Tuesday, January 29, 2013

What your heart loves best

This past weekend was the weekend of what has become a yearly visit of James Hersch to our church.  James plays a guitar and sings, mostly to his own songs.  I don't know how his voice remains so strong over so many years - but it's a great, high tenor voice that sings various stories.  These are his stories, but they are written so they can be applied to the lives of others, and every year, a few of them apply to my life, and in a way they feel like they are also my stories.  I suppose we can share them.

It's been a time of change in life - then again, it seems like life is always changing in one direction or another at all times.  I don't think I can imagine life without a bunch of change.  Right now I'm ending my time at a company where I have been for almost 15 years, and I'm going to another company.  Definite change - I'm pursuing my dream by going to an organization where I can apply analytics and policy to healthcare.  It's not advocacy for anything either, and that's also exciting.  I can look at things as they are, very objectively.

As this change is happening, I see my daughter quickly growing up, almost 10, and experiencing her own constant changes.  It hasn't been an easy time for her - I will skip details - but I make up that she questions her value, she questions whether her presence is missed when she is not there, she questions whether others even notice when she is not there.  And then there were the children who died in Connecticut, and I can't tell what she thinks of that - she doesn't want to talk about it - but it bothers her.  And so I see a bit of anger, a bit elevated.

So we have James Hersch at church, me thinking I have found my dream, and my daughter struggling a bit.  What to do with this?

Church is where my daughter feels safe.  I can sense that.  She has a favorite song that James performs every year because she loves it.  He performed it again this year, once on a Saturday night concert and again on Sunday, when she sang (very quietly) with him.  After the Saturday concert, she wanted to tell him something and waited patiently, but people went in front of her, and she came to me crying.  It's the feeling forgotten thing.  I told her we would wait, there was no hurry.  But I could tell this was another reminder, in her mind, of perhaps being forgotten.  In a miracle, James came over to her to tell her how special it was that she was there every year, and that he loved seeing her smile.  She was not forgotten - in the place where she is safe - church - still safe - and perhaps building back the sense of value she used to have, so strongly, in herself.

In my world, with changing jobs, there has strangely not been uncertainty.  I'm ready, it's time, and I'm following my heart, even if that sounds cheesy.  There is a song called "What Your Heart Loves Best," that I heard on a CD recently, sung by James.  I turned his story into my story, as the song goes, "ain't it funny, ain't it strange, how we choose our lives...   someday we're gonna change... and what matters most, is what your heart loves best."  James sang that song, and I really feel it.  Before this job, there were other potential jobs, but there was always some hesitancy in them, with me wondering if they were right, wondering if I should leave where I have been for almost 15 years.  But the hesitancy has gone with this job.  I had 5 interviews - a lot!  Each interview made my desire for this job be even stronger.  I better be right!  But I think I am right.

By Sunday we had heard many songs.  On Sunday morning my daughter sang with James and I think she may be making a turn.  By Sunday, she was getting excited about an upcoming dance performance.  After church, while the adults had our annual church meeting, she and her friend built airplanes and made them open into huge houses.  When I dropped her off at dance tonight, she was excited.  Hopefully the feelings of value she gained over the weekend will continue.  She really loves dance.

I think my husband may be the only not having huge change!  When it comes down to what is important, it's "what your heart loves best."  And James sings this to us, and reminded my daughter that she is special, that she is not forgotten.

God has found us in the midst of all of this.  Often I have questioned, God, if something is really out there for me, where is it?  God, this new hurdle with my daughter...  why?  She is a child.

Not everyone gets their prayers answered, even with God in the midst of it all.

But this time, prayers were answered, amidst all the change.


Tuesday, January 1, 2013

Heel to toe

On 60 Minutes this week, there was a story about chips implanted in a person's brain that enabled the person to move a prosthetic arm and hand by having them simply think about moving it with their mind.  I thought how similar that is to what I have experienced with Ampyra - getting function back, but having to think through movement rather than movement happening automatically.  And as we enter 2013, I have to wonder, what may be next?

It's really amazing how things have continued to change as  I have continued to take Ampyra over the past 2 and a half years.  I suppose people can get tired of reading of the changes, but it's my blog, and I hope perhaps someday I'll have time to look back at the changes that occurred over time, which now are in individual entries in this blog which contains more than  just Ampyra.  2012 was another great year on Ampyra, and the time on Ampyra strangely has helped me through other very tough parts in my life which I don't discuss here.

For Christmas 2012, we went to my parents' house. Getting around their house is never easy and the most annoying part is the 13 stairs leading to the upstairs, where all the bedrooms are.  Forever, I have scooted on my rear up these stairs, with my mom helping so my legs don't slide off the stairs.  At one point, the stairs were almost impossible, in part because they are also very narrow.

This Christmas I got to the stairs, at 10pm, and in my mind, I thought, it just seems like I should be able to climb these steps rather than sit on them.  I could visualize climbing the stairs.  Visually it seemed so easy.  I called my mom and asked her to help by lifting my left foot onto the first step (I can sometimes swing my own leg/foot onto stairs, but those stairs aren't wide enough to do that.). Once she did lifted my left foot, I held onto each of 2 banisters and thought about pushing up on my left leg.  It definitely wasn't automatic, but when I really thought about pushing, it worked. My left left pushed up and I swung my right leg to land on the same stair.  My mom continued to lift my left leg onto each step until we were halfway up the stairs, at which point there is only one banister.

I then transitioned to using the stairs as banisters.  Visually, it still seemed possible.  My legs did 95% of the work, but I needed leverage, using both arms for balance.  Again, via really thinking of pushing on that left leg, I did the same thing, and I made it to the top.  I did this new routine on 2 consecutive days, at the time of day when Ampyra really "kicks in," which is about 10pm.

Stairs - so simple - or not.  These are the same stairs I would bound up, 2 at a time, as a kid, never using the banister, and never thinking that climbing stairs involved so much.

At night I have been working on going from sitting to standing.  Since Ampyra really kicks in at about 10pm, I do this work then.  Recently I've been able to stand from our bed without using my hands to push up.  Sometimes I get stuck and then I have to think about how standing occurs.  I actually have had my daughter stand for me so I can watch how people stand!  She finds this funny.

I noticed, when stuck, that I wasn't moving forward in standing - in standing, you actually do move your body forward a bitI move forward a lot, and if I don't, I get stuck.  But one night (and the night before that), I had a new revelation!  When a person stands, it's not just the quad (upper leg) muscles that are used.  When I move forward in standing, if I move from my heels to pushing on my toes,  lower leg muscles are somehow triggered and that helps me to stand.  When the upper leg muscles start to tire, I can use those lower leg muscles, as my toes dig into the ground, or I can use all the muscles at once if I really think about it.  It's another thought process, but it has to occur fast...  when "stuck," right in the first second, I have to think to push on my toes.  Then I feel all the muscles work (as opposed to someone who normally stands) - I feel outside quad muscles, calf muscles, toes digging to the ground.  And then I hold that standing position.  It's awkward...  but I can sometimes hold it long enough to relax a bit and stand straighter, without everything tensed in a state where I am much like a stick, or the Jenga block at the end of a Jenga game, where any slight movement can make the block topple.

Such easy things - going up stairs, standing up...  they are automatic for so many people.  For me, they require a lot of thought - sometimes quick thought.  Isn't it amazing - all those muscles, big and small, that work together for such simple things?

And then there is so much else - not needing as much sleep is another thing.  You see, when I discovered things about standing, it was after 10pm.  Everyone was asleep and I was ready to yell the great news. In the morning, it wasn't quite the same feeling of wanting to proclaim standing.  "Look at me!  I can stand!  Did you know?!  There are all these muscles involved!  Just watch!" Then again, I'm awake before everyone.  I don't need as much sleep.  Everything is very different.

There are dreams, as there have always been dreams.  In my dreams, I look at the stairs and simply walk up them, effortlessly.  In my dreams, I wonder why I have a walker, so I leave it behind and walk smoothly and effortlesly.  In my dreams, everything is so easy, automatic, and effortless.

I suppose being able to do these things was a pretty good way to close out 2012.  Hopefully, 2013 will bring more great surprises.  No need for new year's resolutions.  What will happen will happen, and I will give it everything I have.  No limits.  And for anyone who doubts, never say never.