Never Say Never

I never thought it would be me.  I used to ridicule computer geeks for making friends on the Internet.  I even pontificated on the topic: I would never troll the web for lonely losers to be my friends; I would prefer to spend time face to face with real people.  The whole cyber-buddy deal seemed pretty weird to me.  Whenever I make pronouncements that hint at a declaration, the Universe comes along and knocks me off my feet. Often, I am treated to a simultaneous broadcast of a voice in my head whispering, “Stupido, stupido.”  My well-developed but scantily researched theory is that the three words  “ I would never “ attract attention from the powers that be.  Once uttered, the Powers to be do whatever is necessary to make sure that we never say never.

Just about two years ago, I was diagnosed with Ehler’s-Danlos Syndrome (EDS), I was stunned.  Nothing had changed  -- all of the medical issues with which I was faced were still in place. But it felt like everything had changed.  Suddenly, a lifetime of health problems fit into a single diagnosis.  Suddenly, I had a prognosis.  

I did one of the things I do best, I started research.  I spent about two weeks reading what I could find.  I tracked down leads on physicians willing to treat EDS patients. I evaluated alternative methods of medical care.  Finally, I found the Ehler’s-Danlos National Foundation ( EDNF).  The EDNF is national is scope.  They generate helpful information for EDS patients to share with their families, doctors and schools. There is a  large community of EDS patients who use INSPIRE, a medical board hosted by EDNF that lets people write both questions and observations.  I have benefitted most from this exchange.  People have shared what works for them, books they have read, medicines to avoid and so on.  

What’s more, they share an intimate part of themselves.  Living in chronic, debilitating pain can lead patients to believe that no-one understands their predicament.  Oft times, families do not understand EDS and can not accept what is happening to their loved ones right before their eyes. in the safe realm of cyber anonymity patients reveal themselves. They speak frankly of their struggles and describe what it takes to remain positive in the face of unrelenting pain.  It was how I got to know

aimee574, broklynite, ChaunteMaria, coonhound,Dessert1st, dsal, EDSMark, EhDoSomething, GigglesChristi, janeaustenfan, Mamajenny, MimmoMelissam, SlapASmileOn, UnmakedKay, Yogatech and so how many others.  

I consider it a privilege to know these people.  All of them are making the best of a difficult situation.  All of them care about others.  All of them of them try to live life large with Ehler’s-Danlos Syndrome.  EhDoSomething crossed the big divide.  We enjoyed our correspondence so much that she offered to visit me.  Over the past six months, she has come to visit me for two extended stays -- we enjoyed each other’s companionship so much that she stayed past our initial plans.  At this point, I consider her a friend. A friend from the Internet?  Come on, really?

Yesterday. I received an email that the EDNF has been picked up by Rare Disease Communities as an orphan disorder. EDS is found in 1 in 5,000 to 1 in 10,000

people. By the calculations of the Powers that be, that is considered rare.  The Rare Disease Community has drawn interest from many Ehler’s-Danlos patients who have started to correspond with each other. It sounds interesting enough but I am too busy. 

I would never get involved.

https://www.inspire.com/

http://www.rarediseasecommunities.org/en/community/ehlers-danlos-syndrome-eds

http://www.ednf.org/