It’s been two weeks since the MRI. One and a half weeks since the results: Normal. Normal. Unremarkable. Normal.
No edemas. No infarcts. No tumors. My brain is clear.
No cancer. Nothing structural that would cause these symptoms.
They are exclusively electrochemical, and they will not kill me.
I had expected good results would lead to a terrific high. I guess I thought that I’d climb onto my balcony railing and shout out into the trees that I was fine. I was going to live! Not going to die yet, motherfuckers! A fist raised to the sky.
But when it came right down to it, I got the results in MyChart, which listed each finding in tidy, business-like fashion. Another point on a meeting agenda. A list of what they had looked for and hadn’t found.
And what is the absence of something?
Just a space to be filled. There wasn’t time to get philosophical. With management changes at work and adjustments to project deadlines, that absence filled quickly with the substance of life. Cleaning the toilet. Chopping onions. Filling in Excel spreadsheets for my employer. Letting friends and in-laws know the MRI news. And 12 days straight of work.
This is my first day off since the MRI, and I think I’m too tired to feel much of anything.
And I think this is part of what chronic illness does to you, too. It makes you numb because it makes you tired.
The vertigo began when I was 31, but it was years before it was correctly diagnosed as a migraine symptom rather than BPPV. And within just a few months of the correct diagnosis, it had already become chronic.
One of the last days I tried to work a job out in the world was back in late fall 2015. The cold was too sharp, the traffic too noisy, and the sunlight too bright. I was walking down the sidewalk to a bus stop, and my world snapped open like a fan and twirled. The city became a pinwheel. I couldn’t see what was in front of me. I couldn’t feel the concrete underfoot. So I reached out and felt for the lamppost I had just passed. I found it and wrapped my arms around it, to keep myself from wandering into traffic or bumping into other pedestrians. And I stayed there, hugging cold steel, until I could see anything other than a spinning blur.
Since then, I have spent hours and hours in waiting rooms and consultations, check-ups and physicals and specialists offices. I have been screened for breast cancer. Had an echocardiogram. Tried acupuncture. Physical therapy. Massage. Yoga (which, with all the bending and rotating, only intensifies the nausea). Therapy, especially CBT. Abortive and preventive medications. And now an MRI.
Maybe my symptoms haven’t shifted at all. Maybe they’ve just worsened. The heart palpitations and nausea, the trouble speaking, the debilitating weakness and fatigue, the tinnitus and balance problems. Maybe all along it was migraine with brainstem aura, and the blackouts have just completed the picture.
I don’t know.
I’m not sure anyone can know.
I just know this is what it is now, and it’s good news that it isn’t anything structural. It’s just my brain being itself, acting up when it gets overstimulated.
But maybe, through the fatigue and brain fog, I do feel something. The last two months, since I’ve started Ajovy, I’ve had days when I recognized my own brain. It was the brain I had at 30: lightning-fast, adept at multitasking, able to spin plates upon plates upon plates. Reading Cervantes, I could read a sentence and remember a line from Shakespeare, a quote from Dr. Echevarria’s lecture on what he calls “The Quixote,” a painting from Velazquez, and I could tie it all together and see the world.
My mind opened vistas to me, let me stand on the peaks of what other artists had achieved and see what they had built. And I loved it for that.
And then I lost those vistas, and my world closed down to four walls and a computer screen. I can’t remember words. Some days, I can’t remember my phone number or my address. I have fought hard to open the world back up again, and there have been days and weeks and even months when I have succeeded. But it is not the same. And I wondered what was the point of my life if I had to live it dumbed down.
But now, I have had a few days when I can see further than I have in years.
And while it’s thrilling, I realize there are beautiful things about the other days, too. My chronic migraine brain is not so tidy. It is, in fact, chaos. My mind, most days, is postmodernist. A teacup lined with fur, set beside a washing board, a single tattered shoe, a face painted onto a dinner plate with lipstick. On other days, my brain is a canvas overcome with the Orphism movement of Sonia Delaunay, her paintings like the shattered light that passes through a prism and sprinkles the walls.
I hadn’t been sure that I would be torn up about a cancer diagnosis. I didn’t know how I’d react. But I suspected it might be a relief. I was only half-alive anyway. It might be nice to just get it over with. Lay down this endless struggle to find the best treatment, to win back more functionality and to hang onto it. I’m only 38. At 30, I had looked at the average life expectancy for my generation with enthusiasm. Maybe I’d even make it to 90! But now? I wonder if I can keep this up for 50 more years.
But after the blackouts and the MRI and the possibilities I safely passed through, I feel a tender affection for my brain. In any weather. After a few clear days and the guarantee—for now—of a good shot at a longer life, I don’t know if it’s so terrible to have a mind that is only half there sometimes. My mind used to be so exact and precise, so sure of itself, and this left me too tightly controlled as an artist, too out of touch with emotion. But the chaos is rich with possibility. Lewis Carroll used his migraines in his writing and created new language that forever altered English.
Disability is not always loss. Death is not better. It is only ableism that has left me believing that. If I cannot be healed, if I can write but only slowly and wildly, is not 50 years still too short a time? Do I not also live in a Wonderland, where each day is a reminder of the brain’s fragility and the tenuousness of its perceptions?
Don’t millions worldwide ingest dangerous substances to experience, only briefly, the same hallucinations and loss of control and emotional power that is the way I live?
No, I am alive. And I am happy to be alive. I am glad there was nothing to the MRI, and that I have to stay on this journey, probably to the last breath. Chronic migraine has limited my life in many ways, but in others, it has opened doors to worlds I didn’t even know were there. Migraine, it may very well turn out, may be just what my art needed.
And I think, perhaps, this is gratitude.