Poised at the final frontier…

In any war their will be casualties.

Nothing has opened my eyes to this clearer than a message I’d received in response to a query as to whether or not I, or my actions, had been viewed as an affront or insult to a particular set of people.

Good people.  Solid people.

In a nutshell, I was curious as to why I got the boot from a friends-list.

The response was heartbreaking on three accounts.  One, that the particular reason really had nothing to do with anything I had done, per se…that I have not lost their connection socially.  Second, that the particular reason was saddening in and of itself.  Third, that the particular reason had everything to do with “Me.”  And it hurts. 🙁

Let me backtrack a wee:

I, over the course of the past year, have ramped up my efforts to educate and explore all things “chronically afflicted.”

I push to open the barriers of social taboo in order to empower other “chronically afflicted” to come out of the dark, let their afflictions be known, thus enabling themselves to STOP the invalidation of societal norms.

This is a wee gander into the made-for-tv-movie chaos that are the daily aspects of my life…as a mother…as a wife…as a woman with kickass mo-fo diseases…I sacrifice modesty and privacy in order to provide an open-book view into the lives of those enduring chronic conditions.

And I’d like to think that I’m making a pretty swell effort in this regard.

Change is never easy.  Change of societal norms is akin to getting blood from a stone…pulling teeth from a cow…trying to figure out a good similie while jacked up on a Flexeril/Dilaudid/Naproxen cocktail first thing in the morning…*headdesk*…

However.  There is one consequence of doing so that I’d previously not forseen:

My presence, my posts, my entire life at this point…is reminding some select persons of their own difficult afflictions that they would prefer to neither focus on, empower, nor acknowledge for the sake of maintaining the status quo.

In a nutshell…they want to maintain the “normalcy” of life.

In a nutshell…I am that constant reminder of all things they do not wish to recognize.

(O.O)

Now, in all fairness, I needed that reminder.  I did.  It was the reason I’d made my Facebook “page”…the reason I hauled my “I’ve-earned-this-ass” onto the Google+ train.  I’d wanted to  “cut the cord” between myself as a “Me” and myself as “Your Friendly Badass Chronically Afflicted Canuck.”  I recognize that I have, however, been posting regular health issues on my regular “Me” account.

Why?

Because being chronically afflicted IS a significant part of “Me.”

I am reminded, however, that my distress regarding some people who I really wish would follow my conditions (as a validation of why I “chronically decline” events, for example) is negated by the fact that they just don’t want to hear about it!  If they did, they would follow me on my so-called “health accounts/pages”.

In this regard, I truly must recognize that people just do not have to give a shit, friend or not.  I truly must “Suck it up, Buttercup.”

It does, however, solidify my view that I am at a pretty significant crossroads in my life.  I feel like I must completely segregate between the “Me” and the “Chronically Afflicted.”  I feel like I must choose between being “Me”, posting “Me” things, and being a kickass health activist whose purpose it is to inform, educate and empower others to enable themselves to push through the Whine-1-1 and pursue a heightened quality of life and a desire to educate, inform and empower others.

Really, it’s kinda like it’s own Wella Balsalm commercial.  I tell 10 friends who then tell 10 friends…and so on…and so on…

At this point, I verily believe that what I am attempting to do is well received by my communities.  I verily believe that I have, to some degree, broken the societal taboos and empowered people to speak out about their afflictions in order that certain social relationships can be better understood within their own lives.

I know I have lost good people along this journey.  I know they are entitled to not give a damn.  I know now that I can be a reminder of their own difficult circumstances.

Such is the nature of the war I fight.

Such is the nature of fighting for the greater good.

Such is the nature of sacrifice.

So, how do you manage the consequence of the people in your life going AWOL once you’ve chosen to be public with your afflictions?  Who stuck around? If you’ve no afflictions of your own, how do you manage watching your friend/family member go off on a journey of which you must decide whether or not to follow?

I am embarking on a new journey.  It is where I am meant to be at this moment, this point of my life…because ultimately…it is, most assuredly, my life.

“SpoonieVille, the final frontier.  These are the voyages of your friendly neighbourhood Chronic Badass.  Her five-year mission: to explore strange food products and supplements, to seek out new therapies and new holistic approaches to inflammation, to boldly go where no chronically afflicted has gone before.”

6 responses to “Poised at the final frontier…

  1. There is a post floating around on Facebook right now that says something along the lines of “There are 7 billion people on this planet, and you’re going to let ONE of them ruin your day?”

    All things aside though, people need to know why you constantly turn down invitations, and understand why they shouldn’t take it personally; and, if they don’t want to know that you’re in the hospital because one of your illnesses swept your feet out from under you, then why do they consider themselves part of your friends inner/outer circle to begin with?

    There really are ways to break your two-faces-of-facebook apart, but honestly, is it REALITY to expect people to post HAPPY stuff on Facebook all the time? You can invite people once or twice a week to follow your badassery on your Page if they do want to participate in a core part of your life, and only post the “yay the gingers did this” on your personal page; that’s a SAD expectation for anyone to have of a person’s profile.

    Sometimes people NEED to be reminded of their plight, because sometimes, the nugget that you share, makes a significant difference in someone else’s existence, whether they realize it or not.

    You keep doing what you do. You are fantastic at it, through the agonies you deal with every day.

    IMHO, your illnesses have made me pay more attention to what I eat, what exercise I do, AND pay attention to the sheer volume of spoonie’s I have on my friends-list, and share everything I find that might help just ONE person.

    I’m not that close to you and I’m still here, I still follow all your posts, and I’ll drop whatever I’m doing to be there for you, if that’s what you need.

    And I’ll share all the Social Media tips tricks and tools I find with you, just so you can stretch farther than ever before.

  2. Hon, you are a complete package as a person. You cannot separate yourself from your illness(es) as you have mentioned above… I spent the first 30 plus years of my life thinking I was perfectly “normal” barely acknowledging a disability that I had been born with. Feeling like a failure because I was uncomfortable in social situations with large amounts of people, talking on the phone, etc. The fact that I was born with a genetic condition that caused me to only have one ear and be profoundly hearing impaired was not even acknowledged. I needed to be more social, force myself forward… all the time ratcheting up the social anxiety issues, stress related illnesses, etc. One day I was reading and realized deep within myself that I was DISABLED *gasp*. I was not “normal”. I still try to hide my weaknesses from others, etc. but this was a breakthrough for me… to acknowledge this deep inside. I wasn’t crazy that I had “issues” in communicating with my teens (at the time). I realized every time I forgot to put on my glasses how much I needed them to hear. I instinctively read lips, body language, tone, etc. in order to fill in the blanks for what I was not hearing. Wow, I was misinterpreting and it was causing strife in my happy family.

    It was okay that I didn’t want to work working on the phone. It was okay that I needed quiet in order to “think”. It was okay that I was tired of pretending that I was “normal” and needed to do what everyone else was easily doing.

    I think the fact that you talk about what is going on with your illnesses is a necessary thing. You have made me realize that other things going on in my body are NOT normal and, while the doctors haven’t come to conclusion, I have taken steps to start to eliminate known aggressors (foods, stress, etc.) from my own life. To start to really fine tune my life into what is important so that I am around to see my grandchildren and enjoy the next 40 years of my life.

    Hugs and keep fighting the good fight!

    Pam

  3. Some people…! That about sums it up! I love what you are doing, keep it up!

  4. (((((Hugs))))) and a spoon to you, to help you keep swinging that sword of communication.

    I have only just begun to get to know you, and only very recently started reading here regularly. You have helped me have the courage to be more vocal, more public, about what I go through. I’m 20yrs deep in this. At one time I was very active: I was in the group demonstrating in front of OCPS and canvassing for getting them to recognize CFS, when I was in the GTA I was one of Dr J Kropp’s patients and was interviewed for his defence against OCPS’s fabricated case against him. I have not been active for years, other than passing on what info I can to those who ask. Now, due to you, I am unsolicitedly reaching out, offering info/insight/experience.

    Thank-you. I think you are pumping out a lot of good into the world. I find you to be someone with massive and fierce, courageous integrity. Bless you. Please continue.

  5. Tracy Thillmann

    You are who you are, illnesses and all. I too am pretty open about who I am and what I go through. When I found out about my anxiety I told people and then others came out of the woodwork saying they were too. I never knew. Some people can’t confront their issues and that is okay. Eventually they will if they want to have a good quality of life and not let the illnesses take over but I for one don’t judge those who feel they need to avoid to cope. Everybody is different. I read all your posts from your personal and chronic badass account. To me I see them as together and distinct from each other. You can’t make them completely separate because they are both you. And th personal side of you has that swollen hand this morning not just the chronically afflicted you. I for one and enjoying your updates and cheering you on, being upset when things go tits up, and rocking the fight. I just know you as Pattie Brynn Hulquist, a badass. 🙂

  6. Oh Brynn,
    That is bloody awful! Sorry, but I can’t believe they really were friends. (After all, when you see a post on Facebook, you are free to not respond to it – and you don’t have to follow links to blog posts.) If it’s a matter of not dealing with their own stuff, then you’ve probably done them a huge favour, and if they grew up, they’d pay attention and deal with their own stuff.
    What you do online is very important. Don’t give up. Your taking the risk of being honest helps the rest of us do the same. Your contribution to the lupus community on-line can’t be measured.
    Thank you
    Iris

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