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?
