When you have a chronic illness, you wind up seeing a lot of doctors. You start counting the number of times you’ve cried in front of a doctor. (At least twenty.)
Eventually, you start traveling to see doctors. Spending time and money you don’t have in the hope that an expert at the Mayo Clinic can fix your problem. Then when the Mayo experts are like “der, it’s genetic. Here’s even more drugs for you to take” you just want to punch them in their stupid faces. Or say “how about this. Why don’t I be the doctor and I’ll tell you I have no idea what’s wrong with you or how to fix it but we’ll just chalk it up to genetics and I’ll fill you up with toxic steroids and beta blockers and hope something changes!”
Today I got the third injection in my spine in a month. But that wasn’t the worst thing that happened today. At some point between arriving at the surgery center, going under anesthesia, and coming to, my phone disappeared. I had the phone when I filled out the paperwork (I had to look up phone numbers on it). Then when I was leaving, no phone. The nurse called the number and didn’t hear it ring, proof she used to convince me it wasn’t there. But I was out of it from being under and didn’t have the presence of mind to argue.
I always keep my ringer off. I’m not an animal.
It wasn’t till I got home that I realized — hey, my phone is gone and it definitely disappeared at that stupid fucking surgical center. Linden Surgical Center in Beverly Hills, if anyone wants a horrible outpatient place that will lose your stuff while you’re under.
Losing my phone makes me feel bereft. I know it’s not the actual phone — I can get a new phone. But spending an entire night, by myself, without my phone … I might as well be on a desert island. A desert island where my entire right leg is numb and painful from the epidural today, and my head hurts and I’m spacey and can’t focus and can’t drive for twenty-four hours. All I want to do is call someone — feel less alone — and I can’t because my phone disappeared into the black hole of anesthesia.
And because I’m a writer and my compulsion is to see meaning where none really exists -
I feel despondent about losing my phone. More than I should. Because now I’m in intense physical pain and I can’t call anyone, can’t text, can’t see who’s texted me, can’t flip through twitter, can’t see what’s on the calendar for tomorrow, can’t find anyone’s numbers -
I’m making it out like I’m on my phone all the time. I’m really not, not compared to a lot of other people. But the phone itself feels like a lifeline, when I already feel alone.
And more – losing the phone, having it taken maybe – brings up all the ache about what’s been taken from me, what I’ve lost.
Having a chronic illness robs you of time, energy, other people’s faith in your competence.
I’ve chosen to not really talk about it on here because I’m afraid people won’t hire me if they think I’m sick.
I’ve had chronic daily migraines for most of my life, and I’ve been working all that time. Every job I’ve had, I’ve had headaches. I think it’s a testament to my work ethic, my ability to just grit my teeth and muscle through pain, that I’ve done all that I have.
But I also wonder how much I’ve lost – how much faster would I have written my first novel, my first scripts, if I didn’t have a migraine 80% of the time. How much credibility have I lost? That migraines are suffered three times more often by women of child-bearing age takes from the condition’s legitimacy. A manuscript is judged to be significantly better if it has a man’s name attached, and my disease is judged more harshly with so many women’s names attached. Doctors imply it’s all in your head (which it is, I joke) and want to load you up with antidepressants, anti-anxiety meds, biofeedback. It’s like all doctors who hear the word “migraine” graduated in the 19th century and know how to prescribe a good corset loosening and the avoidance of upsetting topics of conversation.
This month I went to the Mayo Clinic to see their migraine “experts” and all I got for my trouble was an armful of new prescriptions and a spinal tap. The pressure of my cerebrospinal fluid was indeed a little high, so they reduced the pressure by half, removing four vials of clear spinal fluid (which they’re now going to test for infection.) But I got a migraine the next day, and the next, and the next … and by now my body has replaced the missing spinal fluid (and pressure). Now they’re saying I need another lumbar puncture.
The allergist thinks the migraines are an allergic reaction. The spine doctor thinks something might be off structurally with my neck. The GI thinks I may have a gut infection. The neurologist/headache specialist really doesn’t know what’s causing it but has some theories, including my large, hazel colored eyes which let in a lot of light. She says she sees three times as many hazel-eyed people in her practice as exist in the normal population.
The point I’d like to underscore is that I can and do work in spite of getting headaches almost every day. I feel like not talking about this is doing me a disservice as a human being – it’s sending myself a message that something is wrong with me (and not just in my head). When the fact is, this is a very common condition. This is this young woman’s experience, and if we don’t talk about the stuff of our lives (without fear that doing so will mean we won’t get hired), we may as well pack up and move back to the 19th century.
I’ve never missed a day of work because of this illness. But what I can’t calculate is – how much more energy would I have had without migraines every day? I can’t even see how long I’ve been under the influence of this — it started in childhood. How many nights would I have gone out if I didn’t have a headache, who would I have met?
It’s like every day I wake up from anesthesia to find my phone has been stolen.
*What I’m reading. I haven’t actually started reading this novel yet, but I wanted to put it up because this guy is paying for his chemo for melanoma with money earned indie-publishing his books. I wish him the best of luck and a speedy recovery. BASIC BLACK – A Tony Black Mystery
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Tags: migraines
