My Story in a Nut (version two)

I've dealt with ALS for the past 21 years, even though I have only had ALS a little while. I was 24 years old and you can imagine the shock I felt when my doctor turned to me and said you have ALS. I knew it was a possibility, now is was a certainty. My father died when I was six from this disease and since then my uncle Johnny and uncle Jimmy have passed. Also, my great grandmother, my grandpa and great aunt. My aunt Marilyn died on Fat Tuesday 2010 and one year later her son Tim received his diagnosis. Our family get togethers seem to be more at funerals than weddings and baby showers. I have 15 cousins who are at risk and odds are half will suffer and die from ALS.

I am pretty lucky to have the opportunity of knowing how I am going to die. I have learned there is no reason to ever worry. It is an incredible freedom to do whatever I want as long as I am not hurting anyone. I don’t feel guilty about my weight or spending too much money, I don’t worry about the extra calories in eating dessert, or being lazy, or getting tattooed. About four months prior to being diagnosed with ALS, I was about to celebrate six years with my boyfriend and was wishing to get married. There was nothing in life that I wanted more in the world than being a mom. I was saving money to build up my "nest egg" in hopes to buy my first home. I was at the beginning of the rest of my adult life and excited for my future.

Since being diagnosed, the relationship fizzled. I will never experience being a mom. I’ll never walk down the aisle on my wedding day. I sold/gave away all of my things and moved back in with my parents. So someone could spoon feed me, dress me, bathe me, and yes, wipe my butt. Which by the way, there is a small, but prestigious list of those who are allowed to wipe my royal caboose. Today I have a tube in my neck attached to a machine because I can't breathe on my own. A tube coming out of my belly to a bag pumping food in my stomach because the simple luxury of eating is something ALS stole from me. And another tube in my arm feeding me antibiotics because pneumonia cripples me every few months. I lost all control of my body, except eye movement. I wear a diaper and lay in bed all day, everyday with my DVR and optical controlled computer. To some extent I chose to die this way. I ponder if this way of life was a good decision or if dying last year would have been easier. Was this extra year worth it?

I would never want anyone to feel sorry for me. This is my reality, my life, and I just accept it. I knew I had a 50/50 chance of dying from ALS, but never thought I would endure it at 27 years old. I do not believe I will live to see a cure. I hope in sharing my story I will bring some awareness to this disease and my efforts will make me the last one of my family to die from it.