If it wasn’t for the dance…

6835827644_3f89a867f5_zI tell a funny story: once I woke in my underwear sitting in the car, keys in hand, not knowing whether I had just returned from somewhere or had been getting ready to leave for somewhere The times I woke in the morning, ran for my first cigarette of the day, and wondered why the pack was near empty. The moment at the dinner table when my face fell into a plate of food like a television comedy trope. I tell the story with humor. I get laughs. Maybe they go to the doctor. Maybe they get checked out. Maybe they have saved themselves before it is too late.

One in four people have some type of sleep disorder. That is a ridiculous number. Many don’t even know they have a sleep disorder or are in vehement denial about their condition. (Or the doctors don’t listen to you).

Shortly after my daughter was born, on the verge of divorce, my wife convinced me to have a sleep study. Too exhausted to argue, I sat in a waiting room in my pajamas with several others also in their pajamas. They would not let us sleep. The room was so warm with outdated home and garden magazines no one wanted to read. We talked about what we did. We are all in our late twenties, early thirties and have failed at everything. I deliver pizzas and haven’t been able to stay in school ┬álong enough to actually finish.

I doze off. The lab technician comes and wakes me. He takes me to a room. He sits me in a chair that looks like something from a dentist’s office or a barbershop. He applies electrodes to my forehead and arms.

I am so sleepy. I nod off. The glue the technician uses smells so bad. I want to throw-up. I want to call my wife. I want to leave. And then, I’m not there. It is hard to describe the moment of a seizure. In the mind, it is like death. There is nothing, not even color, not even blackness which is what one thinks of in the absence of color. There is no sound. No thought. No being. Except you are there. Very small in the very back of a room, tucked away in a corner, and you have somehow forgotten yourself, and there is no time except the moment seems forever, but yet not exactly eternity.

When I wake, I am not in control. My body shakes. I have strawberry milkshake that I had earlier from Burger King all over my shirt, my pajama bottoms, someone holds me down in the chair, someone else screams, “He’s seizing!” and then I am in an ambulance. They want to put an IV in my arm, and I notice I’m calming explaining I don’t like needles. Then I am at the hospital. I do not know which one and no one will tell me no matter how many times I ask. I want a phone so I can call my wife and go home. I seem to watch all of this from a point of view outside of my body.

The experience scares me so much I do not return for another sleep study. Until years later in the car in my underwear with keys in my hand. This moment scares me more. My wife wants to know if I want her to stay while they hook me up to electrodes. She knows I’m frightened. I say no. I do not want her to see me without control.. I tell her to go home. And everything is fine. They hook me up. I sleep. They monitor me on computers. I wake in the morning. About a week later I receive a phone call. I am told I have sleep apnea, and one of the worse cases they have ever seen. The doctor suspects I’ve been dealing with the issue since at least high school.

Six years later I watch my daughter not be able to get out of bed. Nor can she fall asleep at night. I am helpless and can only wait for the doctors to try and figure out what is going on. I am adamant she has sleep apnea. She is so young though, and no one wants to believe me.

She is luckier than I. After a year of haggling with doctors, speaking with experts, dealing with inadequate medical supply companies, her problem is taken care of with a simple surgery–three weeks worth of a scratchy throat. Since the surgery, she has often commented she can’t figure out now how she dealt with all of that time before the surgery.

“If it wasn’t for dance… ”

 

BRIDGE THE GAP TO SUCCESS

CATA is a tuition free public college preparatory arts-centered charter school for 9th through 12 grade students. And they need your help!

Please check out their GoFundMe campaign. Even a five dollar donation is appreciative.

 

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Photo Credit

3 thoughts on “If it wasn’t for the dance…

  1. I hear you. My daughter has Non-24 Sleep/Wake Disorder (her natural day is 26-27 hours long). I’ve written about it a bit on my blog (use okapi in search).

    It was hell for her – and I finally figured it out, and my husband put a Jawbone on her wrist and documented her sleep – and when we finally found the specialist, he said, “Yup!”

    If we had discovered this (she’s probably had it since 16 when we started to worry about her), her life would have been different – but they had no working treatment then. Now they do, she’s much more functional, and just moved out. At 25.

    Sleep doctors are idiots.

    Some of them, anyway. All the ones she saw. Dance also kept her sane.

    Hope your daughter is okay.

    • Yes, she is fine!
      She wears me out. Ballet 3 to 5 times a week! She was in a production of Dracula this past October, which I went to go see. We got home super late, and at about 9am the next day, she was waking me up asking for a ride. “Where the heck do you want to go?? Aren’t you exhausted?”

      She had rehearsal for The Nutcracker.

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