Life, death & finding joy when chronically ill
Lately, I’ve been trying to work through some things. Mainly, why I have such a hard time introducing ambiguity into my life. I like my schedule. I like order. I like control. I get an immense amount of peace from working through my daily to do list. Exercise, breakfast, lunch prep, work, a lunch break walk, a nice homemade dinner, dishes, turn in early, always at least 8 hours of sleep. Repeat.
Repeat. Repeat. Repeat.
And it gives me peace.
But, deviating from my check list also gives me an intense amount of anxiety. Or if something comes up that has the potential to make me deviate. Even if that something is pleasurable. Say, an unexpected phone call from a friend. An unplanned long brunch. A leisurely errand runs long. A weekend trip.
I’ve always been pretty high strung, but my meticulous monitoring of my schedule has grown more intense in the last decade, since I was diagnosed with lupus.
In many ways, lupus necessitates this. One famous metaphor for understanding lupus is the “spoon” metaphor; the idea that you have access to a limited units of energy (spoons) to use up each day, so you need to parcel them out wisely. And, once they run out, you’re done. There are no energy stores from which to draw. It’s not as simple as rallying.
And that’s definitely true.
But what I’ve been wondering lately is: in what ways have I used lupus as a crutch to double down on the behavior that had always brought me comfort — being in control? In what ways is this and isn’t this new?
In trying to unravel this, I’ve been trying to investigate my gut reactions to deviations from my plan. A fun activity is suggested. My immediate reaction is ‘no.’ A shopping trip turns into lunch. I breathe deeply, annoyed. A future activity is planned, one that is designed to bring joy (a road trip! A visit to see friends! Someone’s birthday party!). I feel dubious. Will this be worth the trade off?
What if I don’t feel well that day?
What if I feel fine, but the activity itself makes me feel poor?
What if my schedule is disrupted for the following day or week?
What if my schedule is shot for several days?
What if I can’t be my best self at work?
What if I’m not very fun, because I’m too nauseous to enjoy what’s happening?
I inhale.
See, this level of reaction. This feels new. This feels like an evolution of my lifelong desire to control and optimize my time, a departure, an escalation. The stakes feel higher. My emotions are stretched thin, tightly wound.
At what point do my good habits (the ones that help me be a physically healthy, productive, thriving member of society) do more harm than good? At what point are they creating suffering rather than preventing it? And why does the thought of relaxing the reigns make my heart race?
My therapist has been prodding me here. What am I worried of losing? Would it be the end of the world if I skip a workout? Don’t meet my daily step goal? Get take out instead of cook a homemade meal? What if I’m not my best self at work? If I’m a big sluggish? What am I afraid of?
I mean, I’m afraid of not being the best I can be; a high achieving high performer always fears this. But that’s always been the case.
So, what’s changed?
Am I afraid of activating my lupus symptoms? Of pain?
Whenever she asks me this, I say: of course. Who wants to invite pain? It sucks. It’s debilitating. It’s limiting.
But, isn’t my behavior currently limiting me? Restricting my access to joy?
What am I really afraid of?
I think it’s ultimately less about trying to avoid my lupus-associated pain (which manifests as intense joint pain in my feet and hands). Rather, it’s more about avoiding a feeling that is harder to describe — a full-body sensation of feeling that I usually just describe as ‘lupusy’ for lack of a better word. The way I feel after I’ve overdone it. After I’ve been in the sun for too long. Over extended my body. Felt too much stress. Didn’t sleep well enough. Have been on my feet for too many hours. It lasts for a few hours and eventually subsides. But, while I’m in it, it sucks. Everything has to completely stop and I have to wait it out until I can resume as ‘normal.’
So, as I explore my negative gut reactions to the unexpected, the destabilizing, I’ve been trying to articulate what that ‘lupusy’ feeling is, and why I work so hard to avoid it.
So, what does feeling ‘lupusy’ feel like?
It feels like the flu. It feels like my knees want to buckle. My body wants to dissolve. I want to sink into the floor. It’s a complete zap of energy. It’s my skin prickling. My body is slightly clammy and dewy. My eyelids are heavy. It’s my feet feeling heavy. It’s like moving through quicksand. It’s being dizzy. It’s laying on the couch, bored. It’s waiting.
These are the answers I could give after a few moments of freewriting. If I were to provide the first answer that came to my head, though, I would tell you something a little different. I would give you an answer that feels little less explanatory, but a bit more visceral: it feels like death.
It’s in that answer, which feels embarrassing and melodramatic but also true, that I try to find a way forward. It feels like death because, it feels like how I felt when I was dying.
When I was first diagnosed, it took a good six months for them to get the formula right, to fully get me on the path to healing. In that time, day by day, week by week, month by month, my body slowly declined. My body began to attack my organs. My kidneys began to fail. My body was destroying itself and beginning to shut down and it felt like that every day. And, no one was really telling me how to fix it. Some scenes from that time:
-Going for a walk, my eyes filling with black dots as I felt light headed. A mile from home and without a car, I pushed through and made it home.
-Hanging up plastic to winterize my windows. My face prickles with sweat. I have to lie down.
-Handfuls of hair floating to the ground.
-Writing, trying to focus on my research.
-Waking up with night sweats, but too weak to make it to the thermostat to adjust the temperature.
-Sleeping 12 hours.
-Sleeping 14 hours.
-Being unable to find the correct words while teaching a class of undergrads, brain fuzzy.
-Orbs flashing across my eyeline, ocular migraines obscuring my peripheral vision.
-10 vials of bloodwork every few days.
-Sitting in the waiting room at the nephrologist.
-Gauging the impending intensity of a winter storm, wondering if I’ll have the energy to scrape off my car in order to drive home from the nephrologist.
-Crying in my car.
-Sitting in the waiting room at the ophthalmologist.
-Stressed that I forgot they’d need to dilate my eyes and forgot to ask for a ride.
-Driving home anyway. Hoping for the best.
-Sitting in the waiting room at the rheumatologist.
-Hours on the phone with insurance.
-Hours on the phone with pharmacies.
-Sleeping. Waiting. Wondering.
And throughout it all, a bodily weakness. Heavy feet. Tired limbs. Sweaty skin. Pain, pulsating through my body. Drowsiness. An inability to fully form words and function.
And ultimately — it’s that. That’s the feeling that I’m avoiding. Because, with it, memories of everything else come back. The pain. The weakness. The uncertainty. An entirely new sense of who I was, who I would have to be. As my therapist reminds me: the body remembers. It recalls trauma. It knows what it felt like. And so I, in my fierce clinging to routine and in my dogged commitment to my schedule, ward off that trauma, determined to not feel it. Because, even though my lupusy moments pass, lasting usually just four to five hours, I am transported in those moments. I am weak. I am dying. My future is uncertain. My body is letting me down.
So, even though I rationally know it passes, I hate feeling that way. Again, for lack of a better description, it feels likes death.
But, what if the rules I’ve constructed for myself, the rules that keep that feeling at bay and that keep me as close to my ‘old self’ as possible, have created a different sort of death for me? A death in which I’m not fully living life? Not embracing the ambiguity, the messiness, the joy that life can bring?
Lately, in a growing prick of dissatisfaction with some of the monotony of my daily life, I’ve tried to open my body up to experiences beyond my regimented schedule.
The body that remembers. The body that knows what death feels like.
And here are some scenes from the last month:
-Working all weekend on a renovation project, feeling satisfied about the tangible change to our home space, one that brings me joy.
-Saying yes to a long hike with my sister and a river walk and brunch with my partner on the same day, even though I’ve far surpassed my sun limits.
-Missing my 10k step goal several days in a row, focusing on other activities like a slower, more gentle yoga practice.
-Take out, 2–3 times a week, energy too spent to ensure our groceries are fully stocked.
-A weeklong trip to sunny Palm Springs, including several hikes that pressed my body’s limits.
-Chef’s tasting menus.
-A little bit of day drinking.
-Staying up past my bedtime.
And, in most of those cases, a few hours where lupus washed through me. Where my body grew weary. My brain fuzzy. My limbs heavy. My skin hot. But, it passed. As it always does. And, there was joy. There was uncertainty. There were possibilities, even though it sucked.
So, as I embark on this experiment, and as I work to press against the rules by which I’ve structured my life, I begin to ask myself: If I can grow a little more comfortable with letting death in, can I start to find more life?
