Thursday, December 31, 2015

Finish it.

So many people make New Year's resolutions that are gone within less than a month.  I used to do that, and always found the resolutions slipped away.  This year, instead of creating resolutions, I am going to relax and enjoy the year I just completed.

You see, MS really does change everything.  Even before MS entered my life, I was on the brink of things that became impossible due to MS.  As a junior in high school, we won the state championship in cross-country, and  I finished in the top 15 or so.  But at that meet, even with us winning and me placing well, I didn't feel 100% - I didn't feel like I gave it 100%.  That spring I placed second in the 2 mile, qualifying for state.  It was really unknown whether I could get in the top 2, given the field of runners.  I started in front and led the whole race before fading while my friend raced past me in the final 200.  I was ecstatic to get second!  Who knew I could do that?!  Another friend of mine got sick during the race so I am told that people were either attending to her or celebrating the victory of my other friend who passed me.  My coach at the time, Jean Ann, was probably the only one who came up to me after the race.  She said, "you know you could have won that race, right?"  And that continues to follow me through life.  My coach Jo Ann later got ALS and her baptismal journey was ended when she was only 44.  And then the following year I was set to run a race under 19 minutes, but after coming within 10 seconds, MS had crept just enough to end my "under 19" dream.  The next spring's track season was somewhat mediocre but I was headed to college which was an exciting time.  But college running was filled quickly with failure, as I didn't make it through the cross-country or track seasons.

So there has been this "not quite there" state of reaching goals in my life.  I have done some things.  I finished my masters program; I bicycled up Vail Pass; I swam a mile.  But these didn't feel the same.  I could finish so much but it wasn't the same athletically as the failed mishaps in running.

But then there was this year.  My goal was to do the best I could do in PT and get as good as I could.  And what makes this different than the other things is that my MS hasn't gotten worse.  In fact, I have grown stronger.  It has taken all year, but I have made advances.  I can stand straight, finally.  I am walking 1.9mph on a special treadmill at PT, which is faster than I have walked since the downward progression of my MS.  On the last session of PT this week, I did the 1.9mph and made it.  Through my head while walking are thoughts of "you have to fight through this," someone has got to win, and "you could have won that race."  These thoughts allow me to break the walking  into small pieces.  And I made it.

But there was one last thing.  We have a treadmill at home and I have been increasing the time I have spent on that.  I had walked for 15 minutes straight there twice, and I wanted to finish with a third time on New Year's Eve.  This made me nervous because it could become one of those things I just couldn't make.  So I broke it up, minute by minute.  Right at 15 minutes I stopped the treadmill.  Done.  I finished.  You never know how far your body will go.  But this cycles back to all the things that have haunted me and to which I think I did not finish.

Finish it.  This time I did, with Jean Ann urging me ("you could have run that race") almost every time.

Finish it.

But those Christmas card left...  I have done some but have run out of stamps.  That project just may not get done tonight.

Finish it.  The walking part.  and move onward!
And  Happy New Year, all.


Thursday, December 24, 2015

In the silence

Every morning I wake up early, get a cup of coffee, and sit alone, in the silence, contemplating whatever is on my mind at the time.  When the weather is nice, I sit on our deck and listen to the birds.  During the winter I sit in the dark kitchen.  I enjoy this brief time I have to myself, with my thoughts (even though I generally don't like to be alone), purposefully leaving my electronic device somewhere else.  The only interruption, usually, is our cat who meows because he like to hear himself talk a lot (I think).  In the process of writing this blog entry, he has attempted to wake the entire house, despite my offers to call him, pet him, and hold him. But I digress.

Lately I have been remembering my godparents and in particular my godfather.  Though we never spent time with them in a religious sense (except my godmother Helen who would send me religious cards and constantly praise God, and when my brother and I were confirmed and our godparents all journeyed to Denver to celebrate the occasion), they had a huge impact on my life, always there, always.

One set of godparents lived about 10 minutes from us and had kids about the age of the kids in my family, and we spent what I remember as every Thanksgiving and every Christmas with them.  My mom's parents lived far away and I never knew my dad's parents (only that my granddad baptized me).  So this gathering really felt like family and we had great times.

My godfather, one of the gentlest and kindest people I will ever know, was known to our family as the best cook...  ever.  Every Thanksgiving and Christmas we anticipated what new appetizer he would make, enjoyed "his" special potatoes, his" sweet potatoes, and "his" fill-in-the-blank.  At their house (which we preferred because they had a basement where the kids could retreat), I remember him always choosing the (classical) music, deciding on wine for the adults, and pouring the wine. He always seemed so calm in putting everything together right before we ate, at a time that can create total chaos.  He was often the calm in the midst of chaos.

At the end of each meal, the kids had to plot to be "excused," so we could go to the basement to play a game, or watch a movie, or do whatever.  It had to be just the right moment - if someone asked too early, then we would have to sit for longer and listen to the adults talk about something boring.  So we would exchange eye-contact - who was going to ask, and when.  Then we would politely (so as not to have to sit again) get up...  and then Dart!  To the basement!!  These were the best of times.  At the end of the night, it was my godfather who would come determine if the movie we were watching was done and if we were ready to go home, or he would make us aware that it was getting late.  He was always calm, the voice of reason.

Outside of our twice-a-year traditional gatherings, he taught in my dad's department and my godmother taught in another department, while my mom taught at a different university.  We were the kids of the university professors, and so I suppose we had the same sorts of schedules, meaning our parents tended to have the same breaks as we did.  So we would see them at other times.

One year, when I was an adult just after graduating from college, their family found what seemed to be a kitten huddled in the back of their garage.  They rescued the malnourished kitten and brought her back to health, to discover she was old enough to be pregnant.  Right before I moved back to Colorado, her kittens were born and they gave one to me.  He was a very special cat who died too young, but we had special times.  They kept the kitten who was born with 3 legs, but who outlived all the other cats in that family.  Like me, they were "cat people."  We love our cats.

Etched in stone is the image of my godparents walking hand-in-hand down the bike path that was very near their house - the same bike path where I often rode my bike, ran, or walked.  My mom and I would walk on that path almost every night during the summer when I was in high school and college.  But that was the image of happiness - my godparents hand-in-hand, not in a hurry at all, walking along that path.  They never saw me watching this - I didn't want to disturb what seemed special.

Near this Thanksgiving I had a moment of panic.  I was making "his" sweet potatoes (we continue his" recipes! but where was the recipe?).  Crisis!  I called my brother who didn't have it but told me to give him a call.  So I did and he told me I was lucky because most recipes now are with his daughter.  Yes!  The tradition could continue.  We went to my brother's house with "his" sweet potatoes and my brother made "his" mashed potatoes.  Our daughters sat through dinner and at some point made the move - "can we be excused?"  And then they retreated... to my brother's basement.  And the rest of us continued our adult conversation (which I imagine thegirls considered boring). And so the cycle continues.

A few days later my godfather was hospitalized.  I went to see him. Although he never opened his eyes, I held his hand and sensed a connection.  He knew someone was there - he probably didn't know it was me but it was someone he knew.  As I was about to leave, not realizing there was a connection because he had taken his hand away from mine, he reached out and took my hand, in the gentle way that perhaps he could only do.  And some time after that, I left and told him his daughter would be there the next day. And she was.  Thanks be to God for that.

I often have regretted not seeing someone at a time when they needed to be seen, not sending a card when a card needed to be sent, and not being able to say "goodbye" to someone.  But with my godfather, I got to talk with him days before he was hospitalized.  I got to see him in the hospital, to hold his hand, knowing it was probably the last time, and to tell him that I loved him.  Moments like these are where we find God.  In the silence.

Merry Christmas.


Tuesday, December 1, 2015

... pause ...

Where I work there was some confusion about when time needed to be taken off by the end of the year.  Turns out the end of the year is December 12, and I had 2 days to use.  I took them last week, during Thanksgiving break.  My daughter was out of school so that seemed ok.  But what I did not expect was to realize, in the process of these days, that my body needed a break.  Funny how when forced to pause a bit, with no plans, you can realize that pause was what was needed.

What I had not realized was a bunch of stress I had was triggering migraines that did not want to leave.  Continuing to look at the computer screen was not helping.  Yet when leaving for a few days I wanted to take my laptop with me to get some work done at home.  I talked myself out of that.  Something told me to leave everything and take a break.

With that break, migraines decreased.  There was a feeling that a migraine was just sitting there, waiting to be triggered, but those feelings diminished.  I had to take a day off from the treadmill due to the "migraine about to happen" feeling.  It's a ticking feeling in my head that is hard to describe.  It's a reminder that the migraine can return with one bright light, one loud noise, or something else.

And so what did I do with the pause time?  I realized I am not used to it.  My daughter had no activities so there was nowhere we had to go.  There was no reason to wake up early.  Usually I get up early even when not working due to leg spasms, but those just didn't happen, so I found myself lying in bed at peace, paused, and finding it very strange.

We went to the mall.  We didn't have a big reason to go which was also strange.  We meandered, not really feeling comfortable without some kind of agenda or list of things we needed.  We discovered that Black Friday sales really start the whole week beforehand, when stores are pretty empty.  I walked on our treadmill at home and felt good.  I thought a bit less about work and that is a good thing.  Family time.  I realized the importance of being with family.

I watched perhaps too much of the news and got annoyed, bothered, frustrated and sad.  I got to send messages to Facebook friends more regularly and have missed that connection source.  I got caught up on some phone calls that always seem to accumulate.

I thought more about what is most important in life.  In the end, going full-speed at work is overrated. Spending time with family, meandering with no place to go, and doing general catch-up is a good way to find that pause.  I tried to explain that to someone today but they didn't see it.  Maybe some don't see it?  I have a few close friends who have very significant health concerns right now.  I want to be with them.  I pause to reflect time spent with them, one who knew me when I was born - our closest family friend - all those good times we had - the laughter, the smiles, knowing I could always count on them for support.  Pause.

This was right as we approached Advent - a time to watch, wait, listen - and I experienced it a bit early.  The work of God is everywhere if we just pay attention.  And now we are here - Advent - a time when pausing can continue, as we look around us for glimpses of God.  And those glimpses are everywhere.


Saturday, November 21, 2015

It Must Be Friday!

Or, a series of unfortunate events upon which one can look back, pause, and laugh at points.

It started simply enough - reminding my daughter of a couple things, my husband of a couple things, and getting ready for the usual Friday physical torture session on the treadmill.  This session on the treadmill was shaky legs day, which is predictable only because I hadn't walked much on Thursday, so my legs needed to release tension... when this happens and I put pressure on them on the treadmill, and as the speed is increased, they shake, we slow the treadmill speed, wait for legs to stop shaking, and gradually increase the speed again.  Then at about 7 minutes, I started to feel hot which is never a good sign for me.  But I made it through 16 minutes.  Done! Time to go relax (physically) at work.

In the parking lot at work, I put my wheelchair together like I do every day.  It's a long walk to the building and the number of doors doesn't work with a walker, so I wheel in.  While wheeling across the street, I saw someone driving into the garage who might have had a middle eastern background but that is only a guess at best.  (While wheeling I was contemplating how people like him are treated by people he doesn't know might have changed lately.)  And I kept wheeling...  And then I got to where I had to bump myself up a very small bump.  I couldn't do it.  Was my foot in the way?  We're the tires turned wrong?  Was I really that tired from walking on the treadmill?!!

And then the same guy who I had seen in the car driving into the garage came running to ask me if I was ok and needed help.  By this stage I was confused and looking down at the wheelchair wheels and didn't really want help because this is just how I am, but how in the world was I so stuck?  As soon as the nice guy bumped me up, we realized the wheel wasn't being held in position.  We realized  the wheel was essentially not there.  Quite clearly I could not move.

The guy tried to figure it out.  Clearly a piece was missing.  And now I was worried that I would make him late for work.  We determined he could lean me back on the back wheels and get me into the building, then through 2 sets of doors, and an elevator.  That could not have been easy.  I held his lunch box and 2 bags and he held my laptop.  Trust in strangers suddenly becomes critical in such situations.  Then someone where I work came along and helped.  (But I have to say that when random things have gone wrong and no one I know is anywhere, and if I were to do a pie chart of race/ethnicity, Caucasians like me who come running to help are a tiny slice of the pie.  Just an observation.)

Continuing with my day, I made it to my desk!  And I had the beginning of a dreaded migraine because in addition to not walking much the previous day, I didn't have much to drink.  Bad combo!  After drinking a huge container of water (but the migraine had already started - too late), of all the ridiculous difficult things, I had to go to the bathroom.  Easy, right?  No.  Put on all my robotic walking gear.  Recruit someone to open doors.  Off I went, jolting the migraine and walking on post-PT rubber band legs.  Then back to my desk.  Then I had to ask someone to get my water bottle filled.  I hate asking for things I can normally do on my own.  Well, I hate asking for much of anything so this day was not fun.  I took medicine for the migraine but it was not going to work and I could tell that.

In the middle of this, I called the wheelchair "ER" place. Sure, they can get to you.  A technician could come to the rescue!  I was told I was his third appointment.  Good!  I should have been good to go by noon....  But then it was 2, my migraine was gaining steam, and I had no coffee which can help a migraine.  I called and the technician was on his way.  And then it was 3:15.  And someone different answered the wheelchair ER line. That person checked and the technician would be there in about an hour and a half.  What?!! Needed a new plan now.

Another bathroom adventure.  Then I walked and someone wheeled my chair to the lobby where I sat to wait for the repair guy who was there early at 3:45. By 4, wheelchair was fixed and the day doesn't sound so bad except it was because all of this stuff was out of my control, the worst of which was the migraine.

But I was ready for the next adventure - happy hour!  Now all would be ok because I had another new medicine in my car which would cure the migraine!  4:27: "Bzzzt."  "Mom, do I have dance?"  Yes, in 3 minutes.  Somehow she got there and I got to happy hour and dinner, where I took the new migraine medicine which was a mistake.  My migraine temporarily was gone.  But then dinner was done, I was back in my car, it was snowing the migraine medicine was making me tired, and I just wanted to get home.  45 minutes later I was home.  I did stay awake.  But then the medicine fatigue hit me.  And the migraine came back in full force.  And my head was throbbing.  And I just needed to sleep.  So I went to bed in clothes, no teeth brushing.

Today my head feels almost better.  I am not walking much because the throbbing could return so I am sitting here, not doing much, contemplating the past day.  I slept a long time.  And I didn't want to move.  But all is ok.

All in one day.  But today is a new day.  And that is beautiful.  And finally I have -


Sunday, November 8, 2015

Bits and pieces

July was the last time I made a blog entry.  But, I finally got my time at the lone computer in our house!  We all use iPhones, so the one computer is generally taken.  But it's my turn!

Over the past months I have thought of potential blog entries in my head, but vetoed all of them.   They seemed to all start sounding the same.  Or I thought they would be misconstrued as political and I don't want this blog to be political.  Or I thought I was complaining too much.  Or maybe everything was too good - that often happens on Facebook where everyone thinks they know what is happening in the lives of others, but they are only getting a small piece.  Or how was I going to incorporate God into something - God is everywhere, but incorporating God in every writing can be a challenge.

So, here are some some bits and pieces from the past few months with the caveat that nothing is intended to be political, too happy, too sad, ..., and God is everywhere so sometimes not everything has that God element to it..........................

We switched churches a lot growing up.  I have a lot of memories from St. Johns Cathedral in Denver, so we must have gone there a lot.  Driving past it now, it simply is not as big as I remember! We usually went to the main space there for worship, but my dad has never liked Communion so occasionally I remember going with him to a smaller chapel where there was a much smaller service.  I remember going there with just him because I liked going to church and I am not sure where the rest of my family was, but memories like this add to my confusion when asked who influenced my faith?  I don't know - I remember being interested in church always, and wanting more, and not getting more in terms of church.  We had a discussion of different types of churches and services today in church so I randomly thought of this.  Bits and pieces.

Guns.  Great transition!  I am fine with people owning guns (well, I don't see why background checks are a big deal - you have to have a background check for many things like being employed somewhere).  Go hunt with your guns.  My daughter thinks guns should be outlawed and she is a vegetarian so it really might work for her.  I digress.  If you see someone walking down the street, openly carrying a rifle over their shoulder, how do you feel?  Safe?  I don't.  So, fine.  Guns.  Get a concealed weapons permit.  But honestly if I see someone carrying a gun down the street, I am getting away!  I think people should not be allowed to openly carry guns outside.  Get a concealed weapons permit.  I think those are the people who keep us safe.  There.  My opinion on guns.  Bits and pieces.

Maybe you are wondering, since this blog is on MS and faith, where the MS part is!  Well, that is the happy part.  I am doing well.  In the last entry I was experiencing a bunch of pain.  That has been gone for a while.  It was horrible pain and I can't control when it will come again, so I cherish each day without it.  That's the thing about MS.  You never know what "presents" you get when.  I continue to improve although much of that is invisible.  I am getting faster and have better balance.  Last week the electricity at work went off and I walked down 40 stairs to get to the ground level.  As soon as I got there, the power came on.  Perhaps that is God's sense of humor.  Way to go, Beth - you got down the stairs - here is some light just for you!

People.  People are always intriguing.  Where I work now I wheel uphill to get into work.  People always want to push me.  Did they ever think maybe I like to go slowly so I can have a last feel and look at the outside, before venturing inside for the day?  A person remarked to me how long things must take.  I told her that you just get used to things.  This is true.  But many people get used to many things and if you have a couple kids, I bet you are a bit slower than without those kids!

Most frequent comment by people to me: "Wow.  Looks like we need a blue button there."  No, we don't.  Blue buttons are supposed to allow doors to be opened automatically.  They are expensive.  I would rather open the door myself.  Common action: push the blue button for the person who might use it!  Guess what?  By the time they get there, the door is going to start to close.  If they want to push the blue button, they can push it.  And the other thing I have noticed is that about half the blue buttons do not work so what is the point?  Bits and pieces.

Let's look at these people at risk and make sure they don't become the highest risk people in healthcare.  This is the sick group and then there is the sickest of the sick.  Seriously?  Just because someone is higher-cost and higher-utilization does not mean they are sick or sickest of the sick.  Define sick.  Sick is not having a chronic condition.  But people call it that.  I swear I thought people knew this until I left the company where I had worked for 15 years and then learned the term "sickest of the sick."  Bits and pieces.

Let's have a sole carrier healthcare system in Colorado!  No, let's not.  Seriously let's think about it.  Let's not make a sole carrier healthcare system.  Bits and pieces.

There are so many bits and pieces and these are just a few.  But while my blog hasn't been very active recently, I have been.  It's been a fun ride.


Monday, July 6, 2015

... and all that jazz

What do you do with your worst fears?  How do you get through the most difficult parts of your life?  Or...  fear, pain, and all that jazz. 

A friend of mine posted these questions, well something like them, on Facebook recently and her friends weighed in.  I said I tried to distract myself when faced with fear.  For the difficult parts in life, I thought perhaps taking them one day, hour, minute or second at a time might work - breaking them up.  Others suggested leaning on God which is probably a really great thing that hadn't come to my mind right at that moment.  But those fears and difficult parts of life for my friend are different than my fears and difficult parts of life.  She has cancer and I have MS; well, we both have MS.  I bet we fear the same thing and that is for another blog or I think I will just leave it.  Difficult now is her facing chemo; difficult for me recently is facing pain in my legs from MS; very different circumstances and I tried to think how my pain is so very different and minor than what she might experience, yet the pain over the past week for me has been excruciating.  And it's invisible.  Invisible is excruciating, so often.  And how did I deal with it? 

Last week I went to bed with a slightly strange feeling in my legs.  In the middle of the night, I woke up and have what can only be described as MS leg flu.  When you have the flu, and not the stomach flu, your body aches, correct?  I haven't had the flu for a long time, but I remember my whole body aching (in addition to things like a fever which cause the achy feeling).  But last week I didn't have a fever. I just had aching legs from the waist down.  It hurt.  It hurt a lot, in the middle of the night, as I was just lying there with everyone else asleep.  The last thing I wanted to do was to get up, but I got up.  Ouch.  That hurt.  Putting pressure on my legs helps in the long run, but in the process it is also painful. 

In the morning (minus sleeping from being in pain), I was still in pain.  Fantastic.  I wanted to cry and could have, but what was the use of that?  It wouldn't help the pain go away.  Tylenol!  That brought the pain down.  Please do not respond to this and tell me to try marijuana.  That will never happen even if it becomes legal.  Just trust me and leave it alone.  No marijuana for me.  No discussion.  Just clarifying things.

So, I walked before leaving for work.  I drove to work in pain.  I walked.  I drank water.  I walked.  In the afternoon I took another Tylenol.  I walked.  It hurt.  I walked.  All I wanted was to be free from this pain.

Gradually the pain went away but it comes and goes in spurts with no rhyme or reason, which is typical of MS.  During one between spells of pain, I sat on my deck for  few minutes and cherished the feeling of legs at peace.  Freedom from pain.

And then, well my legs said walk!  No more sitting.  Back and forth and back and forth, they took turns having spasms.

And now the pain has all been gone for a few days.  There has been peace that I cannot explain.

And with the pain gone, I have gone back to the great advice I gave my friend...  that I did not follow.  I didn't break up the pain into days, hours, minutes, or seconds.  I just wanted to cry.  The thought of breaking it up didn't even occur to me as it does frequently when I am working out.  And the thought of leaning on God during this time didn't come to me either.  I instead complained on Facebook and tried to hide my pain from the world.

Looking back, I think maybe I should have had one of my "conversations" with God where I tell God where I think.  I couldn't break it up.  The problem is that I didn't know when it would end.

Today I had a realization that my legs were at peace - not hurting - not jumping.  And then in a strange way that makes no sense I said thanks to God for getting me through this, this pain that will come again.

And my friend?  I wish her the very best.  I hope she finds a way to break apart the ugly beast of chemo symptoms.  I hope she leans on God and finds peace during the difficult times ahead.  And I wish I had set a better example.

But maybe, just maybe, leaning on God afterward because the process was too painful to go there, is ok.  God will be there the next time, and each time, and knowing that is perhaps what I need.


Tuesday, June 9, 2015

A piece of bread, a moment in time

I sat there, 5 years ago, stuffing a piece of bread in my mouth.  That was all the energy I had for that moment in time, returning from work, exhausted.  I looked back at my blog entry from that day.  I wrote, "Everyone is tired. I'm REALLY tired - I hope I make it through the day. I may be calling my doctor ... because I am tired from MS attacking my body and I'm about to go on steroids."  Presumably then I started falling all over the place and on June 10, 2010, I went on steroids.

But this is not about that piece of bread or that moment in time.  About a month and a half after that, I started taking Ampyra, and I've been moving forward ever since.  No steroids.  Just continued improvement from a medication that is not supposed to stop MS.  Never say never.

A year later I wrote this blog:
Summary: I was improving. Life is good.  "It's amazing to me - a year without MS attacks. When I have an MS attack, my legs collapse - I hit the floor - I'm totally exhausted. When I go on steroids I get a rush - then I get angry - it's a roller coaster ride. But now it's been a year without this. And a year without the roller coaster ride of steroids - I am grateful. It's because I'm on Ampyra - nothing else makes sense. I used to have attacks every 5 to 6 months. Given the stress I've had at different points during the last year, I should have had several attacks."

Today (2015) my daughter remembers the steroids and one day said, "Remember when you went on the drugs that made you so mad?"  Those were not fun times.

Fast forward to 2012.  ( (The excitement, and the amazement continued.  I wrote: "Almost two years on Ampyra, the drug supposed to help with walking, not with MS attacks.  Two years of improvement with walking, sitting, standing, and much more. Two years I thought would never happen.  Two years of exploring what is next. Two years of change.  Two years of being glad I hadn't given up.  Two years with God beside me as I traveled down a different road."

The miracles continued.  By this time I had new Bioness leg devices which help me walk.  No evil steroids.

And then, 2013.  ( "All I can say is wow.  It has been 3 years since I have had to be on steroids for an MS attack.  Wow.  For 3 years I have been able to wake up each day and get up, even though each day I sit on the edge of my bed, wondering, before rising, if my leg muscles will work.  For 3 years I have continued to improve on the medication called Ampyra.  In those 3 years, my world has been turned "downside up," meaning life has become so much better, manageable, possible, less overwhelming, amazing, wonderful, and the list could go on.  It hasn't been easy - what I have never is.  It doesn't make any sense - other therapies haven't worked, have caused allergic reactions, have had side effects - and this medication comes along and works - and then neurologists say an MS diagnosis doesn't really fit me - and on and on - and I try to make sense of what does not seem to make sense to so many - including me - the impossible as possible - downside up."

The miracles continued.

2014 (last year) ( "I have come so far.  I started taking Ampyra.  Ampyra is not supposed to alter the course of MS.  But as soon as I started taking Ampyra, my MS halted completely.  2 days after I started taking it, I knew something was different.  I could stand longer.  A few months later, I started physical therapy (PT). Ampyra and PT have taken me to where I am today.  I moved from using "AFO" braces to investing in Bioness.  AFOs allow muscles to atrify.  Bioness builds muscle.  I wish more people realized this, especially physicians.   I have come so far.  Legs with big AFO braces would swing out and around for the 50 feet I could walk.  Gradually with the Bioness my legs can go straight, one in front of the other."

And so we come to today.  It has been 5 wonderful, glorious, miraculous years of God walking beside me along a path of uncertainty.  I am so grateful.  I am grateful at the progress I have made and continue to make.  I am amazed.  I have dreams of me running that I love.  I have wonderful, supportive family and friends.  And I continue to try to push forward, trusting that God will be with me no matter what road I choose to follow.

There have not been moments in time when I stuff bread in my mouth.  There have been many moments of time of amazement and happiness.

Will you be grateful?  Be grateful that you can walk; grateful that you can write.  Be grateful for all those things you can do and never, ever, take them for granted.


Tuesday, March 10, 2015

(Don't) Lean In

Lean In is the title of a book that has nothing to do with this blog.  It just came to mind and has been sticking.

In learning to walk again, I watch other people walk and see amazing thing.  First and foremost, walking looks so easy, and standing looks so easy.  Beyond that, I notice that people seem to just move their legs when walking - the upper body just sits on top.  People don't have to lift their legs much at all, and walking is smooth and flowing.  I try to learn some things from how other people walk.  When people walk uphill, they actually lean a tiny bit uphill; when people walk downhill they relax a bit.  If you can walk, think about it sometime.  I even ask my daughter to walk certain ways sometimes!  She even explains how this easy walking works for me.

I walk with a walker.  First and foremost, it's not easy; and standing starts easy but then my body likes to bend.  Beyond that, I throw my whole upper body into walking; my upper body sways or jolts from side to side when I walk.  I feel like when I walk that I am lifting my legs to the sky; if my Bioness (electronic device that helps me lift my heel) isn't working, then I feel like I am pulling my leg through mud and flinging it forward at the end.  Walking is smoother and more flowing than it used to be, but it's not smooth and flowing.  When I walk uphill, if I am not already leaning, I lean at a 90 degree angle.  I try to work on not leaning; that is the biggest part of learning to walk again - getting vertical.  When I walk downhill I am afraid my walker brakes may fail, so I lean forward even though that is not necessary at all.  I don't relax going downhill; I tense up.  I am always thinking about walking.  My daughter shows me how I used to walk, how I walk now, and then I know I am improving and I know there is so much more to learn.

I'm focused on leaning now.  The swaying of my upper body is huge, but as my physical therapist says, I can't work on everything at once.  Per previous posts, I torture myself twice a week on an "Alter G" treadmill that supports 25% of my body weight which allows me to walk straighter.

The treadmill provides support for core muscles.  At first, the physical therapist set the support level very high on my body.  Gradually, she has brought the support level down and it's now at "9" which is the lowest it will go and where it offers the best support.

When I walk on the treadmill I zone everything out and focus on walking.  I started a year ago at .5mph and am now walking for 15 minutes at 1.7mph.

But here is the thing.  As the support level dropped, what I have found is that I cannot lean forward onto the treadmill.  For some reason, it just doesn't work.  At 1.7 mph, I can't lean forward at all.  I know this because for some reason I was leaning today, was having trouble, and told myself to stand straighter.  At this level, I have to grab a bar that is next to me, and I have to walk like I see other people doing, with just my legs.  And for those of you who can walk, you have stronger stomach muscles than you know because I tense my stomach muscles when doing this.  I am going to get a "6 pack" of stomach muscles by walking at a whopping 1.7mph!  Go me!!

And the point of this post is in the title: Don't Lean In.  It's critical on the treadmill.  When I go walking and see my reflection in a window, I work on not leaning.  Leaning while walking is tiring, but the first thing that tires for me is my core area which causes me to lean.

A couple other things on the treadmill... I have learned that my left leg likes to drag behind.  On the treadmill, both legs have to go the same speed.  There is a camera I watch and I can see my legs, so I use that to train my leg to move when it reaches a certain point.  It's not at all natural.  Then my leg learns and I can go faster.  My right leg has another issue.  It doesn't like to kick forward as well.  So I think of it kicking although most of the time it can move like a robot, without me thinking.

So there it is, me on the treadmill.  I'm thinking of walking straight and grabbing the bar; I'm thinking of when my left leg needs to move forward; and I'm thinking of kicking my right leg.  Beyond that, I'm trying to remain calm as I go faster.  My therapist doesn't always come to ask if I am ok, which is good, because then I have to keep going.  At the end, I collapse and take a few moments before getting off the treadmill. Then I sit and drink cold water until my body temperature drops enough for me to walk to my car.

And there are so many moments with God during the 15 minutes, and right afterward. It's quite a torture session.  Someday soon hopefully I'll have a runner's high again. I had that back at 1.5mph.  And then on other days I might walk on a bikepath to a bench, where I sit and think of  how I didn't used to be able to walk this far.  I feel the breeze; the sun; the air; the strange presence of God; if it's not God, it's something else.  It's emotional, too, because no one ever thought something like this would happen - that my walking would get better.  And I don't take any of it for granted.  Ever.


Wednesday, February 11, 2015


Yesterday I told someone that today would be 22 years since I was diagnosed with MS.  (I didn't tell her that also means I've had MS for over 25 years, because the diagnosis took 3 years, and it was a diagnosis of "lesions consistent with a demyelinating disease; probable MS" - which is still the case today).  She asked why I remember the specific date - why do I want to remember the specific date, when it wasn't a good day, said in a critical tone which was irritating.  And she also asked, in the same tone, if I also know the specific date when I started learning to walk again.  Clearly only good memories are ok.

I thought of another friend of mine who has a spinal cord injury and she once told me, "Beth, we all have _our_ days," meaning that many people with disabilities know of the specific date when an injury caused their disability, or they were diagnosed with something.  People remember the dates when loved ones die.  Dates do not all have to be happy.

But today actually isn't a bad day.  It is a good day.  You see, I spent 3 years, between ages 17 and 20, which as a side note makes me a bit bitter because those ages should not be spent how I spent them, not knowing what was wrong, 3 years of thinking that what was happening was not real but was in my head, 3 years of not knowing whether every physician was really taking me seriously, 3 years of medical test after medical test after medical test with no answers, and 3 years of continuing to ask God what was wrong and when would I know?  Near the end, there was a letter from my neurologist to my doctor at school saying basically, "Here is the plan.  We have very few tests left.  If these come back normal I will be at a loss as to what is wrong with Beth."  There was great uncertainty.  And on this date, I had so many more tests, because the tests that began the day changed when something was found - so it was more of a double test day.  It felt like while everyone was experiencing college, I was experiencing a personal hell, and the year I was diagnosed, my roommate and I had a small, dark dorm room on the fourth floor, down the hall from some girls who liked to party.

Late on the date of test after test after test, my neurologist told me they thought I had MS but needed more bloodwork to rule out other things.  That was difficult, but when I came home for spring break, my high school orchestra teacher said it best, "Beth, isn't it good to know, finally, what is wrong?"  And yes it was.  It wasn't in my head, physicians would now take me seriously, and the tests were finished.  February 11 is a good day.  It is a day when I can move forward.  It is a day I can let go.

After this day, one of the first things I did was to go talk to the minister of the church on campus.  I had an instinct to talk to him.  And that was the right instinct.  He helped me to know that everything would be ok, that life would continue.  There is a balance.  There is MS, and there is living life without dwelling on MS, no matter how difficult it may be.  We didn't talk specifically about that. We prayed.  I suppose we handed MS to God.  And God held me.

Throughout the years, there has been the balance of living a life with MS and living a life not defined by MS.  I am an athlete.  How does one find balance when the favorite part of life seems to be slowly stolen?

While other people who were my age, 20, tended not to go to church during this time in their lives, but to sleep in on Sundays, I continued to go.  I found balance at church.  Church was a place of peace, a place where I could somehow consider the balance between MS and not being defined by MS, of finding myself as an athlete when I lost the physical component of athletics. Church was stability when so much was not stable.  Church gave me balance.

As to the other question - do I remember the day when I started learning to walk again?  Not exactly.  I remember the last day I went on steroids - June 10, 2010.  And sometime shortly after that, I started taking Ampyra, and learning to walk again.  I just looked it up.  I first took Ampyra on Saturday, July 31, 2010.  On Monday, I felt a difference.  By Tuesday I was already walking better.  Life is good.  There is balance.

Today marks 22 years of knowing, of balancing, of losing the ability to walk with each attack I had, and then one summer, of standing at my kitchen island and realizing I had been standing there a long time, and of realizing that not giving up had left the possibility of walking and perhaps running, wide open.

Thanks be to God, for all the good times, and all the bad, for walking with me through these 22 (or 25) years.