Howard Rehs

My journey with ALS

May – 1st Week

Saturday was ok. I spent the day at the show, and a few of our friendly and caring clients stopped by to spend some time with me. It seems the 5-hour laughing issue I had caused a problem with the right side of my jaw, which feels inflamed and painful when I chew or yawn (which I often do). Oh well! Thankfully, the heavy rain in Philadelphia stopped by 5 pm and there was no problem going out. The show had a photo shoot of all the exhibitors on the front steps. We all participated (got me with a beard). We headed back to the hotel, and Amy picked up some food. It is annoying that certain things are impossible to eat. It is impossible to swallow if the pizza crust is thin and hard. If the pizza is thicker and has lots of sauce and cheese, it is easier to eat—the same thing with waffles. At the hotel, the waffles are a little thicker and soft. Add a good amount of syrup and the swallowing was much easier.

The Philadelphia Show

I also need to thank Anne Hamilton. She talked with Amy about the pizza they were ordering for the dealers before we packed out on Sunday and wanted to be sure that she had the right kind of pizza and extra sauce for me.

On Sunday, while I was eating my tasty waffles, Amy packed all our belongings and then put the bags and packages in the car. Then, the 3 of us headed to the show. Lori Cohen, a dealer friend, gave us 4 protein shakes for me to try. It is amazing how many people are caring and helpful. The show ended at five, and Lance and Amy started packing. They let me remove the labels and some of the screws (only a few of them). One of the guys from ArtWay came by to help pack two pieces in wood crates. I sat at the table and ate some pizza and part of a Philadelphia Cheesesteak; it’s been a long time since I had one of those.

They got done in under 2 hours, so we got in the car, and took Lance to the train (he got to NYC in about 1 hour). Then Amy started driving to Long Island. Once it got dark, we pulled over and I drove. When we started, we were supposed to be home in 2 hours, but it took a bit more than 3 hours as the traffic on the Belt Parkway was crazy. We arrived at the house and Amy unpacked the car. I decided to shave my beard (had not shaved since I injured my chin). Now I am back to my older look – no beard! Finally, I went to sleep after midnight.

On Monday, I took it slow. I got up at 8:30 and took my Radicava (back on that really expensive drug for 2 weeks). Amy drove to the city (we left pretty late) and dropped me off at the gallery with a lot of stuff … Lance, Nathan, and Neil came down to get everything. That day, I received (through Steven Henry at Paula Cooper Gallery) a gift from the people at the IRS Panel … a book titled “Courbet’s Landscapes.” I took it home to read over the weekend. Went home around 5:30 and took it easy. Amy made me a grilled cheese sandwich and decided to include a small bowl of Campbell’s Tomato Soup. Dipping the sandwich into the soup made it so much easier to swallow.

Tuesday, I woke up at 5:30 and took the Radicava, then went back to sleep (I have not been working out since I fell down the steps).  Got up around 7 and took the next medication—I have to say that the need to take medicines an hour before another, and no food, is annoying. When I need to take the Radicava I am dealing with at least 3 hours before we can head into the city. We got to the gallery after 11, and I worked on the computer, had pizza for lunch, and even did 4 new reveals and posted one that afternoon (I only tried some of the smaller works; I am not sure I can still spin and lift one of the larger ones since the muscles are getting weaker). Around 5:30, Amy picked me up and drove home. We stopped at a local McDonald’s and got a kid’s meal … needed a little variety in my eating!!

Need to thank Jacob Kodner for his delivery, from Florida, of Whistlepig’s Barrel-Aged Maple Syrup. I told him I would have to try it on the weekend in case I got drunk!

Wednesday, I took that first drug around 5:45 and then went back to sleep, took the next one at 7:00, and went back to bed. The fact that I worked over the weekend, and we got home so late on Sunday has made me very tired. We got to the gallery before 11:00, and when I got out of the car, one of the guys from the building came out to help me (construction is going on, and there were a lot of ‘things’ on the Street). Ken Salaz stopped by in the afternoon. Amy picked me up around 5:30, and Lance helped put two paintings to drop off tomorrow morning at the conservator (Simon Parkes) and a frame for our framer (Rhonda Feinman). We had steak for dinner, which was a little difficult to eat, and then we finished with some pineapple ices … a very good one!

Thursday was another late day. Then we headed to the framer (which Amy dropped off) and then to the conservator (again, Amy dropped them off) … not something she ever did, always my job. These days, I sit in the car playing video games on my phone and iPad. Got to the gallery at noon and worked on the newsletter that goes out on Saturday. By 5:15, Amy headed to the garage on 57th Street to get the car and pick me up at the gallery. For dinner, Amy made me an egg and cheese on a croissant. I will say that I eat so slowly these days …. It took about 1 ½ hours to finish it.

Friday was another late one. We got to the gallery after 11 am, and I worked on the newsletter plus texted with a few clients. I am looking forward to the weekend. I plan on doing nothing!!

Responses

  1. Stu dunkel Avatar
    Stu dunkel

    you work harder than me!

    Like

    1. Howard L. Rehs Avatar

      I doubt that!

      Like

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Howard Rehs