Stories & Achievements: Alan’s Story
Alan’s story: double dipping
““Alan swims most days at the Merewether Ocean Baths. Support workers have been telling me how this is an amazing energy boost for him and a great opportunity for him to connect socially with people in his community.””
In the mid 1980’s I was swimming, riding, playing squash and doing fun runs. My wife and I were raising four children and I was an operations supervisor at Port Waratah Coal Services. I was doing a house renovation in Merewether when the brain tumour turned up. Fortunately the job was near completion although I needed to get help to finish it off.
The tumour is one that I was apparently born with, called a Craniopharyngioma which occurs near the pituitary gland. Fortunately it was a non-cancerous. I’ve had five operations between 1989 and 2008 with four different neurosurgeons, the last one being the famous Charlie Teo. I now have frequent MRI’s to check that everything is ok.
“The result is that I’m basically blind in my left eye and have about 60% vision in my right eye.”
One of the effects was mood swings and changes which was difficult for my wife and the kids. My marriage came under lots of pressure and we no longer live together. Before the tumour I was a fairly placid sort of a person, and afterwards I became a bit more aggressive. Not physically but more a case of yelling and bad moods.
I went back to work briefly, but my memory was the thing that let me down. Being a shift supervisor I’d have lots of different information coming in. I would forget some things and that began to cause issues. Fortunately nothing major happened. For the company, safety was the main thing, and they were concerned because I was the person responsible for safety on site. So they offered me a redundancy package which I took.
I now take a lot of medication because the tumour affected the part of my brain that controls hormones. I take about 30 pills along with a daily injection with the help of my support workers. This helps to manage all the hormonal things that would normally happen.
I began with Headstart in 2012. Before that I didn’t have any support. My doctor said “I’ve heard of this rehab place on the street where I live.” A few phone calls later I was invited to go down to Headstart and take a look. I came back saying to myself “Give yourself an uppercut you stupid clot, you’ve got nothing to whinge or complain about compared to some of their clients.” It was good for me and gave me kick up the butt.
“Instead of sitting in the corner, saying “woe is me” it was good to see other people in similar sorts of situations and how they cope with things.”
Initially, a big issue for me was losing my license because of my loss of eyesight. I love my cars! To have my car taken from me was a big blow. Twelve years on and I’m mostly over it by now. I actually thought I’d be more devastated being unable to drive again, but the journey I was on made that blow easier to take.
Soon after beginning with Headstart I started helping with sessions an orthopaedic school teaching kids to swim because I love the water. I taught - or tried to teach – this one kid who was about 15 and had cerebral palsy really bad. I managed to teach him to breathe and to get his arms going.
“This boy thought he was Ian Thorpe. He thrashed and splashed and drank most of the water in the pool but in his mind he could swim. When I saw that I just melted. ”
I think the fact that I saw people far worse than myself who seemed happy made me think “well why can’t I be like that?” My condition was mainly eyesight related with some metabolic issues and energy and stuff like that. Just trying to teach that kid to swim was a wonderful thing and it helped put my own problems in perspective.
Teaching the swimming I could feel that my old supervisory skills were coming back. I’ve had a lot of training in management. People management theories apply whether you’re dealing with a labourer or a disabled person. If you have the right training tailored to that person you’ll see remarkable improvements.
Once a week I go to nearby Merewether Ocean Baths for a pool session with Barry who is a very good motivator. He’s great at pepping me up, because some days I’m not feeling up to it and I often get distracted from the task at hand. We’ll do some swimming laps and walking cross the pool. Besides the aerobic fitness it’s much easier on the body than thumping along a path running. It’s refreshing and a super way to start the day! Then after our swim Barry and I head up to the café for a catch up with some friends, some of which are Headstart people.
I’ve done some archery which was something I really enjoyed. I’ve also done woodturning but I had to give that up because of my eyesight as it was potentially dangerous to myself and others should I lose control of a chisel or lathe.
I’ve always loved photography and enjoyed Eddie Cross’s photographic courses that we do at Headstart. We all jump into one of the mini buses and go to a specific location. Eddie coaches everyone as they photograph a scene or some objects on manual focus. We might spend an hour or two taking the photos, then the following weeks Eddie goes through everybody’s shots and talks us through the different elements. Eddie does some sorting, cropping and adjusting and in the end there are some wonderful shots! Eddie makes a big deal and helps people feel good. We’ve even had public exhibitions and acknowledge the photographer’s various disabilities. Eddie deserves a medal for what he’s done here!
“Besides being a great photographer Eddie is probably one of the best teachers of a subject I’ve ever seen, considering the different disabilities of his students. ”
My goal is mainly to get back to where I was before my tumour. I know that I’ll probably never get there, but I can get closer and closer. Somebody said to me the other day ‘your memory is a bit better’, and I was only thinking the same thing myself.
I’m not necessarily saying that Headstart is responsible for this, but I’m sure it helps that I’m thinking about things all the time and not sitting at home in a room. If you’re out there, thinking about your timetable and talking to people then your memory has got to get better. That’s what I believe.
I spend a lot of time doing crosswords with the help of my magnifier. It’s very helpful as I don’t have any short vision. I do crosswords with the arrow word clues and that makes it a lot easier particulary with my short memory loss. I enjoy doing at least one crossword a week and I find it very uplifting. Exercising my mind is just as important as exercising my body.
“Something I have my name down at Headstart for is sailing at Sailability. I used to do a fair bit of sailing I in my teenage years, so I thought I might have a go at that.”
If you’re a person sitting at home there twiddling your thumbs thinking ‘I’ve got a disability and I can’t do anything.’ Get out there. If you need help get out there with Headstart for sure. They help with all sorts of all levels of ability and disability.”
