The Americans with Disabilities Act put the spotlight on a group of people in the USA. This group now has a voice; a constituency that has come of age. This community votes, works and pays taxes.This blog is based on a N.Y. newspaper column I wrote for the Rockland County Journal-News from 1990-92.
The surgery eventually would let me hold my head up without a neck brace. The operations stabilized my condition, but I remained paralyzed. I was flown home, and spent the next seven months in the New YorkUniversityMedicalCenter's Rusk Institute of Rehabilitation. There I learned just how much my spinal cord injury would really change my life.
I was paralyzed from my chest to my feet. I had limited use of my arms and wrists, but I could not use my fingers. I had lost sensation below my chest and I had no control over my bowel or bladder functions. I could not walk. I couldn't even roll over in bed.
In rehabilitation, physical and occupational therapists taught me how to care for my paralyzed body. I was taught to look for red marks on my skin that could lead to skin ulcers. I learned to feed myself and how to accept care from others. I learned to use a wheelchair. And, I learned how to drive a specially-equipped van with hand controls.
Eat Like a Pig
I also learned about SCI from patients who also were paralyzed. I had my first "public" lunch with two other patients on the 4th floor wing of Rusk, about two months after being admitted. It was a big event for me. I usually ate alone in my room because eating was extremely difficult. I couldn't hold utensils with my fingers, so the nurses cut my food into bite-sized pieces for me. I then fed myself, usually dropping food all over.
Joe Mendez and Al Crespo were in the room when I got there. My nurse set up my tray and left the three of us alone. Joe was a police officer and became paralyzed from the waist down in a car accident. Al was a laborer who became quadriplegic in a car accident while vacationing in Spain with his wife. Al's injury was similar to mine.
Al already had started eating, and he was holding a tuna sandwich in a lifeless-looking paralyzed hand. He couldn't use his fingers either. "I can't complain," he said, "I'm eating and breathing."
I tried to take the plastic wrap off my sandwich but couldn't. I tried using my teeth, but I kept dropping the sandwich on my wheelchair tray. I was getting frustrated and embarrassed. "Jim, let me help you," Joe said. "I don't know how you guys do it. Being a 'quad' has got to be tough." As Joe rolled his wheelchair toward me and began to remove the plastic wrap, Al took a bite out of his sandwich. Some tuna fell to his tray. Sandwich unwrapped, I tried to pick it up but couldn't without making a mess.
"Al," I said, "what's the best way to pick up and hold a sandwich without the food falling all over the place?" Al held up his sandwich. "Jim," he said, "there's one thing I've learned: Eat it any way you can. Sometimes you have to eat like a pig" -- his eyes watered -- "the food is always going to fall out."
After a struggle, I picked up my sandwich and some of my tuna fell out. But I took a bite anyway. "Not bad, Jim," Joe said. Al grinned.
That was a beginning. Being disabled was not going to be easy or glamourous. All the things I knew as an able-bodied person would have to change. My perception of myself, my eating and sleeping, my surviving -- everything had to change. And it would probably be messy.
My greatest lesson at Rusk came when I left the hospital in August, 1981. Unlike many who leave hospitals healthy, I was leaving as a quadriplegic in a wheelchair. I didn't feel recovered, and I didn't feel good about myself. I even thought about suicide. What would my life be like as a handicapped person? Despite all the care and the help I received at the hospital, I realized I could not accept my disability. I could never be comfortable with it. However, I would have to learn to cope with it.
Part 3 will be posted on May 31, 2011 at noon EST.