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.

3 Attributes You Will Quickly Develop as a Blind Mom


A friend recently gave me an article on 4 blind moms featured in “Real Simple” magazine.  I was immediately struck by the beauty and strength of each woman, and I was a bit jealous of them for having such close blind friends.  One of the women, Joy (great name!), talked about how they are each in awe of one another’s feats.  “It’s like each of us has mastered a skill or has a bravery that the others don’t.”  They all have guide dogs and are starting a national group called “Mommies With Guides”.
One of the things they discussed in the article was what they do differently as parents without sight.  This got me thinking about my own parenting, and while I do have some vision, there are definitely some skills I have had to develop as a mom with low vision in order to be a good mom.  Some of these are still works in progress, but they’re definitely the “muscles” that get the most use, and therefore the most strength.
  1.  ESP:  One of the moms in the article said that since she can’t see her kids’ expressions to know whether they’re sad, happy, angry, etc. she ends up doing a lot more talking about feelings than most parents.  I do a fair share of talking with my girls, especially right before bed.  However, any parent out there knows that kids aren’t always eager to do a lot of talking when they’re upset.  I have learned to sense into their emotions— from obvious times when they run with angry footsteps to their rooms or more subtle times when they seem quieter than usual.
  2. An honorary Ph.D in Organizational Planning and Transportation:   I probably spend at least 20 minutes a day planning and scheduling rides to various activities , appointments and functions, and my guess is this time will increase as my youngest begins entering the world of extra-curriculars in a few years.  I would say that I was born with decent planning skills (my in-laws lovingly nickname me “the family planner” for all the trips and outings I plan for our family).  But I sometimes get sloppy and very last-minute and unorganized about it.  You’d think engineering plans so often would make me a pro at it, but it sometimes just makes me tired!  This is definitely one of the areas I’m still working on, but as a VI mom, I will have plenty more opportunities for practice.
  3. A sense of humor:  Every mom, sighted or not, needs a little laughter.  But for a blind mom, it’s absolutely essential to not take ourselves too seriously and to have fun with the life we’ve chosen.  My almost-8-year-old’s new favorite thing is to ask me to tell her yet another one of my embarrassing stories while she belly laughs at her entertaining mom.  I find it pretty therapeutic myself.  She has certain favorites that she has me repeat like folklore.  Such as when the hostess at the Chinese food place near our house began steering me around the restaurant like a race car.  Or when I knocked over a glass getting up to answer the door and screamed at the top of my lungs but then greeted the person at the door as if no obvious loud raucous had just taken place.  Yup, my girls and I do a lot of laughing.
Yesterday morning I actually ended up getting on a conference call with “Mommies With Guides” (as part of their monthly national meetingB), and I was laughing because as 3 out of the 4 founding members introduced themselves on the call, I felt like I was getting to chat with these celebrity moms who I was in awe of when I read the magazine article.  Since there were a number of moms on the call, I was at first disappointed that I didn’t get to really interact as much as I had envisioned (though they each offered to talk one-on-one with anyone who wanted to on another day).  But as I listened to them encourage one particular mom who clearly needed reassurance, I was really moved by the ability of fellow moms to empower one another.
And I noticed yet another thing blind moms can develop when they put themselves out there:  an additional support system.  I am really excited to watch this group grow.

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

Liebster Award

liebsterawardIf there’s one thing writers really need, it’s community with other artists. I have this amazing friend, Emily, who shares my love of writing. We belong to the same writer’s group and have fun drinking tea and/or wine over topics involving creativity, editing, publishing, and the like. She writes a hilarious blog and recently nominated me for a Liebster award. Thanks Emily, for your encouragement and for being someone with whom I can share writing joys and frustrations and engage in super-nerdy conversations.

As part of my acceptance of the Liebster, I had to answer the following 11 questions from Emily: Continue reading