Regret

I regret posting my letter to Dr. Shoja. I had an attack of mania and that accounts for me writing it, sending it to a couple of friends and posting it on this blog. I’m full of regret.

I did gain some insight into what it means to have a neurological problem, but it was not the ‘come to Jesus’ moment I thought it was. I embarrassed myself. I reckon the ticket I got for Sheba (see below), the unfairness of the process, my water problems and the constant frustration of my speech drove me to it. Let’s pretend it didn’t happen, shall we?

•

I am pissed. Really pissed, because a woman filed a complaint about Sheba to the animal control agency in Nanaimo and on Wednesday, a control offer (who was lovely and kind) came to give me a ticket—no fine though. 

The woman claimed Sheba was aggressive and charged her. It’s just not true. Yes, absolutely, she barks and she’s big and loud. But there was no aggression and certainly no “charging.” The woman lied or exaggerated, and she was believed. I had no chance to offer my side of the story.

It happened a few days ago, I arrived at the 707 Park where dogs are allowed to be off leach, and as soon as Sheba got out of the car, she started barking because the woman was there. She, I’m afraid, barks where other people are around. It’s long concerned me, and I talked to the fellow who brought her to me.

He figures that Sheba associates strangers with me having seizures because I have 90% of my seizures in the company of people. But her tail is going and she’s not at all aggressive. She’s an obnoxious barker. 

I always call out as strangers arrive on a trail, saying she barks but is harmless. If they ask me to, I will go to the side of the train and restrain her until they pass. Even if they look scared, I do that. I’ve never had problems until the other day.

I wrote a complaint to the animal control office and asked why she is believed without any witness and without any consultation with me. They have, it seems to me, reinforced the woman’s unfair and biased behaviour. Sadly, I could not speak with her because she was too busy being angry and yelling at me. I go mute in the face of aggression.

Just fuck!

•

Two months ago, as of yesterday, my fluency disappeared. One month ago, as of yesterday, I started ASL. One day ago, my usual state of happiness returned because of my ‘unifying theory.’ It was a day to celebrate, so it was apt that last night I went out for dinner with Eoin, François and Jay. It was a blast and we’ve resolved to go out together for dinner every month.

•

I love being back at studying after a couple of days off due to the demands of fixing/monitoring/worrying about my water system. I’ve just begun Unit 7, but I’ve spent most of my time reviewing the vocabulary of units 5 and 6. Many signs didn’t stick as well as those of the first few units.

•

I passed Nancy, a lovely, lovely neighbour of mine, on the street. I wound up telling her (with difficulty) about my ticket for Sheba being “aggressive” and “charging” a woman. She has two lovely old canine soldiers, so she’s calling the animal control office tomorrow to find out why I wasn’t consulted and how I can dispute the ticket. Yay! She knows Sheba is not aggressive. I’m so glad she offered to help. I hate that an angry irrational woman was believed without investigation.

•

I was thrilled, this morning, to get an email saying that I’m going to have guests! My friends Dianne and DR are coming to visit for a couple of days, and I am thrilled because I’ve found a way to speak better—much better. I mean it’s weird ‘key word’ talking, but it enables me to convey more complex thoughts.

Know Yourself They Say

Yesterday was, perhaps, one of the most significant days of my life.

When I was just a wee boy, maybe six or seven years old, my best friend’s mother told me what it meant to be adopted. I’d always known I was adopted, but I didn’t know what it meant. To realize that the Tyrells were not really ‘my people’ somehow helped me understand the distance between us.

Yesterday, it seems to me that a similar thing may have happened. I’ve known for two years that I had a neurological condition, but yesterday I may have come to an understanding, a profound emotional/intellectual understanding of what that it means to have such a condition.

I wrote a short essay about my serendipitous revelation, my epiphany, to Dr. Shoja late yesterday and sent it to her. I’ve posted my letter below because if I am correct, I feel I have reached the top of the mountain of knowing oneself.

I see Dr. S. on Monday. My post next Tuesday will confirm, or not, that my new understanding of myself is valid.

I can never date memories, so I can never be sure of how old I was in my memories, but the ones I want to discuss may have happened during puberty, that’d be my best guess. On many nights, I would see the walls of my bedroom drifting away from me. It looked like the walls were shrinking—that’s what I’d see out of my eyes like it was real. But in my rational mind, I knew that couldn’t be happening, and the disparity between what I was seeing, and logic made me EXTREMELY uncomfortable.

I would go to the bathroom and close the door and turn on the bright bathroom lights. And I’d lie down in the empty bathtub. I remember all my thoughts and fears from those nights. I’d lie in the bathtub to, in my mind, amplify the lights in the room. I wanted as much light as possible to get into my eyes so that I could to not see walls moving.

I never told anyone. No one. Not ever.

In my thirties, I discovered Oliver Sacks. I read almost everything he published. I watched a documentary series about him as well. I loved him. I loved the personality of his writing and his incredible empathy. I couldn’t be more impressed by another human being.

One reason I felt that way, is because he ‘wrote about me’ in one of his books. Not about me specifically, but about the disease or disorder that gives a person hallucinations like mine at night—he specifically mentioned receding walls. Reading that made me feel less weird. I felt relieved to know that I was not alone, and that I had an explanation.  It rationalized the irrational for me.

But I only told Steve, my first and only true partner.

On Jan. 26 of this year, in the morning, I asked Regina, a woman I really respect and admire, and who also loved dogs, if people felt for other people what I feel for dogs. And when I asked her, I thought to myself: Geez, that sounds like a question someone with autism might ask.

On the same day, in the afternoon, I heard the announcer on the radio suddenly mention Oliver Sacks, so I listened. The announcer described Oliver Sacks as a ‘famous neurologist’ who ‘wrote a series of books about…’ and I didn’t hear the rest. I thought: About me. I’m in those books. He wrote about people like me.

Then I thought: Those hallucinations way back when ... this FND thing is linked to those hallucinations. And then I found myself wondering if it was also linked to many questions that I've had about myself my entire life. Questions like: Can I love anyone? What does loving feel like? Why was I so good in math? Why do I like patterns and doing rote things like my dresses so passionately? Why the incredible social fears. Why, at university, did I believe I wrote an exam in a very elaborate room, but when I went back, the room it was drab and normal looking. Why I could not go into restaurants easily on all my solitary vacations. So, so many odd things….

Then I had an emotional/intellectual epiphany. I thought, I’m one of those Oliver Sacks people.

If I’m ‘one of those people’ everything weird about my life makes sense. Youthful experiences, the hallucinations, the emotional distance, the not making eye contact, the obsessions, the migraines, the speech, the FND. My condition, whatever he called it in that book, allows me to link all the inexplicables of my life in one simple unifying theory. I’m one of those people.

I love believing this theory because I love having a unifying theory.

Question: What do you think of my understanding that my neurological condition is akin to being on the autism spectrum? I’d greatly value a medical health professional confirmation of my theory. I don’t want to tell anyone about my new understanding if my theory doesn’t have merit.

I’ve felt enlightened by discovering this theory. It makes sense of my life; it absolves me of guilt and shame and weakness—especially weakness. I have felt so odd in many ways, especially social, I love patterns and so on. And I’ve been burdened by secrets.

My theory makes none of my secrets things I need, any longer, to hide, to be ashamed of. 

I feel like a person who has found faith. I feel redeemed by my unifying theory.  

Dr. Shoja: Am I correct to think of myself as akin to someone with autism?

Does this understanding of myself absolve my custodial parents of exclusive responsibility for my condition? This has been the narrative of my life until now. Does my theory absolve, to some extent, their non-attachment? Put another way: Is there a genetic component to being the way that I am? 

Yesterday felt profound to me. My theory gives me an emotional/intellectual understanding of myself—it gives me a narrative that replaces chaos with unity/cohesion. A theory, sprung by a radio announcer introducing Oliver Sacks, has become a gateway to living the rest of my life unburdened, an insight that seekers of universal understanding seek: Enlightenment.

Books, spiritual leaders, scholars, they all say: Find yourself. My theory makes me feel like I have found myself. I want my theory validated, because I know how good it feels to come out of the closet. An official diagnosis would thrill me. I would understand myself profoundly. I’d feel clear, clean, valid, deserving. I’d be able to explain my symptoms to friends in a comprehensible way and be at peace with myself.

I found both my birth parents. That was something I thought would never happen. I have rights I thought I’d never have as a gay person. Now, I may have found me.

Question: Good ending, eh?

Party a'Commin'

After a few days off, it felt very good to be back to studying, although some signs are so similar, I worry about confusion as I build up my vocabulary. Yesterday’s focus was on words for friends and family. Jay brought me a book he had on “manual English,” but the drawings can’t compare to video instruction on signing because so much of signing is movement. Studying and reading. That was my day yesterday. 

•

Putin. What human waste is this man! The aggressive monster warned the West that he’d take “retaliatory measures” if the U.S. and its allies reject its security demands and continue their “aggressive” policies. What the fuck? As I said yesterday: I’m glad that I’m old and on my way out.

•

It’s party time at Pinecone Park. This afternoon, I’m video chatting with Dianne, and tomorrow I dine with Jay, Eoin and François at Woodfire, Friday I do some baking (yea) and eating, and Saturday is dinner and scrabble here with Ali and Peter. Sunday is leftovers, Around the World in 80 Days, All Creatures Great & Small, and Monday I have an appointment with Dr. Shoja. 

•

For the past five days, it’s been cloudy, cold and damp, but there’s been no rain. And there’s no rain in the forecast, although there is a chance of showers on some days. It’s been rather wonderful to dog walk without rain. 

Next week, it’s February, the month when we often get snow. My God, I hope we don’t. I also hope that there are some sunny days because I’m getting twitchy about doing some cleaning up of my yard. There’s a zillion wheelbarrows full of forest detritus everywhere. Pinecone Park is looking uncared for and I want to clean up.

Until tomorrow…. 

Back to Studying

I'm packing now.  Oh to be rich. And man-oh-nab, does this fellow know

how to wear a pair of pants!

I've found another listing. I'm so suited for life in the house above!

•

Oh, the glory of running water and life without anxiety! Monday was such a great day, simply because nothing was wrong. I’d sit down and feel so light; there was nothing weighing on my mind. Plus, Winter is one-third over!

I walked Her Highness with our friends and then went into the village to get some baking supplies so that I could pour my heart and soul into making a cake for Kevin and Shelly, to thank Kevin for all his help with my water system.

Then I got to baking but my bake was complicated because there was a power failure. Damn! But I was delighted to welcome Ally, a neighbour I recently met and adored immediately. She came by with cookies and so I invited her and Peter to dinner on Saturday. We’re going to play Scrabble. I’m excited: New friends and doing what I like best now that I can’t speak very well—playing a game.

•

I’m lamenting the creation of the Internet.

At first it astounded me. It brought a massive compilation of human knowledge into my home, and I was amazed and thrilled. And email and video chatting. It was a huge advancement, it seemed to me.

But the Internet has killed the newspaper industry, except for certain exceptions, and they’ve become sensationalist and panderers to niche audiences in order to financially survive. And that, in combination with the Internet which facilitates the spreading of lies as readily as it informs with fact, is threatening social stability.

I’m appalled by how much press absolute idiots on the right get in leftist news organizations. Why do they write about people who say and do the stupidest things? Why to the help spread ignorance and irresponsibility?

Some things make me glad I’m old and soon to depart.

•

I’m still not back to studying. I wanted another day off yesterday, to chill and to bake the cake. But I’m getting back to it today with abundant enthusiasm. 

 

Ex-pope Benedict apologizes for lying with another lie: He says he ‘made a mistake’ when he said he was not at a meeting informing the papacy of sexual misconduct. Suddenly, he remembers after proof of his attendance is revealed. And then there’s Robert Kennedy who says being an anti-vaccine activist is worse than being Anne Frank. Sigh.

•

You want dinner here Saturday? Yes? Okay, you eat special. Okay. Me make garlic tart veg, and cake. 5:00? Five half? Six? What you want? … (Ally asks me if I like games.) Yes! Me love games. Best way visit me. Less talk, more play. (She asks me if I like Scrabble.) Oh yes! You lose. Peter lose. 

That’s how I speak now. I still stutter, and there are gaps in my speech, some a few seconds long, but I can get ideas across. It’s working well for me with some patience/understanding required by my friends. It’s as though I’m transitioning because my ‘key word’ speech (my term) is a lot like signing.

At 4:30 yesterday, I had my weekly session with Michelle. I love her and learning new signs. I couldn’t wish for a warmer, more engaging, kinder coach. I love signing so, so much! I had three very mild, short seizures; I learned how to sign, “seizure.” 

I’ve realized that I’m learning to sign, not to interact with deaf people, but as a tool that may allow me to become a far more fluent speaker. I have good reason to believe that I’ll be a more effective communicator in the future, perhaps mixing signing, gesture and some words. 

What it comes down to is: response time. If I must write sentences or type into a speech generator to converse with my doctor, the doctor must do a lot of waiting. The gap is even more irritating between me and a friend. I foresee being able to eliminate that gap; learning ASL is my therapy. 

I know where I’m going. The December decline in my condition (I learned how to sign that, too) has been a personal earthquake, and I’ve been having to do some rebuilding. My decline really threw me: every day felt so similar, I felt emotionally numb, I had no goals and I felt burdened by my condition. I felt all that, but not unhappy, or angry or bitter.

Learning ASL has been a positive emotional double-whammy for me. Having purpose and a vision for a better future has hit me like a drug, giving me a great high. Michelle adds a magnificent other element: encouragement.

As I baked my cake yesterday, I kept getting little rushes of joy every time I turned on the tap, flushed the toilet, and did laundry. And then Ally’s visit and making a date for Saturday night gaming. I had a very good day.

I know where I’m going.

Put another way: I’m not lost any more.

This is my life with FND.