Fallen on Deaf Eyes…

I got to thinking.

Over the past several weeks, and through the month of November, I have been inspired by the plethora of advocates in my global “chronically afflicted” community…so real…so funny…so sad…so raw…and I did, indeed, get to thinking:

Is this…doing…anything?  This.  Here.

 

<———————————>

All of THIS.

I’d made a status a few days ago on one of my social media sites.  I can’t remember exactly what I’d said (brainfog) and really don’t feel like going back to find out (lazy)…but suffice it to say…the comments in response to said status were of the: “Uh huh. Yup.” from others of my chronically afflicted friends.

They were comments of total understanding.  Of total…” Tell it again, sista'”.  Of total…”Ya, I fricken know.”

But that’s not what I’d envisioned, exactly, when I’d started this blog…this site…

I envisioned writing things that were raw…exact…real…funny…dramatic…about living with multiple chronic illnesses (read: afflictions) in a made-for-tv-movie kinda life.  Frankly? I think I write pretty damn well.  I think I come up with clever ways to tell it like it is.

I strive to increase knowledge and awareness about causes that might (because I fight it every day) take my life and affect the lives of my husband and children…

Alas…I’m not “famous”…I’m not Maurissa Tancharoen (Whedon). (I seriously want to sit on a veranda and pill-pop with her over some kind of daquiri)

<—–I’ve not gotten myelf some  fan-club.

Those that follow are those that understand…which is FRABJOUS!!

BUT?!?!?!

Being an  advocate is, to me, one who can reach a multitude

(and my “multitude“, I mean: aggregation, army, assemblage, assembly, collection, commonalty, concourse, congregation, crowd, crush, drove, great number, heap, herd, horde, host, infinitude, infinity,legion, loads, lot, majority, mass, mob, much, myriad, number, numbers, ocean, oodles, people, plenitude, plurality, populace, proletariat, public, quantity, scores, sea, slew, swarm, throng…)

of “target markets”.

For me?  That means reaching out to those who I’d originally set this blog/site up for…my healthy friends…my healthy family…friends who had no clue what any of all of this really is… But they don’t see it.

They know I do this, though…write…

Case in point:  The Blogess.  Most awesome woman EVA’!! My inspiration for writing.  You can find her here: http://thebloggess.com/ She recently posted about her epic battle with depression.  Another of the invisible illnesses that any of us advocates…uh…advocate…on any given day.

She, however, was plastered all over my newsfeeds yesterday…her awesomeness touched countless of my friends…

What, then, makes her…”her”…in the statements that she makes.  (Seriously, what’s my point!?!?)

Same friends comment, re-post, re-tweet about that post. Nary once do they comment, share, re-post, re-tweet any of mine.

*shrug*

But…THAT is the place where I want to be…I want the “healthies” of my friends reading this…posting, tweeting, +1’ing…the realities that bespeak not only myself, but the plethora of chronically afflicted across the world. It sucks, actually.  And I know for damned sure that I’m not the only one of their friends with challenges.

So.  I will go ahead and say it.  Out loud.  In writing.  Only of which will fall on deaf eyes…

If I had cancer…would you change your tune? Would you, in fact, hear it?

Oh, I have invisible illnesses…but there is no way in bloody blue hell, that I will go outside looking like this:

<—————————

This is a “malar rash.”

“In medicine, malar rash (from Latin mala ‘jaw, cheek-bone’), also called butterfly rash, is a medical sign consisting of a characteristic form of facial rash. It is often seen in Lupus erythematous but is not pathognomonic… The malar rash of lupus is red or purplish and mildly scaly. Characteristically, it has the shape of a butterfly and involves the bridge of the nose. Notably, the rash spares the naso-labial folds of the face, which contributes to its characteristic appearance. It is usually macular with sharp edges and not itchy. The rash can be transient or progressive with involvement of other parts of the facial skin. A malar rash is present in approximately 46-65% of lupus sufferers and varies between different populations.” – Wikipedia source

I spend eleventy-billion dollars a year on a particular mineral powder makeup that makes me look like:

THIS: <———————————————

Last summer at my mom’s wedding…no re-touch. (Also notice the sparsity of the eyebrows…to date, I only have a handful of hairs on each eyebrow…I have to use powders to fill them in, otherwise it looks like I have none at all.  You know, kind of like after cancer treatment.  Ironic.)

So.

Maybe it’s just time.  Maybe I’m in such a rush to get the word out there about something that causes me pain, sadness, low self-esteem…

…and also makes me fight like hell against a mo-fo of a disease.  A plethora of diseases…

…and it makes me challenge my willpower…makes me use skills, knowledge and experience to modify and create alternative means to do what I do every damn day.

I’m a fighter.  With words and will.

I will be heard.

And it will make a difference.

Because I also have the capability to concede that, just like me, maybe the blog I thought it was, was not the blog it was meant to be. 🙂

7 responses to “Fallen on Deaf Eyes…

  1. It’s all in the timing when your posts are released to your various newsfeeds, and how you phrase the conclusion of each of your blog posts.

    NetworkedBlogs is a great tool to automate postings, WordPress has widgets that automatically kick out posts to various SM sites, but I think to reach more people, perhaps consider a site like HootSuite that allows you to 1) Automate the number and frequency a post notification is sent to your SM sites and 2) HootSuite has analytics that tell you who/what/when/where/demographics/etc. Also, posting regularly (a la 3x a week minimum), helps get your blog out to more people.

    As to the posts themselves, yes we all enjoy reading – you are an excellent writer, and give us a glimpse into your day to day life and struggles, but you don’t pose your audience a question that makes them “think”; that triggers dialogue.

    When you post information about your various illnesses, people read and learn, but they don’t walk away with questions that include “how do I”, instead it’s the natural mindset if humanity to think “glad it isn’t me” (think why ‘reality TV’ is so popular). Instead, they walk away with “interesting….” and leave it at that.

    One last thing… I just noticed you don’t have a lot of SHARE buttons on your page. Adding a widget like Sexy Bookmarks or Sociable would help your readers spread the word. I want to click and post to Twitter, Facebook, LinkedIn, Digg, ETC ETC ETC. 🙂 xoxoxo

    • I totally get the timing part.

      The rest of the comment is EXACTLY what I was looking for. I commend your suggestions and will most assuredly look into that stuff.

      I do still, however, concede that this might be going in a direction I hadn’t intended. Change is never comfy, but sometimes it’s most assuredly for the better. 🙂

      • I’ll see if I can find some good social media info that might help. Mashable.com usually has some good tools, as might techsavvyagent.com (but that one is more real estate oriented). I think I may have also saved some articles to Evernote. There’s also Dabney Porte’s Social Media Manners — they have a #smmanners chat once a week. I’ll send you some info, if I can find it. In fact, I recently read an article comparing SM Management tools (a la hoot suite/sociable/tweetdeck). There’s a social media mastery program being offered by someone on my biz list (I think, Lisa Larter), but I haven’t seen too many details about it.

        As to the rest, in exactly what direction had you intended, and in what direction do you see it going in now, in comparison? I’m curious where you see the shift in your original aim.

        And I fully agree… change is seldom comfortable, and many times, for the better.

        I can feel goals for 2012 battering my brain to be written somewhere large that I can see them every day, but the little girl inside me cringes at the thought I’ll be told something is stupid or unattainable.

  2. Tracy Thillmann

    Dear Brynn, I totally understand the drive to get the word out to those who don’t suffer and thus may not truly see/believe what is going on. I am truly grateful for your strength and your great writing. As a person who knew very little about what was going on personally with a chronically ill person. Sure in school I learned the theory but you can’t understand with just theory. Having now realized I have suffered many chronic issues for years without really thinking of them that way and sloughing off my daily pain as getting older I am happy I have your blog and your net know-how to find other sites that help. Since I am still in the stages of figuring out what the frak is going on, I find comfort in reading your “bad-assery” and your kick it in the face attitude. You can lead them to water but you can’t make them drink. I am hoping this year will be the year of more eyes opening, doctors/family/friends, etc. Do it for you and the rest will come. Gentle hugs

    • Tracy – I share most articles I come across, when it comes to what affects chronic illness, whether it’s nutrition or mobility based information; I also do my best to share LupusInterrupted.com with as many people I as I meet. (I was supposed to get a handful of business cards from Brynn, but I don’t remember ever receiving any). I also get into dialogues with people about chronic illness, and because of THIS blog, I usually have nuggets to share – including with crafters of home-made lotions, and with healthcare professionals; occasionally, I even have nuggets from them to bring back to my #spoonie friends. (I need to make a spoonie list of my friends on facebook) 🙂

      You may not know this, but I also suffer a chronic illness. I’m asthmatic, and have been since the age of 8 years old. Since I hit puberty, I suffer joint pain in my hips and knees (and the flares are random), but nothing has been diagnosed. I learn from all my #spoonie contacts, and even try to implement some of the changes to see if I reap any benefit. So far, nothing to report. *grin*

  3. ohh you have tugged at my heart dear Brynn. I so understand what you are saying. It reminds of what a friend of mine said the other day that “healthy people just don’t get it”. And if only there was a way for them to “get it” cause there are so many people out there that feel like no one is there to support them and to understand what we are going through. I’m surrounded by people (family/friends) that just don’t get it. A mutual friend of ours also said the other day that sick people hide behind their sickness. Of course, she is healthy, she doesn’t get it. I was filled with such mixed emotions, I didn’t know if I should smack her or what. There are days I think, if only you could spend a day in my shoes, but then I wouldn’t want to wish that on anyone. Since sharing the spoon theory, still people don’t get it. I think we need to share it in such detail to try to get people to think they are experiencing it. One thing I agree with Marie’s post, is ask your audience a question, that will make them think. But provide YOUR answer. Like the spoon theory of getting up in the morning. My husband pops out of bed and gets on his day. My mornings, it takes me 2-3 hours to get functioning. Anyways…. just have patience Brynn. You are an excellent writer and I truly believe you will get your message across. I BELIEVE IN YOU ! XO

  4. I can totally relate to you when you believe in something so much and want to get the word out but no one hears you. What you have to see is that your helping those friends taht do read your blog. I being part of the invisible unhealthies love your witty banter on your blog. Ive had pinups for cance up for months and its has trickled to a stop. No more commisions come in and the same people comment but I still look forward to someone commenting. Even if it is an :uh huh.” Just so you know you have a fan club. Its small and very exclusive… its at our house . THe BRYNN CLUB! Mae and I can wait to read yout next post and read how unFfranjous or Frabjous your day was. YOu inspire me to not be so depressed and be positive. And news of the miniture gingers are hilarious. take care. much love

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