This has been one of the hardest fall-winter periods ever in my life.
My son, still a kid, not even a tween, has had severe unspecified abdominal pain for ten weeks now. Relentless, all-day-long, crippling abdominal pain.
In a ten-week period we have lived through:
- 3 emergency room visits
- 2 different hospitals
- 4 urgent care visits
- 5+ pediatrician visits
- 7 rounds of blood work
- 2 abdominal x-rays
- 2 CT scans
- 7 different kinds of medication
We still don’t have a diagnosis. “Everything is fine,” the doctors say, “he’s in great health!”
Well, no, you idiots, that’s why we’re here in the emergency room again. You mistake the map for the territory. The test does not determine his health; the test is to diagnose the bad health. The reality of the health is in the body. And his body is clearly not fine.
There is no correlation to, or change induced by changes in diet, eating, not eating, drinking, not drinking, position, pressure, manipulation, sleep, activity level, time of day, medication of any kind, or anything else that we can find. The pain is its own reality, and it is not subject to ours. It does what it does and nothing changes it—something that nobody seems to be able to believe beyond he and his immediate family.
There are few things so difficult as watching your child suffer for hours and hours and hours on end, then watching it turn into a week, then two weeks, then a month, then two months—in going to emergency rooms over and over again and waiting for hours in a waiting room in the middle of the night while someone suffers, barely able to speak coherently at times, and then being told “there is nothing we can do for you, you’re fine!”
— § —
Some things I’ve learned about the medical profession:
- They work from a short list of possible diagnoses; if you don’t match any of them, they insist you are “fine”
- They do not read charts or case histories, ever; all that typing is for no purpose
- They do not follow up, ever, no matter how much they say they will call you
- They believe that all children and all parents are liars or enjoy histrionics
- They are certain that children suffer from one condition—constipation—above all others
- They do not believe in zebras, only in horses
- They do everything in the most expensive, time-consuming way possible
- They don’t care all that much; only superficially, and only while you’re in the room
- They remember nothing about you, even if you’ve seen them forever; you’re a cardboard cut-out to them
- You can pump tens of thousands of dollars through the system on something as simple as a stomach ache and end up nowhere
It’s been a clarifying experience. As a scientist by training, I have not traditionally understood the logic or appeal behind “alternative medicine” in all its many forms—but now I do. It’s not about the medical practices; it’s about the human interaction—the fact that in alternative medicine, someone might listen to you, remember who you are, care to investigate. Even if they’re wrong or full of woo, at least they are paying attention to you in some real way.
— § —
We have now taken matters into our own hands. We are cutting every allergen possible out of his diet, and dosing him with antihistamines and anti-inflammatory supplements.
We are trying to figure out ways to get him back into school despite the pain or to get him learning again in some other life configuration.
Meanwhile, time is frozen. It is still the start of November to me.
— § —
Apologies to anyone I’m not talking to or being responsive to. Life is hard.