Let me tell you about my hero... I cared for Steve many years ago. I first met Steve when I was assigned to his care. Diagnosis: pneumonia.
Sounded like a routine assignment except Steve had an additional problem... he had muscular dystrophy and the disease was taking it's toll.
And in spite of this, he had the most beautiful smile in the world!
He was first diagnosed with muscular dystrophy in his 30's. Normally he was active but then found he was having some weakness of his legs.
He had trouble running to catch a ball and would frequently fall down. That was when he learned of his diagnosis.
He was married and had no children. As the disease progressed and his legs became weaker he was resigned to spend his days in a wheelchair
and had a van specially equipped so he could get back and forth to work. Every day he would go to work.
He needed his health insurance. This is a progressive disease. There is no cure.
His wife asked for a divorce.
As Steve told me... "She had no idea when she married me that this would be our future. She was having difficulty handling it.
I can't fault her for that. She has her own life to live. We divorced. I wish her well and hope she can find happiness in her life."
It certainly appeared he held no animosity for her decision.
Steve was fortunate in that he lived next door to his mother. She was his lifeline.
Each morning she would go to his house to get him up, bathed, dressed and to help him with breakfast and then he would head out to work.
His mother was in her 70's at the time. She would mow the lawn, shop for groceries, and get him to bed each night.
And then he was admitted to the hospital for pneumonia.
His muscles had weakened to the point that his inability to breathe deeply and clear his secretions became life threatening.
The doctors made a decision that he needed to go on a ventilator and they were unsure if his lungs would improve to the point that he would be able to get off the ventilator
and he might end up needing a tracheostomy (a tube in his neck to attach to the ventilator on a long term basis).
The plan was to go ahead and do this without including him in the decision making.
I felt strongly that this young man understood all too well his condition and felt that he needed to decide how to proceed.
After a long discussion with his mother, Steve made the decision to intubate and go on the ventilator. He was still in control.
This was done and he did end up requiring a tracheostomy. He eventually went home with his trach and both he and his mother were taught how to suction through that tube.
And yes... he returned to work!
Years later, as I was perusing the obituaries, I saw that his mother had died.
And the first thing I thought about... what has happened to Steve? She had truly been his lifeline.
I wrote him a letter. My letter began like this...
"Dear Steve, I don't know if you will remember me, but I cared for you many years ago in the hospital."
I expressed my sympathy and inquired as to how he was doing. I did not know if the letter would even reach him.
A couple weeks later I received a letter. His letter started like this...
"Of course I remember you. You gave me the choice to live."
Needless to say he was devastated when his mom died. She was in her late 80's and had cared for him all those years.
His sister had taken over his care, and now he worried about what would happen when she would be unable to do this anymore.
He dreaded the thoughts of going to a nursing home.
As I read his letter I remembered his beautiful smile and his positive "can do" attitude in the midst of adversity. He was always appreciative of his care.
When I asked him how he could always be so upbeat in spite of his situation, he told me he did not like the way it feels to be depressed and there was no one to blame for his situation.
He could not change the cards he was dealt.
He truly lived one day at a time and expressed thanks for the good things in his life and would tell me there were others worse off than him.
And so... I choose Steve and his mother as my heroes.
To me, a hero is someone who faces each day with a positive attitude in spite of adversity.
We can all learn a lot from how he has lived his life...