4:04pm July 21, 2013

"You’ll always be in pain…"

I don’t understand why that’s considered a fate worse than death either?

I mean I know there’s pain and then there’s pain. I can’t not know that, given I have a pain condition known as “the suicide disease". Because before treatment existed, lots of people offed themselves.

And I’ve been in that much pain. Before I got my trigeminal neuralgia treated, while I was waiting the month or so for treatment… I contemplated suicide often. The only thing stopping me was the pain itself and an intense survival instinct.

A friend and I have also both been driven to suicidal thoughts by intestinal blockages.

In both instances, I was not otherwise depressed at the time. I know pain can be a nightmare. Pain can make you terrified of the next time you’ll have that pain.

But the vast majority of pain can be treated in ways that get it down below suicide range. Not all doctors know how to do it. Some doctors will prescribe such high levels of narcotics that the drugs cause more pain. And instead of lowering the dose and switching drugs, they just pile on more drugs until the pain becomes unbearable. Other doctors are afraid to treat pain at all, or are afraid to use the most effective medications because of misconceptions about addiction. (Narcotics are generally by far the safest pain meds, for conditions they actually treat, and very few pain patients actually get addicted. Not joking. It’s been studied.)

But most pain, when treated with appropriate meds (which may involve narcotics, NSAIDs, steroids,  anticonvulsants, antidepressants, and other meds), and things like ice, heat, and lifestyle changes… can be brought down at least some. At least to something a human being can live through, even if our lives and even personalities are severely altered by it.

My cat has chronic pain, too. On bad days, she snaps if you touch her anywhere served by one particular nerve coming off her spine. She responds to steroids, but we try to save those for emergencies.

I can see that she has good days and bad days. But she still has DAYS, and that seems most important to her, as well as to me. And she still enjoys life, she just had moments where I can see she’s straining to function.

I have a staff person who luckily comes in rarely. For some reason, she thinks discussing cat euthanasia is nice light conversation. Her view is that any cat who has even the slightest illness, disability, or discomfort, would be better off dead. And that anyone who thinks otherwise is a selfish bastard who only keeps the cat around “for themselves". She goes on loudly and at length about this. I don’t tell her Fey has chronic pain.

I have lived with pain my whole life. I was not really treated until my twenties, when I went on anticonvulsants that do dual duty for pain and epilepsy.  (I discovered the pain connection as a teenager, when given them for epilepsy alone.)

I have trigeminal neuralgia. If my neuropathy is like my mother’s, then I have small fiber sensory neuropathy. I have gastroparesis with reflux. I have hypermobility syndrome which they say is probably why every joint in my body hurts. I have a straight neck, and my medical records claim I have degenerative arthritis of the cervical spine, although nobody has said those words to me out loud. I have middle and upper back pain. I have tendinitis. I have migraine headaches, frequently. I have muscle spasticity. Should I even go on?

Looking back, pain seriously altered my personality growing up. It made me short tempered and irritable. It made me dissociate a lot. I used to spend hours wishing for a kind if nothingness where pain wouldn’t exist, even though I didn’t know it was pain back then.

Even with treatment, my pain is severe and limits what I can do. Before treatment, it frequently had me bedbound. Which I am now for other reasons.

But it’s always with me. It’s always there. I’m always adapting my life and emotions around it. It never ever goes away. I can’t even imagine what that would be like. Because I’ve never been without it and probably never will.

But…I’m still me. I’m still here. I still want to be here. When people talk about how it’s wrong for someone to exist, because if they survive they’ll always have pain, I wonder if they know what they’re saying.

Because there’s no option for me to exist and not have pain. So I can either die and not have pain, or live and have pain. Life and pain are a package deal for me, like it or not.
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I think sometimes people imagine that if someone dies to avoid future predicted pain, then somehow that person still exists, but pain free? I don’t know how to describe what I mean. But it doesn’t work like that.

If someone with a permanent pain condition dies (or someone dies to avoid contracting the condition), they don’t get to enjoy their escape from pain. They’re gone. Even if there’s life after death, they’re not the same person as a living person would be.

So it confuses me. Because… the only way for me to experience all the wonderful things about being alive, is with pain along for the ride.  I don’t like it, but I accept that pain is inevitable for me, as long as life is inevitable.

And if anyone, once I die, utters that trite platitude that at least my pain and suffering is over, could someone please kindly punch them on my behalf?

I’m just… bothered by the way people throw around “but he’ll be… (cue dramatic music)… IN PAIN FOR THE REST OF HIS LIFE!“

Because unless the pain is extraordinarily severe beyond what that phrase is generally ever talking about, they’re talking about most pain experienced by people with chronic pain. Pain that totally sucks, may even be quite severe, but that we manage to live with without jumping off a bridge. As long as we get adequate medical treatment. Which a lot of us don’t.

And that means that they’re generally talking about people who enjoy being alive, or would with treatment.

And that means why make blanket assumptions that we are better off not existing at all, than existing in a way that happens to involve pain?

I feel like I’m talking around my point, rather than getting there, but maybe I’m making sense?

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