Warning: This article is about death and dying. If you or your loved one are dealing with death and dying, this article might be triggoring or I hope that it may bring you a sense comfort. While I can’t predict how this article will affect you, I can tell you that it has difficult topics that may be upsetting.
My Mum and I were dying at the same time. Sadly, she lost her battle. This blog is about what’s it like to know your dying, while at the same time watching a loved one dying. It’s also about the Chinese custom of not telling a loved one they are dying to spare them the profound sadness and burden of comforting others in the face of the inevitable.
As a person who has spent years contemplating an early death by either cancer or heart failure, I was blown away by the Chinese practice in some families of keeping a terminal illness away from the patient to spare them the burden of carrying this responsibility. There is also the notion that perhaps their life doesn’t just belong to them, but also to their family, creating a shared responsibility.
The movie The Farewell, acted by the talented Awkwafina, attempts to capture the emotions surrounding this complex moral dilemma. Does our life also belong to others? Does this good lie spare the patient or you the burden? Is a good lie ok if it is to protect the dying?
The film follows a Chinese family who, when they discover their beloved Grandmother has only a short while left to live, decide to keep her in the dark and schedule an impromptu wedding to gather before she passes. Billi, feeling like a fish out of water in her home country, struggles with the family’s decision to hide the truth from her grandmother. Rotten Tomatoes (October 2nd, 2019)
This blog doesn’t attempt to review the movie, because I have terrible comprehension and I’ll leave it to the professionals. In general I enjoyed the movie, but it left me wanting more; I wanted it to peel more onions layers away and dig deep into the moral and philosophical nature of our existence–but a box office hit this does not make, even for an indie movie.
At one point in the film, the main character is upset that the family and even the Chinese doctor are purposely withholding the Grandmother’s cancer diagnosis and that she has weeks or months to live. Raised in America, Billi takes the doctor to task to say he is lying to his patient by not telling her she’s dying. The doctor replies, “It’s a good lie. Most families in China would not tell her.” The family wants to spare her the burden of telling people she is dying and living with the heaviness of imminent death. In the US, laws prevent a doctor from withholding such a diagnosis from a patient.
The same month that I was told I needed a heart transplant, my Mum was diagnosed with terminal ovarian cancer, became septic on life support and nearly died. We were both dying at the same time. I was in disbelief. A week prior my Mum seemed healthy. We thought at first she had food poisoning and could never have predicted she would be diagnosed with Stage 4, terminal ovarian Cancer.
I was tearful knowing that I was dying, but I was despondent to know my Mum was too. To get listed on the heart transplant list, the criteria is that you will die without the transplant. My Congestive Heart Failure was killing me. Doctor’s didn’t tell me that I had a certain amount of time left, because when I asked these questions they often put the question back on me, saying the human body is mysterious and predicting death is unknown. Basically, that’s what you tell someone that would qualify for hospice, when some is dying.
Contrastingly, my Mum was bluntly told she had six months or less to live. She would battle it out for 2 years to the week of her diagnosis. It was difficult to watch her decline, likewise she too had difficulty watching me decline. We were a pathetic pair, really.
For weeks and months, I was in disbelief with how quickly my family’s existence was turned upside down. I kept thinking this irrational thought that my twin sister would be alone in the world (I still can’t shake this thought). Suddenly my life and the lives of my family member’s took on this desperate feeling. Maybe this is what it’s like to experience a natural disaster with your family: your life hangs in the balance, but so too does your family. It makes me feel vulnerable. A 1,000 horses couldn’t drag me away from my mother. I just wanted to be near her and my family.
Thinking about dying and then your body physically declining, turns the experience from a distance existential crisis to feelings of terror, resignation, betrayal, peace, anger and depression. These emotions came at me like a wave and then it was just overwhelming or sad, so I’d shut down and put it out of my mind or sleep after a long crying jag from the all the stress. My body was weak and stress just debilitated me, leading me so fatigued that all I could was watch life go by. I was too tired to participate in life.
Physically when I was dying, I felt like my internal life force was leaving me…that my light was fading. I was beyond tired. Lifting my legs to walk wore me out and forget climbing the stairs; I felt like I was walking through mud and all I wanted to do was sleep or sit on the sofa.
Watching my mother decline, getting thin and weak made me anxious and agitated at times. When she walked through the door, I studied her bony frame to judge the wasting I was witnessing, knowing that she couldn’t do this for very long. I wanted to feed her high calorie magical food to fix everything. I had this intense desire to want to control the uncontrollable. (Oh hello, co-dependency there you are, my old friend).
At first, I felt like I was slowly dying and that I probably had about five years of life force left in me. I was in my mid-30s and no longer working. I was getting so tired and as the months passed, my physical strength and endurance declined dramatically. Then by age 39, in the months prior to my transplant I started to get much weaker, much faster. I could not have possibly envisioned the level of betrayal my body would do to me and likewise, to see my Mum’s body become bones.
I would joke that I needed a nap to recover from my nap. I was just so tired every moment I was awake. I also watched my mother slip into more fatigue. Our shared hobby was napping and watching her favorite crime tv shows.
I feel like I know what it is like to dance with death and it has different tempos both slow and agonizing, moving to fast and spinning out of control with anxiety.
I gave up on my personal hygiene because I was just too tired and depressed. I started showering every other day or two, only to need a nap to recover from all the effort. It didn’t matter really because I couldn’t leave the house much anyway. I needed a driver and Caregiver to help me negotiate my doctor’s appointments. I had to use an electric cart at the big box stores during the times I left the house. When an electric cart died on me in the back of the store, I cried wondering how I was going to make it to the car. I cried a lot. I was grieving my own death and my mother’s terminal diagnosis.
My Mum had almost the same issues with her decline in functioning, but she put on a brave face and I only walked in on her crying once. It was the only time she expressed fear of dying to me, all the other times her battle cry was, “I’m gonna beat this….”
I was grateful for her optimism around me, perhaps she sensed that I just couldn’t take it. I think she saved her terrifying moments for my Dad and sister, or least I hope she confided in them. Maybe I’m still fragile to know about her fears of dying because I have my own fears, even still.
When I was dying, I could no longer envision my future. It’s probably one of the few times in my life that I really lived in the here & now. I don’t have regrets and so I didn’t contemplate the path not taken in my life. But there was still things I wanted to do and that seemed normal, but I didn’t lament (too much) about what I wasn’t going to be able to do. Mostly, I became depressed by my body failing me and profoundly sad at the thought of leaving my friends and family, while watching this happen to my mother at the same time. It was surreal at times.
I couldn’t see the road ahead me, it was like being in a fog and I only dealt with the immediate hazards in front of me, everything else fell away without much thought. Since my heart transplant, I still think about death because a heart doesn’t last forever. In fact, talking about how long a transplanted heart last is too upsetting for me to even write about (you people know how to Google scary crap, have at it). I will say that death is not as close to me, like it was prior to transplant and I also feel so much better (I have a much more energy) and I’m back to being more distant and philosophical about death. Thankfully, I can breathe and I no longer feel the physical symptoms of dying.
I suppose if I could go back in time and cast a magical spell, I don’t think I would want to know that I was imminently dying because ignorance is bliss. Of course with my body failing, this would be impossible to pull off. Most of all, I would want to spare my Mum the burden of knowing that she was dying. I would want to bring her comfort and peace. During a tearful moment, we both said that we wanted to take the other’s pain away, to spare each other.
If I thought for one second that I could tell my Mum a good lie and spare her the anxiety of her own death, then I would. But here’s the thing, I did have that chance and I blew it. There’s was no hiding the fact that she was doing chemo for metastatic cancer, but as her death closed in on her, perhaps lying would have helped her.
My Mum’s appetite had been declining for months, she got too thin and weak. So my Mum was started on artificial nutrition, which she hated. Eventually the artificial nutrition started feeding her cancer and if it wasn’t stopped it would only cause her more pain from a faster growing cancer. I felt hopeless.
My family surrounded my Mum’s bed about 10 days prior to her death to tell her it was time to withdraw the artificial nutrition. Like Ernest Hemingway always living in the light of truth, she asked “Am I going to die?” and I burst into tears and said, “Yes.” I was the only one that spoke the grim reality, my Dad and sister, respectfully fell into silence, wanting to lovingly take the burden of death from her. It was one of the most brutal moments in my life.
If I could go back to that moment, I would’ve followed her lead, staying silent, holding her hand and just being with her in that defeating moment of despair. You know, all the skills I was trained to do as a therapist, but what I failed to do as a daughter.
Here’s the conundrum, I was also taught by mother to be honest and we didn’t lie (well most of the time), so I’d like to think she’d both understand and forgive me for telling her the truth about her impending death. I have to believe this or else I will live with a heavy burden.
It’s been 3 years since my heart transplant and 2 years since I’ve lost my Mum. Sometimes, I feel survivor’s guilt because we started the dance with death together and my dance card still has dances available. It seems unfair at times. But I would also want to spare my Mum watching her child die. It’s a no-win situation really.
I’m being optimistic, a trait I also learned from my Mum. I’m moving past the fog and overall my grief feels more manageable. Last year, I don’t think I could’ve written this brutal blog, so this is progress. I still can her my Mum’s voice in my head telling me, “honey, it’ll be ok.” Now, I just have to believe that it will be ok.
Thank you for taking time to read my blog, especially about a scary topic like death. If you want to drop me a line to chat (or ask me questions), even after months or years after this post is published, I’ll listen. Promise.