accepting change ain’t that bad, it just takes time


It has been a crazy couple of weeks and I haven’t really had the time to write an entry. Even now my head is swimming and all I want to do is sleep for a week. I have started a couple of entries but I haven’t been able to focus and they all seemed wishy-washy.

One entry was about my identity. As you may know, I have a chronic illness called Familial Dysautonomia. It didn’t start off as a disability, but rather I had issues with my blood pressure, my spine and fatigue. The condition is degenerative and manifests in different ways in every person; with me it affects my balance and walking. My walking started deteriorating during my teen years and eventually in my late twenties I had to get a walking frame.

Using a walking frame hit me hard and I remember the first day I got it. I decided to walk around the block near my house, to see whether or not I could make it, because for a while I hadn’t been able to. You may know I like to challenge myself and so, I took the challenge on with determination.

The walk took a while and I made plenty of stops. As my walking frame comes with a seat, I sat and took in the scenery while I caught my breath. The walk was tiring and hard but it was liberating at the same time. I had this sense of independence and freedom. No longer did I have to walk arm in arm with someone as I stressed about falling over and bringing them down with me. So yes, I was happy while I walked and smiled most of the way, but something clicked when I eventually made it home.

No longer could I deny my disability.

People were going to be able to see 100% that I had a disability. Until then I could hide it to an extent and still classify myself as “normal”. But walking with a frame meant that that wasn’t the truth any more. When I got home the crying began. It was uncontrollable and there was nothing my parents or my friends could do to fix it.

This happened around four years ago. At around the same time I started working at Yooralla. Suddenly I was immersed in the world of disability and I couldn’t get away from it both professionally or personally.

Over time I began to accept my new identity and I even started to embrace it. I began my blog and I put my disability out there. People were reading about my daily struggles with the frame, the falls, the tiredness and they were getting an insight into the world of disability. People were learning something from my blog and it felt good. I was proud of myself.

Then I turned to radio. It had been a secret wish of mine to be on radio and so I contacted a production company that specializes in disability. They had a position available for their radio show and I stepped in without any training. Suddenly I was on a monthly show, talking about disability and talking with co-hosts who both had a disability. It was scary at first but eventually I began to enjoy it and even began learning more about disability.

I began applying for courses in leadership training and my referees said that I was highly regarded in the disability sector. Organisations were asking me for information on the work that I do and for help with setting up their own programs. I was attending forums on disability and sexuality and I am on advisory committees with other members who also have disabilities.

I still have my old friends and my other interests and disability hasn’t consumed my world but it has enhanced it.

On Friday my radio show broadcasted live from Federation Square in recognition of International Day for People with a Disability. We interviewed paraolympians, short-statured basketball players and we had music played by people with intellectual disabilities. I saw clients and friends from my forums and committees and colleagues from work.It was a sunny, fun-filled morning and I felt like I was part of a community. 


5 thoughts on “accepting change ain’t that bad, it just takes time

  1. i think that the lesson to be learnt is that door open once you accept but truly accept your situation.
    you are a beacon.
    thank you.

  2. Hi Tully,
    another thaught provoking article. I am glad you wrote about your tears when you realised you were disabled. It is a very hard thing to come to terms with, and probably only experienced by those with a slowly progressive or acquired disability. I think it is the turning point in our lives, once we face the reality of our disability we can get on with our lives.
    You have changed so much in the four years I have known you, the world is now yours — enjoy it!

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