Diary of a Madman

This blog has been many things: A travel log, art blog, walking blog, external life story. Its only consistency was that it all was my doing. It has increasingly become what I call a, Diary of a Madman. I always wrote, in private, to understand things. It used the lessons I learned on essay planning to provide structure guidance through a quandary. That’s what I do here now.

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Dr. Shoja sent me the link about Functional Neurological Disorder, I read everything. I really liked the term to describe my condition because the words ‘mental’ and ‘illness’ weren’t in it. She gave me a name to explain my condition that felt less embarrassing and limiting. It’s a nice clean name. FND. It is dominating my life again, as it did when it first came on.

When I’m ‘out there’ doing things like shopping or walking with my friends three mornings a week, I live with my symptoms. Telephone rings: Symptoms. Otherwise, I’m alone and not experiencing any symptoms. It’s fair to say that most weeks I’m alone every moment I’m awake except for four hours, and when I’m alone I think about what’s wrong with me.

Walking outside, I smell, hear and see new safe things that get me out of myself, and television and, most importantly, my beloved pets, and reading—these activities get me over myself/my condition. 

Until three weeks ago, my thinking was positive after I got over the initial onset of my condition. I embarked on what I called ‘the slowest recovery known to man.’ My seizures slowly became less frequent and less violent. My speech never really improved, but it evolved, and I could be fluent using a fake accent. I learned to get by. I had hope.

The crisis number two arrived three weeks ago like a tsunami. I’m back to where I was five years ago when this all started, wondering if I’ll get better or this new level of awful will be permanent and how to function. Tomorrow, I begin a trial by fire.  

Hello, Everest. Tomorrow I go to a new dentist. Friday and Saturday are days alone. Sunday, I go to Nanaimo for my vaccination. Monday, alone. Tuesday, it’s Dr. Shoja. Wednesday, Dr. Somebody@clinic about my blood work results (non-urgent). I’m going to all these appointments armed with my app and a note pad and paper, prepared on many levels for human interaction.

I feel as far away from human beings as a deaf person. People hear my speech, see my mini seizures, but no one sees inside me where I feel like the captain of a sinking submarine, doing my best to keep afloat. It’s tense. The boat is either going up, or, as happened to me three weeks ago, pointing down. I draw conclusions and adapt.

I’ll get used to this second stage and my adaptation will evolve. As with stage one, I’ll get used to things. But the newness of stage two is very much with me. And come tomorrow, I begin a series of first times as Stage Two Me.

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I’d call what’s falling outside Angel Sweat. It ain’t rain. It’s better than nothing, but we desperately need rain. I shall hope for bigger drops all day. Friday, they say, may bring another chance of rain, otherwise there’s naught but sunshine ahead.

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Below are snaps from my walk at Drumbeg on Monday afternoon.

This is my favourite place at Drumbeg. It's off the beaten track
somewhat and overlooks a straight that churns with the tide.

The Arbutus trees are covered in blossoms about to explode. 
(They are hard to see in this photo, I know.)

Bark on a Gary Oak.

That bark on the right! Close up below.

This, too, is chunky Oak bark!

Speech App Hurrah!

 

I’m questioning Dr. Shoja’s diagnosis of a “flare up.” What flared up was my fear and sorrow, but I reckon that my speech is permanently worse. This flare up is now three weeks old. I’m comfortable again with my disability because I’ve learned to focus on the positive—the acceptance of my friends, my ability to still communicate, all be it, s-l-o-w-l-y, and the life I love so much here at Pinecone Park with my pets and the ready access to nature.

Monday began with a walk with Regina, Judith and Di and our dogs in gorgeous sunshine, and when I got home, I had a sudden insight. I once bought speech assist software that was really expensive, but I lost it when my iPhone died and was trashed along with all its apps. On my way home from the walk yesterday, it occurred to me that I might have put it on my iPad that I never use.

So, I charged my Pad and voila, there it was. I spent the rest of the morning refreshing myself on how to use it and loading it up with text to use when I go to get my vaccination. All I have to do, is open the app, select the text I want, and tap on the “speak” button and the app speaks what I have typed into the app. It’s awesome. I can even use it with the phone.

Mid-afternoon, Her Highness and I went to Drumbeg for the first time since last Summer. What a total joy it was to be there, smelling the sweet forest aromas and the seaweed, and feeling the sunlight on my skin. Oh my God, I felt good. There were lots of people there and everyone was positively radiating joy. Two women were even swimming in the ocean.

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Today is another gorgeous day, but it’s predicted to rain tomorrow. God, I hope the forecast is right because we really need some rain—real rain, not just pissy showers.

Today I plan to be back outside working on the yard, reading more of my book (The Girl with the Louding Voice by Nigerian writer Abi Daré) before couch and television time in the evening.

Lawn Victory

Sunday was calm, bright and sunny. And joy, joy, joy! The front lawn I seeded a few weeks back is germinating. Slowly what was a field of dirt is becoming a blanket of green. I’m relieved and very, very happy. Inspired, I addressed part of the backyard lawn that needed some attention yesterday: I spread seed where the lawn is thin.

In the morning I made another batch of Asparagus soup, a new passion and so, so easy to make. Then I cut some Ivy from around the yard and potted it with rooting hormone. My house faces north and the garden lining the front wall of the house never get sun, so greening it is difficult. Using Ivy is my new strategy.

The afternoon was uneventful. It was not as warm as was Saturday when I went for my afternoon walk wearing naught but a t-shirt on top. I did some reading, napping and went for a lovely sunny afternoon walk with Her Highness.

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All our island streams have dried up and local birds are already flocking to my fountain. It is unbelievably dry here and there’s no rain in the forecast. It all makes me scared about the potential for another forest fire Summer like the one we had a few years ago when we lost so many sunny days to skies full of thick smoke full of microscopic precipitants. 

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And so, another week begins. I expect to spend a fair bit of time outdoors doing yard work. It’ll be another week like so many of the recent past. But come Thursday, I get busy. Thursday, I see the dentist, Sunday I go to Nanaimo for my shot, to shop and to indulge myself with a White Spot hamburger, Tuesday I see Dr. Shoja on Zoom and get a chance to discuss “flare ups,” and Wednesday I see my doctor over something that turned up on my last blood test.

I’m looking forward to having all those things to do and some variance in my day-to-day life.

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Today will likely be lovely and warm this afternoon because the wind, that was chilly yesterday, is gone. I reckon that my afternoon walk with Her Highness will be wonderful. 

Comprehension

The brief period of emotional Hell that I recently endured, the ‘flare up,’ overloaded me. However, I learned a lot about the nature of my mental ill health from it. 

When I was a teacher, I learned that to help students discover and learn about something is much, much more valuable than telling them. As a student of screenwriting, I learned to show, not tell, so that audiences could learn in the same way. What follows was experientially learned ….

Fred, my beautiful large Bengal cat, called to me yesterday. I started speaking to him as I sat down on the bed and, by the time I reached out to stroke his thick, beautiful tiger-like coat, he was already purring.  

I spoke fluently with him as I explained to him, who I thought he was—a kind, gentle, and loving soul. I told him I noticed how often he groomed Ethel, whereas I have never seen Ethel groom him, and that I notice that it’s always him who goes to sleep with her and it’s never the other way around. And I told him that his few feline behaviors that I wish weren’t in him, are far, far outnumbered by his blessings. They make him a lovely normal male.

A question popped into my mind: “Why can I talk with my pets and not people” What I came up with, is that it’s all about trust and egos.

A wise professor of mine once taught me that most of us can’t remember names because, when we are being introduced to someone, we focus on ourselves. We worry about how we present—the handshake, the smile, etcetera. It’s ironic that when we are introduced to someone, we think about ourselves. Animals don’t do that.

Individually and socially in contemporary society, voice is being sought: Gender is being parsed, self-knowledge and self-fulfillment and individual assertion are primal social values; native and minority populations are demanding representation. We all want to be seen and heard. As humans, regardless of our sociability, we remain focused on ourselves, both individually and collectively. It’s universal, we’re all doing it. It’s our ego, a force in our brain.

If I could see people as I see Fred, I could talk to them. The reality is: The hardest people for me to speak with are my friends. The more I love you, the more I have to lose should I err. The more I love you, therefore, the more I think about myself. And in me, that causes my symptoms to flare.

With Fred, I fear nothing because I’m so secure in his favour. I have no need for self-monitoring. I can’t fail with Fred.

There’s also, ‘trust.’ When trust is the controlling factor of your capacity to speak, it becomes a complex concept to ponder. I wrote: “the more I love you, the more I have to lose.” Did you accept that, and keep on reading? Most would. The same is true: “The more I trust you, the more I have to lose.” 

I understand ‘trust’ to be the absence of vulnerability. I believe that to change in a way so as to correct my speech and stop my seizures, particularly with friends, is likely impossible for me again. I believe that for me to become vulnerable is impossible and that’s how, now, I understand my disorder.

When I’m trail walking and encounter strangers, I’m comfortably fluent. I have nothing to lose with them, so speech comes readily. I reckon I finally comprehend how this mysterious malady I have works. It’s not what are my triggers? It’s what isn’t?

Other things thing I know: To best enable my speaking with a friend is to be here, one friend at a time. The farther I get from that level of basic comfort—the further away in location, the more people, the more noise—the worse my speech and seizures get.