Fourth try’s a charm.
Thank you to my homegirl Terri for being a blood retrieval Goddess 🙌🏼🙌🏼
Fourth try’s a charm.
Thank you to my homegirl Terri for being a blood retrieval Goddess 🙌🏼🙌🏼
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 like spooky things like Halloween in Salem
And even though I don’t really consider myself a ‘believer’, I like going to psychics and mediums
While in Salem for Halloween and on a boat cruise, I had a free reading done
I sat down and after shaking hands and making introductions
He motioned to a pin on my jacket of a broken heart stitched together
He said it represented me well
I’d been broken hearted
Not by love in the traditional sense
But by the world
I laughed a little nervously and my curiosity was piqued
It was a short reading and I can’t stop thinking about something he said during it
He told me that I always felt like I didn’t fit in
He said that maybe that was okay though
Because some people aren’t meant to fit in
Some people are meant to make a difference
He said that in my work I was trying to make a difference for people
That I’m a healer and a powerful empath
I can’t stop tracing those words in my mind
I continue to think about it and where that leaves me
Which is apparently on long term disability (after finally being accepted a month ago)
In that time period, I feel like I should be doing something
Only I don’t know what
This isn’t new though
I’ve never been someone who had a clear path or knew what they wanted to do from a young age
I went to several different schools and tried on different hats
The only one that fit reasonably well was the last one I wore
Working with youth
I knew even though
That it wasn’t the perfect fit
The school restrictions, the politics, the employer
But it was so close
And then in the blink of an eye
Like things in my life so often do
It didn’t feel right anymore
My direction was blurred
Just like my vision
I only knew I couldn’t go on like that
And it had nothing to do with the youth
It had everything to do with how others made me feel like I wasn’t doing good enough
My pride was so deeply wounded
That I can feel it
Like rubbing salt on fresh wounds
Just thinking about my job, those kids, that work, those people, that job
And I feel it all over again
Every single burn
All the pain
Pride is funny like that
It’s with you during some of your happiest moments and accomplishments
It can carry you through some of the toughest times
And then bury you just as easily
Some days my damaged eyes feel as weary as my burdened soul
Some days it feels like I carry the world on shoulders that are tensed with anxious thinking
Some days the world feels as chaotic and unpredictable as the disease discarding lesions on my brain
Some days I feel so jittery that my nerves feel like they’re fraying and uncovering more than just damaged myelin
Some nights I lay awake not able to sleep even though my days are consumed by an overwhelming fatigue
Some nights it feels like electricity is coursing through my limbs and extremities
Some nights I feel like not waking up in the morning still wouldn’t be enough to get rid of all that’s wrong
Sometimes there are moments when I think that even a lifetime isn’t enough time
Time to shed all the broken and irreparable pieces of me
Time to start over
Time to begin again
Or maybe a lifetime is all it takes
To be gifted a new body and mind
And leave all that affliction behind
In the past
Where it belongs
Buried and covered
In someone else’s grave
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 am a fighter
Think of everything you’ve survived
I hope you keep fighting
Because I will too
That’s what warriors do
Once upon a time I saw a medium
Who told me that someone very close to me has been living their entire life with one foot in the grave
I thought to myself then as I still do now
That it was the most perfect way to describe this person
As a loved one of this person
It’s frustrating and maddening that they can’t shake it off
And see the love around them
Now as a person who can relate all too well
It’s frustrating for a different reason
The people around don’t understand
They don’t understand why that one foot stays firmly planted in the grave
They don’t see how hard it is to keep the other foot out of that fucking grave
They don’t get the difficulty making it through one day is, one function, one more appointment
I wish they knew…
It’s like constantly treading water to keep my head above it
My limbs feel exhausted
My brain keeps wondering when it’s an acceptable time to admit defeat and give up
My heart feels hollow
There’s a bone weary tiredness that permeates throughout every cell in my body and into my brain
I can go to sleep sometimes and sleep for hours
Wake up and feel like it’s never enough
Or I can lie in bed staring at the ceiling
Thinking that if I wished hard enough
I could make this all go away
I’m 36 years old
I can’t even remember a time before this
That’s fucked up
Surely I know there was one
I just can’t for the life of me picture myself in it
The present is like living in a post apocalyptic world
Where everything is bleak, tarnished and there is no hope
I can say for certain
This is not an enjoyable place to be
Living this way is not only exhausting
It’s also like having a flu you can’t shake off
No matter how many medications you’ve tried and doctors you’ve seen
Yet, even with the desire to feel better
The flu rages on
When you can’t remember a before
And you can’t see a future
The world becomes very narrow
It becomes the perfect setting for a dystopian society in a novel
Of which, one may want to read about
But no one wants to actually live in
It feels like I’ve become the main character in this novel
Searching for a way out
Up against opponents like doctors, employers, insurers
Trying to find allies
Unsure of who you can really trust
Like every good story
There’s a time constraint
I start to fear that I’m running out of time
I’ve read so many books where someone who needs help
Gets saved by a hero
In some form
I know that my story is different
There is no one coming to save the day
It’s just me
Still trying to find some way to fully live in this world
With both my feet firmly planted on the ground beneath me
Sitting by the water
He takes out his notebook and a pen
He starts addressing the letter
‘Dear Mom and Dad’
Staring out at the sea
Reminded of all the times he had sat in this very spot before
But never really seeing
Today is different
Today he is thinking of his parents
Thinking of what to write in a letter that will only be received after he’s gone
Thinking of what, if anything, will bring comfort to his parents
He doesn’t want to think about the sadness they might feel
He prefers to think of their future and how happy he thinks they’ll be without worrying about him all the time
Should he write that, he ponders
That sounds like he’s doing this because of them
And he’s not
He’s never done anything so much for himself before
He starts again
‘Dear Mom and Dad,
I love you both
I’m sorry for any grief this might cause you
But I’m doing this for me
I can’t stand it anymore
I hope one day you can understand that.’
He stops again
He rereads his words
The words sound so hollow
It all seems so pitiful
That’s not what he wants to convey
This isn’t a sad ending
He needed this, he thinks
Surely they have seen that
Maybe there’s no way to write that out
Maybe there’s only a way to feel it
If only he could bottle up an emotion and attach it to his letter
He feels frustrated
Fuck this isn’t what he wanted today to be about
This day was supposed to be a happy day
He shouldn’t have waited until today to write this
This is good really
The end of a miserable life
He tears up the letter
He tries again
‘Dear Mom and Dad,
I’m doing this for me. A new beginning.
He reads it over several times
It’s as good as its gonna get
He doesn’t have a lot of time left
He goes back to his lonely apartment
Filled with stuff he has no use for anymore
He wonders if he ever really enjoyed any of it
He doesn’t care if thieves get to it
He finds an envelope and puts his parents names on it
He had made plans with his parents for tomorrow
They are going to pass by
They’ll knock until they realize the door is unlocked
They’ll wander in
Call his name
They’ll see all of his things scattered around
Remnants of a life he never really excelled at
Leftover pieces of a life that he could never really call his own
Things he won’t need anymore
The letter will be on the table
They can’t miss it
He wonders if they will figure it out before reading the letter
He hopes in someway they saw this coming
They had to
It’s been a long time coming
He doesn’t really care to say his goodbyes to anyone else
He just wants to be gone
He goes into his bedroom
There is a small bag in his closet
That he bought especially for this momentous occasion
He feels positively electric
His hands are shaking
He unzips it
Making sure everything he needs is still there
Even though he has checked and rechecked a million times
He hasn’t slept in a few days
Too full of anticipation for this day
He takes a seat on his bed
Thinking about this last year
He’s exhausted and giddy at the same time
That’s the only time he’s ever used that word to apply to himself
He is so ready to take this leap
He gets up
Grabs his bag
Walks to the front door
He won’t need his keys where he’s going
He turns back
One last look
He feels nothing but relief
He shuts off the lights
Closing the door behind him
He takes a big breath
This isn’t an ending
It’s his new beginning
One foot in front of the other
Not longer just about walking away from an expired life
But towards a new one
Just waiting to be found
‘It’s not what you look at that matters, it’s what you see.’