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.
I watched Birdbox the other night
It’s a post apocalyptic film that is more unsettling than scary
The characters apparently ‘see’ something that is so troubling, distressing or terrifying that it makes them kill themselves instantaneously
The only way to prevent this
Is to be blindfolded effectively eliminating the chance to ‘see’ anything and that in and of itself is probably the scariest aspect of the film
The characters flee to a safe place which happens to be a home for the blind
Although in the book
This sanctuary is comprised of people who have voluntarily blinded themselves
Which I must say
Is a far creepier ending than the somewhat optimistic one the movie left us with
This movie left me with a lot of thoughts
Two of my fears just happen to be the end of the world and going blind
The former because of a weird experience I had with magic mushrooms when I was something like 16 years old
And the latter
Well that’s pretty self explanatory
What the movie gets so right though
Is capturing the fear of the unknown
Seeing the monsters always takes out some of the scare factor
Leaving them hidden
Allows us, as the watcher to assume the worst
Creating our own separate and distinct versions of the scariest creatures possible
And then this got me thinking about Multiple Sclerosis
Because these days, what doesn’t?
That very reason
The unknown is why people with MS tend to have high rates of anxiety and depression
When we are left to conjure up visions of our futures
We think of worst case scenarios
Each of us coming up with what would be the most horrific outcomes possible
Based on our individualized dreams, aspirations, loves, passions and etc
So how do we move forward?
When there is no way to accurately predict the future
Or even an adequate idea of what you want your future to look like
Even with scientific facts and doctors and MRIs
Several years ago, after a particularly bad period in my life filled with panic attacks
I attended a cognitive behavioural therapy group for panic and anxiety sufferers
One of the techniques they taught us to cope with our panic/anxiety
Was the use of exposures
Another was challenging negative self talk
At the time, I was struggling with my panic attacks occurring when I felt trapped
So I did my exposures in locked closets and on long subway rides through tunnels
I challenged all of the ‘I am going crazy’ and ‘I am a failure’ negative self talk
And replaced it with things like ‘I’m experiencing a panic attack, not going crazy’ and ‘having a panic attack does NOT make me a failure.’
The 14 week program was probably the biggest reason why my anxiety for the next several years was manageable
Until Multiple Sclerosis came along with its lesions and inflamed optic nerves and steroids
And literally upended my entire world
But what if I could use similar techniques to cope with MS?
Like my anxiety, it’s not going away and is a part of who I am
What if I imagined the worst case scenarios of MS? Like really felt and experienced what it would be like
What if I challenged all of the painful thoughts that float in my head so many more times a day than I care to count?
Would it make this more bearable?
What if I accepted the unknown future and made a promise to myself that I could still bitch and hate and moan about it but ultimately roll with it and move on?
What if I accepted that I can’t finish my Bachelor of Social Work?
What if I accepted that I probably won’t be able to work full time?
What if I accepted that I will likely continue to struggle with my vision and the pain it brings?
What if I accepted that I will never have the life that I thought I would? That I hoped I would?
Would I then be able to finally end the chapter on all of that?
That chapter which has been left on a permanent ‘to be continued’
Which feels more like a permanent hostage situation
So what if I could erase that last line
And start a new fucking book
With all of my ‘defects’
With all of my broken pieces
With all of my changed dreams
Could I burn that old book filled with my past and all of my hopes for a future that isn’t really mine anymore?
Could I do it and just start over?
Not knowing what the ending will look like
Not knowing what will fill the table of contents
Knowing that a piece of me will burn with it
I have a tattoo I got years ago which reads ‘Tabula Rasa’ which translates into ‘Blank Slate’
I got that because I liked the idea of being able to start over
At any given time in our lives
To stop the story
And start something new
I think it’s been somewhat of a motto for me
When I didn’t like school or work
I called it
And started anew
So maybe that’s where I’ll start this new year with
My tabula rasa
My slightly broken
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
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)
◦ 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
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? 😒
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
I didn’t even know what it was until after I was diagnosed
I had heard about it
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
And I can’t think of another sentence that conjures up feelings of hope and complete terror