When I was in the hospital Tuesday for an emergency appendectomy, I found myself wishing over and over that I had thought to bring some wonderful brochures to pass out to everybody involved with my care. They’re called “What should I Say, what should I Do When I Meet a Blind Person?” Why? Because only one person out of about a dozen I encountered hadn’t the vaguest clue how to help me without insulting me. And I’m talking about people in the medical profession. They should know better. In the first place, it should have been noted on my chart that I was totally blind, so I wouldn’t have to explain a dozen times why I needed help in finding the restroom, in signing the forms, or learning where things were in my hospital room. Thus, the PCA assigned to me for my post operative care had no clue that I couldn’t see. We got off on the wrong foot, when she started talking to me in what I interpreted to be a cell phone voice, that is, with no connection to me, like she was making an announcement from the middle of the room. Using my name would have helped. I asked her if she was talking to me, and she answered in a rather snotty tone, “Well, yeah.” When I asked her to show me how to work the TV, she said, “Basically, you just turn it on.” She still didn’t get it that I couldn’t see. When she finally got it, it took the rest of the afternoon and the evening to convince her that I didn’t need her help in the bathroom. She kept trying to push me in and make me turn around and sit down, when all I wanted to do was shut the door, so I could take care of business in there, by myself. I finally got her to let me shut the door, only to discover that she was still in there with me. I had to explain that it was only my eyes that don’t work. I can go to the bathroom on my own. Then I tried to teach her the method of guiding a blind person by letting her hold onto your arm above the elbow. After the bathroom scene, I’m afraid I got a little short with her on the way back to my bed. She tried to steer me by pushing me ahead of her. I told her it makes no sense to put the blind person in front, especially when she’s pushing an IV pole with the other hand. I had even more problems with the overnight PCA, who repeatedly asked my roommate if she needed anything, offered to bring her snacks and coffee, and kept stopping in to check to see if she was all right. This was all fine, except that she totally ignored me. I’d wait til I was sure she was finished administering care to my roommate, and then I’d ask if I could have some help too. If it weren’t for the leg compressors they make you wear to keep blood clots from forming after surgery, and for the fact that I was connected to an IV pole, I would have just waited til the coast was clear and made my way across the room to the bathroom without help. I could have refilled my own water glass, if anybody had been smart enough to show me that they had provided a nifty water jug with a plastic straw attached. Of course, it was across the room, and it didn’t occur to anybody to put it within my reach. So, there I was, pitifully asking for help, when my roommate never had to ask. The night nurse, whose real name is Joe, was the only person who had any common sense and compassion. He actually offered me a cup of tea. I felt like jumping out of bed and throwing my arms around him. He was an absolute angel. He kept asking me if there was anything else he could do to make me more comfortable. Maybe he was making up for the rudeness of the PCA.
What I learned through this nightmare was that no one should ever have to go to the hospital without an advocate. Yes, it might be inconvenient and boring for the friend or relative, but you really need someone to speak up on your behalf when you’re not at the top of your game.