could not, however, have completed this project without the journals that I kept over the years. Funny, because I am not a born journaler. It’s just that, in caring for Paul, I had to write things down. And not because the act of writing was therapeutic for me, but because I was trying to make sense of it all, keeping track, understanding my role. In addition to my notes, I drew from Paul’s school and medical records and, of course, his journals.
The fact is, I throw nothing away. I don’t clear out my emails or voicemail messages as I should, and I shudder to even think about all that’s stowed in my attic. It occurs to me that there could be a correlation between hoarding and a good memory, with both representing a tendency to hang on, no matter what, when maybe what you need is to declutter—to sort out what’s worth keeping and dump the rest.
Writing this memoir was healing in ways that I didn’t anticipate at the outset, a time when—in spite of my overwhelming drive to take it on—I was uncertain of where it would go. More than a few friends have suggested it was my way of continuing the fight for Paul. Maybe it was. In the beginning, I was dedicated to the process—absorbed in gathering the information and pulling it together. As it unfolded, there were times when I felt as though it was leading me, instead of the other way around—a reality I couldn’t easily explain other than to say it took on a life of its own.
I came to see that recalling painful events catapults you back in time, forcing you to live them again and to suffer just as you did. But, then, getting these experiences down on paper—putting them out there—in many ways frees you from the burden of what you may have kept hidden from others, and even worked hard to do. And whether it was stoicism or secrecy that motivated stuffing it down, keeping it to yourself, it’s freeing to let it out. A weight, lifted.
In the end, seemingly disparate segments of the past converged to expose connections otherwise unknown to me. What I hope readers take away, more than a knowledge of the struggles or the heartaches we may have faced, is the discovery of a deeper truth, one that doesn’t dwell in the past but informs the future. In other words, the value lies not in what I brought to it, but in what it brought to me and hopefully to others.
This memoir draws on my personal knowledge and depicts actual events that took place in my life. All people are real, but some names and settings have been changed to protect privacy.
I should mention that I chose not to correct Paul’s spelling, a decision I wrestled with, and one that I may feel differently about tomorrow. After all, the best of writers have editors. But I decided that Paul’s idiosyncrasies were integral to knowing him. There were certain conventions or societal norms that he just didn’t get. A square peg in a round hole. An exception to the rule. Regardless of how his distinctiveness may have been characterized, I didn’t want to smooth over any of it.
Prologue
MY SON PAUL was different, and that is not just my opinion. Some described him as “unique,” but, regardless, the sentiment was the same and would be corroborated by every professional we encountered. His condition defied a label.
These differences not only presented learning challenges but also masked the ways in which Paul was gifted. Capable of higher-level reasoning than he was able to verbalize due to a language impairment, and equally trapped by a hand tremor that hindered adequate use of a pencil, Paul was underestimated both in and out of school. Not knowing anything different in his early school years, he toed the line, was liked by others, and was characterized as sensitive and kind. For the most part, he was shy and withdrawn, overly dependent on the teacher.
Placed in special education classes where often he was unchallenged, though sometimes lost, Paul increasingly suffered the frustrations of being misunderstood and, in many ways, his basic needs were unmet.
Marginalized and often mistreated, Paul harbored deep-seated feelings of inadequacy and over time developed a sense of hopelessness. The absence of affirmation and recognition, to say nothing of praise, dovetailed with failed systems—school, health care, legal—to create the perfect storm.
*
ANNAPOLIS, WHERE I grew up and raised my children, is a small city as state capitals go. Intertwined by narrow, colonial-era streets leading down to the harbor and the Chesapeake Bay, it was designed for horse-drawn carts, not today’s automobiles and bicyclists, who pretty much ride at their own risk. But Paul loved navigating these streets on his bike. As he raced across the bridge connecting the two parts of town—making deliveries for a local sandwich shop—he felt exhilarated by a sense of purpose and an independence he had rarely experienced.
Going into his apartment the day after he died shattered my state of disbelief, or shock, or whatever mindset I’d inadvertently adopted to protect myself. But seeing his bike propped up against the mantel in his bedroom, just as he’d left it after his last shift only two nights before, was as close to unbearable as any moment I’ve known.
I had been to his place so many times, once even without him during his recent hospitalization, and always found it comforting. For me, the apartment represented all the progress Paul had made; for him, it was a source of genuine pride, one he acknowledged with uncharacteristic candor.
With grief squarely upon me, I swung into caretaker mode, checking his mail, gathering some papers on his desk, and scanning the rooms for lights left on or a window left open.
Back home a few minutes later, I again slid into the shelter provided by a combination of denial, the distractions of people looking after me, and the pace of preparations for a memorial service. In moving Paul’s papers to a corner of the room for safekeeping, I noticed a receipt from the pawn shop. It was for his laptop. So that’s how he got the money. The money I had refused to give him I would now eagerly spend to buy back his computer.
Paul had turned to writing as a means of self-expression when he was young, filling countless pages with mostly illegible run-together words, often left crumpled in the trash. I had dozens of journals from his teenage years and remember his writing in them with a flashlight under his covers at night. Though his handwriting was nearly impossible to read—an effort further challenged by his spelling—I was able to decipher enough to be impressed, even surprised, and typed a few of his poems. Back then, I told him he should show his work to a teacher, but he had already decided there was no use. School was a place where he was underestimated, and the teachers thought he was slow and therefore didn’t ask much of him. After so many schools, and as many dashed hopes, he couldn’t afford to expect anything more.
And now here I was, all these years later, opening his laptop. My hands shook as I disabled the face recognition, typed in his password, and began to explore parts of his world not fully shared. Saved in files Paul titled “On Blog” and “Journals” are writings that span a decade, extending well beyond his teenage years. Everything I read, whether new to me or not, exemplified the vast discrepancy between Paul’s ability to think and his ability to articulate his thoughts.
This experience plunged me into a wild and merciless sea of emotions. I found myself starring down the barrel of a reality altogether too brutal for my capacity to take on. The finality of it all: The gifts Paul can never reveal; the inner life that most who knew him wouldn’t recognize and can never come to know; and the tragic forces that conspired to take his life, to take him from the world, and from me. I was also struck by the ways in which his writings tell his story.
*
AT FIRST, I just wanted to publish my son’s poetry. I wanted to honor him and show off his work—something he never did.
As I thought about it, I realized presenting Paul’s poetry apart from his life would be difficult for me—not to suggest I took the easy way out in writing this book. But knowing his life story as I do, I could see it provides a deeper understanding of his writings; I came to see the reverse is just as true—his writings illuminate a life otherwise obscured from others and even, in some cases, from me.
To intertwine the two, I open each chapter with several lines from one of his poems, which is then printed in its entirety—with its title and format as Paul created—in the back of the book. Also, I have interspersed a few of his writings in the body of the text