My 40th High School Reunion is this year. Somehow, I was asked to be on the reunion committee 10 years ago for the 30th reunion. I agreed to be the administrator for our reunion Facebook group. One of the things I did besides helping people reminisce was to acknowledge birthdays. People liked it, a lot of us had fun at the 30th reunion, and I kept celebrating birthdays. I was surprised at how appreciated it was by people, these small acts of kindness. Consequently, I have kept posting about my classmates’ birthdays for the last 10 years.
I was contacted by one of the heads of the reunion committee to ask if I would continue my role as reunion promoter for our 40th reunion. Given my health risks, the fact that I have no one who can cover for me at work if I get sick, and the fact that I work with kids who are also at high risk for severe or long Covid, I avoid crowded indoor gatherings. And knowing that there are Trump supporters who are likely to attend the reunion, I don’t want to get harassed for wearing a mask.
I told the reunion committee member that I was happy to help, regardless, but that my attendance was going to depend on the venue, basically, whether it was indoors or outdoors. Her response was, “You have to come! You’re our girl! You deserve to be there!”
I had breast cancer in 2012 and two heart attacks in the space of 8 days caused by Spontaneous Coronary Artery Dissection (SCAD) in 2017. I didn’t expect these diseases at the ages I was, 46 and 51 years, respectively. Treatment, recovery, and facing my mortality was painful and scary. I try to live my life with the awareness that time is precious.
What I don’t think about is whether I deserved the illnesses or whether doing ten years of birthday greetings on FB somehow protects me from disease exposure because I deserve to be there.
I stopped believing in divine intervention decades ago. People get sick and die, people who don’t deserve it. Babies, children, families, refugees, living in all kinds of harrowing internal and external environments of famine, disease, violence, and war.
Everyone gets sick. Everyone dies. It is true that some suffer more than others but none of this is about deserving, except for people who’s basic rights to live without violence, with good food, clean water, access to medicine, are violated.
For the rest of us, it is just about the body, its capacity for life and healing as well as its capacity for sickness and death. Loss is painful and at times devastating. But there are many types of losses that are the normal.
In cancer recovery, we often speak of the “new normal”. It is a useful concept for many. When I got cancer, I worked with an psychologist who had a lot of experience with people facing physical illness. I told her that I not only wanted support through my cancer assessment and treatment but that I wanted to work hard to prevent depression or experiencing traumatic stress. Her main recommendation was to integrate my cancer experience into the rest of my life and to not compartmentalize it. She noted that people who try to shut off potentially traumatic experience from the rest of their lives, are more likely to get depressed or traumatized.
I can only speak for myself, but I found that accepting cancer as part of my life, writing nearly daily about my experiences with cancer assessment, cancer treatment, and my day-to-day life to be very healing. I don’t mean that it wasn’t painful. I experienced all of the grief emotions. I mean that my grief process was one that brought forth acceptance and healing. I drew on this when I got sick again.
Death and illness, life and healing, anger and happiness, joy and sadness, growth and decline, anxiety and equanimity, all of these things are part of the oldest normal.
Be well, friends.
P.S. The reunion has outdoor opportunities, so don’t worry about whether I can attend or not.
As you can see in the photo, Basie, our 9-year-old cat is beautiful. He is also snuggly and purrs a lot. Basie has asthma, which has gotten worse. He’s been a “good eater” for many years but during the pandemic, with someone at home all of the time, we did not do a good job monitoring his food intake. Basie would eat all of the time, if he could. Consequently, he is on a diet to lose 7 pounds. He has lost about 1/10th of a pound. 7 pounds is a third of his total body weight since he was weighed at his last veterinarian appointment. His vet has prescribed special food. I’ve been measuring it carefully. Basie complains loudly but he is getting used to it.
Having to lose a 1/3 of one’s weight is A LOT. As a comparison, if I had to lose a 1/3 of my weight to get into the “healthy weight” category for my height, I would have to lose nearly 60 pounds. Basie’s current weight makes his asthma worse and puts him at risk for diabetes. When I tell people that Basie is on a diet for his health, they don’t bat an eye. It makes sense that he needs to lose weight. When people see photos of Basie, they recognize what a beautiful creature he is.
Now, let’s talk about weight and people, specifically female people. How many of us have had our worth judged by our weight? How many times have we had our worth judged by our weight? I’d say that it would not be unreasonable to think a typical number is in the thousands.
How many of us have been judged for trying to lose weight or not trying to lose weight? Or trying and not being successful? How many of us have prioritized how losing weight can make us look more attractive versus physical or emotional health benefits?
There’s a lot of policing of women’s bodies and there’s a lot of reactivity about that. People can be repulsed by the sight of an overweight person and say something negative. When called on it, the response is often, “I just care about their health”. This response is bull shit most of the time. It’s just fat shaming. I’ve also seen reactivity when women tell someone that they are exercising and watching their diet, “BMI doesn’t really mean anything. It’s biased and a form of fat-shaming. You should never follow a restrictive diet. You need to love your body.”
I had a lot of shame with my body and being overweight from the time I was a kid to about age 48-ish. I had shame about my body and my weight even when I was not overweight. I had an audio-tape in my head that told me everyday that I was fat. By the time I was diagnosed with breast cancer at age 46, the tape only played when I was overweight. Having breast cancer provided me with a natural opportunity to re-visit my relationship with my body. I decided to make a concerted effort to try to stop the tape and over time, I learned to love my body and to appreciate what it allows me to do in my life. The daily tape stopped and although I still have to work on it, the shame is nearly completely gone.
Even when I had a negative body image, I was careful around my daughter to not talk about my weight, her weight, or the times when I was engaged in a campaign to lose weight. Once she became an adult, like 21 or so, I commented once that I was trying to eat less. (This was after my SCAD heart attacks in 2017, while I was completing cardiac rehab.) She said, “But Mom, you’re not fat.” I replied, “I like my body and I think I look good but my doctor thinks it would be better for my heart to weigh less.”
Like a lot of people, I put on weight in the first few years of the pandemic. I’ve tracked my meals with apps for years and although I did not follow plans perfectly (I tend to do a fair bit of late night snacking after a day of healthy eating), I was not really eating more than I did when I was younger, and weighed less. I am active and walk 3-4 miles almost every day in addition to hiking during the summer. I’ve done this for 12 years. Nonetheless, my attempts to lose weight in the last few years, have been difficult.
In the meantime, I’ve injured the ball of my right foot. I have Morton’s Neuroma, which is caused by a thickening of the nerve under the metatarsal bones. The nerve thickens like a callous in response to repeated pressure on the ball of the foot and then the bones hit the nerve. It causes extremely painful shooting pains in addition to soreness. The injury was caused by my stair training last spring and summer in preparation for our camping trip to Alaska (which ended up being postponed). So my right foot was getting pounded by walking up and down all of those steps. My first response was to change my shoes from hiking shoes to HOKA’s, which are thickly padded and made for foot rehab. That helped and then it didn’t. I stopped doing the steps. For hiking, I bought a second pair of HOKA’S, a different model, and then I switched shoes halfway through the hike. That helped put the pressure in a different place but I was not able to do some of the hiking, especially when it was rocky or there were lots of tree roots.
By December of this year, I was in pain my often than not and by last month, I could barely walk around the house. So I went to my internist, thinking that I could get a referral for physical therapy (I thought I just needed to stretch my calves and Achilles tendon). Instead, she diagnosed Morton’s Neuroma, which is not treated with PT, and referred me to a podiatrist. I was able to get into the podiatrist the next day and I am now getting treated with accompanying improvement.
The main goals of the treatment is to 1) reduce inflammation of the nerve and 2) reduce pressure on the ball of my foot. I’m taking a series of steroid shots to reduce inflammation of the nerve quickly. I’ve started wearing orthodics that shift my weight to my arches from the ball of my foot. I have selected shoes that all better for my particular foot problem. I met with a different podiatrist (a well-known evidence-based podiatrist) earlier in the week. He told me that for the short-term, my bare foot should never hit the floor, even in the shower. So now, I have shower shoes and house shoes.
What does this have to do with weight? Not surprisingly, carrying more weight puts more pressure on the ball of my foot when I walk or run. Carrying more weight also makes my heart work harder and I have a chronic heart disease. Yes, there is a bias against women and weight in our society and that affects the medical field. And yes, programs like Noom and Weight Watchers contain harmful elements. And yes, restrictive eating is a bad idea for some people. This is my body. Losing weight is a good goal for me, and I know that tracking what I eat, being selective about what I eat, and reducing what I eat can be a helpful combination for me.
Losing weight is not easy, especially after menopause. Research on weight loss suggests that diet is more important than exercise in dropping pounds. (Exercise has so many emotional and physical health benefits. I am not discouraging people from exercising.) I’ve long suspected that in following a weight loss plan like Noom or Weight Watchers (I’ve lost weight on both in the past), I’d have to eat less than the plans suggested. I’d been on both Noom and WW during the pandemic and even when I followed them, I didn’t lose weight. I’d never really considered weight loss drugs before but I thought it was worth exploring. I take a statin drug now for my cholesterol. Losing weight is really hard. Why do we think we’re “cheating” if we consider other options?
I had my annual physical last December with my new internist. (My long time internist, Dr. Hyde, is enjoying a well-deserved retirement). I brought up my weight. She mentioned her weight loss success by reducing late night snacking. (She is not overweight and looks no older than 40.) In other words, she made weight loss sound easier than it is for many people. I told her that I’d tracked so many consecutive meals on Noom, thousands, that the counter went back to 1. I’d exceeded the counting capacity of the program. I told her that I’d been keeping within my points on Weight Watchers. I said, “I’m giving this one more effort to be incredibly scrupulous and to make sure that I am tracking portion sizes correctly. I’ve lost a couple of pounds since Thanksgiving. But it is so difficult to lose weight since menopause and if there were weight loss drugs that I could take that didn’t have bad side effects, I would do it.”
She told me that I qualified for weight loss drugs. We discussed options. I expressed interest in the oral medication, Contrave, which is a combination of two drugs that have been around for a long time. The combination is associated with modest weight loss for about 45% of people and it is not contra-indicated for me in light of my cardiac issues. She told me to do research and to message her if I wanted a consultation with the pharmacist. This is a new process at my medical clinic. You meet with their pharmacist for a new prescription. So I set up a telehealth visit with the pharmacist after one of my healthcare team informed me that my insurance does not cover Contrave (it’s $500/month) so I could not get a prescription. I replied, “Can’t the pharmacist prescribe the generic forms of the two medications that make up Contrave?” The health coordinator replied that this was possible. I am perpetually stunned by the amount of medical knowledge that’s required to advocated for my needs.
To make a long story short, I got the prescriptions ($15/month) and completed my first week yesterday. Even on the starting dose, it seems to be making a difference. I’d been losing an average of 1 pound a week since Thanksgiving and lost 2 pounds last week. My portion sizes and snacking have decreased a lot. I have lost a total of 10 pounds and I am starting to feel the difference. I am hoping that all of my efforts to heal my foot injury will translate to wonderful hikes in Alaska this summer.
Like Basie, I am beautiful. My body is a marvel. I hope to lose more weight so that I can do more of the things that I like to do, like ceramics, cooking, walking, and hiking, all things that require my being on my feet.
I hope sharing this will help reduce some of the baggage around women and their bodies. Our bodies are beautiful. They keep us alive. This is my body. I do with my body what I believe is best for me. You have your body and you make your decisions for yourself. This is body autonomy and it’s a beautiful thing to support in one another.
People, I’m going to get nerdy. I’m going to talk about a subject that strikes doom into many people’s heart. I am not joking even though I am using strong language.
I am going to talk about risk factors and what they mean from a research perspective.
When the media talks about “what causes/prevents cancer” or “what causes/prevents heart attack” or any other bad disease, they are usually referring to risk and protective factors. Example number 1. We know that smoking “causes” lung cancer. What that really means is that smoking is risk factor for lung cancer. We all know people who smoked throughout their lives and never got lung cancer. And some of us know people who got lung cancer who were never smokers.
So from a research perspective, smoking does not cause cancer. Smoking is a causal factor for lung cancer. It increases the risk of developing lung cancer by quite a bit.
“Elizabeth, that means that I can smoke, not feel guilty about it, and because George Burns smoked cigars all those years and lived to 100 years-old, I won’t get lung cancer?”
No, it means none of that. George Burns beat the odds. I mean literally just that. One, he lived much longer than average. Two, he lived much longer than average given that he was a smoker. No one reasonable ever said that there is a 100% chance of getting lung cancer if you smoke or that there is a 0% chance of getting cancer if you never use tobacco products in any way.
Okay, I promised to get nerdy but I am taking it back. Let me put this plainly. You can engage in activities or behaviors that are risk factors and end up with none of the risky outcomes. Risk is relative, not absolute. You can engage in activities or behaviors that are protective factors, you can be a teetotaler, never smoke, exercise regularly, eat well, be nice to your mother, and still end up with scary diseases. Those behaviors only reduce risk they do not eliminate any risk of disease.
And come to think of it, no matter what we do, some day, we will end up dying.
Does that mean that what you do today, tomorrow, or the next day doesn’t matter?
Thanks for understanding my need to be a a psychologist nerd. Yes, we are all about the thoughts, feelings, and behaviors but as Ph.D.’s, we are additionally, all about the research. Also, guilt is when you regret doing something that is in conflict with your beliefs and values. Sometimes I wonder when we talk about feeling “responsible” for our diseases that we are really talking about shame rather than guilt. Guilt actually can be productive and helpful. I didn’t believe that for most of my life until I understood the difference between guilt and shame. Guilt refers to behaviors that we can chose to change. Shame is the feeling, “I am bad.” That’s a lot different than guilt, “Wow, I wish I hadn’t done that.” Sometimes I do things that are at odds with my beliefs and values. I don’t think that I am alone in this. I try to treat myself with compassion. I am not always successful. I try to be compassionate and patient with myself for not living a perfect life. I am not always successful.
My proposal to myself and with all kindness, to you is, “How do you want to live your life today?”
Lately, I am finding it easy to tip my toe into waters of despair. There have always been heartbreaking world problems but in this country, there are heartbreaking problems being purposefully created. Purposeful assault against vulnerable people and against our fragile Mother Earth. Oh yes, there is also the continued assault against our republic. The first anniversary of my dad’s death is coming up on July 5th. I have been feeling that, along with other personal losses, my scary past illnesses, parenting worries, for the last month.
Even for a mostly extremely lucky person like me, life is hard. Fortunately, I am able to take my toe out of the water of despair. Then I see a sliver of hope. It is a sliver but it is there. It is meaningful. It is an opportunity, fragile as it is. I would like to be more hopeful but I’m not.
Most of the day and most days, I feel energetic and happy. And then I feel the restlessness of wanting to get away. The sadness doesn’t last long, sometimes 30 seconds, other times, an hour or so. When I feel despair, it is perhaps for a few seconds. However, the restlessness stays with me. It makes it hard to do seated meditation. It makes it hard to write, which is why it has been so long since I have posted.
What I find easy, these days, is to hike. The forest is lush and green. The mountains are abundant with wildflowers. My body is gaining strength to handle steepness that I was not able to do when I was younger. Steepness gives way to vistas of nearly unimaginable beauty. The promise of a hike is enough to motivate me to put in long days of work and to get my chores done at home. I am able to free up time and space to get away.
And it’s not that I don’t think of the big problems when I am hiking because I do. But I do it while also being surrounded by a larger context of beauty and nature’s reminder of the vastness of time, space, and the ongoing life cycle. These things are bigger than me. They are bigger than our species. My mindfulness teacher talks about “residing in a larger container of awareness”. She is talking about something I don’t yet fully understand but I think I am getting gaining understanding.
I am grateful for the life circumstances that allow me to protect my hope and to protect my love of life and being. This hope motivates positive action. Thinking about problems is not the same as constructive action. It is merely grieving in place. I am learning and re-learning that I can grieve and move at the same time.
The first time that I learned the importance of pacing, I was pregnant. The fatigue was really challenging. I was keenly aware of myself as a limited resource. I prioritized. I still ended up doing a lot but it was stressful and work was unsatisfying in many ways. Then I became a mother and it all became too much for me. I became clinically depressed, got treatment, and took a good look at my life. I was no longer depressed and with time, my energy increased and I was able to do more work than I had previously.
In 2012, my daughter was a teen and did not need my constant attention. I was working a lot at my private practice. I worked hours that I thought I “should” even though I was working more than full time hours during most weeks. I was working at a hard pace and if I am completely honest with myself, enjoying making decent money for the first time in my life.
Later in that year, I was diagnosed with breast cancer. I learned how quickly daily work schedules can be changed when they have to be. It was incredibly hard. Two years later, when I was done, I was still wiped out, though slowly regaining energy, not to full strength, but to a higher level than before. I have not returned to full-time work since that time. I work about 80% of full time to allow for self-care.
Lately, I have been literally pacing myself. I am in training for a big hike. I am not naming it because it is a kind of hike and not really a specific hike. I want to increase my ability to hike uphill. I really enjoy hiking but I have avoided certain hikes for decades because I had trouble with elevation gain either due to injury or lack of fitness. I also had a fancy cardio test a few months ago and learned that although my aerobic capacity is better than average, my anaerobic capacity is less than average. I start building up lactic acid earlier than most. I wonder if this has always been true. It may explain why as a kid who was athletic, I hated running long distance and sports like soccer, which seemed like non-stop running. I am from Seattle and as you may have noticed, it is surrounded by mountains. There are a lot of steep hikes.
I am hiking a lot, gradually increasing the elevation of the hikes. I take photos, an activity I love to do, which also provides little breaks along the way. I am learning to hike at my own pace instead of trying to match the pace of others. Uphill, I am slow, but steady.
The frequency of the hiking is higher than before. I am going out 1-2 times a week to hiking areas. Sometimes I hike alone and other times I don’t. I am enjoying it immensely.
I do notice that it is a big difference in my level of outdoor activity. It reminded me of the second summer after my cancer diagnosis. I spent the first summer in surgeries, one after another, three total until the margins were finally clear with a right side mastectomy. At the end of the summer, I started one of many reconstructive surgeries. I had lost a summer of outdoor opportunities living in a place that has some of the nicest summers you will ever experience. By the next summer, I was bound and determined to live outdoors as much as I could, considering that I was still in treatment. We had a ball.
Two years ago, I was recovering from a SCAD induced heart attack and traveling to the Mayo Clinic. Last year, we were caring for my dad, who died in July.
At this moment, I am healthy and energetic, thanks to luck, exercise, healthy eating, yoga, and meditation. I am enjoying what I am able to do with this body of mine, which has been through a lot, and will be through more. At this point, this pace is right for me.
April was wet but beautiful.
May has been filled with splendid views and wildflowers!
I did a saliva DNA test for my ancestry through Ancestry.com about a year ago. My husband was a bit surprised, “Now you’re DNA is out there.” I replied, “My DNA is everywhere. It has not been private for a long time.”
In 2012, I was diagnosed with breast cancer. I underwent BRCA 1 and 2 DNA testing. The test results suggested no mutation of either gene. Mutations are associated with increased risk of breast cancer, ovarian cancer, and prostate cancer.
In 2017, I had two heart attacks within 8 days, due to Spontaneous Coronary Artery Dissection (SCAD). I provided a blood sample to the Mayo Clinic, as part of their DNA registry to identify genetic contributions to SCAD. A few months later, I had some more genetic testing done through a local cardiologist. I found that I have a genetic marker for elevated cardiac risk.
In my situation and with my personality, I prefer to gather information, if there’s not physical risk associated with it. But this is not for everyone. This is why there are genetics counselors, to help us make informed decisions about whether testing is the thing to do and to help us understand the results when we do it.
There are two times that I have refused DNA testing and it has been on behalf of other people. The first was when I was pregnant with Zoey. I opted not to have amniocentesis after a blood screen indicated increased risk for Down’s Syndrome. After looking at the testing properties of the screen, talking with a genetics counselor, and meeting with a neonatal specialist, John and I agreed that the risk of Down’s Syndrome was really low (the screen had a really high false positive rate), not high enough to risk miscarriage through the amniocentesis procedure.
When my dad was diagnosed with stage IV prostate cancer in March of this year, there was a referral for genetic testing. Mom and I agreed that this was not top priority at the time. Then my dad got an emailed referral once again about a month before he died. I handled Dad’s email correspondence.
Dad had so many medical appointments. He had dementia. He was fully physically disabled, needing two staff members at the nursing home, to move him. (He would later only need one person and that’s what allowed him to be discharged and die at home, as he wished.)
Genetic testing? Really? Since when is it surprising for an 85 year-old man to have advanced prostate cancer?
However, I don’t know the answers to all questions. I am not an oncologist. I contacted the genetics clinic and asked whether it was really important that Dad have the testing done, given his advanced age and limited quality of life. I was told that the referral had been made “due to family history of certain cancers.”
It was now clear to me that it was my history of breast cancer that led to the referral. I wrote back to the PA, explained that I’d had BRCA 1 and 2 testing, was negative, but that my testing had been done in 2012. I asked if she could tell me the testing protocol so that I could get the testing done instead of my dad. She very kindly forwarded my question to one of the physicians, who told me that she agreed that testing wasn’t a great idea for Dad and suggested that I ask my oncologist for what testing to get done.
I haven’t gotten around to the testing yet. I just sent my oncologist an email, asking for her opinion.
The Information Age puts us in the position of finding the sweet spot between too much and too little.
You may have heard that the west coast of the U.S. is filled with smoke from summer wildfires. We’ve been in the latest cloud for a few days. As I watched the ash land on my car yesterday, I was reminded of the last time I saw ash in the sky.
It was last October. I was at Spirit Rock Meditation Center for a five night meditation retreat. To the north, there were fires in California, ravaging forests and homes. I was at the meditation center without my cell phone. I had given it up on the first day of the retreat so I could have the retreat experience I wanted. I had, however, told my husband that if any time while I was there, he feared for my safety, he merely needed to call and tell them there was an emergency and I would return home. That never happened. The retreat staff did a masterful job of informing us, just enough, of our safety and the progress of the fires. I was assured that they would not put us in harm’s way.
I had gone to the retreat to be alone with myself, five months after the unexpected calamity of two heart attacks caused by Spontaneous Coronary Artery Dissection, a poorly understood cause of heart attack among primarily seemingly healthy women.
I meditated. I ate. I walked. I slept. I watched the ashes fall on the days of smoke. Sometimes I felt restless. Sometimes I felt bored. Sometimes I felt awkward. Mostly I felt that I was exactly where I wanted and needed to be. I had moments of lovingkindness, peace, equanimity, and mindfulness.
We have ashes falling again. They fall from the sky and settle. The air is hot and acrid. There have been health warnings to avoid vacuuming carpets inside to prevent the ashes that have settled into the fibers from roiling back into the air.
There has been a roil of ashes in my life. Natural calamity. My father died. This happens, especially after a life of 85 years. It is natural but it is calamitous. Normal doesn’t mean good. It means, common. Death is a normal part of life that is really really hard.
Some of the ashes are settling. As I watch them, I am reminded of the mindfulness analogy of the snow globe. If you stop shaking a snow globe, the roil of snow settles. The scene is peaceful but the snow is there.
I can’t help the ashes that fall from the heavens and follow the winds, but I can keep my vacuum tucked away in the closet, at least for now. For me, this means, continuing to protect my emotional and physical energy. I am careful about how much socializing that I do. It takes a lot of energy right now. I do a lot of art. I continue to keep my patient load on the lower side. I ask for help and understanding. I keep in touch with my mom every couple of days. I am taking short vacations.
I am doing my best to let enough ashes settle so that I can see where I am.
Several years ago, I was back east. My dear friend, Cheryl’s, mother had died after a long illness, early-onset Alzheimer’s. Cheryl had been her mother, Daisy’s primary caregiver since she was a 25-year-old psychology intern. Fortunately, Cheryl lives in her childhood home in a wonderful neighborhood. When I visit her, neighbor’s come over to greet me because they know that I am one of Cheryl’s people. Nonetheless, it was incredibly difficult for her, a single woman finishing up graduate school and starting her career, to care for her mom. Cheryl has her own health challenges, which are exacerbated by stress, and required multiple surgeries during her mom’s life. After several years, Daisy entered a nursing home. As her life neared its end, her best friend, Shirley, a retired nurse told Cheryl that her mom’s time was coming to a close. It is so hard to know exactly when someone is going to die and even harder to let someone go. Daisy had been a single parent to Cheryl and they were very close. She died before a priest could come out to perform last rites, Anointing of the Sick. The parish priest did come afterwards and performed the final Roman Catholic sacrament.
I arrived a few days later. A group of neighbors set up a repast of Trinidadian food that had been brought by caterers (Cheryl’s parents were both from Trinidad) while the rest of us attended the funeral. The officiant had been Daisy and Cheryl’s parish priest many years before and was now a cardinal and a family friend. The service was beautiful. One of Cheryl’s friends, a neighbor, sang. The cardinal also sang parts of the mass and he had a very nice voice. After mass was ended, we went to Cheryl and Daisy’s home for the repast and celebrated Daisy’s life.
I stayed on for a few days. I went to mass at Cheryl’s parish. The priest who had performed Daisy’s last rites presided over mass. The theme of his homily was “what are you waiting for?” To my horror, he used the story of being called to perform last rights on Daisy after she’d died. He went on and on. I left church humiliated and livid on behalf of my dear friend who had been nothing but a wonderful daughter not to mention the fact that he knew that she was not only a member of his parish, but one who had just lost her mother to a truly horrible disease. Both Cheryl and this priest had a story about what had transpired. They were very different stories. It is easy to call one of them right and one of them wrong. I know which one I would call wrong!
I have not written any entries in this blog for nearly a month. I have used the month thinking about the stories we tell that provide meaning to us in explaining our life experiences. Breast cancer survivors tell lots of meaningful stories. So do heart attack survivors, by the way. Not surprisingly, they are some of the very same stories about “kicking illnesses ass”, about “being given a second lease on life”, and even the perception of illness as a “gift”. There are also the stories of “My life will never be the same” and “What’s going on? This is horrible!”. There are also national heart awareness days, including the recent “Wear Red Day” to raise awareness of cardiac disease in women, the number one cause of women.
I have been living in a particular breast cancer blogging community for nearly six years now. I find that I bristle at some of the narratives told by heart attack survivors. I have also not delved deeply into the cyber community for SCAD survivors. There is a lot of raw terror in that community. It makes sense. Most of the women are young, had a heart attack out of the blue, and they have cardiologists who don’t understand their condition. Those are the women who have a narrative of chaos and literal heartbreak. I don’t bristle at their stories. I just feel very sad for their suffering. It’s the catch phrases used by the women who by all appearances seem to be coping well. They are the ones who are more likely to use the phrases that are so controversial in the breast cancer world.
Yesterday, I thought back to perspectives of my friend and the priest around Daisy’s death. The priest’s actions were clearly “wrong” in that they were unskilled and did not demonstrate compassion for others. The stories they told were very different. I do think that Cheryl and the priest shared something very important. They were both dealing with suffering. How was the priest suffering, you ask? Admittedly, I don’t know his mind but I have some guesses, based on his job. Priests are on-call constantly. And they are on-call for decades. Not everyone is up to that every minute. I can see someone getting wrapped up in the stress of this and having a fit about an inconvenience. This does not excuse his behavior but it offers a possible explanation.
The stories we tell may either help or amplify our suffering. The helpful story I tell myself may be one that would cause suffering to someone else in a similar situation. This is why the “cancer is a gift” narrative doesn’t bother me the way it does some others. I can see that it may help some people. As long as people don’t explicitly tell me how I should view my own life experience, I am fine with it. What I have been struggling with is the backlash against these narratives. It is one thing to say, for example, “Cancer was not a gift for me” and quite another thing to say, “Cancer is a gift to no one.” To me, that causes the same problem as the one that is trying to be solved, that is, prescriptive language that defines experience.
But really, what does it matter to me? And who am I to invalidate anyone’s personal characterization of illness, just based on the ideas? If you want to tell me that “cancer’s a gift”, that’s fine as long as you are not my husband or another close loved one. If you want to tell me “cancer’s never a gift.” That’s also fine. If you don’t like the word, “journey” or any other phrase or word that is currently popular, that’s fine. I define my own experience. And the narrative that I am putting together is dynamic and at times, very messy. I respect myself. I respect you.
As always, I wish you peace, joy, and to be free from suffering.
Five years ago, I was diagnosed with breast cancer and after two lumpectomies, had a right side mastectomy. The right side of my body was plotting against me.
A few months ago, I had two heart attacks, spaced eight days apart. The left side of my body was plotting against me.
We my sides battling? What side was I on?
Both sides of my body are me. Diseases have threatened the integrity, the wholeness of my body. Body systems need to work together reasonably well in order to sustain life.
Integrity is not a battle. Battles don’t produce wholeness, healing does.
I can’t fight against myself, well I could, but I don’t want to. I want to live with the reality of myself. I will not take sides.
Yesterday in Charlottesville, VA, there was a terrorist attack on peaceful protestors, carried out by a young man who had joined the march for white supremacy. There were others who terrorized with hate speech.
This event was not born without historical or cultural context. There are excellent writings about this and one point that is made over and over is that given our history and our current culture, we must be vigilant. There are also many condemning the white supremacists and making statements that put them on another side, noting that they came from out of town, they are not representative of Americans as a whole, and “this is not us.”
Humans, like other animals, have dominance hierarchies. Aggression is part of our make-up. It is a spark in each of us. For some of us, it is a small fire, and for others still, an inferno.
In my mindfulness practice, which waxes and wanes, by the way, I have found that through self-observation, I have found more acceptance. And in accepting more, I find it easier to change, to get past the guilt, shame, confusion, and denial that make me battle with myself.
We are connected by our humanity. I cannot deny that I do not share something important with people who identify as white supremacists. I believe that all are worthy of respect, respect for the intrinsic value of each person. What people do, that’s different. Respecting or condoning actions is different. It boils down to what I tell kids, “There are no bad kids. I have never met one. But what you do, can be okay or not okay.”
The acceptance of oneself, each of us with all of our flaws, allows us to remain part of humanity rather than running off in shame. It allows us to look closely at ourselves and make steps toward healing.
Our country has never worked perfectly but right now, all of the diseased parts are inflamed. It is time for self-examination and action.
We have a painful road ahead; let’s take the most healing path that we can. There are many things that I am against. I am against hateful ideology. I am against aggression. But I am also on the side of humanity.
It started when I was born. I was early and not quite baked. I was born with Infant Respiratory Distress Syndrome, which was known as Hyaline Membrane Disease at the time. My lungs did not work properly. Back then, they didn’t know how to treat it because they didn’t understand the cause. But I made it. Yes, I have residual respiratory issues, but they have been minimal.
In 2012, I was diagnosed with breast cancer. We were back to the thorax, the trouble-maker. I didn’t really make the connection, at the time, about this coincidence of location.
Five years later, exactly three months ago, I had a heart attack! Eight days later, I had another.
There’s a colloquial rule of thumb in research. Two data points can suggest a trend. Three can reveal a pattern.
Well, I’ve had four thoracic events. “Thorax” is a funny word. However, it is a very important part of the body and when it’s dysfunctional, it’s not cute or funny, at all. Like Dr. Suess’ Lorax, my thorax has a funny name but an important message, “I am the thorax, I speak for disease!”
Horrible word play, I know. I may or may not have, contrived a way to work it into this post. It’s hard to say. What I will say is that my thorax has been an intermittent trouble-maker. I will also say that I started this blog with a word-play filled title, with a serious theme of identity. “My eyes are up here.” My disease is not the sum of my life. My diseases are not the sum of my life.
I’ve been blogging for five years now. I blog about my life. I blogged a lot about breast cancer. As I blogged less about breast cancer, I was fine with that. When SCAD entered into my life, I had a brief concern that my diseases were competing for limelight in my blog. What is this blog?
My heart is pumping. My lungs expand and contract as I breathe. I have surgical scars but no known cancer. Thorax, you don’t speak for disease. You speak for life, my life, with all of its parts.
George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).
My Eyes Are Up Here 