Brave enough to keep living - Superman’s loss and rise…and the need to keep researching and possibility of cures anything is possible even at the worst of times when we think there is no hope...
Hearing about the accident of the Superman actor Christopher Reeve a few years ago the world was aghast a he was so well known from his movies and played the part so well, of the superhero who saved everyone whenever there was an accident or major strife in the city with crime, and the mild mannered Clark Kent as a reporter in his cover and with a romance with lois lane. Flying through the skies with his superpowers and a nice person as well.
Even then in real life his children said he was superactive in real life too and his kids said they were always doing activities with him, playing sports really busy with physical exercise. For him to have a major horse riding accident then, after being used to being so active it was a shocking turn of events that left him a quadriplegic and in the hospital to wake up not being able to move at all was a terrible way to be. As the public waited for him to wake they wondered what would happen and would his life supports be turned off? His mother said it would be better if he died because he was so used to an active life. Not sure what kind of mother this is.
However Christopher’s wife stood by him, as women often do, but in this case it was a big step and commitment for her to keep believing in and helping him, and when he woke up he said maybe I should just die. He was terrified of all the machines including his breathing one would fail he was so totally dependent now on these and the people around him. His wife Dana, told him whatever you decide I will support you but I want you to know that if you want to live I will be here to support you always.
He decided to live but it was no small decision – but his bravery in the face of extreme fear was consolidated by a woman who was willing to take the challenge and support him. That’s commitment that not many will take on but she would. Their little boy was only 4 years old at the time and he had two other children from a previous partnership so there were children involved too in his life. His fears would have been dark for him and his inability to move at all incomprehendable. He said later as he grew stronger that he realized now how complacent he had been before when mixing with those with disabilities that he never thought he would be one of them. But any of us could.
He started lobbying for those with disabilities and for those with quadriplegia now with his new understanding of their needs but this took him a long time to stop actually being afraid only because of the love and support around him - those who do not have that buckle from that lack of support even those without disabilities. So vulnerable and so needy yet there are those who will rise to the occasion. No one can make it on their own in this life.
Christopher Reeve was asked to speak at an Academy awards night (1996) but was afraid his machines would fail yet still did that and felt the love from those around him again. From then on he lobbied for public awareness of paraplegia, and because he was so well known people sat up and listened, he even made movies from his wheelchair and his wife and children were involved in his efforts. He took interest in stem cell research and said he believed he would walk again however those in the disability community did not like him being interested in healing and cure saying this is ‘false hope’ it is not false hope it is just hope he said. He still believe he would walk again however later he got an infection and died and it was not to be. His wife took up his cause and a year later she died from cancer so young a big loss for her children. Yet it did not end there, as the children now grown took up their parents cause for more help for those with disabilities and continued to lobby for disability rights as their parents did. The recent movie on Chris Reeves life noted that today there are people who are able to walk who were quadriplegic before but now due to stem cell research and the efforts of Christopher Reeve they are walk with help of walkers but incredible considering none would have believed it before. What he believed and worked for actually happened.
If he had decided to die instead of living after his terrible accident none of these things would have been achieved in the area of quadriplegia. He was superman in the movies but he was also a hero in the face of tragedy in his life and loss that he could not have imagined. Because he was brave to carry on living and his wife also was brave and dedicated enough to help him and take up his cause. This was a result of Chris learning to live with a disability that not many have experienced and yet there are thousands of those who do live with this. Or even cerebral palsey and in wheelchairs which the government and NDIS seem to be tone deaf to their need. He did not just live with it he expected more he wanted more to change for those in this situation.
We need to change the model in disabilities of one of hope for better, for little improvements or any improvements not for the benefit of those who are caring but for the benefit of those who live with disabilities – there is still possibility for change and development not for the benefit of the NDIS to kick you off supports, but for the benefits of each person who could possibly seen a change in their lives however little. Chris Reeves saw the possibilities of stem cell research and that is being realized now by others. I have also met a man who had MS and is in a wheel chair and he said he went to Russia to try stem cell and he walked and talk whereas he could not before yet he in his case is losing it now – but in future maybe there could be better progress and developments in this area or any area of disabilities.
As parents of disability children or adults we have to find the courage to be the hero also for our child and for ourselves it is easier to give up when you face so much against you including the bureaucracy of he NDIS and the negative comments of others. As Trump’s cousin did when his son was born with cerebral palsey and Trump told him he should just die - his cousin said he was cruel in his comments, but the cousin resolved to fight for rights in disabilities with his wife they did not give up on their son despite this family negativeness.
When workers take out my son I tell them James is changing all the time he is trialling a new medication they are surprised they don’t expect any changes in any of the kids or people they work with they are not trained or educated if at all, to think like that in any way. I tell them to expect changes in James. When I told people I was trialling James on minocycline when he was 15 years old they also were surprised. I saw research for Fragile X from Toronto Canada where doctors who had children with fragile x started looking for a cure for their children and started a research centre there. Also all over the world in many universities including Israel, California and many other countries they are working on a cure for this neuro-disorder which blocks a child’s development.
I trialled James on minocycline when he was 15 years old so was not a child but still saw him start to write his name and the teachers cried at his special needs school. I trialled him later on Metformin as we heard about it at conferences with information coming from California that kids had started talking from taking this drug for diabetes. James started changing a little again and it seems his IQ lifted. I am not doing it for me as some parents may think it is for him I love him unconditionally but if life can be easier for him I will try it a long as it is safe. Now I mentioned recently I am trialling James on CBD oil as they saw improvements in kids who took this and trials done in hospitals here also in Australia in hospitals saw good improvements in fragile X and autistic children. James is an adult but I will try it anyway not just for anxiety or appetite but for the possible brain development that may occur. I am writing down all the changes I have seen in his behaviour and cognition for other parents to look at eventually. I never increased his dosage but kept it very low as the doctor also did not know about the research until I gave her the hospital articles and wanted me to increase the drops every few days. I felt it made him almost get upset so I decided no increasing and the research article also said low dosage was best and take them off too many medications only use one or two at the most if on this. It is exciting to watch James develop its not for his moods but for his brain and he has changed significantly. Some of the case studies from America saw very young children and toddlers start to change and develop when they took the CBD oil and start to speak. When parents took them off the oil they started to lose their developments and go backwards so they put them back on it. If something helps why not? Some parents are against research and looking for cures but it is not trying to make them normal it is about helping them gain more for their lives and loving them regardless of progress or not but why shouldn’t we try if there is a chance?
I am glad superman didn’t give up and ask them to turn off his life support Christopher Reeve certainly had the courage to keep living it was his decision. We all need that to keep going in life. It’s a hard road and we can want to give up when things get dark, yet if we will help each other it makes a big difference to going on or not going on. People don’t realize the power of their presence in another person’s life. As parents of those with disabilities, we can feel on our own we struggle but why should we desert our own children? Why should we be forced to? Parents struggle even with their children who have intellectual disabilities who should not be written off as unimportant why shouldn’t a person have a chance to grow and experience development and change however small? We need to change the model and that things can change no matter how small it’s a victory for our child and for us.
It’s a cold callous world without love and technology as made people less connected and more selfish research has shown. I love young people teaching them resilience in the past, but I was recently at a shopping centre with James and Rebekah and he was being noisy it was a very busy food court. Some young people behind me were playing around and having fun but one started to imitate James. “Do you have something to say to me?” I asked the girl and the others stopped being noisy, one boy was vaping and didn’t want to be noticed - who me? said another girl No all of you I said…I was so angry I walked away. My daughter said they were just young people mucking around no I insisted they needed telling off they think they can do anything. Do their parents teach them anything? Do they think I want my son not to be able to talk to only to be able to make noises – how would they like it if they couldn’t talk? That’s not fair…I was tearful. A friend said but people wouldn’t realize that you feel for him, she said, well I am making them realize I said. I’m his mother. I am James voice we have to speak up. Not just in those situations but in all areas when our children are bullied or we are bullied we must not be silent. Ever. If we stop fighting we lose heart and we must never.
Christopher Reeve was given a hard experience devastating but still persisted in living and as a lady said to me that was so good of him to decide to live and not die. It was noted in the movie that as a result of all this he went through he and his children (also from a first partner) were closer – his family was closer than before. He gave them his time. What he did with his life after his devastating accident, was deeper and greater than anything he had even done before as a ‘normal’ person. We all need that deeper purpose and to find it is important and not to give up but to reach out to each other instead of wasting time when time is so short. Thanks Superman and thank you Christopher and Dana for what you have done in the face of adversity you were able to do something great and fight for others in disabilities.
All the best
Anndrea x
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