I have severe chronic migraine. I hate severity levels for everything, but given that my doctors repeat the word severe to me every appointment about my migraines in order to make me actually take myself seriously, I should actually recognize that.
Anyways. I have severe chronic migraines. The type which has gone from chronic to you have symptoms 24/7. The type that come with auras that are weird enough to have multipage long lists of symptoms. The type where your emergency room knows you as a regular patient from you showing up and saying you're there for a stroke check, you know its a migraine, but protocol demands it. The type where you're med resistant and have a doctor say that you've tried every known option, including the unusual options, beyond those which are contraindicated for your case. The type which has you see your neurologist frequently enough to know his favorite breed of dogs and taste in video games because you get to know him as a person, from being there so frequently.
And I'm used to it. This is how my life is. This is how I know how to exist. This is my norm. This doesn't mean I won't keep trying to find better treatments for myself, or work on more coping skills, or build better structures into my life. But it means that my baseline is severe chronic migraine. It means my expectation is that you never know if you'll randomly have half your body go paralysed. It means I won't go anywhere without carrying a backpack full of different tools in case I need them. It means this is how I know how to live, not only in that I have the skills to live like this because I have to, but that this is how I expect to live.
So when I found a medication that actually worked? Something that wouldn't be considered a med failure, even if it was something worth taking because it did enough that I didn't want to drop it out of my treatment plan. I didn't respond with excitement or even with fear that it was a fluke and would stop working in a month or two. I responded with a breakdown of I didn't understand how to exist.
CGRP antogonists for me don't reduce the number of migraines I get, but reduce severity enough to be considered a medication "success". Before aimovig came out we'd been waiting because I had run out of options. With aimovig, I had reduction in severity enough to have a meaningful difference in day-to-day life. My peak severity was no lower, but my average was and that was something I didn't know what it was like. I'd been trying meds for years. For something like a decade. And then something actually worked.
I fell apart.
I didn't know who I was. I didn't know how to compensate for the number of things I never got a chance to learn because people would assume that I would pick it up and I was too busy trying to survive. I didn't know how to navigate with the sudden change.
Sure it was positive. Sure it was something I wanted.
I still fell apart.
It's not just that positive change is still stressful. It's not just that positive change is still hard. It's that when I say I wouldn't take a cure for migraine if it was given to me, I mean it. Because I literally don't know who I am without migraine. Would I wouldn't I take a cure? I seriously don't know. It's not a thing I'd seek out as much as I'll try to navigate improving functioning as I am. But I can tell you for certain that I literally don't know who I would be.
Migraine is part of the essense of who I am. It's pain and its overwhelming and its my brain making up the most bizarre of symptoms sometimes. But its part of what makes me me. Because its been part of who I am. Because its part of who I have been. Because how you grow up and who you are and the experiences you have can't be just separated out. It can't be this isn't part of the essence of me.
I have severe chronic migraine. That means it has to be part of me. Because its so intertwined with every moment of every aspect of every thing I do. I can't make decisions without taking into account how I'm doing in the moment and how I might be doing in the future and what might trigger me and what sorts of ways might have me flare without me knowing the trigger. I can't eat or drink or sleep or lie down or stand up or sit in chairs or walk or choose my wheelchair instead of walking or speak or choose high tech AAC or choose low tech AAC or literally anything people consider the basics of life, without it constantly having a background process of migraine now, migraine future, migraine potential. It's always there. It's always part of me.
It doesn't have to be something I like to be essential.
It doesn't have to be all positive or all awesome or something I'd choose to be essential.
It just is. It just is because I am this way. Because I have no choice about being this way. And if you stopped and changed me. It'd change who I am. It wouldn't be making me me without migraines. It'd be making me someone else. I might choose that - I'd be allowed to choose that. Some of my chronic illnesses I'd without a doubt choose that. Migraine I literally don't know because its the one which is the most entwined with self the most I can't imagine existinig in any other way, the most this is my brain. This is my bodymind. This is who I am.
People talk about cure like its all or nothing. Like its you want to be cured or you don't want treated. Like you must want a cure or you don't think things are disabling.
It's more complicated than that.
It has to be more complicated than that.
You can't live things that are all encompasing changing every sense of your self and being and life and making it part of every moment of every day and make something as complicated as changing that or removing that be simple. It just can't be. That's my life and self and being and everything.
People assume that I would trivially want cured of my migraines. They can't imagine the idea of falling apart and spending extensive time in therapy working on the how disorienting it is to have a treatment that works when working is still having 24/7 migraine symptoms, just less severe. Because that's what it is, disorienting. It's great to find things that work. And its disorienting. It's confusing and overwhelming and so much more than just this makes me feel better.
Because when this makes me feel better comes at the cost of I don't know who I am that's a big cost. It's a cost I'll sure choose sometimes and spend that time finding myself. But its a cost and a big one.
Every time I figure out big things that have big treatments and others are like that's so exciting. It's like, okay, but it's also disorienting and scary and so very much more than just exciting.
And it's not that I don't want treatment. It's that I'm not some abled person trapped in a disabled bodymind. I'm a disabled person with a disabled bodymind. I have all sorts of messy relationships with myself and the world. I am terrified of existing in a hostile world. I'm exhausted by the pain. I'm overwhelmed by the confusion and neurological nonsense. I'm scared of not being able to trust my body. And this is still me.
I'm still me, not some person trapped here. I'm still me. Who has this body and this mind and this bodymind. I'm still me who has the essense of self intertwined with my disabilities, including ones that others might not guess.
Because its not just there's This Thing which is part of self and That Thing which can be separated. You can't split it up like that. You can't tell us what our lives are.
I've heard too many times that migraine is something you could just split out of a person and cure as some kind of gotcha in discussions about cure.
But no. It's not like that for me. Migraine is part of me. Migraine is part of my life. I exist no matter how overwhelming the world is and no matter how overwhelming my bodymind is. I exist.
