How am I doing?
In a word, overwhelmed. I am doing more than I have in many years. Three appointments a week for ST (speech therapy), PT, and OT. At home assignments and exercises for each. The things I have to do for personal homeostasis (like skyping Jess). Then there’s the stress of the pandemic. It may not sound like much to the average human, but for me it often feels damn near frenetic. The thought of writing anything, whether it be a thank you note or a blog post, sends cortisol coursing through my body. It’s the task my broken brain finds most difficult. But here I am, trying to push past my perfectionism and put my unpolished thoughts out here. I’m not certain of what it’s going to be, but it’ll be… something.
First of all, neuro recovery is long, tedious, and grueling. What I find most challenging, however, is its unpredictability. Yes, I’ve had a fairly unpredictable condition for years now-- but the range and scope of it is larger now. Pre op, feeling okay enough cognitively to really engage in my life was rare. These days I’m at a manageable energy level much more frequently. I never know when these precious hours will occur, though. It could be first thing in the morning, mid-afternoon, 11:00 PM--and I never know how long they will last. I have weeks where I have none and weeks where I have a few of these hours every day. It makes it hard to pace myself. Then there is the uncertainty of a grander scale. Will I make enough cognitive gains to pursue higher education? When?
I am definitely more focused on the mental aspect of my recovery than the physical. At this point, it is a choice I have to make. My quality of life is most dependent upon the ability to use my mind, and physical activity has the tendency to make me feel like I have a skull full of scrambled eggs. My speech therapist, Catharine, is leading the charge on the cognitive front.
Catharine and I during an ST session
She has given me some challenging assignments. A major one is that she has me reading a book, independently, for the first time in 6 years. She told me to read a book that I was familiar with. My first inclination was to choose A Wrinkle in Time, but ultimately decided that its abstract, conceptual nature meant it wasn’t my best option. Instead, I went with the old stand-by, Harry Potter and the Sorcerer’s Stone. It has the added benefit of being adapted into a movie I know well that can provide the images for my brain so I can focus on comprehension and retention instead of trying to picture the action. I've been reading 1-3 pages a day and have just started the second chapter. Little victories, right?
Another of her assignments was building a gingerbread house. The key focuses of this project were assembling the ingredients and equipment, instructing my mom how to make the royal icing, and then following instructions, on my own, to build the house. Having to clearly explain the process and then execute the task drained every drop of my energy reservoir. But it meant I could skip my occupational therapy exercises in good conscience, because the assembly pushed the limits of my fine motor skills.
Building the House of #WAMA
Catharine has also assigned me logic puzzles, paragraphs for reading comprehension, and the Lumosity app, among other things.
In other news, it’s become clear that since surgery I metabolize things differently: medicine, caffeine, food. I’m down to 1/3 of my former trazadone dose, I can no longer drink coffee as late in the day without it affecting my sleep, and I’ve been gaining weight even though my diet is the same. As a former anorexic, this last development has been causing a substantial amount of anxiety. I haven’t resorted to restrictive eating thus far, though, and I’m really quite proud of that. I have hope that these metabolism changes are a good sign in my recovery.
COVID-19
I’ve debated whether or not to include this little section. However, because this subject is living rent-free in my mind and consuming a lot of my energy, my mom told me to publish it.
The pandemic has deeply affected my psyche, but not in the way that most people are talking about. I am used to isolation, to missing out. In many ways, I am actually less isolated than I have been in the past. I used to be primarily trapped in the upper floor of our two Oregon houses, crawling to get around, with no energy to really speak to people at all. Now I have a bedroom on the main floor --which has hardwood floors I can use my wheelchair on. I have more energy to interact with people. I see my therapists (while taking every precaution possible, of course).
The major ways in which coronavirus has influenced my mental health are as follows:
1. I am anxious about the safety of my loved ones, myself, and the world. Not only about the prospect of death, but the possibility of the virus causing a chronic illness the likes of which I am only too familiar with and would not wish on my worst enemy (no, not even that kid from the middle school bus). As for those of us that are already in poor health--I worry about this sickness causing a sharp decline we may not be able to fully recover from.
2. The people around me are struggling due to a number of factors. The pandemic, of course, has disproportionally affected people of color, the disabled community, the elderly, frontline healthcare workers, and those with a low income. But everyone I love is facing something or another at this time. For example, my nurse trainee sister has to address her 4 and 6-year-old daughters' anxieties about "the sickness" and their sadness at being isolated from friends and family.
3. Perhaps most importantly, the way in which people have behaved this year has severely and irreparably damaged my faith in humanity at large and my trust in many people in particular. I still cannot fathom how so many privileged individuals can stand to endanger anyone in order to avoid the temporary distress caused by taking preventative measures. On the other hand--those that have shown that they truly live by the morals they claim have gained my deepest loyalty and love.
All in all, living in Utah at this time is enough to make anyone rightfully troubled by the pandemic feel like they’re losing their mind. For me, getting accurate COVID-19 information from the brilliant and funny scientists working with the virus helps. @kinggutterbaby’s stories are a must watch. @kizzyphd is a genius who made the Moderna vaccine possible. @theicumurse and @doctor.darien are working on the frontlines. Other honorable mentions include: @jessicamalatyrivera, @jesseosheamd, @dr.risahoshino, @science.sam, @dresmerelda, @kennenhutchison, and @virus.vs.labcoat.
Wishing you all health and happyish holidays from the Jarman clan x