WHAT IS LIFE TO YOU?

I have never been a big reader but have always been a writer. I like to think of life in other ways than just life. I like to think of it something creative and more than what it really is.

A precious light that you are born with inside your soul. Waiting to be fed and nurtured. Waiting for you to see that little light and turn it into a raging fire. For you are the only one who holds the gasoline to make it burn.

Like a story book. Each day a paragraph, Each week a chapter. Think of the ups and the downs the trials and the tribulations. Think of the Lord who will one day read your story at those Golden Gates. He is going to judge and question the way you have written your story.

So think now, am I using this life to help others before myself? Am I going to turn this light inside my soul into a raging power?

-M

I AM A MUTANT?

For a while I tried to hide this and not really face the fact that this was true. I wanted it to go away and thought that if I shut it out that it would eventually disappear.

The "it" that I am referring to is a rare, genetic, progressive, neuromuscular disease called Friderich's Ataxia (FA). When I say rare I mean really rare. It affects about 1 in 50,000 people in the United States alone. It attacks many parts of the body including the muscles and nerves also motor skills, and losing the ability to do everyday activities among many other things.  It forces people into wheelchairs within a few years of being diagnosed. I was diagnosed when I was 13 but I am now starting to see signs of progression.

There is no cure and no treatment to this disease. It is important to keep yourself active in order to keep the muscles used to moving correctly.  Many people believe that things like supplements and more holistic things will slow down the progression of this disease. Scientist believe that there is a cure or a treatment on the horizon. Keeping an open mind and staying hopeful and optimistic is very important as well. Raising awareness so people know about it and are educated about this disease is crucial.

I am the person who never asks for help and I am very independent. So losing the ability to do small tasks everyday has been hard for me. I hate having a lot of attention on me or people feeling sorry for me
or having pity on me. Things like walking and going up and down the stairs is becoming very challenging for as well.

So seeing myself  and experiencing this I know now that I can't hide from this anymore because it isn't going to go away. I have to learn how to deal with this and know of many people with FA who have extremely happy and normal lives. It's just going to be hard for me to adjust to my "new" normal.

People take for granted the very simple tasks in life and I was one of those people. Because it can be taken away from you in a split second. I know that the Lord has a plan for me and I have complete faith in Him that He knows the greater plan.

I feel that it is time for me to be open and share this because it is going to be a big part in my life and I know that it is going to change my life for the better.

To find out more about FA please visit https://www.curefa.org/

-M