Touching the Past

I stare out the window, realizing the snow is falling faster and more fiercely than I have seen, perhaps in my adult life. Memories of relentless snow from a Connecticut childhood run episodically on the projector in my head. Meredith just vanished into the blur of white, checking out a nearby trail. I think of the posts I have written about my life as a spectator, watching others do as I strain to even just see. Sometimes I just bore myself with frustration but cannot stop.
I cannot make my peace. I am not sure even that I want to. Making peace means accepting. For me that is a step too far. Throwing in the towel means surrender. What is the point of prolonging a fight that cannot be won? I am grateful to be included in a stem cell clinical trial. My expectations remain rigidly in check. Slowing the disease is significant, but there will be no reversal of fortunes. I am not a pessimist but a realist. I feel I know.
Does the hurt of permanent loss have to commit one to a life tinged with sadness? I enjoy a good life. I really do. I am privileged and try never to forget it. Yet it does not feel like a contradiction to admit that I desperately miss normalcy, the ability to do. That will not change. Perhaps I keep that hurt alive through memory. I do not want to forget. Sometimes I feel I can almost touch what is gone. That may be self-indulgent, but these memories keep what once was real and reachable. Maybe that is good, because it always will remain a piece of who I am.


Searching for Dr. Right

I like my doctors. There. I said it.
I was surprised recently to silently admit that to myself. Luckily, no one overheard me. This is not as simple as just liking someone. I talk They listen, and they hear me. We collaborate. I do say in frustration that I am doctored to death. That is true and undeniable. But there is no necessary contradiction here. It seems to me one has nothing to do with the other.
All of us are reliant on our neurologists. That is a fact of life. Like it or not, they become our link to faith in the future. Clergy may offer ethereal word pictures of hope, but action speaks more credibly than words. My neurologist is always present and accounted for, promising nothing but delivering a positive, upbeat message of hope. He is open-minded. That is a first. He is eager to try alternative therapies when he can grasp and relate to the science behind them.
For me, this comfort level feeds any notion of hope.
My internist becomes involved in every medical issue I face. He brings ideas and empathy and does the worrying for me. The gastroenterologist who has treated me for years guided me through two bouts of colon cancer and a myriad of GI comp-lications that followed me out of the operating rooms. I wish I could put a bolder period on the sentence, ending that siege.
In two books, I was critical of various doctors in my life, going back more than forty years. Times have changed, and many, I hope most, physicians have stepped down from the pedestal. Still, approval dos not come easy. I constantly learn that a comfort level with a doc is critical to faith in the future. It is difficult to dump a doctor when we have been under his or her care for a while. But it is too bad we seem to shop around for cars and consumer items with a more discerning eye and greater care than in the search for the perfect practitioner.
Such does not exist, of course. All of us are different. Our needs vary, and what we seek in a doc will differ. But the day of the passive patient should be long gone. How about the proactive patient? I believe we must be partners in our own care. It is not enough to say, cure me, and be done with it.


A Matter of Perspective

I have been thinking about how many of my days are spent with my physical difficulties crowding the front of my mind. Certainly a large chunk of my conscious thoughts is magnetically pulled into that space. I would guess that builds a self-absorption that could be a problem if not overridden by my everyday concerns for family and friends, career and community. Then along comes the horrific slaughter in Paris last week.
My good friend Charles Osgood opened Sunday Morning this past weekend with the straightforward statement, je suis Charlie, joining those all over the world saying in solidarity, I am Charlie Hebdo. For days, there was little. to think or talk about except the dangers of the world and fragility of life. And for more than a moment, there was something much larger to grab my mind.
The world is a perilous place. I fully believe none of us is safe. Anyone can be in the wrong place at the wrong time. I have not been feeling particularly sorry for myself this week. I am not obsessing on my frailties or even self-absorbed. I suppose I will get back to that soon enough, For this moment though, it seems there is something more universal to think about. That is both a burden and a welcome relief.


The Great Leveler

A piece in the Sunday Review in today’s New York Times deconstructs the condition that will overtake us all, not an illness but the inevitable process of ageing. Anne Karpf writes of the unyielding negative caste a youthful culture in America puts on those guilty of aging. “Ageism is simply prejudice against one’s future self,” Karpf observes. That attitude is shortsighted and ignores one inevitable fact of our mutual existence.
It is reminiscent of a 1984 speech, in which Gov. Richard Lamm of Colorado said elderly people who are terminally ill have a ”duty to die and get out of the way” instead of trying to prolong their lives by artificial means. I am hardly the first to suggest that America is cruel to the elderly among us. If we are fortunate enough to live to attain senior citizen status, we will inherit this delightful narrow-mindedness of the youngest generation in the history of the United States.
People like us need to be particularly sensitive to this rhetorical dead-end street. Chronic conditions are tied to Aging. By 2030, according to the CDC, the number of U.S. adults aged 65 or older will more than double to about 71 million. More than eighty percent of us will live with a chronic illness, fifty percent with two. Welcome to our future. Battling enemies within us is daunting enough. We have to take on the entire population.? We need to undergo one giant attitude check. Maybe a candidate for President will take on this issue. I doubt it.

Two in one day. I must be bored.


Hope Redux

I continue to wrestle with the idea of hope, still unable to pin it to the mat. I have viewed hope as a big idea and consulted the writings of thinkers I admire, those who take on the largest subjects of love and loss and everything between. I busy myself rejecting all I read, almost as a kneejerk reaction. I find the topic irritating, like earnest discussions about God.
Hope is not big at all. Hope is a small pocket of energy that becomes whatever each human carrying it around wants hope to be. Hope to me is a means, not an end. Hope is a spiritual tattoo, if you will. It is our creation, our mark on our own lives. Actually, hope is a simple idea, and I believe I am thinking it to death.
I have heard from a few others in the stem cell clinical trial at the Tisch Center. Like me, they believe they are seeing small signs of something good, producing twinges of hope. A twinge is good. A twinge is the most I expect right now. I have said numerous times that I do not expect to participate in the next Olympics. Maybe I will find stasis, a modest hope and a large victory.
Hope is fleeting, hard to grasp, difficult to hold close. I like poet Emily Dickinson’s view of hope, offered in the mid-nineteenth century:
Hope’ is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.


A Long Year Ends

This year has been tough for any American who cares to take stock of who and where we are. From Fallujah to Ferguson, we have seen death and defeat and in Syria, the unspeakable horror of human brutality. For all of us, healthy and sick, we cannot separate and stand apart from our world.
Yet many fight a war within, life and death battles waged within our bodies. We do battle with chronic illnesses, according to the CDC, “the leading causes of death and disability in the United States. ”These conditions, heart disease, stroke, some cancers, diabetes and obesity are among the most common health problems we face.
As of 2012, about half of all adults, 117 million of us, fight these chronic conditions that include MS. Everywhere we look, there is an enemy pointing a weapon at us, in the Middle East, Middle America and in our homes in the middle of the night, when disease so often strikes us down.
I, for one, cannot figure out where to direct my fears. We are Americans and a part of the world community. And we belong to the nation of the sick, a duel citizenship that confounds. I think we live with competing interests and priorities. I long have argued, in this space and elsewhere, to stop squandering resources on misguided missions far from home. Increase the NIH budget and invest in medical research. Shield us from the war that rages within.
At the same time, we cannot deny that enemies of America do threaten us here, with the specter of lone wolf operatives who can attack on our shores. I do believe we can cut unnecessary spending and protect ourselves on all fronts. The question of who will protect us from ourselves goes unanswered.
I do not mean to finish the year on a downer, though pretending that all is well does not seem smart. Maybe we should put the subject away for the holidays and give it a rest, knowing it will be patiently waiting for us in the new year. Happy holidays, everyone.


Learning to Write

There has been plenty of of talk in this space about eroding dexterity, the diminished use of hands and fingers. I am right handed, though in recent years, I have converted to the life of a southpaw. This has been sneaking up on me over the years. I eat with my left hand. I cannot hold a fork in my right. I brush my teeth and shave with the same. And so on. I am at a point where I cannot hold a pen. Why not learn to write with my left hand?
My father was left handed, and in those days, teachers forced his kind to write with their right hand. Of course for thousands of years, the Devil has been associated with the left hand and has been assumed to be left-handed. In the seventeenth century it was thought that the Devil baptized his followers with his left-hand. I will take my chances. Someone, please teach me to write with my left hand.
I went to see an occupational therapist. She wanted to begin by working on my right hand. No, I said. Forget my right hand. It has been on strike for a long time. She wanted to see for herself. I decided she would not see me again. My neurologist at the time was no help.
I am having a devil of a time with my right hand. My cane is in my left, and I cannot even carry a newspaper in my right. I am not complaining. I have to write fewer checks. Meredith has become adept at forging my signature. So far, we have not been prosecuted for forgery.
Has anyone out there in MS-vile learned to forsake the dominant hand and give the other a try? I enjoy taking Meredith to dinner. Just once, I would like to add up the charges and sign my own credit card receipt. All ideas are gratefully accepted.


Get Off it.

I have been thinking about our common reactions to being told what inspirations we are. That sentiment is thrown around enough that it seems to me it deserves scrutiny rather than instant dismissal. I believe we can agree there are no heroes, only survivors. I once told Elizabeth Edwards she did it with grace and dignity, both of which guided her on more than one front until her death. There are no metals or merit badges, however, and a life well lived is its own reward.
I believe many if not most people believe they are not emotionally equipped to handle a life of illness. They think they would fold and slink away. How many times have we all overheard someone say, I could not deal with that. I stifle the urge to say, what the hell do you know? You have never been tested. Maybe you are exponentially more resilient than you know.
People are scared to death of death, and a life of protracted illness cannot be far behind. We have grown used to our conditions. They have merged with our identities. We are who we are. Take it or leave it, but please cut the hero crap. All of us know the struggle to just get by. If we have families, we understand that children take cues from us. Getting it right sends an important message to young people.
When I meet someone living with serious sickness and he or she says something nice, I am puzzled. Invariably these people have their own stories and move forward with determination. They get it. We were at an apple farm and ran into a woman whose husband has MS. She was effusive. I sling words together. Big deal. I am married to someone on television. So? Our lives are nothing special. I promise you I do not know anything you do not know.
Who has time for the hero stuff? We have a lot of living to do. I only speak for myself when I silently say to someone, get a life.


More like it

L. writes, “Since you requested some rudeness and drama…” Hold on. That was not my point. I simply suggested we take the gloves off, cease our bent for correctness and tell our truths. Isn’t that what a blog is all about? I believe we are moving in that direction. Elizabeth writes, “I think that this is exactly the place to dump some frustrations with like minded people so that we aren’t always venting to those we care about. I like you all but you can read my post and shut down your computer.”
We are not monolithic. Not all of the serious sick are like-minded, moving in our chairs and on our walkers in a herd mentality. Have you ever seen a cow using a walking aid device? I think we respect each other to a fault, and we take great pains to avoid dancing on toes. That is not bad but can get in the way of important business. Openness is nurtured by unfettered reactions.
We should feel free to agree, reinforced by our willingness to disagree.


Boundaries and Brawls

A friend asked what I wanted the new blog to be when I was still in the birthing room eighteen months ago. I swallowed the real answer, which was, I don’t know. I do come out of television news, after all, the training ground for the triumph of form over substance. I did know what I wanted the blog to look like. Don’t bother me with questions of content. I want the blog to be a marketplace, I said. I had a picture of a food fight in my head.
No food is flying, but the more often I stand back, the more you write and respond to each other. Consider MB’s reference to subgroups among us. “Sympathy, empathy, compassion, pity—those of us who have disabilities are showered with all of these feelings from others at one time or another. Which one they offer us though is the difference between us being comfortable or uncomfortable.”
Then the wonderful observation offered by Aaron Ben-Zeév in Psychology Today. “Compassion involves willingness to become personally involved, while pity usually does not. Pity is more spectator-like than compassion.” To me, pity is superficial, if not patronizing. Your responses were wonderful, thoughtful and provocative.
All of you are adding depth to our subjects. I just throw out grenades and see where they land. That is the easy part. You catch them and toss them to each other. That is considerably harder. But we are too kind and considerate. A good brawl once in a while would be nice.