THRIVING IN A SIGHTED WORLD. BY FRAN CUTLER

Retirement 101 Conference, Toronto, Canada.
Saturday, October 22, 2005

It's wonderful to see your smiling, attentive faces. (Metaphorically speaking!) In my eyes you have blank faces which look like the characters in the old "Li'l Orphan Annie comic strip. Do you remember it?

I'm a practicing macular degenerate - that is, I'm practicing ways to make the most of what sight I have.

Macular degeneration is hard to simulate, but a quick exercise will give you some idea what' it's like from this side.

DEMO: Fist on face.

The frustrating part is that you can't cheat. That blank spot moves with you wherever you move your eyes.

I have a confession:
I do not have Age Related Macular Degeneration. 98% of mac degen. is age related, affecting people over 50.

I have a rare genetic form of early onset dry macular degeneration which causes scar tissue to build up over the macula. The effect is the same as in the advanced, age related form. In effect, my eyes turned 90 about when I turned 30!

I'm now 63, so I've had a long time to learn the skills to thrive, and not just survive with this condition (I hate the word "disease - I'm not sick!.)

Age Related Macular Degenerations (AMD)

In the more serious wet form, which affects ten per cent of those diagnosed, ophthalmologists may do a procedure which slows or stops the progression in some cases.

So far, there are no widely medically accepted procedures which will restore normal vision the way cataract surgery generally does.

CNIB does not take a position on new medical treatments. We're in the business of providing the skills and tools you need to stay independent and productive.

Useful websites and books which explain treatments and preventative measures are listed on the information handouts.

Here's a brief glimpse of how you can reduce your risk of AMD:

• Don't smoke! Smokers are two to three times as vulnerable. Women are at even greater risk than men.
• Eat healthily and moderately. Dark green and orange vegetables and fruits are good for your retina.
• Remember when mum told you carrots were good for your eyes, and World War Two pilots ate them to sharpen their vision? Carrots probably didn't help those pilots, or you, to see any better, but they are one of the veggies that contribute to healthy retinas.
• Coldwater fish, like salmon and tuna, are also good eye food.
• Avoid highly processed and packaged foods. Most of them contain the bad kinds of oils. Sorry, no cookies at lunch.
• Excess weight and high blood pressure are risk factors. Enough said.
• Wear sunglasses and a wide brimmed hat to protect your eyes from blue and ultra violet light.
• Have eye exams at least every two years. This is especially important if you are high risk. If you have a family history of mac degen, have light coloured eyes, or are farsighted, you are at increased risk.
• Early detection is important. Powerful doses of therapeutic vitamins and minerals have been shown to slow progression in about 25% of moderate cases. They should only be taken if recommended by an eye care professional.

If none of these preventive measures work, seek help sooner rather than later.

Vision loss isn't life threatening - just quality-of-life threatening. Without the services and understanding the CNIB offers, feelings of isolation, loss of self-esteem and depression are all too common. It's natural to worry about what you might NOT be able to do:

• Drive
• Read the newspaper
• See street signs
• Do your shopping
• Set your stove dials
• See your grandchildren's faces
• Watch TV or movies
• Work with tools
• Play golf or tennis.

Scary, isn't it?

With time and determination you can learn new ways to do many of those things, and others you want to do.

But when you are first told the bad news, it can be devastating.

When I was first diagnosed, and told I might not have reading or driving vision in 10 years, I did just what you'd expect - I had a good cry.

I went through all the predictable reactions:
Shock. Denial. Anger. Grief. Bewilderment.

But I had a job to do.
I had to prepare my weekly radio program on international affairs. So I had to block out my emotions and get on with it.

What I wish I could have found at that stage

I yearned for three things:

• Reliable information in print - even a book on my condition, and how to cope.
• Someone to talk to who'd been through what I was going through - a "kindred soul".
• And an all purpose tool which would give me back what I'd lost.

I waited 30 years for a good book. Now there are at least 3 good ones. The best is by Dr. Lylas Mogk, an ophthalmologist in Detroit whose father had mac degen. It's available at CNIB and through Amazon.com.

I had to wait 5 years before I found someone with the rare genetic condition I have - it turned out to be my sister.

Juvenile macular degeneration is caused by a mutated recessive gene, which we both inherited.

We've shared highs and lows - little things like the joys of finding a new, more compact and powerful telescope and the frustrations of plugging in electrical cords … and family members who write down messages in pencil rather than black felt marker!

In the 1970's, as my sight went slowly downhill, I searched for better magnifiers and large print typewriters. The CNIB didn't have low vision services until the mid-eighties. And hey, I wasn't blind!

I was lucky, though. My husband and sons have been very supportive.

My employer, the CBC, was very supportive, long before the days of Employment Equity and job accommodation.
Their attitude was "find what you need to do your job, and we'll cover the cost."

So I never feared I'd lose my job.

But there was a lot to learn. I figured out after a while that oh so polite Canadians were reluctant to ask how the problem affected what I could do.

I realized I needed to take the initiative and show them just what I can do with my low vision aids. This is an important point for those of you who may be looking at second careers or volunteer work.

People have a tendency to assume "can't do" if you don't show them otherwise.

Alas, there is no all purpose low vision device that takes the place of normal eyes.

I don't leave home without at least six gadgets.

DEMO: glasses, monocular, magnifiers, Hat, hiking pole.

Some of these devices come from CNIB, others, I've found elsewhere. Learning how to use powerful magnifying aids takes practice and persistence.

CNIB vision rehabilitation staff are outstanding at helping you figure out the tools that will work best for you.

The CNIB can also put you in touch with a kindred soul; the official term is "peer support counselors.

Under the heading "If I had only known what a difference this could make…", I'd put mastering computers earlier, and taking up vigorous physical activity.

Here's why these are so important for people with vision loss:

When you can't see fine detail, you can't read handwriting - even your own.

Email helps you keep in touch with friends and family, particularly the younger generation.

The Internet gives you access to the printed word, and the printed world.

I have a large print program which provides high contrast print in whatever size I want.
It also reads what's on the screen in a choice of several clear, natural voices. Here in Ontario, a good chunk of the cost is covered by the government's Assistive Devices Program.
It's hard work to learn computer skills and adaptive technology at the same time, but it's worth the effort.

I'm too old", I hear you muttering. Let me tell you about Dorothea. She adores international yacht racing, and wanted to learn to use a computer, so she could follow it closely.

At 85, with severe macular degeneration, she practiced diligently and became quite skilful. She then taught all her friends, sighted and vision impaired, in her senior citizens' residence.

She came back for some advanced training - at 90!

Exercise builds the stamina you need for the physical strain of reading and dealing with unfamiliar situations in a world that doesn't understand your problem.

I took up running in my late forties, mainly out of fear of osteoporosis. My mother's and grandmother's quality of later life was severely diminished by that condition, so I knew I was at risk.

Running has led to some funny moments. I often can't see direction signs out on a 5k course, and have to ask a course marshal. They point, of course, and I can't tell which way. "Right or left" I pant, and again, they point!, and say "that way".

Sometimes I can't tell exactly where the finish line is. Fortunately, I'm so slow, one of my fast friends in both senses of the word, is there to shout, "You're over, Fran.

You don't have to run races. Brisk walking is just as effective, as long as you do it several times a week.

Two years ago, I added strength training classes to my stay-fit-and-thrive routine. The grandchildren were getting heavier, and I wanted to avoid shoulder, back and knee strain.

The biggest challenge wasn't the weird looking machines in the gym - I soon memorized the settings. It was the progress sheet, I was expected to fill out. It was printed in thin, pale grey type on green paper, with shaded boxes. I asked the instructor if she could come up with a form with larger, bold, black print on plain white paper with no grey backgrounds.

She came into the next class with lovely clear, easy to read forms she'd designed on her own computer.

When the rest of the group saw them, they all wanted one, too. That's what universal design is all about.

Incidentally, two of the other regulars in the class are an 83 year old with early Alzheimer's, as she keeps telling us, and her 87 year old husband, who is a stroke survivor.

Do you remember the "Participaction" campaign about twenty-five years ago? That mythical 60 year old Swede who could out run the average 21 year old Canadian?

The Australian Department of Health came up with an even better line which fits perfectly with the Aussie attitude to life:

Exercise - you don't have ta take it seriously - just regularly.

Whatever your ability or disability, you have a right to a fulfilling retirement. You will have to get over any feelings about not wanting to put anyone to any trouble. I've found most people are delighted to help. You just have to explain what you need, and why this will make a difference for you.

I'm tossing you sage advice, and yet I still have to psych myself up every time I board a bus and say "I have limited eyesight. Can you please tell me your route number?"

(If I ask, "Is this an 86?", the driver will often respond with a nod or shake of the head. I can see the head moving, but I can't tell which way.)

Now, there are some advantages to poor eyesight. When you're approached by someone who obviously knows you, and you haven't a clue who it is, you can say, "I can't see your lovely features, you'll have to tell me who it is.

You can't see wrinkles - your friends' or your own - in the mirror. Once when I screened a recording of an interview I'd given, I noticed how wrinkled my neck is now. I asked my fashion conscious sister what to do about it.

She had a one word suggestion: SCARVES!

Learning to laugh at your awkward moments helps keep life in perspective. In the CBC Employment Equity Office, we had an all day disability sensitivity session for the Communications Department.

At one point I picked up a piece of paper and read it in my usual manner 5 centimetres from my nose. A young woman in the front row asked, "Why are you smelling the paper?!

It is embarrassing enough to approach a smartly dressed but taciturn young fellow in the men's wear department - only to realize you are talking to a mannequin.

It's even more embarrassing to look for the price tag on the sleeve of a mannequin - only to have the sleeve pull away on you!

You are no doubt conscious, that vision loss or some other limitation of later life could affect you or someone you care about.

If this happens, give yourself permission to be angry and sad and scared … for a while.
Then pull yourself together and reach out.
There are plenty of hands and hearts eager to reach back. It won't be long before YOU are one of the great people reaching back.

Thank you for listening.