Hope is a liar, a cheat and a tease

The above video is a Ben Folds song, Picture Window, lyrics written by poet Nick Hornby.  I told my neurologist how moved I was by Ben Folds when I first saw him perform back last October.  My neurologist and I then had a long discussion about how powerful music is. Since the concert, my husband has been buying me Ben Folds (and Five) CDs and sheet music.  I have really grown to appreciate the music of this talented artist.

One particular CD my husband bought me was released during Folds' solo career.  It is called Lonely Avenue.  Ben put music to a number of poems written by Nick Hornby.  Picture Window is a song that touches me deeply, though probably not in the way that Nick Hornby meant for it to do so.

The following lyrics strike me so deeply:

You know what hope is 
Hope is a bastard
Hope is a liar
a cheat and a tease
Hope comes near you, kick its backside 
Got no place in days like these...

When I finished college and landed a decent job with excellent health benefits, I had so much hope. In my twisted body withering away from the constant movement, I still had one thing: hope.  At 24 years old I was still very much dependent on my parents, but I kept moving forward in life.  Despite tremendous amounts of sedative medications, I was a pretty good competitive 5k runner.  I would place in my age group and win a handful of races here and there, despite my physical disability.  I just loved running.

I didn't think much about my trophies and medals.  Nor did I pay much attention to my "slightly better than average" 5k race times.  I found out from a sports writer with the Buffalo News that my accomplishments as a disabled runner were worthy of a full page article that ended up looking like something out of Sports Illustrated.  I was 25 when it was published.  During that time, I had also been approved for deep brain stimulation.

It was because I was in such great physical condition that I was an excellent candidate for this invasive surgery.  While my worries and pain melted whenever I started out on a run, I could not for the life or me sit upright in a chair or sit and eat a meal normally.  I was a mangled, twisted, train wreck of a person.  Still, I had hope.  I was going to have DBS.

In December 2008, I underwent surgery for Deep Brain Stimulation at Strong Memorial Hospital in Rochester, NY.  Within two days of my having the surgery, even before my batteries were turned on, the spasm, the tugging, pulling and twisting were just completely gone.  I didn't even need my medications.  The doctors were amazed.  My neurologist back home in Buffalo would laugh in amazement and joy as I walked upright and passed basic neurological tests with flying colors.  By the end of March 2009, I was on the roads again, running and racing in a body that was no longer held captive by its own muscles.

I'd trek to Rochester to fine tune my programming, but I was generally well.  Slowly, and unfortunately, this amazing response to stimulation began to lose its efficacy.  First in my left foot, then in my right foot, then in my neck.  Four and a half years later, here I am again, trapped inside my body and heavily medicated.  I can't keep up with the housework, my job, and simple daily tasks I could perform just a couple of years ago.  The only explanation given was simply that "sometimes this happens"  and "I'm so sorry."  I sometimes cry because of the loss of hope.  All of this coupled with the struggles of everyday life are at times too much to take.

Now?  What am I clinging onto?  Where is there hope for me?  I know I'm not alone.  I always strongly encourage people who are considering DBS to really understand that it might not work at all, it may take a long time to work, or like my case, it may work briefly and lose its effectiveness.  Only in best case scenarios will it work great for life.

It's actually been a very shitty past couple of years.  Putting up a strong front seems to grow harder every day.  I really do try.  I am going through the motions of life, but barely.  I am at the mercy of my muscles, Botox, and my medications.  I am grateful for what I have, but I want to live before I die... if that makes sense.  Right now I'm just stuck.  I'm losing hope.

Hope is a bastard.