By Mark Stevens
Ann and I met in 1987 when we were Graduate students in the Yale school of Drama. Ann was in her first year of the 3-year program and I was in my second. Because of the intensity of the program it is not hard to imagine that our paths would cross almost immediately. I’m not sure what it was that attracted us to each other. Our common ground and sense of humor I’m sure was a major part of it, but we became fast friends. And even in the most stressful of times we could find laughter in the situation or in the myriad of problems we encountered along the way.
There was one time that we worked together on the same production of Shakespeare’s “The Tempest”. Ann was in charge of a particular set piece that can best be described as a windmill consisting of three steel pipes that extended below a raked show deck and attached to the floor Ann and I spent about two hours alone under the deck drilling holes and attaching the legs to the floor. Two hours that consisted of work, yelling, laughing and enjoying each other’s company. Two hours that helped developed a bond that would last for the two decades.
After I graduated in 1989, I moved to Los Angeles, California to work as the Technical Director at the University of Southern California (USC). Because of a change in positions after the first year, I moved up in the ranks and was able to hire a someone to work beside me to teach and design the technical aspects of the many productions. Ann was an accomplished academic, with and undergraduate degree in theatre and history, and after 3 years decided to return to school to pursue her PHD in the History of Science and was accepted in the program at Princeton University. Ann and I resigned our positions with USC and moved to New Jersey to begin the next act of our lives. Over the next few years and in no particular order we got married, taught at two different Universities and finally moved to Columbia, South Carolina and to work at the University of South Carolina. Over the next 11 years Ann worked as an Associate Professor in the History Dept and I worked for the Dean of the Honors College and then for the Dean of Arts and Sciences.
During those 11 years Ann’s scholarship, reputation, hard work and dedication led her to being offered her dream job as an Associate Professor in the Science and Technology Studies at Cornell. While Ann was a respected researcher and writer, teaching students was her passion. At Cornell, she finally had the chance to focus on both with a support by the University and her fellow professors that she never found anywhere else. I’d never seen her as happy professionally, and both faculty and students adored her, lining up to try to get into one of her classes.
When we lived in Columbia Ann had suffered from fibroids in her ovarian track, but surgery had taken care of them and regular scans had eased our minds that they would be caught quickly if they returned. Ann’s health was something we would watch, but we never obsessed. For the next few years before the offer to move to Ithaca Ann went for checkups twice a year and always got an “all clear”.
July 2016 was our second summer in Ithaca. I’m not sure what day it was now but Ann woke me one morning complaining about pain and asking me to take her to Emergency Room. If you knew Ann, and she said she was in pain, you knew this wasn’t something minor. So, we got up got dressed and headed across the lake to the hospital. We didn’t realize it then, but that morning began our longest journey together.
The trip to the emergency became a long day of scans and tests and the discovery that the fibroids were back, Ann was quickly scheduled for surgery at the center in Buffalo. After the surgery, the surgeon pulled me into a private area and told me he’d successfully removed the fibroids but couldn’t remove a large mass that was involving a larger area.
Ann and I had been married for 21 years and were best friends for even longer. We had experienced so many adventures together, both good and bad. But this was a situation that you can’t really relate to unless you go thru it.
The type of cancer Ann had was known as – endometrial stromal sarcoma — a rare form, affecting a small number of women worldwide. Ann had a lot of grit and was determined not to allow this disease to keep her from her commitment to her role at the university as a teacher and scholar. So, while she continued to fulfill her duties in the office and in the classroom, she began on a daily regimen of oral chemotherapy. Every day for the next 3 months, I drove her to campus so she could teach, and then pick her up and drove her back home an hour later. Most often she would retire to the bedroom with her laptop and do work until she fell asleep
The drugs took a terrible toll on her and after a month and a half it was obvious the drugs weren’t working, and a car trip to a world-renowned cancer hospital NYC yielded no new possibilities for treatment. A car trip that was extremely uncomfortable not to mention nauseating when we went thru the Lincoln tunnel.
Ann’s condition began to deteriorate at the beginning of December and when we went for a weekly appointment, Ann’s oncologist ordered a blood transfusion. This was the second type of transfusion she went thru we were not that unduly alarmed at this happening again, but then when you are in the situation and going through this type of thing what is normal? It was decided that she would be there overnight so since there was nothing I could do I went home to take care of the dogs and came back first thing the next day That morning as Ann and I sat talking in her room, one of her doctors arrived to talk to us. “There’s not much else we can do,” And that she was going to go home.
Ann and I looked at each other. And we had a long talk with the doctor. He was there for a long time making sure we both understood the whys and wherefores. Much of it wet in one ear and out the other. And suddenly we were alone in the room. I remember I stood up and was staring out the window for a long time and we said nothing. Then a memory came to me and I turned back to her as she laid in the bed is said. “you remember when we were under the deck putting in that stupid windmill or whatever it was”? And she nodded. “I thought of that the other day. Not sure why. But I remember how cool it was under the show deck. I remember how quiet it was in the theatre except for us laughing. Isn’t that funny? I remember it, like it was yesterday. And I after a while I turned back to her and said, “I wish it was yesterday”.
That was December 5. Six days later, Ann would be gone.
I had barely heard of Hospicare. You never think about something like hospice until you need it. Our doctor suggested Hospicare in Ithaca made some calls, and it was explained that Hospicare’s Residence was full. Another option would be to bring Ann home, but that worried us. Our 16-year-old son Evan was in the throes of exams at school, and we worried about the long-term effect it would have on him, as well as other members of our family who began to arrive. But we learned that we could have the full hospice services delivered right to Ann’s hospital bed.
At the time, I felt I was standing at the edge of a cliff, leaning over a dark abyss, lost and unsure of what to do. Then someone grabbed my belt and held me steady. I turned around to see who it was, and there was Hospicare. Every nurse, aide, and volunteer we met felt like an angel.
The whole experience is set up to help make a difficult transition a little easier. It’s not easy at all, of course. It’s terrible. Hospicare was established for that purpose. The purpose of helping with care of your loved one but also in helping the immediate family members like us with the process of transition. A help that was tirelessly and patiently explained in every detail and with all manners of help along the way.
Ann passed away on Dec 11, 2016 and it was devastating to Evan and myself. After Ann’s death, Evan and I found it difficult to talk to each other. In fact, there were times we didn’t talk at all. I had no way to understand what was happening in his soul, and he had no way to understand what was happening in mine. We didn’t yet know that it was okay to be sad. Or angry. Or hurt. Or furious. Or lost. Evan gave up playing sports, which was a passion he’d held since childhood. I spent every day feeling like I was walking around in a dense fog. Wanting to find the right words to say but not knowing how to form the words
We felt very alone. After a while, people didn’t know what to say when they saw us. Evan said it best: “People want you to feel better because they want to feel better. They don’t want to deal with it anymore, and just want you to be okay.” But we were not OK. We were stuck dealing with it all the time, 24 hours a day.
But a lifeline was there. We started meeting with Laura, one of Hospicare’s bereavement counselors. One of the very first things Laura said to us was that it’s okay to feel awful. Those emotions are the things that make us human.
From there, and in a beautifully subtle and compassionate way, Laura began giving us little tips to help us relate to one another. She brought positivity and light back into a world that felt so hopeless. Eventually, Evan and I saw that we could find a way out of the darkness and together we could find our paths toward healing. Similarly, I began to attend some of Hospicare’s group sessions. In those conversations, I listened to other people’s struggles. came to understand the depths of hurt. And it may seem strange, but those groups sessions help you to see and feel that you are not alone. You are not alone in a raft in the middle of a sea.
Every time I interacted with Hospicare it was like finding a little building block. Over time all those little building blocks construct a new normal. Both of us began to climb out of the darkness and see the sun. Evan returned to sports the next year. He became a captain of the high school swimming team and traveled to the state championships in his last two years of high school. And he was on the varsity Lacrosse team for 3 years. Because of everything he experienced thru Hospicare, and how it took care of his mom in those last days, he dedicated himself to working in healthcare and is now studying to become a nurse at Utica College
Does all of this mean I’m done grieving Ann? No. I think about her every day. There are still times when I would wonder and wish why she would walk in the room to share something with me. There are a thousand little things that remind me of her constantly. You never get over this kind of loss; you just make friends with the ghosts and be happy with the memories.
More people need to understand what Hospicare is doing in the community. It’s an incredible organization that provides a safety net for people like me. It’s part of what makes this area such a good place to call home. That’s why I tell my story here. Evan and I have volunteered for the past two years now during “Women Swimming for Hospicare”, and we feel good about giving back to the organization that gave so much to us.
Even though you may not have known it, the support you give to Hospicare meant you were supporting myself and Evan and the many families during the most difficult time of our lives. Thank you.
Ann was recently honored at the University of South Carolina.