to Members of the
National Federation of the Blind
And Other Friends and Colleagues
by Kenneth Jernigan
It has been a long time (maybe 15 years) since I have written an open letter to members of the Federation and other friends, but I think the present circumstances justify it. As many of you know, I have been diagnosed as having incurable lung cancer. The doctors tell me that the remaining time will probably be comparatively short. In this letter I want to give you some details about the situation and make a few general observations.
The first indication I had of any problem was in mid-September. My left leg began to swell and be painful below the knee. The doctor thought I had a blood clot and sent me to the hospital for a Doppler examination, which is a test that uses sound waves to map the veins and determine how they are functioning.
The test indicated that I did not have a clot, so I was given medication and told that everything would probably be all right, but the soreness did not diminish. In fact, it got worse.
On September 24 I was having pain in my left side. The doctor sent me back to the hospital, this time for chest x-rays, which indicated a cloudiness (the doctor called it an infiltrate) in the lower lobe of the left lung. Believing that this might be some sort of infection, the doctor gave me antibiotics and told me he thought it would clear up.
In mid-October I went overseas to deal with World Blind Union and other businessfirst to London to talk with officials of the National Federation of the Blind of the United Kingdom and the Royal National Institute for the Blind, and then to Paris to meet leaders of the French Federation of the Blind to deal with matters concerning the Louis Braille Memorial and Birthplace. I was scheduled to go from Paris to Casablanca, Morocco, on October 24 to take part in the meeting of the Officers and Executive Committee of the World Blind Union. But it didn't happen that way.
In Paris on the evening of October 23 my left leg became increasingly painful and swollen, and on the 24th, instead of going to Morocco, I went to the hospital. Another Doppler test was made, and this time it was clear that I had a blood clot just below the knee in the left leg.
I stayed in the Paris hospital from October 24 until Saturday, November 1, and some of my experiences are worth talking about. First, let me tell you the way I got there. When it became obvious that I needed medical attention on October 24, Madame Yvonne Toros, the Executive Director of the French Federation of the Blind, said that she would have a doctor come to my hotel room. Unlike the way it would have been in this country, this was apparently no big deal. The doctor got there in less than half an hour. And there were more surprises in store. After examining my leg, the doctor said that she would have to determine if she could permit me to leave Paris. I told her that while I appreciated her concern and wanted her opinion, I thought I would determine for myself whether I would go or stay. "No," she replied, "It is my responsibility, not yours. I will determine. If necessary, I will call the airport and see that you are not permitted to board the plane."
This triggered certain reflexes, but I decided that my need for medical attention took precedence over my notions about self-determination and human rights. So off I went to the hospital, and it was a good thing, too.
The French have a reputation for being snooty and unfriendly to Americans, but my experience was the exact opposite. The doctors and all other personnel in the hospital, the people Mrs. Jernigan met in the surrounding neighborhood, and everybody else we encountered went out of their way to be courteous, generous, and helpful. Perhaps if we in America were to be judged by some of the taxi drivers in a few of our larger cities, our reputation for friendliness and good will might not fare too well.
At any rate, I entered the hospital and was told that I could not get out of bed for any reason for the next few days. Meanwhile, a blood thinner (Heparin) was dripped into my veins in the hope that the clot in the leg would begin either to dissipate or to stabilize. The leg was supposed to get better and stop being painful, but it didn't.
Let me say a word about life in the French hospital. I spoke no French, and mostly they spoke no English, which led to all kinds of difficulty in communicatingespecially with fine points and nuances. If Monsieur Marcel Herb, President of the French Federation of the Blind, had not gone out of his way to help me, I would have had severe problems. I was supposed to have met Monsieur Herb in Paris, but just before I arrived, he was diagnosed with a serious illness and could not come to Paris. Even so, he kept in touch with me from his sick bed and was of tremendous help.
Also, if Madame Toros had not been with me as I entered the hospital, my task would have been very nearly impossible. As an example, when I registered to enter, I was asked how I intended to pay the bill. Understandably they would not take a check, nor would they accept a credit card. I felt certain that I did not have enough cash to pay for the entire hospital stay. At this point Madame Toros told them that the French Federation would guarantee the bill, and she also gave them a personal check for several thousand francs as evidence of good intent. The French will always have my gratitude.
As to the hospital stay itself, I got a private room, and Mrs. Jernigan was allowed to stay with me. She took the other bed in the room, and they brought her meals when they brought mine. On the back of the door of the room was listed the price of wines and champagnes, which I was told would be brought if I cared to have them.
Apparently the French doctors have a different notion from ours about cholesterol. With every meal they brought me butter. They also brought fried steak, fried potatoes, rich coconut ice cream, cheese omelets, and other such. To supplement the fare, Mrs. Jernigan went out into the neighborhood to buy French bread, which was uniformly delicious, and a variety of other things, one of which was chocolates to earn good will with the nurses, doctors, and other members of the staff. Candy is always a good investment for the hospital patient. If you have occasion, try it.
At least one more incident is worth mentioning. On our fourth or fifth day in the hospital, the toilet stopped up, and a plumber was called. He worked for half a day, and ultimately we had to move across the hall to another room.
By and by a hospital employee (he was from Ireland, so he spoke English) came and said that he was making no accusations but that the plumber had found McDonald's burger wrappers in the toilet. He also noted that there was a McDonald's Coke cup on our table.
Now, it so happened that Mrs. Jernigan had, indeed, been to McDonald's, but the Coke was the only thing she had bought. However, I didn't even take the trouble to argue the point. Think about it! We were Americans. McDonald's is American. We had been in that room for four or five days with no toilet problems. Presumably no one else had used that toilet. As evidenced by the cup on our table, Mrs. Jernigan had been to McDonald's. In the circumstances, what would you have thought if you had been the plumber? Even so, the hospital officials were not unfriendly or hostile.
When I left the hospital on November 1, I took a train to London, going under the English Channel. The leg was still hurting. In fact, I had real difficulties in the London train station, causing me to determine to use a wheelchair in similar circumstances during the remainder of the trip.
I left London on Monday, November 3, and flew to New York. I came to Baltimore the same day and went to the doctor on November 4. Later in the week I had a CAT scan and also a blood test, which showed that my CEA (which is a marker for cancer) was 121 when it should have been only 3 or less. The CAT scan showed a nodule in the lingula, which is an extension of the upper lobe of the left lung. It also showed increased cloudiness in the lower lobe of the left lung.
By Sunday, November 9, the pain had spread above the knee in the left leg. I was hospitalized at St. Agnes in Baltimore on Monday, November 10, and intravenous Heparin was recommenced. Meanwhile, I took a series of tests. The colonoscopy and the bone scan proved to be negative, as did the CAT scan of stomach, liver, and pancreas. However, a bronchoscopy indicated a non-small-cell cancer in the lower lobe of the left lung.
On Thursday, November 20, the doctors at St. Agnes gave me their final diagnosis. They said that I had fourth-stage lung cancer, that surgery was inappropriate, that radiation would not help, and that chemotherapy was highly questionable. They said that they thought the blood clot in the left leg was part of what they call Trousseau's Syndrome, which is a condition involving the release of a chemical by certain cancers into the system that causes blood clotting. While I was in the hospital, the doctor went down through a vein in my neck to the lower part of the body and inserted a permanent titanium filter to help prevent blood clots from reaching the lung.
The doctors said that their best guess would be that I had a likely life expectancy of approximately a year or less. With that diagnosis and those prospects I left the hospital and came home.
Now, let me tell you what I propose to do, and then let me make a few general observations. Twice a day I am taking injections of a blood thinner called Lovenox. It seems to be working, for the pain in the leg is almost entirely gone. As of the present, I have comparatively little pain, my only symptoms being a good deal of tiredness and lack of energy, some night sweats, and a very little pain at times in the left side and leg. I assume that this will change as the months progress.
I have confirmed the St. Agnes diagnosis with the best doctors at Johns Hopkins and also with the chief of surgery at Walter Reed Hospital, so I believe that orthodox medicine has done what it can. In the circumstances I am turning to alternative therapies, realizing that the odds are that none of them will work. But I have nothing to lose.
My approach will be something like this: If a particular treatment does not seem likely to poison my body, if it is not overwhelmingly painful, and if it does not seriously detract from the quality of whatever time I have left, I will give it a try. If it doesn't seem to be working, I will turn to something else. In the process I will try to determine what seems to have the best chance of working and give it priority.
During the past three or four weeks a great many of you have tried to call me. I am simply unable to deal with all of the calls, and I feel sure that you will understand. In fact, I am taking very few calls either at home or at the office, and President Maurer is reading and dealing with almost all of my mail.
This brings me to some final observations. The situation in which I find myself leads to a lot of thinking about values and purposes. I will try to live to the full whatever time remains to me, whether a month or ten years, and I will try to face "whatever comes" with what fortitude I can. Whether healthy or sick, old or young, all of us should live that way all of the time. Unfortunately we often don't.
On November 13, 1997, I spent my seventy-first birthday in the hospital. It was a good day, complete with friends and warm wishes.
Although there are many things that I might have done better, by and large I am content as I review my life. The National Federation of the Blind has been the key element for me, and I want all of you to know how moved I am and how grateful for the support you have given me, and that you continue to give, as I wage this battle. The expressions of love which have poured forth from you have been a mighty source of strength and comfort. They have underscored what we are as a movement and why we have a Federation in the first place.
As to some of the details of the transition I am making, I should tell you that shortly after I arrived home from the hospital I had a telephone conference with the delegates from the North America/Caribbean Region of the World Blind Union, at which time I resigned as President. I am pleased to say that NFB President Marc Maurer was elected to complete the remainder of my term, which expires in the year 2000. He will do an excellent job, as he has done and is doing as President of the National Federation of the Blind.
During the Thanksgiving weekend I attended the Board Meeting of the National Federation of the Blind, and it was all that one could have hoped. Our organization is now the strongest force in the blindness field in this country, and there is every prospect that we are only at the beginning of our accomplishments. Although there are problems (there always will be), we are united, firm in our purpose, and clear in our objectives. Above all, we love and care for each other and are not just an organization but a real movement. As I have already said, I am happy and content.
As I conclude, let me say once again what all of you individually mean to me; and let me also pay tribute to my wife Mary Ellen, who has given every support and all of the thoughtful, loving care which any person could possibly give. I know that she will continue to do so in the months ahead. And let me pay tribute to the staff at the National Center for the Blind. They have been a solid rock of support. And to President Marc Maurer, who will carry the load and lead the way wisely and well into the future.
This Open Letter to my friends and colleagues has been written from the heart to tell you what has happened, how I feel, and how I intend to proceed. Thank you once more for all that you have done and continue to do to make things better for me. And finally, may life be good to you in the years ahead.