April 2018

Thursday, April 9, 2015

Life and Death in Cuba

Monday night, Ann and I returned from two weeks in Cuba, a place we have both wanted to visit for a long time but had supposed might be off-limits to me since my neurosurgery and disabilities. With this trip, we celebrated our twenty year anniversary of committing to live our lives together so long as we could both live in truth to who we are. (Well, we opened our present early: April 17 will be the actual date.) 

It's been an amazing--and sometimes intense (i.e. the brain tumors)--twenty years, and the trip was amazing and intense, too. This was just our second international journey since my neurosurgery eight years ago. On our first trip, we went to Puerto Escondido in Oaxaca, Mexico, with a group of good friends who understand my disabilities. (Susan actually revels in my need for naps and adopts them as her own). This group helped support me and gave Ann a break from time to time, so that she could go for a fast walk along the beach while I napped in a hammock. (Susan was in another hammock.) That's a win-win-win.

This time we went to Cuba with 22 strangers from across the country, part of a Road Scholar trip. (I highly recommend them.) Like Blanche du Bois in Tennessee Williams' play A Streetcar Named Desire, I have always depended upon the kindness of strangers. In this vulnerability, strangers often become friends, as happened along the ride from Santiago de Cuba in the East to Havanna, further west. 

The trip was intense in terms of what we saw and learned about Cuba and in terms of the group's connections with one another. 

On the flight from Seattle to Miami, I began reading Atul Gawande's book Being Mortal. I would have read more of Road Scholar's recommendation, Everything You Need to Know about Cuba, because at that point I'd only read half of what I needed to know, but Ann was reading about Russian cooking on her Kindle where Everything I Needed to Know was, so I went to a book that I keep hearing people talk about. As it turned out, Being Mortal set the stage for our Cuba journey.

The book's subtitle is Medicine and What Matters in the End, but I think Gawande could have left it at Medicine and What Matters. In the beginning, Gawande reviews the history of aging and the unnaturalness of so many people living to be so old as we do now in the United States. (One statistic that sticks with me is that in Ancient Rome, the average life spanned 28 years.)

Having noted our unnatural tendency to live long lives in the industrialized 21st century, Gawande describes the ways we do not care for people who are aging. The medical paradigm, he says, is to cure, not necessarily to improve, a person's lot who is on a predictably downward trajectory.

So here I was traveling in a developing country with 23 others on a predictably downward trajectory. (My friends Marcia and Terry would have dubbed this trip "the upside of downhill.") Gawande's observations about cultural attitudes towards those who are aging resonated with me as a person who has disabilities that will not be cured. Gawande writes, "It seems we've succumbed to a belief that, once you lose your physical independence, a life of freedom and worth is simply not possible." He implies of course that a life of worth is still important, and I embrace his idea.

I argue daily against this cultural assumption that life on the downward trajectory is not worth much: I argue in this blog and in the way I live my life that my life is still worthwhile. In this insistence, some of the quotations from older people resonated with me. One said, "I want to be helpful, play a role." Yep, that's me. In describing another, Gawande says, "She expected more from life than safety." This conjured for me the the film, The Right to Risk, and again I thought, "Yep, that's me. And here I am going to Cuba. I've done my research, and this isn't a frivolous risk, but I am taking a chance on coming to a place where there are few curb cuts or handrails (or--as it turned out--toilet seats.)" This right to take a risk is part of life's meaning: the right to live for meaning as Thoreau articulated it so beautifully at the beginning of Walden

I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life.

Replace "woods" with Cuba, and there you have my story, perhaps the story of each of us on this journey: I went to Cuba because I wished to live deliberately…fully…joyfully--not that Cuba is the only place I want to live in this way, but this is the spirit in which I want to live my life. 

To cite another source in order to put it a different way (and as an excuse to share another writer on this topic), in Breakfast with Buddha, Buddha responds to the question, "What is the meaning of life?" by saying, "The point of life is life" (Thanks, Sue!). He does not say, "The point of life is to keep on living." There's an important difference. 

So here were 24 of us on the upside of downhill, me the youngest at 51, and most others I'd guess in their 60s and 70s. We soon learned about one another that we had lived enough of life to be hurt by it: me with my disabilities, one woman traveling for the first time after her husband's sudden death, another confiding in me that she was a breast cancer survivor, another celebrated the life of a friend who had planned to take this journey with us but had passed a couple of weeks before, each of us with untold stories.

And on the journey we would meet others whose stories we only glimpsed: two friends of friends that Ann and I had dinner with were struggling with early diagnosis and health problems; also, we Road Scholars met with a "lively group of seniors," and over lunch I asked how people who are aging manage to get around the city with its narrow walkways and uneven terrain. Graciela, a woman I grew quickly fond of, rattled off a litany of bruises from her many falls. 

On our third night in Cuba, the Road Scholar Anitra came to sit by me during dinner. Anitra was funny and intense in that New-Yorker-grabs-life-by-the-throat (or wherever) kind of way, and she seemed to connect intensely with me, though I didn't know why. (This has happened to me from time to time since neurosurgery. Perhaps these intense connections are another aspect of the upside of downhill.) 

Anitra and I shared parts of our stories--my brain tumors and her breast cancer--until it was time to go. The conversation wasn't at all depressing. Such conversations never are. Those of us who have had serious health conditions understand one another in ways that others don't. We are peeps. Maybe it's like a secret society. There is grace in the connection, the feeling that someone understands me in an important way that I cannot articulate.

On the fourth day, we Road Scholars were visiting something old, and Ann and I had gone to the bathroom before touring. Going to the bathroom in Cuba is not a quick and easy pit stop: there's paying the Cuban quarters to the woman at the door who would hand us each two squares of toilet paper, the fishing around in my backpack for more soft paper, perching precariously on the toilet bowl sans seat, maneuvering the used paper into a can, not losing or dropping my cane, washing hands with soap or using hand sanitizer, and watching for all the uneven steps, big and small. 

As Ann and I emerged from the bathroom, Anitra--who had been behind us--came out laughing hilariously. "I dropped my sunglasses in the toilet!" she hee-hawed, and held up her dropped glasses. 

This would be the last time I would see Anitra. Later that day, she stayed back from the group because she wasn't feeling well. There she suffered a stroke and was taken to a hospital for emergency surgery that didn't go as hoped. Our guides were clearly shaken as they told us her prognosis. She would never wake again, and when Ann and I traveled home, our first email would be a link to Anitra's obituary.

Our guides was clearly upset--maybe even angry--that Anitra had taken such a chance on her life by traveling in this developing country, but in the end, one guide gave a lovely eulogy: "Anitra was an audacious woman. ['Audacious' was part of a group vocabulary and had none of its sometimes negative tint. It simply meant that one was sucking the marrow out of life.] Our guide continued: "She lived her life fully to the end."

As I finished reading Being Mortal on the long plane ride home, I continued to think of Anitra. Gawande writes, "For human beings, life is meaningful because it's a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens." For Anitra, it seemed that something was always happening, and that's because she seemed to live her life that way. For me, Anitra is now part of my story. 

The end of Anitra's story is especially important to me. As Gawande writes, "Endings matter, not just for the person but, perhaps even more, for the ones left behind."

In the wake of my brain tumors and in this life with disabilities, I am determined to continue living a life that matters. I am even more determined to live every moment fully than I was before I experienced my own vulnerability. 

In this way of living and dying, Anitra has been a guide who has gone before. I don't know the way once the dark comes, but I am not afraid of it. I am more wary of not living than I am of dying. 

I continue to see Anitra as my mentor, like my guardian angel (with a lively sense of humor). From her and from the whole trip, I gained so much more than I expected in Cuba. 

For me, this is how life goes: gift after gift after surprising gift. 


  1. Thank you Mary, this was a much greater 'report back' than "what I ate on my vacation"!

  2. Thank you for sharing this Mary. I was Anitra's companion for the past 7 years, and it's comforting to know that she was engaging and educating and enjoying life to the end. I hope she continues to inspire and motivate you as she does me and the countless others who were fortunate enough to be a part of her life. Paul


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