Hallelujah

My U.K. Zoom group was a revelation! Our group has grown; now there are six of us who have FND and a significant speech defect. Consequently, Stamma, the British sponsor of our support group, is bringing in experts on FND for future sessions. I am extremely lucky to have been accepted into this group—the U.K. is miles ahead of Canada when it comes to the treatment of FND.

I almost missed the session. Twenty minutes before it was to begin, the power here went out. I was freaking out when, suddenly, it kicked back in again. It was out less than five minutes, and everything rebooted just in time for me to make the start of the session.

And ….

Not only have I secured a coach, but she is an angel! God must love me. Michelle and I are going to meet once a week for half an hour starting on Monday, but we had a session yesterday to meet each other. She is a dear and a very generous soul. Imagine! This woman has welcomed me into her life to help me—and I’m a stranger!

She got me to, without hesitation, do something I’ve never ever wanted to do: I joined Facebook so that I can link up to the deaf community and follow/friend people she recommends. And she’s put me onto Dr. Bill Vicars. He is a deaf person who has developed an ASL course that is going to become a second learning source for me to study. And finally, Cathy and I have hit on a format for our signing sessions together. We’re going to write a script together that we learn in sign and practice in our session, reversing roles, and we’re each going to bring five new signs to every session to teach each other.

I believe the expression is, “pursuing with passion.”

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Fun fact: The football huddle used today was invented by Paul D. Hubbard, a deaf man. Hubbard was a quarterback on the Gallaudet University (for the Deaf) football team, and he started the team huddle keep the opposing teams from reading their sign language. 

(Uncapitalized “D” refers to deafness as an experience; capitalized “D” refers to people who are deaf and involved with deaf culture.)

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I learned something interesting yesterday. I gave myself a name sign after learning about name signs in my first class and seeing the name sign of the teacher, Deborah. But yesterday, I read this sentence in my ASL textbook that is teaching me about deaf culture: “You can only receive a real name sign from a Deaf person once you have been involved in the Deaf community. You cannot create your own name sign—it must be given to you by a Deaf person.”

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Being in the same (virtual) room with five other people with FND was, emotionally, on a par with finding my birth mother. Every one of us has severe speech impairment. I’d say I’m second worst. I’ve been tingling with a sense of found community. I heard several sentences that resonated with me during our session yesterday: “It’s taken over my life.” “I have seizures.” “I can’t concentrate.” “I’m allergic to noise.” “I can handle being with up to four, maybe five, other people.” Plus, we talked about tricks we use to function. My trick was using Google Translate to play as a means of providing a lot of specific information.

In our group of six, I am the only one not getting speech therapy. It comes free to U.K. residents via the nations’ basic health service. Here, I’m not eligible for any speech therapy. Not only that, three private speech language therapists refused (very politely and sincerely) to take me on as a patient saying to the effect of, “we don’t want to take on patients that we don’t know how to help” kind of thing.

So, finding the group in the U.K., and Stamma, has been very, very therapeutic for me. Just being in the room with them and hearing similar stories is intensely emotional. And now, to hear that Stamma is bringing in FND experts to talk with us, well … I feel like God loves me.

This good double whammy, finding community and starting ASL, has invigorated me; it’s ignited my life force. Learning a language is an exquisite hobby. It’s like taking a drug, I love it so much.

Will it last? Good question. I very sincerely hope so. I suspect that if my speech doesn’t improve, I’ll stick with it passionately. Michelle reinforced a message I got from my course: Get involved with the deaf community to truly become fluent.

Part of my course is studying the history of deaf culture. Contemporary deaf culture began in a specific year, 1988, when the Gallaudet University community, a deaf community, rioted when a speaking presidential candidate was selected—a woman who couldn’t sign. For the Deaf, it was an event equivalent to Stonewall for us in the LGBTQ community.

I wasn’t interested the deaf history part of the course. I began reluctantly, but I love love it now. Knowledge of deaf culture is an exciting part of learning to sign. It’s teaching me to understand the community in which I hope to make connections one day. I’m learning manners and traditions. It will help me understand the person, not just their language, if I should meet deaf people.

For me, being with a deaf person puts me on common emotional ground. We are each dealing with a communication compromise—different but similar. I could tell them some interesting things about the speaking world that I only learned because I’ve almost lost my speech. 

If my goals aren’t achieved, it won’t matter. Going forward is what matters. 

This is moving on. (My new mantra.)