Guest Editor: Steve Berman
What Did I Know?
Joseph R.G. DeMarco
What did I know about love? What does anyone really know? As a young man, I was filled with all the romantic notions that everyone else is fed. But my long ago self also had the idea that love would be a shield against and a haven from my fears. That it would be a safe place to live.
I slipped into a relationship, settled down, and thought that was that, one large piece of the puzzle. And, for a long time it seemed to be. The relationship was, like every other, filled with ups and downs, stormy times and smooth sailing. It wasn’t all as romantic as I’d thought it would but that romantic haze never lasts anyway. Overall, we were a couple with all that entailed.
While preparing to celebrate another year together, things took a turn neither of us could imagine. For some time, Bill had been having various physical problems. They were incidents that could be chalked up to harmless causes. But Bill had a feeling that something more was wrong with him. That began a round of doctor visits and tests.
When, after some frightening and painful tests, a doctor told us that Bill had ALS, every trite expression ever invented for situations like that came to mind when later talking or writing about that moment. Numbing. Surreal. A bad dream. Wrenching. Name it, I felt it.
Bill was devastated. He was aware of the horrors that Lou Gehrig’s disease could wreak and when he heard the doctor give his diagnosis, it took a moment for Bill to take it all in. The doctor left the room to give us a moment to absorb the news. It was just the two of us and a lot of fear, pain, and misery sitting there. Bill opened his mouth to cry and no sound came out but the sobs wracked his body. He was desolate and fearful of what the diagnosis meant for him. I comforted him as best I could, which is to say, not much at all. There is little comfort to be had at moments like that.
It was a numbingly surreal bad dream which wrenched my heart out and in one blinding instant changed everything. The love and pain we’d shared, the happiness, and all the good and bad times any relationship pushes through, all came down to three letters which meant the end of the world as we knew it.
In addition, for me it was also the moment that a shadowy fear, which had stalked me for years, stepped to the front and forced me to confront it.
I’d had an aunt, my favorite aunt, who’d contracted ALS, the same illness as Bill, but many years before. She lived four hellish years before she succumbed.
It was so horrifying a time that the fear of the disease followed me for years afterward. Watching her suffer was more frightening than anything I’d ever faced. And I didn’t face it as well as I could have. I wasn’t there as much as I later felt I should have been. For a while, I watched my aunt battle the illness, refusing to submit to the insidious things it does to a body. But eventually she was unable to cope and had to accept the indignities and the hopelessness it brought. I saw that and it shook me to my core. As the horror deepened, my visits grew fewer. There was nothing anyone could do about the disease she had but I could at least have been present more often. I wasn’t and I live with that failure every day.
After her death, the shadow of her disease haunted me. I was obsessed by the fear and struggled to keep it at bay. I never spoke to anyone about the ever-present dread, instead I held it all deep within and tried to deal with it in my own way. Which, really, was no way at all but to run as fast and as far as I could from anything to do with it.
Somehow I managed to move through the years, going to college, finding jobs, and understanding myself enough to come out. But every day and every night, in those moments when my mind wasn’t distracted by other things, the past was with me, taunting me, shuddering through my day dreams and my nightmares. What I’d witnessed stuck with me and created a set of powerful anxieties in me. The fear of death, the terror of being abandoned, the dread of being forgotten.
Somehow, I imagined that love might be the answer. Sweet, gauzy, romantic love where happily ever after was the rule. Where no one is unfaithful, no one is forgotten, no one leaves anyone, and everyone floats along on rivers of pink frothy emotion.
Now, I shake my head over the idea of Joseph, the romantic but frightened kid grasping at anything to help ease his fears and keep him from drowning in them.
I often wonder how my younger self got through each day burdened with such fear. How he managed to work his way through college, complete a rigorous Jesuit education which had him majoring in three things at the same time, and have just a sliver of a social life outside all that. All the while battling nightmares and demons to keep them from consuming him whole.
That younger Joseph was innocent in some ways, too knowledgeable in others. He was filled with fears but not with self-confidence. He had tons of hopes and dreams but not much support for them. Somehow, he got himself to the point where he came out of the closet and began to think he might be able to realize some of his dreams.
He became an activist and joined gay liberation groups. He integrated himself into the community. But when he looked around, he felt incomplete. Everyone, so it seemed, had a lover. The idea of ‘love’ took center stage for him. He didn’t really know much about that kind of love or why he even wanted it. Except that it might be a haven. He didn’t exactly think through the whole ‘love’ thing, it was just the fantasy of romantic love and of being coupled and safe.
He closely observed the domestic life of the couples he knew. Who seemed to be the spokesperson, who was the real force in the relationship. Who cooked, who set the table, who organized the house, how they managed all the ‘things’ they collected. He watched as they held hands even at home, how they floated in an easy choreographed way around one another while getting things done, how they seemed to present a solid front when dealing with others.
Joseph fell in love with all that domesticity, fell in love with love, and wanted the same things.
So, Joseph went in search of love as if it were something he could find and tag and own. The young, still-innocent kid launched himself into the world of finding a lover. He had notions about what love should be and what it meant for him. What he didn’t realize was that his fears helped shape his ideas about love, which wasn’t what love was really all about.
At some point he set his sights on another member of the Gay Activists Alliance, which now sounds more like something out of science fiction than reality. But it was a real enough organization and it was huge and there was this guy who caught his eye. Tall, blond, stable. Secure, self-confident, and very, very social. Everything Joseph wasn’t. At least that’s how Joseph saw himself and saw in Bill what he felt he lacked in himself.
He made his move and they settled into beginning something. I don’t think either of them knew exactly what they wanted or what they were doing and they certainly had few examples that lasted a long time. But they both saw something in the other and decided it was worth a try.
All through those years of building a life together, Joseph never for a moment let down his guard when it came to his fears. The horrors still came as nightmares to disturb his sleep and as horrifying thoughts to disturb his days. Many things reminded him of that terrible dread he had and never allowed him to forget it. The happiness in life was tempered by the terrors of the past. Joseph felt that no matter what, no matter that he’d built a life that included love, he still had to outrun those fears or they would catch up and overwhelm him. Everyday was a battle.
Then, it all began to happen again. The doctors, the illness, the pain and confusion, the hopelessness and despair. It was as if I’d left the real world for some horror movie version of life. I was confused, frightened, and heartbroken.
One thing, though, had changed. This time, I resolved that I would not run away. That I would be there, be present for this person I loved.
The disease is relentless. It was a time of loss and more loss. ALS takes everything away from a person little by little. All you can do is try to keep up and make life as manageable as possible. Sometimes the changes came too fast. Just when we’d adjusted to one set of losses, everything would deteriorate again. Which meant more equipment, more learning how to cope with new problems, more hollowing out of the place where your heart used to be.
For every day of the thirteen months of his illness, I stayed by his side, cared for him, prayed, cried, raged against everything and anything. I abandoned just about everything else in my life at the time: projects I was working on, my job, any sense of a life outside the walls of our house.
When he died, I was bereft and was left to wonder about love and why I had sought it out all those years before. I wondered why I had romanticized the idea back then only to find that it ended in pain. I thought love was the thing that shielded you against the world and harm. Kept you from being abandoned and forgotten.
After two years working with a grief therapist, I realized that I’d learned some things after all. After more than twenty-five years in a relationship, I learned that love is more than I expected and not at all what I’d fantasized. It had little to do with the romantic notions that my younger self conjured up.
Because of these realizations, I had this notion that I’d like to go back to my younger self and tell him a few things. Why? I’m not sure. All I know is that the lessons I learned might serve him well or give him hope even if it wouldn’t change anything.
That younger self would still do what he’d done, would still get involved in a relationship, would still find the stark horror that he was presented with and had to endure.
Somehow I’d find a moment, just the right moment, to appear and tell him a few things. Things like: wait twenty five years or so, Joseph, and let that time wash over you. Let your soul grow together with Bill’s and see how much a part of each other you become. Let those years bring joy and sadness, let them connect the two of you through the deaths of parents and relatives, the deaths of friends, through arguments and love talk, through the highs and lows of daily life. Let the years bring you anniversaries and birthdays, vacations and quiet times at home. Let those years watch as you nurse each other through one minor illness after another.
Let the years knit you together and make you a tightly woven cloth that warms you both when you have chilly arguments or refuse to speak to one another for silly reasons. Let those years show you the cruel days as you watch the one you love sicken and die, slowly and horribly, knowing there is nothing you can do to prevent it. Then let those years force you to see your love die in your arms, feel his spirit fly up and out of reach, sense his soul hovering around you but not warmly next to you in the same way it had been for more than a quarter of a century.
It won’t be easy but let the years show you those things, Joseph and in doing so let them reveal to you what love is really all about. All those experiences will tell you that love never really dies, is never forgotten, never grows cold, and is never put away. The years will tell you that if you have learned to love well, you will want to love again. And the person who is gone but not really gone, will want you to love again because he knows love in all its splendor even more fully after death. And he wouldn’t want you to miss out on it, if you are lucky enough to find it in another person. He would not want you to put away your life to mourn, just to demonstrate that you loved him. Doing that would prove nothing. Loving again, though, might prove you had learned what love really means.
Telling Joseph all that wouldn’t spare him the pain that relationship would bring, but I could at least let him know that it wasn’t all for nothing. That love is worth something. That in embracing that tiny word, we touch something bigger than ourselves.
Joseph R.G. DeMarco is a native Philadelphian. He is most well known for the Marco Fontana series of gay detective novels set in the City of Brotherly Love, but he has been involved with the local LBGT community for decades.
His website is http://www.josephdemarco.com/.