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.

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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.