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.

31

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.

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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.

31

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.

32

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.

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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.”
Exactly.
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.

34

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.

80

Cutting Slack

Words of frustration rom Elizabeth: “I don’t thrive on pity. In fact I hate it, but can I ask a question? Why is it that people with MS are thrown into the “pathetic, sick people category? People with cancer or some other life threatening disease are seen as fighters, heroes, which they are. But while MS is life threatening, meaning it takes away your life right before your eyes, it’s not taken seriously except in our own parallel universe?”
Elizabeth, I am sorry you feel that way. I read great pain in your words, and I know the frustration we all feel, all the time. I do not agree, though. I believe our self-worth, self-esteem, self-confidence and self-everything else are assaulted everyday by an illness we cannot see or touch but has us by the throat. I believe what you are describing reflects how we see ourselves. That we project that sorry view onto others is no surprise.
I do it, too. I believe that when we feel down, we can be very hard on ourselves, as if it is our fault we are sick. That is like me blaming myself when I fall, which I do too much. We turn our hurt and anger inward. Of curse, I am a journalist, not a shrink. But I just do not think folks with other illnesses are seen as fighting the good fight while we are viewed as just pathetic.
I take so much from all of you, your strength and resolve. You are wonderful role models. Elizabeth, my friend, you are no different. You just do not like what you see in the mirror. Truth be told, I stopped looking in the mirror a long time ago, except when there is a sharp razor blade in my hand. I knew no good would come of the quick glance. We see what our mind’s eye instructs, and it is not always pretty. Elizabeth, I will bet you are. Please cut yourself some slack.

40

A Shot in the Dark

MB writes, “What is the craziest/most desperate shot in the dark thing we have done to hang onto our real selves?” Hmm. I guess my answer to that has been to try therapies that I knew would not help. That would include almost one year on Cytoxan, a brutal chemotherapy drug commonly used to battle lymphomas and various types of leukemia. When the doctor says, “let’s just see what happens,” you know you are shooting with your eyes closed.
Using drugs intended to treat relapsing MS to attack progressive forms of the disease are, by definition, desperate. Neurologists who do that are well intentioned and frequently cite anecdotal accounts of these drugs having some positive effect. I have traveled that road frequently in the past, never with positive results. My time on Tysabri proved the point. I started on the drug just before patients died and the FDA pulled it from the market. Tysabri returned with only a warning label. I declined the honor. That desperate I am not.
Well, MB, that is as crazy and desperate as I got. The stem cell trial seems neither of those. I will bury a baked potato under an elm tree at midnight when there is a full moon if you think it will help. Doesn’t seem crazy to me. And what about the rest of you?

77

Thanks

Your responses are great. I find hope and faith to be difficult subjects. I am reading everything and storing your stuff away. Please do not think I am ignoring you. I plan to bring other voices into this still phantom book. I hope we will talk. If you have a chance, Google William Faulkner’s speech accepting the 1949 Nobel Prize for literature. There are recordings. It is a wonderful affirmation of faith in the human spirit, what faith means to me.

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