Living with Diabetic Retinopathy: The Patient’s View

From this insider patient perspective, diabetes is different than when it is viewed as only a science. It takes audacity to inject a needle under the skin four or five times a day or to start an insulin pump. It requires persistence to handle a disease that is relentless. It takes understanding to put yourself in the place of a patient who crawls on the kitchen floor while trying to get a cup of juice, trembling in sweat and fuzziness. It takes courage to accept the news that you have diabetic retinopathy, and you need immediate surgery to prevent blindness. From a distance, the decisions about medical care and diabetes treatment look different than when they are happening to you.

Until there is a cure for diabetes and retinopathy, we need to continue to search for the best advances in medical care, and how our actions are affecting those we serve. We need to listen to the experiences of our patients to balance our scientific knowledge about the disease. Rita Charon, a general internist and literary scholar, focuses on the outcomes of documenting the experiences and narratives of patients, and how these narratives function in the construction of knowledge [1–3]. Charon [4] said she “came to understand that I had accrued deep knowledge about my patients that remained unavailable” because she had not written down the stories of the patients (p. 404). Sharing what she has learned with her patients is therapeutic, often deepening their mutual commitment and investment. She went on to say, “I feel privileged to have discovered how to fortify my medicine with the narrative gifts of perception, imagination, curiosity, and the indebtedness we listeners accrue toward those we hear.”

The chapter begins with my personal experience of having diabetes and diabetic retinopathy. Toward the end of the chapter, there are stories included from other individuals who’ve mentioned their experiences with diabetic retinopathy. Within the narratives, there is a common thread of fear of the unknown in the foreground, yet a promise of hopefulness. There is hope that we will find a cure for diabetes and that we can make the treatment for retinopathy less destructive.

MY PATIENT EXPERIENCE

It is difficult to imagine a life without eyesight or world without shape and color. When much younger, I used my eyes to draw, to write, and to see the world through the imagination. To stare at the clouds and dream of dragons, ships, and explorers across the blue vastness was one of my favorite hobbies. During my kindergarten years, my eyesight began to blur—very slowly—until I could no longer see the blackboard clearly in my classroom, and the teacher moved my seat to the front of the class. Signs looked fuzzy, and trees no longer looked like they had leaves, but were morphed lumps of green, yellow, and orange colors. This was my first experience with myopia, corrected with glasses, and the world was restored. If only all problems in the 1970s could have been solved with a glass lens and a plastic frame! From that young age, I’ve been wearing some sort of corrective eyewear and have always respected the power of the eyes.

At the age of 12, I was diagnosed with insulin-dependent diabetes. My mother noticed the symptoms of diabetes—constant thirst, with my drinking nearly a gallon of milk at a time, and frequent urination, every hour on the hour. She knew the symptoms because her mother had lived with type 2 for a number of years before being diagnosed. The time in the hospital was fuzzy, but friends and teachers would ask what it was like to give

myself shots and what foods I was “allowed” to eat. At that time, I didn’t want to talk about my diabetes. My disease was something I would have rather ignored. I always gave myself my shots, but didn’t frequently check my blood sugar. It wasn’t something that seemed that imperative. Certainly, I understood that one of the primary complications of diabetes was blindness, but I didn’t want to think that it could happen to me. I was young and felt indestructible, but had no realistic grasp of what the elevated blood sugars were doing to the tiny vessels in my eyes. I had no idea at all—until my first visit to the office of ophthalmology in 1995 after my left eye had hemorrhaged.

I had been taking a shower when I first noticed a spider web off to my left. The black swirl appeared ominous against the white porcelain. Although I tried to whisk it away, I couldn’t seem to reach the shadowy web. Terrified, I realized it was inside my eye, not an external web. Hundreds of thoughts burst into my mind. What is it? What’s happening? Is this a complication of diabetes? Am I going blind? The ophthalmologist, Dr. Gardner, assured me that he would do his best to prevent blindness, to stop the progression of the disease. But, that would mean immediate surgery.

At first, it was difficult to understand what having proliferative diabetic retinopathy meant. Maybe it was the suddenness of the onset or the startled reaction of the diagnosis, but my memory is somewhat cloudy. In my recollection, it was explained that my blood vessels were trying to get oxygen, and to maintain adequate oxygen levels, they started to form smaller blood vessels. Unfortunately, these vessels were much more tenuous and fragile than the original. They broke easily, and what I was seeing was some of the blood leaking into the retina and vitreous, causing floaters. It looked like a shadow moving across my eye, rather than something definitive. It was shapeless, and I watched the kaleidoscope of blood start as a large woven mass, then slowly break into little parts over the next few hours, eventually forming a fog which hindered my sight for several months. At that time, I didn’t understand that the technical name was neovascularization. I simply knew that things were not as they should be, and that my eyes were calling for help.

On the day of my appointment, I entered a small room with bright cinder block walls. Humming sounds and drips were ominous, as I waited for the unknown. Dr. Gardner asked if I had any questions before beginning the hour-long procedure. “No,” I told him. “But please be careful. I know you’ve done this a 1,000 times before, but I’m scared.” Clasping my hand in his, he silently communicated trust. He encouraged me to be strong as he glued the round stabilizer to my eyelid. I tried to blink, but the surrounding metal resisted motion. He turned his back to prepare a syringe of relaxant solution. “You might feel a pinch,” he said, as what felt like a 6-in. needle penetrated my bottom-left eyelid. Wincing, I adjusted the Sony headphones over my ears so I could hear the music of Enya rather than the chilling drip, drip, drip around me.

With my chin and forehead trapped against steel, Dr. Gardner skillfully aimed the first laser shot. At first, I didn’t feel pain. Two, three, still nothing. Twenty, thirty, forty, the back of my eye pinched. Two hundred, three hundred. My eye ached from the sharpness. As the doctor consoled me with, “You’re doing fine” and “Hang in there,” one strong emotion surfaced: anger; anger at my eyes for being imperfect, anger at myself for not keeping my diabetes in control, and anger at my diabetes for being so cruel.

For a day or two, I wore a patch over my eye and slept. As the patch was peeled away, things appeared brighter than before, but not unbearable. The room felt full of

sunbeams, even on the somewhat cloudy day. The white-painted walls mingled with the space in front of me, and it took a moment to find the dimensions of both, where one started while the other began. After the adjustment, I could see the shapes of my lamp, the bedposts, the pillows, all of my personal books, and items within the bedroom. This familiar sight reassured me that the surgery was successful, and I felt the tension leave my body. The whiteness and disorientation faded over the next few hours, but the sensitivity to light and reduced peripheral vision remains.

What has helped the most in getting through this complication is the attention of the ophthalmologist himself, Dr. Gardner. My experience of having a physician who is soft-spoken and compassionate has soothed my fears and communicated trust. His ability to give undivided attention, and remembering to ask questions about my family or a personal situation, has connected me with him. He is attentive and gently touches my shoulder when he walks in the room to ask how I am doing. His personalized interactions have made the difference in my optimism about the future of my eyesight and improved quality of life. When my eyes don’t seem quite right, or I am experiencing a new symptom, such as flashes or unusual coloring, I can call or e-mail him to ask him whether it is necessary for me to come for a visit, or whether these side effects are “normal” in patients with diabetic proliferative retinopathy. He is responsive and respects my value as a patient and as a colleague. These are qualities that have helped me both physically with my retinopathy as well as psychologically with the anxiety associated with the complications. I am indebted to his skill as a physician, his vision as a researcher, and his personal mission to help all patients see to the best of their ability. These are qualities which help physicians continue to excel in their practice.

The complications of retinal surgery are difficult to adjust to, and it requires a supportive physician and patient interaction to be successful. Even after 15 years of living with the disease, I’m not used to the difficulty of seeing at night and in bright lights. This was a complication that I knew would be a probability, but it is very different when actually going through the experience. One spring, I took a trip to Washington, DC, with four of my childhood friends. We were amazed at the marble steps and pillars of the Lincoln Memorial, commemorating the 16th president of the USA. All of us walked the low steps that led to the central hall, where the solitary figure of Abraham Lincoln sat. Along the side walls were carved inscriptions of the Inaugural and the Gettysburg Address, sending us the message of equality and a new birth of freedom. After viewing the monument, my friends started to walk down the stairs, as we were planning to walk around the National Mall. I was still looking at the marble Lincoln, and as I turned around, I realized I was alone. I walked out to the front of the monument and shaded my eyes from the glaring sun. As I looked down, all I could see was a white slate, instead of distinguishable steps. I knew there were steps there—I’d walked up them and my friends walked down—but where was the next step? My eyes had not adjusted, and I began to get anxious. I called out to one of my friends, “Tammy,” but she didn’t hear me. I sensed there were many other people around me, but the world was just so sparkling white that I couldn’t really see anything. For a moment, I was paralyzed, standing at the top of the steps, staring blankly. A wave of panic rolled through my forehead. I scrunched down and walked on four limbs like a crab down the stairs. My friends were laughing at the bottom of the steps, “What are you doing?” because they thought I was trying to

be funny. I told them I couldn’t see, but I’m sure they didn’t quite understand. Honestly, I didn’t understand. Now, I’m aware that I need to be careful in places where there is a shift from dark to bright light. Something simple like walking out onto the patio of my house on a sunny day requires me to tap the space in front of me to find the concrete step below. It’s a reminder that I need to be cautious and that my eyes need time to adjust.

This also happens when I go from light to dark areas. I used to be one of those people who would sneak into a movie theater while the previews were playing, just in time for the feature presentation. Now, I’m one of the first to sit down while there are still dim lights in the theater. My 12-year-old son and I were going to the movies, and we were a few minutes late. He stopped and asked if I was OK. With popcorn in my right hand and a soda in the other, it was difficult to find another hand to grab onto his coat to make my way through the aisles. Coming into a poorly lit room makes it impossible for me to move forward until my eyes adjust. It takes me at least 5 min to begin to see silhouettes of images or people in the room. I can no longer trust my sense of sight because my eyes have been damaged by laser surgery and years of high blood sugars; instead, I intently rely on the sense of feel and memory.

Another simple event that causes difficulty is heading out to see the fireworks at dusk. I had an experience of following a friend up a road that led to a grassy path. My friend went ahead, but I wasn’t sure where the road stopped and the grass began. It appeared as though the terrain had changed, but the road in front of me looked like a dark lake, and I wasn’t sure I could trust what it was seeing. I could tell that other people were moving around me, quite quickly, as I stepped quietly, one toe at a time to find my way. My friend turned around and took my arm, leading me with her across the grass. It’s times like these that I am keenly aware of my altered vision.

An enjoyment of mine is going to amusement parks, but having reduced vision makes seeing through the indoor queue lines quite difficult because of the sudden shift from light to dark. Recently, we were in Disneyland, California, ready to ride “Indiana Jones Adventure.” The entryway halls were dark for effect, with a strange-looking hologram on the wall. I squinted, but still couldn’t quite make out the image. It was all I could do to navigate the left-to-right line to keep up. I held onto my son’s shirt so that I didn’t lose my way, but I heard the people in back of me grow impatient. They stepped on the back of my shoes and said, “move forward.” They could see fine, so what was my problem? After all, I didn’t look blind, and my healthy, strong body shouldn’t have needed assistance.

My vision issues don’t just stop with transitions from dark to light. I’m concerned about when I’m going to have my next episode of severe floaters in my right eye. I’ve been bothered by these floaters ever since my surgery. I’m never sure if my sudden loss of vision is going to be permanent. At the most unfortunate time, when I was trying to conduct my dissertation work, I developed a large floater in my right eye, making it impossible to see. The reason and timing for the appearance of floaters seem to be unpredictable—I was watching television and noticed the fireworks explosion of fluid filling my eye. As if writing a dissertation isn’t stressful enough, I was trying to meet the deadlines with only one functioning eye. I tried to look around the web by moving my head, having to rely on my left eye to read. I think about these floaters often, and wonder when the next one might hit. The rational I knows it will be a few weeks, or months, until the cloud dissipates, but a side of me also wonders whether the obstruction