Leaves in My River, Stars in My Sky

I hate crying – it’s an uncontrollable language of pain, and I lack enough control as it is – but I was crying tonight. I’ve heard that no single emotion is inherently good or bad. We should acknowledge them all, pick each up like a leaf from a stream, think, “It’s just sadness,” then put it back down and let the water take it away. However, I like to pick up the Sadness Leaf, crush it, and bury it in the dirt. Out of sight, out of mind.

Scrolling through my Facebook feed after dinner, I found myself thinking about all the people who stopped speaking to me after my diagnosis, and tears, undeniable evidence of sadness, came. Mostly I stay positive. My doctor and I believe I will survive long enough for a treatment or cure to be developed. That possibility and the love of my friends and family keep me fighting. Still, the deafening silence from people I grew up with, celebrated holidays and birthdays with, listened to when they were troubled… it hurts enough to make my throat clench and my eyes sting. It starts a rush of unwelcome memories of staying up late on the phone, talking a friend through a divorce. Then I recall walking down the aisle preceded by bridesmaids who have faded like ghosts from my life, existing for me now only in photographs. Friends I traveled the world with might as well have stayed on the other side of the ocean; they are that distant from me. These people I loved drifted away like debris on a beach in the first high tide after a tempest.

In the quiet after the storm of my diagnosis, my old life washed away, and I learned the truth about those I love. People who are far away or have been out of touch resurface, and I realized that for all the people nearby who are too weak to support me, there are others, scattered like stars on a winter night, who have been glowing for me this whole time.

There is the college friend I met so many years ago and now only speak with occasionally, though we once talked every day. He was the one to hear the news and call, crying. No words, just sobbing because that said it all. I cried under cover of his tears, safe because I couldn’t hear my own.

Then there is the woman I knew only for one summer back in California when together we learned to cook like adults, follow a recipe, peel a mango. She flew to me in Oregon, made her super secret special cake, and promised to stay with me until the end and hold my husband’s hand at the funeral, whenever it may come.

Seven years ago, I met a girl in a karaoke lounge in DC, and we sang Britney Spears (ironically, if that’s what you need to believe to keep reading this post). We both moved, sometimes to the same cities. We campaigned together, hit all the vegan restaurants we could find, and lounged in parks with a pile of books. She stayed up late for a month after my diagnosis to answer my desperate 2 AM phone calls. She’s coming to visit this weekend.

Last month, my in-laws moved across the country to live five minutes away. My mother-in-law feeds me pills in yogurt so I don’t choke on water and helps me clean my teeth. Then there’s my father-in-law, who brings me desserts several times a week to keep my weight up and once spent a whole day assembling my hospital bed.

And last in this post but not in my life, the aunt and uncle who surprised me by sending a box full of starfish. They live at the beach where my family went on vacations. They must remember how I couldn’t end a week at the beach without bringing a starfish home. I brought a starfish with me when my husband and I moved 3,000 miles away to remind me of my childhood, but one night Malka ate it for reasons we cannot fathom. Receiving these new starfish reminded me that I and my precious past are not forgotten.

Allowing my mind to linger on these winter stars introduces some happiness and gratitude to my swirling thoughts. They are more leaves in my river, floating alongside and softly nudging the painful ones. They make it easier to unclench the fist I made around that first sour leaf, to let it go and trail my fingers in the water to feel whatever the current holds. It drifts on, benign and unremarkable.

After all, it’s just sadness.

A Pashmina For My Appendix

Today I bought shoes for the first time since my diagnosis. It was also the first time I bought shoes I would not actually wear for walking. My new sandals will just serve as a barrier between the soles of my feet and my wheelchair’s foot plates. No more worries about arch support or gaping at my heel. No test runs to make sure the shoe doesn’t rub the small bulge on my toe where I once snapped it during ballet. Shopping for shoes was like getting a frivolous accessory for a vestigial organ, a pashmina for my appendix. It was a novel experience, but ultimately too bizarre and sad to look forward to repeating.

The Kingdom of Childhood

For some reason, this lovely spring weather makes me remember all the things I love about teaching: morning meeting and yoga, book club and literature circles, zumba and dance breaks every half hour to keep our energy flowing, writing workshops, and of course, just being with the kids. Listening when recess ended in tears, geeking out over Harry Potter, eating lunch together…

Maybe it’s rushing back to me because this is science fair season. I have so many memories of wearing my very best “thrilled and impressed” face for hours during the fair. Then there were the months beforehand when I was a test subject for at least five experiments in which I learned I am not colorblind and I do like chocolate chip cookies.

I miss it all. How lucky I was to spend my days this way before ALS stole it all away.