Michael Bihovsky’s Blog

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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.” %@*#@$%

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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.

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.

I know you’re not supposed to “politicize” a tragedy, but I also don’t know how to live in this world if we don’t learn from mistakes, especially when they have such deadly consequences. Just last week, President Obama talked about how because of the NRA (and the politicians they fund), the government can’t even prevent people on terrorist watch lists and known ISIS sympathizers from buying guns. Well, this gunman was both of those things, and the subject of two FBI investigations. The government KNEW he was dangerous, and because of the NRA, was powerless to stop him. He bought this gun legally. And now 49 people are dead, 53 injured, thousands upon thousands of family and friends in mourning. How many more will there be?

This “assault-style” rifle is the type of weapon al-Qaeda encourages followers to buy in the US to inflict mass casualties. It was illegal until 2004, but then Congress let that ban expire. This gun’s job is mass murder, and it does that job well. An “assault-style” rifle was the San Bernadino gun, the Aurora gun, the Sandy Hook gun. Now it’s the Orlando Pulse gun, too. And if you want to go buy one right now – you can. Even if you’re on a terror watch list and a public ISIS supporter. Even if you are mentally ill or a convicted felon. This gun is yours, if you want it.

I refuse to believe that there isn’t a way to protect people’s right to hunt and/or protect themselves, and still get weapons like this off the market and out of the hands of terrorists. 91% of people want it done, including most NRA members. But it doesn’t happen because of the demagoguery of NRA leadership and the cowardice of the overwhelmingly Republican politicians they pay off.

I don’t ever want to hear again that Republicans are the ones who are “tough on terror.” Because THIS is terror. And they let it happen. And they will let the next time happen, and the next, and the next. Make your own decision of what to do with that information.

https://www.washingtonpost.com/news/wonk/wp/2016/06/12/the-gun-used-in-the-orlando-shooting-is-becoming-mass-shooters-weapon-of-choice/

When I was 19 years old, I wandered into a support group called Friends In Deed. Since most people there were dealing with physical conditions far more lethal than my own, I was afraid that by going there I would somehow be disrespecting the other group members. Instead, I was welcomed with open arms by an entire community, led that night by a man named Robert Levithan.

Robert was one of an elite handful of group leaders, a gifted and compassionate psychologist who always knew how to delve right into the crux of an issue. He was also an inspiring and prolific writer, and regularly wrote columns for Oprah Winfrey and The Huffington Post, as well as his own popular book “The New 60.” Robert was a passionately hopeful and fierce fighter, for LGBT rights, for HIV/AIDS advocacy, and for his own health. You see, 20+ years ago, Robert was told he only had a few months to live with HIV – a fact he often relayed in order to tell people like me that no matter how dire and hopeless life seems, you never truly know what’s going to happen next. No matter what the doctors say, or the statistics, or the medical journals, or even all the terrible voices in your head telling you it’s over – you just don’t know.

Robert fought more battles than I can count, and he did so with the most peaceful and warm smile you could imagine. I lead support groups myself now, and I will always, always remember Robert when I do so, to pay forward all of the peace, passion, love, and determination that he sent my way.

In February, in response to his unexpected metastatic cancer diagnosis, Robert wrote an article called “This is Not My Last Battle.” In retrospect, this is terribly sad. And yet not. In adopting this attitude, in living this attitude, Robert once again refused to let his life be dictated by a diagnosis. He went to Brazil, he rode horses on the beach, he wrote articles, and stayed in control of his own life for as long as he could.

“Some people fear death,” Robert wrote. “Some people fear suffering. I only fear fear.”

Yesterday we lost a giant. Jack Lee, musical director, conductor, and arranger for literally more Broadway, Off-Broadway, and national tour shows than I can count. He was 86 years old.

I have so many stories to tell, but Jack himself would probably tell me not to yammer and get to the point. So I’ll try (and largely fail) not to go on too long.

I studied musical theater with Jack at NYU, and he’s been a mentor ever since. Jack’s living legacy in my own acting and teaching was the surprisingly rare notion that there is no “acting for musical theater.” There is only acting. And even that should be as natural as everyday life. I can still hear Jack’s voice, anytime any of us got too presentational: “Stop ACTING!!” My students will recognize this as a very Michael Bihovsky thing to say. Well, that’s because it was a very Jack thing to say.

A year after college, Jack asked to hear the album and read the script for Fresh! A New Musical. I was kind of terrified, because Jack tended to loathe any composer born after 1900. Two weeks later I got a call:

“You know what Michael? Most fuckers these days can’t even write a melody. So I gotta tell you, I did not expect the level of goodness in this show. There’s someone I need you to meet.” That someone was theatrical genius, director, and Buddha of our times Guy Stroman. Thanks to this connection, I was introduced to the best lessons in acting and writing that I’ve ever had, along with a new community which welcomed me with open arms. All thanks to Jack, who also continued to provide me with priceless feedback to improve my own compositions. Jack’s most profound influence in my music comes in the form of my musical underscoring for spoken scenes, and the hours of conversations we had about the ability of music not just to guide an emotional experience, but to actually tell the dialogue’s story and subtext via the music itself.

The last time I called Jack, I could hear someone singing in the background at his apartment, and Jack kept asking me to repeat myself until finally he yelled out, “Jesus Christ – Chita, can you STOP for a second?? I’m on the phone.” That, of course, was Chita Rivera, just one of Jack’s many casual houseguests.

To borrow a phrase from the Night’s Watch: “We will never see his like again.” The 86-year-old musical wizard who cursed like a sailor, played piano like he was in Tin Pan Alley, laughed without restraint, and treated his students as a combination of canvas, trophy, and friend.

Thanks for everything, Jack. If there’s a musical theater heaven, I hope you’re hanging out with Gershwin, Porter, Berlin, and Weill. Because Lord knows that if it’s any modern composer, they’re gonna get an earful.

Today is Rare Disease Day (February 29! Get it?). By the very term “rare diseases,” it’s easy to think that this is a tragic but small issue affecting a small number of people. This is anything but true. For starters, a rare disease is defined as any illness which affects fewer than 200,000 Americans. That’s already a large number to cap off a disease as “rare.” Add on top of that that there are 6,500 rare diseases (and that’s just the known ones), and you begin to appreciate the scope of the problem. 25 million Americans suffer from at least one known “rare disease” – that’s 1 in 12 people, 8.5% of the entire population. And just like that, it doesn’t seem so rare anymore.

As you all know by now, I have Ehlers-Danlos Syndrome, a “rare” connective tissue disorder that has been, and will be, the greatest trial of my life. The irony about EDS is that most doctors who actually treat it do not think it is a rare disease, and even the official estimates of how many people are affected have doubled every ten years since 1970. But because EDS is considered a rare disease, that means potentially millions of people are going undiagnosed, and those of us who are diagnosed have access to very limited research or medical advances.

There are two things I would like to ask each of you to consider. First and most importantly, if you have been suffering from global joint pain, tendon/ligament injuries, and/or muscle spasms, please look up the “Beighton Scale” and see if you might actually have EDS. If you think you do, don’t be scared – nothing’s changed about you from yesterday to today. But then check with your doctors to confirm your diagnosis, so that you and your doctors can help make sure that you get more appropriate treatment and can stay away from potentially harmful interventions.

Second, as I mentioned, there is very little research being done for rare diseases, which leaves me and so many of my friends with a rather bleak outlook. With 1 in 12 people having such a condition, surely you know and love at least one. Please look up organizations for any rare disease, and consider making a donation toward research for that condition. For me, it would be the Ehlers-Danlos National Foundation’s Center for Clinical Care & Research. It’s very important to spread awareness of rare diseases, but academic, clinical, and pharmaceutical research are where life-changing treatments begin. Please take this day to not just acknowledge the trials of people with rare diseases, but also to help us work toward a better future, and in some cases, a future at all.

Lastly, I want to give a shoutout to all of you with chronic conditions, physical or psychological, rare or not. I’ve said this before, but I have found that the people whom society has deemed to be the weakest are inevitably the strongest. You all have my respect and my love.

I also want to acknowledge all the caretakers out there, the people who keep us healthy, keep us laughing, and keep us loved.

And an extra special shoutout to my fellow advocates out there from around the globe, from all different causes, many of whom I’ve had the great privilege to know and work with over the years. Your passion, commitment, and bravery is a constant inspiration to me, and has kept me going on many a day.

Thank you so much for reading this.

Love,
Michael