My current unit has served me throughout my stroke recovery for the last 19 years. It has become a sanctuary, a place to recover from my constant need to ‘keep up’ with the world. However, over the years, as my support needs have changed, so too has the need to modify my home. 

Initially, I was so excited at the reality of living independently and not with my primary carers – my parents. I was ready to be independent in my own space and found the unit that met all of my needs. 

Only later did it become evident the HUGE need for supports inside my home that I need to live in this manner. I’m unsure if it was hope or denial, but I kept pretending that things would soon improve. I refused any aids in my new home, feeling that they would imply to my many informal supports that I had given up and accepted my limitations. Letting few formal supports into my environment was also so confronting. I reluctantly took their support but deep down resented them for it and convinced myself that when my deficits were resolved, I’d ween off this assistance.

“…Accepting any modifications to my home symbolised permanency and disability confinement, and suppressed any chance of hope. Those around me would assume I was no longer improving. I don’t think my therapists understood my state of mind, and often took my refusals personally…” 

Fast forward 19 years, I have gradually accepted my need for physical and emotional supports and many adaptations to my home. The walking frame I thought I definitely would have rid by now is a permanent companion. I have welcomed and hugely benefited from the many incredible supports in my home and now I see the need to make space for them.

However, even with the invitation for supports in my home, I’ve found myself in fear that I will fall and be without the appropriate equipment needed to help myself. It terrifies me that my home is not increasing my safety, but actually hindering it. 

With this realisation, it has mobilised me to search for my forever home. And I’m so excited to share, that even with all the considerations and deal breakers that exist for me, I have found it!

Emma standing outside her new home with her walking frame

It’s incredible how now that I have space for all my supports, I am feeling the huge reassurance that I won’t have to move again; my new home will accommodate my needs now and into the future. Not only does it lessen the weight on my life, but I love that it will also lessen the burden on my close family and friends’ lives. Not only is my home now a perfect place for me but there’s room for all the support equipment that I might need.

I confess to feeling absolutely terrified that in 15 years time I’ll find myself in a position that would almost force me into an environment that doesn’t suit my wishes and I foresee the burden I would place on everyone’s lives. 

Instead, I have been able to choose my forever home. I have booked the removalists, organised builders, engaged lawyers and selected furniture. There’s so much I can’t do, but so much I can – I love that.