I'm dreaming. I'm a beautiful
healthy dolphin, the whole sea is mine to explore and I have the flexibility to
undulate every fiber of my being as I maneuver my way through an endless ocean
of temperate water. The water feels so wonderful on my skin, so natural, and I
am in the prime of my life. As any self-respecting dolphin would, I gleefully
jump and dance in and above the surface of the water. The sun dances with me on
the waves. It is magic, I'm in a state of pure delight. It is true
heaven.
I wake up,
and feel stiffness and pain as I try to adjust the sheets to cover my shoulder.
My mouth is swollen and parched, and as I reach for a sip of water, I feel the
strain of the muscles in my upper arm. I'm weak. I hurt. I can't open my
eyes; they feel as though there are tiny shards of glass embedded. I'm sure if
I could muster up some moisture they'd tear from the pain. My nose is closed on
one side from swelling, so as much as I want to roll over, I can't breathe in
that position. I sit up. I decide to stay up. I try to stretch, and as I do I
fear my knee will somehow dislocate. I fear this because it seems like I can
feel some cartilage shift when I tried that stretch. I warn myself to be
careful, and slowly make my way blindly into the bathroom. I use compresses to
help open my eyes. I add drops, which burn but bring relief in a minute or so.
I make the coffee, and as I reach to lift the pot it is too heavy, my wrist
snaps under the pressure, the pot drops and the coffee spills. It was only
filled half way, 6 cups. I laugh. Then, I cry, and then I laugh again because
I catch a glimpse of myself sobbing without tears, and for some reason, find
that humorous.
My mother is
62. She is in excellent physical condition. My grandmother is 82; I dare say
she's in even better condition! In five days, I will be 42 years old. I feel
older than my grandmother. Indeed, she has more stamina than I do. My mind and
spirit are quite willing, and in my dreams I am normal- (well, c'mon, I don't
always dream I'm a marine mammal), but when I wake up I'm reminded that I am a
young woman, with Sjogren's Syndrome.
What an
enigma. A puzzle I may never solve, because the rules of the game keep
changing! It is different,- but the same for every patient. It is different,-
but the same from month to month, Or even day to day for each individual.
Sometimes aggressively debilitating, sometimes in a state of remission, always
a series of challenges.
When asked to
describe my condition, I bristle. It's hard to do without sounding like a
complainer, a whiner. I mean, to really do it justice, I'd have to list a
myriad of ailments, that to a person who just really can't relate, well, it
makes me sound like a hypochondriac. It's easiest to let them know that my
system is attacking itself. That at night when their bodies go into a state of
repair, mine does not, and in fact, with every day it seems I age at a monstrous
rate of speed. That 10 months earlier my doctor prescribed pain meds and I
scoffed at him saying, I'm not in pain! Just give me something to make me able
to swallow a bite of sandwich! How about more Synthroid so I won't need that 2
hour nap every day! Now, less than a year later, I suddenly find I am having
trouble combing my hair, fastening buttons, and negotiating zippers. Getting
dressed is such a tiring chore I need a nap before I can go out! Making my
child his breakfast exhausts me. We often opt for whatever comes out of the
freezer and into the toaster. Eggs and French Toast are for holidays these
days. Yes, I aged rapidly this past year.
Today I can't
fight it. I'm tired by noon; I lie down, give in, and submit to the disease.
Today it wins. I'm dreaming again. I'm at lunch with my friend, we're
laughing. You know the usual, stupid husband tricks; what Oprah talked about
last week; what books we're reading and such, when suddenly, I feel like there
is sand filling up inside my mouth. I think sipping my water will help, but I
can't feel the soothing cool water, instead I feel like something... Is it my
teeth? Something is crumbling inside my mouth. This is no dream, this is a
nightmare! I wake up with a start, I realize it's OK, I'm OK, my teeth are
still in my mouth, well, most of them. I still feel pain, but I have my teeth,
and all is right with the world.
Mia DonVito-
Scranton, PA
