Overall, my disability is getting tougher.
I woke up on a rainy Sunday morning down at my parents’ beach house. I love going down there for a break from life in the city and it really rejuvenates me.
For this visit though, the reason we went down there was to watch my nieces rowing regatta on the river that way.
My parents realised that I didn’t have my walking frame with me as it didn’t fit in the car down to the beach, it was cold and raining. As I didn’t have my wheels, they would need to walk with me. Reluctantly, they told me that it was too hard and wasn’t going to happen. I was gutted. Determined to go, I selfishly told them that they could drop me off in the rain without my walking frame and I’d crawl along the river if I had to! I was going to see her race. Even if it was only two minutes.
My parents, being the amazing people they are, agreed to withstand the awful weather and we went. I was so relieved but also felt so guilty for making them attend. It was miserable. But without complaining, they walked me along the river in the cold and rain so I could watch my niece go by for a few seconds.
It really hit me at that moment the toll my disability takes on other people who support me, and how it’s getting harder for me and them. The sensory overload of the cold and rain, the ground being wet and slippery for us all and my mum using all of her strength to hold me up; it all added up.
Although I loved seeing my niece race and glad I did, I felt the burden it put on my parents in helping me in that experience. I feel selfish in having these experiences when I see the toll it takes on those around me to enable me to be there. It was only because of their support that I was able to attend.
It makes me concerned about my future, when they aren’t able to support me in the ways they are now. That day is getting closer and closer. I ask myself “How will I support myself when they’re not around?” I have an amazing network, but it scares me to think of the isolation I might feel when they’re not here anymore.
Perhaps to others, seeing a few minutes of a rowing race in the rain isn’t worth the huge sacrifice, but to me, it is absolutely worth it. However, I do wonder if it is worth the effects it has on others around me. It would have been so much more comfortable if I’d decided not to go – for myself and my parents.
The opportunities I have around me are always so great, but I also need to consider my supports and their experience with me because it’s becoming a lot harder. When making choices, their comfort as my support needs to be a factor in my decision.
I spoke to my sister later about the race. She said: “Em, had I known you were coming without your frame, I could have organised chairs for you all!”. There was an easier solution for everyone had I thought of my parents experience as well and planned ahead. I wanted to be spontaneous, but had I planned a little more, this experience could have been more enjoyable, comfortable and easier for everyone.
How can you set yourself and your supports up for success?
What conversations enable you all to be on the same page about expectations of an event and ways it can be more comfortable for everyone?