Saturday, June 18, 2011

Paralyzed Man

I think it happened on a saturday early in the morning. I didn't know it at the time, but for the week prior he had really gone downhill. Months before, Michael and I sat on the L shaped couch with mom and dad when mom informed us that daddy was sick and he was going to die, but not for a very long time. They explained to us what his disease was and what was going to happen to his body. He was not going to be able to move anymore. No tears were shed, it seemed like a fairly simple conversation in my six year old brain, even though it must have been gut renching for everyone else. It did not phase me. When he could not hug me anymore I remember climbing up into his upsy-downsy bed and confidently declaring the cure for the ALS. "Dad, if your muscles are getting weak, then all you have to do is exercise to make them strong again." It was so simple why hadn't these scientists thought of it?

Fast forward to "that" saturday. I was slouching on the edge of the L couch watching "Troop Beverly Hills," one of my most favorite movies. It was early in the morning, I think I was still in my p-jays, there were many people coming through the door, but that was quite the norm during those days. We were constantly surrounded by family. Our family room with the L couch was one huge open space with vaulted ceilings expanding to the upstairs, a fireplace on one side near the front door, and the dining room on the other. A dining room with no table because it was now his bedroom and had been for some time, ever since he could not make it up the stairs. It was not much of a bedroom just a hoyer lift and his queen sized upsy-downsy bed elevated on top of cinderblocks so his lift could fit under his bed. This is the same bed I live in today. The walls were painted peach which left the dining room aglow when the afternoon sun hit the window and saturated the room. He had a perfect view of the entire bottom floor and of me only a few yards away. He had not been talking loudly because breathing had become difficult; I knew that because he started wearing oxygen tubes (this was long before bi-pap machines). So what came next was shocking, because his weak quiet voice started to yell. "Mommy I love you!" "I see the light!" "Oh God please take me!" Over and over until there was stillness. I had to have moved off of the L couch because my viewpoint had changed to where I could see the entire bed and I am not sure when I realized what was actually happening. My daddy was dying, and his mom was there to welcome him.

I was ushered upstairs with my brother to watch tv on a small black and white, set with tin foil on its rabbit ears, because mom did not want us to have the memory of the corenor zipping up dad and taking his body away. I did not cry until the end of his memorial service, sitting at the front of church, starring at him laying in a rich oak casket lined in white linens. I started crying hysterically for him, screaming, "I want my daddy, I want my daddy!" I was picked up by somebody who was desperately trying to soothe me, but I did not care because my dad was gone. This was my first memory of grief. People were paying their respects to my mother one by one as I was being passed around one by one, still screaming having a meltdown. The only person who I remember holding me out of the entire bunch was my uncle Johnny. He died from the ALS twelve years later after he thought he had escaped it. My dad's casket was open and I wanted to crawl in, hug his cold body dressed in a heather gray suit with a paisley tie. I want to be creamated, it's cheaper and people don't have to visit a grave. My dad was not around to teach me how to drive, pick a good boyfriend, or help me with my studies. But for the things he couldn't teach in life, through example, he taught me more with his death. Write letters to your loved ones for after you pass, donate your brain and spinal cord to science because ALS research is important, always say, "I love you," because your family is everything, and throw one huge party of the century after your funeral!

"He's paralyzed man, he's paralyzed man,

He can't do, what others can.

He's paralyzed man, he's paralyzed man,

Can't move his feet, can't move his hands!"

-sung by Jeffrey Mishork and his kids

*Help end ALS and Text "YFALS" to 20222 to make a $5.00 Donation to the Young Faces of ALS.

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.

Saturday, March 26, 2011

My Love Story

Two months prior to the doctor telling me I had ALS, I walked out of a six-year relationship with... well l reference him as Double F. I vomit a little when I say his name. I bring this short story up because I lost faith in fairly tale love because of Double F. In a nutshell after two years of suspicious calls on my phone bills made by Double F and after two years of lies, I found his "home made double f videos" on his hard drive and his love letters to "suspicious phone number on bill." I was sick and in shock. Two years of lies. I knew our relationship was rocky and I gave him many opportunities to walk away, but Double F was a coward and stayed stringing me along. After three days of fasting and a few thousand pounds of grief I felt the grace of relief. He hurt me deeply enough that I could proudly leave and turn all the love I was foolishly giving to him, and bestow it back upon myself. Where it belonged. I had to experience this gutterral grief and betrayal because in hindsight the Man upstairs was preparing me for a much greater battle and I was to be given a much greater man.

Jason is the stepbrother of my BFF. I knew of him for about four years prior to us getting together. We maybe spoke a handful of times running into eachother at parties and at my BFF's family events. After moving into my new apartment, Jason and I started spending time together over the usual Starbucks, Cold-stone Creamery, movie, or breakfast at Polly's Pies. He made it very clear that we should just stay friends before jumping in to a romantic relationship because of my prior break-up. He was taking it slow and I was falling in love.

ALS was lightly discussed between us. I was walking funny and told him about my risk, but we were easily able to put it on the back burner and enjoy our little fling. After many dumbass dummy dumb doctors I finally met the one who confirmed the ALS. All I could think of was Jason. How could I do this to him? Put myself in his life just to be taken out of it. Would he even want to hang around with a dying girl? Why would he emotionally invest in a relationship where only heartache is in his future? I was prepared to end it. I was prepared for Jason to walk away from these awful circumstances. I was prepared to never have a committed life partner. I was prepared to die without a marriage, vows, or a family of my own.

When the news of my diagnosis settled I worked up the strength to see him, knowing I might not see him again. It was a crisp November night as we sat next to one another looking up at a clear midnight navy sky with glittering stars. I explained my plans move across state and be with my family. How I would have to be taken care of 24/7 and I would understand if he wanted to walk away from our fling. Overwhelmed with the spirit of living in now, he told me he loved me and gave me our real first kiss. He promised to care for me where ever I went and love me for the rest of his life and hold my hand through the end of mine. He vowed to love me in sickness, in bad times, to honor and protect me. Not until death do us part, but for eternity. Two and a half years later he has left his job, home, family, friends, and moved 300 miles. Holding true to his promises, showing his true love. It was greater than any marriage proposal or exchange of vows. How could anyone compete with that? Then I knew he is my angel sent by God, and all things happen by Him for a reason.

Oh, and in case you were wondering double f stands for f&%# face.

Thursday, February 10, 2011

The Tale of the Twat

Sniff, sniff- ooh time for a shower. In the beginning bathing me had been the duty of my beloved boyfriend Jason. And let me tell you that the best part of being a a quadapeligic are romantic sponge baths from your spouse. But when your mother decides to "help out" with the bathing duties forget about your boyfriend. The early days of team bathing (two or more people are needed to assist), my little sister dressed in her high school swim team suit held me up right in the shower while my take charge mother scrubbed me down with whatever foo-da-fa-fa shower gel sitting at arm's reach. Sitting cold and sudded up it was time for the washing of the bit bits. Uggg. I did not want my mom washing my picachu and was mentally preparing for this moment, practicing humility. By this time Jason checked out for some much needed down time away from his girlfriend. Before I coninue I must explain that during the transfer from my wheelchair to the shower chair my mom got a glimpse of the goodies and exclaimed, "You have a funny looking va-jay-jay! " I was mortified. My mother commenting on my apparently awkward female anatomy in front of Jason! I simply rolled my eyes. The damage was done. Back to the shower. Everything was washed except for my pische and the only other option was a dirty va-jay so go ahead mom. With loofah in hand she went to task. I suddenly let out a pain filled ouch. My mother with a bewildered look asked "what?" I dangerously looked back and said, "Be careful. Did you forget there is a love button down there!" Oops. That is why a boyfriend is better qualified for the bathing duties. The fastest lesson that every PALS is forced to quickly learn is humility, because everybody sees you nakie and some are bestowed the job of bathing your love button.