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Posted on March 7th, 2017

The Geography of My Mind – Support

I was invited to speak at a cancer support group for people with advanced stage illness; as in, more than likely they are going to die soon. A truly sobering experience. Not just because I was sitting around a table with seven people who very easily might not be here much longer (I mean, technically we could all die tomorrow…), but for many of them how candid they were about it. One lady – who when I sat down next to her and began to speak, turned off her oxygen tank because it was buzzing so loud she couldn’t hear – spoke very matter-of-factly about how she had exhausted all the drugs available, and now she was trying to make it through on what was “left of her drive.” I had mentioned that I’d not too long ago switched coasts from Oregon and she talked about having just visited her son in Astoria, where the movie The Goonies was filmed. She said that she wanted to make it out there to see her son and daughter-in-law’s home before she died. This was at Christmas time; her mom had just died, she had just been told that there was no further treatment options left. That is more than the average person could bear, I would think. But, her son also told her that she would be a grandma soon. That really put things into perspective for her. She said that, “all in all, the news was more positive than negative.” She ended her time by saying she hoped she would live to meet the baby.

One man who had Stage IV lung cancer was talking about his college-aged daughter who came home for Christmas. He thought she would be there for a week or more. In the end she only stayed for three days. When he asked her why she was leaving so soon, she replied that it was “too depressing” to be there. He chuckled, and said, “What can you expect from a teenager?” I cringed. It made me immediately reflect on all the times I’d blown off family engagements or left my folks earlier than they’d liked solely to pursue my interests, not really weighing theirs. I wondered if I still would have done that if they were sick when I was younger. I hoped that I wouldn’t have, but knowing my former younger self, who was quite selfish (and still is, really), this man’s comments perhaps were a little too close to home for me.

Another man, clearly downtrodden, tried to awkwardly laugh his way through his retelling of the state of things in his life. He, too, had been told that if this last drug didn’t work, he wouldn’t be here any longer. He felt his life was in the hands of a little pill with drastic side effects, solely to stay alive. He said that his wife didn’t like it when he was so depressed around the house; she had caught him crying once and chastised him for not being strong. Because of this he has to wear a “costume” around his wife so that she thinks he is okay. He’s not. But it’s his cross to bear, he said, and he’ll do so. I had brought in some fliers of a hiking program I lead for people with cancer and survivors. He carefully, and nervously, stacked them all up in order and walked the remainder over to me, thanking me for coming in. He was clearly a good person. I wished I could do something for him.

As you’ve inferred by now, I was there to speak about my hiking program. The last time I lived in Colorado I volunteered for a similar program in the Boulder/Denver metro area. It was a great success, taking dozens of people every week out on day hikes and retreats, helping them realize the potential of nature to bring catharsis and release to the lives of people who really need it. I was profoundly affected by my time volunteering with this organization, and because of this, knew that when I landed somewhere more permanently I wanted to start something in the same vein. And I did. And while it has only been up and running less than two months, I’ve already seen the good it can do. But it forces me to face reality and the inevitability of death and the unpredictability of life. These are also good things; not that we’re likely to become ill and will all die, but that I’m thinking about it. I guess it has its own catharsis about it…

The program is more geared towards those who are physically able to get out and hike. We cover between 3-6 miles every Saturday, so you have to have some level of stamina. This morning (2/04) we went out for a four mile loop; it was 28 degrees and peaceful. But I also recognize that those further along in their diagnosis need nature too, just in smaller doses, and on more stable ground. One woman from that advanced stage group contacted me. She uses a walker now (mid-50s) and her breast cancer spread to her bones. She is currently going through one more round of radiation; it wraps up on Valentine’s Day. She wanted to go on a “hike” to celebrate the next day, so we are. It will be on a paved surface, but it cuts through a large swath of forest and abuts a lake, so there will be beautiful scenery enveloping us. Her husband has “zero interest” in hiking so I’m happy to be there for her.

People asked me how I became interested in the intersection of health and leisure. I say that it is not as altruistic as you would think. While my grandma and mom were both in the health field growing up, that likely played a role, but it’s more a derivative of a timely and necessary research interest. But that’s not even the whole story. One day, god willing, I’ll be old. I’d like to make sure I know how to enjoy myself then. One day, according to the statistics, I could be diagnosed with cancer; I’d like to hope there will be support groups in place that speak to my needs and interests. So you could say I’m investing in my future as an old man with an incurable disease. There’s some gallows humor for you, mixed with a little good old fashioned American pragmatism.

I have had people my age and who were close to me die, but never because of disease. Disease kills differently than an accident or a murder; it does so slowly. No bandage being ripped off quickly with a disease; you see your loved ones slowly fade from your grip. I’ve read a lot about watching loved ones succumb to disease; how the sick and the well both lose parts of their identity inevitably as the illness progresses until you eventually realize that you are no longer who you once were. I’m interested in identity and how we cope with disease. And while most of those I referenced here will not live too much longer, a number of others I work with will. But how do they understand who they are after a diagnosis of cancer? Those activities, relationships and personal traits they built over a lifetime are jarred out of the lead when a serious illness is introduced. My goal, however unrealistic it may be, is to tap into the things that were meaningful before you found out you were sick; to reprioritize who you are. You should never be so-and-so with cancer. There are too many other identity markers that define you more truly. Cancer is solely an aberration selfishly trying to remake the person with a disease. The question remains, how do we remain ourselves when something so powerful and mysterious tells us otherwise? That is what I hope to help people find on the trail to recovery.

Marco Esquandoles
Reality Checker

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