Days spin into nights and into days again. Summer dragging on and on. A hot beast by August every year, a threatening season despite its spring relation. By the end of summer, the ground is cracked and dry like the heels of my mother and her mother’s mother’s dry pale skin. Even the birds are tired by the end of August and all the people are angry and hot. But then the days get cooler and the fist of fall hits me on the chest, breaking me open at my breastbone to reinstill my winter bone ache. The blow forcing my lungs to expel very last breath of summer air. The leaves fall from the trees until they are thin skeletons, standing like a relic of another year gone by. Then it’s winter and the tight-lipped holiday season passes by. The ice moves in and we in Maine are buried by seasonal Nor’Easters until we are up to our throats in snow. My skin grows cold and my pale sinew is stretched over the bones of early nights. Wintertime depression moves on me like a ghost.
And before I knew it another year in sickness passes me by.
I think back on it. All my exhaling between my doctor’s appointments. I offer up my white arms for blood tests and I’m poked, prodded and rearranged until I feel unlike myself. Grilled with the same monotonous questions again and again. How are the voices? The pain? The sadness? Do you still hurt all the time? Have your migraines changed? Are you still sleeping too much? Eating too much? How’s your lower back? Do those terrible cluster headaches still wake you in the early morning, covered with sweat? Is your pulse still tachycardic? And that wakes you too when it races at night? How are the hallucinations? Are they still trying to read your mind?
The answers grow in the back the of my throat and are forced up from my stomach, rattling around my mouth like bitter candy in a plastic bag, “I’m fine,” I say and make my next appointments.
Then six months of winter lapses.
Then summer comes again.
Then fall, winter, and spring.
Being chronically ill means being ill forever.
At 5 I wanted to be a vet. At 6 or 7 I wanted to write books. At 10 I wanted to be a Zoologist. At 11 I wanted to be a Marine Biologist. At 13 I wanted to be a writer again. Then I wanted to be an Anthropologist. By high school I wanted to be English teacher. I was planning on being the first in my family to graduate college. I wanted to be a Forensic Anthropologist. Then a Community Health Education Specialist. And then all of a sudden I just wanted to make it two months without going to the hospital. I just wanted to finally the right diagnosis. I wanted working meds. I wanted just five minuets of silence. I just wanted the voices to stop. I just wanted to be stable. I just wanted to be able to hold down a job. I just wanted to get out of bed. To sleep. To not cry every time I tired to talk. I wanted to be able to talk without my vocie shaking. To be able to brush my teeth or hair or take a shower. To open the shades. I just wanted to make it another day, another hour, another minute…
People don’t realize how much being disabled changes you. How hard it is to accept that no matter how much I want to be okay again, how much I want to be the pre-sick me, I can’t ever be that again. Thats all gone now. Abled people always say that you aren’t their disabilty but that’s total bullshit. I am my disabilty. Totally 100%. Schizoaffective Diaorder and its slew of symptoms, chronic pain, migranes, cluster headaches, seizures, muscle weakness, brain fog, chronic sciatica…
…these things made and fuck you for trying to tell me otherwise. I hate being sick but I hate it more when you tell me that being sick is a bad thing to be, when you tell me that what I am is wrong.