Locked-In but Connected

by Rick Raker on Thu, 2014-08-21 10:49

Today, a Facebook friend, someone I have physically never met, posted a video of her taking the ALS Ice Bucket Challenge. She dedicated the cold plunge to me and her mother, who had struggled with the disease. Watching the video brought a smile to my face and a surge to my heart. I felt the ice water flowing over me, but it wasn't cold, it wasn't uncomfortable — it felt good. I felt alive. I felt connected to this friend, to this person that I have never met, but that took the time out of her busy life to do this for me and for the other souls living with ALS. Thank you, Karen Klaus.

Rick Raker

This experience, viewed through the screen of my laptop, made me realize that even though I cannot travel freely from my hospital bed, in my small but comfortable room, I can still connect with the world. I am lucky to be alive during this time, the 21st century, with computers, Internet, social media, email, technology — sitting here, with just my computer, headset and speech recognition software (Dragon), there is so much I can do. There are countless ways for me to connect with others — to learn, to share, to feel alive and participate in society. It really is amazing.

Two weeks ago, another Facebook friend, Shy Tuna, and his brother stopped by my apartment to visit. Again, we had never met. But, Shy suffers from ALS and he was here on vacation, so we arranged for a quick visit. It was wonderful to meet — to make the personal, physical connection, with someone I had only known through my computer screen. It made the fact that we can truly connect with people through the Internet come alive. It was a great visit. We both agreed that there is a special empathic bond between people that have ALS, or other tragic diseases ... 21st-century technology is just a tool to facilitate the bond, the connection. It overwhelms me to think about all of the people who have reached out, who have given their words, thoughts, prayers and precious time to make my day brighter. Thank you, Shy Tuna, for helping me realize that fact.

Most of you know that I have written several books and published them on Amazon.com. There's another wonderful example of how 21st-century technology has allowed me to connect with the world, to be productive, and to make some limited contributions to the human experience. It completely thrills me to think that someone I've never met is able to read and enjoy the story that I have written.

What's even more interesting, is that I have met another aspiring author, Karen Watson, living far away in Montana through the online Gotham Writers Workshop — and we have started to collaborate on a novel together. We're both very interested in the Native American experience, so when Karen suggested we try to write a book about the tragedy of the U.S. government sponsored Indian Boarding Schools, I was ready and willing. We do all of our writing collaboration through email. It's a long process, but I believe we will have a wonderful book to share when it is completed.

Here, I communicate with all of you through this blog and through Facebook. Just how amazing, fantastic, wonderful this really is ... It's hard to believe. It's easy to accept and just move on — take this gift of technology for granted. You might do so, because you can stand up and walk out the door. You can still go outside and feel the sunshine, smell the green grass. You can walk up to a stranger, say hello and shake hands, or even give a good friend a great big hug – please do these things. Make full use of your physicality, make full use of the technology available to us — be grateful for these things.

The blog was posted originally on Aug. 19, 2014.

About the Author

My name is Richard K. Raker, and I am 54 years old. I have lived in Honolulu, Hawaii, with my wife and son for 26 years. I have ALS, a terminal illness diagnosed in 2006. Prior to 2006, I worked as an English as a Second Language teacher, and then as a computer trainer for a major health care organization. Very soon after my diagnosis and a quick disease progression, I was totally bedridden, relying on a ventilator to breathe. I no longer could work, so I spent most of my time reading and watching TV and movies. And then one day, I discovered the joy of writing.

First, I struggled through a memoir about the first 25 years of my life, telling the story of the events leading up to my decision to move to Japan. It felt good to write. Writing takes me away from my everyday troubles and gives me a creative voice that I never knew I had. The memoir, A Remarkable Life, Lived by an Ordinary Person, has been self-published using Createspace.com and is available on Amazon.com. After that, I realized that I had a few more stories that I needed to write. I enjoy writing. The two or three hours a day that I spend working on my stories is very therapeutic. I write selfishly. It is fun and gives me a much-needed purpose in life, but I do hope that you will enjoy reading what I have written. Thank you all for your love and support. Be sure to visit my blog called A View from Rick's WindowWeb page, DVD reviews and Facebook page.

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