When Bill and I stood before family and friends on October 11, 1997, we pledged to love each other in good times and in bad, in sickness and in health. For us the pledge was already relevant, Bill placed a wedding band on my cold, swollen, ring finger that day. Sickness was already a part of our reality and would become a constant companion in our marriage. My symptoms started around the time we got engaged; a few months after our wedding doctors diagnosed me with scleroderma and told me that I would soon grow very ill.
At a time when most newlyweds are planning their life together, Bill and I were gripping the idea that “Til death do us part” might be much sooner than we expected. During the first year of our marriage, Bill held onto hope for me until I was willing and able to hold onto it myself. When I tried to succumb to my depression in those early months, Bill prodded me, “You can’t just give up like this.” And he nudged and nudged like a loving but annoying puppy until I finally, literally, got off the sofa and started living again.
When I first expressed a desire to have a child, a family member advised, “You shouldn’t have children if you aren’t going to be alive to raise them.” Pursuing parenthood was the most hopeful thing that Bill and I could do in the face of my worsening illness, but it was also an act of defiance. Scleroderma was not going to rule our lives. And so, Amelia and Aidan, entered the world via my less than perfect but apparently adequate body. Soon after our third anniversary, we were a family of four.
Somehow, Bill and I managed the façade of a normal life despite my chemotherapy appointments and hand surgeries. Scleroderma had not ruined our life or our love, but it had colored it so deeply that it was a permanent part of the fabric of our union. Bill’s optimism allowed him to cope easily with the implications of my illness. Under the surface, my illness created an undercurrent of worry in me that sometimes made me feel like I was drowning. At those times I reached for Bill who always managed, somehow, to keep me from going under. The years passed by and, before long, we marked 10 years of truly living with scleroderma.
Then, with the speed of an impending front, my health declined. I found it increasingly difficult to meet the demands of a relatively sedentary job or to negotiate the stairs in our home. Bill and I attributed the shortness of breath to the winter blahs, we tinkered with my meds, we tried to carry on as usual. Despite our efforts, I soon stopped being able to run after our young children. Sores covered my hands, elbows and ears, lasting months. I coughed relentlessly every day until I was left breathless and perspiring with my head against the “Porcelain God.” By summer it was clear that scleroderma had finally decided to demand its due.
“Why are you doing the dishes?” he yells at me exasperatedly one night. I feel so angry with him. I watch him, when he thinks that I am not looking. I see the worry on his face and the weight of all his many responsibilities. Every night he leaves a demanding academic job at a relentlessly competitive medical school and he works second shift at home. He cleans the kitchen, does the wash, and readies the children for bed. After they are off, he works more on his papers and grants thus ensuring his presence every night for dinner. And he tries to manage my medical care, using his connections to access anyone who might relive some of my suffering. “Because I feel so sorry for you!” I yell back unable to see clearly past the tears welling in my eyes. “I wash the dishes because I can do that,” I stammer, “Because I love you and I feel so badly for you.”
Ours is not a marriage of romance and passion. Our lovemaking has more to do with folded clothes and unloaded dishwashers. I feel his love in the way he lays out my meds and holds my hair as I puke, yet again, into the toilet. It isn’t pretty and it is not for the faint of heart. I have had to learn to be intensely vulnerable and trust him completely. And he has respected my vulnerability with compassion. The infatuated sexual encounters of our courtship having nothing on the intimacy we share by accepting and enduring as a united front everything my illness has wrought. I realize now why old couples still hold hands, they have only just begun to discover the depths of their love. Bill and I are merely four decades ahead of schedule.
One day I unexpectedly stumbled across a file that contained every card and letter that I had given Bill during our courtship and marriage. I sat on the floor of our office and revisited dusty memories. I ran my fingers across the front of one card, me eyes welling with tears, “Someday, when we have been together for a very long time, we’ll turn out the lights and slow dance on the porch in our bathrobes … And each night, we’ll roll to the middle of our old bed into one another’s arms. Where we’ll kiss, and touch, and dream the secret dreams that only old lovers know.” Apparently, I purchased it after being short with him for being inept in the kitchen. Inside the card I apologized for being inpatient and reassured him that I picture us old together, chubbier from a lifetime of pasta dinners. I bought the card before I knew I was sick, back when I thought we would grow old together. And I sat in the middle of the floor and cried, because it will never be and because I have never mourned losing Bill and me.
Someday he will grow gray with the love that replaces me. Surprisingly, this reality makes my fate tolerable. I find comfort in the idea of him finding love again and healing in someone’s loving embrace. I hope that in watching their father move on, the children will also learn to love the mother who takes my place. But I wish that Bill and I could be a little old couple walking along hand in hand, a testament that love endures time, illness, and nitpicking. I wish that “’Til death do us part” was still off in the distant future.
One night I tell him the truth. “I think that at some point the cost of me being here is going to higher than the cost of me staying, “ I reason ever the economist. “I want the kids to have a mother who can do things with them, who can take them hiking and skiing. And I want you to have a better life than this with someone who can do more.” “But I want you,” he responds without even the slightest pause. Everything about this scenario is improbable – developing a rare life threatening disease so young, successfully having a family and a career despite the illness, and succumbing to the illness at a point when I should have been in the free and clear. But, to me, nothing is more improbable than Bill’s continued desire to remain by my side through it all.
Sometimes I realize that, unlike me, Bill chose this life. He knew that I was sick before we married, but loved me enough to stay. One night in the emergency room I asked him, “Why did you stay?” He cracked a joke in response. The next day while I lay on my bed he knelt by my side. “I honestly never considered leaving. I love you” And he says it with all the right emphasis on the word “love” that tells me how much he means it. He makes it sound like loving me is like breathing, an involuntary and necessary part of his existence. In this moment I realize how much he loves me and how very lucky I am that on a beautiful October day at the end of a church aisle he uttered those seemingly trite vows and meant every word.