I am, by far, in the worst FND condition I have ever been in. I cannot do things I’ve always been able to do such as speak to my pets. I cannot even make a sound. I expect that this will pass, but right now I am totally mute all the time.
I couldn’t say a word in this morning’s clinic board meeting. I was exclusively reliant on the chat function. I thought I’d be able to say at least one or two words, but no! Right after the board meeting, I had my appointment/assessment with Dr. Shoja. I am obviously disabled and worthy of the tax reduction. The good news there is that I will get a tax refund for each year, 2016-2021.
I’m going ahead with my Friday night dinner party, but it may be very weird. I’ll be relying on my iPad to generate speech for me if I am still mute then.
My mind is buzzing with questions; chief amongst them is how I things work now with my friends. I’m concerned about an emergency. What will I do? I’ll be thinking about that over the next few days. I imagine, speech will return. I hope so, of course.
But wait …. I went to the market and saw Shelly and David. With them, I could say a one syllable word—barely, but I made sound. And just before dinner, I got words out with Leo. I believe that things will get better again, and that is going to feel very, very good.
I won’t be speaking at my dinner party. I know that. I’ll nod, laugh, try a word now and then, but mostly I’ll listen. I can’t really have a conversation. Even if I write notes, I can’t get into anything deep. Writing’s okay for help, asking directions, and simple things, but I don’t want to have a talk like I used to do as a speaker. I can’t imagine a discussion.
I’ve been sentenced to living with myself. I feel isolated and I can’t see a way out unless my speech returns. This blog is where I speak. This blog is therapeutic. What really, really saddens me is losing the joy of my support groups. I can’t participate really. It’s just too slow and it’s awful to keep so many people waiting while I type. I’m going to write them a letter each week and post it in the chat feature. That’s all I can do.
I’m going to wait and see. What else can I do? And if my voice isn’t back in January, I may see if I can write a show. I’ve done it before. My students and I put on a 2-hour play with no speaking, except a narrator who read one poem and said only a word or two every ten minutes or so. A show about silence; a show about being mute. Maybe.
What fucking amazes me is that just keep going. I’ve not shed a single tear over the onset of FND. I’ve never felt angry or sad about my condition. Never once. I’ve been too busy learning and adapting to feel self-pity. I’m very, very grateful for my capacity to carry on.
To talk to someone henceforth, I need to schedule conversations on Zoom or Go To—preferably Go To because it is a free video chatting program that is new to me. It’s easy to download and install. I’ll be asking friends to download it because it has a chat feature, but no time limit as Zoom does. And we’ll schedule times to get together. It works, but it sucks. I fear my friendships are going to take a hit.
8:00 PM: To talk to the bank or my doctor, I cannot ask Jay. They can only talk to someone with my Power of Attorney (POA). Dwight has my POA, and so I called him. I knew I was risking failure, but in less than a. minute I learned, yet again, why this guy takes up so much place in my heart.
He was eating by himself. He didn’t flinch when I tried my hardest to speak. I mimed that I’d go, that I’d hang up. But he repeatedly asked me not to go, to stay and be with him while he ate. And I could feel love in his voice. I knew within a minute that he’s my friend no matter what. And now I know all my trues and blues will stick with me. We had a back and forth. He is uber tolerant, and I said words with HUGE gaps in between, and I used a lot of gesture. My words sound hollow and fuzzy like the voice of an old flame. He was deaf.
I’ve been here before—in this land of waking disappointment. I woke up this morning and went to say good morning to Her Highness and couldn’t. Oh yea. That problem. It’s still here. Another day of frustration.