Thursday, October 22, 2009

A Snickers Story

With the ALS one of the many luxuries you kiss good-bye is being able to wipe your own ass. Now, I have spoken too many of my PALS with ALS about their first “Operation Tush Cleaning” and they described it as embarrassing, humiliating, and saddening experience, because they lost one more bit of independence. I was so not looking forward to my first “Operation Tush Cleaning”. Before I describe my first ass-wiping, I want to tell you about the list. When I was first diagnosed almost a year ago I knew “Operation Tush Cleaning” was in my future and I wanted to make sure every nut job care taker did not have full access to my beloved booty. So, I told my mom that I had a small very prestigious list of persons allowed to perform the tasks involved in “Operation Tush Cleaning”, called the butt wiping list. I didn’t realize how honored people would be to have their name on this list until I told my aunt Mary her name was on it and she expressed her utmost gratitude. One of the crappy things about the ALS is it gives your bowels a mind of their own. Sometimes things move with ease and sometimes you are doing lamaze breathing while you struggle to drop some kids off. Sometimes when the turtle head is poking out and you are using all your might to keep it in its shell, it creates a little nugget of love. When I visited Southern California I was hanging out at my boyfriend’s house in Fullerton, watching the fish sticks episode of Southpark while Jason was outside decorating for his sister’s, my bestie’s, 30th birthday bash. Then it happened. I felt a rumble in my gut and before I knew it, I was holding on for dear life. I needed to take the Browns to the super bowl and Jason was not in yelling distance. I clenched and squirmed, my face turned shades of blue and purple, when my ALS weakened butt couldn’t contain the turtle and I birthed my first nugget. Ahh! 25 years old and I made a dookoo in my pants. When Jason finally made his way into the house I explained our circumstance with shame and he carried me to the bathroom. Once I was positioned on the pot and Jason handed me the TP, I had a problem. Now believe it or not the embarrassing part was not telling my boyfriend I made a little nugget , but I no longer had the luxury of cleaning my own butt mess. He needed to perform my first “Operation Tush Cleaning”. To lighten up the mood and being the jokester that I am, while he was performing a task no boyfriend should ever have to do, I asked, “Is it like a little Hershey Kiss?” (I know... gross, but we were in a kinda gross situation). And without skipping a beat or turning in disgust he responded, “Nope it’s more like a melted Snickers bar.” All embarrassment was flushed down the toilet as I let out a giggle and knew that was why he was number one on my butt wiping list. It takes a real man to wipe their girlfriend’s ass.

Tuesday, October 20, 2009

The Birth of Gimp Girl

When the als started in my left foot, I was quickly referred to as the gimp. All was Okay as I embraced my new nickname. It wasn’t until November twelfth of that the new jovial name endured a whole new meaning. That was the day a doctor I had just met confirmed what I had thought over many restless nights, I had the ALS. Now when I say "the als" don't pronounce it A L S , but as one word als. Like the name Al, but with a zzz at the end. Now knowing that I am going to die in the near future from this crappy disease, there are many things I want people ask me regarding my eminent death, things I myself would be curious to ask someone with the ALS. I think people are either too shy or don't want to hear about the ailments of dying. I have wanted to journal my experience, but did not want to waste the time doing so until l was pretty confined to my computer, and that time is here. I thought what better way to share my thoughts, but with the abyss of the world wide web. My mom told me to write letters or make videos to help my loved ones with the grieving process, but I don't want to associate my death with sadness and misery. So here is my blog documenting all the information I feel is pertinent for people to know about me. Every day of my life is an adventure as I am rapidly becoming more and more disabled. And at the same time freed of responsibility.