Happy Independence Day

July 4th is fast approaching. And so we celebrate our independence from a ruthless, even heartless tyrant who once controlled our lives and defined what we could be. There was a generational dimension to the conflict. Young men and women called themselves Americans and fought to the death to be free. Yet many if not most of us do not know true independence because an enemy within is holding us hostage. Devastating illness.
According to the CDC, just about half of all adults, 117 million of us, live with one or more chronic conditions. One of four adults has two or more of these illnesses. These are the leading Causes of death and disability in the United States. Heart disease, stroke, cancer, diabetes, obesity, and arthritis are among the most common and costly of all chronic health problems.
And Friday, we celebrate our freedom?
I am not independent. I am doctored to death. I need others to assist me in life’s little tasks, to take me where I need to go or pick me up off the floor. We are not taking care of ourselves. The President is sending hundreds of advisors to Iraq, and then hundreds more in his variation on an old theme. Vietnamization. We never learn.
What we all must learn is that baby boomers are the bulge in the population. As we age, the number of chronic conditions we will face increases proportionally. We are letting ourselves down as we head into our so-called golden years.
So run Old Glory up the flagpole. Enjoy your picnic and set off your fire works. Nothing wrong with that. But bare in mind, you are not independent. You are heavily reliant on others and on a government capable of finding cures but unable to find the money to do it. Check out the projections for virtually every disease known to us. Get scared, and ask yourself who is going to answer the door when your bell rings in the dead of night.

39

Superman

I slipped on the banana peel and landed with my head in an extremely odd place. It was difficult to see, ironic because my detour into darkness caused the mishap in the first place. The maneuver did not feel right, and I am struggling to find my way back into the light. I think of myself as generally upbeat. Please chock this up to a bad week.
Actually, once you decide to illuminate a situation, the rest takes care of itself. Forays into despair can be your garden-variety self-indulgence. I tell myself that bathing in self-pity can be excused if you stand up and climb out of the tub frequently enough. Sounds a lot like letting yourself off the hook to me. I never have felt comfortable as a role model because I make it up as I go along and certainly do not hold the keys to the kingdom.
I wear vulnerability self-consciously. “You don’t tug on Superman’s cape, Jim Croce warned. And I do not cook with kryptonite. My superman complex is well controlled. My foibles and flaws are on display everyday. No reservation needed.

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Welcome to Sisyphusville

The boys of summer are doing their thing. This is the season when thoughts turn to our national pastime. Not in this house. I have been thinking about Camus’ Myth of Sisyphus since my vision once again headed south and walking north toward home became such a hike. Maybe this just tells you how weird I really am. The famous essay introduces a philosophy of the absurd. Why would a man of many illnesses see the world as absurd?
A poor guy is condemned to push a boulder up a mountain and watches in horror as the rock slides down the incline again. The next day, he gets to do it again. This becomes perpetual motion. Sounds like a familiar pattern to me. Every time I visit the neurologist, I am pushing that boulder up to the fourth floor. All I can think is, look out below.
Camus wrote of man’s futile search for meaning. I am with him on this one. What does an ugly illness add to the debate? Meaning? I do not think so. The man seeks clarity in the face of an unintelligible world. Clarity. Right. The author compares the absurdity of life to the situation of Sisyphus, a figure who won a larger role in Greek mythology than he probably bargained for.
I feel as if I have been cast as Sisyphus, and I am not even making minimum. I will bet you do, too. I asked my friend Merriam Webster to clarify absurdism for me. He told me it is “a philosophy based on the belief that the universe is irrational and meaningless and that the search for order brings the individual into conflict with the universe. Well, good morning.
I made an existential turn here. I have decided to stop caring so much, as if something good will grow from this. Life is absurd, not to mention arbitrary. Nothing makes sense. Due process in real life does not exist. I am not going to stop going through the motions. Burt do not ask me to believe. My expectation level has been shattered. I am lowering the bar. It is my way of holding onto sanity. I can do this. I am being true to myself. I gave up Santa Clause and survived. I know the faith community will take issue with this. I respect them. That is their right. But I have been on the roller coaster for too long, and I am feeling queasy.

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Word Power

I found an old newspaper under my desk and quicly looked over the front page. Clinton White House Chief of Staff Rahm Emanuel, never known for tact, characterized liberal activists as retarded, with a short expletive attached. The word retarded is unacceptable no matter how it is used. It hurts others and cheapens us.
What no one will admit is that we all use some variation of that term in safe circles, where friends excuse each other’s bad taste and simply laugh it off. Who has not used the term, retard, never to be quoted or at least attributed. The most sensitive among us can wink and break ranks with the righteous to say things the wrong way.
The power of language to define or wound can not be denied. All of us know expressions that demean, based on race and gender or mental health. I once heard a surly neighbor call my father a cripple. Unkind language keeps narrow-minded attitudes alive. Most of us agree there are haters out there. Old language feeds old prejudices. In our society, one group or another always draws the short straw.Too ofen, it is the sick, maybe you and me.
“Words are loaded pistols,” Jean-paul Sarte wrote. Of course time passes, and language standards change. What is acceptable at one point in history can offend and leave people in disbelief later. Words also reveal public prejudice toward sickness.
New York City’s respected Hospital for Special Surgery used to be called the Hospital for the Ruptured and Crippled. Georgia’s first state psychiatric facility was the Georgia Lunatic Asylum. You could not make those up. They are particularly egregious examples of ignorance disguised as acceptable language.
The word crippled no longer is tolerated. The Newington Home for Crippled children in Connecticut was changed more than a generation ago. Crippled always seemed neuteral to me as I grew up. It seems harsh now. Maybe any word Charles Dickens used is automatically off-limits. Tiny Tim needs a name change fast. Ask a guy on a cane about words. Walk a mile in his prescription shoes.

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Idea

Why don’t you post responses in bold? Won’t that solve the problem? Of course I am just coming off three days of IV steroids. I am likely to think anything is a good idea.

34

Frustration Redux

Houston, we have a problem.

I am having big trouble reading your blog responses.   As many of you know, part of the optic neuritis assault is a loss of contrast.  Words seem to fade off the page.  I have been through this many times but never get used to it.   Usually, I regain some sight but never make it back to the starting line. Some of your messages are long.  Very long.  There is no criticism here.  This is frustrating because I appreciate how much you put into what you write and how much you care.

.  When Christopher and Matt seemed to be talking past each other about emerging technologies, I kept attempting to reread what I could only half see.  I brought nothing to the conversation.  I find myself longing for a short response to a blog, something like, that sucks.  I could pick that up pretty easily.  I do not want to discourage full responses.    All of you can read them, understand and respond to each other.  That is so important to me.

Then there is the usual anger, which rears its ugly head in these situations.  Many carry that around on our backs.  MB writes, “I’m angry, resentful, and non-accepting, too.” I’ll see you and raise you.  I am angry, resentful, non-accepting and very pessimistic.  This enemy keeps advancing over the horizon like foot soldiers in old wars.   Reminds me of WWII movies.  But please keep writing.  If I cannot make it through your thoughts and ideas, I will wait and see the movie.

 

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The Marathon

We have passed the seventy-blog marker on our marathon.  The good news is we are making progress.  The bad news, there is no finish line.  There is no shortage of coping issues that hold hands with chronic diseases.  I imagine we never will run out of stuff to discuss.

I had thought I would lose interest after three or four.  I tend to have the attention span of a five year old.  After all, I did work in television for twenty-five years.   Our topics are compelling and all of you very interesting.  Opinionated is another word that comes to mind.  The magnetic pull of the dialogue has been irresistible.  I am hooked.

I am not sure my views are worth a damn. Yours are.  Gawd, I hate being nice to people.  So many of you have to deal with terrible if not terrifying challenges that seem so much more daunting than mine.  There is no hierarchy of pain, I repeatedly argue.  You are living your life and fighting your own battles.  That is your reality.  Still…

You do it with such grace and humor.  You must be an inspiration to family and friends.  And there is a palpable calm to your words.  You know what you are up against and meet your challenges in an understated manner.  No moaning and groaning.  I generally hobble outdoors at night and rail at the trees.  They are polite enough to say nothing, although they do not appear particularly impressed.

You are great people.

Your responses have been thoughtful.  I think dignity is its own reward.  It breeds self-respect.  Do you ever get used to the whole thing?  I cannot make that leap.  Every day I awaken to the same body parts that do not work.  They were pretty useless yesterday, and I expect the same tomorrow.   Yet I am surprised when my feet hit the floor and my body begins the daily battle with itself.  I am angry.  You do not seem to go there.

Okay.  Where do I sign up for the course?

 

 

Follow RMC on Twitter  at rmcjourneyman

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A New Look

I saw my neurologist the other day after physical therapy.  He glanced at my baggy, slightly torn jeans and asked pointedly, “What kind of look is this?  Are you a hippie or something?”  I chose not to dignify the question, though I do enjoy provoking him.  The doc does not know the real me.  I will share a well kept secret.  I am a fashion forward kind of guy.  Not everyone will buy that.  Meredith will scoff.  But I suspect I will make the cover of Women’s Wear Daily or more appropriately, Gentleman’s Quarterly soon.  Actually, a colleague once suggested that Emmett Kelly was my tailor.

And now the final touch, the stuff of runway raves.  My pulmonologist prescribed compression socks to deal with leg veins weakened by the blood clot.  Compression socks, they are called.  Or maybe stockings.  I don’t know.  Then he gave me a prescription.  A prescription?  For fashionable footwear?    Damn.  I have been buying natty socks for years.  No one ever asked for script.  Whatever.  These new socks will go nicely with my bowling shoes.  This colorful legwear makes me want to play shuffleboard with the other octogenarians in the neighborhood.

Yes.  I understand how functional these tight socks are.  No letters from doctors, please.  I just like that they are colorful.  I am going for black.  By reputation, they are almost impossible to get on.  With a weakened right hand, it will be a challenge.  I hesitate to ask Meredith for help.  She is going to be jealous  of my new look.  I will get those socks on if I have to use pliers and leave them on all the time.

We do what we have to.  We all know that.  Maybe I will wear them over my ears to support better hearing.

15

Losing Self-esteem

The assault on self-esteem comes in small skirmishes that add up.  When Lily was in high school, we dropped her at JFK for a trip through Europe.  She and I went into the terminal while Meredith parked the car.  “You wait right here while I get my ticket,” she instructed firmly as she dashed off to do battle with a ticketing machine.  Yes, Ma’am, I silently said.  Shouldn’t it be the other way around?  I had the uneasy feeling that I was with my sitter, and she was instructing me to behave myself.  My daughter was eighteen.  I was legally blind.  It did not feel right.  The memory stays with me.

This was not the first time I felt my physical limitations undercut my image of myself as a strong parent.  Self-esteem suffers when a father feels the loss of parental authority.  Humiliation can quickly follow.  I have written before about the pain of feeling like a child.  This is nobody’s fault, only a predictable consequence of living with a disease that can make a strong man weak.

A flight home from San Francisco had made the same painful point. I’ll meet you at the plane, I told her, hobbling off to buy a newspaper.  I began my walk toward the gate,  looking for shops I had focused on earlier to mark the trail.  My lousy vision is as problematic as my limited ability to walk.  I eyed a fork in the concourse ahead that had escaped notice coming from the other direction.  It seemed to pop up out of nowhere.  Now I had to guess which road to take.

I walked what for me was a fair distance.  My legs began to shake. I began to feel tired and recognized nothing.  I did not know where I was and began to sense a familiar anger rising in my head.  A slight panic mixed with strong self-recriminations.  How could I have let this happen?

My cell phone rang.  “Where are you?” Meredith asked, concern in her voice.  I chose to hear that as impatience.  I don’t know where the hell I am, I half-shouted into the phone.  “Tell me anything you see,” she instructed softly.  Stay there, she told me after I identified a nearby shop.  “I’ll find you.”  The familiar feeling of helpless dependence washed over me.  I felt so small.  Don’t let me out of your sight without a babysitter, I instructed bitterly.

Once again, I had been reduced to a childlike adult.  On the long flight home, I sat wondering why needing the help of another feels so emasculating to me, as if I am less of a man when these things happen.  I have to somehow force myself to remember that I do many things well.  I function efficiently and effectively, and that is what is important.

As my condition worsens and my body takes leave of me, I need to hang onto all I have accomplished.  I was not merely a passenger. I have to stop allowing my worst fears to define me in my own head.   I know I am deeply fearful of losing cherished independence.  Control left long ago.  Friends and acquaintances tell me that when they look at me, they only see my strengths.  I seem to be the only person who looks at a cripple when I pass a mirror.  Some memories die hard.

 

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