A tray of brightly colored Easter eggs

Eat or be Eaten, and Easter

I. Eat or be eaten

I first saw it on the after-visit summary from my January appointment with the neurologist. Weight: 117 pounds. This is the least I have weighed as an adult. In another context being underweight would be just fine with me. I grew up in a fat-phobic culture. I grew up believing I should look like Kate Moss. I wasted way too much life believing the lie that “to be thin is to be beautiful and to be beautiful means you belong.” But now, now my context is changing.

Weight loss is a sign of ALS. This can be because chewing and swallowing is difficult, and because as some muscles atrophy the rest of them need to work harder, so you burn more calories. If there are no extra calories to burn, your body will break down muscles and organs to keep going. People with a larger body mass live longer than skinny sticks like me. In mid-February I met with an ALS dietician who suggested I eat at least five high-calorie high-protein meals a day. The underlying message I walk away with is, “eat or you will be eaten by this disease.”

That threat is not unfamiliar to me. “Eat or be eaten” has the same timbre as “stay thin or risk rejection.” I know what to do next. First disconnect from what you need, want or feel, and secondly follow this new diet toward safety without question.

Now if you know me you know that I eat like a bird—nuts, seeds, sprouts and salads. I don’t do well on loads of fat and dairy, protein, and carbs. But in this moment of my life I am in a state of self-forgetfulness. I am disembodied. I am afraid to die and so I treat my body like a machine that must eat, must eat, must eat. In addition to this mandate, I started taking ALS meds that help protect my neurons from dying. The meds need to be taken exactly twelve hours apart on an empty stomach—two hours after your last meal, one hour before the next. This means that not only does my diet change, my timing changes too: 8:30am breakfast, 10:30 meds, 12:00pm lunch, 3pm snack, six o’clock dinner, 7:30 snack, 10:30 meds.

Slowly my appetite started to dwindle. Then I got COVID and my appetite disappeared. And then I got seriously ill from what seemed to be a stomach bug. My weight dipped down to 112 pounds. I have never felt so ill in my life. For a week I didn’t leave my house. I spent the whole week lying down. I was a piece of cardboard at the bottom of a lake, saturated and slowly disintegrating. I was a blanket of bones that assembled to attend virtual appointments and then collapsed into naps. I was soup that rose and fell on tides of nausea. I was a dysregulated body with an appetite that disappeared, then suddenly flared up into sharp hunger and a simultaneous urge to defecate.

Have you ever held a raw egg in your hands and felt that even if you clamp your hand tightly, some thin part of the white runs through your fingers? It felt like a thin part of me was seeping out.

This appetiteless nausea combined with regimented meals continued for five weeks. I thought, ”I cannot live like this.” On the fifth Monday of breathing these gray waters I stood hunched over my kitchen sink. I’d felt a disorienting nausea all afternoon. I was able to keep a mango and protein powder smoothie down, but I knew I’d not eaten enough. Before bed I opened a vanilla Ensure shake with trembling hands. “If I can hold this down,” I thought, “it’s at least another 350 calories.” But as soon as I put the cap back on the empty bottle, my own cap came off. I reached the sink just in time to watch the smoothie and the shake stutter out of my body.

“This,” I swore to myself as I gagged on the last bits of sticky mucus and vanilla-flavored vomit, “This is the last time that I will force my body to do what she doesn’t want to do.” Making a promise like that to my body is not new. Maybe eight years ago I wrote a letter to myself: “I raise a white flag. I am tired of being at war against my own appetites, I am tired of withholding sweetness and affection from myself.” As I wiped my hands clean I remembered and restated that promise. “No more war. No more me overpowering you with what I think you are supposed to do or be. I want to listen to you, I want to care so well for you, beautiful one.”

II. Easter

When I woke the next morning, Tuesday, I did two things. First I asked my partner to bring me celery, carrots and lettuce. I made myself a giant salad, which is not something I’d eaten in weeks. Then I contacted my doctor and told him I felt like shit and was too thin. He quickly replied, “Stop the medication. Nausea and loss of appetite is a side effect, and we need you to maintain weight more than anything.”

I stopped taking the meds. This meant I could quit eating on a timed schedule and could feel for when I wanted to eat. I started eating salad and allowed myself to eat fruits and yogurt (with protein powder!) for lunch. I went through jars of pickled beets like groundhogs through a vegetable garden. After two days, Spring returned. On Thursday I felt the seed of my appetite sprouting. On Friday my partner’s daughter Early noticed and said, “I am so glad you are hungry again.” And then she paused and said, “I hope that doesn’t sound mean!” We laughed.

On Easter Sunday I could eat and stayed vertical and engaged in a beautiful community gathering. On Monday I woke up feeling like a tree in bloom. I felt new. I felt resurrected. And I had put on three pounds. During my 11 o’clock care team check-in meeting I said, “I feel good! Since it is Easter Monday in South Africa, I declare today a national holiday in my home. Today I am going to do nothing but give thanks. Today I rest and bask in what is wonderful.”

As Easter Monday came to a close, I felt like a tree with wilted flowers. I felt saddened that my intentions and actions were so divergent. While I wanted a soft day of being replenished by gratitude, silence, and sunshine, I defaulted into a busy tasky day.

When I was so ill I didn’t have the energy to drive myself to do more, or to criticize myself for this or that. I was too tired to witness my mind reciting my to-do list over and over, like a nervous child trying to cope with the unsettling feeling of dying by being paralyzed from the inside out. No, I was a puddle of breathing guts in skin, surviving.

And now that I am being reconstituted, I find that all my old patterns have rejoined me. I tried to do better on Tuesday, but my day was packed with appointments and paperwork. After a weary day I joined craft night on Zoom, intending to draw. But I got stuck in the waiting room. Instead of texting my friend to let me in, I turned to the Internet and email, hoping to find more guidance on how to tell the kids I’m dying. An hour later I quit the Zoom waiting room. I was a moth caught in a web of dread. I called a friend. “Please,” I said, “I don’t feel well. Come get me.” We went for a walk and ended up sitting on his porch sharing a beer in silence. Then I walked to my partner’s house and said, “I can’t sleep alone tonight.”

This is the last chapter of my life. This is when I get to live my very best life. Now is the time to live the most beautiful, meaningful, adventurous, liberated, joyful, daring, honest, magical, creative, connected expression of my life. I get to live now, even as I am dying. I get to live now.

In my resurrection, I don’t ascend. I fall down instead. I pray, “Please, in this final chapter of my life, please lead me. I don’t know how to live well while dying. Please help me face my fears and everything unconscious that drives me away from the gift of this moment. Please help me see the way. Please help me find the support I need. Please help me see clearly what matters most and help me live into that. Thank you. I rest in you. I trust that you won’t let me die without doing, loving, experiencing what I am here to do, love and experience. Thank you for the life I still have. Thank you that you are here with me, always.”