“Sitting Pretty” – Recovery of My Backbone

I’m finally on summer break, after a long school year during an even longer year, and I return to writing as one returns to an old, neglected friendship. A little timid and sheepish with guilt over the time spent away mingled with the eagerness that only hope and steadfast trust can produce.

I’m playing hooky from the virtual yoga teacher training Jenelle and I are taking together to spend a little time with doublevisionblog this morning because I feel like I have things to say. My thoughts and words feel like they are awakening from a COVID coma, as I strain hard to strengthen their atrophied state, stretching and breathing through the discomfort.

But I’m not alone. My physical therapists come in the form of books, other writer’s stories reminding me of my own, and I read them with the voraciousness of someone who hasn’t eaten in many months. Yes, I’ve read books over the past year for book club and lots of words for work, but there’s something other-worldly that occurs when you get fully lost in a book, and time itself bends , unaware whether 8 or 18 hours have passed as the words pour over you in waves of recognition. In the first 2 weeks of my summer break, my family and I have travelled to 4 states, and I’ve finished 4 books, one for each state, each one aiding in the recovery of a different part of myself.

The first book I finished, “Sitting Pretty: The view From My Ordinary, Resilient Disabled Body” aided me in reclamation of my backbone.

This memoir is a NYT bestseller written by a disability advocate living with paralysis. The book was actually recommended by a good friend from the “Daring Sisters” retreats Jenelle and I have attended and is written by her cousin, Rebecca Taussig. It is a collection of essays about her experiences growing up with a disability and the complications of kindness and charity, intimacy and ableism. If these sound like heavy, somewhat-depressing topics that aren’t exactly light summer reading, that is half true. As I read Rebecca’s words, I grappled alongside her over the complexities of living in a body “that has been sent to the margins”, as she writes in her dedication. And yet her coming-of-age stories with references to 80s and 90s teen girl icons like Christy Turlington and teen magazines weave in a lightness that had me nodding, smiling and chuckling to myself at times.

Continue reading ““Sitting Pretty” – Recovery of My Backbone”

Blind Motherhood

As a mother, I am guilty of comparing myself to other mothers, and sometimes judgement follows.  Sometimes it is judgement towards myself (Why can’t I be more patient with my kids like that other mother at the park?), and sometimes my judgement is directed towards another mom (Wow, she sure lets her kids run the show!) But when I’m in a good healthy state of mind, I focus on learning from the mothers around me.  I observe their empathetic language and attempt to use that same tone when my child is having a meltdown rather than fueling the tantrum with my own frustration.  I observe how they put away their cell phones, and get down in the sand to build a sand castle with their child at the beach, and I feel encouraged to fully engage with my own children.

Most recently, I’ve been learning some amazing lessons about motherhood from a fellow blogger, Holly Bonner, author of “Blind Motherhood”.  I’ve gleaned so much from this honest, witty, unstoppable mama, and knew instantly that our readers would want to meet her, too.  If you haven’t met before, I’m pleased to introduce you to Holly Bonner.

Blind Motherhood by Holly Bonner

Welcome to Blindmotherhood.com! I’m Holly Bonner, a 36 year old, wife, mother and social worker! After completing chemotherapy for breast cancer in 2012, I became legally blind from a neurological condition. Thrust into a much darker world, I went from the role of social work practitioner to the part of disabled client in need of services. With months of training in technology, mobility and ADL (adult daily living) skills; I finally began to feel like I could confidently rejoin the land of the living with my trusty white cane by my side. Then, what doctors had said was impossible happened, I got pregnant! Doctors….LOL! What do they know, right? Continue reading “Blind Motherhood”

Here We Go Marching: Guest Post by Amy Bovaird

Last week, I reviewed Mobility Matters by Amy Bovaird.  This week, I am pleased to introduce a guest post by Ms. Bovaird, in which she takes a trip down memory lane to describe how night blindness led her into a very unique situation.  

With a quick wave to my housemate, I stepped out of the car. Early commuters sat on the bench under the flickering streetlights with the transit map behind them. Someone pointed and the bus lumbered into view. They fell into line just as the door opened. Hoisting my teaching bag over my shoulder, I showed the driver my pass and took a seat. Ingram Park Mall became smaller and disappeared altogether as the bus turned toward Loop 410. I settled in for the ride. My stop was last—Lackland Air Force Base. Continue reading “Here We Go Marching: Guest Post by Amy Bovaird”

Book Review: For The Benefit of Those Who See

It was a bleak Seattle winter morning several years ago, and I shivered as I climbed into the yellow taxi cab.  I was dreading my appointment at the WA Department of Services for the Blind (DSB) for many reasons, but I had finally decided to see what kind of services might be helpful to me.  They had sent me a voucher for the taxi ride, so that transportation to DSB would be direct and free.

I handed the voucher to the cab driver, and noticed him eyeing me suspiciously in the rear view mirror.  I glanced down at the time on my phone to make sure I would be to my appointment on time.  When I looked back up, I saw that he was once again glancing at me in the rear view mirror.

I instructed myself to stop being paranoid, and focused on checking Facebook updates on my phone for the remainder of the ride.  As the driver pulled into the DSB parking lot, he asked in a thick Indian accent, “So, are you blind?”

I wasn’t expecting his question, so I paused briefly before saying, “Um…yes, I have a rare eye disease that is causing me to lose my sight.”

He did not say anything back to me, but shook his head from side to side, and made a “tisk, tisk tisk” sound, like he was tapping his tongue on the roof of his mouth.  I instantly felt my face flush with embarrassment.  I wasn’t sure if he was pitying me or shaming me.  I was relieved to step out of the taxi and out of the driver’s seemingly judgmental presence.  I didn’t give the incident further thought until recently when I read For the Benefit of Those Who See: Dispatches from the World of the Blind. Continue reading “Book Review: For The Benefit of Those Who See”

Will the Real Blind Person Look at Me? (guest post)

I met Amy via an online Retinitis Pigmentosa support group, and we instantly connected.  Reading this post, I think you’ll see why!  She writes an awesome blog and has a memoir that I’m looking forward to reading.  This is one of my favorite posts because it discusses the spectrum of blindness and how many people with vision loss do not appear so.

 

By Amy L. Bovaird

Real-Blind-Person-1024x1024Look at the picture. Who would you guess the blind one is?

You might think it’s the second photo because there is a little part of a cane sticking up. The truth is … each one of us in the photo is blind.

Blindness can’t be measured on a set of scales with a needle, one pointing to BLIND and the other SIGHTED. Yet, it’s often believed that it’s like that. Either you can see or you can’t. So when onlookers see an individual using a white cane, many times the thought that accompanies it is, “that person can’t see anything.”

But then the same blind person looks at a watch, checks messages on a cell phone, looks both ways when crossing the street, makes eye contact with the onlooker, orders off a table menu, walks around a number of barriers while dragging the cane behind, or simply smiles at him or herself in a mirror.

You can see! You’re faking it. You just want attention. You must want a free bus pass. You’re playing tricks. Snea-ky!  Hey, look this way. And the most famous response is … But you don’t LOOK blind!

People have often voiced these thoughts aloud to me – much later, of course when they can laugh at their misconceptions. Sometimes strangers even voice these thoughts out loud. While it might seem strange, some vision-impaired people may unconsciously follow these same fallacies. I don’t look blind. AM I faking it? Are people going to think I am? I struggled with it certainly. That’s one reason it is so hard to pick up a cane and use it.

Those who are not familiar with blindness often have a certain idea in their minds of what a blind person looks like. When I ask them what that is, their response might be, “Someone with thick glasses.”  The answers vary; sometimes silence follows.

The truth is, you can’t tell if someone is blind by looking.

I’ve had people try to “catch” me by snapping their fingers quickly to see if I notice the movement. It’s equivalent to “Look at me! Gotcha!”

I wonder why people want to catch us. What’s in it for them?

When I trained in Orientation and Mobility, I learned that “blindness” encompasses a whole continuum of varying degrees of sight to no sight. A lot of people are visually-impaired and no one even knows their struggle because they have enough vision to get around without a cane or a guide dog. But the struggle is real.

Yes, some people can make eye contact. Some can’t.

Some can look you straight in the eye one moment then turn around and spill a large glass of water the next. There’s a gap in their peripheral, or side, vision. Some can see where you’re standing, but not your hands. So you go to shake a hand and the person stands there unaware. “What a snob,” the thought is. Another gap.

In Erie, Pennsylvania, where I live, there are about 290,000 citizens. 15 % of those people are legally blind. That means there are about 43,500 people who cannot see what a typical person should be able to see. That’s a lot of people!

I never minded people thinking I was clumsy or air-headed. It was an easy blame. It was much harder to admit I couldn’t see. Maybe you know someone who is having some struggles. Maybe it’s his or her vision. Be kind. And if you see someone with a cane, don’t “test” them. Don’t “wonder.” It’s hard to pick up a cane, believe me.  If I wanted attention or a free bus pass, I could solve that in other ways.

Today’s truth: blindness is a continuum with a large span between legally blind and completely blind. There is no one look to being blind. – you can tweet this.

Do you know anyone who is visually-impaired or blind? If you could ask them one question about their vision, what would it be?

Amy3-4Bio

Amy Bovaird is an educator, an inspirational speaker and author of the bestselling memoir, Mobility Matters: Stepping Out in Faith. Although Amy suffers from a dual —progressive vision and hearing loss—she continues to enjoy running, hiking and traveling. She also supports local and national animal rescue organizations. Amy blogs about international travel and the challenges she faces as she loses more vision and hearing. But more importantly, she shares the lessons God reveals to her through her difficulties. You can read about her experiences at http://amybovaird.com
Other ways to connect with Amy:

Facebook page

Author Facebook page

Amazon kindle, paperback and Large Print

Signed copy of book

Audio sample (book coming soon!)

Word Choice

BAM! Not only is October Blindness Awareness Month, but it is also Disability Awareness Month.  Below is a post written by Susan, author of Adventures in Low Vision, who kindly agreed to let us share this brilliant post on our blog this month.  

I was playing with my cat as a kid still in single digits on the kitchen floor. Twenty minutes passed. He decided he wanted to play elsewhere. The orange tabby was not quite fast enough. I scooped him up, looked at his face and called him a silly bastard.

Mom heard me. She was quick to admonish me by asking, “Do you know what that means?” I bet my ears turned red. My embarrassment grew when, as parents do, she gave the word’s definition. I stopped calling the cat a bastard.

Words have meaning. Handicapped. Crippled. The R word. Blind. Visually impaired. A person with a disability. Where do words and phrases like these come from?  Check out the etymology of handicapped and see if you still want to refer to people with disabilities as handicapped. Continue reading “Word Choice”

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”. Continue reading “Book Review: “Now I See You””

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.

[ted id=1863]

My favorite take-aways from this talk are:

Continue reading “Take Inspiration: Blind Architect on TED Talks”

Saying Goodbye to My Grandma Jean the Queen

The call came at 3am Wednesday. Grandma is dying. She probably won’t make it through the night. If you want to say your final goodbye, you should come.

The lights at grandma’s house were dim when we arrived, and the air was heavy. Short, labored breaths rattled out of her lungs, sounding like a child with croup. She lay tucked under blankets in a hospital bed in the middle of her living room; my cousin leaning over her, inserting morphine tablets under her tongue to keep her comfortable.

Being on hospice for the past week, the call had not been entirely surprising, though she had been so alert and responsive the prior few days that we had thought it might be weeks until the end.  But here we were, in the middle of the night, beginning our final farewells.  Some family members sat perched on the queen-sized bed near her hospital bed, while others lingered on the couch in the adjoining family room, taking turns leaning over her and whispering words of love and gratitude. Continue reading “Saying Goodbye to My Grandma Jean the Queen”

St. Lucy Day

stlucyToday is St. Lucy Day. Great, you’re thinking. What does that even have to do with anything? Well, there’s a definite link to vision here.

My husband and I always wanted to have a daughter named “Lucy”, even back when we were 18 and dating, we talked about this name, inspired by a song by the band, Over the Rhine, the adventurous character in the Narnia series, The Beatles’ song, and its meaning: “light”.

It wasn’t until we actually ended up having a little girl named Lucy that we discovered she is the patron saint of eye diseases. While St. Lucy Day is celebrated most in Sweden and Norway, it is also observed in many other European countries. It is often celebrated with women carrying sweets and lights, often with a procession led by one girl wearing a headpiece with candles to “light the way” as St. Lucia once did.

My 6-year-old Lucy is a saint to me. Even on our first outing alone at a movie when she was just 3, she instinctively knew to grab my hand and lead me into the dark theater, her tiny hand clasping mine tightly even though her young mind probably didn’t eve comprehend why she had to help me. Whether it’s helping me match socks together, find crumbs that have fallen on the floor, or leading me through the dark, she is my little daily saint.

It’s interesting how un-phased yet protective she is in regard to my vision loss.

The other day as I was walking with the girls downtown, Lucy and I were talking about the possibility of getiting a guide dog someday. When I told her it might be awhile, she replied, “That’s okay mom, I can be your guide dog until then… Ruff Ruff!”

Ben’s uncle, who is a Catholic priest in Northeastern Ohio, wrote me a very endearing letter after he suffered from an eye illness that resulted in double vision for a few weeks. The time he spent in prayer and contemplation as he struggled through his illness brought Lucy and i to mind, so he wrote some of his insights to both of us. Here is an excerpt from his letter:

“I suppose I never gave this any consideration before, but I thought how significant it had to be for you, Lucy, to be so named and to have your mother and aunt with an eye ailment. Lucy, you will come to know that Lucy comes from the Latin word “lux, luce” which means light. I’ve also come to learn how much light refracts in our eyes so that we can see as we do. In our Christian faith, Lucy, you will learn that Jesus is the Light of the world for us. He is the true light that will take away all darkness in our lives. As the prayer card indicates, we share in the Light of faith that is Jesus Christ because of our baptism and we are to let that light burn brightly in our lives. St. Lucy is a patron saint for you, but also keep in mind that the name has much association with Jesus who is the Light.”

This letter is a tangible reminder of God’s goodness and of all the saints in my life. The dictionary definition of saint is “A person acknowledged as holy or virtuous”. I have numerous saints in my life– people who make tough days easier and sweet days even sweeter.

I have a good friend, for example, who picks up odds and ends for me at Costco, generous in her time even as she totes around her 3–year-old while trying to get her own list of items in a crowded store. Whether it’s surprising me with a gift basket on a tough day or running an extra errand…. she adds me to her list time and time again, and I’m not sure if she’ll ever know how much she blesses me despite my feeble attempts to thank her.

And another friend drives out of her way every single Sunday to pick the girls and I up for church since my husband leaves very early. And this is no small favor– she has to get her own kids ready, load extra car seats and listen to a car full of children bark orders about adjusting the volume on the DVD player….all while driving on the highway next to some terrible Sunday drivers. It’s truly a miracle that we make it to service on time (usually!) It’s also one of those things that I didn’t realize was a relief until it was offered. Being able to worship with my community each week without having to make numerous phone calls in hopes of finding a ride relieves so much stress and anxiety. I think back to how many Sundays I used to miss at our old church, and this is not to say that there were not generous people who occasionally drove us. I would never expect anyone to drive 35 minutes out of their way on a weekly basis, but the fact that there’s a saint in my life who does so without a second thought or even a hint of irritation is a gift.

Saints add that bit of warmth to our lives, often when we don’t even realize that we’re cold. They add warmth to our homes….sometimes even literally. My mother-in-law recently spent 8 hours sealing our old windows shut for the winter. She gave up an entire day so that her kids and grandkids can have a toasty winter.

Whether its family or friends, we all have saints in our lives, and whether we notice them, they are blessing us often. I am deeply grateful for my favorite little St. Lucy and the way she sparks light into my days.