Pop-Up Support Group


The waiting room in the Neurosurgeon’s office resembled the aftermath of a minor bus accident-minus any visible blood. ¬†A novice might have mistaken it for an ER.

The Scene

A half-dozen young women are wrapped in neck braces; one sits in a wheelchair as her husband caresses her hair. A twenty-something (initially upright but winds up on the floor) injects her veins with several medications she pulls from a large bag at her feet.  Her mom, a nurse coaxes her along. Three hours in waiting, I offer my seat to a severely underweight, frail looking girl, then toss my back pillow on the floor where Miss Injectable fights to get comfortable.  These are the faces, and bodies of Ehlers-Danlos Syndrome (EDS).

Camaraderie

Within minutes of arrival, we trade war stories, compare medical histories, share injustices and point one another to additional resources and clinicians. Surgeries are ticked off like menu times, many have had dozens.  Empathy is rampant. We legitimize, validate Рthough no explanations are needed.

When I was offered a snack by a fellow EDS’r jeweled with six finger splints, I couldn’t open the package. ¬†I assumed she couldn’t either so I automatically slid the box to her mom, we all laughed. ¬†No words needed. ¬†There is rarely a shortage of humor to keep us occupied, bring much-needed levity, and infuse us with best medicine money can’t buy.

The newbies, there for an initial consult, either sit back quietly and observe, tune out with ear buds, or hang on to our every word. There is visible concern, curiosity and…hope. ¬†My motto, always leave folks with hope. ¬†There is plenty. We, the groupies and self-appointed welcome committee set the stage for ‘the man.’

His Majesty: The charming, over-extended, world-renowned Neurosurgeon and EDS expert, Dr. H.  He is worth his weight in gold. People plagued with puzzling, debilitating symptoms travel from near and far for his help. Many are desperate, hanging on by a thread.  Countless lives have been resuscitated and restored by this compassionate, extraordinary man. Bonus, he seems to get a kick out of the pop-up scene scattered in his kingdom.

Call It A Day

Bleary-eyed patients leave their appointments with a familiar look of glad that’s over and gratitude.¬† Some will deal with a new diagnosis of EDS and related disorders, others were there for surgical follow-up and many will require additional surgeries. ¬†We nod, sigh, offer smiles of support and pledge to be Facebook friends.

This strong, determined group of individuals, brought together by unseen forces and held together by our fearless leader, is simply awe-inspiring!

  • When do you feel most accepted, understood or effortlessly fit in? ¬†It is a nice welcome mat, right!

See EDS resources for online support groups, educational/clinical resources and other related information.

 

 

 

2 thoughts on “Pop-Up Support Group

  1. So well put and so true. Being one of them, the “zebra’s” you nailed it, to the core! This is the scene, and we are the warriors. Nice post.

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