Monday, September 9, 2013

Invisible illness

"But she will have to be healthy herself to help Lisa resist her urge to take on her mother's illness out of grief and loyalty. The complicated connection between children and adults is the underlying theme of this big-hearted novel."

Looking at titles by Amy Bender a few mornings ago,  I found this quote which was part of a review for her debut novel, An Invisible Sign of My Own.  I offer it as further proof that we never know the ways in which we may fail to see the hidden threads.  We just never know.

Several days ago I received a FB invitation to participate in "Invisible Illness Awareness Week," sent by a friend who knows we have in common living with invisible illness.  I try to avoid writing about this as an aspect of my life because I wonder if doing so gives the whole situation too much oxygen, if it makes things bigger rather than decreasing their size or order in the line of march.  Then I began to wonder if by giving it temporary prominence there might be information for someone else - or for me, often clueless and stumbling.
Trying to explain adds to our exhaustion.  Art by Edward Gorey

Spending time with illness or perhaps some of it could be called affliction - giving it a proper label which does not suggest anything other than human dignity is like trying to capture mercury which spilled out of the broken thermometer - helped me see that all illness has an aspect of invisibility.  A body and/or mind under extreme duress becomes less extroverted.  We pull further within, possibly in an attempt to understand how or when or why the wheels fell off the wagon.  The experience is part of us in a way so interior and personal that even if our symptoms included dramatic exterior changes, there would still remain hidden, unsharable alcoves.  No matter how willing we are to be open about our situation, there simply are parts which remain invisible, perhaps unknowable even to us.  Slowly or suddenly, everything has changed.  Adapting to that is a process which may take the rest of our lives.  All who know chronic illness or any of its near kin belong here.  Invisibility is an aspect of finding that our bodies have turned on us.

First, I don't believe depression is invisible.  I see it - and its fallout - everywhere.  It is not unaddressed or untreated, yet its influence behaves like a broken water main or a secret underground river that creates the sinkhole big enough to swallow a neighborhood.  First diagnosed when I was a teenager but not taken seriously enough by me or anyone around me, it next caught a doctor's attention following lengthy battles with pneumonia which evolved into chronic fatigue.  At the time of that diagnosis, antidepressants were the treatment of choice for C.F.  Later, it became apparent that I'd been depressed my entire life.  It was a chronic rip current that kept pulling me out to sea, sweeping me past what I sought for comfort and familiarity.  Depression arrives with so much baggage the suitcases have to be stacked on the lawn.   If we come from neglect, we perpetuate neglect and indifference toward ourselves.  We are ambivalent, at times simply about being here, certainly about how much of our diminished vitality we are willing to put into anything, including life.

After reading the Amy Bender review, I wondered for the first time if I had somehow volunteered to carry some of their burden for both my parents - melancholy, underachieving, avoidance, weariness almost beyond description, an on-going state of overwhelm and, for many years, self-loathing on a felonious level.  It never occurred to me that this might not all be mine.

Then there is chronic fatigue - undiagnosable, identified as well as is possible by its symptoms.  It was when I first spoke with the nurse practitioner who referred me for physical therapy, just under three months ago,  that I learned she was treating a much younger patient with chronic fatigue whose legs had simply stopped working.  My, as they call it, debility, began with arthritic knees a few decades ago, then following a health crisis for my son, the only specific event I can think of as sufficient recent trauma to further deplete dwindled reserves, went into rapid decline.  With the nurse practitioner's wisdom, the perfect-for-me physical therapist and toughness I didn't know I possessed, the debility may not be a permanent state.

Where I am at this moment is mulling the quote, jabbing a pointy stick at the possibility that I don't have to own all of this, call it mine, stuck with it forever, unable to leave it in a cardboard box by the curb for disposal or being claimed by the unwary.  At times in my life I suspect I pretended that I could pass for normal but that has never been true.  It has never felt true.  Where I have been for the past week or so and especially that last few days is wondering if it is possible to declare happiness over not having succumbed to my history, to my symptoms, to diagnoses.  Awake in the middle of the night, it seemed right and true to say that I have no way of knowing if I am or am not altered from how I began this life.  The fairy tale notion of a happy child turned morose, estranged and odd by bad luck just won't hold.  We all come through things that would outmatch tanks or other armored vehicles and we are still here.  We can't know - if there was a plan - if this was the plan all along.  We can't say, "... it shouldn't have been like this, it was supposed to be different."  It was what it was, it is what it is and if we've turned scaly, if we've taken to our wheelchairs, if we weep most of our waking hours and experience PTSD as though each episode was the first time, if we take more meds than we can count, we're still here.  We've survived.  I would rather be happy than not, would rather believe in the impossibly good things that happen or can happen and begin to accept, at an unarguably advanced age, that this, no matter how it looks, IS the life I was promised and none of this is a mistake.  Let me see what can be made of this.  At times invisible, never truly alone. 


T. Clear said...

We can't say, "... it shouldn't have been like this, it was supposed to be different." It was what it was, it is what it is and if we've turned scaly, if we've taken to our wheelchairs, if we weep most of our waking hours and experience PTSD as though each episode was the first time, if we take more meds than we can count, we're still here. We've survived.

A long quote, for sure, but it's the
passage in this beautifully rendered post that I will take with me tonight into my dreams, and then tomorrow, out into the greater world, survival neatly pocketed, like a lucky rabbit's foot, to guide me through each day.


Erin in Morro Bay said...

Eloquent and quite apt. It is what is was - and now there's today and tomorrow. And we do survive.

Marylinn Kelly said...

T. - Thank you. That is a strong visual, the lucky rabbit's foot. We do hold charms in our pockets. We just need to remember them. Survivors, go forth. xo

Marylinn Kelly said...

Erin - Thank you. What cannot be changed...still here, hallelujah, still here. xo

Patti said...

I am SO glad you posted this!! Here's to unpacking a suitcase or two:)


Marylinn Kelly said...

Patti - Thank you, catalyst for this giant step. I, too, am glad I posted it. I've had much to think about and even discuss with the nurse practitioner today. I may need to write soon about integrating our compartmentalized selves. Now there's a task. xo

Lisa H said...

why aren't you writing for The Huffington Post?

I'm lucky enough to know that this is truly the way you speak. A casual brilliance that continues to illuminate my life.

All I can say in response is:
I have no words.

Marylinn Kelly said...

Lisa - Well, they haven't asked me and the desire to apply for work diminishes further with each passing day. And thank you for even thinking it. Yes, you do know and yes, it is the way I speak - often confused with talking in tongues - I can live with that. Stay safe up there in the cascading high country. xo

Angella said...

Thank you for this deeply insightful post. You cannot know how much I needed it tonight.

Marylinn Kelly said...

Angella - Thank you. I am glad to know the timing was just right. It is so reassuring in what appears to be utter chaos when we somehow find what we need. Sending good thoughts. xo