Till Death Us Do Part, The Middlebury Magazine, Fall 2001.
Before my husband, Curtis, succumbed to ALS (commonly known as Lou Gehrig's disease), life without him was unimaginable, and now that he is gone, the year that we lived with ALS is unforgettable. Tonight, over two years since his diagnosis, and a little over one year since his death, I lie down in my bed and wonder why I cannot hear his external respiratory aid breathing for him, thus keeping our hope alive. Alone, I reach for his body, remembering how he could not reach for me those final six months. In a whisper, I ask him if he would now pray for me. For us. His voice had gotten so quiet during his final months here with me that I had to speak both of our prayers. In his last weeks, I had become his interpreter, and eventually his voice. This night, too, he still does not answer in an audible tone, but I feel his answers in my heart. His intense words appear so often, and they come from so deep inside of me, that I sometimes wonder if he simply moved out of his broken body and made a home inside of mine.
To say that we both had ALS is an understatement. ALS became us. It invaded our home, our daily lives, our future, our families, but as much as we cursed it, we accepted it. Actually, we grew fond of its teachings. Curtis learned to notice the little things, and that little things mattered. I recall the day he sat for hours in his blue recliner that I had dragged outside onto our newly poured square of concrete, which we called our patio. It allowed him to feel stable while he watched his garden grow. This particular day, he was waiting for a hummingbird. He marveled at how it could move its wings at incredible speed, and yet stay in one place. Curtis commented that this bird reminded him of how he spent much of his time, before ALS. Running. And yet not really going anywhere. Yes, he had accomplished things of which he was proud, but what did these things really mean, he wondered? He had enjoyed his childhood, made it through high school with no major traumas, received a degree from a technical college, worked various jobs practically his whole life, and right before ALS, he held two great jobs, had plenty of money, lived with me, his girlfriend at the time, and ran himself ragged trying to please me, his family, his bosses, his coworkers, and his friends. ALS gave him time. Funny, isnít it? A 25-year-old man, diagnosed with a terminal illness, with a projected life expectancy of less than a year, thinks he was given time? Time to live, he had said. Time to notice the little things. Time to discover who I am, and what I want to be. Time to wonder what this life is all about, and why it is I am here. Yes, we had a wonderful time, learning these things together. But, along with pleasure came the pain. We learned how to live, while we prepared to die.
ALS is a horrific disease. Not just because of what it does to the body, but because of what it doesnít do to the mind. As the victimís motor neurons die, the person is paralyzed, body part by body part. The brain is spared, though, as are the senses, bowel, bladder, and sexual function. In the beginning, in August of 1998, Curtis felt his right leg getting progressively weaker as the days advanced. One day he could step up a step, the next week he could not. His mind took this information, processed it, and decided, I can live this way. The next month, his right arm felt strange, he could see and feel "twitches" in his muscles, which we later learned were called fasciculations, a telltale sign that those muscles were in the process of atrophying. So, Curtisís mind knew his right arm would retain its strength for only a period of time. How long? No telling. A month later, that arm could not pick up a gallon of milk. Stiff-legged, he felt awkward as he shuffled from place to place, feeling strangers wonder what could be wrong with that young man? By December of 1998, he was unable to drive his new car because he did not have enough strength in his legs to push down the clutch. That same month, he was diagnosed, given less than a year to live, and told that his disease was familial.
His maternal great-great-great-great-grandfather, Samuel Farr, born in 1804, died in 1865 of a horrible disease that slowly debilitated his body. Doctors named it Farrís disease, and it was known by that name until it was termed familial ALS. Farrís disease has affected approximately 50 percent of every generation of Curtisí ancestors and family since Samuel Farr, his brother, who died at age 40 of ALS, and his sister, who died at age 54 of the same disease. Out of Samuel Farr's eight children, four of them died of ALS. His daughter was only 27. His three sons, one of whom was Curtisís great-great-great-grandfather, all died in their forties of the disease. Only 10 percent of all ALS cases are familial. Ninety percent of the more than 5,000 cases diagnosed each year are sporadic, and thus anyone can "get" ALS, of which there is no known cause, and no known cure. At any given time, there are 30,000 Americans living with ALS. Of the ten percent of ALS cases that are genetic, twenty percent have been identified. In the case of Curtis's familyís, there is an A4V mutation on the SOD-1 gene. Although doctors have identified the mutation, they do not know what triggers it. And not all persons with mutations in SOD- 1 develop ALS.
There are older people with the defective gene who have no symptoms, although generally by age 85, about 85 percent of persons with the mutation will have developed ALS. Curtisís mutation triggered when he was a quarter of a century old. His grandmotherís mutation triggered in 1962; she was 40. A hoarse voice was her first symptom. Eight months later, having lost the ability to speak and swallow, as well as the use of her hands and arms, she was dead. Her mother, Curtisís great-grandmother, who had researched the disease and had recorded and written pages of information, threw the facts into the fire. Thus, the history of the disease became a secret to the succeeding generations. Curtisís great-aunt also died of ALS in 1966, and his motherís cousin died of ALS in the mid-nineties, but Curtis still had never heard of ALS. After his diagnosis, he wanted everyone to know about ALS.
In February 1999, I realized that Curtis and I would need help, that we could no longer live alone in New Haven, Vermont. I left my job as Middlebury Collegeís assistant tennis coach to care for Curtis full time, and we moved to Curtisís hometown of Danville, Vermont. Why? Because I loved him. Time passed. It always does. On his good days, we would beg time to stop. Those days were spent playing with our new puppy, Woo Woo, talking with family and neighbors, going for walks, making love, watching one another. The little things. The little things that matter.
On his bad days, he would beg me to find a cure, bargain with God for more time, wonder how much one could handle before it was too much. The pain came in many forms. Sometimes it brewed for days and then crept up behind us and slammed us on our backs; other days it popped up in front of us, and slapped us in the face. Curtis mourned the loss of his body every day he lost a particular ability. One day he could use his right hand, even if just a little bit; the next day it could do nothing. One night he could walk; the next morning he could not. Yes, there were cramps, stiff and sore body parts, backaches, and headaches to deal with and work through, but those were easy compared to the heartaches. It was painful for me to watch Curtis limply hold his razor in his left hand and try with his whole being to make that hand do what he wanted it to do. Holding him on his tub bench in the shower, lifting his arms to wash under them, spreading his legs to wash between them, taking off his mask, which supplied him with the air he needed, in order to cleanse his face, was not hard for me. It was watching his expression turn from thankfulness and admiration to pity, for me, and helplessness that was painful.
Every night, though, after I got Curtis into bed, undressed him, gave him his last group of vitamins and medicine, changed his day mask to his night mask, and kissed him the way a wife kisses a husband, he would say, "Another good day." "Another good day to be thankful for," he would repeat. In the beginning, we prayed that the diagnosis had been wrong. Then we prayed for a cure, a miracle, a new alternative treatment that would not only stop the progression of the disease, but reverse the symptoms. Later, we prayed for more good days than bad, for more quality time, rather than just time.
Curtis and I lived at least half a century in his final year. We started healing circles in our home, with the thought that othersí positive thoughts and love could help Curtis heal himself. Miraculously, we gave more than we got. People left our home feeling full, blessed, as though they had been given a second chance. At what? At life? At grieving? At the opportunity to use the time they have? Curtis and I knew we were giving, but we werenít sure how we could be when we ourselves were exhausted, and why were we, when we knew we had so little left for ourselves? Love. There was so much love between us, in us, through us, around us, that it flew off into every direction, onto anyone who asked for it, or didnít ask, but needed it just the same. We gave people love, and hope.
In October of 1999, our hope of a long life together here on earth was challenged when Curtis and I decided to have a feeding tube, but not a permanent ventilator. In the car, on the way to the hospital for the surgical procedure, we found ourselves stuck in Bostonís traffic. Curtis spoke for the first time that trip, "I wish we were going to the Red Sox game like all of these other people. Donít you?" A few hours before surgery, he stated that he had changed his mind about marriage. The summer before he got sick, we had discussed getting engaged, with plans to marry that following year. But, when the spring came, he had argued, "I do not want to marry you and then die on you." Lying on the hospital bed, preparing for the insertion of a feeding tube, with the knowledge that he would not be able to breathe without permanent ventilation for much longer, he bargained, if I make it through this, weíll be married. I was with him for all but 25 minutes of the procedure, during which they almost lost him. On November 27, 1999, we were married, in order to appear before our families, our friends, and most important, before God and ask that we be united in mind, body, and spirit for all eternity. Near the end, we prayed for peace, and a comfort that only God could supply, for we faced final days that were full of unimaginable pain and fear. I knew he was preparing to leave when he stated that if the disease were to stop right now he would not be happy; he could only move his eyes, nod his head from side to side, manage a hint of a smile, and slur his quiet speech. This is not living, he had said. I am still haunted by his face as he begged me to get the stuff out of nose and throat. "Clear it out!" he would slur. Get the suction machine. Get the inexsufflator. I would treat him with the aid of these machines again and again, but there was no relief.
I knew that Curtis was afraid of death, but he was more afraid of leaving me alone. In his final hours, I instructed him to close his eyes. He could not, he slowly whispered, for he was afraid he would awake and I would not be there. Then he apologized to me. For what? For giving me the best year of my life? For showing me how to live, how to notice the little things? For allotting me the time to discover who I am, and what I want to be; for giving me the opportunity to wonder what this life is all about, and why it is I am here? For loving me? "Curtis," I said, "we had a wonderful time, learning these things together. Close your eyes," I demanded. "Imagine a place where there will be no more pain, no more suffocation. See yourself walking, running, fishing, doing all the things that you have missed. Close your eyes, for when you open them, you will either be in my arms, or in the arms of God, and either way it will be OK, right?" And then I held him, and kissed him, and talked to him until my hand, which was placed upon his heart, felt the last beat.
I have suffered more since Curtisís death than I did during his illness. While he was alive, I could do anything. After he left, I was lost. I had dedicated my whole being to saving the man I loved, but once he was gone, I did not want to live. A month after his death, I stared at a face in the bathroom mirror and did not know the person looking back. Gaunt, pale, shallow. Old. Who am I? I asked the reflection. Curtisís widow? The last time I had checked, I was a recent college graduate who was still trying to find my place in this world. The reflection in the mirror hinted that Curtis had been wrong to be so hard on himself when he had stated that he had spent 25 years running, and yet had gotten nowhere. I, also, had run for 23 years. No, actually, I had raced.
After serving as President of the Student Council, editor of the yearbook, captain of one varsity sport, member of another in high school, I had entered Middlebury College as a Feb in the winter of 1994, determined to slow down, enjoy, and relax. That lasted one semester. I graduated from Midd in the spring of 1997 with honors in a major that I had started in the fall of my junior year, a minor in another field, and had served as captain of two varsity sports. Upon graduation, I scrambled to find the perfect job, and wound up right back in Middís development office. After a few weeks in the office, I accepted an offer to help out with the tennis teams. Nine months later I left Middlebury to become an assistant tennis pro at the Basin Harbor Club. The following fall I returned to Middlebury to coach the menís tennis team, and spent most of my free time writing resumes and interviewing, again, for the perfect job.
I am no different than my fellow graduates of Middlebury, whether from the class of 1997, 1977, 1957, or 1927. We have all chosen our path, and we have all been fortunate to have the memory of our college years to reflect upon when we have been faced with difficult situations and have thus needed a reminder that we can, indeed, make it through. In particular, our class of 1997 endured the pain of losing a number of our friends throughout our four years. Colin OíNeill, who left us in the winter of our junior year, was a very good friend of mine. I had entered Middlebury with him, along with Ryan Waldron, who was taken from us right before graduation. Every moment we are faced with the option of running, walking, or standing still. All three choices are good.
Curtis and I never said good-bye, only see ya later. One night, after he died, I did see him. My sister and I were lost in the woods, searching for a clearing. Fearful of going forward and becoming more lost, I considered stopping, but an overwhelming sense came over me that I had to keep moving in the same direction. A few moments later, my sister insisted that we turn around, but a voice pleaded with me to keep moving forward. My saunter became a brisk walk, and when a field came into view, I began to run. I discovered a clearing surrounded by trees in all four directions. "Iím home," I declared. My sister was no longer behind me, but I was not alone. Curtis came from above. In other dreams, he had come to me in a human form, but this night he was a spirit. Words can not describe the magnificence of his being, which was marvelous to witness. Slowly, he approached. I stood still, waiting. His energy surrounded my whole being. I felt as though his arms were holding me. As one, we left the earth, and I felt the sensation of us dancing. It was our first dance as husband and wife.
Heidi has started a nonprofit organization, the Curtis R. Vance Foundation, Inc., to provide education and funding of research for a cure for ALS and assistance to the victims of the disease and their families. She is also writing a book about her life with Curtis.