Lupus SK Society Inc.

Working together to conquer Lupus - 1 in 1000 persons in Canada have Lupus

A Proud Member Organization of Lupus Canada

SYLVIA HIGGINS MEMORIAL ESSAY - General Category Honourable Mention, 2006

The LESS Board congratulates Isobelle McFadyen on her thought-provoking essay. She has eloquently expressed possible answers to the soul-searching questions many of us with lupus have struggled with. Isobelle is a long-time LESS member and a previous Sylvia Higgins General Essay Award winner.

The Middle Way

"There is in every true woman's heart a spark of heavenly fire,
which lies dormant in the broad daylight of prosperity;
but which kindles up and beams in the dark hour of adversity."
- Washington Irving

(Gentlemen: despite the reference to a "woman's heart", please note that the author is fully aware that 10% of lupus patients are male. And in her estimation, the concept applies equally to all Lupins' hearts.)

Inspired by the Buddha who chose to share his teachings, I made the decision to share what I have learned about the art of living well with lupus, based on insights and awakenings nurtured over the past twenty-five years.

Unlike the Buddha who walked upon the earth in a place now known as Nepal, I did not sit beneath a rose-apple tree awaiting enlightenment. However, in my own way, I did undertake an active, deliberate search for the middle way.

The first ten years following my diagnosis, I read everthing I could find and tenaciously interrogated anyone who knew anything about this mysterious disease known as lupus. Once stabilized, I came to the first of many realizations: feeling miserable was just too much work. And so, I concluded that bad days were ineveitable, but existing in a maze of pure unadulterated misery was optional. Consequently, I set out to find a better way to live with this spectre.

Having wasted far too much time paddling aimlessly about in a pool of cerebrally-enhanced toxic soup, I embarked upon this journey with enthusiasm. Shortly thereafter, insight arrived in the form of one short line in a magazine. The article had nothing to do with lupus and everthing to do with living one's best life. I don't recall the exact phrase, but will always remember the message. Whether you believe you can go on or feel certain you can't, you'll be right either way.

It spoke to me of empowerment. Someone had just given me permission to take charge of my life. Not the life I had known before lupus, but the life I now had the opportunity to live. However, the starkest revelation hit, when I realized who that someone was. It was me. I gave myself permission to stop mourning the loss of a life that would never be and begin celebrating the life that was possible, despite lupus.

With a renewed sense of purpose, I sat down to my computer and headed for cyberspace. What wonders would I find floating out here? What ancient wisdom? Would Zen masters a world away speak to me of a better way?

After a full afternoon and evening of frantically searching, I began to feel disillusioned, not to mention a little frazzled and blurry-eyed. Obviously, this wasn't going to be a simple task.

At four a.m. I awoke with a headache spawned by a night of tossing and turning. Still, when morning dawned, the question remained: how do I kick-start this process?

Feeling totally frustrated, I decided to do what thousands of Buddhists had done before me: continue to search for the answers we are sure to find, if we open our hearts and our minds.

My first Google search of the morning yielded, 23,884 options. "Nurture your resilience gene," one site suggested, making me wonder where that was located in this aching body. "Don't underestimate your resolve," another stated. Clever phrase, but not what I was searching for.

An hour later, I began to refine my search. It was then that I stumbled across a passage that spoke to me on a gut level. It suggested the Zen way meant finding a unique perspective; it encouraged searchers to use whatever creative means was at their disposal to explore the unmapped areas of their psyche – to seek wisdom waiting to be unearthed through poetry, painting, gardening, tea ceremonies... .

Since it was mid-winter on the Canadian prairies, gardening was definitely out of the question, as was a tea party on the back porch. And because I had never painted anything besides the back deck, that clearly left me with poetry, which just happened to be one of my passions. Buoyed by an excitement I hadn't felt for years, I pressed on.

With a cup of green tea in one hand and my favourite purple pen in the other, I began writing. Doodling, actually. Allowing my mind to drift like smoke across a rooftop. Stifling the editor within me, I allowed the words that were popping into my head at a mind-boggling pace to float unflinchingly onto my notepad.

Phrases like: solitude regenerates the soul. Stillness is a lovely kind of hush. Meet the challenge with grace. And then, one of Oprah's famous lightbulb moments struck, as my fingers wrote the phrase that would ulitmately become my personal mantra: maintain your chutzpah by laughing in the face of adversity.

With a million thoughts suddenly buzzing around in my head like a swarm of angry mosquitos, I began to smile as a half-remembered line of an old saying teased the edge of my brain: laughter is music for the soul.

I had no idea what cosmic energy had forced the concept from its hiding place, but I did understand the significance. Laughter would be the medicine I would choose to treat a soul that had been hurting far too long. I would laugh at the woman within me who could never remember where she had parked her car, laugh at the fluffy prednisone cheeks staring back at me in the mirror, laugh at the body that had turned on itself...and on me.

Or could I? Could I find the courage within to laugh in the face of adversity? I had recently read a line in another magazine that kept nudging me as I contemplated my future. The line had been penned in reference to sound financial planning, but when I read it, it had spoken to me of a life plan. To paraphrase, it said that a goal without a plan is simply a wish.

Obviously, I needed a plan.

Start at the root of the problem, I decided. Find a way to minimize the impact of this disease on my psyche. This would mean finding a way to understate the role of the wolf.

Ah...ha. The wolf. The wolf who had darkened the hallways of my home, ripping at my spirit and ravaging my flesh. In the future I would address this enemy by a name that was far less worthy of my respect. In so doing, I would demystify his role and diminish his powers. Henceforth, my wolf would have a name: Little Latin Lupe-dee-lu.

"Now, that sounds a lot less intimidating than systemic lupus erythematosus," I said to no one in particular, realizing this one simple step would assist me greatly in making my soul impervious to my world's decay.

Like the corporation faced with downsizing, I would be forced to re-evaluate and realign my life. Prioritize. Eliminate waste. Address management issues. Yet beyond this, I would face the challenge of laughing in the face of adversity.

Throughout the next few days, I walked around in a mist of uncertainty. One moment, I felt self-assured; the next moment, I felt totally incapable of pulling a workable plan together.

Two weeks later, reality hit. I awoke in a fog, feeling fuzzy, listless and weak; certainly not the kind of morning I would have to explain to anyone with lupus. However, despite my personal dilemma, the phone began to ring. Could I run a few errands for my husband? Could I pick up my sick grand-daughter at the sitter? Could I chair the next community fund-raiser? Could I? Could I? Could I? Could I? Could I?

Feeling like a pair of size small pantyhose being stretched over a set of queen-sized thighs, I wanted to scream, "No, no, no." Still I heard my voice saying, "Oh sure, no problem." But there was a problem. And that was the precise moment I came upon another awareness: lupus ain't for sissies.

It would take courage to implement the plan I knew was necessary - to tell my family and friends and my community that I would not always be available to help them - even when I desperately wanted to. It would take pure determination to say it and mean it. And it would take every ounce of willingness I could summon to place a shield between me and the rest of the world when necessary. A shield that was resilient enough to fend off the barrage of feelings that were sure to hit: guilt, pain, regret... . And tears.

It was at that precise moment I realized I had stumbled upon a workable plan, while bumping my way through the fog. It was then I understood that I am simply a traveller, searching for the energy, the truth, and the light that will allow me to master the art of living my life in harmony - constantly in search of that special place deep inside, where a workable plan and an optimistic attitude are blended in perfect harmony to form the middle way.