By Mark E. Smith
I’m having lunch in Club 33 in Disneyland – and I’m with Amy, who my friends have only known from reading about her in my first book, published in 1995, 6 years after I graduated high school.
But, now it’s 16 years later after the publishing of that book – and 22 years since I last saw Amy – and in an uncanny twist not lost on me, we’re in “The Most Magical Place on Earth,” eating lunch at the hidden, exclusive Club 33, where a friend of mine has been kind enough to get me all-but-impossible reservations, jumping a 14-year waiting list, per Disney hype.
I struggle more than ever with the validity of my first book, and I’m glad it’s long out of print. Its title, Growing Up With Cerebral Palsy, was way too literal and boring for me as my childhood autobiography, but the publisher insisted that it would sell well to libraries and schools – and he was right. And, I dislike its simplistic, diary-type writing style – yet, people still note it as candid and enduring.
However, what troubles me most about the book is the emotional place I was in while writing it, where I was still struggling to come to terms with my mother’s profound alcoholism.
What’s haunted me is that while all other “characters” in the book are treated as they truly were, from my alcoholic father, to Amy, my high school crush, not a word was mentioned of my mother’s alcoholism – I painted her as a one-dimensional saint. The progression of her alcoholism was so painful to me at the writing of the book in my early 20s that I went from writing of her as a heroic figure raising a child with cerebral palsy to not being able to write about her at all. If you read the book cover-to-cover, my mother simply disappears by the end, an unexplained absence. It’s a book that’s both strikingly candid and full of absolute denial – and I’ve fought with that truth since the day it was published.
And, here I am, 16 years later, having lunch with Amy, my high school crush from the book, at Club 33 – and my mom is dying of cancer, her apartment being cleaned out and her cremation arrangements made. And, all of this is weighing on me. Amy thinks I’m tired from our being up all night talking, and I am, but I’m also struggling to both live in this amazing moment with Amy who’s just here for me without conditions, while simultaneously struggling with the fact that my mom is 3,000 miles away dying. It’s all just emotionally whirling around me like the constant visuals of Disney, itself, never knowing where to look because it’s all larger than me – overwhelming.
I haven’t had a real relationship with my mom in about 15 years. The initial royalty check from my first book went toward my mom’s stint in rehab where she chugged a 5th of vodka between there and coming to see me upon her “successful completion.” I’m sure now that my naive – but well-wished – attempt at her sobriety (and the many others), was just me trying to make things right – my mom’s health, the sentiments of the book, the sober relationship with my mom that I so desperately wanted. But, I never did make it right, I never found a way to sober-up my mom, not for my graduations, wedding, or the birth of my daughter. In my rational mind, I know now that only my mom could make things right through pursuing sobriety – but the loyal son in me still feels that I let her down in some way, that if I could do so much for myself and others, why’d I forever fail at helping my own mom?
And, what cuts deepest is that my mom didn’t fail me – she saved me. She was a troubled 20-year-old, with a son born with cerebral palsy, and when the doctors told her that there was no hope, that she’d best leave me to die, she took me home and somehow pulled it together to keep me alive. Yes, by the time I was 7 or 8, her addiction had the best of her – and, as a father, myself, I can’t fathom how she put alcohol before her children. But, in the most vital days of my early life, she was there for me – the only one. That can’t be overlooked or underrated in any narrative.
I previously saw my mother just a few days earlier at my sister’s wedding. She was a frail skeleton of herself – all treatments done, just waiting to die. My sister went through great lengths to make sure Mom had a custom-tailored dress, her hair and makeup done, looking like a woman of eloquence, stunning. And, yes, she was drinking. And, for once it was OK – it was all OK. I can no longer judge her; I can only love her for who she is, unconditionally, as she did for me over 40 years ago.
“I’ve never seen you look more beautiful,” I told Mom at the wedding, just living in the moment, all of our past erased by her just being there, my seeing her just as her, unconditionally.
After our lunch at Club 33, Amy and I caught up with the kids, and rode the rides with them at Disney, all in a magical universe. Later that night, Amy and I simply stayed up talking, our kids tucked asleep, where for a moment in time – two imperfect people trying to make sense of such present changes in our lives – we were just there in completeness for each other, ourselves, unconditionally.
The next morning, I awoke to my daughter singing as she packed. Amy was gone, having caught an early-morning flight. Her perfume was still in the air, a reminder of what had been for a moment in time. I had to put on a good face for my daughter, and while it took all my emotional might, I managed to get up and going. I had to go back to a reality where my mother was dying, where I was essentially a single father in a failed marriage, where I didn’t know if I’d see Amy again in a month, 22 years, or ever. But, I had to go back home, home to address it all.
I put on my Ray Ban sunglasses, heavy and dark, swung open the hotel room door, and headed out into the world – one that’s not perfect or fair or even understandable at times. But, at least I was re-entering a world where I was a more feeling man.
Upon returning home, my schedule for the work week was busy. I had a Medtrade planning committee project due and a conference call; I had a radio interview to do; I had a mid-week overnight trip to New York City involving a speaking engagement; I had all of my normal office duties and WheelchairJunkie.com responsibilities to tend to; my wife was supposed to be moving out of the house per our split-up; and, I had my daughter to care for. But, I could easily handle it all – just get it done, task by task, as always.
But, my mom was still dying. And, as much as I thought all was made amends just two weeks earlier at my sister’s wedding, I had to speak with her one more time – and on the deepest level. What was said and recognized at the wedding wasn’t enough. There was more to be said, to be healed. And, so in the middle of a crazy work day, I grabbed my cell phone and called my sister.
“I need to see Mom and talk to her tonight,” I said. “It has to be tonight.”
“She’s not doing well at all,” my sister said. “We can try to get you over there tonight, but she may not be totally with it. The hospice says she’s not doing good at all.”
“I don’t care,” I said. “I just need to see her, and tell her something.”
The day past, and by evening, my sister called, noting that Mom wasn’t doing well still, that in the next morning, she’d be moving into my sister’s for her final days, with home hospice care – the way my sister wanted it. But, inexplicably to all of us, my mother wanted to speak with me, too, and wanted to join us for a family meal, despite her inability to eat.
We made late reservations at my favorite restaurant, where I’m known, where I’ve frequented every week for quite some time, where I’m comfortable having the deepest conversations over dinner and drinks with friends, where birthdays have been celebrated, friendships strengthened, and good-byes to leaving colleagues have been said. If I was to speak with Mom, it was a comfortable place to do it.
But, as I drove to meet my sister and mom at the restaurant, I was more scared about what I was going to say than ever in my life. I’ve met with the President of the United States; I’ve done countless interviews; and, I’ve spoken in front of countless groups. But, this was different, rattling to my core. How do you look at your dying mother after so much tension and pain between you, and definitively express your ultimate gratitude and love? How can that ever be put into words?
Sitting at the table, bread and drinks served, I just followed my heart. “Mom, I wanted to talk to you not because you’re dying, but because you’re living,” I said, putting my arm around her. “Despite all that’s gone on, you were there for me at the toughest point in my life, when no one thought I would live, and you pulled me through – and I can’t express my love and gratitude enough for what you did for me.”
My mother saw my tears and stopped me there. And, in a moment I never expected, with a sobriety I hadn’t recalled in her since I was very young, she explained her side of it all – her regrets, her shortcomings, her absolute remorse toward the life she led and what she put us through. And, in the greatest act of kindness I’ve ever witnessed, she – too frail to walk by herself, eat, or talk above a slight whisper – made every effort with her words to apologize to me, my sister, and my daughter, one-by-one. A woman who long lived among the most selfish lives – which is what addicts do – used among the last moments of her life to offer among the most unselfish acts, all on her own accord, apologizing to her children, trying to make things right while she still could.
As tears flooded the table, our salads were served, and my mother asked, “Marko, do you need a spoon for that?”
And, for a split second I chuckled – after all, who eats salad with a spoon? But, then I realized that my mother literally went back to being my mother at that instant, where around the age of 5, when I was learning to feed myself, I could only manipulate a spoon, not a fork. And, although I’ve eaten with forks for decades now, my mother had taken us both back to a specific moment in time, before her world disappeared into a bottle of vodka, when she was just my mother, unconditionally.
“I’ve got this covered, Mom,” I said, picking up my fork.
At this writing, my mother is passing. For me, our life is like bookends: Yes, there was a lot of complexity in our lives in-between my birth and her death; but, on each end she gave my the greatest gifts of all – life at the beginning and healing at the end.