Fibrodysplasia ossificans progressiva

Every now and then I’ll catch a documentary on TV. Yesterday I just happened to find one about an extremely rare disease which makes damaged tissue to ossify. Which in plain English means that fibrosis tissue (such as muscles and ligaments) will basically turn into bone if injured. This means that mobility will gradually decrease until it becomes an impossibility. The worst case was a man named Harry Eastlack who, before his death, could move only his lips. Basically he was a living statue. Bone statue.

The documentary was about a nine year old girl in England who lived with her mother. As this condition begins with bone developing around neck and shoulders to progressively move downwards until all of the body is affected the girl had yet full use of her legs but could barely move her arms. She could not open doors or even scratch.

There were also two men with this condition which the girl’s mother visited in order to learn about the disease. One of the men was only twenty nine years old and could barely walk. His legs were locked one over the other leaving him cross-legged. His spine had crooked and his arms he was barely able to move. But in spite of everything he had a very positive view on life. Sure, he got sad and angry but, he said, doesn’t everyone?

The other man was in his fifties and almost completely immobilized. He has chosen and upright position and so he will remain for the rest of his life as he can no longer bend nearly any joints. But also he had a bright outlook on life. And I couldn’t help but wonder, why does he even want to carry on living? Why do any of them?

Also I recalled reading a story because of a college-assignment. It was about a woman calling herself a cripple. She had Multiple sclerosis (MS) which is a condition that makes the immune system attack the central nervous system and causes deterioration of neurological functions such as eyesight and mobility. The parallel to the people in the documentary is that persons with MS also experience a decreased use of their limbs. Moving becomes difficult. Yet the woman telling her story, just like the people with FOB, not only stayed alive enduring her condition but lived to the best of her abilities.

There’s a huge difference between being alive and actually living.

Like many other times when I’m faced with or reminded of disease that, let’s face it, are terrible I wonder what the hell I’m doing. These people carry on, they think positive and they live their lives the best they can. What do I do? It’s always next day, next week, next month, next year. Oh, when I’m in high school I’m going to start doing this. Or when I’m eighteen I’m going to get started on that. If I just move out I can start living my life the way I want to live it.

Next day always arrives but the day never comes.

The people in the documentary, the woman in the book – they all saw solutions. That gets you somewhere. My world is full of problems and as they get too many to solve I push them aside and decided that there’s always tomorrow. I can live tomorrow. But watching that documentary made me want to change that – things like that often do.

Know what the sad part is though?

Instead of making anything happen I think about how I really ought to do something worthwhile with my life since I have so many opportunities and so many dreams.

But then there’s always tomorrow.