This upcoming Sunday is Mother’s Day in the US. It’s not a great day for me.
It’s somewhat better now that I’m a mother; my husband always does something special for it (motorcycle lessons one year, a really nice pair of cowboy boots another) and my son scrawls some sort of affectionate message. I reach out to the mothers I know to note the day, as it’s an extreme job. But I don’t reach out to my mother on it, for the simple reason that she’s dead.
This whole month is ALS Awareness Month in the US, which doesn’t have nearly as many card choices at Hallmark as Mother’s Day does. I’m not sure why they picked May, but this month has always been ALS Awareness Month for me – my mother died of ALS when I was 15, and every Mother’s Day since has been a reminder that I am defective, weird, not normal. Losing a mother before you are both old is so unusual in this day and age that people are embarrassed for you.
I don’t talk about this a lot, and I try to not play the “dead mother” card at all ever, but this year when so many of us are grieving, and adults who have been lucky enough to have their parents around their whole lives (and who want it that way; not every mother is an angel) are grappling with the idea or reality of losing them, I thought I’d share my story. I don’t know that I have any unique wisdom on this topic, but I think it’s important to recognize death, and loss, and important to feel grief.
Mother’s Day is Complicated
I don’t have many good memories of my mom. She was diagnosed with ALS when I was nine, so most of my memories are of her increasingly losing her ability to move or talk. She was sort of like gravity – a defining and ever-present feature of my world that I didn’t really understand, but which was crucial to take into account. Both gravity and my mother gave me bruises from time to time, and I developed some significant trepidation about engaging with either of them. I still have a fear of falling and suffer from vertigo, but my mother has become much more predictable. Obviously.
I don’t mean to say that she was abusive. She believed in corporal punishment and she had certain expectations of what a daughter should be. She possibly had some undiagnosed mental health issues, but it may just have been the damage that 20th Century America did to highly intelligent and talented women. I believe she loved me, but I’ve never thought she liked me.
I am not the kind of person that submits meekly to dominance, so pretty much all I remember from before she got sick is the emotional resonance of our constant fighting. She was not the kind of person who demonstrated much affection, and other than letting me sit on her lap while I was learning to read, our only physical interaction was when she spanked me.
Until she lost the ability to walk.
Awareness of ALS
ALS progresses differently in different people, but usually your hands or feet go first, then later your head and chest. The first indication we had was my mother falling off her bike. I was 9, and she and I had biked to a friend’s house. My father met us there and he took me home in the pickup, but my mom wanted to bike home. I became very agitated and made him turn around and go back to check on her; she was lying in the middle of the street. This was before helmets; apparently her legs spasmed and she fell and cracked her head open. She was unconscious and there was so much blood. (That’s when I learned head wounds bleed a lot, which has come in handy since.) My father had me use his shirt to apply pressure to the back of her head, very gently moving it in case there was spinal damage, and he ran to the friend’s house to call an ambulance. I was not allowed to go with her in the ambulance.
As you may recall from science class, we have two main types of nerves: sensory and motor. ALS kills the motor nerves but leaves the sensory nerves, so you can feel everything as you slowly become locked inside your own body. My mother could feel her muscles atrophying as her nerves died, describing it like the pins-and-needles feeling you get after your leg or arm falls asleep. She went from needing a cane, to using a walker, to using a walker with me supporting her, to a motorized Amigo wheelchair, to that same wheelchair but with me driving, then finally to a bed. At the time there was no treatment and much less medical technology to help. There’s still no cure.
People with ALS feel pain, but can’t move. They feel hunger and thirst, but can’t eat or drink. They can tell they need to use the bathroom but can’t do anything about it. Their brains are fully engaged and active, but they can’t turn pages or change the channel or do crafts. They feel lonely but can’t talk. This is the nightmare awareness of ALS.
There may be some people in the world who deserve such a living hell, but my mother was not one of them.
Losing my mother
I became my mother’s primary caregiver. My father hired a series of helpers to stay with her while he was at work and I was at school, but she cycled through them pretty fast. Either they didn’t like her (she was a strong flavor) or she didn’t like them (she didn’t like many people) or there was another issue (like the guy who spent all day jacking off to gay porn mags rather than taking care of her and yes I had to deal with that when I was 11).
Finally one stuck, and I will owe her forever…but from 5th grade on, my day started with making sure my mom could use the bathroom and had food. Then I got myself to school and back, and from the time I came home I was on call. My social life got smaller and smaller as I got weirder and weirder. By 8th grade I wasn’t sleeping anymore, because I needed to be able to hear my mom during the night, so that I could go turn her over, or give her a drink, or lift her out of bed and get her into the wheelchair and into the bathroom, then lift her onto the toilet and hold her upright while she relieved herself, then get her cleaned up and back into bed. Suddenly our relationship was all about physical contact.
That horror movie trope where the young heroine is summoned at all hours of the day and night by the old lady pounding on the wall with her cane? That was my childhood and adolescence.
My mother was a proud woman and I could feel her spirit dying a little more every time she had to rely on someone else for help. This is part of why I was her primary caretaker – it was less embarrassing for her than having my father do it. She needed him to still see her as attractive. The other reason was that I was the only one who could understand her as her voice started to go, and when she could only communicate by moving her eyes.
The day she died, I knew she was going to die because of her eyes. She was fully immobile and bedridden, and in an “assisted living” facility with access to a ventilator. I went to see her in the morning before driving with my father to her mother’s house, 4 hours away. I held her hand, now wasted away to nothing, looked into her eyes, and knew…and said goodbye. She knew that I knew.
We got the call at my grandmother’s house 10 hours later, from my sister. My grandmother, my mother’s mother, died a month later of a broken heart. No one should have to survive their children, and my heart hurts every Mother’s Day for my friends who have lost children, at any age.
I knew what the phone call was immediately, of course. Later in life I would stop associating late night phone calls with “death in the family,” but that was only after most of my family was already dead, and after years of duty calls from the embassy to go deal with crazy, drunk, or jailed Americans in whatever country we were in (or sometimes the hat trick of all three!).
But at the time, when the phone woke us up, I debated whether to even get out of bed or not. After so many years of grieving for my mother and my family every single day, of sobbing through unanswered prayers, of severing my ties with organized religion because it was doing more harm than good, I was already through the stages of grief and into acceptance. But I got up to be with my father and grandmother and help them in their grief. For me, it was more a relief than anything else. The thing that we’d known was coming for years had happened. She was no longer suffering. Her death had always been inevitable, and it had evited. Acceptance.
Reader, I was not done with grieving. My mother’s death just shifted everything into a new and different phase of grief, one I didn’t yet recognize. That night, sitting in my grandmother’s armchair while the adults talked, is pretty much the last thing I remember for about two months. I have images of the funeral and the reception and people telling me they were sorry for my loss. I wanted to respond “What loss? I lost my mother six years ago, where were you then? I lost my childhood, where’s the funeral for that?” Instead, I shifted my feeling of being glad that her torment was over into words, and said “Thank you” and “She’s in a better place” over and over. Now, having been to many funerals in several countries, I have some sympathy for them; what can you really say?
But basically there are two months of my life that are missing. I remember the feeling of coming back to myself. I was sitting on our roof in the afternoon heat and realized that I’d been planning the most effective and least messy way of killing myself. Some part of me was not on board with this plan and woke me up…but the feeling of being lost and alone didn’t go away. I no longer had a purpose in life. The single defining characteristic of every moment of every day for as long as could remember was gone. I didn’t want to die, but I didn’t know how to live.
Obviously I did not kill myself, or even go farther than climbing down off the roof and asking my father for help. He came out of his own grief to help me, and together we built a new normal. My friends didn’t know what I was going through, but were a huge support anyway, and I could be more present for them as well. Three years later I moved as far away as I could and began my real life, and it has been amazing and I wouldn’t have missed it for the world…but over the course of that life I’ve gotten very familiar with grief in all its stages and flavors. My father died, of cancer, in 2001. All my grandparents and my aunt preceded him. I’ve lost friends to accidents and disease, in high school and this year.
Grief in Today’s World
The whole experience of grieving has changed, though, and I don’t think for the better. Some years ago, one of my friends (who has since passed away from cancer) joked that the new stages of grief are Denial, Anger, Bargaining, Google, Acceptance. The amount of available information, the constant barrage of it, and the exponential growth of technology have shifted us from believing that death is inevitable and possibly right around the corner to believing that death is negotiable, and if we just get the right doctor or pay for enough medical care, we won’t have to die or lose loved ones.
And we are kind of right. Even in my lifetime, global life expectancy is up and it’s unusual that anyone in a WEIRD country lose a loved one early.
In their struggle to extend life, humans have been remarkably successful. Over the last two centuries, average life expectancy has jumped from under 40 years to 72 in the entire world, and to more than 80 in some developed countries. Children in particular have succeeded in escaping death’s clutches. Until the 20th century, at least a third of children never reached adulthood. Youngsters routinely succumbed to childhood diseases such as dysentery, measles and smallpox. In 17th-century England, about 150 out of every 1,000 newborns died during their first year, and only about 700 made it to age 15. Today, only five out of 1,000 English babies die during their first year, and 993 get to celebrate their 15th birthday. In the world as a whole, child mortality is down to less than 5%.Yuval Noah Harari, writing in The Guardian
In fact, disease is so rare that poorly educated, selfish parents are refusing to get their children vaccinated. They are such strangers to hardship that they can’t imagine the ravages of smallpox, polio, mumps. We have lost our acquaintance with death, and with it, some of our humanity.
I believe that’s why so many nations have adopted populism, including wealthy nations like the US and UK…we think there’s some version in which this life has a happy ending, and we want to make sure we get it. Liberal or conservative, we want a strong personality who will tuck us in at night and tell us everything is going to be okay. We believe that we deserve to be protected from feeling grief. We don’t, and we shouldn’t. Grief is acknowledging value and recognizing consequences. If we can’t or won’t grieve, we won’t change or grow or be able to experience joy.
It’s been hard for me to listen to my adult friends panic about how their elderly parents might die from Covid-19. I don’t have parents to lose to this, and my few remaining older relatives have already started having the things that signal the end of life – cancer, heart problems, mental decline. I don’t want to lose them, to Covid-19 or anything else, but I also know I will. It will hurt when my son’s grandfather passes away, and my son will be devastated, but that means we don’t take him for granted now. I am deeply appreciative that my son had the experience of having a grandfather. I hope that people know how lucky they are to have parents to lose.
I dragged my son to see the King Tut exhibit at the Saatchi Gallery in London last year. (I had desperately wanted to see it when it toured the States in the 1970s, but we were too poor and too rural, so this was a lifelong dream for me.) The exhibit opened with the Egyptian belief that an individual has two deaths – once when the body dies, but the second and more important is when no one alive remembers that person. (This is why subsequent leaders would have predecessor’s names and images chipped away.) Their point was that, by this logic, the young King Tut won’t fully die, as he’s so well known.
Later, walking through SoHo, my son brought up the concept in the way he does when he’s internalized something and it’s troubling him. He was sobered by the fact that some day, there would be no one alive who remembered him or cared, and the tiny blip of his life would be like he had never existed. He said it made life feel pointless.
If you work to avoid grief, you render the other person’s life pointless.
Grief is hard. It’s painful. It renders you weak, and confused, and it can throw everything about your life and your choices into question. It can make you ugly cry. It can knock you out of your life for two months, or more…and yet, trying to not feel it is about the most selfish act a person can make. Grief is the partner of love, the foundation of respect, and the celebration for the time we are given.
Darkness is necessary for light
Now, if ever, is a time for grief. It might be more comfortable to stay inside, refreshing social media in the hope that recreational anger or ephemeral memes will block out or stave off the grief. If you can just get a little more information, surely you can exert some control or understanding of a complex and random universe. Denial, Anger, Bargaining, Google…but that’s not real. Accept and experience your grief. Go into that darkness, so that you can know what you truly value, and act accordingly. Go alone; this is not performative. I am one acquainted with the night, and so I do not fear it.
We used to all be acquainted with the night, and were stronger for it.
Go ahead and grieve. Reach out to those who are grieving; even if they don’t talk about it, you are helping them (and I mean really reach out, not IMing them or hearting their tweets). It’s okay to be hurting now; in fact, it’s ultimately human. Honor the lives of those you love by feeling something.
The show Bosch has a recurring theme that “closure is a myth.” I believe this is true. Whether you lose someone to a car accident or a coronoavirus, you never really get “closure.” You will still miss them, years later, at weird times. When you die, your friends and family will grieve, and will miss you, at weird times, for the rest of their lives.
As a society, we’ve gotten too far from death. We’ve pushed it so far away that we can believe it doesn’t happen. I don’t think this is healthy or good. It’s certainly made us weaker than our forebears. I hope that we can learn to grieve again, together and alone. I hope we have less fear of death because we know we lived well and will be remembered well. I hope we remember that sometimes bad shit just happens, and when it does, we need to be there for each other.
I hope we become strong again, from our acquaintance with the night.