Posted in Life

We recently found out that my mother has (ALS) Lou Gehrig's Disease. The average life expectancy is 2-5 years, it has taken a year to get diagnosed and will take another 3 months to get a much needed appointment with a doctor who treats this disease. (Medication cannot be prescribed without this appointment). So we wait...

In the meantime, we can research and attempt to prepare ourselves for the future. This is not an easy task. Knowledge of the disease is not the same as preparedness. One can anticipate death but how can one anticipate being alive, locked in a body with only the ability to blink? The mind, memory, and all thoughts remain intact but the body slowly shuts down until the only thing that remains is eye response. How do you prepare?

I found this:

MY BATTLE

I am aware of the darkness that surrounds me; there is no world outside. There is no control nor is there a need for the control of pain that wells up within me at the thought of the words of dread that I rehearse over and over in my mind. I exist in my moments of despair. I can see no light of day but then; I do not see what others do. My world is filled with only that which those before me have glimpsed during their moments. My thoughts remain locked within the depths of my soul, for from there once came my feelings of love and joy and happiness and all things that are good. I feel a grieving from within the very depths of my soul...
I am afraid!

I want to leave the depths of despair; I yearn for my yesterdays filled with love and joy. I want to reclaim my yesterdays and overcome my feelings of hopelessness. My pain is measured by the love I have given and received in my life; therefore I cannot begin to tell you the measure of the pain I feel. I find myself hoping that I have given a part of myself to each life that I have touched; be it in words spoken or deeds done. I believe that I have a purpose on this earth to fulfill and I ask.... Have I fulfilled it? I feel not; I need more time. Then, into the darkness I grasp for strength and as with others before me, I am given a glimpse of hope as I realize that.... I have not begun to fight!

I then realize that my battle will be great! I ask you be with me in my fight. I ask that you be strong in my moments of weakness and above all, share my truths. I will fight with my very being! I will walk forward! I will pick up my light and lift it high; I will find my way through the darkness! I will fight with the strength of my memories; knowing that others share my journy; knowing others walk bravely by my side! My feet my not always carry me on the road I must take but I will not be defeated in the fall because I walk in the footsteps of those before me...I walk in the footsteps of HOPE!

When the day comes that I feel that my walk will not have been in vain, I will have won the battle I will so desperately fight for! We will have found a cure!

Millie P. Lorenz

I am trying to remain positive.. to embrace this disease and find something positive in it. I know that God has not allowed this happen without having a bigger purpose for us so it is my goal to find that purpose. When I am feeling all alone will you please help me to see the big picture?

***********
For more information:
What is ALS