Lightning bolt: How volunteering became part of my long-term self-directed rehab

After 5 weeks in hospital, and then visiting a Neurologist a few later, I was told yes I have had two strokes.

My mind was very confused, no speech therapy or rehabilitation nothing, I visited Outright Independent advocacy group for people with disabilities, back to the hospital about 6 months later for rehabilitation. My world was upside down because of the massive strokes that I had when I was 50. Communications were very difficult because I could not talk, walk, write, swim nothing and muscle problems. I was happy to try cleaning my teeth which was very slow but an achievement, but I could not do simple things like doing my buttons up, washing or hanging out my clothes my teeth became a helping tool.

I was given a chance of doing a Diploma of Art, through a cognitive online program from James Cook University Townsville. It was only to do be done in one year, I did Graduate, but I took five years because I could not manage more than one subject at a time, Brain just ache and ache, Excitement and congratulations to myself I had reached a massive goal.

Surprise, I was asked to go on “Outright Disability” as Secretary for their board meeting. It was a new start for me, but I could not say or write a sentence at the stage. I recorded everything and typed the meeting on my computer, it was not easy, but forward it to their President of the meeting. It closed down for about a year and then I was on the steering Committee again, Right in Actions began and it still going for vulnerable people with disabilities and NDIS reviews as Secretary again. Then again, I was asked to be Secretary for Cairns Tourism Awards for people with great customer Service, repeating the same as secretary again. Their beneficiary was the Royal Flying Doctor Service. The President of this meeting also was in charge of the Leukemia in Cairns. I ended up as an ambassador for them and The Spirit of Qld RFDS. This was fundraising. All this volunteering became my permanent Rehabilitation. At times my speech was very difficult. This was not just about my recovery, but it was also learning and perhaps it might be useful for others, it was a big challenge, but I achieved it. I did not care about money, work, just to get better and feel-good helping others as well. This to me was a BIG VICTORY, it felt like magic to be supported by all these people, it gave me a feeling these people were helping me through my stages, you need to keep focus on all your steps during this slow journey.

It is definitely my course and mental strategy of trying to keep everything together.

I could not afford to look at what I was before, or what I had lost as I wanted to be a strong person, I can be and how fortunate I am in control of my live these days, my journey now is positive, I still can get frustrated and there is so much one can share with others.

Sometimes I think about new changes in some training and education, to walk into some Stroke patients' shoes and listen to them. I cannot dwell on the past and I make sure it is not negative, but I have learnt in my brain to change it straight to positive.

When I wake up, I want to be grateful to ask myself what I can focus on some days, all stroke teams, workers, physio, Aphasia and Stroke foundation are also magic the way they can look and read our bodies and put us back together and save many lives.

A few times when plateau, my brain wanted to go down so I was quite depressed, irritable, moods, felt a burden to my family, repeat my words, almost suicidal but I would not let it get me down, yes, I did and reached out for help.

Please reach out if you need to a talk and be listen to, do not be afraid, get help and stay positive. It is needed to see the lights of a train coming g through tunnel.

About a year later I was very slowly getting to realise my life is never going to be the same. I was determined that I was going to get there eventually, everyone is different.

Told myself that I would get there, and get to the top of the ladder, but one thing I had was I had fatigue, so I learnt to listen to my body a day slept a lot during the day.

I really had a choice to focus on to get better or what I had gone through. At times it felt Like a toddler learning to talk learning everything to live again.

. Brain plateau happens at any time, and this is where I got more frustrated and some mental health problems. My attitude was something I could do by trying to stay positive.

I think a stroke is cruel and a very slow recovery. People these days assume everything is normal with me but it definitely not, you have to live with every day. At times it is hard, and I I hope it doesn’t happen again.

There is another REACTION by people when they walk away to the other side of road, they can ignore you and abandon you because you were different since you last saw them.

DO NOT get upset as I did as they do not know what to say.

I know I did not ask WHY I had the strokes, it not what happens to you, it is what you do about it. I used to have a wheelchair for a while, then a walker and now I do not need anything but all my resistant has gone I have to be careful that I do not fall.

Two of my saying are:

Lack of knowledge creates anxiety.

I work to live, now I live to give

Congratulate yourself and be happy when you get to your goal, all little goals and time you will achieve that big goal.

God Bless you all.