Archives for posts with tag: mindfulness

Last week, part of my family and I cruised to Alaska and back. It was my brother, John’s idea. My mom has long wanted to go to Alaska and my dad did not want to go while he was alive. So on 8/31, the five of us, John, his wife, my John, and Mom, boarded a big cruise ship in Seattle, bound for Juneau, Skagway, Glacier Bay, Ketchikan, and Victoria, BC.

Going on a cruise is not something I’m naturally inclined to do. It sounds like a lot of time on a boat with not a lot of time to explore the land. But this was a way for a group of us to travel and an Alaska cruise is rather scenic from the boat. Like Mom, I had not been to Alaska so I was very excited for the trip, as well.

I was less excited for the gambling, games, shows, formal nights, and selling (auctions, jewelry shows, etc) on the cruise. Nonetheless, some things sounded like they might possibly be a little fun, so I did some of them. And I didn’t just watch, I participated. I found that team trivia games were silly but really fun, even if it meant doing the YMCA dance in front of an audience. (Actually, that was extra fun.) It was fun to dress up for formal nights. Not having to cook for a week was really fun. I managed to eat well without blowing my fitness plan. Speaking of fitness, the treadmills faced the ocean and nearly every time I worked out, which was almost daily, I saw humpback whales.

My mom sang karaoke. Even with what my friend, Charlie, aptly described as “cheesy accompaniment”, she sang like the accomplished singer of 79 years that she is. She got some nice compliments from other people on the cruise, even a couple of days later, when we were in Victoria, BC. A woman gave her a hug, “You have a gift!” Finally, when given the invitation to join a group of dancers from the Tlingit, Haida, and Tsimshian tribes, I accepted it. It was a lovely experience to connect with other people, sharing their culture. One of the dancers was a one-year-old, Kayla. She was a little marvel. Not only did she sing, dance, and play a drum (with a few breaks to act her age), but her mother explained to us that Kayla is an accomplished learner of Tlingit, Haida, and Tsimshian.

In addition to singing, which is something my mom does every week at church, she had a return to hiking. My parents were avid hikers and campers until my dad’s Parkinson’s disease got the better of his mobility and balance, when he was about 81. When we were at Mendenhall Glacier, located on the edge of Tongass National Forest, near Juneau, Mom decided that she wanted to do the 2 mile hike to Nugget Falls. John had suggested it but misread the sign, thinking it was a .3 mile walk. I protested, he didn’t get my concern so I dropped it. I didn’t think Mom could do it but she wanted to try and I said to myself, “Shut your pie hole. Mom is the captain of her own ship.” It took awhile but we all made it there in back despite the steady rain. Mom had really missed nature walks and was thrilled. I noticed that she was walking faster the next morning and she explained, “I got broken in.”

A consequence of my mindfulness practice is that I enjoy things more because I worry less about things that are not really important. I used to avoid doing things that I wanted to do because I was wrapped up in self-consciousness. I was holding myself from participation when the worst that could happen was embarrassment.

Throughout the cruise I thought to myself, “carpe diem”. I had a fantastic time and I was gobsmacked by the beauty. The rain did not ruin Juneau. We had a good time, anyway. Glacier Bay National Park/Reserve had stunningly sunny weather. It was like being in another world. But I had gotten there starting with the Puget Sound bordering my own city, following the Salish Sea and the Pacific Ocean north to Glacier Bay. I felt connected to that beautiful land by a common thread of saltwater. I was thrilled by the awe of the fellow passengers. People were stunned and gobsmacked by the beauty, even the man who wore his MAGA hat each day. I saw him sitting at a table for hours, watching the sea and the landscape with his binoculars. It reminded me of our share human connection. Just that reminder, alone, gave me some comfort in these challenging times.

As I’ve written before, I sometimes wish I could coast or cruise through life. It is just a fantasy. But cruises, literally and figuratively, happen. I intend to participate.

Peace, friends.

-Elizabeth

Mom brought Dad on the cruise so he wouldn’t miss out.

Juneau: Nugget Falls and Mendenhall Glacier. We saw lots of orca and humpbacks on our whale watching tour that day, too, but I tend to just watch instead of take photos with animals.

 

Mom and I looking snazzy for one of the formal nights. (My blogging friends may recognize my dress from my 25th wedding anniversary from four years ago. Like the comedian Tiffany Haddish and her white formal, I will wear a good dress every time the opportunity presents itself.) Note: I’m not sure why this photo is so big. Oh well, fun with technology.

Skagway and Haines. We saw four bear! For extra credit, try to spot the brown bear who is blending in with her surrounding.

Was Glacier Bay really this beautiful? No, it was one million times prettier!

DSC08398DSC08427DSC08458DSC08497

Saxman Village, Ketchikan.

DSC08510DSC08522DSC08529DSC08530

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?”

Much love and peace to all of you,

Elizabeth

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.

Peace to you, friends.

 

DSC07165DSC07174DSC07276DSC07455DSC07462DSC07468DSC07477DSC07480DSC07496DSC07508DSC07509

Today, John and I went hiking on the Nisqually Delta, where the Nisqually River runs into the Puget Sound. This is a hike that my parents have taken and I recall my dad telling me about it.

It is muddy. The water is brackish. It is winter in Western Washington. The ground and the plants are dark. The sky is changeable from grays to white to peeks of blue.

This is a popular area. We see many people, mostly families with kids and gray-haired married couples. The trail is flat and wide. There are short and medium length trails. It is perfect for the young and the old. I see my past as a child learning to hike, as a mother teaching her daughter to hike, and hopefully, my future, continuing to hike with my beloved husband for many years to come.

It seems like an in-between world, between solid and liquid, earth and sky, salt and freshwater, youth and old age. I see death, in the silver tree snags that stick out from the mud. These trees will never get leaves again. I see dormancy in the live but leafless trees on the shore and in the brown bushes in and around the water.

I also, of course, notice a lot of life, when I get quiet and still. There are so many birds. Honking geese, so many kinds of ducks, gulls, waders, and those little bitty beach birds that scurry along the shore like mice when they are not flying in tight formation just over the water’s surface. Every once in awhile, I hear a frog, sounding like a cross between an animal and a one-stringed musical instrument.

Every life is in-between. It is in some moments that we are fully aware of this. Today, I see it. I hear it. I feel it. It is poignant, hopeful, sad, and sweet.

This slideshow requires JavaScript.

 

 

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.

Art, Science, Heart ❥

journals of a mature student nurse

Heart Sisters

For women living with heart disease

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).

KomenWatch

Keeping our eyes and ears open.....

Life in a Wheelchair

You never think it could happen to you!

4 Times and Counting

Confessions Of A 4 Time Breast Cancer Survivor

Nancy's Point

A blog about breast cancer, loss & survivorship

After Twenty Years Cancer Research Blog

Exploring progress in cancer research from the patient perspective.

My Eyes Are Up Here

My life is not just about my chest, despite rumblings to the contrary.

Woman in the Hat

Cancer to Wellness in 1,038,769 Easy Steps!

SeasonedSistah2

Today is Better Than Yesterday

Telling Knots

About 30% of people diagnosed with breast cancer at any stage will develop distal metastasis. I am one.

The Pink Underbelly

A day in the life of a sassy Texas girl dealing with breast cancer and its messy aftermath

The Asymmetry of Matter

Qui vivra verra.

Fab 4th and 5th Grade

Teaching readers, writers, and thinkers

Journeying Beyond Breast Cancer

making sense of the breast cancer experience together

Telling Knots

About 30% of people diagnosed with breast cancer at any stage will develop distal metastasis. I am one.

Entering a World of Pink

a male breast cancer blog

Luminous Blue

a mother's and daughter's journey with transformation, cancer, death and LOVE

Fierce is the New Pink

Run to the Bear!

The Sarcastic Boob

Determined to Manage Breast Cancer with the Same Level of Sarcasm with which I Manage Everything Else

FEC-THis

Life after a tango with death & its best friend cancer