One of my most hated symptoms of Superior Canal Dehiscence was brain fog. I still hate it most. I don’t have brain fog (except for the normal kind one gets with a bad head cold) but it turns out I live with the echo of brain fog.
The other day I participated in cognitive testing. My surgeon is working with a researcher who is researching pre and post op cognition. After my first post-op test one thing was very clear: I don’t trust my own thinking. I think a lot better. I just don’t think I think a lot better. I have fallen into the habit of assuming my brain doesn’t function well.
I have a psychosomatic brain limp.
And a head cold.
I’ve always liked the improv rule of saying “yes.” When I apply it to life in general I call it “Edie’s Rule” because my husband loves to talk about how his mother always kept a positive outlook and how she was always right about things turning out well.
Harold Ramis meant to be giving filmmaking advice here but I find it very universal.
You have to live your life with a certain blind confidence that if it’s your destiny to succeed at these things, it will happen, if you just continue to follow a straight path, to do you work as conscientiously and as creatively as you can, and to just stay open to all opportunity and experience. There’s a performing motto at Second City…to say yes instead of no. It’s actually an improvisational rule…It’s about supporting the other person. And the corollary to that is if you concentrate on making other people look good, then we all have the potential to look good. If you’re just worried about yourself—How am I doing? How am I doing?—which is kind of a refrain in Hollywood, you know, people are desperately trying to make their careers in isolation, independent of everyone around them.
Since my vestibular rehabilitation (relearning balance) started I’ve had what I like to call “getting better headaches” and the blues associated with slow improvement compared to magical unicorn healing. (Magical unicorn healing is that belief that a pill or a surgery will “fix it” without any effort on the sick person’s part.) Sometimes I even feel oppressed by my own inability to think clearly.
I hate not thinking clearly. It’s particularly hard when I know my work is almost entirely brain based. Today as I walked to work after my balancing appointment I had a long conversation with myself and came to this conclusion: I may not be the sharpest crayon in the box but I can be there, handy and helpful and hard working. So that’s my goal. Even on days when I feel like I’ve taken two steps back on my way going forward I can still be Handy, Helpful, and Hard Working. I can say “Yes.”
Besides all that I love the part where Harold Ramis says “And the corollary to that is if you concentrate on making other people look good, then we all have the potential to look good.” It’s really worth repeating. I may feel off but is it really about me or is it about we? I think it’s about we, we the group I work with, we the company, we my husband and I, we my family, we the city, we the world. Let’s all look good. Let’s all cover for each other and do as well as we can.
So there it is. Yes & We.
Today I asked what vestibular symptoms should clue me in to cancel an appointment with the vestibular rehabilitation therapist. She said, “Things like not wanting to get out of bed.”
It’s February in Oregon and the rains are in full swing. No one wants to get out of bed.
I think I need to ask my husband to turn on the full spectrum light in the morning when he leaves for work an hour before I do. My own little private sunrise.
That said I love the look of rain, the feel of rain, and the way rain brings Spring on. I wouldn’t live any where else.
And I feel a bit of the retraining my brain stabby pain from doing the tests today. People on the support group all talk about needing to do the exercises but no one discusses the stabby dull ache my skull piece is going to fall out I don’t care if it has titanium mesh to hold it in head pain. I suppose I should ask. After all the support groups are half “is it only me?” Maybe another day when I feel like managing responses. Conversations online need tending. Meanwhile ow.
UPDATE: Having the early riser in the house turn on the full spectrum light like a fake sunrise works.
Vestibular Rehabilitation Therapy involves teaching my eyes to look at objects around me. I added pictures of the exercise pages to my Flickr set SCDS Experience.
Doing the exercises gives me a new awareness of how I have used the various parts of my body to compensate for not having balancing feedback from my right ear. My muscles memorized what I thought was upright. I actually tend to lean backwards a little. My eyes tend to remain unfocused so I can have a blurry horizon line at all times. Focus on one object and it bounces around as I walk. Given the key role my eyes play in telling me how I stand that bouncing means I feel like I am bouncing and seasick. Unfocused eyes were always the best bet.
Now I can “hear” which way is down with both ears I need to reteach my brain to listen to my ears and let my eyes to act like eyes not crutches for ears. Oh, and tell my muscles to relax and behave fluidly instead of rigidly based on memorization.
I got a lecture from my vestibular rehabilitation therapist on not pushing too hard. I need to used my cane still. It provides safety in case I get overly unbalanced. It also provides a fourth source of data to help retrain my brain: touch.
Today when walking in a rare February sun break I did my best to focus on single objects while walking. Definitely an advanced course task for a beginner to take on. Still, I always did like to work ahead in courses. I just have to remember to continue doing the small tedious tasks given to me.
I just got a link to a fellow SCDS blogger. Check her out.
There’s a fair amount of worry over writing about health issues in a public sphere. Potential employers or health insurance companies could easily mark me as broken, though I prefer to see myself as mended or kintsugi.
I can write about balance and the importance of sharing my experience, from the relatively quick process of discovering what was ailing me to the long slow process of recovering from surgery and getting back in shape. I do have altruistic feelings about this. I feel sharing my experience may help or edify others.
I also feel like this:
Apologies to my mother for the momentary vulgar language but it really ecapsulates the importance of speaking my individual, strange and not always perfect truth.
ACLU, EFF, and I all agree. Mass surveillance is bad. Just say no. Privacy matters. If you wonder why then consider this Wired article.
Base Savory Ingredients:
1 1/2 cups all-purpose flour
2 teaspoons baking powder
1/2 teaspoon baking soda
1/2 teaspoon salt
6 tablespoons butter, melted
1 cup whole milk
Special Muffin Ingrediants:
1 cup frozen spinach, thawed & squeezed “dry”
6 oz Feta cheese
1 cup pine nuts
Preheat oven to 350 degrees F. Fill muffin tin with cupcake wrappers.
Mix the flour, baking powder, baking soda, and salt together in one bowl.
Stir the melted butter, egg, milk, spinach, and feta cheese together in a separate bowl.
Add the flour mixture slowly to form a batter.
Add the pine nuts and give a final stir.
Use a 1/3 cup measuring cup to fill each cupcake wrapper.
Bake until a toothpick inserted into the center of a muffin comes out clean. Approximately 35 minutes. (Know your own oven.)
Future note: Try adding caramelized scallions with the spinach!
Categories: food, recipes
It’s snowing in Portland. Has been since Thursday. Before I begin showing off snow pictures like the rest of the city, here’s a little reminder as to why not to drive in Portland in the snow. You may be able to drive in snow but most of the rest of the city cannot.
The snow started Thursday:
The snow today:
I recently upped the difficulty level on a video game I play a lot. I like the challenge.
A while back John Scalzi wrote about how various things effect the difficulty level of life.
A lot of people comment on how rough I’ve had it with my health lately. I agree. It has been difficult. I wouldn’t choose it and I wouldn’t wish it on anyone. The sick part was bad enough and now recovery has aspects both boring and challenging. A head cold will still wipe me out when sinus pressure meets surgery site.
If I focus on the challenging part though this whole experience becomes something interesting. What helps improve my health, what makes it worse? How can I grab back the life I want? What about life has changed such that I want to do more or less? A health scare really helps set priorities.
Going back to work exposed me to germs and got me out in the cold weather freezing my poor nose. Of course I’d catch a head cold. Sick, bored, unimaginable pain in my head. It’s very tempting to wallow in sad. I’m working very hard at staying focused on the interesting parts of getting better, the process, the stages, the moments.