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…
<—–I’ve not gotten myelf some fan-club.
Those that follow are those that understand…which is FRABJOUS!!
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.
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:
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.)
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. 🙂