Look who’s coming out, but it isn’t what you think: Part I

The hardest part about coming out has got to be coming up with a good opening line. I haven’t got one though. So I’ll give it to you straight.

I’m not gay, but I could be dying.

As fas I know, not imminently though. I’ve known for years now that certain things in my body aren’t working properly – like my heart and a part of my brain called the autonomic nervous system, and because we all need our hearts and autonomic nervous systems to keep things running smoothly, I do have a potentially life-threatening condition.

Well, technically, I have two – Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome.

You look unsettled. Don’t worry, a lot of people have that reaction. You should see them when they try to shake my hand and find that it’s already shaking. They search my face for nervousness, fear, or an explanation of why meeting them would horrify me so badly. I tell them I have some medical conditions that can make my hands tremble. They look blank. Then I tell them how awesome it is – all my drinks are shakes and all of my toothbrushes are extra sonic. They laugh uncertainly.

When my son was six or seven months old we were in an accident that totalled the car and damaged my right knee. My husband called me in the ER and when I picked up the phone he said, “Look, if you want me to spend more time with you, there are better ways of letting me know.” We laughed. Then he came and pushed my wheelchair around the ER in laps until the baby fell asleep and we went home and lived happily ever after.

Somewhere in the fairy tale our baby prince was diagnosed with autism, but that’s another story. While I would be hanging out the baby prince’s baby laundry, my arms would get very tired. Then we had a baby princess and if I stood up too quickly I would pass out. A second princess was born and by then my muscles cramped and twitched and hurt for days at a time. At present, I own the world’s heaviest smart phone, use both arms to carry a two-ton, 13-inch laptop, and have noted that carpenters don’t make sofas like they used to. They’re hard to get out of, and on top of that – they make this huge WHOOSH and creak when I fall – errr – daintily settle into them.

But we’ve settled. I have a full-time housekeeper and the driver takes the kids to and from school. Not because I’m the Queen, but because the last time I mopped the kitchen my legs hurt for three days. Chronic illness does have its perks – I can’t remember the last time I cleaned a bathroom. Oh, and I have country-wide parking privileges. Technically it’s called disabled parking, but I prefer to call it VIP.
Sounds fair enough.

When I walk – because I can – slowly out of my car, people specially glare at me, wondering why I’m parking in a disabled spot when I’m so obviously not in a wheelchair. My husband says they’re just jealous, but once upon a time I too glared at people who parked in disabled spots and then skipped out of their luxury sports cars to the mall. If you gave me a little red convertible, I’d probably skip too, but just once, and then I would limp for a few days before sulkily admitting that I probably shouldn’t skip anymore.

I don’t skip. Also I don’t do stairs. Or whistle.

The muscles of my mouth won’t. It’s a nerve thing, I think. I would never have known, since I’m not the whistling type, but I felt oddly insulted when my neurologist asked me if I could whistle. “Of course I can!” I huffed, and pursed my lips together to produce an indignant ffffffffffft.
He waited. I tried again. Then he made some notes and left me to mourn.

For a while I really did mourn. And by a while, I mean a good year or so. But the Kübler-Ross stages of grief: denial, anger, bargaining, depression and acceptance, are overrated, so I made up my own. Instead of denial, I started with terror for my children’s future, followed by appreciating every minute details of their hands, faces, fingers, and words. Then, I remembered what an idiot I’ve been for an overwhelming majority of my sentient life, and I began to beg for forgiveness before Allah called me for account.

There was never room for denial, as my creeping disability was constantly present, and finally getting a diagnosis was reassurance that I was not, indeed, crazy. Because weakness, fatigue, and pain are invisible, and POTS is hard to diagnose, I was told many times that my symptoms were in my head. Not that I was making them up – but that not being able to manage my stress was taking a toll on my body. When my eye twitched for a week, I was told to relax and consider yoga.

It finally took a biopsy to confirm that my muscles were indeed atrophying. Before that, it took X-rays, CT scans, lab tests, MRIs, and genetic testing to rule out nearly every other option before finally coming to POTS and Ehlers-Danlos. It also took several modern forms of torture – clinically known as EMGs and EEGs. In an EMG, they stab a needle an inch or two into your muscle and ask you to flex while they actually listen for muscle recruitment and response. I would like you to consider how big a needle feels to have a microphone in it.

In an EEG they jab the prongs of a vicious, hospital-grade taser into your face, arms, and legs and then shock you with it. There is also a good ole fashioned tape measure involved. The goal is to measure the speed at which your nerves conduct the shock along major pathways, and the tape measure is used to count how many inches you jump off the chair while they are doing so. Just kidding. They measure the length of your limbs in order to calculate the speed at which the shock traversed said distance. So not only is it torture, it’s also math. (If an electrical signal leaves the shoulder station at 4:15 pm travelling 30 mph, and the distance to the wrist is 60 centimeters, how hard will you punch the neurologist when it gets there?)

Are you laughing yet? Good, keep laughing. Because now I’m going to be serious.

This piece originally appeared at muslimmatters.org

Here’s Part II of this piece.