Tag Archives: compassion

On loss, grief and sticks and stones

Posted on January 27, 2023 | 2 comments

When I was in first grade, my best friend died. I wasn’t old enough to understand what caused her death, only to feel the loss and the gap that her absence created. She wasn’t at her desk at school. She wasn’t on the playground. We didn’t walk home together. She wasn’t riding her bike in the church parking lot after we finished our homework. She was just … gone. This was my first introduction to grief. I learned quickly that people grieve very differently.

Grief can make people sad, angry, mean, depressed, dejected, isolated, frustrated. Grief can make people withdraw from others, or reach out to others for support. Grief can lead to kindness and compassion. Grief you can lead to rejection and hurt.

I had never had much to do with my best friend’s older sister. She was seven years older than we were. For the most part, she just ignored us. That is until after her sister died. Then she noticed me. And that noticing, I understand now, created great pain for her that, unfortunately, for me, led her to be mean.

She wasn’t physically abusive, but she was physically, intimidating and aggressive. She was verbally abusive. Almost every day after school, she would wait for me as I walked to my grandmother’s house. She would taunt me and yell at me. I tried leaving school quickly. I tried dawdling after school and walking home slowly hoping she’d get tired of waiting for me and just go home. I tried walking different routes to my grandmother’s house, but grandma’s house was literally one block from school, and there weren’t that many options. I simply could not avoid her.

Often I would reach my grandmother’s house, red faced, and crying. Finally, I shared with my grandmother what was happening. She talked with me about sadness and loss. She talked with me about the pain my friend’s sister was feeling. She told me that my friend’s sister didn’t really mean that she wished I was dead instead of her sister. She just truly missed her sister. I missed her too. At the end of our talk, my grandmother said that the next time she confronted me, I should say “Sticks and stones may break my bones, but your words can never hurt me.” I knew that was not true. Her words did hurt. But it felt strong and powerful to say. I just hoped she didn’t want to hurt me enough that she would physically hurt me, I also hoped that maybe we could support each other through our shared loss.

As expected, the next day, she and two of her friends intercepted me as I took my most circuitous route to grandma’s after school. The three of them blocked my path. She taunted me with wishing I was dead. I stood up, strong and straight, my lip, quivering, my eyes filling with tears, and I used the phrase my grandma had given me, “sticks and stones may break my bones, but your words can never hurt me.” She was surprised. I’d never talked back to her before. She and her friends turned and walked away, leaving me there with tears streaming down my face. For the first time I wasn’t afraid of her. Although I was still crying, I was proud of myself for standing up and speaking.

I ran the rest of the way to grandma’s house and told her what happened. She hugged me and told me she was proud of me. She gave me a Kleenex to blow my nose.

That was the last day my friend’s sister confronted me on my way home from school. It took several weeks before I trusted that it was over, but she went back to ignoring me, and pretending I didn’t exist. I much preferred that reaction.

I would like to say that we became friends over the common loss, we shared, but our age difference, our experience differences, and the nature of our grief kept that from happening.

I mourned the loss of my friend for the rest of the school year, acutely feeling her absence every day. Then the activities of summer drew my attention and my grief became less acute. When school started the next year, I was in a different classroom, and there wasn’t an empty desk. My friend’s sister had moved up to high school. There were no obvious reminders of her, but I did still think of her.

My six year old self learned about the pain of loss and the grief of absence. She learned that grief brings out different things in different people. She learned to stand up for herself a little. She learned that words hurt, even if we claim they don’t.

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Posted in Death and Dying, Grief, Health and Healing, Loss and absence, Reflections

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Responding to the Blowback on Paying it Forward

Posted on January 13, 2023 | Leave a comment

I’ve long been a fan of paying it forward. I think it’s a delightful gift to do something kind for someone else that is unexpected. I try to do this whenever I can. I do it when I’m especially happy and high on life. I also do it when I’m down and low on life. Both serve different functions for me. The first is sharing the joy that I already feel. The second is giving joy and feeling better about myself because of it.

Here’s the deal. Way too often in daily life we don’t take the time to see one another. We don’t take the time to engage with one another. The kindness of a stranger can truly make someone’s day and I’m cool with it making you feel better about yourself as well. Why not feel good about the good we put in the world?

I don’t know this for sure, but I imagine the kindness I show chaining out beyond the people to whom I am kind. I imagine that the person whose order I paid for it at Starbucks might be kinder to the grocery store clerk who checks them out an hour later or might leave an extra tip for their server at lunch. I like to think that my kindness makes the person who receives it smile, and hopefully have a better day.

I’m frustrated by the memes and posts about “don’t do this; use your money here instead.” as if that was the only choice. For me many times this is a both/and. Not only do I pay for the person behind me at Starbucks, I also give a larger tip to my server, or pay into the lunch fund at a local school. To be clear, I’m a great tipper. If you’re in a service job, I appreciate you, so I share what I can. Making people feel guilty about being kind makes no sense to me. We need a lot more joy. Spreading any kind of joy is good.

Paying it forward isn’t just about buying something for someone else. It’s about sharing a smile. It’s about saying hello. It’s about holding a door for someone struggling with packages. It’s about helping someone pick up items they’ve dropped. It’s about acknowledging other human beings, their existence, and their value.

When I worked at Savanah Bee Company in Boulder, Colorado a couple years ago, I often saw a man selling roses by the side of the street, as I drove to work. When I could, when I had cash from tips, I would buy a rose from him. One day I had a few more tips, so I bought six roses. After I parked, as I walked to the store, I gifted everyone I saw with a rose. Five of the people were unhomed individuals sitting on the street. One woman grabbed my hand and thanked me. She said she couldn’t remember the last time someone had done something kind just to do it. She said it made her feel seen. Some might say people without homes don’t need roses. They need food, water, socks, gloves, warm coats, a place to sleep, etc. While all that is true, they also need to be seen. That day, I had the capacity to give her a rose, to say “I see you”.

My point is this: everyone needs to be noticed. Everyone benefits from a bit of joy. Everyone benefits from a show of kindness. We make the world a better place for both the giver and the receiver. So don’t let anyone tell you you should be doing this instead of that. It’s not their business. Just give what you can, when you can, with an open heart.

Paying it forward is never the wrong option. Paying it forward is never a bad decision.

So, pay it forward in the way that works best for you. If you feel it, do it. The world, or at least someone’s day, will be brighter because of it.

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Posted in Inspiration, make a difference, Pay it Forward

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On Fear, Hope, a Bracelet, and Gratitude

Posted on October 20, 2022 | 1 comment

Sometimes those who love us see more clearly what we need than we do. Today I write about one of those times. Today I write about fear, hope, and a bracelet that signified both. Today I write about gratitude. This month is the 10-year anniversary of the freak dancing accident that resulted in breaking both of my wrists, triple fracturing my right and double fracturing my left. That accident was in many ways both a blessing and a curse. I learned so much about myself and those I love. I learned that people would be there for me if I needed them. I learned I was safe to be helpless. I learned how to deal with the most excruciating pain I could imagine. I learned to slow down, to be kind to myself, to accept care, to ask for help. I didn’t learn these lessons easily, but I learned them.

Throughout the holiday season, I was working my way through splints, then casts, then braces with increasing levels of physical therapy. For homework, I was playing in a bowl of rice multiple times a day to reduce skin sensitivity and promote flexibility. I was opening and closing wooden clothespins, learning to touch my fingertips to my thumbs, and trying to relearn how to do simple tasks for myself, like feeding myself, brushing my teeth, dressing myself.  

One day, my friend Miche Dreiling brought me a present. It was a small, square box. Inside was a delicate, red bracelet. It was the most terrifying thing I had ever seen. A bracelet! A bracelet? My skin was so sensitive I couldn’t imagine ever being able to wear a bracelet again. Even though this one was so delicate and small, it looked like a torture device to me. I know I looked at Miche confused. “Not for now”, she said. “For later… when you’re healed”. I closed the lid on the box and put the bracelet in a drawer in my hutch. I wondered if I would ever take it out. It became a symbol of fear and hope.

The day I decided I was ready to try to wear it finally came. I was apprehensive as my skin was still so sensitive, but it was time. Andrew helped me put it on. And though I could only wear it for a short time that day, I knew that sometime soon, I would be able to wear it for much longer periods. I knew that I would someday be able to wear all my treasured bracelets and rings whenever and for as long as I wished. That day wasn’t here yet, but it was coming. Today as I reflect 10 years later, I am wearing an iWatch, a wrap bracelet, and 5 rings on my hands. The moment I opened Miche’s gift, I doubted that this day would ever come. Now I don’t think about jewelry anymore. I wear it easily and without pain.  

In all honesty, what at first felt like the most insensitive gift I could imagine became a talisman of hope as I embraced my healing and the belief that I would regain full function and capacity. I am grateful that Miche brought me this talisman of hope. I doubted the wisdom of this gift. In retrospect, it was just the gift I needed. I cherish that bracelet as a reminder that in fear, there can also be hope.

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Posted in Family Stories, Fear & Hope, Recovery from injury, Uncategorized

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Forgiveness and Anticipatory Hope

Posted on April 30, 2020 | Leave a comment

“Forgiveness is giving up the hope that the past could have been any different.” – Oprah Winfrey https://chopracentermeditation.com/ *

I don’t hold grudges. I don’t harbor resentments. For much of my life I simply forgave and forgot any transgressions against me – to the point that one night, over dinner, my best friend and my ex-husband recounted all the negative things that had happened to me since they’d known me. When they recounted the events, I knew they had happened, of course. I just didn’t value them enough to remember them. I might not even have been able to recount them without their prompting.

What I do hold onto is what I call anticipatory hope. Anticipatory hope is my belief that the bad, the negative, the hurtful, the lack in my past could have been different, if people had made different choices. Because I believe these alternative choices were possible then, I believe they remain possible in the present and in the future.  

In a recent conversation with my daughter about an upcoming event we were both dreading, she was lamenting all the negative things she expected. I was trying to lift her spirits talking about how this time things might be different. Alyssa paused, looked me full in the eyes and said, “That’s your problem, Mom. You always look on the bright side. You always believe people can be better, that they will be better. When they don’t, when they act like they always act, you feel let down and hurt. That’s the downside to you always having this anticipatory hope thing. It’s exhausting. You’re not realistic.”

Alyssa in her blunt, no-nonsense way had really hit on something. I’ve always viewed my anticipatory hope as a strength. It helps me be optimistic, remain positive in difficult moments, see possibilities.

Because I believe that anything is possible, that anyone is capable of making a different choice at any moment, it is hard for me to release those in my life who repeatedly choose to be other than who they have the capacity to be – to be honest, those who are damaging to me. More importantly, I hope they will treat me differently than they chose to treat me in the past.

When I first heard the meditation at the opening of this post, it was as if I had been punched in the stomach. Sometimes truths are so profound that when confronted with them, they change something immediately and fundamentally. Sometimes they are the catalyst for a more gradual transformation. For me, this truth was both.

I listen to these meditations to help me sleep. After hearing this statement, I knew there would be no sleep that night.

I turned to my journals for insight and realized I had been writing about the same issues for 1, 5, 10, even 20 years! My anticipatory hope made it impossible for me to let go, to move on.

I believed I had forgiven. But in the same way that holding grudges, harboring resentments, not forgiving, keeps us from releasing the past and moving forward, anticipatory hope does the same. Because I held onto anticipatory hope, I had not released those I needed to release.

I am still a work in progress. Releasing the “what could be” is hard. It’s a desired future we hope for. It holds us bound to the past, hauling the weight of the past into the present and the future. Releasing that burden. Releasing those who are not who we wish they were (which, to be honest, is not their job in the first place) is true forgiveness. And, in the long term, a gift to them and to me.

* 21 Days of Meditation – Finding Hope in Uncertain Times

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Posted in Growth, Health and Healing, Healthy Relationships, Personal decision-making, Quality of life, Reflections, Resilience, Self-determination

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Reflections on 2014 and Plans for 2015: Nurturing Life, Relationships, Writing and Adventure

Posted on January 9, 2015 | Leave a comment

As I reflect on 2014, I am amazed at all that has happened. In May, my son graduated from Butler County Community College with his Associate of Arts degree. In May, I began a 1 year sabbatical leave from Wichita State University. In September, I embarked on a sojourn to find myself as a writer in Florence, Italy that lasted for 3 months. In December, my daughter graduated from the University of Nevada, Las Vegas with a Bachelor of Arts degree majoring in Psychology and minoring in Communication.

This year has been a year of completion, a year of pondering, a year of strategic planning. It has been a year in which I claimed my identity as a writer. (You would think that given all I’ve written and published over my academic career, that would have been self-evident, but, at least to me, it was not. It is now.)

I have developed some passions this year that I will carry into next year, many of them finding voice here, through my blog.

Here are my insights and commitments for 2015:

Health, wellness, relationships, and end-of-life

  • We do not talk about the messy parts of injury and illness in this culture. It might be helpful if we did, making those who go through such experiences feel less alone and isolated.
  • We do not talk about the nuts and bolts of managing the end of a life. Negotiating relationships with family and friends, negotiating relationships with health care providers, negotiating relationships with insurance, the military, employers, pension plan providers. We don’t talk about all the time consuming sorting and organizing and paperwork, (Did I mention the paperwork?) necessary to nurture someone through the end of their life. We all die. Culturally we as a society and we as individuals are often unprepared for this eventuality.
  • We struggle with the notion of death with dignity and who gets to make choices at end of life. Witness the media furor over Brittany Maynard’s decision to end her life when the symptoms from her brain tumor, originally diagnosed as a grade II Astrocytoma, was later diagnosed as the deadliest form of brain cancer, Glioblastoma Multiforme, a cancer that often leads to intense pain, debilitation and death within a year.

These are areas I will continue to write about in the coming year. I have plans for a manual for end-or-life caregivers on the nuts and bolts of helping a loved one and preparing for what comes after. It will take the form of a book with examples which illustrate questions, and worksheets to assist caregivers in negotiating difficult decisions and preparing for communication with critical people. It will be practical and easy to use.

Healthy relationships

  • Culturally we too often make the end of a marriage a confrontational, adversarial situation when it doesn’t have to be.
  • We redefine a relationship that ran its course as a mistake that never should have happened. This view disregards the positive aspects of the relationship before it was time to end it.
  • We focus more on problems than mobilizing strengths when trying to deal with critical issues in families and relationships. This is often an energy sapping, limiting approach that keeps couples and families mired in the past and unable to build the future they desire.

I will continue to write about these issues as well. I ultimately plan to publish a book for the general public on building the relationship you want. Based on over 25 years of research with couples in romantic relationships, and my experiences working with actual couples in relationships, I believe I can offer a unique perspective on building relationships that meet partners’ needs and moving on should it be the healthy decision to do so.

I will also present a session on this topic at the Fifty Shades of Faith: Intimacy, Sexuality, and Spirituality Conference sponsored by the CAVU Center in Tulsa, Oklahoma on February 21. I am excited about the opportunity to bring this workshop to the public. Here’s a flyer for that event! All are welcome!

CAVU combo flyer

Hunger awareness:

  • If we bring the power of our best and brightest to bear, I believe we can end hunger in our lifetimes.

I am honored to have been there at the start of the PUSH – Presidents United to Solve Hunger collaboration and at the launch event at the United Nations in December. I am committed to continuing and building the WSU Hunger Awareness Initiative. I am committed to providing my support to building local, state,  national, and global context appropriate, hunger efforts. This month, I will complete a draft of a manual on how to start a statewide hunger dialogue that builds on our experiences in Kansas with the first one. I do this work as a Visiting Faculty Member at the Auburn University, Hunger Solutions Institute. I am honored to be affiliated with this amazing group of people.

Of course, I have other writing projects with wonderful collaborators that I am in the process of completing as well. As I look forward to the 8 months remaining on my sabbatical, I am excited and prepared.

On the personal front, I will continue to nurture my health and relationships, spending time with family and loved ones, scheduling adventures and get-aways, and working on remaining mindful and sustaining the calm I developed in Florence. While I will not elaborate on all that is included in my personal life here, it deserves much more than what appears here as a footnote to my professional life. Personal/professional  balance remains one of my strongest commitments for 2015.

Onward!

Happy 2015!

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Reflections on Death & Dying – The Beginning of the End of SOB (Sweet Old Bill) – Part 2

Posted on November 2, 2014 | Leave a comment

In July and August 2013, I supported my uncle, William Leo Pence, as he died. It was my chance to be there for a family member I loved. It was also an opportunity to put into practice my beliefs about human dignity, choice, and the power to make our own decisions and have them respected at the end of life.  It was one of the most grueling things I’ve ever done.

Born November 19, 1928, my uncle was a veteran of the Korean War. He stood 6’6” tall and his personality matched his height. Eight years before his death, he’d had a kidney transplant, but aside from that, and low level medications for slightly elevated cholesterol and blood pressure, he was very healthy. He was bright, independent and active. And, as Frank Sinatra would say, he liked to do things his way.

Once he took himself off all his medications, including the anti-rejection drugs for his kidney, he thought he would die quickly and peacefully. He put his affairs in order and went home to wait. (If you are reading this blog for the first time, the introductory post to this story can be found here: https://dballardreisch.wordpress.com/2014/10/14/the-florence-journals-reflections-on-death-and-dying-the-beginning-of-the-end-sobs-story-sweet-old-bill/) Unfortunately, will is not always the same as outcome, and what my uncle thought would take days, took more than a month. During that time, he gave me his durable power of attorney and I became his health care surrogate. Technically, he shouldn’t have needed a health care surrogate. He had spelled everything out very clearly. His advanced directives were in order: No invasive measures. No lifesaving interventions or life extending treatments. He wanted to live as fully as possible for as long as he had. He just didn’t want anything to make that longer than it needed to be. He did want to continue speech, physical, and occupational therapy so that he could be independent as long as possible. He wanted to live the highest quality of life he could.

During this process, my uncle made a mistake that almost took choice out of his hands. It had been a long, trying day. He was tired. He was uncomfortable. He was bored. He was fed up. Taking himself off medications had not led to the quick, painless decline he had anticipated. He wanted to talk with someone he thought would understand what he was feeling, but who wasn’t personally invested in his situation. He called 911. He wanted to tell someone that would understand that he was ready to die.

My uncle lived in Florida and his admission to a health care professional that he was ready to die led to his emergency admission into the hospital under the Florida Mental Health Act of 1971, the Baker Act. The ambulance came to my uncle’s house, took him to the hospital, and kept him for the full 72 hours allowed by law. He was furious! Unbeknownst to him, in Florida, it is considered against the interests of the state for an individual to be ready to die. The powers that be see it as a small step from being “ready” to die to committing suicide. The Baker Act required that he be assessed by a psychiatrist to determine if he was potentially dangerous to himself, someone else, or whether he had a mental illness. The key question was whether he was a suicide risk. Had they seen him as suicidal, the doctors told me that would have overridden his advanced directives even if he had been considered sane when he made them.

At the hospital, he rallied and convinced the psychiatric staff that he was not suicidal. However, without consulting us, they put him on medications to stabilize his mood and treat what they saw as depression. Now that they were convinced that he was stable emotionally, the question became what to do with him. After the 72 hours, they had to commit him or release him. He could no longer walk unaided and had very little strength. His insurance didn’t cover 24 hour nursing care. His friends, who were in their 80s, couldn’t care for him now that he was largely immobile. I lived 1300 miles away. He couldn’t go home. The doctors told us that they could not send him to a rehabilitation hospital unless he showed them that he wanted to get better. Because his test results were still so good, they didn’t think his decline was steep enough to warrant hospice care. The idea that he wanted to be as healthy and capable as he could as long as he lived, yet refused to take medication was confusing for medical staff. After much discussion, his doctors decided to give him a physical therapy consultation which would determine whether or not he could be placed in a rehabilitation hospital. My uncle used every bit of strength he had and cooperated fully with the PT assessment. They found him compliant, cooperative, and committed to building his strength. They decided to send him to a rehabilitation facility. Now if was my job to find one.

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Posted in Health and Healing, Negotiating end of life, Personal decision-making, Reflections, Self-determination

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The Florence Journals: Reflections on Death & Dying – The Beginning of the End of SOB (Sweet Old Bill)

Posted on October 14, 2014 | 1 comment

On July 4, 2013, Bill declared his independence. In the early 2000s, he’d had a kidney transplant. Aside from that, he was an extremely healthy 84 year old. As with most older adults, in the United States, though, he was on multiple medications to manage multiple minor chronic issues. That’s really context for our story. Approximately a year and a half earlier, after his wife’s death, a series of minor mishaps, literally missteps, started the journey that would lead to his declaration. He needed to have several toes removed due to poor circulation, causing significant mobility issues. Recovering from this, he contracted a virus that put him to bed for several weeks. When he was well again, he was extremely weak and needed to build strength to walk again. He got to the point where he could use a walker or a cane to haul his 6 foot 6 inch frame around, and ultimately take several steps unaided. However, his strength and vigor did not return. This frustrated Bill, an extremely independent man.

One evening he stepped on something sharp. He couldn’t see or feel what it was, but his foot bled profusely. His neighbor and good friend Dino, who had been his support person, particularly with activities of daily living, would be over the next morning to assist him, so Bill just put on a Depends, wrapped his foot in a towel and went to bed. The following morning, Dino found him this way, blood soaked towel wrapped around his injured foot, soaked Depends, his friend needing assistance. Dino cleaned Bill up as best he could, washing him, slathering his foot with antibiotic ointment, and bandaging his foot. The bleeding had stopped by then. Dino made Bill breakfast. Bill, not being one to lie idly by, fussed and grumbled about not being able to get around, but Dino persuaded him to stay in bed that morning and give his foot a rest.

The next day, Bill was still in pain and couldn’t put weight on his foot; Dino cleaned and re-bandaged it for him. This happened the next day and the next and the next, until the fifth day when Bill awoke with a fever and Dino recognized that Bill’s foot was infected. Dino called an ambulance to take Bill to the hospital.

Whether the toe removal, the virus, the item Bill stepped on that led to the infection, or the spiral of medical issues set in motion at the hospital when Bill arrived for treatment for his foot were singularly or collectively the last straw, for those who knew him, Bill’s July 4 declaration of independence quickly became a predictable conclusion. Bill was a proud man, an independent man. He’d been in the medical corps during the Korean War. He was not comfortable relying on others.

At the hospital, an inexperienced physician disregarded the information that Bill had had a kidney transplant and prescribed an antibiotic that disrupted his kidney functioning. He told Bill he was sorry, but they would need to do minor surgery to repair the damage. Bill took matters into his own hands, requesting a psychiatric consultation. After a 45 minute consultation, Bill asked the psychiatrist if she thought he was competent to make his own medical decisions. She responded “Absolutely!  I have no questions at all about your competence. Why do you ask?” Bill replied, “Because as of today I am taking myself off all my medications. I am also refusing this surgery to repair the damage caused to my kidney by the antibiotics and I don’t want anyone to be able to challenge this decision. Now, please get a piece of paper, we’ll write out each of my medications. I will sign that I refuse to continue them and you will sign that I am competent to do so”. Surprised, the psychiatrist did as Bill requested.

Bill remained calm and resolute as several medical professionals tried to talk him out of this decision. He was done with medical care. With signed paper in hand and fresh advanced directives and against his doctor’s advice, Bill was wheeled out of the hospital. His trusty friend Dino was there to take him home. Bill believed that he would die quickly as he thought that taking himself off the anti-rejection medication for his kidney would lead to his body rejecting the kidney, causing it to shut down. He believed he would die quickly and painlessly. That was not to be the case.

When Bill left the hospital, he believed he was going home to die. His two friends Dino and Kenny disagreed with Bill’s decision and it took him several days to bring them around to at least understanding his way of thinking. Once they were grudgingly on board, Bill called me, his niece, and told me of his decision. I listened quietly. We both shed a few tears. I told him I loved him and would miss him, but that I would fight for his right to decide. Neither of us knew what this would ultimately involve. But our trust and commitment to one another, and to Bill’s right to make this decision, strengthened our resolve to face whatever came next.

Bill got his affairs in and went to bed to wait.

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Posted in Negotiating end of life, Personal decision-making, Quality of life, Reflections, Self-determination

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A Love Letter to My Son on the 2nd Anniversary of the Dancing Accident that Broke My Wrists

Posted on October 12, 2014 | 2 comments

We wish things for our children before they are born. In my case, I wished that my children would be loving, strong in character, and independent. My son and daughter are all these things in very different ways. This love letter, though, is to my son. Often we don’t get to see the full measure of who our children become. As they grow, they live their lives more and more separate from ours. I got the opportunity to see my son for the man he is. It is an opportunity I will always cherish.

Stefan

On October 13, 2012, our lives changed. Stefan was in Wichita, Kansas visiting me before joining the Navy. He was preparing for boot camp and contemplating signing his final admittance paperwork. I was at my favorite academic conference of the year, the place where I have found both my creative inspiration and my best friends. This year the Organization for the Study of Communication, Language and Gender Conference was held in Tacoma, Washington.

That fateful day was perfect. I walked the city streets exploring and shopping for gifts for family and friends. In the late morning and afternoon, I attended research panels and communed with friends and colleagues. At the awards banquet, I was awarded the prestigious Feminist Teacher / Mentor Award based on letters of support from dozens of colleagues, students, and former students. This is the most treasured honor of my academic career. To top it all off, I was selected to host the induction ceremony of Dr. Bren Ortega Murphy into the Wise Women Council. This day was without question, one of the highpoints of my academic life.

Later that evening, following dinner with some of my best friends, the organization sponsored a dance and karaoke party. I love to sing and dance. Could this day get any better? As fate would have it, my best academic day also became the start of one of the most challenging adventures of my life. On the dance floor that evening, one of my best friends spun me around. I reeled backwards, lost my footing and fell, fracturing my right wrist in 3 places, and my left in 2.

I would be fully immobilized for the next 3 months and slowly and painfully thereafter, learn to use my hands again. My convalescence, during which I needed constant around the clock support, was 6 months. Even after that, there were some things I still couldn’t do, open jars, cut meat, negotiate some articles of clothing, etc.

My motto has long been that you can view any situation as a crisis or an adventure and that not very many things rise to the status of a crisis. These events allowed me to put this belief into action, to try to live it under some of the most challenging circumstances I could imagine. My belief has not changed, but I have learned to recognize the critical role others can play in making it a reality. Because of the love and care of my son, breaking both my wrists, being completely helpless, and learning how to use my hands again was not a crisis. It was an adventure. I have written in earlier posts about the trip back to Wichita, about losing my graduate students and making the trip alone, about the scary woman who thought I needed hot coffee, about my seatmate and later a flight attendant who took care of my hair for me, about the young basketball star, traveling with her parents to Wichita State University to check out the school, who fed me and gave me pain medication.

I have not written about my son, about our adventure. Maybe because it was so big, so all encompassing. It wasn’t time bound like 2 plane flights. It was day-to-day for over 6 months. It was emergent with no set ending that we were aware of. During this time, my insurance company told me on multiple occasions that because I could walk, I was considered too mobile for any in-home nursing support. This, despite the fact that I could not use my hands at all and therefore could not accomplish any activities of daily living on my own. My 24/7 care fell to my son.  There was never really a conversation about his doing this. He just smoothly moved into the role of my nurse and full-time caregiver.

I remember very little about the early days. To manage my excruciating pain, I was in a drug induced haze much of the time. I do remember my son giving me pain medication, brushing my hair, helping me to the bathroom, feeding me, and a myriad of other little things, none of which I could do for myself. I remember him being there when I needed something, often before I realized I needed it. In those early days, we developed a routine and designed our own ways of managing sensitive issues. Taking care of someone completely requires suspending modesty. It requires an unparalleled level of intimacy. It can be a humiliating experience, an embarrassing experience, an uncomfortable experience. Because of his grace, it was never humiliating or embarrassing. and we developed work arounds for the uncomfortable parts.

There’s something you should know about me. While it is easy for me to help others, it has always been hard for me to ask for help. While I never see those I help and support as burdens, for some reason, I believe (believed) that if I needed help I was an inconvenience, a burden. Through his compassion and care, my son showed me that this was not the case. He made it ok that I needed support. He showed me that I was not a burden, an inconvenience. He showed me that he was glad to help me.

Once the drug haze wore off a bit and my pain became more manageable, I could think for several hours at a time between doses of pain medication, and I wanted to get back to work. I was still teaching a class (fortunately I had 4 weeks of guest lecturers lined up prior to the accident) and running the search for our new director at the Elliott School of Communication. Stefan policed me to make sure I didn’t work too hard. We both learned that if I did too much too fast, I would pay in pain and exhaustion. He limited people’s access to me, determining when and for how long my graduate students and friends could come work with me. We identified what he was willing and comfortable doing and what I needed to ask others to do. He didn’t like emails or any work related phone calls, so my graduate students and friends helped with those.

On Thursdays he would get us Buffalo Wild Wings, mango habanero and Asian zing boneless wings that set my mouth on fire. We would eat them propped up on my bed, him feeding me. For a lot of the early months, I was mostly bedridden. Because of my multiple fractures, and to avoid surgery, I was not permitted to move much as my wrists healed. Eventually I was put in casts and I could move around a bit more. During my immobile time, we watched the entire series of Third Rock from the Sun on Hulu+. Sometimes if my pain was too bad, we would watch episodes over and over until I was alert enough to remember them. As I got more alert, it became clear to me that Stefan needed breaks. With some coaxing, he would take some down time when friends would bring meals and stay to chat and feed me. Eventually, he let friends take me to their home for the weekend so he could get some real time off. He was very protective, but we both knew he needed that time.

What I remember most about this time is my son’s presence. He was just there with me. We had few disagreements. The biggest was over his putting mascara on me. “You don’t need it. You’re beautiful without it”, he’d say. “Yes I do. I’d put it on myself if I could”, I’d reply. “I’ll poke your eye out”, he’d say. “No you won’t”, I’d reply. Then he’d help me with mascara.

I don’t believe that Stefan or I are the same people we were before this experience. To be helpless is not easy. To be completely reliant on someone else for everything is not easy. To be completely responsible for another is not easy. To negotiate this type of situation with love and compassion, with presence and commitment, is an incredible gift. To make it an adventure that we grew through together was the most amazing part of this experience, and our relationship will never be the same.

I think that we are both stronger, better prepared to deal with whatever life sends our way. I am easier, more open to asking for help when I need it. He knows his strength and the depth of his compassion. I am more grateful to my son than I can put into words. He made me safe. He loved me. He nurtured me and he treated me with compassion and respect during my helplessness. I learned firsthand that he is compassionate, thoughtful, intuitive, and very kind. He has a calm, peaceful spirit. Not much seems to faze him. He is an incredible man and his strength of character puts me in awe and fills me with joy. He is the most amazing man I have ever known, and I am blessed that he is my son.

Stefan and me 3

Stefan and me 2

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The Florence Journals: Reflections on Death and Dying – Who am I in this Conversation?

Posted on October 10, 2014 | Leave a comment

When I started this writing journey in Florence, Italy, there were things I wanted to write and things I needed to write. This is the first of a series of posts that represent one topic from the latter list. They will deal with my perspective as a health communication scholar on end of life care, focused largely around my uncle’s death in 2013. This first post outlines how I came to this conversation personally and academically. I thought you should know from the outset, who I am in this conversation. For me, there has always been a strong relationship between the personal and the professional as you shall see. The following posts in this series will include academic critiques, personal narratives, and insights on how to negotiate end of life and advocate for self-determination and personal decision-making. 

In 1986, when she was 15 years old, my youngest sister was diagnosed with Acute Lymphoblastic Leukemia. She is a survivor who today is happily married with 4 children. That said, much of my sister’s battle with leukemia illustrated for me what is wrong with the US health care system. I had just developed my participative decision-making model for physicians and patients which would ultimately be published in 1990 (1) and in an expanded version in 1993 (2) when my sister was diagnosed.

As an academic, my first response is always research. So, when I flew to Florida to meet with my sister’s oncologist for the first time following her diagnosis, I was ready with questions about alternative treatments, success rates, the role of nutrition in enhancing her ability to overcome the cancer, treatment side effects, and so on. My first question after my sister’s oncologist outlined what I thought were his treatment recommendations was “What other alternatives do we have?” He replied, “You could leave.” That stopped me short. After a long pause, I replied, “I’m sorry. I don’t think you understood me. I’m asking what other treatment options are available for this type of leukemia.” He repeated, “None that I recommend, so if you don’t want to do what I advise, you are free to seek treatment elsewhere.” I was stunned. So much for collaborative decision-making. It quickly became clear that for my parents, there would be no options, no alternative treatments considered. This doctor was “the best”; they were going to put my sister in his hands.

I spent as much time in Florida with my sister as I could, traveling back and forth from Reno as my teaching schedule allowed. I remember on one trip, my sister asked me to play in the swimming pool with her. I used to be a pretty good diver. Back flips were my specialty. After doing several of those and making her laugh, she asked me to do a front flip. I don’t know why, but front flips have always been more of a challenge for me. I tried repeatedly over what felt like hours to do a front flip, stinging the backs of my legs a bright red. That night after dinner, we were snuggling in her bed and I quipped, “Well, since I clearly can’t do a front flip, what else can I do for you sweetie?” She said “Write about us. You’re the writer in the family. Write our story.” So I did. I interviewed my parents and my sister and I wrote their story. I didn’t include my voice as I wanted to empower theirs. I was “in and out”. I wasn’t part of the day to day. That journey was theirs. I co-authored what became a book chapter with my sister on her story and that of my parents. (3) I also wrote a companion chapter on the disenfranchisement of families coping with adolescent cancer (4).

In late 2001, my father became ill with what was diagnosed as terminal cancer. He was given 6 months to live. He died on June 27, 2002. My family was together for the last 2 weeks of his life and I took on the responsibility of talking with him about his final wishes and making arrangements for him. While not easy conversations, I think he appreciated my willingness to have them, including planning his funeral. The only things he wanted were to be buried in the local cemetery. He’d asked that his lifelong friend Dick be a pallbearer, and he wanted me to sing the Simon and Garfunkel song, Bridge over Troubled Water. Given the circumstances, I told him I knew I wouldn’t be able to sing. I did agree to do the readings at his funeral Mass though, and I was able to work through the church to find a young woman with a lovely voice who agreed to sing. The song was sung, my father’s wishes honored.

During those last two weeks, hospice was also with us around the clock. They were a blessing. They explained the dying process, what we could expect, choices we had to make, like allowing my father to stop eating, pain medications, etc. The only place we strongly disagreed and I could not win was over pain medication. As his condition deteriorated, the pain medications wore off more and more quickly. I spent the last 3 days of his life, until the afternoon of the day he died, on the couch in the living room next to his hospital bed. I dozed there and woke to administer his pain medications every 2 hours. When he dozed, I dozed. When he was restless or awake, I was awake. We talked. We held hands. I brushed his hair. I was there for him. The problem came in that I was not permitted to dose him more frequently than every two hours. Some of those two hour periods were brutal. For me, there was absolutely no reason for my father to feel any pain. I believed his pain medication should be “as needed”. For the hospice workers, the fear that he “might become addicted” held greater weight.

Shortly after my father’s death, I coauthored an article with Joyce Letner about centering families in communication research about cancer, outlining specific premises and strategies to support families in coping with cancer management (5).

You probably see a pattern here. My personal life often informs my academic work in health communication, or vice versa. While many other projects and lines of research over the next 10 years impacted my preparation to support my uncle and advocate for his wishes as he went through the process of dying in the summer of 2013, I was not fully ready. For this experience acting as his advocate, I have learned a great deal about negotiating end of life and health care decision-making which may be useful to others. I will write about those in future entries.

One important thank you. I am indebted to my colleagues at the Nevada Center for Ethics and Health Policy, at its height, a cutting edge think tank where medical, communication, public health, and theological experts brought their insights to bear on promoting advanced planning and quality of life decision-making at end of life. Through their inspiring work over years, I embraced more fully the notions of self-determination in health decision-making, the critical role of communication in health care, and patient empowerment. These insights served me well on this journey. So, I thank the kind, gentle, Reverend Noel Tiano, director of the center, and my insightful, brilliant colleagues who taught me the importance of advocacy, Drs. Barbara Thornton, Greg Hayes, and Craig Klugman.

Bibliography of my relevant publications referenced in the above:

  • Ballard-Reisch, D.S. (Spring, 1990).  A model of participative decision making for physician-patient interaction.  Health Communication.  2(2), 91-104.
  • Ballard-Reisch, D.S.  (1993).  Health care providers and consumers:  Making decisions together.  In B. Thornton and G. Kreps (Eds.).  Perspectives on Health Communication.  (pp. 66-80).  Prospect Heights, Ill: Waveland Press.
  • Ballard-Reisch, D.S. & Price, J. (1996). Separation and oncology: Copying strategies of a family dealing with leukemia. In E. Berlin-Ray (Ed.). Case Studies in Communication and the Disenfranchised. (pp. 75-86). Hillsdale, N.J: Lawrence Erlbaum and Associates, Publishers.
  • Ballard-Reisch, D.S. (1996). Coping with alienation, fear and isolation: The disenfranchisement of adolescents with cancer and their families. In E. Berlin-Ray (Ed.). Communication and the Disenfranchised. (pp. 185-208). Hillsdale, N.J: Lawrence Erlbaum and Associates, Publishers.
  • Ballard-Reisch, D.S. & Letner, J.A. (May, 2003). Centering families in cancer communication research: Acknowledging the impact of support, culture and process on client/provider communication in cancer management. Patient Education and Counseling, 2074, 1-6.

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Posted in Empowerment, Negotiating end of life, Personal decision-making, Quality of life, Self-determination

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Reflections on the candlelight vigil for Dr. Tiller in Wichita May 31, 2009

Posted on June 2, 2009 | 3 comments

I know many people have written about Dr. Tiller’s murder. I know that his death will galvanize and polarize those who supported as well as those who disagreed with his beliefs and actions. I did not personally know Dr. Tiller, but I was compelled to attend the candlelight vigil last night.  I was impressed with the civil, thoughtful, compassionate assembly.  Those in attendance were kind to one another; members of Dr. Tiller’s church passed out candles and walked through the crowd of around 400 people relighting candles that were blown out by the wind.  Strangers stood side by side and shared their sadness, their determination for the future of women’s health, their fears for the future, and lit and relit one another’s candles.  People met and embraced friends who shared their sadness at this tragedy. I left when the singing began with a greater appreciation for Wichita. I appreciate both diversity and conviction. I keep being surprised by both here. I appreciate the careful, thoughtful way those who spoke talked about Dr. Tiller’s life and contributions to the community and to women’s health choices in general. I appreciate the courage of conviction and ability to look at the bigger picture of those who spoke.  It’s always easier not to make waves, to choose the safe, nonthreatening path.  Dr. Tiller lived for years consciously, publicly taking the most difficult of paths, living the courage of his convictions. I am saddened that such a tragedy occurred in my adopted city. I am heartened by those who attended and spoke at Dr. Tiller’s vigil.   In the face of a tragedy, Wichitans in Old Town last night pulled together in thoughtful compassion and proved that the actions of one man did not reflect the views of many. On balance, Wichita earned positive marks from me yesterday.

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