One of the weirdest things about Ménière’s disease is that when the weather, and the air pressure change, you can feel it. I know it’s not just me, because when I visit chat rooms of other people with this wacko disease, I see other people reporting the same exact symptoms, that, in any other forum would, be cause for being involuntarily committed.
Right now the wind outside is pounding, and, even though we’re in a house with walls of 10 inch concrete, and 3 feet of dirt surrounding it, I am rocking. My brain literally thinks we are wrapped in a hammock being tossed back-and-forth even though I am literally lying on my bed holding on the mattress, so I don’t fall off.
Are used to love blustery days, especially at the beach, standing at the top of a bluff, feeling the wind and spray blast against my skin. These days, however, it seems as if mother nature isn’t respecting my boundaries.
But the wind howling and bringing down trees outside have to be her way of reminding that there are some things you just can’t control.
This time last week I was voluntarily getting hit by the chemical equivalent of a baseball bat to the inner ear and brain to try and get some of my old life back, and, after a day or two of delayed side effects, did what any batter who gets hit would do. I took the walk.
Now, at the end of day 7, I’m slowly crawling to first base. The fog is starting to clear bit by bit.
I’m heading back to work tomorrow, regardless of the wisdom of that idea. I’ll be sitting on first, waiting for the signal to start running again, but, after the cathartic weekend of painting that preceded the bat to the ear, I know exactly how it will feel.
It won’t be a feverish productivity or blur of activity. It will be when the need to pick up the brush cuts through the spinning fog. It won’t feel like guilt for having neglected work or art. It will feel like a lifeline pulling me in.
Most of the time I hate Ménière’s disease. When you’re not being violently rocked as you try to get to sleep at night, you are hugging the floor trying to get the world to stop looking like a ceiling fan that gets stuck on a quarter turn, and then resets itself before Turning again. There are perverse times, however, like right now, When the salts and crystals in my inner ear, create the sensation of being on a an inflatable raft on Lake Michigan on a gentle wave kind of day.
In two weeks. I’m going into the hospital to have a procedure that will probably cost a good amount of hearing in the affected ear in exchange for getting my life back. The trade is going to make it easier to drive and work with some stability. Even though I won’t miss the vertigo and the falls, I’m trying to commit tonight’s gentle wave sensation to memory. It’s a lesson that even the things that make life really hard sometimes, can bring an unexpected smile to your face.
I used to think about December as the beginning of hibernation. Creative output always seems to slow down as the days get shorter, and work seems far more intrusive than it does in the crackling light of autumn.
For last last few weeks my output has followed the same trend. It took me a while to recognize the pattern because I initially blamed the slowdown the Ménière’s disease that’s been with me in earnest for a year now. Yesterday, though, as I drove down the mountain and had to stop and catch my breath as fast moving clouds dusted with powdered sugar the top of a mountain across the river, I realized that this time of year is not solely about hibernating.
To catch that moment, you would’ve had to be in the exact spot at the exact time with me. The peak of the mountain is almost hidden by two others that “overlap“ each other in the view that is only seen when coming down the road from our remote town to a “main“ route. The moment sparked attempts to repeats – something that shouldn’t be too difficult in Southwestern vermont in the winter – but it was the only one that day. The moment and the search germinated hours of wonder and reading and discovery.
What do I want to capture when I paint or draw? Moments of breathlessness? Revelations of the grit that lies at the foot of these mountains? Or appreciation of one the few places humans haven’t tamed?
Tonight will be occupied with the work of work, but in the back of my brain, the next painting session is germinating. It occurred to me that every racing thought, every quiet space that arrives with the dark of winter is not about hibernating through depression. Instead that darkness may just be the needed incubation for what will come next.
The alarm is set for 8 o’clock. It’s just past midnight, and I am staring at the ceiling, my eyes glued wide open. For once, neither I nor the ceiling are spinning, but nobody has managed to get the gremlins in my head to stand down.
The last few weeks have been defined by bouts of Ménière’s-related vertigo that have forced me to use a wheelchair to keep from falling down at work and to depend on other people to get me from point a to point B. At home this translates into far too much time spent on the couch watching reruns while mindlessly doom scrolling through text and images that I’m far too nauseous to absorb beyond a headline here or there.
When the fog clears, I try to paint – especially when the gremlin are keeping sleep away. Sitting and scrolling are becoming far too habitual, however.
This morning – it’s morning now –– I’m out of thinner for my paint. I’m desperate so I get up and fill the tub, grab the first book I see in my office and sink into the bubbles.
It’s not a novel. It’s a book about the history of English which turns out to be great. I expect to be engaged, entertained, and sooth, when I read fiction, but I’m surprised how relaxing it is to learn something new at two in the morning. I’m having the age old problem of not being able to put the book down, but it’s a different sensation from scrolling through toxic pages of social media posts.
Scrolling is turns my body into a clenched fist.
Each turned page, however, slows my heart rate. Each new factoid relaxes another muscle.
The book may keep me up all night, but I’m not worried about being worn out in the morning. The clarity that comes only from calm has helped me make a new rule. The next time anxiety tempts me to pick up the phone and scroll, I’ll grab a book instead.
I tested positive for Covid on Monday which wasn’t a huge deal (we’re all vaxxed and boosted, the symptoms are mild) but it was hugely inconvenient — until the break it enforced helped me find a needed change to disturb this winter’s rest.
Ordinarily, getting an extra week off right before spring break would have been lovely, but Constant vertigo is a fog. It’s an exhausting, involuntary hangover that turns a successful trip from my desk to the copier or kitchen to couch into an Olympic event. Almost daily Ménière’s attacks have sent me home so often that the word “disability” has been floated by doctors more times than I care to count.
The fog also clouds my identity. I feel like less of a mother, less of a teacher, and nothing like an artist. It was started to convince me that art was just a phase of my life that’s over.
A few weeks ago, my sister who had recently moved into a new house, texted looking for matches for framed photos I’d done a decade ago when I was still shooting weddings and portraits. I’d pooh-poohed my photos for a few years as I started drawing again. As I scanned dusty archives for a mate for this rose or that apple blossom, however, I remembered how much I enjoyed making them.
Yesterday, as I sat in the cool spring sun, the cats meditated on the chickadees swarming the budding lilacs. The dog lazed on the grass, occasionally lifting her head when she sensed a deer in the pasture beyond our woods. The spring sun warmed the wind and, for once, the rocking in my head made me feel closer with the rhythm around me.
I got up for a walk around the house, stopping to chat with the cats and dog who followed close behind. I examined branches, looking for incoming blossoms and studied the muddy mess that is my veggie garden after winter. My phone came out of my pocket and, almost mindlessly, I started to snap as I ambled, merging with the buds and even the puddles.
When my head started spinning last November, I felt myself detaching from work and life and, I thought, from art. But, as I snapped a branch or a racing kitty, I realized I can’t disconnect from art. Some people use art to comment on the world. Art helps me connect with it. It often helps me when I don’t expect but need it the most.
People talk about addiction as an illness, and it is, but a wise person in one of my classes once said that the opposite of addiction isn’t sobriety, it’s connection. I think that’s true with illness as well — the opposite of sickness isn’t a perfectly functioning body, it’s a life that’s still connected. Yesterday, for me, art — even in the form of blurry photos – was the opposite of my disease.
When Thing1 was diagnosed with ulcerative colitis six years ago, his doctor told us, “This is a permanent diagnosis.”
We thought we understood what that meant, but even after a year of unsuccessful treatment and the discovery that he would have to have surgery — not to cure but to manage his illness – we all had trouble wrapping our heads around the idea the concept of what a chronic illness really meant. Four years later, then one has changed his diet, his lifestyle. He’s learned to make his own appointments and monitor his own prescriptions, We think we understand what chronic means for him, but I don’t think I ever really got it until last Saturday.
For six days before, my Menieres had been remarkably inactive. I was still taking daily medication, still told myself that most of the “cure“ was due to the multiple injections in my ear. But for the last five or six days, I had so little vertigo that, the last Tuesday in February, I drove for the first time since just after Thanksgiving. I drove again on Wednesday , and then on Thursday. This was it. I was cured. I could plan for the next year of school at a district that requires a two hour daily commute. We can think about a vacation with a lot of walking.
And then a few days ago it happened, and I started to understand what Thing1 figured out the minute he learned that his UC wasn’t getting better and that he wouldn’t be going to college next week, that he would be dealing with it for a long time.
Saturday, I was watching the clouds roll in for another storm, feeling my ears pop and crack with the change in barometric pressure. I’d read other people with Menieres say the same thing and knew an “attack” was building. As the Big Guy and I made plans to go to breakfast while Thing2 was at his weekend job, I reluctantly handed him the keys, not knowing when I’ll be able to take them back again.
There’s very little good in what’s been happening, as far as I’m concerned, but the few only bright spots have illuminated the my way forward. That morning, as the world began to spin and rock again, I tried to focus on my memories of Thing1’s stalwart examples of acceptance and determination for the past six years. Those memories and the reminder that chronic often means permanent suddenly helped me truly understand my oldest son who, not for the first time, has often been my Northstar in learning how to navigate life challenges.
