Songs for the Struggling Artist

Some Secrets of a Migraine Life

When I was at the height of my Teaching Artist powers, I kept an extraordinarily erratic schedule. One morning I’d have to be in Jamaica by 8 am, the next day, I didn’t have a meeting in Manhattan until 4. The following day I’d be in the Bronx from 10 and some days, I’d have gigs in all three boroughs. Some days I’d have no gigs.

I woke up at a different time every day, ate at a different time every day and was rarely in the same place two days in a row. I loved that no two days were exactly alike.

The fact that I once lived and thrived like this is hard for me to reconcile with my current reality. One of the first things I learned about living with migraine is that routine would be my friend. The more predictable I could make my life, the fewer migraines might hit me. I began to try and find the best rhythm and schedule for my body – and while same-ifying my life didn’t stop the migraines entirely, it did make a big difference. I don’t like it. I liked the feeling of never being in the same day twice back when I used to do that. But it is very clear that any disruption of my routine is a trigger for migraine.

The problem with maintaining a regular schedule is life. Life does not follow a regular schedule. Sometimes there are shows I want to see – and they happen at exactly the time I’d normally be eating dinner. This means whenever I see a show, I’m risking a migraine.

I have found that I function best on a schedule where I wake up mid-morning and go to bed late. It suits my biorhythm. I know what times of day are the most productive for me and I’ve organized my life to optimize those times. Unfortunately, most of the world operates at a different rhythm so…when I, say, want to hang out with a friend, I’m probably disrupting my rhythm and so every time I see people, I’m probably risking a migraine. I’m a little bit choosy about seeing people because not everyone is worth the risk, you know? But a lot of people are. And I’m happy to risk it. But it is not uncomplicated.

For me, now, (I hope not forever) migraines are inevitable but this hypervigilance about schedule and routine, probably keeps me from sliding back into a daily migraine climate. And just because the migraines are inevitable doesn’t mean I don’t want to avoid them. I mean, death is also inevitable, but I do try to do everything I can to keep it at bay.

In a lot of ways, this attachment to routine is the most debilitating part of having a chronic condition. It’s hard to explain and it feels shitty to always be weighing the balance of risk and value. It’s hard to know when to hold em and when to fold em, I guess. That is, to just go out and have a few drinks with friend, is highly desirable but the risk is also considerable. It’s easy to make that choice for people I already know and love but harder for meeting new people, trying new things – both things I need and want to do since so much of my network has moved away. The isolation is considerable. But sometimes necessary.

This kind of disability is invisible because to the outside observer, it just looks like I don’t come around so much anymore. Most people don’t see of the ice band on my head or the grey look I can get when the migraine storm comes through. Pretty much no one knows what this really looks like but my partner. And I’m not super inclined to talk about it. I’m not actively trying to hide it but there’s just not much to say. In my case, the threat of migraine is probably as disabling as the migraines themselves. The threat keeps me close to home. The migraines themselves send me to bed.

The whole migraine experience has slowed me way down – and not just in keeping me in routine and at home. The impact on my brain is noticeable. I’m not as quick as I used to be. There is a lag time now where there used to be an instant response. As a person who has tended to rely on my wits, this has been distressing. I can sometimes have trouble pulling up the right word right away. It’s not that I can’t recall it, it’s just that it takes a bit more time to bring it up from the bottom of the sea. It’s not that that had never happened before – it’s just that more and more words seem to end up at the bottom of the sea. My brain feels like it is under water sometimes. I’m not too too worried about it; we have done all the tests and investigated all the things and it really is just migraines. And I guess I’ve come to appreciate that sometimes slower thinking can be deeper thinking. It’s possible I’ve shifted from a rabbit brain to a whale brain, which might be cool. But I certainly find myself mourning for a time when my brain was more able to quickly come up with exactly the right word in exactly the right moment. We might chalk this up to aging, I suppose – but given all the spots of white matter lesions on my brain images, I am more inclined to suspect it’s been the relentless migraine climate in here.

So far, it’s just a matter of speed. I know if I can’t think of a word, it will come to me before too long. If I’m talking with someone, I will usually just ask them for that word that means X and let their faster brains help me so I can finish my thought. When I’m writing, I just write the meaning I’m going for and keep going so as not to dam up my flow. I try not to get hung up on the word snags – the speed traps – but I do worry about it, of course. Choosing words is a lot of what I do. Those who aren’t around me all that much wouldn’t notice it, I don’t think – which is another way this disability can remain invisible.

Like my routine that I depend on, it’s not a thing I’m trying to hide, it’s just not that obvious. I’m not not hiding these things either. When I get hit with a migraine in company, I’m not trying to put on a brave face or trying to hide it – I just have always put on a brave face and I would prefer for the migraine not to be happening, so I tend to fool myself as well. In company, it’s very possible I’ll never let on – again – not because I’m hiding but because my social impulse overrides my own comfort sometimes. I do my best to honor my brain and my body’s needs in those moments but I don’t always manage it – so sometimes I pay for good social times after the fact. Like, I have a great time all night and then as soon as I get home, I crash hard. I’m trying to be more visible about all this since I realized that this is a real disability and sometimes activism can mean showing things that have been hiding in the dark.

Anyway – I say all this because I’ve been opening back out into the world a little bit more these days and I find myself feeling like kind of a drag. Like, I really want to be up for everything and do all the fun activities when friends come to visit or do things differently for a while but I do have to be careful. I have to find ways to explain why I have to be careful and I don’t have a pithy explanation just yet. It’s taken me over a thousand words to explain this migraine climate here. I’d love to be able to live the way I used to in that devil may care what time I go to bed or what time I wake up or if I got any sleep at all but until this migraine weather system changes, I think it’ll be this new routine for a while and if I’m a drag, I’m a drag. And I don’t take gigs that mean I’d have to be in Jamaica by 8 am, that’s for sure.

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