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.

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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.

Adaptation Underway

I decided not to wait until Wednesday. I wrote to Dr. Shoja and asked to see her asap. My next appointment is in just less than a month from now. And I’ve asked to see her twice a month for a while, while I go through the adaption phase. And I wrote to all my friends on the island to tell them what’s happened so that they know when next they see me.

I also told them something everyone who knows me needs to know. This is part of what I wrote to them: “And while I’m talking to you about my situation, please allow me to tell you one more thing. Please don’t tell me to relax or to breath or to take a deep breath, as kind, generous and caring people do. I have been living with my condition for ten years and I am in the care of the most wonderful psychiatrist who is experienced with people with my condition and with people who have a speech impairment. I know what to do when I seize. When people tell me what to do, I feel insulted that they think I don’t know, and I feel slight anger that they think they know what I should do better than me. It doesn’t help me to tell me to breath. I hope you understand what I am saying.”

Think of it: People who have never had a seizure telling me, who’s had hundreds of seizures, what to do. I know that they are well intentioned, so I have never said anything, but it has become time for me to speak up.

Yesterday morning, it felt good to light the fire. The warmth is so comforting, and it felt good to be functioning normally. Losting my speech has made me feel out of sync, so doing ‘normal’ things feels good. Before I showered or ate breakfast, I loaded up my phone with some text messages that will be very handy as I start interacting with the world. One gives my name and contact information, another explains that I am non-verbal, and the third opens with an explanation that I am non-verbal and then asks for help to …, and I can open it and just add the question I want to ask a clerk or receptionist.

I was a reluctant purchaser of my iPhone and watch. Now, my phone is a vital communication aid. It is my dearest non-breathing friend. I love, love, love the way is suggests words as I text! I bought a Zoom subscription and installed Zoom on my phone. It, too, is a valuable tool because of its chat and recording features. And I cancelled my landline.

Adaptation!

I opened Zoom and started a meeting. Then I sent an invitation to join to Beth. She didn’t come online, so I called her and I could say, “Beth. Chris. Email.” And she understood. She went to her email and soon she was on Zoom with me. She talked. I typed. And I felt good. It feels very, very good each time I contact a friend and communicate in my new way and feel accepted. I feel like I am winning.

I was kept busy all morning replying to emails from my friends who received my speech update. Plus, Dwight and I spent an hour on the phone with Telus, cancelling my land line and ensuring that I don’t lose access to the Telus IP Relay system. Finally, when I answered the last email, I could walk Her Highness and feed us all our lunches.

I collapsed onto the chaise afterwards and read a bit. Then I watched my favourite vloggers, before going out again for our afternoon walk. Both walks were rather short. It was cool outside, and damp, and I wanted to be resting and warm on My Day.

I feel some modest recovery has happened. With good friends I am saying a words and some phrases. I feel my speech is getting stronger with friends.

But adaptation is a bitch. It’s taken hours to change my banking profile so that codes come to my cell instead of the soon-to-be-defunct landline. Today, I am going to the clinic to give them my cell number to replace my landline number, and to postpone my second shot of Shingrix to prevent me from getting shingles again.

Fuck. Just fuck! Cancelling my landline was brutal. Absolutely brutal. I talked to one operator, she asked me tons of questions that were VERY challenging to answer, then she transferred me to a different person who repeated all the questions, and then he transferred me to another person. Fifty-seven minutes to cancel a phone service. Three transfers, three times through security, and endless, endless times on hold.

The evening was lovely. I just chilled on the chaise and watched a movie and then read for hours. I was bushed from the day. But my fears and sadness, so prevalent on Saturday, are gone.

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This morning, I was up at 5:00, and when I turned on my computer there was a letter from Dr. Shoja. It made me cry because I felt so lucky and grateful to have her in my life. I shall see her on April 6^th, and every two weeks thereafter. How great is she! How great is Canada’s medical plan! I feel better already, just knowing that I have her to talk to as I get used to being non-verbal.

The April STAMMA support group that I lead, is cancelled. It was supposed to happen on Thursday, and I was to lead it alone. Tracey has Passover celebrations to attend, but I am not confident enough to lead it. I have no idea if I could even make sounds, let alone language. So it’s cancelled, and I’m relieved.

Today, we’ll walk with our friends, we’ll go into the village to shop, and I’ll go to the clinic to give them my cell number now that my landline is dead. It’s bright and sunny, but cold. I shall have a nice quiet day today.

Normandy.

Disaster

 I went to bed on the night of April 8, 2016, after a perfectly normal day. When I woke up in the morning, I was having a seizure. It was my first psychogenic seizure, although I did not know this then, so I was horrified because I could not get out of bed and I was thrashing and drooling. It was awful. I decided to call Dwight for help, but when he answered, I couldn’t speak, so that freaked me out even more.

I was amazed that I endured so dramatic a change in my being overnight. Yesterday morning, when I woke up, there was another change, but not nearly so dramatic, and not at all frightening. It was, however, depressing.

I could feel it inside when I woke up and as I went through my morning routine. I felt off, but I had no trouble doing anything and when I spoke to my pets, all seemed fine. But when I went into the village, I discovered things that have seriously upset me.

Two things frustrated and disappointed me. First, I ran into Kris in Nester’s, and I could not speak to her. Normally, I am fluent with her because she is a dear, dear, wonderful friend. The other thing happened in the pharmacy where there is a clerk who is Québecoise. When I went to ask her a question, I couldn’t speak. I have always, ever since April 2016, remained fluent in French. My stutter only affected my English speech.

I can still speak in my Rand voice (the fake Aussie accent that I use sometimes), but I loathe using that voice. It’s not me. It conveniences others, but not me. Something is wrong, something has made me worse. I just hope it passes. I’m sad and I want to disappear. I certainly want to avoid talking. 

My dear friend, David, called me on FaceTime, and I couldn’t speak with him. I called Steve on FaceTime, and again, I couldn’t speak. I’m going to have myself a very nice day, and hope that things are better tomorrow. If I’m not better, I plan on doing some adaptive planning and then I’ll write to everyone with whom I video chat about how I am going to function. I need to use a video chat program that has a (typing) chat function like Zoom does.

I’m very down, but walking in the forest with Sheba made me forget my troubles. Reading is also a wonderful way to escape. I’m going to get the hot tub cleaned and filled so that I can get back to the ‘hydro therapy’ that I love so much.

I find myself grateful for little things. I can say ‘Shebie’ but not ‘Sheba,’ and I can say the names of my beloved puddy cats. I can say ‘love’ and ‘okay.’ I am grateful to be able to say the word ‘love’ because I used to say ‘I love you’ to Sheba often as we walked in the forest.

I struggle to see the point of being with friends when I am unable to speak to them. When I called Steve, after a few minutes I wanted to quit the call. I suppose, if this lasts, I will get more comfortable with being afflicted and that may help me regain some speech. Who knows.

I took a drug to sleep, and as I got into bed, I hoped I’d awaken in the morning back to ‘normal.’ Now, there’s a word. I mean, back to where I was on Friday.

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It’s now, evening. I just got through emailing back and forth with Tracey, my co-lead, at STAMMA. We run the late-onset stuttering support group. I was to write to them today, to remind them of our upcoming Zoom meeting on Thursday, but I’m writing to cancel this month’s session. Until more time passes and I get an idea of what’s going to happen with my voice, I’m reluctant to commit to the session.

I can’t picture myself at a gathering, sitting listening to everyone while I remain silent. I know my friends will encourage me to come; they’re all kind and warm people. But being with people only serves to make me want to speak, when I am alone, I don’t feel frustrated. I can whisper to my animals. It’s silent here. They can hear me.

I’m going to get a text to speech app for my phone. If I am to be with people, I can’t bear the idea of passing my phone around for people to read, minutes after what I have written about has become an obsolete part of the conversation. And the thought of people being politely quiet while the phone circulates would be unbearable.

Text to speech allows the room to hear. It brings me closer to spontaneity. Already, when I want to communicate with a single person I encounter, I type into my phone and then show them the phone.

A big thing that concerns me, is my relationship to the stuttering community. If I am mute, am I still a stutterer. Currently, I do not feel like a person who stutters. My noun is mute—or, as is said now, non-verbal.

Another concern is that, as I said at the beginning of this post, one day I was fine, the next day, I had over a dozen seizures and I could not speak. One day fine, the next, a clinical nervous wreck. My point here is the sudden and very dramatic change. This condition didn’t fade in; it came on like the light comes on when you flip the switch. It’s sudden. And so was this change from badly damaged to totally broken.

I texted Dwight. My brother with a great brain and heart. I wrote him a letter to explain my speech issue and then I pasted the letter, one paragraph at a time into texts. He called me immediately, bless him. He talked to me on Facetime, so I could see the face I love, and I texted him on his phone. It worked, and his call tells me he’s sticking with me. 

I’m likely to transition to do more things on my phone because when I text on the phone, it often suggests the words I want to type, and so I just tab on the word instead of spelling it out. It’s quicker, easier on the person I’m communicating with.

I remember this feeling I’m feeling now. Fear of isolation. It’s what I felt with the Tyrells. I feel unwanted. By whom, by what? I don’t know. Being gay made me feel unwanted, too. I thought I was free of all that stuff. 

If I’m still like this on Wednesday, I’m going to write to Dr. Shoja to see if I can see her asap. She’s professionally important to me.  

I got the NaturalReader app on my phone and tried it. It’s going to be very handy for me. I’ll be doing more practicing with it today, exploring the program. Adaptation underway. I’m not going to do the rest of the things I need to do until my hope dies. By then, I’ll have a list written of things I need to do.

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It’s the morning of My Day. Sheba woke me at 4:40, wanting. Her breakfast. I cannot speak to her, and if I can’t speak to her, it’s a very bad sign. Nothing has changed from yesterday. Somehow, I knew it wouldn’t. Getting the speech-to-text app, and registering my phone for 911 so that I can text, my actions yesterday were the actions of someone who knew that this change in my voice was going to last.

The emergency physician I interviewed for my work with SPACE said this: “The greatest resource for diagnostics in the emergency department is the patient. Tests are valuable, but without vital information about medical history, onset, duration, intensity, location, etc., etc., diagnosis is slower and prone to error. Information from the patient is vital. Our worst-case scenario is when we are presented with a comatose person. A non-verbal person can communicate under the right conditions (with an appropriate tool).”

This patience knew that yesterday was not a ‘one-of.’ Today I am telling Aidan that I am taking a few days to myself. I want to focus on relaxation and adaptation.

This blog feels different to me now. This is where my voice is free and functional. I’m going to learn about the speech-to-text app and read my wonderful Kate Atkinson book. I’m grateful I had a work-around chat with Dwight yesterday. I don’t feel as frightened today. He told me that I’m not alone, that he ‘is here’ for me. And I know that Beth is with me, and Steve is too. 

Yesterday I feared isolation. I felt ‘locked out.’ I still fell locked out, but not from the people that are important to me. Ever since that fateful morning in April ten years ago, I feared this complete loss of speech. Whereas my seizures got less frequent and less violent, my speech has taken sudden steps ‘downward’ toward yesterday.

My hope is dying. However, my adaptation is underway. My speech is fucked but I’m not as sad and fearful, and that’s a big plus.

I wanted to have this graphic I made as my blog header, but I cannot figure out how to get it into my blog layout for some reason. It’s the top picture. I’m still in shock, but I have long been proud of my resilience and my ability to adapt. Onward ….

Back to Dull

I forgot to mention that when I wrote about my weight being 144 pounds, I think my scale was broken. I weighed myself again and I weighed 158 pounds. That seems far more likely to be my accurate weight. 

Friday was cool but it wasn’t raining; I decided not to walk with our friends. My speech is challenging right now, and I didn’t want to talk to anyone. Besides, they wanted to walk on a trail that is dark and often wet, and I didn’t. Sheba and I walked the Elder Cedar trail we like because it is an ideal length and there are no hills. An, the sun came out! When we were done, we came home so I could Zoom with Nicola.

Niki and I chatted for ninety minutes, and then I bid her adieu because I wanted some silent time before I chatted with Aidan at 14:00. My call with Aidan was disappointing because he does not want to approach hospitals. Instead, he wants to approach small clinics, and he’s the boss, so I must start over and see if I can learn how clinics function.

After the call, it was time to walk with Her Highness because the sun was out and I wanted to get outdoors. The walk was great. I loved being out in the sunshine, but it is still quite cool, so I was happy to return to basecamp and read until dinnertime. 

I fed everyone and then got on the chaise to have my dinner and to watch Hamnet. It was fine, after all, Paul Mescal. But I was not terribly moved by the film. I was expecting more. Maybe it was because I read the book, but it was not the overwhelming experience I expected to have.

This morning is chilly but bright. We’ll get more sunshine and no rain, and we need rain. Sigh. But maybe tomorrow. I have no plans for today except to walk, read and to keep the fire going. 

Yum! A chaise to die for!