Interview with Pete Kellett
On the Diagnosis:
How long has it been since you were diagnosed with MacTel?
About two years, but about four and a half years since my optometrist noticed something odd with my retinas and sent me to an ophthalmologist. They misdiagnosed me with bulls eye cone dystrophy based on the dark circles around my maculae.
What are some of the first changes you noticed in your vision?
Sensitivity to bright light, and difficulty with night vision. Then difficulty with fine detail such as small print and face recognition.
What was your experience in getting a diagnosis?
I was misdiagnosed with cone dystrophy for the first couple of years. The first question I was asked in my first diagnostic appointment was, “Have you ever been a sun gazer?” I had no idea what that was, and had to look it up online when I got home! I received a correct diagnosis of MacTel only when I sought a second opinion at a research hospital.
When you were diagnosed, what information did you receive about MacTel? Where did you go to learn about MacTel? How well do you feel you understand the disease?
I was told about the MacTel Project and sought online information through the MacTel site, and through other online resources. I have a basic understanding of what is known about the disease from a medical/clinical point of view. I wish an explanatory visual model existed that captures the origins, progression, and impact of the disease, but I don’t think that’s available yet. I also wish there was more information on how to adapt one’s life to the disease, what to expect, and where to turn for help when first faced with the shock of the diagnosis.
On Living with MacTel:
What is your biggest challenge in daily life? (E.g. using a computer? Reading? Driving?)
All of the above, and the eye fatigue that comes with the daily struggle to fully participate in our visually oriented and screen intensive world.
How have you adapted your lifestyle to overcome these challenges?
I switched to a large screen computer quite early. I also read books only on an iPad. I use a larger format iPhone. I only drive close to home where I am familiar with the roads and signs, and during daylight hours only. This puts more pressure on other family members to drive, but it is better to be safe. I need to sit close to the TV and in movie theaters/spectator events. Labels and instructions require a good quality magnifying glass. Even then, some smaller information is impossible to see. If visiting a new restaurant, I look at the menu online first to avoid difficulty in small print/low light situations. I mostly avoid restaurants that only have menus up behind the counter, as these can be difficult to see, and I feel that they ought to accommodate low vision people more effectively. I have learned to rest my eyes when needed. On a more humorous note, my wife and I joke that we only buy cheap drinking/wine glasses these days as I knock over so many! Given that the brain fills in the missing information of blind spots, I often don’t see them, and clumsiness has become an everyday challenge. I also learned to use my fingertips to double check that I have shaved my face completely!
Has having MacTel impacted your work? Your family life?
So far, I am able to continue my professional work as a professor effectively. There are some challenges. For example, classroom media stations are not adapted for low vision instructors. State schools do accommodate students with accessibility needs, but faculty needs often fall between the cracks. There are periods, such as during heavy grading times, when eye fatigue is severe. I grade papers only in an online format so their size can be increased. I avoid really difficult things like tracked changes used for editing.
I believe that MacTel, like many other diseases, is embedded into our relationships, and our life narratives and sense of self, in important ways. The disease changes our close personal and family relationships, and the quality of our relationships has a significant impact on the experience of the disease.
Are there specific environmental conditions that are visually challenging?
Bright days, dark conditions, and night vision. Gloomy days are a blessing!
Do you have any advice for someone newly diagnosed with MacTel?
Take charge of your health care, and the broader life story that you find yourself in. Seek out whatever online information is available. Connect with an expert from the nearest MacTel research site for diagnosis and observation/treatment. Create or join a support group of people who understand and who care. This will preferably include someone with vision problems, ideally with the same disease. Enjoy, and make the most of, the periods of stability in your vision.
Journal your experience. It is useful to look back over time and understand and be mindful of how you have changed, what the key challenges are in everyday life, how it impacts relationships—and how relationships impact the experience of the disease, which moments you handle well and not so well, and what you need to work on.
Focus on positive emotions and responses as much as possible, such as hopefulness and humor, rather than on negative ones such as fear, anger, frustration, blame, and disappointment. At the same time, allow yourself to be where you are in the experience, but push towards the positive as soon as possible. Make the most of the visual world through art, color, nature, or whatever you enjoy looking at. Be kind to yourself.
Learn to be clear with others about what you can and can’t do. Most people naturally assume that what they see is what you see, but this will not be the case. For example, you can avoid misunderstandings if you explain to people that you can’t recognize faces until close up, if that is a struggle for you.
Learn to ask for help. If you need workplace accommodations, be clear about what you need. If you need help in restaurants, post offices, or airports, which are places that tend to provide challenges of lighting and/or print/information size, get used to speaking up and asking for help.
Adapt as needed, and equip yourself for low vision. Recognize that the world is designed by, and largely for, people with “normal” vision. So you will have to adapt to the world, perhaps more than the world will adapt to you. For example, it is possible to zoom so that documents and images can be enlarged on screen, but the zoom command itself does not zoom! As your vision becomes challenging, you may need to adjust your expectations about where and when you can drive. Be safe—be real about where you are and what you can do. You may need to avoid night driving, or driving in unfamiliar places. Depending on where you are in the progression of the disease, you may need a good quality magnifying glass with a light (expect airport security to check this closely!), or a bigger computer screen. Your optometrist may have good advice on useful devices. They may even sell some. Technological progress is on our side, but the world you really want will probably seem like it is five years away.