Archives for category: Mindfulness

Beyond Dos and Don’ts

March 31, 2018 //

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.

Tags Breast Cancer, caregiving, mindfulness, parents and children

Categories Breast cancer, Mindfulness

The Stories We Tell

February 12, 2018 //

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.

Tags Breast Cancer, mindfulness, SCAD

Categories Breast cancer, Mindfulness

Big Five

May 24, 2017 //

Five years ago today I was told, “You have cancer.” I had been looking forward to the possibility of this 5 year mark, holding at “no evidence of disease.” I had a mammogram recently that was normal. So, I am at “no evidence of disease”. Unsurprisingly, having had two heart attacks in the past four weeks has dampened the party a little bit.

Nonetheless, I am going to give my 5-years as a survivor its well-earned appreciation. There were a lot of highs and lows packed into the last five years. I’ve written about nearly every one of them in this blog, which I started immediately after my diagnosis. My blog turns five years-old today, too.

When I chose the title for my blog, “My Eyes are Up Here”, in part, I was just trying to be clever. But I was also communicating the fullness of my life. When I got breast cancer, the rest of my life didn’t just stop. At times this was a great burden. At other times, it was the best thing about my life.

I have learned in these five years that I am not completely defined by my cancer. I am also not completely defined by my heart problems.

My eyes are still up here.

Tags Breast Cancer, cancerversary, heart attack

Categories Breast cancer, Mindfulness

Lots of healing, many wounds

May 11, 2017 //

I have been working half-time this week, following what turned out to be two small heart attacks. As I wrote previously, the current working diagnosis is Spontaneous Coronary Artery Dissection (SCAD). It is infrequently diagnosed and mostly seen in women in their 40’s to 50’s, physically fit, and with few or no heart attack risk factors. The cause is unknown. It is possible for dissections to heal so I am taking a number of medications to improve my heart functioning as well as to prevent the formation of blood clots. I have follow-up tests and lots to learn about heart functioning.

This was a shock, to understate things. Just two months ago, my husband and I were in Southeast Asia. We were walking through ruins in extremely hot conditions, just as we’d done when we were in our 20’s, on our honeymoon in Egypt during the summer. During the vacation, I was really pleased by the health of my body and what I was capable of doing. I thought of trips that John and I could take in the future.

Yesterday, I had a mammogram. It was normal. My 5 year “no evidence of disease” anniversary is in two weeks. This is big news that has been upstaged by my heart. In the past, I have compared cancer to a natural disaster. It can happen to anyone, no matter how virtuous. I am re-thinking that metaphor, at least in my experience. My breast cancer was more like a failed safety inspection. The treatment was to prevent a disaster. One of the harder aspects of breast cancer treatment is that it made me feel sick when I hadn’t felt sick. The heart attack was like a natural disaster, a small earthquake followed by an aftershock. They caused damage to my heart. The medications I am taking now actually seem to be making me feel better.

Today, I have no work responsibilities or health care appointments. I am taking care of myself. I am listening to my body. Yesterday, it told me that taking a walk with a friend was a good idea and it was. Today, my body told me to sleep in. It has also told me to spend a lot of time resting on the couch. Finally, it has told me to take pause and check in with my thoughts and feelings.

One thought that passed my mind was, “I’m still healing from the cancer and now I have heart problems.” I felt the urge to cry “foul!” (And it would have been fine if I had.) My next realization is that I have always been healing from multiple wounds.

We are all healing from multiple wounds.

Be kind to yourselves, friends.

Don’t turn away. Keep your gaze on the bandaged place. That’s where the light enters you.
-Jalaluddin Rumi

Tags Breast Cancer, healing, mindfulness, Spontaneous Coronary Artery Dissection

Categories Breast cancer, Mindfulness

Little Bowls

May 7, 2017 //

As many of you know, I have been taking pottery classes for the last year or so. I typically throw (make forms using a pottery wheel), rather than hand build. Learning to use a pottery wheel is challenging. I am still learning how to center the clay on the wheel head, consistently. There are all of the steps to remember. Even if one carries out the steps, there are lots of variables that impact how fast the wheel should go at each step, the amount of water that should be added during throwing, the amount of pressure applied by each hand, the positioning of hands and fingers, and the speed at which the hands and fingers should move up the clay. On top of that, the type, size, and hardness of the clay is another variable to be considered. Finally, there are shaping tools that can be use. There seem to be about 5 million pottery tools in existence. One type of tool can have so many variations. People who are very experienced know not only how to use the tools, which requires finesse, but how to select the best tool.

When I first started throwing, nothing really turned out. That is normal, I am not being overly self-critical. Then every once in a while something would turn out and I couldn’t figure out what I’d done differently. I like bowls, so I threw a lot of bowls. I decided I wanted to be able to throw a salad bowl. Clay forms shrink about 7% from the time they are thrown to the final firing so the initial throwing is of a larger than desired piece. For me, a salad bowl is a pretty big bowl, and it certainly was when I was a beginner. Nonetheless, I was inspired by the challenge to throw “a big bowl”.

I had enough success with big bowls to keep me going for awhile. I have to say objectively, I have big bowl-making potential. There were a lot of flops, though, not to mention many bowls that cracked in the kiln. None of my bowls were made with an intention to make anything but a bowl. I do not yet have the skills to plan size and shape ahead of time. Okay, more accurately, I do not yet have the skills to implement the size, design, thickness, etc of the bowl I have planned in my head.

One quarter, after thinking I would just keep realizing my “big bowl potential”, I made flop after flop. I made bowls that were of uneven thickness or that were not round, or that were not level on the rim. I made bowls that looked so so promising as I pulled up the sides to make them thinner and thinner, only to collapse in on themselves on the wheel. More than an hour’s work and all I could show for it was a wet mess on the wheel and sore throwing muscles.

All through the process, I read about bowl-making. I watched Youtube videos on “big bowls”. I watched my teacher’s bowl-making demonstrations, which she typically did once per quarter. Each time, I learned something new and tried to apply it to my big bowl-making. Then I gave in to the idea that had been lurking in the back of my head, which was to make little bowls. They are faster and easier to make. I could focus on my technique. I started making little bowls and my bowls started getting more refined.

Last week, I met with my psychologist, Rebecca. It was the first time I’d seen her in a while. As I mentioned last week, I’ve been dealing with some challenges related to stress and my heart health. I brought Rebecca two of my little bowls as a gift. We had a productive session. I have some work to do in my life. Physically, my healing from my cardiac event is not an linear as I’d like. There are fits and starts. My diagnosis is undergoing refinement as my physicians are gaining more information. The current working diagnosis is Spontaneous Coronary Artery Dissection (SCAD) a rare condition, caused by a tear in an artery wall. Some blood flow is diverted to outside of the artery wall, lowering blood flow. Further, blood that gets outside of the artery wall is more likely to clot, which can press on the artery, narrowing it. SCAD is present in men and women, however, when present in women, they tend to be in their 40’s and 50’s, physically fit, and with low risk of heart disease. What causes these tears is unknown.

My prognosis is still good but there is uncertainty as to the length and course of my recovery in the upcoming weeks. I have resumed a practice I started right after my breast cancer diagnosis, five years ago, which is to meditate about 10-15 minutes per day. I’ve had to temporarily cut back on my walking until my heart heals so each day I do the little bit that I can do.

Tags Breast Cancer, mindfulness meditation, Spontaneous Coronary Artery Dissection, stress

Categories Breast cancer, Mindfulness

Hollow

December 22, 2016 //

My daughter and husband are out tonight. I decided to watch something on television that might only appeal to me. I used to occasionally watch, The Gilmore Girls, a mother/daughter drama-comedy with very fast-paced dialogue. They brought the show back after many years for another season. I decided to watch the first episode.

The Gilmore Girls is a smartly written show with appealing lead actors. In other words, it is not a bad show. That’s not the point of this post. The opening scene of the show took place outside, in the town square. The first thing I noticed is that everyone in this town is white. The mother and daughter characters were drinking coffee from paper cups that were obviously empty. I realize that this is a common use of props in television and film. Without fail, I notice that the coffee cup is empty. I can tell by the way they handle it! There’s no weight in the cup! Why can’t they just fill it with water or something?

The all white town, then the empty cup. Next, they pass the sign for the town, “Stars Hollow”. Really? That’s hollow, too? It’s not a bad show but really, the first 10 minutes were too symbolic for me.

Life is full. If I take a drink of life, the weigh of the cup registers in my hand. It has flavors, colors, aromas, and sounds galore.

The fullness of life is a big part of what makes life so amazing.

A hollow cup is easy to understand. It is easy to master. There are no surprises.

But what, precisely is the point?

Yes, I am a bit agitated today but as always,

Peace, friends.

Tags diversity, mindfulness

Categories Mindfulness

Bearing it all

December 17, 2016 //

I attended a sitting meditation two weeks ago. The instructor read a poem at the beginning. There was a phrase in the poem that has stuck with me, “bearing reality.” Mindfulness is about bearing reality, bearing the way things are right at this moment. Daily, there are difficult realities, especially at this time. I keep reminding myself that today’s reality is not necessarily tomorrow’s reality.

But this is when it gets even more difficult. The joy of today can give way to heartache tomorrow. The fears of today can give rise to positive action. This is the bearing of possibility, the what could’s. As a psychologist and as someone who practices mindfulness, I know that living in the future is tricky business. It is important to visit future possibilities in order to plan. However, the future, though a good place to visit, is no where to live.

The challenge, in our country, in our world right now is to bear it all. We must bear reality and possibility in balance. As with “baring it all”, “bearing it all” leaves us vulnerable. Right now I am considering my options for formal activism. I have done individual acts but I have not become a member of a group effort. I have been hanging out on the edges observing possible groups. There are a lot of them, by the way. Some of you may belong to one or more of what must be one of hundreds of resistance groups across the country. Since many of these groups cropped up after the election, there is an understandable amount of disorganization and flux. I am a practical person. I don’t want a “feel good” group. I want to be part of a “do good” group. I want to be effective. There’s a gamble no matter what I choose.

Today, I am bearing reality. I am weighing my options. I am bearing possibility. These are scary and exciting times, these times of bearing it all.

Tags activism, civil rights, mindfulness, peace

Categories Mindfulness

What’s your sign?

December 7, 2016 //

Part of my mindfulness practice is to live my life with intention. I have a strong intention right now to be more of a social activist because 1) this is no time in the U.S. to feel helpless and 2) I might be able to offer something positive, however small, to the world. Also, following up on my last post, I have made a point of being more conspicuous. I have been a pretty outspoken person since about 5th grade when I first remember my teacher commenting (not negatively) about my feminism.

I find myself now, however, not just being outspoken about my beliefs but also being outspoken about my behavior and linking it explicitly to my political activism. Honestly, the U.S. presidential election initially left me feeling betrayed by a substantial proportion of my fellow citizens. When I left my house the morning after the election, I made a concerted effort to count every act of kindness that was directed toward me. It helped me feel safer.

I have continued to do this but I have also tried hard to do positive works. And since I am putting this within the context of social activism, I have let people on social media know about what I am doing and why. I include charitable contributions, phone calls to congress, and small acts of kindness that I do with intention of creating loving social connection. Announcing my actions is my version of carrying a sign in a protest march. What if I decided to protest in the park, by myself, without a sign and without saying anything? How would anyone know what I was trying to do. I am labeling my action. Others might feel inspired to do similar things. I know that I have felt inspired by others. I also know that when I announce my intentions in public, I am more likely to follow through.

Objective labeling is a big part of observing and being mindful. I have learned the practice of labeling my mental behaviors during meditation. When my thoughts are judgmental, I can label it by saying, “That’s my judgmental mind making judgements”. I have been taught that this is a way to stop the brain puzzles that keep me out of the moment and I have found it to be an effective technique. To be aware of myself makes it easier for me to act with intention and to respond to life instead of simply reacting to it. Sometimes I have to make a sign to myself to understand myself better.

I think of this as a practice of using signs, some turned out to the world and others directed inwardly. Both are extremely useful to me.

What’s your sign?

Peace to you, friends

Tags mindfulness, social activism

Categories Mindfulness

My super power, my ass

November 28, 2016 //

Between 2012 and 2014, I had 9 surgeries; three of them were to remove cancer and the other six were to patch up the damage. Not all of my surgeries were major, but nonetheless, I spent a lot of time in a hospital gown, with my ass hanging out. I am outgoing in many ways and have been for the most of my life. However, I also spent the first 46 years of my life being fairly modest when it came to revealing my body. For example, I did not wear a swimsuit for years, because I was very self-conscious. Medical visits were another thing. I didn’t mind that so much. But when it comes to surgery, it’s different. My body was on display to a parade of people whom I did not know. Even worse, you know how I am a child psychologist and see patients and their parents for a living? Some parents work at hospitals. My hospital. To see people I knew from the community, in my role as an expert and a leader, with my ass hanging out, could have been mortifying.

Guess what? It was not mortifying. It was merely embarrassing and not gravely so. This is because, I used my mindfulness practices to stay in the present and to try to keep those thoughts that make a stressful circumstance into a mortifying one, at bay. For example, instead of focusing on how embarrassed I was and what must a person from the community think of me, I focused on her kind treatment of me. Further, the more times I was “exposed” both literally and figuratively, the less difficult it became. It was less and less embarrassing.

I feel grateful for the way I was able to cope with this. It may have been quite different earlier in my life. One of the things this coping taught me is an appreciation for my body and far less embarrassment about it. Any embarrassment I have now about wearing a swimsuit in public is really manageable. It doesn’t keep me from enjoying myself. I don’t worry about my appearance when I encounter people in the community on the days I am not in the office. I am comfortable going around town with no make-up and wearing work-out clothes. If it is raining, you will see me in a rain hat with ear flaps. It’s not cute. It’s functional. It keeps me doing the things I love to do, like taking long walks during every season of the year, which also benefit my physical and mental health. Those things are more important than being cute. I am free to be who I am, even the facets that are not cute, without embarrassment.

I have also noticed a significant decrease in my embarrassment, more generally. I used to get so embarrassed when people sang “Happy Birthday” to me. I felt very self-conscious even though on some level, I enjoyed it. Last Thursday was my 51st birthday. It was also Thanksgiving. Seventeen of my loved ones sang, “Happy Birthday” to me. For the first time in my life, the only feelings I had were purely positive. I felt happy and joyful. I thoroughly enjoyed it, smiling the whole time and being able to make eye contact with my well wishers. What a marvelous power to be able to absorb and appreciate love from my friends and family!

I have been thinking a lot lately about the power of acting in spite of embarrassment or fear. We are in times when this power is of utmost importance. Our country and culture are divided. Oppression and hatred were a problem before and now are more so. I was reading an excellent article, Eight Ways to Stand Up to Hate, published by the University of California-Berkeley’s Greater Good Action. One of the recommended strategies is “practice being conspicuous”. For example, walk around the neighborhood in a funny hat. The goal is to learn to tolerate the discomfort of being conspicuous so when we are in the presence of a stranger in need of help due to hateful acts by others, it will be easier to act and not freeze, the latter of which is a natural response for many.

These are times when it is natural for many of us to try to be careful about everything. To worry. To look for problems in everything. To accept only the perfect solution when none exists. “I don’t want to support x cause because it does not solve every problem.” We need lots of efforts and strategies to make this world a better place. Some of our efforts will only help the tiniest bits. Others will fail.

To fail by not trying is not a way I choose to be.

As always, peace to you friends.

Tags Breast Cancer, mindfulness, stand up against hate

Categories Breast cancer, Mindfulness

Awake and at Ease

November 19, 2016 //

As you can imagine, I am still reeling from the U.S. election results. Like many have written in other blogs, my reaction was much like being told my positive breast cancer biopsy results in May 2012. A major difference is that in the case of my cancer treatment, I felt very well taken care of by competent healthcare providers. I also had relatively clear choices to make.

No, I am not saying that the election was worse than cancer. I actually don’t know. I don’t know what will happen to my country and the world. I don’t know what my health will be like in the future. We just don’t know the future.

A lot of people has commented that the election “woke people up”. I would say that it woke some people up the way hearing a bomb blast would. Others have their eyes open, their sleeves rolled up, and are following a clear purpose and direction.

I am in neither of those groups. I am, however, trying to follow a process in mindfulness, to be awake but at ease. This means observing pain, emotions, and even thoughts in as much of a grounded way as possible. I have had moments of being mindful and at ease since the election. That is not most moments. But I continue to practice my meditation to cultivate compassion, to be aware in the moment, and to be as active and constructive as I can be.

It is tremendously difficult but even in those moments of balance, the results have been tremendous. Those moments provide me with hope.

May I be awake. May I be free from suffering. May I be at ease.

My you be awake. May you be free from suffering. May you be at ease.

Peace.