families.
I meant to tell all of you that a few weeks ago, when I read Asher and Elijah the Danish book about dying? Asher vociferously was against it. Not just that he did not like that book. He was afraid of the actual book, which reminded me of fears I had about several actual books when I was growing up. The book itself, because of the contents. He asked me to take that book, with its open and loving story about death, and to take it out of our house that very night and to give it to our neighbor, who has a little girl their age. Maybe another child might want the book, he said, but he could not sleep with it our house. (I did not give it to our neighbor that night, but I did take it away and I told Ash I would take it out of the house.)
It was all I could do not to weep at the great fear which sprang up in Asher but I was sure my crying would have made things even worse. Asher would turn to Eli when I left their room and say, in his own way, boy, when mom started crying, I KNEW I was on to something. Death is really terrifying.
So much for my natural, Danish-inspired, kumbayah approach to talking to them about dying. I wanted to lie so badly at that moment. I wanted to tell them I'm not afraid. That everything will be okay. That we don't even need to talk about death, because nothing like that is even on the remote horizon in their lives.
I didn't lie, but I did get very quiet. We read one of our tried and true books and I tried to make lightness in the room, and I tucked them in and kissed them and turned some music on.
And I went out in the hall and was folding laundry and waiting to see if I would hear Asher cry out for me, but he was completely quiet. And yet I knew he was awake in there, and that Elijah had fallen asleep, leaving Asher with his fears.
So I went back in and he told me he was scared that Death was going to come to the house that very night. So I crawled in bed with him and held his scared little self until he fell asleep in my arms. And the whole thing was so damn sad. Because I'm scared too, Asher, and I really don't want to leave you. Not yet.
I had my scans yesterday. I won't find out the results until the end of the week. I wasn't scared of the book this time, by which I mean, I didn't have much claustrophobia inside the machine this time. MGH has a new CT machine and it was more open. The ceiling panel above the scanner has this weird, beautiful scene of flowers floating high in a bright blue summer sky and then there is also a mysterious moon in the sky. Is it morning or night in this picture? Is this heaven, where flowers and sunshine and almost full moons happen at one and the same time without it being noteworthy? I did find the new machine easier and the picture was comforting, like one of those seventeenth century still life paintings with masses of flowers and an outlay of delicious food for seventeenth century eaters, like a roast, and a flurry of grapes, and then the one odd man out skull, tucked in amongst the fineries to make sure we remember. You, too, you wealthy patron of the arts, will die. I'm sure Asher would order such a painting to our neighbor's house right away.
Someone advised me to listen to John O'Donohue--you might already be on to him. He was a priest, for a time, and a philosopher, and a poet, and even a consultant on creativity in the workplace. He is richly word driven, and a delight. (you could hear him speak on an old podcast of On Being, the NPR show with Krista Tippett.) Anyhow, John O'Donohue talks about those days when you are just managing your own life, wandering through your day, worrying about whatever it is that you have to worry about that day and then you get a phone call, and someone has died, or something terrible has happened, and suddenly your entire present has been utterly transposed and everything that was of a concern seconds ago is no longer. I think those days have tremendous power, and are remarkable teachers for helping us understand the present is all we have, but I paradoxically seem to wish to spare my children such a plunge: I suppose that is why I tried to read Asher a book about dying when he was hoping for a book about superheroes. And maybe there is no protecting against those days, and that's why Asher refused the lesson about loss, and prefers to stay in a six-year-old's world of no thank you, that sounds awful.
John O'Donohue wrote that "[A] lot of suffering is just getting rid of dross in yourself, and lingering and hanging in the darkness is often--I say this against myself--a failure of imagination, to imagine the door into the light."
The door into the light. Some of my family, just as some of your family I imagine, either now of someday, are experiencing particularly difficult passages emotionally and mentally at this moment. When I see people I love wrestling with depression and with anxiety--and I mean those terms in the absolute clinical sense--the concept of a door into the light is absolutely useless. I want to help, to reach into or through the permeable darkness, as the poet Anita Barrows described her mother's depression, and pull them through. But I know that chatter about spring flowers and the benefits of a nice, brisk walk is useless, and all my talk about just how lovely, and beautiful and important each of them is to me doesn't change the record. Pharmaceuticals often line a path back, back to a more regular kind of living, where the instinct isn't to step back away from the light of day into the dark, stillness of the exhaustion of depression. I have nothing bad to say about pharmaceuticals--there is plenty of bad news out there about them and I'm glad others are speaking so well on that front--for me, they have allowed me to live out this entire almost year since I was diagnosed with cancer, and they allow my loved ones to have lives where meaningful spiritual connection with each other is possible.
I often am most drawn to people who have walked through the fire of depression or anxiety because they know something about difficulty and journeys and I want to know about those things too.
I worry that having a mental health diagnosis--whether it is depression, or bipolar, or PTSD, or anxiety, or eating disorder not otherwise specified--makes the people I love in my family feel like they do not belong, in my family. That they don't fit in, because everyone else is strong, or farther along a path, or happy, or married, or easily thin, or brilliant, or successful. This idea that we each belong to a family, and yet so often we talk about how we don't fit in with the rest of our families. And particularly when it comes to mental health; the family is defined as singularly mentally healthy and robust, and if we are not, we don't fit in. The irony of course is that so many of us, in our families, also have mental health illnesses, and sometimes we don't talk about that, and sometimes, we don't know. The family needs to be defined in a way that includes all of us. We all have that relative, possibly an older relative, who we think is depressed, just depressed, and if only he would get help, but there seems to be no way to say anything to him, we are just tongue-tied because we don't want to insult him. So we stay quiet. Which just goes to show you that we aren't over the stigma which attaches to mental health issues, because we would be the first in line to tell that person gee, you're drinking so much water? Do you think you should talk to your doctor about diabetes?
I sometimes wonder if we all, the all of us, go around thinking that everyone else in our family belongs except for us. We don't belong because we are ________. Not athletic and everyone else is. Didn't get a master's degree and everyone else did. Got divorced and no one else did. Do families all sort of posit a collective ideal based on the accomplishments and personalities of everyone in the family, which then collectively means that everyone feels a little left out? I digress.
I just am sorrowful about the suffering of several of my loved ones right now and I need to do a better job of ensuring that one thing none of my particular people think is that their difference, their tired and battered minds, makes them less in the family than someone who is, at the moment, ticking along. Our definition of family has to be honest about the dark places so many of us journey to and often, hopefully, through, so that family is a place of sanctuary, not imaginary judgement, but as importantly, we allow our definition, our very idea of what our family is, to contain all of our experiences. By way of one more example, I grew up saying that we had no history of cancer in our family. And yet, my grandmother and her mother both died of lung cancer. We dismissed those cancers because we thought we knew why--well each of them smoked, or was near smokers--so that lung cancer doesn't count, when to this moment, science is still not entirely sure why each of us does or does not get cancer, and there may very well be a genetic piece. Certainly not all smokers get lung cancer, and, as you know, not everyone who has lung cancer, smoked. But my real point is isn't is strange that rather than say we have a family prone to mental health disease and cancer, I thought, I am the exception.
This weekend, Kyle and I went to the ocean for a day or two to remember what we love about each other and it was necessary and wonderful. We walked near the ocean, and poked around in shops, trying on silly hats, and had one atrocious meal and one absolutely delicious, perfect down to the two gorgeous sugar cubes wrapped in brown paper for the coffee.
Anyhow, that John O'Donohue quote--that we linger in the darkness because of a failure of our imagination to conjure up the door into the light. I guess I don't think that's the right idea when it comes to depression. It isn't possible to conjure up a door into the light, to look for God, when truly lost in depression. I think its our job, then, as family and dear friends, to bear witness to the suffering, to take the brisk walks next to our beloved family members, or to sit quietly with them, or to send them small signals from the other side--I'm here, you are loved, you will emerge.
O'Donohue instead I venture to think, was thinking of the darknesses of our own making, when we wander as if lost because we will not give up a way of thinking or a course of action which is doomed. I really feel it is my work now to continuously look for doors into the light from this space of serious illness. I'm not depressed, although I am often sad, and I'm not anxious, although I am often absolutely terrified of what is to come. I risk losing sight of the beautiful, the beloved whenever I get anywhere close to self-pity, or bitter recriminatory thoughts like why me. It's quite easy to spin away minutes and hours fretting about what might have been if only.
Just this morning I was talking to Roz on the phone about the weeks running up to my diagnosis, when I was exhausted and in pain and just kept plodding through my work days and nights, and she was bearing worried witness to it all. She reminded me that several weeks before I was finally diagnosed she had terrible chest pain and I went with her, from work, to the E.R. where they discovered she had developed a blood clot after a skiing accident and it had traveled to her lung. We laughed a little about our conversation that morning in the hall at work, where we were struggling to see that she needed to go to the ER immediately, and we needed to just put everything else down, all the phone calls, and the meetings, and just the demands, and give over to the crisis in her body. She was fine, but only because we went. She needed medication (again, thank you modern medicine) and she took blood thinner for a time, and then she was just fine. But Roz and I laughed at the clumsy way we managed the crisis, the kvetching about what was the fastest way to the ER, and should we uber or take a taxi or take a car out of the parking lot, when what we needed to do was just go. Of course, we didn't know that my cancer had already jumped the shark, and had left my lungs to travel to my bones. We saved that for another day, when Roz took me to the ER because I was so anemic that the doctors called my bluff.
Roz called this morning because she is working at finding the best way to send food to my family. She knows that although I am better, and I walk in the bog everyday, and I write and work a bit, that I'm not the same person I was before, and that the regular meals she and my dear friends at work send once a week allows me more energy to do those walks and this writing. She just keeps working at the best way to do this--should the food come delivered from Wegmans? should she find a chef in Carlisle, an imaginary home cook who would make me exactly what I like? The answer is not so important--what I love is that she is trying so hard to do this lovely thing for me just right. I'm so grateful to this group of women, sending food from their computers at work--it's a modern way to deliver a casserole, a working woman's solution--what an honor it is to be thought of here, almost a year out.
We had a cathartic, restorative support group meeting today--it was so for me, and I suspect it was so for others. We are starting to know one another and the love is creaky and new but astonishingly emergent for me; it's another kind of family, defined exclusively by the trauma of cancer. I didn't know I needed to cry until I started to speak, and almost immediately my voice began to break. We carry these things around, close to the vest, and then when someone asks if we can set our burden down for a moment, just a moment, we do, and they take it up and hold it for us, just for that moment. At the end, the leader had us shut our eyes and she read a beautiful incantation over us, a blessing, and the tears leaked from my eyes although my breathing had stilled as I breathed in my square, as I have been taught to do: breathe in, hold, breathe out, hold. But when the man next to me, the man whose skin cancer leapt the border and is now in his brain, the man who loves his train ride in and out of the city for his phase one clinical trial (and you know, or should know, just who is enrolled in a phase one trial), patted my back, letting me know I was being seen with the kind, kind touch of his hand, I could not stop crying. I have cancer, I have cancer--I tried not to panic, I could not help but mourn it again. I come from a family where people have depression and anxiety, bipolar disease and eating disorders. Cancer runs in my family.
Perhaps what we need to do for our loved ones in need and in crisis is to help them see the doors into the light--by lighting the way with our own good works, and quiet attendance in times of dire need. Maybe I have not yet found a way to comfort my children through my illness and eventual death, but I pray, and I mean that word purposefully and in earnest, that I can make it clear to all of my children, and to Kyle, that they truly belong in this family and that this family is defined by our strengths and our sorrows.
It was all I could do not to weep at the great fear which sprang up in Asher but I was sure my crying would have made things even worse. Asher would turn to Eli when I left their room and say, in his own way, boy, when mom started crying, I KNEW I was on to something. Death is really terrifying.
So much for my natural, Danish-inspired, kumbayah approach to talking to them about dying. I wanted to lie so badly at that moment. I wanted to tell them I'm not afraid. That everything will be okay. That we don't even need to talk about death, because nothing like that is even on the remote horizon in their lives.
I didn't lie, but I did get very quiet. We read one of our tried and true books and I tried to make lightness in the room, and I tucked them in and kissed them and turned some music on.
And I went out in the hall and was folding laundry and waiting to see if I would hear Asher cry out for me, but he was completely quiet. And yet I knew he was awake in there, and that Elijah had fallen asleep, leaving Asher with his fears.
So I went back in and he told me he was scared that Death was going to come to the house that very night. So I crawled in bed with him and held his scared little self until he fell asleep in my arms. And the whole thing was so damn sad. Because I'm scared too, Asher, and I really don't want to leave you. Not yet.
I had my scans yesterday. I won't find out the results until the end of the week. I wasn't scared of the book this time, by which I mean, I didn't have much claustrophobia inside the machine this time. MGH has a new CT machine and it was more open. The ceiling panel above the scanner has this weird, beautiful scene of flowers floating high in a bright blue summer sky and then there is also a mysterious moon in the sky. Is it morning or night in this picture? Is this heaven, where flowers and sunshine and almost full moons happen at one and the same time without it being noteworthy? I did find the new machine easier and the picture was comforting, like one of those seventeenth century still life paintings with masses of flowers and an outlay of delicious food for seventeenth century eaters, like a roast, and a flurry of grapes, and then the one odd man out skull, tucked in amongst the fineries to make sure we remember. You, too, you wealthy patron of the arts, will die. I'm sure Asher would order such a painting to our neighbor's house right away.
Someone advised me to listen to John O'Donohue--you might already be on to him. He was a priest, for a time, and a philosopher, and a poet, and even a consultant on creativity in the workplace. He is richly word driven, and a delight. (you could hear him speak on an old podcast of On Being, the NPR show with Krista Tippett.) Anyhow, John O'Donohue talks about those days when you are just managing your own life, wandering through your day, worrying about whatever it is that you have to worry about that day and then you get a phone call, and someone has died, or something terrible has happened, and suddenly your entire present has been utterly transposed and everything that was of a concern seconds ago is no longer. I think those days have tremendous power, and are remarkable teachers for helping us understand the present is all we have, but I paradoxically seem to wish to spare my children such a plunge: I suppose that is why I tried to read Asher a book about dying when he was hoping for a book about superheroes. And maybe there is no protecting against those days, and that's why Asher refused the lesson about loss, and prefers to stay in a six-year-old's world of no thank you, that sounds awful.
John O'Donohue wrote that "[A] lot of suffering is just getting rid of dross in yourself, and lingering and hanging in the darkness is often--I say this against myself--a failure of imagination, to imagine the door into the light."
The door into the light. Some of my family, just as some of your family I imagine, either now of someday, are experiencing particularly difficult passages emotionally and mentally at this moment. When I see people I love wrestling with depression and with anxiety--and I mean those terms in the absolute clinical sense--the concept of a door into the light is absolutely useless. I want to help, to reach into or through the permeable darkness, as the poet Anita Barrows described her mother's depression, and pull them through. But I know that chatter about spring flowers and the benefits of a nice, brisk walk is useless, and all my talk about just how lovely, and beautiful and important each of them is to me doesn't change the record. Pharmaceuticals often line a path back, back to a more regular kind of living, where the instinct isn't to step back away from the light of day into the dark, stillness of the exhaustion of depression. I have nothing bad to say about pharmaceuticals--there is plenty of bad news out there about them and I'm glad others are speaking so well on that front--for me, they have allowed me to live out this entire almost year since I was diagnosed with cancer, and they allow my loved ones to have lives where meaningful spiritual connection with each other is possible.
I often am most drawn to people who have walked through the fire of depression or anxiety because they know something about difficulty and journeys and I want to know about those things too.
I worry that having a mental health diagnosis--whether it is depression, or bipolar, or PTSD, or anxiety, or eating disorder not otherwise specified--makes the people I love in my family feel like they do not belong, in my family. That they don't fit in, because everyone else is strong, or farther along a path, or happy, or married, or easily thin, or brilliant, or successful. This idea that we each belong to a family, and yet so often we talk about how we don't fit in with the rest of our families. And particularly when it comes to mental health; the family is defined as singularly mentally healthy and robust, and if we are not, we don't fit in. The irony of course is that so many of us, in our families, also have mental health illnesses, and sometimes we don't talk about that, and sometimes, we don't know. The family needs to be defined in a way that includes all of us. We all have that relative, possibly an older relative, who we think is depressed, just depressed, and if only he would get help, but there seems to be no way to say anything to him, we are just tongue-tied because we don't want to insult him. So we stay quiet. Which just goes to show you that we aren't over the stigma which attaches to mental health issues, because we would be the first in line to tell that person gee, you're drinking so much water? Do you think you should talk to your doctor about diabetes?
I sometimes wonder if we all, the all of us, go around thinking that everyone else in our family belongs except for us. We don't belong because we are ________. Not athletic and everyone else is. Didn't get a master's degree and everyone else did. Got divorced and no one else did. Do families all sort of posit a collective ideal based on the accomplishments and personalities of everyone in the family, which then collectively means that everyone feels a little left out? I digress.
I just am sorrowful about the suffering of several of my loved ones right now and I need to do a better job of ensuring that one thing none of my particular people think is that their difference, their tired and battered minds, makes them less in the family than someone who is, at the moment, ticking along. Our definition of family has to be honest about the dark places so many of us journey to and often, hopefully, through, so that family is a place of sanctuary, not imaginary judgement, but as importantly, we allow our definition, our very idea of what our family is, to contain all of our experiences. By way of one more example, I grew up saying that we had no history of cancer in our family. And yet, my grandmother and her mother both died of lung cancer. We dismissed those cancers because we thought we knew why--well each of them smoked, or was near smokers--so that lung cancer doesn't count, when to this moment, science is still not entirely sure why each of us does or does not get cancer, and there may very well be a genetic piece. Certainly not all smokers get lung cancer, and, as you know, not everyone who has lung cancer, smoked. But my real point is isn't is strange that rather than say we have a family prone to mental health disease and cancer, I thought, I am the exception.
This weekend, Kyle and I went to the ocean for a day or two to remember what we love about each other and it was necessary and wonderful. We walked near the ocean, and poked around in shops, trying on silly hats, and had one atrocious meal and one absolutely delicious, perfect down to the two gorgeous sugar cubes wrapped in brown paper for the coffee.
Anyhow, that John O'Donohue quote--that we linger in the darkness because of a failure of our imagination to conjure up the door into the light. I guess I don't think that's the right idea when it comes to depression. It isn't possible to conjure up a door into the light, to look for God, when truly lost in depression. I think its our job, then, as family and dear friends, to bear witness to the suffering, to take the brisk walks next to our beloved family members, or to sit quietly with them, or to send them small signals from the other side--I'm here, you are loved, you will emerge.
O'Donohue instead I venture to think, was thinking of the darknesses of our own making, when we wander as if lost because we will not give up a way of thinking or a course of action which is doomed. I really feel it is my work now to continuously look for doors into the light from this space of serious illness. I'm not depressed, although I am often sad, and I'm not anxious, although I am often absolutely terrified of what is to come. I risk losing sight of the beautiful, the beloved whenever I get anywhere close to self-pity, or bitter recriminatory thoughts like why me. It's quite easy to spin away minutes and hours fretting about what might have been if only.
Just this morning I was talking to Roz on the phone about the weeks running up to my diagnosis, when I was exhausted and in pain and just kept plodding through my work days and nights, and she was bearing worried witness to it all. She reminded me that several weeks before I was finally diagnosed she had terrible chest pain and I went with her, from work, to the E.R. where they discovered she had developed a blood clot after a skiing accident and it had traveled to her lung. We laughed a little about our conversation that morning in the hall at work, where we were struggling to see that she needed to go to the ER immediately, and we needed to just put everything else down, all the phone calls, and the meetings, and just the demands, and give over to the crisis in her body. She was fine, but only because we went. She needed medication (again, thank you modern medicine) and she took blood thinner for a time, and then she was just fine. But Roz and I laughed at the clumsy way we managed the crisis, the kvetching about what was the fastest way to the ER, and should we uber or take a taxi or take a car out of the parking lot, when what we needed to do was just go. Of course, we didn't know that my cancer had already jumped the shark, and had left my lungs to travel to my bones. We saved that for another day, when Roz took me to the ER because I was so anemic that the doctors called my bluff.
Roz called this morning because she is working at finding the best way to send food to my family. She knows that although I am better, and I walk in the bog everyday, and I write and work a bit, that I'm not the same person I was before, and that the regular meals she and my dear friends at work send once a week allows me more energy to do those walks and this writing. She just keeps working at the best way to do this--should the food come delivered from Wegmans? should she find a chef in Carlisle, an imaginary home cook who would make me exactly what I like? The answer is not so important--what I love is that she is trying so hard to do this lovely thing for me just right. I'm so grateful to this group of women, sending food from their computers at work--it's a modern way to deliver a casserole, a working woman's solution--what an honor it is to be thought of here, almost a year out.
We had a cathartic, restorative support group meeting today--it was so for me, and I suspect it was so for others. We are starting to know one another and the love is creaky and new but astonishingly emergent for me; it's another kind of family, defined exclusively by the trauma of cancer. I didn't know I needed to cry until I started to speak, and almost immediately my voice began to break. We carry these things around, close to the vest, and then when someone asks if we can set our burden down for a moment, just a moment, we do, and they take it up and hold it for us, just for that moment. At the end, the leader had us shut our eyes and she read a beautiful incantation over us, a blessing, and the tears leaked from my eyes although my breathing had stilled as I breathed in my square, as I have been taught to do: breathe in, hold, breathe out, hold. But when the man next to me, the man whose skin cancer leapt the border and is now in his brain, the man who loves his train ride in and out of the city for his phase one clinical trial (and you know, or should know, just who is enrolled in a phase one trial), patted my back, letting me know I was being seen with the kind, kind touch of his hand, I could not stop crying. I have cancer, I have cancer--I tried not to panic, I could not help but mourn it again. I come from a family where people have depression and anxiety, bipolar disease and eating disorders. Cancer runs in my family.
Perhaps what we need to do for our loved ones in need and in crisis is to help them see the doors into the light--by lighting the way with our own good works, and quiet attendance in times of dire need. Maybe I have not yet found a way to comfort my children through my illness and eventual death, but I pray, and I mean that word purposefully and in earnest, that I can make it clear to all of my children, and to Kyle, that they truly belong in this family and that this family is defined by our strengths and our sorrows.
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