When SCDS weighed me down I worked hard to make it through my work days and create quality code. (Hi, my name is Rebekah and I am a computer programmer.) The social side of work fell through the cracks. I still talked to my coworkers and maintained good relationships but I didn’t really pay attention to them. That sounds kind of awful but when your head is full of pain it creates a fog that is the struggle of the day and there is little room left over for little things like learning the names of the people you talk to in the break room.
Now that surgery is over and I am feeling more aware I realized I talk to a lot of people who know (and seem to like me) and I have no idea what their names are. I’ve been told that I can just say “still recovering from surgery, what’s your name?” but I am SO SICK of being sick and having it be a reason for me to be less. Anyway, I can hack this. So I’ll guess at a name and look up their email to see if they have a user icon that includes their face. Or ask a friend who is in on this new task. It’s actually going really well. I’m enjoying learning all these names and like all these people.
The real point is that I am SICK of being sick. I just want people to see me as healthy. I feel healthier. I don’t want crutches (or walking sticks). I want to appear normal and I’m willing to put extra effort in to do so.
(Any random coworkers that may read my blog can help by having their own face as a user icon or when we’re talking and a third person joins the conversation saying “oh hey, Bryan!” as a hint. Or feel free to tease me and ask if I know your name. It can be a game! If I get it wrong I learn a new name!)
Three months ago to the day I had a middle fossa craniotomy. I feel 80-90% better which is realistically 99% better with pickiness. Time and doing my exercises will improve me above and beyond to 100 or a 110%. My skin feels entirely new and I am sifting through what was me because I had a hole in my head compared with what is actually me. Crowds no longer bother me. I think I need to start attending music festivals. Or maybe one of those mass of people all dress up as the bunny rabbit or zombies. I have a lot of digesting to do and a lot of it is happening quietly or in conversations with friends not online. Those of you who check my blog do get this super secret reward though for the three month anniversary of my surgery: the steampunk fairy tale version of what happened that day!
An Entirely Elaborate and Fictional Account of My Surgery
The Middle Fossa Craniotomy as Done By Dr P Ashley Wackym
Told Mostly in Lies by Rebekah Golden
Many strange adventures led to the day Dr P Ashley Wackym cut open my head. Soothsayers were consulted, insurance approval required, and most importantly both he and I required preparations. For him preparations involved twenty five years of surgeries involving the cochlea, eighty of which involved the rare condition vexing me known as Superior Canal Dehiscence. For me preparations involved two dreadful months of waiting as well as a lifetime of leaping into situations so the decision, as a wise man said, felt like a “a no brainer.” Continue reading
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