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.

58

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.

16

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.

26

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.

31

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.

20

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.

30

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.

13

True Grit

I suppose my last post, I do Remember, displayed my flair for the obvious. Of course I remember. How could I not? Every response revealed that bittersweet memories are part of the luggage all of us tote everyday. We would be turning our backs on our own identities if we left those bags by the side of the road. The real question may be, can we insure that memory is good and not a springboard to bitter disappointment?
I believe there is no magical thinking that spares us some degree of, what? Despair? Grief? Pain? Those are strong words. If they apply, it seems to me, something is wrong. Example: the last time I drove a car was nearly forty years ago. It took me decades to get over my fierce, almost fiery resistance to facing facts. My optic nerves were failing me. Probably, that reaction was stupid, but it was how I felt. In Blindsided, I wrote of my anguish at always riding shotgun.
I do not want to write this topic into the ground, but isn’t something off here? I loved driving because it meant independence. That prized commodity has been withering on the vine for a long time. I think I have invested too much in my view of myself. I cannot speak for another, People are bodies in motion. Life is a journey. We cross one mountain and expect the next to be the same. Wrong. Maybe our grit has been misplaced, and we have to toughen up.
No one said it would be easy. Maybe we should not be surprised when it is not.

42

I do Remember

My last blog post, dealing with permanent loss and reliving better times, seems to have struck a chord. I am not surprised. That is an emotionally charged subject. MB writes, asking, “Why do some of us regularly revisit our memories of being healthy? Why do we find ourselves more disillusioned than hopeful?” Memory wields a double-edged sword.
On one hand, for some, there is little more than pure pain when we watch reruns in our heads, chronicling our days of health and happiness. Life sure seemed simpler then. Yet, I refuse to forget. I cannot let go. There are old photos on my computer that I look at occasionally. One is of me standing with PLO fighters in Beirut during a lull in the fighting. The photo calls up memories of panicked sprints through the streets and seeking shelter.
Another photo is of me on the Great Wall, with miles to go before we could climb down. If this sounds narcissistic, these photos are stored electronically and do not hang on my walls. These are remembrances for quiet times, and they do not make me feel bad. Yes, they harken back to days gone forever. But at my age, planning to relive these moments would be foolish fantasy.
To look at these mementos makes me glad to be who I am because I have been lucky in life. I could bore you to tears with details of what and whom I have covered. But they are private memories, not that I am above telling a self-serving story once in a while. When my kids were young, I would tell tem to gather ‘round so I could tell them about my early years in journalism. They would scream and run from the room. It was great fun.
Our memories are part of who we are, and I believe we need to hold on to them. I want to celebrate. Certainly, I have my moments, such as watching Meredith on snowshoes, heading off on an adventure. I have not traveled beyond sadness. I have a great photo with Walter Cronkite from his last day as anchor of the CBS Evening News. We were heading off to Houston the next day so Walter could ride the simulator with the first space shuttle astronaut. That footage in my head will be available for me to screen for the rest of my life.

47

Touching the Past

I stare out the window, realizing the snow is falling faster and more fiercely than I have seen, perhaps in my adult life. Memories of relentless snow from a Connecticut childhood run episodically on the projector in my head. Meredith just vanished into the blur of white, checking out a nearby trail. I think of the posts I have written about my life as a spectator, watching others do as I strain to even just see. Sometimes I just bore myself with frustration but cannot stop.
I cannot make my peace. I am not sure even that I want to. Making peace means accepting. For me that is a step too far. Throwing in the towel means surrender. What is the point of prolonging a fight that cannot be won? I am grateful to be included in a stem cell clinical trial. My expectations remain rigidly in check. Slowing the disease is significant, but there will be no reversal of fortunes. I am not a pessimist but a realist. I feel I know.
Does the hurt of permanent loss have to commit one to a life tinged with sadness? I enjoy a good life. I really do. I am privileged and try never to forget it. Yet it does not feel like a contradiction to admit that I desperately miss normalcy, the ability to do. That will not change. Perhaps I keep that hurt alive through memory. I do not want to forget. Sometimes I feel I can almost touch what is gone. That may be self-indulgent, but these memories keep what once was real and reachable. Maybe that is good, because it always will remain a piece of who I am.

65