One Step At A Time

Oh, my dear ones,

When you look down

Find something to look at

Even when raindrops form in your eyes and make puddles

Splash in them triumphantly because you are alive!

Oh, I know your battles

I look down too

Some days I can’t bare to look the world in the eyes

Today I look down

to the kind shoes I had as a teen

When illness had not reached my bones

And I smile

Stick, stones and names didn’t break me

I didn’t break me….

And I look up

Willing, able to fight for my life

Because I belong here

As do you

Oh, my dear warriors

Even when you look down know you are on the battle ground

Pushing forward

Conquering your battles one step at a time

 

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.

 

 

The Remains Of Paradise

 

For 20 years since diagnosed, I have walked past an ever-changing garden on my way to appointments, even winter didn’t suppress its beauty. Its mysterious tender was meticulous in planning through every season but yesterday it was gone. In its place; mashed soil and a path of winding dirt where splendor used to grow.
The scent was gone, the scene was gone, my diagnosis very much in tack. Twenty years of growth, ripped out, gutted.
I looked around, others must know what is missing? But people walked by unaware, too young or too busy to remember. There have been better gardens bigger, brighter, yet this one regardless what was in my mind I always paused before it. This one held significance, memories of my illness and the beauty found while trying to weed and conquer it.
I’ve made this walk most times in solitude but once many years ago I walked the path, my daughters small hand in mine, unaware her mother had to tend to her failing mind. I pointed to the full blooms as she skipped and sang along joyously beside me.
That day, sitting in the office she sat at a table colouring as the session progressed and my eyes filled with tears.
“When will I know?” as I looked over at her
“Know what?” he replied
“If she is me”
He leans back and tells me the odds.
If there is one thing that could break my heart is knowing I was capable of passing on such a cruel illness.
I continued living for her, for my family and I was truly happy for moments, moments I forgot the illness existed and welcomed another child.
The years continued, and my garden grew out of control, tangled, I became distant and thought the best way of them not being me is not existing.
That little carefree girl in 2009 gave me all the love I had given her. With only the help of her father, she became a caretaker to me and her brother. Today, I see the effects, but she still grew wildly beautiful. I could write the endless things she did and still does out of love, but it would be too many to list. She and those I hold dear proved love wasn’t a word but an action.
Since the chaos, breakdown, I was shown compassion, forgiveness for and illness the ones I hold dear know I didn’t choose. I am beyond grateful for the fresh start, living to see how my daughter is as a mother and the strong beautiful girl being raised in her light.
I cannot get back the past, it is gone, its lived its life now I must live mine.
Sometimes things must me ripped out to begin again properly. I must believe this because I have lived gutted, barren and survived.
On solid ground I build my Paradise of belonging with hope, fortitude, and gratitude with those I adore.

 

 

Reaching

My Dreams have long arms

Stretching out like airplane trails

Leading somewhere, I have yet to go

Descending on concrete

Ground

 

My dreams have long arms

Like branches that hang from 100-year-old trees

Snagging my wild hair and untapped thoughts as I walk by

In blinded routine

 

My dreams have long arms

Swinging and swaying around my

Masquerade apparel

As I try and live half alive

Taunting

We are ready

Even if you are not

 

My dreams have long arms

Cut, tend, and dig

Through my rooted depression

Resentment

Seclusion

Restlessly scraping

What I thought I needed to hold onto

 

My Dreams

Of no mercy

Pulling and

Dislocating

My comfort of existing

 

My dreams, their longevity

Have stayed awake, as I lay dormant

Reaching heights, I could not

Holding me up as light ignited my unopened eyes

In a hue of life

 

I embrace my dreams of long arms

Eyes meeting theirs

As they whisper, you have another chance

Hold onto me…

 

2018

The Magic of Life

2018

The last time I said I was magic, I was wearing stoplight red lipstick, black eye makeup, hair ignited as the suited Doctor sat across from me and calmly asked

“April do you believe you are magic?”

“Yes,” I said as I smiled wide, put my fingers out to the sides and wiggled them

Tada!

 

Well who knew magic could cause so much trouble

 

That was my first time locked away

 

And guess what, I found out quickly I was not magic

 

High above the city, I couldn’t Houdini myself out of that glass box ward that took my breath away

 

Now I know science is a thing

And I’m glad it is because science/medicine helped fix my brain… somewhat.

 

However, lulled on lorazepam to take the delusional magic away

Something survived.

 

I leaned on the large glass window; barren face pressed to the coolness my hands trembling. I looked over the city, the beautiful living city, with snow falling so perfectly I felt that was true magic.

It was falling

It wasn’t crashing

The snow danced down onto solid ground.

 

A place I now wanted to be.

Wanting to live became my new magic….

 

It has been 8 years since that moment.

Five and some years to get back up

Different hospitals, different pills, a wee bit shock therapy

 

Zap Zap

 

But the biggest change happened when I changed my perspective of this world.

 

I get up early now, enjoying the solitude now that it is a choice.I listen to music that sounds like falling snow, the dreamy kind that dances,  mimicking the melody as I type.

 

I didn’t used to like the quite/aloneness because my treacherous thoughts were so loud

but over these trying years

I have listened when I couldn’t speak and I have come to hear and see so much wisdom and grace.

 

I know as you read this  your thoughts may be loud, you may hurt, you may be where I was and still go sometimes….but please read on

 

 

Let’s starts with you are beautiful.

So fabulously beautiful!

Not the frivolous kind of smoke and mirrors but your heart. Even if you don’t think its working

place your hand on your chest do you feel it? That is your life, your life to change, mend, to strive to do something powerful.

 

You are not your illness.

Ever.

It is just genetic, tragedies, accident, that created it, but you get to create you, isn’t that amazing!?

You didn’t get a choice of the other things but you get to choose what you make of yourself. It took me awhile to understand this, because who was I without the tragedy, bipolar, OCD, epilepsy and chronic pain? Because while being treated for those I lost track of who I was. Appointments took over my life, so I began to make appointments to find myself again. I went to coffee alone, I read, I took long needed showers and baths, I walked with my face in the sun, I walked in the snow. I wrote, I painted

I created me.

And you can too.

 

You will hear lots of things like “you just have to try harder” “you should smile” “you should get out more “on and on

Let me say this

You are trying, even when you open your eyes, so start from there and build on that.

Not everyone is going to “get “how hard it is just to get up.

For years, I was so angry with people and I held onto that and guess what anger and healing do not go hand in hand. So I began explaining myself and if people understood great, if they did not it was not my responsibility.

I had to leave behind those that did not validate my recovery, as wellness of spirit became my full-time job.I surrounded myself with people who loved me through everything, people of integrity, kindness, honesty.

 

You need to make goals achievable. At first, I made these grandiose goals while housed in a hospital room, it’s only natural to dream that big when feeling so small but I was sabotaging my health and wellness.

I started small, showering, makeup, walking. Then those actions, goals snowballed and somewhere in-between trying my hardest just to live, living became automatic and I began achieving bigger goals.

Now I still stumble, sometimes my brain and heart say “oh no not today” so I go back into that automatic mode and try again.

Always try again

Because inside of me somewhere (that has yet to be found on any scan)

There is the belief that the  impossible is possible

 

Last week before I entered the place the housed me and my depression and now the place I teach art (that was an unexpected goal)

I stopped before I entered

As the snow fell immaculately

Fell slowly enough it could be caught

Fell as though it were not coming from the sky

But from a place of wonderment

 

With my hair half wild, half pinned back

I smiled wide

 

And thought today, tomorrow and all the days I have left I will ignite them with purpose

 

Even if it is simple as smiling at a stranger, getting up on hard days

I will strive to create the magic that is

Life

 

And on occasion

Fingers out to the sides

Tada

(I just won’t get caught this time)

When Time Stands Still

2015

When Time Stands Still

I am 16 again, feeling the warm air embrace my skin, the sunlight illuminate my surroundings. I have Pachelbel cannon playing on my cassette player in the front of my bicycle basket. I feel free. Effervescent free…….

As I sit here my eyes water like the puddles I used to ride through as I listen to those very notes from a song I have not been able to listen to without feeling guilt, shame and defeat. So I kept that song away from me.

Until now.

In the years following, I was given the title Bipolar, a title that changed my life. Although it is not used anymore I prefer manic depression. Why? Because it seems more honest.

Over the years I have believed so many delusional things. I have walked the tightrope of mania wearing the perfect shade of red lipstick, laughing with a wide smile, late nights, wild thoughts and finally self-destruction. I then fell …crashed off the wire into depression, wanting nothing more than death. I loathed myself, what I had done during the high wire act; I loathed my reflection and I tried to stay away from it. I lived in and out of cages, either my own or the hospitals to keep me safe. I felt lost, detached from myself and the ones I love.

Was it my choice to be manic or depressed? No .But is it my choice now to control it, now that I know the signs? Yes.

I also choose to say I am not bipolar, I have it. The tile I choose to take away because I am more than that.

As the high notes of the melody plays in cannon, I feel the pull of freedom and hope the days I can’t keep my head up and days I feel my fate is to end my life are over.Please be over.

I have an amazing title, one I was given and will keep. My title, a mother, a grandmother, a wife.Titles I hold dear because of those that gave them to me.I never thought I would be any of those. They never once took titles away from me; they never once held the disease of manic depression against me. My fight /flight was as much theirs.

I also have been given the title of an artist ….something I never asked for but will wear that proudly as well.

With humility, I will wear those beautiful titles until I leave this earth.

 

Photo at age 16 by my sister Julie