Several years ago, I was back east. My dear friend, Cheryl’s, mother had died after a long illness, early-onset Alzheimer’s. Cheryl had been her mother, Daisy’s primary caregiver since she was a 25-year-old psychology intern. Fortunately, Cheryl lives in her childhood home in a wonderful neighborhood. When I visit her, neighbor’s come over to greet me because they know that I am one of Cheryl’s people. Nonetheless, it was incredibly difficult for her, a single woman finishing up graduate school and starting her career, to care for her mom. Cheryl has her own health challenges, which are exacerbated by stress, and required multiple surgeries during her mom’s life. After several years, Daisy entered a nursing home.  As her life neared its end, her best friend, Shirley, a retired nurse told Cheryl that her mom’s time was coming to a close. It is so hard to know exactly when someone is going to die and even harder to let someone go. Daisy had been a single parent to Cheryl and they were very close. She died before a priest could come out to perform last rites, Anointing of the Sick. The parish priest did come afterwards and performed the final Roman Catholic sacrament.

I arrived a few days later. A group of neighbors set up a repast of Trinidadian food that had been brought by caterers (Cheryl’s parents were both from Trinidad) while the rest of us attended the funeral. The officiant had been Daisy and Cheryl’s parish priest many years before and was now a cardinal and a family friend. The service was beautiful. One of Cheryl’s friends, a neighbor, sang. The cardinal also sang parts of the mass and he had a very nice voice. After mass was ended, we went to Cheryl and Daisy’s home for the repast and celebrated Daisy’s life.

I stayed on for a few days. I went to mass at Cheryl’s parish. The priest who had performed Daisy’s last rites presided over mass. The theme of his homily was “what are you waiting for?” To my horror, he used the story of being called to perform last rights on Daisy after she’d died. He went on and on. I left church humiliated and livid on behalf of my dear friend who had been nothing but a wonderful daughter not to mention the fact that he knew that she was not only a member of his parish, but one who had just lost her mother to a truly horrible disease. Both Cheryl and this priest had a story about what had transpired. They were very different stories. It is easy to call one of them right and one of them wrong. I know which one I would call wrong!

I have not written any entries in this blog for nearly a month. I have used the month thinking about the stories we tell that provide meaning to us in explaining our life experiences. Breast cancer survivors tell lots of meaningful stories. So do heart attack survivors, by the way. Not surprisingly, they are some of the very same stories about “kicking illnesses ass”, about “being given a second lease on life”, and even the perception of illness as a “gift”.  There are also the stories of “My life will never be the same” and “What’s going on? This is horrible!”. There are also national heart awareness days, including the recent “Wear Red Day” to raise awareness of cardiac disease in women, the number one cause of women.

I have been living in a particular breast cancer blogging community for nearly six years now. I find that I bristle at some of the narratives told by heart attack survivors. I have also not delved deeply into the cyber community for SCAD survivors. There is a lot of raw terror in that community. It makes sense. Most of the women are young, had a heart attack out of the blue, and they have cardiologists who don’t understand their condition. Those are the women who have a narrative of chaos and literal heartbreak. I don’t bristle at their stories. I just feel very sad for their suffering. It’s the catch phrases used by the women who by all appearances seem to be coping well. They are the ones who are more likely to use the phrases that are so controversial in the breast cancer world.

Yesterday, I thought back to perspectives of my friend and the priest around Daisy’s death. The priest’s actions were clearly “wrong” in that they were unskilled and did not demonstrate compassion for others. The stories they told were very different. I do think that Cheryl and the priest shared something very important. They were both dealing with suffering. How was the priest suffering, you ask? Admittedly, I don’t know his mind but I have some guesses, based on his job. Priests are on-call constantly. And they are on-call for decades. Not everyone is up to that every minute. I can see someone getting wrapped up in the stress of this and having a fit about an inconvenience. This does not excuse his behavior but it offers a possible explanation.

The stories we tell may either help or amplify our suffering. The helpful story I tell myself may be one that would cause suffering to someone else in a similar situation. This is why the “cancer is a gift” narrative doesn’t bother me the way it does some others. I can see that it may help some people. As long as people don’t explicitly tell me how I should view my own life experience, I am fine with it. What I have been struggling with is the backlash against these narratives. It is one thing to say, for example, “Cancer was not a gift for me” and quite another thing to say, “Cancer is a gift to no one.”  To me, that causes the same problem as the one that is trying to be solved, that is, prescriptive language that defines experience.

But really, what does it matter to me? And who am I to invalidate anyone’s personal characterization of illness, just based on the ideas? If you want to tell me that “cancer’s a gift”, that’s fine as long as you are not my husband or another close loved one. If you want to tell me “cancer’s never a gift.” That’s also fine. If you don’t like the word, “journey” or any other phrase or word that is currently popular, that’s fine. I define my own experience. And the narrative that I am putting together is dynamic and at times, very messy. I respect myself. I respect you.

As always, I wish you peace, joy, and to be free from suffering.