“Who is your audience?”

When you are in our forties, it’s probably normal to spend your birthday thinking about death. But when I think about death, I really think about death, and then I think about how that’s just not comfortable for most people I know. In fact, thinking about feelings is not very comfortable for most people.

“Who is your audience?” asked my husband and most thoughtful reader recently.  The question made me think. The audience is, of course, you, if you are reading this. My goal is to ask the questions, “What does it mean to live well with illness? What does it mean to live meaningfully and critically with illness?”  So I guess that my audience is the people who care about the answer to these questions.

Plus, I’m a social scientist at heart, so my answers to these questions are grounded in the real things that we do every day, in how they make me feel, and in what they do to our larger politicized worlds. So if you’re still reading this, then you are my audience. You might be like me, someone who is living with and thinking about illness. Or you might be like the many people in my life who are helping someone they love deal with illness and are curious about what that involves. Or maybe you are both, or somewhere in between.

I remember when I was first diagnosed with breast cancer, one of my first questions was, “What is this thing, and how do I live with it?” I could not bear to look at the websites for breast cancer-related organizations and support services because they did not seem to understand who I was. For one thing, they most often featured photographs of breast cancer patients as happy, attractive, white, thin, affluent women who were facing illness with a sense of positivity and uplift. Recently I attended a lecture by a PhD student who had done a critical discourse analysis of several breast cancer survivorship-related sources. She noted how prevalent images were of women with their families, as if these pictures say, “Women are important because they have families.” Not, mind you, because they are people. Maybe this is one of the things that I was responding to.

The few organizations that were different were like a breath of fresh air, and I responded to them immediately. These were organizations like ReThink Breast Cancer and The Underbelly and the Metastatic Breast Cancer Network, organizations that have a stated mission that includes serving women like me with Stage IV breast cancer and who understand the breast cancer experience as one that is complicated, scary, and never-ending. It’s an experience that my brain seems to be always processing, whether I want it to or not.

I also discovered the blogs, memoirs and discussion boards of breast cancer patients. This was a source of bracing honesty, speculation and meaning-making. One of the first blogs that I came across, for better or for worse, was Lisa Bonchek Adams’ account of her own experience with breast cancer, which ended with her death in 2015. Lisa was a great writer and a very woke patient who also had training and experience as a social worker, so her blog reflected the concerns of someone who knew what other patients worried about. In Reading and Writing Cancer, Susan Gubar has written about the influence of Adams and her blog as an important service to patients, so no need to retread here. I have already noted that chronicles like hers have helped me to understand that there are so many ways that this disease can go, and there are so many ways that we can respond to it, and they are all legitimate. The web of stories that we offer up to each other is a way of sharing our experiences and acknowledging the commonalities in our very different predicaments. I am eternally grateful to all of the people who make their experiences public to increase the visibility  of this experience. Thank you, Beth Caldwell, Teva Harrison, Nina Riggs, Ann Silberman, and many anonymous others.

Last winter there was a CBC documentary called Cracking Cancer that followed the work of the POG clinic at UBC. For the documentary, several stage IV cancer patients allowed themselves to be recorded and interviewed at some very vulnerable moments so that members of the public like me could watch them and say, “So this is what it looks like to lives with a very bad cancer diagnosis as it progresses.” My mother watched the documentary at my urging, and said, “Look at how this normalizes the experience!” even though watching it was not easy and was not meant to be easy.

On a personal level, a few of the women I know have shared their own intimate experiences of illness with me. I won’t expose them here, but I just want to say how much it has meant to me when they have shared what it is like to live with a body that is somehow marked as weak or defective or non-obedient. Their experiences are with me always as I think about what it means to live with illness. Within the circle of my acquaintances, I have friends who have led by example as they have coped with chronic conditions that include: arthritis, diabetes, cancer of various types, asthma, COPD, heart disease, IBS, celiac disease, infertility, various complications of pregnancy, and who knows what else.

The need to keep the image of living with illness or disability a dark and shameful secret is one of the things that drives me. After processing my own illness, I came to realize that I have not done anything wrong, that being ill and dying are just part of the human experience, and if I try to keep them secret I’m stigmatizing myself. So I put my own embarassing or unattractive or unstandardized experiences out there to try to widen the circle of what kinds of experiences are out there. I’m hardly the first, but more stories have to be visible to normalize what is actually a very normal experience. Thank you again, Renee Lansley, for introducting me to the work of Rosemarie Garland-Thomson, who draws out connections between feminism and disability. She offers the Misfit as an image of the person whose body does not conform to the rational, male ideal, which, make no mistake about it, is a feminist mission.

And, of course, many disabled people write outside of the standard journals because they lack the institutional capital that makes them academic feminists. More recently and more colloquially, my attention was drawn to a New York Times series on living with disability. This recent article by Elliot Kukla has a lot of good things to say, but I picked this to share:

Like many people, I had once measured my worth by my capacity to produce things and experiences: to be productive at work, share responsibilities at home, “show up” equally in my friendships and rack up achievements. Being sick has been a long, slow detox from capitalist culture and its mandate that we never rest. Slowly, I found a deeper value in relationship beyond reciprocity: an unconditional love and care based in justice, and a belief that all humans deserve relationship, regardless of whether we can offer anything measurable back. In these discoveries, I’ve been led by other sick and disabled people, whose value had always been apparent to me. Amid the brilliant diversity of power wheelchairs, service dogs, canes and ice packs, it’s easy to see that we matter just as we are.

 

Lesson #3: Do not tell your children that everything will be okay

When I first found out that I had breast cancer, first I freaked out quite a bit. I don’t want my kids to have to have a sick mom. Or even a dead mom. But then we had to decide what to tell our children. Luckily, it was summer and they were scheduled to spend a couple of weeks with relatives, giving us some time to plan.

When they came back we sat them down on the couch and told them that I had been diagnosed with breast cancer and that we were facing a difficult and uncertain year of treatments ahead.  We showed them these videos and told them that they were allowed to ask any questions that they wanted, even though we might not be able to answer all questions that they had.

Even back then, knowing only the partial story – I had not yet completed my “staging” – we resisted the urge to tell them that everything was going to be okay.

Pro Tip: Do not tell your children that everything will be okay. 

This was difficult because as parents we’re trained to keep telling our kids that everything will be okay, but really there is no way to guarantee to kids that this is the case. Even when we thought that my cancer was probably curable and survivable, we knew that the odds were not perfect.

Pro Tip: Do not tell your children that everything will be okay when it is obvious that it is not. 

Also, as soon as kids are old enough to grasp that you have a serious life-threatening illness, they are old enough to define “okay” for themselves. In truth, my kids will be okay, and they are supported better than many. They have, at the moment, two parents, four grandparents, eight terrific aunts and uncles, seven first cousins that they love, two second cousins that they see regularly, and countless friends and relatives who love them. Most of these people will be there for them for a very long time. They live in a peaceful, orderly place, where they always have enough to eat, a roof over their head, and access to excellent education and health care. In many ways, they are ahead of where I was at their age, so you can see that they will be okay in the big picture. At the same time, it would be unfair to tell them that it will be okay.

We consulted a few of the experts on family communication within our personal circles, and guess what – there’s no good way to spin this! It turns out that we essentially did the right thing. Experts like my sister, a clinical social worker who has seen many families through crisis or our local friend who has a history of working with troubled children, will say helpful things like “know your kids”, “always tell them the truth”, “have a good relationship with your children”, “maintain open lines of communication”, “know that when kids are acting out that’s probably a sign”, etc. A few good pieces of advice that we received:

  • Kids need to hear something many times for it to sink in. Like most pieces of advice, this is not just true for kids.
  • Keep routines the same, as much as possible. This is a good guideline to live by, especially after the principal at the kids school told them that it would be fine for them to be absent if they need to. (Don’t tell the kids she said this.)
  • Remind kids that they are loved. Check.
  • A dear friend and amazing librarian scoured up some of the best titles she could find. There are good books for dealing with early stage breast cancer, and good books for dealing with bereavement, but I don’t think there are good books for dealing with chronic illness or late-stage cancer. Still looking, though inquiries to the MBC community have yielded nothing.
  • Don’t push the talk therapy if they don’t seem to need it – this is intrusive. We did send La Neige to some sessions with a therapist, and that was helpful but not a magic answer.

A dear friend of mine is currently a nurse intern at a Very Big Name Research Institution in the US, and she just completed a short course on end-of-life care that is both practical and reflective of all the latest research. What did State-of-the-Art End-of-Life Care Course say about death and children (besides that, I’m not kidding, you only get one shot at death so you had better do it right)? According to the latest research, the more children are involved with a parent who is actively dying, the better for that kid. They will thank you later. Well, no, they won’t, really.

This little revelation happened to coincide with a bad time for me, when I had to drop everything to lie down and cry because I had no energy for my normal life and because my head just hurt too much. My daughter got to see me cry, so obviously we are all about doing the right thing here.

Meanwhile, The Prophet, who gained his nom du blog partly from the etymology of his name and partly from his innate spirituality, said when told about my cancer, “You tell me that I shouldn’t be sad, but I don’t feel like being happy.” When I was first diagnosed we had our wonderful Rabbi D over to just remind us that she is there for them. She blessed two mezzuzot that we had put off hanging on the front and back doors, so now every morning The Prophet pats his hand on the mezzuzah and then kisses his hand on the way out. At first I thought that this was just a fluke that I witnessed, but then I saw that he does it every day, even when he’s in a hurry. I asked him why later, and he said, “I don’t know why I do it, but the day just wouldn’t feel right if I didn’t.”

A couple of things you might disagree with your partner about

Back when we met, there was almost nothing that The Historian and I disagreed about except for “mushrooms are a delicious food item,” which remains a point of disagreement between me and the rest of my household. But other than that, there was nothing that we disagreed about, and no doubt that helped our relationship.

Once you have children, things to disagree about multiply. Most recently, we disagree about which podcasts I should listen to while on the same floor of the house as our children, ages 11 and 8. In truth, I like to listen to podcasts, sometimes while I am cooking. Sometimes the children are potentially within hearing distance. And sometimes these podcasts combine legitimate family topics like politics with profanity or flippant views of humanity, as does Pod Save America. Sometimes they combine favorite family concepts like fantasy with goofy digressions on sex, like badgers who turn into whatever species they have sex with, or or with pointlessly bizarre characters, like flowers who say in a diminutive southern accent, “I will fuck you up!” Now, you could be forgiven for thinking that I could just steer clear of podcasts with profanity and I’d probably be fine, but what if I don’t want to steer clear of podcasts with profanity? What if it exists as a release valve to combine a healthy dose of irreverence with important topics of the day, like the Republican-controlled Congress or dragons? How far do I need to protect my children from profanity and irreverence? I’m pretty sure that no one worked this hard to protect me from these things.

When you are dealing with a home and a family and a genuine health crisis, things to disagree about seem to multiply, .Another thing that we disagree about is whether you call basement flooding, or anything, “an act of God.” The Historian, it seems, is a committed atheist, whereas I am a committed quasi-agnostic. When the temperature goes from -10C (14F) to 2C (35C) overnight, that is notable. When it the temperature then proceeds to climb to a high of 10C (50F) and to rain for 24 hours in Ontario in January, well that’s pretty much an act of God, in my book. And if your basement decides to then leak like it’s never leaked before, well, there’s probably nothing to be done. There is especially nothing to be done if it coincides with your fatigue levels being elevated by the previous radiation treatment, which tends to cause levels of side effects that increase for several weeks following treatment.  How else does one explain these things?

 

Happy 2018!

Things that may have been heard during my Winter Holidays:

I got trekking poles for Hanukkah! I can go anywhere.

Let’s hope we have a White Christmas.

We can’t wait to see the cousins! I can’t believe that Neige and The Prophet are now the older cousins.

This is the year that I embrace being the friend who is bad at wrapping presents.

Jigsaw puzzles are really addictive, and communal.

 

Luke’s already saved the universe once, so it must be someone else’s turn. (And if we’re honest, we all wanted to go to Tashi Station.)

“Learn/teach from your failures,” is great advice, but books are Yoda’s enemy.

Oh, and on that note: you occasionally try to tell me that unpeeled avocado slices on a bed of fucking limes is food.

-15 Celsius with wind is really cold.

The thing that I want most for the holidays is a new fish tank, with real fish.

We have 8 new fish! Their names are Frey, Freya, Odin, Noir, Mr. Glowy-right, Mr. Glowy-left, Mr. Glowy-middle, and Mr. Glowy-straight.

2018 has got to be better than 2017. So says Catherynne Valente.

My New Year’s resolution is to meditate every day.

We have 5 fish!

We have 3 fish!

We gave Noir a Viking funeral.

This ad is everything for the depiction of moms

This ad was playing before the movie when we went to see the new Star Wars movie today.  Actually, rewatching this I realize that I may have been distracted for the first 27 seconds.

I won’t try to deconstruct the semiotics for you, but the link says that it is meant to depict single moms. Actually, I thought it was a depiction of my people, Moms Living with Chronic Illness.  It’s a great depiction of motherhood as being about things other than the smiling attractive mother who attends to her loved ones’ every need. You know, as we do.

I liked the Star Wars movie, but apparently the Ikea ad left a stronger impression because I’m still thinking about it.

Menopause begins in 3…2…1…

As culture, we don’t talk about menopause very much. It must be as important as puberty, motherhood, or any other major biological turning point, but I have yet to learn much about it. Some of my older female friends have been kind enough to offer a little wisdom, like: “Menopause changes everything,” “I don’t think I slept well for over a decade,” “Your body’s going to do what it’s going to do,” and, “Thank goodness that’s over.”  When I learned that menopause would start immediately upon having my ovaries removed tomorrow around noon, that was possibly the scariest part. That and the part about it being irreversible.  Keep ’em coming, ladies!

I’ve been reading Eve Ensler’s In the Body of the World: A Memoir of Cancer and Connection. I have a confession to make: I’ve never read or seen The Vagina Monologues.  But I know enough to know that it is highly ironic that Eve Ensler would develop cancer in her uterus and vagina. Her writing about it is wonderfully expressive and unabashedly political. It won’t replace The Bright Hour as my favorite memoir of the cancer experience, but it is way up there on my list.  If you read her work as earnest, it is insufferable, but if you read it as ironic, then it makes more sense. Here’s one thing she wrote:

HOW’D I GET IT?

Was it tofu?

Was it failing at marriage twice?

Was it never having babies?

Was it having an abortion and a miscarriage?

Was it talking too much about vaginas?

Was it worry every day for fifty-seven years that I wasn’t good enough?

Was uit the pressure to fill Madison Square Garden with eighteen thousand or the Superdome with forty thousand?

Was it the exhaustion of trying to change?

Was it the city?

Was it the line of two hundred women repeated in hundreds of small towns for many years after each performance, after each speech, women lined up to show me their scars, wounds, warrior tattoos?

Was it suburban lawn pesticides?

Was it Chernobyl?

Three Mile Island?

Was it my father smoking Lucky Strikes and my mother smoking Marlboros?

Was it my father dying slowly and never calling to say good-bye?

Was it my mother’s thinness and frailty?

Was it bad reviews?

Or good reviews?

Was it being reviewed?

Was it sleeping with men who were married?

Was it always being third?

Was it my first husband sleeping with my close friend?

Was it shopping and needing to shop?

Was it being a vegetarian for thirty years?

Was it Froot Loops?

Massive chorine in swimming pools?

Was it Tab? I drank a lot of Tab after I got sober.

Was it Lilt (the tosic-smelling substance my mother used to perm my hair)?

Was it Tame (the solution she used to get the tangles out)?

Was it crinoline (the abusive and starchy material I used to have to wear under all my dresses)?

Was it Shirley Temples? Ginger ale with red dye number two juice and a red dye number two cherry on top–a favorite of the sophisticated country club alcoholic father.

Was it drinking water out of plastic bottles?

Not being breast fed?

Canned chop suey?

TV dinners?

Was it turquoise popsickles?

Was it Epstein Barr?

Was it in my blood?

Was it already decided?

Was it deet?

Was it that I didn’t cry enough?

Or cried too much?

Was it promiscuous sex?

All those arrests at nuclear power plants?

Sleeping in radioactive dust?

Was it my IUD?

Was it birth control pills?

Was it not enough boundaries?

Was it too many walls?

Damn, I forgot to get arrested at nuclear power plants. But I did use Tame and drink the occasional Shirley Temple, so we have that much in common. I am grateful for those who can articulate what the illness experience involves, and Ensler has been an important voice for women’s experiences.

So it’s the holidays. I’m pretty sure that last night’s latkes are still slowly being digested in my stomach, which is at it should be on Hanukkah. As many recent articles and posts have noted, there’s not a lot, materially that we NEED over the holidays, other than the time and the experience of being together, so gifts are really not the point. However, your time, which has really come to be a stand-in for your life, is certainly valuable. It occurred to me that one of the nicest gifts that I have gotten is the people who have taken the time to read The Bright Hour or another cancer memoir that shares the experience of living with cancer on a day-to-day basis, so thank you to those who have done this, and if you are thinking of doing it, realize that this is something that you have done for yourself and for people who benefit from having their experiences voiced, shared, and heard.

The Ring

A few months ago, we started watching Peter Jackson’s Lord of the Rings movies with Neige and The Prophet.  The director’s cut is on Netflix, which means that once you start watching, the series lasts forEVER.  That last movie is a never-ending battle. But the visuals and emotions and story hold up very well, and you have not seen an Ork until you’ve seen a Peter Jackson Ork. And let’s not even get started on the Elves, except to say that we all want to marry Legolas and Arwen now.

The movies are about so many things, and one thing they are about is how much we love home. In a funny way, London, Ontario, has come to remind me of The Shire. It’s a sweet, safe community full of little houses and little gardens. Everywhere you go you tend to run into someone you know. And when you leave, you know you are in a different – and perhaps more exciting and special – place. Like Paris or Toronto or Bethesda, Maryland.

We weren’t watching LOTR in preparation for anything, mind you. We were just looking for something to watch, especially as the kids had recently been introduced to Dungeons and Dragons, and the LOTR world seemed right for them. In the movies, a comforting and peaceable world is ripped apart by senseless violence, and humble Frodo somehow becomes the one chosen to bear the burden of The Ring so that it can be destroyed and order restored to the world.

Then in October, I learned quite suddenly that I was going to need surgery because my cancer had progressed unchecked, so I dove in and had the surgery, well-supported by a cast of wonderful family and friends. And I came out of the surgery in good shape. But I realized: Shit, I still have The Ring.

I sat through those movies on the couch. I’m not going to lie, I slept through plenty of scenes. But scene after scene, poor Frodo carried that stupid ring. It got heavier and heavier for him, and his friends propped him up and helped him put one foot in front of the other. He learned to trust the equally abject Gollum so that he could continue on the journey, and he never rejected the stupid mission of carrying that ring to Mt. Doom to destroy it. In the end, he succeeded in destroying the ring, a monumental task that made the happy and wished-for ending seem like a dream or a pretend afterlife.

Sometimes it helps to have a metaphor to communicate what you are experiecing, it can fill out the details when you don’t want to. So one morning I mentioned the ring to The Prophet, and he got really excited. “Yes!” he said, “The Ring! Because you agree to carry the Ring, but you don’t know about all the other stuff that’s going to come with it. You don’t know that there will be monsters and a giant spider.”  The giant spider that menaces you in the semi-darkess is the reality.

This week the giant spider is that we found out yesterday that I am to have my ovaries out on Monday. We’re hoping it will be laparoscopic, that the recovery will be easy, that our holidays will still be enjoyable. It’s the reasonable thing to do – what do you need ovaries for when you have two awesome kids? – and the gynecological surgeon is excellent, so I’m in good hands, once again.  It’s just the giant spider behind the Ring.