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Severely ill since 2000 |
I'm 24 years old, with skin milk-white from
staying indoors. I've been house bound and mostly bedridden for six years.
Even my dad doesn't believe me at times that I'm really sick. Or he latches on
to some far-fetched explanation of things, or wacky new treatments. If a doctor
tells him it's psychological, he's believed the doctor over me. I hate that.
Always I have to defend myself.
My mother died, and there is no one to take care of me. I am very weak, and it's
difficult to get food, and I can't eat processed food because of my
sensitivities. I was wishing today that someone would walk into the room where I
was lying on the floor, helpless and out of it, and bring me a warm bowl of
chicken soup. It was five hours before I could get up and open a can of tuna. At
last count, I had gone 16 days without bathing.
Am I faking? What kind of question is that!? But even I can't wrap my mind
around the enormity of all that has happened to me. I still look out the window
and get so lost in the beauty of the world that I forget that I can't go
outside, can't even get dressed for it. Springtime is the hardest.
My worst frustration, aside from my secret stunted wish to get married some day,
is that the nature of the illness itself cuts me off from receiving medical
care. Doctors don't understand this and label me crazy, faking, whatever, and I
can't take drugs because I'm sensitive to them, so what's the point, what does
that leave me with? And I'm housebound. No god of medicine is going to go out of
his way for this fainting flower.
When I try to get medical care, the strain of trying to convince someone I am
ill and the hurtful things they say to me practically make me crack up. Just the
physical demands of leaving the house, even in the wheelchair, are enough to
make me sicker for weeks. I can't describe how ill it makes me.
I get a case of the "used to be's" from time to time. I was a hiker, and artist,
a singer, a cook, a member of a family. Now I am "the girl who won't get better"
and can't say the reason why because no one has told me.
My first doctor told me, when I was finally diagnosed after suffering for many
years, that I would recover in three years. I have so much bitterness towards
him. He was casual, didn't or couldn't answer my questions...
Where do I go from here? According to my friends, I am bright, strong,
attractive, talented, fun. And yet, I am too disabled to even have visitors or
sound around me. An occasional brief phone call is all I can do.
I don't know if I can get well. I think we all have a breaking point where we
are not able to try anymore. Or, not even a breaking point, but a time where the
heart, mind and spirit of a person get together and say, "Leave me. I can rest.
That is the one thing I know that doesn't make me worse." That is sensibleness.
I do not know if I will eventually want to stop fighting for medical care. So
far I have been resilient
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