On Criticism

The rain is pouring in Los Angeles. I am guessing the fires are now fully contained. I am bundled up in my robe writing, as I have been for days now. I am completely sick of myself.

Then, this comment made me laugh until I cried.

I used to get upset when I got nasty Facebooking, but no longer. That’s just the internet. People will take shots at you no matter what you do or who you are. It is truly unavoidable.

The staff here at LessFlexible (that’s just me) do our best to represent our mission of talking about me, since I pay the SquareSpace hosting fee and all.

SquareSpace is awesome, by the way.

I am not available to be anyone’s punching bag. If you want to criticize me, you must earn the right, say, by being the person who signs my paychecks. Or in a relationship IRL with me. Not a shallow IRL relationship, either. In that case, I would politely ignore you because we don’t know each other well enough to go deep.

For anyone not intimately part of my life:

All criticisms will be taken as compliments. Thank you.

If someone projects things onto my blog that are not there, what can I do.

I do understand the tremendous stress of living chronic illness, especially Ehlers-Danlos. (sigh) Extreme unfairness and suffering can make someone extrapunitive who otherwise might not be.

I am flattered by the deep dive this commenter took into my blog. She also hit on something correct: I am uncomfortable with the post I wrote about The Mighty. Was it too harsh?

At one point, I almost took it down, especially because someone I love and adore, Ashanti di Silva, is the Rare Disease Editor of The Mighty. The last time I saw Ashanti, I wanted to die of embarrassment.

But I have left it up, because I think I made some good points. Reading The Mighty made me feel so much worse about my life.

It’s like this: I get my news from the Los Angeles Times, the New York Times, the Wall Street Journal and the BBC. Not Facebook. Facebook is not a curated representation of news or reality. It is highly distorted and deliberately upsetting. I enjoy the dog pics and staying in touch with friends. That’s where my attention stops.

I want to hear about Ehlers-Danlos and chronic illness from appropriate sources.

People are getting stuff done! The Ehlers-Danlos Society is doing so much important work that will improve our lives. There is the amazing rare disease community out there. We all face the same problems, and there are 350 million of us worldwide.

There are approximately 7,000 rare diseases, 95% of which do not have an FDA approved therapy because no one understands what these diseases even are.

This is why I was so infuriated by the study the BMJ published. What a waste of time and research dollars. We don’t even know what hEDS is. We do know that there are many very rare types of EDS. That study did not even address that.

There are so many better things that could be studied:

• What happens to a chiari decompression years later?

• Did that joint stabilization surgery help over time?

• Going on TPN, what happens in the long run?

• How are we getting labral hip tears, so we can avoid them?

• Does excessive use of antihistamines make allergic reactions stronger?

The doctors that speak at EDS events are commenting on how they treat patients and outcomes they see. What if we had real studies on what works best for us?

May I recommend Dr. David Fajgenbaum’s book Chasing My Cure.

Dr. Fajgenbaum is the hero of Castelman Disease and my hero❤️, for pioneering a new way to progress understanding and treatment of rare disease.

David Fajgenbaum entered medical school on a quest to cure cancer, the disease that claimed his mother's life. He didn't know that his medical training would ultimately serve a mission to cure himself. At 25, Fajgenbaum was diagnosed with idiopathic multicentric Castleman disease (iMCD), a disease that has brought him to the brink of death five times.

Terror vs Criticism

The hardest single thing I’ve ever done was getting wheeled fully conscious, undrugged into the operating room so that I could arrange myself properly on pillows. Sheer terror! That operating table is very hard. Surgeons shoving my flimsy, unconscious body around will cause rebound spasming and pain that I cannot describe. I have to get my spine supported before going under. Staying out of pain is my priority. Criticism? Whatever. I’m not sure I like myself all that much so why would I care if you do.

LessFlexible vs Me

LessFlexible is not the person I am if we met at a cocktail party.

A good conversation in real life is not a one-way me-me-me monologue, even though many people commit that atrocity IRL. If you subject me to that I will duck out of it. I love a good discussion, and I hope you are up for it. To me, there is no greater offense than being boring. What is more boring than agreeing?

Feelings Hurt

I started this blog many years ago. I took down around 2012 because so many people wrote to me and told me their sad stories of EDS suffering. I couldn’t take the heartbreak and have any energy left to work on my own health. I advise the chronically ill to be selfish with your energy. Use all you can to improve yourself physically. Don’t let anyone drain you.

At the 2019 Ehlers-Danlos Learning Conference, they showed a memorial reel. I know EDS faces, who has hEDS and who has vEDS, so I could make a good guess as to who had committed suicide and who had died of a rupture. It was too much. I got on a plane and went home early. There was some alcohol invovled between those two events because I had to go standby. F*ck feelings!

Hmmmm. Maybe the problem is that I am just too sensitive for The Mighty. I hate feelings. I go to therapy and complain about having them. Could they just go away!

Maintaining Dignity

In Monet’s bedroom, Giverny, France.

I went through the worst years of my disability alone, before there was Facebook.

I was very lucky that there was a local EDS support group that met every two months at Sherman Oaks Hospital, if I remember that right. That is where I got EDS information and where I met other people like me. It was a lot of complaining, so I skipped sometimes.

Back then, the Ehlers-Danlos National Foundation held a learning conference every two years. It was too expensive to record it and share the information. I always wanted to attend, but I was too sick to get on a plane or sit through a conference. This is why the Ehlers-Danlos Society doesn’t have enough patients enrolled in the HEDGE Study. Patients are too sick to go to recruitment events. This is a major obstacle in studying any rare disease.

I kept my illness to myself. I was very isolated. There was no venting my anguish, except in private. Nobody knew how sick I was. This was less stressful, more dignified and allowed me to enjoy other people, which is a wonderful distraction from suffering. So was all that morphine and Vicodin.

I am from a different generation. One before self-esteem and feelings.

I had Mr. Pennington.

I had Dr. Plance, who kept me entertained and laughing and never gave up on trying to help me. He and I never ever discussed that I was hopeless. It was so obvious, it didn’t need to be said. It would have been boring, anyway.

Here on my me-me-me blog, describing what I have been through, I have come to terms, at least a little.

I always thought if my wildest dream came true and I got well, I would only be happy. That is not what happened. It’s been very complicated.

I write about my suffering and try to make it, well, beautiful.

So then my suffering is transformed into

Art.

Since maybe there is no such thing as meaning in suffering and life is horribly unfair.

Yes, I am an artiste.

Monet’s back yard.