[BobbyB]

A time of peace and talk of the soul
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Article Last Updated: 09/23/2008 02:19:28 AM EDT


Handsome and appearing more youthful than his 40 years, Robert Murray, a Bethel Health Care resident who was diagnosed in 2005 with amyotrophic lateral sclerosis (ALS), radiates robustness and startling strength.
He smiles broadly from across his room that overflows with sports memorabilia and this day he's wearing a blue Yankees shirt.

It's only when I reach to shake his hand that I feel the brace and become aware of braces on both atrophied legs and his other wasted hand and forearm.

His speech is halting; frequently his words are difficult to understand.

"The Ap-ril before I was di-ag-nosed"¦ I used to work out"¦ at the gym"¦started dropping 5 to 10 pound dumb-bells when I could nor-mal-ly hold 100 pounds"¦ I used"¦ to be at the gym two hours ev-e-ry day"¦"

Also known as Lou Gehrig's disease, ALS is a degenerative disease affecting the nerve cells in the brain and spinal cord with early symptoms that include increasing muscle weakness, especially of the arms and legs and in those muscles involved in swallowing, speech and breathing.

After much testing and many puzzled doctors, Murray, who reports that ALS is one of the top most misdiagnosed illnesses, did his own online research. Though he already suspected it, ALS was finally confirmed along with a three-to-five-year average life expectancy.

For a second opinion on treatment, Murray went to Columbia Presbyterian hospital which, he had learned, was

one of three American hospitals that "are constantly doing ALS clinical trials."

"I asked them"¦" he said, "what type of fu-ture do you"¦ (hesitates, swallows hard)"¦ how long have you seen some-one live with ALS? They said 40 years"¦"

Murray pulls his mouth tight, averts his eyes to look out of the window "¦ his chin quivers and we sit in silence for some time.

"Hope," I finally say.

He nods, then after awhile continues.

"Then he"¦ this was a de-ci-ding mo-ment "¦ (may I please"¦ have some wa-ter?)"

I hold the cup with the straw to his lips as he drinks.

"Thank you." Long pause, he coughs, clears his throat and begins again.

"This was the best: He goes"¦ do you want to be part of the"¦cure team?" His eyes are full of tears, which spill down his cheeks, and there's another hiatus.

Finally, voice breaking, I inquire "What was that like?"

"Ver-y, ver-y up-lifting," he responds quietly. A long pause, some grunting sounds in his throat then, "I par-ti-cipated in seven or eight clinical trials -- med-i-ca-tions, cog-ni-tive think-ing, en-vi-ron-men-tal sur-veys, fami-ly his-tory, testing of skin stem cells and DNA. I'm on a drug trial now."

"Are you afraid?" I ask.

Murray shakes his head. His right foot frequently twitches, making tapping sounds against the metal table leg. Now, though continually looking out of the window, he is completely present.

"I have no pain," he insists. Several minutes pass. "You talk about fear -- um ahh, the only fear I had was: Would I be gasping for breath? A friend of mine that died in December of ALS went into carbon dioxide coma -- when I heard about that, I wasn't afraid -- I heard that's what normally happens."

We sit quietly, once more until he says, "What else do you want to ask?"

"Can I have one of your tissues?"

He laughs. "Sure."

I wipe my eyes and nose.

"What else do you want to ask?" he repeats.

I sigh deeply. "Are you angry?"

"I never was"¦" long pause. "Were people in my family angry? Yes," he answers emphatically, then advises, "Don't over abuse your body, but don't worry about the way you look all the time -- worry about how you are inside."

"What are the important things?" I question.

"All depends on what you need to grow. Fear keeps us in situations. Fear keeps us from changing"¦"

It's quiet, yet again: peace and quiet.

Indicating a motorized wheelchair by the door he tells me, "I walk from here to that chair: no marathons anymore. They lift me up and that's it."

A moment later he adds, "I love the challenge."

--¦I, umm, ah"¦," Murray starts, coughs, then after asking for and sipping more water says, "I look at it as our souls"¦ah, um are not part of our body but... our bodies are an extension of our souls that grow."

"What is a soul?" I wonder aloud.

"Energy"¦ conscious-ness," he replies without hesitation. "We go through tribulations, turmoil and tribulations for growth of the soul. Our bodies are just rentals"¦ the soul keeps living."

n

For further information on ALS go to www.alsa.org or www.mda.org . For a local charity that helps those with ALS, go to www.voiceforjoanie.org.

Linda Napier is a registered nurse, an independent consultant and author of the book "Tender Medicine." You can contact her via e-mail at lindanapier@netzero.com.



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