Dream New Dreams

In 2008 my husband died after a two-year battle with pancreatic cancer. While he received the best medical care possible, from the time he was diagnosed in 2006 until his death, I was his primary caregiver. In spring 2009, I participated in an event sponsored by my local Jewish Community Center (JCC) called the Week of the Caregiver. It was my first time speaking about my experience. In putting together my talk, I had to force myself to examine the struggles I had faced over the previous couple of years. First, I had to convince myself that my voice and perspective were valuable. Then I had to pull together my hard-won lessons, striving to take the ugly, nasty things I had been through and do some good with them; to spin some straw into gold so to speak, and to share them with others who were walking or might walk the same path. I was reassured to see that what I had to say struck a chord. The hundred people in the audience not only listened attentively, but some also took notes.

After the talk, I shook hands and listened as people shared their own experiences. Their grief and the guilt they felt for mistakes they perceived they had made echoed some of my own feelings. I asked myself, Where is the help for folks like us who tirelessly
give to our dying loved one? Why wasn’t the medical community concerned about the people who struggle to carry the medical burden while also meeting normal everyday demands? I wanted to hug them all and wipe away their self-doubts and replace it with self-forgiveness. I wished for a magic wand to create a support network at every oncology clinic for the caregiver whom the medical community assumes can and will manage complicated medical care while grappling with their own complicated and sometimes overwhelming emotions. Though I did achieve my initial goal, I walked away feeling like there was so much more that needed to be done.

Over the next two years, I had other opportunities to talk about the impact cancer has had on my life and on my family. Each time I spoke to a group or met with a cancer-related medical professional, I brought the caregiver’s role and needs to their attention. I wanted to shine a spotlight on the person in the treatment room who is so often overlooked, along with his or her needs and abilities. Although I couldn’t travel and give talks and advocate for the caregiver’s silent plight, I thought a book could reach so many more people.

I wanted my story to be useful to others, not a tell-all about the professor who wrote
The Last Lecture
. I started by using my JCC talk as the basic framework for my narrative and explored the unique challenges and complex issues I had faced as a caregiver. I spoke with grief counselors and palliative care doctors and met with dozens of caregivers for both cancer and Alzheimer’s patients. Although each person’s experience is unique, the overarching struggles are universal. Mining my own experiences forced me to dig into a wound still raw and painful, which had both positive and negative effects on me.

On the upside, writing has been a tremendous aid in helping me to heal myself; the process allowed me to see my strength and resilience. I’ve been able to move forward in a new direction for myself and my family. It’s also given me the opportunity to come to peace with a lot of bad stuff that happened.

On the down side, I’m not able to put my past behind me completely. My years with Randy get brought up in some way, shape, or form every day. It could be an e-mail from a pancreatic cancer advocacy group or someone recognizing my name that resurrects my past. Three and a half years after Randy’s death I still suffer from nightmares, talking in my sleep as my subconscious relives the most traumatic moments during that very trying time in my life. My new husband, Rich, wakes me from my nightmares, quiets my sleep talk, and soothes me back to sleep. It’s not the way I wanted to start a new chapter in my life. It’s not the happy Hollywood ending I was hoping for, but I know my story doesn’t end with this book.

Ultimately, my dream is that my story will legitimize what caregivers undergo willingly and bravely as they care for a person they love. Patients need and deserve support, but it’s time for us as a community to understand the suffering that is shouldered, sometimes silently, by our family members, neighbors, friends, and coworkers. We need to offer help to these people, to develop and implement programs at cancer centers and other organizations. We need to empathize with that person taking on the duty of overseeing the patient’s care and well-being. Finally, we need to care for the caregiver.

S
O I CAN PICK UP
the block and throw it?” Randy asked incredulously. He was learning about computer graphic research at the University of North Carolina, where I was working while studying for my PhD exams in comparative literature. Randy was a computer science professor at Carnegie Mellon University in Pittsburgh researching virtual reality and human-computer interaction. Standing in the virtual reality lab, he looked like a thirty-seven-year-old kid playing a Wii video game, game controller in hand. Instead of viewing the computer-generated world on a television mounted on a wall, he was looking at a screen inside a specialized helmet. Nowadays, many Americans are familiar with holding a device to make objects or avatars move within a video game. But fourteen years ago, this technology was not yet mainstream, nor was it a game; rather it was an experiment to see how compelling virtual reality could be. In this demonstration, throwing the block was not part of the program’s functions, but Randy didn’t know that, and
he was asking a million questions. I had noticed his inquisitiveness earlier in the morning as we toured other parts of the virtual reality lab. Walking beside him, I could tell he was genuinely interested in our research, soaking it all in. It was obvious to me he was smart. What else would you expect of a Carnegie Mellon professor? But Randy was surprisingly down-to-earth. When I had first met him that morning, and in previous e-mails, he insisted I call him Randy, not Dr. Pausch. He had no need to stand on ceremony or demand acknowledgment of his title, which was a very refreshing change from the norm in academia. I felt instantly comfortable with him even after having only just met him. And I wanted to get to know him better.

I was taken with his easygoing and playful nature. I guess that’s why I tricked him. “Oh, yes, you can throw the block into the next room”—I lied when Randy was trying out the pit demonstration. So he picked up the block with the game controller, raised it over his head and gave it a good toss. “It didn’t work!” he exclaimed. “Well, you must have released the button too soon,” I said. I looked around at the graduate students who were running the research demonstration. We smiled and laughed a little, all in on the joke. Randy tried several times to pick up and throw the block until he must have heard us laughing. Then he lifted up the helmet, looked at me with a twinkle in his eyes and laughed along with us. It was love at first sight between us. I could see this six-foot-tall, thick-dark-haired, smart man who had a great sense of humor and was so secure with himself. He must have thought I was attractive and maybe a little bewitching because he asked me to meet him that night. Of course, I was thrilled and accepted his invitation. I literally sat by the phone waiting for him to call after his dinner meeting. As the time of his expected call came and went, I figured he had changed his mind,
that I had been imagining the connection I had felt with him earlier in the day, that I had fooled myself into believing his intentions were serious. Then the phone rang. Randy apologized for calling me after he said he would, but the meeting had run late. He really wanted to meet me and hoped it wasn’t too late. I picked up my purse and headed out the door with my heart pounding.

It’s bittersweet for me to think about how we first met and started dating, how I came to trust him and believe in him enough to try marriage one more time. I had had a rocky first marriage to my college sweetheart, which left me cynical about marriage and my ability to find a man who could stay true to those timeless wedding vows to love, honor, and cherish. Looking back on those first days and weeks pains me so much. It tears open the wound that has only begun to heal. It hurts to think about that first date when we walked along Franklin Street in Chapel Hill and held hands. I had to reach for his hand to hold him back a little, to keep pace with him, because he was such a fast walker and I was much slower. I remember how soft his hands were, how hairy his knuckles were, and that he bit his fingernails just like me. When we held hands, he would sometimes rub my fingers close to the knuckle, which melted away all my stress and left me boneless. It wasn’t a “yin and yang” attraction. It was that we somehow fit together—intellectually, playfully, and emotionally.