A friend of mine once asked me, what was the one thing about my aphasia that worry me the most.
That was a question that I thought was easy to answer, until I gave it some thought.
The easy answer is this: -
Being unable to find the right word in a conversation or writing etc.
Although: -
That is not the real question that needs to be answered.
The real question should be this: -
Does Aphasia give your self-confidence a beating or not???
Then, the next question is what are you going to do now???
Fight on or capitulate???
So, for whatever reason I decided to fight back.
Starting at the beginning, I had my stroke on the Wednesday, I was in North Shore Hospital, I found out that I have aphasia. I was having trouble speaking at all. My sentences were only three to five words. I still had a massive headache from the surgery to remove the blood clot from my brain. I was seeing only my family and a good friend. On the Sunday we had friends who we have known for many years come to see me, this was the first time that I experienced this, when I open my mouth, I hope that fuck that something would come out and it didn’t make me look stupid. I’m sure that looking and feeling stupid was the one thing that worrying me a most.
Then I spend two weeks in Ryde Rehab, where my speech therapy really started. It was then I realised that I spent far too much time in my youth playing solitaire with cards in steady of studying English. Then it was back to basic English like antonym and synonym as the way to help in finding words quickly. Actually, I did go back to a dictionary to check the meanings of antonym and synonym.
It was in early 2020, as COVID19, was starting to take shape. I left Ryde Rehab on 30 January 2020 with a phone number to Concord Hospital plus six phone numbers for speech therapists. We are given six weeks of outpatients for physical and speech therapy. I rang Concord Hospital they said that they were not taking patients for the next six to eight weeks. My wife talks to friends at the hospital, who believed that it would be a longer than eight weeks. After six weeks I rang again, and I was told maybe three or four months before they start taking new patients. We decided it was time to do it ourselves, the six weeks from Medicare, I saw our physio who starting zoom session for Pilates and then I need to ring and find a speech therapists, after some phone calls and I found my new speech therapist.
About this time, I notice while I was finding words, I felt like I was in a rail station looking for the right rail line to get to the right station. Except I was looking the right word to be insert in right the way and the right part of the conversation or something that I was writing. About this time, I was starting to wonder what would happen if I couldn’t find a word or worse I was blank, with nothing more to say.
My speech therapist gave me plenty of assignment to help with finding words either the same or different. I must admit in the initial stages of my stroke recovery and early with my speech therapy, I felt like a dumb kid at school, who hated English.
After about nine or maybe twelve months I realise that all the hard work was helping me to communicate better with others, we went away to see some singers in Newcastle. We started going away more which gave me more opportunities to speak with people.
I notice that my mindset was starting to change from negative to positive which help me a lot and it gave me some hope, that I was improving slowly.
I was still having a problem with my mind was racing most of the time trying to find a word. I still felt like I’m in railway station trying to find my way home or somewhere new, but I was trying to find the right word. Words flashing pass my eyes constantly, this was making my fatigue worse than ever before, to tell you the truth I was buggered.
The other thing was that I realise that people will understand about aphasia when I tell them about my aphasia, and I shouldn’t be embarrassed about having aphasia. For a while I was embarrassed about my aphasia mainly because I was worried about looking stupid when I could find a word.
About May 2021, our children decide to give us a surprise 60th birthday, because my wife and I are the same age, although I am 56 days older than her. It was at a local club, where we were meeting friends for a late lunch. Very quickly, my wife and I realised that we been had by our children again. I had no difficulties with noise and the conversation. It was the first time for a long time that I felt good in this type of situation.
In January, this year 2024 I went to a school reunion, which was not out 40th anniversary because we had that a few years before. We realise that we are getting older, and we are losing some of our friends. It was held in a pub. There was only two people other than me who knew that I had a stroke who was going to the event. I spent a lot of time explaining my stroke and my aphasia, and I had an exciting time. I got home to tell my wife all about it.
My wife realised that I have come to long way from when we started on this adventure.
Yes, my confidence was beaten up for a while, especially in the early stage of my stroke recovery. But as my speech therapist helped me with findings ways to find words quickly enough, I realise that I could be confident when I’m in a conversation with anyone.
This may be as good as it can get, which is far better than being scared shitless every time you open your mouth and hope the fuck that you can say something or anything, that doesn’t make me look stupid.
The other thing is my mindset, being positive has helped me immensely. I still see my speech therapist regularly, which is still especially useful to me. We are doing different type of work these days. I’m thankfully that one of my speech therapists convinced me that writing would also help me with my aphasia, although I don’t write a journal.
So yes, I fought for myself, mainly because one else would do the work for me.
I always tell myself: - “Aphasia is a language disorder that affects a person’s ability to communicate.” Also, that I did not become stupid overnight.
These days it’s my aphasia and my fatigue are the things that reminds me that I’m a stroke survivor and I will be one until the day than I die.
My thanks for reading this.
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