5 Challenges. 5 Small Victories.

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I find that the most difficult aspects of dealing with CFS are almost impossible to articulate. That’s what makes them so challenging…

1 . Doctors and friends only see me when I’m at my best. They don’t see me when I’m holed up at home unable to go out. So it’s difficult for them to understand how serious my condition is.

2. You need your brain to solve this problem but you can’t quite access your brain.

3. Like any crisis, CFS is tough on the relationships in your life. But the added complexity of being in a misunderstood crisis seems to bring the worst out in some people. I call them Chronic Fatigue bullies.  Continue reading

Superpower Day

If I could choose a superpower, it would be slender ligntning bolts that darted out of my fingertips providing infinite financial resources in whatever direction I chose.

I would peeeooooow! make sure I focused on completing my own recovery without having to take care of so many other things at the same time. (If you’re traveling with a child, put the oxygen mask on yourself first…)

Then I would:  Continue reading

A Word about Trauma, Chronic Fatigue & Fibromyalgia

“The only time I’ve seen results this bad was with a patient who told me stories like, “My mother got me through the Holocaust and when we made it to the States she killed herself.”"

By 2008, I was being treated by a department at California Pacific Medical Center that specializes in complex cases. One of the first things they did was a neurotransmitter test and their reaction to my test results clued me in to the connection between trauma and Chronic Fatigue Syndrome.

I looked back at my life. What could equal the Holocaust combined with a mother’s suicide? It was obvious to me that as a young child, I had experienced my parents’ divorce in a traumatic way. It wasn’t the fact that they divorced; it was the way they didn’t appear to hold anything back in using me against each other. I imagine that when I continued to do well at school (albeit a little less so), the effects of their behavior on me were too subtle to get their attention.  Continue reading

First Came the Dream…

The dream itself didn’t seem unusual. But I woke up that day in July 2009, really struck by it. It had an insistent quality to it like someone knocking hard on a door to get your attention.

Have you ever had a physical? In my experience, it looks like any other doctor’s appointment. The doctor asks a few questions, orders a few tests. In Hollywood movies however, they seem to involve the patient on a treadmill, hooked up by wires to monitors that are observed by a technician. My dream looked rather like a physical in a Hollywood movie.  Continue reading

The Limits of Logic in Healing Chronic Fatigue & Fibromyalgia

I was in a flat somewhere in Edinburgh, Scotland when I got into a conversation about Euclidean geometry. My fellow undergraduate was studying mathematics (I was getting a Bachelor’s in chemistry), and had just learned a system of mapping three dimensional space using circles. This meant that what we had all been taught as children – x, y and z axes that were straight lines – was merely a particular way of looking at things. It had come from Euclid‘s approach to describing shapes mathematically. Instead of looking at space as being made of cubes and straight lines, you can look at it as circles and spheres. What we’d been taught as the way to map 3D space was actually just one way, based on one man’s theory. Whoa.

Then there’s the theory of light. First Newton said rays of light were made up of a series of particles or corpuscles (the corpuscular theory of light). My memory gets a little sketchy here but I believe this competed with a wave theory of light for a while. Sometime in the nineteenth century, someone set up an experiment to test which theory was correct. The wave theory correctly predicted the results of the experiment and won the day until Einstein came along. I can’t tell you what is happening on the pioneering edge of physics today but I do know that as recently as when I was in high school (or not so recently) quantum physics helped us to equate the corpuscular nature with the wave-like nature of light. Whenever I solved problems in Advanced-level physics, I knew how to choose which equations to use based on which aspect of light I was dealing with.  Continue reading

Twelve Chronic Fatigue Triggers and Their Gifts

I happened to reconnect with my father’s sister shortly after I first fell sick six years ago. I hadn’t seen her since I was about seven years old. When I was having difficulty recovering from surgery about a year later, she mentioned that she’d gone through something similar. She too had undergone a myomectomy as a young woman and found herself unable to function afterwards. “How will I ever return to my law practice if I can’t even read the newspaper?” she’d asked herself. It took about six months but she eventually got better.

I now recognize her symptoms as meeting the minimum definition of Chronic Fatigue Syndrome which suggests that I have (1)a genetic predisposition to this disease. Not only did reconnecting with her give me access to this information, I managed to summon the courage to tell her about the inexplicable, special connection I have always felt with her. She told me she’d always felt the same way… Continue reading

Radical Forgiveness & Chronic Fatigue

Or, Forgiveness: Epilogue

“So let me get this straight. You were kidnapped, imprisoned, then abused by your rescuer?” Maureen summarized.

I wanted to prove her wrong. I had to show her that it wasn’t quite like that. She mustn’t reduce my smart, worldly parents to such shocking terms. But as I searched unsuccessfully for proof to support my feelings, I had to accept that she was right. Being flown first class to the best schools in the world does not change these facts.

My mother left my dad just before my ninth birthday. She dropped me off with friends who were instructed not to let me go outside, then disappeared. After a week or two, I was taken to an uncle’s home where I was locked in a room. Suddenly and unexpectedly, my dad walked in. I was thrilled to return home with him! That is, until he moved his girlfriend in. Continue reading

The Three Times My Bladder Failed

Or, Forgiveness Part III

Sefi Atta won the inaugural Wole Soyinka Literature in Africa Prize and is a high school friend. Her latest book is Everything Good Will Come. When we reconnected recently, I learned a few surprising things about her memories of me! In this Forgiveness series, I’ve written about sources of overwhelming stress in my childhood, which I now understand contributed to Chronic Fatigue Syndrome. What Sefi wrote about her impressions is reprinted below with her permission. It helped me to understand the stark difference between my inner life and outward appearances, and the value of reconciling the two in order to heal.

The Three Times My Bladder Failed

by Sefi Atta

When I was ten years old I had a piano teacher who hated me – Okay, perhaps she didn’t, but I couldn’t sight read music and this clearly irritated her. She would glare at me as I tried my best to wing it. Continue reading

Glimpses of Healing: Lagos. London. New York.

Or, Forgiveness Part II

I don’t remember why I was walking through the library of my new boarding school in England, with a guitar in my hands. I’ve never known how to play one. It was close to bedtime and there were a few girls from my year sitting in the carrels. Somebody asked me if I played the guitar and I said yes. Then I encouraged everyone to come out and sit around me.

I was the new, 15-year-old girl from Africa. During those first two weeks, I had been mostly quiet while I took in my new surroundings. I can’t say what I was thinking that night. Maybe it was simply time to break my silence. Once everybody was sitting politely in a semicircle around me, I dramatically put one foot up on a chair, took the guitar out of its case, perched it on my knee, and strummed away. Continue reading

Princess Lab Rat, I Presume?

Or, Forgiveness Part I

The rumor was that the woman my father married used to be a prostitute. “Look her up,” someone apparently said, giving father a note as he prepared to leave my mother at home and fly to New York. “She’ll show you a good time.” Wink, wink.

I couldn’t care less about race, class, or social status. And anyway, I wonder now about the word “prostitute.” If the person speaking English also speaks Yoruba, perhaps they are referring to another meaning. The Yoruba translation for prostitute is ashewo which also means woman with loose morals. Maybe my father’s set just didn’t like her.

My prejudices generally lie around things like pronouncing nuclear NUKE-U-LAR. I also never got over the guy who put his fork and his knife in his mouth at dinner. I probably didn’t look too good myself as my mouth fell open with food in it! Continue reading