On Memorial Days past and present, just like on Christmas, many people think more about the real meaning of a holy-day and less about retail sales. I am among them. However, on May 31, I always add a special prayer of thanks for those who weren’t military heroes, but heroes of another kind. Here is a tale of life, near death, and survival that called upon many heroes I remember with enormous gratitude today.
“Why me?” “What now?” or “Can I handle this?”
You know the most common suggestion made to people facing serious challenges is, “Don’t ever quit; don’t give up hope.” I have a slightly different take on things, because from my personal experience I know that in any life-threatening situation, or even those that are not truly a matter of life and death, but simply feel like the end of the world as we know it – such as a divorce or bad break-up, the loss of a job, or the loss of a loved one – under any of these circumstances our first reaction is generally to wish that things would just go back to the way life used to be. But that rarely happens. And that’s when hope kicks in.
We hope we can deal with the outcomes, and we struggle to control the way the changes cascade into our lives. And mostly we see how little control we actually have. So we hope we can at least control our own emotions, and we struggle with the natural anxiety, anger, and fear that always accompany massive or sudden change. We hope and we struggle, we hope and we struggle, until there comes the day when you will say to yourself, if not out loud, “I’m not sure I can go on. This is hopeless.”
That’s why I’d like to take time to assure you, “When all hope is gone, you still have faith to fall back on.” Let me illustrate the difference between hope and faith, as I see it.
I want you to imagine you’re out alone on a sailboat on a beautiful afternoon. The sky is a cloudless blue, the sun is shining warm on your arms and back, and there’s just a gentle breeze coaxing the boat in the direction you want to go. Perfect! Then, as will happen in life as well as on the water, a sudden squall pops up out of nowhere. The wind kicks the water into a heavy chop and as you try to adjust the sails, you hope you can maintain your course. Then it begins to rain. Now you’re really struggling, with your fear as well as the sails. You’re cold and your muscles are tight and you hope against hope that you can control the boat’s direction to land safely on shore. And then POW a sudden gust topples the boat altogether. You are in the water; is that when you give up?
Heck no! You instinctively begin to swim for your life. Your arms scoop the water, your legs kick. Your heart is beating, beating, beating. You hope you will survive and you struggle against your fear to get to shore – any shore. Arms scooping, legs kicking, heart beating, lungs pumping – and then suddenly your realize you have nothing left; you’re going under; the situation is hopeless.
That’s when you remember my words, “When all hope is gone, you can still fall back on faith.” And that’s exactly what you do. You fill your lungs with air for buoyancy and you fill your heart with faith. And you lean back and float, trusting that the current itself will take you to a safe haven.
I can recommend this course of action because in the Spring of 2006, when the childhood liver disease I thought had been conquered decades before reared its head and impacted my daily life, that’s exactly what I did. The first few months, my husband Michael and I totally denied the seriousness of the symptoms I was experiencing – because denial is, after-all, the first phase in the process of death and dying. We just kept hoping my body would right itself. Once the forsythia and iris had given way to daisies and marigolds, it was clear that wasn’t going to happen. We turned to the doctors, hoping they’d have the solution. Unfortunately, there is no easy solution to advanced liver disease, but I did what the doctors recommended. I measured my food and liquid intake and took the medicines they prescribed to control the symptoms of disease. I hoped for the best and struggled with the side effects. But the downward spiral continued.
I turned next to the Internet and alternative medicine practitioners, hoping someone, anyone, would have a work-around. So then, in addition to the medicines and restrictions the doctors had advised, I put on a happy face, added goat milk and bone broth to my diet, and struggled with physical therapy exercises. Every one of these suggestions and medicines and protocols were helpful, but none of them are what truly saved my life.
I hoped and I struggled; I hoped and I struggled, until that day came – the day I realized how hopeless my situation was. And that was the real turning point for me. The day I accepted in my heart as well as in my head that I might not make it, and that whatever was to happen was the right thing to happen. Resting back on faith released me from the struggle and freed up enormous reserves of energy. What’s more, that faith connected me to forces more powerful than the human mind can even imagine. And through those connections came the dreams, and ideas, and people that ultimately saved my life.
Therefore, the first thing I’d love for you to take away from this is a reinforced belief in the power of faith. But right along with that I want to build your belief in the power of connections, because we are all connected. Connections are the foundation on which the natural world functions.
For example, as we humans continue to build roads and shopping malls so that we can travel conveniently between Asheville and Florida, Michigan, Ohio, and New York. As we pave over the world, we disrupt the great migration patterns of the birds. As the bird populations decrease, the insect populations increase. And insects eat our crops, make our lives uncomfortable, and spread disease. Unless we humans realize that we are just one small part of a grand network of connections responsible for maintaining the balance that allows life to flourish on this planet, life as we know it will end. However, if we adopt a philosophy of respectful coexistence with the natural world and community and collaboration with one another, there is no problem too big to be solved, no challenge too serious to be overcome. Connections are nature’s primary tool for growth and survival.
In 2006, one three pound part of my body was facing an uphill battle. And because the parts are all connected, when my liver couldn’t properly process food into new cellular material, all the fat began to disappear from my body. Good-bye tits, good-bye ass. Now, I know some of you are thinking, “Wow, that would be amazing, to lose fat without having to do diet or do exercise.” But in reality, the fatty tissue was just easy pickings and when it was used up, my muscles began wasting away. So between April and October of 2006, I went from 127 pounds of health, to 80 pounds of skin and bone and sloshing belly fluid. And because the parts are connected, as the liver struggled, so did the kidneys. And because the kidneys are part of the body’s hydration system, my skin grew dry and flaky and itched all the time. My sinuses dried out and I had trouble hearing and breathing freely.
And the kidneys themselves are responsible for removing toxins from the bloodstream. As they became less efficient, excess ammonia built up and the circulatory system carried it to my brain, resulting in a condition called hepatic encephalopathy. Kind of like a moderate to severe dementia. Just when I needed my wits about me to find a transplant center and get on a list and deal with insurance agencies, ordinary tasks became major hurdles – I had to keep notes on everything I said and did, everything”they” said or promised to do. My speech slowed down because I had to search to find the right words to put a sentence together. The connections had broken down – my liver, my digestion, my kidneys, my balance, my bloodstream, my judgment, my lungs, my hearing, my brain. I was dying.
But I was connected. We’re all connected, across time as well as space. I was connected through my DNA to a long line of survivors. Survivors of the holocaust, survivors of WWII, survivors of the Great Depression. And I can say honestly, they helped save my life. Read my book, Not Done Yet: A Tale of Transformation Through Transplant Surgery , you’ll see.
Just like the people best able to survive Hurricanes Katrina or Sandy, I too had social connections. Good friends and neighbors who drove me to doctors, labs, and drug stores. Others who ran errands for me, to the supermarket, the post office, and the library. And still others who shopped and cooked and delivered meals to our house, prepared one way for me and more tasty meals for Michael. They helped save my life.
And I was connected to people I didn’t know then and to this day have never met. People mentioning my name in prayer circles far and wide because they knew someone who knew someone who knew me. They too saved my life. We are all connected.
And remember those other-worldly forces I mentioned earlier? Well, one of them was my Aunt Evelyn who came to me in meditation one day. And she pointed me in the direction of her son, my cousin David, a retired attorney, who has a wise mind and a caring heart. David and his wife June had told me to call if there was anything they could do. So when I had made a list of questions about liver transplants I needed answered, but found myself not as smart as a fifth grader any longer, I turned to David to see if he could do the research for me.
He said he wanted very much to help, but that his expertise was limited to law, not medicine. However, he sat on several not-for-profit boards in Boston and was connected through them to people who worked at Massachusetts General Hospital. He gave me contact info for a top surgeon at Mass General.
I called on a Friday, not knowing if I’d get a call back from this very busy man who had never and would never examine me.
He did return my call on Monday morning, although he didn’t know me at all, because of the connection to my cousin. He too said he’d like to help, but his expertise was kidneys, not livers. (Pause.) He would connect me instead with the head of the liver surgery department.
That doctor took my call because of the connection to his colleague. When he listened to my list of questions, he told me they were the right questions to be asking…Where is the cutting edge research on liver disease and transplantation being done in the U.S.? Which are the transplant centers that have performed the greatest number of successful transplants? Where are the shortest waiting lists? And how do I get on a list?
But he didn’t have the answers at the tip of his fingers. He asked me to give him some time and he’d reach out to colleagues around the country and get back with me. Before the end of the week he too called back.
So follow along with me, now, as I recount the connections. My Aunt Evelyn in Heaven, my cousin David, a kidney surgeon hundreds of miles away, a liver surgeon, colleagues across the country – all these resulted in my connecting with the Center for Liver Disease and Transplantation at NY-Presbyterian Hospital-Columbia University Medical School. And they? They connected me with a 70 year old grandmother from Staten Island who, as she sailed away to her safe haven, said, “You’re not done yet.” She left behind a healthy 3 pound liver, useless to her, but the gift that brought me back from the brink of certain death to a full-rich life.
People ask if I feel my donor’s personality in my body. Other transplant recipients may have different answers, but for me that’s a “no.” Still I feel very connected to her every day. She made it possible for me to watch my grandchildren celebrate birthdays, graduations, and weddings. She made it possible for Michael and I to celebrate our 25 – 35th anniversaries. The miracles involved in our journey through sickness to health inspired me to write my book. She saved my life and I try to keep alive my donor’s generosity of spirit and courage through the volunteer actions I take in our local community, including speaking to groups on organ transplantation when asked.
Please join me in celebrating my donor as a hero and help me keep her spirit alive. If my words have influenced you at all, please register as a donor at “donatelife.net” and, equally important, speak to your family and your health care proxy as soon as possible. Tell them that when you leave this earthly plane, you don’t want to take your organs to Heaven because Heaven knows we need them here. Organ and tissue donation is our last chance on Earth to be a hero. Trust me, people will remember you.