What Fear of ALS Taught Me about Serenity and Emotional Distress

Dec. 5. 2012

Since Sept 28, 2012, I’ve been living with the possibility that I might have amyotrophic lateral sclerosis, usually called ALS, or Lou Gehrig’s Disease.  I don’t think I do, but ALS was my biggest fear long before any doctor said I might have it.  I think I have pinched nerves, which are treatable, but docs always eliminate the worst possibility first, and they haven’t eliminated ALS yet.

I’m in the third month of waiting for them to confirm or eliminate ALS.  For two months, I was immobilized by fear of ALS.  I’m over the worst of that now, but not because of anything the doctors said or did.  They’ve just sent me to other doctors and to demanding, inconclusive medical tests.  It must be similar to what people waiting for a cancer diagnosis go through.

This is the story of how I overcame fear of ALS, and got my life back, while still waiting for an answer.

I’m better because my friends taught me about the mind-body connection, serenity, and the intimate relationship between physical pain and emotional distress, which, I learned, does not mean my very real physical pain was “all in my mind.”

ALS is a certain, slow death.  Your mind remains alert and aware while your body gradually loses all function.    People in the final stages sometimes –in states where it’s legal — qualify for physician-assisted suicide.

For two months, my life was taken over by doctor visits, medical tests, fear of ALS, and pain. I could not focus on my normal daily activities.  My chronic back pain also got much worse.  I’m still seeing specialists and having tests.

Dr. Gwen Broz did not mentiion ALS

Dr. Gwen Broz did not mentiion ALS

The one doc who helped, Corinna West’s mother Gwen Broz, saw all the tests the other docs did, and did not mention ALS.  She made several suggestions aimed at improving my general health, which are helping with my fear and back pain.  By following her nutrition suggestion, I lost 12 pounds the first week, mostly excess water.  Imagine how much better your back would feel if you stopped carrying a 12-pound weight everywhere.  Mine feels much better.

(The other docs I’ve seen disrespect her because she’s an osteopath, not a “real doctor.”  Even worse, she is cross-trained in Native American medicine, which makes her practically a witch doctor in their eyes.)

On July 31, I sprained my thumb, and wrist.  On Sept. 28, my doctor was so alarmed by their weakness that he sent me to a neurologist, who sent me to another, who sent me to another, at Dartmouth-Hitchcock Hospital, a famous teaching hospital.  The second neurologist was the first to say ALS was one of several possibilities.,

The insights from Dr. Broz and my other friends are not new, but they were new to me, especially after feeling them demonstrated so dramatically in my body.  Several times, my back felt relatively OK, and started to hurt when negative thoughts crept in.  For about 10 days after I became terrified of ALS, my back hurt so bad I was practically crippled.  I did not connect my physical pain and my stress level at the time.

My neighbor Marc Baum, and my best friend Corinna, tried to explain the mind-body connection to me in very intellectual terms.  Corinna used the expression “biofeedback loop.”  Your pain causes emotional distress which causes more pain.  To me, it sounded like they were blaming me for my pain, or saying it was all in my mind.  That upset me.

Megan Wood:  It's acceptance

Megan Wood: It’s acceptance

My dear friend Megan Wood of Allenstown, NH understood what they were saying right away:  “It’s acceptance, letting go,” she told me.  Everything fell into place for me when she said that   Megan is not an intellectual, but has more intuitive emotional intelligence and uncomplicated faith in God than anyone I know.

Acceptance meant I could stop being scared of becoming a cripple because I had been a partial cripple since I hurt my hand.  I became able to ask strangers for help.  It’s amazing how willing most people are.    It makes them feel useful and good about themselves, almost as if I’m doing them a favor by asking.

Acceptance allowed me to learn new, less frustrating ways to do simple things, like get dressed or out of bed.  I’d been fighting with myself, firing up the biofeedback loop first thing every day, because those simple things had become so hard.

A few days later, Dr. Broz taught me that pain comes from things like inflamed discs (which my MRI’s have shown for years). “We need pain to tell us there is something wrong inside.  Suffering comes from the stories we tell ourselves about our pain,” she said.

Without a firm diagnosis, ALS was a story I was telling myself that caused me terrible suffering.  Since there was nothing I could do about ALS, why worry?  I was OK and resumed my healthy activities. Then my doc, and the nurse at Dartmouth-Hitchcock who called to confirm our appointment, scared me again, and I was no longer OK.

For 24 hours, I complained to friends that those two doctors were borderline sadists.  My brother talked me out of being mad at them.  “Do you want them to lie or conceal?” he said.  “You’re really angry because of fear of ALS.”  David Braiterman is wise and rational.

Since I had already learned about acceptance and the mind-body connection, and had gotten my fear of ALS under control once before, it was easy to do again.  Now, I’m reading, writing, walking, making music, leading mental health support groups, and going to my church again, everything I used to do but could not for a while.

I feel pretty good, taking things one day at a time, letting the medical process take its course, and implementing more of Dr. Broz’s suggestions.

“GOD, GRANT ME THE SERENITY TO ACCEPT THE THINGS i CANNOT CHANGE, CHANGE THE THINGS i CAN, AND THE WISDOM TO KNOW THE DIFFERENCE.”  — The Serenity Prayer

 

 

 

Wordworks Blog Author: Ken Braiterman

Ken Braiterman, Wellness Wordworks board chair, has been an activist, news reporter, opinion writer, and columnist since 1968. From 1997 to 2009, he was New Hampshire's leading advocate for recovery-based mental health services. He is an advanced Wellness and Recovery Action Plan (WRAP) facilitator.

1 comment to What Fear of ALS Taught Me about Serenity and Emotional Distress

  • Pat madison

    Ken,

    Very well written article.

    I am thankful that you have found the tools to get through this unknowing stage of your current health status.

    I will keep you in my thoughts and prayers.

    My best to you