retinitis pigmentosa – Page 18

Satisfied: The Graveyard on Christmas Part 1

This month’s warm weather, particularly our 65-degree Thanksgiving, brought back memories of Christmas Day last year, an oddly-warm 25th of December.

After opening numerous presents that morning, my then-5-year-old sat and played with her new treasures. After about 20 minutes she asked, “mom, aren’t there any more presents? I want some more.” I thought back to 3 years before when she was two-and-a-half years old, and how, after only 3 presents, she said nonchalantly. “that’s enough.” and refused to open more. She wanted to just play with the same 3 presents all day until finally being coaxed to open the rest later in the evening.

I couldn’t help but wonder when the shift from “plenty” to “empty” had occurred in my little girl. I imagine that gap between satisfaction and always-wanting-more will only increase as she gets older, as it does with almost all of us.

Could it be this feeling of want that creates the chaos surrounding the holidays despite the soft, underlying pleas for a peaceful, Silent Night?

I’m not lecturing here…. I clearly enjoy a good Black Friday sale and find myself craving the holiday craze at times. And I have definitely gotten myself wound up about a house that doesn’t feel decorated enough.

But the memory of a simple, satisfying trip to the graveyard with my family on Christmas Day last year evoked a desire in me for a quieter December this year.

I decided to adopt the “wrapped and done by December 1” motto so that I really can sit back and celebrate a peaceful holiday season this year. And it’s not just a lofty goal– I started shopping a bit this summer and finished today.

I’m ready for some Silent Nights.

I’m ready for more moments that match this one from Christmas last year:

It began after dinner at my grandma’s house. We usually take long family walks to digest our afternoon feast, usually to the nearby Riverwalk, but this particular year we decided to visit my grandfather’s gravesite about a mile away. Though buried 2 and a half years prior, his stone had just recently been engraved and we all wanted to see it and take a few moments to remember a man who was important to us

Weather-wise, this was a rare midwest day in December, reminiscent of late October, the faint scent of burning leaves and a hint of distant cold air to come. We walked without mittens, our feet free of heavy boots, the air far more refreshing than startling.

We arrived at the cemetery, our shoes crunching on leaves and our voices chattering away, signaling our arrival to the departed. I can only imagine my grandpa chuckling to himself, “You really know how to make an entrance.” he’d say with a dimpled grin.

While standing in a sloppy semi-circle around my grandpa’s grave, singing some of his favorite tunes, such as “Singing in the Rain” and “You Are my Sunshine”, I felt it– that nearly-extinct sense that everything is right in the world despite so many wrongs.

I think the moments that I sit back and say “enough” and sigh with deep satisfaction are few and far between, but I think they’re worth noting when they do occur.

It will probably be more difficult for my family to have that rare feeling of satisfaction this Christmas, as my grandmother recently had a stroke, and the fatigue of figuring out her care has been weighing on many. The future is uncertain, as it always is, I suppose, but a little less comfortably for the Kuhn family right now.

For me, this is all the more reason to keep things a little less chaotic this December.

This year, there is reason for the air to feel different during the holidays, and even if it is a little brisk at times, I hope to sit and breathe it in.

Do Better

My husband and I like to tease a friend of ours for his harsh response to a fast-food worker who messed up his order 3 times. She had all sorts of excuses for why she kept messing up the order, and he was sick of listening to it, so he looked straight at her and said “Do Better”. We thought it was a bit of an over-reaction and didn’t offer her much grace. I know we all make mistakes, especially at work. But after the week I’ve had, I feel like I want to shout “DO BETTER” to the world.

I hesitate to even write this post as I don’t want it to come across as a wild rant or pity party. I doubt most people enjoy reading a rant any more than they like listening to one. So I will try my best to explain what the last 3 days have been like for me without overstating my frustration. I also want to apologize in advance for the amount of details I’ve included in the below timeline of events. It’s boring to say the least, but I think the details are necessary to understand my story.

On Monday, I had an appointment at Seattle Harborview Medical Center’s Eye Institute. My husband took the day off work in order to drive me to and from my appointment and keep me company through the long list of tests I needed. (note: We live 2 and half hours away from the eye clinic.) It had been quite some time since I had all the tests necessary to make sure I don’t have glaucoma or cataracts (people with RP are more likely to develop those conditions), visual acuity exam, peripheral fields test, and pictures of my retina. I needed this comprehensive list of tests in order to apply for cane training services. When I arrived at my appointment, I handed the medical technician a 5 page form from the WA Department of Services for the Blind (DSB). She looked over the paperwork and told me the doctor would be able to complete the forms after all the tests were finished. I then spent the next 5 hours in Harborview’s eye clinic, most of which was spent sitting in the waiting room with elderly people.

During my 5 hour stay, they did a basic eye exam (charts, letters, lights – something similar to what most people receive at their optometrist), received drops for the pressure tests (glaucoma, cataracts), and posed for a glamorous retina photo shoot. I was examined by several resident doctors and observed by a young medical student as well. Four and half hours into my appointment, I finally got the chance to meet with Dr. Chou, the ophthalmologist and retina specialist. She explained that she was sorry for the misunderstanding, but I had been scheduled at the wrong clinic. I should have been at the clinic across the street where they do all the testing for retinal degenerative diseases (field tests, laser scans, etc). She was not sure why the person scheduling my appointment had not sent me there in the first place or why no one had caught this mistake earlier in the day, but assured me she would speak to her clinic manager about the issue. She was unable to complete my paperwork for DSB because the only tests they had completed showed that my central vision was still in tact and well above what would qualify for any type of services. I was supposed to have my forms complete for my DSB appointment the following morning, so I had to change my DSB appointment to Wednesday afternoon and go back to Harborview on Tuesday to have the correct tests.

Luckily I was able to stay at a friend’s house in the Seattle area, but my husband could not drive me to the new appointment because he had to work. So I paid $47.50 for a taxi to take me to Harborview on Tuesday morning. I requested a reimbursement from Harborview considering their scheduling mistake, but was told “that’s not something we do”. Once I arrived at the correct clinic, the tests and paperwork were completed in under an hour with no time in the waiting room. Now fast forward to my DSB appointment on Wednesday afternoon. Just getting to the DSB office was challenging in itself because my morning sickness suddenly returned while I was in the backseat of a swerving taxi that smelled strongly of curry mixed with incense. I somehow managed not to lose it in the cab, but I was green with nausea by the time I stumbled into the DSB office. A kind case manager shared her crackers with me and brought me water. I then met with an equally kind case manager who asked me all sorts of questions about the type of work I had done in the past and what type of work I would like to do in the future. I was confused by her questions as I thought I was at this appointment to talk about my vision challenges and cane training. When I steered the conversation away from work and towards cane training, the counselor was the one who looked confused. She then explained to me that the DSB mainly provides job services for people with vision disabilities, and that they don’t have funding for just cane training. She profusely apologized for the misunderstanding, but told me that the person who scheduled my appointment should have asked me if I was looking for cane training as part of an active job search. She also indicated she had a feeling she knows who I spoke with initially and that she will follow-up on the issue. This was all beginning to sound too familiar.

I am a well-educated, intelligent, assertive, middle-class, fluent English speaker who cannot effectively navigate our health and government services. I grimace at the thought of what elderly, uneducated, mentally disabled, immigrant, limited English-speaking individuals go through to obtain the proper health care and government services they need. I know there are plenty of sick people and disenfranchised individuals that have to trudge through this confusion on a daily basis, and I honestly cannot comprehend how they do it.

Now here’s the rant I promised not to indulge in. Considering the current economy where so many people are out of work and the job market has grown more competitive, I am surprised that Harborview and the DSB cannot find more competent people to answer their phones and schedule appointments. I know that I have a rare eye disease that not many people are familiar with, even within the medical field, but all these individuals had to do was spend a few extra minutes on the phone with me to avoid a whole mess of confusion that cost me time and money. Looking back, it seems that the main goal of these receptionists was to get me off the phone as soon as possible rather than responding to my actual requests. It would have taken very little effort for them to “do better”.

My mom always encouraged me to see the positive in any situation, so here goes. The Harborview ophthalmologist invited me to participate in a stem cell research project she is working on following my pregnancy. Although she cannot promise any grand results, it is a rare opportunity for me to see how my actual stem cells react to various trial drugs. (they use my cells in a petri dish, so it is non-invasive) In addition, I learned a lot about DSB services that could benefit me in the future when I return to work. Meanwhile, I am looking into other options for cane training in my state. I’ve decided that I will ask to speak to multiple individuals before scheduling my next appointment to make sure I am being told the correct information over the phone. Then hopefully I can avoid telling anyone to “do better”.

Spectator

Today I was a spectator. I observed what most of us know well– life is full of hard and beautiful and interesting scenarios. We don’t usually see all of those scenarios in one day, but today I forced myself to sit back and just take them all in.

From the moms at a playdate who bonded over their painful struggles with mentally ill parents to the coming-together of neighbors and families to commemorate a historic life and place, my day couldn’t have been much fuller. Even though I have nothing to do with our neighbor’s historic home and cannot even imagine what it would be like to have parents with borderline personality disorders, I was invited in to these peoples’ stories.

If you’ve listened to many motivational talks, sermons, etc., I’m sure you’ve heard the cliched metaphor about joining in the game of life (i.e. “Are you going to sit on the sidelines and be a spectator of life, or are you going to play the game?”). The spectator role, it seems, is not the preferred one and is not what we should be aiming for. But as I was tucking in my girls tonight, thinking of all I’d witnessed today, it dawned on me how very much a part of it all I felt despite my periphery role.

And I thought about what an important role spectators play. What would a football game be without fans in the stands? And what would a child’s first piano recital be without proud parents watching? And how hollow would the world seem if every person was always in the middle of the action but no one was stopping to observe the beauty in others? Or the pain?

I think that’s why I appreciate artists so much. They stop and observe. And then I get to see all the side stories–the ones that don’t make the nightly news– in paintings and songs and poems.

Our neighbors’ home was “plaqued” today (not to be confused with a dangerous plague or vandalism– they actually had the local Historical Society present a plaque which will hang on their front porch). They had a little gathering, complete with appetizers, wine and a pound cake from a 100-year-old recipe, in which a little ceremony of sorts took place. Since their home belonged to a locally famous historian and writer, Hannah Ditzler, they had an entire scrapbook about her and even some of her distant descendants attended. The gentleman from the Heritage Society was remarking how Hannah’s detailed diaries give us a picture of what life in Naperville Illinois was like in the late 19th-century, and her detailed sketches of the home are remarkable.

Standing in this small, warm crowd of people who were simply celebrating the fact that someone took the time to observe life in Naperville in the 1800s made me pause. Even though I like to think that, with the many bloggers and journal-keepers out there today, we will have more than enough written records for future generations, I also wonder how much we take the time to observe what’s really going on around us.

Not feeling benevolent enough to observe for the world’s sake? Well, it benefits you too. Observing others’ stories takes us out of our own heads for a moment. Truthfully, I haven’t been blogging much lately because I’ve been working on more fiction writing. Both reading and writing fiction is comforting to me because it takes me out of my own world with all its little problems. I get to live vicariously through elephant trainers in the 1920s and teenage fugitives in future societies. But there was something a little more powerful– or at least more real– about being drawn in to the stories of actual people around me today. I felt like I was contributing to their story just by being there with them.

It made me think about how the next time I’m feeling insignificant sitting on the sidelines, I am a significant spectator.

News Flash

It’s been almost a full month since Joy or I have posted anything. Shame on us! It’s not that we haven’t thought about blogging, but we’ve both been a bit pre-occupied. Also, neither of us like to post out of any sort of obligation. We like to write when we have something worthwhile for our readers. Today I have something worth mentioning on the blog. I’M PREGNANT!

Perhaps you’re wondering why I am wearing a mask in this photo and why the pictures to the right look blurry. It’s not your vision (or perhaps in some cases it is…) It’s smoke. I live up in the mountains and we’ve had wildfires over the last 4 weeks, which has caused a tremendous amount of smoke in our county. Between morning sickness (which I think is misleading considering the nausea often lasts the entire day – not just in the morning) and the smoke stacks, I’ve been a bit distracted. But I’m happy to report that I am now 14 weeks along and feeling so much better, and the wildfires have subsided as well.

I will have more to share in a couple of weeks following my eye appointment in Seattle along with my first day of cane training. I need to get as much done as I can before baby number two arrives in spring!

Take it Easy

My grandpa Bob passed away a little over three years ago, and yet I still remember vivid details about him. Like the way he would gently say “Easy now” to anyone acting a little too rough. Actually, that was his response for a lot of situations – when his wife shouted bossy commands, when my siblings and I fought, when someone cut him off in traffic. I can sometimes hear his soft words as if he’s still right next to me telling me to just take it easy. And although I have so many other fond memories of my grandpa; I think that “easy now” is my favorite because it’s something that reminds me to calm down and be kind to myself and others just as he was. Continue reading “Take it Easy” →

When Life Reverses: Part 2

It’s Sunday night, and I”m tired. But it’s a good tired. Ben and I played a lot with the kids today. And we put on rain boots and jackets and went splashing through puddles as we walked to Lou Malnati’s for pizza in the pouring rain.

And I was reminded today, as I was throughout this whole past week, how life reverses both ways. From perfect, sunny days that turn rainy all the way back to rainy days that turn out to be fun despite the puddles. Or perhaps, because of the puddles.

To give you the end of last Friday’s story, Lucy continued to cry all the way home. When she continued to sob at home, I got desparate for something to calm her and went up to my closet where I store future Christmas gifts (yes, I know it’s only August, and I’m ridiculous for starting already, but I pretty much am a single-parent the month of December since my husband is in ministry, so I like to just get it done early). Anyways, I went in the bin and grabbed the one thing she has been asking for the past year that I finally found on ebay– a retro Rainbow Brite doll (yup, that’s what I get for thinking I’m a sly, early shopper– the best gift is already ruined!)

And as I’m handing it to her, an even larger feeling of guilt sweeps over me as I realize that I’m instilling a materialistic comfort habit that will probably lead to her becoming an emotional shopaholic one day. (honestly when I told my husband about everything, he was completely understanding about the stroller accident, as something similar happened with him and Lucy and a bike a couple years ago, but he was really upset that I pulled the doll out!)

It did the temproary job of calming her down, however, and reassured me that the crying (which ceased immediately) was dragging on more out of fear than pain.

But as quickly as her tears vanished, mine appeared. An old friend had stopped by to see our new house, and as I was showing her the upstairs, I felt my voice break and I couldn’t compose myself. She, of course, told me that I was being too hard on myself and that she had done so many similar things when her boys were young.

And you know what? Throughout the entire past week, I received comments and e-mails from people, sharing their “guilt stories” of ways their kids were injured on their account. And while a couple of the stories honestly disturbed me, they really did help. A couple of them even made me laugh and smile to myself.

And as my week progressed, I realized that there are a ton of reversals that occur in the span of a week, or even a day for that matter. And sometimes life seems to reverse on its own when we give it a moment…..like when Lucy was pouting on Wednesday because there was a toy she wanted that I wouldn’t get her at the store. She ran into her room and shut the door, and I was too frustrated to try to reason with her, so I just sat on my bed and read with Elli, feeling like I had created this material=hungry little blonde monster. But to my surprise, a few minutes later, she came hopping up on my lap and thrust a handmade card in my face that said, “I’m sorry mom. I love you, daddy, and Elli more than things.” followed by a great, big bear hug.

And while I beamed and hugged her on Wednesday, I found myself feeling irritated on Thursday when both girls were whining and kept begging to watch tv all afternoon. I kept waiting for the day to reverse on its own– for the girls to come prancing up to me with handmade cards again that said “We will never whine again and we don’t even care about tv!” But the cards never came. And I kept thinking, “Why does it take so much to make them happy?”

And it was then that I realized that it was my frame of mind that needed a reversal– not my day. I got out some play doh and sat on the porch with Lucy while Elli took a little snooze in her stroller near us. We sat and chatted and played, and it seemed like just that hour of one-on-one attention turned the whole rest of the day around. She frolicked around the house the rest of the night, singing little songs.

And I kept thinking, “wow, it takes so little to make kids happy.”

So I guess this is just how life is– one reversal after another. And while it often takes so little to turn it around, it does take something.

Whether a pause. A prayer. A deep breath. An empathetic ear. A shift in consciousness. A brief moment of reflection is worth the likelihood that the day– or week or month or year– will turn around.

When Life Reverses: Part 1

Have you ever had one of those days where you wake up feeling like you could conquer the world and go to bed feeling like the world conquered you? Friday was one of those days for me.

It was one of those rare, Midwest gift days in August where you wake up and open the windows because the humidity has finally dissipated long enough to turn the A/C off for a day or so.. On days like these, there’s no wrong thing to wear. Whether long sleeves or tank top, you are neither too cold nor too hot because the sun shines brightly, complimented by a crisp, clean breeze.

It was also my first free day with no plans in awhile and felt like the perfect day to get really serious about potty-training my 2-year-old, with my oldest daughter back in school As soon as I put minnie mouse underwear on her, she immediately ran to the potty and knew just what to do (though she forgot a minor detail that required some clean up– pulling her pants down– but close enough!) She then asked to go to Starbucks to get vanilla milk and I thought that would be a good reward (yes, my 2-year-old is a Starbucks fanatic, thanks to her dad!).

Before we left, I saw a facebook message pop up on my phone that said a good friend of mine had tagged doublevision blog and wrote how I inspire her. And then I saw an e-mail come in from another friend who clicked on her link and read our blog. She sent me an encouraging e-mail, saying how brave she thinks I am and how she related specifically to a certain post.

So I left on the 2-block walk to Starbucks in this perfect weather feeling on top of the world. Everyone I passed seemed to smile or greet us with happy conversation. Even the birds were attempting to join in the casual conversations. And a bagpiper played beautiful music in front of Starbucks to help raise money for firefighters’ families (seriously, what is it about bagpipes that always gives me goosebumps?!)

I sat on a nearby bench and listened while sipping passion tea and watching my toddler happily slurp down vanilla milk in her stroller. I watched as car after car stopped to hand firefighters dollar bills, showing no sign of a recession anywhere nearby..

As I walked home, I felt like everything was right in the world. I felt good that I had handed a donation to the firefighters. I was elated that little Elli was still dry. I felt inspiring and brave and proud.

And what’s that they say about pride always proceeding the fall?

The day turned on me like over-ripened fruit. Elli peed on our new rug 2 minutes after getting off her empty potty chair. I opened July’s electric bill. Two small foreshadowings of the havoc to come.

I picked my first-grader up from school and asked if she wanted to walk to the shoe store for new school shoes. She was excited and jumped in the wagon, but Elli cried for the stroller so I caved and decided to do the “faux double stroller” with Lucy on top of the stroller (as shown in “Mama on the Move“) As we approached the shoe store, I remembered that we hadn’t brought socks to try on the shoes, and not wanting to spend extra money on socks at the shoe store, I decided to walk the 2 blocks back to grab them from home. Since a friend called to say she was stopping by in a half hour, I began walking quickly, wanting to make sure that we had enough time at the store. I usually try to go slowly when I’m pushing the girls “double-decker” style and hold on to Lucy while pushing, but I was in one of those hurried semi-frenzies as we crossed the street to our block. I was trying to get across the street quickly since there was a car waiting (and I had recently been told by my sister that I’m kind of a slowpoke crossing the street when cars are waiting!) In my haste, I misjudged the distance between the curb and front wheel, and felt the stroller jerk back in protest. And as if in slow motion, my precious Lucy went flying off the stroller headfirst onto the cement sidewalk.

Immediately, people surrounded us and a man ran for ice. Lucy stood up right away but began running hysterically in circles, shrieking in pain. I caught her in my arms and just cradled her, repeating “baby, I’m so sorry” over and over, vaguely aware of Elli staring at us from her stroller, wide-eyed and onlookers shuffling around awkwardly, trying to figure out how to help. The people from the waiting car had kindly pulled over and were looking at her pupils and trying to reassure me with the fact that Lucy has rolled, shoulder first and hit her cheek, not landing head-on. A bruise had already started to form, and Lucy continued to bawl and shriek.

I think the woman from the car could tell that I was mortified and ashamed because she began telling me how her niece did the same thing a few days before. I nodded politely but I couldn’t let myself be comforted. What kind of mom was I?

I felt this ball of guilt and regret in the pit of my stomach. And I felt not one bit inspirational. And not brave in the least. And as I pushed the stroller home, Lucy walking close and whimpering at my side, I felt like nothing in the world was right.

Drama Triangle

I vaguely recall learning about Stephen Karpman’s Drama Triangle in a general psychology class years ago. I recently decided to take a closer look at the 3 roles Karpman pinpoints (persecutor, rescuer, victim) because I was feeling like I might be playing the victim role in some situations in my life. I was trying to figure out why there are certain family/friends or even strangers who seamlessly offer me assistance in dark or crowded places and I feel no sense of shame or inadequacy. I walk away from these situations feeling grateful for their assistance and yet still confident and independent. While there are a few people in my life who awkwardly grab my arm and forcefully “guide” me in the direction they’d like me to go. I leave these situations feeling stupid, embarrassed, helpless – a victim. Rather than repeating these uncomfortable situations, I am trying to come up with new assertive ways to stay out of the victim role.

Simply communicating with people about my needs and preferences is key to avoiding victimhood. Although I studied interpersonal communication as one of my majors in college, utilizing these skills can be challenging when it comes to RP. I get nervous, I freeze up, I think all sorts of thoughts in my head, and cannot seem to effectively articulate myself. I’ve started “rehearsing” various situations in my mind and with trusted friends. I know the more I practice communicating my needs, the better I will become at reacting to or preventing awkward scenarios. I’ve also spent time reflecting on past situations and what I liked or did not like about how I handled them.

In addition to taking a closer look at my own behavior in these scenarios, I also decided to learn a little bit more about the “rescuer”. People that take on this role feel a strong need to help others, although their motives are often focused on their own self-esteem. Now I am certainly not labeling anyone as a dysfunctional “rescuer” just because they’re eager to assist me when I’m having trouble navigating. I’m not even entirely sure the drama triangle can be applied to the awkward encounters described above. I am mainly trying to identify what these situations can teach me about myself and others. After some careful examination, I have come to the conclusion that certain people just need a little extra assistance learning how to assist. Sounds funny, I know. But stay with me.

I think that the people who help me in forceful or awkward ways would choose a different approach if they could envision themselves with RP or any sort of disability. I was touched by a story a friend told me recently about a photographer who wanted to know what it was like to live with RP after his best friend was diagnosed with the disease. He made pinhole glasses for himself and wore them everywhere he went for an entire month. The range of emotions he went through were very real, despite the fact that he knew he could take off the pinhole glasses at anytime. I can’t say for sure, but I would be quite surprised if this photographer plays the “rescuer” role in life.

For me, one of the best ways to stay out of the dysfunctional darma triangle is to simply be aware of it. Not every situation may play out exactly how I want it to, but I do have the power to be assertive and pre-emptive. For example, at a family reunion this summer, everyone hiked down to the beach on the 4th of July. I knew that I could make it down the steep rocky hill by myself as long as I walked slowly and carefully planned each step. I also knew that there were some family members that would feel too uncomfortable watching me walk at such a slow pace and that they might start quietly gesturing each other to help me. So rather than creating a situation that made me look or feel like the “victim” that needed a rescuer, I chose to simply ask an aunt if I could grab her arm on the way down. I’m not sure if this was the “right” solution. I don’t necessarily think every situation has a “right” answer because it’s different for everyone. Someone else may have grabbed their cane or a walking stick from the woods nearby and announced “Just so everybody knows, I will be making my way down to the beach using this stick!” thus maintaining independence and settling onlookers potential fears.

Looking at the various roles in the drama triangle has been a real eye-opener (hee hee – I love those eye puns) for me in all areas of my life – not just RP. I am able to recognize situations and relationships where I have taken on the roles of persecutor and rescuer. Sometimes breaking out of these roles is as simple as investigating our own motives. We all have control over our own words, actions, and choices. We have the power to break out of any of the roles we’ve allowed ourselves to step into in the past. I came across this quote that I think says it all for me in my struggle to stay out of the victim role with my vision. “Argue for your limitations, and sure enough they are yours!” – Richard Bach

The Last Straw

Unlike my sister, I do not have a cane and have not received any mobility training. Similar to most people, I had considered canes to be something you start using once you are completely blind. It had never been introduced to me as a tool “to help you not run into anything” as the mom simply explained to her child in Joy’s last post.

As Joy also mentioned in her post, I contacted my state’s department of rehabilitation regarding cane training on the exact same day as she did. Although it would be fun to pretend that this “coincidence” has something to do with twin telepathy, I think it is actually the result of Joy meeting with the young lady with RP who began using her cane as a junior in high school. For some reason hearing that was the final straw for me. It seems strange to me that this was the final straw that motivated me to look into cane training considering I have had so many experiences or rather literal “run-ins” that truly should have been the last straw. (which for our International readers is a phrase often used meaning The final additional small burden that makes the entirety of one’s difficulties unbearable.) Why didn’t I get a cane after I punctured a hole in my shin during a cross country meet because I didn’t see the bleacher? Why didn’t I get a cane when I was feeling anxious about navigating my way around campus my freshman year in college? I could spend days coming up with similar questions, but instead I will choose to focus on the present fact that I am getting a cane.

I am sure there are readers wondering why my sister and I are making such a big deal about something as simple as using a cane. Why is this so challenging and why are we analyzing it so much? I know there are plenty of visually-impaired people that seamlessly use their canes and do not feel it defines them in any way. I have read some inspiring blogs written by people who explain that they don’t even consider vision loss to be an issue or struggle in their lives. While I have every intention of getting to that place, it is just not where I am right now. It means a lot to me when people accept me exactly where I am, even if it is not where they think I should be or where they are. I hope that doublevisionblog is a place where people can feel okay to be exactly where they are in their journey with vision loss or anything they might be struggling with in life. I will be adding updates regarding cane use to the blog as I receive training this fall.

Cane-o-Phobia

Several weeks ago I met with this remarkably confident, intelligent teenager who has RP. Her and her mom read our blog and live in the same area as I do, so her mom thought it would be helpful for her to talk with someone who has “been there”.

While I had hoped to provide all kinds of helpful mentoring during our meeting, I walked away feeling like I had been given some wisdom in regard to a fear I have: cane use.

Even though I received mobility instruction (aka: cane training) during grad school 10 years ago, I have felt too self-concious to use my cane in public despite the fact that it could really help prevent my many run-ins with objects and people.

This young lady shared with me about how she began using a cane mid-semester in her junior year of high school this past year after she ran into a garbage can and another student. Though my vision was less than hers when I was in high school, I tried to imagine myself using a cane in the hallways of Naperville North and felt my face flush red just thinking about it.

She went on to say that it was difficult at first, answering questions from students wondering why she was using a cane when it looked like she could see or why she started using it all of a sudden. But she persevered and continued to navigate the hallways of her high school confidently. I think about all the people she has been able to educate about low vision just by using her cane in school.

And I think about all my missed opportunities to educate people about low vision and RP– people I’ve allowed to believe I am inebriated or rude or ditzy instead of simply showing them that I can’t see well.

So the day after I met with this courageous young woman, I decided to at least just start carrying my collapsible cane in my bag so that I could pull it out when needed. I’ve used it now 4 times in public in the past few weeks– more times than I’ve used it in the past 10 years.

I used it at the DMV when going to renew my state id, which ended up paying off because apparently they waive the $20 fee if you are visually impaired. One odd thing I noticed was that everyone I came in contact with, whether DMV worker or patron, called me “honey”, “hon”, or “sweetie”. Since I don’t live in Texas, I got a little paranoid that it was because of the cane. But maybe it was just some weird DMV lingo or something. Or the DMV’s recent attempt to make their facilities more pleasant. Anyways…

The second place I used it was in the library with my girls (a place where I’ve had the most “run ins” because it’s going from light to dark in a crowded, smaller space). My paranoia at the library is that people will see me reading a book aloud to my kids after setting down my cane and think that I’m faking blindness, but a good friend pointed out that there are far better ways to get attention than blindness, so it’s not a very likely assumption. Plus, it provides a great opportunity to educate people if they ask about it, which actually brings me to the third place I used it– the train station.

My girls and I rode the train to Aurora– a nice, short ride– a few weeks ago and absolutely loved it. As we were waiting for the train, my 2-year-old was having the time of her life playing with my cane– swinging it around like a baton and whacking her teddy bear in the face with it. A man asked me whether I could see anything because he was nervous that she was going to hit me with it. I explained to him that I could, much to his relief. And considering that only 10 percent of legally blind people are actually totally blind, I do think it’s important to educate the public about the other 90 percent of people who they may see using canes. (http://en.wikipedia.org/wiki/Blindness)

The final cane use was the most difficult for me because it was while we were out with friends. The DMV and library were relatively easy because everyone around me were strangers. But there’s something about pulling out my cane in front of family and friends that is the most difficult for me even though I know they would be supportive (and probably relieved they don’t have to drag me around in crowded places!). Typically when I’m with people I know, I link arms with them when it gets dark or crowded so that I can find my way around, but when we were walking downtown a couple weeks ago, it was literally 102 degrees of pure steam outside, and I really didn’t want to make one of our friends even hotter by linking sticky arms. Plus, these particular friends are two of the most non-judgmental, laid-back people I know, so they made it easy to be matter-of-fact when pulling out my cane. In fact, I loved how my friend simply explained to her son, who was curious about the cane, that it was helping me not run into anything– no long, drawn-out explanation or stumbling over words– just a simple, true statement.

I’ve been trying to figure out why simple, true statements don’t come to my mind when it’s time to pull out my cane. Instead of thinking “this will help me not run into anything”, I start writing a novel in my head about all the many things using a cane says about me and all of the crazy assumptions people will make. If I use it walking Lucy to school so that I’m not constantly running into a crowd of kids and parents, for example, what will the other parents think of me, and will they still trust me to supervise their kids for playdates at my house? I can admit that about half of the thoughts that run through my mind are ridiculous, but there are also some real fears here.

And after joining a Facebook conversation about cane use (Room With a View ladies’ rock!), I know I am not the only one. One of the women in the group actually coined the term “cane-o-phobia”, and it’s interesting to read comments all over the spectrum– from people who are terrified of the idea to people who are comfortable with it but whose families are not, and people who are so adamant about cane use that I’m slightly afraid they’d use it as a weapon (kidding, of course, but they do scare me a little). One simple comment that helped put things in perspective for me said, “None of us want to be labeled as disabled, yet we want to be accommodated. Having some sort of visible signal empowers others to be helpful. Not everyone’s great at it [being helpful], but I think the benefits far outweigh the stares and rude people.”

So here’s where I’m at with it at this very moment: I want to start using it regularly but don’t even know if I’m really holding it correctly. I put a call into the department of rehabiiliation, have faxed them my medical documents, and am now awaiting a mobility instructor. Ironically, my sister and I, living 2000 miles apart and having very little discussion about this, actually each indiividually called our state’s rehab offices on the same day. Jenelle has her own thoughts on the subject, so I will let her share from her perspective, though we have joked about having a “coming out” week (similar to the undocumented immigrants who have come out recently!) in which we both start using our canes regularly. Until then, I will be okay with pulling it out randomly and somewhat awkwardly, knowing that it’s a start.