Fortune’s Fool

When I was sixteen, a fortune teller at a fair predicted I would meet and fall in love with a man who would physically take care of me. At the time, I didn’t understand what she could possibly mean. Would I rely on my husband for money? I was hungry for independence and therefore a bit insulted, but most of all, I was bewildered. I needed more time with the fortune teller in her enchanting red silk tent, but she looked pointedly at her watch, then tapped the cash tray. My empty wallet made me unwelcome.

When I asked about the man I would marry at the beginning of our session, I did not imagine the ten minutes I paid for would pass so quickly and end so mysteriously. I wondered about her words for more than a decade, right up until my ALS diagnosis twelve years later. That day, I finally got the answer I sought. Doors slammed in my face. All around, clock needles spun backward. My end crept forward in every shadow.

Now, I rely on Evan to bathe, feed, and dress me, to keep me steady when I use my walker in the bathroom, even to wipe me after I use the toilet. He holds all the crumbling pieces of my body tight in his hands, as though trying to keep them safe until the miracle pill that can put me back together again finally arrives. My marriage looks nothing like it did when we were twenty-one or twenty-five, or even last year. Playtime is over, and we struggle daily to survive.

However, I realized as Evan delivered medication into my body via my brand new feeding tube, that what really matters remains unbroken. Even after all we’ve lost, he still loves me, and I will always love him. That knowledge is the bedrock of my existence, and it has yet to crack. Together, we chase happiness through a tangle of feed lines and IVs, not ready to surrender to how we live now. Side by side, with white knuckles and bloody nails, we crawl forward.

Benvolio: Romeo, away, be gone! Stand not amaz’d, the Prince will doom thee death if thou art taken. Hence be gone, away!

Romeo: O, I am fortune’s fool!

Romeo And Juliet Act 3, scene 1, 132–136

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 Wind in the Door

Only two more days until my Tobii Dynavox comes. I cannot wrap my head around this. I’m getting back the ability to text and talk on the phone. I will be able to write emails and blog posts at a more normal pace (right now, my fingers are a total mess, so I type like a snail).

Change is in the air, a wind is in the door. My voice is slipping away, and technology to replace it is stepping in. The arrival of my Tobii Dynavox will be an emotional time; I’m scared I will cry.

 

“I wish human beings couldn’t have feelings. I am having feelings. They hurt.”
― Madeleine L’Engle, A Wind in the Door

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.

Don’t Talk-A-Thon: Part 1

Today is the Don’t Talk-A-Thon, a fundraising event in which participants vow an hour of silence in support of those who are forever silenced by ALS. In honor of this special event, I am sharing a very personal and painful story about the first time that ALS stole my voice. Remember, for me and countless others with ALS, our voices disappear permanently as a result of this awful disease.

The Sound and the Fury

Before ALS, I associated silence with prayer, reading, sleeping, being comfortable with friends. It was full of promise. Now, I know silence can be sheer terror. It falls like a knife from your hands to the kitchen floor, clattering around your bare feet. It paralyzes you with its chaotic power.

I knew it was coming. My voice is fading to nothing; that was established months ago. I hadn’t really imagined what it would feel like, though. I may have had a vague notion that permanent laryngitis awaited me, but I understand now that it’s so much more than that. I learned the truth when I spilled a glass of water by my computer (weak fingers). I couldn’t lift the computer out of the way (weak wrists). I imagined songs, stories, and photos being leeched out of the laptop into the puddle. Panicked, I called to my sister to come help me.

No sound came out. My tongue was heavy in my mouth. I felt like I had been slapped in the face, my breath stolen from my lungs. On the third try, I finally understood. This was my disease, a preview of what’s ahead. My horror rendered me motionless. My sister was in her room talking on the phone, but she might as well have been on another planet. I hit the alarm on my wheelchair, but Laura couldn’t hear me through her door. Malka raced to me, recognizing I needed help, but she couldn’t understand what was happening, and what could she have done anyway? I wanted to scream.

I broke into tears while Malka ran in frantic circles, panting hard in her desperation. A hot, fuzzy tingling sensation climbed the back of my neck, and all I knew was that I needed Evan. Despite my clumsy fingers, I managed to text him that I needed help. He was at work a few blocks away. He flew to me, his footsteps pounding down our hall faster than should have been possible. He crashed through the door and was by my side before I could blink away my tears, as if by moving quickly enough and wanting it badly enough, he could save me.

Evan held me and I sobbed for a while, calming down once I realized I was making a lot of noise with my crying. That was reassuring, but when I tried to speak, my enunciation was too messy to understand. My words sounded like a sad foreign language.

I resigned myself to the fact that I wouldn’t be speaking intelligibly until I recharged. A storm rolled in from the mountains, filling our valley with night dark clouds so it seemed far later than four in the afternoon. The lights in the living room became far too yellow and dim. My bird screamed then, and fluttered around his cage. I checked his food and water; there were plenty of both. His favorite nap area was clean. Laying back down, I felt awful that I couldn’t figure out what he needed. He chirped and squeaked, but it meant nothing to me.

I drifted off watching him flap around, never figuring out what he was trying to say. I remember thinking, though, just as I lost consciousness, that I had only narrowly escaped my own cage. My stomach rolled and I got dizzy imagining the door still open, waiting for me.

Deeper Than Bone

Since my diagnosis, I have come up with elaborate methods for convincing myself I am OK with losing the chance to be a mother. I have a list of why kids would destroy my marriage and sense of self. I avoid places where children flock and families are happy (Salt & Straw Ice Cream Shop down the street is off limits on sunny weekends). I even tell myself this story: Evan and I get our wish; we have a baby! However, from the very start, we know something is wrong. The baby looks at us with a wicked gleam in his eyes. Before we know it, he is escaping his crib and biting our fingers and toes in the night. At school, he puts slugs in the other kids’ jello and sets fire to his library books just to deprive his classmates of the joy of reading. Next thing we know, he is a juvenile delinquent. He kidnaps us, loads us up in a stolen car, and keeps us captive in an abandoned hacienda in Argentina. It’s not so far-fetched. Think about it. Every maniac and psychopath you’ve ever heard of had a mom and dad. It’s totally possible Evan and I have narrowly avoided creating the next Voldemort. I like to think that.

Every now and then, though, I’m caught off guard and have no time to conjure images of evil Baby Doboga. Like when Laura and I were watching “New Girl” and a commercial for a fertility clinic came on. A picture of an ultrasound drifted across the screen and I made this sound. I didn’t know humans could make a sound like that. It was instant and animal. I can’t even tell you what I was thinking. I’m not even sure I was thinking yet. My reaction was pure instinct. Then pain and fury rushed in, and I ground my teeth and shut my eyes to hold it back. I don’t want to feel that again.

Laura understood right away. She grabbed the remote and switched to “Broad City,” a show featuring the funniest and least maternal women I’ve ever seen. “It’s fine now,” she said. “What are you thinking we should do when mom visits next week?”

That’s how we erase it, or at least bury it. We have to. A person can only feel so much at one time. We have to pick and choose which hurts to feel. However, I still think of that awful sound. Whatever savage pain made it lives on in the shadows of my heart and the twist of my intestines, deeper and stronger than my bones.