What the Heck are They Talking About: Neurological CFS

The story of thousands - one woman's perspective

"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.

Joe: on the growth of spirit

"What would I give to be rid of these horrid symptoms? TO wake up and feel normal....to have enough energy to work 8 hours, to be able to go surfing and not feel wasted. To go just a couple hours each day and not be exhausted and medicated......I'd give a lot; thats for sure.....20 years of my life? one of my limbs? I hate the fatigue in one sense because it has taken so much; I love it in another sense because the only way the spirit grows is through trial and struggle. Obviously I am feeling similar to the last entry. There are minor changes; slightly worse memory problems and feeling zonked out; but with an adjustment of medication some of the brain problems are improved, including speaking/listening and concentration from taking half-dose klonopin during the day."

Joe Tillotson - Journal entry February 2004  Previously highly athletic: medically diagnosed at age 13 with fibromyalgia more than half a life-time ago for him.

Kate's comment: As always, I have been blessed with the permission of yet another person with this DD, willing to share part of what living with this DD is like for them.

A Plea for Biomedical Research for Children with CFS/ME

Sprawled on the floor, are a mother and her daughter. No more, no less. There are no analysts in the room, no doctors, no psychiatrists.

Just a mother, with her child, the way it has been for centuries.

Silent tears flow down the face of the weeping child, as they have slide down the faces of children time out of mind. The mother rubs and pats the child’s back rocking slightly making the comfort noises that parents have made time and time again throughout the world.

And like so many before them, these two love life, and the love life brings them. It surrounds them like an aura.

Although a unique individual, the child like children before her, springs from a pattern of behavior that knows not the divide of language or illness.

The child plays with friends, enjoys school and the dance lessons she has taken for the past five years. She wants to be a dance instructor when she is grown: just as all children dream of the paths to which their potential may one day lead.

She weeps with frustration and pain. She has been trying to relearn a simple gymnastic move that was like breathing to her before she became ill. A usually sunny child, this cloudburst releases hithero unacknowledged grief and sheer misery.

Like so many parents before her, the mother fights back tears of her own, knowing that there is no cure and no biomedical research being done to bring about a greater understanding of this biological disease in children, much less a cure.

The mother chokes back her own grief as she soothes, “You are young lovey, and you may outgrow this, at least the severity. Yes, it is good that you stay focused on the positive things in life, but sometimes tears are necessary too. shhhh shhh lovey, sokay, sokay, your family loves you just as you are, sokay, it’s alright to cry.”

Schooling her face into a smile the mother brings out an increasingly threadbare but well-loved family joke and says, “You know that my magic wand is broken and they won’t honor the warranty. Don’t worry, I’ll write another letter and we’ll get things fixed.”

The two laugh a little as they hold each other in a tight hug.

Eventually the parent and child part and do what others have done time immemorial, they pick up the pieces of their daily life and go forward: first one step and then another.

Two of my children have been medically diagnosed with the devastating biological disorder. They are: active, mentally healthy young people, who also love to go to school among other things.

Friends and Family: The Good, Bad, and the Ugly

- The great gift of family life is to be intimately acquainted with people you might never even introduced yourself to had life not done it for you.
                                                                               - Kendall Hailey

I will never forget Christmas Eve 2002. For that was the night my dearly loved best friend and sibling told me I was “crazy” and that this most beloved person was cutting off all contact with me from that moment forward. And it was done. This person also lobbied hard to convince other close relatives that I was psychotic, not ill, and not to listen to me.*

This was one of what felt like hundreds of stab wounds of varying depths of betrayal at the time. Friends I’d known for years no longer responded to my emails, former work colleagues avoided me.

Of all the “deaths,” dealt by nonpsychiatric neurological Chronic Fatigue Syndrome (CFS/ME) and Fibromyalgia: loss of health, loss of energy and vitality, financial losses, loss of credibility, loss of work I loved; the loss of friends and family was perhaps the most devastating.

At that time, it truly was the totally unconditional love of my three children, and their calm acceptance of what was right in front of their faces, that kept me on this earth.

In his book, "When Bad Things Happen to Good People," Rabbi Harold Kushner writes,

"At some of the darkest moments of my life, some people I thought of as friends deserted me—some because they cared about me and it hurt them to see me in pain; others because I reminded them of their own vulnerability, and that was more than they could handle. But real friends overcame their discomfort, and came to sit with me. If they had no words to make me feel better, they sat in silence (much better than saying, 'You’ll get over it', or 'It’s not so bad; others have it worse') and I loved them for it."

My sibling finally re-established communication with me on my birthday a year later, but has never apologized as this person does not believe they did anything wrong or damaging; and the relationship remains distant and strained, as do many of our family relations.

And although I lost many relationships, some friends and family stuck around, not because they understood my illness, but because they loved me. Life has gone on, as it must.

I have tried to make sense of this boondoggle for years now and finally concluded that as we change and grow some relationships fade while others grow stronger. I would even venture to say that it has nothing to do with being ill, but rather is an inevitable continuum present in the lives of all of humanity.

Many people have a great deal invested in the people in their lives remaining the same so that they can remain the same. Life doesn’t work that way. Whether the changes are subtle or have the impact of a Category 5 hurricane (can you guess what part of the country I live in), we all change whether we seek it or not, whether we wish it or not.

New friends know me for who I am now and accept my limitations as part of me. Others, from my old life, are coming to see beyond these new limitations and accept that my raucous sense of humor still lives, my love of gardening and the earth is an abiding one, and that my loyalty to my friends rarely wavers.

But, they have also had to accept that in many ways I am not the person they knew when our relationships began. I like to think of myself as new and improved with sprinkles on top.

For those who cannot come to terms with my organic illness and the inevitable life changes, I wish them well as our paths diverge. But, I also leave the door open, not only to allow those who leave back in should they wish to return, but to leave wide the door letting in new friends and forms of support.

Originally posted on RemedyFind.com August 2004

- When one door closes another door opens; but we so often look so long and so regretfully upon the closed door, that we do not see the ones which open for us.
                                                                -  Alexander Graham Bell.

*Addendum: At the time of our initial argument, I said, "Why don't you do your homework," and my relative replied, " I did." In 20/20 hindsight I believe that the homework was done, but because the psychiatric myths of neurasthenia are so pervasive in our society, the remarks make sense in that context even though the conclusion is not supported by the biomedical evidence.

As a professional journalist, I believe journalists must shoulder a great deal of the responsibility for the confusion. The failure of the media to differentiate between two diametrically opposed medical hypotheses is a fundamental error with severe reprocussions.

And the use of the vague, undefined term "controversial," doesn't cut it. Good grief, whether you like your toilet paper hung "over" or "under" is controversial. The elemental failure by journalists to differentiate between "mass hysteria or neurasthenia," and a biomedical disorder classified by the World Health Organization (WHO) as a nonpsychiatric neurological disorder under G93.3 is scandalous.

scan·dal·ous adj

    causing or deserving to cause public outrage or censure
    causing or having the potential to cause damage to somebody’s reputation