Wednesday
By mid-morning, the sky started clearing and it was warm and gloriously sunny all afternoon. I was thrilled to be able to work outside, burning trash in my incinerator and planting some Virginia Creeper along the western side of the house. I also got a fair bit of reading done and I’m enjoying the Verghese novel very much. How could I not? It’s set in India, specifically in Kerala and Cochi where I spent a good deal of time.
Mid-afternoon, I went out for a lovely and long soak in the spa. Oh, my goodness it was lovely to be outside in sunshine and warm air and then in the spa. What a blessing it is to live here where it is so silent and enveloped by nature. Sometimes my happiness is overwhelming.
In the evening, of course, I tried to watch a movie, but I was restless and could not sit idle and so I went down internet rabbit holes and went to bed early with Abraham Verghese and his characters.
Thursday
Thursday dawned cool, clear and bright. As it always does, the sunshine invigorated me. I vacuumed, did laundry, swept the cattery and tidied up. By 9:00, thin clouds had rolled in blocking the sun, but they soon disappeared, revealing a stunning and wonderful day. I felt so, so good about the day ahead of me.
And then I crashed. When it came time to go for our walk, I tried to call Sheba and couldn’t. I’ve always been able to be perfectly fluent with her, but when d I tried to call her, no sound came out and all the muscles on my face went into spasm. I rarely write about my voice, or lack of it, anymore. I am so used to my handicap, but it was shocking to be unable to call her. I searched out Freddie, but I couldn’t speak to him either.
The next several hours were awful. I was despairing about the sudden change, worrying about what will come of my friendships. This has never happened before and I’m worried because this is how, seven years ago, I started having seizures and extremely poor speech. Again, overnight, something has happened, and I am at sea.
At 2:00, Sarah and Grievin arrived to get the splitter going. And shortly after they arrived, Bronwyn arrived, and when I tried to talk to them, they could understand me. It’s an odd sound. I sound like people who are deaf but who learn to speak sound. My speech is kind of muffled, but I am understandable, and I am hugely relieved.
I escaped all day into my Verghese book. I just love it. No surprise there. Cutting for Stone, his first novel, was an absolutely spectacular read. One chapter I read today was set in Mahabalipurnam, a city I visited twice, and the characters of the novel visit the temple stones that I loved so much. I’m happy to be reading something written by a man with a prodigious vocabulary and a unique style of writing that adds to the flavour of this exotic tale.
The gardens are done for the season. Bronwyn brought Peonies and two different kinds of perennial Geraniums and my gardens are looking spectacular. ‘m particularly pleased with a new garden beside my driveway where my majestic Ferns are. It looks fabulous. Hiring Bronwyn was a wonderful decision. I owe sciatica some thanks for motivating me to hire her.
The evening began wonderfully. I was relaxed, knowing that although my speech situation is much, much worse, I can be understood when I need to be. I found a good short series to watch on Prime, and I was happy to not be like I’d been all day—obsessed with the state of my voice. Then the phone rang. It was Dwight and I was heartbroken to hear myself speaking. He could understand me, but I just hate speaking now. I sound like my mouth has been sewn shut. Well, not exactly. I sound like I am profoundly deaf person—not to slag the deaf. It’s not that I would feel ashamed to be deaf. It’s just not me. And it takes mountains of energy to force it out. And it’s a horrid, horrid sound. The weird thing is, is that I don’t have the breaks and repetitions that has had me consider myself a sutterer.
At an online stuttering conference, a world leader in stuttering research, Doctor Mark McGuire, he said that I was not a stutterer. The way I was ‘talking’ with Dwight last night would never be presumed to be said by a stutterer.
Dwight said encouraging things. He’s always there for me, constantly checking in. The trouble is, I don’t believe him. I try, but I can’t. Other things are happening as well. I can’t turn the pages of the book I’m reading with my left hand. And when I was ‘talking’ to Dwight, I was very jerky. All my limbs were moving in jerky movements.
I’m scared this is permanent. It was a sudden and profound loss of speech. That’s what happened seven years ago. I woke up one morning with a speech impediment and a seizure disorder. As of yesterday morning, I have a different kind of speech impediment and some mobility issues.
This huge dip in capability stays, there’s going to be uncomfortable times ahead. I’ve been pretty much the way I was until yesterday, in terms of my speech, for seven years. Now, the people closest to me, especially here on Gabe, are going to discover a different speech impediment. There’s going to be questions and a lot of explaining to do. If this disability sticks, I am going to write an explanation and share print versions with friends.
I fear becoming a passive participant when with people, choosing not to speak. I really don’t have a recreational voice. I can communicate, but very, very awkwardly. It’s enough, however, to connect with Dwight. A lot of meaning comes through tone, inflection. As I will say a million times. I sound like a deaf person. He was a guy I dated. He had learned to speak but he didn’t like doing it—and he couldn’t hear his voice.
His, and mine, both have a nasal delivery sound, and there are no sibilant sounds. I sound light years beyond congested. Plus, it’s very tiring to produce. I can’t sustain it for too long.
If I still have this level of severity tomorrow, I’ll be concerned, of course, but I’ll be walking with my friends, and I’ll see how that goes. And later, I’ll be going into the village, and I’ll see how that goes as well. I think I’ll be mute. It’s a guess, not an expectation. But here at home, talking to Dwight is usually easy. I’d stutter, but not much after the first couple of minutes. Last night was brutal.
If I choose to be silent, I’d have no jerks or twitches. All day today, I’ve been coping by signing that I cannot speak and making a noise. I make the noise because it’s all that comes out of my mouth if I try to speak. But I think the combination of grunting and signing makes things pretty clear. I’ll need my devices with me all the time.
I adjusted to seizures and very poor speech, but it took six years. And it’s not just me. My friends adjust with me. Now, we’re going to have to go through it together again—if this doesn’t improve.
Now I’m going to bed. I need to escape from this new me.
Friday
This morning, when I woke up, I knew things weren’t better. I could feel ‘pressure’ inside me. That’s how I’d describe the feeling in the core of my body. Sheba was curled up against me, so I enveloped her with my arm and enjoyed stroking her for several minutes. I love starting the day with a cuddle of my four-legged life partner. Then I tried to say something to her but absolutely nothing came out.
In my head, it's just like it was seven years ago when FND came on. I wonder what’s ahead. I wonder how long this will go on and, as each day goes by without change, I am more fatalistic about recovery and my quality of life. I’m terrified of losing my friends.
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