Head down, bum up...

I am 9 years post stroke and I am still looking for ways to be able to function better - physically, mentally and emotionally. I feel bad I haven’t posted here for awhile - so this is a quick life and recovery update if people are interested.

Mainly, I haven’t posted because I was pretty busy with parenting - especially our baby (Charlie) and our other kids - therapy, few public speaking gigs, volunteering in the community and taking part in a stroke codesign trials - but as well, I was happy to have a break from using the computer (and social media) after doing the Stroke of Luck podcast early last year. While the podcast was really amazing and productive, it involves lots of computer work and the detriment of my body. Eg. My semi-paralysis on my right side means I can’t stay still for long periods of time because of the spasticity of my arms and legs. So last year and this year I was doing lots of ‘capacity building’ (aka therapy). Eg. neuro physio two times a week, neuro Pilates, interval running training, gym, OT weekly and as well speech therapy biweekly - in fact, more recently I am working on a new project with my speech therapist – but stay tuned for this!

Luckily after nine years of diligent, repetitious efforts my life is functioning relatively well and I am still improving, so after the podcast I was looking for something else to do – a job! Pre-Covid I was enjoying telling my story, advocating about stroke using my public speaking. During Covid I delivered few speeches/public speaking opportunities online – but I find this less enjoyable – so hopefully I can resume public speaking face to face now. Promoting myself is definitely not my forte. Whilst my Covid/lockdown experience was ok and I can't complain - compared with other people and small businesses who are hit hard - but I am confident that I will continue as I am definitely keen to continue it. Enter my shameless plug: www.iampaulfink.com.au/public-speaking.

Besides public speaking, I was thinking about finding other work as well. I feel I am capable of both. My volunteering is great and ongoing and it could be a stepping stone to paid work. I actually I have been looking for job opportunities - part-time job, so I can continue with ongoing therapy - for a while especially last year – but after seeing a surgeon who said I need surgery on my foot has meant I have held off, because I know I will be out of action for at least 6 weeks (or maybe longer). This surgery needs 6-12 months of rehab work also. I will write a blog on this surgery very soon because it is a big deal for me and my family - it will be August this year.

I want to work because I think I will feel more purposeful, fulfilled and satisfied when I am contributing to my family and in society in general. As well, I feel my brain will benefit a lot from working and using real life experiences. I like being busy and I am always keen to progress with life, but I am conscious that I’m pretty lucky that not having a job has helped me to be able to see my kids a lot - it is a blessing. Who knows - maybe if I have a job I will feel frustrated because I don’t see my kids as much - (maybe I suffer from greener syndrome!!!) but I think my kids will be very excited to finally tell them that dad found a job too! Not working for over 9 years, I sometimes miss the camaraderie of workmates and meeting people.

I had a few job interviews last year and I just missed out. Such is life however missing out on jobs is a dent of the ego somewhat of my self esteem. The interviews were a bit daunting, especially with my aphasia. If I am struggling to understand the interview questions, I may not answer confidently. I feel that I understand 80% of stuff - so it is a good thing - but loud noise, phone calls and group conversations are still an issue for me . Most employers (and human beings) are not mind-readers, so lacking understanding is one of the hidden disabilities faced by stroke survivors. Even though I missed out on the interviews (and on a few occasions I was advanced by a second interview), like the podcast, it was great for brain training and good practice for my aphasia. And my kids were actually very excited about the prospect of seeing me working and conversely they were sad to miss out. Our family shares our highs and lows together.

Deciding what area I want to work has always been difficult, even pre-stroke. I was working in IT for sports companies – it was good and challenging, but I always lacked a 'perfect role' for me. I’m not sure if I want to return to this post-stroke but I am open-minded to all job opportunities. I don’t know what my capabilities are now – so I am put off by words in position descriptions like “needs excellent written or verbal communication skills”. My verbal communication is improving but I still struggle a lot with writing. I use strategies to overcome my weaknesses for writing eg. speech-to-text technology - and thank goodness these tools are available in the modern world.

I am also very lucky that my stroke did not change my personality and I have high standards for myself and with the goal of being “normal” and ‘doing normal things’ – part of why I want a job – but I accept and realise that my life isn’t “normal”. An example of this is that I chose a trike over a recumbent bike, because it felt more “normal” to be upright. And like finding jobs or professions, I need to reconcile that my post-stroke life is different and some jobs are not suitable for me now and or forever - and actually sometimes I like being different. I am realistic and optimistic in life and I don’t really dwell on the negatives. I'd love to captain Melbourne Football Club, or the Australian men’s cricket team, however obviously that will never happen but I am very confident that I’ll find a purpose for me in the workplace in the future.

I understand the reality of finding a job - wrongly or rightly - I am ‘up against it’ being disabled now because if I apply for a job and ‘Joe Blow’ applies too with the same skills and qualifications, there is a good chance that the employer will choose Joe not me. Listening to Graeme Innes [former Australian Disability Discrimination Commissioner] my Stroke of Luck podcast, he said that “the biggest area that we face people with disabilities is the community attitude barrier”. Graeme said that it is “30% differential in jobs of successful people with disability - so we are employed at a rate that is 30% percent lower than the general population.” and sadly “… haven't managed to change that employment figure one one bit in the last 30 years”.

Even though this figure is frustrating to me and other people that are disabled, I was interested by Graeme‘s words - he said “…if we stop assuming about people with disabilities, and reducing the opportunities we give people with disabilities to participate in the community, we will as a community be very surprised at the level of participation that we get from people with disabilities.” Not sure that I agree fully with him but he has a good point and hopefully my participation or output of work will be very beneficial in the work future.

It is true that stroke doesn’t affect intelligence, but realistically I cannot do a lot of things that were easy pre-stroke. It is definitely disheartening that I can’t help my kids with their maths homework or can’t go camping with them without some support. I accept this as my reality - and yes, it sucks - but Graeme is right - it is all about attitudes.

Sometimes it is a bad thing to compare pre-and post life stroke, and trying to regain the pre-stroke life as much as possible, but I feel it is a good thing for me. ‘Aiming high’ and a positive mindset has allowed me to improve greatly and hopefully this will steer me toward finding a job after my surgery. In the meantime I will continue to work hard or ‘head down bum up’ and strive for better days for me and my family.