Me

I was born to Barb and Dave, their third child. No scans back in them days so they didn’t know they were expecting a baby with Spina Bifida (lipomyelomeningocele if you wanna be fancy) SB is a neuro tube defect. Basically the nerves and part of my spinal cord live quite tangled up in a lump on my lower back.

I hit everything developmentally as I should, a little later for sure but I crawled and walked just like any other baby. At the age of 3 I had surgery to make the lump smaller, then that was it until I hit my teens.

From the age of 12-23 I began to suffer with ulcers on my feet. We realised I had 80% decreased sensation below the waist. Although I could still walk, the ulcers would take forever to heal. Often they would become infected (especially when I moved out and decided rest was for losers) I had to have several toes amputated plus other bones from my feet. I’ve also broken them a few times and not known so they’ve healed all kinds of funky. I also got bladder testing at 16 and have self catheterised ever since.

Once I had my first baby when I was 25 I really started taking care of myself. I would rest when I needed to, so have avoided getting anything else chopped off.

Over the last six years my mobility has decreased though from needing to use a walking stick, then two crutches and now I hobble about at home and use a wheelchair or mobility scooter when out and about.

I asked the other day if you had the power to change things so you were never born disabled would you? My answer would be no. My Spina Bifida is part of me and I wouldn’t be me without it. It’s led me to meeting some amazing people and develop a really strong empathy and filth sense of humour. It’s my life challenge. The thing I learn and grow the most from. Although I have days that are painful and frustrating and sad (doesn’t everyone?) I also see the joy in my uniqueness. I’m forever proud to be disabled.