Tuesday, August 24, 2010

Why I'm NOT writing a medical memoir

My father has suggested to me no fewer than twelve times that I write a memoir of my experiences. Memoirs, when published, tend to yield much better dividends than the poetry I usually write.

The thing is, my experiences were so horrible that I don't enjoy remembering them long enough to write about them. To this day I have nightmares about doctors, am irrationally afraid of people with Indian accents and am all-in-all, a bit PTSD-y.

I don't want to talk about it, I don't want to remember it and I certainly don't want to write about it.

End of Story.

That being said, as I look over my most recent bunch of poetry, all of it is about my experiences being diagnosed with EDS, that roughly 1 1/2 year period in my life that coincided with my final year of school.

Because poetry lets me use metaphor. And really, for such a volatile experience, only metaphor will do.

bluh.

I was scared out of my mind. Scared and also confused. Not too long after I was discharged (to walk the mile home sans cab voucher, since malingerers don't get vouchers) I climbed to the roof deck of my building with my friend. And cried. And cried. And cried.

As I talked to her I could never quite say what happened except through allusion, through metaphor and simile and suggestion.

Eventually, I might write a kind of memoir, but it won't be the kind you see on the New York Times bestseller lists.

7 comments:

Sudha said...

hi
I came to your blog via AT...I am glad I bumped into you....I am tackling aliments rnagin from severe depression, ligament damages, eye, shoulder and neck injuries...at 33 i live the life of a 80 year old...funny but true....I am so not in sync wiht life anhymore...you know one thing...your dad is right...you should write a memoir...you are a strong woman...goda bless you and hope he gives you all the strength in the world to work you way towards complete recovery...im sorry im very teary eyed right now...excuse me for my typos )

Yvette said...

Sudha, thanks for coming by. I know what it feels like to have a body older than you are. Maybe I will write a memoir, after some of the hurt goes away. Thank you so much for your kind wishes and I pray the same for you.

Chronically Katie said...

Wow. That's absolutely horrible that you had to walk home after being discharged. Sometimes it seems like people in the medical community are so quick to judge. Its like they think inside their own little specialty and if they can't figure it out right away then its all in your head. I have EDS too and I wasn't diagnosed until I was 19. I've had three doctors and one psychologist tell me that I was either making it up for attention or its was a psychological issue that was manifesting itself physical. The worst was when my mom was talk that she had Munchausen by Proxy. No one should have to go through a medical issue and be told you're crazy.

Yvette said...

Katie, you're exactly right. Once one hospital/doctor had gotten on the it's just anxiety/stress train, it took months before a doctor actually took the time to listen to the words that were coming out of my mouth. It's nuts they accused your mother like that. At 29, I guess I was a little old for Munchausen's by Proxy, but one rheumatologist did accuse my mom of abusing me as child (and thus causing my current problems.)

It's reassuring in a twisted way that so many people with EDS have these same experiences. It's such a shame too. No one should be sick and have to have their guard up against the people who are supposed to be helping. Doctors wield far too much power for them to take it in any way lightly.

brilliantmindbrokenbody said...

I was very, very lucky when I got diagnosed - while the process of going doctor to doctor was frustrating and daunting, other than the first asshole geneticist I saw, I've been treated very well by my doctors.

The first geneticist, though...ugh, I wanted to throw things at him. He didn't listen to me, and he had the nerve to tell me that I shouldn't complain that I'm more flexible now than I was as a kid...nevermind the fact that the increase leads to all kinds of joint injuries. He also didn't want to talk about all of the things that I'd thought were connected - the IBS, the functional bladder disorder, the delicate skin, the easy bruising, so on. Talked right over me. His report probably screwed over my first application for disability. I'm going to be applying again. ...have you thought about applying for disability? I suspect your POTS is bad enough that you might get it, and then you could focus on writing and publishing poetry.

Speaking of poetry...you may not want to do a memoir, but I've been kind of off and on working on a book about becoming disabled as a young adult (late teens to late twenties or early thirties, I think). I'd love to look at some of your poetry if you'd be interested in having it included.

~Kali

Yvette said...

Kali, it's interesting, but I already have disability due to my 'treatment-refractory bipolar disorder' which in my opinion was dysautonomia in one of its many disguises. It's good and bad. Bad because I was young and thus get a very small monthly check.

Good because, insurance! If I didn't have insurance when the ticking time bomb that was my autonomic nervous system finally went off, I'd be in even direr financial straits.

I think my problem with doctors came about because I presented with a constellation of symptoms that seemed to come from nowhere. I had perfectly normal bloodwork...but I'd vomit up every other meal. My heart rate was 140 lying flat on my back. But there was nothing wrong with my heart. It didn't take long for my doctors' frustration to turn into attacks on me.

I was accused of using drugs, of making myself sick somehow, of being autistic (at the ripe old age of 28.) They couldn't stand the sight of my face by the end. I was given the choice of voluntarily committing myself (and thus admitting that I was making myself ill on purpose) or leaving the hospital. So I left.

They were just too ignorant of EDS to know it presented with my precise symptoms. Joint pain without inflammation and autonomic disruption. Not only that, but they were ignorant of POTS as well. Rather than say, "I don't know." They just told themselves, that no one with so many symptoms could have such perfectly normal test results. Therefore, I must be healthy no matter what evidence existed to the contrary.

In _The Weight of Glory_ C.S. Lewis discusses what he calls "the doglike mind." That is the ability to see things only independently and not what they mean all together.

The ability to apprehend every single fact, but none of the meaning. Just like a dog who sniffs at your finger when your point at some food.

Thank you for asking, I would be honored. Can I ask about the format? Is it a series of guest works, or more you'll be writing the bulk of the book with contributions from others here and there? But yes, yes, yes, I'm totally interested.

Damn, this comment is long.

brilliantmindbrokenbody said...

Well, at this point the intended format is a book written mostly by me, but telling more than just my story - telling our stories, we young people who became disabled at that cusp of adulthood.

So I intend to use quotes and if possible works of art like images and poetry. I think that for a lot of people, it's easier to communicate our sort of experience through a less literal form. Me, well, I play both sides. I think I'm a better storyteller than I am an artist, though.

~Kali