Tuesday, May 31, 2011

It Turned Out All Right: Part III

This article was written for the Mount Sinai School of Medicine spinal cord injury newsletter. A PDF of the full article will appear on the website in the next few weeks.     

Part III: Starting Over
When I returned to work at IBM in May 1982 -- 17 months after my surfing accident -- I really didn't know whether I could be a productive employee again. I don't believe my new management team knew either. But my former IBM manager, John Perissi, had encouraged me to come back to work -- and my new management team was willing to give me a chance.

My greatest concerns had to do not with whether I could do the job, but with whether I would fall out of my wheelchair or suffer some other embarrassment in my office. I'm still concerned about that. But I now can handle the fear psychologically because my confidence has improved.

Confidence. It was the key to my comeback. As my confidence in myself grew, my performance at work -- and my capacity for work -- improved. I made new friends. I stopped being embarrassed at being in a wheelchair and began to sit up straight. When I talked to people, I started looking them in the eye again.

IBM managers monitored my progress and gradually increased my workload to the point where I became as productive as the able-bodied employees in my department. I've had full job responsibilities since 1982, and held more than 25 jobs during my 35-year career at IBM -- with more responsibility added in each successive job. I am now an executive at corporate headquarters in Armonk, New York.

Getting Personal
 My former wife and I separated in 1986 and divorced in 1987. I then lived as a bachelor, hiring nurses to get me up and put me to bed each night. And I continued to work full time. During this time I achieved more independence than I thought possible. I drove everywhere by myself, including to job-related assignments, to family functions, and even dates.

I made new friends and socialized more than I had done immediately after my accident. But I never expected another romantic relationship, and never sought to develop one. I needed a wheelchair to make my way in life. I believed I had nothing to offer a woman. My focus was physical -- on my disability and on my wheelchair. Those two facts, I believed, determined who I was. My attitude could have been summed up in one sentence: Who would want a relationship with a quad?
I was wrong. At work, over two years, I became friends with Maggie. Our friendship turned into love, and I proposed to her in April of 1988. Many people advised us not to marry, for basically the same reason I was afraid to get involved in a relationship: Why would an able-bodied woman want a life-time commitment with a quad?

Well, we loved each other. We discussed and argued to exhaustion the pros and cons of our relationship and possible future. We discussed my role as a husband. Could I provide for us, or would Maggie have to work? Would nurses still be required to care for my personal needs, or would Maggie assume part or all of my care? Could I protect the family? Would I be a good step-father to Maggie's 4-year-old daughter, Danielle? What would be the quality of our sex life? Could we have our own children, or would we have to adopt? What would living with a quad be like?

We questioned everything. Although this would be the second marriage for both of us, I was particularly cautious: My first marriage had failed partially because of my disability. We were aware of the issues, and felt that our marriage would be difficult in some areas and easier in others. Our greatest letdown came when my doctor told us that there was very little chance of our having children. Men with spinal-cord injuries have only a five percent chance of fathering children naturally. Consequently, my doctor advised us not to marry if we wanted children.

Nonetheless, we were married on Nov. 26, 1988. Ten months later – in Sept.1989 -- Maggie gave birth to our son, James Richard. He weighed 7 pounds, 13 ounces and was 21 inches long. When we are asked how we did it, I tell 'em: "The old fashioned way."
Fast-forward to today, I still work full-time and Maggie did wonders with our children. Both are now in Boston: our daughter and her husband, both attorneys, and our son, is finishing up college at Northeastern University. I still have nurses caring for my personal needs, and Maggie helps out whenever I need it. And we're working on our marriage -- just like any other couple.

 I know people may want to commend me for all I've done. But I couldn't do it alone. I have a great support system -- my wife, daughter and son, relatives, friends, colleagues at IBM -- people who haven't given up on me because of my disability. These very same people have also made it difficult for me to fail or give up. They are the ones who should be commended -- the people who have cared. I love them all.

I no longer believe I will walk again. I do believe, however, that science and technology will find a way to reverse the effects of spinal cord injury so that I, and more than 1.2 million people like me in the US, will walk again. Who knows, maybe organizations and businesses like IBM’s great research organization and others along with Mt. Sinai will help find a cure some day. I don’t know, but I am sure a cure can be found.

Some people think I'm overambitious, that my quest for a cure is the hopeless dream of a cripple. But a cure is possible. Frankly, I believe there's nothing wrong with keeping your feet on the ground while reaching for the sky.


Monday, May 30, 2011

It Turned Out All Rright --Part II

This article was written for the Mount Sinai School of Medicine spinal cord injury newsletter. A PDF of the full article will appear on the website in the next few weeks. 

Part II: Road to Recovery    

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 York University Medical Center'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.


Sunday, May 29, 2011

It Turned Out All Right

This article was written for the Mount Sinai School of Medicine spinal cord injury newsletter. A PDF of the full article will appear on the website in the next few weeks.     

"Jim!" I could hear my sister yelling at me. "Jim," she was saying, "are you fooling around?"  "No!" I said to her inside my head, unable to speak because I was underwater -- and unable to lift myself out. "Lift my head up, for God's sake!" I felt her hands on me. As she lifted my head out of the water, I gasped for air. Don't let me go," I told her. "I think I broke my back. Call for some help, and be careful when you move me."

We were just off the shore of Condado Beach in San Juan, Puerto Rico. It was Dec. 31, 1980 -- New Year's Eve. I had gone to Puerto Rico with the City College of New York swimming team during winter recess. I was 25 years old, and was an assistant to head swimming coach Marcelino Rodriguez, a fellow Rockland County, Clarkstown resident.  It was supposed to be my first vacation with my fiancee, Anna. Our wedding day was only a week off. We planned to be married right there. My sisters Lisa and Debbie were along, their first trip to Puerto Rico.

Now I was lying there in the surf, gasping. I couldn't believe this was happening to me. After all, I had been a lifeguard at Riis Beach in New York City I had saved the lives of others. A few moments before, I had been body-surfing. Suddenly a big wave jolted me, throwing me to the sand on the ocean bottom. Then I felt a sharp pain at the top of my shoulder, and I couldn't move any part of my body. I couldn't even raise myself out of the water to get a breath of beautiful air.

I couldn't move. That's when I knew I was going to die. My mom once said that when you're going to die, your whole life passes right before your eyes. I waited, but I didn't see anything and didn't feel any pain. I was about to faint.

"I guess this is it," I thought, "Mom was wrong." I started to see little gray circles in my mind -- the kind that appear after someone takes your picture and the bulb flashes in your eyes. My mind wandered: I knew Lisa and Debbie would be all right. I did my best as a brother. But I didn't know how Anna would handle this. Damn, I let her down!

I was getting fainter. This is it, I thought. Dying is not that scary or painful, after all, once you settle down.  I waited on the beach for an hour before an ambulance came. The medical crew put me on a wooden stretcher and loaded me in. I called to my sister, “Debbie, thanks for saving my life.” She fell to her knees and began to cry.

At the University of Puerto Rico’s Medical Center in San Juan, I was told I had broken my neck. Although I didn’t understand the significance of that, I knew I was paralyzed from my neck to my feet. I hoped it was temporary. As we waited for the nurses to move me from X-ray into the intensive care unit, my left arm slipped off the stretcher and dangled along the side. As Marcelino put my arm back on the stretcher, a young doctor walked over to talk to me. “Jim, the X-rays show severe damage at the cervical, C5-C6 level of your spinal cord. In effect, you’ve broken your neck and will probably never walk again.”

I looked at him, not really believing what I had heard. “OK,” I said. “OK. I think I can handle not walking. But will I get the use of my hands or my fingers back?” The doctor looked away from me and stared at the floor. He then looked up at me and almost in a whisper, said, “Probably not. You’re quadriplegic and the indications are that your legs, hands and most of your upper body will be paralyzed.” I blinked hard, trying to hold back tears. As the nurses began to move me into intensive care, I looked at Marcelino and we both started to cry.

Before I underwent surgery on my spinal cord, Anna and I decided to marry. We did, in the San Juan hospital on January 5, 1981, despite suggestions by our families, friends and hospital staff to wait until I recovered. The ceremony was in my hospital room. Friends arranged to have flowers sent, and my IBM manager, John Perissi, agreed to be my best man. As nurses, family members and friends gathered around my bed, in a small room in the hospital’s intensive care unit, a civil judge married us quietly.

 I underwent spinal surgery twice, on Jan. 3 and Jan. 15, to repair the fifth cervical vertebrae. The vertebrae had been destroyed when my head crashed against the sand on the ocean floor. The resulting bone fragments tore into my spinal cord canal to cause most of the damage. In the two operations, the surgeons removed the bone fragments from the cord and performed a bone graft in the space left by the destroyed vertebrae.
Part 2 will be posted on May 30, 2011 at noon EST.