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.

•

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.

•

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 ….