Beams and Blindness

It took me awhile to get used to get over my pre-conceived ideas about blindness, and to begin to associate it with myself. I freely used words like "tolerance" and "understanding" and "adaptability" with nonnative speakers, language, culture, and cuisine. But when it came to accepting my own vision limitations, I was having none of it. This is the start of my journey in changing my attitude about my very own Retinitis Pigmentosa.

~ ~ ~ ~

"Why do you look at the speck that is in your brother's eye, but do not notice the log that is in your own eye?" Matt 7:3

“I had a lot to learn about judging others and accepting myself.

“Perhaps the best solution is to simply tell people that you are blind.”

“I’m not blind. I have a vision problem” I replied immediately.

Have you ever been around someone you don’t know well but who rubs you wrong, or downright irritates you? For me, that someone was Bob. I tried to be polite but from the start everything about him bothered me. First, he had the audacity to show up without telling me in advance that he was blind! So that was a shock. Fuming, I guided Bob through my parent’s house until we arrived at my apartment. There he sat on my sofa, determined to suggest that I was blind and that I should inform people of it! I glared at him—not that he would notice.

Bob was the Mobility Instructor assigned to my case by the Bureau of Blindness and Visual Services (BBVS) I had recently contacted.

“Blindness is a continuum,” he said. Not every blind person has lost all his vision. Some people still have some vision but are legally blind. That means they have to be at 20 feet to see what others can see at 200 feet. Or perhaps they have less than 10% of vision remaining. Sometimes blind people can only see light, but not shapes. What can you see?”

“I don't know. My problem (notice that I did not say ‘my blindness’?) is more of what I don’t see. I don’t see edges, or corners or even the dog all the time!” I joked. The truth was I ran into tables and open cupboards, missed steps. Poor Buddy learned to get out of the way or that I would fall over him.

“Are you legally blind?”

I recall being told something like that more than twenty years earlier but I stubbornly refused to admit it. “I’m not sure.”

“From what you tell me I think you can benefit from using a cane. Have you ever thought of that?”

“You mean a blind man’s cane? No, no! I don’t think I really need that! I’m just clumsy,” I muttered.

Bob was not to be deterred. “Would you be willing to try it out for a session? Perhaps around your neighborhood?”

I nervously covered my eyes, not even realizing the irony of that action.

“How long is a session?”

“Ohhh, an hour or so I believe would be enough.”

“Ack!” I muttered even more quietly under my breath. “Sure, why not?” is what I said aloud to him.

Bob then proceeded to take out a variety of canes for me to try out. We walked around the house and even went to the basement where we found my mother washing clothes. Bob jovially introduced himself. I held onto my cane. Embarrassing to have that stick in my hand! I don’t know why. My mom didn't even appear to notice.

As far as I was concerned Bob could leave and good riddance to him!

As soon as he left, I picked up my cell phone and punched in numbers. “Jim! He didn’t even tell me that he was blind before he came. Can you believe I cleaned up my entire apartment?!”

“Was this your annual spring cleaning?” As usual, my best friend who lived in California took a comical tack.

"Jim, can you please stay with me here!"

"Who is ‘he’ anyway and was he 100% blind?”

“Hmph! I’m talking about Bob, my new mobility instructor. Remember I told you he was coming over tonight to meet me? He never even let on beforehand that he was blind! And yes, he is 100% blind!"

"And do you always tell people you have a vision problem?" he asked pointedly.

"Why is it that blind people project their blindness onto others?” I huffed, ignoring him.

“As if you are an expert on blind people now. Isn’t he the first blind person that you ever met?” James laughed. “You are in denial, big time!”

“Oh, shut up!”

It was easy to fool myself before I called the BBVS. People who lose their vision gradually can get by for a long time without coming unglued. We just keep adapting. Suddenly a big chunk of vision disappears. This dislodges the fictitious comfort we’ve built up around ourselves. That’s what happened to me. Bob's visit bugged me so I refused to call him.

But Bob did not give up. He called me. “Amy, this is Bob, your mobility instructor. It’s been awhile since we talked...”

“Mmm. Sorry, uh—so busy with my job lately.”

“I know how that is. But your cane has come in now. Shall we take that trip in your neighborhood soon and you can try it out?”

“Ahhhh—-” I couldn’t think fast enough, “Well—” Why not?

We set up the time and date for one week later in October for us to traverse my neighborhood.

The big day arrived.

“Oh, you’re early!”

“Take your time. I’ll have a smoke.” Bob planted himself outside his driver’s window and extracted a pipe. He then filled it with an aromatic tobacco and puffed on it as he talked to his driver and waited for me to gather my wits about me.

“Okay, I’m ready.” I wasn’t but the sooner we got started, the sooner we could finish.

“Let me introduce you to your new cane,” Bob joked. He then reminded me how I should hold it and instructed me to lead the way, “just get a feel for it now.”

We took to the sidewalk with me in the lead. The sun caressed our shoulders as we explored the area. My cane seemed to me just like a pool cue and I regretted not having life-sized pockets low on the ground in which to shoot a series of colored or striped balls. The thought made me smile.

“Try walking with your eyes closed,” Bob called.

Just then I jabbed myself hard in the stomach with the cane, and yelped. “Ack!”

The life-sized billiards game turned into a dagger or fencing sport. “Ahhh! Where’s my shield?” I bemoaned the fact I was not a knight living back in Shakespearean times, and thus not properly armored.

“Speaking of yielding, let me show you how to cross the street.”

I smiled at the misunderstanding but took my cue to pay attention.

“When you hold your cane vertically, it indicates to drivers that you are stopped and do not intend to cross the street. That’s important. You then listen for sounds of traffic, and yield the right-of-way to them if you hear vehicles. If you hear nothing, then you proceed to cross.”

“Oookaay.” I could handle that, especially since I could still see with my eyes at the moment. “This cane stuff isn't so bad!”

I soon changed my tune. When I saw Rhet McCohn, my neighbor and one of the shakers in our town, I desperately longed to tap my cane out of sight. “Oh no! I look like I’m cross-country skiing, except there isn’t any snow!” As Mr. McCohn watched us file past his house, I then closed my eyes for real. No time like the present to try my skills! He must be wondering what we’re doing, why I’m using this cane.

I imagined myself stopping, holding my cane vertically as if I were going to cross the street. Except I would turn to face him. What would I do? Twirl my cane like a drum majorette’s baton? Use it as a teacher’s pointer and gesture dramatically? “As you can clearly see, I am now learning how to be blind!” Or would I use my cane as a musician’s baton and conduct a silent symphony and introduce Bob as the Master conductor? I did none of these things, of course. I kept on going and tried not to blush. Let Mr. McCohn think what he would!

I don’t know how Bob knew Mr. McCohn was there but he greeted him with, “Nice day to be out and about, wouldn’t you say?”

I noticed Mr. McCohn didn’t have anything at all to say.

We arrived back at the house, and I guided Bob up the stairs to my sofa again for our debriefing.

“You moved at a good clip,” he approved, “especially towards the end.” His voice took on a teasing tone. It’s as if he knew just how embarrassed I felt in front of the town mayor who lived kitty-corner to my home. “Did you close your eyes at all?”

“I did,” and wondered if Mr. McCohn did too.

Maybe Bob wasn’t quite as bad as I originally figured. After all, a blind teacher with a sense of humor might really have something of value to teach me. I held my cane vertically and thought, “Okay, I’m stopped. But ready to yield.”

Words Define and Guide Us Revision

Words Define and Guide Us

"I, personally, prefer to use the word "sight" rather than "vision" because one can possess much vision with no sight; while the converse results in sighted people who are by no stretch of the imagination, visionaries. Blindness, to whatever degree, is simply the absence of sight; vision is quite another matter."
- Chet Smalley, Blindness and mobility specialist, Erie, PA.

A few days ago, I was asked to participate in a survey by a doctoral student at Louisiana Tech University because my mobility specialist thought that I could contribute positively to this research. I was reminded of how far I had come from that covert, secretly-out- of-my-element, ha-ha, sorry-so-clumsy- today young woman. Few knew then that I had struggled for many years with Retitinitis Pigmentosa, a progressive eye disease robbing me of my sight. Today - one year later to the day from my first training experience - I use a cane, smile a lot and can speak openly about my RP. As a high school teacher, I set out not only to teach English but also to model self-confidence and independence.

Chet, the mobility specialist assigned to teach me the basics of cane use to give me more confidence and have less accidents getting around, alerts me to language in my speech that he believes holds me back from becoming the best I can be. He said, "You, for example, Amy, still think of your blindness as a condition rather than one of your many characteristics.” I had told Chet about my desire to befriend a young woman who had RP. I felt she was avoiding meeting me, and concluded that it was probably a little frightening for her to think of meeting another person with vision problems.

Chet's response was quick, "Listen to your language: you are using: the words "vision" and "problems” in the same breath. That’s deficit language. Blind can also be construed as a deficit word until one becomes acquainted with blind people who are productive, happy and well-adjusted to their blindness. Blind people by the thousands are demonstrating that the world need not be interacted with just by way of sight."

That’s true. I’m discovering that I can get around better when I apply my non-visual techniques to walking. I bump into fewer objects, trip over stairs less and what’s even better, people don’t get angry when I do make mistakes because they see my cane. But I tend to use my cane at work, at night and in supermarkets and theaters when I have more difficulty. Does that then make it a condition in my eyes?

My instructor went on to say that when we look at blindness as a characteristic instead of a disability, blindness can become just one component of an otherwise fulfilled person. I realized that although I had made progress on this continuum of accepting myself as blind, I still had a journey before I would be comfortable thinking of blindness as simply another characteristic of myself. I wonder how one gets to that point?

Chet believes it is through immersion cane training and exposure to positive role models that enables one to truly adjust. There are a number of places across the US where one can live and learn the skills necessary for coping with blindness. They are “immersed” in cane training, which means candidates receive in-depth ongoing and regular daily training with their cane that makes using a cane second nature. In a day that consists of learning meal preparation, alternative means of accomplishing tasks and computer instruction, cane training is a priority.

He points out that adjustment to blindness means living the life to which one is hoping to adjust, and living should not be accepting less of what one desires. If using my cane becomes so second nature that I do see my blindness simply as another characteristic and not the defining characteristic of myself, will I have arrived at the understanding he envisions for me?

It is this question I grapple with now. If I intend to positively impact the lives of a different set of students, for example, ones who are also blind, then I must be certain that I have the best understanding of who I am with my unique capabilities and characteristics. This identity Chet describes has to come from within myself. It's not something I can put on or take off at random. The question returns: how do I reduce a condition to simply one of my many characteristics?

As always, God provides me with the answer. In the book of Colossians, Paul exhorts his Christian brethren, "We have not stopped praying for you and asking God to fill you with the knowledge of His will through all spiritual wisdom and understanding.” (Col 1:9) This tells me that we have brothers and sisters who pray for us. God tells us to ask for wisdom, and assures that He will provide. Whether God provides wisdom through training or through our identity in Christ, we trust and move forward in that understanding.

If I choose to walk by my defining characteristic, my love for Him, then He will make everything clear in His perfect timing. As I grow and adjust to this continuum of blindness God has allowed me to go through, He will place markers along the way to guide me. I believe Chet's attention to my deficit language is such a marker.

Paul goes on to say, "And we pray this [wisdom and understanding] in order that you might live a life worthy of the Lord and may please him in every way, bearing fruit in every good work, growing in the knowledge of God..."(Col 1:10).

When I first became a teacher, I doubted my skills and abilities yet God put me in situations where my talents bloomed. In fact, He not only shouldered my fears and developed my talents, He brought me to many peaks in my professional life.. As a result, I have become an even better teacher than I dreamed I could be. I have influenced many students both here and abroad. This has placed me in a beautiful position to share God’s love in more than thirty-three countries! I believe the fruits of my labor will extend to blind students as well. I know that every experience we go through prepares us to serve in bigger capacities and it is with that knowledge that I set myself to have my blindness become only a characteristic and not a condition.

Thank you, Lord that even as my sight diminishes, You continue to magnify my vision.

God's Winter-Warmth

Before I came back to the United States, I struggled with the thought of facing winter. I wondered how I could bear it after living in tropical and desert countries for so many years. I hated the cold and had lots of fears about going through a whole winter at home. However, God showed me that not only could I bear it, He could make it something beautiful for me to experience. God used Buddy to teach me how to see the wonders of winter. Through prayer, God opened up my heart. I learned that He cared even about my fear of cold weather! My "heart journey" is reflected in the following poem.

Change of Perspective

Anchored for years in sun-splashed countries

my return to North America

meant acculturation to cold once more;

‘winter’ grew into a mountain-sized dilemma

overpowering my mustard seed-sized faith.

I crept about shunning the cold.

“Oh God, take away this fate!”

“No. Instead let me take you through it.”

He handed me three crucial tools:

a pair of boots, my dog and a new perspective

with all five senses heightened

to experience the winter I feared.

He planned to woo me

with a fresh, new love for winter

that I began to treasure.

God used Buddy to show me snow wonders!

God walked alongside us ...

Up and down hills, through the woods,

over fields chuckling at a bright-eyed dog

who delighted in his new world;

My prayer became, "God show me more!"

The overflowing fruits of God’s winter-warmth

soon burgeoned inside my heart.

-- 2/27/07 (rev 2010)

Surprise Birthday Mayhem!

Let me tell you: I love birthdays! I think it’s because I don’t look at birthdays as turning a year older; I think of them as confirming our own unique personalities and worth. They are days when anything exciting can unfold, and I expect it to. My attitude towards birthdays carries over to my friends, and I always try to make them feel special..

So, when I got invited to my Facebook friend’s surprise 50^th birthday party, I couldn’t turn the invitation down, even though I hadn’t seen my friend in thirty years! I looked at it as an adventure—and that’s exactly what it turned out to be. I anticipated a challenge because this undertaking would first, take place at night, and second, in an unfamiliar venue. How would I handle it when my classmate saw I was now using a blind man's cane?

My best friend, Kathy, stamped her feet to get warm,“Got the card and crying towel?” The crying towel was a gag gift for Birthday Boy.

“Yep.”

"Got your cane?"

“Yep.”

“Ready to rip?”

“R.I.P? You mean I’m takin’ my life in my hands?” I quipped. Then a moment of suspicious--and somewhat nervous--laughter hit me, "Did you say 'trip?' "

“Come on, I'm doing you a favor by going with you, and I'm freezin' while you're making jokes."

Brrrr! It felt like the coldest day of winter. When we spoke, our breath came out in tiny puffs. The wind sliced through my fashionable blue jeans where my jacket stopped. I wasn't wearing my warm cap as "limp flat hair" was not simply not acceptable at such a gathering. My fingers became stiff in the short walk from the parking lot to the building.

We ducked into the restaurant. I stood still for a few moments to let my eyes adjust to the dimly-lit interior. Kathy waited patiently for me to give the go-ahead to move forward.

"How about that table over there?" I tried to follow her chin movement. Over there? To the right? To the left? Across the room? My eyes were still adjusting.

"Oh yeah...the table is right ahead of you. Can you see it?"

"Ummm. Now I can. Okay, let's go."

I swept my cane back and forth. That made me feel like a street cleaner, except instead of cleaning I was spreading snow in wobbly arcs across carpet those first few steps. We reached the table--to the right of the door and a little behind us--and shed our coats.Some other women joined us.

“Let’s get something to drink.” Kathy suggested.

We ordered our beverages and headed back to our table. Where was Birthday Boy? I set my Coke down. When I set it down, I knocked over Kathy's cup. Ah, I didn't see it there! I watched the contents cover the table in record speed. I could definitely see that! People dashed madly about to bring napkins and paper towels. I just stood there watching. "Sorry. Sorry." I apologized as the woman tried to staunch the mess before it dripped onto their clothes. I caught Kathy's eye. She looked amused. I grimaced. What a way to start!

At that moment, Birthday Boy arrived at our table. Oblivious, he gave each of us a big, warm pull-me-close hug, which stretched out into a second one...

“Guess what Amy did? She spilled my drink all over the table. I didn't even get my first sip!"

She was up to something, but what? I glared daggers at her, but this time the darkness was in her favor. Drats! What would Birthday Boy think? She was not cued into any of my "Watch-it-you're-on-dangerous-ground" signals.

Birthday Boy still wore dark glasses but they didn't look as heavy as I remembered. He had a little less hair on top... and a little bit more on his face (a salt and pepper mustache and beard). He seemed inclined to forgive any clumsy misdeed, “You did that?” He smiled benignly and I noticed a tooth missing on the top right-hand side of his mouth. "You're lookin' good, the both of yous," he gestured to Kathy as well.

“Ahhh…it's very dark in here,” I muttered to explain both the spill and his compliment, thinking how I would skewer my friend the moment he left.

"It's been a long time since I saw ya last." He looked relaxed as he tugged on the flap of his baseball cap.

"Yeah like thirty years," I reminded him. I hadn't seen him since high school.

"Want ya to meet my wife and doctor-I mean, daughter..." He called out to them, swaying a little, "C'mere..."

I smiled in Birthday Boy's direction where I expected them to show up. I held out my arm and thought they'd take it if they were there. No one did. So I quickly pulled it back.

"Oh daddy, whaddya want?" The blurry figure of an attractive blond, but slightly heavy-set young girl came into my view. He put his arm around her shoulder; his pride was unmistakable. "This is my daughter, Kelsie."

I nodded at her.

"Are ya havin' a good time?"

I wasn't sure if she meant Kathy and I or her dad, Birthday Boy.

He smiled at all of us,"What's more importan' than bein' with family and friends at my big 5-0?"

An older, heavier but less made-up version of the teen girl stepped into my view. Long blond hair and a friendly, wide smile caught my attention. She offered her hand, "So nice to meet you. I've seen your comments on Facebook. My daughter here actually sent out the invitations for the surprise party." She looked approvingly at Kelsie.

"So nice to meet you, Kathy." I didn't risk offering my hand. It was a casual outing, after all.

When they all left, I turned to my friend, "Okay, spill it!" I grinned at my pun, "Why did you tell him I spilled the drink?”

“I thought he might offer to buy me another one.” She made a face.

I rolled my eyes. What could I say? "It didn't work now, did it?"

"Nope," She laughed. "Be right back. I'm gonna get a Coke now. But don't go near it!" she joked.

"Don't worry. I don't think I could stand a repeat performance."

*****

The rest of the night passed by without incident-- if you don't include me knocking two pieces of cake out of Kathy's hand before leaving or drawing the attention of another former classmate with my cane. I'll just have to get used to these "happenstances." Is that the right word? It was noteworthy that I managed to go through the buffet line without dumping any chicken wings ... wasn't sure how I could carry a plateful of food and manage my cane at the same time! But slow and steady makes the grade...

Birthday Boy reveled in the attention of family, close friends and old acquaintances. He was kind, generous and very welcoming. I was so glad that I came to be part of this celebration! I think sometimes as in the case of old - let me change that to "former" classmates meeting up -- where there is no bond due to a lifetime of different experiences, the "lifetime ago" becomes that bond. It's kind of a neat feeling.