My Facebook Thoughts

Wednesday, September 07, 2016

What's In Your Bucket?

People are amazing creatures.  If you watch them long enough you might scratch your head until you're bald.

In the disabled community there has been an ongoing debate regarding society's propensity to kill off us gimpy ones.  There have been many stories in the news involving the disabled and death.  The reactions to these stories are different when it involves a disabled individual.

When the world learned that Robin Williams had committed suicide we were shocked.  Stunned that this man of high tense hilarity had killed himself left many to wonder why.  Many assumed it was his life long struggles with depression that drove him to hang himself.  Then when we learned it was more likely he could not handle the dementia diagnosis he had recently received.  Society was more like, oh yeah I can understand that.  Williams couldn't handle being disabled, society approved.

There was a mother in 2014 who killed her THREE disabled children because it was very difficult to care for them.  One would think a murderer who confesses would spend the rest of their life in prison or a mental institution.  Society seemed to agree with her and she was home with her last non-disabled child in a year's time.

There was a woman with ALS that hosted a two day party then was euthanized at the end.  She lived in a state where that is legal.  The media loved this story.  

The most recent story is one that really made me scratch my future bald spot.  A 14 year old girl from Wisconsin decide she was tired of being disabled and in pain.  She wants to choose hospice and no longer use her ventilator.  Because she was only 14 she did want to experience Prom.  So word got out, money and services were donated and about a 1000 people helped this girl at her "Last Dance".  The girl in this story and I have the same disease, Spinal Muscular Atrophy.  While SMA is no picnic, its also no gloom and doom existence either.  But, the media ate up this story and people were Ok with a 14 year old, basically, committing suicide.  A fund was setup that raised over $30,000.


I compare myself to this girl because we have the same disease.  I, however, want to live.  Am I in pain?  Hell yeah.  While writing this blog I have to stop every 5 minutes just to shift my butt to avoid getting a sore.  My neck is bent at an awful angle which is painful every night at bedtime.  Because I can't eat very well I've lost 100 pounds in the last three years.  I'm so skinny my bones are making sores from the inside.

Despite my listed woes, (trust me there are more), I WANT TO LIVE!  
  • I want to see my son become whatever he chooses.  
  • I'd like to see the White Sox, Bears, and Blackhawks win another championship.
  • I want to have drinks with Tom Hanks, Barack Obama, Jerry Seinfeld, and Jim Gaffigan.
  • I want to go on vacation with my mother, who raised three disabled children and didn't kill us.
  • I want a roll in shower.
  • I want to see my Facebook friends & family face to face.

I want to see if society will agree.  

Society needs to know, being disabled is not the end of the world.  Sometimes, being disabled, is the beginning of a whole new world.

Will society share my story and donate to living?  Let's find out.

If you support living, share this story and/or click life here,