Before last week’s dinner, I sat down with nine guys from the Mandell Center for Multiple Sclerosis in Hartford. Mandell deals with urological issues related to MS. This is the only program of its kind in the country. These guys were a support group. Imagine that. Whoever heard of a male support group talking about sex?
What was so interesting was although there are various urological issues associated with multiple sclerosis, there are specific sexual problems that go hand in hand with deeply troubling urological issues. Ninety percent of men with MS will experience a urological issue, many of them sexual.
We sat in a circle and talked openly, without hesitation or embarrassment. Have you ever talked openly about the need to wear diapers because of incontinence? Dr. Marlene Murphy-Setzko is a urologist specializing in MS. She put the group together and says continence and sexual function define quality of life for her patients. They say self-esteem is a big problem.
“I took seventeen patients to a restaurant, many going for the first time. They had never been out because of their embarrassment at incontinence” she said. “There is a lot we can do for these people.” Marlene told me phobia of catheters is common and keeps men away from doctors. “Men would rather use crutches scooters or canes than have a catheter put in.” Dr. Murphy-Setzko went on to say that incontinence put patients in institutions. Hard to believe in 2014. The more things change, the less they change.
But get these guys together and they want to talk about their sex lives and sexual dysfunction. They do it with ease. Many women are treated, and men are encouraged to bring partners and spouses. “They need to understand the problems,” according to Marlene, “ and know it is not their fault.” The it can be decreased libido, trouble maintaining erections and achieving orgasm.
Sexual impulses are transmitted through the spinal cord. Lesions will block those signals, too. Medications can help some of these problems. Of course, here is the famous little blue pill. Decreased libido and a numbed genital area probably are out of reach. It is too bad so many of us remain locked in the closet on issues of sex. Patients can be helped, but they have to step out in the light.
These problems in men are too little recognized and underserved.
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?
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.
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.
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.
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.
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.
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.