Monday, November 5, 2012

Day 865: A Worthy Disease

What makes a disease, or a medical condition, worth our time and attention? Is it the death toll? The suffering? The age or race or gender of the people it is most likely to afflict? The marketing gurus who choose to jump on the bandwagon? And what does all that attention really mean, or do, for people who are actually affected by the disease or condition?

I really didn't intend to write this post right now. Tomorrow, I have my first appointment with my oncologist in six months and I'm very nervous about it and I wanted to just write something lighthearted, especially since I feel that my LiveChickenonSix blog deserves some love, but I just haven't had the inspiration to be funny.

Last month was Breast Cancer Awareness month. Anyone who has ever read this blog knows how I feel about that. But this month is Epilepsy Awareness month. Raise your hand if you knew that. I am sitting in a windowless room by myself and yet I'm pretty sure that just about NO ONE I know is raising her hand right now. And yet, epilepsy affects millions of people. And--get this:

It kills more people every year than breast cancer does.

That's right. More than 50,000 people die every year from causes related to epilepsy. About 40,000 die every year from breast cancer. Both statistics are sad and unacceptable. And yet I am in a rare position to say something about the disparity between the ways we look at these things, because, well...I've had both.

I know very well how absolutely devastating epilepsy can be for those who suffer from it or watch their loved ones suffer from it. I have epilepsy on both sides of my family; I was lucky to have pediatric epilepsy that subsided when I was an adult and never caused brain damage or directly endangered my life. The things that people go through with severe epilepsy are terrifying, humiliating, frustrating and sad. Epilepsy can rob folks of their best things--their ability to think coherently, interact with people, create art, read, listen to music. It can destroy brain cells quickly or slowly. It can kill, either from prolonged seizures, sudden death in epilepsy (SUDEP) or seizure-related accidents.

And yet...there is no general sense of urgency about it. When I began telling people I had epilepsy--after my parents convinced my teachers that if I could keep up in class WHILE having 100 seizures a day, I probably could continue to do well in mainstream classes when my seizures were actually controlled--some people seemed confused, or uncomfortable, but honestly, most people just didn't know what it was. No one responded with pity, or fear, no one seemed to think I was going to die. There was no conversation about the poisonous medications that I was given to control my seizures, and even I didn't realize how bad they were (even though one of the medications regularly caused stomach pains so debilitating I couldn't walk when I was 7, 8 years old) until I had my gallbladder removed when I was 26 and the surgeon showed me the picture of my crazily-enlarged liver.

As someone who didn't even really drink in COLLEGE, I wasn't happy with his judgmental tone when he showed it to me. I asked him if he had bothered to read my chart. All those years on anti-convulsants, doc. All those years of blood tests to see if the poison was going to save me or kill me. And hey--I only took those meds for 10 years. Some people take them, and a hell of a lot more than what I took, forever.

People joke about epilepsy, talk about conniption fits and all of that. People forget about it. The connections between homelessness, poverty, unemployment and epilepsy are rarely mentioned. I will never forget when I saw a homeless man who had claimed a suburban corner as his spot begin to have a seizure in the middle of the street. As everyone around me spat out insults about him being a junkie, I realized right then and there why he was homeless.

So there is an insane lack of awareness of epilepsy and there is not nearly enough research into the condition (epilepsy is not a "disease"). And some ways, those facts were helpful for someone like me who had a relatively mild (100 seizures a day doesn't seem mild, though, does it?) form of epilepsy. People didn't know about it, so my family got to frame the message. I looked normal and functioned normally, so I got to be a "normal" kid in the eyes of other kids, even when I had a grand mal seizure in front of the entire sixth grade.

I had side effects. There were limitations on my activities. My parents worried about me for extra reasons. I knew how dangerous driving could be. I was very aware of the water and I never took baths when I was alone in the house until I was 22 and living in my first apartment of my own.

I never, EVER thought that epilepsy would kill me.

Now, listen--I knew that it COULD kill me. I knew that it DID kill people. I knew I was lucky. But epilepsy never made me think about death on a day to day basis.

Enter breast cancer. As soon as you hear the words "you have cancer," you are convinced that you are going to die. I don't care what kind of cancer it is, what stage, how old you are-- that's what you think. You begin to plan your memorial service and get your affairs in order. You begin to think that this wasn't enough time, no matter how much time you've been given.

Then, you start to think about how you will suffer before you will die. I don't care how Pollyannish some claim to be, or how positive the attitude--EVERYONE with cancer worries about this. The surgery, pain, chemo, how fast or whether it will spread, radiation, all of it. You are bombarded with those thoughts. And why is this?

Because let me tell you--everyone ELSE thinks this too. Cancer scares the shit out of people. They treat you differently, cry in front of you, ask you awkward questions all the time, refer to you as "sick."

But I NEVER felt "sick" from cancer. Chemo made me sick. Cancer just necessitated the chemo. On the other hand, epilepsy made me "sick." It changed my daily life. Cancer didn't do a damn thing to me--not until I knew about it.

My grandmother watched a tumor grow in her breast for a year because she was afraid to be told of her certain death from cancer. She lived 11 more years, and it wasn't breast cancer that killed her.

We make movies about cancer and yet in reality, we are so hush hush about it, even with all the Internet oversharing and the support groups. We have this sense of breast cancer as something that can take our youth, our health, our vitality, our sexuality, and our lives, and we live in fear of it. But you know what? There are a lot of other things that can rob you of those things. We should fear the loss, not the messenger. We should accept and admit that some people will live with cancer as a chronic condition and they will die from it, and others will have cancer and will not die from cancer. We should be able to talk about the suffering endured without obfuscating it or making it stand in for the disease itself. In other words--focus on the cancer and the likelihood or not of death, not the breasts or the baldness or the puking.

I am not trying to say that cancer, and breast cancer in particular, isn't serious. Obviously I would not write this blog if I believed that. I actually think it's much MORE serious than the way we treat it with the awful pinkwashing and tit-parading silliness that tries to turn suffering, disfigurement and death into a game of societal beer pong. But to me the worst part of all the pink, after the fact that it doesn't usually actually contribute to research that could help spare women from the vestiges of breast cancer, is that it throws cancer in our faces all the time.

Women fear breast cancer in part because they don't want to be identified with it. Who wants to be "cancer girl?" Can't I just be Katy, the girl who happens to have cancer right now, or the one who had cancer before, or the one who hopes she never has that shit again?

That was me with epilepsy. Katy, the one with long curly red hair, who was a writer, and a tomboy and a goof. Oh yeah that girl, she has to take medication right, she has some kind of seizures or something, right? Epilepsy was like asthma, or diabetes. A bad and unfortunate condition that could be very dangerous and even deadly, but was accepted as a thing that happened. You knew people with inhalers, kids who took insulin shots. You didn't get into it most of the time. It was just a fact of life.

Not like this big C. There's more awareness, sure, but also a hell of a lot more blame (what did you DO to give yourself cancer? What are you going to do to get rid of it?), unsolicited and ridiculous advice from people who know nothing of what you're going through, and uncomfortable FOCUS. So now I am a SURVIVOR. That's fine. Cancer tries to kill you, and triple negative breast cancer in particular is fairly good at it.

But I have survived multiple OTHER things that have tried to kill me. And even when one of those things is granted its own month, there's a collective YAWN. Some things--car accidents, epilepsy, guns at your head that never went off--just aren't SEXY.

Once I was talking about these two diseases/conditions with a younger man and he said he thought that people were able to rally behind breast cancer because, well, epilepsy is just depressing. I just couldn't bring myself to say, what honey, you don't think CANCER is depressing? What books have you been reading and what were you smoking while you turned the pages?

I have to admit though that he was right. We have framed certain diseases, such as breast cancer, as beasts to triumph over, fight, and win. We talk about hope and love and courage and strength. While all of that might be appropriate, it masks pain and legitimate difficult emotions at the same time that it does this:

It allows us to believe that there aren't others out there with similar fights, who fight in the shadows, because no one even acknowledges the enemy at the door.

I have an aunt who has had uncontrolled seizures, requiring an insane amount of very toxic medication, for 35 years. She cannot drive or use computers. And yet she raised two boys and has worked for her entire adult life. The obstacles she has met every day would put most of us, even many of us cancer survivors, to shame. But this fight is invisible. It is so invisible that even when we acknowledge it, we don't. I have told everyone at my spinning studio that I used to have seizures, and therefore I can't be in the gym with the strobe-effect lights(some of the lights have that effect when the ceiling fans are on). There are other lights, and some instructors use them. Others don't, and then it's on me to ask about it AGAIN, wondering how many times I need to mention this since I go there several times a week and have for a year and a half, or, just take my chances and say nothing.

Cancer is not my only pre-existing condition. I have been denied health insurance on the basis of epilepsy as recently as 2004, though I hadn't had a seizure since 1988 and hadn't taken medication for the condition since 1993. I am still not allowed to renew my driver's license without a doctor's permission. Things have happened to my body--from CT scans of my head, toxic meds, and destroyed brain cells, that can have long-term impacts on me.

But who associates me with epilepsy? No, people associate me with breast cancer. These things are so much the same to me, and so different in everyone else's eyes. Cancer is SERIOUS. Epilepsy was just one of those Katy things. But to me, they are very much the same in some ways. I have suffered through these things and I have been extraordinarily lucky--SO FAR. I have always lived with the knowledge that my luck might run out, from either condition, or from something else. I worried about epilepsy in the middle of cancer treatment, with my morbid insomnia or the scary side effect medications that were intended for treating mental illness (but hey! they're good for nausea too!) leading me to pick and choose amongst various evils.

I write a cancer blog because I had cancer recently, might have it now, who knows. I write about it because it is terrifying, and sad. I write about it because I felt that it took some of my best things away. I write about it because I realize now that it didn't. But I think about other things too, all the time, other forms of suffering, other scourges that are silenced in our collective focus on the "uplifting" illnesses.

There are a variety of diseases and medical conditions that affect all kinds of people, and I can assure you that those people usually did nothing to deserve it. Some of those people will suffer greatly from those conditions and some will die. There should be more research into figuring out how to reduce suffering and prolong both life and the quality of life. But let's please stop bringing this "model minority" framework into disease. It helps no one.

I grew up in what one might term "The AIDS generation." I grew up with Ryan White, and fear and shaming, and the knowledge that some gay communities in particular were experiencing a plague unlike any we had ever seen, with multiple funerals every week, and time just stopped for many who lived through that even if the trauma did not. AIDS meant certain death when I was a child. As soon as we began to realize that it could affect anyone, it literally changed our behavior. Some of us became the condom warriors, the 14 year old virgins who bought condoms for our friends if they were too embarrassed, the vice president of the junior class who eventually suggested buying a condom machine for the high school as our class gift, the teenager who drove her ailing grandfather around with keys hanging from a "no condom no way" chain. Some of us became those kids who demanded STD testing of our lovers, who went to the clinic for HIV testing ourselves.

In fact, let me tell a story. It's what I'm good at, right? When I was 24, I dated a man who was 28. I will not even try to tell the entire story of that relationship. Let me preface by saying I did not have unsafe (condomless) sex with him, even though I was on the pill. We were together for a few months. It was dramatic. He had had quite a "past," but was seemingly very normal when we were together.

He died at age 30.

I found this out shortly before my 27th birthday. He died under mysterious circumstances, or at least the circumstances were mysterious to me. We had not been in touch. I was beyond shocked. He was a healthy, handsome young man, he played and coached soccer, he had been so damn ALIVE and I couldn't believe it. I also wondered how and why he had died and I couldn't help but worry.

I went to a local clinic and got an HIV test on my 27th birthday, right before I went on a date with a guy I had just met recently.

It was the easiest and most painless medical procedure I had ever done. And I had done it before, when I decided to go on the pill at age 18. But now I was worried, even if illogically so. And I was terrified. The whole process initiates fear--the way they give you a number, no name, the way they offer you counseling. I mean, when you go in for a pap smear, you think about the coldness of the speculum, the brief pain, you wonder how much you will bleed, but you rarely if EVER worry that you will find out you have CANCER and that you will die. An HIV test? There's death lurking right at the door, even though a lot of times, these days, HIV/AIDS are chronic conditions and people can live long and productive lives with them.

Still, I brought my mother with me to get the results. She drove me to the clinic a few days after I went in the first time, and sat in the car while I went in. She tried to act normal. She didn't ask me lots of questions. I came out, shaking and smiling, and she could see in my face that I was fine. She immediately started crying. How many times had she gone to EEG appointments with me? How many orthopedic visits did she make when I was learning how to walk again? And yet, HIV, as unlikely as it was to affect me (the woman administering the test asked me lots of questions and then seemed totally baffled as to why I was there. You have no risk factors, she said. Well, I dated a guy a few years ago who just died and I don't know how he died and it's freaking me out. Whoa, she said. All right.) just completely scared the crap out of my mom. And I didn't blame her. I realized right then the things that children put their parents through, and the courage it took for her to be there for me in that situation.

What I am trying to say is that some things scare us, in part because they shame us or because we fear what they will do to our sense of ourselves. I have wondered how I was unlucky enough to have the one disease that would take my best thing (my hair) and I have wondered if I will live to be old and I have wondered why my brain keeps working so well in spite of everything. And the answer is that it is a mystery. But this mystery should not be wrapped up in so much mystique, as ironic as that sounds. Let's take the celebrity out of the disease, the Big out of the Big C, the judgment out of HIV/AIDS, the silence out of epilepsy.

The answer is that our best thing is our ability to put ourselves aside, and see other people for what they are, right now while they're standing next to us. Let's see each person as the one, not the one in 8 or one of the 50,000 a year. And if we are still able, let's tell the story, for those who are unable, or unsure where to begin. After all, this life might be an accident of history, but it need not rest there.


  1. Right on!

    As someone who has no prexisting conditions and have always been healthy, I never have to wonder how we came together. It's your consciousness and the way I delight in how you approach life, with humor and brains. It's how you can usually not take things too seriously - but, oh baby, when conviction is called for you've got it in spades!

    I'll argue until I'm blue in the face that your HAIR is NOT your best thing - it might be the thing you are best known for, but WHO you are is truly your best thing.

  2. Hon, let me make it clear that my being brave through any of it was never the case. As a mom, it's what you do - right? Hell, if I needed to be brave, I am not sure I could have watched that tiny little girl come out of that huge MRI machine, Sarah wrapped in her arms, waiting to hear if the seizures were the result of a brain tumor or....or what they were...idiopathic and never to be explained. I did what had to be done - what needed to be done.

    And remember the infamous ironing burn? Sometimes even moms fall down on the job...but I don't know that bravery on my part had a darn thing to do with anything.

    The answer truly is "that our best thing is our ability to put ourselves aside, and see other people for what they are, right now while they're standing next to us..each person as the one."

    Of course as my precious daughter, you are more than "the one." And that "one" story, whether intertwined with mine or not, has been and will continue to be so much more than an accident of's been and continues to be inspiring, captivating, fascinating...and, well, damned well written.


  3. My sister has had epilepsy since high school. I often "forget" about it until I am at an event that has strobe lights without warning and think "You ASSholes! Do you not know how simple it is to notate this on the tickets before someone purchases them?!?" I don't know how she deals with the fear of unintentionally harming herself or someone else if her medication were to not work one day. If she were to have the flu and vomit her medication, resulting in seizures...

    I did know that it was Epilepsy Awareness Month. But what do we do for these months? Say that we're aware? I'm aware. Now fix it. FIND A CURE for Epilepsy and cancer and diabetes and AIDS. I am sick of the sicknesses. I am done with the bureaucracy that is involved in the medical/insurance/pharmaceutical fields.