I Fu$&ing Hate This Disease

The National MS Society is kicking off the 13th annual 3-day, 50-mile Challenge Walk: Charleston Challenge the weekend of March 1-3, 2013. I am planning to be a part of that event by walking fifty miles over three days and raising at least $1,500…OH VEY!

Most of you know my story.  My uncle Bobby was diagnosed with MS in 2002. I was 25 and had just moved home to Kentucky from New York City.  The day I moved into my new apartment in Louisville, was the day he was diagnosed.  But he didn’t tell me that day.  He didn’t tell anyone that day.  He wanted to be normal, so normal was helping me move furniture etc….Something no one who has just had a spinal tap or who has MS should be doing.  But as I’ve learned over the years, stubbornness seems to run amuck with him and nearly everyone I meet who has MS.

When he did finally tell me, I, like so many others, had no understanding of what MS really was.  I thought it had something to do with his back since he had to have a spinal tap!!!  I REALLY had no idea what was going on.

ImageUncle Bobby and Uncle Frank – Crazy runs in the family (notice their demure mother in the background looking at them like they’re nuts)

Here is what I did know: My mom had died of ovarian cancer ten years earlier. When she died, I was so determined not to live with my father (my parents were divorced) that I, Bobby and Alex took my father to court so my aunt and uncle could be my legal guardians…one week after my mother had been buried.  So my mom was dead at 42 and now my uncle was diagnosed with something so foreign to me that I just couldn’t wrap my head around.  I was dumbfounded.  My uncle Bobby was the only father figure I knew and WANTED to know.  I cried and cried and cried when he told me.  And then….because he didn’t falter like my mom, I kind of let his disease move to the back of my thoughts.

ImageMe and Uncle Bobby – 4th of July 2004

But just as he had explained, his disease had a slow progression.  The left side of his body slowly just seemed to let go.  His right calf muscle is enormous and his left leg looks like a chicken bone! He always walks with a cane now and always wears a brace on his left leg.  But unlike others with MS, cognitively he’s okay.  Which means he can still make me crazy and drive me to the edge of a cliff on a regular basis, but I wouldn’t want him any other way.

Fifteen years ago there was not one MS drug on the market.  If you received the diagnosis of MS, the doctor said, get some rest, get some exercise and hope for the best. Today, there are nine disease modifying drugs with a tenth about to released.  Fundraising dollars have fueled the insurgence of disease modifying drugs and it can only get better with your help.

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Alex and Bobby at Tall Stacks in Cincinnati 2006 – He was playing air guitar with his cane….priceless

The Challenge Walk: Charleston Challenge raises money for MS research projects and client programs (40% for important national research and programs and 60% that stays in the local chapter for programs that assist those individuals in this region living with the MS). The funds also help to raise awareness about the disease and to educate the public about the FDA-approved drugs now available which may delay or reduce future disability in many people with MS. Multiple sclerosis (MS) usually strikes adults in the prime of life between the ages of 20 and 50. MS is a chronic disease of the central nervous system affecting the brain and spinal cord, causing blindness, paralysis, and loss of movement. The symptoms are vast and unpredictable, bringing uncertainty to those living with the disease and the future.

 You and I are essential in this movement to create a world free of MS as there are only 400,000 in the United States who have MS; not enough to cure the disease. Rather, we need people like you to join the movement…people who can give their time, treasure and talent.

Help me by making a donation – large or small – to bring us closer to a world free of MS. Or, why not join me the weekend of the event? Become a participant and side by side, as teammates, we can work together to raise the funds to make a difference.

Click here to visit my personal page.

 

1997

In addition to being a trucking dispatcher, I was also a Barista at Starbucks.  It was the VERY first Starbucks in Cincinnati.  I had never even heard of Starbucks….the year was 1994.  So one day I’m standing at the counter and I see this really tall guy walk in with plaid pink shorts and a pink polo shirt on.  He was with his girlfriend and walked straight to the back to talk with a friend of mine.  I watched him from the moment he walked in to the moment he left.  I think I said something to him but I really can’t remember.  I think my mouth was closed but I can’t remember that either.

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Starbucks 1994

Some things happened…I moved to California…back to Cincinnati….spent time in Chicago…back to Cincinnati….and again back to the University of Cincinnati.

I love history, specifically Art History and Ancient Greek History.  The first day of my Ancient Greek History class I go to the front (as usual because I’m kind of a nerd) and this guy is super friendly and says Hi to me and acts like he knows me.  I’m all grumpy and suspicious as usual and disregard him.  For one thing, at the time I was engaged to my first fiancé (which is a whole other story).  Several weeks go by and finally this guy says you don’t remember me?  I’m my usual bad ass self and say…umm…NO.  And I’m sure you guessed it, he was the guy from Starbucks.  I thought I was the one staring in Starbucks, but apparently he was staring too and I was clueless.

This is only the beginning of this story.  This guy…this Starbucks guy…he and I were on and off for nearly ten years.  He was my third fiancé.

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Aunt Alex, Uncle Bobby and Me at their 40th Birthday Party
1997

1997 was the most dynamic and moving year of my life.  It was the year I called off my first engagement because the guy was arrested for domestic abuse against his mom and for writing bad checks from Miami, Florida all the way to Cincinnati.  It was the year of such a major milestone that I can’t write about it just yet, at least publically.  It was the year I turned 21. It was the year my aunt and uncle turned 40.  It was the year Princess Diana died.  It was the year I got into such a big fight with my best friend that she and I didn’t talk for nearly a year.  It was the year I had a kidney infection so bad that I was hospitalized for three days.  It was the year I was fired for the first time.  It was the year of the Horde Festival in Chicago.  It was the year I was humbled.  Let’s just say it was a year of a lot of firsts.

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July 30, 1997 – My 21st Birthday
Me, Nikki and The Starbucks Guy

This one time…I thought it was a good idea to be a trucking dispatcher…

This one time…I thought it would be a good idea to be a dispatcher for a trucking company.  I went from working at the Museum of Modern Art in New York City to working as a trucking dispatcher in Louisville, Kentucky.  The woman I worked for was a lunatic but taught me a very important lesson on how NOT TO BE.  She cried on the job.  She was emotional.  She was erratic. She didn’t know if she was a lesbian or not.  I think she tried being a lesbian because men had rejected her so much.  She made me never want to work for another woman again.

I was waiting tables at a French restaurant and she offered me a “desk job” so I leaped at the opportunity.

The drivers only had a few complaints… my clothing was too revealing and my mouth too dirty.  REALLY?  My mouth was offensive to the drivers?  What a bunch of fucking pansies.

Redbirds and Mars….Who knew they had things in common

So this one time, I got engaged to this guy from upstate New York.  I met him while I was bartending at a dive bar in Covington.  He was French and spoke fluent French and Spanish AND he was a chef.  Just put a sold sticker on me and ship me off…I was done.  But neither one of us wanted to stay in Covington or Cincinnati so he went searching on the internet for someplace cool to work.  He found a place in Wells, Maine.  The gig was supposed to be six months in Maine, six months in St. Thomas…um…another no brainer.  Sold.  So we packed and started driving…  Now a lot happened in-between that but I’m just getting to the part about me working in a Martian themed restaurant in New York City so I’m skipping over some stuff.

So from Maine we didn’t move to St. Thomas…they had an enormous hurricane that year and the hotel was badly damaged.  So we moved to his parents cabin in the Catskills for a bit and then to their apartment in Queens.  So…there were four people living in a one bedroom apartment with one large dog and one fat cat.  And I was a little girl from Kentucky now trying to find a waitressing job in New York City.  The only public transportation I had ever taken in my life was the bus in Covington, KY to visit my mom while she was working in downtown Cincinnati, OH.  It’s a straight shot.  One bus.  No transfers.  Easy breezy.  And now…I’m walking four ENORMOUS blocks from the apartment to the subway and trying to figure out my way around.

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 Redbird 7 Train, NYC – By the way, I’m so old they’re no longer red…And they have a museum for the old red trains….OY VEY!   

I figured the easiest way was to just get on the 7 train and take it until it dead ended into Times Square.  There had to be jobs around there right?  What no one tells you though, is that without NYC experience, no one in NYC wants to hire you.  So how the hell am I supposed to get experience??  At a Martian themed restaurant, that’s how.  That’s right….I said, “Vabanu Earthlings” on a regular basis and wore a space captain outfit in Times Sqaure.  Talk about some life changing experiences.  BUT… I did meet some amazing people that I STILL keep in touch with thirteen years later.

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 *Note: This restaurant recently closed down in Jan. 2012; however, it represents an important cultural milestone and historical monument to New York’s willingness to trick unsuspecting tourists out of money.

Doesn’t everyone have perfect attendace in school?

During my freshman year of high school my mother was diagnosed with Ovarian Cancer. She knew she had the cyst in December (probably earlier) but waited until February to do anything about it. She had just gotten a new job and waited until her health insurance kicked. She had surgery almost immediately and was in the hospital for a week. I even wrote a paper about it. Anyway, she did chemo throughout the summer etc…

Tom and Mom Cropped

Tom and Mom (I was the first grandchild and my grandfather felt being called grandpa made him seem old.  I was supposed to call him Mr. Tom but I wasn’t too good with my r’s…so he was always Tom).  

That summer I turned 15. July 30, 1991. She went in for another surgery on July 31, 1991. I thought this time they would get everything. They would get rid of the cancer. But that was not the case. She finally came home from the hospital around the end of August I think. When she came home I thought it was going to be great. No one told me however that she was essentially coming home to die. When I came home from school there was a hospital bed where the dining room table used to be and my 70 year old grandmother was feeding her 42 year old daughter. It was awful. She died Thursday September 26, 1991. It was early evening. I remember I was upstairs on my bed with my friend Kara doing our chemistry homework. My uncle Bobby came upstairs to tell me my mother had opened her eyes. I ran downstairs. My uncles from Florida and Texas had flown up, my uncle Bobby from across the street was there, my grandparents were there, my aunt Alex was there. She moved her head from side to side. Her face sunken- in. Her skin was pasty. Her mouth was open as if she was trying to speak. I remember it quite vividly. Finally her eyes closed and they never opened again. My uncle Frank said, “I think she’s gone.” That was it. It was peaceful. All of us standing around her bed. I was on her left side standing next to my uncle Bobby. I broke down on his shoulder.

My grandfather was a physician so he knew to make sure her jaw didn’t drop from rigamortis. He took one of her scarves and tied it around her head. So there she was…for several hours it seemed…dead in the dining room with a peach scarf around her head to hold her jaw in place. I can’t really remember them taking her body away. I slept in my own bed that night. I went to school the next day. I had perfect attendance that year at school. Her visitation was on Saturday and her funeral on a Sunday. I went to school on Monday.

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Mom, Grandma and Tom. This was us moving into our new home after the divorce from my father 🙂

I’m Italian….And If You Believe That I Have A Bridge I Can Sell You Too

I told my mom time and time again to leave my father.  He was mean to her.  He would tell her to loose weight, boss her around etc…I couldn’t understand her attraction to him.  He was way overweight, ate like a slob, dressed like a pig.  He was disgusting.  He was dark.  He greased his hair.  He wasn’t close to his family.  He in fact never really spoke of them and certainly never went to visit.  He hated where he came from.  He made stuff up about his family.  He said he was Italian.  And he really made me feel the Italian pride.  It must have drove my mother crazy.  She knew he wasn’t really Italian…and if he was he certainly wasn’t raised as such.  He was raised a black man in Norfolk, VA.  Anyway, the second child never came.  And she did divorce my father.  And he was devastated.  But really I can’t see how he didn’t see it coming.  She tried repeatedly to tell him how she was feeling but he disregarded her.  And to his credit, she did have a tendency to bottle her feelings up inside.  Until one day she just burst.  She couldn’t take it anymore.  At least that’s what I tell myself.

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 Uncle Cliff (my grandmothers brother) and Me

One day several years ago one of his sisters emailed me.  I was adamant and told her …if you are trying to get me to talk to my dad, forget it.  If you are emailing me to get to know me, well then that’s great.  Come to find out…his family was awesome.  I mean really really awesome.  And he lied and lied and lied…. What a dumbass.

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Aunt Lucy, Me and Aunt Eleanor Continue reading

Loving Me

Love weirdly
Love me wholly
Love me with your arms
Love me with your words
Love me with your hands
Love me with your kisses
Love me with your eyes
Love me like a slow afternoon
Love me like a spring thunderstorm
Love me like a Christmas snowstorm
Love me like a crisp fall day

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Being A Misfit

I was a misfit for a number of reasons.  My parents were divorcing, I was AT LEAST a foot taller than everyone, I was dark complected, I had crazy dark hair, big bushy eyebrows, large lips.  I was outspoken, from the other side of the river, and didn’t fit into the mold at all.  I was actually kicked out of the school in 6th grade.  I wrote a bunch of curse words in a friends yearbook and the girl’s mother called the principal. The principal called my mother in her office and said people send their children here for two reasons.  THIS I REMEMBER VIVIDLY.  One is to give them a superior education and the second reason is to shield them from children such as yours.  So I got kicked out.  I remember my mother frantically calling schools to try and get me into another school.  Can you imagine?  The stress it must have caused her?

 

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Me at 13 burning my catholic school uniform.  Did you know those darn things are flame retardant   It didn’t burst into flames, it turned to tar.

Being Born

The day I was born was a strange day.  I was two weeks late.  It was July 1976 and I can only imagine it was terribly hot.  My mother was very sick of being pregnant for sure.  So she decided to help things along.  She walked across the Roebling Suspension Bridge from Covington, KY to Cincinnati, OH to watch a Reds baseball game…quite common back then to walk across for games.   Then she decided to eat some peanuts, have a beer (she never drank) and walk back across the bridge to the car.  That’s when I decided to make an appearance…I mean beer was being served, I didn’t want to miss that.

So apparently, my parents then drove home.  I’m not sure where they were living at the time but they went home and got their basic hospital stuff.  My grandparents got in the car and the story goes as soon as all four were in the car, my grandmother thought they would be there awhile so she went back inside to get a book.  When she came back out, my grandfather then he thought he should get a book.  This was quite unbelievable to my parents as you can imagine.

I’m not sure what exactly happened after that but my birth certificate says I came into the world on July 30, 1976 at 3:21AM.  Wouldn’t it be nice to remember your first memory?  Strange thought isn’t it?  What I do remember as a child is only bits and pieces and then sometimes you have to wonder if it’s your own memory or someone else telling you what happened.

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Me and my beautiful momma, Katherine.