Kerri-Anne Kennerley: At Last, A Premier With The Backbone To Deliver On Spinal Care
Dear Premier: We know money talks and I know that money can help people walk.
It is hard to describe the elation at knowing that the $15 million you have earmarked for research and science into spinal cord injury (SCI) will make a huge and life-changing difference to people who suffer from quadriplegia and paraplegia, and, importantly, their families.
I am heartbroken that this is too late for my husband, John, but I know he would want all spinal cord injury sufferers to benefit.
Having followed the varied exciting research currently being conducted, I know this injection of money will fast-track real answers, real treatments, real discovery.
Spinal care is not an age-related issue. It can tragically happen to anyone at any age. John and I spent time with teenagers, young people with young families, middle-aged people who have had accidents...
Life as they knew it ceased. Life for their partners and families just ceased. Lives shattered.
Never again will they enjoy the benefits of the simplest of tasks, such as feeding themselves, scratching an itch, turning over in bed, comfortable and easy travel, having complete independence.
Their life is filled with constant rehabilitation, drugs, pain and indignity.
Many people believe quadriplegics have no physical feeling. If only that were true. They feel so much, but can’t move their bodies.
After a catastrophic injury, the brain is constantly sending signals through the nervous system to alert the body that there is a big problem. The signal is pain. The trouble is you can’t fix the pain because of the injury in the spinal cord.
It is neuropathic pain, which is the most difficult to control.
And control is the best you can hope for.
In John’s case, his injury was from the neck down, and it was a constant burning sensation in his chest… like a roaring fire.
Living with quadriplegia is the most undignified imprisonment.
Every morning, a nurse must give an enema and sometimes even massage the bowel to help it open. A catheter attached to the bladder was a tube coming directly out of a hole in John’s stomach that had to be changed monthly, as infection can happen regularly and without warning. The urine bag is attached to the leg and must be emptied regularly. If you forget and it fills and backs up, it can cause a stroke.
John was winched out of bed and into a wheelchair with an electric sling every morning, then back into bed every night.
Clothes needed to be comfortable and easy to put on -- harsh fabric can rub the skin and produce a burn. John’s circulation was bad, so healing was slow. Skin can become like paper.
But I got so tired of seeing him in trackie outfits. I wanted John to look smart. He always prided himself on dressing well. Not to be deterred, I had an idea:
I got the scissors and cut the back of the shirt from the bottom up to the collar and put it on him as you would a child.
Excited, I grabbed his favourite sports jacket. John was horrified that I would cut up his coat. But it was no use if he couldn’t put it on and -- as the cut was at the back of the jacket -- nobody could see it thanks to the wheelchair. And he looked great.
I would never allow anyone who was sick around. Luckily John only got a cold once. But what misery it was for him. You see, quads can’t cough, they can’t blow their nose and, of course, this can so easily turn to pneumonia. It went on for weeks and weeks.
One day I looked up the definition of ‘carer’. To care, as a verb, means to make provision or look out for; and the idiom ‘take care of’ means to watch over; be responsible.
Add to that deep love, affection, exhaustion and frustration, and it might just scratch the surface of the day-to-day life of a carer.
For most carers, it's not just a day, week or year. It is for as long as it takes, or where life takes the condition to the end. Or until you physically can’t cope anymore.
Emotional and personal cost aside, the financial cost is massive. You 'care' for someone because you want to and there is a sense of joy -- simply putting a spoon to their mouth can be satisfying (although I learned not to get glued to the TV at the same time and lose concentration... messy).
But, for most people, you financially HAVE to care.
So, it is logical to invest in the future treatment of SCI in order to save billions of dollars.
It is so difficult to care for a quad at home. You need nurses, equipment... The only alternative is a nursing home, which is expensive, and very few of them have experience in SCI, meaning a future there would be sad with bed sores, pneumonia and death.
No, it is not a nice story but a real one. And it could be anyone of us next.
So thank you, Premier, for thinking ahead. I hope this funding will be the miracle needed to walk again and you will consider it the greatest decision you ever made.
Kerri-Anne Kennerley is a Spinal Cure ambassador.