The Other Side of the Spoon
Last week, the university where my husband is an instructor held a “teach-in” about the opioid crisis. Mainly populated with speakers from mental health agencies and youth social workers, the two-day long program was missing a viewpoint from the other side: that of chronic pain patients who are having a newly difficult time getting their needed medication. John asked me if I would want to speak, with him, as part of the program. I didn't feel I could say no. Besides, he asked me back in May.
Nerves and a migraine before the presentation
September came very quickly. John prepared a power point presentation crossing out a word of our given title, “The Other Side of the Coin” and replacing it with “Spoon.” Of course that morning I got a medium-grade migraine at work at the library, and was a sweaty, brain-fogged mess by the time my medication kicked in and I got home with only an hour until we had to leave. John assured me he would do most of the talking and refer to me for some things, and if I didn't feel comfortable I could just pass it back to him. “He's a lecturer,” I thought, “he tosses off 75 minute presentations like nothing.” He showed me the flyer with our names on it. “Elizabeth Roberts-Zibbel, national advocate and writer for Migraine.com.” Yikes.
Explaining migraine through the spoon theory
The room was bigger than I thought it would be. More chairs. John put a page of our graphic novel “Migraine 365” up on the smart board, and the room started to fill up. We planned to start with an explanation of blogger Christine Miserandino's spoon theory and actually pass out plastic spoons. Our goal was to make our audience, mostly college students and instructors, understand what it was like to have, and to care for someone with, an illness that never goes away and is frequently painful and always fatiguing.
Discussing migraine treatment options
We discussed other ways to handle chronic pain, like meditation and biofeedback. We discussed new developments like CGRP antagonists, and old developments like the triptans and pitfalls like Excedrin migraine. The audience participated and looked empathetic and interested.
Near the end, I tried to summarize our purpose, which was that we, John and myself as well as most of the chronic pain community, agree with many of the new limitations placed on the use of opioid medications. Someone who has knee surgery doesn't need 90 oxycontin to either create an addiction problem or sit in her medicine cabinet for her grandkid to find and distribute. But people who are in pain every day do need to be able to continue to use the medications that help them, particularly when used in conjunction with other medications and natural remedies, and with a trustworthy medical team that works together.
Wanting to be able to live
An audience member asked whether I expect to be cured at some point, and I got a little choked up. I told her no, I don't expect to be cured, as there is no cure for migraine, and I also told her that I no longer expect to get significantly better. I hope that the CGRP antagonist I am taking will increase my quality of life, but most of us using it still have nearly the same number of “headache days” we always have, at least so far, though that pain might be easier to treat. I told her that my pain specialist had just asked me what my goal of treatment was, and that my answer was the same as it's always been: I just want to be able to live, and be happy. That's all that anyone can really ask for.
Have you shared your migraine story with us yet?