After my frightening weigh in, I was taken back to my room to wait for my first therapist. So that’s why the wheelchair is so uncomfortable, I’m a skeleton.
The first day of Rehab is rough for anyone. By the end of my three and half week stay, I had figured this out and made it my “job” to prep a new patient for that whenever I saw them at breakfast. “Is this your first day?” I would ask. At the nod and deer-in-the-headlights look, I would tell them, “it might be rough today. They are going to be cataloging your defecits.” Deficits. A common term in the Stroke/Rehab community and one that I have come to loathe. I went out of my way to warn other patients because no one warned me. No one told me what that first day would be like. That first day falling on a holiday weekend, when the Rehab ward was staffed with “fill-in” therapists compounded the problem. The therapists who did my initial evaluations, had no long term investment in me. They would see me once, maybe twice and that was it, whereas when I was matched with my long-term Physical Therapist, Occupational Therapist and Speech Therapist on the Tuesday after Memorial Day (which would have been the 29th in 2012), they quickly became invested in creating a rapport with me, knowing we would be spending hours together almost every day. I did see these first-day therapists again in passing, usually on Saturdays, but never worked closely again with any of them. It doesn’t mean they didn’t care. It doesn’t mean they weren’t excellent at their jobs, just that they had no chance or inclination to form any kind of bond with me.
Although the day left a long and devastating impression, I don’t remember much of it, but I have at least one memory of each type of therapy. For Occupational Therapy, which came some time that morning, I remember being taken to the Therapy Room by a lovely young blonde with long Rapunzel-like hair. By the time we got down the hall, I was extremely uncomfortable in the wheelchair. I told her I had just realized I had lost thirty pounds and so she offered to get me out of the wheelchair and let me sit at on one of the Rehab tables (like the padded exam tables in a doctor’s office). There was someone else there, too, probably an assistant who stayed in the room and floated between the therapists. I remember the full time assistant Germaine very well, but that’s not who was there this first day. Anyway, they moved me so that I was sitting on the table (clinging for life is more like it) and put a piece of poster board in front of me. The blonde told me we were going to play Memory. Groan. I have three kids and a freaking PhD. No thanks. But it did not appear I had a choice in the matter. She began to lift up flaps on the poster board, so that I could see them and memorize them. Then she lowered the flaps and told me she wanted me to reach with my left hand to open the flaps and match the cards. No problem. PhD. Well, small problem, left arm doesn’t move. At all, apparently. I told her as much and she said she would help me move my arm if I told her which flap to lift. I tried. I really did. I couldn’t make the game work. I couldn’t remember ANYTHING. I felt the panic creeping in. What the HELL is going on?
I was suddenly dizzy and exhausted. I told her I was afraid I might faint. Suddenly, I was lying back against the assistant, while the therapist tried to get me to just tell her which flap to open. So tired. Even conveying which flap I meant was harder than I anticipated. I didn’t hear the term “left neglect” for another day or two, but that was part of the problem. Eventually, the OT relented and took me back to my room. She brought me an Ensure to drink and told me that there was something called an “endurance schedule” that they could implement on Tuesday, if I still couldn’t make it through all of my sessions.
Sometime later that day, I had a Physical Therapy session. I was ready to stand. Ready to WALK. Ready to be out of this wheelchair that was killing my butt. “Ok,” the PT said, “we’ll get the grocery cart.” Turns out grocery carts are common props in Rehab units. She (I think)–I’m still so trapped in my own impressions of this event that I don’t for the life of me remember whether the therapist was for sure a man or a woman–brought over a grocery cart. She helped me to place my right hand and my “claw” (as I refered to my left hand) on the handlebar and then she lifted me into a standing position. I was wobbly and terrified, balancing almost completely on my right leg.”Fix your posture,” she instructed. I didn’t know what she meant. She tried to tell me and I tried to adjust. “Fix your posture,” she said again, sounding frustrated. I had a vague impression of being hunched over the cart, so I tried to straighten, but I didn’t succeed. The therapist sighed and lowered me back into the wheelchair. “Sit up straight,” she said. I did, at least I thought I did. “That’s not straight,” again I could hear the annoyance. I tried to fix whatever she was talking about. It didn’t work. “I’ll be right back,” she said. She returned with a full length mirror on wheels and turned it towards me. “Look at your posture,” she said. Oh. My. God.
My heart stopped and then it broke. I hadn’t seen myself since the day of my surgery. Now I did. Now I saw the bald, stapled wraith that I had become. Hunched like Quasimodo and leaning perilously to the left. The left side of my face was stiff, too. I really WAS the bride of Frankenstein.
Later (or maybe it was before, I don’t remember the timeline exactly), I went to Speech Therapy. In Stroke Rehab, Speech Therapy covers far more than speaking. Some people may have difficulty with the physical act of swallowing or speaking and that, of course, falls under Speech Therapy, but so does most cognitive rehabilitation. Of all the part-time therapists I met on Saturday and Monday of that long weekend, this is the only therapist I remember by name, Andrea. I wish it was for a good reason.
I had seen Andrea once already that day, in the morning. There was small talk (I think she was evaluating my actual speech abilities). We talked about her two junior high-aged children and I told her about my boys. I liked her. We did some worksheets and I believe I started babbling about being a PhD, a professor and straight A student. I’m sure I was annoying in my repeated assurances that I was “normally” smart. The matching game in OT had rattled me and the worksheets in Speech were equally frustrating. I couldn’t make them work. I think I asked her if she could “give me partial credit” for what I got right or “put a star” by the ones I did well. Again, totally annoying, I’m sure. She said she would think about it and tell me that afternoon.
The afternoon session came and Andrea sat down. She started by making sure that I understood that she wasn’t really going to be my Speech Therapist because she was a part-time worker who only came in on weekends and holidays. Then she went on ” . . . and that’s just as well because I find I don’t really like you and would have trouble working with you. You need to see a psychiatrist. We have one on the ward. You are too much like my grade-grubbing, perfectionist daughter needing constant reassurance. You will work better with someone else.” Oh, YES, she did say that. And then what little was left of my pride shattered into a thousand pieces and I began to sob in my wheelchair. She gave me a kleenex. A few minutes later, she wished me luck and pushed me back to my room. I can remember trying to relate this story to Matt later that afternoon and he said “she couldn’t have really said she didn’t like you.” She did. She really did. You have to speak plainly to people recovering from brain injuries because we miss nuances, so I think she did just that.
Later, they had to cath me again because I still couldn’t pee. I finally got “a shower.” A shower at that stage in my recovery was more like a car wash. They put me in a gown and a “special” wheelchair. It was a wheelchair with a toilet seat in the middle and nothing under it. Then I think either Chaltu or Melinda (one of the techs) took me to one of the shower rooms where she proceeded, in the nicest way possible, to hose me down like a car, including my “undercarriage.” They didn’t even remove the gown completely. They couldn’t shave my legs or under my arms since I was on blood thinners (the Lovenox). The hair in both areas had been growing unchecked since May 7th, the day before my first surgery. Shudder. They also weren’t allowed to get my itchy stapled head wet, so no relief there.
Then, she took me back to my room and put me in a gown. I’m pretty sure Melinda took my handful of belongings to wash that night. Meanwhile, I lay in the bed, humiliated, ashamed and sobbing. What will happen to me? Matt can’t take care of me like this. I can’t take care of the kids. I’m just a burden. They should put me away somewhere. I’m sure it sounds whiny and defeatist, but that’s the space I was in that night. Chaltu came to bring me my night meds and found me crying. She quietly stroked my back for a long time. God bless her. Sometime before it was time to get up again, I finally fell asleep. It had been a bad day.
I shuddered upon reading this Andrea’s response to you. How awful. And it made me even sadder thinking about her poor daughter to have a mother with such a hateful attitude. So glad the techs were so kind that day.
As a PT, I am ashamed that you were treated this way. Your story is very moving. It gives me a better understanding of the patients I help. You are a gifted writer.
Bless you, sweet girl, for sharing such torment. My hope is that sharing it brings healing and greater peace. It certainly opens the eyes of your readers. I am grateful to you for your generous spirit and vulnerability.
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