I went lap swimming at Dishman Pool for the first time tonight. Everyone there treated me very nicely for all that I felt very shy tonight.

Best part? I seem to be better able to swim in straight lines now!

I still don’t know what to attribute to the surgery but straight lines!

A few down days

My cat Linus continues to do poorly. We’re giving him more insulin but he still sleeps by his water bowl (one of the top signs of diabetes that Linus displays). Meanwhile his new food is helping his digestive issues even as it makes him stinky and sick. He is still throwing up the first half of every day. I’ll skip kitty litter discussions.

My head cold is finally starting to clear up and I am getting more active post-surgery. I find I lack energy though.

I got Linus in January of 2000. I had been on call for Y2K tech support for New Year’s while working full time and attending community college full time in the evenings.  My life was work, homework, school, and a few friendly moments with coworkers. Life was pretty scripted and getting very surreal. I lived alone. I would come home from work where I worked from a script for the phones, go to school where I worked from the script that is a curriculum, and do homework which wasn’t very challenging. I was fading into a script. I needed something by my side that was unscripted.

If I could have, if I had had time, I would have gotten a puppy or a dog. I love dogs. I always had dogs growing up. I knew the responsibility for a dog was beyond me though. I needed something a little more independent: a cat.

A coworker who was a friend drove me out to the humane society and the local pound. I didn’t have a car. She took me there several times. I was determined to get an adult female calico, short hair. The first trip to the humane society she even charmed us into the back room where a new batch of kittens were being deflea’d. They had been left in a box on the side of the highway. I didn’t want a kitten. On my third visit to the humane society I wandered the cat room and finally had to admit the medium haired tabby boy kitten sitting in the windowsill looking out at the pet cemetery was mine. I picked him up and he threw an arm over my heart. He still does this.

He was so loving and quiet and cuddly. I took him to the vet who treated him for a head cold and after he became an utter terror. We worked out our boundaries. I named him Little Linus Larrabee, my own leading man. He kept me sane through college, moved to New York City with me when I graduated, moved home to Oregon with me when that moment came. Likes it when I play video games because he knows I’ll sit still and he can perch on me.

Watching him get sick like this makes me feel so numb to everything else. He’s off his food, a first. I’m off my food. He mopes around the house. I mope around the house. He moves out of range with very little interest or energy and barely a hiss when our three year old cat wants to play. I find I have little interest in playing with my friends. We’re in this tight little circle of two, Linus and I.

His bloodwork came back normal. His blood sugar levels are only moderately high. My husband and I joke that he’s probably allergic to the high fiber food that the vet prescribed. It’s not good for his blood sugar but it seems to be worse than that and yet it fixes some digestive issues that have been plaguing us for the last two years. We really don’t know what’s wrong with him.

It’s kind of weird having a cat with a mystery illness. I am just recovering from having my mystery illness patched. A lot of people with SCDS spend years trying to figure out what is wrong and then years waiting for their quality of life to get so bad that surgery seems worth it. I jumped right into surgery. Quality of life is very important to me. It’s not what I can stand, it’s what I aspire to. I aspire to so much more than being sick.

So here I am getting better while my cat, my Linus, my leading man of fourteen years, gets sick. Yeah. Don’t feel much like talking to people, posting that much on facebook, doing that much of anything really. I wish it was his mood that was broken and not his health. I would pick him up and dance around the room with him singing while he waited for a moment when he could leap out of my arms and escape and wash himself with dignity. Linus is good at dignity.

Anyway, that’s what’s going on with me. Sick cat.

Quality of Life: Sad Cat

I just finished getting a very expensive surgery to fix my own quality of life. Meanwhile my cat, who I adopted in January 2000, has health issues that are effecting his quality of life. Specifically diabetes and some digestion issues. One requires a low sugar/low fiber diet and the other requires a high fiber diet. Insulin shots (twice a day at meal times) can help with this balancing act but lately he’s gotten worse. He has a vet appointment this afternoon to discuss how to get him feeling better.

My cat sleeps a lot. He doesn’t groom himself. He throws up way too often (from one end or the other) and makes a pitiful meowing noise when he does. He walks stiffly, like he’s in pain, and hisses when someone walks too close to him. Given enough experimentation I can extend his life through medicine. He will have bad days and good days. Lately the bad days have gotten longer and the good days fewer. He still loves me, still purrs when he sits next to me all stinky and crusty.

Part of me feels like an evil scientist experimenting on my cat “for the better good.” I seem to have defined good as his continued life. I don’t know if that is right any more.

With people it is possible to have a sense of how to approach an illness. A little reason can be offered, hope spoken of, pros and cons weighed with great empathy. Linus, my cat, doesn’t know what is happening to him. He recognizes that the shot makes him feel better (or used to) but I can’t explain all the conflicting issues. He feels like he is dying right now. That’s how I interpret his no longer cleaning himself. I don’t know how to tell him that all this suffering I put him through may make life nicer. I don’t know how much suffering counts as fair.

At what point am I torturing my cat to keep him alive?

Learning Names

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!)

Superior Canal Dehiscence Syndrom: Three Months Post-Op

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 “Superior Canal Dehiscence Syndrom: Three Months Post-Op”

Self Trust Post Brain Fog

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.

Yes and We

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.

Sunlight, Bed, Vestibular Symptoms

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.

Eyes Ears Brain Feet

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.