Monday, April 4, 2011

A Dose of Humility, Period.

DISCLAIMER: I don't casually write this blog. I have to push myself to share very personal experiences because ALS forces a person to share intimate parts of their lives with those who take care of them. My goal is to shed light on what I have to go through no matter how embarrassing, these are my experiences. Read at your own risk.

After the "snickers" episode I was dreading the day when I would need assistance with my monthly gift. Everybody poops, but not everyone has a period. I was quickly approaching the point of no return, the point when my dear caregiver Jason would have to go where no man had gone before. To my suprise he was pretty okay about it, although I was mortified while he assisted me in cleaning and padding my bit-bits. He became quite proud of his first hand knowledge of various feminine hygiene products and how they operated all the way from wings to types of applicators. After about six weeks, of really only needing minor assistance with feminine endeavours,the ALS fully conquered the function of my arms and hands. When an area of my body is no longer receiving nerve signals from my brain, the paralysis is easy to deal with. The difficulty of the disease is the weakening of my muscles. Simple tasks like brushing my teeth takes longer and becomes exhausting while my once one ounce oral-b toothbrush begins to weigh five pounds.

With paralysis set in my upper limbs, my mother was giving me one of her infamous scrub downs in the shower and there it was in all her glory, my monthly gift. At that moment I knew what necessary task was about to commence... operation cork the cooter. I soon found myself tilted back in my wheelchair with my legs propped up in the gyn position and Jason with a tampon trying to achieve success in a task no man should undertake. Failure was not an option. I know what you're thinking, why not bypass the tampon and just use a pad. Truth be told Jason is the one who opposes pads because it was just that much more he had to clean up. Whatever. To make an already uncomfortable situation worse, my mother was waiting two feet away for the execution of operation cork the cooter. Jason had three failed attempts when my mother decided now would be a great time to teach him female anatomy and the workings of a tampon applicator. How mortifying to have my mom and boyfriend discussing my va-jay-jay with me in the room, nakie. I was flushed red in the face with embarrassment when my mom demonstrated the process with her hand and vagina plug. She then said something no one ever wants to hear their mother say, never never ever. "Now Jason, the tampon goes in the same hole that the penis goes into. Then you push on the applicator and ta-da!" I lowered my head in shame. Thanks mom for turning my Queen Victoria into a magic show. Jason proudly completed the operation with honors and I could get dressed. With als there are so many things we have to give up and let others do. We feel vulnerable, shy, and embarrassed as we have to expose our bodies, learning humility with every task. I was so relieved when that moment of humility was learned and over with.

Saturday, April 2, 2011

Dear Jesus...

Dear Jesus,
Wow! It has taken me many years to figure out you are the real deal. Thank you for hanging by my side even though I thought you were as legitimate as the tooth fairy. You have given me strength and courage ever since I started to get to know you. I started reading about your life and watching bible teachings on late night TV. You were one cool Jew.

I have been thinking about the day we meet face to face and I hope I have enough points to get into heaven. I wish got to know you earlier in life when my body was still in condition to physically help others. It is so frustrating to be filled with the light of the Holy Spirit which is driving me to act as you have, but I am in a body that can't. So I am struggling to do what I can in my circumstance. Please let me know if you have any great ideas. Maybe I could fulfill this need by becoming a guardian angel. Feathers aren't really in style right now, but I do look great in white and ivory.

Now if I do get the golden ticket into Heaven, I have a few curious questions. Do I haven't access to dead celebrities? I love Queen Elizabeth the first. She was an amazing ginger and I would love to meet her. Also doctor King, Mozart, and Anna Nicole Smith. Oxyclean had a huge impact on my laundry and I would love to thank Billy Maze. Could I please be skinny in the afterlife, but I want to always feel full? A size four with long curly hair and a fashionable wordrobe like Carrie Bradshaw's (you know her, from Sex and the City), that would be the ideal self image. Does the Chipotle franchise extend to heaven? I would give my left leg for a steak burrito. I know that may not be much since my legs don't work to begin with. You must be a fan because it is one of the greatest ideas God gave to man.

When it is warm white light time, can my dad be there? And if there is enough room Auntie Di should be there too. I heard heaven can look like any place we want. If that is true, I would love my heaven to look just like Kuiai. This is the most peaceful place on earth. I would spend eternity swimming with sea turtles and hiking to waterfalls. I think sometimes we humans forget about this beautiful planet you created for us and we simply take it for granted.

Thanks for hearing me out and tell Carla hello. You're forever my homeboy! Much love.


PS I finally found my very own Jesus action figure on E-bay. Winning!

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.