Monday, August 22, 2011

How to be remembered

Imagine yourself waking up one morning not being able to walk, or holding your coffee cup or even being able to dress yourself. Well many people go through that for many reasons,. But I go through that everyday because I have a disease that robs you of your life and makes you become a prisoner in your own body.

Over this weekend I took to the sky to raise awareness for ALS. But this year was different. My oldest sister faced her fear of jumping out of a plane. This was not an easy thing to do. Watching her I felt a sense of comfort knowing everyone jumping would be fine. I felt comfort knowing most of my family was watching and knowing my mom was with us cheering us on from heaven. But the most comfort was when I saw my cousin Sharon. I not only felt my mom's presence but I felt my Aunt Eileen's presence. Sharon is my Aunt's daughter. I felt much love from the living and from those who have passed.

This year I wore a T-shirt that my cousin and I made... Well she made and I gave her names of those who have ALS and in a heart those who passed from ALS.
I wanted all of them to be with me in spirit as I jumped.
The jump was amazing and again I felt free from ALS when in the air. After the jump I came down from the excitement and I was exhausted and then took a three hour nap, or close to it.

The reason why I say this is because I have realized that living with ALS has become more difficult. Even though I smile and say things are good deep down I know that I am getting worse and the progression of the disease is not slowing down and that I am not able to do things quickly or for a long period of time. I tend to tire out very quick at times. However I continue to be upbeat because I know that if I let the disease get the best of me, it would take me. I am refusing to give in and I will continue to fight.

I hear people say how sorry they are to hear that I have ALS. My come back is, don't be. I am living... Not dying. When you hear a person has a terminal illness it doesn't mean that they are dying. To me it means they are fighters for life and that is what I am doing along with many others. I am not inspirational nor am I a hero. I am Robin Mower and I have ALS and I along with others are trying to find a cure so no one else will have to suffer from this disease. That is why I do what I am doing and not so others can say I'm a celebrity. I go the distance for ALS because I can. That is how I want to be remembered.

Now I ask you, if you are to die how do you want to be remembered?

Wednesday, August 10, 2011

What inspires you?

Today as I sit here typing with my eyes I wonder what inspires people to do the things we do. For me I not only just want to help others with ALS, I feel that I have to. Dealing with this disease has changed me in so many ways. I am not one that just does things just for attention... At least I didn't feel that way. But dealing with becoming a prisoner in my own body, I have noticed that I won't allow this disease bring me down. I want to raise my voice and get all the attention that I can so we can find treatment and a cure for ALS.
I am inspired by many people and things for different reasons. What inspires me most besides my family are the people who are fighting every single day and refusing to give up. Our military, they fight for our freedom and then they come home and they still have to fight for simple things in life. Our government says that they are hero's, my question is why doesn't the government treat them afterwards like HEROS? I have a cousin fighting for his life because he made the decision to fight for our country. He was medically discharged and I have to ask where is our country's support now that he no longer wears the uniform but instead wears oxygen? He inspires me, my nephews inspires me. Every person putting their life on the line for our safety, freedom that inspires me. So I ask what inspires you?

This year alone I have friends that I call my ALS family that have lost their lives to this disease. I look at them and think about myself. Hoping that I too will have the courage that they had. I have a fear of being forgotten and yes that scares me. But I ask myself WHY? Am I being vein? or is it that I'm afraid of being alone?
My faith inspires me, although I was raised catholic I do not attend church regularly I still believe and I know that although I am not perfect I know that God does love and does forgive me and my sins. I know God has a place for me in his home when he's ready for me.
Life inspires me! I have been able to meet many people and to do many things and I am appreciative for every single day that I am able to do things for others.

Many people closest to me feel that life dealt me a very bad hand, I totally disagree with them. I wouldn't be who I am now if I didn't go through the things that I have gone through. Life in general has it's good and bad hands but it's how you play your hand is what counts and you could just have a winning hand. I know I have a hand with jokers and no wild cards but I am inspired by all of the others that have played and the ones who continue. You all are my inspiration to fight with all my might and to never ever allow myself to give up on life.
I am going to be Charlie Sheen for a moment and use his motto "WINNING" yes you read it and that is exactly how I feel,. I'm winning because I have the ability to accept the fact that I am not dying and that I am living my life to my fullest.
So again I ask what inspires you? Be honest with yourself and I think you just might amaze yourself in ways you never thought were possible.