Ohana

A cool breeze rifles my hair from the hammock under the vanilla tree just steps from the aqua blue waters of the Pacific ocean off the coast of Maui. A week ago I arrived as a newcomer to this island, and a stranger to the fourteen other cancer survivors who shared this special place with me. Now we, as well as the staff and other teachers we have had the good fortune to interact with this week are ohana – “family” in Hawaiian.

This incredible experience was provided to us through an organization called Athletes for Cancer whose mission is to enrich lives impacted by cancer through the healing power of the elements and the tenacity of the human spirit. They fulfill that mission with surfing, stand up paddle boarding and snowboarding camps for cancer survivors in Hawaii and Hood River, Oregon. Camp Koru is healing in so many ways. At the outset, just the connection with the incredible beauty of this place and its natural wonders: the water, fragrant flowering plants and the towering volcanic peaks provide a sense of peace not readily available in the fast-pace of the mainland.

For some, just being in the ocean was a new experience that required them to overcome a fear of the unknown. For others, sharing their story for the first time with other survivors was an opportunity to connect with those who have been there. Putting words to an experience that engenders such turbulent emotions is not always easy, but definitely feels safer with someone who has walked a mile in your shoes. With our scars, buckets of meds and all their assorted side effects, sometimes unusual diets, prosthetic and missing parts, not to mention the emotional impacts of facing your own mortality, we can sometimes feel like misfits among the general population. But here, we are just like everyone else, or even realize perhaps that we didn’t have it so bad, after all.

As it is National Young Adult Cancer Awareness Week (April 1-7) it is appropriate to reflect on how far we've come. Thirty, or even twenty, years ago, there were no services for young adults with cancer, and probably most oncologists wouldn't even recognize that young adults got cancer at all. Now, there are a number of programs, camps and other services for those of us diagnosed between the ages of 18 and 40.

The natural world has always been healing for me, the water especially. Just hearing the waves lapping against the shore as I drifted to sleep at night soothed my soul. Returning to camp each evening after surfing and paddling all morning and hiking or exploring coastal towns in the afternoon with aching muscles and a kind of satisfying weariness made sleep welcome and easy despite less than luxurious, though completely adequate, accommodations. The food, however, was world-class. As someone with a really healthy diet, I always give a fairly significant amount of thought to what and where I’m going to eat. It was so great to have incredible, gluten-free, veggie-laden meals with vegan options prepared for us each day by an amazing chef who volunteers his services for the camps.

Excited to paddle an outrigger canoe, I had no idea how much the blessing and Hawaiian ceremony conducted by a native before and after our paddle would impact me. With tears streaming down my face, I listened to the prayers in wonder even though I didn’t fully understand their meaning. Kimokeo’s presence alone was so powerful, and his chants, songs and blessings filled me with hope and peace.

I came to Hawaii to rest, and to learn to trust. We were each tasked with choosing a power name for ourselves during camp, and I choose Kale`le`, which means “to have faith” in Hawaiian. At the beginning of the year, I left my job of five years with a nonprofit I founded in order to serve single cancer survivors. Even though I have accepted the fact that I am a “starter,” it is still scary to take the risk to start something new, again. A six-month consulting gig ends in June, and I don’t know where my income will come from after that or how much it will be or what my work will look like.

An intuitive told me once that I was like a dolphin (an animal I have strongly identified with) confident that there would always be more fish. I haven’t quite been able to embrace that philosophy yet as fear of having enough money and being able to pay for my health insurance is ever present. Coupled with that is the fact that I am currently in the middle of a recurrence of ovarian cancer with six masses in my abdomen that aren’t causing any problems yet, but could at any time, requiring surgery. It definitely requires all my trust and faith that things will work out, that I will land on my feet, that I will have the opportunity to make a difference and serve single survivors while supporting myself in the process.

Kalele.

Loneliness

Most of the time I am very satisfied, even ecstatic, about my life as an independent, single woman. My lifestyle allows me to do the things I want to do when I want to do them. If I feel like staying in bed all day on a cold, rainy Sunday afternoon reading a book, I can do it. When I want to jump in my car or hop on a plane for a fun weekend get-away, only my budget might prevent me. There are no demands from a partner or children that get in the way of my needs. I feel lucky to live in a time and culture that allows me the freedom to live independently, and I make the most of that freedom to live the kind of life that I want to live.

Ninety-five percent of the time, I am completely happy with my life. However, the five-percent can be really difficult, because there are those times when no one relishes being alone – when the toilet overflows, the car breaks down or when you get sick. I also tend to feel really alone during either times of great celebration or mourning – usually on a large scale: Princess Diana’s death, 9/11, when my candidate wins an election or the beginning of a new year. These are times you want to share with others.

Whenever I read a Jane Austen book, or watch a movie about a different period in history, I am often thankful to live when I do, in a time when women don’t have to marry in order to gain protection and financial security, when I am free to work, dress and live how I choose. I also see the drawbacks of modern-day culture as well. As technological advances allow us more virtual connectedness – playing chess with someone in China or teleconferencing with business associates around the globe – it can also sap meaningful face-to-face connections.

I was recently with a group of friends at brunch and looked up to see most of the people around the table furiously using their smart phones rather than engaging the group in front of them. I admit to loving my iPhone for allowing me instant access to all kinds of great information and entertainment, but it drives me crazy when updating people in the virtual world takes priority over the warm-blooded human being sitting in front of you.

As more of us choose to live independently because our finances allow it, remaining single longer, divorcing more readily and having fewer children is becoming more and more common. These trends are also causing more isolation than at any time in human history. Primitive cultures forced people to live and work together in order to survive. I wonder about the emotional cost of our modern culture, and what physical outcomes can arise from loneliness and disconnection.

Dr. Dean Ornish (1998) stated at the beginning of his book Love & Survival: “Our survival depends on the healing power of love, intimacy, and relationships. Physically. Emotionally. Spiritually. As individuals. As communities. As a culture. Perhaps even as a species.” (p. 1) Dr. Andrew Weil (1997) also postulates about the communal nature of human beings meant to live in families, tribes, and communities, and says that when we lack those connections, we suffer.

Perhaps loneliness and lack of connection can actually contribute to poor health. It certainly is difficult to be alone when we are sick. Whether it’s a sore throat, the flu or cancer, not having someone at hand to take care of us when we’re not well is a big fat bummer. I have long been interested in supporting single folks who are dealing with cancer. While there are a multitude of resources for cancer patients, there is nothing specifically for those of us going through it alone, and that number seems to be rising as cancer strikes at younger ages, while many of us put off marriage until later.

I recently conducted a survey of single cancer survivors to gauge the needs of this audience. Mostly the results weren’t surprising; the issues you would expect floated to the top: dating anxiety, body image, loneliness, fertility problems and a desire for more support.

One man said, “I still struggle with what to tell anybody I meet, especially women I’m romantically interested in, about my medical history. I had a scar revision to replace my original thyroidectomy scar that looked like something on Frankenstein’s monster. Even though the new scar is fading, I’m still conscious of it everyday, and I make sure it’s covered up by whatever shirt I wear.”

More than 75% of respondents reported that connections with other cancer patients who were like them were the most helpful during treatment and afterward. It’s not as lonely when you can share with others who have gone through it or are in the same boat.

The stories that were shared broke my heart, and rang true to my own feelings in many cases as well. Many single survivors feel like damaged goods with their weird scars and other bodily impacts of cancer, loss of fertility in many cases, and sometimes crushing debt. Single people might already feel as if their status were based upon being flawed in some way, and cancer certainly multiplies that feeling. “Who would choose to be with someone who might not live that long or can’t have kids,” we think?

One woman shared, “I am now five years out and finally beginning to feel normal again, but in five years, I have not been on one date. I want to get married. I want a boyfriend. I just want to go on a date. But for now, I am a 42-year-old spinster who got breast cancer at age 37, lost her chance for children, and has yet to meet the man of my dreams.”

Some report serious financial issues or lack of health insurance, and having to move back in with their parents for help, and a significant number shared how overwhelmed they felt having to make so many huge decisions on their own.

One woman said, “I often don’t feel I have much to live and fight for. So many times you hear people battling cancer say things like, ‘If it weren’t for wanting to be with my spouse, I don’t know how I could have done it all.’ Or people want to survive to be there for their children. If my life ended, it wouldn’t really be a big deal to anyone but my mom, so motivation is pretty hard to come by when you’re faced with side effects, stress, anxiety, bad news, uncomfortable tests, horrid procedures, putting your life on hold, debt and never having any time or money or energy. And all for what?”

Loneliness can be so damaging, and not just for those of us facing serious illnesses. My hope is that we don’t continue on the unhealthy path of foregoing real human connections. They are truly what make life worth living.

If you know a single cancer survivor who might want to take the survey, send them here.

Citations

Eight Weeks to Optimum Health (1997), Random House, Andrew Weil, M.D.

Love & Survival: Eight Pathways to Intimacy and Health (1998), Harper-Collins, Dean Ornish, M.D.