Julie Helen: 'My follow up with specialist was not what I expected'

I have a story to share that makes me feel proud, but also a little bit vulnerable.

I take pride in always being real about my life. Sometimes, I get sucked into a loop of trying to ignore that I have cerebral palsy and I just want to get on with my life. Other times, the flow of things necessitates that I seek help or intervention for my disability alongside all the other ordinary facets of my life of being a wife, mother, daughter, sister and friend.

Last December, I received a new wheelchair through disability services in the HSE. It was the first time in a decade I had got any equipment. I only engage with services when I really have to. I know the services are overstretched and understaffed and I don’t want to be taking services from someone who desperately needs them when I manage away.

There’s a difficulty in the concept of managing though. I don’t just want to manage day to day. I want to flourish and be the very best that I can be.

This time around in getting a wheelchair I was referred to the complex seating clinic and the chair that was recommended for me was one with a therapeutic back. This means that it has a particular shape that was made specifically for my back and it holds my back in a particular position. A therapeutic chair is new to me. It means it will work on my body, change it, and hopefully improve things in terms of pain and discomfort I experience.

When I initially got the chair, I found it hard to stay sitting in it and I felt sore. Then, after a little while, standing up and walking became harder because the twist in my back was changing.

I was quite scared and I quietly worked on figuring out how to walk again, trying to find a delicate balance that enables me to be upright. I didn’t say anything about it and because services are stretched, follow-ups were minimal. I had a follow-up just a couple of weeks ago, and the reaction was not something I expected. The seating specialist was extremely enthusiastic about how my back had improved. There had been a hump between my shoulder blades that has entirely corrected itself and when he touched me, I didn’t feel the pain I would have felt in the past. He said my whole spine was far less compressed, and he felt the improvement in the alignment of my hips as a result would most likely mean I would avoid surgery for many more years when I had been hurtling towards such a fate.

I trust this man because I happen to know him from our college days, and I know he is superb at what he does. He had a frank conversation with me that my wish to continue walking meant he was limited in the further improvements we could make in the tension in my legs. The little girl inside of me, who fought hard to take independent steps for the first time at the age of six, spoke up. I absolutely do not want to relinquish my ability to walk and stand, even if I have to compromise my comfort. Functionality, being able to do all the things I want and need to do is very important to me. The changes in my body were reinforced by a visit to the physiotherapist. She traced with her fingers along my spine and it felt so different to me. The months where my back was changing were gruelling but the benefits seem huge.