I’m three years into RP.  Night blindness and blind spots.  My stride is tentative.  Cars and pedestrians seem to jump out of nowhere.  I’d feel safer walking with arms outstretched – one to protect my head from scraping street signs, the other to sweep for parking meters and people.  I’m still years away from giving in to a white cane; I know I need help but don’t admit it.

People are starting to wonder what’s wrong with me.  I hid it pretty well during the interview, but back on the street it’s tougher.  On the way to Temple, I got confused at a subway turnstile.  I couldn’t see where to put my token. Commuters jammed up behind me.  A transit cop yelled at me from a booth, but I couldn’t follow her gestures.  Her shouts got drowned in crowd noise.  Finally, someone took my hand and guided it to the coin slot.

The interview ran long.   Night is drawing near.    Now I need to walk through this tunnel under Broad Street to get to my train.  Its full of bodies propped against the walls, legs sticking into the center.  I see them silhouetted against the light at the end of the tunnel, but once I’m upon them, they’ll disappear.  Don’t be afraid of what you can’t see?  What a joke.  These are drunks and crack heads.  If I bash somebody’s ankle with the toe of my wing tip, he’ll cut my throat for sure.

I am terrified.  How did I get here?  What mix of bad genes, bad luck and trouble?  What price pride and arrogance?  What do I do?  What on earth do I do?

Glasses got to be a bother.  Toward the end, I wore them all the time so I’d know where they were.  If I set them down, I’d never find them.  Messing with bifocals got too tricky. Tilt my head back to read close-up stuff and I’d almost fall over backward.

Going without glasses saved me some bucks.  That is, until my wife needed new ones for herself.  We almost had to take out a second mortgage to pay for them.  I pitched in for half of hers, just so we could keep the house.

I also save so much on car insurance that I pay half of the premium they charge my wife.  That way she lets me ride shotgun whenever I want.  Before I anted up, I sat in the back seat while she was up front with the dog.

I still make a fashion statement with eyewear. I’ve got the coolest sunglasses.  I bought them four years ago in a boutique on Clark Street.  My wife picked out the frames.  She says I look sharp.  I’m proud I haven’t lost them.  Knock on wood.

I’ve always had a problem seeing straight.  Back in high school, when glasses turned uncool, I jammed hard contact lenses the size of salad plates into my eyes.  When they got dirty, I washed them with saliva.  No wonder I can’t see so well anymore.  One night, I put my contacts in after slicing jalapeno peppers.  I don’t recommend that.  Unless, of course, you enjoy pain.

So, I guess it’s just as well I don’t need glasses anymore.  They turned into a hassle.  I’m happy just riding shotgun, looking cool in my sunglasses.

One student asked me, “Are there questions too sensitive to ask a blind person?”  This was a new one on me.  Most questions are more concrete: “How do you tell a single from a twenty?” and “Does your guide dog double as a guard dog?”

I said, “The more I can tell you about blindness, and the more you understand, then the better we relate to each other.  I don’t consider personal questions indiscreet.  Too few questions are asked and answered.  We all might be a bit overly sensitive about our privacy.  Of course, I’m assuming your curiosity and concern are rooted in good motives.  Some blind friends tell me they become guarded when asked for details on their vision loss.  They tell me they are afraid of being taken advantage of.  I don’t feel that way.  I don’t know why, but I don’t.”

Then I said, “Of course, sometimes I don’t feel like talking about blindness.  The whole thing gets tiresome.  I’m not always inclined to be the good-natured educator or the eager conversationalist.  At those times, if I decline to engage, I hope I will do so politely.  If I distrust your motives, I might tell you to mind your own business, but do so in a Disney way. So, I guess from your point of view, if I look serene, ask away; if I look uptight, just tell me you like my dog and leave it at that.”

I sputtered to a stop.  “Next question, please.”

Now, here’s the back story.  I earned this helpful point of view only after protracted periods of physical isolation and emotional withdrawal.  Whew!  I elevated denial, anger, depression and bargaining to an art form.  Still do, only less than before.  That’s normal in vision loss, but hardly helpful.

To help others, I first needed to help myself.  And you’d think that my social work education would have helped me breeze through those stages of grief. You’d be wrong and so was I.  The disease humbled me.

A few years back, I heard that the Guild for the Blind was starting a support group.  I said, “I don’t need a support group.”  Twenty-two years into vision loss and I was still thinking like an idiot.  I went on about my marginal way.  The next time the group was offered, I said, “Well, I might not need this for myself, but maybe I can help some newcomer.”  I gave a little and took a little.  Now, I hang on for dear life.

Coping with blindness is a collective, not a solitary, endeavor.  While I understand that all I am is of my own making, that doesn’t mean I have to shovel my way out all by myself.  I have learned that I can fight alone or recover together.  I accepted the paradox that to surrender is to join the winners.

I have been blessed with friends who have taught by their example that giving it away is the surest way to keep it.  In my volunteer work with the Guild for the Blind and Harold Washington College and my employment at Friedman Place, I try to give back what was freely offered to me.  That’s the best and the least I can do.

This year, I volunteered to hold the ladder while my brother strings the outside lights. Last year, nobody asked me to help and my brother fell off the ladder and hurt his back. This year my brother says he’s not getting up on any ladders, that he’s learned his lesson. I think he should have thought of that last year and asked me to hold his ladder. He would have saved himself a sore back. Plus, I would have felt helpful.

Nobody wants me to bring anything to the holiday party. They tell me to bring my appetite, that’s all. So I bring a nice bottle of Cabernet. It’s clean, unpretentious and needs no refrigeration. My family thinks I can’t cook and that’s based on solid evidence. But I can be helpful. I string more popcorn than I eat. Believe it or not, I’m good at wrapping gifts. Hell, I can be the best sober bartender your party could ever want. And, this year, I won’t even insist on a tip jar.

In return for my help, all I ask is a guide to cruise me through the buffet line. Buffets are the bane of the blind. Last year, my solo trip garnered nine deviled eggs alongside the decorative parsley. Just help me with food selection. I’ll do the rest. I will balance my flimsy plate on my knees while I keep the dog from stealing meatballs from that four year-old. Whose kid is that, anyway?

So, who needs a hand? I’ve got that “can do” attitude. Put me down as Santa’s helper. Especially you, bro. You stand six foot five and you need a ladder?

Silence is how many strangers greet me.  Perhaps they are struck dumb by my dazzling smile.  More likely, they remain silent  out of fear.  Or confusion.  Or ignorance.  “I am not contagious,” I want to tell them.  “And my dog doesn’t bite.”

I remained oblivious of how to help the blind until I became one of them.  I learned much by trial and error.  Then I read the book, Business and Social Etiquette with Disabled People.  I wish I had learned these techniques early in vision loss.  I would have followed their scripts,  expressed my needs more clearly, asked for help more readily, and been more adept at helping others.

Still, it’s never too early or too late to learn a new trick.  “May I help you?” is always welcome.  So is the greeting, “Hi Jeff, it’s Rita,”  That way, I can return Rita’s greeting using her name.  While I can match many voices to names, I have yet to develop a photographic memory, or whatever you call the auditory equivalent.

Beyond suggesting  ways that others can help me, I have learned ways to help others.  I have learned methods more effective  than shouting to get my point across to a person hard of hearing.  I have learned that, yes, most people in wheelchairs appreciate when you crouch and converse at their level.  Emily Post said that manners is not knowing which fork to use at a dinner party, it’s knowing how to help another person feel at ease.  This is good stuff for me to learn.  I hope that by taking a little time and making a little effort, I become  a little more at ease with myself and helpful to others.

Note: The book, Business and social Etiquette with Disabled People: How to Get Along with Persons Who Have Impairments of Mobility, Vision, Hearing or Speech  is written by Chalda Maloff and is available from the NLS, under catalog number DB 29501

I also rely on Randy, my Seeing Eye dog, to bridge my sensory gap.  He hears things four times more distant than me.  He has two hundred million smell sensors in his nose, compared to my five million.  This means that he smells better than me.  But when I must fish from his mouth the exquisitely rancid morsels he scarfs off the sidewalk, I conclude he has no taste

My remaining senses help me create a picture of people, places and things.  That picture may be inaccurate, but I make it pleasant.  For example, I imagine that every clear and melodic woman’s voice is wearing that little black dress, size six.  This image pleases me.  The news that two-thirds of Americans are obese or simply overweight does not deface that picture.  Just so you don’t think I’m only picking on women, I also see all men with the thirty-two inch waistline I sculpted until I turned fifty.

Most fashion trends are lost on me.  Namely, tattoos and piercings.  Way back when, only bikers got tattoos.  Their favorite said “Mother.”  Hey, dude, Can I get that in Braille?  Regarding piercings, I have never asked an acquaintance permission to feel his or her face.  And, thank God, no blind person has ever asked to feel mine.  Don’t get me wrong.  I like the feel of soft skin.  I’m just not eager to feel pieces of metal jutting out here and there.

Some may suggest I am denying reality; that I run from the truth.  I say don’t confuse me with the facts.  My vision of America may not be accurate, but it’s all mine.

Both Michaels seem fearless.  They tore around on bicycles as blind kids, full throttle, daring to crash.  Blindness was all they knew.  Me, I parked my ten-speed the moment my blind spots swallowed their first stop sign, at age 35, when my RP kicked in.  Vision was all I knew.   Maybe that made all the difference between us.  Maybe that made no difference at all.

Both Michaels seem, well, so OK with blindness.  They played the hand they were dealt.  Me, I looked for wild cards that would keep my hand a winner, keep me from feeling like it was the end of the world.

Both Michaels set goals, worked hard, and succeeded.  When I lost my eyesight, I felt my accomplishments were behind me.  Motivation became tinged with “What’s the use?” Both Michaels exude self-confidence.  Mine was replaced by self-consciousness.  I curled inward, frozen by fear.

I feel I’ve come a long way toward being comfortable in my own skin.  Still, after reading these books by and about these miraculous humans, I got kind of down on myself.  I felt inadequate next to these Golden Boys.  Then I remembered this is not about me.  I need not use comparison as my knee-jerk reaction.  I need not focus on differences rather than similarities. Do I truly believe I had to roll away bigger stones than they?  Or they
than I?  Every person, blind or sighted, has a meaningful story. Enough said.

Every reader of this blog has the opportunity to leave a comment or reply to an existing comment. This process takes four steps. First, compose your message. Second, type your email address. Third, type your name.  Fourth, activate the “Post Your Comment Button.”

Sighted readers and visually impaired readers using screen magnification software report little difficulty with this process.  They click each edit box in turn, enter the text, then click on the Post comment Button.

Screen reader users report the most difficulty.  The following steps have worked for me.  If there is a better way, please let me know and we’ll all benefit.  My scientific method may need improvement.  I use the following software: Windows 7, Word 2010 and JAWS 12.
Other operating systems and software applications may require tweaking these steps.  Here goes:

1. Press Enter on “Leave a Comment” or “Reply” after the blog you wish to comment on
2. Press Insert F5 to bring up a list of form fields
3. Down arrow to “Enter Your Comment Here” and press Enter
4. You will hear, “Type in Text”
5. Type your comment here or cut and paste your comment  that you composed in a Word document
6. Press Insert F5 and down arrow to “Email Address” and press Enter
7. Type your email address and press Insert F5
8. Down arrow to “Name” and press Enter
9. Type your name and press Insert F5
10. Down arrow to “Post Comment Button and press Enter

Still with me?  Now for the “Yes, but” department.  You only need to fill in the email and name edit boxes when you make your first comment.  Subsequent comments from the
same computer will already have your email and name filled in automatically.  If in doubt, press Insert 8 to read that edit box to see if it’s empty or if it contains your info.

So, there you have it. I hope this works and works well. Let’s give this remedy some practice. If we need further modifications, we will address them.  We will assemble our combined experiences and present them to the administrator of the blog site, which is the company called WordPress, which makes the rules for the mechanics of how comments and replies are created and posted.  Meanwhile, happy reading!

When I related Janet’s story to my wife, she said of our mutual friend, “I didn’t know Janet had such shame.”  And it struck me that my wife was on to something.  And that something is shame.

I often wonder what lies at the root of my feelings about my blindness.  I exhibit denial, fear and anger.  I minimize, camouflage and compensate.  I become self-conscious.  Now, I have the notion that behind all these reactions is shame.

To some degree, I have surrendered to and accepted blindness.  Yet all has not  become placid on my emotional pond.  Something remains  in the depths, causing little ripples on the surface. And I suspect that something is shame.

Shame is passed down from others.  We learn it early on.  I was fully immersed long before I started losing my eyesight at age 35.  Today, having put a name to it, I want to learn more. I’ve done a keyword search and downloaded a book from Learning
Ally.  It’s called Healing the Shame that Binds You.  Pretty provocative title.
Written by John Bradshaw.  I’ve heard he knows his stuff.

Maybe shame is unique to a select few.  Maybe some escape it.  But I think I’m on to something big.  I don’t know how things will turn out.  I’ll get back to you on this.