The unfiltered musings of a youth worker, MS warrior, wanna-be writer and chronically misunderstood misfit
It is both heartwarming and difficult to look at these pictures of me.
I can see innocence and hope and so much zest for life in her expressive eyes. When I look in my eyes now, 35 plus years later, I see sadness that changed who I was to become.
I don’t know if that funny little girl with the big doe eyes is still around…but to her..I’m sorry…I wish I had done better
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
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.
I’ve hated you since I started experiencing panic attacks
No
Even before that
I hated you when I saw what you did to my father
How merciless you were
I hated how vulnerable you made him
I hated how scared you made me feel
When I started having my own panic attacks
I wasn’t unsure or surprised by your arrival
I was just upset
I was angry that I couldn’t fend you off
Especially after having seen first hand the damage you caused
I was frustrated
And you grew stronger
I had my very first panic attack waiting to board a plane
That sense of helplessness and feeling of being trapped
Allowed you to flourish
And you grew stronger
I got more frustrated
I became depressed
At what I perceived as my failure
Failure of what?
Outrun you of course
Break the pattern
And you grew stronger
Throughout the years and the numerous times you showed up
You stole bits and pieces from me
From my identity
From the experiences I stopped myself from having
I can’t count how many things I’ve missed out on because I was just too damn scared of you
And you grew stronger
I didn’t know that it was me who fed you
I didn’t know it was me that built you up
I vacillated between fighting you and being so terrified of you that I hid behind medications and isolation
I’m bone tired of fighting
I’m drained of the energy it takes to be afraid
I’ve been living with you my entire life in one form of another
You haven’t killed me
Yet
I was hurt because of you
The people around me were hurt because of you
But it was I, who allowed that to happen
Not you
You were never strong
It was always me that was strong
Always fighting against you
And
Hiding when self preservation took over
I used so much energy trying to not let you win
That I didn’t realize
I could end this epic battle
By waving a white flag
I spent so much time hating you
When I should have been understanding you
Because you were struggling like me
You were the outcome of the bad day, bad week, bad month that I’d had
You were what my body needed to expel to move on
I was too consumed by the symptoms you gave me
The shortness of breath, the stomach cramps, the heart palpitations, the depersonalization
To see that those symptoms came up because I dreaded your arrival
I’m sorry that I didn’t see you for what you really are
You’re me
And we’re in this together
So
If my body and mind feel like they need to have a panic attack…
Well I guess it’s ok
We will get through this
It’ll be uncomfortable
But it will pass
Just like it always has
And I promise to try not to be so hard on you
If you promise to do the same
Who knows?
Maybe one day
I’ll even write a poem about how grateful I am for your existence
I’d tell you not to hold your breath
But we both know I’d be lying
So I’ll just say this
I get it, Panic Disorder
I really do
I’m only sorry that it’s taken me so long
You’re a thief
Always taking
Never giving
You’re deceitful
And dishonest
You’re a master manipulator
And you thrive on the fear you create
You’re a jealous thief
Stealing away happiness
And love
Even robbing old memories
Making them turn sour
You’re a callous thief
Full of pain you can’t wait to inflict on others
Desperate to infiltrate every last happy place
You’re a cruel thief
Taking away the innocence of childhoods
And destroying what should be carefree teenage years
Annihilating adulthood with haphazardly thrown bombs
You’re a cowardly thief
Preying on people in their weakest moments
Victimizing the same people over and over again
Taunting them repeatedly
You are words that haunt
You are living nightmares that plague
You’ve stolen so much
That all we can do is pull at our hair and cry in frustration
Shouting that turns into whispered pleas
To just leave us alone
Wondering what we need to do
What more we need to sacrifice
To satisfy you
Spending entire lives
Serving life sentences
Paying penance for what we can’t control
All because of you
You’re nothing but a thief…
It’s an exciting time of year
It’s back to school time for a lot of people
Kids going back to school
Teachers and support staff heading back to work
A time for newness
Opportunity
Change
And me
Well I’m still home
Still
I don’t think I like that word anymore
It has such negative connotations
Like something is dragging on
And I guess this is
It’s sort of like living in purgatory
In between two worlds
….
I had to stop writing
I can’t seem to think about the kids or work without feeling so sad
The kind of sad where hot tears escape your eyes
Where it feels like you just picked a scab
And it’s red and raw and bleeding all over again
But it hurts so much more than the initial cut
Ugh
This isn’t where I want to still be
Still
Again that fucking word
Haunting me
Reminding me
I want to look back at my work memories fondly
Not with this gaping hole in my heart
Intellectually I know that I needed this time off
That I still do
There was and is a lot going on
That doesn’t
However
Stop me from wishing it didn’t have to be this way
I miss the kids I worked with
I miss the ones I haven’t even had the opportunity to have met yet
I miss getting to know them
Learning their stories
I miss finding ways to help them become better, stronger versions of themselves
It’s not entirely altruistic though
I selfishly miss seeing myself through their young admiring eyes
Looking at me like I held all the secrets to life
Looking at me with hope
Hope
I never managed to have much use of it
For myself
But always
Always managed to find even the smallest droplet for them
…
In this purgatory I find myself stuck in
I don’t belong in the work world
I don’t belong in the sick world
I don’t belong with the hopeful
I don’t belong with non hopefuls
I’m stuck lingering in between all of these worlds
With hope seeping out of my open wounds
Without a hope of saving a drop
But for those special kids in my heart
I’ll find a way
To save and keep a droplet of hope locked up tight
Just in case you need it…
I feel like I should apologize for being MIA lately
But I’m not really sorry
Because it’s for a good reason
It’s for me
Last Wednesday I dropped my Paxil dosage from 40mg to 30mg
I won’t pretend I was totally cool with it
I had a lot of reservations
But I also really wanted to do it
There were some shitty days obviously
Two days when my anxiety spiked to an uncomfortable level and I needed to take more Ativan
Several days where I had dizzy spells that came and went
But I survived
I can tell the following things helped:
Writing affirmations daily
Trying to stay busy
Doing a lot of introspection over the root of my anxiety
Now today I went down to 20mg
Last nite I was really starting to psych myself out of doing this
I kept thinking ‘woah 20 is a big drop from 40’
Then J. reminded me that I was going from 40mg to 20mg
I’ve been on 30mg and am stable there
Now I’m dropping 10mg again
Which I successfully did last week
I needed to hear that
It helped ease my fear
I made him write it out so I could print it
I’ve already reread it a few times
Along with some other affirmations
I need to keep reminding myself that I’ve already dropped 10mg and while unpleasant
I survived it
I’m still safe
I’m still here
And most of all
If I did it once
I CAN most certainly do it again
Changing the narrative helps
Taking the unknown and making it something familiar
Removes the fear
For anyone else out there struggling with anxiety
If I’ve got this
You’ve got this
Hard and uncomfortable as it is
We have what makes people into warriors
I’m going to remember all of the difficult things I’ve been through in my life
I’m scrappy
I am a fighter
Think of everything you’ve survived
I hope you keep fighting
Because I will too
That’s what warriors do
