Dear one,
I posted this on Saturday, then moments later deleted it in fear that my honesty would be too much. You see, in this post I share some of my experience of possibly having a terminal illness. This is not everyday conversation. And I don’t know what you are contending with in in this moment. So please be in choice: decide if you want to read it, where you want to read it and when you want to read it. Take good care of your beautiful self.

35/40 Gratitude for bringing the light

There was no “happy” in my birthday this year. At least none that I could conjure. See, a couple of days before my birthday I received the news that I might have a terminal illness—ALS, a neuromuscular disease that, like a tarantula bite, paralyzes every muscle in your body.

My mind, a newbie at handling news like this, didn’t take it well. My mind didn’t say, “Okay, so there is that chance, but I choose to hang out in the ‘I don’t know yet’ and wait till we have a definite diagnosis.” Nope, instead the news grabbed me by both wrists, pulled me over its back and tossed me onto the floor. Then it kicked me down two flights of stairs and shoved me into a dark basement. A tiny yet endless basement where questions flutter like bats, asking “Where will you live when you are wheelchair bound?” “Is life worth living when you can’t bite into an apple, draw someone in for a hug and say, ‘I love you?’” “Want to die in Pittsburgh or Pretoria?”

The damp dark is not only filled with questions, but also sharp images that pierce my chest. “I want to crack the spine of O’s first book. I want to wake up in S’s remodeled bedroom. I want to be part of my niece’s wedding.” And this one on repeat, “I don’t want to die so soon. Please Lord, please let this cup pass me by, I have so much to live for.”

It felt like I was walking on quicksand covered with rice paper. And that basement, that basement waiting inches below. And anything—me seeing my fingers open a tube of toothpaste or touching a shirt my mom bought me—anything sent me down into that darkness. My birthday seemed pointless against the possibility of dying in two to five years, the average life expectancy after being diagnosed with ALS.

And also, I know that (who said this?) right now is called “the present,” because it is a gift. I yearn to be in it while I am here. Be in the joy of it. But the basement bars my access.

But you. You brought the song, singing to me while our eyes lock and we try not to cry. Leaving me a voice note song so beautiful we played it over and over again. You shuffled behind a locked door, then opened the sky as you drew me into a sparkling circle, as you sang and danced to Stevie Wonder’s “Happy Birthday.”

But you. You brought the light. You gave me a flickering golden glittery happy birthday sign and honey-colored candles. You lit the candles on the cake and watched me blow them out as I wished for enough time here. You built me a fire. And you showed up to the fire with bourbon, silliness and belly laughs despite the possible devastation.

But you. You celebrated me. You gave me gifts and made me cards showing that you see me, that you love me. You wrote me a poem and went around the table telling me why I matter. I can feel your care for me in your Amarula jelly, meerkat drawing, sunset painting, cardboard dice, family crafting book, face soap, gorgeous poem, gift of money.

But you. You fed me. Driving all that distance so we can eat at the Golden Pig. Ordering way too many dishes from Taste of India. Making your best homemade pizza. Getting me a gorgeous cake we savor for days.

But you. You brought the comfort. You came to my house to make hot chocolate and write a list of ways to get out of the basement. You came to my home to co-work, co-clean, pot plants or bake rusks so I could reach for your hand when I lose my footing. You held me in the many moments when I cried. You held me close at night when twitches flickered through my body and the basement felt so real. Your stillness there, your mercy, your love. Right there.

But you. You. With you even the darkest basement has light, even the saddest birthday shimmers.

Gratitude 34/40

[A note to the reader: angry women are often dismissed. “You’d look prettier if you smile,” is something I’ve heard many times. To feel and speak anger is often difficult for me, so in this post I’m writing in the third person.]

. . .

It starts when an unwanted ad appears. Just before she can mute it, the voice of a seemingly concerned man slips through. “That moment,” he says, “when you hear the news, and your life is changed forever….” Even though the sound is now off, the images have her full attention. She knows that moment. It happened to her a month ago.

The ad cuts to a concerned woman staring out of a beautiful bay window. Cut. Now we see the face of what looks like her husband sitting in the passenger seat of a car. He looks tired. His handsome son is behind the wheel. Cut. Pan out. We see their luxury home in a verdant garden, the gleaming SUV backing out of the driveway. Small print appears: something, something Myasthenia Gravis. Hanna sits up, this is one of the possible conditions she may have.

After the movie, her boyfriend can tell she wants to fight and suggests they talk the next day. In the morning she drives to the gym, hoping she can perspire this glowing ire out of herself. But when she comes home, the anger has congealed around her throat.

She feels vulnerable and sidelined. The ad, marketing the medicine she might need, clearly positions itself in the world of the wealthy. It’s not fair that only those with wealth can afford the care they need and maintain a lush life. A life where there is enough, so they don’t need to go into medical debt or give up needs like good quality produce, support for loved ones, or the security of retirement.

A second anger takes her back to childhood. It’s not fair that she was born into a world where there is a hierarchy of human value. Her white skin gave her far more access than kids of color her age, but her gender made her matter less. Both of those things are unfair. But today the salt under her skin is how that world groomed girls to be nice and mute—beautiful pushovers.

The third anger spans the decade of her marriage. A hierarchy of human value creates a societal agreement about how well (or poorly) we can treat each other. If she knew she was worthy of being treated well, she would have left him in the first months. If her community didn’t feel so powerless to interrupt harm, they would have intervened. It is not fair that women like her, the breadwinners, leave without a cent to seed a new life, leave only with a bag of scars.

The fourth anger smolders from all the stress and effort— the six visas— to stay in the US. All those flaming hoops she jumped through, all those stacks of paperwork and checks. All those nights not knowing. Will they send her back? The panic of being sent out of the country with twenty-four hour notice—an alien needing to prove worthy of being here.

The fifth anger burns with the difficulty of pursuing a career outside of the paths and support offered to mainstream careers. And that in a new country. Maybe she could have worked smarter, but the Lord knows she worked as hard as she could. It feels unfair that change work is often paid pittance and puts people in financially frail places. It feels unfair that care workers are often the first to burn out. Why do adjuncts get no benefits, receive no investment?

The sixth anger scorches the soft tissue of hope. Only last year she emerged from a sense of just surviving. Only last year did she take weekends off and sleep in. She started to dream again. She made a roadmap to retire at 75. She applied for artist grants, saved for a sabbatical at home, dreamt of supporting a larger network of folks. She sensed she could fly again and then, then this.

A friend has walked over and is holding her. “Life is not fair,” the friend says, and she knows it. Despite all this spilt milk, she is still profoundly privileged. She could have been the man with wind-weathered skin asking her for bread money this morning. This too is unfair.

It is not fair. Life is not fair. This is not fair. How much stress, how many injuries, how many years of not feeling safe can one sustain before one breaks? Maybe this is her body, her body breaking.

That night she attends a poetry reading. A poet* quotes Maya Angelou, “Let gratitude be the pillow on which you kneel.”

Today she kneels, forehead against the wall. She gives thanks that she can feel angry, for rage is part of grief. And grief, Ross Gay** says, grief metabolizes change.

. . .

* Naomi Shihab Nye
** Thanks Lizzie for the Ross Gay quote and your companionship

Gratitude 33/40

On the inside of my right arm are two tiny spots, as if a macaroni-sized snake bit me. The bites came from needles drawing blood. On either side my skin looks like sandpaper from bandages. This is the only physical sign I have that things might not be okay.

The rest of my symptoms hide from public view. If you know me, you can tell that I sound different, that I’ve lost my ability to make certain sounds like an Afrikaans RRRR or G. If you sing with me, you will hear I can no longer keep the tune. If I read bedtime stories with you, you can sense it strains me and that I stop reading much sooner than usual. If you work with me, you can tell that I have only a pinch of the energy I used to have. If you dine with me you will know that chewing can be difficult, that I choke more than before, that I’m sometimes too tired to talk, that I ask to be burped. If you walk with me, you can see that half a block can have me out of breath. If I didn’t tell you, you wouldn’t know that there are places in my mouth that my tongue can no longer reach, that I must help my left leg to get it into my jeans, that there are moments when my hands are too weak to open a zip-lock bag. And that at times, all of this scares me.

Today I went to get more bloodwork done. My muscular neurologist ordered ten different tests. When the kind person behind the counter tells me that the cost is $8,000 and my portion is $1,000, I fall speechless. Just yesterday I paid $650 in December bills. My friend with MS told me I should expect to pay the most in medical co-pays, but being told something doesn’t mean that you can handle it when it happens.

I walk out of the bloodwork place in a bit of a daze. Most likely because half of my blood stayed behind in glass tubes, but also—all of this. I am faced with two distinct new realities. My health is changing and to manage it is going to cost a lot of money. To be more accurate, based on my current estimated income and expected medical expenses, it’s going to cost over a quarter of my income. How much I will struggle physically is an unknown.

Yikes!

For two hours my mood drags like a wet gown on the floor of the world, picking up bits of belief that support a world view of scarcity. Soon I sit with too many sad questions. “What if I didn’t get ill? What if I never left my design job and money was abundant? What if I lose my ability to hold a pen and crosshatch?” I walk out to sit under a tree, hoping stillness will quench these questions. It doesn’t. But as I walk back, a word a friend sent me pops up: abundance. I love the idea of abundance and I decide to give it a try. I look at my life for evidence of abundance and new “what if” questions.

Here is my starting list:
First, last year I worked for a client who not only paid us exceedingly well, they were also understanding about issues related to health. What if there were more well-paying and compassionate gigs coming our way? What if I can make enough to cover costs, save and be super generous?

Second, several friends have helped me financially and many more practically. I support several people too. What if I can trust that the world will continue to care for me and I for it?

Third, I know folks with autoimmune diseases that live stellar lives. What if I will live a rich, full, beautiful life where I experience everything I can, give everything I got, love everyone I know into greater arcs of freedom?

These “what if” questions make me feel much better. And that in and of itself is medicine.

. . .
Image: Close up taken at MOMA this Fall. Is it a Klimt?

Gratitude 32/40

I am about to take a shower when I see the text on our chicken-chat: “I think one of our chickens has died and I need some help.” This is not how I imagined New Year’s Eve would begin.

We don’t know what she died of. Hendini was one of the younger ones. And one of the bullies. She was also a cunning escape artist. She would seek the chance to jump the fence and dash down the hillside while we ran after her, hunched over and worried about poison ivy.

Like Hendini, I too love to run. For most of my life I’ve been a stray chicken, often in my own company, often wanting more space in the company of others.

Over the recent frigid spell, the chickens stayed inside the coop for several days. Cooped up, I suppose. Maybe something went wrong then.

When I started to date my partner, I felt afraid of losing my freedom. This weekend was the first time in my life where I celebrated the holidays in the role of a “mom.” I loved being in this family, and I missed my days of entering the new year at a silent retreat. This is also the first time in my life where I can’t quite depend on my body.

When I woke up on the first of January I felt feral, like I too wanted to jump the fence. On the second of January I felt stranded by my lack of energy. On the third of January I felt worried about making a living with this life. Part of me feels disappointed with how disheveled I’m entering the new year. My energy is so low, my expectations scrambled, my house still partly unpacked.

And another part of me is rolling her eyes at me saying, “Girl, whatever! You too could be gone like Hendini—turning into a clay jug with feathers and stiff feet. No matter how disheveled you start the new year, you are here. Your lung sacks are functioning beautifully, exchanging Co2 for oxygen among other minor miracles. You be you. I love you in sickness and in health, productivity and poopedness”

Gratitude 31/40

I resist the urge to check my email, check my phone, but I’m failing. In the last 24 hours I did two tests whose results should get me closer to a diagnosis, and very soon the results will land in my inbox. I don’t like this grasping feeling I have. And yet, here it is. I really, really, really want to know.

In a class Marc and I teach on social change, we underscore the importance of developing a capacity to dwell in uncertainty. When this health thing started to unravel, I lit a candle and placed next to it a ceramic bowl that my partner made. I wanted to enter this passage prayerfully. I placed things in the bowl that I might need along the journey, like the picture of a saint. And I surrendered things that might not serve me, like this grasping-way-of-needing-to-know-to-feel-okay.

But being intentional about accepting uncertainty is not enough for me. In this moment my body bristles with frustration only a test result will soothe. I want to, no, I need to know. When the email flashes in, I call my colleague Marc over and we open it. It’s not helpful. In short it says that this was the wrong CT scan to test for thymoma. And the blood test never shows up in my online portal.

In that moment I lose my composure. If I were a toddler, I’d head straight for the floor and fling my arms and legs around. I don’t. I stand and speak through my tears, “I just want the tests to tell me I have MG and then say, ‘take this medicine’ so that I can have my old life back.”

When things feel so out of control, many people seek certainty merchants—strong figures that offer a simple story and clear solution (thanks Sonia Blignaut). In this moment I too seek the comfort of certainty and it is a moment-to-moment practice to shift my attention toward what is still stable right here, right now.

I go for that second blood test, the one I hope would give me some certainty. On the way back I bump into a neighbor and we talk about the desire for certitude.

“Diagnoses are good,” she says. “I love them. It’s like feeling shitty thinking I’m bi-polar but then I realize it’s just PMS.”

We laugh. Ah, this thing of knowing and not-knowing, this thing of being human.

Gratitude 30/40

An old television playing 1950’s Christmas carols welcomes me to the CT scan waiting area. The door to the scan room is wide and the steel door jamb looks like it belonged to a bank safe. The yellow “Caution Radiation” sign has me feel a bit uneasy.

When the door swings open, a platinum blonde woman waves me in. She wears dark blue scrubs with penguins dressed in winter attire, skiing all over her body. On her headband are four oval-shaped light bulbs glowing red, blue, green and yellow. If her attire isn’t enough to disarm me, her language is. She says a sincere, “Welcome honey.”

I can tell I feel more relaxed (or is it relieved) than my previous CT scan because this time I notice that the tree in the sky-blue ceiling tiles is the same as my neighbor Ed’s tree. The picture was taken in early spring after the leaves unfurled and before the blossoms wilt.

This time I go feet first into the donut-shaped machine. Once the scan starts, the blonde woman’s voice reaches me through speakers. “Lie perfectly still and don’t swallow,” she says. And goodness knows, in that moment a tiny bird lays a warm hard-boiled egg at back of my throat, pressing onto my vocal cords. All I want to do is to swallow it away. So I wiggle my toes. I hold the urge in loving care. I think of kittens. But nothing works. In a quiet machine moment, I succumb and swallow.

When she helps me up after the scan, I say, “I’m sorry, but I swallowed.”

“You did good sweetheart,” she says. “Don’t worry about it.”

When the heavy door closes behind me, a grey-haired gentleman stands under the TV fiddling in with his faded hospital gown. Our eyes meet and he says, “These are so hard to close.”

“Would you be okay if I close this for you?” I ask. He nods and turns around. His back is bare and his skin, sprinkled with sunspots and freckles, feels strangely close. I take the cotton laces between my fingers and turn them into bows.

There is a tenderness we can experience in vulnerable moments and I feel lucky to be in its flow.