Open Letter

Open Letter

Kenneth

Jernigan

Open Letter

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 business—first 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 communicating—especially 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.