two years
are we there yet?
A few nights ago, I had two very vivid dreams. When I woke, I could not sort dream snippets from notions of recent interactions. I was very tired and though I tend to remember details, I am sometimes foggy about their context. In one dream, someone was playing a CountingCrows song ethereally. In my dream I knew this had happened recently; I was visiting a friend and Counting Crows played on a loop over hidden speakers as we talked. We were in her studio but when we would step into the kitchen for more tea, the music would become clear again. In my dream, I remembered this and was surprised to hear it again. Or, it is possible that someone played the Counting Crows at work. I work on the other side of a bar wall--music and conversation drifts over and it is difficult to discern its source.
In the other dream, I was struggling to remember a word, describing its meaning but unable to communicate with whomever I was speaking with. It was not a memory but it could have been.
Today marks two years since I bumped my head at work and never really went back.
I mean, I never really went back to work; not to that position and after many awful attempts at accommodation, I left the company. I also never really went back to who I was in the moments before I hit my head. The next six months were dark and angry, full of miscommunication and impossible expectations that I failed to meet. I was frustrated by my own limitations, following all my doctor's instructions, waking at 3 am like my job asked to attempt to work, and often worsening my condition. Most people who relied on me in any way were frustrated by the invisibility of my injuries and my inability to be healed. My job wanted me to be better, my doctor implied I wasn't trying hard enough and anyone close to me only heard anger and frustration. It was hard to see past that, to sift through all the junk that came out of my mouth and see I was really hurting and didn't know what to do. I had trouble seeing that for myself. I could not push away my frustration to find any patience. That was a symptom of course, reactivity and trouble regulating my emotions. But it was difficult to see that. On the surface I was anger or sadness or sometimes a placating smile but there was turbulence below born of fear, frustration and a brain injury.
I also never really went back to who I was in the moments before I hit my head.
With the encouragement of a support group, I eventually found help. I found a doctor who told me I needed more rest time to recover, referred me to helpful treatments and gave my workplace stricter accommodation needs that led to me being able to stay home. I was able to take time to heal and rest and recover and my symptoms improved greatly.
A year ago I was beginning to work again, and to teach and to take on part time jobs.. I was trying out the waters of life and adjusting my expectations while accepting my new limitations. Things were improving but I was not going to be who I was.
I am never going to arrive back at the place I was more than 2 years ago. My symptoms are mostly resolved but I still struggle to drive at night, especially if I am tired. I still forget words sometimes and although I am better at discerning sarcasm., small talk is still very difficult, exhausting and often clumsy.
The past few weeks, daily headaches have returned. They are milder, but a reminder that I can't do everything I used to. It is mostly exacerbated by computer work and stress. I have routines and exercises to help. One trait I have maintained post-concussion is Doing Too Much. I am still not an accurate judge of how much I can do. I don't like to turn down teaching opportunities. I don't like to turn down paid work. And so, some days I work with a headache until I can't. I skim emails and answer what I can. My "yes" is sometimes a "but not now" and I put off commitments for months.
Someone asked me how it's going and when I told them I've been working a lot they said that I must be better.
Someone asked me how it's going and when I told them I've been working a lot they said that I must be better. I am better. I am not best. I am not healed. I will never be "there" yet. I am working a lot means I am working beyond my capacity. I am not taking enough time to rest. At my part time job, my coworkers are confused when I cannot cover extra shifts. Some of them agree to work doubles, or without a day off. I only work two days a week. They assume I have lots of spare time. They know I also teach but don't know how it could take 30 hours of my week if I was able. They assume I teach occasionally and am refusing to work because I don't want to--which is also a valid reason not to pick up extra shifts!
To manage multiple jobs and family life, I have many digital calendars (and one paper planner!) I also have a digital calendar that shows what my ideal week would be--studio time, exercise, job, time off with my family, alone time. . It includes daily routines for recovery and breaks. Every week I open the ideal calendar and lay my plans on top of it trying to maintain the writing time, the walk in the park, the exercise. Trying to squeeze in more without squeezing too much.
Slowly I am edging in more work, more rest and even time space for nothingness.
I don't know how different I am from my pre-concussion self. Most people who know me well haven't seen me before and after (as I still won't fly). My partner might see me too closely to be sure--and I haven't asked. So I can only guess from how I perceive things. I tire more easily. I sleep more. I cannot push past exhaustion. I hold firmer boundaries at work. I repeat what people say to be sure of what they mean.
I know that there is no straightforward path to healing, that there are bumps. I thought I would be writing to tell you it's over. I thought it was over. More accurately it is a part of who I am, little bits of me still healing, all of me always always needing to slow down.
It can be like a gameshow when I am talking, a $10,000 Pyramid of What Do I Mean.
In my dream where I struggled for words I knew it wasn’t real because it doesn’t happen to me like that anymore; I no longer have a blank and panic. I don’t panic anymore and the instances are less frequent. When I can’t remember, I write down everything I can to describe the word that is missing. It can be like a gameshow when I am talking, a $10,000 Pyramid of What Do I Mean. Most people shrug it off. Everyone forgets words. But there were months when I forgot words, names, and sometimes what to do next. My thoughts disappeared below the surface and I was left with a watery blank. I don’t feel that anymore. I can get closer to what I mean most of the time. Not there, but traveling in the right direction.
where was I a year ago? read it here.
want a zine about it? try this
"everything is an experiment" is a reader supported publication from the studio of hope amico. twice monthly news, plus bonus essays like this. if you want to support me and my work, consider becoming a paid member.
Thank you for sharing your journey. It reminds me that I don't always know what others are going through and, whenever possible, be patient - with myself and others.
yes! it’s so hard to remember this!