Support R Us

I never really got behind the idea of support groups. I could see how they might benefit others, such as grieving spouses or recovering addicts, but I never thought it would be comforting to tell my woes in front of a group of strangers. In fact, in my mind, it would be discomforting. I didn’t want to listen to the whining and complaining and declarations of victimhood of others, and I didn’t want them to listen to mine. I guess I took my emotional cue from that astute observer of human behavior, Tony Soprano:

“Whatever happened to Gary Cooper?” he tells his shrink, Dr. Melfi, “The strong, silent type…he wasn’t ‘in touch with his feelings’ – he did what he had to do…once they got Gary Cooper in touch with his feelings, they wouldn’t be able to shut him up!. And then it’s dysfunction this, and dysfunction that, and dysfunction ma fangul!”

When I became paralyzed, I figured that I would Gary-Cooper my way out of it by force of will and refusal to whine or lay the blame on anyone but myself. I did it my way and after years of despair and confusion, it worked out okay. Only later was I asked to join a group of other transverse myelitis (TM) survivors in an occasional get-together at an independent living center in Orange County. I initially went out of some misplaced obligation, I guess, and since it was a long drive for me, often simply weaseled out of going altogether.

But then I saw the light. Last Saturday’s TM support group lunch-and-talkfest turned me completely around. It took seventeen years, but I finally got it.

The meeting, run by TM soulmate and chair user Cindy McLeroy, started out in much the same way – someone brought little sandwiches, someone else the macaroni salad and the hot dip, and we ate and kibitzed. First I was surprised at the turnout – 13 or 14 people with the disorder plus a couple of caregivers thrown in. Remember, TM is as rare as hen’s teeth, as they say back on the farm. There are maybe 1400 new cases a year in the US. Divide 316 million by 1400. It’s .00000-something.

The format of discussion was much the same as any such group: you go around the room and everyone tells their story, or an update on their story, and yes, there is plenty of ####ing about bad doctors and wrong meds and such. But beyond that – way beyond that – were a series of engaging, insightful stories by a group of engaging, insightful people who would never have met under any other circumstances. On my right was my good friend, Robert Slayton, a distinguished history professor at Chapman University. On my left was Rick Benson, the administrative supervisor of Mariposa County on the southern edge of Yosemite. A couple of seats down was Nicole Magner, a former Olympic-level competitor in the bobsled. I guess that if this were a board game, she’d be The Athlete. There was also The Librarian, The Nurse, and The Eighty-Seven-Year-Old Wonder Woman. It was a good group.

TM is a weird disorder – it attacks people in a hundred different ways. No one in this circle had the same clinical profile. But there were some common themes that kept popping up, themes that I had never fully grokked before then. Here are three:

  1. Pain. Everyone, those in wheelchairs and those who looked otherwise “normal,” had some variation of neuropathic pain, meaning pain that comes from damaged, unstable nerve cells, often in an area that is otherwise paralyzed. This kind of pain is often described as burning, squeezing, pinching, or pins-and-needles prickly. It’s hard for outsiders to know what you are talking about. Neuropathic pain seems particularly susceptible to the glib, “all in your head” diagnosis. Since it doesn’t have a direct source, like a broken arm or aching back, it must be psychosomatic. Change your attitude, so this dismissive thinking goes, and lose the pain. That is, in a word, a crock.
  2. The Invisibles. Those with TM whose impairment and pain is invisible – they don’t need wheelchairs, canes, or walkers – are the ones who face the greatest skepticism from outsiders. Looking at it from their perspective, it’s almost a blessing to have a prop like a chair to validate your condition. The Invisibles have to constantly explain and justify their behavior, like they were on trial for malingering. They are also the ones often challenged by self-righteous chair users when parking in a disabled spot. “Hey, what’s wrong with you, bud, you look perfectly healthy to me!” Never judge a neurological disorder by its cover.
  3. Fatigue. Systemic fatigue, as experienced by damn near everyone with TM or MS, is not “fatigue” in the I’m-all-tuckered-out sense, in the same way that clinical depression is not the same as feeling bad after your girlfriend leaves town. And as this group unanimously, and vociferously, agreed, persistent fatigue is the hardest thing to get across to the uninitiated. One lady, I think it was The Librarian, tried to explain to her teaching colleagues her chronic fatigue, and they just hooted and hollered. “Hey, join the club – we’re all exhausted from this job!” I get the same reaction when I tell friends that I take a daily nap. “Really? Boy, you’re living the life!” Even when I try to explain, it sounds like an elaborate excuse to goof off. It makes you want to scream.

Initially, I thought I’d duck into this TM whine-athon, down some pizza and lemon pie, and hightail it back to LA and the Dodger game. Four and a half hours later, I was in no rush to go anywhere. These fellow TM’ers weren’t there to cry in their soup. Unbeknownst to them, they were there to help me unburden myself from some unseen sources of guilt and frustration. I don’t like to cross Tony Soprano, but maybe if he had found a mobster support group and gotten in touch with his feelings, he wouldn’t have had to whack so many people to get his point across. But, then again, the next time someone blithely announces that “everybody” has pain and fatigue, I may, in Tony’s words, “do what I gotta do.”

Screen Shot 2013-09-03 at 8.39.37 AM~ Allen Rucker contracted TM in 1996 at the age of 51, and was paralyzed from the attack at the T-10 level.  Allen published a memoir about his life after getting TM; “The Best Seat in the House.”  It is now available in paperback.  As his memoir so brilliantly conveys, Allen is on a journey.  That journey has taken him into a life as a speaker and an advocate for the transverse myelitis and disability communities.  Through his many speaking engagements, his appearance on the Montel Williams Show, and as a contributing writer for ABILITY and New Mobility Magazines, Allen is raising awareness about transverse myelitis.  He is the author and co-author of numerous books of humor and non-fiction. “The Sopranos Family Cookbook,” one of three books he’s written about the Sopranos, was a New York Times #1 bestseller.  Allen is the chair of the WGA Writers with Disabilities Committee.  He lives in LA with his wife, Ann-Marie. They have two sons. Follow him on Facebook and visit his website for more information.

This blog was originally published in the Life After Paralysis blog series on the Christopher and Dana Reeve Foundation website. Click here to view the original article.