My Life With MHS
Every day I ask myself if it's really
worth being alive. Every day I wonder what I did to deserve this. Every day
is another nightmare that I just can't seem to wake up from. I have MHS.
MHS, or Master Higgins Syndrome, is a rare and crippling form of fatigue. I must eat
something every minute, or I will die. Tasks that most people find
rudimentary are a challenge for me. Dressing myself can be difficult. Using
the bathroom is often a life-and-death struggle. Showering is all but
impossible. The full impact of MHS cannot truly be described in words, but
to give you some insight into the torment that I live with, I will take you
through a typical day in my life.
07:30 - I wake up and get myself out of bed. I must move quickly to grab
the bunch of bananas I placed on my night stand the night before. Bananas in
hand, I check my messages and e-mail, and then hurry to the bathroom.
07:50 - I begin bathing. I have two bathtubs side-by-side. One, for
bathing, the other, filled with cold water and apples. It is quite a feat of
dexterity to wash with one hand and eat with the other.
08:20 - After drying off, I make a quick trip to the fridge to grab some
tomatoes to eat while I dress.
08:30 - I take all the carrots out of my vegetable crisper, (which I filled the day before), and leave for work.
09:00 - My work day starts. I used to have a cubicle along with everybody else, but the crunching of carrots brought about several complaints, so they've put me in a soundproof cubicle, farther away from the rest. I am so alone. Sometimes I am glad my cubicle is soundproof. That way no one can hear me crying. I used to work with one hand and eat carrots with the other, but my productivity was too low, and they threatened to fire me. So I had to build a device to help me eat. It is basically wrapped around my head with a pole protruding from the front. A string hangs from the end, with a clamp that holds the carrot in place. If I have to leave my cubicle, I leave the invention behind. One day, however, some co-workers video taped me in my cubicle, and posted it on the internet, dubbing me "The Fishing Unicorn." I was so embarrassed, I wanted to die. I went at least 50 seconds without a bite, but then I gave in. I wouldn't let them get to me.
12:30 - It is time for my lunch break. I usually sit alone, or just hide in my cubicle, but sometimes Tina sits with me. Tina is a girl that works in the same building as me. I hear other people calling her a "One-toothed donkey," but they're wrong. Tina is the most beautiful person in the world, and I think she likes me. My lunch consists of pineapple and milk. It takes a while to eat a pineapple, and drinking too much milk too fast makes throw up. I threw up once and was in the hospital for days. I like being able to take my time eating my lunch anyway. It gives me more time to talk to Tina.
13:00 - Back to work, and it's more carrots for me. The afternoons are especially hard, because I miss Tina, and I'm getting sick of carrots.
17:00 - My work day is over. I take the last of my carrots and head home, stopping at the grocery store to buy enough bananas, apples, pineapples, and tomatoes to get me through the night, and carrots for the next day at work. I usually just sit at home and watch T.V. or write poetry. Maybe someday, if I can muster the courage, I will ask Tina to come watch my old tapes of 'Life Goes On' with me.
00:00 - Time for bed. I climb into bed and attach my IV, as I drift into another blissful dream where I am a different person. Unshackled as I am in the day, free to live and do whatever I please . . . , and for a time I am happy. I know that I will eventually have to wake up, but for a short time I am free. Free.