Thursday, May 19, 2011

You Can Write About It

In the spring of 2007, I was asked to travel from New Jersey to Atlanta to meet with a client. The trip would be a quick one. A car service would pick me up at the ungodly hour of , drive me to Newark Airport, and leave me there to wait two hours for my flight. I’d arrive in Atlanta, take an hour subway ride to the client’s headquarters, attend a two-hour meeting, and fly home. There and back, all in one exhausting day.

I had been designing training for a local consulting firm for the past 3 years, and our client was one of the biggest broadband and cable providers in the country. The trip seemed excessive and more than a little ridiculous. Obviously, both parties had the technology and savvy to conduct our meeting virtually; but I understood. Sometimes, the client just needs a warm body to smile, rest a hand on a weary shoulder, and say, “everything is under control.” And sometimes, the client just wants to scream at you. You never know until you get there.

I managed to get an inadequate two hours of sleep before it was time to wake up and get ready to greet my driver. I arrived at the airport, downed a surprisingly good cup of coffee, and plowed through two magazines before I finally boarded the plane. I sunk into my seat, lifted the window shade, settled my gaze on the tarmac, and let my mind drift. I thought about the adorably wacky things my little Ellie says and does (she was just a few months shy of her 2nd birthday and full of character); calculated the ratio of commuting hours to face time with the client (14 to 2?!); marveled and even seethed at the absurdity of said ratio; hoped my laptop behaved during the meeting and that, by some freakish mishap, I didn’t end up projecting the video of Ellie, clad only in socks, shaking her little hiney for the camera before her bath; but mostly, I thought about my dad.

Only days before, I had dropped Ellie off at my parents’ so they could watch her while I was at work. When we stepped inside their house, my mom walked quickly to the living room and asked if I could help her. My dad had fallen in their bedroom and she couldn’t lift him off the floor on her own. I set up blocks to keep Ellie busy and followed my mom to her room, where my dad was resting on the floor between the foot of the bed and the dresser. After he fell, he found enough strength to sit upright, face the bed, and get to his knees; but that was it. His arms were folded on the mattress in front of him and his head was resting on his hands.

I put my hand on his back and said, “Hey, Dad.”

“Hi, Erin,” he said as he lifted his head toward me. He looked completely exhausted and utterly defeated. “I’m having a little bit of trouble here.”

“I know. Let me give you a hand.” I straightened my backbone and tried to appear nonchalant as my mom and I each chose a side, hooked our arms under his, and used all of our combined strength to lift him off the floor and seat him on the edge of the bed. We positioned his walker in front of him, braced him as he carefully stood, and followed his cautious steps out of the bedroom, down the hallway, and into the living room where his lift chair waited for him.

When we reached the chair, my mom lifted it as far as it could rise and we helped my dad pivot his walker so that he drop carefully into the seat. Once he was safe in his chair, I kissed Ellie goodbye and told her to be a good girl. I climbed into my car, drove to work in deafening silence, quietly said good morning to the receptionist, sat at my desk, and cried. I couldn’t believe what had just happened.

Anyone who reads this might think I’m talking about a man in his eighties; but I’m not. My dad was 55 at the time. Fifty-five. Only two years before, his fit, athletic body was the picture of health; but now, it was swiftly being wrecked by ALS (aka Lou Gehrig’s disease) and I knew that what I had just witnessed was only the tip of a fast-melting iceberg. We all knew the road that stretched ahead of him – we had already watched my Uncle Ed travel down it. I knew that it wouldn’t be long before we would look back on the good old days when my dad still had use of his hands and arms, and they would feel like a dream. Things would never get better for him; they would only get more and more terrifying.

As I sat on the plane and reflected on that miserable morning, my eyes brimmed with tears and, surely to the dismay of the man sitting beside me, I leaned my head against the window and sobbed. I wondered what must run through my dad’s mind every time he realized another freedom was gone for good, and I wondered how scared he must be every, single day. I felt absolutely useless. I could help my dad off the floor and down a hallway. I could dial the phone or turn the Yankee game on for him. I could feed him a bite of his sandwich or give him a sip of his coffee; but all of that felt so small. I wished I had the authority or knowledge to do something meaningful for my dad; but I couldn’t think of a single thing.

And then, as clear as if someone had leaned over my shoulder and whispered in my ear, I heard the words, “You can write about it.”

I jerked my head toward the man beside me only to find him all-at-once trying to ignore me while eyeing me nervously with his peripheral vision. He was clearly not the one speaking to me. But someone or something did… and it made so much sense.

From a medical perspective, I am of no worth to the ALS community; but I can write. I decided on that plane, in the throes of 14 hours of travel for a 2-hour meeting, that I would put my dad’s story out there. Maybe a handful of people will read it, maybe nobody will… I don’t know; but it’s something. If one person walks away from it having learned something about the havoc ALS wreaks on those afflicted and the people who love them, I’ll consider it a win for awareness. (And believe me… the orphan that is ALS needs every win it can get.)

A lot has happened since that trip to Atlanta. I had another baby girl, Madeline, in 2009; I switched jobs; and I said goodbye to my brave, handsome Dad four months before he would have turned 58. I deeply regret that it took me this long to start writing – I think my dad really would have liked reading my blog and I imagine there were things he would have wanted me to say for him. But I feel him with me frequently, and I hope he feels free to be my muse.

I don’t plan to spend a lot of time with clinical speak about the disease. I’ll leave that to the eloquence of the good folks at ALS Therapy Development Institute. I’d rather use this blog as an opportunity to introduce you to my dad; tell you a little bit about him, what he went through, and the courage that never wavered; and talk about how life carries on without him. I miss him every minute of every day; I loved him more than I can tell you and I always will. I bet that you will fall in love with him, too.


Kinga said...

Thank you for sharing this Erin!

rACHEL said...

Thank you for sharing your story. My dad was diagnosed in March this year with ALS. My pap, my dads father, died from ALS when I was 12 and I remember mostly all of what he suffered through. I know what is ahead for my dad and it makes me so very sad every single day. Thank you for writing. Every story makes me feel not so alone.

lindsaydiz said...

Wow. You are a fantastic writer. My fiancee, Steve has ALS and I couldn't agree more with your statement about wanting to make a difference. I hope that your writing and your babies bring you peace and your dads memory stays with you always.

tharanp said...

"If one person walks away from it having learned something about the havoc ALS wreaks on those afflicted and the people who love them, I’ll consider it a win for awareness."

I wholeheartedly agree... good post! Im 24 years old and my mother is also diagnosed and two and half years in the run. I too have been trying figure out ways to bring my talents in ways to get the word out. I figured out few ideas. Im not doctor but hopefully might inspire some kid to get into medicine and find a cure. We can only hope! Keep writing!