Silence

We walked at 7:00 yesterday and then, as I did on Wednesday, I left Her Highness at home, and I went to the lab at the clinic for my final blood test that I needed done before my video meeting with Dr. Hull on Wednesday. I have five video chats to get through next week. It’s going to be a nasty.

Yesterday was a day of silence. I tried to talk to Shebs as we walked, and to the cats, but only tones come out, not words. But at least they hear my voice. I was truly ‘locked in’ yesterday. I could no longer say the word, “love.” I’d been able to say it since my neurological crash last Saturday—until yesterday.

Also, I had a very strange experience. When I tried very hard to say a word, as soon as I made a sound, my left arm jerked hard to the right. Incidents like this make me appreciate the explanation for FND being “bad wiring.” 

I had no Zoom calls, no appointments (except the lab where I used my phone for notes), and so I was silent all day. Pete dropped by, but I could not say a word to him. I reckon that yesterday was the quietest day of my life. I did not say one word all through the day.

I felt screwed yesterday. How can I keep my friendships, if I can’t speak to my friends? I was going to invite Nola, Jill and Regina for dinner. They are friends from my dog walking group, and I thought I might see what it’s like to be with them socially. But that was when I could key-speak with them and, at least modestly, participate. But yesterday had me wanting to see how it goes with them on our walk this morning, because if I can’t speak at all, I’m not going to have the dinner.

Yesterday, I was worse than during the previous five days. It feels like I got worse overnight on Wednesday night. I can’t say ‘love’ anymore, I can’t say my pets names or speak to them, I’m completely locked out. I’m doomed.

So, I ordered water to fill my hot tub. The cost has gone from $300 last year to $370 this year. I may switch to well water next year, filling the tub a little every day for a week or two so that my cistern isn’t drained. But today the tub will be filled, and tomorrow I’ll be in it. 

I walked Sheba three times. Every time I walk, I dread running into people. It’s a sad turn of events. Saturday morning, when I was getting gas, I saw Leslie. I don’t know here well at all, but she is lovely, as is her partner, Stewart. I was fluent speaking with her. The deep freeze set in after than conversation. I shall likely never forget that last time I was fluent. However, it may prove not to be my last experience with fluency. I still have hope that things might improve. I’m doubtful, but hopeful.

I passed a fellow I know named Chris on the trails. I signaled that I couldn’t talk and he decided and told me that I had laryngitis. I shook my head to say no, and he said something like “yea, it’s laryngitis, you’ll be fine in a couple of days.” And he waved me goodbye. He pissed me off.

And a friend dropped by to drop off a book I’d lent her, and to pick up three books to read. I warned her by email that my speech had changed, and she wrote back, “got it.” When she got here, she was laughing as I tried to tell her which book was the best. She’s a dear and a wonderful person, but she pissed me off as well. I felt she was laughing at me. I’m sure she wasn’t.

I have a hunch that people know how to relate to me now that I am silent. I reckon that’s the problem. Her laughter may have been nervousness. I guess I must get used to odd reactions. My every experience with people now, makes me just want to live in isolation. I can hardly wait to see Dr. S. on Tuesday.

Late in the afternoon, I realized that now that I can’t speak, all the muscular tension that would fill my complete upper body, making my eyebrows go up and down, my head shake and my shoulders jerk, is gone. If I try to speak, it all comes back, but I don’t try. There’s no point. I’m glad that I’ve found something to be happy about as a non-verbal person.

And more good news: I can whisper. Steve and I talked on Facetime. I’m absolutely thrilled because it means that I can communicate with Di, Beth and Steve when they come to visit. It is dead quiet here, so they can easily hear me. Plus, I have the whistle to call them if I need to.

Since this vocal crash, I have gone to bed every night exhausted. I think I am seriously stressed by this change in my being.

One week from yesterday is my ten-year mark with a broken brain.

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Today, we will walk with our friends. I shall see if I can key-speak with my wonderful friends with whom I’ve been walking for nine years. Then, when I come home, the water arrives for the spa. Hurrah! It’s raining today, but tomorrow is predicted to be gloriously sunny, and Sunday, also predicted to be sunny, the temperature is supposed to reach 18°! And the sunshine, they say, will last all week.

Accessing 911

For a few years after the onset of this fucking condition, all my posts were about seizures and my speech. Mostly, it was about seizures as I was having up to twenty a day. Over the ensuing ten years, my speech has slightly worsened twice; both times, the change was sudden but mild. Several years ago, my posts were more about my life experience—my dull life—that about my symptoms.

Perhaps four years after the onset of my condition, Dr. S. called me a neglected child and that word, ‘neglected,’ caused an emotional crisis and my posts became focused on the process of accepting and understanding the implications of my diagnoses. Then posts settled back into the recounting of my non-adventures.

It seems like a year ago, but it was merely five days ago that my speech stopped altogether, and now I’m back to discourse on symptoms. In five more days, I will have my first session with Dr. S. since this latest step down in my speech capacity; it was a big, big step. One day, I will get used to being mute. I arrived at this point in my mental health journey prepared. I have my Summer uniform ready.

I walked Sheba early so that I could leave her home when I went to the clinic for blood tests. We were on the trails, shortly after 7:00. The lab opens at 8:00, and I wanted to be there early to be sure to get in. It’s a very busy place. Happily, I was finished in time to join my friends to walk our dogs.

I can key-speak with them. Not very well, but even what little I can say to them is better than being mute. Key-speaking makes me present. I don’t feel invisible when I can key-speak. And during part of our walk, I felt very calm and content. It was wonderful to be at peace. Being mute enables me to opt out of discussions and just focus on nature. And being with my friends who now, know, about my muteness, that makes me feel comfortable.

I have adopted wearing a whistle that I can blow to get attention, or in an emergency. Adaption comes in little steps.

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And check this out!

I wrote to BC Emergency Health Services because they run the 911 service, and as I single and dysfluent person, I wrote asking to talk to someone about how dysfluent people can communicate with the 911 service. I told them about the grant that Aidan and I got to work on improving access to medical services for non-verbals. I had few expectations due to past experiences but read his reply below! This response made both Aidan and I extremely happy and excited. I’m really chuffed by the advocacy initiatives that I am taking.

Hello Chris,

Thank you very much for reaching out and for sharing your experiences so openly. I appreciate the time and care you took to explain both your personal perspective and the work you and your colleagues are doing to improve access to medical care for dysfluent people.

This sounds like a meaningful and important opportunity, and I would welcome the chance to connect with you to hear more about your work and the ideas you are exploring. I also want to be mindful of what works best for you, please let me know your preferred way of communicating or connecting (for example, video, chat, email, or any specific accommodations that are helpful), and I will do my best to accommodate that. Following our conversation, I would be happy to loop in the appropriate departments and colleagues within our organization to continue the discussion and explore possible next steps.

Thank you again for reaching out. I look forward to connecting in a way that feels comfortable and effective for you.

Warm regards,

Darren Metta Manager, Clinical Governance | Risk Management

I mean, seriously, could he have written a more generous, open, sincere and co-operative response? I’m in love with Darren already. We may be able to develop a protocol for serving my fellow dysfluent people!

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I had a long nap after lunch. I was drained of all my energy by the stress of the past few days. I welcomed the gentle rain that fell all day. The yard and gardens needed it, and it made it easy for me to rest for much of the day. Late in the afternoon, we went into the village and then for our third walk of the day.

And soon it was dinner time, chaise time, and then bedtime. I welcomed sleep, and I loved falling asleep to the sound of rain—real rain—on the roof. It was a good day, thanks to my letter from Darren at BC Emergency Services.

And more interesting news. When I got home, I brought a copy of our local newspaper with me, and guess what was inside! An article by me! I wrote it months ago when Derek, the editor, asked me to when I told him about challenges I was facing.

This morning, I got back to the lab for the tests for which I must fast. The rest of the day is mine to enjoy by myself. It’s going to be a nice day, weather wise, but I shall focus on having a slow day. I’m holding my breath until I see Dr. S. 

Pete is a Saint

Eureka! I figured out how to upload an image to be the header of this blog.

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I rose, as usual, at 5:00 yesterday. The house was a mess. I hadn’t done dishes for days, and there were Fir needles everywhere. I saw the need to clean everywhere, so as soon as I was up, I got to it. I feel good in a clean and tidy house, and I wanted to do everything I could to make myself feel good because my speech situation brings me down.  

Saturday was such a shock. Sunday, I was very low as the reality of my speech settled in, and Monday was worse, partly because of Facebook saying I was denied for life for violating their ethical policies, and partly because of how compromised I feel in a fluent world. So, I was determined to do all I could to feel good yesterday. The cleaning got me off to a good start, and I hoped to walk without running into anyone, so our morning walk was early, and I chose a remote trail. After that, I planned on spending the day with Kate Atkinson.

The walk was spectacular. The sun had come out, and there were times on the walk when I felt positively euphoric. When I’d find myself standing in a grassy meadow in warm, glorious sunshine, with Sheba beside me and surrounded by the forest and with birdsong as my soundtrack, I feel truly blessed. Feeling so good was spectacularly welcome!

When I got home, there was an email from David. He’s an acquaintance who helped me access FaceTime years ago. He came over to help me again, and thanks to him, I am back to being able to access our community pages. They enrich my life here; I’m truly happy to have regained access.

I read and did some domestic chores in the afternoon, and then Her Highness and I went to Elder Cedar to walk. The stream there is a dribble. Normally it is a heavily flowing creek at this time of year. When I got home, I checked out my Fuchsias. They were bone dry. I can’t believe that I needed to water my gardens in March! It’s predicted to rain today. I’ll bet it won’t. And then we have several days of warm weather (18°) and no rain coming. Hose alert!

Unexpectedly, Pete arrived at 3:15 with his blower and got busy tidying my yard. This is the second time he has done this in a week. He felt badly that all our work on the first cleanup was ruined by the storm. He tidied the yard, and he’s left me things to do at my request, for when the warm weather comes, I love doing yard work and being outside.

The evening was as usual, except for a lot of writing that I did in advance of my meeting with Dr. S. I have put down thoughts to cut and paste into the Zoom chat when we meet on Tuesday. I have lots of them and more will come, I know. That’s why I asked to see her every two weeks. Adaptation is trying, and I value having her to talk to while I go through it.

•

Today I must go early to Life Labs for blood tests in advance of my Zoom meeting with my new HIV doctor. He was resistant to video chatting when I met him online with Kris here helping me, so I will be profuse with my thanks when I see him on Zoom, because he’s setting up a video chat.

Every night, I seem to re-set to zero. When I woke up this morning, I could feel ‘the wall’ inside me and I couldn’t speak to my pets. As the day progresses, I seem to reclaim some capacity; first a word here and there, then I can reach key-speak and communicate slightly better.

I'm Glad I'm Not Dumb!

Monday was gloriously sunny, but cold. I’m so sick of the cold, and I wish it would rain. We’re all worried about the aquifer we draw water from, about losing trees to drought this Summer, and about plagues of insects that often follow warm Winters. I, however, don’t have time to worry about those things, I am too focused on my voice.

Although it’s rather irrelevant, I wonder why my voice has become so bad. I’ll soon be able to ask Dr. S. I’m so glad that I can see here every two weeks for a while. I figure I’ll see her every two weeks until the end of April. I find adapting to lesser capabilities is hard.

I was rather nervous, and yet interested, in what would happen with my friends when we walked. They are the people with whom I am most fluent because I see them three times a week and my brain is used to them. It knows that I am safe with them, so I have always enjoyed fluent, comfortable speech with them. 

I often walk in the lead. I like being upwind of anyone who might be carrying a virus, plus I am alone when I am out front, and don’t need to talk. Also, it’s quieter up front. We have two noisy walkers: Freya, the ever-barking dog, and Di, who speaks loudly because she is hard of hearing.

Walking with them was a mixed bag. I was grateful for their company, but I could not say a word. I felt there, but not there. I was grateful when a person would walk with me and tell me something, knowing I could not reply. But I use gestures and I make sounds to participate as best I can. I felt present when they did. 

My Rand voice is gone. Rand is the name I gave to the voice that, in the past, gave me fluency. I called it Rand because initially sounded like a South African accent. I can’t speak in French with the two local clerks with whom I speak fluently in French. It’s a total shutdown. I can’t even sing (which most stutterers can do). I tried it at home where no one could hear.

I don’t feel like a stutterer anymore; I’m now a non-verbal person. I am considering dropping out of my two support groups if my speech does not come back. I’m averse to gatherings, in video chats or in person. I just don’t feel comfortable listening but being unable to participate. I like being home alone. I can’t imagine entertaining people here, but Dianne is coming in late April, so I’ll see what that goes. When Dave was here yesterday, just one person, I was able to say things in a very weird voice. But he could understand me. I think the same thing will happen with Di. I hope so because it will make me feel less of an alien. We are very close, and she is accepting and adaptive. 

My next challenge is accessing my Facebook account. I need help here as well, from the guy who signed me up. When I signed up, originally, my account was immediately terminated for violating ethical policies of FB. That happened again yesterday. It was an instant blocking for life, and I’d never been on FB before. Now I need my friend’s help to regain access to my account.

Being judged unfairly by Facebook hurt. I shouldn’t take things personally, I know, but I’m very vulnterable at present. I can live without FB, but it’s handy for selling things and getting help. 

I get anxious when I walk Sheba now. I’m afraid of running into people with whom I have spoken briefly in passing. Fear of them, not wanting to entertain, not wanting to attend dinner parties, wanting to drop out of my support groups; it’s pretty clear that I’m now wanting to be reclusive.

Beth and Steve are coming to visit this coming Summer. I’m confident that I’ll be able to speak with them. It’s an odd voice, and it is not grammatical. It’s ‘key word’ speech, but people understand. Yesterday, for example, I said to Dave, “Me, forest (and then I used two fingers and I walked them over my other hand) Sheba.” He knew where I was going. It will be interesting to see how things go with Dr. S. on Monday. I’m writing things to paste into the chat function in advance of seeing her.

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One thing that I find interesting about this change in my speech, is that I knew when this collapse of my speech was going to stick right from the get-go last Saturday. What’s odd, is that I feel good about that.

When I interviewed Shel Glazer for SPACE, and he talked about how important it is for doctors to speak to their patients. He said that the patient is the doctor’s greatest resource for diagnostics. What he said reinforces my experience of knowing it was not just a temporary glitch, and anything that makes me feel good about myself is welcome right now.

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I wrote here a long time ago, that FND was once called Conversion Disorder and people who had it long ago were thought to be witches. I was kind of proud to ‘be’ a witch. Now I am a non-verbal person. Until very recently, non-verbal people were called ‘mute.’ But when I was just a toddler, mute people were called ‘dumb’ Deaf people were called ‘deaf and dumb.’ I’d be mighty angry to be called that.

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Today is another quiet solitary day for me. It’s overcast and cool, but it’ll probably not rain. This has been an extraordinarily dry Winter and Spring is proving dry so far as well. I shall read, we’ll walk, and that’s about it.

Come Thursday, the afternoon temperatures are returning to the high teens, so I will clean my hot tub and order water from my supplier in Nanaimo. I can hardly wait to have the spa back in working order. That’ll be a welcome new part of my days.