When Will I Get Over This?

A familiar sensation of tightness gripped my throat as my heart pounded in my chest and the knots in my solar-plexus twisted into familiar shapes. I sheepishly gazed downward, tears streaming down my face, mumbling to Paloma, “I should have this figured out by now. Helping people improve their mental health is what I do for a living. Why does this keep coming up for me?” Paloma’s tone was soft with compassion as she gently reminded me that my experiences of living in a body that does not fit society’s standards of “normal” are not just in the past, they continue each day.

I trusted her words, knowing that she is an experienced therapist with a multitude of academic training; possessing a deep understanding of what it means to heal from identity-related grief and trauma. I understood all of this on a cognitive level, but my body felt flooded with shame at having this sudden temporary upsurge of grief (STUG). The term “STUG” was coined by Dr. Therese Rando over 3 decades ago to describe intense, unexpected surges in emotions for those who have experienced past grief or loss. While Dr. Rando used this term in the framework of loss of a loved one, I am taking the liberty of applying it to my grief related to identity/disability. Continue reading “When Will I Get Over This?”

Reflections

It’s been almost a full year since our last blog post. When the annual renewal fee arrived recently from WordPress, Joy and I discussed whether or not to pay the fee to keep our blog going. We wondered if this blog is still relevant, both for others and ourselves.

And then last week we received a short email that read. “Your blog has been a lifesaver for me as a Mom of a little one struggling with different vision issues. Please keep blogging if you have the chance”

And this motivated us to reflect on our blog.  Continue reading “Reflections”

Better Place: A Year With Roja

Screen Shot 2016-08-08 at 8.24.53 AM

One year ago today, Roja and I graduated as a team from Guide Dogs for the Blind in San Rafael, CA, and life hasn’t been the same since. In addition to getting Roja, this past year has been full of both amazing and difficult changes. From moving across the country and being apart from dear family and friends to growing in confidence as a mom, writer and teacher, Roja has been a constant companion who shows unconditional love (and licks!). Continue reading “Better Place: A Year With Roja”

Canadian Accessible Radio , Eh?

Pasted Graphic140f8d9

Last week, following the popular “8 Things” post we were contacted by the amazing folks at AMI Radio, based in Toronto, for a 10-minute LIVE chat! on Retinitis Pigmentosa.  With 5 million listeners, these guys don’t mess around!  Clearly, the hosts had done their research on our site, resulting in some fantastic questions! Joy did the interview, but they still found a way to include a few sound bytes from Jenelle’s “Thank you notes” Enjoy!

Why We Hide

BAM! Blindness Awareness Month is coming to a close, and we have a hot topic to discuss.  

Joy and I used to think we were the only ones who tried to keep our vision loss a secret growing up and even into adulthood.  Then we started this blog, and we heard from so many people with similar stories of trying to hide the fact that they couldn’t see.  And then we read Not Fade Away and Now I See You, and discovered still more stories of cover-ups, secrecy, and shame over vision loss.  

While it was comforting to learn that we were not alone in choosing to hide our vision loss, it also made us wonder…How many people have tried to hide their low vision at some point in their lives? And why?

Just to be clear, we’re not condoning hiding vision loss, nor are we condemning it.  We’re exploring the reasons behind it.   Continue reading “Why We Hide”

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”

DoubleVisionBlog Fight Song

View and share “DoubleVisionBlog Fight Song” Video on Facebook

Hi DoubleVisionBlog friends! I’ve been secretly working on this video for the past month as a surprise for Jenelle. Happy Blindness Awareness Month!

——

In honor of Blindness Awareness month this October, Joy shares her journey of shame, vulnerability and courage. With both humor and insight, Joy and her twin sister, Jenelle, share their stories of life with RP at doublevisionblog.com. Continue reading “DoubleVisionBlog Fight Song”

Meet Roja: Day 1 of Training at GDB

IMG_8346-2You know how some days can just fly by, to the point where you can’t even figure out what you did? And then there are those other days, those 24-hour periods that are so thick with events that it seems several months have passed overnight. I’ve experienced this during a weekend of silence at a Trappist monastery, and on several short-term mission trips over the years, and today, at Guide Dogs for the Blind in San Rafael, CA, during my first day of training. Continue reading “Meet Roja: Day 1 of Training at GDB”

What it’s Like Being an Identical Twin: The Good, the Bad and the RP

Growing up, we were the best of friends.

Joy: Except for that time, in utero, when she sat on my head for nine months, and then made me wait four laborious minutes while she made her grand entrance into the world.

Jenelle: Or that time when we were 18 months old and she sunk her teeth into my arm after I stole her stuffed bunny.

Joy: Or that time when we were eight, and she poured a glass of milk over my head at the dinner table.

Jenelle: Or that time when we were nine, and she signed my dad’s Father’s Day card, “Love, Joy. p.s. not stinky Jenelle.”

Joy: Or all those times as teenagers when she chased me around the house trying to whip me with a wet bath towel, while I ran away, chanting “Violent lady! Violent lady!” Continue reading “What it’s Like Being an Identical Twin: The Good, the Bad and the RP”