Why this Blog?

For years doctors, nurses and other health care personnel have been telling me to write a book. They always seem to consider my ways of dealing with a few nasty and potentially fatal diseases as possibly valuable to other patients. I'm not much of a writer but recent events have again had me thinking about writing a book to help others. Since my occupational hobby is computer science I felt writing this blog would be more suitable.

I was told time and time again that there are 2 ways in which I'm different from the usual disabled patients. My positive personality confuses everybody. It's as if you HAVE to be depressed about being disabled. I've heard stories about patients in health care centers struggling with alcoholism and other addictions because they weren't capable of dealing with their life. I know my sunny disposition is a true blessing. I'm never down for more than a day. Something that always pleased and puzzled the healthcare workers. I've had countless conversations about my outlook on life because of that. The smallest things can make it a wonderful day for me. A butterfly dancing in a breeze. The first snowflakes falling. A child laughing in the streets. Lending a helping hand to another person. Depressed people only look inward, feeling sorry for themselves.

It's actually not an acquired technique but part of who I am. Only 5 years old I was stuck in a hospital for 5 weeks after a nearly fatal attack. Next to me, separated by a large window, was a 3 year old toddler with a severe skin disease. His body covered in a thick suit. Gloves covering his hands to prevent scratching. The every day ritual of removing his suit and applying new creme was a nightmare. The toddler would scream so much it would upset me. He cried all the time. Visitors looked like aliens due to the protective suits they had to wear before being able to go in. I remember bouncing up and down in my bed. Doing the weirdest things and making the funniest faces to make him smile. It worked, he started smiling and was more relaxed. Every time my toes would touch the floor an Indonesian nurse would come in screaming at me to get back into bed. I hated her but I did see the smiles on the nurses faces. I still see Cisca the lovely nurse I hated so much every now and then.

I believe that even when disease is part of your life it should never determine it. No matter how debilitating the disease is. Quality of life is always my most important goal.

To many healthy two footers quality of life is a house, a big car and lots of money in the bank .......... until something goes wrong. The shock is usually gigantic and they always look for quick large answers. I've learned to look for small answers and usually end up with a tiny snowball that grows and grows.
It helps to observe others. I've met a patient who was stuck to her bed for many months. Pins through her head and other body parts to keep perfectly still. All that time making eye contact with people through mirrors. Her bed would rotate her body face down or face up several times a day. What she missed most was not being able to look in someone's eyes being in that contraption. That tiny human interaction which seems so small became her issue. I'm the kind of patient who doesn't freak out. Who stops and listens. Who always tries to find a solution to the problem such as lying on the floor beneath her, looking into her eyes while it was her face down part of the day. I guess that's why I've often been labeled the sunshine of the ward. I have the ability to see others more in need as me.

I've met a man dressed as an astronaut. White thick gear and a hood with a small red window. He had been living in a closed off floor of a hospital for nearly 4 years. Huge drapes covering every window, turning every room into total darkness. His skin couldn't tolerate the slightest spark of daylight. I was told he was living there so I set out to visit him to take part in a birthday card for one of the other patients. To him being able to speak face to face to another human was a treat. He was nervous about lifting his hood and warned me I would be horrified. He carefully lifted it in a way he could quickly pull it down if he frightened me. I looked into a pasty porcelain almost translucent face with no body hair. Tears started rolling down his eyes thanking me for not freaking out. I would often look out the window before going to bed. When we went to sleep his life began. He would go bike riding across the hospital grounds in the middle of the night. Moonlight being his best friend.

There's always somebody who has it worse as you!!!! Quality of life to me is making sure I always have a small goal in my near future to enjoy myself about.

My second positive behavior being that I'm very aware of the pros and cons of chemical medication. I know it's limitations. There are ways to improve your general wellbeing without chemicals. Some patients start searching for answers, while others happily stay stuck in their doctor's prescription routine, without ever questioning it. They keep waiting for a miracle cure. That 1 pill which will make them healthy again. Putting their whole life in the hands of their doctor. None of the patients with severe diseases, whom I've met in waiting rooms of various hospitals throughout my whole life, seem to be doing better than patients who venture outside the mega billion dollars prescription medication industry. People who broaden their horizon beyond doctors, hospitals and medication. I've learned many tricks over the years to help me. Often the answer lies partly within ourselves too. Changing your outlook on life is part of the key to a happier healthier life. There are a lot of tools (health care personnel and others) to help you get there but in the end you're the only one who can help yourself. YOU have to actually work for it and can't expect others to be your savior.

I hope my experiences as I stagger through my life are inspiring to your journey. Whatever happens I will keep a small piece of myself alive in this website.