I should start out by saying that I know I am feeling sorry for myself. I am fully endowed with the knowledge that I am wallowing.
I am also saying that writing it out might help.
I have MS.
Fucking multiple sclerosis.
And all I can think is… What? That is NOT me. I am not sick. I am not a fragile thing. I am a Hall. I am thick and sturdy. I come from sturdy stock. I am a Hall.
And yet, last July, when my MRI results came back and my doctor called me in for an emergency follow-up, I felt for the first time that for all my flustering… I am weak. I am paper-thin.
I am hollow.
I was thinking, “at last, it has come true.” My deepest fear suddenly this tangible reality. Tangible is really a misnomer because I actually couldn’t feel anything on my right side.
Well now it is November. I’ve started medication for a disease I don’t believe I have. I still can’t get over it. How did this happen to me.?
Statistically speaking though, I had all the right variables, but, this disease is not me. How could it be? It is completely incongruous with my self-identity.
And now I find myself reading about auto-immune disorders.
What is being done for a cure?
What kind of things should I eat?
What will exacerbate my symptoms?
What kind of time frame am I looking at? Am I staring down a M16 assault barrel of disability?
Mostly, what am I going to do?
Lets go back. I’ve started medication for a disease I don’t believe in the possibility of me having. It is truly awful. I also know it would be awful to not have the option to have it.
Last night my boyfriend injected me with 44 mg of a beta-interferon. If you’re not familiar with what that is, it’s basically a thimble size dose of the flu. My boyfriend injected it for me because I’ve basically lost all mind control and am no longer able to summon the will power to do it myself. I have literally spent hours, hours, and hours staring down this chunky auto-injector.
This auto-injector is a rather terrifying hunk of plastic and springs with a tiny sliver of a needle. The needle projects like Pretador’s tongue upon the click of a button.
It is the Bane to my Batman. It has broke the backbone of my will.
Before, I used to think that I had relatively good will power. I could summon up the courage to deal with pain if I knew it would be better for me in the long run. I have even turned cake down on more than one occasion.
Now this auto-injector has come into my life. It fills my fridge and my waking moments with thoughts of certain and impending pain.
Yeah. I am that worked up over a tiny needle and thimble-sized amount of water-like flu.
I can’t get past the barrel clicking in place and the needle piercing my naked flesh. It is the most vulnerable I have ever felt. The shot itself is painful. It burns. Then it keeps burning. It leaves the injection site red, purple and inflamed. I have the bruises from injections I did months ago. Then the real fun comes.
This medicine causes “flu-like” symptoms. This was reiterated to me by my home nurse.
Put on the list of other things I thought would never happen to me: I have a home nurse.
Post shot, my skin is so sensitive I can’t bear any sort of contact.
Scratch off the list:
Cuddling. Holding hands. Hugging. Shaking Hands. Wearing clothes. Using blankets. Standing. Sitting. Laying. Using a razor. Brushing my hair.
No, these activities are apparently far too excessive for my skin to tolerate.
So for the better part of 7 hours last night, instead of sleeping, I was rotating between trying to lay down, trying to stand up, trying to sit down, trying to shower (cross that off the list too) and sobbing. This was punctuated by the sound of Indy, the dog we are sitting, (who was howling in congress with me), and then the tortured mewing of my adopted cat Fahrenheit, who (awoken by the howls of despair), remembered that he had been shut up away from us and was missing out on everything.
So needless to say, no one really slept last night, which unfortunately included my loving boyfriend who operates heavy machinery for a living.
Now after a night of what probably sounded like ritualistic animal sacrifice, I rolled into work looking like a drunken, feverish, puffy, purple, tentacle-less squid. (My face swells and changes color after crying.)
I work for a family company and fortunately they’ve been pretty understanding about me coming in late, or me coming in looking and acting hung-over.
I want to say thank you. Thank you for letting me change my work hours. And I also want to say, “I feel like hammered dog-shit. Why am I here?”
I do have to continue working, but I am starting to wonder about how long I can keep this up? I certainly did not intend for this job to be my livelihood for the next 20 years. Now I am thinking about a future with limited mobility. I am thinking about the things I haven’t done yet because I assumed there was going to be time.
Yes. That’s cliché.
I’m not dying, but I am feeling my possibilities and ends starting to shorten themselves.
Like, I want to teach abroad.
Is that even an option now? How can I teach in third world countries if I am tied to a refrigerator for my fresh supply of flu therapy.
I had been talking to a Navy recruiter about officer training up until May. I had put it off from the previous year to help take care of my grandparents. I had planned to enlist in September.
Chuck that right out the fucking window.
The US Navy does not do progressive, incurable illnesses.
Now I get the pleasure of watching people younger than me do the things I had talked about doing. It’s rather morbid.
My brother recently went through boot camp. It’s exciting. I’m not a gung-ho armed forces supporter, but I do recognize the opportunities that are now in his reach. There is also valor in sacrificing personal freedom for something bigger than yourself.
I am proud of him, but I am also jealous. And I am starting to wonder if that is going to become my state of being. Jealous of others who aren’t sick. Jealous of opportunities I might not have even taken if I wasn’t sick. … being just plain jealous of any body who isn’t me.
I feel that I have to say, I know that I am actually still pretty lucky.
I have a job. I have a job that works with my current state of being. I have a boyfriend who loves me and will stay awake until 4 AM to do something for me that I can’t do myself. I have a family who lends support and offers loving advice. I have health insurance (courtesy of the ACA). I have access to a pretty awesome neurologist. I have a place to live. I have a little shithead, purr-box kitten who likes cuddling almost as much as attacking my toes and eating the pages in my books. I am also not suffering from the worst or most debilitating of auto-immune disorders. In fact, as of now, I have a relatively mild case of MS.
So as long as I can keep reminding myself of that, I’ll be alright. Right?
Is this really my life?