And Then There Was Hope

Three years ago today, I dragged myself out of bed, and with the aid of my walker (and likely a wheelchair), I paid a visit to a local doctor/ practitioner of Functional Medicine.

Getting out in those days was a huge ordeal, and typically entailed a backlash that would last weeks. I was that sick. I was also desperate.

I found the notes on that early visit when searching through my archives, looking for an interesting anniversary in response to this week’s challenge.

My family doctor had cautioned me against hoping for too much, but this new doctor, soft spoken, listened to me intently, and took the time to explain, and then, we made a plan. A plan for recovery! Something I had not thought possible.

Three years ago today, I found renewed hope.

(To read the original post, click here. V.J.’s Weekly Challenge is anniversary. There’s still time to join in.)

Shake Ups

The new year grabbed me in a choke hold and hog-tied me before I had a chance to even think about what it might bring. It started with a text that my mother was in hospital, followed by a harried searching of flights and anxious speculating about how I’ll get home. Me, who hasn’t ventured anywhere without an escort for over four years.

Needless to say, I made it, and even though my symptoms are flaring and I’m exhausted, I am also pleased by what this effort portends. Dare I hope for an even greater return to life?

It’s been four-and-a-half years since I was diagnosed with Myalgic Encephalomyelitis – the disease that severely disrupted my life. In almost imperceptible graduations, I have improved. This recent shake up seems to have pushed me over a line from which I can redefine myself (unless a setback is triggered, which is always a concern.)

Mom has rallied around and is currently stable. The woman is incredible. Although she says she no longer wants to live with constant pain and struggles, she keeps going – insisting on walking me to the elevator after my visits and taking her meals in the dining room.

“At least I know you love me,” she pats my arm. “No need to come back again should something happen.”

She’s more worried about me being inconvenienced than she is about her own health. Ever the mother.

I have no regrets about coming, and as cliché as it sounds, I feel as if this happened for a reason. I needed something to break me out of my comfort level and stir me up.

“It’s like I’ve been living in a bubble,” I tried to explain to Mom. “No noise, constant rest, limited interaction, and measured outings.”

“It’s not right, at your age,” was her response. “You’re young yet.”

It’s not how I ever saw my life going, for sure, always so active and involved. I wonder now if I’ll ever get some of that back.

2019 has accosted me and thrown me 1600 miles off-base, but I also have a sense that this is what I have needed to break up the waxy build up that has been molding me into an ugly complacency.

I am sixty, and if my mother’s legacy is anything to go by, I still have thirty years left of life. Time to start setting a vision for myself, I’d say.

Hawk Inspired

Inspired by the poem “Time Wrapped Moment…” on Windswept’s blog, Lakeshore Ponderings, I’ve decided to reblog this short story from 2016.   Funny how something written so long ago can have relevance today, but it does – perhaps even more so.  Windswept has eloquently captured in a few words the sentiments the I tried to portray in writing the piece.  Lovely synchronicity!


One Woman's Quest II

(A short story; fiction.)

The grey days are the hardest; you know the ones, when the clouds, so full of tears, are working themselves up to a full-blown cry. My projection, I know, but I prefer to think that the weather mirrors my own inner gloom. I am less alone that way.

This winter has been a particularly hard one – stripped me of all resolution – I am hanging on by a thread. I stopped answering all phone calls weeks ago, too weak-spirited to listen to the false cheeriness on the other end.

I linger a little longer in my bed, eyes focused on the cold, slate sky, old bones resisting movement. The kettle is not going to boil itself, I tell myself. Slipping on the battered mules that guard the side of the bed, I shuffle to the kitchen, muscles moaning.

As miserable as I sound, I…

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Two years ago, I was barely able to get out of bed.  Two years ago, I wondered if life would ever get better, or if I was doomed to a future of isolation and deprivation.  Words were the weapon I employed to battle my way out of the kind of depression that accompanies debilitating illness.  In February, 2016, I wrote this poem:


Maybe I just needed a new perspective –
like the famed Hanged Man of tarot –
committed to some deep, internal need,
willed a horizontal shift, landed with intent.

Maybe it is not my legs that are disabled,
but a soul longing to escape the continual
discord of perpetual motion, a never-ending
to-do list of the success driven persona.

Maybe there is a greater purpose for being
that is not encompassed by outer drive –
a mysterious meaning that is revealed only
in the quiet stillness in which I now dwell.

Maybe I have been called to a personal
pilgrimage – a Camino of sorts, a crusade
of spirit designed to cleanse and enlighten –
the journey is certainly arduous enough.

Maybe it is through acceptance, finally
having released a need to control, move,
achieve, accomplish that I am able to
embrace the true lessons of suffering.

Maybe this cocooning is an act of Grace
demanding surrender before the actual
transformation occurs, and I will emerge
legless or not, winged and ready to soar.

Maybe, just maybe, this stripped down,
barren existence is not a penance for
shameful living, but a desert crossing,
offering re-alignment, hard-fought peace.

(V.J. Knutson, 2016)


Rereading this poem now, I applaud my spirit’s resilience.  I give thanks for the strength to carry on and believe even when I could not see an end.  Today, the illness lingers, but it has lost its suffocating grip.  The “transformation” is occurring; I am feeling the potential of “wings”.

For all of you out there feeling trapped in the moment, keep faith – you are stronger than you know, and there really is a tomorrow.




How Illness Improved my Writing

It’s no mystery that stripped of all obligations and confined to a bed provides the coveted time to pursue writing skills, however; it is the actual experience of illness (in my case ME/CFS) that provides the platform for expansion.  Although I have been a ‘writer’ since my early years, the past four have marked a turning point, almost as if the absence of ability is the catalyst I needed to create a solid voice.

My first journal was actually my father’s Week-At-A-Glance desk calendar. Just learning how to write, the entries are laughably mundane:  got ice cream…hate my sister…like Stephen.  (Seems even back then I was boy crazy).  Nevertheless, it started a habit that has continued fifty years later, the journals evolving and eventually being replaced by blogs.

While declaring myself passionate about writing, I also managed to keep any hope of ever succeeding at arm’s reach.   Various career paths offered aspects that required penmanship – typically technical manuals, or short pieces for business newsletters – and teaching allowed me the opportunity to facilitate a creative writing class, however; I was always too busy, and too full of excuses to pursue it any further.

I was convinced that I had nothing worthy of sharing, that I lacked the maturity needed, and that writing was just self-indulgence, and not a viable source of income. (Damn, I still think these are all true…but anyway…)

Illness knocked me off my feet and landed me in bed, barely able to do the most basic of tasks, like brushing my teeth or washing my hair.   I wondered if I’d ever be able to do anything of merit again, and that is when the doctor suggested:  If you write, you might be able to do that.

So my husband bought me an MacBook Air and I began to write again, only this time, I didn’t waste my energy on journalling;  I had a purpose.  I was driven to capture in words the reality of a life lost to illness, and the blessings that ensued.  In a culture so focused on physical well-being and individual power,  I felt compelled to offer balance, to let my story stand as a reminder of the importance of compassion, and communion – that we are more than just physical beings, and that wealth and success are measured by standards unrelated to marketing agendas.

Inflammation on the brain, and a propensity for tiring easily, challenged me to be more efficient with my words, and to use a dictionary and thesaurus.  Some days I would have to look up numerous words, but I was determined.  Losing language was not an option for me, and delivering a clear, descriptive message was equally as important.

As processing information with the fluidity of healthier days was gone, I found reading too steep a hurdle, so instead, I listened to audio books.  My author’s mind became peaked with interest to hear how dialogue unfolded, or description leant itself to understanding:  I discovered a new tool for honing my craft.

Hours spent in isolation left the door wide open to reflection – I became a deep diver in the realm of introspection, questioning the whys and wherefores of everything that had been, was, and could possibly be.  (Insomnia contributed quite a bit, also.)  I felt like I was walking a personal Camino: a sole crusader on a spiritual quest.

The disease has eased for the moment, and while I am able to be out of bed for longer periods of time, writing has become an essential part of my day.  I view it now, not as a selfish activity, but as self-preservation:  it is the gift I give to myself.  Ironically, in the midst of great loss, I have found renewed purpose, direction, and hope for a passion formerly stifled.  Illness, it seems, is a great teacher.



What I’ve Learned From Trees

This post originally appeared on my One Woman’s Quest in July of 2014 – just months into my journey with ME/CFS.  Now approaching fifty-nine, I find comfort from the words written during such bleak times.  The earlier post that is referred to is entitled “As A Tree”.

One Woman's Quest

Meditating on the majestic beauty of the trees outside my window, I come to recognize something about myself. I cannot help but think that even though they are symbols of quiet strength, trees are not without their own vulnerabilities. Acts of Nature, or even human folly can bring them down, and so they, like me, are not immortal.

th-3Perhaps none of us is meant to be an impenetrable force: the kind of force I aspired to in my youth.

You see, I always thought of myself as a strong woman, however; unlike the trees I contemplated in my last post, I was not flexible – bending graciously to the winds of change – but belligerent, resistant, and arrogant. I was a right fighter. Having grown up in an atmosphere of relentless uncertainty, I commanded myself to be strong, believing that with an iron will, I could gain control of life…

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A Glimmer of Hope

“Was I right about the doctor?”  the middle-aged receptionist asked cheerfully as I emerged from the examination room and waited for my next appointment.

“He’s very good,” I agreed.  I had hesitated to see one more specialist after a history of dead ends trying to get a diagnosis for what was clearly something wrong with my body.  I shared my concerns when she called to set up the appointment, and she reassured me this doctor was different:  caring and thorough.  He was both things.

“I know what you mean, though, about being frustrated with doctors.”

“I have been trying to explain it to my husband,”  I told her.  “It’s different for women than men.  I was told by one doctor that I was just oversensitive and by another that there was nothing wrong me, just because he couldn’t find anything.  It’s humiliating.”

A woman in a nearby examination room stuck her head out.  Roughly my age, she nodded in encouragement.

“I really saw it when my husband got ill.  Doctors were all over him, ordering tests, checking up on him with follow ups.  No one questioned his concerns.  We women are not taken seriously.”

The examination room lady gave me a thumbs up.

“Well, this guy is different,” the receptionist repeated.  “He’ll get to the bottom of what’s going on.”

I hope so, I thought to myself all the way home.  I could use some light at the end of this tunnel.