7/28/87 – 7/6/17
29 years, 11 months, 3 weeks, 1 day
I only met you once, however, that was enough to realize how you could impact people – you left an impression on me with the first bright, happy smile you greeted me with. Christy, John and Brendan are devastated, along with other mutual friends; but the impressions and joy you’ve left with people – including those of us who only met you once – are and will be forever remembered.
Thinking of you,
1 year ago – Monday, May 16 2016
I waited, excited and nervous.
Tomorrow. A burr hole will expose the surface of my brain for the very first time… tomorrow. Less than 24 hours.
I don’t remember what I did that morning, or the days leading up to it. I know that I watched videos of the pending surgery over and over, read and reread clinical studies done on a similar type of DBS (deep brain stimulation) surgery that I would be undergoing.
Dr. Fenoy, the young neurosurgeon who specializes in DBS at the Mischer Neuroscience Institute, had met with me as little as a month and a half prior and I had made up my mind, that day, that I would have this elective surgery done.
“Elective”, because it wouldn’t have been necessary to keep me alive. But that’s exactly how I was looking at it; it would keep me alive. With no idea as to how effective it would be, it would keep me alive, even if it only reduced my tremors by 25%. I would stay alive for that.
I knew that there would be risks to having the surgery. I could lose memory – fine; I’ve already lost enough from the strokes. Infection could set in after the surgery, and if it were caught early enough the surgery would need to be reversed. Other potential complications – the usual, such as coma or death – were possibilities. But a small possibility. If it were a large possibility, I still would have done it. I didn’t want to live like that anymore.
Dr. Fenoy would target the dentatorubral tract (DRT) in the red nucleus of my thalamus. Used primarily to treat PD (Parkinson’s disease), dystonia and Meige syndrome, ET (essential tremor), OCD (obsessive compulsive disorder) and depression – none of which share the area of target that Dr. Fenoy would aim for during my specific surgery. The FDA-approved areas of target for DBS are the Anterior limb of Internal Capsule, GPi (Globus Pallidus), STN (Subthalamic Nucleus) and VIM (Ventral Intermedius Nucleus).
So, I read everything I could about DBS for essential tremor and PD, the two conditions most similar to mine, and poured over the manufacturer’s website.
Early on I had made the mistake of thinking that my brainstem tremor was caused by my acquired acute cerebellar ataxia, without realizing that I was dealing with two separate disorders that have overlapping symptoms and similarities.
Where was I? Focus.
Oh, right. Day before surgery.
After a few hours of reading and rereading about my forthcoming surgery, I stumbled clumsily back to the apartment to shave my head.
Yep. Just like that.
My hands shook in uncontrollabe, unusually tiny, quick tremors – something that began happening after the multiple simultaneous infartions (multiple strokes), when I get nervous. And that day, I was pretty damn nervous… with excitement.
I took Adam’s electric shaver and stood in front of the washroom mirror.
But I couldn’t seem to stop shaking. I grew nervous about knicking my scalp and worried that the surgery would be postponed because of it.
Yeah. Because that made sense…
My scalp was going to be pulled back from my skull but somehow a tiny knick would negate having the surgery.
Entirely possible but ironic nonetheless.
In the end, Adam shaved my head. First, he gave me a mullet. Then a mohawk, which just looked like a bad mullet because of how long my mohawk hair was. I giggled the entire time but refused photos.
Before shaving my head, Adam took one last picture of my long hair. He’s thoughtful like that.
He didn’t shave it close; that would be done by a member of the surgical team.
Exhausted and excited, I barely slept.
1 year. Tomorrow will mark 1 year, and it’s never been better.
I wake sometime between 5 and 6, as usual.
Get up, tell Alexa to turn on the bedroom lights. Pad into the washroom. I’m extra wobbly in the morning so I have Alexa turn on the kitchen lights while I grasp the counter and carefully step my way to the corner where my morning dose of Sertraline (the generic of Zoloft, for vertigo and depression – hah), Levetiracetan (the generic of Keppra, for seizures) and 81mg of Aspirin (recurring stroke preventative therapy) await.
32oz of water follow as I swallow the three pills.
I set a mug under my Keurig and start my coffee for the morning.
I turn and, a couple of steps leader, struggle to make my hemiparetic hand grasp the refrigerator doorhandle and pull it open.
Soylent. Anything else takes more than a few steps to prepare; I’d have to think through each step before doing it, and that would take a while. Most of my meals consist of Soylent so I’ll have energy to do other things.
I turn and wobble my way to the sofa and carefully sent my Soylent on the coffee table before sitting down.
I take my phone and open my Headspace app. A 30-minute session goes by and then my Soylent is finally warm enough for me to drink. I don’t drink it cold. Sensitive teeth.
I slowly peel back the wrapping on the bottle with my teeth.
Flip to the YouTube channel on the Roku. Or listen to some textbook on Audible. Depends on the day.
I finish my Soylent.
Exercise while watching letters on neurology, neurobiology, physiology, neuroanatomy, color theory, painting methods, reviews, art history; sometimes it’s an audiobook on one of or several of those topics topics.
I do this for a while. Is sometimes it takes me a bit to actually start exercising; a few hours of lectures passing by before I begin.
In the meantime, Adam’s gotten ready and left for work.
“See you later. Have a good day.”
Squats. Curls. Oblique crunches. Bridges. Whatever else before I walk the five floors of my building – something I’m often too mentally exhausted to do.
Then I settle in to finish whatever lecture or book I’ve started.
I should take a shower. It’s almost noon.
I shower. It doesn’t take me long anymore.
Sometimes I decide to put on makeup. Why? I’m not going to see anyone today.
I do it anyway.
It lets me change my appearance. It lets me change something about myself. Yeah, it’s temporary, but, for a day, I can change my eye shape or my bone structure. I can change me. I don’t do it for any other reason. I’m unlikely to see anyone during the day, so it’s definitely for me.
So I put it on and change of myself just a little, and then I’m a tiny bit happier.
It takes me a while to put on makeup. By the time I’m finished it’s around 1. What next?
I start to paint. Turn on an audiobook and paint. Maybe a galaxy today. An explosion of color in a place far out of reach; someplace I can only observe by going to an observatory or by getting online. I paint it because it’s far away from the reality that I have now. It’s away, where I wish I could be. Should be.
I listen to the traffic in the busy streets outside my window. Hours pass. It’s a large painting that should take a few days to complete. That’s good. Something to pass the time. Something to look forward to.
Adam comes back. Something to eat. He’s tired from the day and sits at his computer to let his mind relax. I understand.
I wash my face. Take a pill to keep the seizures at bay. Crawl into bed. Sleep.
Time to do it again.
Days go by. The exact same routine. Except, now I have rounds to look forward to; Thursdays and Fridays. A resident recently gave me her cell number and we occasionally text back and forth about some neuro topic. I look forward to those exchanges.
Once in awhile, mostly on weekends, I had over to Mimzy’s – Adam driving, of course. The last time was this past Sunday. I haven’t left the apartment since. If I have, I don’t remember it.
The seclusion is mainly because of the concussion I recently sustained. Before the concussion I would Uber a few blocks away to have my nails done, pop into the book shop, something like that. The last time I did that I’d had to wait at a bus stop three blocks from the apartment until Adam left work for the day and could pick me up. I’d gotten too tired to walk the rest of the way and I couldn’t cross the streets before a driver would lean on their horn.
Just before the concussion, I’d gotten my Saebo Step and had begun walking around a bit more. It helps keep my toes from dragging because of my foot drop. Steadier walking = more energy to walk. I was thrilled. It lifted me out of the cloud that had returned after I had gotten back from the National Ataxia Foundation conference in San Antonio (I’ll write about that later.).
It was a minor concussion. If you’ve ever had any sort of brain injury, you’re probably familiar with the adage, ‘no brain injury is the same.’ Multiple people can have it the same injury in the same part of the brain and respond completely differently. No one’s brain injury experience is the same.
Thinking back on how helpless I had felt while sitting on the corner waiting for Adam to drive by on his way back, I’d decided that I didn’t want to live this way anymore. Something has to change. Has to.
A couple of weeks later, my head made contact with the living room floor and jostled my brain just enough. Most affects of minor concussion last only a few weeks, and mine haven’t completely faded. It’s only been a week and a half? Two weeks? I don’t remember.
Whatever. The confidence isn’t there anymore, though; not that I have a lot before the concussion. I don’t know how long it will take me to try crossing a street or going to the market again. Thinking about it makes me tired and my head begins to l pound. Hopefully the hesitation will fade along with the effects of the concussion.
Either way, I’ve got to figure out how to get around. Yes, I can walk. But random bouts of fatigue can leave me inside my apartment for days at a time; leaving to check the mail when I finally feel up to it or when Adam persuades me to go somewhere.
Don’t get me wrong, I talk to a few people on a daily or near daily basis. I rely on them far more than they can ever know. Adam, Christy, John, Brendan.
Adam, he’s been there for everything since college. He’s been my biggest supporter, caregiver and confidant since the beginning, before the stroke. Everyone knows that. Christy calls as often as she can. She has a part-time job and has her own fatigue related problems. John makes contact every morning, every night, always checking up on me. He, like myself, doesn’t work. Technically. He’s a freelance artist, my teacher and mentor. Brendan is the only one of us who has a full-time office career. He’s an accountant, with regular work hours. But he still finds time to send me a message or have a quick chat.
I need to find a way to get around. Something that allows me to stop relying on Uber to go a few blocks. $12 for maybe 12 blocks round trip just to go to the market and pick up a few items, in addition to what I buy at the market? I dislike relying on someone else’s income; unable to contribute in any meaningful way other than housekeeping. There’s no way I could make it on my own with the paltry amount that social security sends to me each month. I wish I could contribute more.
I can’t use a wheelchair because of the combination of hemiparesis, ACA (acute cerebellar ataxia) and diminished sensation affecting the right half of my body. I’m unable to feel whether or not my right hand is on the rim of a wheelchair or if my fingers are tangled in the spokes, so it’s dangerous for me to use one.
So this week I began researching wheelchairs again. I’d looked before and held off because of the price tag attached to the adaptation I would need.
In an odd way, my recent concussion has been helpful. I wouldn’t have begun looking at chairs again otherwise.
I don’t need or plan to use a chair full-time. Just for anything outside of my apartment grounds that requires a bit of walking.
So I came across Nu Drive again. It’s an adaptation for a standard, manual wheelchair; two stick-like attachments are connected to the wheelchair wheels. The user then propels and steers their chair by pushing the stick attachments back and forth instead of pushing the rims of the chair, which requires more fine motor skills and dexterity.
I need this. I don’t want to keep on as I currently am.
Yesterday I was listening to a book of patient stories. A particular story that stuck out to me was the story of a man who was deaf and had had an aneurysm that left him dependent on ICU care. He one day he realize that months have passed since his arrival and Christmas was on its way. He had lost track of time because of his isolation and never changing surroundings. Soon after his realization, he lost his vision. Deaf, blind, and relying on life support, he desperately tried to pull his life support anytime his wrists were unbound from his hospital bed. He had been so secluded in his hospital room, watching a television that he couldn’t hear and gradually couldn’t see as his vision began to fail him. He and his parents spoke to the hospital board and together petitioned for a ruling to allow him to remove his own life support.
The last time I saw Adam#2, he had had a son who was several months old by then. He had driven an hour to pick me up and take me to lunch. Afterward, he’d dropped me off and I’d cried.
One of the maximum forms of punishment is utter seclusion.
The very worst part about being around people is knowing that at some point they’ll need to drop me off again and I won’t see them again for a while.
Until then, it’s just me painting in studying, and Adam working his ass off. Adam’s more social than I am now.
It’s time for me to stop being secluded. Time for me, and the few people around me, to acknowledge that it’s time for a chair.
Again, I have no intention of using the wheelchair full time. I can walk and don’t want to lose that ability to relying on a wheelchair.
I have no intention of stopping my weekend walks or handcycling at Memorial Park with the Achilles crew.
So I’m putting all of my time and effort into painting like mad right now. I need to focus on selling my paintings, finding a chair and Nu Drive.
And that’s what I’m doing.
This past week I told Dean that I couldn’t go for a quick coffee because I needed to paint. Completely true, especially because they’re currently is no such thing as a quick coffee for me; it would take at least two hours.
A few weeks ago, Bernie texted me to ask if I would sell some paintings at the West End Running Club‘s annual Brew Run this weekend. It doesn’t matter if I sell only one painting; I’ll load up my paintings and have them ready to sell anyway. Just in case.
Unfortunately the timing of the concussion means that there’s absolutely no way I’m competing at Nationals next week. I also need to wait on purchasing my own handcycle so I can purchase the Nu Drive instead, and purchase the handcycle in the future.
For the first time in a couple of weeks, I feel good.
I have something to look forward to. It’s not what I had planned to look forward to (Nationals), but it’s something. Something more than my everyday routine. Something that could pave a path (that I can actually traverse) back into society. No more living doctor’s visit to doctors visit, weekend to weekend with Achilles or visits to Mimzy’s house (even though I love those visits, I need to fill my weekdays as well), rehab session, rounds, searching the web for videos and news about things I missing out on.
I’ll be careful to not let myself think that people who kept in regular contact with before the stroke are suddenly true again simply because I can relieve them of the task of having to come to me. Still, social contact is social contact. I currently don’t even cross under the highway; something necessary in order to access the venues and activities on that side of the road.
The best part? I won’t need to be secluded because of my inability to maintain my balance. ‘Despite disability’.
Things are looking up.
After my last post, my friend, Elizabeth, wrote this to me:
‘Ellie if you are feeling broken, please remember the Japanese process of Kintsugi. Pottery that is broken is repaired with gold. It highlights that the mended repair is beautiful. It emphasizes beauty in the imperfect. Perfection is overrated. Your brain is wonderful just the way it is…’
I have come to find that one of the biggest feelings you can feel is that of a hollow, empty, reckless emotion that evades any possible reason or cause. It whips you around at times, completely unexpectedly, striking you from the edges like a car nicking your side and sending you reeling into some utter tragedy.
Post-stroke depression is a bitch. Smile anyway.