This story is a beautiful ode to the love between two people, one dying, one living longer. I experience a lot of solace reading this and comparing it to my/our experience. Thank you, Susan.
"Don shared my sense of our being immigrants in the world of cancer. Fearful of time running out, we wanted above all else to find safe passage."
Wow! The perfect way to phrase our feelings, my wife and I, since - in early January this year - the surgeon said the words "cancer tumor" rather than the expected "ruptured appendix" to describe what he had pulled out of my gut during emergency surgery a week earlier. "Huh!!?? What next? Where do we go? Who do we talk to? What do we say? We don't know any of these words!" Most definitely a scary foreign land we had suddenly entered. Beautiful piece! Thank you!
My husband calls me Nurse Ratchitt when it is time to change his pain patches.
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My husband Phil, 52, is living with a terminal, untreatable disease of the brain that was diagnosed two years ago. Word recall was among the first things to go, along with his driver's license and his job as an R&D electrical engineer. Next came a rapid loss of word production, replaced increasingly with unintelligble sounds that had the cadence and tonality of language. Still, it was clear to me that he was making sense in his own head. Our 20-year history together gave me many keys to understanding him. Sometimes just from the utterance of a single word, or the tone of his voice or his posture I could get the sense of what he meant.
As time went on, he lost the ability to write, but retained the ability to read. When I became unsure if he was understanding the words I said, for a time I could rely on writing down important things: where we were going in the car, what we needed to do that day. When names lost meaning to him, I assembled pictures of the important people in our lives in a little book, so we could point to people.
For a time, I tried using sign language for eat, drink, and gestures for brushing teeth.
As the months have gone by, the sounds he makes have become detached from the things I say to him and from the context of our lives. Faded also are the connections I once made with him through our own silly words, songs, gestures or facial expressions. It was at this time that I truly came to grieve his loss, though living still.
As time went on, he lost the ability to write, but retained the ability to read. When I became unsure if he was understanding the words I said, for a time I could rely on writing down important things: where we were going in the car, what we needed to do that day. When names lost meaning to him, I assembled pictures of the important people in our lives in a little book, so we could point to people.
For a time, I tried using sign language for eat, drink, and gestures for brushing teeth.
As the months have gone by, the sounds he makes have become detached from the things I say to him and from the context of our lives. Faded also are the connections I once made with him through our own silly words, songs, gestures or facial expressions. It was at this time that I truly came to grieve his loss, though living still.
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My father, an Australian with Scottish heritage, also used "What watch?" as a tender code. He died of pancreatic cancer 4 months ago. In the eulogy I delivered I talked about how we talked about irrelevances - surname origins, finger print technology - as a bonding and 'stroking' function in his dying months. Talking just to talk.
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As always, Susan Gubar manages to find the moments of beauty and love within extreme suffering.
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Thank you for this tender, intimate column.
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I am 33. As I read this article and imagined myself caring for a terminally ill husband while trying to hold on to the intimacy of personal, shared communication between spouses, I felt ill. I don't know how survivors go on living after the most important person in their lives dies, and don't feel confident that I would be able to if it happened to me. It deeply disturbs me to watch my beloved parents grow older. I know that losing a loved one eventually becomes a nearly universal life experience, but how does one survive such pain?
I wish there were things I could do to become more resilient; less afraid.
I wish there were things I could do to become more resilient; less afraid.
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Yes, indeed.... When I was younger, I thought I would become wiser as I grew older. Perhaps in some things, but not about this.
Maybe the most important path to survival is to find others to love, as well. If one has no children and an otherwise small family, that can be more difficult. But you sound like a caring, thoughtful person. Perhaps you will make those connections *in time.*
We all learn from others, and certainly from Ms. Gubar, who in some ways acts as our *Virgil* as we face either the reality or fear of entering this strange country. Even just stumbling upon her columns reminds me that there ARE lovely *others* whom we have not yet met and who will enrich our lives.
Maybe the most important path to survival is to find others to love, as well. If one has no children and an otherwise small family, that can be more difficult. But you sound like a caring, thoughtful person. Perhaps you will make those connections *in time.*
We all learn from others, and certainly from Ms. Gubar, who in some ways acts as our *Virgil* as we face either the reality or fear of entering this strange country. Even just stumbling upon her columns reminds me that there ARE lovely *others* whom we have not yet met and who will enrich our lives.
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The only way to be more resilient is to endure things that require it. At 33 (or 46) I wouldn't have thought I could live through the loss of my husband; when he died (I was 47, he was 51) I still thought that. At 48 when I hadn't yet succumbed to the grief, I thought well, maybe I'm going to make it. At 52 I realized I'd grieve the loss all my life but wasn't, apparently, going to die from it. At 54 I remarried. Now I'm 56 and it's still hard for me to believe I made it through. The short answer to your question is that being resilient creates more resilience. I wonder how people live through the loss of a child, but I suspect they do it much the same way I lived through losing David. One minute, then one hour, then one day at a time.
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My husband and I speak to each other like this daily. We've taken lines from songs, movies, TV series. After thirty years of marriage, we've accumulated dozens of these, weaving them into our conversations, occasionally even when others are present (in which cases we're forced to explain). Neither of us has had a serious illness during this time, but we're both nurses, and I wonder if this is a spillover.
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Very interesting about the communication between family members. As an ICU/ chem RN I also share a communication with patients. First searching with comments about their care, about their interests, about their level of care all along looking for some common ground or relaxed moment I can use to continue to relate to the patient. Yes, it is a very interesting dance of connections I can use to ease the patient, communicate with words we both understand yet not conventional. All in just a matter of minutes.
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