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healing, even if not a cure. Even if we don’t understand all the root causes of diabetes or retinopathy, as patients, we can reflect on what we do know and how we can help others live more fully with the disease. As medical professionals, researchers, and scientists, that fear is something we can seek to eliminate.
PHOTOS OF THE MEANING OF DIABETES
To put these thoughts of the diagnosis and the meaning of diabetes in visual form, the photo below represents the day of my diabetes diagnosis (Fig. 3). It is labeled “unnatural” because having diabetes meant I would need to take some form of insulin injection every day for the rest of my life and should avoid sugar. I might go blind when I grow older or lose my kidney function. These things are unnatural, especially as a young child, represented by the bright orange slash. The slash appears among the ground and the grass of the earth, meaning growth and natural life. Although originally, the photo was about the diagnosis of diabetes, it also relates to its complications, such as retinopathy. Having retinal surgery is unnatural, as some blood vessels are sacrificed in order to save others and to preserve the site for long term. Although some eye procedures can be expected at an older age, it is unnatural, and frightening, to have surgery at age 25.
This next photo (Fig. 4) of a cell block also represents my thoughts of having diabetes and diabetic retinopathy. I took this picture at the Eastern State Penitentiary in Philadelphia, Pennsylvania. As the website states (http://www.easternstate.org/), the Penitentiary was once the most famous and expensive prison in the world, but stands today as a world of crumbling cellblocks and empty guard towers. My eyes used to be unscathed by disease, but have slowly deteriorated, like the plaster on the floor of the cell and the table that has fallen down from the weight of gravity over the years. My eyes show
Fig. 3. Unnatural.
Living with Diabetic Retinopathy |
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Fig. 4. Hydrant.
evident signs of damage in the pin-points of burning laser that penetrated my retina, and my lack of peripheral vision.
The room (and my sight) is not gone, however, because the building has not collapsed. The structure remains intact. Although my eyes may be ragged and somewhat worn out, they still perform the job that they were intended to do. I can see. I realize the room will not be restored to complete newness, but it can be cleaned and maintained. Keeping my diabetes under control and my body healthy, there’s hope that I will be able to see for my lifetime.
It is a wonderful thing to have vision, to experience life in color, to read, to watch the clouds move mysteriously on an overcast day, and to be able to turn my head and see my son when he was younger, yelling, “Watch this, mom,” from the playground. As he gets older, my eyes soak in the shape of his face and the curl of his hair and study the speckles of light in his eyes. I can see, and my prognosis for continued vision is very good. Each year, I schedule an appointment with Dr. Gardner, and my eyesight remains stable.
Rather than destroying the retina and damaging vision, we need to find easier, gentler ways to treat diabetic retinopathy to detect ways of catching the disease earlier so the fear of blindness is much less. That is what is important to us who have retinopathy. But scientific research to find a less destructive treatment is only part of the story. Behind every project or procedure, there’s a human element––a person who is frightened, wondering whether he’s going to go blind. He’s giving his eyes, one of his most valuable possessions to you, the clinician. Besides vessels and fluid, what do you see? Do you see the way they are looking at you for hope? Do you see how they are afraid that they might go blind? They don’t want to go through laser treatment. They are afraid there will be complications with the surgery, and they will go blind. They won’t remember the hue of the sky or the color of the cornfield. What did snow really look like? And what did the shadow of my toddler’s head look like at night? This person with diabetic retinopathy might go blind. And they are looking to you for hope. Regardless of your relationship
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to research, there is a patient, not a retina, who needs hope. What do you see? How can you give them that hope? How can you communicate trust to them? The best advice I can give is to look them with a soft face and tell them that you are going to do whatever it takes to preserve their sight. Their probability for continued eyesight is going to be very good. There are other promising methods for treatment, and you will make sure that they are getting the best treatment possible. This is really seeing. How can you improve your eyesight, your communication of hope to the patient? If you give me laser surgery treatment, you’re treating maybe half of my disease. But if you give me hope that I won’t go blind, you treat the other half.
Perhaps some of you have diabetes, or have loved ones and friends who have a chronic illness, or have diabetic retinopathy. This personal connection is what stirred you. Maybe your interest also comes from a deep desire to improve the lives of so many who suffer with diabetes and its complications or the science of discovering a cure or a breakthrough in treatment. For me, understanding the experience of diabetes is not only a research interest, but a personal quest. My hope is that you will see what having diabetes, and diabetic retinopathy, means to someone with diabetes, and you will understand how very important your work is to those of us who have this chronic illness.
The research in this book is groundbreaking and exciting. Research like this has preserved the eyesight of myself and many others and improved our quality of life. Over the past 20 years, I have seen many outstanding medical achievements in diabetes care: blood glucose machines, which achieve accurate results in 5 s, short-acting human insulin, needles which come in ultrathin shapes and sizes, and the insulin pump, continuous glucose monitoring and new advances in knowledge, medication, and technology that have made it possible for people with diabetes to live long, productive lives.
Ultimately, I hope we will be able to find a cure for diabetes. Diabetes is a demanding, frightening, exasperating disease. I fully support research that finds ways to make it easier to live with the complications of diabetes. As a fellow researcher, a patient, and as a friend, I thank all of you reading this chapter who have worked to preserve our eyesight, in whatever way. I encourage you to continue to find research to improve the lives of those with diabetic retinopathy, not only to restore sight but also to give hope.
REFERENCES
1. Charon R, Spiegel M (2006) Reflexivity and responsiveness: the expansive orbit of knowledge. Lit Med 51:vi–xi
2. Charon R (2004) Narrative and medicine. New Engl J Med 350(9):862–865
3. Charon R (2001) Narrative medicine: a model for empathy, reflection and trust. J Am Med Assoc 286(15):1897–1902
4. Charon R (2004) Physician writers: Rita Charon. Lancet 363(9406):404
5. Stuckey H, Tisdell E (2010) The role of creative expression in diabetes: an exploration into the meaning-making process. Qual Health Res 20:42–56
6. Stuckey H (2009) Creative expression as a way of knowing in diabetes adult health education: an action research study. Adult Educ Q 60:46–64
Part II
How Is Diabetic Retinopathy Detected?