All in our Heads

We have sounded a group lament over shared physical limitations. That is a powerful and highly emotional subject to visit. And maybe we are not just visiting. Many of us seem to live there. We cannot let go of what was and is no more. Absent any context, I want to share the words of an old and wise friend. The thought was offered years ago in a simple declarative sentence at a time of loss.
“Who you are is in your head.”
Think about it. Our identities are an amalgam of our thoughts, beliefs and values. The ability to ride a bicycle, to jog on a path and climb two steps at a time only are side shows. We focus on life’s small successes and make more of them then than is warranted. I have not driven a car in many decades, in fact, only was able to drive for twelve years. It took twice the time to adjust to that particular limitation. Sometimes I believe that task never will be completed.
Why?
Is turning a steering wheel and pushing a pedal to the metal an accomplishment that matters? Do I envision a headstone that reads, He Drove a Car? Navigating the highways we travel on our long journeys strikes me as having more meaning. I, for one, have made a habit of mixing up what matters with what is symbolic and, at the same time, highly trivial. Maybe we think with our emotions too much.

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Power of a Good Life

MS along with other illnesses is a big mind game. I have written that thought, uttered those sentiments countless times. Patients in wheelchairs, folks on walkers or hobbling along on canes might choose to differ. Allow me to deconstruct the thought; understanding you never should take me too literally.
Clearly, the war with our physical selves rages. There is no denying that. The physiological underpinnings of multiple sclerosis become all too well understood as we fight to remain on our feet. But standing tall and maintaining equilibrium are long-term objectives in the psychological wars we must survive.
For those of us who know progressive illness, we live with limited options for therapy. For some, that really means, no options at all. Cell therapy is a great experiment. We sit atop a restless horse, jumpy and ready for the race. The track is long. So expectations must be tempered.
I believe that leaves us to contemplate the battles fought “in that exotic place north of the neck,” if I may be brash enough to quote myself. We are in control of attitude and demeanor. No physiological force, no disease process that cannot be stopped controls us. “When we are no longer able to change a situation, we are challenged to change ourselves,” psychiatrist Viktor E. Frankkl wrote of his years in Nazi death camps.
“Everything can be taken… but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” An extreme analogy, perhaps. But the truth of those words applies to surviving the struggle with disease, its own brand of torture.
Maybe we can win, even as we are losing. We are not going to beat the disease. Pollyanna is a stranger to me. I do believe how we choose to comport ourselves as we relate to loved ones and an indifferent world speak loudly about who we are. There is a measure of satisfaction to be taken from living well, even when life is unkind to us.

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Wake Me for Bed

I am tired of the fatigue.
I just finished complaining about sleeplessness, and now I am kvetching about the many moments when I can barely keep my eyes open each day. It I s no wonder I am getting crazy. Waking up exhausted, after a long sleep or none, makes me wonder why I even bother. Just imagine how productive we could be if we just kept going instead of pausing to rest.
The NMSS says that 80 percent of MS patients live with chronic fatigue. Gawd, it is debilitating. I cannot nap. I do not possess that skill. But stick me in front of a computer, and my first trip into outer space comes before lunch. I am legally blind, and I think I picked the wrong line of work. Squinting endlessly at a computer screen is a soporific. I am certain the same could be said for a thousand other jobs. I have read that constant fatigue is the single most common complaint with MS. I believe it also drives people from the workforce.
Anybody ever try popping Provigil? The FDA approved the drug to treat narcolepsy and help workers dealing with shift changes. The drug has been widely prescribed for MS induced fatigue. I found Provigil to be an expensive placebo, though others say it works for them. Whatever gets you through the day.
I see no solution on this one. I pretty much have stopped complaining. If one of the secrets to a reasonably happy life is to choose your battles carefully, I have enough larger issues. Some things just are what they are. If an occasional really good sleep does not fuel life the next day, then I say, do not waste time and psychic energy wringing hands. Live with it.
I just need to learn a different skill that does not place such a strain my eyes. How about operating heavy machinery? That may be the ticket.

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Still Sleepless in the Suburbs

More than a year ago, I posted an essay titled Sleepless in the Suburbs, whining about my prized ability to fall asleep and the sad inability to remain unconscious for any duration approximating a good night’s sleep. “Sometime between 2:30 and 3:30 on these dark and frigid mornings, my marvelous journey into the night comes to an abrupt halt. The alarm might be the clarion call to the bathroom or nothing at all. But I am awake. When that dreaded status registers, my mind jumpstarts itself, and that unquiet mind begins the race.”
Little has changed, except that the expectation of levitating into an unwelcome, upright position at an awful hour has been written into the software in my head. I expect to wake up. I am chagrined to admit that I have become predictable. Perish the thought. I resisted sleep medication until my nerves were so frayed I was chewing the blanket. Now when I awaken and cannot get back to sleep, I feel slightly punch drunk. This has to stop. Right.
Frequently I am told that sleep deprivation and MS fit neatly together. Aging must have something to do with it. Tossing and turning like a machine probably correlates to personal craziness. Sane souls do not write books, which can keep the mind racing. There is no known cure for the beasties that come out at night and dance in your head.
We have debated whether acceptance of an illness amounts to surrender. I am waving a white flag on sleep deprivation, as unhealthy as it is. I do not know what else to do. . This just may be who I am, and I am too tired to fight. Unless you possess some elixir that will swoon me to sleep, don’t bother. It is too late for your great aunt’s guaranteed sleep solution. I so want to dissolve in a snore.

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A Self-inflicted Wound

This all started when I saw a computer warning that after March, Google is planning to sell info about what web sites we browse to interested companies. That, of course, is an invasion of privacy, but in this age of the internet, what do these powerful companies care about that? The warning – I do not remember where it came from – came with the option to clear our browser histories.
I have nothing to hide, but I do not want these electronic assholes snooping around what sites I choose to visit. And I really dread the prospect of endless ads for the mountain of medical stuff available for purchase. I listen to endless You Tube music, 60’s to opera, and I only can imagine what goes with that. So I did the right thing. Right? Wrong.
As a card carrying Luddite, I did not realize that doing away with my history meant being unable to get into my email, post blogs, and perform life’s little tasks when they require the computer to remember who I am. The hard lesson here is simple: never do anything on principle.
This is my long-winded way of saying that since I seem not +to exist, Journey Man does not know who I am. That’s nice. How quickly we forget. When I attempt to reply to a comment, I receive a demand for my name and email address and website information. I do not even know what that means. Please know I am not ignoring you. I am on strike, waiting for Brooke, Meredith’s colleague who regularly applies triage to my computer hemorrhages, to do it again.
So continue to talk amongst yourselves. You do well without me. This gives me a breather to wonder why I am writing another book with all the pain that is part of the package.

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To Lose One’s Mind

When MS setbacks suddenly appear, many of us know the churning stomach and weary whisper that hoarsely says, here we go again. We buckle our emotional seatbelts and prepare for the rough ride. On some basic level, though, a calmness comes quickly. We are inured to setbacks, at least until we are not. For me, calm crumbles as I realize that cognitive impairment is leading the charge and coming right at me.
I have grown used to reaching for words, but now, even after the words are captured, they do not come out right. What I hear is not necessarily what I am trying to say. It is startling, as if I am listening to someone else. At my self-important best, I fancy my self a wordsmith. Meredith no doubt would substitute other words. Imagine how threatening this new adventure is. I am told a medication may be causing this roadblock, and it is easily reversible. We will see. Patience. I don’t think so.
I have grown used to forgetfulness, occasional conceptual mishaps like putting on glasses in response to a ringing phone. Nobody else notices my verbal missteps, but they scream at me. Damn. This is not where I want to go, though Kurt Vonnegut wrote that, ““Bizarre travel plans are dancing lessons from God.” Sometimes the chuckle does not come easily or at all.
George H.W. Bush’s Vice President, Dan Quayle, told us “What a waste it is to lose one’s mind. Or not to have a mind is being very wasteful. How true that is.” The statement reinforced that truth by substituting the word, lose, for waste, not to mention speaking incomprehensibly. There is nothing funny at work here. A loss of brainpower is catastrophic for anyone and is my worst -case scenario with multiple sclerosis.
You know, MS is not as much fun as it used to be.

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Winter Doldrums

For me, this is the dreariest time of year. Freezing temperatures and frequently bleak skies cast a pall over everyday life. Any sense of optimism suffers. I just do not feel upbeat, which, perhaps, is understated. I long have felt that attitude is not money in the bank. It turns on a dime and can lose legs with deliberate speed. In my day-to-day, even hour-to-hour existence, freezing rain is an emotional ambush. Such is the fragility of positive thinking.
If this sounds a little goofy, it speaks to what a mind game I (we?) play, coping with serious sickness and keeping our heads above the icy water. I feel as if I make it up as I go forth. Life is only improve theater. No script. No control. For all of us, the stakes are high. State of mind is a player in our lives. I do not suggest that a positive outlook enhances neurotransmission. Only God can make a tree. Supposedly. But openness to the possibility of improved health can bring warmth at night.
“Winter lies too long…” Willa Cather wrote near the turn of the 20th century, “and hangs on until it is stale and shabby, old and sullen.” Yup. That about sums it up. Spring will come soon enough. Skies will grow bright and light will stream into my psyche. I am a guarded optimist by nature, though some may not believe that. No force in the universe is out to get me, and I am competitive enough to want to win.

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Addendum

In FY2015, the National MS Society will be spending $52.3 million on research, according to a friend at the NMSS. The NIH is projecting that it will spend about $103 million in the U.S. A recent analysis by the Multiple Sclerosis International Federation (MSIF) indicates that in the U.S. we provide about 50% of the total spent on MS research by MS Societies internationally, so we can extrapolate that between the US, other MS Societies, and NIH – $200 million US dollars is devoted to MS research annually. What pharmaceuticals and other private companies spend probably correlates to how much they can gauge out of patients, not to put too fine a point on it.
The NMSS has its critics, but my point is that MS is hardly an orphan disease. And they do exist. I, for one, am glad I don’t battle one of more than 7,000 rare disease, according to one online source. How about Emery-Dreifuss muscular dystrophy X-linked or Emphysema congenital lobar, Empty sella syndrome,
Enamel hypoplasia cataract hydrocephaly and Encephalitis lethargica?
Don’t forget Encephalocele. I am not making fun of these conditions. They are real and no doubt inflict very real pain and suffering. But good luck going door to door for dollars.
MS is the devil we know and is taken seriously in the world. Of course cancer is ahead of us in the pecking order. I can live with that.

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Perspective

It is said that multiple sclerosis ranks low in the hierarchy of suffering. Fair enough. Many who battle MS probably take issue with that status. But most of us do not have to endure real pain, one measure of suffering. Once I told a neurologist that I have been smoking weed forever and keep hearing it is good for treating the disease. How? I asked. “Pain,” he answered. I don’t have any pain. “See?”
For those of us lucky enough to live a relatively pain-free life, the enemy is numbness and loss of sensation, I guess that is the opposite of pain. Our numbers are relatively few (400 thousand), our disabilities not horrifying. My pal, Susan Thomases, politics whiz and Clinton confidante, refers to her MS as a “big annoyance.” When I was on the Advisory Council of the NeuroDiscovery Center at Harvard, we oversaw translational research on Alzheimer’s, Parkinson’s, MS, ALS and Huntington’s. Of those, I would choose MS in a second.
Just consider Alzheimer’s disease, a chronic condition dealing a deathblow to the mind, with statistics that indicate an estimated 5.2 million Americans have the disease. I am not an MS denier. MS is far worse than a mere annoyance. This simply is a matter of perspective. And perspective is a useful coping mechanism. I know that a lot of individuals out there in trans-Hudson America have it worse than I do. I don’t mean in any way to minimize their anguish. But I know what I have and what is out there, and I will settle for my lot in life.
We do not get to choose, however, and we are left to deal with whatever card we draw. I have said many times that I refuse to be a victim. How we choose to view a disease that attacks us on a daily basis will go a long way in shaping how straight we stand psychologically.

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Bob Simon

My friend, Bob Simon, died last night in a car accident in Manhattan. We had worked together in Beirut, Jerusalem and Warsaw. And we did our thing all over this country. Bob’s body of work was extraordinary. What people don’t know about Bob is that he battled prostate cancer and had other serious health issues.
Bob put himself into dangerous situations, from Vietnam to Iraq, where he ws held hostage for more than forty days. Bob was fatalistic. He often wondered out loud how long he would be around. He never seemed to be looking for a reaction. His comments were quiet and seemed genuine.
Some of Bob’s happiest times were spent on his motorcycle. He lived on the edge. Life is so fragile. All of us have our stuff. Bob’s battle with chronic illnesses matched any war he covered. He survived life threatening situations abroad and feared issues of health. Bob recognized his own mortality. I believe he died because he chose not to put on his seatbelt.

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