Only months into her recovery and rehabilitation Krystal, a teenager, shares in her own words her journey so far with Acute Necrotizing Encephalopathy. Diagnosed initially with a brain tumour, Krystal developed ANE post surgery.
It was a seemingly normal sunny day….. in a matter of hours my life changed, I was having double vision so I got my glasses re scripted, they were only tested a week prior.
The next day I went to the local ER, the male nurse said he wouldn’t find anything in the CT scan, that was until they saw the brain tumour and hydrocephalus.
The local hospital said I would be in the Children’s Hospital that I was transferred to for 10 days but several complications and 4.5 months later and I was finally being let out for year 10 graduation. I still couldn’t walk or even stand but I still went, wheelchair bound.
My neurologist told my dad via email (as my dad had asked him a question) that it wasn’t typical ANE. I went to rehabilitation in the hospital and I go to rehabilitation now where I live.
I’ve had several different physiotherapists, most of them being male, I’ve had students as well, I used to go 5 days a week but now I’m going 3 days a week. I go to school on Monday’s and Wednesday’s. I may be able to go 2 and a half days and do rehabilitation in the afternoon instead of the morning.
What isn’t known is the feeling of helplessness when you can’t walk and struggle talking. If you’re 7 or older and acquire ANE you will grieve what you’ve lost. For me it was the use of my voice and legs. I couldn’t even get into my shower and for me, it was really disheartening knowing I had limitations.
I spoke with ANE International about fatigue and wanting normality. What sparked that thought, was knowing I couldn’t do what other people could do and due to my muscle weakness which I had got from ANE, I tend to drool. I don’t mention this often, not because I’m embarrassed but simply cause I forget.
Fatigue is the number one thing people battle with, for me I get fatigued easier at school and then I get a second wind. This means I’m unable to do what I used to, I can’t pull all-nighters and due to the tremoring in my hands I struggle to do make-up.
I have a delay in my left eye so it’s constantly closed, which makes it extremely difficult to wear mascara and keep it on. I was incontinent and had to wear adult nappies (diapers) and felt awkward asking my carers if I could go to the bathroom. I also felt very self-conscious emptying my bowels as much as it is natural. I would wait until I was with my parents to empty them, I was just too self-conscious.
I do 3 types of therapy, physiotherapy, occupational therapy and speech therapy. When I came out of the hospital I could only speak 2 words at a time, I couldn’t hold a conversation.
So trying to tell my parents when you can’t talk that you were in pain was really hard. My dad cried whilst hugging me because he couldn’t understand me. I also couldn’t move when I left the hospital, so I tried to bum-scootch over to him on the couch, and whisper as my voice wasn’t strong enough to tell him.
I didn’t have a brain psychologist so I had to make do with regular psychologist’s. I had 2 when I first started but recently let one go.
Krystal is continuing to recover and recently progressed to using a walking frame. It’s not often we hear from an ANE survivor themselves and we are so grateful to Krystal for sharing her story with us.