You know about the placebo effect, but have you heard of the Nocebo effect?
That is when the doctor tells you that a situation is hopeless and in the immortal words of Morpheus from The Matrix, “your mind makes it real”.
Free your mind.
I am not advocating for being utterly delusional. If you have a tumor the size of a baseball and you get winded on your way to get the mail and you have no plans to change your diet of soda and doughnuts then yes, it would be wise to get your affairs in order.
But if you are willing to change, then the possibility of a different result, no matter how daunting the odds, does exist. So does the possibility of a cure.
Years ago I worked with a man who had been diagnosed a decade earlier with an inoperable brain tumor. His doctor thought he was going to die. He decided that he would live. His boss supported him by making no arrangements for his death or even disability. No one was cross trained. No work was handed off. His entire “support” group of others with brain tumors died. But he did not die. Improbably his tumor went away and he was cancer free and in excellent health when I met him over a decade later.
When I was in grammar school I had a friend with Down’s syndrome whose mother refused to accept the limited life the doctors were presuming possible for her. In the end she got a driver’s license and a job.
My grandmother was all but told not to get too attached to her eldest son when he was diagnosed with Type 1 diabetes in 1936. They didn’t have monitors or spiffy pocket test kits back then. You had to wash out your old needles. There was no health insurance. Kids died. And my uncle did die…in the 1980s.
My own asthma was so bad that I used to use two inhalers and an epi-pen with that full breathing treatment machine if I got bronchitis, which I did every winter. I was told it would always be that way.
Except that I haven’t needed so much as a rescue inhaler for years now.
No one knows the future.
So don’t let anyone tell you that there is no hope, no cure, nothing you can do. Refuse to believe the highly unscientific, “these things happen” and “This is your new normal, you have to accept it”.
You only have to accept that this is where you start. You do not need to accept that this is where it ends.
And if your doctor is the doom and gloom type, then you can refer her here
I cannot say that most children will recover neurologically the way that mine did. I have no medical training whatsoever. I just knew that I had to succeed or die trying.
I know that often things do not get better. People die. Kids stay stuck. And I have no idea what your limits are.
But this is your story, not my story and not your doctor’s story. You get to decide when and how hard to fight.
Make your own choices. Write your own story.
But whatever you do…don’t let the turkeys get you down.