On Pain Management

So, I was diagnosed with Crohn’s disease when I was 19. Without getting into the grisly details, Crohn’s is inflammation of the lining of the gastrointestinal tract. According to the pamphlet that my teenage self was given, the disease disrupts the body’s ability to digest food, absorb nutrition, and eliminate waste (ugh, sorry!) in a healthy manner. (When people ask me what that actually means, I tell them it’s like chronic food poisoning. It’s better than the grisly details.) We don’t know what causes Crohn’s; current thinking is that it’s a type of immunodeficiency. There is no cure yet. I say “yet” because despite my natural pessimism, I have hope. For years I’ve had a news alert send me weekly updates, just in case the interweb finds a cure before my doctors do. So far, the interweb just sends me inspiring stories about sick children who are raising funds for Crohn’s research while I sit on my backside munching on cheezies and twirling my hair.

I’ve never met anyone else who has Crohn’s, unless you count those awkward chats with strangers in the GI clinic waiting room. I have met people who have a friend or a family member with it, though. Alfred the Great probably had it. (How excited was I to see gastroenteritis on the telly in The Last Kingdom?) Dwight Eisenhower had it. The lead guitarist for Pearl Jam has it. An NHL quarterback whose name escapes me has it. Shannen Doherty (Beverly Hills 90210) has it, but she don’t talk about it because it ain’t sexy. Apparently it’s her job to be sexy. Thank god I’m only a lawyer.

I pay attention to this list because it reminds me that this disease is not a barrier to achievement. If Alfred could stem the Danes’ invasion of Saxon Britain without toilet paper and Ike could serve as a commanding general in Europe during World War II, surely I can haul myself to the gym on a semi-regular business and chop vegetables for supper every night?

Well, even Alfred must have stayed in bed some days and let the Vikings burn and pillage at will. Because this disease frickin’ hurts, by times.

I remember the day that I understood I was going to have to change my relationship with pain. All my short life, if I had had an owie, there had been a solution for it. It usually came in the form of a chewable tablet, or sometimes as crushed ice wrapped in a dishtowel. Often it was nothing but a kiss better on the offending spot. But something changed when this disease arrived. I was hospitalized at the time, and one day I asked for pain relief. The nurse brought Tylenol, which was a waste of her time and some perfectly good Tylenol. I eventually asked my doctor, as she rapped my abdomen like she was testing a melon for ripeness, what gives? Sometimes it hurts so much it’s all I can do to breathe, eh? Can’t you give me something for it?

The response was not what I expected. On admission, I hadn’t even asked for Tylenol and they gave me morphine. Now that we had a diagnosis, something had shifted. Instead of pain relief, we talked about pain management. I was very young, she said. This disease was going to cause a lot of pain over the years, she said. If we start down the yellow brick road of opiates now, I’d be a vegetable before I could enjoy menopause. (Well, that’s not exactly how she put it, but that was the takeaway.) So instead I had to learn to manage my pain, she said. I noticed that a possessive pronoun had wormed its way in there. It wasn’t just any old pain now — it was MY pain. Someone had gifted it to me, like a white elephant. Like I’d had one too many in Vegas and woke up outside an Elvis chapel wedded to it. Or maybe it was some kind of de facto adoption, like a mangy stray cat that shows up on your doorstep and just won’t go away. In any case, I was stuck with it, and it was up to me to make the relationship work. Divorce was not an option.

It took me years to understand what she meant. My teenage mind was still boggled that there were diseases out there — other than cancer and HIV (it was the ‘90s) — that modern medicine couldn’t cure. The notion that there was no pill that could relieve the pain and leave me still functional was just icing on the cake. That I could even be surprised was evidence of how blessed my life was. I try to remember that when I’m what they call “having a bad day.” I mean, Alfred didn’t even have toilet paper and here I am whimpering about a tummy ache.

But I did learn what she meant by pain management, eventually. And what I learned is this: pain changes depending on your attitude toward it. It’s not all in your mind, but your mind has a lot to do with how you experience it. Fear of pain makes life hurt worse. It’s not just about “being a brave girl”. It’s about discovering that pain alone probably won’t kill you. It’s about learning not to panic, and above all not to go down the rabbit hole of focusing on it until it consumes you. I suspect that a scientist could explain why we fear pain: in general, it’s a sign that you had better stop what you’re doing (get that hand off the hot burner), seek medical attention (momma bear licks baby bear’s wounds clean), and rest if you can. And in my case, it may indicate that such nasty things are happening inside that a doctor needs to poke me with sticks (ok, tubes, actually). Or maybe it doesn’t. Maybe it’s just Tuesday, and I got stuff to do and people to meet. If it’s bad enough and it feels wrong, you make the call: something’s outta whack in there, I need to have someone look under the hood. But if you can take a deep breath and admit that you’re pretty sure that nothing’s actually killing you at this moment, that it just hurts, then you’re in management mode. It’s like a headache. Admittedly, I’ve had migraines that make me pretty sure that a demon is trapped inside my skull and we’d better drill a hole to let it out. But on second thought, I usually come to the conclusion that it’s probably neither a demon nor a tumour, and I don’t need to be afraid. Me, I have this trick of imagining myself floating like an incorporeal spirit over my physical body, floating above the pain, and that seems to help. It’s probably meditation. I dunno when I started doing it, but it does help me manage.

Don’t get me wrong: I’m still a wimp about pain. There was that scratched cornea that got infected and boohooing salt tears only made it worse. There was the time the dentist recommended that we fill a cavity without freezing and he accidentally nudged the nerve (life lesson: so that’s what a cold sweat is!). And then there was the time that a doctor excised my big toenail. “Excised” is a fancy way of saying he went at it with scalpel and pliers and I had all I could do to stay upright on the bed while the damned nail hung on for dear life. (In retrospect, I sorta wish we’d done that one in a hospital.) I wailed and moaned through all these experiences, and sooked for days afterwards. I think that’s pretty normal. But I’ve made a kind of peace with the pain from “my” disease. Kind of a “this too shall pass” approach. Some day, it might not pass. Or rather, I’ll pass before it does. Because not every kind of suffering can be relieved with a pill. And it turns out that that’s actually okay. I mean, it’s no reason to get out the party hats and whistles. But at least I don’t fear the reaper every time it hurts anymore. And I hope that when he does arrive for real, I’ll meet him with dignity and grace, and not mewling in pain. Of course, by that time, there will be a pill, staying functional be damned. And for all my noble protestations, I won’t be too proud to take it. Until that day, we manage.