Our brain is a fantastic organ working like a supercomputer. Over 100 billion neurons working together through synapses connecting everything. We feel, we learn, we remember, we are able to move all thanks to this single organ that uses more than 20% of all our resources.
People diagnosed with Kabuki syndrome are common to have a mild or moderate neurological disability. Only a few seem to have a severe neurological disability. Unfortunately I belong to the latter. My neurological processes don’t seem to work like a normal persons do and that is a huge challenge for me and my family.
Not being able to use my brain to its fullest potential makes it very difficult for me to learn stuff and to become somewhat “autonomous” in life. It’s not the feeding problems, the physical disabilities nor the sensory issues that are my biggest challenge… it’s the neurological impediment that holds me back the most.
A brain works in mysterious ways, everybody knows this. But everybody also knows that “learning” is a very interesting process. As people try new experiences, neurological pathways are created between the neurons in our brains. So called synapses that grow stronger and thicker everytime we repeat something. Common belief states that we have to practice something about 10000 hours to reach the “mastery” level for this. This is due to “neuroplasticity” or in layman terms, the more you use particular neurons and synapses, the stronger and faster they get.
Somehow, due to my Kabuki syndrome, this process works a lot slower in my brain. Somehow, I need a lot more hours to reach a certain level of neuroplastic mastery. That is why eating, walking, speech, toilet training, etc… is so much more difficult for me.
But you know what, it has also been proven by scientist that people learn a lot quicker and better when they are feeling happy as opposed to when they are feeling stressful or anxious. So I’m clearly not going to get stresses by my slower brain function, that would only make things worse!
So when people ask my parents: “is he always this happy?” they answer “yes, that is simply how he is” – and they are right! I decided right after birth that if my life was going to be an uphill battle, I might as well fight it smiling and feeling happy.
I’m blessed you know. Many people go through life feeling anxious and stressed out about many things. They go through live worrying about almost everything. Well I don’t! It’s like in the song “Everybody’s Free (To Wear Sunscreen)” by Baz Luhrmann: Don’t worry about the future; or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum.
I will continue to learn stuff and I will get better at them in due time. And although this will most certainly take more time than with most people, I have time on my side. Or as I usually say it: Life is short, we have so many things to learn, to see and to do…so let’s move slowly!
Don’t worry, don’t rush, don’t be anxious and don’t stress out… be happy, be hopeful and be joyful. Take your time to make strong meaningful and long lasting connections – not only within the confinement of your own brain, but also with your friends, family and loved ones. That is the only thing, that truly matters!
Hope you enjoyed today’s blog and see you next time!
Have a great week!
Jerom