11:37pm July 20, 2014

Another hospital stay, another experience of ableism.

Another hospitalization, I was vomiting uncontrollably and had collapsed on my bed due to some combination of myasthenia and an adrenal crisis. I knew that I was going to die if I didn’t get monitored more than I was being monitored. Instead of monitoring me more, they evacuated my room, shut the door, and ignored my call button. The sound of my vomiting, they said, upset their nice quiet ward. I shit the bed because I was too weak to get onto a bedpan. They said that I could not be allowed to shit the bed, because if I did so, I might get used to it, and might never use a toilet again. I had already begun hallucinating, but I managed to curl myself into a position where my vomiting was least likely to choke me. Then I collapsed completely and went into a delirious, hallucinatory state where I felt like my body was disintegrating and flying out the window. In lucid moments, I wondered if this was what dying felt like.

My hospitalist was informed of my state, and replied that he was only there to treat my pneumonia and that my other conditions, including not having eaten more than broth for weeks beforehand, including possible myasthenia gravis being aggravated by the vomiting, including all the symptoms of adrenal crisis, were no concern of his. There was an argument about whether I belonged in the ICU, and he said that since he was only treating the pneumonia and nothing else, I didn’t need the ICU. My GP tells me that I am lucky to have survived without the ICU, and that I absolutely belonged in the ICU that and many other times. The fact that I’ve been denied access to the ICU when I’ve needed it has always been pure ableism, and this is the kind of ableism I deal with on a regular basis.

Many times, hospitalists see people with multiple, complex disabilities and decide that they are only going to focus on the disease we are there for. This means we get less adequate care inside the hospital than we get outside the hospital, which seems ironic. This doctor literally did not care that I had not eaten for weeks due to undiagnosed gastroparesis, which was later diagnosed during the hospitalization, after more weeks without eating. He was not concerned about my neuromuscular junction disease that made me weaker every time I vomited, including weaker breathing. He was not concerned with signs of adrenal crisis. He was not concerned about controlling the vomiting that was created by the drugs he was giving me for the pneumonia. He was not concerned that I had fallen into a quiet delirium, the most dangerous type of delirium. All he cared about was that someone come in and change my IV bags once in awhile, that they keep my IV flowing at least semi-properly (ended up with a PICC line), and nothing else. Nothing is so lonely as being delirious and alone in a ward where they are doing their best to ignore your existence. And it was ableism that created this whole scenario, ableism that said “Let’s ignore hir doctors, let’s ignore hir disabilities, let’s ignore hir power of attorney for healthcare, let’s pretend all hir disabilities don’t exist except for the pneumonia. Even if it kills hir.”