Remembering Oscar

The dinner for invited guests following the board meeting of he NMSS was moving and provocative. The winner of the John Dystel Prize for MS research was interviewed. John Dystel, a promising young attorney, had died from complications of the disease in 20 03. John’s father, Oscar Dystel, supported the prize and did so much more.
Oscar was a giant in the world of publishing, the man who saved Bantam Books and reinvented the paperback as a backbone of the industry. Oscar changed to book business, probably forever. After his son’s death, Oscar made MS his cause. His creativity and management skills made the National Multiple Sclerosis Society a better p lace. Oscar died earlier this year at 101. The video tribute the other night was extraordinary. Oscar was friend to all who did battle with MS.
And Oscar was my friend. It just sort of happened. He would take me to lunch when he was well into his nineties, always asking about my writing. When I described a book as a mess, which happened more often than not, he would take my hand and encourage me. Oscar cared about people. And he was devoted to the cause o f MS. Oscar Dystel was a role model on both fronts.



Here is my conundrum for the day. I crave warmth, not just warmth, heat. It is midsummer, and I want more heat. Go figure. I hate air conditioning. Hate it. I ask a cab driver to turn it off and he looks at me like I’ve just been released from some place you do not want to be. This is not a small issue of personal comfort. This is a matter of survival. Cold air on my skin is something close to painful. When it is blowing on me, forget it.
Meredith likes air conditioning. Most people do. I don’t hold that against her. But I walk into a room where she is sitting and, man, I want to throw open the windows. Aren’t you freezing, I demand. “No.” How can you stand it? “Get a life.” Something is amiss here.
I have taken to questioning anyone unfortunate enough to pass this way. Do you want me to turn the air conditioning down? I offer. Everyone is quick to decline my generous offer. I am grudgingly close to admitting that I may not be normal, and I am the problem. But it is counterintuitive to be sitting and shaking like I am mixing martinis in my pocket and coming to grips with the probability that something is wrong with me.
I blame the MS. Of course I blame the MS for everything. This one has to be true. What else could it be?


A Quick Thought

I worry that I make my life sound grimmer than it is. A physician friend, a cancer survivor, sent an email commenting on shutting loved ones out It occurred to me I am casting myself as a loner, some wizened old mountain man with a white beard, living in an inaccessible place. My references to my cave probably have not helped dispel the notion,
Actually, I am not a creature of central casting. If I am making myself into a caricature, I apologize. I do not mean to be misleading. Believe it or not, I am fairly normal. As has been discussed on this blog, I do live in my head. How I sometimes see myself bares no necessary resemblance to what I appear to be in the eyes of others.
Everything I have written about my frustrations is true. You know that because so many of you share them. So this becomes a matter of perspective. Do I sit around with Meredith, beating my breast over my misfortunes? Hell, she’d be on the last train to Georgia. Writers can get carried away with their own words. It is all a matter of degree.
Please understand, I do not intend to overstate. As I attempt to make what I put together compelling, do I milk it? Good question. Journalists frequently push a point of view, whatever is said to the contrary. But keep this in mind. Disease dampens the spirit. Our collective mission should be to block diseases from extinguishing our brightest light.


Chronically Cranky

That sums up my condition, though there never has been an official diagnosis. No one has stood, head bowed, next to Meredith and softly said, I’m sorry, ma’am, but your husband is chronically cranky. May I ask you a question? he might have continued, how can you stand it? That certainly would be the appropriate question.
The most common symptom of chronic crankiness is an unrelenting scowl. If I could stand on my head, my smile would light up the room. Instead, Meredith walks past me at home and asks, “What’s the matter?” Nothing, I answer glumly. “Something is the matter,” she continues. “What is it?” If she sits down next to me, I know I am going to have to talk about it. I do not feel like talking about how I am feeling. That is because I feel lousy. The subject is boring.
Also I am tired. Big deal. I feel weak. So? Just hobbling around on my cane takes a lot out of me. I have to go to the city today. That will mean walking. Crossing streets. Moving through crowds. I did not sleep well last night. I am exhausted. This is small stuff, but it adds up, like the tab at the r wine store. We pay for every bottle, and we try not to complain. After all, everyone deals with something.
My wife cares, but I want to be alone. I cannot tell the lady to take a hike. So I retreat upstairs to the computer and say little, if anything. I worry that I cast a pall that spreads invisibly around the house like a virus, infecting anyone and everything in its path.
The lights grows dimmer as the clouds move indoors.
On some days, I just do not want to do anything. Too often, a book replaces a new movie. We share another evening at home. I am supposed to meet an old friend at Grand Central Station in the morning for coffee. I like this guy and have not seen him for a while. I am dreading our date. I feel crummy now and see no reason to believe tomorrow I will feel any better.
Usually I am an optimist, though you might never know that. Sometimes I peer into a mirror and wonder who I am looking at. I surprise myself with this tired sense of self. But the phone does keep on ringing. Friends reach out and want to get together. They do not get it, or they do.
Even as I am acutely aware of my dips into darkness, friends and acquaintances continue to act oblivious. Even Meredith has learned to go about her business and leave me alone. She does not cause the problem. She cannot change it. Self-awareness may be my salvation. I tell my pals to get a life when times are tough. Maybe I should do the same.


Problem Solved

There I was, sitting at the computer, minding my own business and wondering if liquor stores carry hemlock. Up popped an email from Sabrina Hall, the graphic artist who designed and built my blog. She is a talented lady. Sabrina had seen a mention of my contrast problem on Twitter and thought she could help. I was thrilled. Go for it, I said. Or begged.
I found this email from Sabrina waiting for me at dawn. “I have increased the font size and weight overall on the site for the post text and the replies. “ I checked it out. It seems easier to see. What do you think? This could mean I will be able to go on and on again. Sabrina is terrific, and, by the way, liquor stores do not carry hemlock.


Peering Through the Fog

The ship is running aground. The captain is ignoring his impulse to abandon ship. Denial has carried him through many a crisis. Why not this one? The craft remains upright. So far. The fog is rolling in. The shore and shoals merge as vague blurs in the distance. I would declare my intention to go down with the ship, but I do not believe the ship is going anywhere.
Oh, please. Writing is such fun, but I think there is a simpler, less pretentious way to say this. I grudgingly confess I simply cannot make out responses to the blog, posts and, of course, that is the best part. Otherwise, I am just listening to myself talk. What a dreary situation that would be. I thought I had broken through the clouds, but no.
This began with the pulmonary embolism, made worse I assume by the psoriasis and shingles. The usual three days of steroids seemed to make a difference, to improve my vision marginally. I am sorry to say whatever improvement did not last. So here I am, back at square one. What a revolting development this is. Would someone explain to the doctor who used to say that?
So what do we do?
I thought about picking up my blog and taking it home. It would go nicely next to my football. No. Let’s keep the Journey Man alive and well for all of us. Capital letters?. DOES THIS HELP? Why am I asking you? Maybe I will join the discussion on days when I think I can do it. Anyone with MS knows it is a moving target. Some may have noticed my recent silence. It is not lack of interest, only my inability to make out words.
I am not giving up on this. Please don’t you. By the way, I have given up the plan to rob banks. Can you imagine me with a weapon in my hands? I would not carry a gun. I loathe guns. But you can hurt innocent bystanders with a slingshot or even a peashooter. I could not live with myself if that happened.


How we choose to Live

When Blindsided was published, Barbara Walters hosted a 20/20 about Meredith and me. Barbara kept asking me in obvious incredulity, “Why do you continue to take subways?” her implication being, it is so dangerous down there. My answer was quick and clear. Because I can, Barbara. Of course only someone who who would never set foot down there decides it is perilous. Watch your step, and you will be just fine.
The real question that is raised is, how do we want to live? I already have written about the upside of taking some chances. Isn’t the follow up, how safe do you want to play it? That may reflect choices we all make that separate us. Of course there is no right or wrong. This is a gut decision we all have to make.
I can only speak for myself. I combine an urgent need for independence with a low tolerance for boredom. For me, boredom is among life’s fiercer enemies. The sedentary existence is not for me. Meredith used to get on my case for jaywalking. Crossing a busy avenue when the light is green is not a recipe for longevity when you are legally blind. But it can be exciting. Also it is so reckless that even I was sensible enough to stop.
My only question is, are you pushing yourself to get out there and live? I am well aware that because of severe physical limitations, not everybody can. But foot drop does not mean we have to drop off the face of the earth. Do you exercise as best you can? Belong to a gym? Upper body strength has saved my butt countless times when I was about to fall.
I think we should band together and rob banks. That would be very good exercise. It will be good for our blood pressure and offer a sense of accomplishment. Reporters will write about us. We will all be rich. We can donate some, not all, but a portion of our take to MS research. We can be heroes. What do you think? Sounds pretty exciting to me. We need excitement. I will lay out the plan each day from my bunker somewhere in the South Seas and dclaim I ever knew you.


Taking Chances

Living the lives we want is all about choices. The computers in our sculls process where we choose to travel and the best route to get there. Then decisions are made. Many of us who grapple each day with physical limitations program ourselves to take the safe if not slow road to get us where we are headed. In due time we reach our destinations. Taking the well-paved road sure is boring.
Ask a formula one driver who spends his career driving at break neck speeds, taking chances and defying death. Michael Schumacher holds the record for the most Grand Prix victories, having won 91 times. He makes choices every day. Obviously his track record is pretty good since he is still walking the earth. I am not suggesting all of us become F1 drivers, only that maybe we should be more open to adventure than many of us are.
Christopher writes that when he pushes, he gets hurt. He describes pushing himself on spastic legs and taking a header that landed him in the ER with a headache and bruised ego. “The universe took me down a peg for my ignorance and arrogance. It also could very well have l taken much more.” I wrote back.
Staying in the race is important on a multitude of levels. Refusing to concede has its merits. We all make dumb choices. Keep them to a minimum and live with them. Better than taking the easy way out. I hate casinos, but I am a gambler of sorts.
Don’t we all have to be? When I spent part of two years in Beirut and El Salvador covering the fighting for CBS News, even as my eyes were failing me and a limp growing worse, I was well aware of the risk I was taking. Argue that this was reckless, and I will concede the point. But I had life altering experiences I would not have traded for the safety and security of home. How do we assess risk, and what is acceptable? That is up to you.
I am not writing prescriptions, only suggesting that playing it safe may mean living less. And when you break your necks, don’t sue me. We decide these things for ourselves. We pays our dues and takes our chances.


Happy Independence Day

July 4th is fast approaching. And so we celebrate our independence from a ruthless, even heartless tyrant who once controlled our lives and defined what we could be. There was a generational dimension to the conflict. Young men and women called themselves Americans and fought to the death to be free. Yet many if not most of us do not know true independence because an enemy within is holding us hostage. Devastating illness.
According to the CDC, just about half of all adults, 117 million of us, live with one or more chronic conditions. One of four adults has two or more of these illnesses. These are the leading Causes of death and disability in the United States. Heart disease, stroke, cancer, diabetes, obesity, and arthritis are among the most common and costly of all chronic health problems.
And Friday, we celebrate our freedom?
I am not independent. I am doctored to death. I need others to assist me in life’s little tasks, to take me where I need to go or pick me up off the floor. We are not taking care of ourselves. The President is sending hundreds of advisors to Iraq, and then hundreds more in his variation on an old theme. Vietnamization. We never learn.
What we all must learn is that baby boomers are the bulge in the population. As we age, the number of chronic conditions we will face increases proportionally. We are letting ourselves down as we head into our so-called golden years.
So run Old Glory up the flagpole. Enjoy your picnic and set off your fire works. Nothing wrong with that. But bare in mind, you are not independent. You are heavily reliant on others and on a government capable of finding cures but unable to find the money to do it. Check out the projections for virtually every disease known to us. Get scared, and ask yourself who is going to answer the door when your bell rings in the dead of night.



I slipped on the banana peel and landed with my head in an extremely odd place. It was difficult to see, ironic because my detour into darkness caused the mishap in the first place. The maneuver did not feel right, and I am struggling to find my way back into the light. I think of myself as generally upbeat. Please chock this up to a bad week.
Actually, once you decide to illuminate a situation, the rest takes care of itself. Forays into despair can be your garden-variety self-indulgence. I tell myself that bathing in self-pity can be excused if you stand up and climb out of the tub frequently enough. Sounds a lot like letting yourself off the hook to me. I never have felt comfortable as a role model because I make it up as I go along and certainly do not hold the keys to the kingdom.
I wear vulnerability self-consciously. “You don’t tug on Superman’s cape, Jim Croce warned. And I do not cook with kryptonite. My superman complex is well controlled. My foibles and flaws are on display everyday. No reservation needed.