me/cfs – Page 8 – One Woman's Quest

Harmonics

6:30 a.m. alarm sounds.
“Time to wake up!” conditioned Compliance commands.
“Just a little longer,” Sensibility suggests.
Guilt, like an incessantly annoying child
tugs on Conscience:
“Come on, there’s lots to do!”
Body does not respond.

Sleep wins
and dreams come:
homeless,
relying on friends,
no food,
backed up toilet,
children’s wide eyes fearfully imploring
When is this all going to end?
Guilt propels a return to consciousness.

8:25 a.m.
“Up and at ’em! There’s a good soldier!” Compliance attempts to be chipper.
“There’s really nothing more important than rest,” Sensibility suggests.
“Can’t lie in bed all day!” Guilt counters.
But body is MIA.

Dreams surface again:
Setting up house in a thoroughfare,
people coming and going, oblivious to intrusion,
co-workers indifferent,
eyes scolding; convicting.
Guilt mutates to rage,
Body wakes up with a choking cough, and gasping,
reaches for the rescue inhaler
and sucks in, desperate for air.

11:11 am.
“That’s it! Up you get!”
“No! No! Rest is needed!”
“The day is wasted! There’s no getting it back!’

“SILENCE!” A new voice emerges.

A collective intake of breath.

“Breathe,” comes the message. “Just breathe.”

A unified sigh.

“And breathe again.”

Tempers cool, and emotions begin to settle.

“What’s going on?” Guilt wonders.
“Just trying to stick to routine,” Compliance explains.
“It’s always been this way.”
“But she’s ill now,” Sensibility adds, “and there needs to be concessions.”

“Breathe,” the voice reasserts, and all sigh again.
“Just be in the stillness of the moment.”

Stillness has no voice.
Its language is compassion and infinite,
infinite wisdom.

“And surrender.”

Compliance sobs with the release of such enormous obligation.
Sensibility gratefully gives over the burden of responsibility,
and Guilt…..well Guilt is little,
and happily snuggles up to Unconditional Love.

“There, there,” Voice soothes, “isn’t harmony so much better?”

Body concurs and rises out of bed.

Day 216 “Living with the Unknown”

“We don’t know what causes this illness, and there is no cure or course of treatment other than management, and that is mostly trial and error.” It is the standard answer from all healthcare providers when it comes to ME/CFS.

“I am flat out frustrated,” I tell my therapist. “I can’t seem to find a regime that works. I can have one or two good days and then, wham, I am knocked down for no apparent reason.”

“That seems to be the way with this disease. How are you managing emotionally?”

“Okay, mostly, but on the worst days I find myself always on the edge of tears.”

“There is a grieving process that accompanies a diagnosis of chronic illness, you know. It has to do with the loss of your normal life, and all the things that go with being healthy.”

“This feels more like fear. I know it’s irrational, but this feels very much like fear.”

“Are you afraid you’ll never get well again.”

“Nnnoo…….I know I can do that – I’ve gotten through worse before. It’s just….it feels almost as if it’s coming from an old place – a younger me, if that makes sense.”

“It does actually. Whenever we are hurt or vulnerable, we often respond from a wounded part of ourselves, and that usually relates back to childhood. How old does this make you feel?”

“Nine!” I respond immediately. “I can see me, sitting in the corner of my childhood bedroom. It was my favourite hiding place. I spent hours and hours there as a kid.” Wishing someone would come find, but they never did, I remember to myself.

“Can you talk to her?”

Little Me sits with her knees drawn up tight, arms hugging them to her, eyes wide open and hyper-alert.

“What is it?” I ask.

No one will want us, her fear says.

The emotion hits me violently. She was told over and over again that she was an unwanted burden. “Unwanted” is the key word. We can handle any other pain than that.

“We have a burden complex,” I tell both her and my therapist.

Both nod, but Little Me’s terror and tension doesn’t ease.

“Go on,” urges my therapist.

“A burden is something, not someone,” I explain. “You are not a burden. You are a child, and by that fact alone, you have certain rights – birthrights – among them the right to have your needs met, the right to be looked after and cared for, and the right to be loved. NOT: You have to earn these rights! NOT: You are unworthy and therefore undeserving! You exist, you are born, those are your rights!”

My therapist nods throughout, and more importantly, I see Little Me is listening, and her shoulders have dropped a bit.

But Mom says…., she begins.

“I know what your Mother tells you: Don’t wear out your welcome. All she means is be polite and stay a reasonable amount of time when visiting your friends. She is not commenting on your likeability.”

Really? What is a reasonable amount of time?

“Discreetly leave before supper is ready unless you are invited.”

“Yes, yes,” the therapist nods.

Little Me considers this. Then why does she rush us off to bed at night as soon as Dad gets home? Isn’t it because we’re a burden and she doesn’t want to remind him?

“NO! It has nothing to do with that! I cannot emphasize this enough! It is something you will understand as an adult, but for now, know that you being sent to bed is your parents’ issue, not yours!”

What about Thor? Won’t he find us a burden and leave us?

“Ahh!” says my therapist warmly.

I feel my throat catch and sigh. “Some things in life are uncertain.” It’s not like I haven’t thought about it. How do I begin to address this? “We have many things that Thor is looking for,” I offer. “Last year, we looked after him. We are patient, loving, and good listeners. These are important to him. He is wounded too, you know. He needs reassurances. Our insecurities will push him away more than anything, especially if we pretend not to have any.”

The truth of this last statement hits me. Little Me loosens her posture and now looks at me quizzically. Confession time.

“One of the things I have done in my life – right or wrong- is to develop a tough exterior. It hasn’t always served us well. Much like our Mother sending us off to bed early, I did it as a form of protection.” I pause to feel the weight of the revelation. “It doesn’t work anymore.”

The silence from within and without encourages me to go on. “Part of my healing process – our healing process (I add for Little’s sake)- is to replace that characteristic with a healthier one.”

What will that look like? Little Me echoes my therapists thoughts.

“Not entirely sure, but I know how it will feel: safe enough for you to come out of the corner and engage with life. You, we, have a lot to share, and we can’t do it when we hide ourselves away.”

I am strangely comforted by this conversation: lighter. “I have my homework cut out for me,” I tell my therapist.

“You do! But this is a good start.”

“Life is full of uncertainties,” I tell Little Me, on our way home. “Some good, some bad; it’s just the way it is.”

Kinda like an adventure?

“Yeah, it kinda is!”

What I’ve Learned From Trees

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-3 Perhaps 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 – not just my own, but the lives of those around me. I adopted an air of superiority – pretending to know better than anyone else – even though on the inside, I never measured up. Showing vulnerability was never an option. Instead, I must have appeared the fool, and undoubtedly hurt many others.

True strength, I realize now, comes in retreating in the face of adversity, and the willingness to see beyond personal righteousness. It involves an openness to understanding alternative perspectives, and the wisdom to perceive the truth underlying the turmoil.

th-4 My current life circumstances have brought me limitations: physically and mentally. My awake and energetic times are severely restricted. I am challenged to create a new definition of self, and what it is to be strong.

I dreamt of my dear cousin Bev last night. Bev passed away recently after battling cancer for ten years. In all those years she faced her struggle with a quiet strength: maintaining her outer poise, surrendering to the times of severe illness, and establishing healthy boundaries. She was a model for gracious living. Truly a strong woman.

Illness has brought me an opportunity to retreat for a while. It is allowing me the possibility of real change: measurable change. In surrendering my old sense of self, I will surely emerge new.

In the meantime, I remain open and vulnerable – not comfortable – but then at fifty-six years of age, I am well rooted. Like the trees.

As a Tree

Confined for hours at a time to my bed, I cheer myself by contemplating the trees outside my windows. There is something in their stoic beauty that both calms and inspires me.

Be as the tree a former meditation instructor taught me.

If I were a tree
my roots would run deep into the earth
and spread in all directions
grounding me.

Present.

My trunk would be wide and solid
weathering all storms
supporting other life
a tower.

Strong.

My branches would reach up to the sky
and dance with the breezes
and bend with the changing seasons
and bow to Nature.

Flexible.

If I were a tree
I would be calm, yet strong;
have heightened awareness, yet be rooted in reality.

I would yield to change,
yet stand proud in my own existence,
growing with grace.

If I were a tree
I would live in harmony
with Nature.

Present, Strong. Flexible.

Fully alive.

(Image from: www.nbcdfw.com)

Day 208 “Undivided Attention”

Undivided attention.

Two words that brought me hope as a parent and caused me a deep sense of guilt.

I just had to talk on the phone in the presence of my children to know that it was my attention they wanted, without any distractions, and I knew if I could deliver that, they would behave. It gave me hope.

In reality, I had three children, four and under, and a house to run, and a job on the side, and a husband that was never present, and a family who perpetuated drama – not to mention a desire for a life of my own- so giving the children my undivided attention seemed like an impossible task and caused me enormous guilt.

I was never good enough in those years. (Is this every mother’s lot?)

Then, as a teacher, I realized that my students, like my children, were starved to be seen and heard, and I strived to give each one my full attention, if only for moments at a time, but it was never enough and I felt inadequate.

Now, challenged with this illness and unable to give much of anything to anybody, I realize that it is I – my body/mind/spirit – that needs me to be fully present and aware.

It is no longer okay to feel not good enough.

Guilt, you have no place here.

I am learning all over again about the benefits of undivided attention.

Day 200 “Milestone”

I am travelling the country, stopping in towns where tragedies have occurred and visiting the local high schools where I recruit teens to start up volunteer work; doing good to right the wrongs their communities have suffered.

At some point in the dream, I wake up, and conscious of the theme of the dream, think about my own high school students and the community we live in. I think of a senior student, who suffers from ongoing depression and anxiety, yet gets involved with her peers and focuses on helping others. Recently, a piece of her writing was published and she was nominated for an award.

The topic of today’s reflection is milestones, and when I look at my granddaughters I see how each step in their progress is monumentous: a celebration. And yet at some point in our lives, the milestones become less about the miracle of growth and more about the passage of time – or in my case, a reminder of the end of time.

I was asked recently to speak at another School Board, several hours from home. Given my recent health status, it seemed logical to turn it down, but something inside me stubbornly refused to decline. The dream says it all. No matter what the catastrophe we have suffered, we need a purpose to keep going.

As a teacher, I strive to see the good in each and every one of my students, and focus on that, not ignoring their challenges, but offering a steady perspective of possibility.

At this stage of my life, I need to offer myself the same and mark this milestone in my life as a time ripe with potential and not an ending.

First Glimpse Of ME/CFS

Hesitantly, I turned the key in the lock and pushed the door ajar. A waft of warm, stale air accosted me.

“Hello?” I’d been told there might not be a response.

Something was resting against the door, so I pushed harder to let myself in. The beam from the light of the open doorway was thick with dust and it took a moment for my eyes to adjust to the darkness. I was walking into a little foyer, with stairs ascending to the main level. The walls on either side of the entrance were stacked high with boxes, and laundry baskets full of stuff. Something lay on the floor at my feet – a coat, or a blanket, I couldn’t tell – the object of resistance. I stepped over it and closed the door behind me. The smell of the place accosted me then, a smothering aroma of dust, and cigarettes, and cat fur. I wondered what I had gotten myself into.

“Hello?” I called again, more desperate for a response. None came.

She’ll be in the bedroom, at the end of the hallway, her mother had told me. She likely won’t awaken.

It was the middle of the day, but dark blankets covered the windows, allowing for minimal light. I waited for my eyes to adjust before climbing the steps to the kitchen. The rows of boxes and debris continued and flowed into the kitchen, where dirty dishes and takeout containers littered the counters and floors. Who could live like this?

I felt my way along the hall, carefully stepping through the hordes of items stashed there, until I reached the last bedroom.

Politeness made me knock again. Again no response.

The situation was worse than I thought, and I seriously doubted my ability to be of help. It all started when she was seventeen, her mother told me. She had a terrible case of the flu, followed by encephalitis, and then one thing after the other. She rarely gets up, and has trouble putting a sentence together. The doctor’s have given up on her. She hasn’t been out of the house for ten years, and we can’t get anyone to go in. We’d really appreciate if you’d go see her.

Two tabby cats greeted me as I opened the bedroom door, as did the fetid odour of a litter box. Shooing them aside, I approached the bed. Rumpled bedding was tangled up in the middle of full size bed, but no sign of any thirty-three year-old woman. Now what?

I decided she had to be somewhere within the mess of sheets and bedding, so centering myself, I began. I ran my hands just above the bed, hoping for some sense of heat, or thickness, that might indicate there was a body inside. Instead, I just felt foolish. So, I stood at the foot of the bed and took some deep breaths, re-centering in hopes of some divine inspiration.

“Well?” A thin, croaky voice emerged from under the covers.

“Hello,” I said again, beginning to feel like a parrot.

A thin, waif-like hand appeared, followed by a matted head of hair. She was tiny. “Any hope?” her voice sounded as if it was coming from under water: slurred and thick.

I was at a loss for words. Here was this wisp of a woman, holed up this house with no daylight, and no fresh air, locked away from humanity, and all I could think of was how could she possibly survive. I would have committed suicide long ago if it had been me. What could I tell her about hope?

Then I remembered something both Joan Borysenko and Bernie Seigel had said during their workshops: There is something to love about everyone. Find it and you can help them.

“Yes,” I said. “I believe there is.”

“Really?” The word came out stretched and squeaky.

She had survived this long. She had beaten odds, and continued to live. It wasn’t much of an existence, but something kept her going.

“You have an incredible will. Now, you just have to learn to channel that to get better.”

* * * * *

Patty’s story is for another day. Meeting her taught me the importance of an idea that works. There is something to love about everyone. I use it everyday in my teaching practice.

(Image: www.experiencewellness.co.uk)