The harrowing experience made a few things crystal clear to Lisa Bryant. Photo: Stocksy
We all know, theoretically, that our lives can change in an instant. Day after day, month after month, year after year, we do the same things. We go off to work, have dinner with our families, walk our dog each day, make plans. We know that this life we have created can fall down at an instant because of sudden death or illness. But we live as if it won't.
My family's life changed the instant my daughter was discovered by her sister having a seizure. Within a few hours we knew it was bad. We knew she may die.
It wasn't long before we knew that the encephalitis she had contracted would leave her with brain damage. We considered the prospect of euthanasia if that brain damage was serious and irreversible.
But months later, after a rollercoaster journey through intensive care, when we realised the extent of her acquired brain injury, we took that option off the table. Yes, she has had huge cognitive loss. She remembers us but cannot consistently remember our shared past. She can't undertake basic self-care because every task involves planning – a skill she no longer has. But underneath these losses there is still some of the 'her' in there. We have to honour her fight to live by helping her fight to develop new pathways in her brain to replace the damaged ones.
Before she contracted encephalitis my daughter was doing a research master's degree - preparing to write her thesis in media studies while working part time as a marketing assistant for a not-for-profit organisation. Now she struggles to dress herself.
This is not just a sad story about a personal tragedy. This is a story about the failure of our health and disability systems.
Because these interlocked but separate systems have failed my daughter beyond belief.
I am immensely proud that I live in a country where the public health system outlaid (by my estimate) over $2 million to save my daughter's life. I am immensely proud of the skill that the consultants, registrars, residents, interns, nurses, nursing assistants, allied health staff and other hospital staff bought to this task. My daughter would not be here without their skill, passion and dedication. We owe them, big time.
But having saved her life, where are the systems, where is the support, to heal her brain?
Quite simply, they do not exist.
Over 600,000 people have a brain injury in Australia. Such injuries are not uncommon. We have specialist brain rehabilitation hospitals because of this prevalence. My daughter's referral to one was rejected on the day we were discharged from a 2 week stint in rehab because hers was an acquired brain injury, not a traumatic one. (Think one punch or motor vehicle accident victims).
The health system thinks its work has been done. My daughter is physically healthy once more. The disability system is in a state of absolute chaos as organisations jockey to be private providers under the NDIS. My daughter will probably not be eligible for the NDIS till June 2018.
The NSW Department of Health tell us they are aware that there is "a service gap in the recovery and resettlement phases or people with newly acquired health conditions discharged from hospital". Unable to suggest anything else, they tell us to contact the not for profit organisations. Disability organisations promise high and deliver little because they are in flux with funding being cut.
My daughter was discharged from rehab to my care. We have sat in our house for three weeks now with no access to any ongoing therapy whatsoever. Nothing. She is cured, she has a competent carer, so we are set adrift.
If she was old, or had been a stroke victim, there would be systems in place to help her recover. Not so for her injury. My GP, and the allied health staff at the rehab hospital have advocated for her strongly. We now may get a few half-hour appointments at the hospital she was an inpatient. A bit of speech therapy, a bit of occupational therapy. Physiotherapy if we are lucky, but unlikely. In a month's time I can access two hours respite care a week from a large charity.
Since her discharge my daughter has developed an out of control bite reflex that has stopped her eating or drinking. No support is available to help me deal with this. (Eating and drinking seem a somewhat essential part of living, and worthy of assistance I would have thought!)
The gold standard of therapy for injuries like my daughter's is intensive cognitive therapy – a minimum of 5 hours a day, over a 6 month period. This sort of therapy, a systematic, goal oriented approach to overcoming cognitive impairments designed to capitalise on the plasticity we now know brains have, would help my daughter regain the neural pathways she has lost.
Yes it would be expensive. A lot of money for one person. But less than a 20th of what has been spent on saving her life. Why is the money there to save her life, but not to help to return her to functionality?
I sit in my home, making call after call to disability services, to hospital services, while I simultaneously provide 24/7 care to my daughter. I cry a lot. Not through grief for the daughter I once had, or the son I have also lost as he deals with his own grief with anger and alcohol, or for her friends whose grief is palpable. I will cry for all my children in time.
I don't know if that supposed Chinese proverb is true – if you save a life you are responsible for it. But I hope it is. Because Australia, your tax dollars saved my daughter's life.
And now I need you to accept the responsibility that follows. I need some body, some organisation, some institution to be responsible for helping my daughter's brain regain functionality even though she falls outside funding categories and timelines.
This is why I cry. I cry now because it shouldn't be this hard. I shouldn't have to fight this hard to get her even basic therapy, let alone the intensive therapy she needs. Healing my daughter doesn't finish with physical health. It finishes when that gorgeous brain of hers is functioning as well as it can be.
And if I do nothing else in my lifetime, I will absolutely ensure she gets this therapy.
Why? Mostly because I hate waste. Why waste a $2 million investment? I know she is mine, and I know I am therefore biased, but I guarantee she is worth every cent of that extra $100,000 or so.
And you know what? You are too. I hope you never suffer a brain injury, but if you do, I'll fight for your therapy as well.
Because we all deserve to be healed.