An Ex-Senator Summons Strength Against a New Foe
updated 04/04/1983 AT 01:00 AM EST
•originally published 04/04/1983 AT 01:00 AM EST
Javits now must use a wheelchair and a portable respirator, but his intellect has not been affected. He still consults with many of his former colleagues on major issues, working mostly out of his spacious Manhattan duplex. It was there that he talked with PEOPLE'S David Grogan about his condition and what private life is like for a very public man.
I felt the first symptoms in 1979, toward the end of the summer. I began to get very stiff after playing tennis, so stiff that I found it difficult to walk up the steps at my tennis club. In addition, the small finger of my right hand became lame. My doctor thought it was a problem with my ulnar nerve and that an operation might be necessary.
It was the time of the Senate hearings on the SALT II treaty, so I deferred going to the hospital until after Labor Day. A long series of tests showed that there was a dysfunction involving my whole nervous system. By that time we were in the middle of October and I had to begin to think about whether I would run for reelection in 1980. In December, while the Congress was in adjournment, I undertook a series of visits to top experts in the field. The chief neurologist at Massachusetts General Hospital told me he thought I had amyotrophic lateral sclerosis. He told me the disease was a neurological ailment and that its effect would be to lessen my muscle strength primarily in my arms and legs, very slowly if I was lucky, but inexorably. He said I had to be prepared ultimately to find myself in a wheelchair. But he said that it would have absolutely no effect on my intellectual capacity.
My reaction was that the disease shouldn't stop me in any way unless my doctors advised me otherwise. I ought to continue to live my life, to do all the things I would have done without the disease. I had no fear whatever. I still don't. I realized that eventually I would not be able to walk, but my brain was in first-class shape.
After the doctors reassured me, I decided to run. But it took until February 1980 for me to make the decision. I agonized a great deal because there was such a temptation to say, okay, I'll lay it all aside and lead whatever life I wish to lead—have music and literature and family and travel as long as I can—but my instincts drove me to go ahead and run again. In the primary, I was defeated by a very conservative Republican who made my health the main issue. It was pretty low-level politics, very vicious. The campaign was very exhausting for me. But having been a public servant so long, I still felt that I couldn't retire from the race. In the general election, I ran on the Liberal Party line and took all that beating once again.
After my defeat I didn't spend a lot of time feeling resentful about being rejected by the people I served so indefatigably for so long. My thoughts were to go on to do what my dedication and intellectual capacities and my physical health would permit me to do. I spent a year as a special consultant to Secretary of State Haig, who wanted me to advise him on various issues because of my foreign policy experience. The disease at that time confined me to walking with a stick and working only a few days a week. I spent most of my time in Washington and kept in close touch with my colleagues on the Hill. I also continued to write and taught a graduate class in domestic and international affairs at Columbia University. It was not until the very late fall of 1981 that I had to resort to a walker and a wheelchair. A cane was not enough. I just couldn't balance. I had to have two hands on something.
I thought I should take the winter off and in January 1982, with my youngest daughter, Carla, I took an apartment in West Palm Beach. In March I was stricken with pneumonia. It happened very suddenly. I pretty much conked out and was unaware of what was going on around me for two days. They had to give me a tracheostomy so I could get enough air to live. Now I have a machine, called a ventilator, that takes in room air and feeds it into my lungs through the opening in my throat. It changed the whole nature of my life. I can stay off it for an hour at a time, but other than that I need it and it travels with me wherever I go. In addition, my locomotion has decreased further and I have to use a wheelchair almost continuously now.
When I was originally operated on in West Palm Beach, they inserted a tube with an inflatable cuff which regulated the flow of air through the hole in my throat, and which also temporarily prevented me from speaking. I was deeply concerned about that, but my doctors assured me I was going through a normal healing process and I would soon be able to talk again. I was moved to the Bethesda Naval Hospital, and doctors there deflated the cuff first for an hour and then for as much as a half a day to see whether I had enough lung power left to speak. Happily, that proved to be the case. In the meantime I had lots of visitors, and I used a children's toy called Speak & Spell to communicate with them. After three months the cuff was removed entirely and I haven't had any problems in nearly a year.
I don't think I had a crisis of confidence during that time. I never felt any sense of panic or despair and I had no doubts I would regain my ability to speak. During my recovery, my wife, Marian, was a tremendous help. She suggested that I undertake a major project right away, so I spent the summer of 1982 at the State University of New York at Stony Brook organizing a library of my papers.
My illness has had a unifying impact on my family. I can give them more time, help and advice now than I could when I was in Washington. While this is not a contagious illness, I did go through a period when not many of my friends knew enough about what was happening to me and many of them felt that they would be intruding. It took a while for them to realize that I was very much around and in touch with what was going on.
I still have a very busy calendar—speaking engagements and honors, and a constant stream of visitors, including many of my former colleagues in the U.S. Senate. In addition, I'm counsel to a law firm I founded in 1957. There is frustration in terms of movement. Your physical condition may interrupt momentarily what you wish to do. At times I get angry. I sign five checks and my arm is exhausted and I throw the pen down and it's a bloody bore. But that doesn't stop me. If you want to travel, you find a way to go on airlines. If you want to go to a movie, you find a theater where you can go in off the street without climbing stairs and where there's an electrical outlet handy to plug in the respirator. I do it all the time.
I go to Bellevue Hospital for physical therapy twice a week because exercise is indispensable. At home I do 40 minutes of exercises in the morning before I launch into the day's activities. I have a stationary bicycle that can be attached to my wheelchair, and using it helps improve the circulation in my legs. I can also walk with a walker for short distances. Even though I have to be helped with activities like bathing and dressing, and I have nurses around the clock to see that the breathing machine keeps working, I feel like an effective, functioning human being. Sometimes it's an effort but an effort I can absorb for the greater good, the opportunity to work.
I've learned that I'm very strong intellectually and very able to take pain and discomfort. And also that there is enormous pleasure in being really close to my family and friends. I love to dance, but I've learned to live without it. I love to go to the theater and to parties. In the main, I have to do without those things too, but I have no sense of being deprived.
My advice to others with this illness is to reconcile yourself to your condition. Give it a fair portion of your time and energy but devote yourself to what you love to do. Don't be obsessed with the fact that you're sick. It's the will of Providence. I was a very hard worker. I still am. I have no regrets.