Sunday, May 5, 2013

Experiencing the MS Walk (2013)

Yesterday was the 2013 MS Walk, and many people have asked me how it went.

It was the perfect day, or close to it, for people who have MS to have the walk.  It wasn't too hot; it was sunny (but there were enough shady spots and enough cooler air to make the sun ok). 

When my mom and I arrived (my daughter had a soccer game), I heard some people saying, hmm, I wonder what is happening - is it Cinco de Mayo?  That was a little humerous given that, although there were plenty of people without things like wheelchairs, there were a lot more electric wheelchairs, wheelchairs, walkers, walking sticks, etc, than you would expect at an event.

Our team was smaller this year, mainly because people with kids who usually walk had things happening, like my daughter's soccer game ("Mom, since I can't go, can you make sure to get me some free stuff?").  We found each other really easily - normally it's hard to find everyone - and we had a tent where we then hung out before and after the walk.

It actually was ok to have a smaller team for a year. I do like having a big team, but I hadn't seen the other people who came in awhile, so that was nice.  Last year my friend broke her leg in the days before the race, so this year she returned and I got to see her, her parents, and her husband (who can't always make it).  And I got to see my other friends too - those I hadn't seen since leaving my old job.  And then of course it was great to have my parents there.  Community can be big, small, or in between, and this small community was really nice and relaxed.

I started the walk a bit early so I could walk without being in the middle of a crowd, and then my dad and I waited for everyone else to reach us (where I decided to stop and wheel).  3 people then did the longer route so we all split up for a bit but then met at the tent.  I walked the end of the walk and I suppose the difference this year was that, when I crossed the finish line, I wasn't totally dead.

So that's the basic description of the walk.  It was smaller this year in terms of the number of people, and I don't know why.  In a sense that was nice because I could find people, but then again, I'm not sure if it meant a dip in fundraising. 

(Sidenote: thanks to all who have donated; if you still want to do so, here's the link to get you to the right spot for that: -------- I need less than $100 to get to $4,000 because people have also given me checks)

I did something new this year.  After the walk, I was at the Ampyra tent and then walked, on the grass, back to our tent.  I don't walk on grass -  I really don't. But the Bioness has changed that.

So many of us come together for this event every year.  It's community.  At the same time, every person's MS is different, and thus, every person, in a sense, is alone with their MS.

Right now I feel like my MS is this totally strange thing, and it's different; in fact, neurologists scratch their heads about it. I saw another neurologist on Friday and he said, like most neurologists will say, "this is very strange that you have no lesions in your brain." Yup, but I have other markers, and I have had attacks, and this looks like MS to me.  And then, Ampyra is just not supposed to work like that.  "It's a symptom-management drug, and you should also be on a disease-modifying drug."  But the thing is, I have trouble with those drugs.  Several made me depressed and gave me skin sores.  One almost killed me.  After that, who would want to try another?  I haven't had an attack in almost 3  years, so somehow Ampyra has modified the course of my MS.  But if it isn't MS, then it has modified the course of whatever I have, and the other stuff isn't worth depression, skin problems, and almost dying.  I'll never forget the last time I took the drug that almost killed me - my chest got tight; I knew this could be a side effect, but the 3 hours of shaking afterward - I'll never forget that.

Back to the walk - community - but still, everyone is alone with their own MS, or whatever it is.  For me, I lean on God then - I have yelled at God, cried to God, told God I'm not giving up and could God please get me through (fill in the blank)?, wondered why my MS seems so different, asked God what therapy I should take (God didn't answer that one - really God, could you work on giving me some answers?), gone on walks and felt I was leaning on God, sat on my deck and thanked God, took breaks during my walks and listened for God, sat on my deck thanking God and feeling tears on my cheeks.  It's not that I feel a great presence of God at all these times at all, and perhaps that's a big part of believing - handing things to God, thanking God, etc.

It all goes together...  the walk...  community...  alone...  God (for me)...

Thanks be to God.


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