Imagine staring down your sixtieth birthday, being forced to leave your job, feeling your marriage teeter, and then–as if that was not enough–being leveled by acute complications of the liver disease you thought had been conquered fifty years earlier. That was me in April 2006. Talk about facing a mid-life crisis! I wasn’t sure I had the practical or spiritual resources to meet one, much less all, these challenges. In fact I did.
“Although the world is full of suffering, it is also full of the overcoming of it.” - Helen Keller
Below is an excerpt from my no-holds-barred memoir about the roller coaster ride my husband and I went on as we battled end-stage cirrhosis and the transformation that followed. Not Done Yet combines practical recommendations on physical and emotional resilience, insights on coping with terminal disease and the process of organ distribution, with intimate journal entries that model how to access the indomitable spiritual forces needed by anyone who has ever asked, Why me? What now? and Can I handle this?
Read a Free Excerpt: Introduction
I won’t take credit for saving my own life, though my friend Barbara likes to say I did. I know I fought hard and made a lot of good decisions. But there’s no denying that a helluva lot of what happened could only have been managed by divine intervention. Clearly the devil started out with the advantage. I was fifty-nine years old and diagnosed with end stage cirrhosis of the liver. There is no known cure for this disease, except organ transplantation, and the odds against that are staggering. Based on the latest statistics available from the Centers for Disease Control and Prevention and the American Liver Foundation, “Approximately 31,000 people in the United States die each year from cirrhosis.”
- Every ten minutes another person is added to the national organ transplant waiting list.
- There are currently more than 108,000 individuals waiting for organs.
- Approximately eighteen people die daily while waiting for life-saving organs.
- Success rates for vital organ transplants average between 80-90 percent.
- Only one in four people will receive a life-saving organ in time.
In April 2006, though, it wasn’t simply my health that was careening out of control. A cascade of terrible changes—physical, marital, and emotional—seemed to put my life suddenly on the skids. With the clarity of hindsight I can see that, in fact, symptoms of distress had been trying to reveal themselves for quite some time. I just wasn’t paying attention. Likewise, all the resources I needed not simply to stay alive, but literally to begin again in a brand new way were well within reach. All I had to do was listen, look, and ask.
This is a story of miracles—big and small, but never insignificant—being told by a spiritual realist. I am no one special, and I hope once you have finished, you will conclude as I have that you don’t have to be special to be worthy of miracles.
I think of this story as “a tale of continuous beginnings,” because I know now that there was no one point in time when the miracles began, and they are ongoing, in my life and yours. It’s up to us to energize them with our attention, that’s all.
Spirit Brings Me Home
Sunday night, November 19, after 10 p.m. Michael and I finally parked in front of my folks’ house on Long Island at the end of an arduous two-day journey from Asheville. I’d fought hard to stay remarkably upbeat during the previous few months of ever-more serious health challenges and ever-decreasing strength. That night I had to admit I was about at the end of my rope. All I could do was sit there while Mike and my dad moved the entire contents of our over-packed Subaru into the living room. There would be time to sort it all out on Monday after my first radiotherapy procedure for supposed liver cancer.
On that Sunday evening I didn’t even have the energy to put a pretend smile on my face to calm the fears I knew my parents must be experiencing when they looked at my emaciated and deformed presence. I just sat by the dining room table feeling the rush of cold air every time Mom held the storm door open to let Mike in with a carton or Dad in with a suitcase. Some part of my consciousness hovered over my head, looking down on my body—an inert part of an otherwise busy scene. I saw myself as the empty shell I’d become, like the old folks I used to avoid noticing when I visited Grandma in the nursing home. People just marking time until their time ends.
Our plan was for me to settle in under my parents’ care while Mike alternately worked at his job, hunted for an affordable Manhattan sublet for the unknown duration of our stay, and returned to Asheville to temporarily suspend our life there (at least through the winter, we expected.)
Instead, the very next morning, Monday, November 20, at 4 a.m. only two weeks after my evaluation as a potential liver transplant candidate at New York-Presbyterian Hospital Center for Liver Disease and Transplantation, and only six hours after we’d arrived in New York, Mike’s cell phone played its jazzy little tune on the tiny table in the small room that used to be my brother’s. Every inch of my body froze as Michael answered groggily.
I held my breath as he spoke in short bursts, “OK. Yes, we’re here in Bellmore.” Clearly it was not a wrong number or cell phone prankster.
“It’s about a 45-minute drive at this hour, I think. Yes, I understand. OK. Where do we go when we get there?”
Michael, who had been gazing intently at some vague horizon in order to make sure every detail was impacting his sleep-deprived gray matter, finally looked in my direction. The caller was Dr. Renz. His associate, Dr. Guarrera, was retrieving a type B liver they believed would be a match to replace my diseased and failing transmission. It was to be brought to the hospital within moments.
I think Michael and I were more together in that moment than ever before or ever since. Amazed. Elated. Frightened. Uncertain how to proceed. Only one thing was clear; we needed to move fast. How ironic, since everything about my liver disease had progressed so slowly until the last four months, the last two weeks, the last six hours.
There was still no sign of dawn outside. Just as he had parted the waters for Moses and the Israelites, God was allowing Michael and me to make this, possibly our last, journey before the New York rush hour got cranking. I reminded myself that sometimes a call to come to the hospital for transplantation can be a false alarm. A great deal can go wrong that might result in being sent back home to wait again. The organ could be the wrong size. It might have a defect that deems it an unacceptable risk. It might take too long in transport to the hospital or spend too much time in the prep process. Whatever. I did my best to stay calm and look forward to a positive outcome.
I took a shower and washed my hair, which turned out to be a good choice. From our hodge-podge of personal goods, I collected a nightgown, bathrobe, my favorite flax seed pillow, my journal, a crossword puzzle book, and the cozy lap blanket that had kept me comfortable across many road miles the past year. We took a big bag of my current prescriptions, though I had no real idea what was ahead or what I would need.
Once we had put microwaved hot tea into our carry-cups, Mike and I knocked on my parents’ bedroom door together to say our good-byes. As is their personal style, they were amazingly composed. We all told one another not to worry. Mike made promises to keep them informed. We crossed the lawn and got into the car. November 20, 2006, another day, another milestone, in a series of continuous beginnings.
© Sharon Lamhut Willen, 2013