Proposal

I am an absentee landlord again, no longer shucking Oysters on Cape Cod but shoveling salt in the mine. Push has come to shove. My book proposal goes out after Labor Day, and it is not done. I feel as if I am back at school, attempting to explain why my homework is not ready. I am going to end up in detention, I know it. What happens if the book is bought?
I worry that the snow will be over my head for a solid year. For me, there is no pressure like writing a book. My history is working crazy hours and trying to adjust to sleep deprivation. Self-doubt and second guessing will fill my days. Why am I doing this again? I am crazy enough as is. I have tried to bend time. So far, it has not worked.
Kvetch, Kvetch. If this is not bad enough, think how obnoxious I will be in the book is sold. Whining and whimpering, groveling and grousing, I will be begging all of you to write the thing for me. I had the idea. I did not say I want to write the damn thing.
Can we take turns writing the blog so I do not feel guilty? Seriously. I am going to see if there is a way to pass it around. It would be fun. You guys respond to each other so well all the time. Why not try this? You have nothing to lose. You can take the lead and set an agenda. Would you give it a try? Geez. I am a lazy bastard.
For all you know, I will be in Mexico sipping Tequila with Donald Trump.

53

Attitude Wars

Great responses to The Importance of Staying Stubborn. The battles raging in our heads seem to command more attention than the silent wars in our central nervous systems. Clearly we are attitude centric. Arms and legs, fingers and unmentionable parts of our bodies may falter and fail us. Still we focus on matters presenting themselves north of the neck.
This is not complicated. There is little, perhaps nothing, we can do about the loss of function. But we control our attitudes. Long ago, I decided that as a matter of pride and my struggle for control, I would bring calm and dignity to the conflict.
This is no small thing, at least for me. I know pride goeth before the fall, whatever that means. But I will be damned if I reveal how I really feel. This is not dishonesty, at least in my mind. Our view of ourselves becomes a private player, perhaps even a self-fulfilling prophecy. We are not in charge, but actually we are in charge. Once again, I look to psychiatrist Viktor Frankl on his years in concentration camps during the holocaust.
“Everything can be taken from a man but one thing: the last of human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
Frankl was a hero. I am not. I do want to be strong, and I am determined to will that into being. I feel better about myself this way. If I can help others, I help myself. No. I am not playing Superman. I neither own nor rent a cape. As with all of us, I am just a guy making it up as I go along, and I have a long way to go. This is a war we can win, so it is worth fighting.

61

Importance of Staying Stubborn

I am sick of being called stubborn, as if it is a crime.
When my doctor and I found ourselves at the Vatican to participate in an adult stem cell conference a few years ago, we toured the endless long corridors of the Vatican Museum on our way to the Sistine Chapel. I had declined to use a wheelchair, which I soon regretted. My neurologist watched me struggling to stay on my feet and later commented that I certainly was stubborn.
Years earlier, when Blindsided was published, Barbara Walters interviewed Meredith and me for a long segment on 20/20. Barbara noted that I still was taking subways and demanded to know why. I understood from previous conversations that the image of me stumbling along some platform with a train roaring into the station was unfathomable to her. When she demanded to know why, I leaned into her and touched her arm. Because I can, Barbara, I answered.
I had been riding the subways for decades and was not about to jump into a taxi to make someone else comfortable. Meredith had given up the argument long ago. Am I stubborn? I guess so. And so what? All of us should be stubborn and cling to who we are and how we want to live. There are no medals or merit badges in play here, only small satisfactions and the strong desire to maintain a strong sense of self. I think those are critical in combating a chronic condition.
For me this is about control, a valued commodity most of us are forced to trade in much too early. I have stopped paying much attention to others. I listen attentively to myself. I decided what is sensible and what risks are worth taking. Others see risk where I think slow, steady movement is almost foolproof. When in the subways, I keep track of who is around me and stay away from the edge of the platform.
That is called common sense. I see no downside to staying stubborn. I am not going to abandon my identity until it leaves me. I trust my instincts. I believe I will know when to give up and fold my hand. And by the way, after I ran into my neurologist in that crowded corridor at the Vatican Museum, I spotted an empty wheelchair and sat down. I may be crazy, but I am not stupid.

67

A Wish

Meredith and I are going to Chicago for our daughter Lily’s college graduation. She is our youngest and follows her brothers into the workplace. She actually has had a job lined up since December. We told her we are changing our names and moving. What she said in return cannot be repeated to a G rated audience.
I am going to be off radar for almost a week. Probably most of you own cell phones that can send emails, make French toast and do your taxes. I only send and receive calls. How retro. When I check the blog with the intention of responding, it quickly becomes clear that you are talking to each other. I usually feel that it would be intrusive for me to weigh in. A blogger is motivated either by a wish to ignite a conversation or the need to sound off. I bore myself. You guys are a self-sufficient group and need no prompting from me.
In the five days I am away, please figure everything out. Answer the unanswerable. Cure MS and other chronic illnesses. Do what I never will be able to do. Come up with solutions. Dabble in wisdom. Bring us peace.

38

Hope and Optimism

What is the difference between hope and optimism? Are these words interchangeable? I think optimism is a natural product of hope. I cannot be optimistic without hope. On the other hand, I can hope with no sign of optimism. Thoughts. Yes. I still am writing my book proposal. Please forgive this short post.

29

Last Tango

Yes. I was AWO.L. Throw me in the brig. Bread and water. Don’t forget the gin.
Actually, things have been tough. I feel weird going down that road. I realize the hardships so many of you endure. But I believe there is no hierarchy of suffering. All of us live with our own realities. I have tried to keep quiet about mine. But this is a difficult time. Welcome back to the club.
I have tweeted (stupid word) that I have lost more vision. For twenty-five years I made my living creating in a visual medium. That irony never has been lost on me. Cronkite and Rather both knew I had MS. Neither said anything, nor did they acknowledge the illness. They just trusted me and believed I would be honest with them if ever I felt I could not do something. I, in turn, tried to prove I could do everything. I stood up to the communists in Poland and was there for the ascent of the Solidarity movement. I covered wars in Beirut and El Salvador. I was pretty reckless. In my need to prove to myself I could cut it.
Now I fear my luck is running out. I am walking perilously close to the edge, and the drop is steep. I have had bouts of optic neuritis on and off for decades. My vision is being chiseled away. How odd that I am so hung up on the prospect of a wheelchair when my chosen way of life is so threatened by vision loss. I can live with where I am now. I just do not know where the train is going. Sound familiar?
Fear for the future is built in when a person has any progressive illness. I always was able to push fear away. That effort is getting more challenging. If I do not share this, what the hell am I writing this blog for? I am worried. Scared? Maybe. Maybe not. Self-confidence has never failed me. My commitment to adapt and overcome has sustained me. I believe that is true of the many.
I am tired of playing Superman. I guess I volunteered for the part long ago. Meredith thinks I am better suited to play Goofy. The disease is goofy, if you ask me. But the tango continues, and it is too late to stop dancing.

59

The More things Change

Recently I emailed with a newly diagnosed young woman who was struggling to find perspective on her new acquisition of MS. It struck me that using email instead of the phone allowed her to distance herself from the subject. The Internet: an electronic coping mechanism. The dialogue seemed all too familiar, harkening back to my uncertainties more than forty years earlier. Plus ça change, plus c’est la même chose. The more things change, the more they stay the same.
The issues in my life in my mid-twenties have not changed much. What dio I tell others, especially in the workplace? What do I say to a new woman in my life? How do I live with ambiguity and uncertainty? And the list goes on. I think about all the matters relatingf to MS and a myriad of other conditions that we have batted around on this blog. Our agenda is robust and does not change. Questions seem ageless.
There are no answers, of course. There is no right or wrong. Our journies are our own, appriximating the trip;s and falls others endure. More than one friend has suggested to me that I must drive myself crazy. Yes, I do. Aesyhylus wrote that he who learns must suffer. And that, too, is truth. If we choose not to question, we become pawns of a disease. If we make ouselves mad seeking wisdom, we choose a direction at the fork in the road just ahead. We reject passivity and get tough with ourselves. What is wrong with that?

23

Chill? No, Thanks.

Some of you and others in my life have counseled me to chill out when I speak or write about the various and predictable losses of function. Some have pointed out that tension only aggravates problems and works against us. No doubt that is true. Still, my old and probably tired mantra to fight on keeps breaking into my head. That means no let up when reacting to cognitive problems.
I had a professor in graduate school, a combative former President of CBS News and Murrow’s old partner, named Fred W. Friendly. Fred was a force to be reckoned with. He used to preach “the need to have a fire in your belly.” That came to mean the willingness to take on challenges with passion and commitment. That sums up how I tried to approach my work, though with a broader application.
I realize not one of us is going to beat an incurable illness. But I take satisfaction in railing at the dying of the light. For me, chilling is going limp, buying into passivity. Yes. Tension and aggravation can cause their own problems, but engaging and fighting the good fight are energizing. Eric Kandel, who won a 2000 Nobel for his work on memory, was the person who explained to me the, use it or lose it approach to sharpening the mind. He pointed out that to a large extent; the healthy are in control of their brains.
I am not a healthy people, but that does not mean I plan to cede control voluntarily. Fighting the good fight creates a positive energy that carries its own benefits. They may be purely psychological, but I will take what I can get. Fighting MS and a myriad of other conditions is in large part a mind game, and I plan to play hard.

38

Forget About it

And I do. I am worried, which strikes me as a new experience. I am not a worrier. I do not fear the worst with every new sensation or lack thereof. This feels different, though, and is coming at me with alarming speed. I forget when it started. Of course. In recent months I have become hyper-aware of all that is falling out of my head. I doubt there is anything I can do about it.
Meredith must tell me over and over what she has to do on a given day. It is gone long before she is, in fact, soon after it registers. If that happens at all. Phone messages have little chance of delivery, and the everyday, this is what I did today does not stand a chance.
I meant to tell you something…
Is this MS? Age? Too many good times in the sixties? Your guess is as good as anything I can come up with. But cognitive issues are biting my butt, and I want to do anything I can to change direction. I understand there is a use it or lose it component to brain function. I read newspapers and books. I engage in many conversations about news and current events. And I am writing my fourth book. Don’t those count as brain pushups? I am not sitting around drinking cooking sherry, tempting though it is.
Maybe I simply am joining the aging masses, but I do not think it is that simple. Cognitive testing is not in the cards. Why would I go through that? I am not handling millions or flying airplanes. And if there is nothing I can do, what is the point? Is there nothing I can do?
After 135 blogs, I just forgot the password for posting this. I rest my case.

15

A Word from the Wise

Virginia Woolf on illness.
“Consider how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed. ..It becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.”

See next Post.

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