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.
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.
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.
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.
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
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
There are literally billions of people on this earth
What does it matter if there is one less?
He wondered to himself
As he left the office, late one rainy night
A car raced by him, splashing him
Making him shiver now that he was drenched in muddy rain water
He thought a split second too late
How he could have easily jumped in front of that asshole’s car
Ruining that fucker’s night
And effectively ending his own
In this case,
Two strangers and one pretentious oversized car
He rolled his eyes
Not for the first time that day
What was it with him lately?
He was becoming the grumpiest 28 year old man that ever existed
He remembered what Catherine had said to him before she ended things with him two weeks ago
‘You’re miserable. Miserable with life, with me and with yourself.’
He rolled his eyes again
He had to stop doing that
It’s become too reflexive
She was right though
He was miserable
He felt so…dissatisfied with everything
His job, his friends and most definitely with her
He just been going through the motions with her
Really, he was surprised she hasn’t broken up with him months before
But he knew why she had stayed
They looked good together
On paper and on the outside looking in
They looked like the it couple
She with her long red hair and perfectly fake smile
And him with his dark good looks and shadowed eyes
She had loved how her girlfriends envied their relationship
She got off on the times they had told her how jealous they were that she had found ‘someone like him’
As if he was a real catch
This time he stopped himself from rolling his eyes
At first he didn’t mind the way she would play up their relationship in front of others
Hell, it was easy to just smile and keep his hand on her waist
Even standing beside her
And he couldn’t wait until he dropped her off at home
Making excuses why he couldn’t stay the night
She’d started dropping hints that she was unhappy
Complaining that he never took her anywhere
Or that he acted too indifferent around her friends
Through it all
He couldn’t bring himself to bother to care even the slightest
So when she’d told him she was through with him being miserable
He cut the call, tossed his cell and slept like a baby that night
He wasn’t miserable per say
And yet here he was
Thinking of jumping in front of some asshole’s car
Out of equal parts spite and desperation
He went home that night and drank too much whiskey and passed out in front of the television
He woke up with a brutal hangover that would surely stick with him all day
After showering and forcing down a few Tylenol
He dressed and headed to the subway
Hoping it would be a quiet morning and that when he made it to work
He could just hide out in his office
The subway platform was packed and he felt that same old irritability starting to infiltrate every part of his whiskey soaked brain
The alcohol from last night hadn’t done much to put a damper on his chronically bad mood
He rolled his eyes
The subway sped into the station
Everyone surged forward
Social etiquette failed to exist in these self serving moments
He hung back
Not caring if he made it onto this train
Maybe he could wait for the next train
Maybe he’d jump in front of it
But there was room
So he moved forward and walked and without paying much attention
He sat in the first available seat and let his head fall back
A few stops later
He felt someone’s eyes on him
He could tell without even opening his own
He took a deep breath, opened his eyes and looked up
And locked eyes with a woman standing directly front of him
He felt a jolt through his entire body
Effectively waking him up
How had he missed her?
While she stared at him
He looked her over
Seeing her black clothing in stark contrast to her pale skin
Her ripped up jeans that led to old school sneakers that looked like they were well worn
He made his way back up and this time the shock of her electric blue hair caught his attention
It was so bright and stood out in the sea of conformity around them
He looked back at her face
And saw that she was looking at him with a strange expression on her face
He should have looked away
It was the polite thing to do
But then a whisper of a tattoo design peaked out on her outstretched arm that held the pole in front of her
Her jacket having ridden up her arm
He couldn’t tell what it was from the little he saw
But could tell it wrapped around her wrist and extended up into her jacket sleeve
He looked back at her
Her face filled with concern
He looked away from her and down at his phone in his hands
What was that look for?
Trying to focus on the note he was trying to type out on his phone
Struggling to find words that would explain everything without blaming anyone
He wouldn’t look up
He must have misread the expression on her face
He would not look up
Most people looked at him with intrigue
He looked up
And she was looking down at him
She still had that concerned look on her face
As if she knew something
Her bright eyes looked directly into his eyes
Searching for something
She shifted her eyes but looked back quickly
She opened her mouth to speak
And in a voice as captivating as her blue blue hair
‘It’s gonna get better you know. One day, it won’t feel like this.’
What the fuck?
He struggled to find something to say
‘You’re gonna be okay’
What was she talking about?
As they entered a tunnel, the lights cut out
It was pitch black
He started breathing shallowly
He felt pressure on his hand
Then a graze of his cheek
It felt cool like a salve on his overheated skin
He knew it was her
He could feel the intensity of her words touching him
Seeping inside his skin
Past the bone and muscle
And into his heart
Which started beating rapidly
It was like it was being kick started after a long period of inactivity
The lights came on suddenly
The subway ground to a halt
The doors opened
And she was gone
He stared down at his phone
The note application still open
All the words he’d written
All the apologies
All the explanations
All that was left were 6 little words
That he hadn’t typed
‘I made it. So will you.’
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.’
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
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
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
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
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
It’s the opposite of valid
An idea or thought that is sensible
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
And I thought to myself
Not for the first time
Just how much
Health really is wasted on the healthy
Since they don’t have a fucking clue
How lucky they are
I wish I could say that I’m not jealous
I’m happy for them
But those would be nothing but lies wrapped in nice sentiments
The truth is
I’m jealous of every person whose body isn’t attacking itself
I’m bitter towards every person who doesn’t know the fear of not knowing if tomorrow they’ll wake up paralyzed or blind
I’m resentful of everyone who doesn’t appreciate their healthy mind and bodies
I fall asleep sometimes
With the unfairness of it all sitting like a weight on my chest
Making my breathing laboured and coming out more like puffs of fire
I wake up some mornings and before I open my eyes
I wonder if this is the day I won’t be able to see anything
I kick myself for not appreciating the last things I saw before going to bed
For not staying awake longer
Taking in as much as my eyes would let me
I can’t pretend there aren’t moments where these thoughts don’t consume me
Sometimes the moments are fleeting
But I catch myself before I get swept away
And sometimes it’s too damn late for me to realize a moment has stretched into a day
And a day into a week
And the only way I’ve noticed how consumed I’ve become
Is by looking at a calendar
And not being able to remember anything distinct about all of the days gone by
But I know they must have passed because I’ve drawn a big red X on them
Like I’m marking them off
Counting them down
Checking them off
I’m still not sure
Maybe just to prove I was here
So I did something today
That I hadn’t been able to previously accomplish
I finished an audiobook
No big deal there
That happens very frequently
I should clarify
I finished an audiobook where the main male character has Multiple Sclerosis
I know it might not seem monumental to you
There was no forewarning about his diagnosis in the description of the book
Because in all likelihood
I wouldn’t have given it a listen
I hate to admit that in the past I’d been unable to continue to listen when I got to the point in the story where a character was revealed to have MS
In that instance
I stopped cold turkey
Right then and there
This time around
I had two hours left in an eight hour book
It wouldn’t have been strange for me to not finish listening
There have been many times
Where the romance audiobook character said the word ‘gosh’ too many times
And with only minutes left
I just couldn’t do it and ended that listen lightening fast
Anyway this time
I got to the part where it is revealed the character has MS
I paused the audiobook for a minute
I called Joey to come into the room
Explained the situation
Made him listen to the line
I did something unlike myself
I kept listening
There may have been some tears
The female characters
Not my own
A little my own
The story kept going
It didn’t end there
With him in a hospital
Talking medical shit with a doctor
The story continued for two hours
Two hours where I continued to listen
I could have stopped
Found something else
And yet I listened to the whole story
Sometimes with tears
I kept going
I listened until the very last second
I listened until the credits rolled and the audio went silent
I can’t think of anything more fucking poignant