Patienthood and Communication
A Personal Narrative of Eye Disease and Vision Loss
Author and subject Peter Kellett highlights his important interactions with health care providers, family members, friends, colleagues, students, and others that provide shape to his journey. Kellett displays a compelling capacity for self-reflection in his descriptions of the life changes his vision loss imposes upon him, among them changes to his identity, in relationships and life plans. Adaptation and flexibility reveal themselves as central tenets of his learning to become a self-empowered patient. Perhaps the most crucial element to his adjustment is, however, positive communication, which is depicted throughout the book as the driving force in Kellett’s journey into patienthood.
Table Of Contents
- About the author(s)/editor(s)
- About the book
- This eBook can be cited
- Introduction: Health Communication—An Eye-Patient’s View
- Year 1: Mid-May 2011 to Mid-May 2012
- Chapter 1: A Double Bulls-Eye
- A Diagnosis and a Name
- Chapter 2: Six Months to Rebalance
- Searching for Clues
- Holding On and Letting Go
- Falling Back—Flipping Forward
- Chapter 3: First Injection: December 23rd 2011
- Learning to Share My Story So Far
- Chapter 4: Second Injection: January 20th 2012
- Hopeful Communication
- Counting Blessings
- Differing Voices and the Beginnings of Self-Empowerment and Advocacy
- Chapter 5: Third Injection: February 17th 2012
- To Share or Not to Share: Learning to Express
- Chapter 6: Fourth Injection: March 20th 2012
- Dreams, Metaphors, and Reality
- The Reason We Came into Each Other’s’ Lives
- Sharing Ancient Footprints
- There’s Plenty to Be Thankful for
- Chapter 7: Fifth Injection: April 20th 2012
- Deeper Characters with Real Lives
- The Care of Help
- DC and Early Summer
- My “Welcome Back” and Workplace Worry
- Year 2: Mid-May 2012 to Mid-May 2013
- Chapter 8: Sixth Injection: May 25th 2012
- Sharing and Savoring Good News
- Adaptation and Self-Advocacy
- Being Handled, Muddling Through, and Owning the Narrative
- Chapter 9: Seventh Injection: July 27th 2012
- Savoring Life
- Back to School After a Year’s Leave
- Losing Bud
- A Family/Genetic Connection?
- Another Eye Exam
- A New Car and a New Journey
- Future Plans and a Family Narrative Emerges
- Chapter 10: Three Month Follow-Up: October 26th 2012
- Sharing the Personal News
- Taking Stock: The Difficult, the Odd, and the Awkward
- Being Fortunate
- Chapter 11: Six Month Check-Up: April 26th 2013
- The Appointment and Cautious Optimism
- A Reality Check
- Year 3: Mid-May 2013 to Early July 2014
- Chapter 12: The Summer of Love
- Night Sight
- Our Wedding and Aftermath
- Reshaping my Academic Identity
- The Kindness of Strangers
- Natural Rhythms
- Chapter 13: Stability: Living and Working as Well as I Could
- Navigating Work Challenges
- Another Check-Up
- The Light and the Dark of Stability
- Year 4: July 2014–July 2015
- Chapter 14: Unanswered Questions—In Search of What, When, and Why?
- An Awkward Conversation
- Onward in Search of What, When, and Why?
- Chapter 15: A New Diagnosis and Learning Self-Advocacy
- Learning Self-Advocacy
- Important Moments of Learning
- A Moment of Sharing with Students
- An ERG Experience and Beyond
- Chapter 16: Disease as Relational and Family Narratives
- Getting Involved
- A Twinned Narrative
- Solo Time
- Relational Time
- Chapter 17: Getting to the End of a Good Year—Getting to Miami
- Six Month Check-Up
- Small and Big Moments That Make a Good Year
- Year 5: July 2015–July 2016
- Chapter 18: Sharing Experiences
- Summer Weddings
- Back to School—Sharing Personal Experiences
- Chapter 19: Red Dots, Invitations, and the Communication of Care
- A Shaky Stability Narrative
- Travelling Alone
- Invitations to Share
- The Three Month Follow-Up and Beyond
- Chapter 20: Social Media, Connectedness, Struggle and Hope
- Online Encouragement, Connection, and Hope
- My Online Interview Narrative
- Chapter 21: Towards the End of Year Five
- The Impact of Fatigue
- The Impact of Sharing Stories
- A Weekend Away
- Learning From Others Stories
- Relationships, Meaning, and Life Together
- Series index
I would like to thank my wife, Hema, for always being there as we lived through the first five years of this story together. I truly appreciate all of her coaching, and supportive and caring communication that held me together as I went through this experience. Thanks to my mother and father, Mary and Albert Kellett, and David, Tim and Paul, my brothers—they have all helped me in their own unique and personal ways. In particular I acknowledge David, my twin brother, who also shares this disease—we are bound together by our genes for the good, the bad, and the ugly! Thanks also to my Indian Family: Dad, Mummy-Ji, Chitti and Jayanth, Reena, Deepak, and Sagarika. The relational communication and friendship of several friends have been crucial in keeping me positive and hopeful in this journey. These include: John Gribble, Art Murphy, Steve Kroll-Smith, John Nostrand, Alie Buckley, Bud Goodall (deceased), Joe Gemin, and others.
I owe much gratitude to my care-full Medical and professional team. These include: Dr. Johnson of Oman Eye Care. Dr. Jason Sanders of Piedmont Retina Specialists, Dr. Vishak John of Wake Forest Baptist Medical Center, and Dr. Phil Rosenfeld and Cristy Lage-Rodriguez at Bascom-Palmer Eye Institute at the University of Miami. Thank you all for helping me so much. Thanks also to the hard working, dedicated, accessible, and kind people at the Lowy Medical Research Institute (LMRI), particularly Jennifer Trombley, Dr. Lea Scheppke, and Dr. Martin Friedlander. Keep up the great work! ← vii | viii →
Special thanks goes the Lowy family for their vision and generosity in funding the research into MacTel. We are on the verge of unlocking its mystery, and all the good that this will bring, because of you.
I would also like to thank all of my colleagues and friends in the Disability Issues Caucus of the National Communication Association for enabling me to develop and present my ideas relevant to this book at the conference.
Finally, I would like to add a personal note of thanks to series editor Gary Kreps for his encouragement and the freedom he has allowed me to tell this story just as I lived it.
Health Communication—An Eye-Patient’s View
Immediately after being diagnosed with degenerative retinal disease in 2011, I began journaling the experience. I had never been a journal keeper, but something compelled me to document the fine fabric of this unfolding story in which I suddenly and unexpectedly found myself. I wrote what I thought were the important moments along the way. I tried to remember important and interesting conversations as they were happening, and write them down as soon as I could. I tried to capture the internal (thoughts and feelings) and external (talk and behavior) aspects of my experiences, and the context of the time and place physically and relationally that they occurred, as I knew these details would soon disappear from memory with time. What follows is a synthesis of these journal notes into the story—my personal narrative account—of the first five years of adapting to a disease (MacTel) that would cause me progressive and irreversible vision-loss. The story is told in short chapters that are most often organized around, and punctuated by, diagnostic and treatment moments in order to capture the centrality of the disease and treatment to these five years. At the same time, experiential and relational themes recur, interweave, and change/evolve across the span of the five years, and each chapter reflects this interweaving of thematic threads. ← 1 | 2 →
Oddly, in retrospect, although I was engrossed with documenting my experience, journaling it allowed me a slight externalizing distance from it that was helpful and healthy. At times, I felt like I was just writing an interesting story in which I happened to be a character. Although, looking back, there were times when I did not always like how my character talked, thought, and behaved, it was distance that helped me to cope with the fear of uncertainty and looming blindness, and all that emanated from that fear. At the same time, in confronting the flaws of my own character—my propensity at times in the story to dwell in denial and fear; my slowness to take charge of the treatment; my patterns of responses that were often suffused with anger, disappointment, and self-pity, there was the opportunity for important learning and growth as a patient. For me, the meaning of patienthood was transformed as I embraced learning and growth as part of the disease process, and when I empowered myself to more actively and skillfully author the events that I now story here.
Crucially, the experience of these early stages of retinal disease and related vision loss taught me a great deal about the constant interweaving of communication and the disease experience in the lived experience of everyday life. The ongoing dynamics of relational and health care communication, and my particular disease experience, provide valuable insights and lessons more generally for those interested in health communication. Here, I will briefly explore the insights into the relationship between communication and disease I experienced through each of the five years documented, and where possible connect such insights to health communication more broadly.
The first seven chapters constitute part one of the book, and represent my experience of the first year with eye disease and vision loss. Part one tells the story of the first year (2011–2012), from diagnosis through early treatment. The year began with a regular check-up at the optometrist office. My optometrist noticed dark rings around my retinas and insisted that I go to an ophthalmologist. Suddenly I was a patient. More shocking, I was diagnosed with a degenerative disease for which there is currently no treatment or known cure. I sought information, definition, clarity, but there was little help I could find either in person from health care providers, or online. My early attempts to make sense and adjust through adaptation and communication in a low information quality environment are documented (Johnson & Case, 2012), as are the impacts of this shock on my sense of self, and my close personal relationships and priorities (Miller-Day, 2011).
In November 2011, I experienced dizziness and visual distortion but was put off from going back to my ophthalmologist until December at the six ← 2 | 3 → month mark, as planned. On returning to my ophthalmologist on December 23rd I was told that my right retina was swelling and bleeding, and that I needed an Avastin injection immediately. Poignantly, I was the last patient there, holding up their office Christmas party.
I describe the four monthly injections to follow that year, and the emotional, relational, and communicative impact of this intense period of treatment to save my right eye, which thankfully worked. Particularly noted are the impacts on, and impacts of, close personal, and familial relationships (Miller-Day, 2011).
As the first year closed, I also reflect on the various and often competing “voices” I was hearing on how I ought to understand and relate to this disease. The medical discourse was telling me one thing. Friends and family members were telling me other things. Sometimes these voices were competing, and they were often confusing. I had to learn how to sift through what people were telling me for ways forward for myself. I also had to learn how to tell people about the disease, and to not misunderstand their reactions and responses. I had to live without clarity, both of my vision and of relevant information. Finally, I also had to learn how to better balance the often competitive struggle between the dark and the bright side—between fear, anger, disappointment, and despair on the one hand, and hope, gratitude, and optimism on the other (Pitts & Socha, 2013; Socha & Pitts, 2012).
Chapter’s eight through eleven document my experience of the second year with the disease, represented as part two of the book. The second year began with the sixth injection into my right eye. It had responded well to treatment, and I was asked to return in eight weeks instead of six for the next injection. That stretch of two weeks was good news, a victory even. After this injection, and after spending some considerable time in waiting rooms and doctor’s offices, I reflect on the communication I experienced in these contexts. I also describe the rituals my wife, Hema, and I instituted to celebrate completing each treatment. I characterize this period as a “muddling through.” I had to adapt and change how I read. I tried to adapt to difficulty recognizing faces, and many other everyday communicative activities. For example, I became clumsier because of blind spots which, at different times, was a source or both relational frustration, stress, and humor for Hema and me (Hamilton & Vecksler, 2014; Scholl, 2013; Wanzer, Booth-Butterfield, & Booth-Butterfield, 2005).
I rekindled my long-time friendship with Bud Goodall, and our common health care experiences—his with terminal pancreatic cancer and mine ← 3 | 4 → with my disease, sparked a fascinating online back and forth of support, celebration, and humor, which continued until his death (Kellett, 2012, 2013; Meyer, 2000, 2012; Scholl, 2013).
Hema and I travelled to England and India to meet each other’s families, then I returned for my seventh injection which was my last, for now. I was declared a “success story” although I still had no definitive idea what disease I actually had, or why I had it. This began to pull at me as an uncomfortable mystery that needed addressing. I returned to school after a year away on research leave. My pal, Bud Goodall, died. My twin brother began tests for eye problems he was having, and a parallel if different journey as twins, across two continents and two health care systems, began to take shape.
During the rest of this year I document awkward moments, scary moments, dangerous moments, humorous moments, and poignant moments. Along with these, there were meaningful moments of connection with other people with similar eye problems, which I craved by this point in my journey.
Chapter’s twelve and thirteen tell the story of the third year of my disease and vision loss journey. Part three of this book begins with Hema’s parents visiting us from India to be part of our wedding. As we all get to know each other at close quarters, they begin to understand the everyday dynamics of my vision issues and how they affected Hema and mine’s everyday relationship.
I wrote and published my first paper on ocular health and disease and its impact on communication (Kellett, 2014). So began a major shift in my scholarly interests and identity around eye health, vision loss, and disability (Kellett, Buckley, & Frame, 2016; Kellett, 2017).
I travelled to Budapest alone to present a paper at a conference, and found the experience challenging and difficult. I also realized how much I had come to rely on Hema, and how fearful I had become when outside my comfort zone. In a classic dialectical tension, this reliance on the familiar was a source of frustration for her, but desired safety for me.
After the wedding, we went on honeymoon together after Hema’s parent left, and several humorous vision related moments are described.
Upon returning to school, I was teaching a graduate class in “Positive Communication” for the first time. In my introduction on day one, I told the class how my experiences with communication during my vision loss had been instrumental in my interest in creating and teaching this class. Simply, I told them that what people said to me along the way had saved me from despair and given me hope and comfort, and I wanted to explore this aspect of communication in a scholarly as well as personally meaningful way (Sullivan, 2013). ← 4 | 5 →
A few of my close friends began to share health challenges, and we began to weave our health related narratives together, in amongst other things we shared. Whether good news at the Cardiologist, or with a prostate condition, or with my eyes, support and celebration of good news—stability (however fleeting and even perhaps mythical)—was enormously helpful for each of us (Bodie & Burleson, 2008; Burleson, 2003, 2010; Burleson & MacGeorge, 2002; McCullough & Burleson, 2012).
My eye acuity returned to a much better 20/70 as the retinal swelling reduced more, and I put vision issues out of my mind as much as possible—enjoying the stability. There were moments, however, that reminded me of how fragile the myth and reality of “stability” were when set against its dialectical partner —decline—in a degenerative disease path.
The fourth year (Part four) is captured by chapter’s fourteen through seventeen. The fourth year began with a return to the Piedmont Retina Clinic for a one year check-up. Although the news was good—no swelling, and my edemas were dry, my retinas had thinned and I had many other unanswered questions. I did not believe I had Cone-Dystrophy, but I did not really know what disease I did have. I announced that I had decided to seek further advice at a “research” hospital, and this essentially ended my relationship with my ophthalmologist up until that point. It did, however, begin for me a much more proactive and empowered approach to my health care (Ledford, Caffrey, & Russell, 2015). I sought a second opinion at Wake Forest Baptist Medical Center and was diagnosed as having MacTel. I had previously been misdiagnosed. My Twin brother, David, was also going through a similar diagnostic process in London. He was eventually diagnosed with the same condition, indicating a genetic origin of the disease for both of us. We began to share experiences online in the form of short comments back and forth on Facebook Messenger. I joined the MacTel Project Group on Facebook. David and I began the long process of donating our genes to the MacTel Project’s global genetic study that was already underway.
My North Carolina driver’s license was due for renewal on my upcoming birthday, causing me much stress and worry about independence, and related issues, although I probably would have passed the vision test given how much my eyes had stabilized. My brother’s license was revoked in England, causing him more stress and worry than I had, as I was able to renew mine online.
Hema and I went to Bascom-Palmer Eye Center in Miami so that I could be officially diagnosed with MacTel by one of the MacTel Project ophthalmologists, and to donate a genetic sample for the research study. I also signed ← 5 | 6 → forms to donate my eyes to the clinic upon my death. David did not get to donate his genes for a while longer as they were, by this point, prioritizing the search for other family members with MacTel rather than direct siblings. Hema landed her dream job (or so she thought at the time), which meant she would not be available to help me as much on things I struggled with, but which also meant that she would be able to take care of herself irrespective of what happened to me. The ability to be independent was my dream for her, as much as it was my dream for myself, albeit in a different way.
Finally, the fifth year (Part five) of this experience is narrated through chapter’s eighteen through twenty one. Year five began with some reflection on the typical miscommunications that occur because of my low-vision condition. I began to be more proactive in dealing with such miscommunications. I also shared information about my eye condition more openly with students, some of whom surprised me by sharing information about their own eye and vision issues. In some cases this mutual disclosure became a sources of deeper connection between us.
I returned to Wake Forest for a check-up and, ominously, “two small red dots” on my left retina ushered in a period of more close observation and related worry. I was invited to give a talk to their residents and fellows which I agreed to do in the summer. I was also invited by the LMRI to share my story as a patient with MacTel to be featured on their website as part of their new informational and communication initiative (LMRI.net).
Hema and I revisited the topic of us having a child. We agreed to put fears of my possible future blindness, and the potential risk of passing the disease on to any child we might have, aside and try to start a family.
Vision loss, health, and disability became a closer part of my professional and personal identity. I got involved with the Disability Issues Caucus of the National Communication Association, and began talks with other faculty on my campus to create an academic program in Disability Studies.
Everyday struggles with vision and its interconnections with relationships, particularly around support and humor, are explored and exemplified.
I returned to Wake Forest for a check-up, and all seemed stable again. The red dots had disappeared for now—just as mysteriously as they had appeared. As Dr. John and I became closer and better acquainted, I firmed up plans with him to come and give a talk, and possibly to be part of their design process—providing them with a patient’s perspective on interior design for their new building which was, as yet, at the “dream stage.”
I pushed myself to become more productive with the writing and editing of several books I had planned (including this one), and I resolved to get these ← 6 | 7 → done before further vision decline occurred, which would make these things much more difficult.
My story was the first to be featured on the LMRI website, and this opened up more online and social media based involvement and connection for me with other patients (Yang, 2017). More people agreed to share their stories for use on the LMRI website. I shared the link to the interview with many people, and this also opened up communication in some interesting and meaningful ways.
Part five ends with a poignant domestic scene of supportive cooperation and complementarity of strengths. As Hema spotted the first of the ripe figs at the tops of our fig bushes—something I would find difficult—I pulled down the heavy branches for us to pick them together—something she would find difficult—and so, with this organic metaphor, the story of our relationship with this disease continued through that summer and on into year six.
- VIII, 296
- ISBN (PDF)
- ISBN (ePUB)
- ISBN (MOBI)
- ISBN (Hardcover)
- ISBN (Softcover)
- Publication date
- 2017 (October)
- New York, Bern, Berlin, Bruxelles, Frankfurt am Main, Oxford, Wien, 2017. VIII, 296 pp.