Friday, March 12, 2010

A Tale of Two Nights – Rising to One Difficult Challenge of Living with ALS

Recently I read an article by historian, Tony Judt, called “Night”. It is one of a series of personal reminiscences that Mr. Judt has been writing for the New York Review of Books. In this particular piece, he describes what it is like trying to survive a typical night for someone who is nearly completely paralyzed. As someone with considerable experience in this endeavor, I can confirm that getting a good night’s sleep is potentially one of the most difficult tasks in dealing with ALS. Mr. Judt has been living with the illness now for about a year and a half. In his article, he describes the intolerability he experiences and the anger he harbors towards this unwanted and overpowering bed partner. He describes the challenge of getting through the night with eloquence and painfully detailed accuracy. You can find the piece at the following link:
Night - The New York Review of Books

As someone living with ALS for nearly a decade, and sharing a level of immobility comparable to Mr. Judt’s, the article stirs in me a great deal of compassion as well as a sense of “close to home”. However, what it brings into sharpest focus for me is the degree to which I have grown to master such circumstances by focusing my mind on thoughts that encourage, gratify and sustain me. After my health aide has completed the process of arranging my body for optimal possible comfort in bed, while lying there in a mummy-like state, I guide my mind away from my physical constraints. Instead, I turn my attention to prayers, visions of being healed, and gratitude for my remaining capabilities and the people in my life who sustain me.

It has taken me several years of dedicated practice to reach this point in dealing with the difficult challenge of sleeping with ALS. And even with years of practice, I cannot profess to have yet achieved a state of complete evolution. The result for most evenings, however, is to doze off within a few minutes of closing my eyes and rarely awakening more than once (usually to empty my bladder into a strategically placed bottle). Occasionally, I will have to disturb my wife’s sleep to handle an intolerable itch or an adjustment to my Bi-PAP. Fortunately, we are both typically able to fall back to sleep quickly and easily. My slumber is often accompanied by pleasant dreams in which I am fully mobile.

As if the battle with ALS was not enough for anyone to deal with, I am also a life-long member of the Tourette’s Syndrome club. The urge to twitch in a precisely particular way can be both mentally excruciating and physically irresistible. Imagine having an overwhelming need to flex a muscle while living in a state of nearly complete paralysis. Had I not learned to control the focus of my mind, I surely would have lost it by now!

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