VisionAware

Fifteen years ago, Tom McCarville was a photographer and lighting engineer, running his own company with his partner Martha Parisian. With combined experience in movie making, television, and commercial photography, Tom and Martha had a successful media business and were climbing their joint ladder of success.

Life changed when Tom decided to visit his eye doctor and purchase a more modern pair of eyeglass frames. He was given the news that he had permanently lost 20% of his peripheral vision through glaucoma. “The disease is out of control,” he was told by his ophthalmologist.

For the next few years, Tom struggled first through prescription drugs that caused a range of unsettling reactions and then through surgery. Today, Tom no longer works in media but has since received graduate education to become a vision rehabilitation therapist, working with adults who are blind or have low vision.

In 1998, Martha and Tom co-founded the not-for-profit organization E.A.R.S. for EYES — an Enrichment Audio Resource Service — that provides free of charge, instructional audiotapes that teach adaptive daily living skills to older adults who are blind or have low vision. Tom’s other passion in life is tomatoes — but not just any tomatoes!

Time for New Spectacles — and Unexpected Eye Test Results

I was living in Michigan; I had a photography business with my partner Martha. My specialty was lighting. We used to photograph commercial products that were very difficult to shoot, such as glassware and other things that were highly reflective.

One day I was in a mall and decided to do something about my un-hip eyeglass frames. I had to have an exam and they did the “poof” test — the one in which they check the pressure of your eyes by using jets of air directed at your eye. [Editor’s note: This is also called non-contact (or air-puff) tonometry.] Well, they poofed, and poofed, and poofed. Then they asked me if I’d been tested for glaucoma recently, which I hadn’t, and they recommended I go to see an ophthalmologist — which I did the next day!

I discovered that my eye pressure was in the 40s, which is more than double what it’s supposed to be. [Editor’s note: Most ophthalmologists state that normal intraocular, or inside the eye, pressure ranges between 11 and 21.] They did an automated test on me — it’s called perimetry, or visual field testing — where you have to look straight ahead and then push a button, or tell the tester, whenever you see a light flash.

As a result of that test, I was told I’d lost about 20% of the peripheral, or side, vision in my left eye, totally unbeknownst to me! I mean, I’d only gone to the doctor to get some new eyeglass frames. I had no idea that anything was wrong with my eyes.

We weren’t aware of glaucoma being in the family and I was never conscious of a problem. Of course, as a photographer, I was using my central vision every day, but like so many people who have been diagnosed with glaucoma, I had no concept of it.

Unfortunately, it was discovered at a late stage and, as we know, there is no cure for glaucoma. Once you’ve lost sight it can’t be restored. It’s sometimes called “the sneak thief of sight” because it comes slowly and unexpectedly and shows few, if any, symptoms.

As you can imagine, I was taken aback by this news. I decided to find out as much as I could about glaucoma. I had some connections at the University of Michigan Kellogg Eye Center, where they have a glaucoma clinic and where there are some pretty high-end folks.

I figured if I was going to get help, I might as well go as high as I could go in terms of skill. They discovered I had a pretty gnarly case of glaucoma and it was very difficult to control. The drops they tried to use either didn’t work, or, if they did work, caused terrible reactions. The worst one was that everything I drank that was carbonated tasted like stainless steel. The drugs had to go — I like my beer too much!

But the medical staff persevered. They worked intensively with me, but couldn’t get my eye pressures down to an acceptable level. There was an opportunity for some surgery — a process called a trabulectomy — which is most commonly used to prevent or curtail damage to the optic nerve by reducing intraocular pressure. So I had it. They made a small incision in the eye and left a flap of tissue to cover the incision, which allows for the slow release of fluid from the inside of the eye.

Unfortunately, as the pressure in my eye decreased, there was a wrinkle that developed on my macula — the part of the retina that provides clear central vision — which caused another problem. So although my eye pressure decreased and was more regulated, I was left with more vision problems.

And at that point, I was still in the photography studio and couldn’t do lighting as I’d done it before. I was 34 years old when I was first diagnosed and it was not a good time for me, as you can imagine.

Family and Friends React

I found that my family and friends wanted to ignore the whole thing. Losing my vision was not something they wanted to deal with; it was as if I had cancer, or some other serious health problem. There’s a sense of denial that developed, like the “elephant in the room” type of situation. They didn’t ask questions, but then again, I didn’t (and still don’t) act as though I had a vision problem.

And then there were the occasional incidents in which I did things that people misinterpreted. I walked the dog and ran into a parking meter; people thought I was drunk. I was in rooms and couldn’t locate someone or something because the lighting was poor; people looked at me as though I was dimwitted. But then again, I didn’t have a sign on me that said, “I can’t see,” and to look at me, you wouldn’t I had a vision problem.

I remember one time I was walking with Martha on Fifth Avenue in Manhattan at Christmas. While I was chatting away, everyone around me stopped and I didn’t, and I walked straight into the path of a moving cab! When you have a field loss, or reduced side vision, you think you can see more than you actually can see, and that can be dangerous when you’re not paying attention to what is going on around you.

My own perception is that I’m seeing everything just fine. I know that’s not completely accurate, however, because I know have to physically turn my head or body and look over to the left in order to get what would be considered a normal, or full, field of view.

Also, in my left eye, there are areas where I have holes in my vision. I have lots of floaters, and I know I’m developing cataracts, but if I take the time I can see and do most everything. It’s just that it takes me longer than most people.

A Change in Tom’s Chosen Profession

Two years or so after my diagnosis, my vision was really becoming a problem. I could still deal well with daily living issues, but professionally I was having difficulty. Although Martha was very much aware that we couldn’t continue working, she was extremely supportive; in fact, she would sometimes sense I was having problems even before I did!

Martha and I decided to hang in together with the business for as long as we could, but as a long-term career, I knew it was probably not the best choice. I realized I had to do something else.

I made the decision to go to Western Michigan University to become a history professor, but I found it difficult to keep up with the amount of reading that was required. I just couldn’t read as quickly as I used to. One of my professors said, “You know, they have a department here called Blindness and Low Vision Studies. I don’t have a clue what they do, but why don’t you go and talk with them.” So I did. I met Paul and Sue Ponchillia who were heading up the department — remarkable people — and they showed me around the place.

Within a week, I shifted from the history department to the blind rehabilitation department! I was fascinated, just fascinated. People who couldn’t see were walking around with canes and guide dogs, learning incredible daily living skills stuff, and teaching other people with vision loss how to do it.

I have to admit that some of my motivation was based on my own need to learn how to continue doing daily living tasks independently. I saw it as a twofold mission: I could teach myself to do things really well, plus I’d also be able to teach other people with vision loss to be more independent.

Before I spoke with the Ponchillias I’d never heard of a Vision Rehabilitation Therapist before, but I took to it immediately — boom! I knew there was something out there for “blind people,” but it didn’t relate to me in any way.

Having come into the profession by the back door — as a businessperson and as someone who was experiencing his own vision problems — I found that my attitude was very different from my colleagues. Because of my own vision loss, I took a very practical approach to learning. I had been having difficulties with daily living issues, but I began to realize there were compensatory ways of getting around most problems.

I was positive and optimistic about people’s ability to do things. I didn’t have a namby-pamby attitude; instead, it was more an “Okay, let’s do it!” approach. I struggled with learning braille, but I loved learning about daily living skills.

I especially enjoyed cooking while wearing blindfolds or goggles that simulated different eye conditions, such as glaucoma and macular degeneration. I figured that if I ever went stone-cold blind I’d be able to cook a meal and I’d be able to teach others who were in a similar situation.

It was a master’s degree program and I zipped through it in about a year and three months. I did my internship at a State Commission for the Blind, where I worked with older people with vision loss and taught them in their own homes. I also learned about some of the problems associated with the profession and its ability to effectively deliver services to people.

The Start of a New Profession as a Vision Rehabilitation Therapist

I felt I’d been prepared to teach, but once I started working, I realized that I wasn’t able to do what I’d been trained to do. I had 120 people on my caseload, and there could be four weeks that elapsed between each person’s lessons.

I also kept seeing the same scenarios over and over again: People got sick, so classes were cancelled; the time I was able to see them wasn’t always convenient for them; or they would forget what they had learned because our classes were so far apart. It was frustrating for me and for my clients.

I knew the need for services was incredible. I also realized there were many, many more people who did not contact the State Commission for the Blind and therefore weren’t receiving any help or rehabilitation services. These, of course, are not problems unique to any one state commission for the blind; these are problems, I believe, that are endemic to almost every state in the country.

Martha and I were still doing photography in the evenings and I shared my frustrations with her. We’d both started out in radio and TV, and I remember pulling the switch for the premiere show of Sesame Street in Michigan. We were there at the start of educational television. Martha had also worked in network television and I’d worked in cinema. All our work experience and degrees were in the media. So I said to Martha, “If I could just leave an audio tape with my clients so they could practice what we’ve done during our lessons together, maybe that would help.”

So we just did it! I made the tapes on the spot, while I was with the client, and that was how we began giving instruction in this format. Since both Martha and I had been behind and in front of the camera during the early days of educational television, we learned firsthand how to augment what the teacher was doing in the classroom.

The Road to Founding E.A.R.S. for EYES

Our idea was to create a new level of rehabilitation training for the mass media. Some of my former colleagues thought our ideas were farfetched, but I reminded them that teachers were also unreceptive when television first came into the classroom. I never envisioned the tapes as replacing rehabilitation instruction; instead, I saw them as extending and augmenting an overloaded rehabilitation network.

Two years after I graduated, we began to think about starting a non-profit organization, although we knew very little about the not-for-profit world. We talked with a friend who had a very successful non-profit organization in Michigan, where we were still based, and he gave us some excellent advice about finances.

We decided that Michigan was not a good place for fundraising so we decided to go to New York where all the money is! We completed the paperwork to apply for a not-for-profit organization, got our determination letter from the IRS, and left for New York City with our savings in our hands. We chose E.A.R.S. for EYES — an Enrichment Audio Resource Service — as the name of our new organization and were determined to make our ideas work!

It was a couple of years before we had any money coming in. One of our first donors gave us $10,000 for a research project to determine if our audio tapes actually worked. We developed tapes on adapted daily living skills, found visually impaired people in New York willing to work with us, and monitored their progress in using the tapes. After some minor revisions of the original script, we had the data to show that the tapes worked!

E.A.R.S. for EYES is a self-initiated program; in other words, the adult with vision loss has to make the first move by requesting our audio tapes. They’re easy to listen to, they’re set up like radio shows, they have music, they’re not academic, and they have humor — which makes the information easier to digest and removes the sense of “Oh, poor me.” It’s more like, “Let’s just do it!” We visited every senior center in the state of New York, handed out our brochures, and began to grow.

The majority of our clients are from the five boroughs of New York, but we’re gradually becoming a national organization. And, yes, rehabilitation teachers/vision rehabilitation therapists are now using the tapes, although the majority of people see us an alternate to the more established home or center-based rehabilitation services.

The explosive growth of the older adult population means that the current system of rehabilitation centers and government services simply cannot meet the rehabilitation needs of hundreds of thousands of visually impaired seniors who could benefit from them.

My Life Has Changed But I Love What I Do

What I try to convey to people is that I could be sitting around, continuing to lose vision, functioning less and less, enjoying life less and less, and reaching a point where I’d be watching soaps all day long — but I don’t.

Instead, I try to develop strategies that will enable me to do those things I want and love to do. From personal experience, I understand the anger and depression that accompany vision loss, but I also know that eventually you need to carry on — and that requires a determined choice.

When I realized that my vision problems were going to take my profession away, yes, I was angry — and I still am. But things have worked out really, really well. When I finally grasped that I was losing my vision, I had a terrible week in which I couldn’t think of a single thing I enjoyed doing that didn’t have a visual component to it. Everything I loved contained some element of vision.

But eventually you reach a balance. You learn to analyze your limitations, work on your challenges, and keep moving forward. At present, the pressure in my eyes has stabilized but the glaucoma is still continuing to progress — not as rapidly as it would if I didn’t have the treatment, but I can tell, in six-month chunks, that my vision is not as good as it was.

We remodeled Martha’s place recently and I’ve always been able to do electrical work and use saws; for the first time, however, I couldn’t see the difference between the colors of the electrical wires, which is frustrating and dangerous! And in all honesty, I still have moments of real anger. Although I feel I’m pretty well adjusted, it can still creep up on me from time to time.

I haven’t lost all of my sight, however. In one eye I’ve got pretty good central vision and that allows me to do most of what I want to do. I’m not as expedient or as graceful as I used to be, but I can manage to do most things. I still have some problems, though; for example, show me a coffee table and I’m sure to trip over it!

I think what losing my vision has done — and I think its happened with other people who have faced adversity — is that you plod along on your path and for one reason or another a tree falls in front of you or you trip over something, which makes you step back and assess your journey and your options. But losing my vision was a major event in my life. No question about it!

When I’m not working, I love to cook, especially Italian-style cooking. That’s one reason why E.A.R.S. for EYES has three cooking tapes! I used to be an avid moviegoer but there are so few movies now that I’m interested in.

I don’t read as much I used to, because I have to bring regular print almost up to my nose before I can read it. Big print is definitely my print! I came into the computer age late, but I use computers a lot and I can enlarge print up to a very convenient size. I think closed circuit televisions (CCTVs) and electronic video magnifiers are miraculous because of their ability to increase print size with no distortion.

A Passion for Heirloom Tomatoes

But my real passion is growing tomatoes — Heirloom tomatoes! I grew up in Michigan next door to a farmer, so I always had fresh tomatoes, lettuce, and asparagus when it was in season.

I grew up loving tomatoes, but began to notice they were losing their taste, especially the supermarket versions. I began to look into growing my own.

I went back to Michigan to visit the farmer we’d lived next to for all those years. He had died, but his wife told me I should look at Heirloom tomatoes. Heirloom tomatoes come from seeds that have been saved for generations. I grow the famous Brandywine, Pennsylvania tomatoes. The seeds originally came from the Amish country, and were given to a seed saver in Ohio.

I plant them in February. You have to “mother” them and check every week to make sure they’re tied properly or they’ll collapse. But once they start growing, they don’t stop. They produce right up until the frost, and weigh about a pound apiece. They’re the most tremendous-tasting tomatoes I’ve ever had in my life.

I have nine plants and they give me far more than I can eat, so I give a lot away to friends. They’re truly delicious, and it’s a great way to spend time when I’m not working! As long as I can tell a tomato from a weed — and my reduced vision is no problem — I’m happy!