The Picture of Health with ME/CFS

A few days ago, I received a newsletter in my email that informed me that today, May 12, is National Fibromyalgia  Awareness Day. Who petitions for or decides on something like that? The federal government? The CDC? A board of physicians (I doubt it)? One physician (maybe)? Hallmark? Anyone? Anyone? Bueller?

I suppose “awareness day” is quite different than “national holiday” and I wonder how many “awareness” days fill our calendars and to what gain.

**** Pause. When I sat to write this post, I didn’t know the opening would take this tone. So, I’m sitting still thinking, “Yikes, where did THAT come from?” ****

Maybe from here. Ten years ago I woke from a simple 45 minute surgery a changed person (I now presume the anesthesia was the culprit). Over the next four years my life was stripped of :
- sharp cognitive function
- physical abilities I had enjoyed, without thought, for years (gardening, power walking, yoga)
- my job, as my energy was unpredictable (and could go missing for weeks) and my cognitive function was dismal
- my home, which I could no longer care for and the stairs of which I could no longer climb
- my 26-year marriage (my former husband surmises our marriage ended because I now start my day so late – the crack of noon to be precise, quite typical of a person with this condition)

Until the day of that surgery, anyone who knew me would have characterized me as a “type A” personality. I thought fast, I talked fast, I moved fast. I got a lot done in a day.

After the surgery, I couldn’t remember the names of dear friends, I had the speed of a slug, I had the energy of….whatever has NO energy. It took me nearly two hours to shower, since I had to rest so often throughout the process (the washing process…the hair drying process…the dressing process) – things I had never thought about as “processes” in my prior healthy life.

What frustrated me the most was that my legs had gone dumb and heavy – not weight-heavy (to the contrary, I was losing what precious little weight I could afford to lose), but unresponsive heavy. I felt as if I were dragging them around rather than that they carried me, without thought, to wherever I needed to be, as they always had in the past.

I saw no less than 20 medical doctor specialists. At first my condition was thought to be MS, then lupus, then Lyme disease. Maybe it was rheumatalogical, they’d say, or maybe some other auto immune condition. Or maybe, my favorite doctor surmised, “It’s McAvoy disease” – my own unique physical decline.

I was constantly exhausted. And by “exhausted” I don’t mean super tired. I mean that there was zero energy in my body. No gas in the tank. Nothing. I often felt as if I were evaporating, that the molecules of my being were dispersing like vapor — there was no core engine holding me together and at a steady idle. To breathe was an effort. To sit upright was an effort.

I couldn’t think, I couldn’t sleep. My life, as I’d known it, was slipping away.

One day, about three years into my undiagnosed condition, my primary care doctor asked me if I’d ever heard of “fibromyalgia”. He said this “f” word in a whisper. I couldn’t understand what he was saying, so I asked him to repeat it. He did, still in a whisper. Whatever he was saying was not familiar to me. His whispering, I later realized, came from his feeling that he was saying a bad word in the medical community. He didn’t want his colleagues to hear him use the “f” word. When pushed, he said it loud enough for me to sound it out and later research it in the privacy of my home.

It was another year or two before I was definitively diagnosed with fibromyalgia and chronic fatigue. This lag in diagnosis is typical, as typically physicians considered the symptoms of this condition (from which some men suffer, too) “female hysteria” or “yuppie disease”. I think the same physicians would put childbirth in the same category, if not for the fact that there is evidence of childbirth in the real presence of an infant after nine months of what they would probably consider hysteria. Ditto menopause, but for the blood work they can now count on to validate treatment.

Fibromyalgia, or whatever you choose to call it, is now presenting with evidence of its existence in brain imaging. So, western doctors, who are scientists more than they are healers (my opinion) now take note of it. And, as well, there is so much money to be made (by all parties involved, except the patient) in the prescribing of a wide range of medications (where the real rubber hits the real road in real, modern, western medicine) that to treat patients with this condition is becoming a no-brainer for the business-driven acumen of many physicians.

For ten years now, I’ve had fibromyalgia/CFIDS (chronic fatigue immune deficiency syndrome), or ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) as it’s now being called. And, yes, I have a serious attitude about how my health was “managed” for the first six years I was treated by the medical community  - which treated me as suspect, cuckoo, as if exhibiting hysteria, playing the system, looking for drugs, etc.

Long ago, I stopped expecting the medical community to help me, and my new sensitive system could not handle the medications they continuously prescribed. My greatest relief from the pain and stiffness of fibromyalgia and the exhaustion of chronic fatigue comes from an “alternative” treatment, Network Chiropractic (sorry Pfizer), a light touch form of chiropractic practice that helps balance the sympathetic and parasympathetic neuro-pathways. And I found inspiration from such people as Stuart Murdock (of the music band Belle and Sebastian) who had CFS at a young age (and for the most part, overcame it) and Laura Hillenbrand (author of Seabiscuit: An American Legend and Unbroken: A World War II Story of Survival, Resilience and Redemption) who has lived with an extreme case of CFS for more than 25 years.

It was ten years ago that I first experienced the symptoms of ME/CFS. It was debilitating for six years. But in the past four years, I have found a balance in my energy output and energy reserves. The excruciating pain that defined the start of each day is less acute, though still defining. I don’t put anything on my calendar before 12:00 p.m. My days get off to a slow start, though, typical of many with this condition, my alert and energetic (a relative term) time of day is late afternoon/evening.

Always an optimist, I see the upside of having lost the robust health I enjoyed until mid-age. I am an accidental writer because of ME/CFS. When I could no longer reliably keep the hours of the employed, I fell back on a basic skill that I could do as focus and energy allowed. I am an accidental photographer because of ME/CFS. When trying to “exercise” (i.e., walk at a slow pace on a flat surface – around a pond in my neighborhood) I decided I would take photos of what I was seeing, and then was born SilverLining (my photo blog) and MaryMcAvoy-Photography.

ME/CFS falls into the category of “invisible” illnesses. Like MS and other auto immune conditions, the person with ME/CFS is often healthy looking. This lends to the difficulty people (doctors included) have in understanding the degree to which this condition can impact a person’s life.

I now live the hours of each day with conscious deliberateness – I appreciate anything I’m able to do, as there have been many days when to simply rise from my bed has been a Herculean effort. But rise, I always do.

It’s Friday night, and I’m struttin’ my 17-year-old stuff across the dance floor of my highschool gym, as psychedelic trippy lights beat with the band.

These guys bring it all back. This sound is retro awesome.

Don’t believe me!?  Watch this guy dance my dance to The Black Keys “Lonely Boy” - and see some great 70′s inspired dance action!

My heritage is nearly completely Irish – just one Englishman in the mix. My paternal great-grandfather was a young English immigrant who married an Irish girl with whom he fell in love on the boat to America. He worked in a hat factory in Haverhill, Massachusetts, and died in his early 30′s from exposure to the dyes, which contained lead. His baby son, my grandfather, was sweeping bar room floors at age five to help his mother (who took a factory job) support their little family of three, which included another baby boy. As my grandfather got older he sang in the bar rooms, too. He worked hard, saved money, and put himself through medical school.

Life was a lot easier for the next two generations because of my grandfather’s drive.

Tonight an email came to my inbox from my two brothers in charge of my mother’s will. My mother died in November, seventeen years after my father. The time has come to disperse, from east coast to west and points in between, the accumulations of their lifetime, including heirlooms from their parents. The email came in as I was sorting some of my photos and, as it’s St. Patrick’s Day, listening to Eric Clapton’s version of Danny Boy.

I am to receive, through my mother’s will, among other things, a porcelain statue that was given to my Irish mother when she was five-years old and recovering from scarlet fever. In her home city of Lawrence, Massachusetts, German neighbors came by and gave her a porcelain figure of a little black boy, who became her only friend while she and her home were quarantined and she slowly regained health. The statue remained on a shelf in my mother’s room, wherever she lived, her whole life.

Betty Smith, the author of A Tree Grows In Brooklyn, was born Elisabeth Wehner. She was the daughter of German immigrants. The main character of A Tree Grows In Brooklyn, Francie, is the daughter of an Irish and an Austrian immigrant.

My grandfather, the bar room sweeper/singer, married an Irish girl from Brooklyn.

Can you feel the mingling of reflections that prompted me to write this post, and on St. Patrick’s Day?

Here now, listen to an Englishman play an instrumental version of what has become a traditional Irish-American song (though it was written by an Englishman):

- Eric Clapton’s Danny Boy.

Ayer Mill Clock Tower - Lawrence, Massachusetts

I’m putting the finishing touches on a slip of a book (21,000 words) and will be uploading it to Amazon’s Kindle digital publishing, KDP, in the next week.

The book, The Setting of the Sun, tells a story about love – and love’s power over death. Because the love I saw between my maternal grandparents inspired the story, I chose their home town, the city of Lawrence, Massachusetts, as the location of the story. My grandmother, like the main character in The Setting of the Sun, was born in 1898. Lawrence was a thriving mill city at that time – a planned city (designed by the Essex Company), which sits on the shores of the Merrimack River, from which the mills drew their power.

I did a small amount of historical research for this work of fiction. But I also grew up in a small town a few miles from Lawrence, so some history of the city was sort of innate to me.

My mother was my first editor for The Setting of the Sun. Educated in the solidly good Lawrence school system of the ’20s and ’30s, she had a strong grasp of English grammar. We had no idea at the time she was editing The Setting of the Sun that she’d be gone from this life within a year. I’m so glad now that as she edited it, she saw that I had dedicated the book to her.

My whole life I’d taken for granted that I could see the Ayer Mill Clock Tower in Lawrence from the top of the hill I lived on in my hometown, which neighbored Lawrence. My eyes were also quite used to seeing the clock tower loom over Lawrence as I drove toward Rt. 495 when taking the highway north or south.

But as my mind visualized one of the final scenes in the novel, the clock tower took center stage. Its significance in the geography of the city, as a symbol of the once mighty mill city, and in representing the passage of time – the Ayer Mill Clock Tower became a natural symbol within the story I was writing.

I’ve incorporated into the book jacket a Photoshop sketch of a photo (above) that I took of the clock tower in July 2010.

I know this is a rambling post…but what I want to get to is that today I was poking around on the Internet, reading about the Ayer Mill Clock Tower. I found a wonderful article (written in 1998) about the keeper of the clock at that time. It’s a delightful and informative read. If you’ve seen the movie Hugo, it will have even greater impact.

Enjoy!

February is the month of love! On Valentine’s day give the best gift, the gift of love!

Love is a theme in all of my books, whether it’s romantic love (as in Love’s Compass) or eternal love (as in The Setting of The Sun) or infectious love (as in Love, Topaz).

To celebrate love during the month of February I’m offering three promotions within Kindle sales of Love’s Compass. With these offers, I hope to spur on love!
-  For the month of February, Love’s Compass is priced at $.99 (99 cents!) per Kindle download of the book at Amazon
-  From February 10 till February 14, Love’s Compass is FREE per Kindle download of the book at Amazon
-  For the next 90 days, Love’s Compass is part of the lending library on your Kindle

Right now, only my novella Love’s Compass is available through Kindle. Within a month, The Setting of the Sun will be available on Kindle, too. This (my second novella) chronicles one day in the life of a 95-year-old woman as she attends the funeral of her husband, to whom she’s been married 75 years. As her aging mind wanders – through memory, the present day, and thoughts of the afterlife – we come to know her and the love she shared with her husband.

By the fall, the much-anticipated and hugely fun full-length novel Love, Topaz will be available on Kindle! In this mad-cap love story, watch neurotic Jerome (a writer) sneak his love (and muse) Topaz into his one week stay at a writer’s retreat. Is it possible that the love-filled, nymph-like Topaz is containable in one room? No! Readers will laugh, cry, and sigh “Ohhh…” as Topaz’s love permeates her ever-growing environment during her week’s stay within the room, throughout the retreat house, and ultimately, spilling into the small, sleepy town. Watch the icy heart of horror novelist Marlene melt as the love of one mismatch-of-a-man wins her heart. Will Topaz’s presence jump-start the stale marriage of the once hippie couple who run the retreat? You’ll see….!

As I market the works above, I’m at my desk with my author cap on, busy writing a novel that’s a bit edgier. In this story, readers will see how one act that is absent of love – an act of intolerance and rage – so injures the psyche of several individuals that recovery for any seems impossible. Told in the voices of each character, the heart of humanity is exposed in raw forms. Can it repair? I hope so.

Think thoughts of love, every minute of everyday -

Great Blue Heron

As the initial days of 2012 unfold, I’m taking stock of my creative energies and devoting time to marketing my writing and photography.

I’ve established a site at Fine Art America where my photos are available in various canvas and framed options. I’m really excited about this venue! Already I’ve had viewers from across the U.S. and around the world!

Stop by the FAA sometime and see all the amazing work by an array of talented folks!

My mother, 2009 (photo by me)

I had this dream the week after my mother died -

She stands at the center of the living room, large open boxes and her twelve young children surrounding her. They know she’s sick. She knows she’s sick. They all know this moment is a gift. She’s beautiful and young. Her hair is dark. Her skin is pale and her face serious. She’s wearing a red knit dress. It hugs her and shows how frail she is. She reaches into a box and with a slender, weak arm she lifts an ornament and hangs it on the Christmas tree. Her children giggle and whisper their delight to each other, “Look at her, she’s up, she’s here.” They tuck their arms to their chests in self hugs and, in happy disbelief, they press their knuckles to their smiling lips. Implicit in each disposition, hers and theirs, is that she will soon be gone – this moment is a miracle. The children know this is their Christmas gift. Nothing could make them happier.

******************************************************

She was their sun and their moon -
their north, their south, their east and their west.

She was the sparkle of light through a drop of morning dew.
She was the scent of ocean in the air, a “sea turn” she called it.
She was the refreshing first sip of her iced tea on a hot July day.

She was the twinkle of the Pleiades and all the stars of a dark night sky.
She was the mystery of the sun spots she recorded through her telescope.

She was the cool air on their bare legs as they ran through the yard.
She was the thrill of burning piles of just-raked fall leaves.

She was the heartbeat beneath their hand as a flag passed on Memorial Day.
She was the innocence of the Christ Child and faithful to the Savior Christ.

She was the old oak tree that now lives on without her.

******************************************************

In the end, we lost our footing on a downhill run.
It came on fast, and though we tried to out-pace death, we landed in a heap, startled and dazed.
When we’d gathered ourselves, she was gone.
Our hearts are broken. 

Mum and me, 1957 (photo by my father)

But being together was natural enough that we just chatted not aware anything were amiss. After about ten minutes, when there was a lull in the conversation, my son asked, “Is anyone having trouble with the internet?” Simultaneously, my daughter and I said, “Yes!” And immediately we laughed, knowing that for each of us, the trip to the kitchen was a snack break while we suffered through the frustration of not being able to get online. We all realized, and verbalized, how sad it is that we have become this way!

Through the years when my children were young, our home had a large L-shaped kitchen. It seemed as if the rest of the house were superfluous, needed only for bathing and sleeping. I know we each thought of those times today as we recognized our current style of living. And how almost pathetic we said, that a blip in the internet service was the impetus for our togetherness moment.

Note to self:  plan a family dinner soon, just like we used to have, every day, in the old days! Chicken nuggets, anyone?

A co-worker suggested I try Rework, by Jason Fied and David Heinemeier Hansson. This fast-paced read challenges marketing strategies that have been the platform for modern business for decades. It’s a refreshing look at how ingenuity should be brought to market. I’m enjoying it.

Alongside these work related books, I’m reading Pilgrim at Tinker Creek, by Annie Dillard and Twelve Moons of the Year, by Hal Borland, both gifts from someone who appreciates my appreciation of nature.  I hope soon to begin work on converting my nature photo blog, SilverLining, into a book. I’m reading these books to inspire that endeavor.

There’s not a grand point to this post. Actually, what got me thinking about writing it was a thought rooted in Annie Dillard’s writing, that I found myself mulling over as the sun set beyond the forest of trees that are out the windows that are across the room from where I sit at my desk. Writing the introduction to the post got me side-tracked about the books I’m reading.

So, here’s the thing I was thinking about. In the initial pages of her book, I think Annie Dillard is setting up the reader to be aware of visual perception, so that we are prepared as she shares her mentally challenging (to the reader) perceptions of the natural world. As an exercise to stretch our understanding of the brain’s interpretation of sight and depth perception, she tells about the first life-long blind patients of cataract surgery and their initial reactions to having sight. In more than one instance, the newly seeing patient describes vision as blotches of color – the implication being there is not yet meaning in what the blotches are. Equally interesting is the expressed idea of these patients that the color is immediately before them – there is no distance between them and the “colors” – which are objects known to life-long seeing people. So the net effect was that when these people walked, they perceived the colors as parting, as giving way to their passage – kind of like the way we displace water when we swim through it.

Anyway, my random thought that caused me to post today, was that I found myself sitting here picturing myself passing through the palette of colors before me - across the room and out the wall of glass, and over the deck and into the air that leads to the woods and on toward the setting sun, all without bumping into anything, as if molecules could absorb my being and carry me through and into the infinite sunset. This was the perception of the once blind - the perception, as Annie points out, of every newborn. I believe she challenges us to consider if we construct our own constraints.

2010 – a long year,
unraveling twenty-six
that ended on the 13th
in December

The afternoon sun came in low through a window and illuminated and made shadows on a wall of objects on a chest in a corner. Christmas decorations sat in temporary place while the chest itself and a lamp and three framed paintings held the scene’s unchanging structure. Through the lens lines were aligned and varied positions were tried to use the light before it faded and the shadows were lost. Four good pictures were stored on the disc. The urgency of the moment passed and the sun faded.

What of these things, when looked at later, became more than the photos themselves? What realization made the images more than the light or the shadows or the objects or the final arrangement of the colored pixels? 

He would take the chest – it was his uncle’s – and one-half of the Christmas decorations. She’d keep the paintings – done by her mother – and the lamp. The walls would be sold.  All the walls would be sold, and the doors and the windows, and the upstairs and the downstairs. The profit, or loss, would be split – 50/50.

What had happened? What made it unravel? A twist of fate? Or a slant of light?