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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Maybe

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

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.

(Image: http://www.gettyimages.com)

 

 

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.

(Image: startsat60.com)

On Acceptance and Illness

“Grandma, when will you be better?”

It is 5:00 on a school morning, and I am sitting at my granddaughter’s bedside nursing her through a sore tummy.

“Not sure, Honey.”

“Oh,” she shrugs.  She is four and has never known me any other way.

Later, we snuggle up and watch Moana. 

“You are just like the Grandma in the movie,” she tells me.

“Because I have white hair?”

“Yes, and …..”  it is at the part where Moana’s dancing Grandmother says she’s the village crazy lady…” that too.  Will you come back as a stingray when you die?”

“More likely a bird,”  I tell her.

I love that while she is not afraid to ask questions, she is also accepting of the answers.

“I miss you,”  my mother tells me every time she talks to me.

“It’s like we’ve lost our Mom,”  my daughters remind me.

I know my husband pines for the old me, too.  Hell, I am in agreement with them all, but dwelling on the loss is counterproductive to healing.

ME/CFS is a bit like having the flu, only those days where you begin to feel better are not harbingers of a return to normalcy,  they are tricksters, stirring up false hope and an overuse of energy.  A crash is certain to follow.

Apart from the daily physical challenges, I taunt myself with a barrage of ‘shoulds’  illiciting emotional turmoil.th-1.jpg

I need to borrow a page from my granddaughter’s life book:  to know that I (Grandma) am sick and have limitations, and love me anyway.  She has no expectations for me to be any other way than how I am.  Imagine being that emotionally mature, or should I say, innocent.

Acceptance says:  this is my life, this is who I am.  Wisdom reminds me that life is seldom static, so chances are that things will change again.  Openness will help me transition from one stage of life into another.  It also keeps possibility alive.

Without acceptance, I live in a constant state of never being enough.  I think I should do more for my children, be a better daughter, push myself for my husband’s sake, accomplish more.  In other words, I am constantly facing a mountain of insurmountable  goals.  th-2

Acceptance would gift me with the power of no:  the ability to recognize what I am and am not capable of, and the courage to set realistic boundaries.  Acceptance seeks to understand without judgment.  It is a shift in perspective.

Imagine being able to find joy in the moment, without the cloud of self-chastisement.

I believe acceptance can give me that.

“Grandma, I want to come sleepover at your house,”  my granddaughter tells me as I leave.

th-3I hug her and tell her: “Soon”, and marvel that she wants to spend time with a doddery old woman like me, and think:

If a four-year-old can accept me the way I am, then surely I can too.

 

 

 

 

 

 

 

“I Swear I’ll Make It Up to You”: A Review

Explosive, sometimes irrational, anger is a steady companion of addiction.    Anyone who has lived with or been an addict will recognize the pattern played out in the pages of Mishka Shubaly’s memoir :  I Swear I’ll Make It Up To You.

Shubaly holds nothing back in the telling of his story, subtitled:  A Life On The Low Road.  The rage that spews forth is acidic, and at times, difficult to stomach, however; this is a missive about more than inconsolable pain:  it is a message of hope.

As I often do, I listened to the audio version, in this case read by the author.  His voice is rough, and gravelly – a testament to years of self-abuse – and the narration raw.  There were moments when I questioned my allegiance to Shubaly’s tale, and yet, I persisted, a choice I did not regret in the end.

Shubaly’s personal account reflects many universal truths:  the damage created in divorce; the dark side of drugs and alcohol; and the power of the human spirit to overcome adversity, no matter how daunting.

The relationship (or lack of relationship) Shubaly has with his father resonates deeply with me, especially when he realizes that his perception of events leading to their estrangement was built on misunderstanding.

I Swear I’ll Make It Up To You is a reminder of the complexity of human relations, and a promise that life’s journey is seldom predictable, and always worth the effort.

 

 

 

Still Loving My Doc

thThe challenge, when dealing with a chronic illness – in my case ME/CFS – is staying positive.  Momentary improvements in health are toppled by extreme crashes.  It’s like living in an eddy where, every once a while, the current quiets and it feels as if there might be an escape, and then the weather shifts and the spinning pull gains force.

When I presented at my doctor’s this week, I felt like I just didn’t have the psychological fortitude to keep going.

The doctor I’m referring to is not my normal family doc.  Dr B is an MD, and anesthesiologist by training, but he has also extensively studied complementary approaches to health care.  The first thing to do when arriving in his office is fill out a two page self-assessment; he then goes over this questionnaire and the medical chart before entering the consult room.

“It’s been a year,”  I say in way of greeting.

“I see that,” he says.  “Let’s review where we’ve been.”  Dr B then proceeds to go over my initial blood results, our earlier goals, what we’ve accomplished along the way, and then he asks:

“So what would you say is your most pressing issue right now?”

I find myself, through tears, blurting out:

“I just have no strength, no energy.  Everything feels too hard again.  When I stand or sit my heart races, I sweat profusely and I just feel so sick.”

I apologize for crying, but he brushes that off and invites me onto the examination table.  He checks out my shoulder, which since the last time I saw him now has a tear for which I’ve received a cortisone shot.  He notes that it’s still frozen.

Dr. B uses muscle testing as a way to determine what the body needs.  My body confirms my sentiments:  adrenal and mitochondrial dysfunction continues to be my top issue.  He explains how this manifests itself – basically describing my struggles.  He prescribes a new regime of herbals and supplements.

Then he suggests some acupuncture for my shoulder.

I’ve been receiving acupuncture for seven years now as pain control, but never from him.  I’m willing to try anything.th-1

One single needle inserted along my left earlobe and my frozen shoulder releases.  Really?!

As he explains the process and the connection, I suddenly grow weary, and in fact, fall asleep on the table.

Nonchalantly, Dr B covers me up, turns down the lights and lets himself out.  Nature’s call awakens me sometime later and I emerge, embarrassed.

“He came out of the office and just told us you needed to rest,” my husband tells me on the way home.  “Asked me if we needed to be anywhere, and I said no.”

One day later and the pain in my right shoulder and arm is still gone.  I can lift my arm, get it behind my back, and reach for things.  I’m still shaking my head in disbelief.

And I’m still chuckling over the fact that I fell asleep in the doctor’s office.

This is why I love Dr. B.

That, and the fact that I feel hopeful again.