The day after my last post was published, my dad arrived in St. Paul, bringing with him Tactile Fingerspelling, a way to communicate with folks who are both blind and deaf. Because I still cannot see and because my sensitivity to sound is now so severe that I cannot talk or tolerate the sound of other people’s voices, even in a whisper, it was essential to find an effective way to communicate. Tactile Fingerspelling involves executing signs directly on a recipient’s hand, including all five fingers and the palm. It was easy to learn, since I only had to memorize 26 signs, one for each letter of the alphabet.
The downside of this simplicity is that everything has to be spelled out, which can be tedious for both the signer and the recipient, especially when one of them has ME/CFS. It takes a lot of concentration (and energy) for me to follow the signs, and I find I frequently lose track during long words and long sentences. I have even, on occasion, been so mentally or physically exhausted that I could no longer comprehend the signs at all, leaving me unable to receive information for a time. All in all, though, the “hand language,” as I call it, has made a very difficult situation a little easier, and it sure beats having words spelled out, letter by letter, into my palm.
Although Mike and my dad are limited to fingerspelling in order to communicate with me, I am able to communicate back in several ways. The most important of these is writing, which allows me to express complex thoughts and to ask questions of my companion that can be answered with a simple “yes” or “no” (one tap on the arm for yes, two for no). Being able to write also allows me to continue to use my fax-based celery email to communicate (one way, of course) with my family during this difficult time. (It was through celery that I sent this post—handwritten—for my incredible mom to type up and publish.) Besides writing and fingerspelling, I employ American Sign Language (what very little I can remember), those universal signs we are all familiar with, like “thumbs up” and “okay” and the age-old technique of exaggeratedly mouthing words in hopes that others can interpret them.
It is not easy for me to get information these days, but from what little I do get, I believe that there are several versions of Tactile Fingerspelling out there. The one I use is here on You Tube. My hope is that I will not have to use it much longer, that whatever is happening to my eyes and ears will reverse itself, and that listening and talking will be part of my life again soon.