“I hadn’t realised …….. the amount of pain and discomfort that was kept at bay in hospital by the drugs. All across my back it felt like I had taken a pounding with a baseball bat; a pummelling all over.”
When it was time to leave, my dad and girlfriend came to collect me from the hospital. After a wait for the medication, my own small pharmacy of fourteen daily pills, to be signed off, I was on my way home.
When we arrived I hobbled slowly from the car, up the few steps to the front door and I was in and very grateful to be out of the mental institution. My sister, mum and Gizmo the family dog were there to greet me; I was home, I had made it.
I hadn’t eaten a thing in hospital and was very weak. The food was disgusting and I didn’t understand why. It may have been produced en masse but I didn’t think it was an excuse because it seemed that the most important thing for me, and everyone else on the ward, was to eat healthy food to regain strength and start to heal whilst also keeping any infections away.
I was never very hungry after the operation; it was something to do to break up the monotony of the day and on the odd occasion where I had felt like eating it would have been nice to have something that didn’t resemble cardboard. I had been confused about why the hospital hadn’t put more emphasis on providing healthy (or even edible) food, my tastes buds may have been off with all the medication, but it was still horrible. All I had managed was a sandwich the day before I left, which Dad had brought in.
An added issue as a result of all this was that a particular nurse had constantly nagged me, saying that I needed to pass solids before being allowed to go home. I explained to her that I hadn’t eaten in four days so there was nothing to come out!
That evening I sat down to eat a wonderful home-cooked meal which Mum had prepared. On the plate in front of me there happened to be an array of green vegetables and in particular I noticed the cabbage. Looking at the plate I smiled and lifting my head I quietly said to everyone around the table: “I couldn’t have eaten this if I had chosen the titanium valve,” and feeling reassured I ate the whole plate of food, enjoying every mouthful.
Another thing that added to the sense of insanity that surrounded my experience in hospital was the lack of sleep. At best I had been passing out through sheer exhaustion and intoxication; it was never natural sleep.
The first night I was at home I started to settle down in bed which, a very slow process where I moved at a sloth’s pace, if that, because everything was so uncomfortable. I had instructions to lie on my back and not to roll over onto my side or front for twelve weeks to allow the ribs to fuse together and avoid extra pressure to the chest but I found myself unconsciously starting to roll over in the night and would wake up mid roll to correct myself.
It was hard and very uncomfortable as I preferred sleeping on my side. I had pillows propping me up because I struggled to breathe when I was lying completely flat; it felt like someone was sitting on my chest and the pressure would become unbearable. I didn’t get any sleep for a long time.
I hadn’t realised until I got home the amount of pain and discomfort that was kept at bay in hospital by the drugs. All across my back it felt like I had taken a pounding with a baseball bat; a pummelling all over. It was the ache of many small hard bruises constantly tweaking. I had thought my chest would hurt but it didn’t once. I had to get extra strong (pass-out-strong) painkillers to cope for a few days and nights.
Of course the pain was a side effect of the procedure. Sawing through the rib cage to get access to the organs, the ribs had to be put somewhere to stay out the way, so they ram each rib cage to either side of the body which then causes massive pressure on the back muscles which are squashed together.
Something else I didn’t realise was the extent to which I would have to encourage myself to breathe deeply to open up the lungs and reach full capacity again. They had been deflated during the operation so that now only a small amount of their volume was being used. The nurses advised me to take big deep breaths and inhale as much as I could to inflate them again. As soon as I would start to inhale more air I felt full up and out of breath at the same time. It was like going for an intense training session and really pushing yourself to the point of gasping for air, only I couldn’t inhale enough and when I did I was full.
This gradually got easier as the lungs started to stretch. My gulps for air became longer until I built up to holding my breath for a few seconds. I used daily walks (for want of a better word), twice a day, to practice this deep breathing and get the most out of being outside. On the first walk I managed ten metres to the tree outside my home and I remember saying to Dad: “that’s ok for today,” then turning around and coming back.
Each day I would look forward to my morning and afternoon strolls as it was a chance to be outside and feel the open space. It was the most important part of my recovery to start being active as soon as possible. I enjoyed the feeling of my body moving, even if it was at a snail’s pace, the important thing was that I was moving.
With each walk I would make sure I went that one step or a few paces further, so by the end of the week I had reached the top of the street. There would be a point whilst walking when I would suddenly have no strength and I knew it was time to turn back. It wasn’t a gradual loss of strength; it was immediate, as if I had used all the energy my body was going to provide and a switch had been flipped telling me that I was done for the day.
It was slow going but never felt that way. I stayed focused on just doing the task at hand, without any distractions. All I had to do was walk as best I could and take some deep breaths.
My parents had been looking after me for the first week I was at home and quickly worked out that the day would be based around when I was not passed out, which would happen at any instant.
I would be up early and relaxing on the couch, then I would drift off for a while and then come back around for a bit. I was never fully with it because I was still taking a lot of medication which gave me a strange spaced out feeling. I couldn’t make any decisions, all I could do was be awake for a while and then pass out without warning.
I have a wonderful memory of watching Clint Eastwood films with Dad in the afternoon; it felt so special just spending time with my parents with nothing to do but get better.
Mum’s cooking and both my parents’ love was what I needed and it helped more than I knew.
The following week my girlfriend was there to care for me; it was still a full time routine of helping me shower, get dressed and then general support when I was awake.
She had started her dream job only a few months before and I could sense a struggle in her between wanting to do well at work and passing the probation period as well as giving me the care that I needed. She had never been emotionally strong and it became clear that it was all too much for her.
One day we went for a morning stroll as normal, reaching the park common at the end of the road by now, and as we turned to head back I recognised a figure coming towards us; it was my friend Ben.
Ben lived nearby and happened to be going through the common so came over to say hello. He remarked that when he had first seen me from afar he had thought I must have been a very old, crippled person because everything looked like a complete struggle. It was only when he got nearer that with some shock he realised it was me. We smiled and chatted for a few brief moments and all of a sudden, as usual, the switch had flipped and my energy drained away, so we said goodbye and started to make our way back to the flat.
On the way Tiana asked how I was doing and if I knew whether I would like some food when we got in as she wanted to get some work done. I said that I wasn’t sure and that I need to get back to the flat to see how I felt and go from there.
She pressed further asking if I could give an indication and saying: “I need to know to plan the day and to get things done.” I let her know that all I could do was focus on walking and getting home as I felt very weak, and asked for a moment to just do that first. In an instant she became annoyed and seemed wound up asking: “how do you not know? Can’t you answer this?”
I started to feel unsure about what was going on, I felt as though I was surrounded by a tense cloud of confusion. I explained that at that moment it was a struggle simply walking and it was taking all my concentration, anything beyond that was unanswerable until I was back in the flat. If she could just help me to get home and we could go from there. Muttering under her breath she impatiently walked a few steps ahead and said: “I think you’re being selfish.”
I froze on the spot and stared at the pavement in front of me in disbelief. I couldn’t comprehend what had just been said; it seemed that my slow walking and lack of clarity had got to her.
We got home and I didn’t speak to her. I tried to do things for myself; making a cup of tea and even getting into the shower to wash but it was a waste of time as I couldn’t lift my arms more than a few inches from the side of my body. Not only did I not have the strength to lift them, but I also wasn’t allowed to raise my arms that high as it would stretch the skin across my chest, opening up the wound and splitting the ribs underneath as they healed. For the same reason I couldn’t turn my body appropriately to wash; unable to bend down I was still rigid and feeble like an old man.
She was in the lounge on her laptop and tried to speak to me when I came in but I ignored her. She tried to talk to me a few more times but I didn’t know what to say and sat in silence. My head was spinning with confusion, like a whirlwind it was a complete emotional mess.
There was now this void, like a glass wall separating us as I sat on the other side of the lounge. I tried to understand the reasons for her reaction. Perhaps she felt the operation had come at a bad time. At last she had something to work for and was extremely interested in; not just a normal job, and taking care of me had come at the worst time for her.
She had spoken to her boss and he was happy for her to take a week off to care for me, saying she could do some work as and when she could.
Looking up from the laptop she said: “I can’t do this, you won’t let me help so there’s no point being here.” I was still in shock and barely acknowledging her I shrugged my shoulders and she went downstairs to pack her bags.
My sister was in the flat and about to leave to start her shift at work. She came into the lounge to say goodbye and immediately sensed something was up as I sat there. She was late and rushing out the door so went downstairs to leave. I heard voices from downstair and then the front door opened and closed. There was a long pause and I waited to hear my sister’s car start.
Tiana then called up the stairs to say she was leaving. I didn’t know what was going on and I desperately wanted to. Not knowing if I had imagined the whole thing or done something terrible to upset her. I mustered all my strength and cried out: “what’s going on? I dont know whats happening, please, am I imagining this?!”
I heard the door close.
There was a short pause followed by the sound of footsteps coming slowly up the stairs. Tiana came into the lounge and sheepishly sat on the end of the couch with her bag.
Looking at her and feeling as though I had finally lost my mind I explained how confused I felt and that I didn’t know what was going on. I carried on to say that I understood the job was very important to her and that I was sorry I couldn’t be more specific about how I felt: ‘‘I’m tired one minute, hungry the next, then passing out, feeling sick, exhausted, emotional, in pain; it changes so quickly. That’s why I can’t tell you that I’m going to sleep or that now is a good time for you to work, I genuinely don’t know. My emotions and body are all over the place, everything is really hard right now and I can’t think constructively, or at all. I just need some help please; to be looked after.’’
She timidly nodded her head in acknowledgment, heading downstairs to unpack her bag. Perhaps I needed to explain all this for her to understand how I felt and what was going on.
My sister checked in with me shortly afterwards and I let her know everything was ok and that she didn’t need to come back from work as Tiana was staying. I later realised she had hung around outside in her car for a while to see if Tiana left.