Blog 49 7 Million Steps
HOPE – ENABLED NOT DISABLED
This is a topic I feel very strongly about and it is disappointing / devastating to Josh and I, that the large percentage of people who have a spinal cord injury are convinced their injury is “terminal” with no chance of any recovery. The doctors take away all hope!
Spinal Cord Injury is a first world problem, where people having the injury, to a large extent are thrown automatically onto the disability scrapheap! Even the language around the injury is negative and defeating, we need to change this too!
I know this blog will cause some angst with some readers but I make no apologies, I believe activity based therapy below injury works, my son is living proof. Importantly the therapy should be complemented with an appropriate diet, with minimal “drug” support, a positive can do attitude and one has to be prepared to do whatever it takes!
From the moment of diagnosis Doctors and medical teams worldwide “disable” the families and loved ones. They take away all hope; there are now a group of medical practitioners who are coming around to this type of therapy, as they have personally experienced the injury of a loved one and in desperation have sought alternatives, they are the new leaders, they are the chance to finally change the opinions of the majority of the medical fraternity!
Neither Josh nor I have ever researched the internet in regard to spinal cord injury, we never wanted boundaries to his recovery, nor over the years, have we left no stone unturned in seeking alternative recovery options for him. Josh continues to improve albeit slightly, he has recently learned to care for his son! We call it AJ therapy!!!!
We are enablers, Josh was always encouraged to figure it out, whether it was how to feed himself or transfer or do his own cathing! Josh was so desperate to gain his independence he slowly figured it out!
His therapy started the day after his accident, we massaged his toes and fingers for hours every day, before visiting Josh, all his visitors we told he is injured – injuries can recover, some may say we were naïve but that was all we knew and we had HOPE! We were always positive! Being positive, is not an easy route to take. My 2 goals from being told the devastating news was to give Josh his independence back no matter what it cost, walking was so far into the future at that stage, for me it was about his independence and keeping him “fit and focussed!”
Josh set a goal to walk, but there were probably 100 mini goals ahead of this, he realised if he didn’t do the small activities he would never walk! For me I committed to do whatever it took to help him, but he had to want to walk for himself…not for me!!!
When we speak to a new family we are about hope, we never sugar coat recovery, it’s hard and expensive, but many of the simple tasks can be achieved while in hospital…
Josh left the hospital walking about 10 steps, it was a beginning! For 10 years I financed his recovery and rehab and his lifestyle. Josh had always enjoyed a positive lifestyle and no matter the cost I ensured he did!
Obviously things have changed a lot since 2010 for both of us, but Josh still endeavours to maintain his fitness.
I can honestly say, I had to enable Josh as I had no choice I had to work to pay for his therapy therefore he had to gain his independence.
Our harshest critics come from within the spinal cord community which is really sad and disappointing. Ignorance is no excuse! We are accused of being about walking, this is so further from the truth. We are about encouraging independence and believing that recovery is possible to what extent we would never make a prediction!
As a family we have worked tirelessly in helping people come to terms with their sci and offer hope and encouragement towards their recovery. We never say it’s easy, we never make promises. While I was working at Project Walk, Josh and I were responsible for referring nearly 10% of their clients for nearly 2 years. While Josh was at PW I paid the same hourly rate as everyone else!
I have never been Josh’s carer, I am always his Mum – I am his coach and mentor …
We made little adjustment to our home when he came out of hospital, we always believed he would manage and he did!
HOPE IS EVERYTHING WITHOUT IT THERE IS NOTHING… and for the record there is no such thing as “false hope” you either have hope or you don’t!!!!!