I was sitting in a doctor’s office this morning and praying that they would hurry up so I could make my next doctor’s appointment. And while doing this silently, my phone rang reminding me that I have a doctor’s appointment tomorrow. I have no idea how people with jobs do it; this constant and steady barrage of appointments that each take time and result in different conclusions.
I have learned in the many years that I have lived on this life that we can and do in fact, categorize people. Whether you are one of those die hard discriminatory individuals, or if you simply try to get along with everyone, people are put into categories. In your mind, in your news, in the world surrounding you. Most categorization isn’t done out of hatred but rather an unconscious need to satisfy a point. When it comes to being sick, luckily, there are only two categories: those who are and those who aren’t.
There is no middle ground when it comes to being sick. And there is no way to define oneself without this subtitle when you are sick. I know of personal moments of absolute beauty, happiness, perfect sunshine, that are underlined by the fact that I am sick. I can watch my children dance and laugh and acknowledge that while I am not unhappy or feeling sick, I am in fact sick.
And even better, my sicknesses range from the mental to the physical. I have conditions, symptoms, syndromes, diseases and disorders. Personally, I am just grateful that my toes are all in working order at this point. No one warned me growing up that when a doctor claims that you have conditions,symptoms, syndromes, diseases and disorders that they come not in a package but a trickle throughout your life. Sometimes it seems just when I get all the conditions, symptoms, syndromes, diseases and disorders in order, a doctor comes along to celebrate the wonderful news that I have something new to take a pill for. If I were ever to post a picture you could see some of the issues I battle with, but most of my problems lie deep within a body that simply doesn’t work.
I, and more importantly my doctors, do not have an explanation for why my organs and systems don’t seem to function. No one can help me to understand why the moment they discover another problem to solve my life gets just that much more difficult. No one, anywhere, can explain the phenomenal bad luck I got when it comes to my health.
I would enjoy being able to tell you that my conditions, symptoms, syndromes, diseases and disorders were because I shared a dirty needle. I would enjoy being able to explain my conditions, symptoms, syndromes, diseases and disorders as a result of my family history, or because I went to some foreign country and picked up a bug. But the truth is, the health that I have, the health that I suffer is nothing but a wicked series of diagnosis that no one can explain.
In my bathroom I have a picture that states, “God wouldn’t give you more than you can handle” (or something like that). I have started to hate that saying for no other reason than it gives me someone to blame. And I don’t think health is something that can be blamed on another; you are either not sick or you are. It isn’t any more complicated than that.
The majority of people in this world do not know what it is like to understand that one’s own body doesn’t work. People get sick from the flu, from strep, from the various bacteria and viruses that are so prevalent in this world. This isn’t the sick that I am talking about; if you do get sick from a cold often, I understand your frustration, but I am sorry to say that isn’t what is being said here.
My conditions, symptoms, syndromes, diseases and disorders include the ever present bipolar disorder, a rather intense form of anxiety disorders, Asperger disorder, hypothyroidism, a condition that causes my teeth to literally weaken themselves to the point that they fall out of my gums without any strain, IBS, and one or two more that I am sure I am forgetting. The problem is not in cataloging all the problems, the problem is acknowledging and continually proactively solving the symptoms that come with these diseases.
In my book I acknowledged that one of the hardest parts of any disease is the cure. Often the cure requires medication and there isn’t a pill in this world that does’t have a side effect. So when you take a handful of medications each day, you get just as many side effects. Dizziness, blurred vision, depression, tiredness, constipation, sexual problems, acne, monthly periods that last for weeks, and the lack of any desire to eat anything. I experience all these side effects. Everyday. All day. And while I can admit that some days the side effects seem almost manageable, one has to wonder how I leave the house at all.
I have always felt that I have the right to complain simply because these conditions, symptoms, syndromes, diseases and disorders, literally rule my life and everything in it. My friends, my responsibilities, my luck, my experiences, even my greatest triumphs are tied into these medical words that define me. And what is worse is there is no cure to any of it. Try taking IBS medicine with medicine that controls your mental illness; it ain’t pretty. And the only reason I am not in a hospital on suicide watch is I was able to understand and know what was happening. I got lucky and was able to learn to mitigate some of the damage. But it was a close one.
The reason I am going off on my own body today, which by the way neither makes me feel better nor will help me in anyway, is because there are days that the voices inside of me are screaming so loud at the unfairness of it all. (Yeah, I know life is unfair. Thanks.) I look at the ten cousins that I have, and the one sister who is most closely related to me, and wonder why they didn’t get these conditions? Why didn’t they get punished and instead I did? Why am I the only one screaming in agony while they have jobs and lives that are beyond my ability to ever hold on to? They come from the same bloodline.
I think the hardest part about having a disease isn’t the disease. And while the side effects of the medicines are up there, one of the most difficult parts lies much closer to our hearts. The desperate need to understand why. The desperate desire to look in the mirror and not see who and what I am, but who and what I can’t be. To understand with grace and dignity why I am punished when so many in this world are not. Why is the flesh and blood most tied to my own have no conditions, symptoms, syndromes, diseases and disorders? Why does she exist in this same world, but live a totally different life?
Because I guarantee, not once has she looked at herself and wondered about the diseases, the sicknesses that ravage her body. I guarantee that most people take for granted that feeling of freedom that comes with the perfection of health. For me, everything is underlined with the failure of the body someone designed for me. For me, everything revolves around the knowledge that no matter what I do or where I go, there is no cure for any of the problems I suffer.
And I can’t complain. And I can’t often state the words that I am suffering. Mostly because the concept of suffering from a disease is only seen through the world of that disease but also because no matter how hard I cry, nothing will change a thing. Sickness runs in my bloodstream. And there is no cure for it.
So I will continue going to these doctors, and continue to speak openly and honestly about the struggle. And then I will go home and continue to try and find a way to be present without the specter of sickness pouring from my veins. It is all I can do. And maybe, if I am really lucky, after this life there will be a world where I can finally understand and know the freedom so many take for granted.