MS and the life I had

One day I would like to write about happy things

Rainbows and unicorns aren’t in my forecast though

I was called into a meeting by my employer to discuss my attendance and how it may be impacting the program

I felt a sense of dread

Who doesn’t when they get emails like those?

The meeting included my supervisor, her supervisor and HR who joined via phone bc she was sick. The irony wasn’t lost on me

Pleasantries exchanged

I felt the mood shift

HR stated that the school board had expressed concern over the attendance and how it is negatively impacting the class

I literally felt my haunches go up

Do I take days off? Yes

Have I noticed an impact on my youth?

No

And to be perfectly honest

If I had noticed such an impact

I’d of done something

Bc despite how HR made me feel by repetitively asking me to be honest with them

I have been

To a fault

I notify my supervisor and coworkers immediately

I tell them the truth

I don’t feel well

I’m tired

I have a sinus infection

Blah blah

HR says they want to support me

But can’t if I’m not being honest

I felt my head shake in puzzlement

She spoke words like systemic and pattern of absences

And I felt like I was on trial for something far greater

She asked me to commit to five days a week of attendance

I may have guffawed

I have MS I thought to myself

I recently underwent treatment to kill off my immune system

How the fuck do you expect me to commit to that?

Can anyone? Even a non-chronically ill person?

She said then I should speak to my family doctor to discuss my capabilities

Of which I’ve never been uncertain of

She made me uncertain

She said to get a letter

Absolving me of my absenteeism or giving me a stamp of healthy approval

I laughed when she said a month was too long to get an appointment with my doctor

She doubles as HR and a medical receptionist

In my bewildered state

I asked how the program had been negatively impacted

She said the relationship building was affected

I felt cold

I’m not certain of much

But my ability to engage the youth in the program

I’ve got that

The call with HR ended

I was left in a room with supervisor and management

I felt so fucking small

They asked if I had questions

I asked about the relationship building

They said it wasn’t about my relationship with the kids

But rather the one between the school board and agency

You know

The shit I don’t care about

I nodded absently

They said it wasn’t personal

They said my ability to engage with clients was top notch bar none

They said there is no question about how good I am with the youth

I hate this part

I cried

Stupidly

Embarrassingly

It hurt from the inside

And I couldn’t stop it

I cried because I felt like I was being held responsible

For something that I have no control over

I didn’t want to have MS

I didn’t want to be anxious and depressed

And generally broken

I cried because I would never want to do anything that would leave any negative impact on any of the youth I work with

Indirectly or not

On a side note

I’ve never had to take a break and stop writing once I’ve begun a post

It’s usually like a stream of consciousness

Flowing from brain to fingers

I’ve stopped once already in writing this last blog

Because the usually cathartic release I get from writing

Hasn’t been found in writing this time

It feels too raw

I need some time

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13 thoughts on “MS and the life I had”

  1. What you are having to deal with at work is such bullshit Angela. It’s bad enough we have to deal with what we have to deal with, but to be made to feel guilty about it is unconscionable. I’m sorry you are having to go through it and hope common sense prevails. Hang in there

    Liked by 1 person

  2. I appreciate you checking out my blog, I decided to check out yours.
    I have severe chronic pain and other disabilities, but I have friends both IRL and social media, who have MS.

    In my case, where a lot of the “activism” I’ve done is rooted in complications from bariatric surgery (which I’m still supportive of), point I’m trying to make, is I have an old friend, she had cancer in her 20’s, bariatric surgery complications in her early 40’s and soon after was diagnosed with her MS, which caused her to have an end of a nursing career, like 3 years ago.

    She said the MS is worse. I am new to your blog, so I will try to catch up on another time, when you get diagnosed, etc, but it did help her to find people for in real life support, such as a MS support group that does get togethers, because the isolation of people who especially aren’t spoonies of any kind and the way worlds get turned upside down, only very few people can relate.

    Just keep seeking out support when you need it, OK? And keep sharing your truths with your blogs, it’s helped me know that everything my particular issues, weren’t gone through in vain, sometimes something you write, means everything and gives hope to people, when they have none, and by a total stranger, somehow being able to relate or maybe identify a feeling they couldn’t yet, changed their life, if not saved it, because it was out there, at the time someone needed it the most.

    Peace…

    Liked by 1 person

    1. Thanks for checking it out. I like what you said that it helps knowing what you’ve gone through wasn’t in vain. I think that’s why I continue to write so honestly. All of this. The pain, the suffering. It’s got to be for something…right??

      Liked by 1 person

      1. I can only empathetically hypothozsize with the type of medical/mh blogging that I do, with an issue so complex as what MS does to a human body, it’s so hard to be at the mercy of a disease and/or syndrome that you have no control over the outcome.

        But it’s hard to see when you’re reaping way more consequences and going through so major life changes all being thrown at you. I can say while my life is so much smaller than I ever could ever imagine it being due to my own unique disability sets, it has purpose now, but I had to change what my expectations were and cede lack of control in all my disability sets to have some kind of peace and purpose.

        Some days are better than others, actually most days really fucking suck, but then I find someone who where everything I went through wasn’t in vain, but by sharing them, prevented them from tragically going through what I ended up going through.

        And in my case that has to be enough. Even though I should’ve been a successful small business owner and single mother of 2, who know in the last 15 years, is a multi-complex “armchair” activist who’s children at the age of 5 and almost 16, 10 years ago, went to live with family when I tried to commit suicide when in medical and mental health crisis.

        I’m now a reclusive blogger who lives a small life, alone, in a tiny affordable apartment, living 4 1/2 blocks if you managed to catch where the last Superbowl that was in the news.

        I live a small pathetic unremarkable life that been much better but much worse, too.

        But I have been able to at least say, when people say, whether I helped them from my blog or helped them when going through medical crises from gastric bypasses, that people do tell me I saved their life, in what I said, how I said it and how often I said it while helping them through something most people who’ve had wls and/or mh challenges, but in my case I ended up needing a gastric bypass reversal almost 7 1/2 years ago, that while I couldn’t change the physical, emotional and cognitive outcome for myself, I could for others and I do.

        Which is fucking extraordinary. In my ordinary life.

        What you’ll end up doing, with such a ruthless condition, and the life you end up living, is still being written. I still have to belive where there’s life, there’s hope, you may not end up living the life you sought after, but you can do extraordinary things even being so tested, just by continuing to share your truths…<3

        Liked by 1 person

      2. I think that’s the hard part for me. Not living the life I wanted. I didn’t fantasize of fame and fortune but I had an idea of what I wanted. Nothing has worked out that way. Your words are so powerful and I want to steal them all. ‘Which is fucking extraordinary. In my ordinary life.’ I don’t know that I can ever be happy with ‘ordinary’. Its just not in the cards

        Like

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