1973 rehabilitation stories

For this blog I’m going back to my memories of 1973. I was thinking I had written about that time, but as far as my filing system of my stories shows, I’ve only written about my first roommate (see Wrist Pain is Back). If I repeat my stories, please forgive me.

I was in rehab from March 12 till I went home on July 12, 1973 – 4 full months. Today, for the same injury, the insurance industry would allow only about 1½ to 2 months. So, if I had been injured this year, I’d be going home right about now. Personally, I think that’s too short a time. I know I needed my full 4 months.

For those who have never had a loved one in a rehab center – here’s a little general information. Though, please understand that it’s been a long time since I was in rehab, so both my memory has faded, and my information maybe a little rusty. There are 2 important activities that almost every inpatient participates in – physical therapy (PT) and occupational therapy (OT). I will assume everyone knows what PT is, but OT is less well known. For me, OT was strengthening muscles while doing purposeful activities, and even more importantly using muscles for activities that later might be ones you want to do. Activities I remember doing were sanding down a board for my first transfer board (possibly the best one I ever owned too, made of Philippine mahogany wood), cutting down wood for a lap board, and weaving on a large loom (I wonder what happened to that rug?) I can’t say I’ve done much of any of these since, but I would love to have a large loom like that to work on again one day.

Usually you have PT and OT daily, one in the morning, one in the afternoon. The rest of the time is not free however, especially not in the beginning. A lot of time is spent with the nurses, learning what are called Activities of Daily Living (ADLs). And there are doctor’s rounds, and psych evals, and meals and visiting hours. On weekends there are outings. That was the only time I’d ever seen a women’s roller derby! You don’t have to do the outings, of course, and after a couple of months I was going home for the weekends.

When I first arrived, I was still very weak, and spent a lot of time in bed. The nurses in rehab can’t give you the same kind of attention that they can in a regular hospital, and I remember getting yelled at one time for pushing the buzzer too often. I had dropped something or other, and wanted it picked up. The nursing staff reminded me sharply, that the idea of rehab was to start to do things for myself. All the same I was in bed a lot, enough that I got pressure sores on the soles of my feet where they were pressed into the footboard so that I wouldn’t get dropfoot. 2 large black scabs formed on the balls of my feet, ugly! Those got attention, and helped motivate both me and the staff to get me out of bed more.

In the beginning I had to learn some very basic things – how to sit up (not easy when you don’t have stomach muscles), how to get out of bed, how to dress. Most of these activities fell to the nurses to teach, though OT often would get involved too. Then you move on, literally, to learning how to use a wheelchair, which takes practice as well. And you have to learn how to take a shower and use a toilet. Eventually you get to PT and OT to improve your balance, increase flexibility and strengthen those muscles you have left to do jobs they didn’t use to do. So, the days were pretty full overall. Evenings, after dinner, were for socializing or visitors. My parents would come most nights, with them alternating nights, and bringing my siblings some of the time.

Piersol Rehab is connected with the University of Pennsylvania Hospital. At that time it was a relatively small rehab, perhaps 50 beds, and the people who went there tended to be older. I remember stroke patients, and amputees from diabetes. There were 2 other rehabs in town that catered more to children and ordinarily going to one of those would have been automatic due to my age, but the neurologist who did my second surgery had my parents’ trust and he was associated with Penn, so wanted me at Piersol. I had already been in an adult only hospital not a children’s hospital, so was being treated more like an adult than a child. Plus, I found out later, my parents weren’t so sure they wanted me to start to think of myself as a handicapped child. Keep in mind that in those days, almost all disabled children went to segregated schools. They wanted me back at the same school I had been in, and to pursue the same life I had been on track for.

Occasionally Piersol would get other younger people, though during my whole stay I was the youngest. There were 2 Penn students at one time. I remember one of them had gotten Guillain Barre syndrome. All I remember about him was that he was tall and thin. But I was fascinated with his condition, that he could be so totally paralyzed and then come back so completely – and in less time than I was there. I suspect his feet still drop a bit while he walks though. And I still find Guillain Barre syndrome amazing. The gulf between me at 15 years old, and those college students about 20 years old, whose rooms always seemed full of visitors (the rehab center was only a block away from some of Penn’s quads), was huge and so I didn’t get to know them at all. Another younger man, probably mid 20s, was like a wild man to me. (It was 1973 after all.) He had thick unruly dark hair, and a quite a mouth on him. Towards the end of my stay in rehab, my PT dumped her boyfriend and started a relationship with this man instead, taking off for a vacation to who knows where.

At one point another young woman became my roommate, but she was one I could have done without. She had tried to commit suicide by inhaling car exhaust in a closed garage. Instead she was severely brain damaged as well as a paraplegic. She was NOT good company. It took her forever to learn anything, and she was as likely to be sitting still playing with her fingers or a ribbon as anything.

So, was I lonely? No. I made friends with some of the adults. And I got to know a lot of the staff well. Well enough that one weekend I was invited to go along with one of the OTs, and one PT and her boyfriend to New York to see a Wheelchair Games event (this is the PT who later dumped this boyfriend for the inpatient I mentioned earlier!). The OT and I shared a hotel room for 2 nights, and it was very eye-opening for me. I had never seen so many wheelchair athletes, didn’t even know this kind of event existed. It didn’t exactly inspire me to become athletic! But I enjoyed the games, and the other side of New York that my friends introduced me to as well.

There was a PT assistant, who gave me a recipe called Sock It to Me Cake, that I kept for the longest time. He was a tall sturdy African American who always wore white, who I looked forward to working with. There was a day nurse on the weekends I liked very much, very pixie-ish and always wore culottes, or are they called skorts now? And while I was in rehab, the Watergate Hearings were on, and a lot of us would gather in the PT room where a large TV was set up.

One of my favorite people though, was a night nurse who was on from 11 PM to 7 AM. We were generally supposed to be in bed at those hours, but once I was independent enough to put myself to bed they would allow me to roam around at night. I was always a night owl, still am. I remember raiding the fridge during the night – not so much for the food as the fun of it. This particular nurse had so many stories to tell, and if her work was light that night I might get to hear them. She had been an ambulance nurse at one point. I’ve long forgotten details of her stories, except for one. She had watched her boyfriend die in the back of an ambulance as they were rushing him to the hospital, because another car had crashed into the ambulance and they couldn’t get to the hospital in time. I believe he was having an allergic reaction to something – bee sting? Peanuts? I don’t remember now. Instead he died, and she had a long scar on the side of her face from her own injuries. I think of her sometimes when I hear a siren and I can’t tell where it is coming from.

Overall, I liked rehab. I liked the people, and I liked being away from home. There was a sense of adventure about being there. The rehab was connected to the rest of the hospital complex through elevators and tunnels, and once in a while I could get a voucher for dinner, and take off to find the hospital dining room where they’d have a counter where I could order a decent hotdog, fries and a shake. Not healthy I know, but what a teenager craves! Plus I had the excitement of going exploring and getting lost.

Visits home were traumatic at first, and rehab felt more comfortable. But, after about 3 months I was really ready to go home again, physically and mentally, except for one thing. I had made very good progress, a faster recovery than they had expected – possibly because I was young. But, the one thing that kept me in rehab an extra month had to do with my bladder.

At first they had me set up with a normal indwelling foley catheter, the standard for catheters in hospitals today. It’s a long rubber tube that has a little balloon at the tip that can be inflated with water in your bladder, to hold it in place. But right around 1970 they were starting to promote intermittent cathings for women. The idea is to have a short catheter – usually around 6 inches – and insert it every couple of hours to empty the bladder, and as a result your bladder does not shrink, or have as great a chance of infection or bladder cancer, and you don’t need to use legbags to collect your urine. It makes your sex life easier and cleaner, and eases problem when you get your period. Women are better candidates for this because the distance from opening to bladder is shorter. But it is not an easy procedure to learn to do.

I became good at it, eventually, but was never quick. The first catheter they gave me was made of metal. The stiffness of the metal helped to learn to aim (with the aid of a mirror). I remember a lot of frustrating sessions where I missed more than hit, and I’d end up with bloody genitals as a result. The most common miss is to put the catheter into your vagina, which does no good of course, and then that catheter had to be recleaned and another brought out. I’d go through piles of catheters till I could get one in. The nurses were patient, more so than I was, and the process of learning too hours. For an activity like this, they would be there for a long time, they just didn’t like being called for little services like dropped pencils.

Once my aim was reliable, I was given plastic or rubber catheters. These will hurt your body less when you miss, but are easier to make miss the spot in the first place. The whole procedure, when it is going smoothly, would take about 15 minutes – to undress, put a chuck under me, slide forward in the wheelchair, strap legs apart, position a mirror (my favorites were mirrors sold at car shops like Pep Boys, that have a little mirror on a long stick that I could tuck under my leg), insert the catheter, collect urine in a cup, dump the urine, put away the other toys (oops, I mean equipment) get dressed, then wash hands and catheter out. I didn’t bother to boil my catheters unless I had a bad infection, I just tried to stay clean. And I’d buy cheap catheters that I’d throw away every few days. And that’s how I peed for 24 years, from 1973 till 1997.

I have no doubt I am leaving out stories about rehab. How do you sum up 4 months in 2300 words? But even if I’ve left out a lot, the gist of the experience is in here, what I can think of in the space of an afternoon. And this history is relevant for other stories yet to come, of bladder problems and talking about family. My recovery didn’t end when I was released from rehab. It took about 3 years before I was at my full strength and independence, and by that time I was in college. The summer at home after rehab was particularly hard physically. And the return to school the following year was hard socially. But, those are stories for another day.