SupportSight

Life Is Too Precious To Waste

All of us with macular degeneration have a story. This is mine ... Mary Betty.

I screamed! My husband, Kenn, came running up the stairs shouting "What's the matter? Are you alright?"

"I can't see it," I cried.

"Can't see what?" he asked.

"I can't see the dip stick," I replied. I had been trying to decide between two shades of white paint for the woodwork in the guest room of our 200 year old farmhouse in the Lakes region of New Hampshire. "When I look at the dip stick with my right eye, I see it fine, but when I look at it with my left eye, it just disappears! I can't see it," I said.

The next afternoon found us in the ophthalmologist's office in Boston. After many tests and a thorough eye examination, he told us that I had macular degeneration in my left eye.

"Never heard of it" said my husband.

"What is it? How do we cure it?" I asked.

This was 1978. I was 57 years old. The doctor explained what it was and that I had apparently had it for some time without knowing it, as there was no longer any leakage and a scar had formed. There was nothing that could be done to fix that eye, but the other appeared healthy. He suggested I take vitamin E and selenium and gave me an Amsler grid to look at everyday. He told me to come back in three months, sooner if the lines on the grid looked wavy or cloudy. We were both shaken. Suppose it happened in the other eye? I wouldn't be able to read, drive or quilt. Quilting was my passion. I had made many quilts - some taking ribbons in local quilt shows.

Years flew by and my eyes stayed the same. In 1993, Kenn passed away after a long illness. I knew I didn't want to stay by myself out in the country. I decided to move to Pennsylvania, a few miles from Philadelphia. Three of my five sons live in northern New Jersey and this would be closer to them than New Hampshire.

The doctor gave me the name of a colleague of his in Philadelphia and sent him my records. I made an appointment to see him soon after I moved. There had been no change in my eyesight. I found having only one good eye didn't hamper my vision as far as I could tell. I could still drive, read and quilt.

In the summer of 1994, while on a trip to New Hampshire, I noticed things were looking cloudy and wavy. I went to Boston immediately. My good eye was starting to develop AMD. I received several laser treatments and my eye cleared up. I was able to drive myself back home to Pennsylvania. A couple of months later things began to get blurry again and I went to Philadelphia to see my doctor. I had some more laser treatments. Again things cleared up.

A few months later, as I was driving to the supermarket, all of a sudden I couldn't see the car ahead of me. I went to see the doctor the next day. He told me there was nothing more to be done. I was legally blind - goodbye. I was horrified! How could he just dismiss me without even saying he was sorry and with no explanation? I was angry and scared and decided to get a second opinion. A friend of mine suggested I see his ophthalmologist, Dr. Alexander Brucker at the Scheie Eye Institute at the University of Pennsylvania.

I called for an appointment and was told that Dr. Brucker was out of town, but Dr. Maguire would see me. What a difference that made! Dr. Maguire explained in great detail what had happened, answered all my questions in a kind thoughtful way and suggested I see Dr. Janet Steinberg, a low vision specialist who would help me make the most of the vision I had left. He assured me that my peripheral vision was good and my eyes were otherwise healthy. He told me to make my next appointment with Dr. Brucker. I had some hope. Dr. Steinberg did show me how to make the most of what vision I had although I couldn't see the big "E" on the chart.

My first appointment with Dr. Brucker was an "eye opener." I had found a doctor who would do more for me than just treat my eyes. He cares about his patients as people and helps them cope. I learned he had started a support group where he and others would come and speak about new developments in research and treatments for AMD and give us an opportunity to ask questions. This support group is now a network of support groups helping thousands of us to cope with this disease. His idea led to the MVRF SupportSight program across the country. Dr. "Sandy" Brucker is not only my ophthalmologist, he is my friend.

I decided I had two choices - give up and spend my time listening to talking books or teach myself new ways to do the things I enjoyed. I joined the support group founded by Dr. Brucker, where I would share ideas with others. I learned a lot. Finding new ways of doing things was a challenge. I volunteered to handle a "hotline" where others could call for advice and comfort.

In helping others with AMD, I learned many things and have been able to share this information with others. Life is too precious to waste. There are so many things to do and to learn and I am busy doing as many of them as I can. I found that with a little ingenuity, I could figure out how to do almost everything I did when I was sighted - go to the theater, travel, cook and entertain, play bridge, sew, knit, garden, put on my makeup, even though I can't see my face in the mirror. Of course, I can't drive or curl up with a good novel, but I do get places and I do receive information from a printed page although I have to do it differently. I'm now busy teaching others with AMD these skills.

We can still live full and happy lives even if we cannot see what we are doing.