Almost Famous

This week, I had the pleasure of co-presenting at the Spring ADA Paratransit Conference with my friend and fellow blogger Keith Edgerton.  I felt instantly at ease alongside this seasoned public speaker as we shared our experiences of using public transportation with visual impairment.  Each year a transit authority from one of Washington’s Counties puts on the event.  39 out of 40 counties were represented at this conference held in my hometown of Leavenworth.  Talk about a short commute!

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Photo Description: Jenelle (left) and Keith (right) standing outside in Leavenworth with the Cascade Mountains in the background. Continue reading “Almost Famous”

Rising Strong: A Joint Effort

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Joy and Jenelle laughing and holding hands at Aliso Creek Beach in Orange County, CA.

Loyal, lovely readers, our apologies for the scarce posts in recent months.  We’ve received emails from some readers checking in on us, and we appreciate your encouragement.  You, our courageous tribe, are why we will continue to write amidst bustling schedules.  And we thank you for taking time out of your busy lives to stop by Doublevision blog.

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Joy and Jenelle’s young children smiling in front of a fountain.

We are actually writing this post together IN PERSON, as Jenelle is visiting Joy in sunny SoCal for a couple weeks. Our kids are getting lots of cousin time building sand castles and soaking in Vitamin D while we catch up and enjoy our time together.

Today we’d like to loop back to a topic that everyone LOVES to talk about (insert sarcastic undertone here). We’ve written posts on it and spoke on a podcast about it and its relationship to blindness. While it’s not something that most people deal with daily, it does have a way of Continue reading “Rising Strong: A Joint Effort”

Lost Mittens, Burnt Lunch, & A Letter to Myself

Joy and I took a little “holiday” from blogging at the end of 2016.  We were busy enjoying a family visit together in the Northwest filled with snow shoeing, aerial yoga with our girls (including Roja!), and ringing in the new year at “pretend midnight” for the kids and then official midnight for the adults.

Photo Description: Scenic winter picture of our family snow shoeing.

Image may contain: 8 people, people smiling, mountain, sky, snow, outdoor and nature

Photo Description: Aerial yoga swings hanging from the ceiling with red mats underneath.  Roja is laying on a red yoga mat in the left corner of the picture.

Fast forward to January.  The egg nog is long gone, the holiday decor packed away, and it’s back to the routines of daily life.  In many ways it feels refreshing.  A new year offers new beginnings, and yet old habits often follow us into new years. I’m choosing to share one of my on-going challenges knowing that many of us struggle with our inner critic.  I invite you to try some self-compassion exercises along with me as a step towards a healthy 2017.

This “self-compassion lesson” begins with a story followed by some self-compassion exercises.

The sun streamed brightly through the trees, illuminating the large piles of crisp white snow as I rushed out the front  door.  I chatted distractedly with Joy on my cell while grabbing the long blue sled from the front porch and tossing my son’s after school snacks and snow gear onto it before zipping off.  Joy and I finished up our conversation as I walked the 1/2 mile to Benny’s preschool.  I quickly plucked his lunch box from the sled to prepare for his famished after school snack requests, and discovered that the bag of snow gear I had packed him was no longer in the sled.  I’ll just retrace my steps and find it on the way home, I thought, and signed Benny out of school.  I knew finding a white plastic grocery bag against white snow would be challenging, but Benny is a good little helper and I figured we’d stumble on it eventually.  But soon we were home with no bag of snow gear.  My husband. who works from home most days, had just started his lunch break and offered to take the car out and look for the missing gear.

Meanwhile, I started making lunch, but was so distracted with texting friends and neighbors about the missing items, that I forgot about the sauce simmering and burnt it to a crisp.  My husband used his entire one hour lunch break searching for the items with no luck.  I felt defeated as I recalled how much money snow gear costs, especially the brand new high quality Burton mittens that just arrived from Amazon the day before.  I could feel the tight knots in my empty stomach as I scrounged around the fridge, trying to put together a new lunch, and I snapped at my husband when he asked me a question.  He retreated back to his home office, likely relieved to escape the presence of his edgy wife.  Tears started rolling down my cheek as I thought about how much I had screwed up that day.

My pity party was interrupted by my phone ringing.  It was my Uncle Mark calling.  Joy has written about our uncle in previous posts.  He calls each day from his room at the nursing home to read us the AA prayer of the day.  Though Mark’s developmental disability keeps his mind at the age of an adolescent, his intuition often exceeds his mental capabilities.

I sniffled as I picked up the phone. “Hi, Uncle Mark.  I’m kind of having a bad day.”

I proceeded to tell him about my lost items, burnt lunch, and cranky behavior..

“I’m sorry you burnt lunch.” he stated in a flat tone.

“Thanks,” More sniffles.

“I’m sorry you lost your son’s snow pants.” he continued, still mono-tone.

A few more tears rolled down my cheek as I muttered another “thanks” into the phone.

“I’m sorry you lost your son’s hat.” he offered.  Oh man, is he going to say sorry for every damn item I lost?
I wondered to myself, feeling grumpier by the second.

“I’m sorry you lost your son’s new mittens.” he added.

I was about to mutter another bland thank you when I heard him say, “But you’re still a good mom.”  Now the hot salty tears came flooding out of my eyes as I sobbed,”Thank you, Uncle Mark! I really needed to hear that right now.”

Uncle Mark’s words cut right to the heart of why I was crying.  I wasn’t shedding tears over lost stuff, or martial tension, or burnt lunch.  I was feeling inadequate as a mom, and I was beating myself up over my mistakes.  Mark’s simple affirmation caused me to remember all that I have learned about the importance of self-compassion.  I first learned this concept from Brene Brown and Kristen Neff, and was able to put it into practice at the Daring Sisters women’s retreat last summer.  For yesterday’s fiasco, I chose to write myself a self-compassion letter, which is far less complicated and hokey than it may sound.  Other times, I’ve chosen a guided meditation.  There are lots of great tools to choose from on Dr. Neff’s website. 

Below is a step by step guide to writing a self-compassion letter that I found on Berkeley’s Greater Good In Action site.

Time Required:15 minutes. Try to do this practice once per week, or at least once per month

First, identify something about yourself that makes you feel ashamed, insecure, or not good enough. It could be something related to your personality, behavior, abilities, relationships, or any other part of your life.

Once you identify something, write it down and describe how it makes you feel. Sad? Embarrassed? Angry? Try to be as honest as possible, keeping in mind that no one but you will see what you write.

The next step is to write a letter to yourself expressing compassion, understanding, and acceptance for the part of yourself that you dislike.

As you write, follow these guidelines:

  1. Imagine that there is someone who loves and accepts you unconditionally for who you are. What would that person say to you about this part of yourself?
  2. Remind yourself that everyone has things about themselves that they don’t like, and that no one is without flaws. Think about how many other people in the world are struggling with the same thing that you’re struggling with.
  3. Consider the ways in which events that have happened in your life, the family environment you grew up in, or even your genes may have contributed to this negative aspect of yourself.
  4. In a compassionate way, ask yourself whether there are things that you could do to improve or better cope with this negative aspect. Focus on how constructive changes could make you feel happier, healthier, or more fulfilled, and avoid judging yourself.
  5. After writing the letter, put it down for a little while. Then come back to it later and read it again. It may be especially helpful to read it whenever you’re feeling bad about this aspect of yourself, as a reminder to be more self-compassionate.
 Another tip I learned from Dr. Neff is to add “I love you. I love you. I love you.” at the bottom of your letter.

5 Things the Online Community Taught Us About Blindness (Happy 5th Anniversary Doublevisionblog!)

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So much has transpired in the last 5 years of blogging together.  Our perspectives have shifted dramatically.  If you look at one of our very first posts, “To Tell or Not to Tell”, about whether to disclose our vision loss in public, to more recent posts about guide dogs and canes, the shift is obvious.  But it didn’t happen overnight.  And it didn’t happen without a lot of input and support from friends we met in the online community.

2011-2012:  We’re not alone.  Between our readers, Facebook groups and fellow bloggers’ posts, we discovered a whole new “blogosphere” of people with Retinitis Pigmentosa and other conditions.  It was this connection that pushed us to keep writing, keep exploring, and keep discovering new things about ourselves and the unique world of vision loss.

2012-2013:  There’s a lot more to life than going blind.  If you look at our archives, you’ll notice this is the year we took a little hiatus.  Jenelle had her second baby, Joy started working on other writing projects, and life got busy.  We took a little break from both writing and reading vision-related blogs for awhile, realizing that there are so many more aspects to our lives than vision.  But when we picked back up and started writing consistently again, we were once again greeted with enthusiasm and encouragement.

2013-2014: The blind community is as diverse as the general population. Blindness is something that crosses all cultures, age groups, genders, and socioeconomic levels.  Consequently, the personalities, likes, dislikes, hobbies, views, etc. are extremely diverse.  This was the year we really began discovering the wide array of people in the blind blogosphere.  We have had the privilege of connecting with a multitude of interesting, yet often very different friends in the online blind community, including blind active mama friends, crafty comrades  adventurous, witty intellectualsartsy, clever New Yorkers, blind Canadian advocates, bold blind fashionistas, and let us not forget our guy-friend blogger and his amazing TEDtalk. And this just scratches the surfaces of interests, personalities and geographic locations.  IMG_3646

Even among assistive devices, people have their things; some like dogs, others canes, still others echolocation, some nothing, some braille, some hardware, some software. Under the umbrella of “blindness”, there are a select few who are in complete darkness (10 percent, like our friend and Youtube talent Joy Ross), others who have light perception, some shapes, some puzzle pieces, some just in daylight, some just at night, some large print, and even some who “drive blind“.

2014-2015:  The blind community has a strong, growing voice.  There is a growing voice in the blind community that is influencing culture.  This is the year we really started noticing an explosion of public awareness in the media: bloggers started popping up left and right (blind mamas, blind papas, blind professionals, you name it!).  These people have always existed, but it seems they have been growing in their public presence and confidence.  A major magazine, Real Simple, feature spread on blind moms with guide dogs, and reality tv producers have been seeking out blind talent.

Most of these efforts are positive and have the intention of educating the public, though this rise in media attention has created some controversy over whether people are overdoing it in regard to “inspiration”.  We in the blind community are, after all, just living our lives, and humans have a way of adapting to most anything.  It can be confusing when simple daily tasks are hailed as “amazing”.  On the other hand, there are unique challenges when it comes to sight loss, and the human capacity to overcome and move forward is, in itself, inspiring.  From our perspective, if it can help inspire others to do the same in their own lives, whatever their unique challenge happens to be, then it is noteworthy.

IMG_36472015-2016:  Shame is a common theme.  We used to think that we were the only ones who tried to hide our vision loss.  We have since discovered that this is actually a common phenomenon among people losing their eyesight.  Fortunately, amazing organizations such as the San Francisco Lighthouse for the Blind, are recognizing that this is an issue and have training, counseling and other programs available to help people get past the stigma.  “For those with changing vision, the daunting part is not usually the fear of darkness, but.the fear of admitting that you’re different.” – San Francisco Lighthouse For the Blind & Visually Impaired

 

Ask the Eye Doctor

We’ve done a lot of Q&A posts here at Double Vision Blog, but this is our first interview with an eye doctor.  I’m pleased to introduce Dr. Kierstyn Napier-Dovorany, OD, FAAO, Associate Professor, Western University of Health Sciences, College of Optometry   I didn’t just choose a random eye doctor to interview.  This is “Kier”, a dear friend going all the way back to our days at Naperville North High School. I love that I can ask her anything eye-related and she will respond with experience, research, and honesty. Continue reading “Ask the Eye Doctor”

More Thank You Notes

There’s something deeply satisfying about completing a stack of thank you notes.  So I can’t help but continue to write more.  Hope you enjoy reading them as much as I enjoy writing them!

Thank you mannequins, uh, I mean, excuse me.  I mean, I’m sorry I bumped you.  Wait.  You’re not a real person?

Bashfully,
Lady Who Was Not Just Talking to an Inanimate Object Continue reading “More Thank You Notes”

Book Review: Mobility Matters: Stepping Out in Faith

If you’ve ever wondered what the process of learning to use a cane might entail, then there is a book you should add to your personal library.  Mobility Matters: Stepping Out in Faith by Amy L. Bovaird provides a detailed account of an adventurous woman’s journey from denial to blind rehab services, including braille and cane training.  

Audiobook  Continue reading “Book Review: Mobility Matters: Stepping Out in Faith”

Beauty by Giselle

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Giselle in between her guide dog Muesli and dog Max. Both dogs are looking at each other.

I am thrilled to introduce you to Giselle, a college student from San Diego, who I met during guide dog training.  She graduated with her guide, Museli, the same day I graduated with Roja, and I have hilarious memories of our weekly trips to Sephora, Ulta and the Mack counter during our 2 weeks of training in San Rafael.

Our fab Resident Advisor., Mick, drove us to whatever stores we “needed” to go to, along with our tagalong classmate, Dale, who was basically there to provide comical entertainment.  The image of Dale and Mick spraying different colognes in Ulta while guessing the name of each scent, along with Dale unknowingly walking behind the checkout counter as if he were an employee still makes me laugh out loud. Continue reading “Beauty by Giselle”

The Things Blind People Miss

I have always been proud of the fact that, though legally blind, I can find missing items better than fully sighted people.  My husband will literally spend an hour looking for his keys, and after 5 minutes of asking me,  I have them in my hands.  A friend once lost her wallet within her large purse and spent 45 minutes looking for it.  On a whim, I asked if I could try searching through her purse for the wallet.  Within 30 seconds of me feeling around, I found her wallet.  These aren’t lone incidents either. When my kids can’t find something, I’m the one they come to for help.

Along with finding lost items, I also pride myself on the fact that not much gets past me.  I can be downstairs cleaning the floor yet I know exactly what my girls are doing upstairs.  I run an after-school program out of my house, and the other day I told one of the kids to stop waving something in another child’s face even though he was out of my line of vision.  They joke that I have secret eyes all over.
Continue reading “The Things Blind People Miss”