What the Heck are They Talking About: Neurological CFS: The story of thousands

"In the depth of winter, I finally learned that within me there lay an invincible summer."

--- Albert Camus, Novelist

There was once a woman who loved to laugh, play hard, and work hard. Her life was bursting with activity and future plans. Then, without warning, life changed. A virus? A flu that lasted for weeks? A family history of autoimmune disease? That's all affirmative. This woman still loved to laugh, play and work, but life became harder as she became more physically ill.

Laughter faded as this woman fought to stay on her feet. You see, she could no longer play as hard as she once had. Life had been reduced to working just to exist and in the end, that too became physically and cognitively impossible. She couldn't afford to be unemployed; she simply had no choice.

Barriers sprang up like dandelions in springtime. Financial devastation: destitution and poverty; tangled miles of governmental red tape; stigma; and profound losses generating seemingly endless anger and tears. She missed the friends and family who, for whatever reason, could not stand by her. Just existing became a high wire act without a safety net.

Her grief deepened with the medical diagnoses of two of her three adored children with the same neuroimmune disorder that racked her body.

Although she remained a woman who liked to laugh, to watch her children grow, who wanted more than anything to go back to playing and working hard, for the first time in her life she faced something willpower alone could not overcome. Nor was a cure for her young daughters in sight as the result of a ideological war by psychosocial adherents on biomedical medicine and researchers.

Life was unrecognizable and nearly unbearable by her former standards. In a spiritual quandary she faced the same door asking over and over again, "Why? I've lived and I have memories; my daughters have just begun their lives. Why? Why? Please, I'll give anything for a cure for them!

Gradually she realized she faced a decision.

She could make a new life unburdened by former definitions of love, laughter, work and money, and teach her children how to do the same, or remain focused on the only door oblivious to what windows that might open.

Tied to this earth by her profound, unwavering love for her children and their love for her: she chose life and laughter.

It was not an instant decision or an easy decision. Nor was it a single decision. For hers, like so many others, was a fractured fairytale. Answers came in bits and pieces through the 24/7 haze of morphine-level pain and brain damage induced cognitive deficits amplified by physical sensations she jokingly referred to as "sprinting through neck deep Jell-O."

It was not an easy choice and she wistfully glances back toward her "old" life with longing on occasion, but slowly, day-by-day, she realizes she is moving forward based on a new reality.

She still loves fiercely, laughs often, and plays and works as hard as possible. But, now her life is based on her own reality not someone else's version of "life." Each day she tries anew to "walk the walk" for her children for she knows no one ever learned much from "Do as I say, not as I do." She gradually understands that no matter what happens to her or those she loves, good or bad, the world moves on. A lesson, of which she must remind herself on more than one occasion.

Life is good, just different, and she is in the process of becoming a person who might never have "emerged" living the same ‘ol, same ‘ol. And she says to those around her, "Come lean on me and I shall lean on you and together we will move forward, live life to our fullest, and yes, even find justice and a cure."

Live, love, laugh my friends for life is short regardless of the circumstances.

What the Heck are They Talking About: Neurological CFS

The story of thousands - one woman's perspective

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