The Last Right by Marianne Thamm (my reading book .txt) 📗

diary, Life with NF and Everything Else and inscribed on the opening page: “Craig was born in 1980 and lives in Port Elizabeth, South Africa.”

Like most young people, Craig loved music and had a vast collection on his iPod. The song “Volcano” was one of them.

Below is a collection of some of his thoughts.

ON BEING NORMAL

Is to be normal to be happy? NF1 makes you consider this. In my short life of nearly 23 years, from what I can make out, it is not reasonably so! But I will always wonder what I would feel like had I not been born with NF.

Things that are taken for granted by many people come with such great effort for me. The emotion becomes overwhelming when I think of how I will ever lead the life I wish to attain and the things I wish to acquire and achieve. Then again, everybody in life has issues or circumstances holding them back. But still, I wonder what “normal” would feel like.

I am not afraid to die. Only afraid of how I die. I don’t want to be murdered or shot. That must be terrible. With NF though you never know when it will pull the trigger, just living in faith, wishing, dreaming to live a normal life.

The dictionary says, “Normal” is “typical, regular”. I wonder if I could lead a regular life? Don’t really think so. This NF1 affects your thoughts and these affect your attitude, outlook, confidence and belief in yourself.

It makes me sad to think back on some of the events of my childhood. It is said that these early years are the best of your life. You can be carefree. You can be a child in your mannerisms, actions and way of thinking. I think, or maybe rather, I know that NF robbed me of those years. NF made me unusually serious for my age, different, certainly no fun for the other children to be around.

On Golf

I am very thankful to the game of golf. When it comes to golf I am not average, I am above average. On the golf course, 80 per cent of the time I feel that at least one aspect of my life is not lacking.

On Work

Work. Work is a concern to me. How does a person with certain barriers survive in the workplace? I don’t want to climb the ladder or wish to acquire great wealth. I just want to be fairly happy and be competent in my work.

To relax is not easy. Mental relaxation is difficult with all of these bad and uncomfortable worries in your head.

I think even if you look normal to the eye (I am lucky, NF1 can be very visible) people can tell that you are different. Or then again, maybe it’s just the person that I am.

On Relationships

Is it possible to really have meaningful relationships? When you look at the world and all the hatred, violence and murder, lies and cheating and corruption, maybe it’s best to lead a quieter life out of the eyes of the world.

Children can be so loving, caring and accepting but these same children can also be horribly cruel and savage. They can break you with just one look, word or comment.

On Freedom

Freedom is not necessarily a thing that is given to you, as a parent gives freedom to his or her child, but I believe freedom is a feeling that you feel. There is nothing better for a young child to have the freedom to dream about what he will achieve and experience in his later years. The freedom to know that he will be okay.

When a child is in his bed at night in a dark room, he may become afraid of monsters. Monsters are mean, too big to handle and make bedtime a misery. I suppose in a way NF was my childhood monster.

Life ticks by. Every second is a gift given by God, a second that might not necessarily have been, had He not still wanted you on his earth.

Why does God want me on this earth? What is His purpose for my life? Can I make a difference to this world? I believe God has put me here for a reason. I just haven’t found it yet.

On the State of the World

Why is there so much pain in the world? People have no respect for their fellow humans. Sickness, disability, disappointment. I suppose I am lucky.

To find something that you love and can really do well. I just want to feel relatively in control. Will it be possible to find a job where I have that feeling?

On Religion

Religion means all sorts of things to different people. It gives them hope, something to live for and knowing there is a greater force that is in control of their lives. To me I suppose it is about knowing somebody accepts me as I am and loves me the way no person could.

People are never satisfied with what they have. They always want more. More money, fame, material things, a better life. I’m left wanting. I must fight that feeling. I have so much to be grateful for.

As a Christian, one of my beliefs is a life after death. When I was around 12, I didn’t want to die and go to heaven. There was still so much ahead of me. So much I wanted to see, do, feel and experience. But now, at times, I think it would be nice to go to be with the Lord now. Maybe there I will feel fulfilled, feel total peace.

On Sickness and Ill-health

I think it is easier to be sick when you are a child. Aside from the medical facts of children healing easier and faster, I think there is another side. The mental side. I could probably not handle now at 22 what I handled at seven.

NF used to occupy my thoughts for many hours of the day. Now