I have been ill in various capacities for the past eight years. I was a rather healthy child, save for a brief interruption after a bike accident when I was seven. But, at the age of eleven, I was the victim of
malpractice. You can read the whole story by clicking that link, but suffice it to say, an arrogant doctor made one mistake – told one lie – and so far I’ve lost eight years of my life.
The past few weeks, I’ve been having difficulties yet again. This time, I don’t know if my health problems are directly related to the malpractice incident, but it certainly seems that way. At least, it does emotionally, because the pain never seems to stop. It just changes. Lately, it’s been this incessant problem with my gall bladder. Or, at least, that’s what they think the problem is.
It’s been eating away at me for a while, the pain and the emotional consequences thereof. Because of the pain in my abdomen, I haven’t been eating very much. I’m not typically that fond of food in general, save for my infamous obsession with root beer and certain forms of bread, but lately it’s been overriding every other function of my brain. I’ve been so hungry lately that I can’t stop thinking about food. Unfortunately, the particular foods my brain is concentrating on, craving horribly, are all of the foods I cannot have: chocolate cake, cheesecake, chocolate chip cookies, filet mignon, cheeseburgers, potato chips. Up until today, it was an irritation, an annoyance at best. But after two weeks of eating scrambled eggs and toast, toast and scrambled eggs, with the occasional sub sandwich for flavor, I lost it today.
All afternoon I couldn’t stop going over in my head how exhausting it is to be tired all the time, to feel sick, to have every inch of your body in constant pain. I walked around Nordstrom today, wishing that for just one day I could go without some part of my body aching, throbbing, stabbing, stinging, or cramping. I can’t remember what it felt like as a child to be hyper and bounce around, without caving into the pain after only a few short minutes.
Then came the hunger. I haven’t been able to eat much at one time, which means I find myself starving only twenty minutes after eating small portions. I tend to be too busy to stop every twenty minutes and find something else non-threatening to eat, so I’ve been going hungry. By the time I had finished walking around Nordstrom and had made the purchases I had intended to make, I walked out the door through which I had entered, and saw that the sky had turned from a bright blue to a dark gray, and rain was coming down in torrents.
I got soaked as I went out to my car, which was only a few yards away in the first available handicapped parking space. It seemed as if the weather had changed with my mood; optimistic one minute, and moments later, dark and tear-stricken.
I made it home without crying. Mike showed up moments later and we decided to go off to Wegman’s to hopefully satisfy my sweet-tooth by buying a bucket of meringue cookies. I decided those would be safe, since they didn’t have any fat in them whatsoever, and that was at least something made out of eggs that was sweet for a change. Unfortunately, even Wegman’s was hell-bent on reminding me that I was being denied something I wanted because my body was in a bad mood.
Everywhere I turned, someone was holding a cheesecake, or a decadent chocolate ganache, or a bag of cookies, or a chocolate bar. The odd thing was, everyone seemed to be holding these tempting concoctions up at eye-level. Literally, as I turned out of the frozen foods department, I almost ran smack-dab into a cherry-coated cheesecake that a woman was holding aloft on her hand. One more step and my face would have been coated in delectableness.
I couldn’t take it, and I didn’t know why. I didn’t even normally like cherry cheesecake, but just then it looked like the most heavenly edible thing on the planet. I wanted it, but I couldn’t have it. I wanted it so badly I wanted to throw a tantrum right there in the express line and cry and beg until someone gave me even the tiniest taste of cheesecake.
But I didn’t. I kept it in and I tried to pine once more for meringue cookies. But Wegman’s wouldn’t let me have that either – for once, they didn’t have any in stock. I had to go home alone and dejected, utterly cookieless.
Mike slept in the car on the way home. As I drove through the pouring rain, my thoughts returned to the frustration of being ill for so many years in a row. The toe, the brain infection, the ulcers, the irritable bowel, the Chiari I Malformation of my brainstem, the scoliosis, the constant and unbearable headaches, the poor circulation, the tumors, the operations I’ve been through, the operations to come, the forgetfulness, the grief, the injustice, the absolute pain. Everything I’d missed out on, everything that I was cheated out of, because of one man’s lie.
It had never been tangible to me before. There was never anything that had been taken away from me that I could see, smell, touch, and taste. I didn’t understand the physicality of it at the time, but I felt it. Driving through the raindrops, I began to cry as I reached my house. It felt ridiculous, crying because I couldn’t have a slice of cheesecake, or a bit of meat; crying because I felt hungry. I felt childish, but the loss seemed so much bigger. It wasn’t just about a bit of food anymore, it was the grief of being so ill for so long. It was feeling as if I was being denied something so important and yet so simple as food.
After a day of holding back, I finally cried. Repeating over and over again, I kept asking myself if it would ever end, and I honestly don’t know. But at least I understand the pain – this is the first time in eight years that I’m being consistently deprived of something tangible. It’s a physical manifestation of everything I’ve lost these past few years, being as sick as I’ve been. Something that I can see, touch, taste, and smell, and I can no longer have it. That is, until they can find a cure. Will it ever end? That’s what it came down to. Will it ever end? Will they ever fix what’s broken in me? How can they, if they don’t even know what it is?
I know this sounds depressing, and it is. Have I lost hope? I don’t think so. Am I distressed and frustrated? Yes. Do I need a vacation? Yes. But more than anything, I just need to feel normal again. I need to live a day of my life without some form of physical pain. I’m still accomplishing a lot in spite of it, but I’m not accomplishing as much as I know I should be.
At least, in some sense, I believe all of this has given me a greater perspective on the big picture. I think I have a better understanding of what it’s like to be in pain, a whole lot of pain, and how easy it can be to lose hope. Giving that frustration a tangible manifestation, such as all of the food I can no longer eat and being hungry for so long, it puts a perspective on pain that I hadn’t considered before. It’s symbolic of everything else in life that I’ve missed out on, skipped, or somehow lost in the process. I know I’ll never get that back, and knowing that it all began with another person’s mistake, another person’s lie, it makes it so much harder. Of course, maybe it helps that I have someone to blame, but on the other hand, I don’t have justice either. He got away with it, and I’m paying for his poor judgment. Every day I pay.
I’ve received a lot of emails from people lately, asking me questions about how to get prosthetic toes or how to find ways to cope with disfigurement. They search on google and find my blog, find my stories of how I got a prosthetic toe, or how I deal with scoliosis, or tumors, or what have you. At least, in some way, I am able to help because I’ve been there before. Maybe that’s what it’s all about in the end.
