Somewhere Between

Brain dead and discovering the meaning of life.

So far the meaning of life appears to be leaning in the direction of sustaining life, creating more life, enjoying life, and improving life. Sustaining and improving life oddly enough involves population control, aka death.

Meanwhile it’s a nice sunny spring day and I am waiting for my husband to wake up and go for a walk with me. I love our rambles.

Just Do _

I know that “just do it” is a popular phrase in spite of (or because of) the vagary of “it.”

Maybe I am being effected by the various challenges of my life but I’m also annoyed by “just” these days.  Take this doc for installing Composer on your computer. I am annoyed by “just download the executable.” Give me the verbose version from the same site please. I prefer more words and less reassurance of “ease.”

Modifying Yoga [modified]

Twenty years ago I started practicing yoga by choosing a routine from the back of Youth, Yoga and Reincarnation (a book I never finished reading but oh the appendix is worth the $1.50 used price). Over time I’ve modified that basic yoga routine to suit me. I took other yoga classes, studied dance in various forms, learned about muscles and stretching and what my body in particular needed. I now have a modest little yoga drill that works for me. When I do the exercises I go at a pace that works for me. (A very  very yin pace.) I try to associate breathing in and out with the up and down of the motion and generally at my weakest will repeat three times or hold for three breaths.

I haven’t done yoga in over two years. Health issues blah blah blah. On Tuesday I asked my vestibular rehabilitation therapist (aka balance therapist) how long she expected I would need to do my balance exercises. She said that ideally I would do them for the rest of my life, once a day. This was momentarily crushing. It felt like she was saying I would never be healthy or “normal” again. Not that I ever was normal, not that any of us really have met normal, not that the normal in my head is the normal that exists on average. Normal bah!

After a day of digesting this news I decided to start doing yoga again. For me it is a gentle daily exercise that I already had a habit around before I started experiencing all the things that led to brain surgery.  I realized I could modify it to include my balance exercises. That way these exercises are just part of what I do, not something I do because I had a hole in my head (SCDS).

My balance exercises are divided into three parts for me: sitting, standing, standing ankle thing.

Sitting: Sitting with good posture, thumbs become the focal point. Hold thumbs about 10″ from face, each one in front of a shoulder. Look thumb to thumb holding on each thumb for three seconds, moving slowly with eyes between thumbs. Move thumbs to about forehead and heart height and look thumb to thumb again. Shift out to shoulder height again, one up, one down and look thumb to thumb. Shift which is high and which is low, look thumb to thumb. Change to holding one thumb in front of face, this time moving head/vision left right, up down, diagonally both ways. Then change to holding head still and moving thumb while following thumb with eyes (left right, up down, diagonally both ways).  Feel very bored but also headachy and tired.

Standing: Standing with good posture, first time through with feet shoulder width apart, second time through with feet together, third time through with feet shoulder width apart and eyes closed (third time is an advanced exercise lately added.) Move head up and down, side to side, top corner to bottom corner (both sides), focusing on what is visible when eyes are open.

Standing Ankle Thing: Standing with feet shoulder width apart lean forward and back only bending at the ankles. Remain very very aware of feet and ankles.

[modification] I plan to do Standing Ankle Thing  before Chest Expander, Standing after The Stork right before Neck Rolls, Sitting will go where Eye Exercises currently is in addition to those mild yoga eye exercises. [end modification]

I’m also generally modifying my yoga again. Definitely no inversions.

These are the pages I created ten years ago with the complete list of modified yoga from which to pick and choose. I’ll need to make a new entry with modified yoga and balance exercises as described above.

Page one yoga
Page two yoga


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”