So, I am in a major funk. I will share, Reader-land, so you get the real me. Even the bad stuff. Only read if you are strong, however.
I’m getting worse. Now at night, I wake up with crap in my lungs that I can’t cough up, or some kind of fluid in the back of my throat that I spend ten minutes trying to clear. I don’t sleep well, which isn’t new, but it’s partly because I have a stuffy nose and can’t breathe. And picking my nose is impossible by myself. You will not appreciate your ability to blow your nose until you can’t!
It’s the frustration of communication that is really getting me down, though, almost resignation to get it over with. My brother was in town, we barely talked. When I am the center of attention, I am too slow with the Tobii and the conversations move too fast. Without Tobii though, I may as well not talk, because I run out of breath, pause, and either have to repeat myself or the conversation moves on. Bluntly, human conversation is lonely. I know God has this in mind for me because I think highly of my own deep thoughts on everything. It doesn’t make it any easier to take, frankly. So, I will keep on.
Lively is in the shop, and without rapid fabrication, I am not sure I will be able to use her again. There’s a major design flaw with the donor chair which makes it extremely difficult to drive in my state. It’s a trifling thing with far-reaching consequences. You see, I have two gadgets that prevent my head from falling forward and they only work on Lively. And the seat back is correct, so I have no neck strain. In Rocinante, the blue chair, everything is so messed up that I get neck strain leaning back, and a small bump will send my head crashing forward on my chest, and most definitely not in the Pilates way! If I try to lift my head, I push or pull on the joystick, and I may have damaged the drywall in the elevator. Ever since they ” fixed” my chair at Hopkins, it’s hurt to sit in. And don’t get me started about riding in the car! Holy cow, it hurts!
There are other things but I don’t need to get into them. This is the bit that gets used against any sainthood cause, right? Well I will add more fuel. I’m no holy man. I just wrote a long post about angels, and I forget my angel all the time! Padre Pio used to talk with his angel, mine’s been screaming at me to please talk! And I keep complaining!
Ok, so I will stop complaining!
Joe's ChronicALS 
wow. you call that complaining….I’ve heard more complaining from the people in front of me a chipotle–but in their defense it’s NEVER enough chicken.
Sorry you have all these discomforts. Interestingly, I never hear you complain in person you always have a great attitude and no one would know. Oh sure we see you and your struggles but your face and attitude are always so pleasant….very saintly if I do say so myself.
Love you buddy
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Joe — you’ve never me but I’ve met you through your posts which I found via a ‘google’ search of “Pray for Joe” (which I do and for your family, too). I’ve attended 7:30 Mass for some time and observed you and your beautiful family from afar. I saw the “Pray for Joe” sticker on your car a while ago. Not exactly stalking but maybe … Regardless, I’m always amazed and grateful for your messages to reader-land. May God bless you and your family.
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Joe you saying these things helps all of us to remember to slow down and wait. You are so brave and an incredible example to all of us to live even if its hard. I pray for you all the time and will continue to pray.
God Bless
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Love and prayers Joe. I love reading your posts. Humor, wisdom, insight, the rawness and fragility of our humanity, deep thoughts, clarity, sometimes some potty humor.😀
You are a gift to those who know and love you. To those who read your posts you are the real deal and an inspiration to many.
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Joe, I’m sorry that you feel we didn’t get to talk much. I hope you weren’t feeling uncomfortable while I was there regarding the communication issues. If anything, I was feeling bad because it took me more than one try to understand you talking. If I were around, I feel that wouldn’t be an issue. However, I was more than happy to wait for Tobii to communicate your thoughts and witty Joe retorts. I was more than grateful that we were able to have the time together that we did and talk. Did we dissect Thomist philosophies? No, but we talked about real life stuff and I felt that it was very natural and normal (considering the situation). Every moment I was able to spend with you was a gift and I am hoping to make weekend trips more often to visit. I love you, Joe!!
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