Alex understanding my recovery
When people say I woke from a coma it sounds like waking from a restful afternoon nap, but the truth is being woken from the coma was more frightening than the stroke itself. I was at a stage of being in and out of consciousness and had an emergency doctor on top of me punching me in the sternum followed by the removal of my breathing tube. I had glimpses of my family but I still had no idea what was happening to me. The muscles in my mouth and throat had been paralyzed, so for a long time I was feed through a tube in my nose. Once I was conscious enough to interpret a conversation I was told time and time again of what had happened to me and how my life will be different from now on.
The next few days were a blur of being semi awake and having nurses inflict pain stimuli to my legs and hands to assess my level of consciousness. Every half an hour they would routinely come around and put pressure with a pen on my nail beds to determine pain reaction. This was extremely painful and at the time I could not understand why someone would want to do this to me. Because of the brain damage I'd suffered my attention span was only minutes long at most so every night I'd wake up numerous times not knowing why I was in hospital and could not move or speak so I'd mumble loud enough for a passing nurse to hear and they'd explain to me the entire accident again. It was utterly terrifying not knowing what had happened to me. After a few weeks of speech therapy and mouth exercises I was able to hold short very mumbled conversations. If somebody had asked me what a stroke was before I'd had one I'd have said I don't know something old people have or something.
One of the Interns on the stroke ward at a Melbourne hospital that initially viewed the MRI films of my brain told my wife and parents at a meeting that it was not very likely for me to ever walk, or work again and that I'd basically need full time care for the rest of my life; this was his opinion judging by the amount of brain that had been killed from the stroke. I'm forever grateful that my family chose to not share that doctors (opinion) with me because I was so physically and emotionally fragile that I would have believed anything the doctors said, and having heard that would have drastically changed my recovery and the way I looked at it. If I'd heard a doctor say that I'd have taken that as pure gospel and I'd definitely still be in hospital today.
I was moved from the intensive care unit in the hospital to the stroke ward once I had stabilized, and then onto another local hospital stroke ward after a week. This was much better because my family was able to visit me every day, Mum could stay overnight with me, and my wife was able to bring in my four month old son so I could have a cuddle.
The fatigue that was caused by the stroke was absolutely debilitating, I was so in an out of sleep I was barely able to talk or even listen. And my memory was very bad so I'd have to be told time and time again why I could not move my body. Needing help to use a bedpan was the lowest point of each day, a grown man not even able to go to the toilet by himself or clean himself after it. It really got me down losing all dignity like that. But the nurses were fantastic in trying to make me comfortable. I was given anti depressants and told that my brain was no longer capable of maintaining serotonin levels to keep me happy, I think they helped a lot through rehab as it was such a terrible time in my life.
After the stroke it was immediately evident that my inhibition/brain filter was extensively damaged and this is something I still struggle with nine months on. I have come to learn that your mental filter not only determines what you say and do but also what you think and when every little thought you have is allowed to be pursued unfiltered you can get into a lot of trouble, because thoughts can completely consume you. If I had had a bad day at rehab and had a thought to do something silly like self harm, this thought would consume me for days and even weeks. Psychologists have been working with me to sort my thoughts out but it's going to take a very long time to learn how to 'think' again. For a very long time I believed that the lucky stroke victims are the ones that die because it's was just far too hard to recover. I feel I am a completely different person to what I was pre-stroke in the way I act and think, it’s like a I’m being made to wear shoes that don't fit.
I still sometimes do not recognize my reflection in the mirror, it’s not that I look different but I feel very different when I look myself in the eyes.
This is not something you expect, or can be warned about as every stroke is so different. Through many neuro psychology appointments I began to understand the gravity of the damage that has been done to the right side of my brain. They explained to me that I would be faced with very radical personality changes and changes in what I think about life. This has by far been the hardest part to deal with. Not knowing who I am anymore or what I want is extremely hard to deal with. And I feel for my wife being now married to a man she did not choose to spend her life with. The mental side of the stroke has been a lot harder to recover from than the physical side. And it's extremely hard to hear people say that I'm doing so well when I know deep down I'm not doing very well at all. With stroke being such an invisible injury, people assume that because I can walk and talk, that I have recovered. But the invisible damage is going to take years to recover from if I can at all.
Once I was ready to go to rehab it was a matter of waiting for a bed to open up in a rehab facility. Because I'd been told so much about how recovery depends on what you put in in the early days, I felt as if I was just dying in a hospital bed unable to move and not getting any help to physically get better. It was an all-consuming feeling of dread that I would never recover whilst I was waiting for a spot to open up. The one small step in this waiting period was the removal of Nasal Gastric Tube as I could finally swallow again and lots of speech therapy.
Once I got the call that a bed had opened up I was moved to a rehab centre, which is an amazing rehab but feels a lot like a nursing home for older people whom have had a stroke. I was given a strict timetable of physical rehabilitation for my arms and legs, and I chose not to setup the television in my room as I thought my time would be better spent doing exercises instead of watching television.
From then on recovery became my life, doing relentless exercises and if after hours of practicing I was able to move my leg or hand at all I'd consider it a productive day. The hardest part of the physically rehab was knowing the amount of work you have to put in for such little gain. Some days I'd be far too tired to even get out of bed and I'd end up in tears because I could not move. The amount of times you have to use a muscle before your brain re wires itself is about 20,000 so I'd sit in my room and do exercises all day long with the help of my family. Just as the doctors said the bigger muscles in my legs came back first, the muscles in my arm and hand are slowly coming back but will likely take several years before my left arm is even close to being normal again. Every day I was able to move a little more. When friends would drop in to visit me I could see the pitying look on their faces as they looked at their once energetic happy friend now in a wheelchair unable to move with the skin drooping on the left side of my face. They did not say anything about how bad I looked but they didn't have to either.
Once I was able to sit-up straight unassisted I was given a motorized wheelchair which gave me a little independence to move around the rehab by myself, still most of my time was spent in my room alone; if the days were long, the nights were longer minutes went by like hours as I tried to will my hand into making a fist. I'd been told that if you think about moving your hand enough your brain will eventually recognize it and you will do it, it took months of electrical stimulation to the muscles in my arm before I saw the smallest flicker of activity when I saw it, it was like Christmas morning. I finally saw a very dim light at the end of the tunnel. Thankfully my sister in law who is an occupational therapist and basically an expert in stroke recovery was with me nearly every waking minute making me do my exercises and stimulating my brain to help it re wire itself. I did not appreciate it at that time but looking back it's exactly what I needed. I had no idea how amazing my brain was. From not moving at all to moving my arm just by thinking about it. I was told to use the memory of moving my arm to start moving it again and it actually worked. I'd started to use the undamaged part of my brain to do what the right side used to do. I did not believe it until I saw it happen in front of my eyes. Neuroplasticity (the brain rewiring itself) seemed like a fairy tale to me. Being pessimistic, cynical and not believing in it actually held me back quite a bit at the start.
The exact cause of the stroke is still unknown but the brain specialists have put it down to either my artery having an unknown disease to the point where a hard run was enough to split it open and send something into the major artery in my brain, or just pure bad luck. I was immediately put on medication and I am told it will never happen again. But in the same breath I was told it should not have happened to start with.
Once I was allowed to take a few steps unassisted the first thing I said I was doing was I was going to use the bathroom by myself, but due to the fact that I could fall over very quickly I had to be assisted. At the time I was so excited to be able to use a toilet and not a bedpan I did not care that a nurse had to watch me. It was an extremely small step to getting back to a normal life. It was extremely unpleasant doing my business in front of people everyday but I just kept thinking it would be much worse for them. The nurses I got a long with best were the ones that stopped by and would talk to me about regular things other than stroke, all day everyday all everyone spoke about was stroke. And they'd say it so lightly as if having a stroke is like drinking a glass of water; my understanding of the word stroke is a lot different to theirs. When people have often used the words 'hard' or 'frustrating' it's a bit of a slap in the face, I don't feel you know the full meaning of the word until you have learnt to use your arm again after stroke. Those words just don't have enough weight in them for me.
My wife would bring me in a cooked dinner and my son so I could have a cuddle in bed most nights there. My mood would go up and down like a roller coaster. Being a twenty seven year old stroke victim in what seemed to be a nursing home for stroke patients was extremely depressing. I was asked by a social worker if I had managed to make any friends, I replied if you can find someone here less than a hundred years old I'll give it my best shot.
On the darkest days in rehab I liked to draw strength from my Nan, she had lost some people very close to her and has not had an easy life and has come out of it the most beautiful resilient woman I know. I figured if she can deal with the cards she was dealt and come out the way she has I can get through anything. I do think that it's not what happens to you that defines you but what you do about it. To recover from a stroke you need a huge amount of determination some people have it, some people don't, immediately after the stroke your paralyzed in a hospital bed so all you have is an attitude and it was my choice to either have a good attitude or a bad attitude. Fortunately I had a very committed wife and family to support me and keep me going in the right direction.
I'm not a religious person as I believe religion is a gift that I am yet to receive. But I like to think if this was a test, I'd like to say I passed.