“Do not be too moral. You may cheat yourself out of much life. Aim above morality. Be not simply good; be good for something.” –Thoreau

14 September 2011

Migraine poem.

THE RENT

paying
the rent some
times
feels like we
re look
ing down the barrel
of a loaded
gun

cliche and pain
ful in the same
empty
ways

the means beyond
that work
ing poor
that fragile
static

unclear
unwanted

paying hospital bills
with our blood

which
we discover
means less than we
think

you laugh

the gun
fires back

and you can
not make
be
lieve

not the way
that you used to

that
well
ran
dry

too







Poetry lives in my head, even when my head is killing me. Sometimes getting it out of there helps.

Blessings.

11 September 2011

A cinquain, a photo, a memory.


I CANNOT MAKE THIS BEAUTIFUL. I CANNOT.





she died

the way i would

not want:





       sweat and grasping









       breath

              rattling loud enough to






                                        fore


    warn god.









 
 
 
 
 
 
The school administration told our teachers not to tell us.
Matt Davis, my speech coach, refused.
He was the first teacher to turn on the news, shortly after the second tower was hit.
Passing students just stopped to stare.
Eventually, Davis wheeled his TV into the hallway because his classroom had filled up.
My mother, like so many other parents, called my cell phone crying.
I sat on the concrete steps outside until my legs stopped shaking.
Then I walked home alone.


Blessings, everyone.

08 September 2011

Competitive Illness

I swear I'll write about writing again. Eventually. Someday. In the meantime, here's my two-cents on a topic I feel overly-qualified to discuss. My husband, Casey, suggested I write a little bit about a very strange phenomenon I've decided to call competitive illness.

I was diagnosed with Crohn's Disease several weeks ago. It's not a particularly rare disorder, with perhaps 500,000 cases in the U.S. alone, and so most people know someone who suffers from it-- a brother, an uncle, a best friend's cousin. Crohn's Disease is an autoimmune disorder which causes a person's white blood cells to attack their own stomach and intestines. It's not really clear why this happens, but I've always had a tendency toward the odd and untreatable. Migraines, rashes, ear infections, benign tumors-- my history of illness has always hinted at an abnormal immune system. You grow accustomed to weirdness.

If you've ever been really ill, especially with something only marginally treatable, then you'll know exactly what competitive illness means. It strikes whenever another person discovers you are sick, and it is most of the reason people with chronic illnesses keep them under wraps.

Competitive illness, as I define it, is a natural phenomenon wherein Human Being #1 feels an overwhelming need to prove to Human Being #2 how minor the illness of Human Being #2 really is. It is usually accomplished by countering HB2's information with stories from HB1's life or the lives of those people he/she knows, all of whom are far sicker than HB2. This is not the sort of behavior that is limited to particular people; rather, it seems to be a natural human reaction to illness.

Some people just can't stop themselves from competing for the title of Sickest Person in the World. If you have a headache, they have a migraine. If your feet hurt, they have a bad knee. If you develop Type 1 diabetes, they most certainly have debilitating Type 2 in their families and it's really only a matter of time. Cue the wailing widows.

But even if you aren't competitive with your own personal illness-- men, especially, prefer to tell the world that they never get sick-- you undoubtedly suffer from competitive illness anyway. Since I've discovered I have Crohn's, I have chosen to inform only select family, closest friends, and coworkers who need to know why I've been missing so much work. Of the people I've told (perhaps 15 in total), all but two have informed me that they know someone else with a severe case of Crohn's Disease. And not just Crohn's, but severe Crohn's. As if one would assume they have mild Crohn's unless you clarified it for them. As if the symptoms of Crohn's Disease can feel mild in the middle of a flare-up-- which, incidentally, they can't.

My husband tells me it's possible that people are just trying to be polite; that they want to relate to what I'm telling them without having to say: "Wow. That really sucks." He believes that they want to tell me about their own experiences with Crohn's, mostly second-hand, without scaring me, and so they make it clear that this only happens in severe cases. He thinks it's a way of saying, "Luckily, I'm sure you won't have to deal with this."

I'm not convinced this is true. I think it's more likely that people use this as a defense mechanism. When human beings are uncomfortable, we try to deflect the uncomfortable thing-- in this case, the awareness of another person's pain. Our automatic response is to belittle discomfort. We tell small children they're fine when they fall down and cry. We tell our preteens and teenagers to get moving, to just "suck it up."  Heck, this girl's parents never let her miss a single day of school. When someone tells us they're sick as a dog, we tell them just how much sicker they could be. Stop whining. Quit crying. Get back to work.

I have gathered that I don't seem like a normal Crohn's patient: I am functional. I can eat. I have maintained my good humor. It's true that I have high internal pain tolerance (read: I can withstand more pain on the inside of my body than the average person, although my skin sensitivity is average). But withstanding pain isn't the same as not feeling it. Migraines, TMJ, plantar fasciitis, back pain... these are par for my course. I can function in day-to-day life with a higher level of pain than average. But sometimes people, even my own family, choose to view my ability to cope as a sign that I'm okay. "Okay" is always relative. If anyone bothered to ask if I was okay, I'd answer them honestly. And the answer would be hell no.

All right, yes, I can deal with it. I am dealing with it. I go to work and I clean my house and sometimes I even make dinner I won't be able to eat. Only my poor beleaguered husband has to go through knowing what "dealing with it" actually entails, and that's probably exactly as it should be. I don't need other people to validate my illness for me but I am tired of being made to feel like I have prove to others how much pain I live with. I'm not in competition with your brother, or uncle, or best friend's cousin. I don't have to live up to your standards of human sickness. I don't really care who you know or how sick they are. Don't try to be polite. Endeavor to be honest. And honestly?

Wow. This really sucks.