I’ve been in a really reflective mood as of late. Looking back to last year at this time, I thought I had so much figured out and that 2018 was going to be such a busy and productive year. I could not have been more wrong. Last year at this time, I was slowly reaching a breaking point that been gaining steady ground over the past few years. I was a wreck and I kept dismissing it as being over tired. Looking back it almost seems comical, except that it was awful and I had no idea what was going to happen.
Last year at this time, I had signed a bunch of exciting contracts for teaching. I had also made plans for some interesting art I wanted to complete. I had mapped out in great detail the upcoming six months worth of work. This is fairly typical behaviour for me and it seemed so straightforward as I was headed into January. Except, this time, I had a slow creeping terror that I was going to fail. I couldn’t name it; I couldn’t explain it and I couldn’t see anything amiss. All my plans were the types of plans I had made and executed in the years before, only bigger and brighter. It was time, or so I thought.
Typically, when I make plans, I start with all the known items coming up and enter them into a fresh day timer. The School District time table is usually the first to be entered. I follow that with kid’s trips and camp, out of town guests and miscellaneous doctor’s appointments. Once I have those commitments filled in, I then look to fill the spaces in between with a balance of workshops, events and shows. I book with venues and start adding deadlines for applications and deliveries. It is very methodical and deliberate and touches a very geeky part of my soul. After those items are entered I can do everything from plan blog posts, the focus for studio days and whether or not I need to have something in the slow cooker. My day timer is what allows me to function when my chronic illness flares up or life becomes chaos. It gives me stability.
Last year at this time, I had a day timer waiting for me and everything was so hard. My most favorite day of entering all the known dates came and I struggled. I look at what I had planned in a bunch of saved emails and had to transcribe them onto fresh pages. As I attempted to reign in the chaos of multiple dates and places, I could feel panic rising in my throat. I had to physically circle all the weekends so I would not lose track of them. I entered in all sorts of events but had to make notations so I wouldn’t get confused. Every time I added a new class, anguish came clawing at me. I thought I was overtired.
It never occurred to me that I was steadily checking out of all manner of things I loved. Weekly commitments would come and I would secretly hope they would get cancelled. Activities like running were reduced to resented obligations. Christmas shopping overwhelmed me to the point of tears more than once because I had such a hard time keeping track of what we needed to pick up and what we already had bought. I had an app on my phone for this purpose that I’d used for years and for some reason, manually typing in the items, figuring out a trip to multiple stores and budgeting my time was nearly impossible. As Christmas approached, this distress I kept feeling of everything spinning out of control was steadily gaining ground.
Funny thing is, looking back; I actually have very fuzzy memories of Christmas and all the fun family rituals we celebrated last year. Those memories are there, they are just behind a thick sheet of Plexiglas – I’m pretty sure they will crystallize as I celebrate this year. What I do remember with great clarity is the overwhelming feeling of panic and un-named dread for the upcoming year.
I also remember December 27th, which is typically an unremarkable day in the Christmas Holiday calendar. Although I’d wager that is usually the day that most parents finally get a chance to relax after the unrelenting upswing in the days before Christmas and then Boxing Day sales (remember, I have teenagers, that is the only reason that Boxing Day is notable) On December 27th the panic was still there. I woke up in a foul mood too. My husband helpfully suggested we go for a run, thinking this would provide a stress release for me.
We went to our local track and I went for an angry five kilometre run. Everything during that run made me frustrated; the seniors walking the track, the illegible signs that no one seemed to notice or want to correct, and how difficult it was to figure out what direction I was supposed to run in, even though there were several people already running in one direction. I had no idea that a lot of this was not normal. It didn’t occur to me that it wasn’t normal when I couldn’t figure out how to open my lock. Finally I got super frustrated, I went to look for my husband - it was shortly after I found him that my seizure struck.
In one moment, I went from being someone who was over busy and over tired to someone who had a seizure. In a few hours, I went from that to someone who had a brain tumour larger than a golf ball sitting on her left parietal/occipital lobe region. A couple weeks after that, I became someone recovering from brain surgery. At the time it seemed like I was symptom free, but looking back, it was there. It was the source of my un-named panic.
Turns out your parietal and occipital lobes are super important for processing the world around you. They are responsible for a lot the visual, spatial and language information we use to navigate the world around us. As my slow growing tumour took up more space, it subtly affected those processes and made doing the things I love best very hard. One of the reasons why we didn’t see my issues sooner is because some symptoms echo those of my chronic (well controlled) illness and the fact I was in the habit of meticulously using a day timer. These masked my growing inefficiencies and reading comprehension problems. (side note, I was dyslexic for the three weeks between seizure and surgery, that was weird but not a symptom leading up to discovering my tumour)
When I say “comprehension” it was I literally got so bad with keeping track of written words, I would forget what the paragraph was about before I finished it. I could read it, I could understand it, I could remember reading it, I couldn’t tell you what the content was. It was like sand slipping away in an hourglass. Dates were hard to fix on a calendar because I couldn’t hold onto a date from an email long enough to transcribe into a day timer. I literally got to the point of having my iPad open beside my computer, beside my day timer to see all the moving pieces together. This wasn’t a memory issue so much as a reading issue. I didn’t have nearly the same trouble when somebody verbally told me a date to remember.
Words were a problem sometimes. Especially art/tool related words. Learning letterpress terminology was strange because I would learn a word, know it, know the object and use of the word... for some reason I could not verbalize the word unless I pictured reading it and read it out loud from my mind. Friends would show me tools or equipment and tell me all about each item and I would balk at saying “could you please hand me the _______” time and time again, I could not make the word cross the threshold of my lips. I was very embarrassed about this and thought I was forgetful. I tended to talk around the word and pick up or point to the object instead, waiting for someone else to say the item. Apparently I’m pretty good at that, as I don’t think anyone caught on. Except the time at Heritage Park where I had a room full of teenagers in front of me and suddenly I could not name one item I was explaining. I had explained it probably twenty times already that day until I was left completely blank. That time my head felt very wrong and I left to go sit down and recover. I brushed it off as the flu because I was sick a few days later.
Why is this important? I did my day timer planning for the first part of 2019 this week. I was so scared of how hard it would be so I put it off a few weeks later than normal. Shockingly, it was so straightforward and easy. Come to think of it, every time I start a new book, I brace myself for the upcoming slog of pain that results in me abandoning or forgetting the contents only to find reading is a pleasure. Words still seem to trip me up a little, but I don’t think many people notice (I notice when I’m teaching or explaining art processes) I can’t separate baren and brayer in my mouth, even though my mind clearly knows the difference. I keep referring to the exit in a parking lot as a door (i.e. “we need to leave by the north door” I mean to say exit but my mouth doesn’t articulate that. It’s a blind spot I can live with. I can name the tools now too.
I also have a garden in my mind. It is lush and green and a source of great excitement. For the first time in several years I am pushing to experiment with my art, to make things at home, to grow my passions. I can’t seem to shut my mind off on these things either. I dream something up and can’t stop reading and processing and planning. Right now I am optimistic and full of hope for the future. My husband keeps remarking that it is like I have woken up from a long sleep. In a way, I have.
In closing, you will notice that unlike other “year in review” posts I’ve made, I’m talking very little about art. Honestly, while art sustained me and teaching brought me back to normalcy, 2018 was not about art. Here are some things it taught me:
Now, instead of rebuilding and regaining things that were broken, I need to learn new things. I can’t let illness define me. This is such a small part of who I am, I feel like it is time let the other parts of who I am take charge. In the next few days, I’m planning on posting some of the exciting things I want to do to grow my skills in the coming year. Hopefully 2019 will let me!
PS - For those of you who might be reading about this for the first time, I spent the first half of 2018 blogging about recovery and making art post brain surgery. Some posts are totally written by someone with a brain tumour or someone who recently had brain surgery. I've never bothered to edit them. They are a little art piece in their own right. I put my blog posts in chronological order on this page.