Archives for posts with tag: mindfulness

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.

Peace friends.

Life is full of choices but there are some choices we don’t have. We don’t choose to be born. This is something about which those of us who have or have had teenage children have been informed. Most of us also don’t choose how we die but want a peaceful passing without suffering.

My dad enjoyed good health for about 81 years. Then he started showing symptoms of Parkinson’s Disease, which he tried to ignore, all the while becoming increasingly impaired physically and cognitively.

Dad came to Zoey’s 19th birthday last September. He was walking unsteadily with a cane and to our horror, was still driving. By October, he could barely walk with a walker and to our horror, was still using the stairs in the house. His first hospital trip was in November. An enlarged prostate had blocked his urethra. His bladder was drained of 2 liters of urine and he was admitted to the hospital. Dad’s bladder continued to drain with a Foley catheter, something he hated, and as it turned out, would need to keep for the rest of his life. Noting symptoms of untreated Parkinson’s Disease, the P.T. and O.T. department referred Dad for short-term rehab.

The first rehab facility wasn’t home but it was really nice. Dad had periods of confusion accompanied by agitation at home, especially at night. Mom was up with him during those times. Dad felt well cared for there. He was a charming and grateful patient. Dad made good progress in his physical therapy and started taking medication for suspected Parkinson’s. Mom and Dad celebrated Thanksgiving and their 63rd wedding anniversary in that facility. He was discharged shortly before Christmas and enjoyed the family party at his house.

Dad was back in the hospital in March with a gall bladder attack. It was there that stage IV prostate cancer with bone mets was discovered. Dad started treatment immediately, taking an oral hormone blocker. He already hated his frequent urology visits and now oncology visits. Dad hated being in hospitals and medical clinics almost more than the treatments he received.

There was still the issue of his gall bladder. At the urging of an incredibly kind and experienced palliative care physician, he saw a general surgeon to have his gall bladder removed. It was planned as an outpatient procedure. I was dubious and the surgeon was kind and realistic about the chances that Dad would be admitted to the hospital for monitoring, especially for signs of infection. After surgery, Dr. Burke explained that Dad’s gallbladder had been “dead”, something that likely happened after years of dysfunction. He also explained that the surrounding tissue was inflamed. Dad was admitted to the hospital overnight and discharged the next day.

Dad did get an infection but it was due to his Foley catheter. Shortly after leaving the hospital, he was readmitted. Dad was sitting in his favorite chair, was in pain, and couldn’t move. During his 12-day hospital visit, he became septic. I really thought he was going to die during that time. He responded to antibiotics and improved. However, Dad’s mobility was quite limited and not good enough to be discharged to home. He went to another rehab facility for another 30 day stay. Unfortunately, the nice facility was not available. The one he went to had good physical and occupational therapists but the environment was bleak, the nursing staff was inconsistent, and the communication about his progress and treatment plan was poor. Dad hated it there. He refused almost all food while he was there, even when we brought outside food.

During the earlier part of these months, Dad and I had conversations about his wishes for a peaceful death and an end to his suffering. Eventually, the idea of a peaceful death became impossible. How could Dad have a peaceful death with all of the suffering that had already transpired? Dad had been an outdoorsman, a builder, an athletic and vigorous man into his early 80’s. He was a level-headed, methodical thinker. Dad had a mind like an engineer and a sensible person. Dad and Mom had decades of wonderful married life. Dad lost his ability to stand, pee on his own, have sex, and even the ability to consistently know where he was. At times of confusion and agitation, he was mean to Mom. When he remembered that he was mean, he felt guilty. He also asked to die during the night, several times a week. This went on for months. The idea of a peaceful death sounded like a joke.

Nonetheless, we kept trying. It was June. The neurology appointment that we’d waited 7 months for had finally arrived. Mom and I wondered if it was wise to bring him to it given how much sicker he’d gotten and how much he hated going to see doctors. We ultimately decided that it was important for him to have a proper diagnosis and treatment. Dr. Davis was very good. She took her time, confirmed the Parkinson’s Diagnosis and modified Dad’s prescriptions.

Within a week, Dad was actually able to initiate conversations. He was more responsive. He became interested in his P.T. and started practicing getting in and out of bed at the rehab facility, with the help of my brother, Steve, who is a natural P.T. Dad started working to go home. He wasn’t always convinced that he was going home or that the rehab facility was not his home, but his lucid periods were longer and more frequent.

I pressed the facility for a progress update because they hadn’t told us a treatment plan or anything. By the time we had a case conference meeting, Dad was mobile enough for discharge. We planned discharge and got a referral for hospice services. Dad was so excited that he was going to be discharged.

Going into hospice care meant stopping aggressive cancer treatment, Lupron shots, every three months. I explained this to Dad and got as clear of an answer that this was what he wanted, as I could, given that he slipped in and out of orientation. Fortunately, we’d had talks before. He had told the palliative care physician that he wanted me to advocate for his wishes. Fortunately, Mom and I wanted the same for him.

Dad was also getting a bone strengthening injection from oncology to protect him from bone fractures. I asked the hospice nurse, Kim, who did Dad’s initial assessment, whether he would be able to continue to have them. Kim told me that she had to contact the regional medical director for hospice, a physician in Arizona, for authorization.

Kim called back later that day. Upon seeing my dad’s file and noting that he’d only been treated for cancer for two months, the doctor asked, “Why do they want hospice now? If he was treated for the cancer, he could live three more years?”

Kim was really kind. It was a fair question to ask given the information the physician had. I explained that this was not my dad’s prognosis, we were told 1-2 years. I also explained his daily suffering and his almost nightly despair. I noted that doctors kept finding things wrong with him and that I wondered what was “under the floor boards” that hadn’t even been examined. I explained my Dad’s wishes and my commitment to honoring them. Kim was understanding and supportive.

Dad came home on Monday 6/25. He was so happy! My brothers and my husband had built a wheelchair ramp for him over the previous weekend. He loved it! Hospice had delivered all of the durable equipment over the previous weekend and we’d put it in place. Dad loved it! “Hey Dad, look at what Hospice and Medicare have provided for you!” The intake nurse, Helen, was kind. Dad stayed awake for the whole meeting, which was unusual.

My brother, Steve, came to the house daily to provide custodial care so that Mom and Dad did not have to hire people privately. Dad would be cared for by Mom and my brother, by family. What a blessing! Steve planned fix-it projects for the house and took Dad on field trips to the hardware store, in the van he had bought especially to transport Dad.

Dad started eating again. He was awake longer. He was talkative. He had a few really good days. Home had made him so much better. I was thinking about the upcoming months with Dad.

After less than a week at home, Dad had a really agitated night. He and Mom were up all night. He kept saying that he needed to get up out of bed and crying for help. The hospice nurse came over, discovered that his catheter tube was blocked, fixed that, gave him lorazepam for agitation and instructions to keep giving it to him. She instructed Mom and Steve to keep Dad in bed for the day for rest and that he would likely sleep through the next day. Dad went to sleep. It was a Friday. He slept through Saturday.

He was still asleep on Sunday. We figured that he was still sedated and needed to sleep it off but we were also worried. Steve called the desk nurse for hospice. She said that she would have one of the nurses call him but also said, “Prepare for a peaceful death.”

“Prepare for a peaceful death!” What????????!!!!!!!!!! Just the week before, I had been asked if we were starting hospice too soon!

The nurse came to visit, said that she thought the lorazepam was still working through his system. Monday came and he was still mostly asleep. The hospice nurse came over to the house. She said that she smelled ketones in his urine. He was burning fat instead of sugar. She said that she thought he was “in transition.” Steve called in the night nurse, who we particularly trust, for a second opinion. She said the same and estimated that Dad would likely die in a couple of days. She also cautioned us to pace ourselves for the possibility that it could take a couple of weeks.

The next day, Tuesday, Dad was significantly more alert. He asked for ice cream, which Mom and I gave to him. He saw the birds lighting on the tree outside his window. Dad moved his mouth to the Lord’s prayer when Mary, the lay minister from their parish, brought him communion. Father Ed, the parish priest came over a few hours later to give Dad the sacrament, Anointing of the Sick. We as family members were able to participate in giving Dad an individual blessing. It was very moving.

On Wednesday he was mostly unresponsive except for exclamations of “help, help, help” He breathing was labored. We gave him comfort medicine, lorazepam and morphine, at regular intervals. Yesterday was Thursday. I worked in the morning and went over to the house at about noon. Dad’s breathing had become even more shallow. He was struggling.

Steve had called hospice. Kim, the nurse who had originally assessed Dad, came to the house about 45 minutes after I got to the house. Steve had gone home to rest. Kim examined Dad. She said that his breathing pattern was typical for transition. During the evaluation, Dad’s coloring got worse. He was even more pale and ashen. Then there were long periods between his breaths. Kim told me that his death was close. I called Mom into the room.

Kim held Dad’s head and stroked it. I rubbed Dad’s shoulder. Mom held his hand. Mom and I sang, Amazing Grace. Dad took his last breath a few minutes later.

Kim had tears in her eyes. She hugged us both. We thanked her. How grateful we were for her guidance. It helped us be there for Dad.

Peace is not an on-off switch. Dad had moments of peace even in the suffering. He asked for ice cream. He told Mom that she was his “first love”. That was two days before his death. Yes, he was suffering, but to rise above that to ask for a simple summer pleasure and to profess love? That means something. It means a lot.

My Dad was surrounded by love when he died. He had a peaceful death at the very last.

“Hmm. I want to do something relaxing. Hey, I have a gift certificate to the spa!”

Those were my thoughts a couple of weeks ago. I called the spa and asked if they had any openings for a massage the next day. They did, I made the appointment, and the massage was wonderful and almost completely covered by the gift certificate.

This anecdote would mildly pleasant though not very interesting if it weren’t for one thing. I’d been carrying that gift certificate in my purse for about ten years. According to Washington State law, gift certificates never expire. As long as they don’t get destroyed and the business is still operating, one can use a gift certificate at any time.

In many ways, this is a wonderful thing. Human beings, however, have a funny habit. We tend not to do something that is not part of our daily routine if there’s no built in time frame. Even stuff we want to do.

So what made me use that gift certificate?

If I had to guess it is because current stressful events in my life have upped my motivation to take care of myself. I’ve been providing more support to my parents, which takes time and energy.

My mom recently worried aloud that the support that I am giving them is “too much” for me given my work responsibilities and the time I devote to staying healthy. I told her, “Mom, I want to help you and Dad. It is a priority.”

My dad said something similar. I related to him how frustrating and powerless friends of mine feel because they would like to help their ill parents but live too far away to help as much as they like to. I feel lucky to live nearby. I am also lucky that their other five children, my brothers, live relatively near by and help, too.

Every living thing expires, eventually, and time ever moves forward.  Nonetheless,  each day contains almost countless opportunities. I am working to be mindful of these opportunities, opportunities for exercise and meditation, spending time with my family, and making art. Despite the pain and sorrow of this time, there is also balance and most of all, there is love.

There are a lot of “what not to say” to a cancer patient lists.  Although I agree with the intent, the lists rub me the wrong way. There’s nothing in them that suggests alternative, supportive behavior, and that’s one of the reasons that many people don’t respond well to people with cancer. Cancer is scary and if saying or doing anything could be on the “don’t list”, responding appropriately although not impossible, is very difficult. There’s also the issue that people are individuals and what may be supportive to one person may not be to another or even to the same person, what might be supportive at one time may not be supportive at another time.

A better version of the list was the “comfort in/dump out” diagram, first published in the LA Times in 2013. The diagram consists of concentric circles in which the person with cancer is in the center, as the person most impacted by the illness. It was a pretty good approach, much better than a “don’t” list though some people took it as license for the person at the center of the diagram to be as nasty as they want to be to everyone in the larger circles while expecting support from all of those people. I don’t blame the author for that because I think it is a misinterpretation of the diagram. An issue I have with it, however, is that for some of us, we are not able to put ourselves in the middle. For example, when I was diagnosed with breast cancer in 2012, I had a 13-year-old daughter. I did very little “dumping out” at her and expected very little “comfort in” from her. I was still the mother of a child, a child who was dealing with her mother having cancer.  The parent-child relationship, at this stage, is not reciprocal. Parents give more, kids give less. To flip it around is not good for a child’s development.

My daughter lives away now at college, which has made self-care easier for me. However, my 85-year-old dad has been quite ill with an increasing list of debilitating ailments. He now has more physicians than me and has been hospitalized twice since November. This is the stage of the parent-child relationship when the child needs to step up on giving. I also have five brothers who live locally so they help, too. And my mom takes excellent care of Dad.

I had two heart attacks less than a year ago. I had breast cancer 6 years ago. Sometimes I can be at the center of the circle, sometimes not. Mostly, my dad is at the center, and to be truthful, he does his fair share of “dump out”. But also has times of incredible sweetness and gratitude, which is a support to all of this caregivers. My mom, who is on the receiving end of 99% of the “dump out”, is sometimes impatient, but mostly bordering on sainthood. The grouchiness and displaced anger do wear on her, as does responding to my dad’s frequent calls for help in the middle of the night. We’ve gotten impatient and frustrated with Dad, on occasion. He gets fixed on money, not wanting to spend it, even on things that would make life a lot easier. And then there were all of those years that he refused to get the earlier signs of illness checked out despite getting referrals from his primary care physician to do so. He was clearly at the center of the circle, but he wasn’t making good decisions. There was perhaps some “dump-in” that occurred during this period, which lasted three years as we watched Dad go from a man in his early 80’s who could still hike several miles to shuffling, to barely being able to walk, to barely being able to walk with a walker.

Life is messy. Sometimes we dump out. Sometimes we dump in. Sometimes we just don’t know what to say or do in sad and scary situations. Everyone is at the center of the circle at one time or another. Sometimes the people who say or do “the wrong things” are in the center of a DIFFERENT circle. This is a fluid process. There is no prescription for being a decent person.

In the process of accepting all of this, perhaps we can learn to do better and to be forgiving for the times we fail.

Part of being a testing psychologist is explaining results to worried parents. Parenting hits us at the tenderest parts of our heart. Recently, I was providing feedback on testing I had done with a bright 7-year-old with severe learning disabilities. There were parts of testing that were poignant, for example, the 7 minutes and 5 seconds it took her to read a 92-word-long story. She worked so hard only to make 75 errors. Imagine what this child’s school day must be like. Her parents were naturally eager to learn what they could do to support literacy development. They also had questions about how to boost their child’s self-esteem. Then I got a question I’d not previously heard in the 23+ years I have been giving this kind of feedback to parents. “How can we get her to believe that she can do anything?”

As an expert, I know that the speed of my response is important. Answering too quickly gives the impression (sometimes accurately) of not having listened. Answering too slowly gives the impression (sometimes accurately) of not know what I am talking about. In this case, I had a strong gut feeling about the answer but had not gotten my reasoning quite together. So I gave a response that gave me time to think and also framed my thoughts, “I’m not sure that is a healthy goal.”

I went on to recommend focusing on the present, namely, helping their daughter develop academic skills so that she would experience more success. Then I talked about the importance of self-awareness of strengths and weaknesses in success. I gave myself as an example. I’ve never thought I could do anything but I thought there was a lot I could do and that helped me be successful. It was a good enough response, I think, but my thinking was unfinished. I have been mulling this over.

The kids I see in my practice, by and large, have a great deal of difficulty being successful in school. They experience failure over and over. People often try to encourage them by saying, “You can do anything you want to!”  The implication is that each of us has all of the ingredients we need to fulfill infinite possibilities.

What does it mean if you can “do anything you want to do” and you still fail?

“You don’t care.”
“You are lazy.”
“You just need to try harder.”

Those are some of the top reasons that I hear from parents, teachers, and the students, themselves. It occurs to me that this is the same fallacy of the American Dream. We can all achieve economic success if we try hard enough. People who are not economically successful just are lazy, not trying, and don’t care.

These are also the punishing expectations for those of us who become physically ill. There’s a slightly different spin but it all boils down to, “your fault”.

“You didn’t eat right.”
“You didn’t exercise right.”
“You have a bad attitude.”

None of this is true. Effort, attitude, and motivation can make a difference in coping with adversity but they do not make ALL of the difference.

Believing in a just world can help us feel more comfortable and in greater control. But it is not reality and delusions can be destructive to those who are in need of the most understanding and acceptance.

We can do a lot of things, every one of us. That’s the reality and beauty of humanity. That encourages me. It works against the tyranny of perfectionism and the self-delusion of a “just world” view.

I can’t reach for things if my feet aren’t firmly planted on the ground.

Reality. Let’s do that.

 

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.

My great-grandfathers on my mom’s side both immigrated from northern Italy to Washington state around the turn of the 20th century. Like many immigrants before and after them, they worked dirty, dangerous, and low-paying jobs. In their cases, they worked in coal mines in Renton and Black Diamond. Although they may have had dreams of riches and the easy life before they immigrated, they soon toiled as an investment for the future of their families.

I was reminded of my Italian ancestors while having a lovely weekend away with my husband. John had arranged for this as a birthday present to me. We stayed at my brother and sister-in-law’s condo near Rosalyn, WA, in the Central Cascades. Rosalyn was a coal-mining town back when my great-grandparents were mining.

It was foggy for most of the weekend, creating an other-worldly black-and-white environment. Fog can be foreboding. I found myself, instead, to be nestled in obscurity. The world can be far too bright and more subtle beauty can be missed. John and I took a walk down an old mining road, now used as a hiking trail. It was breath-taking and my photo only hints at this.

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This patch of serenity in 2017 is also the site of the worst coalmine disaster in Washington state history. It was 1892 and an explosion and fire killed 45 men. Can you imagine what that was like for a turn-of-the century mining town in rural Washington with a population of just over 1000 people? Devastating.

I think of my ancestors, like these men and their families, who were primarily new immigrants from European countries, who the hardships of the immigrant life, the Great Depression, and two world wars.

In the years of my mindfulness practice, I have gained a perspective of deepened connection between humanity. There is a thread that runs through us across distance and time.  I have been struggling with discouragement in the past few weeks. Some of it, I suspect is anniversary grief from the last presidential election compounded by the new assault of scary news each day. I am also adjusting to finishing my cardiac rehab, which was a wonderful structure of support both physical and emotional. Then there is getting to a new normal with my dad’s health and support needs.

This is not working the mines or dealing with wars or the Great Depression. But it does feel that we are adjusting to some kind of New World. And for many in our country and world, it really is working the mines, living through the Depression, and experiencing war, all at once.

My ancestors were strong, resilient people on both sides of my family. (Perhaps, one day, I will tell my father’s story.) Today, I draw on their strength and I see light.

 

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It’s Breast Cancer Awareness month. I don’t think I’ve blogged about it in years. I typically try, unsuccessfully, to ignore it. The superficiality of some of the campaigns bothers me. But if I am honest, I also don’t share the intensity of the anger some people still feel about it. This is my 6th October since my breast cancer diagnosis in 2012. There has been a dramatic decrease in pink ribbons and associated nonsense since that time. There have been high profile works of film, journalism, and even coverage on late night comedy shows that have revealed the money farm that developed to exploit and sexual breast cancer for profit. Yes, it is still a problem but progress is progress. Progress is to be celebrated. So I celebrate the pink reduction.

Between the “think positive” crowd to the “everything about cancer sucks” crowd, I feel increasingly on my own. Although I tend to have more in common with the “everything about cancer sucks” crowd, I do worry about my not-very-tightly-held secret. I’m going out on a limb here and admitting what my blogging buddies know already: Not EVERYTHING about having breast cancer sucked. There were aspects of my experience that exposed me to what is best about humanity. I was lucky enough to be very well cared for by my healthcare team, by my family, and by my friends. I learned some things about myself in the process of illness that have become what I hope to be, lifelong lessons and happier ways of being.

I was at cardiac rehab yesterday and one of the exercise physiologists commented, “You have such a positive attitude. Have you always been this way or is this new?” I told her that I was lucky in that I am a naturally upbeat and resilient person but also that I have done much to nurture these qualities since I was diagnosed with breast cancer in 2012. I also recently read my cardiologist report from the Mayo Clinic. In it, I am described as “a very pleasant psychologist.”

I don’t have to have a positive attitude and I don’t have to be “very pleasant”. But these qualities are helpful to me as I live my life, day by day. They also help me face some hard possibilities, most notably, the fact that I may not live as long as I thought I would. I had breast cancer at 46 and two heart attacks at age 51. I had few or no risk factors for either condition. Breast cancer can recur and I’m really not sure what the risk of recurrence or of developing metastatic cancer is. (I know there is the 20-30% estimate but I find no description of how it was arrived at in the original source materials, which concerns me.) There is a chance that I will have another SCAD event, too. However, there’s very little research on SCAD-related heart attacks, which makes it hard to know. The best estimate at this point is 20% recurrence over 10 years, but that is on a sample of only about 150 women. Further, since the cause/s of SCAD are not understood, there are no markers that can be measured to estimate my risk.

However, unlike breast cancer, stress is modifiable risk factor for cardiac diseases, including SCAD. Consequently, I continue to work on that through meditation, exercise, and through working a reduced work load. Cardiac rehab is going well. I just did my 60 day review. I am stronger and reassured that I am pushing my progress at the right rate. I have also made friends and being cared for by a group of excellent nurses and exercise physiologist. Even if these actions don’t extend my life, they make my day to day life much more peaceful, joyful, and balanced.

Awareness is synonymous with mindfulness. It is the state of being aware of reality, as it is. The use of the term “awareness” for October is ironic in the context of breast cancer because it is used for some dishonest purposes. Not every thing about my breast cancer is bad. Not every thing about my heart disease is bad. They are parts of my life, which include joy, pain, peace, anxiety, and all of the other experiences and feelings of my reality.

Here is a phrase I learned from Sharda Rogell, my dharma teacher at Spirit Rock Retreat Center. It is a phrase about equanimity:

“May my heart be big enough to hold the joys and sorrows without being overwhelmed.”

I’m out on a limb. I think in this moment, it will hold me.

Peace, friends.

 

After my heart attacks last spring, I signed up for a 5-day-long residential mindfulness retreat at Spirit Rock Retreat Center in Northern California. I’d never attended a residential retreat and I thought it might be a good way to increase and deepen my mindfulness practice. Further, since the retreat is mostly silent, I thought it would give me a chance to be alone with myself to see how I am doing with the whole heart attack thing. Other than one day of feeling sad and weepy, I really haven’t had a strong grief reaction. The two years I was going through breast cancer treatment were different. I had more days of “what the Hell is going on?” Another issue I thought would be good to process is my daughter’s moving out of the house for college.  Other than the first two days she was gone, I haven’t felt sad about her absence. I do worry some about how she is managing this big transition but I am mostly happy and excited for her.

After months of waiting, the retreat took place last week. I had already been on my own for a few days, having flown down early to visit family in the Bay Area. I explored San Francisco and had a lovely afternoon with my niece, Tricia, who has recently moved to Silicon Valley to start a tech company. She has a Ph.D. in neuroscience from NYU and has developed a technology with educational and mental health applications. To make a long story short, if she is successful, her work will be revolutionary. I also visited with my husband’s family in Lafayette, CA. We took a walk on the water and had a nice dinner together. My nieces and nephew have grown up quite a lot since I last saw them and I met one of them for the first time. They were bright children and teens. The conversation was lively.

The retreat started last Tuesday afternoon. I arrived with minor trepidation. Could I be silent for five days? Could I stay awake for the day’s scheduled activities, from 6:30 am to 9:30 pm? (Heart attacks have a way of pooping one out.) Would I have time to do my cardiac rehab exercises? Mostly, though, I was excited. I felt ready to challenge myself with a retreat.

The name of the retreat was “Empty Mind, Full Heart” and it was taught by Sharda Rogell, who has been teaching insight meditation since 1985. She is a wonderful teacher and kind person. The first full day of the retreat started at 6 am with the chiming of a bell through the hall outside of my room. I dressed quickly and walked out into the dark morning, pausing to look at the bright array of stars above. Once in the meditation room, I knelt on my cushion and closed my eyes. 45 minutes later, Sharda struck a singing bowl three times, and it was time to walk to the dining hall for breakfast. The rest of the schedule was pretty much as follows: sitting meditation, walking meditation, morning lesson and instruction with meditation, walking meditation, lunch, doing dishes in the kitchen as my work meditation, sitting meditation, walking meditation, dharma talk, dinner, sitting meditation, walking meditation, guided meditation, sitting meditation, and bedtime at 9:30 pm.

I may have added a few extra meditations but I will let you know that by 6:30 pm, my body ached and I was exhausted. I sat in meditation basically finding fancy reasons to get out of the rest of the meditations for the day so I could go to bed early. I thought, “I’m not going to make it until 9:30 pm!” I reminded myself that it wasn’t 9:30 pm, redirected myself to the meditation and took things one meditation at a time. The soreness was another issue. Then I realized that there were chairs available and that I wouldn’t be a huge failure if I meditated in a chair rather than on a nifty cushion that was taking away my will to live. I sat in the chair and was able to make it through the rest of the night, one meditation session at a time.

By the next day, Sharda helped us prioritize the sittings, telling us which of them were optional and which of them were not. (I was not the only one who had switched to a chair.) I took three naps that day, did all of the mandatory activities, and took two hikes up into the hills surrounding the retreat center. I felt so much better. By the next day, I could do more meditations and I kept taking walks. I did have more struggles during the retreat with meditation. Other people were, as well. For some, meditating brought up emotional struggles. For others, like me, we tended to make time pass by fantasizing or drifting off. Also, sitting still is really hard!

Meanwhile, Northern California was and continues to be, on fire. As the winds shifted, our air quality changed. One day, I could see the ash in the air. Other days were clear with blue skies. It was a reminder of how life can change in an instant.

I left the retreat feeling full of experience, of connection with the other people at the retreat center, and with a heart holding joy and heart break. I also left with my feet firmly on the ground. My heart can do a lot.

As always,

Peace

San Francisco

 

 

 

 

 

 

 

 

 

 

 

Spirit Rock Retreat Center, Woodacre, CA

 

 

 

 

 

 

 

 

 

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.

Peace friends,

Elizabeth

Heart Sisters

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George Lakoff

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).

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