I’m sorry. I guess that’s the first thing I want to say.
I’m sorry for scaring everyone so much. I’m sorry for getting defensive about people saying I shouldn’t freak out yet because “it could be nothing.”
Because apparently, it was, exactly, nothing.
I have written and re-written this entry in my head several times. I meant to write it kind of matter-of-factly and discuss the “results” and definitely apologize. But there is so much more to it. I have felt so many emotions, strong enough to feel them physically in my body. I’ve felt disappointment and relief and then LOTS of relief, considering aspects of even small treatable aneurysms that I was trying to ignore this past week. I’ve felt happiness in the girls’ responses, especially Zo, who threw herself into my arms with genuine uncomplicated joy. I’ve felt glad, and still do feel glad, to not be causing all the people near and far who love and support me to continue to worry and fear for my very life. And my life, though filled with pain, and now this apparently unexplainable numbness, tingling, and weakness in half my body, is good. It’s a good life.
John and I were terrified automatons as we departed to go pick up the report. I told him I wanted to look at it first, not have us peer at it simultaneously, and then I would hand it off to him. We parked by the helipad. John, looking at the short chain-link surrounding the landing area, said memorably “I like that tiny fence.”
We found the medical records office in the basement of the hospital and I presented my ID and filled out the proper form and just like that, a piece of paper – just one piece of paper, I remember thinking, with some typewritten words on it, was printed out and passed through the window.
“MR Angiography shows no aneurysm. Prominence of the tip of the basilar artery on MRI brain 1/31/18 is therefore due to partial voluming artifact.
1. NORMAL NONCONTRAST INTRACRANIAL MR ANGIOGRAPHY
2. MRA SHOWS NO ANEURYSM AT THE TIP OF THE BASILAR ARTERY. THEREFORE, FINDINGS ON RECENT MRI BRAIN ARE DUE TO PARTIAL VOLUMING ARTIFACT.
All the butterflies I’d had in my chest and arms turned to sludge and began to drain but uncertainty remained, especially for John. While I instinctively knew it was a whole big nothing, John was focusing on “partial voluming artifact” and saying firmly, “We need more testing. What is this. What is this… partial… whatever. That doesn’t sound good either.”
We began walking. I sighed. “It’s nothing. It means it was a mistake.” Mud dripping down into my stomach. Heavy feet. A sense of unreality.
“No, I mean, this says – ”
We exited to the outside through the first door we could find and I held the paper, focusing on each step forward like it was a dream, John rapidly tapping his phone. “Geez, it’s like hard to find anything on this. Wait.” He read something out loud that I easily interpreted as describing a certain type of common error with MRIs when the images weren’t sliced thinly enough, an issue with contrast and “voxels.” And maybe pixels.
“This means nothing to me,” he said. “But no aneurysm. That’s really good.”
“Yes. That is very good.” I barked a laugh. “But it was, like exactly, a mistake. They made a mistake. It’s the MRI equivalent of a shadow on an x-ray.”
“We don’t know that yet for sure but we won’t give up. You need a new neurologist. I’ll find you one. I have made sure to keep all my work caught up…”
“It’s going to be hard to find a new neurologist without new interesting information. They won’t want me to be on opioids. And I probably still can’t take Imitrex.”
“Maybe now that this possibility has been eliminated you’ll be allowed to again.”
“Maybe.” Walking. “This really was kind of my worst case scenario. It even says why the artery appeared enlarged. It’s not even a mystery we can keep looking into. And I still have no idea why I had those weird migraines and still have the numbness and tingling. Neuropathy. It’s just…”
“There’s never anything. Ever. How fucking ridiculous. I was so sure. My instincts were telling me something more was wrong, not necessarily an aneurysm but…”
“Something is. We’re not giving up.”
I sighed. Giving up is exactly what I wanted to do. Physical emotions like a California mudslide. I could feel all the anxiety and fear – and yes, hope, hope for a concrete “thing” that could be fixed, something to explain the new symptoms, an interesting problem to make previously bored neurologists sit up and take notice – slowly coalescing into a kind of deadening drifting miasma.
“It’s okay. We’re okay.”
The things partners say. The unfinished sentences, the shared thoughts, me knowing how relieved John felt but that he was not yet sure a voluming artifact was not a different kind of problematic swelling, John knowing exactly how disappointed I was and what good reason I had to feel that way even though there had always been the slight possibility that the MRA would reveal something really, really bad. John, who has been with me on my migraine journey for more than half of it now, during every significant change except the approval of sumatriptan when I was a sophomore in college and he was just turning thirteen.
[ Side note: I am starting to really dislike the word journey paired with illness. It’s not a fucking pleasure cruise or a road trip to the Grand Canyon, for God’s sake. One could say it’s a pilgrimage to answers and appropriate treatment, but what if there is no solution, or even a decent specialist, to be found? Does one then wander forever? In that case one who wanders IS lost. ]
“You still need to wear your special hat,” he said, referring to the knit beret I’d recently ordered with Zappos credit and how wearing hats for the past week had made me feel secure, like the potential aneurysm was being held in place with a big soft bandaid. “Everyone needs a special hat.” We got into the car and I leaned back against the seat, exhausted, pulling the bright blue beret slowly off my head with its perfect veins and ventricles, its subversive insidious secrets. “Do you want to watch a show? We can order food tonight.”
“I kind of just want to sleep for a long time.”
“You can do that. That’s a good idea.”
“But it’s true… we can just immediately get back to normal. That’s kind of nice. Things would have gotten real inconvenient real fast. The girls will be happy.” Already the slime of shame and disappointment was transforming to water and washing out, leaving me feeling lighter. I sent my mom, the most fearful of my whole supporting army, a quick text and googled “partial voluming artifact” myself as we drove the one block back home.
All the results were for professionals. The first one I clicked stated something like “… a common mistake most labs have learned to avoid by [something something] thinner slices and we no longer discuss it here.” UM. Next link. “Partial voluming is a result of contrast not separating between two [something something] resulting in the appearance of [something something] and possible incorrect diagnosing.” Artifact just meant glob of contrast not properly dispersed. Artifact. Historical evidence of a mistake. A remainder, a reminder. That nothing would ever change.
But change can be good and bad. At home we drifted to our separate safe spaces after an “it’s over” hug and clarification of how the girls were getting home from their respective schools. Taking my phone I drifted up to my room, my weak leg heavy on the wooden stairs, hearing Asia’s too-long nails doing their frantic clickety-clacking on the floor and John saying in his dog voice “Chill, Asia, yes, I’ll take you out. CHILL.” I slid my boots off and dropped onto the bed, my mind churning. Most likely I would have had mandatory medications to treat an aneurysm or even an unexplained swelling. Medications with possibly hideous side effects. Fatigue or insomnia at best; severe depression and more memory loss at worst with a lot of ick possible in between. Long trips to specialists located far away, trying to find and get referrals to those doctors; expense; and fairly constant worry. Waves of relief coming faster now. Brain surgery is never a good thing. Easier now, usually successful, but who wants to go through that? For a little respect from doctors? And maybe not even? A concrete positive test result, an actual physical THING, the repair of which might possibly not even fix the numbness and tingling and autonomic symptoms but certainly not the migraine itself. It would have been temporary vindication and then a LOT of pain in the ass. And literal pain that would be new. And possibly not having been allowed to fly home from the Health Union conference in March as planned, though I’d already been reimbursed for my ticket.
But god, I felt stupid. And frustrated. I needed to start telling people. I sent my friend Jessica a text, my mom hitting our relatives, Jessica being the next most worried and also available to get a message. “Oh praise God!” She responded immediately. Lots of big red hearts. “I’M SO HAPPY FOR YOU!!!!”
“Good, I’m glad you’re happy,” I callously responded, “But I explained to you why I wouldn’t be.” Radio silence. She hadn’t been following me on that the whole previous week. It is hard for anyone without invisible chronic pain to understand. I should have waited to talk to her about it, until I had more perspective. I described again how I had wanted something that could be fixed, for once, and she kind of got that and I made things right with her while messaging a few other people. I needed to write a blog post. Immediate blog post? Quick Facebook announcement first? I felt so dumb. But my having been defensive and sure about the MRI result was not a reason to keep worried people waiting. I took an “after results” selfie which seemed the obvious thing to do right then.
A text from John, who’d finally hit on the right medical site. “Partial voluming is just a common MRI mistake,” he informed me needlessly. “Not a ‘thing.'” We texted back and forth about mistakes being dumb and how it was really good we’d picked up the report instead of waiting for Mahmood’s office to call (they never did).
“A shadow,” I typed.
“Shadow vein, shadow pain” he responded.
I couldn’t settle. I went back downstairs to get a Coke. No more worrying about eliminating soda, at least. John was preparing to go pick up X. He leaned into the kitchen, hanging onto the doorjamb, a smile on his face I knew well. “I was kind of right though.” I rolled my eyes. He was the middle brother of three, all close in age, and takes tremendous glee in winning, no matter the contest. In his Denial Phase last week I had told him I especially did not want to hear him talking about the false positive possibility. Suddenly more serious, he said, “I was actually so worried about the brain surgery. You know they have to keep you awake?”
I felt my mouth drop open. “WHAT? Even with the filament up through your leg kind?”
“Yep. They have to make sure they aren’t messing with certain areas of your brain. You have to talk to them through it.”
“Um, no way, yeah, no. Jesus God.”
Back upstairs I contacted more people and took some meds.
Kerrie, a fellow advocate I’m especially fond of, responded on migraine.com’s Slack channel.
“Yay! And fuck! (How does one best convey, ‘I’m glad you aren’t at risk of imminent death and don’t need brain surgery, but I’m sorry you haven’t found an explanation for your shitty new migraine symptoms’?)”
Can you tell she’s a writer too? What a perfect response, and I wouldn’t expect any less from these people, my professional migraine tribe. Sarah: “I second what Kerrie said exactly!” Nancy: “What the actual f?” Lisa: “I’m in shock at this!!!!! I’m glad you’re ok though! But ugh!”
Another perfect response was from Tom, the president of our youth theatre board, on our group messenger chat.
“I hate that feeling when you’re supremely relieved, but still want to hit someone. Hard. I’m going with the ‘YAY’ side for now, but if someone needs to be hit, please tell me.” (He’s a writer too.) I confirmed that maybe my neurologist and the MRI tech could use a good punching. “Everything is legal in New Jersey,” he quipped, a Hamilton reference. This certainly seemed like New Jersey territory. Shawn: “So now the task is finding a new doc who will listen and figure out what’s going on.” This group of people are the friends I see most often in person, and it felt wonderful that they understood.
X came running up, her nimble feet echoing their particular willy-nilly cadence on the stairs. “I’m so glad!” She said, her huge brown eyes shining. We hugged hard, and I love hugging her, her chin resting perfectly on my shoulder and my nose in her thick purple striped hair as her height nears mine, our bodies fitting together perfectly, that kind of nurturing physical closeness that comes from holding a creature who shares your genes and once nestled in your womb. She pulled back. “But… it’s kind of bad, right?”
“Kind of. No. Not really. It’s pretty much all good.” I held her hands and explained the things John and I had talked about while processing, that it would have been nice to have a concrete answer to something but this answer would have come at big expense of multiple types. We sacked out on the bed and she chattered excitedly about a lot of good things that had happened at school, which was lovely, because days in seventh grade are not always (or often) good.
I continued to cycle through reactions and emotions. A general feeling of happy acceptance was slowly replaced by anger when my friend Leah was the first to point out “they made you go through all this scare for a glitch?” She finished our chat with “Love you… if you think there are answers elsewhere, find them.” Katrina: “Wow. A shadow? Would have been helpful to know that was a possibility.”
I responded “RIGHT?! I mean ‘It might not be anything’ means a lot less than ‘there is a common error that can frequently cause this sort of result.'”
I then thought about common magnetic imaging mistakes and if they are so common, how do we know the second test wasn’t the mistake? Yeah I know, false negatives are very unlikely. But no swelling and they assume a mistake immediately rather than “Maybe the swelling comes and goes.” or “One positive and one negative, let’s take a final look with a __________ test.” And Dr. Mahmood’s office never even called. And the autonomic facial response was so powerful during the angiography. And my symptoms matched so perfectly with basilar aneurysm. And my mom asked that if there were going to be a next investigative step, what would it even be?
Which leads to my final mood of the night: resignation. Not one of them really cares. No one in the medical profession seems to care about migraine and some stupid numbness and tingling. The clinical trial doctors cared enough to recommend an MRI, now I’ve had one and all is well, right? What more can I fucking do? If the doctors don’t care, why should I? Why fight? Why keep trying? Around 2015 or so I accepted my illness as my life. I stopped struggling in the raging river and built a raft (see migraine.com article). I don’t want to jump back into the rapids and swim upstream. I just want to return to my little boat and go back to floating. Floating is definitely not exciting and it takes a really long time to get anywhere. But at least I’ll be warm and dry.