“Everybody has Some Body and Head”
(Created by Katarina Turcekova – amazing mother of young woman with SBH)
I’ve met people with spina bifida and hydrocephalus since I was a child … unbelievable, but as a child – almost 50 years ago – I was able to observe more than a 40-years-old gentleman in my hometown of Sabinov (Eastern SLOVAKIA), who was carrying a custom-made handbike. He knew from get out of it and go a few steps on a very special walk. I never found out his diagnosis, but I retrospectively conclude that he had spina bifida. This is confirmed by his shoes, which were different, distinctive and, like his legs, twisted. And his bigger head….
After entering university, I met a charming young lady with her crutches in joint lectures … We did not study the same field; I did not know more about her. We just always greeted each other. She couldn’t help but notice her. I later learned that she was studying speech therapy and still works as a speech therapist. She lives with spina bifida.
During my college studies, I registered a diagnosis associated with a larger skull. I know why. The professor in question showed us the most common shape of the skull in this diagnosis in a black and white picture. Visualized to make it easier for us to remember.
A few years later, when my baby in my womb was examined by doctor and ultrasound, he told me that we had to wait for his next colleague because he had found something that should not be there. When I asked what he found, I was given a medical definition: an enlarged hollow ventricular system of the brain …. that picture lit up years ago, and I boldly asked: Hydrocephalus?
The diagnosis was verified by other colleagues and the doctor in question was praised for his good work …
Since then, many people with diagnoses of spina bifida and hydrocephalus have enriched my life. I meet and register them in Slovakia and abroad, on television and in videos. I have already been to some of them at the funeral. It was impossible not to go. I had to say goodbye to my friends who had never hurt me.
And what did people with spina bifida and hydrocephalus teach me?
Very useful things….
1. To enjoy how wonderful my moving feet are … It started with giving birth to my firstborn son with paralyzed feet. Epidural anesthesia resembled mine at my feet. As I began to feel mine, I felt every single movement like a miracle. And I was thinking of him … what it would be like, what life they would bring him, what they would take him… I admired and still admire my miraculous legs. I know I have them healthy for free. They have already taken many legs without movement; they have mastered many dances without being able to approach their partners foots.
2. To understand how much we force our vision of a happy life on those who are different. As if we have a patent for a happy life just because we can walk. As if every person with healthy legs had a guarantee that he is and will be happy.
3. I was persuaded not to pity them and to enjoy life at least in part as they did – in the cold water they enjoyed freedom of movement, while I was angry at how cold it was. Not feeling cold on some parts of the body has obvious advantages …
4. To recognize that I can’t help each of them, but with everyone who allows and invites me, I can enjoy life and sometimes make it easier for them. I’m addicted to this harmony of common happiness … it’s possible for us – healthy and the less healthy people to enjoy life together.
5. To motivate yourself again when things don’t work out. As usual, encourage them again and again not to give up.
6. Get to know many amazing people covering with spina bifida and hydrocaphalus. Have fun with them on them and then take humor more easily with yourself, my limits.
7. To admire the uniqueness of each of them. To hold in my hands a miracle who had surgery in the womb and to see that today’s medicine can make his life more easy.
8. To discover how much we lose, if we overlook them, hide them, make them invisible.
9. To allow them to go their own way. With mistakes, falls – just like us. They can handle it.
10. To saturate my parenting need. This is deeply personal. A child with a disability satisfied my need to be a mother. Feel the pain and joy to the fullest. And he learned a lot about different forms of love.
Author of picture: Pavol Bicák