A Rabbi's Take on the World of Kidney Failure

A Rabbi is, among other things, a spiritual leader, focusing on the spiritual health of individuals and groups. We know about physical and mental health. But what is spiritual health? By its very nature, anything involving spirituality, or the spirit, is incredibly challenging to quantify. You can't see it, but you can sometimes feel it. I think of it in terms of inner well-being and connection which leads to feelings of calm and peace within. This includes connection with one's inner essence, connection with others, and even connection with an energy or a light that is beyond all of us.

Spiritual health is important for every individual. This becomes intensified when one has a chronic health condition. The attainment of spiritual health then becomes more difficult and may take a greater amount of time. It is important, though, to give this process time. The opposite of spiritual health, in the field of chaplaincy, is known as "spiritual distress." Often, with the shock of the diagnosis of kidney failure, we can experience "damaged goods" syndrome. This is especially true when that diagnosis is not accompanied by optimal kidney education.

Before I continue, a little bit about myself. I have been doing dialysis for 48 years. Yes, you read correctly. I am the recipient of a miracle known as Dialysis. I say "doing dialysis" purposely, as I feel that saying “on dialysis" is inaccurate because for most of that time, I did self-care. Allow me to explain.

For me, using the term "on dialysis" implies a certain degree of passivity. It infers that I am "on it" while others do the treatment - initiating it, monitoring it, finishing it. When I say I "do dialysis", in my mind it is much more a reflection of my philosophy, which is that I have a particular condition, I accept what needs to be done, and I take responsibility for managing the dialysis therapy I use to keep me well.

So, I am now ready for your questions. Have you ever tried a transplant? The answer is yes, three, over a span of decades, and the three transplants lasted a cumulative total of about five difficult months. So, dialysis has always been my best friend, though I did not see it that way in the early years. In my life, peritoneal dialysis was my big time-off - no needles, more freedom. I did that for 12 years in my late 20s and throughout my 30s. For the past 20-plus years, I have been doing nocturnal home hemodialysis, which is, also, an excellent choice for me.

Each person has their own story and no two stories are ever alike. It’s never good to compare, but it is good to learn from others and receive tips on how to navigate. It is common to consider ourselves damaged when part of our body does not work, but an essential truth awaits us. As Dr. Peter Lundin (of blessed memory), a highly respected nephrologist and a dialysis patient since his college days, often said: "We don't live to dialyze, we dialyze to live."

Our spirits can all too easily be worn down as a result of the challenges of the disease itself, as well as by the attitudes of society and even well-meaning family and friends. Negative expectations from ourselves and others can impact our deepest part, and we must guard against that. Our condition will be with us one way or another for the rest of our days on this earth, but if we don’t manage it, our condition will end up managing us.

Even though part of our body may no longer function, our spirits can well remain whole and intact. We are here to give of ourselves with the gifts that we have been given. Each of us has a responsibility to do that, to figure it out and make it happen.

At the age of 63, after years of study and internships, I was ordained as a Rabbi. This followed my becoming a Certified Chaplain three years before. That journey deepened my knowledge of the sacred texts and how their wisdom is applicable to our lives and philosophies today. As I gained experience in providing pastoral care to those in need, I learned what it takes to work in a deep and meaningful way with individuals, always being aware of the connection between mind, body and spirit.

CONNECTION INWARD

To gain or regain spiritual health after a life-changing circumstance, we need to focus on the bigger picture of our lives. In order to do this, we need to focus on connecting with the deepest part of ourselves. As the details of living with dialysis or a transplant are ever-present, we absolutely need to learn all we can to manage our health and stay well. And that bigger picture, involves finding what in our lives gives us meaning and purpose. For some, it might be our work. For others, work is our livelihood, but we derive deeper meaning elsewhere. For still others it is volunteerism that provides a strong sense of purpose. We can find meaning in our lives through any one or combination of the following: family, friends, faith, community, music, nature, art, writing, pets. And this is not a full list!

CONNECTION OUTWARD

Connecting outward has layers of benefits. There is the comfort and calm that is the result of bonding within a community. When you are missed when not present, that is a true indication of belonging to a particular group. But community involvement does not stop there.

In the ancient wisdom, there is an emphatic teaching to not separate ourselves from the community. Living with a chronic health condition, such as kidney disease, there will be, realistically, periods in life when we need to pause from what we are doing and focus on attending to our bodies' needs. But once we stabilize, it is crucial to do what it takes to re-join our communities. While it may seem easier to stay at home in a safe place, that can lead to loneliness, isolation and, potentially, depression. We need to struggle to get back into the flow.

We must figure out what we need to do to get back on track, even if it takes a good amount of time so that we can contribute our gifts.

Each of us has certain gifts, and we have a responsibility to share them, despite the challenges. It is said that creativity is God's gift to you. When you express it by means large and small, it is your gift to others, even if it's a kind word or smile. If we abandon that sense of responsibility to others, we lose ourselves in the process. All of us change over a lifetime, especially when managing a chronic illness. One thing, however, remains constant - "I Still Count."

CONNECTION UPWARD

So far, I have briefly explored the notions of connecting with yourself and with others. There is a third notion to consider. And that is maintaining a belief that there is something out there far greater than our individual selves, an entity that created the universe with all that it contains - trees, flowers, animals, humans. It is something that defies our brain's ability to grasp and to put into words. Some call it Energy, Light or God. In the Jewish tradition, as in other faith traditions, when we rise each morning we give thanks for the return of our soul to our body. It is a Grand Mystery, and yet, connecting in this way can provide us with a great deal of comfort, knowing that, no matter what, we are never alone.

We offer thanks for what we have been given, this energy beyond our comprehension, but there is more. If we are to consider life this way, then we become open to the idea that it is a two-way relationship and our part in that is, as I have described, to give of our gifts in all kinds of ways.

GRATITUDE

Life itself is a miracle. Our bodies are miracles. It is astonishing to contemplate that even when vital organs don't work, the creativity that gave us dialysis and transplantation, also gives us options to manage our condition. These notions are not readily apparent when we are first diagnosed and/or begin treatment, but it is crucial that each and every one of us move towards a full integration of gratitude.

One of the teachings of Rabbi Abraham Joshua Heschel, a great spiritual leader of the 20th century, is that we view our lives, and the world itself, with "radical amazement." We are HERE in this great big, beautiful world of ours. Turning to this sense of gratitude again and again helps us to ride the ebbs and flows of living this life with an ongoing health issue.