Origins

I was diagnosed with type one diabetes at the age of 25. I had just finally gotten through a B.A. after dropping out three times prior, and it was coming to exams and papers for final grades. I had had my birthday three weeks prior, a hundred people showed up, there were four birthday cakes and chocolate focaccia made by my friend Tom, a cancer virologist. Another friend let me use his pent house to host, and helped me carry my LP player and box of LP’s from campus to his house. I spent the following week in London with my sister, constantly pissing myself and drinking over eight liters of water a day. I then went to Norway for two weeks before returning home and being hospitalized. My life was planned and mapped and understood. I knew where I was going, I knew who I was. I was set up to be volunteer coordinator at the Bustan in Bethlehem (yes THE Bethlehem) where I had volunteered several years prior. A friend had put me in contact with an organizer in Nepal which I contacted and made a contract to be a sustainable advisor and volunteer, having received some Permaculture training, after my year engagement with the Bustan. I was ready, my feet planted to kick off, my soul balanced. Then. But then. It happened. I was diseased.

There is no history of type 1 diabetes in my family. Type one diabetes, also called juvenile diabetes, is a supposedly hereditary auto-immune disease. This means that it is NOT caused by diet or exercise, so no, I can’t just get off my 145lb, 5’8” ass and exercise and have it go away. No, it’s a disease that degenerates your heart, kidneys, eyesight and nervous system, but is not called a degenerative disease. It’s invisible, the effects intangible and insidious. I have had to sit down awkwardly in the middle of a grocery store and chug some orange juice until I stopped shaking and sweating. Most people wouldn’t make eye contact, most were even disgusted. Assuming I was some sort of drug addict, I suppose.

It wasn’t until six months later that I had any idea what could have caused it. A military doctor, I was still on my father’s insurance, let slip that there were some links between combat chemical agents used in the middle east and the onset of Type 1 diabetes. It’s caused by a bodily shock, my friend Paige, for instance, developed type 1 from chemo. I suppose the most rational answer is that I developed mine from activism.

I despise this disease.

It makes me despise myself.

There’s no escape from the daily pricks, the injections, the constant fear. Fear of being too high and going blind, fear of going to low and having my heart stop. YES for those of you who don’t know, that’s how serious low glucose is. I’m sick of trying to fucking explain it. Low glucose untreated leads to death, rather quickly. I was travelling with some hippie folks and they didn’t understand until I had to emergency glucose myself the seriousness of low glucose (if you love a type 1 diabetic, keep candy in your bag. Bring them sugar free pudding too)

It’s taken me three years to come to terms with this damn thing, and I’m still struggling. I have been trying to find any purpose to my life. So far, all I have is art. I can’t be a balls deep activist any more. They won’t take me for a research trip in Antarctica to help study the rates of microbials. They won’t accept me into the French Foreign Legion, the Peace Corps, most U.N. and N.A.T.O. field positions, the army, the air force (I wouldn’t consider those last two anyways), employers will not hire you if they know. I’ve started not telling people at interviews just to try and help my chances. They will not promote you to more responisbility if you have the disease, because you are not considered wholly dependable. This is not my fault, but it is still a reality. I am not always dependable. Sometimes my glucose is low and I have to treat it before going back to work. This has caused no end of annoyance and tongue clickings by my employers, sometimes it’s been high for days and I can’t sit at a desk for eight hours. The flexibility and understanding required to deal with an employee with type 1 diabetes seems to be impossible to find.

A man I know, Russ, has just ended up in hospital with seizures. He’s been Type 1 for twenty years. It terrifies me. It makes me want to quit while I’m ahead. His employer, one of my partners, (I’m polyamorous but that’s for a different day) has tried everything to help him, but the rigidity of a corporate system just isn’t built for someone with the disease, and we aren’t eligible for disability, despite obvious indications of the impossibility of work.

In the news a boy dies because he can’t afford his insulin and is off insurance. Now I don’t mean to criticize a dead man, but something similar happened to me. I researched and found over-the-counter insulin that would get me by at $25 a vial. It’s disgusting, leaves me acne prone, nauseus and about as emotionally level as a bi-polar schizophrenic. But it keeps you alive. I’ve had to beg on the street with a sign for that $25 vial. Maybe not everyone has the humility to ask. Maybe not everyone has the capacity to think straight. Also, why didn’t he ask his parents? If his parents could afford insurance, they could surely spot him $50 for the over-the-counter stuff, right? Maybe I’m just priveleged, but then again. I don’t make enough for the nice insulin, as evidenced by my example I sometimes don’t have enough for the cheap stuff. Depending on your state of residence you can apply for Medicaid and receive those benefits as a type 1. Here in beautiful Colorado I get all my insulin and supplies for free, as long as I make below $1200 a month. There are many problems with this. Firstly, the cost of the insulin + private insurance comes to around $1500 a month. So once I make $1200 I would have to pay $1500 for my disease. I would be back to begging without this beautiful benefit, and the help of my parents. They send me $75.00 bi-monthly to help with supplies like needles, testing strips, and of course food. Which brings me to food.

Another NECESSITY for any diabetic is a healthy diet. Food stamps can help at $46.50 a week, any normal person would think that’s an ostentatious amount, and I agree. Except, type 1 diabetics cannot eat anything with a high carb or sugar content. This cuts out all cheap food. Mac n cheese? Fuck no. PB & J? You know how much sugar is in regular peanut butter and jelly? Never mind the carbs in the bread? Frozen Pizza? Think again. Spaghetti? No way. If you try to think of a truly cheap meal with enough protein & fat for a human body and a low carb content please share it with me (no really do) because I have to make money under the table to pay for my food habit. I spend at least double the amount I get on food stamps on food. I have to eat meat, and the inorganic meat with rsbt and other hormones influences my overall health and glucose. Quel surprise. So in the interest of staying as healthy as possible I try to eat 100% organic. I know I’ll get flac for that but listen all you nay-sayers saying I shouldn’t be in the system taking advantage, what the fuck would YOU do if the rent on your body suddenly went up from basic necessities to $1500/ month in medicine and $400/ month in food? Do you make 2100 a month? How would you pay rent? You see my problem? I don’t want to be a stigmatized lazy fuck. I don’t want to be diseased. But I guess I have to deal with it or commit ritualistic suicide. Until then I’ll keep looking for work, having interviews, and this time lying. Since after finding out I have a disease in interview I have been blanked & rejected 3 times. There is of course no PROOF that this is the case, otherwise it would be illegal. So they just say nothing.

We are shamed into feeling guilty for a thing we cannot control, to work beyond healthy means, and eat below a good standard. How do we mitigate all this?