Oliver Sacks

Any one living with a mystifying neurological disorder should take note that Oliver Sacks died yesterday. Sacks was a physician, a neurologist of note and a towering literary figure. He brought neurological disorders to life. His book, The Man who Mistook his Wife for a Hat, helped me to understand, even appreciate, the startling conceptual oddities that have become the highlight of my cognitive roller coaster ride.
Reduced to its simplest, I felt this neurologist understood me, a rare occurrence. We crossed paths only once, in a television studio before a program I produced. He seemed to be an accessible, easy person. We talked. I never mentioned my MS. I only listened. I could not get enough. Situations such as that teach that it is a privilege to be a journalist.
I bring Sacks up for a reason. Michiko Kakutani wrote the obituary in The New York Times. She is very good. I felt that she could have been thinking of us as she explained the man. Kakutani wrote of his case studies, “They emphasized people’s resilience, their ability to adapt to their deficits, enabling them to hold onto a sense of identity…Some even find that their conditions spur them to startling creative achievement.” Right on target. He knew the struggle.
This doctor looked past the conventional, limited views of patients, the ordinary evaluations. His books made it clear there is a loftier take on these illnesses. These conditions “can play a paradoxical role in bringing out latent powers, developments, evolutions, forms of life that that might never be seen or even be imaginable in their absence.”
Oliver Sacks believe d in his patients. He brought a nobility to his work.

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Coming Up for Air

Sometimes the light flickers, then clicks on. It is an epiphany demonstrating my flair for the obvious. A cheerfulness and sense of humor belie the darkness that surrounds. That foreboding sense of being trapped deep underground weighs heavy. It is a load that is hard to lighten. I recently came through an exceedingly rough patch. I cannot explain my façade of tranquility that is so personally important to maintain.
I probably wrote of my vision loss a few months ago, coupled with a new weakness in my back that translates to walking expeditions with less distance traveled. I am not sure what I wrote, but I assume it understated the gravity of what I lost. I do not spend time worrying that now I mistake plants for animals. The distressing part for me is that I have crossed a border, just what I have dreaded for so long. I am losing the ability to read and write in a high functioning manner. I experience this anew every day. I expected this day was coming someday.
Details are not important here. The point is, I need to come up for air. I need a time out. I have to get a grip, to stay calm, assess and reassess the situation and refine the plan that has emerged in bits and pieces ever so slowly. This is important. We know that progressive diseases progress. Anyone who is shocked that life only gets harder has missed a rather important point.
There is nothing to be gained by beating my breast or crying out to the heavens. Wailing only hurts your ears. Weighing a new reality and considering options seems more constructive. I have survived this illness for more than forty years. Why stop now? Coming up for air is not an easy swim to the surface. I have written that chronic illnesses are in no small part a mind game. We have to keep it real but push away even subdued hysteria. There is no time for that. This is more complicated than, say, building a wall along the border with Mexico.
This, too, shall pass. Life goes on.

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But I Digress

I appreciate digression. Changing the subject can be a relief. Laughing is therapeutic. Silliness interrupts cycles of despair or just self-absorption. We can breathe free, if only for the moment. So I think wandering to a new path in service of the silly helps us deal with matters that are dead serious to all of us.
Pacing is critical in a marathon. Sprint for 26+ miles, and you will finish in a box. I find it tough enough to stay on my feet as is. Fatigue, if not exhaustion, is wearying. We live that fact each day. Chuckling is taking a rest. We can stand around and hyperventilate together.
The bad news is that too son it is time to get back to work.
Did any of you see the NBC report about the doctor who told patients they had MS to lure them to undergoing expensive tests and therapies? Surprised? Hippocrates must have rolled over, wherever he is hanging out these days. Medical fraud seems like a particularly cruel dishonesty. Scaring sick people out of their hard earned money seems pretty cynical. Individuals are so vulnerable after a bad diagnosis. This is another reason to seek second opinions.
It’s good to be ringing my hands again.

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Journey Woman

This is crazy. My recent post about Meredith’s eye is bruising my ego. We all know that men’s self-esteem is built on bluster and can be carried away by a stiff wind. The numbers are not blowing my way. I have received more responses about Meredith than from any of the nearly 150 Posts I have written, many about me. You sure like/love her. I don’t get it. I mentioned that to Brooke, who suggested I am not as interesting and certainly hardly as entertaining as my wife. She sure knows how to hurt a guy.
Then Brooke sends me the most up to date Google Analytics, which traces the rise in the number of hits from about 30 thousand per month to more that 53 thousand since early last week when Meredith’s unfortunate accident was revealed at great expense to me. After years of fighting MS, it has become obvious to me that life is not fair. And now this.
I have learned that people like Meredith. A lot. By coincidence, so do I. I called Meredith to tell her about this unhappy development. The woman wondered if she should take over the blog. I hung up on her. I assume someone will now chastise me for being disrespectful to my wife. We seem to have a sense of humor gap at work here. I respect Meredith. I wish her well with her new Journey Woman blog.

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Bouncing off Walls

Here’s the deal. I have not written about this. But today is the day. I am the one in my house who has multiple sclerosis. I am the only one who is legally blind. I have limited depth perception and glance off doorways if I am not careful – and I am very cautious – because my lateral perception also is deficient. Yet I survive because I have learned self-preservation.
I am married to a woman who has not. Meredith is a klutz, like a drunken sailor on a bender who collides with stationary objects and is a danger to herself. Last night, while paying a visit to the bathroom, Meredith fell over a suitcase, slamming her head against a dressing table as she plummeted south. The dog was so embarrassed for her he did not even bark. Must have been worried about what the neighbors would say.
The woman is staining the walls, what insects do to windshields. Meredith’s doctor was concerned about a possible concussion and ordered a CT scan. What did they see? I asked. A brain, by any chance? Her doc wanted to know if it had occurred to her to turn on a light.
It may be time to hire a sitter to protect the poor, dottering dear from herself, especially after dark. She is a highly paid professional who long has been a role model for others. Her work on 60 Minutes, Today and now her own show has been a beacon for other woman. A candle in the wind, I say, if she does not wake up and watch where she is going.

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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.

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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.

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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.

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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.

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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.

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