Macular Degeneration and Me

Laughing Matters

Have you ever been told your shirt is on inside out?  Have you ever found spots on the rug you didn’t know were there?  Has anyone ever pointed out the cobwebs on your ceiling?  My answer is unequivocally yes and then I laugh as hard as I can.  Because that’s the only way to handle this kind of thing.  Of course some days I don’t feel like laughing but mostly it’s OK not to take myself too seriously.

When you have low vision there are more important things to worry about.  Safety issues like walking down the stairs, crossing the street, chopping vegetables, and using the stove need our concentration so why not  chuckle when you can.

Wikipedia provides some information on the importance of laughter.  Children are known to laugh a great deal more than adults: an average baby laughs around 300 times a day compared to the average adult, who laughs about 20 times a day.  Of course this depends your personality but why should the babies have all the fun?

According to some studies, it seems that the onset of adulthood causes ‘a gradual change characterized by increased seriousness and a diminished engagement in laughter.’  If you can think of laughter as your personal expression of joy, of love, then it should be easy to surpass the 20 times a day Laughing Matters mark.

On days that it’s hard to find a reason to laugh, picture yourself as Lucille Ball in the world’s newest sitcom.  Remember she made the most mundane, the most embarrassing, into something to laugh about.  That’s priceless.

Just after I finished writing this I went out to play some miniature golf with my granddaughter – something we haven’t done in several years.  It was a bit tricky to see the topography but I didn’t fall in any ponds or trip over anything.  After golf (I lost again) we stopped for a soda.  The clerk handed me a soda cup for the self-serve machine.  I tried filling the cup with ice and soda but everything kept bouncing out of the cup.  Turns out there was a transparent lid inside the cup (which of course I couldn’t see).  Amanda and I started to laugh and couldn’t stop.  Perhaps you heard us.

Some Amazing Apps

I haven’t entered the Smartphone market because, quite frankly, I can’t see what’s on the screen.  Even thinking about trying to access the Internet to check email or Facebook, take a picture or figure out those QR codes seemed frustrating.  Couple that with glare, tiny keypads and all that scrolling, and my interest level was zero.

But now it’s been piqued by an article sent to me by my sister about iPhone Applications for people with no/low vision and I’m caught up in the wonder of it all.  Identifying colors, scanning forms and reading them aloud, navigation, magnification, high contrast displays, screen readers and so much more my head is spinning.

And according to this article in the Atlantic these apps are practical, intuitive, accessible and easy-to-use.  There are hundreds of these applications; some free, some minimally priced, others more expensive – all seem functional and I was surprised at the accessibility and training provided.

Although I’ve written today about the iPhone, it’s fair to say that the Android phone market also has assistive technology with many similar applications.

For people with vision impairment this is transformational!  Now only if there was an app to let me know my shirt is on inside out.

Special Accommodations

One of the blogs I look forward to reading is Brighter Nights.  I can always count on Jay for his unique perspective on vision loss and the words to convey the deep emotions we share.  Little did I realize how his latest post, The Mental Impact of Vision Loss, would impact me.

Many of you know that I am never reluctant to discuss my experiences with macular degeneration and the vision issues that go with it.  I believe the more educated people are, the better the understanding.  However as time goes by I realize how difficult it is for people to ‘see’ the way I do.  It’s not lack of trying, it’s just not possible to keep this in mind all day, every day.  That’s why those of us with vision loss, hang out together.

Most of my discussions with people are as a speaker or on a one-to-one basis.  Recently though, I had to make a decision asking for a special accommodation at a large venue – seating is amphitheater style and you enter at the top tier.  Since my depth perception is ‘kaput’ I was really concerned about the fear and disorientation that accompanies this issue.  So I called and asked for special seating.   Nice lady, no problem.

And so for the past two weeks, I’ve been out-of-sorts.  Hard to put my finger on what was happening and then I just happened to re-read Jay’s post and bingo! there it was.  I was having a Mental Impact Problem.  But what emotion was I feeling – it wasn’t anger or fear or denial (although I’ve had all these emotions over the years.)

After a lot of reflection I realized that I feel vulnerable for the very first time.  I will be out there for all to see as a ‘special’ person.  How will others react?  Will I be judged for sitting in special seating?  Quite possibly, since I don’t use a cane and have no other  outward sign of vision loss except for my wobbly gait and if you happen to notice my ‘glare’ glasses I wear indoors.

Is this silly on my part?  Maybe, but it’s a real emotion and I’m working my way through it.  I think I will handle it the same way as the one-on-one discussions.  Upfront, educate, educate, educate.

I know what Jay means when he talks about being valued.  In a *seeing* world, is my value diminished?  That would make me sad.

Brighter Nights is also a community for members helping members see through vision loss.  Read about their mission, sign up for the blog and learn about vision loss through our eyes.

Thanks Jay – for permission to use your article and for the support you give us all.

The Eye Chart Challenge

Many of you probably know the feeling – getting ready for your periodic ophthalmologist visit.  You think your vision is okay or at least not worse and then comes the eye chart test!  And your vision has deteriorated  - damn it.  How come I didn’t ‘see ‘ that coming?

At my doctor’s office the eye chart test is given by a skilled technical staff member but it is the first thing the ophthalmologist looks at; even before examining my eyes with the thousands of dollars worth of high-tech equipment.  And this test appears to be the basis for determining whether things are good, bad or worse.

This last appointment really bothered me so I’ve researched Eye Charts and have discovered there are several different kinds.  Wikipedia gives some good information and I’ve visited several websites as well.  Snellen, logMar, Landolt C and Lea are versions of Eye Charts – who knew there were so many types; some designed for one type of problem, some for another?

All eye charts are highly complex, made up of optotypes or test symbols, have a particular simple geometry, and some may be useful in measuring contrast, motion and color.  There are even eye charts for non-readers and children.  I’ve had mac degen for 19 years and this is the first time I’ve realized the impact of the Eye Chart.

A Snellen Chart  

Another good question is what other type of visual acuity tests are used?  There are many that do not require the use of high-tech machinery but do a good job indicating change in vision.  The Jaeger hand-held card is one that can help judge reading distance.

Does the optometrist use one type and the ophthalmologist another?  Perhaps the low vision specialist uses another.  Has anyone explained the limitations of an Eye Chart test?  Have you ever asked?

Has something like this happened to you?  Has your eye care team explained what and why they use a specific Eye Chart?  I’d like to hear what you have to say.

There Is Nothing Like A Dame

The news that Dame Judith Dench has macular degeneration hit the media like a storm – a typhoon if you will.  News outlets and media in general responded to this sad news with their usual fervor and stupidity, reporting she was going blind.  I saw the report on ABC World News and THEY reported accurately and showed evidence based information about mac degen.  Not so thousands of other sources.

Dame Judi jumped all over these inaccurate reports the very next day clarifying her low vision problems and making sure the public knows she is not going ‘blind.’

But, once again, the damage is done.  I have written extensively for the past year about the danger of these You Are Going Blind scare tactic headlines.  So now’s the time to dig in my heels and do something about it.  And I have the perfect champion in Dame Judi.

With Dame Judi’s openness and courage to talk about her macular degeneration we have the perfect opportunity to tell our own stories.  We’re in vogue folks so let’s step up and get the word out.   And let’s stop the YAGB scare tactics used in the media.

Will you join me in emailing, calling or writing to express your opinion (courteously of course) when you see these outrageous headlines or reports?  I’d love to hear from you and please let *M* know how much she has done for those of us with mac degen.