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?
Hi Robin, my name is Judy Glenn. I am glad I found your blog. I like your goal of making someone smile that can not and your wanting to raise ALS awareness. I am joining blogs to encourage people affected by ALS. I have a passion for PALS and their families because I too have been affected by ALS. My mom passed away from ALS in 2004. I read in your blog that your mom passed away as well. It is hard.
ReplyDeleteYou mentioned you faith inspires you. My personal relationship with the Lord is what got me through Mom's whole journey with ALS. I wrote a journal about what my family went through with her having ALS and I am putting it on a blog to help others.
To answer your question....how do you want to be remembered? To have lived for Jesus Christ, fulfilling the purpose He put me on this earth to accomplish: I'm still here, so I'm not finished yet!