So Much More (11 page)

“Hi,” he says quietly. The boys run to him.

I wait until the boys are at his bedside and he’s talking to them before I scan his face. When I do, I ask myself when I did this last…really looked at him. It’s been years. Most days, if I see him, it’s in passing at home. We talk briefly, and my eyes pass over him. I might catch a glimpse of the graphic on his t-shirt, or the scruff on his chin if he hasn’t shaved, or notice that his hair is in need of a trim, but I never really look at him. Not like I am now.

He’s pale, washed out with worry. His eyes look like they’ve been open for days and seen nothing but disappointment. His hair is rumpled and in disarray. He looks older, defeated, though the sparkle that only the boys can bring to his eyes is there behind it all. Today, he’s a shell, no longer vibrant. It plunges me back into the nightmare with my grandmother. My nightmare. I can’t do this. I can’t take this. Whatever it is, I can’t deal.

I turn to walk out of the room, and he calls my name, “Miranda.” It sounds like
please
, and
help
, and
I need you
. All the things I would usually run away from.

But I hear my grandmother in her last days, so I turn around and walk to his bedside. When he takes my hand, I ask, “What’s wrong?” Tears are threatening. I haven’t cried since my grandmother’s funeral.

He shrugs. “They’re not sure yet. They took blood, ran an MRI, and performed a spinal tap to try to narrow it down.” He glances at the boys like he’s not sure he should be talking in front of them and then swallows hard and shakes his head. “I can’t feel my legs, Miranda. They’re numb. I sat at my desk all day trying to figure out what was going on and trying not to panic, but it didn’t pass.” A tear escapes and he swipes it away. “I didn’t know what else to do. I tried calling you.” He swallows again. “I asked one of the teachers to bring me here. I had trouble walking. I didn’t feel safe driving.” He closes his eyes and turns his head away from me and tears seep through his pinched lids.

Just then a doctor walks in. He introduces himself and asks that Seamus spend the night for observation until all of the test results can be reviewed, interpreted, and corroborated.
     

We spend the night in the room with Seamus because I can’t persuade the boys to leave him and come home with me. I work through the night on my laptop in the corner of the room while they all sleep in the twin bed.

Daybreak brings a diagnosis—Multiple Sclerosis.

A neurological disease.

No cure.

I was right, he’s not perfect anymore.

My body was busy deconstructing itself

present

I silence the alarm on my phone by feel, unwilling to open my eyes just yet and give in to the dawn of a new day.
 

But when I do it’s darker than usual.

Something in the pit of my stomach tells me it shouldn’t be this dark.

My thoughts are stirring.

It shouldn’t be this dark
.

As I stare at the ceiling and then track my eyes from one side of the room to the other, I feel icy terror rise in me.

I close my eyes and try to push the terror down, but it’s lodged in my throat behind my Adam’s apple and threatens to cut off my breathing as if my lack of confrontation and acknowledgment is being punished and bullied. My body was busy last night deconstructing itself; it wants to be noticed for its efforts.
 

When I realize the dread isn’t going to pass, I open my right eye. Everything looks normal. Which should calm me, but it doesn’t, because I know when I close it and open my left eye…

Nothing.

I see nothing.

Just the blackest darkness I can imagine.

If nightmares have a color it’s this, darkness so black it blots out everything until there’s…nothing.

And then I start whispering to myself, “Why me? Why me? Why me?” I repeat it and repeat it until I’m crying, unable to speak. Until the words are choked off by silent sobs into my pillow. I’ve perfected crying silently, keeping it all to myself. And when words become impossible my mind starts racing.
Why does my body hate me? What have I done to deserve this? When do I get a break? I just want a fucking break! I can’t do this!

When the tears stop, my mind goes into Dad mode. Even in the midst of health crisis, it’s in Dad mode—problem-solving mode. I need to get in the shower and wake the kids up and figure out how to get them to school so I can deal with this.

After I’m showered and dressed, I wake the kids and set bowls, spoons, a box of cereal, and the gallon of milk on the counter. When I return to their bedroom Rory is already in the shower, Kai is dressed, and Kira is sitting on the edge of her bed with Pickles the cat under one arm and her eyes closed. She looks like she might be sleeping sitting up.

“Kai, I need to run next door to talk to Mrs. Lipokowski. I’ll be back in a minute, but please make sure everyone starts eating breakfast. It’s on the counter.”

Kai nods. He’s not a talker in the morning.

As soon as I step outside on the W…E mat I feel like a failure. Like I’ve failed at life. Being out in the open, out in the world, is scary. This is the place people label others. This is the place people notice when you’re different.

Walking next door is hard. I don’t know if it’s my imagination and my legs are even less cooperative today, or if seeing the world through off-kilter eyes is throwing me off, but I feel drunk. Oh, how I wish I were drunk. Drunk out of my fucking mind would be preferable to this any day.

The knock on the Lipokowski’s door goes unanswered. I’m sure they’re down at the deli getting ready for the day’s business.

Shit.

What the hell am I going to do?

Faith. I’ll try Faith.

The walk down the stairs isn’t really walking. My equilibrium is off, an unwelcome side effect of the nightmare in my left eye, and I don’t trust myself, so I sit and inch my way down the stairs like a toddler. I’m beyond humiliated by the time I knock on Faith’s door, and if it weren’t for my kids I would probably lock myself away in my apartment and never come out.

I knock twice, and as I turn to walk away, she answers the door to my back. “Good morning, neighbor,” she murmurs sleepily.

I don’t greet. I apologize. “I’m sorry,” I say it before I turn and face her.

And when I face her, her eyes are locked on my face, searching it, pulling every detail from the despair etched on it. She tilts her head and says nothing, but her gaze says it all. Sadness, mild shock, and the need to help are kindheartedly apparent. “What can I do, Seamus? Just tell me what you need.” It’s her soft voice, my place to land if I fall.

She’s in her pajamas, just a large t-shirt that barely covers her underwear. It’s old and the lettering on the front reads,
Our ribs will stick to yours. Rick’s BBQ.
I’m momentarily distracted by how awful that tagline is, which makes me want to hug her because it’s the first time all morning every cell in my body hasn’t been tied up in this shitstorm.

Then I want to hug her because I have access to the world’s greatest hugger standing right in front of me.

So I do.

I hug her.

And she hugs me back.

And I try not to cry.

But I fail and wet the shoulder of the awful BBQ t-shirt.

“Can you take the kids to school for me this morning and drive me to the hospital?”

She releases me. “Of course.” She’s nodding. “Of course.”

I wipe the tears from my eyes quickly.

“When do we need to leave?”

I check my watch. “Fifteen minutes.”

She’s still nodding, I don’t think she ever stopped. She’s lost in thought. “Okay. Meet you at your car in fifteen minutes.”

“Thank you.” I’ve said thank you thousands of times in my life. Most of the time I mean it to some degree. There are times when I’ve said it and felt the gratitude behind the words wholeheartedly, but I don’t think I ever understood what those two words truly meant until this very moment. Now I think I need a new phrase because
thank you
is insufficient in this situation.

She’s still nodding. Still thinking.

When I reach the base of the stairs, I look at her door, and she’s still standing there watching me. I don’t want her to watch me walk these stairs, to bear witness to the struggle because it’s not going to be pretty, so I stop.

“Seamus?” she calls. Her voice sounds lighter. “Remember that gift I gave you that pissed you off?”

I nod because now I’m thinking.

“I’m not telling you what to do, but if you didn’t already chop it up and make toothpicks out of it, today would be a good day to take it for a test drive.”

The nod continues because relief is pouring in.

The next several hours are a blur.

I explain what’s going on to the kids in non-scary terms, even though I have no idea what’s going on. Reality in non-scary terms is how I’ve always approached my kids with my disease. Basically, I tell them I’m having trouble with my eye, and that Faith is taking me to the hospital so the doctor can make it better. I’m not sure if it’s true, but that’s what I tell them.

I use the cane.

I call in sick to work.

Faith drives us and we drop my kids off at school.

Faith drives me to the hospital.

We wait in the ER for hours.

I see a neurologist.

He confirms MS is the culprit behind the blindness.

There’s a good chance it’s temporary.

But it could be permanent.

He consults with my doctor and writes me a prescription.

Faith drives me to the pharmacy.

The pharmacist gives me steroids in exchange for a swipe of my credit card that’s almost maxed out.

Faith drives me to pick up my kids from school.

Faith drives us all home.

When she kills the engine, and the kids jump out and run up the stairs to our apartment, I’m not sure what to do next. I’ve spent all day with her and we haven’t spoken two words to each other. She’s done everything I needed without instruction or direction because I was lost in my body’s breakdown. The last thing I said to her this morning was the thank you that wasn’t thank you enough. And I want to say it again. But again, it’s insufficient. So, I look at her and say the words I feel bone deep, “So much more than thank you.”

Her confusion is evident when her eyebrows pull together, a crease forming between them. She has a very expressive face. I’ve watched it closely all day and seen a wide range of emotions. “So much more than thank you?” she questions.

“Thank you isn’t enough to express my appreciation,” I sincerely clarify.

Understanding lights in her eyes and the confusion crease disappears as a soft smile slowly spreads across her face. “So much more than you’re welcome.”

I can’t help but smile, and then I let out a long breath.

“I have a few frozen pizzas. Mind if I come up and we have a Friday night pizza party?”

“I can cook, Faith. You’ve already done enough.” I feel awful that I’ve killed her entire day.

“I know you can. This is me asking for a favor. Maybe I just don’t want to be alone.” She’s still smiling, but a hint of sadness touches her eyes.

The tables have turned. I get to help her. I
can
help her. I unbuckle my seatbelt and nod once in all-out agreement. “Friday night pizza party it is. Let’s do this.”

The rest of the evening is spent in apartment three—the five of us eating pizza, Kira even tried a piece when Faith offered it, which is groundbreaking considering it’s not one of her normal foods; singing karaoke, Kira’s rendition of “Hello” by Adele was over the top dramatic and made all of us smile; and watching a Disney movie we’ve all seen dozens of times but still love.
 

It was the best ending to one of the worst days I’ve ever had.

She’s kind of a bitch

present

The chorus from “Evil Woman” by Electric Light Orchestra is blaring at me, unkindly waking me from a deep, somewhat enjoyable sleep. It’s Miranda’s ringtone. I know it’s juvenile, I know, but it’s an inside joke that takes the edge off and allows me to answer the phone with an unfeeling, “Hello,” rather than an aggressive
fuck you
.