Editor’s note: Join us for a screening and panel discussion of the documentary Going Blind: Coming Out of the Dark About Vision Loss (2010). In this two-part event you can register to receive a link to stream the film at your convenience from 9:00 am ET on May 4th through 9:00 pm ET on May 6th. Then, on May 6th at 2:00 pm ET join our interactive panel discussion where you’ll meet Joe and others from the film to talk about living with vision loss and the types of low-vision solutions you can use to thrive and succeed with low vision.
by Joe Lovett
A lot has happened with my vision since Going Blind was released in 2010. Some good things and other not so good things, so I’d like to take you along as I recall some of my vision journey that has brought me to the present.
Dealing with Corneal Edema
In my personal story about my journey with glaucoma, I discussed an experimental treatment that I had abroad and which is now in clinical trials here in the United States. As a result, my vision improved significantly enough for my life to continue normally for a few years. My first serious complication occurred about seven years ago when I developed corneal edema (swelling of the cornea) in my left eye. I went from 20/20 corrected vison to seeing around 20/100. My doctors discussed corneal transplants to correct my vision. It sounded dicey to me. I heard about a corrective contact lens developed in Israel for corneal edema and after discussing this option with my doctors we gave it a try. The lens smoothed out the ripples in my cornea and brought my vision back to 20/40, not bad.
Antibiotic Injections in the Eye
After wearing the lenses for a few months with reasonable success, I started seeing floaters in my left eye. We were coming home from a weekend family celebration on Cape Cod and heading toward the airport. I thought I might be having a detached retina. I called my retinologist (a retinal specialist), who said to come straight to the Manhattan Eye and Ear. After examining me, my doctor determined that it was not a retinal detachment. It turned out I had a massive infection, and I was started antibiotic injections. They were very painful.
The injections lasted for around 10 days and the pain was horrible. Nothing they gave me relieved the pain. After about two weeks, the eye started to heal. During this time my retina detached.
Retinal Detachment–Weighing the Pros and Cons
No decision regarding eye surgery is ever easy. I’ve always felt that you have to weigh the pros and cons and then make an informed decision. If it turns out poorly, you know you did the best you could.
At that point I had had enough with pain. I couldn’t bear the thought of more surgery that was likely to need revisions and might be prone to infection. My vision in that eye was very bad and I often wondered if I might do better without it. I decided not to have surgery to reattach the retina. I had just turned 70 and couldn’t bear the thought of spending a year or so going through painful operations that might not benefit me all that much.
My husband, Jim, is an anesthesiologist and like many doctors he believes in doing whatever you can, no matter what. He was very unhappy with my decision, but he understood it was my choice.
The decision to leave the eye alone did not cure the pain problem. My eye continued to be incredibly painful though it did improve from sheer agony to just horribly painful.
Another Option for Dealing with Pain
A month later we went to our nephew’s wedding in California and, when his in-laws saw the pain I was in, they offered me vaporized CBD from medical marijuana. It made a huge difference. Apparently, it can be particularly helpful with nerve pain. When I got back to New York, I got licensed to take medical marijuana. I started taking the CBD in pill form and in three days the pain was gone.
When I told my retinologist, he said “That’s very interesting.” “Interesting,” I said. “It’s more than interesting. I’ve been in severe pain all summer and nothing has relieved it until this.”
Consequences of Losing My Left Eye
The loss of vision in my left eye was a game changer. It seemed like I had no depth perception. I immediately started using a white cane for mobility, which was a tremendous help. My German Shepherd Lulu seemed to catch on to the problem instinctively, and although she isn’t a trained guide dog, she was great helping me on the sidewalks and through the aisles in stores. I no longer felt safe on my bike. I hated to give up riding my bike, but I knew I needed to travel safely.
I lost the vision in that eye during the summer. At Christmas we went to a small beach hotel we were familiar with in the Caribbean where the terrain was flat and I could easily walk between our room, the pool and the dining room without my cane. When we returned to New York I found that much of my depth perception had come back, or maybe I had adjusted. Either way, I felt I no longer needed the cane, but still found a strong flashlight very useful at night. By the way, during the six months that I used a white cane, only one person ever asked me on the street if I needed help. This makes me think that most people aren’t paying attention to me or my cane, they are probably looking at their cell phones! My experience left me in awe of totally blind people who travel independently.
I did try riding my bike again and did pretty well, but it took so much concentration that the anxiety it caused was not worth the joy of being on the bike. So, I gave up my favorite form of exercise and transportation. That’s been hard, but I’m adjusting to it.
Getting a Scleral Shield
My left eye started to shrink and discolor so my doctor suggested I get a Scleral shield. The shield is a partial prosthetic eye that sits like a large shell on top of your eye. It’s painted to look like your natural eye and because it sits on your eye, it moves with your eye. At first, I resisted getting it, because I thought it would be just to make other people comfortable. Then I realized that it could make me feel more comfortable as well. I got my scleral shield at Mager and Gougleman in Manhattan. Emery Bendek, the oculist/prosthetist, had lost an eye when he was a child. After an unfulfilling career in advertising, he decided to help people as he had been helped. We filmed him as he crafted, refined, painted, and re-refined the shield. The first time I wore it, the shield looked so real that I was disappointed that I couldn’t see with it.
The best thing that happened to me was in desperation. For years I have had a cataract. Because of my type of glaucoma and exfoliation syndrome, my doctors felt surgery to remove it was too risky. So, I was advised to tough it out with the worsening vision for as long as I could, and only have it when I couldn’t stand it anymore.
I was referred to a respected ophthalmologist at NYU, who examined me and felt that my eye was healthy and that the surgery would be rather uncomplicated. I liked him, appreciated his reputation, and understood his thinking. I decided to do have the procedure the next week.
Surgery went smoothly and the next day I was walking down the street, reading license plates on cars, and seeing more clearly than I had in years! It was a relief that a great deal of my vision loss had been from the cataract, but I also knew that glaucoma caused some of the vision loss as well.
Retinal Bleed as a Result of Surgery
I had one more problem a few weeks later, when undergoing a procedure to revise my trabeculectomy, the surgical drain created to relieve intraocular pressure. I had a retinal bleed. The bleed caused me to temporarily lose all of my sight in that eye. I knew the blindness would only last until the blood was reabsorbed, but nevertheless it was scary. When Jim and I left the doctor’s office we made a very awkward pair bumping into each other as we tried to make our way along the corridors, down the elevator, through the lobby and out onto the street. I have since learned that there is a technique called human guide that would have been very helpful for Jim and I to learn.
Even though I was assured this was temporary and the bleed would be totally reabsorbed with a few weeks, I couldn’t help fearing that this would continue to be my new reality. After years of advocating for people who are visually impaired, I embarked on a new education experience: living as a blind person, even if only in the short term. There is no question in my mind that, had I not met Jessica Jones, Ray Kornman, and Steve Baskis, three people in Going Blind who are totally blind, I would have been totally panic-stricken. But because they had shown me in such detail how they had adjusted both emotionally and with new skill sets, I knew that I, too, was capable of handling it.
Belief in My Abilities
One more thing before I sign off. About six years ago, we were hired to do a very large corporate project for one of the largest Fortune 400 companies by a woman whom I had met over the years. At our first team meeting I was informed that my friend would be late. When she came in about a half hour later she walked over to me, took my hand, and said, “Hi Joe, it’s Abigail (not her real name).” I thought it was odd that she would introduce herself to me as if we didn’t know each other, then I realized that she wasn’t sure how far my vision loss had progressed, and she probably thought that by now I was quite blind. I was incredibly touched at her thoughtfulness.
I wrote her and said that I realized that she had thought I must have lost most of my vision by now and that I was incredibly moved and impressed that she had hired me anyway for this huge job. I added, “I must reassure you that with or without my sight, my team and I will do a great job for you.” She wrote back, “I know. That’s why I hired you.”
A Word of Encouragement to People New to Vision Loss
Prior to producing Going Blind, I knew nothing about blindness and vision rehabilitation. Even after making the film, I don’t know everything, but I do know that information about vision loss is woefully inadequate. I’m still very concerned that too few people are being referred for vision rehabilitation services. If you are faced with a similar situation and lose some or all vision, know that there are services available to help you cope and develop new skills to live independently. You can find them through the VisionAware Directory of Services. Also, VisionAware has a Getting Started Guide in English and Spanish that gives excellent tips to help you “get started” on your journey. And you can always call the APH ConnectCenter at 1-800-232-5463 and talk to live person!
Video Clip: Going Blind Update: Where is Joe Now?
Clips from Going Blind
Another Person’s Take on Getting Started with Vision Loss
Low Vision – American Academy of Ophthalmology (aao.org) –“There is something you can do.”
For Doctors: Talking to Your Patients About Visual Impairment – VisionAware