Wednesday, December 26, 2012

This I believe.

I believe in hope.  Everyone, I believe, carries hope about something; otherwise life would be perfect in every way.  Hope can be very simple, or complex; something that will likely happen or a tiny light at the end of a tunnel that seems to keep extending, so the light may get dimmer.

5 years ago, some strange sense of hope, along with a lot of other stuff, pulled me through a bad case of depression from medications which conflicted with each other.  With a lot of help, I overcame it.

I hoped, and hope now, that others don't have to experience anything like that.  I hope our mental health system improves.  Even stronger, I hope that the stigma of mental illness goes away, so people are not afraid to seek help.  That hope is one of those where the tunnel seems to keep extending itself, and the light at the end appears daunting and dim.

I hoped I could physically improve from what MS had done to me.  When the light at the end of that tunnel seemed almost gone, overnight I started taking Ampyra and have been physically improving for over 2.5 years.  Today, with some help, I walked up the 13 stairs at my parents' house instead of scooting on my rear.  Although so small, it was a great moment.  I will always hope I can run again.

I had a dim hope that one day I could get a Masters degree.  It took 4.5 years, but I got it.  I hope I'll be able to utilize it more some day.  That day may be close, but it's been close previously.  So I continue to hope.

There are so many things where, in a sense, I rely on hope.

I believe that the birth of Christ created a lot of hope.  Each year, we can be reminded that in the midst of complete chaos, there is always hope.

I hope for peace, in my own life, the lives of others, and the world.  I believe Christ brought a glimpse of that into the world with his birth.  In the midst of complete chaos, a beautiful child was born in a manger, there was a pause, and there was peace.

In our lives, we can pause and find the same peace, if only for a moment or so.  Those moments of peace can generate, or re-ignite, hope.

In these 12 days of Christmas, my hope is that people, including me, can find moments to experience peace, and that the peace, among so much chaos in the world, can build hope.  For me it's hope in getting rid of stigma, for continued improvement in physical abilities, for utilizing my Masters degree more, and for so many other places where there are tunnels with light at the end, sometimes near and sometimes far.

For me, there's a little baby inspiring the peace that leads to hope.

I believe in hope.


Monday, December 10, 2012

6 steps

I went to a physical therapy (PT) appointment last week...  I go to 2 places - at this place, the PT works with me on my Bioness.  For those of you who don't know, Bioness for me are cuffs, just below each knee.  There's a heel sensor (very small) that goes under the insert in my shoe.  When I strike my heel in walking, somehow that sends a signal to these cloth pieces in the cuff, under my knee.  Then a signal is sent by electric device under the cloth pieces to muscles, and this somehow gets my foot to kick up and forward.  And to have these devices means I am physically doing better.  To use them, Bioness, you have to be able to land on your heel when stepping and I didn't used to be able to do that.  My therapist today (at a different place) said, "Oh yes, all the people with MS who are on Ampyra are coming in here now and looking into Bioness."  But that's a digression.

I had this PT appointment to check the Bioness pieces, but also to figure out how to get my left foot to go straight instead of out to the side.  The PT explained why it does that.  With my MS, I had braces (before the Bioness).  With and even before the braces, in order to walk, I would swing my legs out to the sides.  Think exaggerated penguin walk.  The PT explained that I actually learned to do this so I could walk.  It's a different explanation and I like it.  The other explanation wouldn't have any learning in it - I just did it.  Regardless, in learning to walk this way, it became habit.

Enter Bioness.  First I got it for the right leg and the the left.  I swing my legs less, a combination of Ampyra, Bioness, PT, and working on walking.  But what bugs me the most now is my left foot sticking out.  If I think about it, I can stop it.  It takes a lot of thought, and then I have to think of trying to get the right leg between the wheels of the walker, take bigger steps, and stand straighter.  Who knew walking could require so much thought! All this info comes from opinions of multiple physical therapists.  To walk the new way, left foot straight, right foot inside wheel, etc, I have to walk more slowly.  When I'm walking for speed, I ignore these things.

This is all actually a digression.  While I was there, a patient was there in a wheelchair that provided a lot of support, so a high back, arm rests, etc. Depending on the disability, wheelchairs are designed totally differently.  I don't know how this guy got to needing a wheelchair, but he did seem unsteady and very shaky.  But he had a determined look on his face.  With help, he transferred to a bench and PTs moved his wheelchair about 6 steps from him and brought him a walker.  I think this was his first attempt at walking in awhile.

I missed the walking because I was working with my PT, but I did see the end. When he sat in his wheelchair, totally exhausted, he looked shocked and satisfied at the same time.  He didn't know if he could do that but he did.  The determined look in his face prior to his walk told me he was going to do whatever he had planned, no matter what it took.  And so he made it.  He has started something based on a great deal of determination.  It reminds me of things I have tried since Ampyra.  And his determined look reminded me of how I feel sometimes. He was wiped out and at the same time, amazed and satisfied. He had made it. 6 steps. It's so small, but it's also so big and important.

Another time at the other PT office where I mostly, I was leaving as I heard a guy tell my therapist: "I have MS and I want to work on my posture."  He was there with a walker.  I didn't see him walk, but I thought Ampyra, and isn't this drug giving remarkable hope to people who have hoped for so long, and who have refused to give up, even when it was essentially suggested they make do with what they have?  My therpist says some people get stronger without knowing, and they don't work at Ampyra, but she tests them and it is working.  But the people who get further with this drug are the people who really work at it.

In times whe I feel discouraged, I can remember these people, and how I must continue to fight.  I may not be near where I want to be.  But we all must start from somewhere.  I don't think he had MS.  But for so many things, one just never knows what can happen, where science can take us in the future.  So, we keep going, we refuse to give up, and we're ready for any new science miracle.

Perhaps 6 steps for him.  For me, I don't know.  I do know I started with standing for longer. I don't know how far I will go, but I am starting to stand unassisted, and other things, done mostly when no one is there to see my miracles.

6 steps for the one guy was perhaps my inspiration, as I suppose my strange walk does the same for others.

This is the good stuff.  Life throws other curve balls at the same time.  Right before and after I have turned 40 I have had new challenges outside of me getting physically better.  Anne Lamott, a great writer, talks about putting the bad stuff in a box and handing it to God.  Maybe I'll do that.  I think God wants me focus on beating MS anyway.