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.



Show of Splenda

This afternoon, I went to see a show that was unbelievable, completely original, extraordinary, and more moving than any show I've seen. It was called "Sweet-N-Low: The True Story of One Diabetic's Journey to Keep Spirits High and Sugars Low."

A classmate of mine, Jonathan, got up on stage with two folding chairs, a table, and a red bar stool and told his story of being diagnosed with Type 1 diabetes at the age of 12 and so on. I watched completely enthralled as he reenacted every step of the way starting with a hilarious and warm tale of traveling to Disney World to the broken, heartbreaking sobs of a 12-year-old boy begging nurses to stop taking his blood to a young adult managing and living life to the fullest! Never have I sat through an entire show with tears in my eyes throughout it all from either laughter or sadness.

Bright spot number 1: It wasn't told by a doctor. It wasn't told by a therapist or dietitian. It was told by someone who had been there. Someone who has acting talent that would blow 15-year-old Leonardo DiCaprio out of the water! Instead of someone preaching to me, lecturing me about the ups and downs of diabetes, the audience and myself were shown this "journey" through the emotions of an actor.

Bright spot number 2: It was real. Jonathan didn't sugarcoat his self pity or his pain. He didn't cut out the parts that would make some people think he was ungrateful. Jonathan laid it all out there and at the same time didn't ask for anyone's pity or for them to be sad for him. I can't speak for him, but I can imagine that he wanted people to come along for the ride and go through the experience with him as a means of understanding. I can't tell you how many people have talked to me differently or done the "Ohmigosh, are you allowed to eat this? Are you sure? Maybe I should cut it in half..." bit because I have hypoglycemia. Incurable and as difficult as hypoglycemia is, I cannot imagine (with my great fear of needles) how much courage one must have to give themselves insulin shots. And through "Sweet-N-Low," I was able to fully grasp the other side of the scale that is someone with diabetes and come to understand how it is for them.

Bright spot number 3: I got to sit directly behind Jonathan's mom. I don't know this woman, but I know she and her husband must have been exceptionally brave and strong through the whole process beginning with learning that their son had an incurable, potentially fatal disease. I could feel the pride rolling off of her as her son continued to speak. It was incredible! For me, seeing how proud she was of her son and how much love she had for him was as remarkable as the show itself.

I'm not going to steal Jonathan's thunder and talk about my own struggles with hypoglycemia. I'll just say that even though it was diabetes, it was close enough that the performance rocked my world and gave me such hope that maybe one day I won't have to live like this either because someone found a cure or I will have the strength and courage like Jonathan to adapt to the lifestyle I was born with.

I truly wish that the show had more dates and that every Western Carolina student would go see it. I wish my mom had been able to see it. I wish Kate and my father had seen it. I hope it continues ("Sweet-N-Low" has already spent time touring over the summer) to grow and becomes something people can see not only nationally but globally so everyone will understand like I came to today. It was truly remarkable.