January 18, 2020

The Monster Behind the Door

by

The Monster Behind the Door

Speech for PBA Awards Banquet
November 2, 2012

Dan Roberts
Founding Director
Macular Degeneration Support

Thank you for the privilege of speaking to you this evening, and the opportunity to get to know more of the great people of Prevent Blindness America. I’ve long admired the work of this organization and have referred many of our low vision community members–especially our younger people –to your services and resources over the years.

MD Support focuses principally on the senior population, so a team effort by our organizations makes perfect sense. And I hope we can find ways to do that even more extensively in the future.

When I was a child, there was a monster behind my closet door. Probably the same monster that lurked under your bed or somewhere else in your bedroom. I thought it might be a gorilla, but I never found out, because Mom and Dad slept in the next room, and the gorilla was afraid of big people.

Well, it never did get me, and, as I grew to young adulthood, I didn’t think much about the gorilla, because I was invulnerable, healthy and cocky enough to think I could handle anything and live forever.

But then, when I was 48 years old, a doctor told me I was going to go blind, and there was nothing he could do about it. That’s when my monster shoved open the door, and I recognized it for what it was: The Unknown. It was scarier than a gorilla or anything else I could have imagined. And I was totally defenseless. There was no big person sleeping in the next room who could make it go away.

So I ran. I ran to a place in my head where I could cower and cry and wait for the inevitable. I was a high school teacher in a room with no windows, so I retired early to enjoy lo˝oking at the daylight while I still could. I was a theater director and a church music minister who was going to have to try reading scripts and music in dim light. So I retired from those, too.

Then, with all that extra time on my hands, I had plenty of opportunity to think. And the more I thought, the angrier I became. Not at the doctor who told me there wasn’t anything anyone could do for me, but at myself for believing him. Sure, he stepped out of the way and let the gorilla knock me down, but that didn’t mean I couldn’t try to get back up. So my anger gave me strength. And, relying on the support of my wife, Chris (because I wasn’t as alone as I thought), I started figuring out how to make the Unknown known.

We bought a computer and found that thing called the Internet, where I found a few people who understood. And when I started finding answers (not necessarily solutions, but at least answers), and when I had connected to others who were traveling the road with me, I gained more strength and real≈ized that my big scary gorilla was really just a skinny little monkey.

As anyone with progressive vision loss will tell you, it is the fear of the unknown that is so debilitating. But, as Lillian Russell said, “What one does with that fear will make all the difference in the world.” And that makes it one of the biggest challenges we face in coping with progressive vision loss. But, even though we cannot yet beat the disease, with knowledge and human support as our weapons, we can beat the fear it brings.

And that’s where organizations like PBA and MD Support come in. We are the “sentinals at the bridge” between diagnosis and acceptance. We are making the unknown known for untold numbers of frightened patients and caregivers, and how lucky I would have been to have had someone like that.

How I wish someone would have been there when I left the clinic that first time, to tell me I wasn’t going blind. To tell me about things I could do, even if the ›worst happened, to maintain my independence and quality of life.

Someone who could have introduced me to low vision devices, computer technology, low vision rehabilitation, clinical trials, support groups, government benefits, transportation options, and personal counseling. But no one did. Maybe someone could have talked me out of retiring early by telling me that the progression of my particular disease is usually tracked in years, not days. But no one did.

The sad thing is that there WERE people who could help. Like my state agency. And other organizations and resources to help people like me. Why didn’t I know it? Because no one showed me where to look. In 1997, it wasn’t as easy as doing a Google search. We depended totally upon doctor referrals.

And today, even with the immediacy of the Internet, millions of elder seniors are still unconnected to the information and support that could literally save their lives. Recent polls show that about 40% of seniors are not familiar with Internet technology. And my experience has shown that more than half of that 40% cannot, or will not, take advantage of it. So they still need intermediaries to pull them into the circle, and that means continuing to reach out through clinics, schools, libraries, retirement centers, educational seminars, kiosks in shopping malls, television, radio, and hopefully through their younger family members who ARE familiar with the Internet.

If I had not heeded Chris’s insistence about searching out the resources, I might be telling a whole different story. But I listened to her. And because of that, I’m okay. But not JUST okay. I have discovered the joy of helping thousands of others through MD Support to understand that this is not a dead end. It’s just a detour. Our lives are still on track. We’re still parts of families and communities, and we still want to find ways to be meaningful. It’s just that we’re traveling a road we didn’t expect.

We set out in life with a visioná of a straight, smoothly-paved road along which we plan to travel unhindered into the future. But sometimes barriers block the way. We then have a choice to either stop, or turn back, or we can shoulder our bags and take the detours. And that can take us in some very interesting directions. And when we do get back to the main road, our bags will be a little heavier with the stuff we’ve picked up: souvenirs, hitchhikers, treasures, even some trash. It’s all in there, and good or bad, it’s a unique collection.

So far, my bag contains memories of people I never would have met if I had stopped on the main road.

And, oh, the people I’ve met.

Donna

The first person that welcomed me. She called herself the “Older’n’dirt Lady”, and in spite of her advanced MD and severe COPD, she never failed to make me laugh and to give totally of herself to everyone she met until she died of pneumonia in 2003ö.

Bob

A 92-year-old former World War One Royal Air Force pilot who lived in Australia with two cockatoos and hallucinated naked ladies on the wall of his bedroom every morning. That was a result of Charles Bonnet syndrome, which he insisted he didn’t want to be cured of.

Gideon

A man with advanced AMD in his mid 70’s, founded a successful low vision organization in Israel. We have since become close friends, in spite of having met in person only twice.

Joe

Who was diagnosed at age 70, and set about learning and teaching the art of digital photography to prove that nothing is impossible for people who are willing to learn and adapt.

Kimber

A teenager with Stargardt disease who won state equestrian championships and now teaches others how to show and ride horses.

Tabby

Who finally convinced her parents at age 12 that she was visually impaired. She has since used that same tenacity to earn a degree àin law from Harvard.

Tom

A retired priest who showed me early on that even someone with severe visual impairment could live independently in Manhattan and take Chris and me on a sightseeing tour.

These are only a handful of thousands of people in my bag, and, if I have learned only one thing from all of them, it’s that life challenges us over and again. And as we pass each test, overcome each obstacle, and confront each challenge, we become stronger. But only if we stick together. Because by sticking together, we can’t be worn down.

So, because I took this detour, my bag is full of people I never would have known, experiences I never would have had, places I never would have been, and challenges I never would have confronted. It also contains some moments I would just as soon forget.

Like when I was waiting my turn in the post office and saw Sheila, a fellow teacher, at the counter. ≈It had been over twenty-five years, at that time, since my retirement, but that was Sheila, all right. I couldn’t quite make out her face, but she was talking a blue streak, as usual, to the postal clerk about something or other; and I would know that voice anywhere.

By way of greeting her, I very loudly joked, “You know, if some people weren’t so gabby, the rest of us might get faster service here!” To which I expected good old Sheila to bite back with something like, “And if you weren’t so crotchety, you could have gotten here before me!” Then everyone in line would have had a healthy laugh at our antics, and this particular Monday morning would have become a little brighter.

But she wasn’t Sheila. I don’t know who she was. She just gathered her purse, whispered, “I’m sorry, sir,” and slipped quietly away.

All I know is that my mumbled apology meant zip to her and everyone else in line, and I’ll never be able to show my face in the post office —again.

Hopefully, our fear of the unknown, and our fear of making mistakes, will not stop us from taking the detours, because doing so takes courage. And like Dorothy’s Cowardly Lion, we can find that courage when faced with a choice between living well or barely living. And maybe we can even roar a little bit when we have the support of people who are willing to travel the road with us.

That original little group of people I found on the Internet in 1994 grew to several hundred, and, known as MDList, which I eventually took over as owner and moderator, we have been sharing our knowledge, our feelings, and our ideas for almost 15 years now. This has not only been a lifeline for all of us, but we have been able to provide the vision care field with some valuable input from the patients’ perspective.

We have participated in market surveys, focus groups, research studies, and opinion polls. We have participated in FDA committee hearings, congressional briefings, vision summits, and seminars. We have produced educational videos, and we have produced publications such as “A Self-Help Guide to Non-Visual Skills” and a book called “Through Our Eyes”, a collection of our essays and poetry about personal experiences with low vision. Because we are joined together, we have been able to gently roar, and, by doing so, we would like to think we have had a positive effect that will help pave the road for those who will follow us.

Fear of the unknown, and of being alone, are the worst of all fears, and, therefore, the biggest challenges in coping with progressive vision loss. But our questions do have answers, and together we can find them. Likewise, we can find solace in one another when the answers are not what we wan≠t to hear.

I would like to close by reading a short message from Anne, a long time member of our Internet community. She wrote:

“Imagine this. You are alone in a small boat on a lake. It’s a perfectly beautiful day, calm, the water is sparkling, and you are taking it all in. Out of nowhere, clouds roll in, heavy and dark. You head for shore, but your boat begins to sink. You slip into the deep, dark, murky water…You thrash about and cry for help.

You are about to give up when you find that you are being raised from the water and carried to shore. There, beneath you, is a net; but it is not made of rope. It is made of people, and you are being comforted and held firm.

Th!e net was invisible beneath the surface, but it was there to rise up when you needed it. All you had to do was call out. You were not alone.”

On behalf of millions of people like me, thank you for being our net, and thank you for this opportunity to join with you here this evening.

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