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
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? 😒
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
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