If You Can Dream It, It Will Happen, The Loomis Chaffee Magazine,
Henry Kravis '63 challenged us to record our dreams on commencement morning in 1993. "You all have dreams...don't be afraid of reaching for them, because if you don't reach for them, you can be sure that you'll never attain them. Following dreams is not 'kid's stuff.' It's a lifetime's work. Your dreams may change as you do, but never allow yourself to be too afraid, too rigid, too settled or too old to dream and to reach for those dreams."
I envisioned myself at the age of 25 as a college graduate, a married woman, perhaps already a mother and a person who was doing what she loved to do. I wasn't sure what my passion would be, but I was confident that I would have one, and that it would be pushing me forward. And, I was positive that what I had learned at Loomis Chaffee would help me to achieve my dreams.
Julia Vacek '93, my first friend at LC whom I had met during Project Outreach, used to humor me when I wrote my future married name during chemistry class - Mrs. Curtis Vance. Heidi Erdmann Vance. Mrs. Heidi Vance. I had fallen in love with a 17-year-old boy from Vermont the summer of 1990, and I just knew that I would marry him. Julia would tell me, "If you can dream it, it will happen." Tony DiGregorio and Gloria Hutchins, my work job supervisors, taught me how to work perfectly and with precision, but also how to enjoy life and how to laugh. Erik Mueller '93, a great friend and member of the cross country and track teams, persuaded me to train with him during the winter of 1991 even though I was not a runner, instilling in me the fact that if you work hard enough, you'll succeed. Heather Herson '93, my best friend, pushed me to try harder and strive higher, but she always reminded me to keep reality in mind. After giving my first all-school speech as Student Council president, I discovered a note in my mailbox from Jen Hefner '93, which read in part, "I am so proud of you." Later, she consoled me when I was deferred from Middlebury College and encouraged me to put my ego aside and pursue regular-admit decision. "Bruno," a.k.a. Chuck Vernon, pushed me to excel and helped me to accept praise and admiration. Headmaster John Ratte, my senior year adviser, illustrated the importance of dedication and commitment, but he insisted that I laugh at myself once in a while! Each of these Loomis Chaffee people taught me how to dream.
However, five years after graduation, my dreams were shattered. Curtis, my friend of eight years and boyfriend of three, was diagnosed with ALS, amyotrophic lateral sclerosis, commonly known as Lou Gehrig's disease, in December of 1998 at the age of 25, and was given less than a year to live. There is no known cause and no known cure for ALS. As the victim's motor neurons die, the person is paralyzed, body part by body part. The brain is spared, though, as are the senses. In August of 1998, Curtis felt his right leg getting progressively weaker. One day he could step up a step; the next week he couldn't. His mind took this information and decided, "I can live this way." The next month, he could see and feel "twitches" in his right biceps, which we later learned were called fasciculations, a telltale sign that those muscles were atrophying. So, Curtis' mind knew his right arm would retain its strength for only a period of time. How long? No telling. A month later, that arm couldn't pick up a gallon of milk. I quit my job as Middlebury College's assistant tennis coach to care for Curtis. Why? Because I loved him.
To say that we both had ALS is an understatement. ALS became us. It invaded our home, our daily lives, our future, our families. Curtis couldn't bathe every day because our home health aide came only three days a week. She held him while I bathed him on our bed in his inflatable tub. I could shower only if someone watched Curtis. He still insisted his teeth be brushed and flossed twice a day, even though it took us 30 minutes. I often didn't brush my own teeth, for I would forget that it was already night, or already morning, or already the next day. I didn't floss for a year. If I needed to leave his side, my neighbor, or one of my sisters, Heather Erdmann Sullivan '90 or Tricia Erdmann '99, both of whom lived with us whenever they could, would watch him for me. Curtis' insurance did not cover respite care, but more importantly, Curtis and I depended on one another to stay alive.
As much as we cursed ALS, we accepted it. Actually, we grew fond of its teachings. Curtis realized that ALS gave him time. Funny, isn't 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." Curtis and I lived at least half a century in his final year. We started healing circles, thinking that others' positive thoughts could help Curtis heal himself. Miraculously, we gave more than we got. We gained strength through helping others. People left our home feeling full, blessed, as though they had been given a second chance. 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 didn't ask, but needed it just the same. We gave people love - and hope - by example.
As time moved forward, we began to pray for more good days than bad, for more quality time, rather than just time. We reminded one another of how lucky we were, for there are many people who never tell those whom they love how much they love them, because they never imagine it could be the last time they see one another alive.
In October, 1999, Curtis and I decided he would have a feeding tube, but not a permanent ventilator. Barring complications, an ALS patient can live indefinitely with mechanical aid. Before surgery for insertion of the feeding tube, Curtis stated that he had changed his mind about marriage. In 1998, we had discussed getting married, but after the diagnosis he had argued, "I don't want to marry you and then die." Lying on the hospital bed, knowing that he wouldn't be able to breathe without permanent ventilation for much longer, he bargained, "If I make it through this, we'll be married." On November 27, 1999, we appeared before our families, our friends, and God and asked 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 provide us, 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 its progression, he wouldn't 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 said.
I'm still haunted by his face as he begs me to get the stuff out of his nose and throat. There was no relief. I knew that Curtis was afraid to die, but he was more afraid of leaving me, alone. In his final hours, I asked him to close his eyes. "No," he whispered. "What if you aren't here when I open them?"
Then he apologized to me. "For what? For giving me the best year of my life?" I accused. "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. 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 okay, right?" And then I held him and kissed him and talked to him for hours until my hand, which was placed upon his heart, felt the last beat.
Our experience with ALS taught us how to live and prepared us for death. But it was only Curtis who was allowed to go. Since his death on December 19, 1999, I have suffered more than I did during his illness. While he was alive, I could anything. After he left, I was lost. One night, though, I heard from Curtis, whose intense words still appear often and 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. My sister and I were lost in the woods. Fearful of becoming more lost, I considered stopping, but a voice urged me 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. "I'm home," I declared to my sister. She was no longer with me, but I wasn't alone. Curtis came from above. In other dreams, he had come to me in human form, but this night he was a spirit. Slowly, he approached. I stood still, waiting. His energy surrounded me. 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.
A year after Curtis' death, I allowed my dreams to change. Having learned that love is all that you can take with you when you leave this world, I yearned to share our experience in order to help others. Today, I run my own ALS foundation, and I am writing a book, with the hope that some day the world can benefit from our story. As I work toward my goals, the words of so many Loomis Chaffee people repeat themselves in my mind and heart: "Enjoy life. Laugh. I am so proud of you. Laugh at yourself once in awhile." In particular I think of Julia's refrain, "If you can dream it, it will happen." She recently co-hosted a fundraiser for my foundation in San Francisco, which many LC friends attended. Jen volunteers as a member of my board of directors, and she hosted a fundraiser in Chicago. The support that I receive from the LC community helps me to maintain the strength that I need to live in this world without my Curtis, just as their encouragement aided me in my development throughout my high school years.
I have found a new passion. Hopefully, it will change over the years, for I pray that I will aid in a cure for ALS and that I will finish my book. And then I will remember, again, Mr. Kravis' words: "Perhaps you'll better understand that following dreams is not 'kid's stuff.' It's a lifetime's work. Your dreams may change as you do, but never allow yourself to be too afraid, too rigid, too settled, or too old to dream and to reach for those dreams."
The Curtis R. Vance Foundation, Inc., is a nonprofit foundation whose mission is to provide public education and funding of research for a cure for ALS and assistance to the victims of the disease and their families. Heidi Erdmann Vance '93 serves as president; Patricia Erdmann '99 serves as secretary; and Jennifer Hefner '93 and Heidi's father, Lee C. Erdmann, are two members of the board. For more information, please see the foundation's website, www.als-curtisvancefoundation.org
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