Not many of you know this about me, but it is by no means something that I hide. I was born with lipomyelomeningocele, one of a number of forms of Spina Bifida that requires serious surgery in the early years of life. In layman terms, I was born with my spine outside my backbone. My parents were told there was a low chance of me walking, but when I did, I was then told I would be in a wheelchair by age 13. Most of you know I am still on my feet to this point. But only just using crutches to walk at the moment but when the pools open again after lockdown I am intending to be hands free.
I am a proud wearer of my scars. Proud of what I have achieved, and proud of the family and friends that support me with my disability. This is very personal for me, so I hope you take the time to read.
This month we celebrate National Spina Bifida Awareness Month, and people might ask ‘why is this something a digital education consulting company might be promoting?’ Well, having Spina Bifida is one of the reasons why we started this company, and one of many reasons why we employ others who have a disability and/or have other needs that take priority without having to compromise a career and finding one’s true worth.
I was one of the lucky ones, I was able to live a pretty normal life (as I see it, given the Rolodex of doctors I have had all my life). Then I came to my 30’s. It was here I realised I needed to seek more specialist help; really consider what my future was going to look like if I didn’t plan and do something proactive for myself. I had some time, and a lot of ambition which led me to travel to Melbourne from my home in regional Victoria every day to establish a career and reputation as an e-learning professional, but slowly, the fatigue and exhaustion set it.
Finally, I decided to take the plunge with my amazing brother Alex, and with the support of my wonderful partner Liam, to build a business that could accommodate our personal needs, and they both helped me chase my desire to be a specialist and fulfil that spark in my heart. Working from home and within hours that worked around my medical needs was the priority, even if I was still working 70 hours a week. Perfectionism isn’t a great attribute when you have limited capabilities, and this was another hurdle I needed to get over. When you have a disability, sometimes you feel the need to make sure people think you are worth the air you breathe.
Spina Bifida is one majorly misunderstood condition, it takes many shapes and forms, and everyone deals with it differently. Unfortunately, this condition is something you have for your entire life and it often comes with other conditions you need to manage such as depression and anxiety. Scoliosis is also common, and pain and numbness are a constant, for me anyway. These are only some of the issues I have had to work through in my lifetime, others with this condition may have these, or may have others. I do get a laugh from people when I say I used to get in the shower with a sock on because I didn’t feel it on my foot. Now I look every day to check both feet, because I can’t feel them anymore, but at least I can get up onto them. It is truly funny what you appreciate, but as I said, I do feel like I am fortunate as many with my condition need to use a wheelchair.
Many people born with Spina Bifida or even many other conditions never know anything different, so they don’t like it when you feel sorry for them. They do like it when you celebrate what they are good at, able bodied or not. So, do those of us with Spina Bifida a favour, don’t write us off. Celebrate our hearts, our minds, our resilience and our determination. Read up, find out about us, and know that we can be great employees, great employers and great entrepreneurs.
Image by Christopher Paul High, Unsplash
