My Achilles Heal

My back is killing me. I sound like a guy in his mid-sixties who has seen better days and wants you to know. I used to haul camera equipment up hills, race through war zones in search of safety. Then, gradually I lost the ability move quickly or just stand straight before a mirror and shave. My back is giving out on me. The muscles feel weak, as if I am about to lean forward and fold in half.
Is there one part of your body, a single joint or muscle that feels weak enough to bring the entire structure down? I keep thinking about that camel that agreed to carry one last thin reed of straw. Probably, he still is in some veterinary hospital wishing he had remembered to buy insurance.
I had a disc problem in my lumbar spine, maybe the result of the contorted way I carry myself. I had a lumbar fusion and was assured I would be whole again. Not. The stress of the surgery kicked in the MS. Now I stand at the sink, struggling to stand straight as I brush my teeth or shave. My torso begins to fold like a napkin. I finish the job sitting on the closed toilet cover.
It is not my legs that limit my walking to only a few city blocks. Again it is my back.
I am not crying in my beer. I know that many have it much worse than I. I try to strengthen my core. Physical therapy is tough. I see small changes but nothing to write home to mother about. She is 93 and would tell me to stop kvetching anyway. And I will now.
But does any of this sound familiar, an Achilles heal that will not heal and is nowhere near your foot?

36

Clarification

May I clarify one point? I am regularly chastised by a doctor friend for demonizing the chronically healthy. I see it as a catchy phrase, referring to those around us who are blessed with good health and move around, eyes straight ahead. They do not see us. We are not on their radar screens. There is nothing new here. They are not bad people, and I want nothing from them. OK?
A smile and door held open would suffice.
I, for one, want my private battles to remain private. I like it that way. I feel hesitant to overburden loved ones, but there is a larger point. I inhabit my own world. I keep lines of communication open but share only to a point. I am not hiding a secret life, only holding thoughts and perceptions close to the vest.
Each day I go out is a journey. New obstacles abound. I deal with them. No big deal. I do not talk much about them. They are boring. I wrote that there are no bad guys here. Why do some protest too much? I am comfortable in my skin. I wish others felt that same comfort and stopped focusing on the term, chronically healthy. It does not translate to war criminal.

39

Private Battles

This from Richatk8: “thank you Richard and all for sharing your thoughts and feelings. You are helping me begin to understand my wife’s journey. The more I know about the private battles you all face, the better I will be as a partner.” A nice thought. I believe it is the private battles that define the disease experience for the many. We all know about numbness. We push our way through foot drop and debilitating fatigue. Those are universal, sad realities.
The private battles are out of sight. The loss of independence, diminished self- confidence and shattered self-esteem are all too familiar. Making it in an unkind market place and finding our footing in the world of relationships take their toll. Such are the unseen skirmishes, the private battles with chronic conditions. But we cannot go public because the chronically healthy do not want to hear or know. Our popular culture jettisons us out into the street. Nameless others are not mean spirited or vindictive. They simply have no time for us. That is a fact of life in 2015. We are on our own. Surprised?
Yes, our private battles are large. In the end, they will define us, at least to ourselves. We are the only ones paying attention, anyway, the sum total of who cares. We are our own keepers. Do not look to government for help or by extension, to friends and neighbors. Illness is a solitary experience. There is nothing others can do, anyway. There are no bad guys here. No one is gunning for us. Private battles must be fought privately. Any war is with our own spirits and resilience. Those are gifts to ourselves.

55

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.

36

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.

30

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.

62

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.

59

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