Monday, April 15, 2019

MS Walk - 2019

This 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.

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.

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):
https://secure.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=30400

There's a thank you video on that page - check out the end of it!

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.

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.

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.

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.

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.

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.

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.

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?

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.

Thank you for all you have done in the past in terms of sponsoring me. Words cannot express how grateful I am.

Much love and peace to all.

Friday, March 22, 2019

It'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.

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.

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?!"

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.

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.

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.

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.

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.

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!

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.

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!

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."

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!

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.

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!).

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.

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.

Peace.  It's here - somewhere. Hold onto it for me.

Tuesday, February 12, 2019

What 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.


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.

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.


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.


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.


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.

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.

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.

Peace.

Friday, December 28, 2018

Ending 2018

This 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.

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.

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.

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.

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.  

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.

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.

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)

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.

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.

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.  

And I have to figure out how to download the contents of this whole blog.

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.

Peace.

Saturday, April 14, 2018

Walk for MS - 2018


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: http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=29425
Every little bit helps!!!

This past year has been very exciting. I have been on Ampyra for 8 years.  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.

This past fall was a surprise.  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. 

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.

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.

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.

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. 😀

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.

Thank you for all you have done in the past in terms of sponsoring me. Words cannot express how grateful I am.

Much love.
Peace.

Wednesday, January 10, 2018

Feeling the 400

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. 

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.

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:

   (First 100) turnover, leg turnover - Rhythm - keep the rhythm all the way around the track - 1 2 1 2 1 2... 
(first bend) shorten your strides, keep the rhythm, get ready to GO on the backstretch - 
(backstretch) GO! - open your stride  - keep a rhythm - 1 2 1 2 1 2 - long strides -
(final bend) heel. heel. heel. rhythm. rhythm. rhythm. - push it in - win the race - don’t let them catch you - 
DONE! Breathe (gasp) - relax - check the time - that had to be under 10 - and it is 9:25!

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. 

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. 

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. 

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. 

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. 

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.

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!

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. 

If you made it this far, thanks for reading about all that is happening in my life in surprising and unexpected ways. 

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!”


Peace. 

Tuesday, December 12, 2017

December

I 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.

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.

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.

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.

Life is such a mix - hold on - it’s quite a ride.  And God is with us, through it all.

Peace.