All this motivational quackery was rubbish. My journey of a thousand miles was never going to begin with this step, and it wasn’t going to head straight up a flight of stairs either. Surely, there was a lift? Yet, I couldn’t bring myself to ask. Twenty-five years young with the rusty joints of an eighty year old, I was done explaining. I’d shut shop. It was much easier to stay home. Yet, that wasn’t a luxury I could afford. Lingering between the lines of disability and wellness, I had to work. If only I had the wings to soar….
….
For those of you who’ve known me for awhile, I live with some chronic health and disability issues. When I was 25, I was diagnosed with hydrocephalus and had brain surgery to insert a shunt. My road to recovery felt like it was straight up the side of Everest without any safety equipment or assistance whatsoever, even though I was not alone. I really had comprehensive and loving support from my family friends and particularly my OT at Mt Wilga, who really helped me get through this incredibly hellish experience. Yet, I was the only one who could walk in my shoes. I was the only one who truly knew what it was like to put one foot after the other. I still had a job when I was going through that and yet my return to work date kept getting put back and their were complications. The valve of the shunt malfunctioned and I needed further surgery, which I really didn’t expect to survive. By this stage, returning to work seemed hopeless. My relationship had all but ended and it was a bloody hard slog. Yet, through all of that I always saw myself as a career woman. Work was very important to me. I ended up getting a part-time job and then landed what seemed to be my dream job in an advertising agency but the hours were very long and it was very stressful and one night I collapsed at Central Station from sheer exhaustion. I had to slow things down. Find a new path. One that wasn’t quite so steep and allowed me to heal. This was a huge life lesson for me and I clearly remember being told that I was a “human being and not a human doing”. I have a lot of adjustment to do and that is ongoing.
I would like to take this opportunity to raise awareness of the kinds of barriers people face when it comes to returning to work or finding a job when they have a disability, health issue or are just battling with life. How can we make their path a little bit easier? How can we reduce the load? What are we doing as a community to make their battle worse? Indeed, the finger of blame falls too quickly on the survivor instead of a helping hand.
Lecture over.
This has been another contribution to Friday Fictioneers hosted by Rochelle Wishoff-Fields. PHOTO PROMPT © Jilly Funell
Best wishes,
Rowena
Beyond the Flow 
Tough post to read so I guess hard to write. You should look at your ‘travel experience and see if you can’t turn it to something for the latest rodeo comp.. at the Carrot Ranch. Have you seen it?
Thanks for sharing Rowena. A powerful message. Here’s to your success on your journey.
Thanks, Geoff. I did see it but have had so much going through my head lately that I haven’t come back to it. Will go back and have another look. Btw did you see my tour of Sydney Uni? Here’s a link: https://beyondtheflow.wordpress.com/2018/10/18/sydney-university-retracing-my-footprints/ It was so good to go back.
Best wishes,
Ro
You’ve written a powerful story, Rowena. It’s opened my eyes to the personal experience some people suffer as a result of their disability. Well done.
So very well said Rowena. You might recall that I had my own quick fly-by with the whole disability, surgery, medical leave, recovery and return to work process. I was struck several times at my own good fortune, because my situation had a dependable fix, my surgery was a quick one&done affair with a single overnight at the hospital, then medical leave was only 2 rather than the predicted 3 months.
Returning to work, I found myself easily tired, distracted and less than interested in what needed to be done.
But I well recall that for all I experienced, I always saw great progress compared to so many others around me. I don’t think I qualify as much of a survivor as I do now an experienced observer. I got a glimpse of what disability can do to a person’s life.
While I remain a believer in God, I really dislike seeing so many people in distress and there are days when my promises of prayer feel so weak. Prayer should not leave one feeling powerless against calamity, but here we often stand. I’m working on this and had not forgotten your history. You influenced my arrival to the world of blogging because yours was one of the first I came across and I saw an earlier description of your story. You later showed yourself to be a peer restless mind with a great spread of interests and ability to share via words.
I do not pretend to understand the full impact of your situation, but sense that you are up to it and will likely be found leading others in how to survive and even prosper against such calamities.
I hope I’m right and that blessings are coming your way soon.
Really well written, both story and testimony. I can understand a bit as I couldn’t return to work after my last surgery. Too many stairs indeed.
That was tough to read Rowena. Hats off to you, I know I would never have had the kind of courage that you’ve displayed in facing all these challenges head-on.
I think we are more likely to help as individuals than we are as communities and sadly, as a governmental entity, we are least likely to help. It’s a sad state, and I think it puts more pressure on us as individuals. Maybe we can turn things around. Kudos to you for getting through the challenge (at least facing it) and for taking time to think of others. Good luck to you as you move forward (I know you will).
Thanks very much. These sort of disasters get thrust upon you and most of the time you just have to get on with it. I have had some very dark times but there was always someone to live for…for parents, my husband and kids. I have also had some incredible friends who’ve got behind me and Geoff’s family. I had a very strong sense of who I was and being someone else wasn’t an option. It’s been hard to keep up that same fire as time’s gone by and my priorities have changed and I haven’t been able to engage in paid work. Yet, I’m making a valuable contribution through my blog and still work pretty hard on my writing and research projects. Am thinking about how to edge my work back into the workforce.
Sorry you couldn’t return to work. It’s really tough that happens to too many people. The NSW govt has only just put a lift in for people to access the Sydney Harbour Bridge instead of walking up a pretty steep flight of stairs. This was done for the Invictus Games. It ‘s only taken 88 years.
Best wishes,
Rowena
Thank you so much, Gary. You might not see it in yourself at times, but you have a great gift of encouragement and part of that is also acknowledging our struggles. I share your concerns about prayer and I also get a bit frustrated when people say they’ll pray for me when a bit of hands on help would help. That said, I was reading Psalms today and these verses were out on the cliff face wrestling with hardship and disappointment and so real and then realizing the goodness of God etc. The awful situations people face are difficult to fathom but Jesus also suffered.
I have also come to appreciate that humans seems to need a degree of struggle and when it’s not coming from outside, they often create it themselves. I took up the violin and pushed myself to do my Preliminary exam and I was so stressed and I realized I’d done it to myself. I haven’t done another exam. However, I notice people doing all sorts of things to push themselves way beyond their limits.
It’s been my goal really ever since I was diagnosed with the hydrocephalus to write my story do motivational speaking and help others. I’ve given a few speeches and posted on the blog but do need to move forward with that. Thank you so much for the encouragement.
I’m glad I was able to encourage your blogging. I had some people really encourage me at the outset and it made such a difference.
On that note, I’d better keep moving.
Best wishes,
Ro
Thanks, Penny. Raising awareness is a slow process but we’re slowly making progress. It also helps our cause that parents with prams experience much the same difficulties and that attracts considerable support.
Best wishes,
Rowena
Thanks very much, Iain. I have felt very encouraged by all very positive responses to this piece. I can end up in a bit of a bubble here, although my kids are pretty busy and they help extend me.
It;s quite funny because I l am really quite retro type person and was recently reading 19th Century Australia short story writer, Henry Lawson. That weekend my daughter was an in contemporary dance number and the choreography was very much now and I felt like I’d jumped in a time machine to get from one to the other. I am now reading David Mitchell’s Slade House and much more in the present. Have you read any of his? This one is apparently shorter than his others but was a New York Times best seller and I am really enjoying it.
Thanks very much, Dan. I am now finding that many of my friends are joining me now that I’m almost 50 and I’ve been doing a lot better lately, which has been an absolute surprise.
You find that many people who go through a trauma want to do something to help prevent other people from going through the same thing or to minimise their pain. I read about parents who donated their six year old son’s organs because they didn’t want another family to go through what they were experiencing. I am constantly amazed at the good in some people and the complete reverse in others.
Best wishes,
Rowena
Yep, I’m sure I liked it! Sometimes those returns can be flat but it’s great when they live up to hope
I haven’t read any of his – another one to add to the list!
I’m right there with you. Haven’t been able to get, let alone keep, a job since my head injury. Thank you for bringing these issues to light.
Well done story, Rowena.
I am so sorry you had so many challenges and send you best wishes that life is easier now…
This was a very powerful piece. I wish you all the best.
It is hard to imagine all the difficulties, overcome everyday, by those with significant physical or mental challenges. Things we take for granted as normal can become insurmountable obstacles. Thanks for being a voice for them, and making the point that to live fully, not to motivate others, is what disabled people really want.
Thanks very much Andypop. You’ve nailed it on the head…living fully!
Thank you very much, Jo.
A passionate story straight from the heart and a testament to your courage Rowena.
I earned my second chance at life when I was operated upon as a child, otherwise with my condition I probably wouldn’t have made it past twenty. But I was fortunate that I didn’t have debilitating pain or acute physical suffering, just not allowed physical activities like other kids. But I made up for it as a teenager and had a fairly active lifestyle. Which is why I feel that the greatest gift a person can have is just being healthy and active. I think I truly understand the saying ‘health is wealth’.
I understand. I’m a lot older than 25, but have been dealing with severe pain for longer than I care to count. I look normal, really, but aging has been a benefit as far as people understanding what’s really going on inside my creaky body where no one else can see 🙂 Lots of invisible conditions out there these days. Take nothing for granted.
I think that there are many good people trying to make a difference, but there are also to many who seem unwilling to see the need.
I appreciated your story post and then your own story which is amazing. What shone out for me is your way with words and complete lack of self-pity. I am humbled reading of your experiences and wish you well. So glad that you were able to discover that we are human beings not human doings, a very interesting point.
Sorry to hear this, your post is so well written it has a real punch to it. I hope things keep getting better for you.
Thanks very much, Subroto. Sorry to hear about your health hurdle but such a relief that something could be done and you’ve been given this second wind. I’m with you that “health is wealth” and just need to push myself a bit harder to be more consistent with my exercise.
Thanks so much, Michael. I’m feeling quietly confident about the future.
Best wishes,
Rowena
Thank you so much for sharing your story. A very powerful piece. Sending you lots of good wishes for the future.
Thanks very much, Lisa.