Portrait: Grace
My name is Grace and I am 32 years old. In 2020, I was 28 and living and teaching in Rarotonga with my partner, Theo. In April, I was feeling unwell and having some strange symptoms...
A little bit about Grace
We decided I would fly back to New Zealand for further testing as Rarotonga had insufficient medical resources. NZ had just gone into lockdown, so we decided Theo would stay as we didn’t know when the borders would re-open, and we thought everything was fine. I thought “bad things don’t happen to me right?” I took the last plane.
Diagnosis and hospital care
That night in hospital, I had seizures and they put me into an induced coma. The doctors discovered an abscess on my brain stem, along with other infections. The abscess grew due to a listeria infection. I was diagnosed with Listeria Encephalitis. Theo got a private plane over; my sister and mum drove from Wellington to Auckland and Theo’s parents met me at Auckland hospital.
When they took me out of the induced coma, I remained in a coma for about six weeks. During this time, I had two brain surgeries. When I woke up, I had locked-in syndrome, which is when you are completely paralysed but the mind is totally intact. I could hear and see everything but couldn’t move or talk. I could blink so I communicated by blinking with a letter board. Slowly, I regained movement, and I was able to make sounds and then talk. I spent six months in hospital.
Recovery journey
Now, nearly four years later, rehab is a full-time job. I’m in a wheelchair, I have ataxia, my sight has been severely damaged, I have double vision, the right side of my face is paralyzed, my speech is very slowly improving but people still don’t understand me 100% of the time.
I spent three and a half years living with Theo, on the same property but different house as his parents. Theo and I have since parted ways, and I am now living with my mum, close to family and friends. I see a speech therapist, hand therapist, physiotherapist and a psychologist. When it comes to therapy, there are many good days but also many bad ones. It’s just important to allow yourself to feel the feelings but not give up and just recognize that it may be totally different tomorrow. I also do hydrotherapy and have started up one-on-one pilates sessions that I love.
Looking after my mental health
In hospital, I had a psychologist and I have carried on with psychologist appointments as I believe it is so important to look after not only your physical health but also your mental health.
What I am proud of
I started an Instagram page called ‘it takes Grace’. I am absolutely loving it. I really like how I am educating others about disability and the daily challenges. I have also had family members of people who are currently in hospital want advice, information and hope, and I love that I can help.
Recovery is such a roller coaster and not linear. In hospital, I had three affirmations that I would say to myself ‘this too shall pass’ ‘I am a survivor’ and ‘I am recovering’ When I am having a bad day, I repeat them to keep me going.