Thursday, March 10

The Gray Area

At Tuesday's ballroom dance class, I was doing the cha-cha with Jonathan from "Sweet-N-Low." We were stepping back and forth in our little corner, trying to master a new move that involved me pivoting. I just couldn't get it down. There was something about the dynamics that I was missing. Upon finally accomplishing it, I felt such awesomeness! We performed the move a few times with success before stepping apart and taking a break.
Suddenly, things got fuzzy. A heavy heat settled over my brain. Everything became slow. I couldn't focus on what Jonathan or anyone else was saying. The room became stiff and stuffy; the air had been sucked out! My knees began to wobble; my strong legs turned into jelly left in the sun. Jonathan moved toward me to try the dance step again. He took my hands and stepped back in the first move, but I shook my head, staring intently at the ground.
"No, no...nonono," I remember saying.
"No?" Jonathan questioned.
"No..." I struggled to lift my head up to meet his face. "She" - I pointed at my friend Kat who had ran off to get me food - "she's gonna to get me s-s-stuff..."
"Stuff?"
"Um...uh..." My memory was blanking. The ability to form words was quickly declining. It was the beginning of the end. "Sugar!" I managed.
"You. Sit down. Here. Sit down," Jonathan said. (If you had read "Show of Splenda," it is obvious that JC has a full understanding of what I was feeling.)
I sat. And waited for normalcy to return...
This is an occurrence that happens a too regular basis!
* * * *
I tell this story because of something that happened before Spring Break that until now, I have been too angry about to write about it rationally. Even still, I might get a bit carried away if I get going.
For months, I have been waiting for my sugar to be low enough to get it tested at Western Carolina's Health Center. Finally that happened. And when I got there and my sugar was tested, I had a big surprise!!
My blood sugar, as weak and horrible as I felt, was at 88.
Normal is around 100.
...There was nothing wrong with my blood sugar.

However, no one could tell me what was actually wrong with me. I got pricked then questioned like a prisoner about my entire health history but still, I felt no one was actually listening to what I was saying. Whenever I said "this has been happening my whole life" or "I've experienced this since kindergarten," the nurse or physician would skip by it and I would catch a disgruntled frown on their faces. It was frustrating like "I'm telling you the truth. Why isn't this as important to you as it is to me? This is my life!!! I need help fixing it!"
After snacking on some Saltines and peanut butter and answering the never-ending, often repeating questions, I was given this as a diagnosis:
"You're a tall, skinny, 19-year-old female. Sometimes, people of your height, weight, and age can become hypersensitive to these kinds of things."
.......
WHAT?!?!!?

Are you saying that I nearly black out in dance class because I'm hypersensitive?
That I was wheeled through the Denver, Colorado airport in a wheelchair after throwing up for two days because I'm hypersensitive?
That I spent nearly every month vomiting in a toilet when I was between the ages of five and seven because I'm hypersensitive?
That I need other people to literally carry me up stairs or even down the hall after not eating for too long because I'm hypersensitive?!
....
At that point, the doctor was studying me. "You look like what I'm saying is bullcrap," she informed me as I continued to stare at her. "What's going through your mind?"
I explained that after everything I've been through, that just didn't seem to fit. "I just want to know what's wrong with me," I admitted.
And then she said something I will NEVER forget... something so insensitive and rude, something so out of place for the context we were in: a scared, young female student begging for answers and a supposedly professional doctor... her answered was: "Well, medicine isn't as black and white as we'd like it be."
...It was then that I stopped listening to anything else she had to say. And, I left the Health Center stressed and in tears.
* * * *
She's wrong. I know she's wrong! I can't tell you how or what is actually wrong with me, why I have these horrible, crippling spells. Maybe she's right about one thing; maybe it's not hypoglycemia. But it's more than hypersensitivity! Because I know my body and I am the only person who knows what I go through, and it's more than this! I was so frustrated, so disgusted by that woman's insensitivity, and so broken hearted that I didn't get any answers! It was worse than having my heart broken by a boy.
Dear physician who told me such things, that is my life that you're just throwing out the window with your insensitive words. The way you treated my situation was deplorable, and if I knew the right people to talk to... I would highly recommend your removal from the Health Center. Because of you, I feel horrible about myself, like I'm making up my own sickness in my head and that I'm a liar about what's happening to me. You have only fulfilled the theories and anecdotes that hospitals and health care facilities are horrible places!
* * * *
I will find out why my body reacts the way it does! And, I will find a cure, and I will get better!!! Because I REFUSE TO LIVE MY LIFE LIKE THIS!!!
However, I am extremely thankful that this is all that's wrong. While Jonathan and I have similarities, I do not have to inject myself with insulin every day nor have I experienced the hospital stay from Hell that he did when he was 12. And, I'm not taking pity on him. In the short time that I've known him, I can say I love Jonathan! That boy has more imagination, creativity, and energy than any person over the age of five that I've ever met. He has a spark of magic in him that cannot be replicated in just anybody. And, I bet part of the reason that spark is there is because of what he's been through. Even if we never talk again after ballroom class ends, I will be happy and proud to say that I knew someone that strong and brave and beautiful.
But I cannot forget two of my dearest who have been there every moment since I met them... Morgan and Chris. Chris, while callous and harsh in his opinions when I talk to him about my problems, is a sweet and gentle friend when I get sick. He never grows impatient or gets frustrated when I become difficult (believe me, a 140-something pound, 5' 10" girl is very difficult to handle when she can't stand on her own!) Chris carries on when I can't, and he has never treated me special or different. On the other hand, Morgan has been my special nutritionist trooper. He has taken me to special dietary appointments and held my hand when I can't hold open my eyes. He has loved and doted on me with lots of chocolate and peanut butter! He has been my inspiration to get better, to make sure I get sick less often. His patience and understanding has been invaluable to me, and it's what I love the most about him! To both of them, I am most thankful!
* * * *
This has been a very eye-opening experience. Since moving to Cullowhee, I have learned day by day how to efficiently care for myself and what does or does not work. There will still be moments when I crash. Realistically, there will always be moments when I crash throughout my life unless there is a cure for this "hypersensitivity" or whatever this is. I have also learned that the medical profession... they don't always have the answers. And sometimes, you have to come up with your own. As I try to move forward from my negative experience at the Health Center, I will always remember to trust in my own instincts. No one knows me like me.


1 comment:

Jonni said...

Lex, Sounds like hypoglycemia to me. How many times have you heard doctors say artificial sweeteners are bad for you and then the next moment they are not. Every scientist has his/her own idea and that is what keeps us in limbo. My Dad died when they said his cancer was under control and it couldn't be killing him. Wrong! It got to him, they just didn't find it. He knew, but had no proof. They just aren't finding your problem. You have to just do what make you feel well. I have had hypoglycemia spells and it is usually after eating and then not eating again for a long time. Sugar drops are scary! Trust your gut and be sure to always have a snack with you. You are right when you say you know yourself better than anyone. Stick with that and don't let anyone make you believe differently. Doctor are mere mortals and know nothing of angels like you. Hang in there!
Hugs & kisses oooxxx Jonni