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.

All the Places You Couldn’t Leave

All the Places You Couldn’t Leave

All the Places You Couldn’t Leave

Traveling through memory for the unhappy place. From a school bus turned home in humid, mosquito and snaked rural Tennessee, to being forced to move into your big girl bed when your baby brother stole your crib, climbing in and kicking until your parents rushed into see why the baby was crying, to hiding from your third grade teacher under the dark, cozy, quiet table with the half-wall behind it, to trapped in the kitchen with your drunk Nana slurring her words, to the loneliness of junior high + high school, loud hallways, screeching lockers, and the overwhelming scent of puberty. 

Feeling trapped. That’s your unhappy place. The 7th grade guidance counselor’s words stuck on repeat: “There are two ways to look at things. Glass half full or glass half empty. You’re a glass half empty person.”

Thanks for the update. How could it be anything else when that unhappy place is in your mind?

Don’t forget your childhood home, trapping you in dependence. Sneaking out the window to nowhere. Skipping school to drink coffee and smoke cigarettes at Classé Café, in complicit Amherst, MA, hanging with college students who exhibited their freedom.

Runaway to Boston one school morning only to call your grandpa to pick you up. Visits during the summer and on weekends. The chlorine smell from Nana + Grandpa’s pool, crisp, burnt grass dry and poking under your footstep, the burn of the hot July sun. A constant, Nana’s cigarettes, smoke filling the air, choking your senses.

The sacrifice of friendships and relationships where you put your needs last, to classes, courses, and jobs, and being bored by the mundane, to looking 14, using a fake ID to get into a 21+ club and not being allowed to go in. You yearned to feel the beat thumping through your body, as you dance the night away, with friends, elbowing some men away, sometimes making a sultry connection.

Those were your formative years. Threads through time: tangled in relationships where you often lost yourself, drawn into patterns you didn’t know how to escape. Longing for elsewhere, always carrying a quiet ache. The overwhelm that creeps in, unannounced.

That unhappy place actually follows you, sorry to say. 

Never satisfied, disappointed, overwhelmed, frustrated. It arrives in a moment as the inviting aroma of brewing coffee turns sour when the half & half separates, your face cringing, knowing the taste will be sour, not sweet from the cream, as it should, filling your taste buds with heaven. 

Unhappy when in those moments of love, lust, and bonding to a misunderstood word turning into a fight through a bed of sweat; loud, angry words piercing your ears, your heart.

Struggling to pay bills, loneliness, never reaching a goal. But you thought you knew your unhappy place— but it all changed when you read in your portal the EMG spurted out a suspicion of a terminal disease.

All of a sudden, all of those unhappy places became memories to hold onto —deep, ingrained memories to reexplore.

How everything changes when the worst thing happens. Now you know your unhappy place lands in your body as it dies away, with the twitches and pulsations on your body, the slow dissolve of muscle memory.

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.