Addendum

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.

22

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.

13

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.

31

A Broader Agenda

By my count, Journey Man rests on a foundation of about ninety-five posts. As we approach 100, which is approximately how I feel, it occurs to me this might be a good time to measure where we are and what we may have accomplished. I never liked and did not much read blogs. This is what I wrote about them in my first post last year.
Me, a blogger? Not in this lifetime, I have said. Blogs are self-indulgent, self-serving screeds, often irresponsible, frequently inaccurate and commonly incendiary. I think bloggers like to play with matches. Hmm. I might want to consider eating those words. My frame of reference had been blogs about politics, in which I still argue there is a sameness and a numbing tone. I have no plans to chew on those thoughts at dinner tonight.
Does Journey Man gingerly step into the quicksand of self-indulgence? Enough about me, how do you think I am doing? I hope not. It is true I write about myself, but I continue to argue that while illnesses are different, the coping issues that come in the same package are remarkably similar. I have wanted to build a marketplace in which give and take is the currency of the realm. So many of you own this blog.
My disappointment is that the blog focuses on MS, even as I have hoped to write about other chronic conditions. Though the coping challenges are similar, people may not tune in if they believe you are talking to someone else. My second book, Strong at the Broken Places, told the stories of six individuals living with different problems. From ALS to non-Hodgkin’s lymphoma, Crohn’s Disease to muscular dystrophy, individuals revealed themselves.
That book included my friend, Larry Fricks, who battles bipolar disorder. Mental illness is an under explored subject. My point is, there is a broader agenda to be addressed than we have tackled. My question is whether that idea appeals to everyone. Should we widen the lens or just sharpen our focus? My answer is that I would like to stay on MS for the most part but occasionally wander into other pastures, especially when there are psychological or practical issues that apply to all.
So what do you think?

61

Life from a Sitting Position

We have just about done this subject to death. Lots of attitudes and ap[p[roaches. Your responses were wonderful. I am happy to say I am just as ambivalent and confused as I was when this subject was raised. I remembered a column I wrote for AARP a few years ago about two individuals who go through life in a sitting position and deal with it. Here are excerpts.
Bob Schmonsees was standing on a ski slope in Pennsylvania almost thirty years ago when another skier broadsided him, sending Bob into a steel lift. He says he knew right away. “I was not able to move,” he says quite simply. Did you regard the chair as a prison, I wanted to know.
“The situation was the prison, the chair an enabling factor,” Bob replied after a moment’s thought. Seven years after the accident, Bob realized he had been operating in denial and endured a short bout with depression. Then he got rolling again and proved he could still have a life. “I became the top ranked player over forty in wheelchair tennis.” Was that liberating? “Yes, and gratifying.”
Bob continued an avid golfer and even ventured back onto the ski slopes again, though later he realized skiing strained his shoulders. It is all attitude, isn’t it? Did you have to work at it? “No. It’s in my nature.” And your DNA. “Right.” With age comes pain. Bob gave up tennis and deals with the intestinal problems that go with sitting for so long. “I have a good life,” he says.
Then am I a wimp as I look down the road at a chair? “Absolutely not,” came the quick reply. “You are in a bad situation. You have your vulnerabilities.” Bob paused. “This would be traumatic change. There will be a loss of independence. Look,” he continued,” people make using a wheelchair worse than is, but it ain’t no fun.”
This may not happen. In my gut, I know it will. My ability to ambulate will be gone. A walker is next. The rest will follow. “Everybody is afraid. For the average person looking around and seeing people like us, the sight may cause fear, but it is not inevitable. People like us are different.”
When Allen Rucker went down for the count in Los Angeles, transferse myelitis, which some people call MS of the spine, another autoimmune disease, struck, and in ninety minutes he lay paralyzed in a hospital bed. “It was frightening.” Soon enough he was introduced to his new wheelchair, the mode of transportation he would use for the rest of his life.
“I always considered the wheelchair liberating. I never resented the chair. “My favorite recreation was to wait until 3:00 in the morning and tool around Cedar Sinai Hospital looking at the incredible art on the walls.” This was Allen’s private proving ground, his way of easing into his new life.
“Richard, with you there will be nothing sudden about this. You already are preparing yourself for what might be.” Allen paused for emphasis. “You are on this gradual course. You don’t know it, but you will find it liberating. There is true mobility in a wheel chair. It’s not a horrible thing.”
Right. “You should lighten up,” he laughed. “You may find yourself more mobile. There always will be the stigma. People will still think you are a pathetic person. There will be a sense of pity, a sort of death by kindness. You learn to ignore it.” Hard to imagine. This is a pointless game game. What will be will be. I have better things to do than play out worst-case scenarios.
And yet the wheel chair is so threatening, maybe the final public signal of unbeatable weakness and irrevocable admission that one has lost the war. I have stood up to this illness for my entire adult life and lived my way. I cannot make my peace with the finality of sitting down.

23

Staying on my Feet

So many of you write quite comfortably about your transition from the easy life on your legs to mechanically assisted mobility, electric wheelchairs, Segways or whatever. I wonder if these moves are as emotionally seamless as they read or a tough turn in the road. Maybe you had secret nervous breakdowns, though I doubt it. I make no secret of my own hang-ups. I have written about the phantom wheelchair I see parked in a dusty corner of my mind.
My father and his mother completed their MS journeys in chairs. They accepted mechanical assistance and never seemed to fight it. Obviously, I have taken a different tact. The fact that I routinely set out on New York City expeditions on foot that end up causing me pain and suffering has taught me little. I imagine getting into trouble and even putting myself into danger the same way again. Why?
I believe there was a time I saw staying on my feet as a virtue. I was fighting and winning against a foe I know will not be vanquished. I understand the emotional payoff for remaining standing for as long as we can. Passing that point without seeing it is a trap. There are no checkered flags stuck into the soft earth as markers. Each person’s line is in a different place. Some of us are smart enough to see the border and know that change is in the air.
Or should be.
My vision is flawed, and my eyes are closed, anyway. I do not see what I want to avoid confronting. It is not that I need some device that moves to sit on right now. I do recognize my time may be rapidly approaching, however, and I am unprepared. I want to deconstruct this phobia of mine.
Maybe I cannot handle reality. Perhaps I should grow up and stop projecting my fears onto others. Maybe it is time to see that whenever I make a change, the sun will come up the next morning. My family still will be around me. I will continue to write and fight the good fight. And I will be me.
Nah. Too mature.

61

Damn the Torpedoes

Many of us have written to each other about falling, usually focusing on the indignity of involuntary human flight. It is embarrassing to spread our wings on a crowded street and provide free lunchtime entertainment for passers by. I think most of us agree that we never seem to get used to the spectacle.
There are other dimensions to consider when we write or talk about those involuntary spills. Of greater concern than embarrassment to me is my pattern of hurting myself with those unwelcome events. The fallout here is more lasting and significantly more damaging than any run of the mill red face.
I was alone in my carpeted study when my legs began that tortured process of giving out. The script already was written. I searched in vain for something to grab as I began my slow descent. When a halfway healthy type falls, if that ever happens, he or she can move legs to adjust position and with any luck, nothing will come of the fall.
I and presumably many others with MS and many other degenerative illnesses cannot move our legs in those precious seconds. When I went down days ago, I fell on myself at an odd and unfortunate angle. The pain in my right knee was fierce. Adding insult to injury, I was slow to straighten out the pretzel. I knew I had damaged my knee.
As I moved slightly sideways yesterday, I went down hard again. Now I am afraid to move. I am seeing an orthopedist Monday. He already has taken apart the same knee once. I only can imagine what he is going to tell me. So I walk carefully at my octogenarian best and slowly, try not to move precipitously to the left or right. Does this ever end?
I am not crying in my beer. I do not even drink beer. Excessive alcohol consumption just adds to our miseries. It seems to me I have two choices. Cut down on pushing myself physically and settle for a more sedentary existence Or I can keep going, knowing a damn the torpedoes attitude probably means more visits to the floor. Screw it. I think I will opt for the latter.

38

Be Warned

I am interested hearing and actually listening to more voices than my own for the book I have begun. A major theme of the book is going to be hope, always from a patient perspective. My friend Jerome Groopman wrote about the need for physicians to foster hope in The Anatomy of Hope. Great book. Hope is a complex subject, one that can be approached from varying angles.
Some see the word as overused and meaningless. What do you think? What is the relationship between hope and faith. I am particularly interested in that question. Can an atheist know hope? Does hope by definition have to exist in a religious framework? I believe there should be secular hope. Do you agree?
I want to know how real and important hope is. Do you believe hope is real? I really do not know how often people think about these questions. On the other hand, I have to think anyone reading this blog knows sickness. Maybe you are ill or a family member or friend lives with an illness.
I am interested in more than MS. In the past many months, I have heard from people around the world dealing with a range of conditions. Please think and talk to family and friends about it. And please do not bother to send me stories, thoughts, opinions or whatever. Do not waste your time. I am not there yet. It will be a while. I am planting the thought with you now and just hoping it will grow.

28

Truth be Told

A quick thought. I have received many generous responses to the last post about my new stem cell infusion. It happened today. Many wished me well and the strength to endure the pain. I read the word, bravery, in numerous responses. I have to be honest here, maybe even return the medals and merit badges. If you are going to write a blog, you should at least occasionally tell the truth.
There was no pain and little bravery. My neurologist knew precisely what he was doing. It pains me to be nice to any neurologist, but he is good. A pinch of the needle, and the local anesthetic did its work. After that, I felt almost nothing. There s a mythology about certain procedures. Popular belief is that they are draconian, that Nazi doctors probably perfected them in the 1940s. I like that, because I am a professional wimp and perfectly prepared to dine out on self-serving misperception.
Alas, I cannot. My ninety-two year old mother would not approve. I will say, however, there was one element of the stem cell infusion that did come dangerously close to torture. The actual infusion process took, I don’t know, maybe fifteen minutes. Butt I was forced to lay on an examining table for close to three hours and take in two I V antibiotics that were part of the protocol. That had to be in violation of the Geneva Conventions.
Nothing is easy. Who ever said fighting MS would be easy?

24

Truth be Told

A quick thought. I have received many generous responses to the last post about my new stem cell infusion. It happened today. Many wished me well and the strength to endure the pain. I read the word, bravery, in numerous responses. I have to be honest here, maybe even return the medals and merit badges. If you are going to write a blog, you should at least occasionally tell the truth.
There was no pain and little bravery. My neurologist knew precisely what he was doing. It hurts to be nice to any neurologist, but he is good. A pinch of the needle, and the local anesthetic did its work. After that, I felt almost nothing. There s a mythology about certain procedures. Popular belief is that they are draconian, that Nazi doctors perfected them in the 1940s. I like that, because I am a professional wimp perfectly prepared to dine out on self-serving misperceptions.
Alas, I cannot. My ninety-two year old mother would not approve. I will say, however, there was one element of the stem cell infusion that did come pretty close to torture. The actual infusion process took, I don’t know, maybe fifteen minutes. Butt I was forces to lay on an examining table for close to three hours and take in two I V antibiotics that were part of the protocol. That had to be in violation of the Geneva Conventions.
Nothing is easy. Who ever said fighting MS would be easy?

1