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.

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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?

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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.

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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.

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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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What’s up, Doc?

I think we are wading through thick, gooey mud, stuck on what we believe other people think of our physical realities and how they relate to us. Or do not. I for one want to find my way back to dry land. I have asked, who cares? Obviously, a lot of you. I would tell you to get a life, but I started the food fight, so I guess my options for positioning myself above the fray are limited.
If it is fair to label this an obsession, I wonder why this seems so important to so many. I cannot abide amateur shrinks, but here I go. I will begin with the guy in the mirror. Maybe I am so uncomfortable with if not alienated from my body and view of myself that I project it on others. I see myself as flawed and physically weak. Those observation ns are grounded in reality. I move awkwardly, hobbling on a cane, though I am not in a wheelchair, at least yet.
I am certain many of you can outdo me on physical limitations. Are we judging ourselves harshly and taking what we think of ourselves and attributing it to others?
I know I think less of myself because of my illness. I know I apologize profusely to all who are around me when I fall in New York. What is that all about? I certainly can be a misanthrope, perhaps defensively. I wonder if any of you can relate to this. Maybe carrying those chips around on our shoulders is making us tired of playing a game that can injure a brain as much as football.
There will be no charge for this session.

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Again, Who Cares?

Good reaction to, But You Look so Good. Clearly a potent subject. We seem to return to it from time to time. Maybe demyelination creates raw nerves. I wrote that I have stopped caring what people think or say. I do not think that is where most of you are right now.
Johanna asked a simple question. How should a healthy person greet/talk to a person with MS, and he/she knows the person has MS? Omit any reference to health and/or appearance? A simple question can have a complicated answer, certainly one that not all will get behind.
How about normally? Why would anybody feel compelled to bring health or illness into a greeting or casual conversation? I, for one, don’t need to be reminded of my health problems. If we are talking about a conversation with a real friend, presumably we know each other well enough to put the rule book away. Both of us can trust our instincts.
In a casual conversation, how about nothing? How are you? is among the most insincere questions in the language. Want to shock somebody? Tell the truth. That should shut him or her up for a while. Walking on egg shells must be tiring. When strangers ask me inappropriate questions about my limp or whatever, I shrug and say, bad leg. That seems to be enough, since they really do not want to know, anyway.
Maybe this is much ado about very little. I dropped the chip from my shoulder a while back. I hope we can stop driving ourselves crazy with concern. Who cares? I guess I have asked that already.

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Hope in Spring

A thought for a lovely Spring weekend.

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Emily Dickinson

11

But You Look so Good

Somebody actually said that to me the other day. It had been years. What did you expect, I silently asked, a cadaver? People mean well, but what they actually are saying is, you cannot possibly be sick. Please don’t be sick. That makes me uncomfortable. Our long ago Irish babysitter over heard someone say that to me once. She suggested I reply, “It’s not me face that is sick, stupid.” I told her that others would misunderstand and believe I am kidding.
This time, I have a different thought. I do not care anymore. We have gone back and forth, comparing notes on how insensitive or rude others can be. I just do not care. Really. I have spent too much psychic energy and time reacting to others. Who cares what they say? We never are going to win that one, anyway.
Walking or riding around in an agitated states lets them win. Ignoring those who do not get it or care to strikes me as a much more reasoned way to live. I would rather save my anger for others, those who fail me big time. The New York Yankees, for example, or the guy at the local liquor store who routinely runs out of Bombay Sapphire. For them, forgiveness does not come easy.
I was even going to stop paying heed to the chronically healthy, but I enjoy baiting my physician friend who never tires of reacting to the term.

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Staying Up

And I do not mean staying awake. When we know we are slipping, as life’s little tasks grow difficult, inevitably we have to admit in a whisper that something bad is happening. I am so invested in my positive attitude, so caught up in the stem cell trial; I cannot bear to admit to myself that I am slipping. But I am weak, walking like nobody I know. Admitting a setback possibly but historically unlikely to be temporary, is a statement of failure and just is unacceptable. Please, no.
Why would I think I can declare victory before the race is run? This is a marathon, not a sprint. Oddly, I think I know what is happening but seem powerless to steer clear of the choppy waters. My two battles with colon cancer have left me with imperfect plumbing. Cancer and MS do not coexist well. Cancer and aging do not dance gracefully. Greater detail is too much information. And what is the predictable result of my anatomical shortcomings?
Stress. Big time. All of us understand the dangers of stress. I know that stress elevates my body temperature and problems kick in. I also know that my losses likely are permanent. That does not promise a rosy future. I always have outrun the opposition, outsmarted my enemy. This time feels different. I am worried but not ready to concede.
Where do we get the strength to stay up and keep going? We are emotional alchemists, spinning straw into gold. We just do it. I do it. We tell each other and convince ourselves that the show must go on. I know my kids understand that is how I feel. And they absolutely realize there can be no victims in this house. But when the lights are out and all are safe in their beds, wherever they are, who knows what fills a heart?

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