MS Walk 2025

This year I am doing the MS Walk again, and I am asking for the support of friends and family, again. I’ll be doing the walk virtually, because I also have 2 choir concerts that weekend and need to be rested for those. 

Why is donating via the MS Walk important this year?

Donating this year is important for several reasons. In March of 2025, Congress cut the only federally-funded stream for MS research, called the Multiple Sclerosis Research Program (MSRP), for this fiscal year. The MSRP was established by Congress in 2009 specifically to address the higher incidence of MS in military service. The MSRP had recently been funded at $20 million per year, and it actively supports 70,000 American veterans living with MS. For the military, MS is a presumptive condition, which means that it is presumed to be connected to military service if someone is diagnosed within seven years of an honorable discharge.

Given this cut, it seems likely that an additional $20 million raised would help close this gap and any near-future possible gaps. I’ve known several people in the military who have been diagnosed with MS and it is heartbreaking to know that they have served this country and then been diagnosed with MS. 

Donating this year is also important because donations will continue to fund research as well as programs that serve people with MS. There are still people who wake up unable to move because of this disease, and although treatments have slowed the progression of MS, MS remains a chronic condition for almost a million people in the US. 

To brighten things up a bit, an update on me….. I’m doing very well and am still improving. 

Racing: I’m training again for the Bolder Boulder (10k race on Memorial Day).  I have some cheerleaders where I do my long training walk almost weekly. One guy stopped me a few weekends ago to say “I remember seeing you here a year ago, and your walking is much, much smoother now…. Keep going.” And so I keep going with the hope that 6 miles won’t feel so hard by Memorial Day. 

Mobility: We have traveled a few times to Boston lately since Lori is a senior in college. On our recent trips I haven’t brought any mobility devices with me. And on our last trip to Boston, for the first time, no one asked me if I needed help or wanted a ride through the airport. I even got to put my suitcase in the overhead compartment by myself. 

Biking: this year I figured out how to get both feet on both bike pedals of my college bike, and I am riding that bike again!! I have always loved that bike and to be able to ride it again - well, it sat unused for a long time and I’m sure people wondered when I would give it away. Never say never. 

Secrets: It often feels like I have secrets as I move through the world. These secrets are ordinary things people do that I couldn’t do for years, like standing in line, walking through the airport, carrying something while walking, writing using a pencil, etc. No one, generally, knows that as I’m waiting in line, I couldn’t stand for many years. No one, generally, knows that as I’m walking, I couldn’t walk without assistance for many years. People don’t know that I had great difficulty writing using a pen or pencil for many years. While I feel like I am holding these secrets, I also get great joy in doing very ordinary things. When I write anything, there is joy in seeing how my fingers can hold a pencil. There is joy in the small act of tying my shoes without looking at the laces because I have better dexterity now. And with this joy, I smile often. I imagine I have the biggest grin when riding my bike - it is as if I just won the lottery. 

That’s a summary of my current life. There are still frustrations - I don't look like everyone else which is frustrating mainly because it generates occasional unwanted negative commentary from anyone when I walk ("looks like you hurt yourself"). I continue to work with a physical therapist to have a better gait. Sometimes when walking and landing on my left leg, my knee locks which throws everything off and then I have to focus on landing a certain way on my left leg so my knee doesn't lock. At these times I feel like I am negotiating with a thing that has the upper hand and would rather not negotiate.

Don’t delay!! Here is the link where you can donate to support me in the MS Walk this year: https://events.nationalmssociety.org/index.cfm?fuseaction=donate.participant&participantID=617456

Thanks for all the support from friends and family over so many years. Every donation, large or small, has been and is very important. I am grateful to have such strong support every year. And I'm really grateful to all the people, like the guy at the park, who continue to cheer me on through the ordinary things I have gained back and continue to fight to improve.

2024 MS Walk

It’s time for the MS Walk!! Denver’s MS Walk is May 4, and I will be walking it in conjunction with training for the Bolder Boulder 10k. Here is the page where you can sponsor me in the MS Walk: https://events.nationalmssociety.org/index.cfm?fuseaction=donate.participant&participantID=425678

Every donation helps move toward ending MS and the devastation it causes. Thank you for all of your support of the many years I have been doing this walk. 

Yes, I am doing the Bolder Boulder this year!! Here’s what has been happening in my world over the past year:

It’s been another favorite year of my life, much like the year before it, but for different things that have happened. I’ve continued to work at improving, and the BOEC (where I ski) asked if they could tell some of my story and be one of their featured participants for 2023. Filming started last February, and here is the final video which tells my story and shows me walking in March (of 2023): https://youtu.be/ZYjIB6xqH5w?si=q-NHKUXQ5JSUCzLW

They also interviewed one of my instructors who had this to say (it’s fun to watch): https://youtu.be/OKEIQhNP_fE?si=PEny_U40dZB5iad7

In June I was honored to be asked by the BOEC to give a short talk on what the BOEC means to me at an annual fundraising dinner they have every summer in Breckenridge. I recorded my talk and then typed it up (it’s partway down this blog entry: http://msandfaith.blogspot.com/2024/02/31-years.html?m=1)

All of this reinforced that skiing has always been an important way I felt I was still an athlete. So was handcycling which I learned to do through the BOEC. Both skiing and handcycling felt half like physical therapy, half fun, and are all outside which I love. Off the slopes and trails - inside - I do a lot of physical therapy exercises which are always changing to meet what I need: balance, strength, or something else. 

Also inside, when we had bad weather, I started walking around a track at our local fieldhouse. One day when walking there, I saw a machine called the Arc Trainer. It is used by professional runners to cross train, and is as close to running as one can get on a machine without actually running. I decided to try it and it has been a huge asset in teaching my legs to turnover more quickly since that isn’t something that has come naturally with the standard walking I do. Running typically means a turnover rate of 165 steps per minute and I have worked up to 149 steps per minute (for a short amount of time) since January. I’ve also found that walking to the beat of music while using the Arc Trainer helps teach my legs to keep a consistent pace. 

Fun facts: on the Arc Trainer, I warm up walking to the song (and thus the tempo) “Walk like an Egyptian” before transitioning to my version of speed walking: “I’m Gonna Be (500 Miles)” (Proclaimers) which is 130 beats per minute, and then “We’re Not Gonna Take It” (Twisted Sisters) which is 149 beats per minute - those are my “fast walking” songs. Mid-tempo walking songs for me are most Madonna songs (True Blue

Album) and “Walk the Dinosaur.” A good ending tempo song is “One Night in Bangkok.” I just started trying to do some of these tempos when walking outside (versus on the machine). It’s much harder!! So now if you want to know how fast I am walking, you can go walk to these songs. 

Music has always been an important part of my life. I was playing the piano recently and using the pedals feels natural now, and not the exercise it used to feel in lifting up my toes. Bonus: piano music generally sounds better with pedaling. The feeling of my fingers is better too, so I had my flute repadded (it’s old and the pads that are attached to the keys were worn) and I can feel the keys better and better with time. I went back for the Kenyon College Chamber Singers reunion this past May and noticed that, in addition to being able to walk across campus to rehearsal while carrying a cup of coffee, my breath support, which is critical in singing, has improved a lot. I continue to work on this through voice lessons…. I’m not sure that my voice teacher realizes that working on air flow, being reminded to keep my chin up, and other things are also a part of physical therapy for me. But the joy of getting so much that I took for granted back, and being able to make music again the way I used to make music is hard to describe. Our cats do not appreciate it. We remain in negotiations as to what they will tolerate (ha ha).

Back to running. I have run very short distances at home when no one is watching. I walked two 5ks this past year. And as I end this email (blog) about my life right now, I think of how far I have come - from exhaustion with everything I did, to taking almost an hour to walk around the track once, to now training for the Bolder Boulder 10k - 6.2 miles. I’ve walked 6.2 miles three times in my training so I know I can do this. It’s just adding thousands of people to the mix on race day that will be a challenge. 4 weeks left. 

Thank you again for all your support, whether it be financial or otherwise. And please financially contribute, if you can, using the link at the top of this email. I’ll send pictures after the Bolder Boulder.

Peace.

31 Years

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. 

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.

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.

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.

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:

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." 

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.

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)

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."

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)

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)

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.

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.

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."

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."

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)

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.

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.

(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.)

Peace.

2023 MS Walk

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: https://mssociety.donordrive.com/index.cfm?fuseaction=donate.participant&participantID=225426

(Note: 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!!)

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.

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.

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.

As I have learned to walk again, I have been amazed by my random discoveries, realizations, feelings, learnings, perceptions, etc. 

• 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. 
• 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. 
• 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. 
• 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.
• 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!!

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.

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.

Again, here's the link to donate: https://mssociety.donordrive.com/index.cfm?fuseaction=donate.participant&participantID=225426  (see above for directions)

Thanks for your support over many years!!

Peace and Love, Beth

Beth's Momentous Firsts:

• Escalators! First time up and down an escalator (first in Denver, then in Boston)
• Hawaii! First time walking on a beach, into and out of the water, without Bart
• Bye Bye Bart! First trip without Bart the walker (Boston)
• Bart! Currently has gone into retirement in our basement
• Track! 400, 800, mile on the outdoor track, no sticks
• Steps! Up/down 1, 2, 3, and 4 steps without touching a railing
• Home! Walking with and without holding cats, without leaning on walls, counters, no sticks
• Standing! With eyes closed, no sticks: 1 min; eyes open left foot only 30+ sec, right foot only 30 sec
• Choir! Standing for a choir concert
• Church! Processing into church with our church choir, walking up to read the lesson, no sticks
• Skiing! Off tether when stand up skiing, got on the lift myself, got off the lift with some help
• Hiking! Rocky Mountain National Park, Golden Gate State Park, Castle Rock, Bluffs 
• Neighborhood! 1 mile, left sticks at home

Full Circle

My hands 

Have served me well

My hands

Found their way over piano and flute keys to make beautiful music

Brought music into my soul

Left those keys when there was an unexplained loss of feeling in my fingers  

My hands 

Carried coffee cups through parking lots, into work

Reached out and steadied me by touching walls when I lost my balance or tripped

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

My hands

Pushed a baby stroller when my daughter was young, as a way to transport her safely while I walked

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

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

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

My hands

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

Gripped walking sticks when I transitioned away from my walker because I had found my balance again

Alternated holding one walking stick when I transitioned from two walking sticks to one

My hands

Have reached for water, reached toward walls

Have pulled me through water, pulled me toward walls

of the swimming pool as I strengthened my core over the last few years

My hands 

Now hold walking sticks in the air as I challenge myself to keep walking without letting the walking sticks touch the ground

Now want to reach out as a matter of habit when I walk around my house

Now no longer need to reach out around the house because I have found my balance

My hands

Are unsure what to do as I stand without assistance

Are unclear what to do as I start to navigate the world without assistance

Find themselves awkwardly dangling themselves in the air 

My hands

Wonder if they someday will carry coffee cups across a parking lot

My hands

Have returned to those piano and flute keys because I can feel my fingers again  

Now find their way over the keys to make beautiful music 

Bring music into my soul 

My hands

Bring

Peace

Nature in Boston

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.

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.

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.

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!

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.

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.

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.

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.

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. 

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. 

Peace.

Easter joy

There are some things you never forget - random things that stick in your mind forever. 

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. 

It was a cool, clear morning, and I was headed around a very gradual turn on a country road. 

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!!”

It made me smile. And whenever I get to Easter, that memory always comes back and makes me smile. 

Happy Easter - may you smile and feel joy!!

Peace. 

Finding Unexpected Joy

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.

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.

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. 

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? 

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. 

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. 

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.

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. 

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.

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.

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.

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? 

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.

Peace.

MS Walk 2022

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).

Here is the link where you can donate to support me in the MS Walk:

https://mssociety.donordrive.com/participant/147676

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!!

My life with MS since the virtual 2021 MS Walk:

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.

 And this year, additional humor is helpful:

• 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 all day 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.
• 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.
• 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  – a symptom of MS – for a long time.

 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.

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.

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.  

Love and peace to all.

Beth

Happiness in the middle of the storm

Thursday: 4:15am: Up! Eye drops, medicine. Swimsuit, shorts, sweatshirt, sandals, bag, go!!

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. 

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.

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. 

Release the frustration. Release the sadness. Find the small things that bring happiness. Focus on those.

Swimming - my small release. 

Peace.

Where is peace?

                                                           1993 - 2010

                                                        During this time
                                       Early each morning I would wake
                                                        Paused Frozen
     A dream 
          A leg twitch
              Reality
                                                  I run
                                                        Spasm 
                                                             Uncertainty



                                                          2020

                                                       This year
                                                         I wake
                                                    Paused Frozen
                                                          

                                                                                A dream 
                                                                                     Dad. Death. 
                                                                                            Reality   

   
                                                                                                       The way things were
                                                                                                             Be still
                                                                                                                  Uncertainty

                                                                                                                       Repeat

                                                                                                                        Again

                                                                                                         Where is peace?

                                             

My Parents on this day

This 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."

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.

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.

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.

He was so proud of all of his kids. Every time I called him he knew exactly who I was.
"Hi, Dad."
"Hi, Beth."                                 
Those words are going to stick with me.

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.

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.

27 years. He saw me get worse. And he saw me get better. And we'll run together in my dreams.

Miss you, Dad.

Peace.

Memories

Dear Dad,

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.

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.

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.

“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.

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.

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.

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.

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!!

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.

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.

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.

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?

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.

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. 

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. 

"Hi, Dad." "Hi, Beth." I can still hear your voice, clearly.

And it is never easy to lose a parent. Cherishing the memories.

Peace.