes
on the treadmill there - I never thought I would go faster than 2.0mph. When we
went to the beach in March, I navigated through the sand with my walker (not
easy!) and got to experience the waves hitting my legs while I stood on the
beach, digging in my toes.</span><br />
<br />
<span style="font-family: Calibri;">A few weeks ago I went to see my rehab doc for my usual
checkup. He checks a bunch of things, including my leg and arm strength, which
he ranks from 0 to 5 where 5 is “normal” strength. My arms always get 5s. My
legs used to get 1s and 2s. Six months ago my leg strength got 2s and one 3.
This time I got all 4s for leg strength. That is due to the breakthrough this
past fall.</span><br />
<br />
<span style="font-family: Calibri;">And, for the first time ever, this past ski season I stood
up to ski instead of sitting. It is amazing how much more I can see around me when
standing to ski than when sitting, because I am so much taller. I can see more
mountains in the distance and I can see the expanse of the town below me. I was
so happy when this happened and kept exclaiming to my instructor how much I
could see and how amazing it was. </span><br />
<br />
<span style="font-family: Calibri;">One last thing. My daughter is 15. She got her learner’s
permit. Driving with her tests me as I can’t control the brake. But because I
can now move my feet and toes, my imaginary “Mom brake” on the passenger side works
well. Unfortunately it is still imaginary so it can’t stop the actual car. </span><span style="font-family: "Segoe UI Emoji",sans-serif; margin: 0px;">😀</span><br />
<span style="font-family: "Segoe UI Emoji",sans-serif; margin: 0px;"><br /></span>
<span style="font-family: "Segoe UI Emoji",sans-serif; margin: 0px;"></span><span style="font-family: Calibri;">It has been an amazing year. What would be more amazing is
if there were a cure for MS. What would be amazing is if you, the people who
are reading this, could find a way to donate, as so many of you have done for
years - to sponsor me in the MS Walk, no matter if it is $1 or some huge amount
of money - so that someday we can say there is no more MS - so we don’t have to
look for someone to improve - but so that we can say people do not have to even
be diagnosed with this disease. That is my great hope.</span><br />
<br />
<span style="font-family: Calibri;">Thank you for all you have done in the past in terms of
sponsoring me. Words cannot express how grateful I am.</span><br />
<br />
<div style="margin: 0px 0px 13.33px;">
<span style="font-family: Calibri;">Much love.</span></div>
<span style="font-family: Calibri;">Peace.</span><br />
<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike><span style="font-family: Calibri;"></span>ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-42172937422477671412018-01-10T22:00:00.000-07:002018-01-10T22:00:03.278-07:00Feeling the 400<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">Back in high school, my favorite race was the 800. That’s 2 times around the track. My second favorite race, even though I really only did it during relays, was the 400. That’s once around the track. That means that I was a middle distance runner. And what I loved about those races was that I went all out in them, without as much pacing as longer distances, coming to the end completely out of breath - having gone my fastest the entire race - with nothing left to give - giving my all - I loved that feeling. </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">The past 7 or so years I have gone back to the track to walk that same 400 that I used to run all out. At first it was a marathon to me, taking an hour. And it always has felt like a distance race these past 7 years, where I need to pace myself so I make it the whole way without falling apart. But the most recent time when I went to the track I found my middle distance self again - not realizing it at first - but having a feeling that something was different. I went all out, without pacing, coming to the end completely out of breath - having gone my fastest the entire race - with nothing left to give - giving my all - I loved that feeling.</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">My goal was to break 10 minutes, and to do that, I knew I had to start fast and just keep going, without worrying about pacing myself - without fearing I would fall apart. So I started fast and thought these things to myself:</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"> (First 100) turnover, leg turnover - Rhythm - keep the rhythm all the way around the track - 1 2 1 2 1 2... </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">(first bend) shorten your strides, keep the rhythm, get ready to GO on the backstretch - </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">(backstretch) GO! - open your stride - keep a rhythm - 1 2 1 2 1 2 - long strides -</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">(final bend) heel. heel. heel. rhythm. rhythm. rhythm. - push it in - win the race - don’t let them catch you - </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">DONE! Breathe (gasp) - relax - check the time - that had to be under 10 - and it is 9:25!</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">Those thoughts - what wasn’t there that used to be there - were thoughts of how I was slowing - there was no slowing - and instead there were only thoughts of increasing momentum. Thoughts came back of races where I didn’t “kick it in.” But not this time - I kicked it in. And that is how I realized I found my middle distance self again - because I gave everything I had for that finite 400. It was all about keeping leg turnover, going as fast as I could - changing the rhythm a bit when the track opened - and then finishing strong, completely out of breath - giving everything - and that is the amazing feeling I love. </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">Some say people should not dwell on the past or “live” in the past, but my past drives me forward - I am still the same person - who just never got to break times that were so close to being broken as a runner, when things went wrong and I couldn’t finish races as I wanted -but finished feeling as if my body was just crumbling into a pile of nothing. </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">Now I chase different times - 10 minutes for a 400 - and when I finish and do not crumble - it feels amazing. Gasping for air at the end while still standing feels amazing. I will never forget these times. </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">There is much that has changed in the past few months for me. It is as if a nerve connection that had been broken for a very long time got connected overnight. I can stand without holding onto something. I can stand up from the floor without holding onto something - that is so new and was a big surprise as I had been trying to stand for some time when all of a sudden, one day, it just happened. </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">Now that I don’t use my wheelchair much, I have figured out how to put it into my car without having to take all the pieces apart. Wish I could have done this when I needed the chair more, but oh well. Imagine this scene: I was in the parking lot of a store attempting to hoist the whole chair into the back of my van when a nice guy came to offer his help. Me: “No. I. Am. Trying. To. Learn. To. Do. This. Myself.” Nice man: “Well, ok, but I thought I would let you know that your tire there flattened out and that is why it is stuck.” Oh... My mom showed up and it was in and I proclaimed with a big smile, “See?!!” And at the next place I insisted in trying again myself. That time she informed someone who was coming to help that I was working on doing this myself. And we all laughed. And at the next place she informed me that I should walk and leave my chair in the car, which I did. </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">I told my husband recently that it is more difficult for me to use my wheelchair in places because it feels a bit ridiculous and really feels like I should be walking. He asked, “why don’t you?” And part of it is knowing my walking looks pretty goofy. To this he asked “Who cares?” Well, someone close to me does care and would rather I use my chair than walk, and I explained this to him. His response: “This is your life, not theirs.” Yes, it is - it goes deeper - it goes to knowing people look at me strangely - to walk I stick out more - I get more questions - or I used to get more questions. But he is right and so I am trying to move past these anti-walking thoughts I have.</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">I need to live my life. If I want to walk, and I can walk, I should walk. So we went to see the musical “Chicago” on my birthday this year downtown. And I walked - and it really wasn’t that far. The people who opened the theater doors for us smiled at me. The ushers smiled at me. I think they are used to seeing me in my chair. And for the next production, I walked. And I realized funny things like there are a lot of people who are shorter than I thought they were!</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">I walked into Target to shop for something, walked into Walgreens and shopped for multiple things, and have walked various other places where I used to wheel. I smile and people smile back and they don’t question if I need help as much as people question if I need help when I am using my chair. That is intriguing to me. </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">If you made it this far, thanks for reading about all that is happening in my life in surprising and unexpected ways. </span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">And, as always, I feel God is on this “journey” with me, even as I become more independent and want less help, thinking “I got this!”</span></div>
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal; min-height: 20.3px;">
<span style="font-family: ".SFUIText"; font-size: 17pt;"></span><br /></div>
<br />
<div style="color: #454545; font-family: ".SF UI Text"; font-size: 17px; font-stretch: normal; line-height: normal;">
<span style="font-family: ".SFUIText"; font-size: 17pt;">Peace. </span></div>
ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-33310916561843805212017-12-12T20:50:00.000-07:002017-12-12T20:50:24.801-07:00DecemberI hardly write this blog anymore. There are multiple reasons. I wonder if anyone even looks at it anymore. Several people have told me I should compile all the entries and make a book - maybe someday that will happen. I’m writing this entry just for me, but this blog is a good spot to put my thoughts.<br />
<br />
December comes each year and used to be a happy time every year - it’s my birthday month - it’s Advent and then Christmas. And then one year something happened that changed everything and made everything so hard - impossible. Since then each December comes and each December I am met with a sense of dread, often losing my appetite and when I look at food, getting the feeling that I can’t eat anything.<br />
<br />
This December was the same and I couldn’t piece together why because it has been so long that I forgot about dreading December. Years ago I was on one medication that made me feel so good that I stopped taking another medication and that was a big mistake. Over just the next few days I launched myself into a deep depression. I cried all the way to work, anytime I could find a bathroom, all the home, when I got home... my daughter was very young. One day I came home from work, drove into the garage, sighed, and strongly considered ending my life there. The only reason I didn’t proceed was because then there would be no one to pick up my daughter from daycare. And so I continued to live. I felt a presence at church urging me to seek help. I called my doctor who told me he would get me through this. I don’t think he understood how serious things were. Somehow I made it through the next few days after that day in the garage. But December was ruined. I felt fragile. Everything felt “too much.” Food would be placed in front of me and it was “too much.” I think someone else did the holiday shopping that year. Gradually I got better. But December comes each year and along with it, a feeling of dread. <br />
<br />
But there are good parts of December also. Today I walked 2.5mph on the treadmill at physical therapy for 16 minutes, and I have never walked that fast since my comeback started - and certainly not for 16 minutes. I keep gaining strength and getting faster. I can stand for extended periods just holding onto my walker with one hand. Around our house I am using crutches instead of my walker. And all this is exciting.<br />
<br />
Life is such a mix - hold on - it’s quite a ride. And God is with us, through it all.<br />
<br />
Peace.ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com4tag:blogger.com,1999:blog-6419188729656049450.post-54000896730383956802017-06-10T14:32:00.002-06:002017-06-10T14:32:27.107-06:00Grateful Today is such a big day. It is my parents' 50th wedding anniversary. It is also my daughter's dance recital and the first time she has a real dance solo (Scuttle from The Little Mermaid). So it has been a very hectic week as she is also in a musical theater camp, so I have gone between camp and dance dress rehearsals, work and physical therapy, all as summer hits, the temperature rises, and I find myself in situations where the air conditioning doesn't seem to be working, and my whole body is numb. And I go on. But 7 years ago so much was different - this week would not have been possible. My daughter is 14. 7 years is half of her life.<br />
<br />
The big thing is that 7 years ago today I went on steroids for the last time - it was the last time I had an "attack" - when things get drastically worse all of a sudden - walking becomes impossible - energy is gone - standing may or may not happen - a lot of time is spent "connecting" with the floor.<br />
<br />
But then I went on Ampyra which works for only about 30% of the people who try it. And I felt my balance come back. And my legs felt stronger. And I began to be able to stand straighter, and walk further. Then I got Bioness devices for my legs which help me to walk. Then I could write again. Other things work better as well. I started physical therapy. I went from only being able to walk 50 feet to walking once around the track in an hour.<br />
<br />
Things continue to improve. I now walk around the track in under 13 minutes. I keep improving to this day. I have the energy to make it through this week. My daughter knew me for 7 years getting worse, and for 7 years improving.<br />
<br />
I am grateful. I am grateful someone asked me if I planned on trying Ampyra. I am grateful for the physician who jumped through several hoops to get me on Ampyra. I am grateful to my family and friends who have always supported me. I am grateful to be here today, watching my daughter dance, doing what seemed impossible, and continuing to move forward, on my journey, with God there along the way, through the bad, the good, and the impossible.<br />
<br />
Peace.ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-26697635743418832382017-04-20T08:22:00.000-06:002017-04-20T08:22:57.642-06:00BamMy stomach didn't feel quite right throughout the night as I tried to sleep in a hotel on a work trip this week. When I awoke to get ready for the day, not feeling quite right, I went to the bathroom, in front of the sink, to stand. But instead of standing, my feet slid under me and I landed on the floor. This really was not how I planned to start the day. And then I had the realization that I had a fever. Fevers with MS mimic having an MS attack, where all of a sudden, a person can't walk.<br />
<br />
There I was, on the floor, in a strange state of wondering what exactly I should do next. Gone was the strength to pull myself up onto my wheelchair (I use a wheelchair on things like trips, for longer distances, etc.). When I removed the cushion from my wheelchair to make the seat a bit lower, I still wasn't strong enough to pull up onto it. My cell phone, in case I wanted to call someone to help, was in the next room, seemingly a world away. Eventually I dragged myself to a lower chair in the bedroom, rested, pulled onto that chair, rested, took Tylenol, and eventually re-started the day, a day which was slower as I struggled with a stomach bug and keeping my fever under control.<br />
<br />
What this reminded me was the uncertainty that MS brings. While a fever caused me to suddenly be unable to move, that is because I have probable MS and cannot tolerate the heat. MS itself can cause someone to wake up one day and be unable to move, for no reason, out of the blue with no warning. I have been very fortunate to not have had an MS attack in almost 7 years, to be getting stronger, to be able to stand up each day. And now I am fine - the fever is gone. But this was a stark reminder of the unpredictability of MS, and the need for more research toward either a cure or a vaccine.<br />
<br />
The good news is that you can help! I am raising money, as I have done for quite a few years, through the MS Walk which is held May 6. You can sponsor me by using this link to donate:<br />
http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=28339<br />
<br />
And, on this link, you can see a picture of me running in college!<br />
<br />
There are also good things that have happened this year in the search to eliminate MS:<br />
- For me, with Ampyra and physical therapy over the past almost 7 years, I walked under 13 minutes one time around the track. Yes, I am the only person<i> </i>I know timing myself doing laps around the track using a walker! To put this in perspective, I used to only be able to walk 30-50 feet. After I started taking Ampyra I walked around the track in an hour. Gradually I got faster - 40 min, then 30, then 25, then 20, then<i> </i>I wondered if<i> </i>I could walk it in under 15 minutes, and I did. And now I have walked it in under 13 minutes. <br />
- At physical therapy I am now walking 2.1mph for 16 minutes in a row. To put this in perspective, I started 3 years ago walking .5mph for 5 minutes. Zoom!<br />
- This year<i> </i>I started to be able to color using pencils. Seems simple. Before Ampyra,<i> </i>I had trouble writing at all.<br />
<br />
- The first therapy to slow the course of MS for people with all kinds of MS was recently approved by the FDA. This treatment is the first treatment to slow a cruel form of MS called Primary Progressive MS, which is a type of MS that gets continually worse from the time it starts (whereas other types of MS have remissions - times when people do not get worse). This is the biggest breakthrough in years!<br />
<br />
As always, thank you so much for your support, which many have given over many years.<i> </i>I continue to hope that through each and every donation, there will be a day when no one has to hear the words, "You have MS."<br />
<br />
Peace.<br />
<br />ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0tag:blogger.com,1999:blog-6419188729656049450.post-20095791429555136042016-12-24T09:59:00.000-07:002016-12-24T14:27:01.091-07:00Through the noiseLast Christmas Eve I wrote about finding silence with my cup of coffee each morning, and thinking of my godparents and how they were great role models for me, and how last Christmas was the first Christmas without both of them.<br />
<br />
I really did love my morning coffee and quiet time. After an iron deficiency problem was identified, triggered by my diet of too much coffee and dairy, not enough foods containing iron, and resulting antacids to combat the too much coffee, I gave up coffee, which meant no more antacids...... But I miss my period of silence in the morning and instead find myself trying to get a bit more sleep and then rushing to get ready.<br />
<div>
<br /></div>
<div>
Earlier this week I had a somewhat panicked feeling - a friend of mine decided to stop what had become absolutely miserable chemo treatments and choose quality of life over quantity, which means that she is now in hospice. I hadn't heard from her in more than the usual time period in which I hear from her, but I didn't want to bother her either, knowing there is a ton of fatigue and pain right now. I finally did reach out and there she was - sending me a message back that she is ok, has pain and fatigue, but it is being controlled as much as possible. I struggle with this - not wanting to ever lose my friend, but yet knowing that life never goes on eternally here on earth. But I have my friend for this Christmas, while I remember loss last Christmas.</div>
<div>
<br /></div>
<div>
Advent does tend to have this strange cycle for me - we should experience joy, and some years I do, and yet other years not so much, and this year seems to be a mix.</div>
<div>
<br /></div>
<div>
</div>
<div>
This year my daughter started doing competitive dancing which makes me feel always on the go to something, between that, working, and trying to keep the house so we can still see the floor. And in December, with the Nutcracker, she had plenty of dance rehearsals.</div>
<div>
<br /></div>
<div>
In between work, dance, and other things, somehow I found time to get presents this year. That was a challenge.</div>
<div>
<br /></div>
<div>
Physically, I am doing very well. I keep improving, thanks to Ampyra and physical therapy. It might be invisible to most, because improvements tend to be in functional areas, like I can now pump gas without feeling like I am going to fall. I have started to climb steps without needing someone to always lift my legs for me. When I go to concerts this really gives great concern to people who do not know me and tell me I can always sit where there are no steps. What?!! Give me steps - they are fun! And the view from higher is often better than the lower view.</div>
<div>
<br /></div>
<div>
All of this stuff happening is noise. As I was preparing a devotion for church council last week, I got to the prayer part, where I was to say a prayer. And I didn't feel like filling a prayer with words. So I found silence in the midst of prayer. And it hit me that silence can be found there - finding those moments to pray, one can simply insert silence. And silence has its own way of being beautiful.</div>
<div>
<br /></div>
<div>
Merry Christmas, and as you enjoy great joy accompanied by the noise of spending time with family and friends, may you also find moments or times of silence where there is so often</div>
<div>
<br /></div>
<div>
Peace.</div>
<div>
<br /></div>
ms'er faithhttp://www.blogger.com/profile/14750127973286035852noreply@blogger.com0