Atapo’s Story

I used to think it would have been easier if I’d had an accident and knew exactly what was going to happen to me. When I was diagnosed with neurofibromatosis (NF), I didn’t know what to expect. Back then, if you looked NF up in a medical dictionary you wouldn’t find more than a small paragraph.

NF is a genetic neurological disorder that began rearing its head during puberty. I spent my childhood running around and playing sports, but as I entered university I found it difficult to walk long distances. By my early 20s, I was in a wheelchair. I’d been working towards a medical degree, in total denial of what was happening to me. I would force myself up and out the door to class, but eventually I couldn’t ignore how quickly my disability was progressing. I thought to myself, “Stuff it! Life’s too short” and lead myself down a different path.

Although I didn’t become a doctor like I’d planned, my academic background has opened countless doors in the health and disability fields. I’ve worked with tonnes of allied health professionals, medical staff, CEOs, and hospital boards throughout my career.

Unfortunately, my condition has deteriorated a lot in the last 10 years, to the point where I can no longer drive because the steering system is too heavy for me. Through it all I’ve had my carer, Robyn, by my side. She and I are a bit like Thelma and Louise. Robyn and I met in New Zealand, and when I decided to move to Australia for better healthcare she joined me. We even played wheelchair rugby together. I was the second female player in Australia to represent New Zealand, and Robyn was a referee and helped on the sidelines with repair maintenance. We really had fun with that.

When we arrived in Australia, Robyn qualified as a senior citizen and moved into a residential aged care facility. I, on the other hand, had nowhere to live due to my disability so I moved in with her. The unit was small but accessible so I set myself up in the lounge room. What was meant to be a short-term stay turned into more than three years. As I became increasingly unwell and Robyn could no longer lift me on her own, I spent most of my days in bed. We both recognized this setup wasn’t working; the space was too small and no longer safe.

Then Ability SDA came along.

Being in my Ability SDA apartment—my forever home—feels surreal. It’s perfect for me. I’m secure, I have control, and I make the choices I want to make. The change in me since moving in is incredible. I get emotional just thinking about it. Without this opportunity, my prognosis was maybe another two to three years before I would have been resigned to a rest home. Here, I’ve regained my independence.

Robyn is still very much a part of my care team, but we’ve welcomed several new carers and they’ve been great. We all agree the space works so well: the doors and hallways are wider, there’s enough room and easy access in the bathroom, having a SIL team connected to the building gives me peace of mind overnight, and I have a big, comfortable bedroom to call my own. The Assistive Technology is amazing, too. I tell the lights to come on or the doors to open and they do! Robyn says she loves coming to work and seeing me supported in this way. I imagine it’s a difficult experience for support workers, too, when the people they care for are struggling in spaces that don’t suit their needs. She’s genuinely happy knowing I’m able to do many things for and by myself now.

Of all the many features in my apartment, having the ceiling hoist is a game changer. The portable ones take up so much space; they’re a constant physical reminder of all the things you can’t do. But above all, it’s the community that has made this experience what it is. My social life here is off the charts! We share lots of laughs together, and when the rugby is on I’ll have upwards of six wheelchairs in my place. From fishing trips to dinner parties, it’s a real hive of activity.

Before I moved in, I had a lot of self-doubt. Now that I’m settled, though, it’s not a big problem for me anymore. I’ve given up wondering about the “what ifs” out there, focusing instead on the fantastic community I’m now part of. I truly feel like I’ve found a place I belong and my life has become much easier and more enjoyable as a result. I’m much more content and back to being the confident person I used to be.

I plan to start volunteering, helping people like me by giving them hope and showing them the ropes. I want to pass on the message that yes, it’s hard living with a disability and yes, your life changes, but the sooner you grieve the sooner you’ll grow. Keep doing positive things, rely on the support around you, and you’ll soon see that nothing is impossible!