Yup….I’d say Friday I overdid it in a major way. I had to look at the clock over and over when I woke up! I was incredulous to see 1 in the afternoon. Wow! I got in bed around 11 PM. I watched my favorite YouTube guy, Nomadic Fanatic. Then I looked at my email again and found one from Heather saying she and the kids are flying here from China. I guess I felt all was right in the world and fell into one heck of a deep sleep.

I was skeptical that anything could replace my beloved 800 mg Motrin horse pills, but am pleasantly surprised by Volataren. I only take 2 a day instead of 4 Motrins. It seems to keep me on a more even keel. I could never sleep this long without getting up for a Motrin. The wedge pillow also helps me extend my evening Mestinon. Most people only need one of those pills every 12 hours. I need one every 6. Now that I am on steroids and sleeping semi upright, I can get away with sleeping longer đŸ™‚

Sam is a black guy. He is not easily offended and he puts up with my seemingly silly questions about race. He was the one to bring that up first, 4 years ago. I have always loved his stories about living in Chicago, then moving to SLC. Once I get to know people, I always ask questions about race and ethnicity. I grew up with a zillion plain old white people and one Jewish and one black family in the school district. How the heck am I supposed to understand if I don’t ask questions?

When I first moved here, Sam was one of the most vocal about me needing a power wheelchair. He couldn’t believe I didn’t have one. I used to tremor violently. My arms were easily moving a foot in all directions. I could not walk in a straight line or stand up straight. I had to lean on things. Sam likes to bellow. He would bellow out stuff about where’s my chair and how come I don’t have one yet? He was always especially nice to Rhett. Rhett would come home talking about how nice Sam was.


Yesterday Sam was talking to me when another black guy came over and started talking. I don’t know the other guy’s name, but he lives in my hallway. It was he and his brother who grabbed me one day and prayed over me. Sam is leary of this guy. Until yesterday, I had no idea that this guy’s wife died last Sunday! He went to church, and when he got home, she was dead. We have been losing at least one a week lately. As I always say…the air in here is poison. Sigh….I wonder if anyone can force them to have proper ventilation here?

Well, after Sam talked to this guy, he started telling me about his job at a radio station. There was a woman who always called him and would compliment the music and offer suggestions for music to be played. They would even meet and go places. Well, he hadn’t heard from her in a while and her mother finally told him she had died. Sam was mad that she never even told him she was terminal. She thought she was being a good martyr by not saying anything. He was hurt and mad to be left out. That’s when I told Sam I was about to start hospice. That’s when he got all philosophical about why he was telling me deep things.


All my life, it has made me mad when I read an acquaintance’s obituary. I find out that they were way more interesting than I had ever guessed. I was miffed I didn’t know more while they were alive and miffed that I didn’t know they were terminal. Keeping quiet does no one favors! The survivors are left feeling cheated of closure. There could have been time to be able to say and think things to the now deceased. I will never forget the long letter I wrote to my Vermont neighbor who was dying of pancreatic cancer. It felt good to do that. Unbeknownst to me, a zillion other people did the same thing. They had a huge binder of the letters at his celebration of life.

I have come to think of being secretive as being selfish. But…I also feel self-conscious about mentioning that docs don’t know what else to do and my body is giving out. It’s not like we learned how to act in school or church. That seems like a shame that there is not more openness about end of life issues. We get excited when a baby is born. I think we should also have some sort of recognition of leaving this mortal body as we did for showing up in it. I am steeped in death at this apartment building. I wish there were better ways of dealing with it and talking amongst ourselves.

Friday there was a lot of crashing and banging above my head. It was final move out day for the guy upstairs that died. Guys with a pick-up and trailer moved out massive amounts of furniture. For the longest time, I thought the guy who lived there didn’t like me. Turns out he rarely talked to anyone. Yesterday there were still folks who didn’t know he died a month ago. From my point of view, not interacting with fellow human beings seems like a waste of life. People only have vague memories and feel bad because they felt snubbed. We all need reminders of how to live and die with grace and dignity. It’s not easy to know how to do things we will only do once….and hardly anybody wants to talk about!


It was a wake-up call for me to realize that a woman I hardly knew, and saw probably every other month or so, was so sad that I was going to die. I’m always sad when people die. I feel excluded from the whole process. We all have to whisper to each other about who was taken away in an ambulance this time and who died and the particulars about it. That just seems very, very wrong. Why is it treated like a secret and some sort of an embarrassment? We were all born to live and die. Some of us get sick a lot in the middle and some get sick at the end. Some folks just drop dead one day. The lucky ones sleep through it.

Death should be as matter of fact as saying I went to Trader Joe’s to buy ice cream and bananas. Some people want to know what I bought or where I’ve been. Some couldn’t care less. I think it should be a heck of a lot easier to talk about ALL of our feelings and experiences and to ask questions of each other. One thing living in a place like this has taught me is that if no one knows or understands something, people make up scenarios and possibilities and pass it off as facts. Wouldn’t we all feel more peaceful and secure with the truth?