Tuesday, May 30, 2006

I Used to Have Such Beautiful Feet

She wanted back her strength, her stamina, her place at the head of legions.

I used to have beautiful feet.

Long, strong toes. Big, narrow feet. Size 11 feet that I could never find shoes for but that could land a front kick to the groin with elegant ease.

The day before Wiscon, my feet started to get fat and pudgy looking. I frantically called my doctor, fearing I was developing one of those diabetes-related foot diseases that would result in my legs being chopped off.

He assured me the swollen feet were normal now that my body was getting back into balance, and should ease up and go away in a couple of weeks.

Nonetheless, I went to bed alone and cried. I needed some time to digest it all for myself, alone.

I don't want my feet chopped off.

By the end of day one of Wiscon, my ankles were so fat that it hurt to press the skin around them, and foot rubs were out of the question.

The swelling goes down at night, but puffs back up during the day as fluid starts settling in my lower extremeties.

I shuffled around Wiscon like an old woman.

I spent much of the weekend being "on," assuring everyone else - and myself - that I was all right.

"I'm fine," I said.

"I'm fine, I'm fine," the echo of a nearly comatose woman from the back of an ambulance.

There was much joking, good humor, and I blew through both my panels, including one that appeared to be a crash course in how to moderate a panel where pretty much everything goes wrong.

I met a ton of people. I even spent a night running the party rounds.

The most popular question, after, "OMG are you all right???" was "Have you met Liz Henry yet?"

Ah, venom cocks and mpreg. I'll save that for another post.

The thing is, I haven't had a lot of time to digest the fact that I don't have a working pancreas. I was in the hospital for four days, my mom was in town for a week, then my buddy Patrick and his family arrived (damn, I missed them!), then we drove up to Madison and it was Wiscon-burn time. Right up until Wiscon, I spent all my time making sure I was well enough to attend Wiscon. I didn't do a lot of thinking. I needed to be strong and competent because Jenn and my mom and Patrick were all so worried about me.

And... and...

I wanted to be strong for myself. I needed to know I could get up out of a hospital bed without a working pancreas and get my life back together.

Every night at Wiscon I shuffled back to the hotel and propped up my feet for the night so I could get in another 12 hours the next day. At which point my feet would once again feel like they were going to explode.

I realized that what bothered me so much about my feet was that I have no real external signs of being sick... except that one. All the weight loss is considered a *good* thing in this culture, so all I kept hearing from people (even my mom, who was well aware of why I'd lost so much weight) was how great I looked. I'm thinner but sicker than I've ever been.

I won't mind gaining 20 lbs or so if it means I'm going to be healthier, thanks.

Diabetes is great because, sure, you have to shoot up in the bathroom before meals, and those close to you will see you shoot up at home and see the bruises on your thighs, but to the rest of the world, you look healthy. You look normal. You can pass.

You can pretend you're not dependent.

But the truth is that when the apocalypse comes, I'm pretty fucked.

Now I need to write a story about a post-apocalyptic diabetic warrior woman who hordes insulin.


I let myself sink on Monday at lunch. I interrupted one of Jenn's negotiation sessions with the waiter about the price of a salad, and she snapped at me.

I teared up at the rebuke, and quietly cried and stared out the window.

Obviously, this isn't something I do often. It was totally out of character. Jenn was pretty stunned.

This kicked off two hours of silence in the car on the ride back. When I'm sad, I want people to leave me alone. I don't often interrogate my feelings, so if someone asks me what's wrong when I'm in the thick of it, I can't articulate myself and end up getting angry and tired. I feel pushed.

Me going quiet hasn't worked for any of my partners because, well, they love me and want to know what's going on. Jenn got pissed because I wouldn't tell her what I needed, and then I got pissed because Jenn was pissed, and when we stopped at a gas station, I went inside for snacks, came back out, and discovered Jenn had disappeared.

The car was locked and parked. I sat down to wait, thinking she'd gone for a short walk. I was a little worried because my insulin was in the car, and getting insulin over 88 degrees makes it go bad.

After a while, sitting there on the curb crying and feeling sorry for myself, I realized Jenn hadn't come back. That wasn't like her.

I went back inside the mini-mart, looked through the aisles.

No Jenn.

I checked the bathroom.

No Jenn.

I walked around either side of the building.

No Jenn.

I started getting increasingly worried. I circled the parking lot. I went back inside and checked the aisles. I asked the cashier if he'd seen a skinny brunette about yay tall.

He shook his head.

At this point, about a million things were running through my head. Jenn is little, but fiesty. I couldn't see her disappearing among so many people without an attention-drawing fight. But she also tends to believe everyone is good until proven otherwise, and I could see her trying to help somebody and getting nabbed.

I looked along either side of the building again. I stood out on the sidewalk. Went back to the car in case she'd doubled back.

The sooner I called the police, I knew, the better chance I had. I started thinking of all the terrible things that could be happening to her. I started thinking about what would happen after the police got there.

My insulin was in the car.

Sure, I had extra insulin at home, but not the long-lasting kind I take every morning, the Lantus.

Everything in the car would be ruined. My blood sugar would plummet in a couple of hours, but my glucose meter that tests my blood sugar was in the car.

Jenn was off somewhere being raped and mutilated, and I was going to collapse into a coma among strangers.

I went back into the mini-mart one last time. I'd give her two more minutes. Two minutes, and then I was calling the fucking cops.

I pushed out of the market for the fourth time, and there was Jenn walking toward me.

She'd been lying behind the building.

I grabbed hold of her and started crying again.

We spent over an hour sitting in the car with the doors open and talking. I'm terrible at expressing myself face-to-face. I can say, "I'm tired," or "I'm sad," but that's about the breadth of my emotional vocabulary until I've had enough time to work through what I'm feeling.

The thing is, since I learned about the diabetes, I haven't been angry. You can't be angry at an illness, and I'm not a believer in a God you can pray to and blame for things, so damning God wouldn't help. I can't blame my parents, because I'm the only type 1 diabetic in our entire family circle (my grandmother's sisters had children who are type 2 diabetics, in France, and my dad is apparently a type 2 diabetic, though he didn't realize that's what he was getting the pills for until I got sick). Type 1 isn't something I could have regulated with diet and exercise, so I couldn't blame myself (in fact, I was in really good shape, which is why it took me so long to crash. I've been getting increasingly sicker for the last 8 or 9 months as my body turned on itself and attacked its own pancreas). I'd like to be upset at Planned Parenthood for not catching it before I went into a coma - frequent yeast infections are one of the prime signs of diabetes. All that extra sugar in your blood encourages the growth of yeast (oh, I can't tell you how extraordinary it is to be yeast and irritation free after 8 months!). But when I'd go in there and they'd ask if I was tired, I'd say sure, I'm tired, but I'm stressed out because of X, Y, Z. Granted, all that weight loss should have clued them in. A follow-up question like, "How many times do you urinate at night?" would have gotten them to do a blood test. I was getting up 3-4 times a night, and water tasted sooooo good that I drank it like kool-aid on a summer day.

So I didn't feel a lot of anger. I still don't. What I sometimes feel is sadness. I've always taken great pride in my independence. I avoided forming relationships and partnerships that I thought were too close. Whenever I got too reliant on someone, I'd back off and work things through again to preserve my independence. I have a core group of fantastic friends, but I've never leaned on them. It creeps me out that if I would have been alone that Sunday night, I'd be dead. I was so out of it that I was incapable of taking care of myself. I realize that at some point, this happens to everyone.

But for fuck's sake, I'm 26.

"It's nice to see a different sort of face in here," one of the nurses told me as she wheeled me upstairs to one of the general hospital rooms. "We're used to dealing with people who are 86, not 26."

Oh, wheeee.

One of the most important things, for me, is to learn how to be as independent as possible while still accepting help from the amazing people in my life. When I came home from the hospital, I had trouble turning keys in doors and had to ask Jenn to cut asparagus for me because my wrists hurt so badly. My buddy Patrick did some Reiki on me while he was in town and bought me a stone whose qualities are supposed to be good for ailments such as mine (I love my granola-munching-hippie Clarion buddy). My mom took out the trash, did the laundry, paid for tons of meals, and offered moral support. Everybody wanted to help me.

But my fear, my huge fear, the fear that fuels the bouts of sadness, is that I'm going to turn into one of those enormous, swollen-ankled sick people who can't get out of bed. I'm afraid I'll turn into someone who gives up, someone who says, "I'm sick, I can't."

That's the scariest part of all.

I tested my blood sugar when I got up this morning, had a glass of orange juice to bring it above 70, and did my morning weights routine for the first time in two weeks. Obviously, I wasn't in prime form, and had to stop and rest more often. My three sets of fifty sit-ups turned into three sets of thirty, and I had to lower my 1 set of 15 for several exercises to 1 set of 10.

But I did it.

The stronger I get, the easier it will be.

I'm going to work out on the elliptical machine at home tonight after Jenn gets home (exercise can drop your blood sugar really fast if it's too intense) and do a lot of blood testing to see how my body responds to formal exercise, then pick back up at the gym next week once I figure it all out. I've been thinking more and more about picking up the boxing classes again as well. I miss it so much. It'll just be a little trickier this time around.

Because despite my bouts of occasional sadness, I realize I'm very lucky I got diabetes in 2006 and not 1906 when there was no such thing as insulin. I'm lucky to be alive. This is the second time I've died and had to re-evaluate my life. The first time, I rejected a life I didn't want, one that was taking me increasingly closer to ending my own life. This time around, my body nearly ended my life for me.

This is an opportunity. I feel a bit like a ghost, someone living on borrowed time.

The wonderful thing about borrowed time is that every second you get after you died is that much more beautiful because of how close you were to not seeing it.

That's an odd sentence, I realize.

It goes back to what I'd said all along about wanting to excel at things physical when I spent most of my childhood sedentary:

I'm just going to have to work harder than other people.

Really, that's the only difference. I have to work harder.

This isn't a stretch for me. I realized a long time ago that if I wanted to be a really great writer, I had to work harder than most people.

And I think I do, and will continue to do so.

I have such desire. I am so full of desire to do and be and see and taste and touch everything. I want everything. I want the big life. Still. Even now.

Especially now. Because losing it all is as simple as going to sleep and not waking up.

When Jenn and I got home, I started putting everything away, unpacked my books, set up my computer for work on God's War this week, started a load of laundry, watered my plants, and as I walked into the bathroom thinking of all the things I needed to do this week - gotta get back to the weights routine, a little at a time, don't push it, pace yourself, then the gym, don't push it, pace, go, be, do, finish God's War a page at a time - a sentence popped into my head:

She wanted back her strength, her stamina, her place at the head of legions.

In my book, The Dragon's Wall, there's a half-breed woman named Zezili, a legion commander who fails in her duty to the Queen and is viciously mauled by the Queen's giant cats. Zezili loses a thumb, the ends of her fingers, most of one eye, and acquires deep cat-scratches all over her body.

When she wakes up from her fever in her new, altered, nearly ruined body, her sisters are all staring down at her. They've gathered to watch her die. The Queen releases her from service, and tells her she can either choose to retire or renew her oath to the country.

Zezili's lying there in bed, her wounds swollen and oozing pus, looking out at her expectant sisters with her one good eye, and she rejects the Queen's offer to slink back to her estate and lick her wounds.

She wanted back her strength, her stamina, her place at the head of legions.

There are times when I don't realize how much of myself, of my deeper self, my core beliefs, I put into my writing. But when I thought of what I need to do now, of the way I have to approach the rest of my life, the stubborness I'd need, the desire, the passion, I thought of Zezili.

There's a piece of you in everything you write. You just may not see those peices that often.

I have no illusions. I'm going to be sad sometimes. I'm going to hate these needles. I'm going to wish for some other life outside a broken body.

But I'm going to get up every morning. I'm going to hike up to Machu Picchu. I will run around the world and back again (and again). I will be able to live on my own. And travel on my own, if need be. It's not impossible.

I'm just going to need to work a little harder.

Like Zezili.

Like me.

11 comments so far. What are your thoughts?

ScottM said...

Go Zezili and go Kameron. It sounds like you and Jenn made it through, so good on you both.

Patrick said...

If you and Jenn HADN'T had a fight at some point in the past three days, I'd have figured you guys were bug-fuck crazy.

So good on you for getting through it.

Keep fighting. I'll send Reiki footward when I can. :)

Anonymous said...

5 words:
Implantable Pump with Short-acting Insulin.

when you do the sugar check (which is frequent) you just push a button and the little box on your belt squirts a little insulin into you via a small silicone catheter.

A friend of mine really likes it. Excellent control, quite convenient once you get used to it. No injections. He got it a few months after becoming diabetic - first he learned the long-acting insulin routine.

It (box/catheter) might be annoying for certain sports, however. Box is about the size of a really small flip phone.


Anonymous said...

In 5 to 10 years there should be an implantable catheter/external box arrangement that tests sugars and dispenses appropriate amount insulin.


La Gringa said...

Talk to your doctor again about the edema in your ankles. They might be able to give you a very slight dose of blood pressure meds to reduce that, andd make it more comfortable to walk.

I get edema in my ankles from my asthma believe it ir not so I take a very very low dose of hydrochlorothiazide to combat that.

Kameron Hurley said...

Awesome. Thanks for the tip, La Gringa.  

Posted by Kameron Hurley

inkgrrl said...

You're gonna be okay. Wanting to be okay is the first step. I know that sounds facile, and I'm sorry I don't have a more profound way to put it, but your head is in the right place, and your body will follow. You can still have the life you want - as you say, you just have to work harder than some other people.

Liz said...

When I was pregnant my ankles swelled up horribly and my feet have never quite been the same. It's so painful!

those really tight support hose socks are good, and lying with feet up at any opportunity . flat on back on floor with feet on a chair. then you will be "one of those people who lies on the floor at parties"  

Posted by liz

Kameron Hurley said...

then you will be "one of those people who lies on the floor at parties"

Haa hahaa

You know, I think I could handle being one of those people.... particularly because I won't have the "she's just drunk" excuse anymore.

Damn the one-drink maximum and low blood sugar!!

Terri Hurley said...

I've never seen someone scale a climbing wall so effortlessly. You can do this.

Zan said...

I don't know that you'll have to work harder than other people, necessarily. You'll just have to work differently. That's what I finally had to figure out after I was diagnosed with Lupus. (I was 26 at the time, oddly enough.)

You're right -- there is absolutely no reason you can't have the life you want. But having a chronic illness means you have to sometimes figure out different ways to get what you want. Which bites, when all you want to do is just DO it already.

Don't be afraid to lean on other people and don't think doing so makes you weak. That is absolutely the hardest, and most important, lesson to learn. On the plus side, once the reality of being sick sets in (for me, it didn't really gel until about a year into my treatment when it suddenly dawned on me that this was a forever thing) it becomes really easy to decide what is or isn't important in your life.

I don't know if this will happen for you or not, but there came a point where I had to actively grieve for the person I had been. Because even though your illness is controllable and you can still have the life you want, being sick takes a toll on you psychologically. It's like the person you thought you were has died and now you're someone new. A stronger, tougher, (hopefully) saner you, but still...

Anyway, I don't want to be maudlin. I just wanted to say it is entirely possible to have a normal life with a chronic illness, although the initial adjustment phase is a bitch. Ups and downs are normal, it could take awhile to find just the right treatment plan, but it'll work itself out soon enough.

And your feet are still beautiful, because they are yours.