The #1 Way to Assist a Person With RP in Public


Friends and family have often expressed to me and my sister their concern over whether they are being helpful when we’re out and about.
We have told people there is no right or wrong way, and no specific expectation, This is half-true.  I posted a list of tips and pet peeves a couple years ago, though looking over it now, it may be too detailed to remember.
Some friends have observed our husbands’ interactions with us and followed their lead.  This is an overall wise idea, as our men have been with us long enough to help us seamlessly.  My husband, however, has been known to be so laid-back and hands-off that I have walked into signs and fallen down a flight of stairs walking right next to him!  This may be why he recently told me that he feels excited when I pull out my cane.
I still struggle with regular cane use, except when we’re on vacation.  When we’re traveling, I feel free from worries over who’s watching me, since we’re surrounded by strangers.  Plus, vacation spots are always unfamiliar territories, so my cane literally becomes my tour guide….. not to mention my entrance into the fast-lane through airport security, ticket to boarding the plane early, and most recently, my magic wand whisking our family through the handicapped entrances to the front of the lines at Disneyland.  I would feel guilty about taking advantage of these benefits, but let’s face it, there really does have to be some perks when going blind from a degenerative retinal disease  Why else would anyone sign up for RP?  .
So if I’m not carrying my cane, and my husband is not nearby to observe, there’s one, all-encompassing phrase  that I’ve found to be most comfortable if you’re concerned whether I’m struggling.
“Need An Arm?”
This puts the pressure back on me (or whoever you’re helping), where it belongs.  I’m then able to either say “no thank you, I’ve got this” or “Yes, please!”
If the response is the latter, simply stick your elbow out.  If you’re standing to my right, stick out your left elbow, and vice versa.  This is considered “best practice” for guiding a blind person, and for a good reason.  If you were to grab, push or pull a person with low or no vision, it can be disorienting, especially if someone is trying to “steer” you.  When you offer your arm, I’m able to feel your movements and follow along.  My personal favorite thing to do with close friends and family is link arms.  I’m not sure if this is recommended practice, but it feels most natural (and fun!)  to me, like we’re best buds going for a stroll as opposed to “being led forth by my sighted guide”!  Of course, if you’re a stranger on the street, let’s stick to the elbow.
Of course, if someone is about to literally fall down steps or get hit by a car, do all the shoving and pulling you need to prevent a fatality.  Also, sometimes even with a cane, guiding is helpful, so it never hurts to offer, unless you’re constantly hovering.
There you have it, a fool-proof way to be helpful without being overbearing.

You’re welcome!


Book Review: “Now I See You”

“You’ve got to read the book I just finished,” I heard Joy telling my voicemail.  This was not an uncommon message for her to leave.  Recommending the latest and greatest books to each other has been happening since our “Sweet Valley Twins” days.

But what she said next sparked my interest a little more than usual.

“The author is a mom about our age who wrote a memoir about her life and she has RP just like us.  She actually sounds like someone we would be friends with.”

I instantly knew she meant that we would be friends with her because of her personality, not her RP.  I uploaded the book from Audible a few minutes later, and began the journey into Nicole C. Kear’s memoir “Now I See You”.

When Joy assigned this book report (yes, my English teacher twin demands that I contribute to this blog at least once a year), I wasn’t quite sure where to start.  I had not written a book review since maybe the 8th grade, so I decided to read a few reviews prior to writing this review.  Also, I was really curious to see what people were saying about this book.

I started with the professionals, The New York Times, and then moved along to blogs and finally ordinary people reviewing books on Audiible and Amazon.

Reading book reviews on these larger sites is a lot like reading hotel reviews.  There are your typical informative reviews that help you choose whether or not this hotel will be a good fit for your needs.  And then there are the disgruntled crazy guests whose reviews just make you laugh because it is obvious that no amount of amenities or customer service could ever satisfy this unhappy individual.

Which brings me to one review I came across in which the woman was, first of all, quite bothered by the amount of profanities in the book.  On the one hand, I could see her point.  I was raised in a house where “shut up” fell under the naughty category.  But I also watch R rated movies quite frequently, and if there’s anything that makes me want to drop the F bomb on a regular basis, it’s my vision loss.  Plus, the cussing in this case is a consistent part of the author’s witty, raw, and at times painfully honest voice.

Miss “No Potty Talk” continued, “Also, I was really hoping to read a book more about someone going blind.” This brief review made me laugh.  I knew instantly it was written by someone who had not had the enlightening experience of slowly going blind.  This person had an idea of what a book about someone going blind should be, and this memoir apparently did not sound like what she envisioned.  And for me, that is what I enjoyed most about “Now I See You” – one woman’s authentic experience of going blind.

As I listened to her stories, I often felt as though she were telling my story.  Only with a lot more profanities and Italian accents.  But still, so much of what she wrote resonated with me and reminded me of my own story.  Of course there is the obvious connection of having the same rare degenerative eye disease as the author.  But there are also universal themes in the book – shame, pride, guilt – that allow readers of all backgrounds to connect with her stories.

The humor and sassiness in which she conveys her memoir sent me into hysterical, audible laughter at times.  Her talent for writing comedy is right up there with Tina Faye’s “Bossy Pants” and Amy Poehler’s “Yes Please”.  While Ms. Kear is not a professional comedian, she does have a background in theater, which is why I highly recommend listening to this book for a full entertainment experience.

At parts of her memoir, Ms. Kear was literally living out my nightmares. Driving a motor vehicle with low vision for one, and navigating nightlife  in LA and New York City for another.  At other parts, she was living out my reality.  Bumping into fire hydrants and plowing over unsuspecting toddlers.  It was somehow comforting to hear about another young woman trying to hide her inabilities just as my sister and I have done.  And fascinating to learn that her outspoken, East Coast Italian family had chosen not to discuss her vision loss just as my mild-mannered, Midwest family had done.   These similarities were not just an odd coincidence, but a reminder of the human condition we all share.  

Double vision consensus:  Joy and Jenelle give it 4 thumbs up


Last summer I had the idea to start a legacy story-telling business that would help capture people’s life stories through video, audio and print. I bought 3 different domain names because I couldn’t come to a final decision, and the name I really wanted (Legacy Storytellers) was already taken. I worked on my web content, read and researched everything related to personal storytelling, met with experts in the industry, interviewed possible videographers, and began making plans to attend “The Association of Personal Historians” annual conference. I talked incessantly about my budding career plans, announcing to family and friends my goals for the year.

And then I took a little sip of air, often referred to as a breath.

And I exhaled for the next several months, wondering if this is the right time to start such an endeavor and feeling kind of embarrassed that I opened my mouth to so many people about it

Most unsettling to me was how quickly the passion that bubbled up over the summer fizzled, an opened 2-liter of soda stuck in the fridge for weeks, cap screwed on loosely.

Was I turning into one of those entrepreneurs with a million golden ticket ideas but never any follow-thru? The next eager inventor of everything bun in the end, nothing?

When I really think about it, it seems I have spent much of my life dreaming. Often escaping. Sometimes Utopian-izing, Thinking that my real life will soon begin. My Better Life. This new, posh life will start when….I find the right career, buy a nicer house, land a book deal, set my finances in better order, learn to make perfect risoto……and the list goes on.

I’m not from a small town, but living in the same mid-size city where I was born and raised sometimes makes me feel like I haven’t branched out or grown up. So sometimes, in the back of my mind, I think my new, posh life will begin once I leave my little nest.

Then this one annoying quote finds its way into my consciousness:
“Wherever you go, there you are.”

Simple and obvious, right? Yet something I miss constantly. Whatever I want to escape is usually inescapable because it’s within me. Whenever I feel down, like I want to run away, it’s not the external place— it’s the landscape inside me that needs my attention first. I know this is true, yet when I’m in the midst of it, I don’t see it. Most of us don’t.

I think about our family’s move to our current, downtown location and how much living in a walkable place has improved our quality of life. But honestly, I can find myself in the same, trapped mental state as when I lived in the middle of nowhere when I’m not tending to my internal landscape.

As I’ve sat wrestling with what to be when I grow up, I’ve continued to write content for small businesses and have continued to get new leads, moving forward but without barreling ahead recklessly. I’ve continued to open up our house to after-school kids, and our home is always full.

I started the summer trying to choose a new career, but now sitting in winter, waiting for spring, I’m finding that sometimes careers choose you. Sometimes you just wait and allow the water and sunlight to do their magic.

Sometimes, like a bud, rising up out of snow, you open your eyes to see that you are blooming now. Maybe slower than you would like. Maybe not in the specific areas anticipated, but rising up just the same.

And you find that your new, Better Life is not hinging on an event or a skill or the approval of others. It is happening right now.

“For all of a sudden, when I saw those lights, I said to myself, Ivy, this is your life, this is your real life, and you are living it. Your life is not going to start later. This is it; it is now. it’s funny how a person can be so busy that they forget this is it. This is my life.” – Lee Smith, Fair and Tender Ladies


Choosing Our Struggles

I love to read about other people’s struggles, especially if they are very different from my own and if they have overcome something unimaginable to me.  Whether it’s the personal memoir of an oppressed woman in the Middle East or wise sentiments from a man born with no limbs or a documentary about a wealthy hoarder in New York.

It doesn’t matter whether it’s dramatic, life-altering challenges, though those tend to be the ones that grab my attention, I glean just as much wisdom from writers like Brené Brown and Ann Lamott in their depictions of more common human ailments, such as shame and chemical addiction.

Back when I taught 7th grade, I was the only weirdo English teacher who chose “Life’s Biggest Challenge” as  my students’ major narrative essay topic.  While other teachers were assigning jovial topics like “What I Did Over Summer Break” in which kids could write about al the fun they had riding Big Thunder Mountain at Disney, I was “that” teacher asking 12-year-olds to think about their deepest struggles in life. And how they overcame them or how they continued to face them.  Granted, preteens these days do face incredible challenges, and there were maybe 2 or 3 kids each year who were able to articulate them and put them into any kind of big-picture perspective in a concise essay.  But for the most part, I read handfuls of narratives about overcoming skateboarding or gymnastics stunts that the students had attempted to master all of their lives.

As a teacher, I knew certain inconspicuous facts about specific kids, like who’s parents were recently divorced, who struggled with hidden disabilities such as dyslexia or who’s mom had just died of cancer.  I always assumed students would choose these glaringly-obvious challenges for their essays, but most of these kids were the ones who came to me saying they had no idea what to write about. Even when I told them their papers would be completely confidential, the majority still chose to write about sports and hobbies.

And I can understand why.  Until starting our blog, about a decade after graduating from college my twin sister and I did not choose to write or even talk about the major life challenge of having a degenerative eye condition.  I remember my sister even telling me once how she was assigned a similar challenge essay in high school and how she wrote a fictitious essay about how she used to be fat as a child and how she overcame her weight problem.  Now to understand the extremely comical part about her choosing this topic, you have to envision my sister at age 15 when she wrote this…..all 93 pounds of her at the time.  Skinny as a rail, and all genetics, no eating disorders involved.  She said that her teacher commented “Wow, Jenelle….I would never have guessed you used to struggle with your weight!”  Apparently, she got all her material for the essay from a chubby little girl she babysat.

I have no room to criticize, however, as I remember an 8th grade essay I wrote about being in the hospital at the age of 5 and how I received a special stuffed clown named Chuckles. This was, in fact, a true story, but it did not actually happen to me; my sister was the rightful owner of the green and white checkered Chuckles

So what keeps us from sharing our real stories?

I think most of the time it’s shame.

Shame-researcher, author and speaker, Brené Brown, who’s TED talk on the topic of shame went viral, describes it this way: “Shame is the intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging. It’s the fear that something we’ve done or failed to do, an ideal that we’ve not lived up to, or a goal that we’ve not accomplished makes us unworthy of connection.”

One would think that after writing extensively about vision loss on my sister and I’s blog, that I’m over any shame related to vision.  But shame sneaks up like influenza, barely a sniffle and then writhing with body aches.

Just the other day I was reading, “Bread and Wine”, by one of my favorite writers, Shauna Niequist, and I found myself having shame envy.  That’s not even a real term, but that’s the closest I can come to naming it. She was talking about the shame she has felt over food and her body and feeling hungry.  And I found myself wishing that I could write about food-related shame instead of vision challenges despite the fact that I have never once felt shame over a partaking in a decadent brownie nor over a BLT dripping with bacon grease.  But I found myself thinking irrational thoughts about how more people could relate to her shame than mine and how her struggle sounded a lot cooler than mine.

Cooler?  Really?

But that’s what deep shame continues to do, even after you’ve spent a lot of time and hard work scraping off its layers.  It makes you think that no one can relate with you.  It makes you feel shameful even about your shame.

At some point, it is necessary to choose our challenges, to really claim them as our own.  Shame tells us that giving them attention makes them grow bigger and gives them more power, but I have realized that it is in the naming that they shrink.  Like a physical wound, it is only when you give a laceration the attention it needs, leaning close enough to clean it with peroxide and wrap it in poultice, that it finally loses its sting and can heal.

“Owning our story can be hard but not nearly as difficult as spending our lives running from it.” – Brené Brown
So today I choose my struggle because it is mine.

Adaptive Skiing

Yesterday was the final day of winter.  And although I am really looking forward to sunny spring days and warm summer nights, I am going to miss all the winter activities.  I recently learned to ski despite the fact that I thought skiing was something that I would never do.  Mainly because every time I have pictured myself skiing, I envisioned heading straight into a tree or some other object/person not within my field of vision.  Although running into objects makes for some great stories and blog material, it’s not my idea of fun.

Maybe it was the Winter Olympics, or my dad telling me about a skier with RP in the Paralympics that inspired me to try cross-county skiing this year and hopefully alpine skiing next year.  I had no idea that adaptive skiing even existed, but once I started looking into it more, I learned that there are multiple organizations and foundations that support skiers with disabilities.  Although I have not yet had the opportunity to receive any special training or adaptive tools, it is something I am looking into for the future.

I’ve been living in a mountain town for over 7 years, and now I am finally starting to experience all there is to offer right outside my front door.  So I went from never having skied before, to skiing 5 straight days in a row, and loved (almost) every minute of it.  My mom and I took a lesson, which was fun because she had also never tried skiing before.  Once we figured out how to get our boots in the bindings, we were off! Sort of.  There was some falling involved, but we had a great teacher and soon found ourselves gliding along (mostly).

In terms of my vision, Nordic skiing was easier than I had anticipated.  There are not a lot of obstacles in Nordic skiing and, for me, it was pretty easy to stay on the path once I got my skis in the right grooves.  When the sun was out, and I had my polarized shades on, I found the shadows against the snow had a dark enough contrast for me to follow the path.  But when there was not enough contrast from the sun, it was often hard for me to anticipate which way the path was meandering and when there was an incline or decline.  I think this is where some adaptive skiing techniques/tools could really be helpful.  But in the meantime, my family and friends are my best guides.

Skiing with my husband was the most helpful for me because (as usual) we are so in sync and he just knows to ski ahead so I can follow his path, and he shouts an occasional “small hill coming up ahead” over his shoulder.  I’ve said it in previous posts, but there is just something about some people, like my husband, that is so seamless and easy when they assist me.  I continue to be thankful for this in my life.  And I was fascinated to learn about Danelle Umstead, a competitive alpine skier who also has RP, and recently competed in the Sochi Paralympics.  Her husband is her skiing guide, and I highly recommend checking out their inspirational story.

After a few days of skiing with my mom and husband, I was feeling somewhat prepared when my two best’ies from Seattle arrived with their children for a few days of playing in the snow.  The first day we went out, we got a bit of a late start.  We also did not anticipate how slow we would need to go with young children whom had never skied before.  We started on our ski journey around 3:45pm, and after about an hour, we realized that we were not sure how much longer we had until the path would lead us back to where we started.  And, in fact, we were not entirely sure WHICH path to take to get back to the beginning.  As we encouraged our kiddos to pick up the pace, I could feel my anxiety level rising.  Similar feeling to my post a few years ago “When Darkness Comes”.  To use an analogy my daughter would love, it’s like I am Cinderella at the ball and I know that at the stroke of “midnight” (darkness), everything will be different for me.  If the kids had not been skiing with us, I would not have been so panicked because my friends are so good at guiding me in the dark and I am used to having to adjust in darkness.  But it was the thought of not being able to help guide the children back safely in the dark that really got my heart pumping.

We finally had the brilliant idea to have the kids take their skis off so they could walk without falling, so we were able to pick up the pace a bit.   Also, I had forgotten how much light snow actually provides, and even once the darkness started to set in, I was able to follow the path better than I anticipated. But we still were not quite sure where we were going or how long it would take.  It had been at least 45 minutes since we had crossed paths with any other people, so there was no one we could ask for directions.

But we finally came across a good Samaritan named Judy who was out for an early evening ski and knew the paths very well.  She noticed that our group needed assistance.  What gave us away? Was is the whining children? Or the bewildered looks on our faces? Or perhaps it was because we were screaming “help!” at the top of our lungs.  Only kidding on that last one – we had somehow not reached utter panic.  My poor husband was at home worried sick about us, though.  It was close to 7pm by the time we got back to the car.  We laughed as we loaded the kids into the car – bemused at our unintended adventure.  And believe it or not, we woke up the next morning and went out skiing on those same trails again.

 I typically dread winter time, but this new hobby has me looking forward to next winter already.  It’s also served as a bit of an eye opener (oh yes – pun intended) that there are plenty of sports and activities I can do and all sorts of adaptations out there for people with low vision.  It’s just a matter of seeking it out and going for it.

Take Inspiration: Blind Architect on TED Talks

As we head in to the New Year, I would like to dell out some encouragement to help our readers welcome a strong and hopeful 2014.
Blind Architect, Chris Cowney, gave this incredible TED talk on designing cities with the blind in mind, and how this not only benefits the blind but also offers major advantages for the cities themselves.
My favorite take-aways from this talk are:
  • It has been said that there are two groups of people in the world: those with disabilities and those who haven’t found theirs yet.  I love this concept, as we all have something that we struggle with.  Ironically, blindness just happens to be very visible to others, but think of all the invisible disabilities.  Imagine if everyone had to walk around with their major life challenges tattooed to their foreheads for all to see.
  • Chris Downey joked that whenever he feels blue, he just goes outside and walks down the street since people are so encouraging and kind seeing him with his cane.  This is a good motivator for me, as I typically imagine people grimacing at me when I carry my cane. When I think about my interactions at airports and other public places, however, I remember how kind people can be. Chris talks about how some of his blind friends are offended by this, thinking people are pitying them, but he likes to think people are acting out of their shared humanity.
  • If architects design cities with the blind in mind, everyone benefits, not just the blind.  I think this is a really key point because I would venture to guess there are people who would frown upon designing a city with such a small percentage of the population in mind, forgetting that the types of designs that would help blind people would also make their city more pedestrian and envionmentaly friendly.
I am grateful for people like Chris, who use their talent and voice to speak on behalf of others.
As 2013 rolls into 2014, I plan to sit down and evaluate my own gifts and the ways my voice could benefit others.  Please feel free to join me. :)

Lessons in Decompression


I have never been good at letting go. Tense conversations, goodbyes, friendship changes, job transitions, moves….all keep me awake at night far longer than it seems they should.
So it wasn’t entirely surprising when my plane touched down in Seattle 2 weeks ago, and I couldn’t immediately let go of real life to enter vacation mode.
I’ve been in this quaint, picturesque Bavarian-themed village in the Cascade Mountains since the beginning of July, and I’m only just starting to decompress. Prior to leaving for this trip, there were a lot of stresses at home and I pictured this serene, oasis trip in which I just played and played with my children without worrying about my typical daily to-do lists. I had this vision of myself, unplugged and ultra-present. Continue reading