Hospital

Spina bifida is a condition that requires frequent hospitalizations, especially in the early years of life, which in my case was from 0 to about 20 years old. I did not consciously experience the first medical procedures. Closing the back and placing a drain in my head to get rid of the excess cerebrospinal fluid in my head took place days after birth. I can hardly remember anything of most other treatments when I was under 10 years old. I know it usually had to do with my bladder. Because the paralysis starts around my hips, the bladder and kidneys are affected. This is often the case with spina bifida: hassle with the bladder is quite common.

There is really only one thing that really stuck with me from a hospital admittance as a child: I don’t remember what I was admitted for, but I did get to know the very first person that I consider more than 40 years later, still one of my dearest friends. I was in one room with John and Joost. Joost was a real bully; a downright annoying guy. At least that’s how I experienced him. He made frequent comments about my disability and I can now say that he was one of the very few in my life to have done so.

Besides these comments, I also see a funny situation as if it happened yesterday. At least, for us it was funny; the nurses had a slightly different opinion about this. We wondered what would happen if you shook a huge bottle of Coke and then unscrewed the cap. No sooner said than done. It will not surprise anyone that the room including the curtains and bed linen turned into a huge sticky mess within a few seconds. Well, you get that when you are in one room all day together and you get bored.

Beautiful memories

I have a kind of love-hate relationship with hospitals. I have experienced the most terrible things there, but the atmosphere still feels very familiar and even comfortable in a way. The nasty experiences and the images I had during that time are deeply hidden in my subconscious and only show up when I am faced with an unpleasant treatment or operation, which fortunately now happens a lot less often.

The pleasant and funny memories remain, like the time I was in the hospital because I had a sore wound on my buttocks. In this case, it was more of a sore wound, because at that time the wheelchair cushions were not yet of a quality that helped prevent them, but instead they regularly caused irritations and wounds. It was the only real pressure wound I have ever had, but also the most serious: surgical closure was the only option.

After the procedure I had to lie flat on my stomach for 3 months. This, of course, was extremely boring; I had nowhere to go. Therefore, the door of my hospital room was always open so that I could hear the sounds in the hallway, which made me feel less isolated from the outside world. I was also allowed to bring my own cassette recorder for the necessary musical distraction, which I made great use of. I had connected a separate speaker to that cassette recorder so that the whole sounded a bit better (read: harder and with a bit more ‘punch’). The nurses used this to wake me up: they then pressed the ‘play’ button and turned the volume up to the maximum possible level. Although the recorder was a lot more primitive than what we know today, the device produced more than enough noise to wake me up.

Wetness

Another memory of that recording was – at least for me – quite hilarious. I already had a urostomy at the time. Emptying it was more difficult because I was on my stomach; therefore a so-called night bag – a bag with a larger content – usually used for the night, was attached to it. It was replaced once a day. That replacing procedure was easy; a few minutes job. One morning when a nurse was doing this, it didn’t go smoothly because there was a kink in the hose. As a result, the urine had largely remained in the stoma bag and was therefore not passed on to the larger night bag. The best solution was to disconnect the night bag and pull the hose straight so that the kink would go out again. A male colleague came in to ask her something while she was disconnecting and fixing the kink. Unfortunately he tripped but was just able to catch himself on the mattress of my bed with one hand. Unfortunately, he put his hand on my ostomy pouch which forced it to empty with high pressure. A split second later, the unfortunate nurse received half a liter of urine; especially in her long hair and uniform.

I will not repeat her verbal statements here, but it should be clear that they contain the necessary curses towards the nurse, who made no effort to keep his laughter at bay. And to be honest, I couldn’t do that either; I really screamed of laughter. She walked out of the room, cursing and ranting, towards an undoubtedly long and intensive shower.

Exploring

Fortunately, I was not so bedridden during most hospital admissions. On the contrary: I often visited other patients in the other rooms shortly after the operation. As a wheelchair user you always stand out and you have a higher cuddle factor than others, which I always made handy use of. It was quite easy for me to start conversations with people I had never seen before, and that often led to nice conversations. But well, such a ward is ultimately limited, so I often ran away, with permission. In practice, this meant that I could leave the ward, provided I was back in time for the daily consultation of the doctors. I often stayed away for hours, exploring the entire hospital. One of my favorite places was the shop in the downstairs hall where you could buy anything and everything. It was very expensive, but I regularly got a bar of chocolate or something else that I was not allowed to eat at all. That didn’t last long; the shop owner passed it on to the department, after which the shop became a prohibited area for me. But there were plenty of other places to feed my curiosity. At one point I ended up in a corridor that split into two new corridors: you turned right into the lobby, and left you went into the operating rooms. Since the latter was far from cozy, I decided to take the elevator that was located a bit further away. I rode fairly fast, but still noticed an incredibly attractive nurse approaching me. She went to the ward where the heart patients were. I thought to myself, ‘If I ever get something on my heart and she has to nurse me, give me up right away because I can’t handle that.’ Fortunately it didn’t get that far that day. What did happen was that I had my attention more on that ebony beauty than on looking in which direction to drive. As a result, I banged the elevator door with a loud bang. A huge dent in the elevator door was the result. I could just see how the nurse in question laughed as I drove back into the hall with a bright red face on my way to the ward. I would have had my share of tension for the day!