Weird Normal & Cancer Envy; Part One of Bear With Me

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.

Bear With Me 4I 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.

 

Because I Can…

people heart redSometimes, maybe a lot of times, we need to remember, or at least ponder, what this whole experience of life is supposed to be about.  We hear it all the time; it’s about love. It’s about helping one another.  It’s about lifting each other up when we’ve been pushed down by experiences too heavy to carry on our own.

Living this mindset to any great degree didn’t happen overnight for me nor did it come easy. My middle name is Macadamia, (look it up). It took a number of jarring incidents to make me stop and assess where I was heading and how. We call those incidents philosophical bricks.

Philosophical, schmilosophical – the solid OUCH of those bricks served to open my abilities to care beyond my immediate family needs and the occasional charity event. One clunker that demanded attention is a chronic health condition. When I’ve had to deal with acute phases of it or any other life crises, (I’m really good at getting those), I’ve had the honor of being taught time and time again how living up to life is actually demonstrated. As it turned out, it’s really not as hard as I once might have resentfully imagined.

Those who know me would likely say I’m a strong person.  I know I am.  If you haven’t been defeated by life’s bricks and kicks, you likely are, but there have been times when I’d been so far down, I’d have sworn I was at the end and I was good with that. Relieved even.

I wish I could say I pulled myself out of those periods of desolation by the straps of self-determination, but the truth is, the ball to real self-help really couldn’t have started rolling if I hadn’t first been shown the path via the hearts of my near and dear.

They weren’t the surgeons or psychologists or ministers.  They were the friends who came to me to talk, listen, and hold my hand while I cried. They shared their wisdom and their resources to nurse and support the basics of life.

At the worst of times, they managed to break through despair that was blocking my will to fight any more. They showed me how to breathe once again through those debilitating trials. They worked with great and gentle care to help me feel seen and heard.

Those acts of simple and generous kindnesses were teaching me how to be a better human being, even as I felt incapable of even existing. In the most exquisite and genuine ways, I learned how to act when life grabs a tight hold and demands immediate action for survival.

Compassion changes so many levels of pain. It infuses you with honest empathy. It changed me in ways that I hope never gets unchanged. They showed me how to get up and say, yes I can.

Yes, I can get through this day, pain, event. Yes, I can take time to tell someone I’m thinking of them. Yes, I can listen, yes I can cook a (barely edible) casserole for someone who can’t.  Yes, I can give a few dollars, even if it feels like I can’t afford to, yes I can help.  I can do all the things done for me and more. Yes, I can.

My ‘Yes, I Can’ mantra graduated to ‘Because I Can’.  For me ‘Yes, I can’ and ‘because I can’ means I am alive. I may be limited in talent or immediate resources, but I’m not limited in possibilities to demonstrate care.

It’s my sincere desire, maybe even an obligation, to live up to the promise, the truest meaning of life as so ably demonstrated by those loved ones I call heroes. ‘Yes, I can’ is more than a trite statement or a campaign slogan, it’s a way of life.

It’s not about becoming a saint or a world leader to do something that changes the world. You don’t even have to be a ‘good person’; if someone needs a hand, help them.  I’ll bet you’ll end up pretty happy too, and if not, then please be reasonable enough to settle for content. There are plenty of days in a life well-lived when that is more than enough.

RL

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