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When my husband was diagnosed with ALS, or Lou Gehrig’s disease, I knew he would die, but I thought we would have time to figure out what the next steps would be for me and our three sons. In Hallmark movies, there’s always a big reconciliation, a coming together when families face catastrophic illness. For us, it was nothing like that. Harvey, my husband for seventeen years, refused to follow the script. When he was well, he’d been an involved, loving father. Now sick, he wouldn’t write letters for the boys to open on their birthdays in the years to come. He didn’t put away treasures for them to discover long after his death. He didn’t think about us at all. Instead, with a fierce focus, his attention went to the book he’d worked on during our entire marriage. A professor of medieval art history, all he cared about was finishing his work on the private prayerbook of Louis IX, the French king who led two crusades to the Holy Land in the 13th century, the second one ending in his death.
Sad and angry as I was, I couldn’t blame Harvey. How else could he face losing control over himself, his life? Denial was the only thing saving him from pure terror. Two months after the diagnosis, his breathing was so labored he needed a tracheotomy so that he could be connected to a ventilator. He could still walk and use his hands and arms, but no longer breathe on his own. In the recovery room after the surgery was the only time I saw him unguarded, stripped of the wall of defenses he’d built.
It wasn't a warm, intimate setting, but I felt closer to Harvey that afternoon than I had in a long time. Even without being able to talk, he was more open, more nakedly present than he'd been since the diagnosis. And his eyes spoke volumes. He didn't want to die. He didn't want to leave me, to leave his sons. He wanted desperately to live.
Hospitals, like airports, have their own time zones and hours passed with me perched on a stool next to Harvey, holding his hand, stroking his arm, and looking into his eyes. I could feel the pull of panic deep inside him threatening to drown us both. Harvey was such a powerful person, with a strong sense of self and his own purpose, that I'd taken his strength for granted as something I could depend on. Now I had to be the strong one. It was a connection as intimate as marriage, demanding the same level of trust and caring. Because he needed me to be strong, I became strong. In a life where we'd shared so much and grown each in our own ways together, it was the last thing I could do for him, and the last gift he gave me. I could bear his illness, his growing dependency, even his eventual death, if at least he would take me along with him on the journey.
But he couldn’t. After coming home from the hospital, he shut me out again, colder than ever, devoted only to his book. Five months later he died, leaving me without any sense of how to pick up the pieces of our lives and go on without him. I didn’t even know how much money we had in savings or where our bank accounts were. I was left to figure it all out, how to guide our three sons into adulthood without him. And there was a fourth child, the book that Harvey hadn’t finished.
Much as I’d resented the book and the attention Harvey had poured into it during the months of illness, I couldn’t leave it for a graduate student to deal with at some vague future time. Somehow as a way to work through my grief, to get closer to the husband who had left me so abruptly, the book became my project. I needed to finish it, to get it published the way Harvey had always wanted. I went through his notes, stacks of files written in his cramped handwriting. I don’t know Latin or medieval French. I abhor footnotes and any writing that includes words like “hermenuetics.” There were photographs to order from museums all over the world, permissions to request in three different languages. The task was daunting for a children's book writer. But for Harvey, I took it on. I revised the chapters he’d roughed out and wrote new ones based on talks he’d given. Along the way I had the help and support of an international community of medieval scholars, people who knew and loved Harvey and were quick and generous to help. When I couldn’t understand a particular reference, I’d email one historian and if she didn’t know the answer, she’d forward my query to colleagues until someone, somewhere, would get back to me with the answer. It was a great collaborative effort, with professors from Harvard, UCLA, and the Courtauld Institute in London all helping.
It took four years, but the book finally came out and as I leafed through its pages, I was in awe of the finished object. It’s a gorgeous book, with a clean design and many rich color reproductions. I feel a deep pride that somehow I managed this, that I wrote the last chapter from notes, that I tracked down and ordered photos of medieval books and sculptures, that I drew the diagrams down to the reconstruction of the patterned silk that clothed the psalter, that I wrote footnote after footnote.
The book is a definite thing, a piece of Harvey we’ll always have. Reading his words is like entering a conversation with him again, hearing how he thinks, his passionate interest in art and history. Now it’s out there for the world to read, for our sons to discover, but really all my work was for an audience of one – Harvey.
