What the Heck are They Talking About: Neurological CFS: A journalist's brain on encephalopathy

I began my journalism career in central California where being socked in with heavy, pea soup fog on

Salvador Dalí. The Persistence of Memory.
1931. Oil on canvas, 9 1/2 x 13" (24.1 x 33 cm).
January and February days kept us supplied
with multi-car accident pile-ups on the freeways and unfortunately, fatalities.

I always drove to work using back roads it was safer. There were days the fog was so thick I drove at five m.p.h. with the driver’s

side door open so I could see the yellow line next to my car because I sure couldn’t see it looking over the hood.

And I wasn’t the only one sticking to side roads. Truckers who weren’t familiar with the area did it too, often at high speeds in an attempt to make up lost time.

I always drove with my windows down no matter how cold. I could hear vehicles before I could see them and it saved my life a number of times at four-way stops.

There would be clear stretches, but you could be back in grey cotton batting in a heartbeat. Having brain damage is like that.

Like most things the end of my journalistic career was more of a fizzle than a bang. I simply started losing my mind. Not insanity mind you, just the slow insidious process of brain damage.

There is no known cure and the specialist I see says I may never recover my mind at my former level. Can you say bummer? Can you say tears, profanity, and why me? Can you say of all the things I’ve lost I miss my mind the most?

As anyone medically diagnosed with the neurological disorder ME/CFS and fibromyalgia knows just the 24/7/365 relentless grind of pain and exhaustion is enough to bring most anyone to their knees. But, like countless other lives, mine didn't play out quite so simply.

As a single parent, getting three kids off to school in the mornings was all I could manage between the morphine level pain and the never-ending profound bone-crushing exhaustion. Some mornings just didn’t lend themselves to more than a quick skim through the paper, which is akin to suicide to an assigning editor.

I had no idea I had a neurological disorder, but I could feel my mind slipping in small ways.

I lost focus. One of the things I love most about journalism is the variety and learning new ideas, but it wasn’t helping me to stay focused on the matters at hand. (read How squiggles and colored brain maps may change how we view ME/CFS and Fibromyalgia - Life on Seven Brain Cells a day.)

So many times I realized I’d missed whole conversations, conversations I was supposed to be monitoring, because my mind had taken off down an interesting line of thought. I would pinch myself endlessly trying to keep my concentration in the here and now. For those of you old enough to remember the cartoon, Family Circus, my mind map looked like one of “Billy’s” black dash paths through the neighborhood.

I began losing the names of things. The heavier the exhaustion, the worse it was. The neurological term for this pathology is aphasia, more specifically anomia. I ended up talking around things (circumlocution) because I couldn’t remember the word “table,” or the name of the publisher, or the name of the staff member who was covering the subject at hand. Everything became a thingy and still is. I would substitute words like saying sausage when I meant salad.

You can only pass off so many things with a senior moment joke. I tried writing in notebooks, but would realize I hadn’t understood enough of what was being said to write down anything coherent. Or I would being having a “good day,” and could pretend that this wasn’t happening so I didn’t need to write it down. After all, I had an excellent memory. The operative word here is had.

I would go into meetings with a clear idea of everything I would be expected to cover and come up completely blank when called upon. I knew it, but I couldn’t remember it or figure out how to say it. This lovely little quirk is called expressive aphasia. How to convince the managing editor and executive editor you are clueless moron in one easy step. It was humiliating to say the least.

Other times problems cropped up simply because most editors knew their own beat very well, but I was expected to know everyone’ in the newsroom’s beat and so saying to me, well what about the “school” story didn’t help me much. I usually knew of 12 “school” stories in the works and needed more of a clue. Playing charades is not the best way to present yourself as a professional. Need I say more?

I’d be late because I could no longer find my way around in a city that I knew well. It is too scary to recount the number of times I went one way up a one-way street straight into oncoming traffic. I feel like a cat over due by two or three lives.

Numbers lost their meaning. And I’m not talking about the infamous “journalists can’t count” joke. Although I didn’t know it then, what I have is a rare disorder called adult-onset acalculia, meaning I’ve lost the ability to perform simple problems of arithmetic.

I couldn’t count money so I just handed over the largest bill I had and hoped it covered whatever I was purchasing. In the newsroom it meant that I assigned people to the wrong story on the wrong day, forgot to give enough travel time between assignments, the list was endless and highly upsetting to co-workers. I was frustrated, scared, angry about the anger and overwhelmed.

Oh yes, there is more in the little goody bag of this neurological disorder. I have what is known as pathological orthographic dsygraphia, meaning I cannot spell words with irregular spellings, not to mention merrily mixing and matching homophones as if there is know difference. Writing is no longer a process of minutes or even hours. Try weeks and months.

In_the_shadow_of_memory_skl In_the_shadow_of_memory_skl_1 As essayist Floyd Skloot, who also has ME/CFS, puts it in his seminal book, The Shadow of Memory, if I lose my train of thought I end up stuck at the train station for the day, the week or maybe months. So the impossible takes a little longer. Life goes as life goes, and no one asked me, or you for that matter.

For me, journalism isn’t a job it is a calling. Permanently disabled by the capriciousness of this neurological disorder, it is no longer my living, but you cannot quench a passion with illness.

When French artist Henri Matisse was stricken with cancer in 1941 he kept painting from his wheelchair and towards the end he produced colorful paper cut collages. I can't do even this, even though I have an art degree. I have constructional apraxia which is the inability to assemble, build, draw, or copy accurately. But, I can look and enjoy and appreciate. I can enjoy the talent of others.

So life does go on, and different doesn't have to mean unhappy. Most days I simply accept reality and just keep pedalling my trike, working around the impossible.

Bet you were wondering why this blog has a few spatters of blood where I overturned, but more often, I hope, there are little black rubber tracks where I popped a wheelie.

Live, love, laugh for life is short.

These exerpts from reviews of Floyd Skloot's book, "In the Shadow of Memory" fit like a glove. Although as individuals, we come from very different backgrounds, the problems caused by this immune-neurological disorder level the playing field of life.

FROM THE PUBLISHER
In December 1988, Floyd Skloot was stricken by a virus that targeted his brain. The resulting damage left him totally disabled and utterly changed. In the Shadow of Memory is a candid memoir of living with a brain and a mind that have suddenly been shattered -- an intimate picture of what it is like to find oneself possessed of a ravaged memory, unstable balance, and wholesale changes in both cognitive and emotional powers...

Publishers Weekly -

In this remarkable collection of essays, part of the American Lives series (edited by Tobias Wolff), Skloot (Night-Side: Chronic Fatigue Syndrome and the Illness Experience) conveys what it is like to live with a damaged brain. In 1988, Skloot was beset by a virus that left him with brain lesions (static dementia) that dramatically affected his ability to think. (Because of this condition, each piece here took one to two years to complete and was constructed laboriously in small periods of time.) He often cannot find an appropriate word and may say, for example, "pass the sawdust" instead of "pass the rice." He forgets faces, names, directions and how to perform simple tasks, and suffers from loss of balance...The author also details, without self-pity, how he was subjected by the Social Security Administration to a series of tests to prove that his illness was organically based and his disability status legitimate..."

(I'm now in the fourth year of my battle to win disability based on my oh so organic disorder. My medical file is about five inches thick with all the documentation the SSDI requires.)

I also like Kara Swanson's book, "I'll Carry the Fork." When she notes, "The curious thing about the crash that ended my life is that I lived through it," if you change crash to CFS you have a book that parallels some of the problems of the neuro-immune-disorder ME/CFS.

What the Heck are They Talking About: Neurological CFS

A journalist's brain on encephalopathy

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