I’m running an EDS and/or POTS support group on Sunday that meets every few months, and one of the groups I posted it to took down the announcement because it was “in competition” with their group, which also meets every few months (not at the same time).
This makes me sad. I would like to see thousands of these groups, so that anyone who wanted to could go down the block on any given day and get the support they need. Never would it cross my mind not to advertise other groups – in fact, I do it all the time. The only reason I started running these groups in the first place was to become the very thing I most needed, because it was so rare and virtually inaccessible.
If the chronic illness community sees support groups as competitions, we’ll have even less help than we already do. We have too many enemies within our own bodies to also have to combat each other. Imagine, by contrast, if we all worked together (the way so many of us already do) – what couldn’t we accomplish?
PS: Now I have another guy angrily telling people that because he once went to a support group in *Milwaukee* that wasn’t good, people shouldn’t go to mine, either, and that “Facebook is better.” %@*#@$%
</rant>
I haven’t spoken about this publicly yet, but I have not been able to use my right shoulder for the past month. At first because of a defect in one of my rotator cuff tendons, and then because of the extraction process, which required a cut into 75% of that tendon. Since I have connectisue tissue disorder (EDS) which damages tendons and ligaments, the prospect of cutting into a tendon is extremely daunting.
I should have recovered my range of motion after 3 days, but on day 13, I still could not move, and was in fact losing motion by the day – an indication that I might never use my right arm again.
And then, suddenly, at 2:30 in the morning – just 3 hours after the most painful and limited attempt at movement yet – my arm suddenly came back into being.
It was like seeing magic, and in that moment, I could barely breathe. I began to cry, in joy and relief. I don’t know what to take from this – many lessons are tempting. But all I know for sure is that even the most seemingly hopeless of situations sometimes changes for the better. And that change can happen in a single moment, when you least expect it.
With my renewed use of my arm, I wrote this poem:
Rediscovery
I move my arm through the air
Like I am dancing through time
and space
Like a child discovering my working body
For the very first time
I smile and laugh
Giddy and delighted
At what once escaped my notice for 29 years
How wonderful would life be
If we could rediscover it
With each new sunrise?
To awaken to ourselves
And witness
Every breath
Every sound
Every sight, feeling, and movement
As the miracle it is?
© Michael Bihovsky, 2016
I would be incredibly remiss after my post yesterday about the brutal and tragic murder of Philando Castile if I did not also take time to express my horror and outrage about the slaying of five Dallas police officers out of supposed “revenge” for the murders earlier this week.
There is no revenge for murder, let alone revenge that is aimed not at an individual, but at a group that an individual belongs to, whether it is his profession or the color of his skin. There is no revenge for murder. There is only more hate and more murder.
Policemen are, on the whole, extraordinary. They offer us their service, their protection, and in terrible cases like this, their lives. My heart goes out to the victims of this senseless violence, and to their families. I thank and honor them for their service and protection, and pray that by some miracle such acts of hate will demand that we all look at each other very closely, beneath race and sex and religion and politics and every other trait, and see our own selves in each other’s eyes.
Today I forced myself to watch the most terrible thing I have ever seen: the brutal aftermath of the murder of Philando Castile at the hands of Minnesota police. The screams of his girlfriend, her four-year-old daughter softly saying, “It’s okay, Mommy. I’m right here with you.” That will haunt me forever. As it should haunt all of us.
Why did I watch this? Because in a country where black men and women are gunned down daily, where people I love are posting in multitudes about their fear for their own lives, the only thing that is in my power is to not close my eyes.
My eyes are open. And my heart is open, even though I know it will provide little if any solace. I am so sorry that this keeps happening. May we all rally together with the balance of love and anger to create a better world. We can do better. We must.