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.


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?



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.


More on Hope

I am back to hope, a subject that is driving me crazy. I cannot decide if hope is very simple or crazy complicated. Maybe hope is merely what you wish for. Whether the end result is a sure thing or long shot, maybe hope is a way for a person to comfort himself or herself, waiting for an outcome. Why does hope have to be linked to faith? Can’t an atheist hope for something good to come to someone? I think hope can exist in a secular realm. Why not?
People of faith can be creatures of orthodoxy. Organized religion is orthodoxy and gives away faith. Faith is a wonderful quality, that is, if you have it and really believe. There is a tension between faith and reason. Read the great philosophers. Some believe the two do not contradict each other, that each has its proper place. I dis- agree. I believe faith and reason compete, and in that contest, faith wins every time because believers accept what their faith tells them, a priori. The verdict is in.
Fair enough. But if secular hope exists, why can’t I find it? It seems as if I, as a non-believer, have conceded hope to the faithful. Damn. I want a piece of the action, but I cannot get there, which must mean I do not really want it. Am I making any sense? The cynic in me thinks hope is only a way to harness that which no human can control. I do make myself crazy.
And I am in the early stages of a book, written about hope from a patient perspective. Good luck.


Money Madness

And while I am crying in my beer, let me ask something. How do you like handling money? I do not mean rolling over your IRAs or selling your stocks and bonds. I am talking about making sense of what is in your wallet or even worse, wadded into a sculpture of ones, fives or tens, or if we are big spenders, even twenties. They can be shoved into any pocket with no plan for retrieving them and sorting out the money mess.
Now take your numb fingers and add diminished vision to your lack of manual dexterity. This is going to be good. You are sitting on the commuter train, heading into the city and day dreaming mile after mile, listening to the hypnotic rhythm of steel wheels on track. As your head nods, the conductor approaches from behind, yelling fares, please.
You drop off the ceiling and quickly (for you) grope your pockets for bills. You fumble and bills fall to the floor. You have trouble convincing your fingers to pick them up. The conductor begins to look impatient. Is that a one or a five? you wonder. Sorry, you mutter. The conductor turns to the passenger across the aisle, hoping he will have better luck there. When he turns back toward you, you meekly open a fist clutching crumpled bills bathed in sweat. You ask him to take what you owe. Why am I using the pronoun, you. I mean, I.
There are a hundred variations on this tired theme. Getting on a bus in bad weather with passengers snaked outside in the rain as I fumble like a football player is one. Then there is the movie theater down a long corridor only one minute before the film starts and a very impatient patron directly behind me. Gosh, I love finding myself in that situation.
I could go on and on.
The obvious solution is to keep one denomination of currency, say ones, in one place, say the left pocket of my trousers. Fives could go on the right. Tens and twenties can sleep in my wallet. If anyone has fifties and hundreds, hire someone to carry your money. Now that I have created this highly sophisticated system for keeping money straight, may I add one thing? I will never bother. Not going to happen. Too much work. I am lucky to find pants with or without pockets when I dress in the morning.
I was on the usual train the other day. I recognized the conductor as he walked by, looking away and not even bothering to collect my fare.


Glass or Plastic?

I am a creature of habit in the morning. I head to the kitchen, usually in the dark, and I put on the television for news, which also leaves me in the dark. That is for another time. After some coffee, I go back upstairs to the computer. A large glass of water goes with me. Water is heavy. My right hand is useless. My cane is an extension of my left arm, so that hand is occupied. I have no choice. I have to use my right hand, as best I can. Often this means trouble is on the way. I have a pile of of broken glass to prove it.
This morning I opened the cabinet and reached for the safety of plastic. No one cries over spilt water. But I could not figure out how to grasp it. My hand kept reaching for glass. My arm was going in and out of the cabinet. The confusion felt strange. Finally, I picked up a glass and moved toward a water cooler in the kitchen pantry. I placed the empty glass under the spout but was confused about what to do next. I kept starting to put my finger on the button to dispense the water and then pulling it away. Finally it occurred to me to capture the damned water and pour it into plastic. How is that for clear-headed reasoning?
I awoke from my haze and went on my way. I take note of such unexplainable events, but I do not panic. Why? I am dispassionate, as if I was witnessing the actions of another. If I were paid by the hour for separating from reality and dwelling in denial, I would be getting g wealthier by the day. These experiences are increasing in frequency. I ought to be freaking out. I make my living with my mind, having given up on my body a long time ago. But when I am sitting at my desk at home, putting on my glasses when the phone rings because that seems to be the correct response, I am mildly amused.
I am too old to cry, so what choice do I have but to laugh? I know folks who routinely do cognitive testing. I have no reason to do that. I have no interest in tracking my cognitive deficits because there is noting I can do about them. In this house we laugh at every other form of adversity. Why should this be different? Maybe if I end up in a motorized chair, I will drive into a wall.


Dancing with Insecurity

I am tired of kvetching. I have already explained that word. Sometimes it is deafening. People cannot deal with others in wheelchairs. Or on walkers. Many of us have self-esteem issues. People around us just look through us. They don’t want to see us. And on and on. Enough. I am as guilty as anybody. And I say it is high time we recalibrated our thinking. Easier said than done.
Recently, I reread the early chapters of what probably is my favorite presidential biography, The Rise of Theodore Roosevelt, by Edmund Morris. I have been struck by what a sickly child TR was. Young Teddy was asthmatic, a sometimes fatal condition back then. He was near-sighted, and had to be home-schooled. His father wanted a rugged son and was disappointed in him.
One day he told his son, “Theodore you have the mind but you have not the body, and without the help of the body the mind cannot go as far as it should. I am giving you the tools, but it is up to you to make your body.”
I realize this is no longer the era of manly men, but maybe there is a lesson here. If Teddy’s resolve in the mid-nineteenth century came from his father, who he adored, it grew into personal strength, which he never seemed to stop feeling he had to prove to all around him.
I relate to that need, though I have come to believe that in the end, I never tire of proving it to myself.
That job never ends. I track it from my years in the news business to writing books. With each volume, I swear it is my last but need to prove to myself I can do it again. I feel as if the sick are always hyper-concerned about how others see us or become our toughest critics on how we see ourselves.
We do not seem to give ourselves a break. The road is tough enough. As with TR, we struggle with forces beyond our control. Life is hard, though it is made only harder by our obsessions. And what is the point? Who cares? But I know I am not about to change. Probably neither are you. Fighting our insecurities is a battle none of us needs or ultimately will win. As Aesop wrote so long ago, physician, heal thyself.



I stood around at a really boring party, and a good friend leaned in and said, “See that woman in the blue skirt? gesturing to someone all the way across the room with her back turned. “I think she’s coming on to me.” You have one hell of an imagination. I answered. That had to have happened close to thirty years ago.
This last post reminded me of that story only because readers shared their less preposterous reactions to all the nonverbal signals they get from strangers who are seeing them in wheelchairs. When I am stuck in a chair at an airport or large lobby, at a graduation or athletic event, I read the minds of everyone who glances at me or even fails to look my way.
Of course, I assume the worst, reading into blank stares or words never spoken. Of course I am projecting, playing out a script that reinforces my inability to handle my own vulnerability. I become hypersensitive and will demand, what did you mean by that of someone standing in silence. Of course, I overstate, but my point is simple.
Perhaps many of us tilt to one side from the weight of that damned chip living on a shoulder. I, for one, know I can be trigger-happy. Demons are never good for our mental health. One of numerous challenges for us is to keep our heads and senses of humor. When strangers spew venom and utter ugly thoughts, however that is different. It is not paranoia when the bastards really are out to get you.


My Broad Brush

It is refreshing to read the real life narrative of someone battling MS when the story runs counter to the negative stereotyping of society that can become fuel for bloggers. That would be reductionism to make a point and make it again and again. I have written if not beaten into the ground that we are surrounded by the uncaring, the so-called chronically healthy. These are folks who know no illnesses and demand to keep it that way.
In a recent essay in the Boston Globe, The Difference a Caring Colleague Made, attorney Carol Steinberg introduces readers to a senior partner who lent a hand and pulled her up and *into his practice. “He was a wonderful, kind person. He was a hero of the legal left. He never was concerned with making a lot of money,” Carol told me on the phone.
I asked how Rob-that is how she identified him- was different from other lawyers. That might be the answer right there. He did not live to make money. The man chose to practice with Carol alone when his practice broke up. He knew she had MS. That did not matter. “When it got difficult for me to carry to court the piles of paper I needed,” she wrote, “he brought them for me.” Carol went on to write about his incredible generosity of spirit.
“More than once, I’d fall in the middle of the street,” she wrote in the Globe. “Without alarm, ignoring my embarrassment, he would lift me up and we’d continue on.”
And Rob and Carol started trying cases together. When judges ignored Carol’s wheelchair and insisted she approach their podiums, Rob would be there in a flash. “Where did this come from? I asked. Carol took a deep breath. “I don’t know.” The woman seemed speechless. When Rob died in May, Carol was now alone. She still is not sure what her next move will be.
This is but a vignette, the nice story of a successful person able to see more than himself in the mirror. Maybe I paint with too broad a brush when I criticize an indifferent society. Maybe not. There are eight million stories in the naked city. This has been one.


Solid Stigma

We have shared thoughts and compared experiences about how the chronically healthy view those of us with obvious disability. This is about discomfort, the silent stares or averted eyes as a wheelchair or even a walker come around the corner and into view. But then there are our brothers and sisters, friends with a different disease, those who face pure discrimination each day.
Mental illness is just another chronic condition, plain and simple. It is no different from MS, lupus or Crohn’s Disease. Except diseases of the mind are dramatically different and have been demonized in books and films, even from the pulpit throughout our history. How the mentally ill are treated provides a useful frame of reference for dealing with the world around us and coping with our own conditions.
I wrote about Larry Fricks in Strong at the Broken Places. His adult life could have become a movie. Larry traveled in and out of psychiatric lockups and jails. He communicated directly with God, driving his car into his house to kill Satan. He swam across a lake to rescue children he believed were buried in a landfill and attempted to fly to South America to confront the major drug cartels.
And on and on. Larry lost a marriage and all his financial resources and descended to the depths of depression. He not only survived but found help and with extraordinary strength of will, pulled himself up and out of a deeper hole than I, for one, expect to ever know. Today, Larry is a rock of stability and leader in the mental health movement. But along the way, he has paid a price, both before and after recovery.
As with all of us, Larry has had to deal with the world around him. “How people view those of us with a mental illness may be worse than than the disease itself,” he told Today a few years ago. He called the common attitude, “the soft discrimination of low expectations.” Larry went on to say that people have assumed his brain is broken and he cannot be trusted again. “Look,” he told me, “the stigma is unbelievable,” adding, “people fight a psychiatric diagnosis because of what comes with it.”
So, I say to say to fellow soldiers fighting any neurodegenerative disease, think twice before feeling put upon or judged harshly by the world. I have to frequently say that to the guy in the mirror. We are but a piece of an extraordinary tapestry, not the center of the universe. We should look up and see all the stars in the sky.