Eyes Wide Open

A Perspective From Within


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Top Chef Miami

One thing that I truly miss is cooking and throwing fabulous dinner parties. Those that know me will firmly attest that I’m all about food, cooking, and entertaining…it’s borderline an obsession. Not only do I love to create amazing experiences with food, whether just for me, a group of friends, or for the masses, I continuously immerse myself in the pop culture of food, recognizing that it is not only something that we eat to sustain life, it is something that defines us. People that love food are naturally drawn together and its no coincidence that many of our friends are either in the food business, are food obsessed hobbyists, or both. We tend to stalk people like Thomas Keller and Mario Batali rather than the Kim and Kanyes of the world.

While growing up in an Italian restaurant business family, and tugging on the apron strings of the best cook in the world, my mother, food was obviously a big part of our livelihood and our social situations. Like the Italians say: ” A tavola non si invecchia. Translation: At the table with good friends and family you do not become old.” So beautifully said.

This horrible injury didn’t just affect the use of my legs, but also my hands. I lost the function in my left hand, and have very limited function in my right hand. There are some days that i feel like i have dog paws rather than hands. You never realize how important fingers and hands are until you don’t have them. Without hands functioning, it is pretty much impossible to do the things in the kitchen that I used to do. I’m not talking about making a roast or cooking a chicken. I’m talking about very complex recipes that require fine motor skills just do the mise en place and the agility in the kitchen to work on 3 things at once. Outside of walking, not being able to create in the kitchen was probably one of my greatest losses.

A while back, I had promised our friend Bob Serpantini that I would give him a lesson on how to make an old family recipe called Pizza Nostra. I made this pizza just about every time I had people over. It was my go-to appetizer, snack or main course. I haven’t met one person who disliked it. It was like crack. People could not get enough of it. I’m not ashamed to say that I would often times have it for breakfast the next day, even after it was left out on the counter all night, unrefrigerated. I wasn’t about to waste this precious treat and wasn’t afraid of a little bacteria. Although the pizza itself was very simple and called for only a handful of ingredients, there were many nuances to the technique, and the specifics to the ingredients could not be deviated upon. Bob said he would do all of the prep and I would give the step-by-step pizza making instructions.

The plan was coming together. Bob got the dough from my brother’s restaurant in Akron and flew it down with him, and I had my very old and seasoned pizza pans (previously used in our family’s restaurant) FedEx to me. These aged and beautifully seasoned pans were probably just as important as dough itself. Ross made sure that I had all of the very specific ingredients on-hand: canned San Marzano whole peeled tomatoes, freshly grated Pecorino Romano, fresh basil, purple onion, dried oregano, garlic powder, and really good olive oil. We scheduled an evening to make the pizzas, and my much anticipated opportunity to get back in the kitchen was finally coming to fruition. Bob and his wife Kathy, their son Ryan (who lives in Miami), and Ryan’s roommate Jeff came over for the Nostra lesson. Our friend Jason who is also our attorney, was staying with us that weekend and doubled as our videographer. There was a lot of wine flowing so the lesson most certainly needed to be documented.

The finished product

The finished product

We had loads of fun that evening, and I was actually able to forget for a bit that I had these major obstacles to overcome. The next installment to the Italian cooking series will be how to make perfect meatballs and Sunday sauce. This session might require a little less wine and a little more instruction!


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Dear Kim Kardashian

Dear Kim,

First, please allow me to congratulate you on the recent news of your pregnancy. How exciting for you. You must be glowing and overjoyed, but was this such a newsworthy event that it needed to be announced in every media outlet known to man. Unless you’re Amish, you’ve heard about it in some way, shape or form. Kim, I’m not sure if you will read this or not, but if you do, please make sure that you have someone around to help you with the big words.

Now Kim, I know this is hard for you to swallow, but you are not giving birth to Jesus. And furthermore, being married to one guy, dating another and then getting knocked up all at the same time, puts the K in Klass. Being called baby mama just puts icing on your white trash cake. You really are no better than Honey Boo Boo. At least Honey Boo Boo and her mother are keepin it real. The ONLY positive thing that has come out of your life as a media whore is that now we don’t have to see Paris Hilton with that stupid nervous little rat that she carried around. You’ve knocked her out of the spotlight like Tom Brady getting sacked. Thank you for that. Now I wish for you to go away. There is not enough Zofran in the world to keep me from being nauseated at the sight of you. No words can describe your flagrant and shameless display of wealth that is thrown in everyone’s face, day in and day out. You see Kim, I’ve had a lot more time on my hands that I’m used to. It is difficult for me to do the simplest of things in life right now. Your fabulous life is in my face all of the time and I’m sick of it. I can’t turn on the TV or my iPad without seeing you, Kanye or another member of your PR seeking gene pool you call your family, doing something stupid and mundane while carrying one of the several Birkins that you own. You and your family obviously posses the K chromosome, a newly discovered rare chromosome that breeds greed and self importance. If your momager could put your name on it and sell at Sears, she would.

Your 72 day publicity stunt that you refer to as a marriage is gross. The wedding itself was way over-the-top and excessive. Truthfully though, I really didn’t mind that…I appreciate a well executed party, but I really wish that you would start to be honest. We all know that you got married to make money. It was the Pièce de résistance of appearances for you. People probably would have more respect for you if you would come clean. Stop trying to convince yourself that it was for love. The fact that you actually had a gift registry is so bizarre to me that I still cannot wrap my head around it. You have so much, and still ask for more. How much will be enough for you? The amount of money that you made off of that wedding could have really helped many in need. An “in lieu of gifts please donate money to XYZ charity” should have been prominently displayed on your invitation. You make soooo much money on your stupid endorsements. Once again, how much is enough to keep the Kardashian machine running?

You say that you have a brand but I still can’t figure out what it is. I get it, you make a lot of money putting your name on things. You practically own the E Network and have Ryan Seacreast on-call 24/7 as your bitch. That alone is a force to be reckoned with. I understand diversification, but you guys have really taken that to a different level. You will endorse a half eaten sandwich if there was enough money in it for you. Endorsing cupcakes, a $25 lollipop, a laser hair removal machine and Quicktrim is not at all a conflict of your brand promise. Oh, let’s not forget the Kardashian Kredit Kard…epiK (lol) failure. What is your brand promise anyway? Let’s not forget the common denominator in all of this. Having the highly lucrative opportunity to get paid to put your name on anything and everything is really because of the sex tape. There’s no debate. Please just admit that fact and you will get a lot less criticism.

Why do people kiss your ass so much? All you really have to offer is that bulbous ass of yours. There’s nothing ever brilliant or profound that comes out of your mouth EVER. Quite the opposite. My favorite phrase of yours is when you compare the decision to film your wedding for the E Channel with the struggles of a girl with cancer. Thanks to the beauty of the internet, I found the quote verbatim. Kim, it’s priceless:

“We decided to film for the wedding. And that was a decision that he and I made together. But I think that, with any decisions in life, like, I spoke to a girl today who had cancer and we were talking about how this is such a hard thing for her, but it taught her a big lesson on who her friends are and so much about life. She’s 18. And I was like, that’s how I feel.”

After your announcement of the end of your 72 day marriage, you claimed you shifted your focus to “the simple things” in life.

“I’m such a different person today, I care more about the simple things. You really figure out what’s important in life. I value time more. Staying at home, doing nothing, cooking in. It’s not all about the glitz and glamour of a relationship.”

I’m sorry, when did this shift in priorities happen? You tweeted photos of your most recent trip to Cartier in Paris, proudly displaying a wrist full of bracelets, totaling around $70k. Did Kanye get you these for the Kimbryo? Why can’t you just keep that shit to yourself? Don’t get me wrong, if someone wanted to buy those for me, I wouldn’t say no, I’m just not going to be in your face with it.

Kim K Cartier Bracelets

Kimbryo gift

Finally, lets talk about your fashion sense, or lack there of. I cannot even imagine what you spend on clothes, but 99.9% of what you choose are either horrible combinations or look really bad on you. Stop wearing the peplum shirts. They just do not look good on you. Also, your clothes look like sausage casings. Did you have to jump from the 3rd floor balcony while someone below was holding your outfit? If you have a stylist he/she should be fired; If you don’t, hire one immediately. The picture below is completely unacceptable. I can’t even comment.

Kim K wearing a bra shirt and a pencil skirt sans Spanx

Kim K wearing a bra shirt and a pencil skirt, sans Spanx

Also, why do you have to be so dressed up while shopping or running around in the day? You always look like you’re going to a cocktail party or wedding while Kanye basically wears his uniform of jeans and expensive sneakers. You look stupid. Furthermore, stop wearing loads of smokey eye makeup in the day and back off on the contouring. When its done well, contouring can look great. Yours is starting to look like a raccoon mask on your face.

I could go on and on but I won’t. Kim, take the money and go away. Don’t try to be some sort of ambassador, thinking you can make peace in the Middle East. Stop filming yourself in exotic locations that are $20k per night, acting like you’re just one of us. Enough is enough. Get out of everyone’s life and start being real. And a courtesy reminder to you, this could all go away when you least expect it…just saying.

Kind regards,

Mary Vaccaro


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The Miami Project Human Trials Have Begun!

I wanted to share this letter that Ross just received today from Nick and Marc Buoniconti regarding the first transplantation of the Schwann cells in a human! This is HUGE news for people with SCI. A cure is not too far in the horizon!

WE’VE BEGUN

Dear Friend:

This has been one of the most exciting days ever at The Miami Project and The Buoniconti Fund! As one of The Miami Project’s biggest supporters, I wanted you to be one of the first to know that Miami Project doctors and scientists have performed the first ever FDA approved Schwann cell transplantation in an individual with a new spinal cord injury.

The transplantation procedure was conducted by Drs. Allan Levi and Jim Guest. The participant had a neurologically complete thoracic spinal injury and received the transplantation of autologous Schwann cells approximately 4 weeks post-injury. There have been no adverse events and the team is moving forward with the trial. The procedure is a Phase 1 clinical trial designed to evaluate the safety and feasibility of transplanting the patient’s own Schwann cells.

“This historic clinical trial represents a giant step forward in a field of medicine where each tangible step has tremendous value. The trial and these first patients in this trial specifically, are extremely important to our mission of curing paralysis,” said Dr. Barth Green, Co-Founder.

“The Miami Project team includes hundreds of scientists, clinicians, and technicians who have joined hands to make the ‘impossible possible’, for which this trial is a key goal and dream now being realized. This achievement reaffirms that the tens of millions of dollars and the incalculable work hours were well invested in this first of a kind human Schwann cell project.”

Led by Miami Project Scientific Director Dr. Dalton Dietrich, the Schwann cell clinical trial team at The Miami Project is composed of a multi-disciplinary group of basic science and clinical faculty members, scientific staff, and regulatory personnel focused on advancing the trial.

“As a basic scientist, the hope is always to increase knowledge and discovery. Not every day are you able to see that translated into the clinical realm with the hopes of bettering the lives of those suffering, so this Phase I clinical trial is a vital step for the field of SCI research, and for The Miami Project team that has been working diligently on this therapeutic concept for more than a quarter of a century. This trial, when completed successfully, will lay the critical foundation for future cell-based therapies to target spinal cord injuries,” said Dr. Dietrich.

Because of YOUR support and the dedication of our scientists and doctors, a cure for paralysis is on the horizon. No longer are we just talking about cells in petri dishes with the hopes that some day in the distant future they could be translated into a possible new therapy. Today, we are actually operating on people and testing the safety of Schwann cells in people with a spinal cord injury.

This is such an exciting time at The Miami Project and I hope we can count on your continued support. Thank you for believing in us.

Sincerely,

Nick Buoniconti
Marc Buoniconti


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imageSince the injury, my social life has been practically non-existent, partially because of my insecurities. The only time I really go anywhere is when Ross is here on the weekends and we’ll grab an early dinner at Smith and Wollensky, which is on the water right behind our building, or the Patio restaurant, conveniently located on the property. The nice part of going to a restaurant is the fact that most everyone is sitting down. Being at eye level creates an equal playing field for me when I arrive. I don’t feel like everyone is staring down at me. On the other hand, while in a crowd of standing people, being in a chair can be very overwhelming and uncomfortable and I usually start to feel dwarfed and claustrophobic.

Cut to…our condo’s cocktail party. Opulence Magazine sponsored a really nice event last week for all of the residents. The night featured food from some great area restaurants like Milos, a really wonderful Mediterranean place, and My Ceviche, a delicious best kept secret which is about as big as a broom closet. Also included in the evenings lineup was a mini fashion show from Saks, a display of fine art from some very notable artists and a selection of some in-your-face iced out watches that looked like they came from Lil Wayne’s watch collection. I thought going to this party would not only be something fun for me to attend but also would be easy for me logistically since they were having it in the lobby downstairs. The path of least resistance is my motto these days. Also, if I got tired or if the party was boring, it would be easy for me to make a quick escape. Ross was unable to attend with me since the party was during the work week. I didn’t want to go alone so I invited my good friend Paul Himmel-a fellow Akronite living in Miami and working as a DJ at various clubs around town, Derrik Tarver-my newer friend who is a pro basketball player across the pond, and Anthony, a professional model friend of Paul’s who just happened to be in town shooting an underwear ad for Kohls. A DJ, the model and an athlete…this was was my entourage.

Arriving at the party, I had the usual feelings of inferiority and intense claustrophobia along with a few pity stares thrown my way. It didn’t matter how great of an entourage I had, it was still me in the chair, feeling very different from everyone else. Dealing with these feelings is no doubt something that I continue to work on. I certainly do not want to be that person who locks themselves away because of fear and insecurity, eventually ending up on the show Hoarders. I know I project an air of confidence, but inside, I feel like I’m a house of cards that can easily collapse from the slightest look. Little did I know that my vulnerable house was going to be threatened that evening by a classless and ignorant self proclaimed Palm Beach and Upper East Side B-list socialite countess wanna-be and trashy paperback romance novel author who married unbelievably wealthy 3 times over. How was that for a description? Oh, and she also looks like “The Joker”. Now that you have a visual, let me explain the reason for my disdain. I was having a nice conversation with someone from the building when without notice, a gold handbag gets plunked on my lap. The Joker that did the plunking bends down over me and quickly asks if I can hold her purse so she could be in some pictures. Before I could even process an answer, this obvious media whore was already 6 steps away from me, getting her picture taken by some photographers from the magazine.
Ok, let me break this down because there are so many levels of stupid that this women touched on.

1. Watching or holding a strangers belongings: No, I’m not so paranoid that I thought there was a pipe bomb in her purse, I just don’t make it a habit to hold or watch a strangers belongings. It’s really not a smart idea. This reminds me of a time that I was at JFK a few years ago waiting for my flight, when the guy seated next to me asked if I could watch his bags while he went to the bathroom. Obviously, this guy must not have gotten the memo about 9/11 and the heightened airport security. Clearly he has not heard the recorded message played every minute of every day throughout every airport on this very subject. He probably just forgot that a couple of planes highjacked by some radical terrorists flew into the World Trade Center killing thousands of innocent people. Slipped his mind. My response to him was “you’re joking, right?”. He wasn’t joking and was pissed that I wouldn’t watch his bags. Dumb ass. Go Greyhound next time. I could go on about this, but I won’t.

2. Ask permission before you act: Shouldn’t she have requested permission from me before assuming that violating my personal space would be ok? Permission should have come before the plunk.

3. I am not your coffee table, I am a person. Have I made myself clear? There was a table a few steps away from the Joker. What prevented her from using that? More interestingly, what drew her to the girl in the wheelchair to be her accessory holder? While I’m down here, perhaps I could shine her shoes or hold her coat. In her frenzy to be recognized and photographed, did the flash temporarily confuse the parietal lobe of her brain and she really thought I was a coffee table? I always like to give everyone the benefit of the doubt…

4. If i’m going to hold anyone’s purse, it better not be a piece of shit: This is self explanatory.

When the Joker came back to pick up her bag, I had a few words prepared for her. I calmly said that I was sickened by her lack of awareness of peoples’ feelings and that I was absolutely appalled by her classless and vile behavior. I handed her the piece of shit bag and turned around to resume my conversation. This idiot came back for more about 30 minutes later, handing me her trashy paperback novel like it was an olive branch, pleading for me to not be mad at her. She told me that she really wanted me to have her book. Naturally, I gave the book back and told her to leave me alone.

image

After the party, I couldn’t wait to write about her. I was ready to post her name, the numerous pictures that I found online of her (one, more stupid than the other), the ridiculously narcissistic bio in her book and many other pieces of info about her that would serve as fodder for my writing, but I decided against it. Really, what would that accomplish? I will have to deal with people like her again, and probably when I least expect it. Unfortunately, stupid people are all around us. They come in all shapes, sizes and colors. Stupid doesn’t discriminate. I came across this quote from American Psychiatrist Thomas Szasz which struck me as quite powerful: “The stupid neither forgive nor forget; the naïve forgive and forget; the wise forgive but do not forget. “

Does This Wheelchair Make Me Look Fat?

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Ross Marchetta and Mary Vaccaro

Ross and I on the red carpet

Lately I’m finding it a bit difficult to write about new things in my life when everything has been pretty much the same for a while now…terribly uneventful. Go to therapy, come home, repeat. I do however, want to talk about my first official outing in November where I actually had real clothes on that did not have an elastic waist or an Adidas logo. I also had my hair and makeup done by a professional. It was the first time in months that I felt semi-normal. The event was called “Destination Fashion”. It was an event for The Buoniconti Fund to Cure Paralysis, which is the fundraising arm of The Miami Project to Cure Paralysis. The Miami Project is the main reason why I am down here. Just to give you a little background, In 1985, Barth Green M.D. (my doctor) and NFL Hall of Fame linebacker Nick Buoniconti helped found The Miami Project to Cure Paralysis after Nick’s son, Marc, sustained a spinal cord injury during a college football game. Today, The Miami Project is the world’s most comprehensive spinal cord injury research center with 250 scientists, researchers and clinicians who take innovative approaches to the challenge of spinal cord injury. Because of their work and the dedication, in July of 2012, the FDA approved human clinical trials that involves the testing of Schwann cell transplants in humans with acute and chronic SCI. This is very exciting news. Hopefully I can be a part of this in the near future. I don’t want to bore you with details. You can learn more about it if you click on this link: http://www.themiamiproject.org/page.aspx?pid=339

Me after my makeover with Sydney

Me after my makeover with Sydney

Anyway, back to Destination Fashion. More than 2000 guests attended the event that was held at Miami’s Bal Harbour Shops. The night featured an exclusive presentation of Emilio Pucci’s Spring 2013 line designed by Peter Dundas. The collection came straight from Milan fashion week and had never touched American soil. Following the fashion show and sit-down dinner, there was an interactive destination party experience and private concert by Enrique Iglesias. The concert was amazing. Tom Brokaw hosted the evening, and was chaired by actor Tommy Lee Jones and the extremely hot international polo sensation and face of Ralph Lauren’s Black Label, Ignacio “Nacho” Figueras. There were a bunch of other celebs there to, but really, Nacho is all I cared about. Total eye candy. I have been to many charity events in my life, but nothing like this.The execution was flawless, the tablescapes were stunning and the food was really good. The filet that was served wasn’t the typical overcooked prison grade meat served at many of the events that I have attended in the past. There was also a beautiful antipasto which had the dual purpose of the first course and also as part of the centerpiece. The runway for the Pucci fashion show was set up like a maze all throughout the dining area. We were practically sitting on the runway and could almost touch the pale and anorexic models, that’s how close we were. Many of the stores in the Bal Harbour Shops generously donated luxury items for the silent auction. There were no Akron Aeros tickets or hot air balloon rides at this auction. Items like a Cartier watch, a one of a kind Fendi bag and a trip to Tuscany were up for auction to the highest bidder. The event raised a staggering $31 million for The Miami Project, partly as the result of an especially benevolent and kind donor who made a huge announcement that night. Christine E. Lynn announced a gift of $25 million that would go to build a state-of-the-art spinal cord injury surgical suites, surgical intensive care units and rehabilitation center. The announcement was truly a shock to the crowd. This same women donated $10 million to The Miami Project last year. My God, how much money does this women have? I googled her the next day and her name is prominently displayed on several buildings and wings. You have to have some major dough to have a building named after you. This women has it.

The shoes

The shoes

This event was really the first time that I had been outside the 1000 feet radius of the Continuum property since I got out of the hospital. I had finally taken myself out of the mental house arrest that I had created for myself and became part of the living…at least for one night. As soon as Ross told me about the event and that he wanted to support it, the pressure was on to find something to wear that would not make me look like a cow on wheels. I quickly discovered that clothes are not designed for the seated. I had a few things sent from home and after trying them on, found that they that looked absolutely hideous on me while seated in the chair. I had such a great wardrobe at home…kiss that goodbye. This was definitely going to be a challenge for me. After several trial and errors, I found the perfect dress. I had my killer YSL platforms sent from home to finish the outfit. I bought these shoes two months prior to the accident and only wore them once. I was always afraid of scuffing them or scratching the gold on the front of the shoe. I find it completely ironic that now I no longer have to worry about ruining a great pair of shoes because they will always stay looking brand new.

Peter and I | Us with Emilio Estefan | Me, Ross and Dr. Green

There was a tremendous amount of preplanning for me to do in order to execute a perfect look for the event. Being a quad in a chair poses many difficulties with fashion and many other things that I won’t go into right now. I had the whole cathe thing to deal with that night. Since I had to get cathed at 8 pm I had to take one of my caretakers with me. Most people slip off to the restroom, I had to roll off to the limo. I got a professional makeup artist that does runway, print and celebs. He also styles hair. I desperately needed someone to help me look good cuz I was a mess. The man for this big job was named Sidney Jamila…I call him simply, my savior. He is also absolutely adorable, so incredibly kind and extremely talented. During our pre-meeting to discuss the look that I was going for, I had to open up the conversation to exactly what celebrities he’s worked with. Inquiring minds wanted to know. When the name “Lenny Kravitz” came up, I froze. Could someone who has touched the face and hair of Lenny be touching mine? This really is six degrees of separation. My friend Lisa and I worshipped that man years ago. I still have a Lenny playlist on my iPod. I love his music. Back then, it was so upsetting when he started to date and then go on to marry Lisa Bonet. Bitch (just kidding). Of course I started gushing to Sydney about Lenny like some of my friends’ young children talk about Justin Bieber. Lenny was my Justin, just way cooler with a much better voice, more talented and who doesn’t wear meggings (male leggings). Justin Bieber always has those stupid “I Dream of Jeanie” pants on. It’s completely ridiculousness and they should be burned, every single pair of them because I’m quite certain he has multiple pairs. Selena Gomez should be embarrassed. Ok, I digress. I’m not 12. Back to this 44 year old’s story. Sydney arrived with an assistant on the day of the event and brought enough makeup for this beauty junkie to be high. We totally hit it off, talking about our favorite beauty brands, new makeup techniques, Sephora etc. He wanted to set up shop in the living room because of the lighting situation, so I didn’t have the luxury of having a full mirror in front of me to soak up the techniques of the master. It absolutely drove me crazy not to be able to see what he was doing. Then, somewhere between the primer and concealer, he told me that just the day before he styled Lenny for some sort of Oprah life course BS show…and that Sydney mentioned me to him. I almost fell out of my wheelchair. The name Mary Vaccaro graced the eardrums of Lenny Kravitz. OMG…

The evening was a blast. Lots of great memories. I had such a great time time with Ross and our friends that came to Miami just for this. It was, however, incredibly strange and uncomfortable to be in a massive crowd when you are the only person sitting down. Going through the crowds of people felt at first like salmon upstream, but quickly turned into Moses parting the Red Sea. People tend to go out of there way to make room for a person in a wheelchair. When they don’t realize that you are trying to get through and someone has to tap them on the shoulder to tell them to move they become so apologetic that it is borderline uncomfortable. That sort of situation reminded me of the hilarious episode of Curb Your Enthusiasm where Larry David starts dating woman in wheelchairs mostly out of guilt, but realizes he gets to take advantage of some of the perks (if that’s what you want to call them). It’s from Curb Your Enthusiasm: Season 7, Ep. 5 called “Denise Handicap”. I know most people would find this offensive. I thought it was completely hilarious. It’s worth a watch. Poking fun at this horrible situation that I’m in is one of the key coping mechanisms that I have. Isn’t laughter supposed to be the best medicine?


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Auld Lang Syne

I haven’t posted anything for a while and I wish that I could blame it on the hustle and bustle of the holiday season. I would be lying if I said that was the case. Honestly I’ve just been in a funk. Sorry in advance to all of those people who I have not called back. It’s not you. It’s me. I have to say however, that my Christmas Eve and Christmas day really were beautiful thanks to Ross. He brought me out of that funk. He spends an extraordinary amount of time making my life more comfortable and less burdensome while taking my mind off of this hellish nightmare. He’s always so positive with me and is the first to brighten up my dark days. I am too quick to forget that he’s going through this nightmare too. I don’t know how he does it. He’s amazing.

It’s hard not to reflect on what a shitty year this has been for the both of us. I’m waiting for a producer from the E network to suddenly walk in and say that this was just one big reality show and they are finished shooting. Oh, and by the way, you can walk now. One of the most difficult things that I have had to endure is to go from an extremely busy and rewarding life to one of physical struggle, monotony and boredom. This time of year is usually nonstop for me as it is for most. Putting together our annual Christmas Eve open house always occupied a lot of my time, so much that I would start the planning process at the end of October. We always had around 100 family and friends over to eat, drink and be merry. It was always such a wonderful night. I miss that time. I miss being busy. I miss the feeling of not having enough hours in the day to get things done. I desperately miss challenge in my life. Challenge in the gym. Challenge with creativity. Challenge in the kitchen. The list is endless. I want back those simple things in life, like jumping in shower, getting dressed standing up rather than by laying in bed and the choice to plop down on the couch after a long day. I loathe having to be taken care of. I am always at the mercy of someone to help with the simplest of things. When I am getting ready for my day, I disappear to another place in my head so as not to be aware of my own miserable existence, and the fact that someone is showering me and dressing me. I have lost my autonomy. On the days that I don’t have therapy, I die a slow death. Idle time for me is like Kryptonite. I quickly start to think about all of the things that I have lost due to my physical disability. I think about all of the things that I loved to do and that I want to do but am just not physically able to do anymore. Kickboxing, skiing, cooking…all gone. I want to be “me” again, not this f-ed up broken version that I have become. Everyone tells me how strong I am and if anyone can make it through this, I can. Please tell me…what really is strength because I’m struggling to find it. BTW, if I hear the line, “God only gives you what you can handle” one more time, I will scream. It’s easily the #1 most over utilized phrase when faced with a tragedy. I’m sorry, but that’s just BS. I also love “There’s always someone worse off than you”. Did you ever wonder who’s worse off than the worst? Poor bastard. Nevertheless, I hope and pray that 2013 will be a much improved year filled with happiness, breakthroughs and better health.
2012…don’t let the door hit you in the ass. Hasta la vista, biaaatch.


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HOMEland Insecurity

I have been out of the hospital since September 1st 2012. Adjusting to life on the outside wasn’t easy at the beginning. I can understand why it can be difficult for inmates to adjust to life out of prison. At least while I was in rehab I was with people who were just as screwed as I was. Some even more screwed. At any rate, it was the “misery loves company” scenario. There was also a sense of safety and security by having a doctor or nurse just a call button away from me, despite the fact that the call button didn’t work half the time. Even though I was told that I was medically stable to leave, I knew for sure that I wasn’t mentally stable. I still was terrified that my blood pressure would drop to near death levels or suddenly spike leading me to stroke out or that my heart would just mysteriously stop beating forcing me into cardiac arrest. By the way, I am aware that I am a bit OCD, but these fears that I had didn’t just manifest themselves on their own. There is a syndrome called autonomic dysreflexia (AD) that affects people with spinal cord injuries above the midthoracic level in the spine. My injury was at the cervical level which puts me in that risk group. Lucky me. AD causes huge spikes in blood pressure and may be life-threatening. If it isn’t treated promptly it can cause a stroke or heart attack. Watching for AD signs and symptoms was repeatedly pounded into my head the entire time that I was in the hospital. The crazy and confusing thing with AD is that the symptoms are so general and the causes could be just about anything. What a wonderful syndrome to have for someone who can become instantly symptomatic just by reading WebMD.

The common symptoms of AD are:
-Goose bumps
-Chills
-Heavy sweating around the neck
-Sudden pounding headache

To make the symptoms even more vague, sometimes people will just get a sudden sense or feeling that something is terribly wrong. Hmm, based on that, I should chronically be in AD since I had that feeling the majority of my tour of duty at Jackson.

AD is caused by an abnormal stimuli in the paralyzed region of the body. Full bladder, impacted bowel, or a skin irritation are the most common stimulants or even something simple as an ingrown toenail or a shoe that is too tight. Finding the cause of AD and fixing the problem quickly is very important. I have had bouts of AD when I left the hospital and let me tell you, it’s not fun, especially when there is not a doctor around. You feel like you are going to die. I have learned to be extremely cognizant of the signs and symptoms of AD. I am beginning to think that spinal cord injuries can cause everything but cancer. If you google risk factors with SCI, just about everything that you never want to get is listed as a risk. I used to be worried about Alzheimer’s, but who cares at this point.

Despite all of the medical crap that weighed heavily on my mind, I counted the days to my release from the four walls that surrounded me for three months. I thought that life out of this “One Flew Over the Cuckoo’s Nest” looking hospital wing would definitely be the prescription that I needed. I was going to stay in Miami for my outpatient rehab and live in a condo on the beach. The entire building and property is accessible for wheelchairs, so it would allow me some sort of independence. Getting some natural vitamin D everyday and listening to the ocean was going to instantly heal me, right? Well, it wasn’t as easy as I envisioned. Mentally, it was a huge adjustment. My safety net was gone and I was around people that were able bodied and “normal”. My disabilities really stuck out and the realization of all the things that I really couldn’t do anymore we’re brought painfully to the surface. I went through a series of mini breakdowns along with long bouts of staying in bed. The sun was shining but I certainly couldn’t see it. The words “I still can’t believe this happened to me” echoed in my mind several times a day. The first of the series of breakdowns happened when I was leaving the hospital. We had to order a van that had a wheelchair lift to transport me from the hospital to the condo. Being rolled onto a hydraulic lift, chained to a metal platform and slowly loaded into van that looked more like an ambulance made me feel ashamed and somewhat less of a person. I felt like an animal in a cage being loaded into the cargo compartment of a plane. I broke down into tears. Arriving at the condo was even worse. The ambulance looking van pulling up to the valet area was far from discreet. Yet again, I would have to endure getting on the hydraulic lift, being on display like a circus freak and then lowered to the ground…this time in front of what seemed to me a thousand people. It was probably only a few people but through my eyes everything was magnified. People were looking to see who or what was going to come out of the ambulance van. Who did they think it would be, Kim and Kanye because they most certainly are done with Bentleys and Rolls Royce and on to the more hip and stylish ambulance van. As I was being lowered to the ground a women was walking by the van. She was rocking 6″ Fendi heels and skinny jeans that looked as if they were painted on. She also looked like she hadn’t eaten in 2 years and was on the Diet Coke and Marlboro Lights diet. The only flaw that I could find with her was that the Fendi shoes were from last season. Here I am with half of my hair shaved off looking as messy as ever, wearing a baggy Adidas track suit and feeling as big as a barn while being paraded in a wheelchair in front of all of the “beautiful people” of South Beach. Super freaky Run DMC wheelchair girl was not the kind of look that I ever wanted to go for. This experience was not a good addition to my already low self esteem.

Ann Marie and of course Ross were around to help me with my transition that weekend. Ross pretty much spent the entire weekend running around town to get me the things that I needed to make me more comfortable and Ann Marie spent her time getting all of my clothes and supplies organized and put away. She picked up my many prescriptions and got them all organized so my 24/7 caretakers knew what meds I should be taking and when. I of course, was no help which made me feel even worse that I couldn’t do anything. Words cannot describe what it feels like to lose your independence. There are days that I feel like I’m in prison…