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.) 

More Snow!

Last night there was another huge dump of snow and my plastic garage collapsed and is now a heap of broken metal poles, snow and plastic. It collapsed on my car and set off my car alarm not long after 5:00 am. I had to power dress and get out there before the whole neighbourhood was awakened. I hope my car hasn’t been damaged; I’ll have to wait for the melt to see.

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Yesterday morning, I wrapped and padded Sheba’s damaged paw and joined my friends for a dog walk—that’s when the snow started. The walk went well for Her Highness; her limping is much better. I managed to say some words. I use a few simple words to communicate thoughts: cold … fast…walk; speaking like that.

So far, my research is telling me that I am on my own. I’m just going to have to figure out for myself how to carry on. I was really freaked out on Tuesday, but yesterday I was much more relaxed about my worsened condition.

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I have a valuable new tool for communicating. It only works here at home, but it’s very handy!

I had to phone the pharmacy at St. Paul’s Hospital in Vancouver yesterday to order more HIV medication. I’ve been doing it for twenty-five years; I call a number and leave a message. So, I wrote out what I wanted to say, loaded my text into Google translate, English to English, and dialed the phone. When the machine answered, I tapped on the speaker icon under the text and my computer soke for me.

I was worried it didn’t work, but a kind soul at the hospital called to let me know it has worked and that my pills were on their way. I couldn’t believe that! They have never ever called before. I took the call as a good omen. I’m going to manage as a mute.

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This morning, I Zoom with my U.K. stammering group. I’m not sure how it’s going to go and I’m rather nervous about the call, but I really like my fellow members and I know they’ll be accepting.

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The snow and staff shortages due to Covid has stopped garbage and recycling collection here, so the Nanaimo Regional District sent us all an email yesterday telling us that we can drive our garbage to a dump site near our fire hall. But this morning they cancelled that plan because of the new snow. 

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Sheba is exasperating me. I’m so disappointed that she keeps damaging her foot. I put a sock on her, and she takes it off. It can’t heal because she won’t leave it alone. I can’t watch her 100% of the time and I’m loath to use Prednisone again as it upsets both of us in the night. Prednisone makes her drink constantly and so she’s up all night peeing. Sigh. Time will heal her with any luck. 

Look at those layers!

CRASH!

On Dec. 2^nd, my speech got worse, and the past month has been a struggle. Another dramatic decline happened on Sunday night.  I didn’t mention it in yesterday’s post because I didn’t know what had happened until I tried to speak to Dwight and Nicola in calls yesterday mid-day.

Yesterday, I was in a kind of shock all day. A grim shock. I can say some single syllables. I can say some short words, but it’s exasperating and almost pointless for me to try to talk. 

I spent yesterday researching caption phones and the TTY telephone system for the deaf. I also sent an appeal to the Island Deaf and Hard of Hearing Centre in Nanaimo, asking them if they can help me get an ASL coach and about the TTY service. I also wrote to the local health service society that has in its mandate, to prevent the isolation of Gabriolans. I’ve had no reply to either request for help so far. 

I’ve started writing to friends to tell them not to call and to email instead. I can communicate with friends via Skype or Zoom; both services have chat functions. I’m a fast typist, so it’s not too bad. That’s how I wound up talking with Dwight.

I’m glad that I began ASL before this second decline. I haven’t spent a second in sadness or self-pity, not a second. I’ve had a deaf friend; I know that I will make friends who sign. I absolutely love and will always love my logical family of speaking friends, but my relationships with them are going to change. 

I can witness with my speaking friends, but I can’t interact with them on equal footing. I am at a disadvantage in the speaking world. Hence my desire to meet signing people. Within months of moving to France, I made friends even though I didn’t speak the language. I hope, and believe, that it will be the same with signers.

What if my voice comes back? It won’t change my plans. What comes back won’t be pretty; it’ll never be like it was before FND. One thing I know about FND is that it doesn’t go away.

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This blog is no longer just an amusement. This is where and how I will best communicate what’s going through my head with friends.  

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Chatting via Skype or Zoom works decently, and something interesting has happened: I gesticulate and make exaggerated facial expressions a lot! I’m pidgin signing and saying the odd single word.

Beth “senses” my voice will return. I hope that she is right, but I can’t put any weight on the “senses” of a friend. One FND expert in the UK says FND can be progressive; Dr. Shoja thinks, based on her experience, that FND floods and wanes. I’ve had two sudden and dramatic declines in my speech in one month. I’ll plan for the worst and hope for the best.

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Vancouver got a huge dump of snow yesterday. We had none here, and the forecast is for only rain in the coming week. Huzzah!

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A raptor visited yesterday. It wasn’t a Cooper’s Hawk. I’ve seen lots of those. It might have been a falcon or another type of hawk; regardless of what it was, it was magnificent to see up close. 

Assessment

It was lovely to awaken yesterday and see that most of the snow is now gone and that my plants had sprung back into their usual shape. And although it was clear, the temperature was above zero—just above, but above.

I had a ton of laundry to do, which I did early in the morning, and Merrill stopped in to say hi and to fill me in on where she and Leo’s house is at. Progress has slowed slightly as of late, so she’s hoping to light a fire under the construction crew. I was glad to see how keen she is to get moved in. They expect to move in mid-February.

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I put four pounds back on over the holiday. Pooey! I’m glad the holidays are over now and that I can get back to controlled consumption and studying signing. 

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Shocking news: Pinecone Park has been assessed at $780,000! I paid $475,000 four years ago. It’s great news as I have been pondering selling this place that I love so much. I don’t want to leave, but as I age, it will get harder and harder to maintain everything. And I have a hunch that if I get good at signing, I will want to live where I can meet up with other signers and there doesn’t appear to be a single signer on the island.

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Sheba seems slightly better, but her paw still has healing to go. She is still unwilling to walk, but a couple more days of rest at home and she might be fine. She’s being good about not licking herself, but then I have her in socks.

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I bought myself a new iPad so that I can log into my ASL courses by the fire and on the deck (in the Summer). I’m super keen to memorize every day. I’m quite chuffed by my learning to date. I find it easier to learn ASL than French; I’m thrilled at my capacity to remember signs. I’ve really taken to this language.