In the blink of an eye

I knew very little about the disabled, other than I had my share of sorrow for them when I would witness them passing my life in some manner; and of course I envied their parking spots.  That all changed one day 22 years ago, when my youngest brother; 19 at the time; a tall handsome young man who was deciding whether to continue his education or begin life in the workplace, decided to go to a party. That decision and all other decisions for his life quickly and irrevocably disintegrated on this one fateful night. He fell off of a major Toronto cliff, while drinking beer in the backyard of this event.

The news was stark. Within one hour of arriving at the hospital, the Dr.’s quickly ushered me into a room and told me that my brother would never walk again. Moreover, he would not have the use of his arms or hands. He was now a C-5 quadriplegic. The words “no hope” must have come out of their mouths a dozen times within ten minutes. They told me in this same meeting that he would not live more than five years.

I sat in the chair in the Dr.’s office with a blank stare. I was in total disbelief. I was in shock. Then they ushered me into the emergency room, where I got my first look at my younger brother.  His arm was literally dangling, attached it seemed by a thread. His face was swollen beyond recognition.  Both of his legs had compound fractures. His body was bloody and it seemed impossible that he was alive, yet, he recognized me. I broke down and was taken out of the room by three nurses.

This is how I became acutely aware of what it was like to live in a disabled world. My brother Phillip had a “halo vest” on his head. I had never seen anything like this before. Pins screwed into his scull to keep his head straight so that he would not do further damage to his body. How much further damage could he have done I wondered? His face and throat swelled to the point where he could not speak a word. By the time I had assembled my family to give them the information; which was no easy task as none of them were in Toronto at the time, Phillip had undergone three major surgeries. Each one was given a 70/30 percent chance of him surviving. Extraordinarily tough times, but not even close to the ones that were to come.

After his third operation, he was in intensive care and we were allowed to go in and see him in pairs. It was clear that he wanted to communicate with us, and it was exceedingly frustrating to try and figure out what it was that he wanted. We made up alphabet charts and tried to point to letters and use the blink once if it is right and twice if it is no.  Six hours later, we discovered he wanted a t.v.  A t.v. for heaven’s sake.  Here we all were in the waiting room, sick in our hearts, lamenting on what must be going through his mind – and he was wanting a television. Of course, later he would realize the devastation of his condition, but for now his wanting a t.v. gave us all a well needed break from our horrific grief.

The aforementioned occurred within 2 days of his accident. What came afterwards was 25 years worth of living filled with so many eye opening moments about the handicapped, the hospital system, human nature, will, sadness, loneliness, helplessness, fortitude, tears, joy, agony, stress and so much more. Not just with my brother, but with the hundreds of people I came to know throughout the journey of my brother’s new life. He died three years ago.
I have hundreds of stories to tell about my experiences with both my brother and these other people I met with a wide variety of disabilities. My brother used to say, “I’m able, not disabled”. Those words always stuck with me, coming from someone who essentially needed every single thing done for him by someone.

During his life I found myself resenting his choices terribly. I loved him and I hated him. I know; a terrible thing to say about someone so completely helpless. I’d like to explain myself in further stories about living with a family member that is quadriplegic.
His first words to me, when he could talk, and understood the severity of his condition were – “I will never have any fun again”. My answer was, “Phillip, you shall. It will just be different”.