on Passover, curling, and dysautonomia


Sundown tonight marks the beginning of Passover. And today, from sunrise until sundown, is the traditional Fast of the First-Born. I’m a first-born, but as on every other fasting day, I’m having to skip it because of dysautonomia.

I’ve tried fasting on these holy days before, and to say that it’s extremely difficult is an understatement. Even when I would do the “limited fast” acceptable for those who are ill or who have medical conditions (like I do), I always needed two to three days afterward to recover. So I’m learning to practice a deeper form of mindfulness on these days — at least, that’s the idea. Wish me luck.

Every year I try to think of a current application for the lessons of Passover — the recent economic crisis gave me plenty of Passover fodder. This year, though, I’m thinking of looking hard — harder, I suppose — at how dysautonomia has in effect been holding me prisoner. I do already focus much more on the positive things in my life; without that optimism, I would be in a truly sorry state. But I keep coming up against the limitations imposed by this chronic illness, this dysfunction of the Autonomic Nervous System, and getting angry or discouraged (or even refocusing on the positive) isn’t changing anything.


But even with the consultation of specialists, following a careful management plan, and taking prescription medication to regulate the ANS, I’m nowhere near “normal.” Fatigue is my constant companion, or is at least lurking around the corner when I’m feeling momentarily energetic and spry. I’ve been plagued by the return of migraines in recent weeks, and I’ve been battling with other unpleasant, inconvenient, and downright painful symptoms. It’s a non-stop party of suck, even as I endeavor not to become what I’ve termed “a big lump of no-fun clay.”

I haven’t been resting in the shadows, however. I’ve been actively pushing myself, and there have been some decent gains even though overall it may feel more like taking two steps forward and then a half-dozen backward. I go far beyond the recommended weekly quota of 150 minutes of exercise, and I’m often engaging in more strenuous activity than was first advised by doctors. I’m still a young-ish woman and want to be active!

I’ve gone so far as to join a curling team — yes, I know, but the game is more difficult, nuanced, and vigorous than it looks, and there’s a lot of up-and-down to trigger orthostatic problems. But after each curling match, I’m effectively done for the day. I am in pain. I am at the mercy of heavy fatigue. I’ll have another couple of hours of consciousness left in me, but there’s little more I can do than take a quick shower and go to bed. I’m sorry to say this is not an exaggeration.

I’m still hopeful that all of this “pushing the envelope” will pay off in the long-run, even as I’m coming up against some hard and fast limitations due to dysautonomia. I’m looking for a short, simple word to use besides “sick” or “ill” to describe what’s going on with me when someone asks. I don’t want to always be thinking of myself as “sick.” This is not a cold or a flu, or even a norovirus. This is not temporary, and it’s certainly not contagious. Maybe “compromised”?

Yesterday, I told one of the members of my curling team about my dysautonomia. I’d been holding out because I didn’t want to be treated differently or to be viewed as a liability. But after struggling through five games and nearly passing out a few times — I’ve seen stars during games and have frequently experienced tunneling vision — I figured it would be better to tell someone. Now, if I pass out, maybe they won’t freak out as much.

I want to be good at curling, but it’s really hard with this particular chronic illness. I’ll see what kind of cross-training (besides yoga and power-walking) I can do to try to build up tolerance, but it may not be possible.

So this is what is on my mind during this particular Fast of the First-Born. If you’re fasting today or are observing Lent or practicing your own form of mindfulness, I hope your time is easy and rewarding.

Creative Commons photo: Curling, by Peter Miller.

have a GOAT weekend

Last night, Mike described a productivity exercise that he’d suggested to his work group: Taking a few days or even a week away from the daily grind to blast through the ever-mounting to-do lists, tackle the streamlining they’ve been wanting to put into place (but haven’t had time to do), and essentially clear out the backlogs.

He called it taking a break to Get Our Act Together (GOAT). I found this at once hilarious and brilliant. Think of the t-shirts!

What’s been sitting on your back burner for far too long? What productivity processes are still awaiting implementation because you’re still dealing with all of the niggling day-to-day stuff? What’s been weighing on you and preventing you from moving forward at full steam?

I’ve got too many pressing activities going on right now to take such a step back, but I’m thinking of carving out an hour or two over the weekend to at least start making a list of what I’d like to tackle during a GOAT Break. A girl can dream, right?

True Story: Murder, Memoir, Mea Culpa, by Michael Finkel

True Story: Murder, Memoir, Mea CulpaTrue Story: Murder, Memoir, Mea Culpa by Michael Finkel
My rating: 5 of 5 stars

I don’t think I could accurately estimate the percentage of time I spent with my mouth hanging open or the number of times I exclaimed, out loud, “Oh, my God!” while reading this book. The sheer audacity and calculated rationalizing of Chris Longo — the convicted murderer around whom this story revolves — are at once both mesmerizing and horrifying.

“True Story” is the perfect title for this book, wherein the author struggles with the honesty/dishonesty of his subject, even as he comes clean about his own journalistic misdeed. I appreciate Finkel’s sharing of his own circumstances, with a detailed explanation of how he came to be fired from the New York Times Magazine, rather than offering excuses and justifications for his behavior.

According to Longo, he and Finkel are both liars, almost brothers in their deception — partially owing to the coincidence of Longo having assumed Finkel’s identity while he was on the lam in Mexico. As Longo keeps spinning his yarns to Finkel in long letters, over the phone, and in prison visits, he never stops offering additional versions of the truth to convince Finkel of his sincerity.

Chillingly, toward the end of the men’s association, Longo comments that it took, “two liars to make two people turn to a path of honesty.” But what is honesty? Based on Longo’s behavior and history, it seems that “truth telling” may be whatever partial, rationalized fiction will cast the narcissist in the best light or allow him to feel morally justified.

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Orange is the New Black, by Piper Kerman

Orange Is the New BlackOrange Is the New Black by Piper Kerman
My rating: 4 of 5 stars

I’d seen the Netflix series before reading Piper Kerman’s prison memoir, and the two are quite different creatures. Whether by design or actual fact, the memoir seems to me to be less harsh and dramatic but also more wearing and demoralizing.

I’ve occasionally wondered what prison would be like. Kerman’s book has gone a long way toward answering that question for me. Her family and educational background are similar to mine and while I don’t have a criminal history, I could easily see myself looking through Kerman’s eyes and experiencing the same deep thoughts and struggles.

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when things go dark

We’ve had several power outages in the neighborhood over the past several weeks. One was due to heavy snow and ice, but the other two have been the result of high winds.

It’s been interesting, because the lights flicker quite a bit before they go out. Last Tuesday, I was sitting in the neighborhood café when this happened. I exclaimed, “Disco coffee shop!” and the other patrons laughed at the weird, strobe-light effect. This morning, it was the kitchen clock whose display was dancing just before everything went dark.

It’s inconvenient to be without power, certainly, and particularly when I’ve got a huge deadline in a few days and need to keep my head down and my focus on transcribing, researching, writing, and editing. It’s also problematic when you get hungry.

However, I am enchanted by the sudden quiet of a power outage. All the background noises that we’ve learned to tune out—the furnace blower, the hum of the refrigerator, computer fans—fall immediately silent, and we are caught in the space between breaths. The wind still blows, rattling tree limbs and disturbing the chimes just outside my office window, but the house is quiet.

I bring out candles to at least partially illuminate the notebooks I am hunching over. I dig out the old tea kettle and put a match to the gas stove instead of using the microwave to heat water for tea. I pull on more layers of fleece and wool against the dropping indoor temperature. I even get a fair amount of work done.

But the silence has a strong pull, a soundless siren’s cry. I am bidden to be still. To let the quiet sink into me and settle over my bones and synapses. To breathe. To reflect.

Yes, this massive article is still due, with another massive deadline looming just a few days later. I need to do research and can’t get online. It’s getting progressively colder in the house. I really should go pick up a lunch somewhere and then work from the library until power is restored to the neighborhood. I really should.

But for a few blissful moments, I choose instead to sit and to observe, and to just be for a little while.

(And, oddly, the exact moment I decide to ride out the outage by taking a nap, the power comes back on.)

in search of more spoons

I’ve been coming up against my physical limitations a lot lately, and it’s been a humbling and aggravating experience.

Sometimes I forget that not everyone has chronic illness, and in those moments I am simply amazed by all the wonderful things other people are doing. I watch the Olympics and other sporting events in awe. Look at what the human body can do! I feel inspired. I feel hopeful. And then I remember that I can’t do any of that. Not really.

My partner plays hockey twice a week. He goes mountain biking and also cycles to work (16 miles each way) once or twice a week. And he still has energy to want to go hiking, bowling, and rock climbing with me. So you can imagine what a slug I feel like when I simply don’t have it in me.

True, I spend a minimum of 30-60 minutes each day engaged in physical activity. I have a standing desk that I use for a portion of most days. I dance. I walk. I hike. I’m trying to work yoga back into my life and I’ve joined a curling team. But I’m still exhausted more often than I’d like. I’m in pain almost all the time. I have to be careful about adding more activities to the end of my day — which is usually when my partner is available — because by that point I’ve often already used up my daily ration of spoons or have even borrowed against the next day’s (and sometimes the next week’s) spoon allowance.

I don’t expect or even want others to feel sorry for me. I just get frustrated by the many things on my to-do and want-to-do lists that have to be pushed aside, and by considering how many days (and spoons) I might have remaining.