I write often about my life experiences-I do this because I want to make a difference, my job isn’t earth shattering, my reach isn’t far but I know how to communicate and I know how to listen. I hope that by sharing some of what I’ve lived this may in some small way help another person and then what I’ve lived will matter and so will I.
One area I’ve steered clear of is my disability. The reason is because I’m no longer hindered by it, I’ve grown out of the physical impacts-I had a weak bladder through childhood due to pressure and nerve damage which eased as I grew.
I was born with Spinabifida. This is me, my back;
The impacts on my every-day life are small, I don’t feel comfortable in a bikini, I’d never undress in front of someone I wasn’t completely intimate with. The largest impact was on the birth of my son. The choices; epidural free 52 hour labour or be under anaesthetic – not present – for his birth, I did it with gas and air. I did it, go me! But then I suffered horrendous panic attacks for months after, having gone through an episiotomy and ventouse delivery on gas and air. Would it have been easier without my scar? Yes. Did my Spinabifida make the experience harder? Yes. Did I ask the doctor at every opportunity and scan whether my baby’s spine was ok? Yes. But I don’t encounter the every day kicking that those struggling with disability do, I’m so, so fortunate.
After my surgery my mother was told I would be unlikely to walk, I walked, but late, and initially with difficulty, there was minor nerve damage. But now, almost 40 yrs on I’m here and ok, those early operations took their toll, hospitals frighten me, pain even more so, but I’m here, live and kicking.
I’ve re-shared this post because it’s national Spina Bifida and Hydrocephalus awareness week.
What prompted this post originally was the recent interactions on Twitter between many women from many backgrounds who I respect and care for. We all think we know a person, we all think we know what makes them tick. Well I don’t, I don’t know but I DO CARE. I care about each and every woman trying to survive. I may not always yell it loudly enough, but I really do have your back, and I hope you have mine, scars and all.