The Only Way Out Is Through

It’s been something like two and a half weeks since I lost my mind
Countless days and nights that I haven’t felt like myself
That my skin hasn’t felt like my own
Two and a half weeks since I went to two different emergency rooms
Two and a half weeks since I spent the night at a crisis centre
Two and a half weeks since I first lost my appetite
Two and a half weeks since I first started having irrational and obsessive thoughts on top of multiple panic attacks per day
Two and a half weeks since I became scared to be alone
Scared in my own home
Scared of my own mind
It’s been a week and a day since I came to stay with my parents
It’s been a week and a day and I’ve only been comfortable being left alone once for a short period
It’s been a week and a half since I told my neuro psychiatrist what I was experiencing
It’s been a week and a half since I went back to my old full dose of Paxil
It’s been a week and a half of 3-4 Ativan per day
It’s been a week and a half of nausea, grogginess, headaches, crying fits and having my appetite return
It’s been a week and a day since I haven’t went to bed in my own home
Where I haven’t seen Joey either right before bed or as soon as I wake in the morning
A week and a day since I last napped with my dogs
4 days until I call my neuro psychiatrist to let him know how I’m doing
5 days until I start paying for Cognitive Behavioural Therapy
Unknown days until I return home
Unknown days until I don’t wake up afraid of a day filled with panic attacks
Unknown days until I don’t fall asleep fearing another day of panic attacks
Zero days that I haven’t wished for a different life
Zero days that I felt like I had the strength, courage and determination to get through this
Today though…is a special day
It’s the day where I wrote
Today is the day that I got my voice back


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‘There Are Moments That Mark Your Life. Moments When You Realize Nothing Will Ever Be The Same. And Time Is Divided Into Two Parts – Before This and After This.’ Nicholas Kazan (Fallen)

I had an a-ha moment today in my support group. We were on the first step which is:
1. We admitted to ourselves that we are powerless over our disease. That our lives had become unmanageable.
I got to go last…which meant I got to listen to 3 MS veterans. All having been diagnosed more than 15 years ago.
One spoke of feeling comfortable in being alone on Xmas day.
Someone else spoke of being okay with their sometimes self-imposed isolation. Another spoke of being aware of their limitations, without being self-deprecating.
I sat back and listened.
One in a wheelchair.
One in a scooter.
One with cognitive symptoms.
And I felt envious.
Of them.
Me,with my mostly mobile body.
Me, with my mostly cognitive functioning brain.
I felt jealous of each of them.
I felt jealous of the comfort and grace each of them had come to possess upon accepting their illness.
I sat there and reflected over the last 6 years since diagnosis.
The ups and so so many downs.
The relapses.
The symptoms.
The steroids.
Treatments.
Injections.
Sleepless nights.
Crying fits.
Raging fits.
Anxiety.
So much fucking anxiety.
All of it, having led me to this moment.
Waiting for my turn to talk in a 12 step support group.
Their eyes looked to me.
My turn.
I looked around the table.
Less than a year ago, they were nothing more than three strangers. People I would have passed on the street, without a second glance.
Now we share this inexplicable bond.
This illness we all have.
Referred to often as the ‘snowflake’ disease, since symptoms vary so much from person to person.
These three people who now know more about my feelings and thoughts than most of the people in my more immediate circle. These strangers not so different from this lifelong outsider, after all.
I told them I thought that I had accepted having MS.
6 years ago. I heard the words coming out of my Doctor’s mouth and thought to myself ‘okay….so now I have MS.’
I thought that was enough.
I thought that meant I had accepted it.
But it wasn’t until that very minute that I realized, I would never be able to accept MS, until I had also accepted the negative impact its had on my life.
That meant accepting the change in my job status.
The permanent damage to my eyes.
The toll all of it has taken on my already fragile mental state.
Taking all of that in…and still being able to say that while I won’t succumb to it, I have come to terms with having MS in my life. That I’m OKAY with it.
I’m not there…
Not even close.
But I found hope in looking around me.
Which for someone as chronically hopeless as myself, is a fucking lifeline.

‘When The Soul Suffers Too Much, It Develops A Taste For Misfortune.’ -Albert Camus

On a shitty day, I’ll gamble with myself

‘ If even one good thing happens to me today, I will be okay.’

At first glance it seems the odds are stacked in my favour

Only I’m not a very good gambler

And I find myself on the losing end of that bet more often than I’d care to admit

One

Good

Thing

It doesn’t seem like much

Nor does it seem like something that would be hard to come by

But when you’ve stopped working

Your world becomes frighteningly small

Leaving you with less possibilities for something

And there’s only so many times you can count your dogs something good that happened

Without starting to feel like you’re lying to yourself

Maybe it’s the combination of illnesses that I carry

That make it harder and harder to be on the winning side of that bet

Maybe it’s luck

I don’t know

I think I’m one of those people that can lament that if it weren’t for bad luck, they’d have none at all

So I like calling it a bet or a gamble

Because when you’re calling it hope

And you lose….

It’s just so much more disheartening

‘I Regret Those Times When I’ve Chosen The Dark Side.’ -Jessica Lange

I always thought I was a ‘no regrets’ kind of person

Did the things I wanted to

Things I loved

With minimal regrets

I told myself that’s why I got tattoos

Why sometimes I could be impulsive

It now seems so childish to think you could live an entire life without regrets

It’s an impossibility

Sure maybe you took that trip you wanted

Or you told that person you loved them

But we each carry some type of regret over something we wish we could have done

Or just done differently

Sometimes it doesn’t take ones deathbed to look back over your life

Sometimes all it takes is a really restless sleepless night

And suddenly regrets pop up faster than you can search for the sleeping pills

So you’re stuck

Staring into space and reviewing 37 years of a life you’d thought you had lived regret-free

I wish I could wax poetic like Sinatra did

About admitting to having had regrets and yet having had too few to even mention

But it’s nearing 4 am and I fear I won’t be able to get some rest until I lay them out there

So here are some (in no particular order)

Regrets:

◦ Not getting my degree when I was younger

◦ Wasting time with forgettable people

◦ Not spending enough time with memorable people

◦ Not reading a book in every spare minute I had

◦ Giving up my job (this one haunts me)

◦ Selling a home that I felt instantly connected to

◦ Not telling off a former boss (or two)

◦ Some coworkers too

◦ Not speaking my mind when I knew I should have

◦ Declining certain invitations from the aforementioned memorable people

◦ Allowing some people to make me feel less than

◦ Every time I felt embarrassed for not knowing something

◦ Not showing or telling some people how much I care(d)

◦ All the time I spent wishing instead of doing

◦ Not relishing the enjoyment of watching a movie or tv show

◦ Not relishing the enjoyment of reading a book

◦ Not relishing every single peaceful moment

There are more

Of course

I’m sure I’ll add new ones to this list as well

Although I’d much rather say from this moment on, there would be none

But that would be a lie

And I’m too tired to pretend with myself

——-

I did fall asleep about two hours after writing this but it didn’t give me the relief I was craving

Instead I laid in bed crying about my job

Feeling sorry for myself

Feeling sorry for Joey

Feeling sorry that there are kids out there that I just know I can help

But that I won’t be able to

And that last one

Just fucking guts me

My tears now feel hot and painful as they roll down my face

My chest and stomach hurt

And I’m overcome with feelings of guilt, sorrow and that same fucking regrets

So it seems that exorcising your regrets isn’t the same as having none in the first place

Who knew? 😒

‘In The Depth of Winter, I Learned That There Was In Me An Invincible Summer’ Albert Camus

You know how every winter when it gets below zero

You think to yourself

‘This is the problem with Canadian winters, it just drops and you don’t have time to get accustomed to the cold temperatures.’

Well

That’s kinda like having MS

In one day

In one minute

In one nanosecond

You go from being just another random person

To be a person with Multiple Sclerosis

Maybe you lose functioning of your right hand

Or your lower half goes numb

Or you’re like me

And one day there’s a blurred spot in your vision

That no amount of lens cleaning

Will get rid of

The fucked up part

Is that with relapse remitting Multiple Sclerosis

Every relapse is kinda like reliving that first one all over again

Yeah sure you have your symptoms

But you’ve grown used to them

You’ve figured out a routine

A method of getting shit done

And then bang

Boom

Pow

Out of nowhere

Your leg stops working and you fall

Or your speech gets slurred and you sound intoxicated

Or you’re like me and you can’t stand to have your eyes open for another fucking second

So yeah

MS is kinda like that

And every time I think I’ve gotten the right equipment

And my coat is warm enough

And my snow tires are on

Then it changes in a flash

And now I’m standing outside in a T-shirt and it’s minus 30 Celsius weather

And I don’t remember a time when I ever felt warm enough

And I can’t remember what the sun’s gaze feels like directly on my face

And I certainly can’t recall what I was like before I turned into ice and shattered into a million pieces

Or who I was before MS blew into my life like a fucking snowstorm on steroids

…..

‘In 3 Words I Can Sum Up Everything I’ve Learned About Life: It Goes On.’ R. Frost

Multiple Sclerosis

I didn’t even know what it was until after I was diagnosed

I had heard about it

Montell Jordan

How sad

And all that

But I had no clue what it actually was

It’s amazing what you can learn when you have no choice

Multiple Sclerosis is an autoimmune disease of the central nervous system

The central nervous system is comprised of the brain and spinal cord

An autoimmune disease is when your immune system mistakenly attacks itself

There is no definitive answer on why someone’s immune system would turn on itself

Nor is there a definitive answer as to what causes MS

There is obviously speculation to both

Some people speculate that the environment or genetics could be the cause

MS attacks myelin

Myelin is the protective coating of nerves which causes inflammation and can be damaged

Those damaged areas are lesions on the brain or spinal cord

Myelin is responsible for the transmission of nerve impulses

Without myelin doing it’s job

Communication is damaged between nerve cells

Therefore the body doesn’t get instructions to perform necessary functions like walking or seeing

It sounds so complicated and scientific on paper

But all it really means

Is that your body stops working in the ways it’s supposed to

It’s stops listening to basic control functions that it once took for granted and did without thought

MS triggers a state of uncertainty

In being diagnosed

You have an answer as to what is happening

But you have no clue as to why it is happening

Nor do you have any idea as to what to expect later today, tomorrow or in the far off future

You hear stories and see campaigns which declare Canada as having one of the highest rates of MS in the world

But you have no knowledge as to why that it is

You are constantly told that the brightest and most successful people are looking for cures, treatments and answers

But it has no bearing on your daily life

What you do learn very quickly

And understand with absolute certainty

Is that your life will never be the same again

Your life goes from reading and working and going out and travelling

To daily injections, sharp eye pain, bone weary fatigue and a total lack of outside understanding

A lifetime of not knowing

In the blink of an eye

Angela, I’m sorry…you have MS

And the words that were already printed in the book of your life

Disappear and all that’s left are three little words

Life

Goes

On

And I can’t think of another sentence that conjures up feelings of hope and complete terror

‘There Was A Time In My Life When I Thought I had Everything…Now I Struggle For Peace.’ Richard Pryor

This morning I read about Richard Pryor and having Multiple Sclerosis

Now I’m pissed off at myself

Because I allowed it to fuck with my head

All day

I kept seeing Richard Pryor towards the end of his life

In a wheelchair

His head sort of lolled forward

Frail and sickly

As if that image wasn’t sad enough

The word ‘invalid’ is stamped onto the backs of my eyelids

That’s how his widow referred to him in an interview after his death

When he became an invalid’

Something like that

That word taunted me all day

Haunted me

Invalid

It’s the opposite of valid

Which means

An idea or thought that is sensible

Or

Something that is important or serious enough that it is worth saying or doing

And that’s what got to me

Because at the end of his ‘battle’ with MS

He was reduced to a word

Irregardless of his willingness to fight and stay positive and be strong and every other trivial motivational one liner people throw at us

He was reduced to a word that literally meant he wasn’t important

That his life didn’t matter

And quite honestly

I cannot think of anything more heartbreaking

Than to be thought of

As nothing more than just inconsequential