Weapons of mass imperfection

Over the years many people have assumed that the reason I excel as a youth worker is because I’ve retained some of that youthful rebelliousness. However, in truth it has nothing to do with my rebellious adolescence, instead it has everything to do with the fact that like so many of the teenagers I counsel these days, I often felt like I didn’t fit into the world. I felt like I didn’t have a place, or that I just didn’t belong. I have since learned that it was more than simple teenage angst. And I never felt more that way than when I was forced to change my outward appearance. It felt foreign and just plain weird, I felt like the outside just wouldn’t match the inside. I remember my parents telling me that it would be easier if I just changed my outside…that my life would be easier. I remember wanting to have it be easier, but not at the expense of my sense of self.

My high school years were especially tumultuous, as they are for so many others, I didn’t fit the mold of the Catholic all-girls school I went to. I got into unnecessary trouble and was constantly consequenced at the expense of my academics. I feuded with my parents on so many things that seem so trivial now. In public, society was cruel and unrelenting and yet I held a secret power. Unlike so many people who were bullied mercilessly for way more minor differences, my power was in my inability to feel intimidated by the taunts and mean words. It was the inner strength that allowed me to carry that power with me in all the different settings. And instead of submitting to the people who mocked me for my differences, I fucking fought back. I wore my differences like armor. Through my heavily lined eyes, I could see through all the bullshit and the chatter and I knew that it was NEVER a reflection of me. No, it was a reflection of the fear those people had of being thought of as ‘different’.

I was born without any outward noticeable differences, and yes I’ve chosen to mark my body with art and other modifications and express myself through changes to my hair or whatever, however it never really felt like a ‘choice’ in the straightforward sense of the word. Unlike the definition below:

‘CHOICE’: an act of selecting or making a decision when faced with two or more possibilities.

In that definition, it indicates that a person has a choice to make when met with two or more options, but sometimes, it does not feel like a choice at all. It feels like you cannot breathe if you don’t make that one decision. It feels like you’ll fade away, or suffocate or lose yourself if you don’t make that one decision.
As I look back at the period of my life from adolescence until now, I can clearly see how those struggles impacted me. I’ve realized that through fighting for the right to be myself, I have developed a strong sense of self. Sometimes I wish the battles hadn’t have been so painful, and that I didn’t have to fight so damn hard. But maybe through those battles, I realized how important my convictions were to me. I realized how much power is in acceptance of who you are.
I can relate to how my clients have expressed their feelings of not being in the right body, when their birth gender did not match the gender they felt. I certainly do not want to downplay their unique struggles because it is obviously so much more than just a disconnect for them. But, at the very least…I can understand that discomfort. I know that without those battles, I wouldn’t have constructed the capacities necessary to empower the youth I work with.

So to all the bullied, the broken, and the ones losing hope…I’ll leave you with a paraphrased quote that guided me then and now: I made weapons out of my imperfections.

When It Attacks

Panic attacks like a thief in the night
Random maybe and out of nowhere
It wrecks your so-called
perfect life

It appears without a warning
And in so many different forms
Like a wolf in sheep’s clothing
You never see it coming

You can’t hide from the mark it leaves on you
Covering your whole body with angry red scabs

Maybe I inherited this madness
Genetics wouldn’t spare me,
And nurture played show and tell with my amygdala
So I never stood a chance

And just like you
I couldn’t stop the panic from attacking
But I swear I won’t suffer
as quietly
as you

Even when I’m lying in the gutter…I can still see the stars 

I watched a video the other night that someone shared on Facebook. It was a danish tv station that made the video. The concept was basic. We are all humans. But it got me.  Watch the video here:

Danish video
Maybe it’s because there’s so much hate and sadness in the world. But the message in the video just got to me. I believe in the goodness of humanity. That’s why I am a youth worker. I believe in hope and the possibilities for a better future. 
Sometimes all the sadness in the world really consumes me and I feel it in every single cell of my being. I think I’m some sort of an empath and can physically feel the pain and hurt of others. Sometimes it’s so overwhelming that I just want to close my eyes and cover my ears so I don’t have to bear witness to it…

With depression, those feelings can easily consume me. But when I get to see the beauty in the world. Fuck, if it isn’t all completely worth it. It’s like someone turned up the lights and everything is so dazzling and bright. And I cry out of sheer happiness..my heart feels like it can burst. Like it will burst, like I can’t simply contain all the love and happiness I feel in my heart. 

I don’t know if anyone else can relate or even understand the feelings that I have. When I feel that way I wish that everyone else could have a chance to have that heart bursting moment but then I think of the flip side and that darkness that comes with it, is something I wouldn’t wish on anyone. 

What if this is as good as it gets?

Through all of the pre blood and other tests and anxiously waiting to find out when I might begin the Lemtrada infusions, I never gave any thought to the idea that it might not be covered by my insurance.

Lo and behold, I was notified today that while my partners insurance would cover some of it, my insurance would not. The cost for the two years of Lemtrada treatment is approximately $180,000. Apparently, Great West Life doesn’t think I meet some nonexistent criteria for the treatment. Which is funny since the leading neurologist at St. Mike’s thinks otherwise.

As soon as I read the words, I felt a slice of panic and strange comfort at the thought of not doing the treatment. I think my anxiety may have had a bit of a reprieve today.

The reimbursement specialist from the MS one to one program in charge of the Lemtrada has been awesome and helping find solutions to get coverage. She helped me file an application for the Trillium drug program (read about it here: https://www.ontario.ca/page/get-help-high-prescription-drug-costs )

The Trillium drug program (if approved) can cover 100% of the costs of treatment or medications. In fact if either insurance comes through they will likely be depleted after this treatment and Trillium can step in to pay for the costs of my other medications. 

So the paperwork has been filed and now I have to wait some more. My anxious thoughts are on a loop, some dreading the infusions, some worrying that I might have a relapse while waiting for this to be resolved and some just for the fuck of it.

In all this shit, I had a weird moment today. Joey and I were driving back from my appt at the MS clinic where I found out that some of my vision has returned (yay!!). 

It was a bleak day, grey and overcast with random sunny spots, and as I was staring into nothingness out the window, came one of those big foil balloons with a yellow happy face on it. 

It was floating along midway up to the sky, crossing a busy street on St. Clair. 

This day, the weather and that fucking balloon…grey skies and goofy happy face balloons…that’s life y’know. 

Happiness comes along in small little waves, it doesn’t hit you in the face and knock  you over. Those kinds of waves that only cause a small ripple. It nudges you, maybe even a poke in the shoulder. 

Sometimes you might even miss it.