It’s been a few days since an update on Amanda Baggs and her struggle to get past medical discrimination and get appropriate medical treatment has been shared here. The good news is that the news of her scheduled surgery was true and her feeding tube is now in place.
Now the bad news:
In “So today was interesting,” Amanda Baggs shares the her struggles with hospital staff over inappropriate “assistance” with a bedpan, and an early, ill-conceived discharge plan ‘decided’ without her and other “interesting” features of the day.
In this tumblr post, she shares the story of how her own input was ignored, resulting in inadequate anesthesia during her operation. The result was agonizing and they’re still struggling to treat her pain and nausea post-op.
One of her latest posts may be the scariest of all. A physician wanted to be very sure she was “at peace” with her decision to have a feeding tube and live:
Before I got my feeding tube. After I’d already signed an informed consent form. A pulmonologist came into my room with a gaggle of interns and residents behind him. People who were learning from him. People who looked up to him as a teacher and role model.
He had seen my cat scan. He knew how many times I’ve had pneumonia recently. He knew it would keep happening if we didn’t find a way to stop it. He knew that pneumonia is a deadly disease and that my health was worsening with each infection. He knew how many doctors had tried to talk me out of choosing the feeding tube — choosing to live.
“Are you at peace with your decision?” Is a question I would expect to be asked repeatedly if I’d chosen to avoid treatment and go home and wait to get the infection that would kill me. Not a question that goes with choosing life. He asked me at least three times in a row.
I had a friend who came to visit from out of state, in the room with me at the time. She came because she heard I had pneumonia. Her father died of pneumonia. She was terrified for my life. She witnessed this conversation — easily, as she put it, the most genteel of the ways I’d been pressured to die.
Meanwhile, there are others talking and thinking about this latest assault on a member of our community. Here are a couple checking out – and it’s not a comprehensive list. I am very sure there are others I’ve forgotten, overlooked, or not seen yet.:
Paula C. Durbin-Westby writes “No Anesthesia for Disabled Woman – Fletcher-Allen Health Care (FAHC)”
Bill Peace writes his 500th post! (Yes, thoughts on Amanda Baggs, among other things)
Bill Peace with his Latest, “Fear Exists for a Good Reason“
Steve, thanks so much for what you’ve been doing here. It is indeed an attack on our community, and though we face this on a daily basis, again and again, we can’t be silent. I’ll be blogging about it. I hope ya’ll remember me, I met you and Diane several times, I’m still here with trach and vent and feeding tube, and NOT DEAD YET!
Nick – of course I remember you! I followed your work with Nick’s Crusade and was excited about being able to meet you at TASH (I’m pretty sure that was the conference). I remember being disappointed we were both on our way to other obligations and didn’t have much time to talk, but I did manage to give you a Not Dead Yet button. I still appreciate your advocacy and also – these days – your creativity in the online comic world. I look forward to reading anything you have to say about this latest fight – and look forward to sharing it with others via all social media in which I have minimal competence.
No doubt “they” are surprise, or will be, when “they” (the medical workers suggesting their vow “do no harm” is not for
disabled people, that it’s a two or more tier health care system, with the Hippocratic Oath not for “other” as they define “other”: disabled, poor, people of color)
that Amanda Baggs is getting words out about the bending of their oath to breaking.
I relate to Amanda Baggs. We, disabled all do. (I see
my job as to state the obvious as reminder from an old woman.)
When stamina permits, I’ll read Bill Peace’s (ah, the slogan, NO JUSTICE NO PEACE) article on fear when stamina permits. The title suggests my own experience in a word related way: I have allergic asthma before and on top of severe CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis in UK), the latter requiring use of wheelchair and my doctor of many years, saying in 1985
“You have a poor quality of life.”. (My short answer: It’s the only life I’m going to have and I’m going to make the best life I can.” I was pissed. For two reasons: I was telling the guy, who knew me from before either illness, that I was having a solo show, in Barnard College,
in their new building, the first artist to have a show there. I got it for the asking. A colleague hung the show for me, was later annoyed that I couldn’t reciprocate in some way, she not realizing how ill I was from still new-ish CFS.)
On Bill Peace’s title of article: I heard two shrinks say to
me, “Your fear will keep you safe.”. One in those exact words.
I went to therapy after onset of asthma, to deal with my feelings around getting the family illness as an adult and having family and friends “run away”. After my successful therapy ended, I would go back, for a session to do a “reality check” after some medical worker made a serious error and I’d talk survival. This happened twice, about a year apart. That’s when I heard the words “Your fear will keep you safe.”. (Translation: you are cautious and can prevent many medical errors before they happen or the medical workers can make it worse.) The other shrink who said it was the biofeedback behavioral psychiatrist, a pioneer in biofeedback,who trained me in biofeedback for asthma attacks after a severe reaction to an asthma medication from doctor error required I stop using all medicines because I’d become even more drug sensitive.
With genetic testing, will there be suggestions that women who are pregnant get abortions in seemingly expanded knowledge?
I insert “seeming” because there was a time women found to be pregnant with fetuses carrying the gene for Down’s Syndrome were told to abort. The former Brooklyn Dodger pitcher, Carl Erskine makes a point of saying doctors know more about “mongoloid” children than they did when his wife gave birth to their son 60 years ago and she was told to “put him away” in an institution” and she said, “NO, I’m taking this baby home.”. He was close to the baseball team, who made him a uniform when he was a kid, and he’s been working in a fast food restaurant for 17 years, his father reports. He says people need to know people who are disabled, and talks about the Dodger catcher who became quadriplegic after a car crash, but stayed employed with the team for decades, Roy Campanella.
Finally, who gets told to “choose death”? I asked this before and I ask it again as news of Roger Ebert, the film critic’s death was much in the news. Ebert had cancer that resulted in prosthesis of lower part of his face, and he could not eat, drink nor talk for years until he died. I did not hear of anyone suggesting Ebert kill himself, rather, it was talked about how brave he was, his ongoing good humor as he continued to write…
Oh, didn’t Amanda Baggs ask for a new feeding tube? Are all our lives of equal value in our society? Why not?