Meet Belinda Brasley, blind photographer, Twitterer, and author of the blog Losing Vision, Gaining Insight [1], in which she chronicles her transition to low vision living. "I sometimes feel like I am in a no-man's-land," says Belinda. "I am not legally blind, but I really have difficulty seeing ... and I am trying to adapt to my low vision as gracefully as possible." Learn more about Belinda's blog, including how she has learned to use her digital camera to create "a new way to see."
I am the oldest of four children and have always lived in upstate New York. I have experienced rural, small town, suburban, and urban life. Currently, I live in the city of Rochester with my husband, John and three children (Emily, 22, Samuel, 20, and Benjamin, 16). I have a B.A. in Communications from St. John Fisher College [2] and an M.Div. (Master of Divinity) degree from St. Bernard's School of Theology and Ministry [3].
I was a stay-home mom for a long time because our oldest two children were homeschooled from middle school all the way through high school. I went back to work three years ago and I work full time at Nazareth College [4], as an Executive Secretary in the Office of Multicultural Affairs. I work on Diversity Programming, which means I get to bring great speakers on to campus for the faculty and students to hear.
I have had steadily increasing myopia (near-sightedness) since I was six years old. One evening, about ten years ago, I felt a sharp, stabbing pain in my left eye and saw a flash of light. After this, I had what I thought was a new large “floater” in that eye. On my next visit to the eye doctor, I explained what had happened. He sent me to a retina specialist who took some pictures and diagnosed me with Vitreo-Macular Traction Syndrome [5].
My understanding is that there had been a small tear or rip in my retina, which was caused by “traction” (pulling, tugging, and/or pressure) within my eye. The doctor said it would probably heal itself over time. I was instructed to let my eye doctor know immediately if I saw any more flashes of light, which might mean retinal detachment. My eye doctor “watched” my left eye for years and kept me informed about some scar tissue that was building up.
Then, a little over a year ago, I developed Myopic Macular Degeneration [6] in my right eye, with bleeding from the abnormal veins. I have had two Photodynamic Therapy (PDT) laser treatments in that eye and about 11 shots of Avastin. The PDT treatments have left me with some central vision loss, and I am now on a regular schedule of Avastin injections to prevent further bleeding in my retina.
Editor’s Note: The US Food and Drug Administration (FDA) has approved photodynamic therapy (PDT) for macular degeneration treatment since April 2000. During PDT, a 10-minute intravenous administration of Visudyne (a light- or photo-sensitive drug) is followed by the application of a low-dose, non-thermal (light only) laser to the affected area of the retina. The laser activates the drug, which selectively seals off the leaking blood vessels without damaging the surrounding healthy retinal tissue.
Avastin is a drug that is FDA-approved for intravenous use in colorectal cancer. It is currently used on an "off-label" basis (i.e., via eye injection) to treat certain types of macular degeneration. At present, it is administered by injection directly into the eye after the surface has been numbed. The needle is very small and is inserted near the corner of the eye — not the center. During the injection procedure, the doctor will ask the patient to look in the opposite direction to expose the injection site, which also allows the patient to avoid seeing the needle. You can read more about these and other current treatments for macular degeneration at What Treatments are Available for Macular Degeneration [7] on the VisionAWARE web site.
During treatment for the Myopic Macular Degeneration on my right eye, the retina specialist kept a close watch on my left eye as well. He noticed that scar tissue from the original tear or rip was causing a lot of tension and stress on my macula and that my vision in the left eye was deteriorating rapidly. He decided it was time to perform a vitrectomy to remove the scar tissue. I am currently recovering from that surgery.
Editor’s Note: A vitrectomy is a surgical procedure that removes blood and fluids that have accumulated in the vitreous (a transparent gel-like substance that fills the interior of the eye) as a result of retinal bleeding, and is performed under local or general anesthesia. During a vitrectomy, the doctor makes an incision in the eye and uses a small instrument to remove the vitreous gel that is clouded with blood. The gel is then replaced with a saline (or salt) solution. You can learn more about the parts of the eye at The Eye and Vision [8] on the VisionAWARE web site.
The first Photodynamic Therapy treatment (PDT) was very scary. After the laser treatment, I could not stop crying. This was not because it hurt or was painful in any way, but because the whole experience was very stressful. I was scheduled to receive my first injection of Avastin immediately following the laser treatment, and I think the thought of both new treatments happening at once was overwhelming.
Following PDT treatment, I had to cover all of my skin. The drug made me light sensitive and so I was told to stay indoors (and even away from windows) for three days. My normal reaction to stress is to need sleep, so I mostly slept for the days following the first PDT treatment.
My second time was not nearly as bad emotionally, because I knew what to expect. However, after my second treatment I did notice a small “blind spot” in my central vision. Both PDT treatments were scheduled for Thursdays, and both times I returned to work on the following Monday.
As for Avastin injections, I hated them intensely at first. Now, I have become so comfortable with them that I don’t even get nervous. They do not usually hurt. I feel a lot of pressure for a couple of seconds and then it is over. My eye usually stings a bit and, once in a while, gets really bloodshot.
Recovery from the vitrectomy took longer. I had to stay in a head-down position for four days. I have since learned that some people have to keep their heads down for weeks and I am so thankful that I only needed to stay in this position for a few days. It was just an annoyance. I was blind in my left eye for a time after the surgery, which was shocking even though I had been told to expect it.
Then a “bubble” (caused by the material inserted in my eye during surgery to replace the vitreous gel) appeared in my field of vision, just as the surgeon had explained. The vision gradually returned and the bubble got smaller and smaller until it disappeared. I was off work for a month and I needed that entire time for recovery. I was allowed to resume driving about two weeks after I returned to work.
I sometimes feel like I am in a no-man's-land. I am not legally blind, but I really have difficulty seeing. I have blind spots in my central vision that make it difficult to read and work on the computer for any length of time and make it almost impossible to identify people's faces.
I am trying to adapt to my low vision as gracefully as possible. My eye doctor referred me to a local agency for the blind and visually impaired, but it is frustrating to try to gain access to services. I don't seem to fit in anywhere because I am not yet legally blind, yet I need some help to keep performing my job. I recently had to leave a part-time job as a Youth Minister, because I just could not keep up with two jobs while trying to stay healthy and balanced.
 Belinda and her husband John at a Marriage Encounter weekend |
I started my blog, called Losing Vision, Gaining Insight [1], because I was trying to think of a positive, proactive response to my deteriorating vision, and was looking around online for some ideas. My husband and I are long-time Marriage Encounter dialoguers, which means we write a short letter to each other every day about our thoughts and feelings.
A blog seemed like a way to write down and sort out my thoughts and feelings about losing my vision while letting my family and friends know what I was going through and, hopefully, educating and uplifting other people who might read it. I am finding that writing my blog is very therapeutic.
If it looks like my post is negative or is about a tough challenge, I ask myself to find the grace in the situation. This exercise has really helped me to have a more positive outlook overall. I have gotten really nice feedback about my writing, which is a lovely unexpected blessing.
I enjoy posts that have changed my outlook. For example, one morning after my surgery I was feeling bored and sorry for myself. I decided to poke fun at myself and came up with one of my favorite posts: 5 Ways I Can Tell I’ve Been Home Too Long [9]. By the time I had finished writing the post, I was in a much better mood. Here is an excerpt:
2. I have set up a little system whereby each task I do earns me points. Once I earn enough points, I can “spend” my points on a snack or a nap. It’s sort of my own, private game show. Writing this paragraph, for example, has earned me a cup of juice.
I also enjoy posts where I look at a video or scripture passage from the perspective of low vision. I love music and find that I can express myself easily when talking about how a song makes me feel and think. In my post Laughing With [10], for example, I explored Regina Spektor’s song of the same name:
My life before was a journey full of peaks and valleys. Now, it seems to me like I am on a steady journey, traveling deep into the heart of some mystery full of grace. The loss of vision is a hard thing to deal with. I’m not going to say it is easy. But there is an easiness about the slow decline, an easiness that I never experienced in the ups and downs of my life before this. I am grateful for the relatively slow speed of my vision loss for this reason. I have time to search out the grace. I have time to uncover the beauty. I have time to laugh with God.
I've started learned about "blind photography" and am loving learning how to use my digital camera to bring things that I can't see with my eyes into focus when uploaded onto my computer. Photography has really given me a new way to see and I am very grateful.
I use a point-and-shoot digital camera with everything set on automatic. My “technique” is to look for a patch of color (which is why I take so many pictures of flowers) or to look for contrast of light and shadows or to look for something that stands out as different against a background (such as a sculpture against the sky).
I take lots and lots of pictures, because I know that many will be unusable: out of focus, uninteresting, or poor lighting, for example. I upload the photos to my computer and do a lot of editing. I think of it as finding the beauty within the photo I have taken.
Here’s an excerpt from Now I See [11], one of my favorite blog posts about blind photography:
As I am practicing at “blind” photography, I am beginning to be more aware of different aspects of the visual world. Yesterday morning, my sense of smell and the heaviness of the air told me that there would still be dew present. I couldn’t see it with my eyes. I haven’t seen dewdrops in the “real” visual world in a long time. When I enlarged the photos, there they were. I felt a small thrill to see the drops, like tiny jewels on the leaves and petals. Seeing them, I felt so grateful for this gift, and for all the gifts that photography offers to me as a visually impaired person.
Another favorite photograph is from my blog post entitled Swans! [12]:
I don’t know why the reflection of the swans in the water is so clear, but I am really happy with how it turned out. For me, this photo has a feeling of family, of maternal love and protection. It captures the feeling of joy I have when I see a beautiful, graceful swan.
I have always loved to read and I am making a transition to audio books. Our public library has a wonderful selection and the books can be downloaded from home, so it is really easy to obtain great books. I am learning to use my ears to read instead of my eyes and that is taking some work.
All my life, if I had a book in my hands, everyone in my family knew that it would be difficult to get my attention. I became very focused on the written word, to the exclusion of everything else. I would enter the world created by the book wholeheartedly.
I find that this does not happen when listening to an audio book, however. Even when listening with headphones, I am easily distracted by movement or outside noises around me. I am not able to enter the book as intensely.
I also have three little dogs - Bichon Frises - that my husband and I love to take for walks in the parks in Rochester. The most important thing for me when I am walking is to pay attention. Over the past several years, I have practiced mindfulness and this really helps me.
When I am walking, especially in unfamiliar territory, I can’t daydream or think about “to-do” lists. I have to be completely “present” to being on my walk. I walk slowly. I take someone’s arm if the sidewalk or ground is uneven. I have learned that I have to know my limitations if I want to be safe. All of this has actually made walks very enjoyable, because I am paying attention to what is right in front of me instead of worrying about chores waiting for me at home.
There are two things that I like about the VisionAWARE web site. First, the web site offers access to so much good, reliable information in a way that is not patronizing or simplistic. Second, it is easy to navigate the site. It is a pleasure to look around on the web site.
Where you can find Belinda online: [13]
Here are some additional links to help readers locate more information about blindness, vision loss, low vision, and recreational activities:
Links:
[1] http://losingvisiongaininginsight.wordpress.com/
[2] http://www.sjfc.edu/
[3] http://www.stbernards.edu/
[4] http://www.naz.edu/
[5] http://dro.hs.columbia.edu/vmts.htm
[6] http://www.lowvision.org/Pathological Myopia.htm
[7] http://www.visionaware.org/what_treatments_are_available_for_wet_amd
[8] http://www.visionaware.org/aging-eye-low-vision
[9] http://losingvisiongaininginsight.wordpress.com/2010/05/13/5-ways-i-can-tell-ive-been-home-too-long
[10] http://losingvisiongaininginsight.wordpress.com/2010/05/01/laughing-with
[11] http://losingvisiongaininginsight.wordpress.com/2010/05/04/now-i-see
[12] http://losingvisiongaininginsight.wordpress.com/2010/06/19/swans/
[13] http://losingvisiongaininginsight.wordpress.com
[14] http://twitter.com/bbrasley
[15] http://www.facebook.com/belinda.brasley
[16] http://www.visionaware.org/blind_bloggers_blogs_by_people_who_are_blind_or_have_low_vision
[17] http://www.visionaware.org/find_vision_rehabilitation_vision_services_in_your_state
[18] http://www.visionaware.org/Employment
[19] http://www.visionaware.org/vision_rehabilitation_services
[20] http://www.visionaware.org/independent_living
[21] http://www.visionaware.org/about_indoor_outdoor_travel
[22] http://www.visionaware.org/sports_groups