You know what they say?

Fourth try’s a charm.

Thank you to my homegirl Terri for being a blood retrieval Goddess 🙌🏼🙌🏼

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‘Everybody Is A Book Of Blood; Wherever We’re Opened, We’re Red.’ Clive Barker

Today sucked

Hard

I arranged to have one of the Bayshore nurses come to my parents house to do my monthly bloodwork

Since I skipped last month

I was nervous before the day started

But I went with it

The nurse got here

I did the same old pee in the plastic cup song and dance

And then sat in a recliner to get it over with

I told her I usually have it taken from my hand

And that I have anxiety related to it

She was kind and all that

I didn’t have my rubber ball to pump to get the vein ready and blood flowing

But I tried other methods

She got the vein on the first try

I breathed a sigh of a relief

After the initial painful puncture

And then…

No blood

No blood came out

She tried a few times to get it flowing

Nada

She tried a different vein on the same hand

I pumped my hand manically

She got the vein

And still

No blood

I asked her to try my other hand

I was pretty shaky, sweaty and anxious at this point

She inserted the needle

And

No fucking blood

She said

I literally have the needle in your vein and nothing is coming out

We gave up

She recommended I try to go to my regular lab and see my usual homegirl

But of course

Because of my panic and near agoraphobia

I had been trying to avoid that

She left

With her empty vials

Apologies

Used needles

And unfulfilled lab requisition

I was left with my urine sample sitting on my mother’s coffee table in her living room

There wasn’t any point in sending it in without the blood

Three track marks and I’m sure ugly bruises to follow

I pulled my knees up and just started sobbing

I broke my no-crying-for-three-days record

Feeling sorry for myself

Everything is always so damn hard

Nothing seems to come easy

And yet

After all of that

I didn’t have a panic attack

Even pre crisis

A day like today would have likely made me have a panic attack

But today

Through the punctures, the pain, the discomfort, the crumbled hope and the anxiety

I didn’t have a panic attack

That’s my silver lining on this shit-tastic day

‘Oh Angela It’s A Long Time Coming.’ The Lumineers

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

‘There Are Moments That Mark Your Life. Moments When You Realize Nothing Will Ever Be The Same. And Time Is Divided Into Two Parts – Before This and After This.’ Nicholas Kazan (Fallen)

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.

‘When The Soul Suffers Too Much, It Develops A Taste For Misfortune.’ -Albert Camus

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

One

Good

Thing

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 Regret Those Times When I’ve Chosen The Dark Side.’ -Jessica Lange

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)

Regrets:

◦ 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

Of course

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? 😒

‘Weeds Are Flowers Too, Once You Get To Know Them.’ A.A. Milne

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

Two birds

One stone

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

Shit

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

But eventually

Even standing beside her

Grew exhausting

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

Fuck

That hurt

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

Imploringly

She opened her mouth to speak

And in a voice as captivating as her blue blue hair

She said

‘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’

She whispered

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

Beeping loudly

And she was gone

He stared down at his phone

The note application still open

All the words he’d written

Gone

All the apologies

Erased

All the explanations

Deleted

All that was left were 6 little words

That he hadn’t typed

I made it. So will you.