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.
We started this blog in 2011 as a way to begin sharing our experiences living with vision loss. At that time, we had rarely spoken openly about these lived experiences, not even with each other. Our blog became a communication tool to explore all the intense feelings and stories that had kept us silent. Blogging served as a safe space for us to explain to family and friends how and why our blindness resulted in shame.
We were greeted with enthusiasm by our eternally supportive parents, siblings, aunts, uncles, and close friends. And we also received comments and emails from strangers – people who were either struggling with blindness themselves, or had loved ones with diseases such as Retinitis Pigmentosa (RP). Given that diseases such as RP are rare, it made sense that people wanted to connect with others who share this experience of deteriorating vision.
As we’ve shifted over the last 9 years, we’ve noticed our readership has also shifted. Our earliest posts were often raw – sharing painful memories from childhood, grieving the loss of freedoms such as driving, and digging into the on-going angst of searching for a cure.
As we continued to process shame and how it relates to being disabled, we often found ourselves at different places in our journeys. Sometimes that was really exciting, and sometimes it was extremely difficult. A huge turning point occurred when Joy chose to get a guide dog named Roja. From this point, our blog evolved into more advocacy and education. We began connecting with other bloggers, and collaborated with Becky Andrews about retreats for blind women. We’ve delighted over the last 4 years as our circle of blind friends has grown exponentially. The gratitude we continue to feel for these lasting connections is immense.
We’ve reflected at different points in our blog writing – what is the point of this blog? Is it advocacy/education? Should we be taking a stronger role as leaders within disability justice movements? Who, apart from our mother, is our main audience? We never reached any brilliant or decisive conclusions to these questions.
At times, we’ve been highly motivated to write new posts, frequently emailing and texting each other new blog post ideas late at night. Eagerly asking each other for feedback on our latest posts, and collaborating on what to do next. And then there’s been several really dry spells. Life filled up as our babies/toddlers grew, and Joy began working full-time while homeschooling her daughters. When my youngest was 4 years old, I returned to school to pursue a master’s degree. And while the desire to blog still popped up here and there, we really put it on the back burner.
The few posts we managed to write were largely thanks to Joy, whose love for writing never ceases. Her pestering was insistent at times, “Jen, can you please post something new?!” My response was often, “I don’t want to write something just to write something. And I just don’t feel like I have time and space to devote to doublevisionblog right now”.
When Joy sent me that brief email from a reader requesting us to write more, I had just completed my masters program the previous week, and I realized I do have time to write again. But again, the questions of what is the purpose of this blog lingered in my mind.
I decided to read the last couple posts from Joy to see where we even left off with our blog. Oh – not knowing. And that’s when it occurred to me that it’s okay to not know exactly what this blog is. And I realized I do know what this blog isn’t. This blog is not the witty laugh out loud mommy blog with millions of followers, it’s not the beautiful artsy blog with breathtaking photography, it’s not the premiere advocacy blog for blind people to find abundant resources. It’s not a riveting disability justice blog changing public policy. It’s not a “misery loves company” place for people to seek and find pity. It’s not a cheesy inspirational blog seeking praise and admiration.
Doublevisionblog is simply us. Twin sisters sharing our unique and often overlapping experiences of going blind in a world that highly values sight. We don’t have all the answers. We are learning just like the rest of humankind. The way we experience life is often different because blindness is rare. But our experiences of grief, shame, connection, love, fear, anxiety, triumph, and gratitude are universal.
As we continue to struggle, thrive, fail, succeed, repeat – we will continue share this journey with readers at doublevisionblog.