Jul 7
I don’t know
I don’t know what to write just now, I don’t think I have anything interesting in my head. Sometimes if I just start writing, something interesting spills out, but I don’t see that happening tonight. I’m not feeling very dynamic.
I went to the mall, picked up some shirts at Express, one blood-red that’s a little shiny. I’m a big fan of shiny shirts.
I don’t know, my head’s somewhere else.
1 comment
1 Comment so far
I’ve been following your blog for a while and I am sorry to see how depressed you’ve been feeling. One certainly cannot blame you and I think I’d be having a change of mind about the trach as well. As someone who works in the medical field, I say without reservation that modern medicine is at times a blessing and also a curse – no question about that. Could you (would you want to?) communicate to your doctors that you want the trach removed and want to be DNR/DNI? If people can proactively decide not to be intubated, can you retroactively decide against a trach?
Just a friendly suggestion, but what if you started writing some sort of legacy pieces that are more congruous with where you are mentally right now? Maybe try writing your own obituary, advice to future generations, survival guide for families new to a SMA diagnosis, how to deal with a global environment that is fucked, how not to fuck up the colonization of a new planet, etc. It could be depressing, honest, depressingly honest, satirical..