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Living and Working with Macular Degeneration
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Every day with Advanced Macular Degeneration is an adventure, beginning with the moment I open my eyes. Because my vision varies from day to day, the first thing I do is attempt to focus on the picture hanging near my bed. It depicts a woman sitting on a park bench, and if she’s a blur, I know I’m going to be facing some serious challenges in the coming hours.
After rolling out of bed I head to the bathroom. Lucky for me, I can’t really see my wrinkles or the whiskers I know must be sprouting on my chin, so that starts me out on a cheerful note! Now for the make-up! Back when I was younger I had lush eyebrows and didn’t need brow pencil. Now that I really need to apply it—well—try that without good vision. Some days I look like Groucho Marx. And who wants to leave the house without blush? If you don’t want to chance looking like a circus clown though, it might be better to just pinch your cheeks hard! For that reason, it’s best to stick to light-colored lipstick too. Also–make a mental note that hand lotion does not taste as minty-fresh as toothpaste and that disinfectant spray will absolutely not hold your hair in place as well as hairspray.
Now it’s off to the kitchen to rustle up some breakfast. If you’re in the mood for toast, be careful of the toaster controls or you might be spreading butter on a piece of charcoal or a hockey puck instead. And the first time you sprinkle a packet of salt instead of sugar on your cereal is sure to a memorable event. That’ll teach you not to steal those little packets of salt from the fast-food joints in the first place.
Lunch and dinner aren’t much easier. I’ve always loved to cook and wasn’t about to give up making my favorite recipes. That was until the day I made my famous chicken soup and it turned brown instead of the gorgeous golden-yellow I expected. Ugh! Could I have gotten a bad chicken? No—it turned out I had picked up beef bouillon by mistake!
And restaurants with their teeny-tiny menus aren’t much better. Of course there’s always a tuna or turkey sandwich, but that gets boring pretty quickly. I’ve learned the trick of asking the waiter what’s good and then taking his recommendation. You know– I’ve had some great things that way that I would have never thought to order on my own.
Once the food issues are out of the way, it’s time for work. Thank goodness for the Access-Link bus. I know it’s coming, because I hear it cheerfully rattling down the road. I transform myself on the bus. Even if I’ve set my hair with disinfectant spray or eaten salty cereal that morning, I put on my game face. I’ve been at the same job for almost three decades, and everyone knows me as a consummate professional. There are many people who don’t even realize I’m losing my vision.
Besides my reputation for professionalism, I’m also known as an exceptionally friendly person, with a chipper hello and a smile for everyone I pass. Little do they know I can’t see a single one of their faces!
How Macular Degeneration Changed My Life for the Better
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By Barbara Sarrett
I knew what it was when it finally happened. I had been waiting for it to keep its date with my eyes. One morning I woke up and there it was, not just a whisper of itself, but shouting at me: “I’m here! Are you ready for me?”
I had been waiting and I was ready. You see, both my parents have macular degeneration. I did everything possible to prevent it. I stopped smoking, I watched my weight, I took special vitamins, I started eating salads, and I learned to love Brussels sprouts. Even so, I lost all central vision in my left eye overnight.
There it was. I woke up one morning … no central vision! I accidentally put my hand over my right eye and the TV disappeared—gone, invisible, just like magic, except there was no magician in the room … just me. I could see up, down, left, and right, but not straight ahead. I wasn’t surprised. I expected, one day, in the distant future, it may happen. But at age 63, I was too young. My parents were in their late 70s when macular degeneration attacked their eyes. They were retired. I was an advertising executive. I needed my eyes to do my job successfully. I needed to see color clearly; I had to be able to tell the printer if the color was wrong.
Reality had hit and I needed to find another way. And I did. I still had my brain and my creative juices didn’t stop flowing just because I didn’t see as well. I was lucky. I was able to restructure my job and I continued working.
But, one day, a client handed me a business card and I couldn’t read the phone number. The previous day, I had been able to read regular-sized print. What could have happened? Instantly, I knew that macular degeneration had reared its ugly head once again: only this time, in my good eye. I immediately started all the therapies that were available at the time: laser, cold laser, injections. I canceled all my newspaper and magazine subscriptions, went to the library and took out large-print books, ordered large-print Reader’s Digest and the New York Times, and prepared for life with macular degeneration.
I started to think about organizing my closet with different-size circles and squares on my hangers so that I could identify my clothing by color. All blue tops would be with circles, red with squares, white with triangles, and so on. I was even thinking of producing these things so that others could have the benefit of my idea. After all, I didn’t want to leave the house in a striped top and plaid pants.
But, there was a bright side to all of this. The best part of starting to lose my sight was that I stopped working. I could retire.
My husband is self-employed, so there wasn’t a money issue. Finding something meaningful to do with my time was the issue … and I did. My next job would have a new title: volunteer.
I had always volunteered in my younger days. I had been a Girl Scout leader before I had children. I worked with the mentally challenged as a teenager. I was a youth group leader when my kids were teenagers. Along with my new title, macular degeneration made a new job description possible.
Now, I go into the high schools and teach a course on teen dating abuse that covers the warning signs and methods of prevention. I knew nothing about the subject; but, the National Council of Jewish Women in my area was looking for volunteers to take a course to learn the subject. I contacted them, told them I had macular degeneration and needed large-print materials. They needed volunteers so they provided me with the printed material in a large-print size. I also took a 3 day of class and memorized the script using large index cards that I made. Teen dating abuse affects 1 in 3 teens before they graduate from high school, and if they do not break the cycle, it can progress to domestic violence. Teaching this course is extremely rewarding.
I also was appointed to the public relations commission, became a member of the human relations commission of my town, and I am the elected committee woman for my district. My name appears on the ballot every 2 years.
Three years ago, along came new drugs, Avastin and Lucentis. I am one of the lucky ones. Avastin restored the sight in my right eye so that I am able to read regular print again. I reordered magazine subscriptions and enjoy the daily newspaper.
That’s not to say I no longer have vision problems. Things are often darker than they would be normally, so I carry a flashlight. Night walking is sometimes scary, so I hold my husband’s hand, and feel like a teenager again. There are many solutions when problems arise … just reach out and you will find them.
Today, I feel more complete as a human being than when I was working. Now I feel like I am really making a difference. And it’s all because macular degeneration tapped me on the shoulder and said, “Hello! I’m here!”
Things change because of macular degeneration, but you make the changes happen … you simply find new ways to do the same things. Who says you can’t teach an old dog new tricks? Those of us with macular degeneration are living proof that you can.
Macular degeneration allows you to make a difference in the lives of your friends and family. Never be afraid to ask for help, because asking a friend for help is another way to let them know how much you value and trust that person. Give someone the opportunity to feel needed and appreciated. I can’t drive at night anymore, but I never hesitate to ask my committee people to pick me up for a meeting.
This time of your life is not the end. It is a new beginning. Someone once said that loss of sight does not mean loss of vision and, my vision remains 20/20.
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