Friends, Ed & E called. They were concerned, curious mostly about the intensity and/or emotional topics on my recent posts, and because I’ve been missing in action.
I have been quieter in general, but to address some of their concern, I explained that I usually write about my or other’s experiences in the way they felt at the time of the occurrences. It gives the impression they all happened recently, but really they could have happened yesterday or thirty years ago.
I do mix them up because while they make the point that I want, it also protects people who may need shielding. I also just like to indulge in a little mystery for fun.
Admittedly, the events of late are not all related to that fun; they have been more unusually taxing. So yes, I’ve been more reserved in my activities and have expressed more personal poignancy in my posts.
I manage a rare disease within my daily routine. For the most part everything about me seems pretty normal, except for when this disease bounces my world into chaos.
To explain the beast in 10 words or less – it’s an inflammation-based disease of all kinds of irritation, but mainly it unpredictably interferes with organ function and defies prognosis. It’s a pick an organ, any organ to screw with when it’s bored or cranky, kind of bastard. I call these visits by it, the ‘big ones’.
Friends may observe it has pounced by my newly inhibited movement, or noticeable weight loss, or I might be hospitalized for months engaged in hand to hand combat with the Grim Reaper. Sometimes he’s content to just gnaw on a limb for a few weeks.
The moments in between these time-outs are the same as most – work, growing kids, growing me, up days, down days, and once in a while even surviving catastrophic days unrelated to my health.
This fall, previously written about on the loss of someone I loved, and the pain of a betrayal, played into that old myth that these sort of events come in threes.
So, in the midst of the hell, number three showed up, in the form of another scary, frustrating flare-up. It would take another post to detail it and I’d rather leave it at saying I acquired a painful syndrome that they say will take a couple of years to unwind. It also triggered a former crisis. Let the good times roll.
Of course, I’m scared. Yes it troubles me, and yes, I’ve cried. Navigating pain is tricky business & each of these events makes me feel just a little bit or a lot bit, lost at times. There is a real aura of alone because I am in some ways, the least of which is that I have never met anyone who has my disease.
Not that I wish for someone else to have it for company. It can stir up a weird head space though. I’ve actually envied cancer patients. They have so much support, myriad services and immediate sympathy. And ready understanding.
Once I walked out of a private ‘washroom for disabled’ and a woman waved her cane and loudly castigated me, “You should know this room is for the disabled!”
I’d used the privacy to deal with a temporary drainage bag attached into my belly. I only stared at her, feeling indignant embarrassment as I brushed past her. I wish I would have said something to puncture her presumptions and I still can’t believe I didn’t…
That experience was too new for me to think fast enough. Maybe. Probably, I was drugged. I’d later considered wearing a scarf to cover my hair – chemo hair-loss style – whenever I was struck by the big ones. I eventually got over that and earned another level of psyche strength; I definitely don’t feel obligated to always explain myself anymore.
Which leads me toward the point of this post. Well, it will somewhere down the line.
Hindsight is 20/20 when measuring growth through adversity, but when awesome reader/friends, Rebekah Ingram & Randall Willis, zinged me with some gorgeous insight, there was an intriguing moment of ‘aha’!
Their views pointed me to observing the growth & changes in me as they are occurring. Maybe we call it 10/10 forevision. This means I’m paying attention to what’s going on in my feelings, body & spirit now, during these trials, rather than surviving and processing later.
Along with mom & dad flying across the country to hug & assist me, I believe applying this new aspect could, in some ways, help me heal a little faster.
It’s another work in progress, but I look forward to seeing what’s being brought to me and through me with this new process. I’ll start in gratitude to these friends for sharing their caring hearts at just the right time.
For someone who used to know me…