It was a bit disorganised. I was dressed and ready in the morning. Having movement restrictions though meant that I couldn’t just move a suitcase or bend down to pick up shoes by myself. I had to wait for help and in the end that help was my brother when he came to take me to the rehabilitation hospital. I left in a wheel chair, still in pyjamas. I had taken extra pain meds to prepare myself for what was going to be an uncomfortable trip. I was already exhausted before we even left the hospital. But being wheeled out into the fresh air was a surprise. It wasn’t a surprise because it was cold. It was a surprise because I felt like I could take big deep breaths for the first time in a long time, which I wasn’t expecting. Having been in a building, and mostly just one room, for seven days straight, it was just lovely pausing for a second to feel the cold. All to soon though I was carefully trying to stand up from the wheelchair, sit sideways into the car, and turning my body to face the front without twisting my body. And then we were driving away. Being in a car, doing something that was normal, watching the world going by, was a helpful break while it lasted.
All too soon we had pulled up outside the front of the rehab hospital. My brother fetched a wheelchair and we waited for a moment until a nurse could collect me. It turns out that the representative from the hospital had missed out one tiny detail when she was briefing me the day before. She neglected to tell me that I was going straight into a shared room; there were no single rooms free. My face as we arrived at the room would have been a picture indeed. I nearly crumbled. There was very little space in a two bed room. And I was sharing the room with an eighty plus year old woman. I tried my best to maintain my composure, but the cracks were beginning to show. I was just too tired. Visitors came to say hello just as we had arrived, but I had to decline because I just did not have the energy, emotionally or physically. The nurse who had taken me to the room also had the task of settling me into my new routine. She made the point that the next morning, starting the rehab program, I had to wait for an assessment to be taken of how I do each task from getting out of bed, to showering, to dressing. The purpose of the assessment is so that they could know what level of assistance I needed. Finally, the orientation finished, dinner came, I settled into watching Masterchef, and hoping that I would fall asleep given the events of the day. That, however, was not what happened.
My room mate was a lovely lady who was starved for attention. She had Parkinson’s Disease and could not go home because her husband was in hospital with bowel cancer. She was also very deaf. Everyone who came into the room to speak to her had to shout; and there was a lot of thoroughfare between the specialist care team and visitors. I pulled the curtain across the room but it didn’t help the noise level. The lady was also a high assistance case. The door could never be closed. At night, the light was streaming into the room, the noise of the night staff a constant. My room mate rang for the night nurse nearly every hour to go to the bathroom. And because the lady was deaf, the nurse could not whisper. At one point during the night, the lady did not follow the nurse’s instructions. I heard the panic in the nurse’s voice and then the thud as the lady fell to the floor. The emergency button was hit. A team of nurses arrived in the room within seconds and all the lights put on. There was no sleep for me that night. I don’t do well with no sleep. I didn’t have the opportunity of waking the next day, I watched as the darkness turned to light. Breakfast came and it went. The nurse came with my medication and she went. No one came to do the assessment. I was completely disoriented and I had no idea what to do. I found some clothes and put them on. All I wanted was a shower. The doctor came and did his medical assessment. The physio came and did her assessment. I had my first hydrotherapy session booked for that afternoon. The Occupational Therapist came and gave me all my gadgets so that I could start being slightly independent. There was no assessment that day. But coloured dots started appearing on my assistance chart, they were a combination of red (assistance) and orange (stand-by). I did though have one green dot (independent) for mobility. With a walking stick and with my AFO on, I was allowed to roam. But it didn’t make me feel any better. I came to a decision by the end of the afternoon. If things continued like this, I would be discharging myself the next day. I knew that it was important for me to be at the rehab hospital. Continuously falling into the water trying to walk in the hydro pool showed me that. But what use would being at rehab be if I had no sleep and if my mental resilience was wearing extremely thin?
The moment I was thinking through this decision, the nurse who was supervising our room came in with some better news. I was being moved into a single room the next day. While there was a smile on my face and a ‘thank you’ verbalised, the only thought in my mind was how I was going to cope with another night with no sleep. The only solution was the doctor prescribing a sleeping tablet for that night. And praise God, it was effective. I actually slept that night; I woke up with the same disturbances as the night before, but this time I could float back to sleep. I enjoyed waking in the morning. The smile on my face wasn’t just put on, it was a real smile. I managed to pull back the divide and open up the room. A couple of hours later, coming back from my physio session, I was transferred to my own room.
I learnt a lot about myself in those 36 hours. I learnt that my resilience did have limits. I didn’t realise that my normal way of life is so quiet. I’m not used to constant noise and I don’t do well mentally or emotionally when there is a lot of shouting; irrespective of whether it is aimed at me or not. I have always thought that the most effective way to torture me was either through boredom or by being shut off from people. I discovered a third; constant and inescapable high level noise. I have taken for granted one basic thing all my life – the ability to shut a door. For a single girl in her thirties, I realised how important being able to shut a door is. It gives privacy, peace, and quiet. Privacy is something you begin to covet in a hospital environment where no topic is off limits with nurses, doctors, or surgeons for that matter! To be able to fall asleep in darkness is a wonderful thing. There is a part of me that is ashamed to admit all of this; I sound to myself like a spoilt child. But when your freedom and privacy has become so limited, the ability to shut a door is priceless. I wouldn’t have actually minded to share a room, if I had know about it, and if the person I was sharing with was relatively independent. I realise that it could have been an opportunity to bless another person. Yet something else I learnt about myself in those 36 hours is that I could not be relationally helpful to another person if I have no emotional resilience. And for me, I obviously gain that emotional resilience by sleep! What was lovely though was that the next day, and the day after that until the lady was discharged, I was able to spend 20 minutes each day with her. She desperately needed someone to listen to her, to speak to her, to read the newspaper very loudly to her, and to be relationally available. As a room mate, I couldn’t do that, but as another patient who was being cared for well, I could bless her in that way. I learnt what it took to look after myself emotionally at the most basic level, something I have been hopeless at for a number of years. It took the experience of sleep deprivation to learn and I’m grateful for it.