The surprising secret rewards to writing with aphasia
Let me set the stage for you.
I was about eleven weeks post stroke. I was at home. And I was gaining confidence little by little.
Until that morning when my doctor, in an off-the-cuff-kind-of-a-way, mentioned the fact that I would need to have another surgery in a year’s time, if my artery didn’t heal.
That was an extreme catalyst for me. It started the ball rolling, as they say.
I just could not wrap my head around his words. I suffered a stroke after an internal carotid artery dissection. A stent was placed in my artery as far as it would go, but that wasn’t far enough to repair my dissection.
You see, my carotid artery is an anomaly. It’s curly and twisty, while most people have a straight one. I was lucky that my doctors could place the stent at all, without causing it to coil back on itself. I was unlucky that they couldn’t get it all the way to the top of my dissection.
So, that surgery he was mentioning seemed like a death sentence. It seemed impossible.
I remember that time as a bleak period, one of the darkest moments of my life.
I needed something to pull me back up from the drain that I was quickly spiraling towards. It was a moment where I needed meaning.
I wouldn’t know until I came out the other side of that nightmare that some beautiful things were about to happen.
For starters, somebody close told me to make videos for our children. I was panic-stricken to leave them motherless. I followed his advice and did just that. Now I’m loaded with arsenal for their 18th birthdays. Or their weddings. Or just because.
I can understand what it means to hit rock bottom. But in the words of my grandmother, when you’re that far down, the only way to go is up.
When I was hanging around the drain, deciding if I was going to sink or swim, I remembered those words. I decided I am a fighter. And how better to #kickthisstrokesass than by writing about it? Writing all my fears, all of my triumphs, all of my everything, in order for you to walk down this weirdly terrifying path with me.
I found meaning in my writing.
Here’s the thing…. my writing did not, and still doesn’t, come easily.
I’m suffering from nonfluent aphasia and agraphia. This means that words don't fall off my tongue or fingertips as easily as they used to. I have to work like hell to make sure each sentence is crafted with care.
The difficulty that I’m faced with every time I open my mouth, even if it’s just to tell my address to a cab driver, is that those rascally words are all stuck in my dictionary and for love or money, they won’t come out. It’s frustrating, this nonfluent aphasia, to say the least. I have to think and rethink every single sentence.
And then, sometimes, a green dog pops out! That’s one of my favourite symptoms of my stroke, verbal paraphasias. It happens when I am feeling that confident sense of I’ve got this, and suddenly my brain returns with a ridiculous word or concept.
My brain was damaged as a result of my stroke and there are also cognitive issues, making life not-so-easy, as a fall-out. Things such as memory, the ability to hold my attention to the task at hand for long periods of time (or at least for the completion of a sentence) and the ability to process the big picture, turning it into little, bite size chunks.
It’s tricky business over here to handle all of these issues.
Once I have a handle on all of them, my words are sitting in a row, just waiting for me to take them from my mind and put them onto paper, to actually write them down….then my agraphia kicks in. How do I write?
My fingers used to know the way around my keyboard with ease. I could text my socks off and I had pretty darn good handwriting as well. The thing with agraphia is everything turns into goobly gook when I try to write it down. Something that I took for granted before, now requires my full attention.
My fingers don’t know where to go unless I make a conscious effort.
Remember all of the lists and more lists I was making?
Well, they contributed to my therapy as well as being completely therapeutic. The hours and hours spent writing one word, followed by another, followed by another, seemed endless until that very first blog post came out.
Slowly but surely, on 26 May, 14 weeks after my stroke, I hit send.
Sent to all of you, with a tense feeling of emotions all tangled up inside me. Would you judge me? Even worse, feel sorry for me? I did not know what I was doing. I only knew that it felt right.
That twelve-hundred words post took me upwards of 20 hours to write.
That’s 60 words per hour.
Or, a single word per minute.
Since the end of May, I have written well over 10’000 published words. So yeah, I feel it.
I feel the accomplishments of a writer re-learning her craft. I feel the meaning of my words. I feel the stress of not getting those words out to you quickly enough….of having something important to say….
I want to shout sometimes.
Hell, sometimes I do shout! “Will. Anything. Ever. Be. The. Same???”
And then, I break down and cry.
And then, I begin doing the only thing that I can do.
I start working.
I’m damn lucky. I have the access to work thru my deficits. I have the resources. And I have the will to do just that.
Enter Seth, my speech therapist, my go-to for all gripes, bitches and celebrations thru these sidewinding 30 weeks.
You see, Seth has been thru it all with me. He’s worked by my side for 2 hours each and every day.
He’s like a positive guiding light, carrying me thru the ugly, back-breaking bits, the ones that do my head in. And he doesn’t flinch. If anything, it spurs him on, to spur me on.
Even when I’m tired. Tired of this shitty stroke. Tired of all the shitty work that goes with it.
Because Seth knows what I’m going thru.
Never failing, always flexible, perpetually (annoyingly) positive, I’m proud to also call him my friend. A friend who, at the end of the day, can guide me in the work.
I said that I found meaning in my writing. But, the answer to the screamy question ‘Will. Anything. Ever. Be. The. Same’ is a resounding NO!
Things will never be the same.
I was walking along, quite happily, when all of a sudden this stumbling block of sorts came crashing down. As the rubble was cleared away, I was left with all the options.
I could give up, but that is decidedly un-me-like. I could do a half-assed job of it, making myself into a version of Stacie. Also, not my style.
What I’m gearing up for is something a little bit different.
You see, I’m going to go all in. I realised that I can make a difference to you.
Taking my stroke, my resources, my will and my writing, I hope to create a path for anyone who struggles, like I do.
