Sometimes, to get the important parts of your life back, you need to get back to the people and places that have mattered most to you.
You need to forget about doing things the right way or making anything “good” and just embrace being in the moment, so that in those moments with the people and places that matter, peace will finally find you again.
When you go about rediscovering the world in middle age, you don’t feel like an adult — confident about what you know and comfortable with the things you don’t know. Suddenly, you know nothing.
I have joked to my husband that, for the last two weeks, I’ve felt a bit like Milton Wadams from Office Space, shuffling and mumbling as I reprocess each sensation and landscape — gravel under the feet, the plaintive sound of an orange cat needing to be petted just so, dishes arriving at the dentist.
Now, I’m actually learning to embrace the shuffling and robotic processing of sensory input. Rather than being a malcontented, midlife crisis, I’m trying to experience the world as if I were a child again.
My only source of malcontent has been how difficult painting has become difficult this week. The sensors still seem disconnected from output. Partly out of desperation (knowing that non-writing/drawing artist is a monster courting disaster) my post-labyrinthectomy journey of discovery seems to be bringing me back to my blog – my original writing and drawing diary.
Now, as I am watching every little detail around me, I mentally record the mundane and magical moments around our yard like a robot, searching, not for artificial intelligence, but authentic interaction with the world. This voyage of discovery will undoubtedly reroute my journey of creation.
When I was first diagnosed with Ménière’s disease three years ago, I was told that it was a disability that automatically disqualified you from multiple professions. Two years ago, I was told to stop using stairs taking public transportation by myself because likely and actual unpredictable “drop attacks.” I was told the disease would end when I lost my hearing in the affected air.
Last week, when I give up the hearing to prevent any more false, it would’ve been easy to see the change as a loss, as acquiring more disability.
Instead, the opposite is happening. It may take some time to be able to drive again, and the shuffling will probably persist for a while. That’s OK because the shuffling is part of rediscovery, and that will lead to a whole new chapter of creativity.
Scott, the person who boards our ancient mutt Katy, while we’re away, has taken to calling her Old Lady Katy. She’s over 13 and navigating the world as a senior citizen.
This week, missing my left inner ear, my entire life is about navigation.
Saturday, the Big Guy after took Thing2 to work, I decided to take advantage of a break in the rain and walk part way up our 900’ gravel driveway with old lady Katy.
Each old experience — something as simple as walking up the driveway- is brand new. Suddenly, I’m hearing my footsteps on the gravel in a different way. The field of vision jerks a bit more as I move from foot to foot.
I am doddering and feeling a bit like a senior citizen myself (I have many years before I will admit to being in that category.) It’s disorienting, but I suppose that’s what happens when the world is new. And how often do you get to discover a whole new world,let alone when you’re in your fifties?
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.
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.
Picking My Battles 