You Can Go to Hell and Back

You Can Go to Hell and Back

You Can Go to Hell and Back

Finally, you were boss. Your quinoa-powered brain gathered all that information over the years. You were ready to make a deposit, ready to ease into an easier life—your ideal life. You pulled into your knowledge bank. But shit. You arrived at 5:05 and the bank was closed.

There was a handwritten note on the door:

We’ve taken your sponge cake mind and put it in a safe deposit box—don’t worry!

We’ll leave you with the leftovers so you will still appear on the outside to have it all—all the responsibility you craved at 15 years old.

But now the gremlins have climbed inside your brain, and they’re sliming your nerves. They’re actually dying out—the nerves, not the gremlins.

Watch out, your joy has been put in a jar, next to laughter on a shelf.

As you walk to make yourself a cocktail of happy thoughts, the ground beneath you pulls away. You’re standing—if one can stand in these situations—reaching up, falling down. The shelf is out of reach.

Now you’re standing in a very hot room—you’re pretty sure you landed in the rumored place called hell.

“It’s real,” you mutter. The air is heavy, a sulfur smell overwhelms you. And then you gaze around, looking for signs of life. You see long, dark shadows with dark corners in the room.

Suddenly, your hand goes weak and starts to wither away. You drop the sugar that you didn’t realize you were holding. It turns into a thick syrup and now you can’t move your leg.

You shout, “Help!” but your voice is gone. Your mouth gapes open, trying to push the voice out, and a bug flies in. You start coughing. Stuck in syrup, your hands are the size of a baby’s now. You feel the tears come. They sting. If only you could have made that cocktail. That’s why procrastination is your downfall.

A man walks into the room—it’s more of a cavern, you decide. He’s tall and skinny, wearing a black denim coverall, fitted. His shoes are engineer boots with a pointy toe. He wears a scarf that reads,

Deviling is hard work.

You look at him, a knot churning in your abdomen. You notice pulsations in your arms, legs, and torso. You lift your arm and wipe your brow with your forearm.

“Hi, I’m Tom, I’ll be your concierge.”

He smiles at you like a toothpaste ad.

“I’ll be right back,” he says.

But wait, you mouth, your eyes plead. You stand in your spot, your legs starting to feel weak.

He comes back a moment later pushing a heavy cart: a wheelchair, a BiPAP machine, a ventilator with tubes, a feeding tube and pump, bottles of medication, adult diapers, piled high.

The coveralled man picks up an object—a rollator—and hurls it at you. You duck, the whirring sound goes over your head, and the rollator lands behind you.

Next he puts the medication in a zippered tote bag along with a plastic bottle of water. You suddenly notice a pile of empty water bottles discarded in the corner. He tosses the bag to you and it lands at your feet.

“Open it, and take the meds. They might help. They might not,” he adds, shrugging his shoulders.

You crouch down, your knees feel stiff. You attempt to open the bag but your hands won’t work.

He rolls his eyes. “All you neuro-degenerative disease people are such sissies.”

Your cheeks get hot, anger rushing through your body. He walks over and unzips the bag.

“I suppose you’ll need me to open the bottles and water,” he says, taking a small plastic pill cup. He empties the meds into the cup, opens the water, and hands them both to you.

Quickly, you grab for the medicine but your hands won’t open. The man opens your hands and puts the medicine and the water in them.

You swallow all the pills, your hands start to open. You want to thank him, knowing you wouldn’t have a voice, but you do.

“Thank you,” you say, your voice raspy but audible.

He goes back to his cart and lifts the wheelchair, lifting it over his head. He gets ready to throw it, digging in his feet and bending at the knees.

“What are you doing?” you shout.

Ignoring you, he throws the wheelchair at you. You flinch, but it lands several feet away.

He goes back to the cart and continues to throw everything until it’s empty. He wipes his hands together, then walks back to you.

“It’s not your time yet,” he says plainly, “so I’ll be sending you back with this gift.”

He pauses, then says, “You’ll need most of this eventually.”

“Eventually? What does this mean? Has there been a mistake? I feel healthy,” you say.

“Feeling healthy and looking healthy don’t mean anything. They’re superficial. You’re not healthy. And no, it’s not a mistake.” He blows some debris off his fingers.

“But why me? This has never happened in my family,” you cry.

He rolls his eyes again. “Give me a break. It can happen to anyone. Plus, I checked, and you have the genetic form, so you were bound to get it.”

“The genetic form of what?” you ask. You stretch your arms out straight and uncurl your hands.

The man with the scarf starts to usher you to the middle of the room. There’s a pad there that you don’t recall seeing before. He grabs your arms and puts you in the center. Then he efficiently—

Is it only 20 seconds later?—surrounds you with the stuff he threw at you.

“I’ll be seeing you again. Remember, the name is Tom.”

He turns around and walks out of the room, snapping his fingers and humming.

You’re back in your living room now. You are surrounded by the items the strange man named Tom gave you.

What does this all mean? you wonder.

You walk over to your couch, grabbing your laptop. You start googling everything that happened, what type of neurodegenerative disease causes…

You wait for Google AI to spurn out its answer.

Your jaw drops, your stomach tightens, tears stream down your cheeks.

“Tom!” you shout.

Big AL’s Trucking

Big AL’s Trucking

Big AL’s Trucking

Back in my 20s, I had a friend—let’s call her A because her name started with an A. And let’s call me L because my name starts with L. Who were we? It’s hard to label things, but Bohemian chic comes to mind.

We joked, ironically, about starting a company called Big AL’s Trucking. We envisioned owning a fleet of trucks and running a business. It was just a silly, lighthearted joke—a running gag.

Little did I know that, since Big AL’s Trucking never came to fruition, it would manifest into the Big ALS for me.

Who would’ve thought that this hyper, determined woman would one day face amyotrophic lateral sclerosis? That at the still-young age of 50 (because isn’t 50 the new 30?), I’d be staring down a diagnosis like this.

Seriously, I turned 50—an age I dreaded. The weeks leading up to my birthday were filled with a deep, suffocating depression. Then, one day, my hand just stopped working.

It was strange. Sudden. How could I lose function like that in a single day? I sat with the loss, trying to process it, knowing it couldn’t be age-related. After all, I’d been going, going, going for 50 years. This didn’t make sense. The weakness wasn’t minor—it was profound. I couldn’t turn the key in my car. I couldn’t tie my shoes. I couldn’t even switch my electric toothbrush on and off.

So, I called my doctor. I assumed it was a nerve issue, maybe related to the chronic scapular winging I’d dealt with for years. The doctor examined me, took a detailed clinical history, and ordered an EMG to see what was going on with my nerves. He suspected the problem stemmed from my brachial plexus—the network of nerves coming from my neck and leading down my arm. He noted that it didn’t seem to involve just one nerve, and I didn’t have the common symptoms of carpal tunnel syndrome.

But here’s the thing: as a woman, I’d been conditioned to assume nothing would show up. That it was probably psychosomatic. Even though the weakness worsened with exercise or activity. Even though it was unmistakable. No more downward dog or push-ups for me.

The EMG—the one I assumed would show nothing—came back with diffuse findings. Whatever that means. The physiatrist said I needed to see a neuromuscular specialist. She mentioned that my test could indicate motor neuron disease. 

Disease? That didn’t sound minor. I had never heard of this diagnosis.

The neuromuscular doctors were thorough. My clinical exams were, by my interpretation, off the charts. They said they needed to test for mimics: HIV, hepatitis, Lyme disease, heavy metals, and autoimmune disorders. Never in my life did I imagine wishing for something like MS or HIV. But now, I was begging. “Please. Anything but this.”

They ordered a follow-up EMG for my leg. Unfortunately, all the lab work came back negative.

I sought a second opinion at another top hospital. They reviewed my previous notes and conducted their own physical exam. Their findings also pointed to motor neuron disease. I asked, “But what else could it be besides ALS?”

The doctor, a top neuromuscular specialist in Boston, shook his head. “Nothing.”

By this point, I’d already started to come to terms with the possibility. The initial shock had passed, but hearing it reaffirmed felt like a hammer to the chest.

Let me stop here for a moment. This is absolutely terrifying. And besides some twitches, exhaustion, and hand/arm weakness, I don’t even feel that different—at least for now.

But I can’t imagine a worse diagnosis. My kids—oh, my kids. I’ve been essentially solo-parenting. My husband travels constantly for work, often gone for weeks or months at a time. One of my kids has their own complex health issues, and no one else knows the ins and outs of supporting them. And my sweet 11-year-old—how can I tell them?

Beyond my family, my house is not accessible. I live two hours from Boston, where my specialists are. I have limited means and financial insecurity. How will I keep working as my body deteriorates? I’m unprepared. This diagnosis is unfathomable, incomprehensible.

Almost three months to the day of my first EMG, I traveled to Boston for further testing. Three hours. Three neuromuscular doctors. Dozens of needles and electric shocks. An ultrasound of my tongue. Finally, they sat me down.

To summarize, they said: “These findings, along with your physical exam and symptoms, indicate ALS.”

I knew this was coming. I’ve been reading about ALS for three months. But now it became definitive, no more testing needed. Five neuromuscular doctors all agree.

Now what?

Luckily, I’m the determined type. I pushed to be seen as soon as I knew something was wrong. Most people take a year or longer to get a diagnosis, I got it within six months. Now, I can start medications that might slow the nerve damage. But what does that leave me with? Ninety percent of people with ALS die within a few years. I’m literally 50 and fucked.

How could I have possibly known that joking about Big AL’s Trucking would lead to the Big ALS a quarter of a century later?

And where’s my imaginary character Tom to pop in and say, “This has all been a terrible mistake”? Wouldn’t it be great if I could conjure up a cure?

In the meantime, I’ll keep processing, crying, planning, and getting on with life. I’ll have to eliminate so much from my house, sell furniture, donate truckloads, and find an accessible home closer to my specialists. And when they bury me, please fill my casket with all the things that bring me joy. Sure, it’ll be heavy. But I’m not ready to give anything up just yet.

 

Ballad of a Dying Dream

Ballad of a Dying Dream

Ballad of a Dying Dream

As I watch the world go by, I cry. What has the world become? What is the future for our children? How could I have been so gullible and naïve, 19 and 12 years ago, when I became pregnant, yearning for family and offspring?

How could my instinct to procreate possibly know of the future? 2015, 2016, 2020, 2021, 2024, 2025. Sure, we can get on with our lives. We can fight the system. But that system is already dead, taken over by the greedy rich. We’ve seen this before in history.

I was a pawn, a believer in dreams, a believer in the country I live in. Yet, I’ve never uttered the words, “Proud to be an American.”

Why not have faith in our country? How could Americans become so brainwashed, so dead to the truth, to the facts, to the hopes and dreams, to our environment, and to our citizens and humanity across the world?

Americans are angry at the two-party system, so they look for other leaders, such as Jill Stein—a hypocrite and Russian asset—or Robert Kennedy Jr.—a privileged conspiracy theorist, hypocrite, womanizer, and heroin addict.

How can we move on with our lives when our history is steeped in lies? Only the lucky among us have learned to unlearn the history we were taught—a history told from a colonizing, white perspective.

A country raised on racism and women as second-class citizens. A country denying more than two genders. A country with politicians criminalizing reproductive and LGBTQ+ rights while targeting drag queens reading to children—ignoring, all the while, the children dying from gun violence and touting the Second Amendment as justification.

How can we move on with our lives when we say, “Everything has to change—the people are suffering,” and yet now everything will change, but only for the worse, oh, the absolute worst!

Still, we have each other—our communities and people like us—so maybe, just maybe, we’ll muddle through the future years, even as the changes we face will likely bring only more suffering, despair, and inequity.

The Night I Met Jack

The Night I Met Jack

The Night I Met Jack

I remember the night I met Jack. It was sometime after 1:00 a.m. on November 30th, 1999. Christina and I had been hanging out after work at the downstairs bar at Penang’s, a Malaysian restaurant on the Upper West Side of Manhattan. The bartenders there treated us well. Was it free drinks, extra booze, or engaged conversation? It’s hard to recall, probably a combination. The restaurant closed at 1:00 am, and Craig invited us to meet him after work at a bar down the street. We went ahead of Craig to Peter’s on Columbus Avenue between 68th and 69th streets. I was warm from the Cosmopolitans and didn’t notice the cold November night. The taxis and cars whirled past us. 

Christina had a crush on Craig, but Craig had a crush on me.

Craig walked in and breezed past us without a glance. Christina pulled her sad puppy dog face. “He’s ignoring me,” she whined. Craig was talking to a couple of guys – one of them was Jack, my future husband.

I was pretty sassy back then. I walked up to Craig and said, “Hey, Craig, you walked right past us. Is that any way to treat your friends?” I teased.

Craig, with his blonde rockabilly hair, smiled at me, his grin wide. “Hey, meet my friends, Andrew and Jack. Jack’s in the band RoxVox.”

They both said hello, and I immediately had a visceral reaction to the tall man with splotchy blond streaks in his dark hair. His skin was pale and effervescent. My heart fluttered, my gut tightened, and a smile painted my face.

“Oh, cool. Well, nice to meet you guys.”  I said nonchalantly. “Say, do you want to dance?” I said to the man named Jack.

He smiled and spoke with a British accent. “Where are we going to dance?”

“Outside on the street! I have a boombox with mad bass. We’ll throw a dance party on the street.”

The three men grinned. “Sure!” They said, like obedient dogs.

I pulled my boombox out of my handbag and expanded it to half my size. “Could one of you carry it? It’s always a bit awkward when I have to do it myself.”

“No problem,” the British guy said to me. “Can I get you a drink?”

“Sure, I’ll have a cosmo,” I said, locking my eyes with his.

“You’re gorgeous,” he said, his sultry voice luring me. I blushed.

We had a couple of drinks at the bar. Poor Christina was sitting at the end of the bar, nursing her drink, looking down, and concentrating on her drink. Poor self-pitying, Christina. She’s missing out on a good time.

“Hey, Christina, come join us!” I encouraged, keeping an eye on Jack, as he would never leave my sight now.

Andrew said, “I’m ready to dance with you, babe.” I glared at him.

“I have a name. Don’t call me babe.”

“Sorry. Yes. I just got carried away,” he said solemnly.

The five of us walked out of the bar, drinks in hand. Jack carried the boombox. I like him, I thought to myself. We got outside, and I put on the beats. Kenny Loggins’ “Footloose” blasted out, and Christina and Andrew started dancing. Blood rushed to my cheeks; so embarrassing.

“Oh, that wasn’t supposed to be there! That was a joke from a dance class earlier.” I switched discs. This time, it was Moby. Moby I could groove to. I started dancing with Jack. He was a fierce dancer, and the three others stopped and watched us. Soon, the 2:00 a.m. crowd circled around us, drawn in by the music and the energy of our impromptu street performance.

Someone from an apartment above yelled out of the window, “If you don’t shut up, I’m calling the cops.”

Jack turned down the music.

“Hey, let’s go back to my place and order Chinese food,” said Andrew, his corkscrew curls bouncing on his shoulders.

Jack looked at me. “Are you coming?” His almond-shaped eyes mesmerized me. I smiled at him. “Sure, I’m game, but I don’t want Chinese food.”

“Yeah, me neither. I never eat and drink,” he said to me, a slight smile parted his lips.

I folded the boombox back into my bag, and we started to walk down Columbus Avenue to Andrew’s place. The air hung heavy with the scent of damp concrete and a hint of cigarette smoke, the remnants of a bustling evening fading into the quiet of the late hour. The night air was crisp and biting, carrying the faintest whisper of the Hudson River in the distance, mingling with the earthy coolness of Central Park just a block away. I was tipsy and twisted my ankle on a curb in my 4” heeled boots.

“Ouch!” I said, leaning down, rubbing the pain away. “I don’t know if I can put pressure on it,” I said, discouraged.

The three men all said, “I’ll carry you!”

I looked at the three of them: Andrew with his salt and pepper corkscrew hair, Craig with his Colgate smile, and Jack, perfect in every way. “Sure, thanks, Jack,” I jumped on his back, and he carried me to Andrew’s place. I rested my head on his broad shoulders; his leather jacket cooled my flushed cheeks. 

Christina was lagging behind, whining. Poor Christina. “Wait for me!” She complained.

We arrived at Andrew’s apartment. Jack set me down gently, and I smiled up at him. We sat down on Andrew’s L-shaped black velour couch; the air hung heavy with the scent of stale cigarettes. Jack brought me a drink from the kitchen and sat beside me. 

Christina sat down next to me on the other side. “Craig’s not talking to me. He doesn’t like me. Will you talk to him?” she pleaded.

I leaned into her and answered quietly, sympathetically, “Go talk to him yourself.” Christina moped and took another sip of her drink.

Jack put my hand in his, and I felt an electric jolt of energy, like the start of something I couldn’t yet define. I felt a connection to him, one that would never leave me. The rest is history.

If it Were My Last Meal

If it Were My Last Meal

If it Were My Last Meal

My last meal would definitely include pizza. I wish I had made pizza tonight. I can’t remember the last time I had great pizza. Oh, yeah, it was a white pizza with pesto, grilled chicken, and roasted tomatoes.

I’m really not happy writing about food. Why was I put on this Earth? As a human? Nobody told me on that cloud that if I chose to be a human so I could wear cute shoes, that I would need to eat and have enjoyment eating! What was it like back then? Was it even a cloud? It could have been a star. That’s more like it. So, on my star, I could definitely… not see all the people enjoying food, crying, and dying from lack of food, wasted food, burnt food, raw food, dirty food. It’s a world obsessed with it.

And does that mean that the world revolves around humans? What does an ocean crave? Doesn’t the ocean feed off of the animals and sea life living within it? What about the Earth? Does it ingest what lives upon it? I think this might be flawed thinking from the humans. Is it my retrospective thoughts? Living on this Earth, remembering my life before food on my precious star?

“Your questions are burning. So deep, I never thought of it like that. But really, it’s not easy to be thinking of such profound questions when I’m so hungry. Your wit is sharp and your language garlicky, but I’m afraid I have to say no. No, I don’t agree. Now, you may not agree with me, and that’s okay, but what’s not okay is that you were fighting the urge to enjoy your last meal. Don’t tell me you’ve never liked food with its velvety, rich textures and tastes. This is an unreasonable statement on your part.”

Oh, you are asking questions. That’s right, but really, your tactics are slimy and if I were to give them a color, it would be avocado green, not to be confused with split pea soup green, which in and of itself is rather pukey looking. But what we have provided for you is the most delicious pizza, and surely even you can’t deny the aroma of the yeasty crust, the pesto sauce. Ooh, the grilled chicken. You what? You refuse to eat?

“I shall push it back. It’s very possible we can make you eat that, and if you don’t ingest it by mouth, we’ll blenderize it and shoot it into your veins like TPN.”