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#HAWMC Day 21: Refracting Reality…

#HAWMC Day 21: “Reflection. This is a day to reflect. For the WEGO Health family, we reflect on those who lost loved ones in the Boston Marathon Bombing last year and hope for a bright future for those impacted. Reflect on your journey to this day, what are your thoughts and hopes for the future?”

I’ve written and erased four different attempts at this post. One was too wishy-washy. One was too serious. One was too “I should prolly have a therapist on speed-dial.” One was…

…too real.

Maybe that’s the reflection. Reflecting on just how real this journey-that-I-never-wanted has become.

I don’t want it, this journey, often sometimes. I want to be that law clerk that I studied so hard for whilst single-mom-ing it. I want to be that professional whose clients were enthralled by my depth of knowledge and patient understanding of difficult challenges that could assist them in regaining some sense of normalcy in their chaos of reality.

Well, shit.

Seems I’m still doing that…but in a different forum.


Then why am I so sad, so often?

Aren’t I thrilled to be helping and assisting and sharing the

knowledge + “own your shit” = empowerment


Dude, I haven’t really ever had the time to address one simple fact:

I still haven’t grieved over the loss of the “Me.” that I used to be…

Am I kick-ass at changing my perspective? Acknowledging the “new normal” of the “Me.” that I’ve since become?


But grieving is still a critical part of the journey in chronic afflictions. When my legs burn so fiercely that I can’t move? That shit ain’t right! I’m not just frustrated…I’m enraged. Life didn’t used to be like this!

Am I not thrilled that my words bring comfort to an aggregate of afflicted in the #chronicallyawesome community? (you totally need to click that link…)


But…what about the loneliness I continue to feel when I can’t participate…when I’m excluded from participation…when “It’s not all about you.”?

Here’s the thing about being an advocate for chronic illness issues…and I’m going to go out on a lil’ limb here…but I’ll bet dollars to donuts that there’s some similarities here between all advocates of chronic illness:

When I share to the extent that I do, especially the good parts…the successful parts…it makes me feel “included.” When I find myself in a position to be in a public status of recognition…it makes me feel…”normal.”

When I share awesome shit…it’s  like a drug. It gives me a high and a sense of empowerment of the “look what I can do whilst fucked up with autoimmune shit” variety. Sharing is like my own personal brand of crack. Or, chocolate. I should prolly go with chocolate.

Thusly, (totally a word…Sheldon Cooper used it…) when I share to the extent that I do, and am excluded or neglected from participation in activities, treated as an after-thought, it highlights that I am not “whole” or “worthy” of “normal” people’s consideration.

I said it.

I’m also deathly afraid of using “I” statements when trying to illustrate to someone else that I’ve experienced or felt a similar circumstance because…“It’s not all about you.”

But…but…I know that…I…*get* you…I…


I can’t win.

My reflection on my journey has been mostly focused on and about the reality of the social response to chronic illness.

Each time I illustrate the reality of my journey through chronic illness, I am reminding myself of just how “health challenged” I am…and it makes me sad…on the inside.

Hits me in the feelz.

That’s just a reality.

And valid.

I hope that the strength I’ve found within me from my experiences to date will help propel me to continue to redefine how I see myself for the future…I hope that I can continue to advocate in writing with the words that people need to redefine their own journey for the future…

I hope that in doing so, that my own reality is not forgotten for the sake of the “greater good.”

Because *I* matter, too.

Never invalidate your matter
Never invalidate your feelings…you matter



  1. Mae

    The story you tell us in YOUR own voice can have as many *I’s* as it needs to, I think,,because it should, its your story and you’re telling it!
    But I get it,

    and you DO matter 🙂

  2. Janice

    I am 9 years in and I still don’t think I have completely mourned and let go of the me I used to be…. I’ve made progress, but honestly not sure I will ever be completely at peace with it.

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