The Florence Journals: On Writing, Rhythm, & Street Art

So today, after an incredibly productive day of taking insightful workshops (about 5 hours worth), I decided to head out and “troll” the city. There was so much going through my head and I just wanted an energy shift, time to just “be” in this lovely city. I trolled the city for 3 hours. When I troll, I walk wherever my feet take me with no plan and see whatever presents itself to me.

It rained again today, so the stone streets were wet tonight. I walked, looking in shop windows, stopping to listen to street musicians, saying hello to friendly shopkeepers. I stopped to watch several hundred people run by me who were participating in the Florence Run (an 18K run – or about 11.25 miles). I trolled looking for sign art, a transient production by a group of artists who decorate street signs that are cleared off almost immediately.

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These are such an amazing complement to the pastel street art that occurs every day (if it’s not raining).

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And there is music everywhere. I trolled the carousel in the Piazza della Repubblica, one of my favorite spots. A young man handed me a tissue so I could wipe off a bench and sit for a while.

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One of my hopes when I came here without knowing the language and without knowing anyone was that I would learn to slow down, to reflect more, to get better at just “being” and not “doing”, to harness my extroverted side, to give expression to my introverted side. In my “real” life, I move quickly and get a lot done. I seldom reflect on what I’ve done before careening into the next thing (or the next 10 things). I have come to realize that for me this is a learned pattern. I have always striven to be productive, to be the best I can be. Often in my life, this has translated into doing as much as I can as quickly as possible. I am also a perfectionist. Getting “it” done isn’t adequate. I have to do “it” as well as I possibly can, whatever “it” is. My drive is one of the reasons I’ve been so successful in my life.

I have found a different rhythm in this city than I have at home. I walk slower. I look around all the time. I soak in the city. I am delighted to have had the chance to share some of this beauty with you, dear reader. For myself, my photos and writings will fuel my memories and be reminders of this time when I am back home. I hope they will also be reminders to maintain the calmer, more relaxed pace I’ve found here. I’ve found, among other things, that when I slow down I am almost as productive as when I’m moving at the speed of light back home.

Is it any wonder that I am inspired to write by all the beauty, art, and wonder in this city?  I walked home tonight, more slowly than I would at home, up the steep, street to my apartment.

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I am so blessed to have this time.

A presto (until next time)!

On the Importance of Support for Health Care Surrogates: The Middle of the End of SOB (Sweet Old Bill)

One day, each of us will die. I have come to believe that Dylan Thomas had it wrong when he argued that we should “Not go gentle into that good night”, that we should “Rage, rage against the dying of the light”. I now believe that going gentle into that good night is sometimes the definition of a good death. So many factors go into a good death, particularly in a culture as death averse as ours. I cannot say whether or not my uncle had a good death. I can say that he met death on his own terms. That, however, is a topic for another day. Today I want to talk about the people who made the role I played as his health care surrogate easier, because being a surrogate in the U.S. still often means dealing with a medical establishment bent on raging, on defeating death. As I helped my uncle navigate the end of his life, I was fortunate to have three strong advocates supporting me.

My maternal aunt (my uncle’s sister), a nurse, helped me stay clear when I doubted myself or my choices. She reinforced the importance of my role as my uncle’s health care surrogate, and commiserated with all the craziness I faced when dealing with insurance companies, medical providers, long-term care and rehabilitation facilities, our family, and my uncle’s friends. She let me rant. She let me cry. She listened and advised. To my aunt, I say “Thank you for your compassion, your calmness, your willingness to troubleshoot with me, your clarity, your unwavering confidence in me, and your kindness. Doing this without you would have been so much harder.”

My second support person was my friend Andrew who was there for me because he loved me. He asked the hard questions and supported me in making the tough decisions. He helped me stay clear, encouraging me to write things down, so that I would have my own words to help me sort through issues as they arose, so that when my decisions or motives were questioned, I would have clarity for myself. I wrote. Reading what I wrote at various points helped me to remain strong in supporting my uncle’s wishes. To Andrew I say, “Thank you for your insight, your  intelligence, your compassion. Thank you for holding me as I cried, for driving me to the airport, for picking my up from the airport, for bringing me flowers, for loving me through this difficult time. You are a treasure.”

My third support person was the case oversight doctor at the rehabilitation hospital. He became my lifeline. He reinforced my uncle’s right to decide, made me aware of what I would face as I advocated for my uncle in the rehabilitation hospital, and helped me negotiate the care decisions we faced. To this physician, I say, “Thank you  for helping me reach and maintain clarity, for helping me understand the mindset and motives of health care providers, for preparing me for all the challenges I would face, and for fortifying my commitment to “stay the course”, even when making a different choice would have been easier.”

As I’ve said, I’m a health communication scholar. My academic and personal work prepared me to serve as my uncle’s health care surrogate as he negotiated the end of his life. I had over two decades of my own research. I had my experiences with colleagues and friends from the Nevada Center for Ethics and Health Policy. I had tools others may not have as they take on this role. These resources didn’t change the fact that I continually and painfully second guessed myself throughout this process. They didn’t prepare me for who I was as a person, a niece, helping someone I loved in the process of dying. They didn’t prepare me to negotiate this process with health care providers, family, and friends. My second guessing came mostly from the reactions of my family, my uncle’s friends, and medical providers who disagreed with my uncle’s decisions or questioned my motives. I’m a conscientious person. If people question me or my motives, it kicks me into a process of self-reflection, looking for chinks in my commitment, in my motives. My support people made this process and all the decisions associated with it bearable.

I’m going to spend the rest of this entry talking about the case physician in the rehabilitation hospital. He and I never met in person. Through several phone calls, he understood that my uncle did not want to do anything to prolong his life: no medications, no surgeries, no hospitalizations, no invasive treatments. He also understood my uncle’s desire to be as healthy as he could for the time he had left. The doctor agreed that continuing to regain or at least maintain his strength and physical capacity through physical therapy and occupational therapy were appropriate. He also recommended speech therapy to assess whether there were any swallowing or food management issues that could be improved. He helped me stay logical and pragmatic in the face of significant resistance from health care providers.

I remember at the end of one conversation he told me that this was not going to be easy. He told me I would have to stay strong in the face of well-meaning health care providers who thought my uncle’s decisions were wrong. He told me that well-meaning health care providers would try to “gaslight” me. I asked what he meant. He said, “They will identify crises that will require more extensive medical procedures and hospitalizations. They will want to call ambulances and administer emergency treatments to save or prolong your uncle’s life. They will call you at all hours of the day and night with emergencies you need to make decisions about right then. They will not want you to take time to think”. He concluded, “No matter how they gaslight you and how urgent the emergency they present you with, you need to go down your decision tree. Given his decision and your commitment to advocating for it, except for keeping your uncle comfortable and pain free, you aren’t going to do anything else. Right?”. “No”, I answered, “Good”, he said. “You’re clear. Stay that way. Call me any time you if you need me. I’ll call you when I need you”.

He was right. Nurses called me at all hours of the day and night. The preferred time seemed to be 3 a.m. and each emergency required my approval of immediate hospitalization. Sometimes they called 911 in direct contradiction to the “no 911” directive. Twice they called to inform me that ambulances were on the way. In both cases, I refused them. The first time the nurse said, “That’s what your uncle said. We hoped you’d have more sense.” His advance directive paperwork was misplaced multiple times. The post-it notes the case physican left to reinforce the directives in his chart were either removed from the chart or the workstation, or accidentally covered up, leading to the ordering of multiple tests and procedures I had to then refuse. Late one night they called to tell me my uncle was having mini-seizures. They wanted to hospitalize him for tests. On another occasion, they thought he was throwing blood clots and that the circulation in his right leg had been cut off. On both occasions, I was lucky that the case physician was available to talk me through the crisis. He asked if I would allow surgery. He asked if I would allow any treatment beyond pain medication. My answer was “No”. The physician concluded, that it didn’t matter then if my uncle had had a stroke. Observation would confirm that diagnosis or not. It didn’t matter if he was throwing blood clots or if the circulation in his leg had been compromised. Again, observation would eventually confirm whether or not this was the case. Since we weren’t going to accept any kind of treatment, the diagnosis didn’t matter. Helping me work through the decision path, it became clear that to support my uncle’s wishes, all treatments had to be refused. He helped me understand that the health care providers in the rehabilitation hospital were only doing what they believed best, trying to prolong my uncle’s life.

These situations led me to repeatedly question my uncle’s desire to “let nature take its course” and my desire to support him in that decision. Was this the time? Could he still live a high quality life – if only we did this or that intervention? My experience as a health communication scholar and the support of my advocates allowed me to stay the course in each case, as did my uncle’s unwavering commitment to the path he’d chosen. As loved ones of those who are dying, our hope often leads us to accept medical intervention that will not prolong a quality of life and often only minimally lengthen the duration of life. Being a health care surrogate at end of life is not easy. It is, however, critically important in a culture that is death averse and within the context of a medical establishment that views death as a failure. Sometimes it is appropriate to rage against the dying of the light. At other times, it is a gift to allow a loved one to go gentle into that good night.

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

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.

The Florence Journals: Random Musings on My Birth Story, Grandparents, Literature & Identity

I was born two months premature in the front bedroom of my grandparent’s house on Lafayette Ave in Urbana, Ohio.

Urbana house

The house where I was born

My mother, who had turned 19 years old two weeks before, was alone during her labor and my delivery;  her parents were “out west” on vacation. When she realized what was happening she called a friend, who called a doctor, who came to the house. After my birth, I was rushed to the hospital where I stayed for the first month of my life. Weighing 3 pounds at birth, I had to reach the 5 pounds that would allow me to go home. From what I am told, I was lively, feisty, and alert from the first. I charmed everyone.

As a child, I was well loved, especially by my maternal grandparents, particularly my Poppa. He was the “unconditional love” person in my life. Poppa and I had the kind of connection I share with my son, effortless. We simply understood one another. Poppa died in 1974 when I was 16. He and my grandmother had started wintering in Florida several years before. Grandma had severe arthritis and the damp, winter cold of Ohio was too hard on her. We didn’t know that Poppa was ill before they left, but there was something between us as we said our goodbyes and hugged for the last time. I think both Poppa and I knew we wouldn’t see each other again. As my mother and her brothers made plans to bring him home, I knew that he would not make it. I sat down and poured out my heart and my love in a 14 page letter. Only after his death did I realize he hadn’t received my letter. The hospital returned it to my grandmother and she gave it back to me, unopened. I burned it as a goodbye to my Poppa, again precious words lost to the ashes. I wish I knew what I’d written, but that letter was a gift to my Poppa, not to me.

For months, I would laugh at a story or see something interesting and think “I have to tell Poppa”, only to realize that he was gone and that we wouldn’t get the chance to laugh together over whatever silly thing had happened or interesting fact I’d learned. As I understand it, my first words were “bite butter” and my Poppa gave me a bite of butter, the first of many. Poppa stayed with my sisters, my brother and me during the summer months while my mother worked. He sat for hours, day after day on the deck at Meadow Lake in Ohio watching my siblings and me swim and hang out with friends. I have trouble understanding that kind of commitment, that kind of comfort in just being someplace.

As a child, I loved bedtime stories, particularly those my Mother and my Poppa told me. Once they told me a story, I remembered it word for word and if they changed it even slightly the next time I asked for that story, I corrected them. As a mother who told my own children stories (and was corrected by them if I changed plot lines or wording, I know how difficult it is to tell the same story the same way each time, especially if you are making it up on the spot). I must have been quite a handful. I wonder if this is why they started reading me books. For me, books were magical. From those letters on the page pictures and movies emerged. I could see what they read. I could not wait to read. I wanted to be able to make those pictures and movies happen too.

I got my love of reading from my Grandma, as well as my love of culture and history. My Grandma told me I could read by the time I was 3. She helped me learn by teaching me to pick words out of newspaper articles. She gave me a red pencil and I would circle the ones I knew. I could pour over a newspaper for hours at the table in her dining room. Then, when I was ready, she would point to each word, ask me to read it, ask me what it meant, and ask me how to spell it. She also taught me to try to understand the meaning of other words through the context of what I could read. Later, she gave me abridged versions of classic novels. They came in a series and I loved getting the next one. Through this series, I read the books that would have the greatest impact on my early years, Wuthering Heights, Pride and Prejudice, The Hunchback of Notre Dame, Little Women, Great Expectations, The Count of Monte Cristo. I loved entering the world of a book. I still do. These books also taught me an appreciation of the complexities of the world, from unrequited love and oppression, to unfairness and hypocrisy. They taught me to treasure fairness, justice, love, compassion, a strong work ethic, and care for others.

When I was 14 years old, my grandmother took me to see the movie Nicholas and Alexandra about the last Czar and Empress of Russia. I have no idea why she picked this movie, but when it was over she said, “I have never been able to travel outside the America. You will. Someday you will go to Russia.” I think my love of travel was born in that moment. Later, I would live in Russia for a year, on a Fulbright Fellowship teaching at Kazan State University in Kazan, Tatarstan, Russia.

From my Grandmother, I also learned that I have an almost photographic memory. This skill runs in my family. Once I learned a word, I never forgot it. When I would try to remember things I’d read my grandmother would say, “Picture the page in your head. Can you see it? Ok, read it”, and I would. I had no idea this was unique. I thought that if I could do it, everyone could. This later made memorizing speeches during forensics in high school and college very easy. To this day, I can picture pages in my mind and read them to myself. I’m lazier with it now. This is one gift I haven’t refined. Perhaps because I read so much I don’t want to picture or remember everything.  I just want to know where I can find it again later if need be.

When I was little, after my bedtime story, and before I went to sleep, I loved to have my back rubbed, and my Poppa or my Mom would rub my back as I fell asleep. This is likely why I love massages so much today.  This is likely the foundation of my tendency to show physical affection easily and liberally. I’m a hugger, a toucher. I know how important touch is to health.

Because of my birth story, because of the gifts I received from my grandparents, because of many other factors that had formed my life trajectory, I have believed and still believe that my life is a gift and that much is expected of me. I believe I was born to make a difference in the world. This is not conceit. I don’t believe I am destined to change the world in any history making way. I don’t believe I am destined to have a big, splashy impact. I simply believe that those whose lives I touch should benefit, their lives be enriched, from our interaction, as my life was enriched through contact with my grandparents, as it is now enriched by those I know and meet. This is why I became a teacher. This contributes to my multi-tasking tendencies. This is why I’m not always good at just ”being”. At times, I do not know who I am unless I am doing something and what I am doing defines me. I’m working to both understand and moderate these tendencies. (Yes, I see the irony in my wording here. 🙂 )

On why I LOVE Daylight Saving Time!

Ok, so while I’m in Italy this year on a writing retreat and not teaching, “Fall Back Day” will not impact me as it usually does. However, I’m still happy that the European Union, like the U.S., and a total of 70 countries worldwide, practice Daylight Saving Time! Like many of you, I often feel like there are simply not enough hours in the day to do everything I need to do. So often I wish for just one… more… hour… Once a year, I get that hour and I “feel” as if I have more TIME. I wake up earlier. I am productive longer. I feel like there is TIME to get things done. I even feel as if there is TIME left over at the end of the day to relax! That is why “Fall Back Day”, the glow of it which carries me for about 7-10 days beyond the actual day, is my favorite day of the year.

So, why Daylight Saving Time?

Did you know that Benjamin Franklin, the U.S. inventor and politician, first proposed Daylight Saving Time in 1784 and that Germany was the first country to implement it in 1916? It took a while to catch on. Also, Daylight Saving Time hasn’t always been an hour. Sometimes it’s been ½ hour or 2 hours http://www.timeanddate.com/time/dst/.

The original idea was to maximize the daylight hours and, among other things, reduce energy expenditures. Conserving energy in times of war has been the most common reason for the implementation of DST over the years. The general consensus in study findings seems to be that even though we get up in the dark in the fall, the extra energy used then is more than offset by the energy saved by having an extra hour of daylight in the evening. I can only speak to having more energy myself for 7-10 days and getting more done.

History of DST

On April 30, 1916, Germany and Austria became the first counties to use Daylight Saving Time to conserve fuel needed for electricity production. They advanced the clock one hour until the following October. Other countries including Belgium, Denmark, France, Italy, Luxembourg, Netherlands, Norway, Portugal, Sweden, Turkey, and Tasmania adopted the same policy. Great Britain, Manitoba, and Nova Scotia  followed later in 1916. In 1917, Australia and Newfoundland began saving daylight. The U.S. didn’t hop on the bandwagon until March 19, 1918 when “An Act to Preserve Daylight and Provide Standard Time for the United States” was enacted. http://www.webexhibits.org/daylightsaving/index.html.

That first pass at DST lasted 7 months until Congress overroad President Woodrow Wilson’s veto to end it. During WWII, Daylight Saving Time reappeared, again as an energy conservation measure and it lasted in the U.S. from February 9, 1942 until September 30, 1945. From 1945-1966, U.S. states got to decide if they wanted to observe DST or not. On April 12, 1966, President Lyndon Johnson supported, and Congress approved, the “Uniform Time Act”. The only way around Daylight Saving Time then was for a state legislature to determine that an entire state would stay on Standard Time. In 1972, Congress allowed states with more than one time zone to decide independently for each time zone whether or not to follow DST or stay on Standard Time.

On January 4, 1974, during the Vietnam War, President Richard Nixon signed into law the “Emergency Daylight Saving Time Energy Conservation Act of 1973”. Congress amended the Act, and Standard Time returned on October 27, 1974. Daylight Saving Time resumed on February 23, 1975 and ended on October 26, 1975. In 1986, Congress decided that DST would begin at 2:00 a.m. on the first Sunday of April and end at 2:00 a.m. on the last Sunday of October.

Some areas in the U.S. don’t observe DST, specifically, Arizona, Hawaii, American Samoa, the Commonwealth of Northern Mariana Islands, Guam, Puerto Rico, and the Virgin Islands.

The “Energy Policy Act of 2005” extended Daylight Saving Time in the U.S. beginning in 2007. Since 2007, DST begins at 2:00 a.m. on the second Sunday of March and ends at 2:00 a.m. on the first Sunday of November.

In conclusion:

In the EU, DST begins at 1:00 a.m. Greenwich Mean Time on the last Sunday of March and ends at 1:00 a.m. GMT on the last Sunday of October. That means that in Italy, I get my extra hour a week before you get yours in the U.S. I’m not totally clear on the implications of tha, but I’m hoping to figure out a way to get both “fall back” hours.

Anyway, that’s the scoop on Daylight Saving Time. The rumor that a bunch of Congressmen getting drunk in a bar decided to dupe the American public has no merit. Check back with me next spring. I’m likely to be a bit less exuberant then, when I have to give my hour back, than I am now when I get one for free. Ciao and enjoy that extra hour of sleep!

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

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.

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

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

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

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.

The Florence Journals: Exploring the 15th International Ceramics Fair

Sunset on the Arno 10 4

Sunset on the Ponte Vecchio

I write to you at the end of an absolutely beautiful, warm, autumn day. It was sunny, but not too hot and there was an almost constant gentle breeze blowing. It was the perfect first day of the 15th International Ceramics Fair in Piazza Annunziata. It also runs tomorrow from 10-7. Sponsored by the Arte della Ceramica, the fair began in 2000 as a venue for ceramic artists from throughout Europe to show and sell their work. This year the fair includes 68 ceramic artists from Austria, France, Germany, Italy, Spain, and Slovenia.

In this post, I will simply let the beauty of the artwork speak for itself. These are just a few of my favorites.

Brown with river rock

Lovely earthenware vases accented with river rock by Vinicio Barcaccia of Italy. barcaccia.vinicio@libero.it

Blue Raku

Beautiful raku pottery by Christina Perrin of France. christine.perrin80@sfr.fr.

Love letters

Ceramic love letters by Catia Clinaz of Italy http://www.cuoriditerra.it

Emma work

Colorful pots and jewelry made by Emma Draghi of Italy – http://www.emma.draghi.com

Poetry

Poetry in pottery – art made out of the sentences, phrases, poems by Nicole Grammi of Italy – http://www.potterynicole.com

There are so many more examples I could show! The variety and creativity are impressive. While I generally take more general photos at events, today I wanted to feature the actual work of some of these artists and to do so, I gained their permission and credited them directly for their creations. The intellectual and creative property of an artist is her or his ideas made manifest. It is delightful to be able to share some of their genius with you.

The Florence Journals: Reflections on Connection and Child Birth

On September 22, 2014 my friend Andrew’s oldest daughter had her first child, a son. While this is his fourth grandchild, he is the first I’ve been around for. If, by around, I mean thousands of miles away in Florence, Italy. Since Tiffany went into labor, I’ve reflected a lot on pregnancy, labor, and birth. I remember when I was pregnant with Stefan, hearing the lyrics to the song “The Story Goes On” from the musical Baby. They had a profound impact on me.

“And all these things I feel and more
My mother’s mother felt and hers before
A chain of life began upon the shore of some primordial sea has
stretched through time and reached to me
And now I can see the chain extending
My child is next in the line that has no ending
And here am I feeling life that her child will feel when I’m long gone

Yes all that was is part of me as I am part of what’s to be
And thus it is our story goes on
And on and on and on and on”

I was overcome with emotion when I heard this song.  I spread my hands across my body, amazed both by the precious life I was carrying and the realization that I was where every woman who had ever carried a child had been. Every mother in history had shared the waiting. Some had shared the uncertainty, the fear. Some had shared loss. Ultimately, all the women in my line had known the reality of bringing forth new life, some into contexts of privilege, some into pain. Some precious lives were cut short. Some were long and fruitful. But the chain from those women, my kin, was unbroken through time to me. Mother to mother to mother to mother for countless generations, and now, I was carrying the line forward. And now I was on the brink of becoming a mother. It felt overwhelming, but also calming to recognize the long line of women who had gone before me, whose lives led me to this point. I also felt hopeful for all the women who might come after me, continuing the line of women birthing children.

I felt a strong connection to my mother, to her mother. I called my mom to share these lyrics, these feelings with her. We cried. We laughed. We talked for hours. Our connection strong. We had a common understanding that I was carrying into the future.

Today I wish for Tiffany this joy of connection, of realization, of awareness of all who have come before and her contribution to all who will follow.

  • Baby is a musical with a book by Sybille Pearson, based on a story developed with Susan Yankowitz, music by David Shire, and lyrics by Richard Maltby, Jr. It concerns the reactions of three couples each expecting a child. The musical first ran on Broadway from 1983 to 1984.