One April morning in 2016, I woke up and had a massive violent seizure. Imagine that happening to you. I lay on the floor beside my bed confused by what had happened and exhausted from all the jerking and shaking. I went to the phone and called someone and discovered that I couldn’t speak.
For a year, almost every blog post was about the horror my life had become. My most vivid and powerful memory is not about a seizure, it was going out for a walk outdoors for the first time, about three weeks after my first seizure. It was a beautiful warm summer day, and I remember walking down a lane, because lanes were empty of people, and I had earplugs in my ears, two pairs of sunglasses on, I was wearing a very bulky coat and I had on my roller-skating pads to protect me if I had a seizure.
For the ensuing two years, almost every blog post was about my symptoms or insights provided to me from Dr. Shoja. But my new life was emerging. I’d moved to Gabriola, and I had lots to write about besides my mental health. My posts about my symptoms, particularly my speech, slowed and then stopped.
Two years ago, my symptoms got worse, and I returned to the care of Dr. Shoja (I’d taken a couple of years off from seeing her.) Soon after going back into her care, she used the word “neglect” do describe my childhood and the cause of my condition. That triggered a return to a long, long series of posts about my mental health as I came to terms with her revelations about the impact of trauma on body and soul.
My breakdown was the biggest challenge of my life. I never thought I’d endure anything worse than the kidney stones and migraines of my early years. It took years of living with my condition and years of therapy to accept and adapt to life with C-PTSD and FND. Now I am well into this new and very different life, a life that is profoundly different from how I was living before my breakdown.
Since the onset of my condition, I have wanted to have a radio to listen to, and I listen exclusively to classical music. I neither listened to radio nor classical music before becoming ill. I live on an island now, I have pets, a huge garden, a car … a generator! I chop wood every day.
But the biggest change is in my mind where I form ideas and compose words to speak and write. When I first became ill, I was sent to the Pacific Speech Clinic at Vancouver General Hospital. That is how I met Dr. Shoja. I supplemented my sessions with her with research and participation in speech and FND support groups, and dozens of times I have heard my condition being described like this: “Think of it this way: Your brain is a computer—the hardware—and FND is a software problem.”
It meant nothing to me at all when I first heard it. I wanted information, and lots of it, not trite sound bite phrases. It was too abstract; I needed hardcore facts to understand how being neglected as a child can cause me to have a mental breakdown late in life and come out of it as a totally altered person. Now, that phrase has great meaning to me. I love the metaphor. And if the brain is hardware, so is the rest of the body.
I’m having trouble reading and walking. When I try to read, after as few as several paragraphs, the book is on my chest, and I am dozing. I wake up, and I want to move around, and I do just that. And then I’ll try to read again, and I just cannot stick it. I seem to be unable to settle, but I can when I watch TV. Even then, though, I’m up and down. The walking issue is due to my heart (maybe).
I discovered my inability to concentrate when I moved here. I built myself a studio—with a fireplace.I’d always built things in my home, so having a dedicated creative space was a dream come true. But I have not used it. For one thing, it’s expensive to heat two buildings, but my desire to create died.
Now reading is suffering. As I say, I am pissed. I shall keep trying. I’ve been napping much more, I notice, too. Winters are hard. They press down on me. The fireplace is the antidote.
I think I may have more energy and feel more myself if the problem making me so weak can be fixed. Three weeks today, I get my first test, an echocardiogram. Nine days later, I get two MIBI scans (nuclear medicine). Then I wait to hear the results. There is something wrong, but will they find out what it is?
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