Polio | College as a Waste of Time

Subject: Re "Polio" and polio

Mr. Milam --

A few weeks ago, my daughter discovered, and brought to my attention, your 1999 RALPH review of the book Polio published in 1997 by the University of Rochester Press.

I'm a veteran journalist (49+ years) and author of 8 commercially published (no vanity press) non-fiction books, so I am used to bricks and bouquets, but I feel your comments about me were peculiarly cruel and unwarranted.

My contribution to Polio came about in this way. My son was in his first year of medical school at Case Western Reserve (on a Navy scholarship), and took a seminar in infectious diseases with Drs. Tom Daniels and Fred Robbins (the Nobelist). It came up that they had a book on polio under contract, but the publisher was demanding more human interest and non-medical memoirs. My son piped up, "My Dad had polio and he's a writer, so why don't you ask him?"

My memoir, whether you like it or not, resulted. The subject --- my experiences over time --- frankly was not something I had dwelled upon much over the years. I'm sorry if your experience, evidently because of greater disability, was otherwise.

Indeed I had to spend many hours of otherwise thoughtless routine, mostly going back-and-forth mowing the yard over several weeks, to bring back the memories and then they were so detailed I could not believe in their validity ("false memory"). So I went down to Louisville and read all the newspapers for the summer of 1944 for verification. The resulting memoir was the first and only professional account I had written about myself; all previous and subsequent writing has been that of the observing journalist or commentator.

I have no idea why Daniels and Robbins chose to make mine the lead essay in their book. When I first read Mrs. McLaughlin's account, I cried out such that my wife exclaimed, "What's wrong?"

After Polio was published, I was asked by a Kentucky historical society, The Filson Club, to prepare a scholarly version (social history, you know) for its journal. As a consequence I tracked down the three boys I had remembered in my essay, to find out what had happened to them, how they had fared. After more than 50 years, this was quite an assignment, even if self-imposed.

One was still in Kentucky, one in Florida and one in California. Two I met with, the other I talked to on the phone and exchanged letters. One I sat beside at our high school reunion and continue to exchange humorous emails with. Of the three, I found that two had pretty much the same attitude I had --- to quote one, "This is the hand I was dwelt, so I have played it to the best of my ability." The third remains bitter, but clearly has made the best of it anyway, becoming a sports writer rather than an outstanding athlete, later a banking executive, now retired, still today playing golf from a cart despite two paralyzed legs.

I amended my memoir to include the accounts of how the others had made out --- I thought one of the stories was especially heroic and inspirational. Unfortunately, the journal changed its editorial policy and it was canned. However, they did publish a separate scholarly (i.e, footnoted, etc., and naturally unpaid) article I wrote on how the 1944 epidemic evolved and how the public learned of it. I figure I owed it to my fellow survivors.

At the time I wrote my original memoir in 1996, I had not encountered the Post Polio Syndrome. Today that is not the case, and I have lost almost all the lingering function of my arm. I have found it a great annoyance, such as dropping the communion wafer a few weeks ago, but I am not bitter about it, or mad at the world. In addition I believe some other long-standing thoracic problems I have are probably polio-related. So what.

And I still hold to the thesis There Are Some Better Off and Some Worse Off, and believe it applies for a lot more than just "polios" in this world.

What's your story?

Dear Mr. Davis:

Thank you for your thoughtful letter.

The point I made in my review was that sickness, disability, and loss hurts. It hurt then, it hurts now.

You and I have been profoundly changed by what occurred to us. We can tell the rest of the world that it is not such a big deal. This may be important to them (and to us) early on, so we won't be seen as losers, or whiners, or worse.

But to be brave non-stop (or, in your phrase, "inspirational") with our family and friends extracts a heavy price. Not just from those of us who have been long disabled, but from someone who is just beginning to learn the truth of our world.

I am thinking of the thousands and thousands of people in this country who are, each year, rendered quadriplegic or paraplegic by disease, a stroke, a car accident, a bullet, a fall. For us to tell them that they must show a "stubborn refusal to give into their disability" is harsh advice indeed.

We are telling them that they must not grieve over the loss of something as vital as the physical body. Thus they are stuck with "Not only do I feel bad --- I feel guilty because I feel bad."

§ § §

You write, "I still hold to the thesis There Are Some Better Off and Some Worse Off, and believe it applies for a lot more than just 'polios' in this world."

I invite you to go into any VA Hospital, to the ward of those who are living with the long term effects of disease, paralysis or stroke. I want you to explain on this theory to them, especially the from-the-neck-down quadriplegics. After you do that, I want you to write me and tell me (1) how they reacted, (2) if you were able to draw any comfort from that experience.

"I amended my memoir to include the accounts of how the others had made out," you write. "I thought one of the stories was especially heroic and inspirational."

I contend that at our time of life, you and I should no longer be seeking out "heroic and inspirational" tales of disabled people. These may be meaningful to the Reader's Digest/Fox TV set --- but not so to those of us who have lived with the reality of disability for so long.

We learn soon enough that most of us are not especially heroic. We also learn that we may be an inspiration to others, but it's a skewed inspiration, available only to those who cannot see into our hearts.

I mentioned Hugh Gallagher's book in my review. It might be helpful if you were to read his FDR's Splendid Deception. The point he makes so artfully is in his last two years of life, Roosevelt may have been profoundly depressed because he had been forced for so long to live up to a myth that everything was fine, that he was "merely" a recovered cripple.

"What's your story?" you ask.

My story is that for 25 years after polio I did a Roosevelt. "I'm fine," I would say. "No big deal." People thought me inspirational.

However, for the last quarter-century, I have been on a different road. As a M. D. friend of mine said, when I showed him your letter,"I am a big advocate of moaning as a healing tool. My cure for a bad cold is to take three aspirins with a double scotch on the rocks, to climb into bed, covered with many blankets and quilts (like a sweat lodge), and to moan loudly. But it's like a tree falling in the forest. If there is no one to hear it...

"It's the same for moaning. Someone must know the troubles we've seen. Someone must share our sorrow. We don't want a cure. We just want someone to know.

"I don't moan all the time. I have a life. You do, too. But I think we are fortunate that we can have moments of moaning, and friends and a readership to hear us moan."

If you have survived the loss of your arm and the onset of PPS without internal pain (and without occasional moans) --- you are one of two things: (1) You are a saint, or (2) You are hiding the truth of it extremely well.

If the first, I would like very much to get to know you, because I have a great deal to learn from you.

If the second, I am going to guess that you would not be able to communicate the true agon of it. Only your wife, children and friends could fully convey this to me.

And to you.