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THE MACULAR
DEGENERATION COMMUNITY

 

Elliot
photo

Name
Elliot Aronson

Born
1/9/32

Home
Santa Cruz, California

Diagnosis
Wet, occult, macular degeneration, with Pigment Epithelial Detachments

Eyes Affected
Both eyes.

Eye Color
Blue

Age at Diagnosis
68

Visual Acuity
20/400 in my left eye; 20/80 in my right eye.

Treatment
There is no treatment currently available for my specific condition. I have had three expert opinions on this. My current RS, an acknowledged expert in the field, assures me that it is best to take a wait and see approach (I wait, while he sees!).

Prognosis or Current State of Vision
It has not stabilized and my vision will probably continue to deteriorate unless the researchers come up with something soon--that is useful for my particular condition.

Family History
No one in my family has had serious visual problems. But my parents, grandparents, and older brother died fairly young--so AMD might have been latent--with no time to develop in them.

Impact on My Life
It has had a major impact on my life and work. I am a scholar. I have written 18 books and continue to write, teach and lecture. But reading has become extremely tedious. I need a great deal of magnification--and even then, the words are very blurry. I continue my scholarly activities but everything I do takes about three times as much time and effort as it used to--and the effort frequently exhausts me.

In spite of these difficulties, I steadfastly refuse to let the disease get me down. I am working hard to soldier through and continue to do the work that I love to do--and that I think is important for society.

Perhaps the greatest negative impact the disease has had on my life is that I can no longer see, with clarity, the faces of the people I love. To take one poignant example, when I play with my breathtakingly beautiful 4-year old granddaughter (the apple of my eye!), her face has begun to look as though I am viewing it in a fun-house mirror (some fun!). Over the past two years, I have learned that I can adjust to almost anything. But this aspect of the disease continues to break my heart on a daily basis.

Positive Effects
There have been many positive effects. I believe that I have become a more compassionate person. I reach out more to strangers with disabilities, asking if they would like help when they appear to be having difficulties.

I have learned a lot about myself. As my eyesight has continued to deteriorate, I have learned that I can adapt to almost anything. (As one of my children put it, " You are maintaining your "vision" even as you are losing your eyesight!").

I have learned that I can be both honest and cheerful around my family and friends. That is, I don't try to minimize the difficulty of what I am going through; I don't lie to them about the pain I am experiencing. At the same time, I don't complain about it--and I have even learned to joke about it--because I find that humor is a powerful and positive ally. It not only makes me feel better but it also helps my loved ones feel more comfortable and less sad when they are with me.

Adaptations
I have tried hard not to let the disease interfere TOO much with my life. I still travel through airports a lot in order to lecture around the world. I still can teach effectively--even though I can no longer read my lecture notes. For recreational reading, I rely on books on tape--which I enjoy enormously.

I can still drive a little (20 miles an hour in daylight, in the city--with my weaker eye closed). I anticipate that it will be very difficult when I am forced to give up driving entirely.

I am blessed with a wonderful support system. I continue to enjoy interacting with my friends, my loving wife, my four children and my nine grandchildren.

I have learned to magnify words on my computer and use magnification and good lighting to do my work. I have learned to approach strangers to ask for their help (for example, in reading signs and monitors at airports). I am looking into the fancier devices like Max and Jordy for possible use.

My spirits are very high. The RS who first diagnosed me knew his stuff but had the compassion of a toad. He simply said that I had AMD, that there was nothing they could do for me, and that I would most probably lose from 70-90% of my vision. For the first few weeks after the diagnosis I went into a deep depression--and into panic. I would wake up in the middle of the night in a cold sweat thinking, "if it's this bad now, what's it going to be like in two or three years?"

I taught myself to stop thinking about the future and to take it a day at a time. To learn to enjoy my limited vision to the fullest--and to come to the full realization that I am more than my eyes--that, in the worst case, I could still enjoy my life.

More About Me
I have a loving wife, four wonderful children and nine extraordinary grandchildren. The past two years (since my eyesight began to fail) have been at one and the same time, the most difficult and the most exciting time of my life. Difficult, for obvious reasons. Exciting, because this disease has taught me a lot about who I am and what I am capable of--as well as giving me more appreciation for how blessed I am. Dealing with this disease has been quite a journey thus farÉand will probably continue to be. It is a road full of potholes, but it IS a road! For more about my, see my web site at www.jigsaw.org