Faces

If you've read through any of my posts, you may have detected a common thread; I am a frequent user of both medical and psychiatric resources in an attempt to get me to a place where life is not just survivable, but maybe even enjoyable.  I am a survivor in so many definitions of the word, and I do not doubt that there have been times in my life that I have had some degree of enjoyment; I just don't remember them.

I have been in a state of 'crash' since Fall of 2015, and when all conventional treatments had been exhausted and rendered useless, we turned to ECT to try and get me back to the living.  Those treatments have robbed me of the majority of the memories since the time I met my husband, but the memories I would have gladly sacrificed prior to then are still for the most part whole.

What this has left me with is many 'faces', most of varying degrees of depression, some that appear to be happy or at the least content, and many many more lost to the vagaries of memory.

My most recent morning, 12+ hours of sleep and still not enough, my first time on my own in 20+ years and not coping well.

Self-care goes out the window the deeper I dive.  My hair is left to tie itself in knots because I could care less how I look to anyone, except sometimes to my husband, and even then it's a struggle.

Finding comfort in anything, even if slightly on the childish side (sometimes it's the child that needs the soothing).

Music, my constant companion.  Played loud enough even the noise in my head can be drowned out for a while at least.

A good day where my smile doesn't have to be forced.  My family brings out the best in me.

My most genuine smile to date; how could I not smile when my husband, my partner, was pledging himself to me?

The beginning of the crash, trying to hold on for dear life knowing how bad things get, but depression won.

A genuine smile.  Things were falling into place, I was going places, and I could breathe.

One of the earliest pictures I have access to.  A snapshot taken at the end of football (that's American football of course) practice and turned into buttons for parents to wear at the games.  I was a badass and could hold my own on the boy's team, even when it was difficult.

I've been in a lot of places and frames of mind since as far back as I can remember.  Depression has always been peering over my shoulder waiting to drag me deeper into itself.  On the days when life is just exhausting, I turn to my family, and know that despite everything they have been through with me they are still here, so I have to return the favour.

Today is Mother's Day here in the U.K. and I don't deserve the children I have been given but I thank god for them every day.

Happy Mother's Day from Newcastle!

PS:  I am going to work back to some sort of schedule working on my blog.  If there is anything of interest you'd like to hear about life here either as a recent transplant or on any topics of life please leave me a comment.  I'm also posting a lot of pictures over on Instagram if that sort of thing is intriguing.

Cheers!

Hard Reset and Starting Fresh

The initial steps taken on my journey to England began over 15 months ago with much in the way of research and reaching out to the specialists that would see me through the harder parts of my illnesses.  At the time my husband first brought up the idea of studying here I was undergoing ECT (electro-convulsive therapy) treatments at least twice a month and at times when I was inpatient I was getting them  three times per week.  When we began looking at moving, there was no end in sight so locating a hospital in the area that could continue my treatments was crucial.  With a little bit of research through the NHS websites, a treatment program was found not too far from the University my husband was applying to.  We reached out to the main physician through email and when we came to visit the city (before making a final decision to move) we arranged a tour of the treatment centre.  Other than the age of the building (old Victorian era hospital), and that within the same building there were separate male/female inpatient units (segregated units are common here and sound amazing if I need the time inpatient), the treatment area was much like what I was used to.  There was a patient prep area where the IV and monitors could be hooked up before being brought into the treatment room where the anaesthetic was given before the seizure would be induced.

The preview trip itself is a blur but I know we came home and decided it was worth it to apply and then see what happened next.  It was no big surprise when my husband was accepted and then a few months later learned he would receive a scholarship that was the final piece to making the move possible.  What did come as a big surprise was that after returning home I completed a few more ECT treatments associated with yet another inpatient stay, and then the decision was made that the treatments were causing more harm than good.  October 31, 2017 I completed my last treatment and came home a few days later.

For me ECT was somewhat equivalent to doing a 'Hard Reset' on a computer.  The initial treatments did not seem to do a whole lot but with major tweaks to the positioning and amplitude of the shock my mood slowly improved.  ECT, even when done correctly, has a major side effect of disrupting memory, and whoa, did mine get disrupted!  A lot of the time it is the working memory from around the time of treatments that are most effected -- things like forgetting names, whether or not a medication had been taken, losing words mid-sentence, and whether or not a certain topic had been discussed with those around you.  When ECT is given with bilateral electrode placement, memory loss is usually worse, and the majority of my treatments required the bilateral placement.  Pro-ECT literature talk about this memory disruption being temporary and that when treatment is stopped the memory returns.  Anti-ECT literature liken the treatments to medically induced brain damage and that memories will be gone for good.  When you are profoundly depressed, manic, or psychotic you are not always in a position to do independent research prior to signing on the dotted line of the consent form.

My memory loss was so extreme that I was trialled on 2 Alzheimers medications to try and slow the loss of everything important to me (neither worked).  I retain random pockets of memories from my early years, and because life is cruel I remember much of the abuse that had led to my extreme depression and chronic suicidal ideation that brought me to the ECT centre.  Outside of those pockets my memory sucks, which means I've lost meeting and marrying my husband, the birth of my two children is largely gone, and most of the last 30 years.  At more than a year away from my last treatment I have lost hope of regaining any of it.  I do have improved word recall (sometimes) and with the help of reminders and alarms can manage most of my own medications (taking them but not prepping them), and can sometimes remember that I've had a conversation with my husband.

My brain has undergone its Hard Reset and now I'm working on starting fresh.  I'm rereading books that I know I've read (and maybe even enjoyed) sometime in the past to try and stimulate connections that may still be there.  I have always been a researcher of some sort so I'm going back to topics I "know" I excelled at and I'm starting at the beginning (most recently learning the basics of genetics, biology and philosophy).  I'm rewatching movies that had some significance in my life or that I enjoyed watching with my family (watching Disney movies with new eyes has been so much fun even if my husband/kids laugh at me).  I have been able to experience so many things with childlike wonder because they are fresh and new to me in my 40+ year old brain.  I write things down because they still get lost and there is so much from NOW that I don't want to lose.

I wonder if/when my depression worsens to the point of being unable to take care of myself or to keep myself safe if I would allow more ECT treatments to be done to get me back on my feet, but I really don't know.  I have to accept that the initial run of treatments (done while inpatient) brought me to a place where I was able to rejoin my family even if I was not really able to participate with them for awhile longer.  The treatments did that for me, but they robbed me of a large portion of my adult life.  I think that there really wasn't a good solution, but we pursued the best solution for the condition I was in.  Could I do it again?  The me of today says the cost is too high but if in a life or death situation I know how far ECT brought me before so I just might have to do it again.

Hopefully it doesn't come to that anytime soon.  Instead I'm focusing on learning coping skills that may bring me out of the darkness of depression, and building a support network that I can turn to when things get really rough.  A fresh start in a city with so many resources is my best treatment option for the present.

An interesting article popped up in my news feed this morning.

https://www.dailymail.co.uk/health/article-6648945/Controversial-electric-shock-therapy-approved-treat-depression-not-safe.html

Take Care,
Cheers

Music Hath Charms: Musicals "Next to Normal" **Trigger Warning**

**Trigger Warning, language, self harm, suicide**

I stumbled across the musical "Next to Normal" while I was being treated with ECT for severe treatment resistant depression and BiPolar II.  It presents the story of a woman with Bipolar I, mania, and delusions.  The early parts of the musical deal with her reaching out for new or better treatments to get life back under control, at least to some degree, and when the more conventional treatments fail she undergoes ECT.  Along the way we see the effects of her mental illness on her husband and daughter, we also see/ feel her delusions and how they interact with every part of life.  It's a very powerful musical and sheds light on the inner turmoil of a woman trying to take care of her family but losing control of herself.  *** All Lyrics from:  https://www.allmusicals.com/lyrics/nexttonormal.html ***

A quick introduction to the characters
Diana- Wife, mom, mentally ill
Dan- Husband, dad, main caretaker
Natalie- 16 year old daughter
Henry- Wanna be boyfriend
Gabe-  19 year old son (real or delusional is a main theme)
Dr. Madden- Primary psychiatrist

Who Is Crazy/My Psychopharmacologist and I

Next to Normal (2008)

[Dan]

Who's crazy, the husband or wife?

Who's crazy to live their whole life

Believing that somehow things aren't as bizarre as they are?

Who's crazy the one who can't cope?

Or maybe, the one who'll still hope?

The one who sees doctors or the one who just waits in the car?

...

[Dr. Madden]

...The round blue ones with food, but not with the oblong white ones.

The white ones with the round yellow ones, but not with the trapezoidal green ones.

Split the green ones into thirds with a tiny chisel, use a mortar and pestle to grind?

...

[Diana]

My psychopharmacologist and I.

Call it a lover's game.

He knows my deepest secrets.

I know his... name!

And though he'll never hold me

He'll always take my calls.

It's truly like he told me

Without a little lift, the ballerina falls

You Don't Know

Next to Normal (2008)

[Diana]

Do you wake up in the morning and need help to lift your head?

Do you read obituaries and feel jealous of the dead?

It's like living on a cliffside not knowing when you'll dive.

Do you know, do you know what it's like to die alive?

When the world that once had color fades to white and grey and black.

When tomorrow terrifies you, but you'll die if you look back.

You don't know.

I know you don't know.

You say that you're hurting, it sure doesn't show.

You don't know.

Make Up Your Mind/Catch Me I'm Falling

Next to Normal (2008)

[Dr. Madden]

Make up your mind to explore yourself

Make up your mind you have stories to tell

We'll search in your past

For what sorrows may last

Then make up your mind to be well

...

Make up your mind to live stronger now

Make up your mind let the truth be revealed

Admit what you've lost and live with the cost

At times it does hurt to healed

...

Make up your mind you want clarity

Take what you know and make it make sense

Just admit what you fear

And soon it comes clear

The visions are just your defence

...

Make up your mind to be free at last

Make up your mind to be truly alive

Embrace what's inside the place that has died

And make up your mind to survive 

I've Been

Next to Normal (2008)

[Dan]

Standing in this room,

Well I wonder what comes now.

I know I have to help her,

But hell if I know how.

And all the times that I've been told

The way her illness goes.

The truth of it is no one really knows.

...

And I've never had to face the world without her at my side.

Now I'm strolling right beside her as the black hole opens wide.

Mine is just a slower suicide.

I've been here for the show,

Every high, every low.

But it's the worst we've ever known.

She's been hurt and how?

But I can't give up now.

'Cause I've never been alone.

I could never be alone.

Didn't I See This Movie
Next to Normal (2008)

[Diana]
Didn't I see this movie with McMurphy and the nurse?
That hospital was heavy, but this cuckoo's nest it worse.
Isn't this the one where in the end the good guys fry?
Didn't I see this movie, and didn't I cry?
...
[Dan (spoken)]
Your mother sin for a new treatment.  ECT.

[Natalie (spoken)]
Okay, LMNOIP, what is that, I don't know?

[Dan (spoken)]
Electro-convulsive Therapy.  Shock Therapy.

[Natalie (spoken)]
You're kidding, right?  That's bullshit.

[Diana]
What makes you think I'd lose my mind for you?
I'm no sociopath, I'm no Sylvia Plath

Wish I Were Here
Next to Normal (2008)

[Diana]
In an instant flashes and the burst might leave me blind.
When the bolt of lightening crashes and it burns right through my mind,
It's like someone drained my brain out, set my frozen mind to thaw,
Let the lethargy and pain out, while I stood in awe.
...
[Diana and Natalie]
Plug me in and turn me on,
And flip the switch, I'm good as gone.
It slits my skin, and trips my brain
And feel the burn, when I don't feel the pain.

Is my brain reborn, or is it wrecked,
In freedom or in fear?
Wish I were here.

Song of Forgetting
Next to Normal (2008)

[Dan (spoken)]
You don't remember any of this?

[Diana (spoken)]
I should, right?

[Dan]
This house and all these rooms
Last Christmas or last year
Out back the dogwood blooms

[Diana]
Do I really live here?

...
[Natalie]
My first few steps, and my first lost tooth
What nothing yet?

[Diana]
Well to tell the truth

[Dan]
Sing a song of forgetting
A song of the way things were not
Sing of what's lost to you
Of time that you never knew
Sing of not remembering when
Of memories that go unremembered and then
Sing a song of forgetting, again

That day our child was born
Our baby girl's first cry
...
[Natalie]
What a lovely cure
It's a medical miracle
With a mind so pure
That she doesn't know anything

Seconds and Years
Next to Normal (2008)

[Dr. Madden]
A little loss of memory is normal
And helpful in forgetting all her fears

[Dan]
I couldn't give a flying fuck what's normal
We haven't had a normal day in years

Aftershocks
Next to Normal (2008)

[Gabe]
They've managed to get rid of me, returned me to the grave
ECT, electric chair, we shock who we can't save
They've cleared you of my memory and many more as well
You may have wanted some of them but who can ever tell
Your brainwaves are more regular, the chemistry more pure
The headaches and the nausea will pass and you'll endure
Your son is gone forever though, of that the doctor's sure
The memories will wane, the aftershocks remain
You wonder which is worse, the symptom or the cure
...
[Diana]
It's been four weeks since the treatment
And my mind is still a mess
And who's left to be remembered
Well it's anybody's guess
Cause my past is like the weather
It will come and it will go
I don't know, even know
What it is that I don't know
I'm some Christopher Colombus
Sailing out into my mind
With no map of where I'm going
Or of what I've left behind
...
[Dr. Madden]
Does the puzzle come together
Piece by piece and row by row?
[Diana]
I don't know, I don't know
Where the fucking pieces go
Cause I don't know how this started
So I won't know when it's done

The Break
Next to Normal (2008)

They told me that the wiring was somehow all misfiring and screwing up the signals in my brain.
And then they told me chemistry, the juice and not the circuitry, was mixing up and making me insane.
What happens when the burn has healed when the skin has not regrown?
What happens when the cast, at last, comes off, and then you find the break was always in another bone?
...
They tried a million meds and
They strapped me to their beds and
They shrugged and told me 'that's the way it goes'
But finally you hit it!
I asked you just what did it.
You shrugged and said that no one really knows.

What happens if the medicine wasn't really in control?
What happens if the cut, the burn, the break was never in my brain, or in my blood, but in my soul?
What happens if the cut, the burn, the break was never in my brain, or in my blood, but in my soul?

Make Up Your Mind/ Catch Me I'm Falling (Reprise)
Next to Normal (2008)

[Dr. Madden (spoken)]
The ECT is powerful, it gave you your life back,
but the effects often fade and additional treatments are almost always necessary.

[Diana (spoken)]
That wasn't on the form.

[Dr. Madden]
Make up your mind that you'll try again
Make up your mind there are moments of light
But one things that's sure is that there is no cure
But that doesn't mean we don't fight.
...

[Diana (spoken)]
I've had this lovely and fascinating relationship with you doctors and your treatments for 16 years but now I think I'm done.

[Dr. Madden (spoken)]
Diana, medicine isn't perfect, but it's what we have.

[Diana (spoken)]
Goodbye Dr. Madden.

Maybe
Next to Normal (2008)

[Diana]
Maybe I've lost it at last
Maybe my last lucid moment has past
I'm dancing with death, I suppose.
But really, who knows?
Could be I'm crazy to go.
They say you should stay with the devil you know
But when life needs a change
And the one devil won't
You fight to the devil you don't
...
[Natalie]
It's so lovely that you're sharing
No, really, I'm all ears
But where has all this caring been
For sixteen years
For all those years I'd pray that
You'd go away for good
Half the ti me afraid that you really would
When I thought you might be dying
I cried for all we've never be
But there'll be no more crying
Not for me
...
[Diana]
We tried to give you a normal life. I realise now, I have no clue what that is.

[Natalie]
I don't need a life that's normal
That's way too far away
But something next to normal
Would be okay
Yeah, something next to normal
That's the thing I'd like to try
Close enough to normal To get by

[Diana]
We'll get by

[Natalie]
We'll get by

Hey 3/ Perfect For You (Reprise)

[Natalie]
Am I crazy?
I might end up crazy

[Henry]
I'll be here for you

[Natalie]
You say that right here
But then give it a year
Or 10 years or a life
And I could end up your wife
Sitting staring at walls
Throwing shit down the stairs
Freaking out at the store
Running nude down the street
Bleeding out in the bath

[Henry]
Perfect for you
I will be perfect for you
So you could go crazy
Or I could go crazy, it's true
Sometimes life isn't sane
But crazy I know I can do
Cause crazy is perfect
And fucked up is perfect
So I will be perfect

[Natalie]
Perfect

[Both]
Perfect for you

Next to Normal is a lesser known musical, but I believe it should be required background music on any psychiatric ward (okay maybe not that far but I think it needs to get wider play for those with mental illness).  When going through ECT having the knowledge that my memory loss wasn't a character fault but was experienced by Diana as well was very comforting.  ECT doesn't make it into many media forms without it being used as a torture technique or as a historical representation and not showing the changes and improvements that have been made since the late 1980's.  I don't believe that it is over used, or that doctors are purposely hiding the possibility of side effects.  Every brain is different so every person will respond differently.  Seeing (feeling) the interactions between the family members and especially between Diana and Natalie has helped me see how much my illness has effected those around me.  Music is such a powerful media that it can express (especially for us who struggle to express) our thoughts, fears and feelings.  So, once again if this has intrigued anyone seek out the full musical it is available on Apple Music, YouTube, and Pandora (maybe others).