Twenty Years to Ten

I like this boy. He seems like he cares. Once a week he comes to my room and talks to me about his life. He plans to be a personal support worker. I think he would make a good one. 

After I was diagnosed with this disease I had visitors for a while. My wife, kids, relatives, and old friends. My company now includes a runny meal a few times a day, a bitter instant coffee in the mornings, and the occasional seagull perched on my windowsill.

The boy’s name is Ethan. He’s a good kid, a volunteer at the long-term care home I live in. I can sense he means well. From the way he smiles at me, how he positions my television so I can see it better, and the careful way that he draws back my curtains so I have a view of the clouds from my wheelchair.

“So you look alert today!” Ethan says.

I try to nod. I hope he sees it.

“Well, if you just sit there all day you won’t get to run around under those lovely clouds out there!” he jokes.

I smile in my mind. He knows I think it’s funny. I like his energy. It brightens the dull days I tend to have more often than not. I watch as he glides across the room. His steps are brisk and he moves with purpose. I see how his legs grace the floor, like a dance.

“So I talked to my mum last night,” He grins. “She says being a support worker isn’t the best career for me. It doesn’t pay well. And she says I’ll need the money. She thinks if I go into business like my brothers, maybe get a job at a bank somewhere, it will be better for me.”

Ethan talks about this topic often. He is torn between pursuing his passion for helping people and making a good living. It was a cliche. Why is there always this dilemma? Between doing what your passion is and making a living? Why can’t it be simpler than this?

“What do you think I should do?” He looks at me, patiently awaiting a response. “Just kidding,” he winks.

There’s something about him that reminds me of my youth. In those days, I was alive and full of spirit. I had the whole world in front of me, a future laid out, with dreams larger than the tallest mountains. I worked hard, had ambition; and drank and savored all of my hearts’ thirsts. Life was good. 

Then it all sank into an oblivion like a cinder block in a black, bottomless ocean.

*

It started with my legs. I was walking with my wife on a beautiful day. The sun shone high in the empty pale blue sky. A gentle stream meandered in the woods beside our well-worn earthen trail. The chickadees and blue jays sang songs in the early days of spring. I could hear the soft wind, rustling the vibrant green leaves of the maples and oaks, as our feet plodded along the damp earth. We loved to walk, especially on trails in the serene landscapes near our farmstead home. 

Today was different. My legs felt tired and weak. It was as if overnight their veins had been injected with liquid lead. Occasionally, I would stumble on our walks. It was common to trip over an unseen root or rock. This morning it was as if every step required a meditative level of attention.

At first, I thought I had just danced too much the night before. We had spun the last night away at my youngest daughter’s wedding. It was a glorious evening, full of fun, laughter, and emotion. I remember winking at my son, and exchanging grins with my older daughter, as I twirled my wife in a pirouette in her flowing emerald dress. My youngest daughter looked as radiant as a summer sky. Her newlywed husband, smiling from ear to ear, looked like a young prince plucked straight from the pages of a fairy tale. It was the last evening I would ever feel normal again.

I remember walking, the earthy trail beneath my feet. The smell of fresh-bloomed flowers in spring. The glowing warmth of the beaming sun on my face. And then, a leaden foot striking stone as I fell to meet the hard earth below. 

I never fall.

*

Three months later and a short man in a white coat who looked too young to be a doctor — one of those Dougie Howser types — sat across from me and delivered my death sentence. Lou Gehrig’s Disease, or ALS for the scientific folk — some long name that I still can’t pronounce. Not that I could pronounce anything anyway. I can’t speak. My words come out as garbled as a one-year-old’s with a mouth full of organic mushy sweet potato.

“mmfhmam”

“gbamfmfhh”

 I guess that’s one of the problems with this disease. You can’t talk to anyone. You can listen, but what good is listening if you can’t talk back? 

Talking, now that was something I was good at — the public speaking championships I won, the debate contests I conquered, and the countless conferences I ran to sway the opinions of everyone around me. I had succeeded for the simple reason that I could deliver words and communicate my grand ideas. It’s incredible how much life can change when you lose this ability.

The loss of the use of my legs, that I could take. I felt the sting, but after a while, I could tolerate it. But talking, that was my lifeline. And to take that away was a gash in my abdomen, where no bandage could cease the slow flow of life-supporting blood.

The doctor told me the average survival time is three years. Unfortunately, I’ve been breathing in this chair for over ten. After I hit the ten-year mark, the doctor said I could even make it to twenty.

Twenty years.

Before, that would have been a blessing. Now, it was a prison sentence.

*

I remember the last time I saw my wife. Her brows were furrowed, her mouth razor thin.

“You have single-handedly destroyed this entire family.” She told me. Not an ounce of cheer stemmed from her blunt voice.

I recall trying to say something. Trying to reply. But the words wouldn’t come. I remember trying to scribble the words onto the page in front of me. My hand shook uncontrollably as the pen drew a snaking letter “I” across the page. She didn’t wait for me to finish. Looking up, I saw her flowing dark hair glint in the light for the last time as she turned to leave.

I think back to the final moment my kids visited. The three of them standing in front of me, sadness etched on their faces. An air of discontent and animosity spread like leaking gas to fill the corners of the room.

“Dad, what were you thinking? Look at the trouble you have put us in,” My youngest daughter said, her face aghast with disappointment. “Mom doesn’t want to see you anymore.”

“Us too dad, this is it. We can’t see you anymore,” my son said, his shoulders slumped like a wet rag. “The damage is done. There’s no coming back from this.”

I remember attempting to call out, to explain everything, to let them know everything was a misunderstanding. And the sounds that emanated from my throat instead.

“Mfmhmuf”

I recall seeing the back of their coats as they vanished behind the door; hearing the sounds of their boots echoing down the hall as they left me in my chair alone.

I can remember the last day my best friend and business partner visited me in my room. We had been through it all together, from frequenting pubs as roommates in college, to standing beside each other as we took our wedding vows, to building our business together from a scrappy start-up to a worldly behemoth. He was there for me as much as my family was during the roller coaster of the last few years. The only one left that continued to visit me when no one else would. 

His coarse black hair was speckled with gray and his aging face looked worn and tired. He looked at me behind black-rimmed spectacles with eyes that wore a longing sadness wishing things could have been different.

“I’m sorry my friend,” he said. “This is it. My family needs me and I can’t continue making these visits. It’s not in the best interest of both of us.”

My voice croaked. Why did it have to be this way? If I could just tell him what I wanted to say.

I remember the gaping hole that I felt after that day. The loneliness that followed. Those long years of solitude and emptiness. I didn’t need to be sentenced to prison, no matter what the public cried out. I was already in a cell behind bars.

*

It’s still astonishing how you can go from being the director of one of the world’s largest energy companies to a cripple with no wife, friends, or kids. That was the thing. No matter how hard you worked, how much ambition you had, or how successful you were, if you didn’t do things right, eventually it would all come tumbling down. You would think that when your world collapsed, the people you loved would stay with you. That even if your character failed, they could see that what you were doing was for them. 

Was it for them? I still ask myself this question. They didn’t see that it was. They all left, and disappeared into the wind, like mist.

I guess I had it coming for me. It’s funny how it all happens at once. When the scandals at the company surfaced after my illness, the public started to realize who I really was as a person. The destruction of livelihoods and entire communities from the bad decisions I made. The unethical dealings and political corruption I was implicated in. The lawsuits that emerged that nearly bankrupted me and my family. The falsehoods that I buried from everyone that I knew. Some say I really deserved the ensuing social humiliation and rejection.

Maybe I was a bad person. It’s strange how you start out with good intentions and want the best for yourself and your family, and then see your character crumble as you chase things that you never really wanted to begin with. How what you thought you wanted in your youth slowly changes color like a chameleon until you no longer recognize your former self. How the people around you — going through the same bitter thing, trying to climb the never-ending ladder of ambition — reinforce the very thing you need to turn from.

And the lessons you learn, you can’t tell them to the people in front of you. The next generation. That’s the most painful part. I have realized I made mistakes. It took me a long time. Long enough that everyone I love is gone. I couldn’t make the apologies I wanted to make. And I sit here in a wheelchair looking out at a cloudy sky, with a boy named Ethan who has all the hopes and dreams for a lifetime. I want to reach out and tell him. I want to grab him by the arm and shake him. 

“Be a good person.”

“Stay true to who you are.”

“Be there for those you love.”

But all I can do is sit, try to nod, and let life pass, hoping to make twenty years, ten.