Just when I thought...

...that I had come to terms with my increasing limitations from having spinal muscular atrophy, I come across a video on YouTube which instantly put me into some sort of frenzy I don't know how else to describe it I became extremely emotional, started crying, and practically hyperventilated.  I thought I had accepted that I could no longer lift my arms, that I could no longer feed myself, that my arms were basically useless to me to do anything that would make me feel the least bit independent from others.

There were so many thoughts going through my head all at the same time...

• I want that.
• Insurance will never pay for that.
• The company is in the UK so I bet I can't get it.
• Please God let me be able to get it and feed myself again.
• Why is this so important to me?
• Why am I getting so emotional?
• Calm down.
• Breathe...relax.
• You're just being stupid.
• No one else will ever understand how much I want the use of my arms back.
• Etc.

Even now as I am writing this, I am fighting back the tears.  This one little thing...the ability to use my arms...is that important to me.  I used to think that people who became disabled after some freak accident or some rapid onset disease had it harder than I did in accepting their new limitations since so much was suddenly taken from them that they used to be able to do.  I'm not so sure that I believe that anymore.

Spinal muscular atrophy is a progessive disease.  The rate at which you lose the ability to do things like walk, stand, lift you arms, etc. depends on the severity of the disease.  I went through several stages in life from being able to walk with braces, being able to only stand with braces, to being in an electric wheelchair all the time.  I don't remember having a particularly hard time giving up the walking/standing.  To tell the truth, I think I was relieved as it just seemed like too much bother.  I didn't need to walk.  I had my arms and pretty much did whatever I chose to do in life.  The changes from that point were slow and subtle until one day after working for 23 years, I realized that I just didn't have the strength to continue doing so.

Since that fateful day over 3 years ago, my abilities have deceased even more.  It took me a year to realize that I needed more help than the anti-depressent medication I was already on could provide so I went into counseling for about a year or so.  Did it help?  Well I thought so until I found myself in an emotional frenzy today.  I guess the thought that I might be able to use my arms again is that important to me.  I wrote an email to the company to see if they have distributors in the US.  We'll see what happens