I'm fine

I’m fine. Those are usually the first words out of my mouth in the morning, because it is always the first question of my day. My inquiring and concerned wife never really believes me, but she respectfully asks me just the same. She monitors me intently for at least fifteen minutes every morning before she decides if I am actually fine and she can begin to move about her day or if I am – in her words – lying like a stubborn-ass because I must think that she is an idiot. But, I’m fine.

Being “fine” is subjective and really means that there is nothing out of the ordinary and no reason for alarm. Take for example seizures. Seizures seem to be a daily hobby of mine; I have had one since typing this (not a joke). They seem to be brought on by a multiple of activities that include any type of straining, intent concentration, anxiety, commotion, physical exertion, etc… Unless I get it under control, I will never be able to vigorously wash in exciting places ever again. We have tried (doctors and I) several seizure medications with varying and terrible results. The first made me so dizzy that I kept falling and smacking my head – not a good idea with a brain tumor and squishy skull. The second one gave me Stephen Johnson’s Syndrome (SJS) – an allergic reaction so severe that it carries a person’s full name (In case you are wondering, SJS causes all of your skin to burn and slough off your face and body). Then there was this last medication that caused me to pass out from internal bleeding and put me back into the hospital with a possible heart condition and a massively annoying heart monitor that I am currently wearing at this moment. I have since decided to (at least for the time being) sustain from the meds and deal with the seizures. The point being that if I have had multiple seizures today, but have not been hospitalized or suffered some maddening, painful or embarrassing reactions, I’m fine.

My normal everyday problems are fairly typical of someone with a brain tumor. They include falling, seizures, headaches, massive ankle, knee, hip and back pain caused from walking on my big toe alone (the only foot muscle in play at this point), stomach issues (also caused from neural paralysis), a weakened immune system and speech and cognitive issues. I am forced on a regular basis to discuss all of these exciting components of my life with my doctors, wife, kids and mom. It is sometimes a difficult thing to bury the emotions of previous conversations ending in a loved one crying over you, in order to allow others in a public or family function the comfort of ignorance. Talking continuously about an illness is tiring and painful. So, when I see you and you ask if I am okay, I’m going to say, “Yeah, I’m fine.”

My condition is not without irony though. Despite the fact that I feel like hell and have the athletic ability of Stephen Hawkins, I look better than I did in my 20’s. Paradoxically I am terminally ill, physically handicapped and at the same time, healthier than I have ever been before. I eat right and workout every day. My workouts are an hour long, consisting of working hard for a few minutes and then waiting for the dizziness to pass, before working for a few minutes again (a long and boring process). This results in a bittersweet outcome. On the one hand, I am proud of my accomplishments of becoming healthy and in shape while being sick (I have worked my ass off). But, on the other hand, some people are beginning to question the authenticity of my illness. It is like they need proof; an x-ray, a doctor’s note, a small film of me having a seizure while on the toilet and screaming for help. I cannot tell you how much it sucks to have someone look at you like you are a liar, like you are not allowed to look healthy and still be unemployed. It’s as if all of my hard work and sacrifices to improve my health are being turned on me. I am just trying to get to a point where I can truly say, “I’m fine.”

So, please understand that my situation is extremely personal, often times embarrassing and most of the time depressing as well. I am not trying to be rude, off putting or misleading. When you are sick there is really a fine line between being whiney and being aloof.  If I talk about being sick too much, people think that I am seeking attention. If I do not talk about it that much, people think that I am keeping something from them or that it is really not an issue anymore (depending on the person’s perceptions of me). Honestly, this post is whiney as hell and I should have left it where I started it. Just forget all this and know that, “I’m fine.”