Making Lemonade

It was April 9^th when I admitted myself to hospital, unable to speak and in a state of considerable sustained agitation. It was the next day that I was told that a form of temporary mental illness caused by emotional distress. Two months later, the psychiatrist to whom I was assigned, said the emotional distress was PTSD.

Last week, Dr. Shoja told me how often we would see each other for the rest of my life and when she did, I wept with relief to know that it would last that long. I count on that relief every day and never take it, or Dr. Shoja, for granted.

However, the way PTSD feels to me right now has me thinking of my very recent history differently: On April 9^th, I turned my self in. The next day, the charges against me were explained; I was found to be guilty by reason of insanity, my sentence to be served as house arrest. I am assigned a parole officer whom I am to see once a week for a year, once every two weeks for a second year and then bi-annually for the rest of my life.

At least I have a nice cell. And in truth, I can get out. But on the Labour Day weekend, I was caught on the lam (when I collapsed on the seawall). I was restrained (literally), thrown into a paddy wagon (ambulance) and taken back to prison (St. Paul’s).

My parole officer saw me the next day. She advised me to use the ankle bracelet (medications) I’d been given so that I could safely and legally go outdoors. She understands, though, how the bracelet makes me feel like a felon.

So I stay home with my projects and I sneak out for food and other supplies. I don’t have to wear my bracelet to go to and from any appointments with the prison and/or prison officials, I only have to wear it on days that involve doing things with other people.

All this, and I didn’t do the crime. The crime was done to me and I am still feeling victimized by the perpetrators.

I recently saw a poignant portrayal of a victim of rape on television by an accomplished actor. She presented a flawless and moving performance of a role that was particularly well written. I sat motionless, silent and transfixed because she sounded like I feel. She was expressing the frustration, anger and sadness of living with the life sentence that comes with trauma.

A victim of abuse is like the alcoholic who still goes to AAA and still calls himself an alcoholic even though he hasn't had a drop in fifty years.

I will never stop feeling this way. That’s why I obsess over pretty things: Everything is pretty in my cell and there is an abundance of pretty scents available for release: cologne, incense, soaps, candles, sugar on the burners of my stove and vanilla in the oven. I wear pretty clothes and I’ve been making the prettiest things I can all my life.

That’s my compensatory strategy — making lemonade. Thank God for sugar.

Scene of the Crime; Crin-O-Line

Thursday had me choose to do an odd thing. I went back to where I collapsed on the seawall — actually to sit on the bench where the particularly nasty seizure occurred that got me ambulanced and hospitalized.

Saturday year of rain fell. (It was a sad day, too; Edward Albee died.

I had my electric fireplace on to make the place feel cozy and I binge watched American Crime on Netflix.

I finished the very simple crinoline during the week. (I loved making something so retro.) I bought an old frame made to host a wreath and took it apart to get the wire circles I needed; it was a fabulous find. I made the web with ribbon.

While I watched season one of A.C., I started on the peacock “slip.” I got as far as I could but I need green ribbon to finish it. Tonight, while I finish season two, I will make more of the eighty feathers I need.

Last night, Robin came over for drinks and dinner. She was the first person with whom I’d spoken since Wednesday. I am still shocked by my stutter.  

When I was last with Dr. Shoja, we discussed what “better” meant. She keeps saying that I’ll get better and I believe her. But I am wondering if “better,” for me, means merely seizure-free or if it includes not stuttering. It’s a question to ask her next week — or not. Sometimes you don’t want answers; sometimes answers kill hope.

My Complex Recovery Plan

Once a week for the first year, then bi-weekly for the second: That’s my treatment plan with Dr. Shoja. Plus, I am entitled to tune-ups for the rest of my life. I was overcome with relief when she told me, perhaps because the past two sessions with her have been particularly insightful and fulfilling.

Perhaps most interesting was our discussion of the mantra: “You’re going to get better.” The EMTs that have treated me during each seizure crisis and Dr. Shoja say it all the time and I’m always very happy to hear it. But do I believe it? Do I believe them?

I can’t imagine medical professionals being anything but encouraging, but Dr. Shoja truly believes it.

“Don’t you believe it?” she asked me.

“It all depends on how you define better,” I said. “I’ve decided that ‘better’ is not what I seek. I’m seeking remission.”

I prefer the word “remission” because — to me anyway — it means that all symptoms go away and that life returns to normal but the potential for the symptoms to return continues to exist and that makes one prudent about how one leads one’s life.

(Dr. Shoja encouraged me by telling me about a patient, R, who endured symptoms like mine. She, however, could not get out of bed so she was in far, far worse shape than me. She now is thriving.)

At another moment, I said: “I think that my condition has me feeling a deeper sense of happiness prior to anything I experienced before the onset of these severe symptoms.” Her response made me feel very happy and proud of myself.

She was very positive about my resumption of crafting — making my peacock dress. When I told her I was making 80+ feathers and that each one took about fifteen minutes to make and that I love work, she said it was a form of meditation. And although I wouldn’t have used that word, I undertook the project for the peaceful positive contemplative feeling it gives me.

Medication, meditation, crafting (a form of meditation), walking (another form of meditation — especially when done in nature), writing (again), physiotherapy, psychotherapy; all these activities are part of my complex recovery plan.

Re-Summer

Dahlia's I passed today stunned me. I isolated the blossoms and put them on a black background. The peacock dress is coming along. I found metal rings today with which to build the structure.

Psychogenic Non-epileptic Seizures (PNES)

This information from the American Epilepsy Foundation gave me a pretty succinct understanding of my seizures.

Psychogenic nonepileptic seizures (PNES) are attacks that may look like epileptic seizures, but are not caused by abnormal brain electrical discharges. They are a manifestation of psychological distress. Frequently, patients with PNES may look like they are experiencing generalized convulsions similar to tonic clonic seizures with falling and shaking. By definition, PNES are a physical manifestation of a psychological disturbance and are a type of Somatoform Disorder.

For some patients with psychogenic nonepileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder. In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body.” She postulates that when a person experiences trauma such as physical abuse, sexual abuse, witness to violence, his/her body can absorb this trauma. Therefore, a seizure is the body’s way of expressing what the mind and mouth cannot.

Understandably, many patients’ first reactions upon hearing they have PNES, and not epilepsy, is one of disbelief, denial and confusion. That is because mental health issues come with highly stigmatized labels such as “crazy”, “insane” etc. These stigmas are embedded in our language and even more deeply in our unconscious belief system. However, people with PNES are not “crazy” or “insane”. Some of them are victims of trauma and their recovery from the trauma as well as the seizures depends largely on their ability to overcome the stigma and follow-up with a mental health professional. “PNES is a real condition that arises in response to real stressors. These seizures are not consciously produced and are not the patient’s fault.

Why is that last sentence in bold? Because I have to keep remembering it to offset the feelings of guilt and shame I have due to my seizures. They make me feel that I am weak; that a stronger person would carry on on in spite of past trauma.

I’m on a roll.

I’m on a roll.

I’m performing my piece (see previous post) on November 2^nd at The Flame. I’ll be doing it medicated, of course, and Dwight will be there along with some other friends. I’m actually feeling quite confident because it is all in voices taught to me in therapy (and not my stuttering voice).

Also, I am feeling okay about the peacock dress I am making (see above). It’s a purposeless but highly stimulating project. What you see in the photo above are paper feathers on the dress form.  They’ll all be wired together into an adjustable costume once I have a zillion of them made.

My last dresses were all period costumes and made entirely of white paper; this time, I love working in colour.

The Speech That Got Away

I used to tell stories with a local storytelling collective called, "The Flame." Obviously, I haven't spoken at it for a long time, but last night I "performed" the piece below singing most of it, using my speech app for some of it, and speaking as Rand, my Aussie character voice taught to me in therapy. I  did it for Dwight who's my performance mentor. It was he who first got me on stage, and he thought this worked.  I've sent in a proposal to do it to Flame curators. If I'm green-lit  I will refine it.

(Singing.) Why would someone with no voice kinda sing a song?

After this, will The Flame, be looking for a gong — or a hook?

Why would someone meant to give inspiring oration,

Make this noise that’s certain to destroy his reputation?

It’s so perverse, to speak in verse

A fella screeching acapella.

Well…. here’s the thing,

I have to “sing” to earn my bread and butter.

‘Cause if I talk, I stutter.

If I tried and tell my story in the normal way,

I’m certain every one of you would want to run away

To heal your ears and drown your tears in a vat of Beaujolais.

So if you feel hysteria,

there’s staff her to take care-a-ya.

As I “sing” to you this aria

about why I speak in song.

What could possibly go wrong?

On April ninth 2-0-1-6, the day that dawned was grey.

This retiree was full of glee — another day to play.

Then, when I saw my pussycat, he made me want to say:

(I try to speak.) “Leon…?

 (Singing.)

Holy fuck; speech amok

Dear God, is this some kind of joke?

I wonder if I’ve had a stroke.  

 (I try to speak.) It felt like doomsday

My voice had gone away.

I start to cry and then I bawl.

I can hardly breath at all.

Snot descending, pounding heart;

Trembling hands; is this the start

Of something worse?

Will I need an ambulance

Or a hearse?

Call 911. (I try to speak.) Can you please…?

(Singing.) No, that’s no good …

My talking can’t be understood.

Out the door and down the hall,

Stoned on rushing cortisol.

Across the street to see St. Paul;

Arms not working; constant jerking

Muscles tense; hands like claws

Grinding teeth; locked jaws.

(Speaking as myself.) Doc: It’s like I’ve got CP

What the hell is happening to me?

(Singing.) Calmed by a nurse; CT of my brain,

No tumor or aneurism. They can’t explain

Why my lips don’t work, and tongue’s askew —

No speech no matter what I do.

Hearing weak cognition blurry

The doctor says, “Relax, don’t worry!”

That soon they’ll have me back to being Chris.

(Speaking as me.) But will I have a voice like this?

(Singing.) In spite of, essentially, oral castration

I can achieve communication.

I’ve character voices – more on that later

I’m an innovator, a demonstrator

Using notes, and apps and improvised sign language.

Because I adhere to the adage

That to live without expression

Can lead to a depression

And a life absurd.

Everybody must be heard.

Once I had a best friend who suddenly went blind.

And in defiance of his malady Pete found himself inclined

To do the things that sighted people do; to live his life unbarred.

And prove that he was living life; I was his bodyguard.

He bought paintings sold at auction, and taught himself to ski,

So when I awoke without a voice, I thought of him and the degree

To which he’d risen ‘or his losses, and so I resolved to do

Something brave to honour Pete…

That’s why I’m here in front of you.

Not long ago I earned myself a taste of minor fame

By signing up to tell a story here, proudly at The Flame

And back I came, and then again; in all, I spoke six times

But never once, while standing here, was I inclined to rhymes.

Now where was I? Oh yea…

Mustering my wherewithal

On a gurney in the hospital.

After a little indecision

St. Paul announces a decision

On a VGH admission

Where they have a good clinician,

Can lead the inquisition

As to why there’s been attrition

In my voice.

He isn’t gentle;

I’m temperamental

Because the title and position

Of the consulting new physician

Makes me blink

‘Cause she’s a shrink.

Who understands psychosis

And she’s got a diagnosis.

The amygdala inside my head

Is stuck on fight  — or flight instead.

I’ve a complex malady,

I’ve been felled by high anxiety

She says I have P-T-S-D

So what’s she saying? That I’m nuts?

I’ve got this awful feeling in my gut.

But at least it isn’t cancer.

At least I’ve got an answer.

She says that pills and psychotherapy

Will bring me back to being me.

Dr. Shoja says the reason

My amygdala is treason

Is the past I tried to hide

And the anger deep inside.

She says the way for me to fix it’s

To talk and not resist it.

I’m to see her every week

Talk therapy for someone who can’t speak.

The first way I communicate

Is a bit inadequate.

I’ve an encyclopedia

On technical media.

(Speech generated from my speech app.) Hi. Wanna come to my place and have wild sex with a guy who has PTSD and consequential seizures, erectile dysfunction and a stutter?

The app is handy for situations

Of anticipated communications

But for real life,

It causes strife.

Shoja’s colleague’s a solution

To help me with my elocution

Dr. Ramage says the thing

To do’s not talk, but sing.

It’s too bizarre to think of singing

Of my Dickensian upbringing

And so I’ll simply say

That my mom gave me away

To mother number two

Who did things no one should ever do.

And then one day

She was taken away

And Dad took a lover

And voila, a new mother.

But I was done

My soul was numb

For me at home

Was being alone

I found sanctuary

In life solitary.

(Stuttering SLOWLY as me.) It’s very plain the strain is in my brain.

(From my app.) What was that?

(Stuttering quicker as me.) It’s plain the strain won’t let me talk again

(From my app.) Again.

(Singing slowly.) It’s very plain the strain is in my brain

(From my app.) I think you’ve got it. You can unlock it.

(Singing with enthusiasm.) It’s plain the strain won’t let me talk again.

(From my app.) Now try to stop it. Now agitprop it.

Now once again, where is the strain?

(Singing.) I’ve explained. In my brain.

(From my app.) And how can you ease that strain?

(Singing.) I must retrain; then maintain

I must contain the strain that’s in my brain.

(From my app.) Bravo!

(Singing.) Reclaim again control of my domain.

(Singing.) Okay. I’m sorry.

Now on with the story.

I was a child prodigy

With honours on my pedigree

So it’s been really hard for me

To hear what others think of me

‘Cause part of having PSTD

Is having seizures too you see

That trigger onset syncope.

I thrash and moan but cannot speak

I fall because my legs go weak

And that’s when people say of me

He’s drunk, don’t worry, let him be.

Or worse they think I’m drug debris.

Then someone dials 911

And back I go to see St. Paul,

Back on a gurney in the hall.

But this time, I’ve an assistant

And he can be quite insistent.

(Speech generated from my speech app.) Hi. Wanna come to my place and have wild sex with a guy who … (Speaking as me.) 

Whoops. Wrong one.

(Speech generated from my speech app.) I have PTSD and it causes me to have psychogenic non-epileptic seizures and a severe stutter. I do not require hospitalization; you can confirm this with Dr. Shoja at VGH or on my medical records. My condition and these seizures are understood and I am in treatment but symptoms remain problematic at times. Today was just a bad day. I can go home. Thank you.

(Singing.)  While Dr. Shoja treats my brain

Dr. Ramage helped regain

My speech. Use a voice, she said to me,

Of someone I see on TV.

By using my imagination

I can achieve liberation.

(Speaking in an Australian/South African accent.)

Fore example: This is a voice I call Rand. I took the name from South Africa’s currency. I know my accent is crap. I watch an Aussie series on Netflix and for my last vacation, I spent a month in South Africa, so Rand is an embarrassing mixture of two accents.

And as you’ve already heard, I have a beautiful singing voice I call, Razor. As in death by…

My doctors explained to me that we use neural pathways to do many of the things we do including speech. They explained that the pathway I use to produce my authentic voice, my Chris voice, to employ the clinical term, is fucked. But singing and speaking in accents uses different neural pathways.

If I use my real voice, I stutter. It’s odd, and embarrassing to say that it’s only when I am not myself that can I speak. Needless to day, this mystifies my friends and me but we’re all getting used to it.

Once Dr. Ramage told me about character voices, Rand was an instant hit with my friends and I was thrilled to be able to speak again. But I had two concerns. One: That people would ask, “Where are you from?” And two — and this was far worse — that some Australian or South African would ask me the same question.

I hate being asked where I am from when I am Randing, because the answer is here, so I have to explain that I have PTSD and that makes people ask how I got it and talking about that part of my life is anathema to me. But I had no idea about what was coming that was far worse.

After a couple of weeks of speaking exclusively as Rand, I went to a cooking course at the Dirty Apron Cooking School, and when I arrived, a gorgeous young woman greeted me in a thick Australian accent. I froze; I wanted to die right there.

The next day, I had an appointment with Dr. Shoja and I told her what happened — speaking as Rand. I told her I felt I was living as a fraud with the phony accent and that, in spite of its practicality, I loathed using it. “It isn’t me,” I said. And so she suggested we continue with me speaking using my real voice but when I went to use it, I couldn’t find it.

Honestly, that was the worst moment of my entire life. Yes, I’d almost died of AIDS; yes, I’d had a heart attack but I’d never lost myself. It felt like I was missing. It was only a few seconds long, that awful moment, but it was the most frightening level of felt panic I’d ever experienced.

Luckily, Dr. Ramage had recordings of our sessions. While I cried and wished someone had invented Vodka pills, she called up one of the recordings on her laptop and played it and soon I found my voice. I was stuttering, but I was back.

Your voice is a fragile thing. And for some of us more than others it’s a critical part of our identity. Lose it and you’re lost.

(Singing.) And that’s the best part, and this is the end,

There’s just one voice on which I can depend.

So from know on, should you see me in the street

This is the voice I’ll use to greet you when we meet.

This is the only voice that brings me bliss.

Say hi to me, and I’ll reply:

(Speaking as me.) Hi. My name is Chris.

Then I’ll curtsy.