Feeling Connected in the Disability World

I sit here in my office in Los Angeles, connected as if by magic to hundreds of people who share many of my same experiences, and who wrestle with living as fully and wholly as we are able.

Twenty years ago, when my infant daughter was diagnosed with a severe form of epilepsy and possible developmental disabilities, the internet as we know it today was in its infancy, and I had no computer. I was sent home from the hospital with an admonition from our new doctor not to read anything about infantile spasms because it’s too depressing. Suffice it to say that I pored over any medical papers or books that I could find in bookstores and the library and learned as much as I could about this new world we would be navigating.

What I couldn’t find at the library or the bookstore, or even in the sad resource groups that I attended at the hospital, was emotional support. About a year into what would be a series of crises, hospitalizations and the growing awareness of what would be an entirely different life than the one I had expected, I subscribed to a snail mail monthly periodical that had supportive words, affirmations and prayers on its tiny pages, along with photos of sunsets and sunrises and daisies. However clichéd, that little booklet often sustained me in my darkest hours, particularly when I began to call the 24-hour prayer hotline if I was feeling despair. Even though I am not religious and subscribe to no formal religion, I crouched down in the dark, the phone to my ear and whispered into the kind ear of someone somewhere in the country my immediate troubles. That person would, in turn, calmly voice her support and read aloud to me words of wholeness and health and gratitude. It was everything.

While I agree one can become too “plugged in,” the internet’s power to connect those of us in the disability world has been a profound and positive change.

Today, while we hear much grumbling about the internet and how it drives isolation and non-engagement, how it poisons our children’s minds and disrupts human connectivity, I have to say that while I agree one can become too “plugged in,” the internet’s power to connect those of us in the disability world has been a profound and positive change. Parents and caregivers of the disabled or the ill can find almost immediate support in blogs and Facebook groups and threads of websites for specific diseases and conditions. While sometimes overwhelming, opportunities for connection and community abound. I found Gratefulness.org through a woman with whom I began emailing shortly after I started my own blog over eight years ago. My friend Karen had recently lost her twelve year old daughter to a vicious cancer, yet she reached out to me as I wrestled with my own grief and loss and confusion and told me about the site. I signed up and began receiving the daily dose of gratitude, words each morning that have inspired not only my writing but have also precipitated self-reflection and encouraged me to look without even as I go deeper within.

I realize with wonder how things have come full-circle today, two decades after I reached out in the dark for comfort. I sit here in my office in Los Angeles, connected as if by magic to hundreds of people who share many of my same experiences, and who wrestle with living as fully and wholly as we are able. I look forward to this new engagement and am grateful for the opportunity to join you here at Gratefulness.org and expand this community.

Elizabeth Aquino is a writer living in Los Angeles with her three children. Her writing has been published in several literary anthologies, the magazine Spirituality and Health, The Los Angeles Times and several online sites, including Krista Tippett’s acclaimed OnBeing website. An excerpt from her memoir, Hope for a Sea Change was published by Shebooks last year and is available for download on Amazon. Her blog, a moon, worn as if it had been a shell is a site where parenting, disability, poetry and politics intersect. When she isn’t writing or taking care of her three teenagers, she runs a monthly literary and food salon called Books & Bakes. She also likes to bake cakes and remember her former life as a pastry chef.

Blog: www.elizabethaquino.blogspot.com

Ebook: Hope for a Sea Change