Saying More

Tending to Ending (thirty-five)

Two weeks ago, when I wrote about CaringBridge, I typed out the name of the cancer my mom had and then I pulled it out again before sending out Tending to Endings. I questioned this decision–this is a blog about talking about things after all–but I hesitated because it seemed unnecessary for the point of the post, and it’s a cancer that is not easy to drop easily into a sentence without feeling the need to say more.

Ultimately, I decided that I would instead write another post about how certain diseases carry stigma that make them difficult to talk about, which of course can ultimately lead to more isolation during a time when community support could help the person and the family.

It makes sense that I would hesitate before putting medical information about my mom on the internet. There is a spectrum between public and private and posting on the web falls to one extreme. But stigma goes beyond that—it makes us hesitate even among close friends and family. It makes us question whether we are betraying a person by mentioning their struggle.

Alzheimer’s of course is one such disease. Many people feel they need to hide the symptoms. For my mom this tendency started in earnest only after she had lost some of her capacity to make decisions. In the beginning of her disease which was first called a mild cognitive impairment, she would be very direct. When someone asked a question she couldn’t answer, she would often say, “I’m having a problem with my memory. Can you remind me…”

Years before she was diagnosed, she was aware of memory changes, which she attributed (and may well have been at that time) due to normal aging. Still, words she shared with friends and family in a book of collected poems, seem prescient now.

It was later, in the last couple years of her life, that Mom treated her cognitive changes more secretly and I do not know whether this was fear of judgement or a symptom of her disease or something else.

I have been quite open about my mom’s Alzheimer’s on this blog. I believe she would agree that one way to relieve the stigma for others is to be willing to talk about it. Also, my mom and I shared a belief in storytelling as a way of finding strength. We may not be able to control outcome of all of the events in our lives, but in telling the story, we can choose our perspective, and this can be empowering and freeing.

The other disease my mom had was cancer of the vulva. You can say breast cancer these days or ovarian cancer or prostate cancer because of all of the people who have talked about these cancers in the past. But cancer of the vulva is still a bit much. It tends to stop any further conversation. Genitalia are not typically mentioned in conversation in our culture and when they are it is often as objects of desire or shame. Just mentioning my mom’s cancer feels utterly personal.

I often felt angry that my mom had to have this particular combination of illnesses. My mom was all about making meaning out of life and Alzheimer’s had robbed her of the ability to shape her own story. Then this second disease gave her intense, chronic pain in an area that is already sensitive. Because of the Alzheimer’s, she often did not know why she was hurting. Due to the shame that so often accompanies vaginal pain for women in our culture, I worried my mom would be afraid to acknowledge when she was hurting, or worse, feel somehow responsible for it.

I no doubt was projecting some of my own imagined responses onto my mom’s story. And in fact, my closeness with my mom during the last months of her life gave me a window into the ways my assumptions were wrong. Or maybe not wrong exactly, but one-dimensional like a flat character in a bad novel. I’m not saying there is anything good about Alzheimer’s or vulvar cancer, only that life with it can still contain good—and in fact contain a multitude of experiences. That is not something my fear presupposed.

My mom’s life was changed drastically by these diseases, and in ways that included pain, exhaustion, and at times, trauma. But her life also included curiosity and joy and contentment. During her five months on hospice care, there were many moments where she enjoyed eating pineapple or teasing my dad or telling us stories about my grandparents that I’d never heard before. She would grin upon spotting an egret or catching the eye of a toddler. She sit on the lanai and joke that it was so nice of the sky and the ocean to turn her favorite shade of blue.

And even later, when my mom’s memory and verbal skills had faded, she continued to shape her own story in ways that were both subtle and fierce. Watching that unfold was one of the most profound, reassuring experiences of my life. While my writing skills are not up to communicating the experience fully, a poem I wrote on CaringBridge the day before her death, reflects some of her strength.

Given the choice, I would not pick Alzheimer’s or cancer of the vulva for a way to go. But it is interesting to me that I have come out of that experience feeling less afraid of death and disease, not more. This is even true of Alzheimer’s which has long been a fear of mine.

I don’t know how to get past the stigma of vulvar cancer or any disease other than by first being willing to name it. For me the aim is not desensitization but rather the beginning of integration. By welcoming the unsayable into the lexicon of what it means to be human, I can begin to open. I see the disease has boundaries; I see the person again. Openness makes it possible for me to overcome fear and be in relationship with my community, with reality, with possibility. With Jane Stavoe in whatever way she shows up that day. Ultimately, it is a very satisfying way to live.

More Resources

On the topic of saying more, recently I was introduced to a podcast Death, Sex, and Money, hosted by Anna Sale. The show has aired since 2014 and is quite popular, so many of you may already know about it. I’m not sure how I missed it for this long!

It is billed as a show “about things we think about a lot, and need to talk about more.” Even in episodes with a different theme, death tends to make its way into the conversation. Which is how I think it actually should work in a more perfect world: that discussion of dying weaves its way into many conversations because it is such a common and profound human experience, rather than being relegated to Death Cafés or blogs that focus on focused on end-of-life.

One recent episodes that may be of interest is A Widow’s Guide to Grieving. As I listened, I was reminded of how many different ways there are to experience grief, and how refreshing to hear a variety of perspectives. I’m including the link to this particular page because it also includes a playlist on the topic of grief, which is one of the themes I get the most response from on this blog.

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