Over the first few days, word of my condition spread far and wide. A special friend, Jen, set up a support page on Facebook in my honour. It not only served as a place for people to leave me well-wishes and words of support, but also a place where friends could find information on my condition. This reduced the number of phone calls my family needed to deal with. Dad or Ali would read all the messages to me every couple of days – they ranged from prayers to cricket scores, and of course smut (yes Lisa, I’m talking about you). It was incredible how comforting those messages were. Suddenly I didn’t feel so far away from everyone. I received cards from close friends, friends I had lost touch with, a girl I played high school volleyball with 20 years earlier, co-workers from Logan Hospital etc. All those words of encouragement gave me a little more determination to recover.
After a week or so, I started experiencing twitching in my legs. I had no control over it. Nurses and family were convinced that I was making it happen. They were so excited. I would try and convince them that in fact I wasn’t doing it voluntarily, but they wouldn’t believe me! I guess they needed some hope to hold on to. I’m not sure why I felt the need to take that hope away from them. I think I felt that letting them believe I was progressing, made me feel that they were minimizing my situation. I think it was a little cry for help – ‘no things aren’t improving’. Then again maybe I was just having a tantrum.
The brain stem is also involved in temperature control. (The brain stem is involved in nearly everything. So, if you’re going to have a stroke, steer away from a brain stem one!) I began to feel extremely hot. So hot that it became distressing. My family found the ICU ice machine. They would get a bowl, fill it with ice and water, and pat me down with icy cold cloths. There were nights they would come in wearing jumpers and I would be asking for a cold wash. I felt extremely hot so often, that we decided to give it a 3 blink shortcut.
As my body started to recover from the initial trauma, I became aware that my head felt fuzzy. I was extremely drowsy and fighting against it all the time. I asked Steve what they were giving me that could be causing it. Valium he said. The next time my doctor came around, I asked him to take me off it. I told him while he was at it, he could take me off any drugs no longer deemed necessary. I don’t cope well with medication. My body was completely useless – I at least wanted control of my mind.
Over the next week, my head cleared up. I now felt completely normal (well as normal as I get). The downside to that of course was that I became more uncomfortable and distressed. I was much more unsettled during the nights. Many family journal entries referred to bad nights. I also started to crave more personal time with people as my ability to focus on conversations improved.
Journal entry by Ali:
“I was going to go home earlier, but Steph wanted me to stay. She had been quite awake. I could tell she was desperate to talk. I told her how much I love her, how much I need her. There are so many things we have planned to do together. I am sure she was crying. I could see tears, especially in her left eye.”
I can’t remember exactly when, but early on my beautiful friend Lisa came to visit. Lisa probably knows me better than anyone. Lisa sees the good, the bad and the ugly, and loves me anyway. The day I suffered my stroke I cried a lot. After that I had managed to stay pretty strong. I felt like I needed to be for those around me. When seeing many extended family members and friends for the first time, I would not cry. It was hard enough for people to see me like that, without being exposed to the pain in my heart. As soon as Lisa walked through that door our eyes locked. That was it. I became a blubbering mess. I can still remember Lisa coming to me, holding my head, stroking my face, and letting me cry. I don’t know what it is about my friendship with Lisa that had that affect. I could read the pain and fear in her eyes, and knew she saw mine. Was it that I knew she was strong enough to cope? Was it that I knew I couldn’t hide it from her anyway? I don’t know, but I will never forget that hug.
With no improvement in my jaw, oral hygiene was becoming a problem. It was decided to try Botox in the over-active muscles keeping my jaw shut. If we could paralyse those muscles, my jaw would relax, allowing my mouth to be opened.
After 6 days in ICU came the first miracle. Actually the second – the first miracle was that I was still alive. I moved my head. Only by a few centimetres, but it moved. One of my doctors, a gorgeous neurology registrar, was there to see it. I don’t remember there being much excitement or celebration over this event. Maybe we were being cautious, I can’t remember.
Very early on in my admission, we were introduced to the hospital’s Stroke Liason Nurse. Dawn is a tiny little lady, but looks can be deceiving. Dawn is a pocket rocket. She quickly became a significant support person for my family. In a medical world where I was often reminded of my ‘bleak’ prognosis, Dawn was our little ray of sunshine. She arrived day after day with books, and stories of people that beat the odds. She would give us pep talks on our dark days and remind us to ignore all medical opinions on my chance of recovery. She believes in the power of the human spirit.
“We spoke to Dawn, the stroke liaison. She told us about another young patient. She could only blink for 13 weeks, and within a year could walk. There is hope and we have to be patient. Miracles happen everyday. We just need for that miracle to be us. Steph will be the one writing the book about winning the battle. We need her to understand that in the end we will follow through with her wishes. But it is too early to give up. Katie said to me today. ” I hope mummy doesn’t give up.
Ali took the kids to the hospital chapel. Ali is not a Christian herself, so I was extremely thankful she thought to do it. They all said a prayer for me and lit a candle. I knew how much this would mean to the kids, particularly Katie.
A dear friend of mine Deb, who had walked alongside me on my Christian journey, contacted the hospital’s chaplain to ask if he would visit me. In the frightening world that surrounded me, quiet time with a priest felt so comforting.
A speech pathologist came to see me regarding communication. She gave us an alphabet board which she hoped would make communication quicker. This brings me to yet another complication caused by my stroke. While I could move my eyes up and down, I could not move them from side to side. This meant that I could not read the letters on the alphabet board.
The complication with my eyesight also affected my ability to really see my surroundings. I could not picture where it was that I was lying 24 hours a day. There were times I was sure I was in a room with rows and rows of beds with other patients all around me. Was it a dream, a hallucination? I will never know.
So my days started rolling into one another. I would long for the nights to come so I would be given a sleeping tablet, and hope to drift off to sleep and find some peace. At the same time, if I didn’t sleep well, the nights dragged on bringing with them fear, pain, loneliness, hallucinations …. the list goes on. I was still surrounded by people I loved 24 hours a day, but there were still times I felt so alone.