When I was being tested for a kidney transplant back in 2000, a doctor in the transplant program said, “Well, you know, dialysis is just a bridge to transplantation.”
“How can you say that to me?” I replied, “I’ve been living my life on that bridge!” And indeed, I have built a good life for myself on that bridge with kidney dialysis since 1975. The bridge is a metaphor for any circumstance that we face in our journey, and my journey includes three failed transplant attempts.
Out in the world, I am asked questions like, “Dialysis? How could you possibly do that? I could never do that!” or conversely, “You’ve been on dialysis for how long? Oh, you’re so brave!” Is there fear at times? Of course there is. It’s unrealistic to think you can eliminate fear. It’s far more realistic, when you need to, to move forward right alongside and through that fear.
My prospective film––Life On The Bridge and its accompanying website, Lifeonthebridge.com––is a personal documentary, examining that fear and the belief that life is over. It is a story about overcoming adversity and shaping your own life, no matter what the obstacle, a message shared through my experience.
The chronic illness
Years ago, after more than a decade away due (thankfully) to peritoneal dialysis, I walked back into the dialysis unit. To my shock, I looked around and realized that, though the machines were more advanced than last I saw them in the mid-1980s, the attitudes of many of the people sitting in the dialysis chairs seemed unchanged: lots of apathy, lots of depression, lots of passivity. Seeing this situation revealed to me that I needed to help bust societal myths and attitudes related to those living with any chronic health issue, which are instrumental in keeping people in that negative space.
The website and the film offer two approaches. I present a message to the general public of overcoming challenges and creating a good life through the particular expression of my journey with dialysis.
On the other hand, the website is also directed toward those working in the kidney field.
Step #1: I offer nephrologists (and doctors-in-training), nurses, and the health care team resources that illustrate empowering perspectives on life and life with a chronic illness. Publications such as Living a Healthy Life with Chronic Conditions, by Kate Lorig, et al., an incredibly practical and comprehensive book on the self-management of health conditions developed by a team at Stanford University, is one such example. These references will provide ways of thinking that can open people up to the possibilities of a richer and more meaningful life.
To what extent can the patient be truly engaged if the physicians, nurses, and the rest of the team are not fully on board? Creating an environment where the individual with the health condition is fully engaged begins with engaging the doctors and the rest of the health care team. Authentic listening that’s two-way is absolutely required for an individual to arrive at a place where he can make the choices he needs to manage his care.
The language that people use send strong messages beneath the words. What does “chronic illness” mean to someone who hears it over and over again? What if doctors and nurses were to focus on a problem-solving approach and present the world of kidney failure as: “This is an ongoing health condition. It’s not going away. And here are the choices we have to manage it. Let’s see what works best for you.”
The Bridge website offers resources as well as original video vignettes designed to open up this conversation, raise awareness, and affect positive change.
Step #2: The patient. Unless a person really takes on his health condition, accepts the responsibility, and becomes a partner in the management of his condition, optimal outcomes will continue to be elusive. If people take on the notion that this is the end––the end-stage, the end of life––and stay there, they will not only be treated (albeit unintentionally) as a victim, but also eventually become one.
A problem-solving approach is crucial. A can-do attitude is crucial. Anything that can be done to foster that will help serve people. The technology is here. Let’s take a fresh look at what’s going on in the renal field and move it forward.
Be well. Be strong. Be here.