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.”

Developing a Runner's Endurance

"God, I wanna run! I wanna move fast and feel free. I wanna be how I used to be!”

Twenty-two years after first being diagnosed with Retinitis Pigmentosa, a progressive eye disorder usually resulting in blindness, I finally had to turn to a cane to get around. I’d gotten more used to it throughout the year but with my active lifestyle, sometimes I longed to toss the cane down, and just make a dash for it! I thought of my danger areas: supermarkets, banks, restaurants, libraries, hardware stores and other unfamiliar buildings. I really needed my cane there.

“God, just give me something, some tiny bit of freedom!”

I knew this kind of thinking wasn’t wise, that I should seek to be content in all circumstances, but of late my heart was rebelling. The initial thrill of mastering my cane had worn off and I felt the burden of everyday use wear me down.

So this spring I deliberately left my cane at home and began to run in my neighborhood. My mother grew concerned as I made my way over local streets. “Be careful of the cars,” she’d call. Or, “Watch out for the sewers and curbs!” I acquiesced but went on my way, determined to run the course just like any other runner might. I could see well enough to make my way over these obstacles.

“You’re gonna fool around and get hurt. I’d feel better if you run on the school track," my mom warned. But I ran on the streets anyway. I'd slip on some loose gravel, and trip on unseen sewers, or over the curbs. I got bruised and skinned up my legs and shins. After about my fourth or fifth near miss one day, I listened to my mom.

Running at the track was boring and tedious. It took four times around just to make a mile! Sometimes I forgot how many laps I'd run, which in turn, frustrated me. Some days I had really bad vision days. I crossed over some of the lanes, and once, collided with the fence surrounding the track. Other times I just missed barreling into other runners on the track. On these days I could easily feel defeated. But I wouldn’t allow myself to be derailed.

“God, it’s difficult. But I wanna do it! I wanna run like I used to. Lord, give me this time to build up my skills again.”

I needed a well-developed plan. Goal 1: run every sunny or warm day. (I was not so dedicated to force myself to run on rainy days, however). Goal 2: Be accountable. I began to post my runs on Facebook. Goal 3: Don’t worry about speed. Just focus on how many laps to complete each time. Aim for 3-4 times a week. Goal 4: Work on endurance. Goal 5: Increase speed and length. Goal 6: Successfully finish the season.

As God shortened the distances that I walked and lengthened the marks that delineated my runs, I began to change my attitude about the track. I accepted it as a safe boundary in which to accomplish my goals. What was my next step? Try to go further? Faster?

“Do you know how long it takes you to run a mile?” my friend asked.

“Well, I usually walk and run.”

“So you don’t really know, do you?” She seemed to be challenging me.

“I guess I could try to run all four laps without stopping,” I said.

“Try it and see or you’ll never know. Then add another mile, and so on.”

So I pushed myself. I made sure to lift up my feet and not trip over the turf. I propelled myself forward. Soon, I accomplished my one-mile goal. Then I’d walk. Run another four laps, followed by a lap of walking. Could I make it for the third mile? Some days I did. Others I didn’t. I went on to master a fourth mile. My goal is at least five miles of good running speed. That's twenty laps or more, depending on how many extra miles I ran. I came earlier and stayed later than others who used the track.

In my effort to reach my smaller goals, I didn’t even notice that I was accomplishing my biggest goal. I was running just like every other runner! I had the same concerns, the same shortness of breath, the same blisters, but also, the same great feeling afterward.

God was answering my prayer by giving me this outlet, a very specific Amy-time to dash. Once I realized this, I began to respond in a more positive way to using my cane at other times, when it served as a helpful tool around town and at night.

When I started running in the springtime, I was grappling with some heartfelt questions. They weighed my mind down exactly like the excess weight that had accumulated over the past winter weighed my physical body down. Undisciplined thoughts oozed out and accused God of neglect just as my muscles accused me of neglect when I attempted to run too far. I never could stretch them adequately. I treated my mind the same way by not stretching it long enough in the proper direction.

Besides wondering how I would cope with more vision loss, I worried about finances. I could barely support myself with the job I had. With my poor vision, I was unable to drive to find a better-paying job. Yet I was denied a government disability that would help me financially. Should I retrain, and if so, where and how would I pay for it? Also, I felt a need to share my life with someone. When would God would provide me with a Christian partner? During my morning devotionals, God remained silent on these issues. As spring turned to summer, my prayer group disbanded and that support also slipped away. God refused to spell out any answers to me. I didn’t know how to move forward or what choices to make. Meanwhile, I met someone but I wasn't sure how secure the relationship was or how God was going to work it out. I needed direction. Most of all, I wanted to feel at peace with my decisions. But any peace I felt was short-lived.

As summer progressed, something else began to emerge out of the time I spent at the track. Along with the clear proof that my breathing became more regular with longer runs, I noticed that God was toning my body. He began to build endurance in my legs and feet. I ran further. But along with the physical changes that came over me, God began to build spiritual stamina in my mind as I ran. When I railed at Him or complained about my choices and begged Him to tell me what to do, my thoughts began to untangle. The more I ran, the more the words came out from the pages of the holy book and into the voice I imagine Jesus having. God’s conversations with me deepened and I knew He was honing my responses, stretching my belief.

Some decisions came easily, “Take this second job I’ve opened up to you. You don’t need the disability pay. I will provide.” As far as pursuing more education, I felt Him say, “Hold off on that. I am placing you in your area of teaching expertise. This is a start and what you need for now.” But some questions remained unanswered. I pushed, “God, about this man I’ve met...?” I felt early confirmation but of late, God has remained silent. I want to trust Him. When it comes to the desires of my heart, my faith-muscle seems constricted. My me-muscle is stretched, bulked up and ready to explode into action. Finally, I humbled myself. “Lord, let me continue to wait on Your timing and trust You in every aspect of my life, including this one. ”

As August begins, I realize I’ve almost reached my goal of running a strong and fast five-mile race. Though my only competitor is myself, I feel the goal is well within my reach. That young blind woman who longed to run so freely without her cane early in springtime got her wish. God has given me lots of sunshine to train my mind and muscles, but I had those rainy days in which I didn't do well in exercising either. But now when I face the mirror, in spite of my poor vision, I glimpse the contours of the mature, disciplined woman God envisions me to be. God does that. He starts with our insecurities and unbridled passions and uses them along with our circumstances to transform us into a fitter, more-toned version of ourselves, but only if we let Him.

Peace ... Ours for the Taking...

“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled, and do not be afraid.”—John 14:27, NIV

Last year, I struggled with teaching a new course at the college, and two new courses at the high school. In some ways, my life felt like it had fallen apart. I had new vision loss (a much bigger chunk) and added hearing loss to the equation. I was told I should use a blind man’s cane … well, for the rest of my life. I was not reconciled to living my life with these obstacles. In fact, some of my friends insisted I was in denial!

This year, the scripture above changed my outlook. I realized that God had a plan for my life, and that plan included Retinitis Pigmentosa and Usher’s Syndrome (the names given to my vision and hearing loss). I realized that I had two choices: to accept or rail against these changes. As far as I know, God has no plans to remove them. So, little by little I allowed God to change my heart toward my circumstances. I began to see myself in a different light and to be proactive—to develop the skills I would need to cope with these problems long-term. Once I took that step, God placed a much greater peace in my life. Needless to say, this year I’ve taken greater steps in my personal spiritual growth.

January started out with despair. I still pretended to be in control and acted as if I didn’t have any vision problems whatsoever, which, of course, only enhanced my inability to deal with it. I thought I was hiding it from my colleagues and students, but really it controlled me, and left me appearing inept in both professional situations and personal circumstances. One day, in tears, I asked my sister-in-law, “Why can’t I tell my students what is going on? Why can’t I get the words out?” How could I be so self-conscious … and flawed?! I put myself down all the time. It came out in the form of jokes with my friends.

But once I began my cane training in February or March, my attitude began to change. Each time I went out for cane practice with my mobility instructor, I came back with more confidence. God led my principal to ask me to share my experiences with the high school student body. Shocked, I didn’t think I would be able to follow through on her wishes. But by May, God not only enabled me, He gave me such an enthusiasm for sharing that I brought every visual and hearing aid tool I could think of. I wanted to give our students an idea of how God provides so abundantly for us in our circumstances!

When I began to read Braille, I bubbled over with more excitement. I began to practice every day. It was simply another language to me. By this time, I had developed an excellent rapport with my counselors at the Blind Center. My mobility trainer suggested I get more intense training in Louisiana. Instead, God provided another training opportunity closer to home in Cleveland where I could learn these same skills.

I spent three weeks blindfolded, at my insistence, to learn adaptive techniques that would make me successful when more vision loss came my way. My trainers and colleagues all had less vision than me! I learned that blindness encompasses a range of loss-from legal blindness to total blindness. Exposure to other blind people taught me that none of us were flawed in the way I once envisioned. Instead, I felt empowered.

Every time I turned around that scripture came to mind. When I felt overwhelmed, God would remind me who was in control and peace would seep back into me.