The Waiting Room

What to do when you can't do much of anything

Welcome to purgatory. The water is neither warm nor cool enough for pleasure. In a matter of hours, we will know not just who our next President is but just how close we are to the end times for American democracy. Unless we don’t, in which case we will go to sleep no more comforted, no less nervous, beginning a cycle of ongoing pontificating and building anxiety as we await further ballot counts.

Maybe women will turn the election. Maybe they will show up in unprecedented numbers and vote for the right to control their own bodies. (Even if they do, we will not be ‘saved.’ We will still have the same shit sandwich on a plate in front of us, we just won’t have a dictator in the kitchen.) Maybe the electoral college will fuck us.

It feels more like an election of trying to keep things from getting worse as opposed to one infused with hope that things can and will get better.

That mind space is one I’ve been flailing in all fall.

I have nothing groundbreaking or particularly insightful to say about this election. I know as much as anyone who has been doomscrolling through the news does.

When my mother was exactly my age – 34 years old – she was running a presidential campaign. The first woman ever to do so. I, meanwhile, am sitting partially upright in bed feeling cautiously encouraged that my brain is working well enough to write these words and acutely aware that if I do manage to complete a whole coherent post, I should take care to limit my exertion – cognitive, emotional, and physical – for the rest of the day, because this will probably use up my battery.

In her beautiful book, The Invisible Kingdom: Reimagining Chronic Illness, Meghan O’Rourke writes about the loss of self associated with chronic illness. Of her debilitating fatigue:

 The feeling erased my will, the sense of identity that drives most of us. The worse part of my fatigue was the loss of an intact sense of self.

It wasn’t just that I suffered brain fog; it wasn’t just the loss of self that sociologists talk about in connection with chronic illness, in which everything you know about yourself disappears and you have to build a different life. Rather, as I got sicker that winter, I no longer had the sense that I was a distinct person. On most days, I felt like a mechanism that moved arduously through the world simply trying to complete its tasks.

That resonates deeply.

In another world – no, in another body – my last few months would have looked very different than they have. After Biden stepped out of the race, I had ambitions of throwing myself wholeheartedly into campaigning for Kamala. Not that there was or is anything I individually could have done to make a meaningful difference. Not that I have many shreds of faith in the American political process remaining – nothing like I had as a child or younger adult (see me age 6 in October 1996, dressing up as Hillary Clinton for Halloween with a Vote pin on my lapel; or age 9, brainstorming for an advocacy campaign to encourage politically-minded children to register their parents to vote; or 10, writing a school research project on female suffragettes; or 19, interning on Capitol Hill; or 26, co-founding Project 100, a political startup supporting progressive women running for Congress).

I would have tried to do something, though. And I don’t say this as an attempt at virtue signaling but rather as a personality descriptor. It’s the kind of person I am. Was. Will or will not be again.

from my 4th grade journal, in advance of the 2000 election.

I try. I push. I’ve been called relentless more times than I can count. The harder the challenge, the more driven I am. The more distant the goalpost, the more determined I am to reach it.

But I’ve been forced to relent. There is no space for that part of myself in the body I inhabit now. Worse: that part of myself, left unchecked, would do more harm than good.

Instead, I have spent the past week - the week before the most significant election day of my life - lying in bed and alternately crocheting and teaching myself to play the ukulele.

It feels insane to be writing about myself on Election Day, a day when I, in my California bed, am safer than so many women in this country. My intention, I guess, is to share what I’ve learned about being in the moment – how after many years of attempting mindfulness etc, I’ve only now made some progress at it, only now when I have lost the guarantee of future moments better than this one, only now when I’ve been told in no uncertain terms that the more I exert myself, the more I will hurt myself.

The acronym that scares me most in my alphabet soup of diagnoses that have been tossed around of late is ME/CFS. Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.

It used to just be CFS. The ME is intended to emphasize that this isn’t a psychological syndrome. That this is not something wrong with the brain that can be fixed by, say, therapy or changing your mindset. The hallmark symptom is PEM – post exertional malaise. This is the symptom I have struggled with most since May.

There is no known effective treatment aside from taking care not to exceed your ‘energy envelope.’ The more you crash, the more you can erode your level of baseline functioning. The internet is full of accounts of people talking about how their symptoms went from mild to severe, but I’ve found little in the way of people talking about symptoms reducing in severity.

(Well: with the exception of some online programs run almost exclusively by men, it seems, that promise to ‘retrain your brain’ and nervous system to ‘cure’ CFS.)

ME/CFS, in its mildest form, involves a 50% reduction in pre-illness capacity. It gets worse from there. At its most severe, sufferers are entirely bedridden and need assistance with all basic tasks.

Long COVID seems to trigger ME/CFS in a large number of people, and there’s some online tension between COVID-triggered ME/CFS sufferers and people who have been suffering for many more years, whose ME/CFS was triggered by a different virus.

Many in the former group believe – or want to believe – that they have a form of the illness that isn’t permanent, that might be cured by the novel long COVID treatments currently or soon-to-be developed. The latter community thinks the former is deluding itself, that it doesn’t matter what virus triggered the condition: ME/CFS is ME/CFS, and it’s for life. Or, at least based on the state of current medical research, it is.

Some in this group resent the fact that COVID-triggered patients have been saved the years of medical gaslighting the latter group underwent. Years of being pushed to just sleep more and exercise more – all of which made many people’s symptoms irrevocably and dramatically worse. Some are grateful that, thanks to COVID, the condition is being taken seriously, and more money is likely to go into searching for a treatment. Bernie Sanders recently introduced a bill in the Senate that would devote $10 billion dollars to Long COVID research, and Ayana Pressley and Ilhan Omar did the same in the House.

I want to believe. I’m unready and unwilling to give up hope that one of the experimental treatments I’m trying might cure me. That though I have all the textbook symptoms of ME/CFS, I don’t have the real and forever deal. That I will be able to exercise again, to live at greater than 50% capacity.

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Every morning, right after I wake up, I squeeze precisely measured droppers full of drug-infused olive oil into my mouth. The drug is naltrexone. It’s given at high dosages to opiate addicts to curb cravings. When given at low doses, it seems to have a different effect, producing more natural opioids, offering pain relief, and maybe decreasing neural inflammation and dampening the effect of some bad neural cells …I confess the fatigue and brain fog is setting in. I should Google this; I don’t have the energy to. I’ve just remembered that I forgot to put on a new nicotine patch this morning, and I’m trying to summon the energy to get up out of bed to do that.

I’m still titrating up to the therapeutic dose of low dose naltrexone – LDN, it’s called, in the ‘community.’ I hope it will work. I’m not giving up hope that it will work.

But I am giving up most activity. I’ve had to. I don’t want to make myself worse.

This means learning – for the first time in my life – to stop pushing. Learning that pushing is a bad thing. Completely rewiring my brain.

I don’t know who I am right now. I don’t feel like the person that I used to be – pre-sickness – but I am unwilling to believe that this new person is me, either. Instead, all I can do is look for ways to live in this liminal space with limited distress.

To engage in activities that are just absorbing enough, that involve not too much thought or movement.

To try extremely fucking hard to not think – which is the opposite of what I have always done. I think and write my way through life.

But I don’t know how to write my way through this one. Not through to some better other side. I can hope for scientific progress. I can hope that actually it will turn out that I have something different, something not quite as bad and chronic and forever. But that kind of thinking leads me to confront the irrationality of that hope and so the only conclusion I’ve come to is that it’s best to limit my thinking as much as possible.

(Though here I am, still trying. But this is the only thing I have written in days.)

So I’ve been crocheting, and now I’m teaching myself ukulele. A useless skill, one I don’t expect to do anything with. I’m not good at it. But I’m spending a lot of time on it. Because it is something to do. Because while I am doing it, I have to focus. I think only about my fingers, about making the right sound reverberate from the strings, about playing a note that rings cleanly.

I hope the future - my future, my country’s future, the world’s future - will be better than I fear. I know that my thoughts about it won’t change what happens.

I feel strange that I’ve landed on what seems like an endorsement of passivity on a day when the future of American democracy hangs in the balance. This isn’t that. It’s only, maybe, a reminder that anxiety is rarely a useful feeling.

That it is not just okay but probably healthy to do what you can and then stop. Step away from the scrolling and TV news. Preserve as much energy as you can – if it’s a finite resource, as mine is, and even if it’s not. Because chances are, you’re going to need that energy tomorrow, and the next day. Because there is so much more to come.