“And if this isn’t a day when your universe has tilted and something precious you take for granted has not been suddenly irrevocably lost, bow before the mystery and let gratitude wash over you for the miracle of life, health, and this brief walk on our fragile planet.” ~ Carolyn Moore
It was a late afternoon in August of 2007 when my mother told me. I was in Western Massachusetts, getting ready for the opening night of a yoga teacher training. She was in Paris where she had been living for the last 25 years. We hadn’t talked in a few weeks, and I could tell from the tone of her voice that she was not calling bearing good news. “Are you ok?” I asked. “Are you sitting?” she answered. I wasn’t, but immediately sat on the edge of my bed, bracing myself. “I did not want to tell you right away, but I found out a month ago that I have cancer.” She paused for a couple of seconds, and then added… “cancer of the pancreas.” I don’t remember anything she said after that nor how I responded. I just remember the sinking feeling that my universe had just tilted and something precious I had taken for granted could very soon be gone and “irrevocably lost.”
She was 64 at the time, full of life and projects she was excited about, in a happy relationship with someone she had met five years before, and in love with her work. She did not want to die. And I was not prepared for that either. She was calling to tell me she would be undergoing surgery a week later. I got on a plane to France to be with her. The surgery went well, though the prognosis remained grim. In the weeks that followed, I did a lot of research and came up with what I thought were good ideas about what she could do to optimize her chances, but she was not particularly receptive to any of them. I was especially struggling with her decision to follow her doctors’ recommendations to undergo conventional chemotherapy, even though her gut was saying no. As I was confiding my frustrations to a friend, she said: “If you ever get cancer, you’ll get to do it your own way. But this is your mother’s cancer, and she gets to choose how she wants to deal with it.” That was clear wisdom delivered straight from the heart, and I heard it. So, I did my best to learn to become a caring witness to my mother’s journey, and find ways to support her without trying to interfere. One thing that really helped us was a book called “Help Me Live: 20 Things People with Cancer Want You to Know.” She and I read it together. It gave us entry points and words for the challenging conversations we needed to have. One day, I asked her these two questions (1) What do you find most and least helpful about the ways people respond to your illness and engage with you? And (2) What do you usually tell friends and relatives of someone with a life-threatening illness? She was at the time the director of the psychology department of a big hospital in Paris. A big part of her work involved supporting terminally ill patients and their families. She was also facilitating weekly support groups at the League Against Cancer. Accompanying people with life-threatening illnesses had been part of her daily life for more than 20 years. She knew a lot about what I needed to learn.
These were her answers to my questions.
What do you find most helpful?
Friends who ask me how I am doing rather than making assumptions. I like when people ask me: “How are you?” and “How do you feel?” That feels very different than people who say “I hope that you are feeling as good as you look” or “you look really wonderful.” Those last comments do not leave me much space to be where I am. I appreciate people who simply listen to what I have to say, and don’t volunteer advice without first asking me if I want it. It’s exhausting and confusing to hear everyone’s advice. And it’s upsetting when people assume that they know what’s best for me. I am grateful for people who are comfortable enough with themselves that they are able to talk about my illness and my fears. I also appreciate people who can do things with me without focusing on my cancer all the time. It feels good when people are still able to be with me in sickness as they used to be when I was in good health: friendly, happy-going, calling me up, and inviting me to do things, even if I cannot always say yes because I am sometimes too tired to do anything. One of my friends regularly calls to say he’s thinking of me and wants to know whether he can drive me to my chemotherapy session. We don’t necessarily talk about the cancer every time we connect, but he never avoids the topic, and he always asks how he can be helpful. I appreciate friends who acknowledge that I’m dealing with something challenging, but still treat me normally. I need to feel normal, and not just be defined through illness. I appreciate friends who are willing to take time to be with me, and let me know I can count on them for that. I also appreciate people who can be honest about their own fears, and sometimes say things like “I feel sad that you have to go through so much, and I don’t always know how to support you, but I am here.” I also really appreciate encouragement, people who help me believe in my capacity to heal, as well as people who make plans with me, and help me look forward to the future.
And how about least helpful?
People who have strong negative or melodramatic reactions: “Oh my God, I need to sit down. This is terrible news!” People who respond through the lens of their own fear or discomfort and want me to feel better so that they can feel better. People who systematically avoid the topic of my illness and pretend that nothing is going on, or always want to talk about something else. I prefer when people give me the option and say: “we don’t need to talk about what you are experiencing right now, if you’d rather not, but please know that I’m ok with it.” People who constantly give me advice, and have a hard time letting me just be where I am. People who try to fix me, rather than walk with me.
What advice do you give to the friends and relatives of people with a severe illness?
Let your loved one lead. Only talk about what they are actually ready to hear. Sense what they have the capacity to process. If they are not able to face the prospect of their own death, don’t force it on them. Do not lie, but do not say more than someone is ready to face either. Find ways to let them know that you are open to talk about anything, but let them lead. What people who are ill most need is to feel loved, to know that they matter. Feeling loved is the most healing thing. Don’t shower them with advice. Shower them with love. Another thing: gentle physical touch, like holding someone’s hand, is very comforting to people who are afraid.
Her answers to my questions really helped me navigate our conversations better, but sometimes, I would still be at a loss with what to say.
“Do you think I’ll make it?” she asked me once anxiously. I knew she wanted me to say “of course, I do,” but I could not say that, because that would have been a lie. And so, I spoke what was true: “I really hope you will, but I really don’t know what is going to happen.” I was desperately wishing that she could end up on the right side of the distressing statistics for pancreatic cancer, but the odds were too damning to count on that. Later, when my mother was in the final days of her life at the hospital, I got to talk with a colleague of hers who used to work in her palliative care unit. When, I told him about our exchange, he said sweetly:
Sometimes, it’s best to return that kind of question with another question. “Are you asking me this question because you are scared?” If you listen carefully to their answer, they will tell you what they are ready to hear. The best way to let them lead is to answer their question with a question. “Why are you asking? Are you feeling anxious and needing to be reassured?”
It was too late to course correct by then, and for many years, I regretted the way I had answered her question. I wish I had been more skilled, and could have been of more comfort to her at times. What put this regret to rest was a beautiful thing I heard Ken Cloke say in a mediation training he facilitated last Fall in California. I think he was talking about how to forgive oneself, when he said: “I learned to dedicate my mistakes to those who come after.”
That was a beautiful attitude, I thought. And it helped me realize that I do now know a better way to talk to someone who is scared for their life. And this is what inspired me to write this post, in case this could help a person or two out there.
On the morning of my 40th birthday, I called my mother from Indonesia, and found out she had just been rushed to the hospital an hour earlier. She had survived her initial diagnosis by nearly 3 years, and though the cancer had returned a year after the surgery and spread to her liver, she had continued working full time to that day. But now the wind had turned. She had just suffered a brain stroke and was lying in a coma in the same hospital where she had accompanied many others to the end of life for the last 20 years. I got on a plane the next day, not knowing whether I would arrive in time to say good bye. She miraculously woke up right as I landed in France, and lived another 5 weeks which I was blessed to spend by her side in room 714 of the Hospital Montsouris. We had many beautiful heart-to-heart moments together until she fell unconscious again a week before she died. Toward the end, one of her colleagues took me aside and said he had noticed her fingers and toes were turning blue, and this meant she would likely die within the next two or three days. And then he added: “In our work, we have learned that mothers sometimes have a hard time leaving while their children are in the room. So, it would be kind to give her the choice, and let her sleep alone at night from here on.” I was really moved by what he said, and followed his advice. She died at dawn a couple of days later, shortly before my sister and I returned to see her. To this day, I remain profoundly grateful to this man for sparing me any guilt about not having been with her when she took her last breath.
A couple of days ago, as I was finishing this piece, a very touching short video came to my attention. It is titled “The Life of Death” and was created by Marsha Onderstijn, a talented Dutch animator. It beautifully captures what my mother taught me while she was dying, that death can be gentle, and filled with love and caring.
Her name was Nicole, and she died on April 21, 2010, seven years ago.
This Haiku came to me one night I was holding her hand and watching her breathe.
Springtime in Paris.
Trees and flowers are blooming
while she is dying.
We invite you to share a story about yourself or another person, reflecting on the question: “How has gratefulness shifted a moment, an experience, or a lifetime?”
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Dear Tesa, thank-you for sharing this most touching story. The photo of you lying next to your Mom is so beautiful and tender. The story was very helpful to me in learning what to say to people who are seriously ill, dying. I had stayed with my Mom in the hospital the night before she died. She was comatose. That afternoon when she died, my sister and I were in the Emergency Room of the same hospital with my Dad who was ill, so I was not with my Mom when she died, but I know she went peacefully. When my Dad died 9 years later, my brother, sister and I were with him when he died and I was glad we were there. My Mom is dead 22 years and my Dad 13 years, but writing this I can remember it like it was yesterday. Thank-you for letting me share with you. Bless you, dear Tesa.
Thank you Sheila for taking the time to write this lovely comment, which I somehow did not see until today. My sister took that photo with my mother, and it really captures the sweetness of our last few days together… every moment so precious. I am glad you also had an opportunity to accompany your parents to the end of their life.
There is so much wisdom in your story, Tesa.
My mother died two days after my daughter’s wedding 22 years ago. I felt she was holding on and often heard her words to me, never actually spoken, oh Missy, I never would have done this to you at such a beautiful time when Chrissy is getting married.
The day after the wedding, my husband and I took some wedding cake and flowers to her in the nursing home. She had a soft smile, no words. The next day, I went to see her and she was not awake and her breathing was different. I sat for awhile. Then the fire alarm went off. As I walked down the hall to the nurses, the heavy fire doors closed behind me. Those who had cared for her, were waiting to see whether it was a false alarm. They were in a loose circle and I joined them. False alarm. I looked at each of them and thanked them and said I was going to leave and didn’t think I would be back. An hour later, I received the call that she had slipped away.For years, I felt uncomfortable, not guilty but the feeling lingered. Years later, a professional told me that it was not uncommon for a parent to want a beloved child to not be there at the moment of death. So your experience and that of others who respond to that part of your story, have had similar experiences.
I think it is so important that others hear that. For me, learning that helped to soften my mourning.
Thank you Tesa for your kind words and sharing another waiting and how you used modern technology to bridge the goodbye.
As palliative care is becoming more open and ways to “listen” to what the dying want and the loved ones too, Gratefulness is offering an opportunity to have these conversations.
Thank you for sharing your story, Missy. It always touches me deeply when I hear of people waiting for a particular person or event before they let go… On the night before my mother passed, her best friend asked me if it was possible she might still be waiting for someone to say good bye. She had been in a coma for 7 days by then, but still hanging on. The only person my sister and I could think of was someone who had been a great love of her life more than 20 years back. The two of them had stayed in touch over the years, but he had been unable to come say good bye because he was living pretty far away and was not in good health. We arranged for a Skype call with him that evening, right before leaving her for the night. She could not speak anymore, but we trusted she could still hear. He spoke very tender words to her, acknowledging their sweetest memories. She died at dawn the next morning. I can’t help thinking she waited for him, the same way your mother waited for your daughter’s wedding. And I agree with you that it’s really important to understand that not everyone wants someone (particularly their child) holding their hand or sitting by their side when they die. But some do, of course. My grand-mother asked for my mother as she felt herself near her last breath, and she died in her arms. That was a beautiful death too. We are all so different, and it’s really important to support or simply allow someone to leave their own way.
Thank you for your courage and response to your mother. Thank you for telling me about this lovely woman.
Your story quickly brought to mind the losing of my father to a neuro disease and my mother to cardiovascular disease.
I was with both parents through the illnesses and near the end.
My mother had become septic and was not expected to last the night. She had rallied and became” better” the next day. But during the night I heard the irregular breathing as a person approaches death…And I wanted her to be relieved of her pain. In half sleep I felt I was back in the house I grew up in and could her as I used to several rooms away from me. Do you have any idea what gift you gave me that I was not present when either parent died? I suffered from guilt not being present as they left their bodies. You have relieved me by telling the story of your mother’s colleague of how parents will often not die when their children are present. I could weep with gratitude for what you wrote.
Dear Alicia, Thank you for sharing this with me. Every time I receive a comment like yours, I think to myself: if she / he had been the only one to read and be impacted by this story, it would have been totally worth writing it. I really mean that. It touches me deeply to know that the story of my mother’s death made a difference to you. And I love knowing that your heart will now feel lighter about the way your parents died.
Thank you for your beautiful sharing, Tesa! Much wisdom contained in this, and I shared your reflection on my Facebook account as well so that others can be blessed as I was. I was especially grateful for this quote “In our work, we have learned that mothers sometimes have a hard time leaving while their children are in the room.” Years ago when my mother was dying, she slipped out of consciousness shortly after I left the bedroom. Nobody was in the bedroom with her, our family was sitting at the dining room table having a meal. I always felt somewhat bad about this, so your story brings healing in this area.
Thank you for you message, Elizabeth, and for spreading the post. I am happy to hear that the excerpt you quoted helped to clear lingering regret. A couple of other people, including my yoga teacher, gave me similar feedback about it.
Thank you, Tesa, for sharing this very beautiful tribute to your mother. It shines with the light of her Being as well as with yours. I know I will return to it again and again for there is so much wisdom woven throughout.
Thank you for your lovely acknowledgment. It gives me joy to know that the story touched you.
What a wonderful tribute! How fortunate that a mother and daughters could share not only life but leave taking. I had seen the animation before and appreciate seeing it again. My sorrow is that my beloved daughter is estranged from me because I do not fit into her religious beliefs so we no longer joyfully share life together and when the time comes to face death we will not participate together.
Dear Deb, I was deeply touched by your comment and wanted to add an important p.s. to what I wrote above to give a bit more context to the story, and keep things real. While my mother and I had a beautifully deep-hearted and intimate ending to our relationship, we were not always close like this. We too went through phases of estrangement, including a 15 year window of time during which I saw her very little, although for different reasons than what is keeping your daughter and you apart. It was not until she was diagnosed with a terminal illness that I managed to get past what had prompted me to put the Atlantic ocean between us. No one knows in advance what will happen to our heart when we realize we will lose someone who has been a significant part of our life. Sometimes the proximity of death gives us entirely new eyes. Realizing that my mother’s days were counted opened my heart in many of the places it had previously closed to her. The things that had been sources of conflicts suddenly stopped feeling so important in light of how little time we had left. Something like that could perhaps happen to your daughter one day, and maybe before you come to the point of facing death. Acceptance of a painful situation and giving up on a possibility are two very different things, and I wish you the strength to keep them distinct. Perhaps life will some day surprise you and bring renewed life and love in the painful places where you grieved deeply the loss of your dreams. Wishing you courage and emotional resilience in your difficult journey as a mother.
Thank you for your kind reply, Tesa. I know our story is not over and who knows what the future will bring? It is difficult for me not to think “what a waste!” We could be enjoying so much together, I could get to know my grandchildren and they me.
Best of success as you continue to create your life thru all you are doing! Cheers!
Yes, that’s so understandable. Everybody loses. I am really sorry that you are missing out on your grand-children too, and that they are missing out on you. We are all wired for connection and being cut off from those we love is a deeply painful experience. I will be thinking of you. And thank you for your good wishes.