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Shadow Boxing

January 5, 2011

I’m better now, I guess. But it seems my battle has only begun. How do you explain an ailment that doesn’t exist?

When I contracted Lyme Disease the world had been dumped on its head by an economic cataclysm. I didn’t even know a tick had bitten me. I was too busy trying to figure out how to keep myself going as the financial services world I’d made my living from collapsed in ruin and ground my psyche to pulp. I felt bad: physically bad. Fatigue and heart palpitations were daily companions. After a brief stint with a therapist to try to deal with what I thought were psychological issues, I finally got clobbered by a raging infection from a bunch of bacteria who had been lurking inside and decided to have a party on one of my cranial nerves. The match was on.

The story of my medical treatment is passionate but lacks universality in the Lyme world. Besides, I’ve told it before. The next part is less revealing about me, but more important to us (my LymeBuddies, that is). I’ll try to keep it short and sweet.

The world doesn’t manage well with things that are not readily visible or currently explainable. Chronic Lyme Disease fits neatly in that niche. I have no idea what it is but I know that it is. I’m sure that there will
be an explanation one day, but right now I am free from the spirochetes that infected me yet burdened by the damage they’ve wrought. The burden isn’t obvious to those who don’t know me well, but it’s heavy inside. I deal quietly with it and I’m glad to be back to a place where I can function with relative ease and
vitality.

Yet I meet people daily who are less fortunate. They are labeled lazy, malingerers, psychotics or worse. The victims of Lyme come in many hues. Certainly it’s easy to imagine poor souls who find refuge in feigned illness, but the real Lyme folks I’ve met in the past two years demonstrate to me that such a conclusion is both unkind and unwarranted.

A woman, a loving wife who is raising two robust boys and working two jobs, collapses in the middle of a road race. She’s barely able to get up in the morning and put her socks on. She’s unable to shave her underarms because she can’t raise her hands above her hips. She sees a doctor and she’s told she has psychological problems. Perhaps a “woman’s thing.” But she’s stubborn and begins to make the medical rounds until, finally, yetanother test confirms a diagnosis: Lyme Disease. She get’s her treatment and goes back to her life. She runs a damn marathon. She’s fine, right? Not really. I know her. I see her when she’d rather not be seen … on the days she needs a nap in the morning and her bones ache.

An owner of a construction supply company (a self-made man) becomes ill. Probably a flu. Yet it lingers and he can’t get enough sleep to keep from dozing off at his desk. He’s told it’s stress. He needs to relax more and eat better. Then one day, he’s rushed to the hospital … heart attack! “Sorry, no, your heart’s fine,” he’s told, “but we ran your blood tests again. You’ve got Lyme Disease.” He’s treated with massive intravenous antibiotics and his symptoms subside. He goes back to his normal life. Well, kind of. Three years later he still has confusion sometimes, bouts of fatigue drain him and the left side of his face
is still numb but it doesn’t show. The joint pain is a killer when the weather takes a turn but he never complains. His employees whisper behind his back. They think he’s become lazy in his success.

A feisty doctor (a highly regarded M.D. here in Maine) comes down with Lyme Disease and fights valiantly against it. Ravaged for over a decade, she struggles on, founds the International Lyme and Associated Disease Society and, finally, dies this August at 57. “Oh,” say many who never met her, “but she didn’t die from Lyme Disease.” “Well,” I reply, “people don’t die from A.I.D.S. either.”

A world-class rock musician is diagnosed with everything from Lupus to MS until, finally, Lyme presents
itself. For three years he fights but the symptoms persist. He lives alone. Crippled by pain, fatigue and confusion he’s unable to leave his home. He can’t play. Finally he ends the suffering. By choice. It’s reported as a suicide. I suppose the report is correct, but that’s not the story.

These are all people I’ve seen. I’ve looked into their eyes. We don’t make this stuff up. And yet, I find myself sparring with a phantom who seems invisible to the rest of the world. I no longer engage in discussions about medical treatments, divine intervention or holistic cures. I focus on spreading the word that there are bobs and weaves, feints, clenches and subtle footwork that can keep the match going until someone figures out a knock down punch or at least an effective combination of jabs and uppercuts. The first step, of course, is getting the audience to acknowledge that there’s actually someone else in the ring.

Please join the fight. Others can deal with cures and remedies. I just need your help dispelling the myth. Chronic Lyme Disease isn’t a figment of deranged minds.

It’s as real as your shadow.

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One Comment leave one →
  1. Sally permalink
    January 20, 2011 12:19 pm

    This is truly a disease that has as much implication on the psychological well-being of the patient as the physical. I am treating for late stage neuro-lyme. I have seen many physcians who preferred a diagnosis of fungal rashes and mid-life crises to explain away my symptoms. I have also seen several psychologists who have been oh-so-quick to prescribe antipsychotic drugs rather than explore underlying physical etiology. I, too, have seen the blank, longing stare in the eyes of those suffering from Lyme.

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