Stigma to Success – My experience with Electroconvulsive Therapy

In 2016, this artwork was displayed at an art show. During the showing, someone came up and asked what this piece was about. Typically, I didn’t stay at shows because I dreaded answering questions about my mental health. My art was my therapy, so while it was an open book, I was not. In the past when asked questions, I would panic, followed by an anxiety attack and a quick exit, but I found the calm, the courage and spoke up.

“In 2015, I was in the hospital suffering from severe bipolar depression and received ECT. I drew this after one of the sessions”

“What is ECT” they asked

I replied in an easy way “shock therapy”.

They looked at my art, then at back to me.

“Really? I would have never guessed you had shock therapy.”

At first, I was happy, smiled and said “thank you” because all I was thinking is “well that’s good, they don’t think I look crazy”. But as I left them and the show, I felt deflated, I was my own stigma and I was perpetuating stigma by not speaking up. I was better, healing more and more each day, so why the shame?

I kept reeling over in my mind what does it look like?

To my knowledge, I had never met anyone healed from ECT, so during that art gallery conversation, I thought, great I don’t look like Jack Nicklinson in one flew over the cuckoo nest.

Before my breakdown, I avoided the topic of mental illness in the person and left it to my creating, but five plus years of in-patient to out-patient had taught me a life-changing lesson; when it comes to mental illness, secrets are damaging, even deadly.

After that night at the gallery, I decided I needed to bring a voice to this treatment and to my journey to wellness. I began to write about my experiences and thought, “if I can’t yet speak my whole truth, I’ll write it and that’s a step forward”.

My journey to ECT began many years before the treatment when I formed into Charlton hospital psychiatric unit. My breakdown happened November 15th 2009 after a day of work and cooking dinner. I was frail, mascara dripping down my gaunt face into my red lipstick. I had no want to continue living and the facade I wore for most of my life no longer existed.

I was released after seventeen days, stable but still chronically depressed so from there I was referred to west 5th for more extensive treatment.

In 2010, I saw my first Doctor and nurse at the west 5th campus. But Even with all the efforts and care from staff, I cycled from in-patient to out-patient, different doctors, different treatments, all the while trying to keep my hope alive.

In 2015, after years of struggles, the in-patient doctor suggested ECT. I thought “well this is the end me; they can’t do anymore so they are shocking my brain”.

This illness I felt had taken everything, I felt broken, a shell of what I once was, so what was the worst that could happen? Five plus years of other treatments had failed and my hope of recovering was looking non-existent.

My Doctor explained the benefits and asked me to watch a Ted Talk by the renowned surgeon and writer Sherwin Nuland who underwent the treatment to get his life back. I watched the talk, mulled over the facts and with this new knowledge, I agreed to the treatment.

In my hospital room, I closed my eyes thinking of the ECT I would receive the next morning but all I could think of was the Hollywood portrayals of the treatment and panicked. I stayed quiet because who was going to calm my fears? Who in the hospital had this treatment to tell me it would be okay? I needed someone who lived through this to say “I made it through, so can you”. The nurses and doctors were amazing, but seeing is believing and I had ever met a healed ECT patient.

I had sixteen bilateral sessions and each one was as difficult as the last. Every session I would look over to my husband and say,

“I’m not going to make it this time”

I did make it but it wasn’t an easy road. The stigma of the unknown, lack of information to both my family and I had made us all afraid. We looked to the internet for answers which added to our fears. If you look up ECT you will find a mix that is both clinical and frightening.

The fear with a mix of sadness was evident in my family’s faces after sessions. At times I drooled over breakfast and could hardly open my eyes because of the headaches. Or when I told the same story, I saw the panicked smiles and knew I had repeated myself. They had no idea if I would return, I had no idea.

After a few treatments, I noticed my memory loss was more than I thought would happen. I debated giving up on the treatments but I chose to keep going. I had way more to lose that part of my memory. This was now a matter of life or death.

I decided I needed to make a plan, so I began to write in my journals before treatments. I needed to see if I was improving in my own words. I couldn’t and I didn’t want to rely on the words of others that I was getting better.

After my eighth session, I wrote,

“Today I feel a shift in mood and I hope the bad thoughts continue to dissipate from me”

And another entry after session twelve

“for the first time in years, I feel truly hopeful.”

In 2015, after sixteen sessions of ECT, my cycle of bipolar depression finally lifted.

Unfortunately, when I got home, I was straining to remember events I didn’t write. I felt like I missing pieces, pieces others held and my anger arose. I knew to continue the journey wellness I had to let go, and accept that some memories that would never return.

Instead, I tried to think of my memory loss in another way; how much did I lose not having this treatment? For five plus years I cycled in and out of the hospital, sometimes up to five months at a time. I lost memories by not being present with my family and the outside world.

Five plus years I heard about events, celebrations I missed out on. Art shows where my art showed up but I couldn’t and years of my family struggling for me to come out of the darkness. Determined with all that in mind I began building new memories, which I continue to do so today.

I recently had an art show with this piece displayed again. When asked what it was about, I repeated what I said at the 2016 art show, adding ECT is a different name for shock therapy.

Again, this person replied like the last

“You don’t look like someone who had that done”

I replied

“Don’t believe everything you see in the movies “and smiled

After, we had a conversation about my journey, the stigma surrounding this treatment. To my surprise, they opened up about their struggles as well. On my way home, I felt a new sense of purpose; I needed to do more for stigma and mental health.

So, this year I became a mental health Peer Support Worker and public speaker. I feel I have a responsibility to speak up about the stigma of ECT and mental health for other struggling as I did.

When asked, I will be honest and I say.

ECT was difficult, it caused frustration, confusion, and anger at times towards myself and others. But I want people to know the most important part about ECT….

After five plus years of unsuccessful treatments, fearing my life was on borrowed time, ECT lifted my suicidal depression and put me on a path of wellness.

Today I live each day purposefully, sharing my story, my trials, and tribulations because I know one person can make a difference. I will continue to tell my truth so others can find the hope, the joy and the sheer determination I found.

 

 

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As She Dreams

Written in 2008

And I will be the one to steal the nightmares away
As you dream
I will ravenously ….glutinously eat at all the spoiled memories and chaos
Remembered and forgotten
I will eat with the appetite of a million hungry men
Until my stomach
And Heart aches
Like your has all these years
As you dream love
And I will kiss you
No not like the others
I will place my mouth over yours
And breathe in the ugly heaviness
Your lunatic laugh
Your screams of agony
Mercy !Mercy!Please!
They are all now mine to own
Because I adore you …and want you to dream
I will lay with you in my arms you as quiet as whisper
I as your shadow
I will take your bed of destitute and destruction
Filling my veins with your plague
Keeping me awake
Keeping me only half alive and half sane
Just for you.
To dream of what I always believed you were

.
And I now own the thoughts of suicide
The padded walls covered in piss and cum
The fear of breaking
Of falling
The fear…. always fear in your eyes
Shhhhhhh now baby
We won’t ever speak of this
It is mine
You sleep with dreams love
And when you ask me
Why I never sleep
Why I am so distance
It is because
I hold this for you
This secret
That I can’t ever let you have back
We know what it did to you
I can’t see you like that anymore
I am not that cruel
That I love you so much that I would own your hate
More so than your love
So you can always dream
As I lay awake knowing
I gave you the peace you always needed
But could never ask for.

Infinite Hope

There is a quote by Martin Luther King Jr that resonates with truth for me,

“We must accept finite disappointment but never lose infinite hope.”

Today I walked a winding path with the sun as my companion, my shadow cast behind me. Walking, I allowed my senses to take in the abounding beauty as my fingers graced the tops of the long grass. I walked until I reached the waterfall watching the strength of the water, I observed the trees stretching their limbs, the birds in song, flying and taking refuge and the several inukshuks built at the bottom of the falls. I saw my life at that moment with abounding clarity; I had come full circle.

At the age of sixteen, I first felt the confines of depression. Without the full understanding of what was happening to me, I felt lost, confused and was lacking hope. I turned to what I knew and submersed myself in creating. What emerged was my first self-portrait entitled “The Glass Between Seasons”. Art from then on became an unbiased presence in my life, a place I could go for relief of my moods.

The years continued with swings from false light into darkness but throughout it all, I continued to create. It was when I began a family that I sought out psychiatric treatment for stability in my life. A plethora of diagnoses followed, schizophrenia, postpartum depression, depression, “just a little sad at times”. I was in the hands of Doctors I lost trust with and with that loss, my mental health deteriorated.

In November 2009, I ultimately crashed and was officially diagnosed with Bipolar disorder at St Joseph Hospital, Charlton Campus. This was the first time I was locked away from my family and with a heavy heart I did what was familiar, comforting, I drew with supplies brought to me by my loving husband.

When released, a dark cloud still hung heavy over me; nothing had changed except for a prescription and a referral to West 5th.

I can now say without hesitation, my journey to wellness began at West 5th Hospital. I started treatment as an outpatient, when that failed and I wasn’t stable to remain at home, I was admitted as an inpatient into the waterfall unit. The cycle of in and outpatient lasted for years. During those years I continued to find solace in Art, creating works based on the treatments I was receiving, the people surrounding me and how I was feeling.

Almost Daily I have worked on pieces, thinking if I kept creating I would not lose the essence of who I was. Art was that one constant therapy that never failed me.

Eventually, treatment began to work and wellness began to awaken within and along with emerging wellness more vibrant coloured paintings. Finally, I had made it through my first year free of the inpatient ward and shortly after is when “Infinite Hope” came into my life.

For a year I helped work on the piece “Infinite Hope”. Walking through the doors on Thursdays past silent walls asking myself “will I survive another year of this illness”? But my confidence to answer “yes” was pushed aside by my clinging depression. I continued down the hall to the place where “Infinite Hope” was taking form in both paint and in my personal life.

Now when I walk through the doors, I see a wall adorned with optimistic hues, circling around the seasons we all pass through. This work speaks eloquently of struggle in subject matter, to the crackle of paint where colours break through. Strife created beautiful and hopeful, joy abounding and blooming. Announcing boldly that change, growth are both necessary and beautiful.

In five feet by five feet this mural confronts the once uninspired walls with the determination of wellness and within it lives a heart that goes beyond the painting. I know this by the four enormously giving and humble hearts that worked in unison with me.

I create art for a living and as much as I love to work, it can be a lonely job, one of disconnect with the world and many times my creations show that. But while creating this mural I broke down so many personal barriers, I learned to work on art with others, I learned to show my skills I thought served no purpose but to me, I learned to open up and  share a kinship with others who struggle and those that build one another up, often one and the same.

I healed, I flourished within this Art Therapy group, l started to accept disappointment in the dark years and learn from it. By being part of this group growth merged into my personal creations as well, allowing myself to compose struggle in beautiful ways’ something I never thought I could accomplish.

I am aware my life will never be picture perfect with this illness but I will continue on optimistic of my future, creating through the seasons as they come. But after I have lived a full life, if any of my work survives, may it be “Infinite Hope” a group effort of a work that merits longevity of voice in a place where hope needs to survive.

To all those struggling, hope is clearly infinite, hope is tangible, hope is a grander light than any darkness could ever be and experiencing disappointment does not mean you have failed, it means you have tried and that in itself is commendable and fosters growth to wellness.

When I last stood looking at the mural I asked myself the pivotal question that has lived in my mind for years.

Will I survive another year?

And my answer bloomed with bravery and confidence since the completion of this artwork.

“Most certainly I will”

The mural is a powerful reminder that Art Therapy is invaluable, for life truly does imitate Art.

From my healing heart, I thank my fellow advocates in Art and Hope, Laura, Sharon, Tonya and Judy. Without them “Infinite Hope” would have never come so beautifully to fruition.

 To read more about the mural and how Art Therapy is making a difference visit the Hamilton Spectator article here

 http://www.thespec.com/news-story/7333010-therapeutic-art-at-st-joseph-s-west-5th-campus-unveiled/

Warning High Voltage

I flick the light on and still my eyes onto a singular object to awaken the blur of my dreams .I grab my ragged, paint embellished sweater, fold it around my perpetually cold body and turn the light off making my way through the dark, carefully holding on. Arriving at the kitchen I wait impatiently for the drip-drop of a temporary jolt; two coffees as strong as I hope to be one day.

The light.

The dark.

Are equal places of loss in my mind.

As of now I function within the grey, with a splash of colour from time to time. This is a place to heal, until I can reach the centre “ish” .I am comfortable here, but not content, so I continue on with baby steps towards wellness, still holding the frustration that my illness is invisible to many, but concretely real to myself and those that are within my walls.

 

A flash of blinding light strikes, once a week, maybe less depending on the situation, person, conversation, where I strain to focus.

“Do you remember?” is often a statement attached to joy, smiles and conversation but for me, there is always a pause before the words and sentiments. I watch memories soar out of mouths and go south in grey skies .I can almost reach them ….almost.

My Loves, acquaintances, strangers met briefly are my memory keepers.

And when “do you remember? “rises from words and falls into my chest ,my panic rises ,grasps at my throat then and simmers into sorrow for a brief flicker of dark, because that is all I can allow to seep in .

Others hold what I have lost. This is one part of healing I haven’t been able to let go of, so I tuck it away for another day and move on .If not, I would be certain to slip into the dark, vast waters of depression and I can’t afford to let go , again….

The reason is simple

Because I love some brilliant, amazing and beautiful people.

So tightly I embrace the new memories I am making with them.

The reason for my loss of memory is ECT, the eloquent name for Shock Therapy (and maybe a dash of some other things I’ll go into later). A little over a year ago, sixteen treatments all while my much, much better half stayed in the room while it was performed.

He, my most valuable memory keeper and secret keeper.

Him, the one there as I went under, in more ways than one, even before the voltage.

Yesterday  I went under…in a good way ,rising-up and slicking my wild hair back .Typically I keep my eyes forward and swim ,trying not to make eye contact or human connection with anyone ,but today, In a city of approx 747,545 give or take a few, I lucked out and got an entire pool to myself. I flipped onto my back and stared at the ceiling, white, institutional. I felt weightlessness as I imagined the ceiling to be a Prussian blue night bursting with stars. The weighted thoughts disappeared into the chemical water, and I imagined them getting all sucked into the filter. I felt a flicker of peace; freedom.

And no one holds this memory but me

As I walk out of the pool, the heaviness set in from the chemicals that stabilize me. But quickly, I reminded myself I must be grateful I am alive because of those substances and the people that held me together.

 

I’m here to regain a life I never thought I would make it through.

 

I have been given another chance.

 

So here, in my own words is my truth of breaking down and getting back up.