Eyes Wide Open

A Perspective From Within


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Pay(Pal) it forward

It’s been months since I’ve posted anything. Between my mother passing away and trying to deal with everything else in my life, my post would have most definitely been a Debbie downer. I finally have something positive to write about, and it’s really not about me.

My cousin Joani is celebrating a big birthday soon. She’ll be turning 60—so hard to believe. Joani recently phoned me to propose an amazing idea—rather than having a big birthday bash for herself, she’s decided to do a “charity boot camp”. Joani has been known to always be the cousin who “marches to the beat of a different drummer”, so breaking a major sweat and painfully elevating her heart rate far past the “zone” seems like a perfect birthday gift to herself. I still prefer the kind of gifts that you can open, but that’s me. Joani wants to donate the money raised at the bootcamp to a charity or non-profit that helps people with spinal cord injury, and also wants to make the donations in my name. I’m so honored that she would include me in her special and momentous day, and make it about helping others (and also getting into her skinny jeans). Joani expressed to me that she thinks often about what I have to endure on a daily basis just to do the simplest of things, and is thankful that her body is still physically healthy and able. I can’t even begin to tell you how much I wish I could get on a treadmill and run or do a crazy circuit in the gym. Those things that I complained about and dreaded pre-injury are just the things that I wish I could do again today, post-injury.

When Joani told me that she wanted to raise money for SCI, I knew right away where this money should go…to a non-profit called The Woody Foundation. I met the foundation’s namesake, Woody Beckham when I first started outpatient therapy at Miami Physical Therapy. Woody started out being a bit of an enigma to me. I’ll elaborate. When I first started inpatient PT at Jackson, I always wondered why, in the middle of an early 80’s looking physical and occupational therapy clinic, there was a sleek and modern Miele kitchen. It basically can be compared to seeing a Bentley parked under a carport of a double-wide trailer. It was really something that peaked my curiosity. I finally asked one of the therapists about my nagging Miele mystery.

Enter in: The Woody Foundation

She told me that the kitchen was donated by a guy named Woody who had a spinal cord injury in 2011 (about a year prior to my injury) who also attended Jackson inpatient rehab. She went on to say that Woody started a foundation that raises money for the recovery of people with SCI. The foundation also helps to raise awareness and lend financial support to local organizations helping to rehabilitate and cure paralysis. Concentrating on reaching out to the newly injured is a top priority of Woody and his foundation. I can tell you firsthand, Jackson Hospital did a horrible job in preparing me for what I had to deal with in the coming year. The social worker did nothing to help with my transition. I was basically given a Christopher Reeve’s Foundation book, and was told that it had a lot of valuable information in it for me. I wish that I had a foundation like Woody’s to better prepare me, because honestly, it’s pretty fucking scary. The Woody Foundation is the type of organization that makes a direct impact on people’s lives. There’s a lot of charitable organizations out there that seem to have a constant stream of big dollars going in, but you never really see where that money ends up. Woody’s foundation is what I consider “tangible help”. You can actually touch, feel and see the dollars at work. A perfect example of tangible help is “The Woody Pack”. It’s brilliant. He personally curated a collection of assistive devices for people with limited hand function, after dealing with his own personal challenges with adjusting to this new life. Quadriplegics most of the time have very limited or non-existent hand and wrist function, and Woody discovered various devices to help him regain his independence thus eliminating the need for help from others with simple life situations such as eating, drinking, using a cell phone, etc. Trust me, I hate being dependent on people. It makes me feel like a burden, and that’s the last thing that I want. Imagine how many times a day you use your hands to pick-up a phone, cup, pen, fork or ID. Individuals using devices in The Woody Pack can overcome these and other daily obstacles. Believe me…hands and fingers are not overrated (some days, I feel like I have dog paws). Woody’s goal with these packs is to share his experience of regaining independence with others so they too can have the joy of going about their day…on their own. The cost to put together each pack is around $200 (anything for the disabled is expensive) and Woody provides these packs free of charge to people who can benefit from them. You can read all about Woody’s Foundation on his website at http://www.woodyfoundation.org.

Back to my story.

The thought really never crossed my mind that I would actually meet Woody, but when I started my outpatient therapy at Miami PT, I finally met him. I expected someone much older, not someone in his early 20’s. I know when I was in my early 20’s, being altruistic and giving back was not at the top of my list back then. I also thought how when I was a year into my injury, helping others was not even remotely a priority for me. I was consumed with dealing and adjusting to this life changing and catastrophic injury. I had a hard enough time being me. When I see Woody, I’m amazed at what he does and what he has accomplished so early on in his injury and life…starting a foundation, going to college, boating, you name it. I had a hard time going ANYWHERE and doing anything, and I still do, to a certain extent. Call me selfish, but I’m still a bit consumed by myself trying to figure out all this paralyzed BS.

How you can help.

The bootcamp is on August 2nd at a place called The Fitness Factory in Rotterdam, NY. A Facebook event was created that explains everything:

https://www.facebook.com/events/1019035101459474/

The trainer and the facility will be donating their time, and rather than people paying a fee for the bootcamp, they are asking for anyone participating to make a donation to The Woody Foundation instead. Joani’s goal is to raise $6000. Now, I’m pretty sure that most of you will not be able to attend the bootcamp, but you can still help us meet this aggressive goal. Donations can be made online directly to The Woody Foundation’s website. Here’s the link:

http://www.woodyfoundation.org/event/joanis-birthday-bootcamp-fundraiser/

When you click this link, scroll down and click the “donate” button.  A generic PayPal page will come that will say “The Woody Foundation” at the top.  You are in the right place.  Log in to your PayPal account and follow the directions from there. If you don’t have a PayPal account, there is a link at the bottom of the PayPal page that will instruct you what to. There is not a section that you can make a note about the donation being in my name, but The Foundation rarely gets online donations, so they will know what the donations are for.  Lucy Foerster, the Executive Director of the Foundation is keeping track of the donations and posting goal updates on https://www.facebook.com/events/1019035101459474/

Please join me in making a donation to The Woody Foundation and this great cause. The foundation is a 501(c)(3) not for profit organization, therefore, your donations are tax-deductible. You will receive a tax-deduction receipt upon completing your donation online via Paypal (using the link above). You can also send a check to the below address payable to the Woody Foundation, Inc.

Woody Foundation, Inc.
12500 Virtudes Street
Coral Gables, Florida 33156

Together, I know we can make a difference for individuals and families dealing with SCI!

Joani and I March 2014

Joani and I March 2014


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Keeping Up With Mary Vaccaro

I’ve decided to post some random pictures and a few videos that were taken over the last few months. For those of you that follow me on Instagram, this may be a bit redundant. It’s been a while since I’ve posted anything. I have several entries written but always seem to change my mind prior to posting them because my mood changes. Go figure. I’ll post something new soon.

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Well overdue new hair from Oribe Salon. It’s been a year since color and scissors have touched my head.

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Happy hour at the Setai lounge. My friend Lisa Lambert was in town.

Beach wheelchair. Monster tires.

Beach wheelchair. Monster tires.

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My visit with Brian and Maria.

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Paparazzi at the beach stalking some Argentinian super model who is staying here. Lisa and I thought they were here for us…we’re famous in our own way.

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My visit with Harald and Marlene.

At the Miami Project getting hooked up to electrodes. I was there for a study. I was basically a lab rat.

At the Miami Project getting hooked up to electrodes. I was a lab rat for a study on hand movement in people with SCI.

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2 on 1 at Oribe

At the beach with Harald, my crazy Austrian friend.

At the beach with Harald, my crazy Austrian friend.

Barb's visit. Really nice to see her.

Barb’s visit. Really nice to see her. I put a little artsy filter on this pic.

Stage 1 of the hair.

Stage 1 of the hair.

Wonderful surprise from old friend Jenni Pekar. The card was filled with words of inspiration from her coworkers at the Bliss spa.

Wonderful surprise from old friend Jenni Pekar. The card was filled with words of inspiration from her coworkers at the Bliss spa.

The vans that take me to therapy are made in Akron. WTF...very  bizarre.

The vans that take me to therapy are made in Akron. There are hundreds of them around Miami. WTF…very bizarre.

My boys from work came to see me. So great to catch up. Lots of laughs as usual.

My boys from work (Sandridge) came to see me. So great to catch up. Lots of laughs as usual.

Geno and I. My brother from a different mother.

Me and Geno… my brother from a different mother.

Me, Ross and Andrea at Smith and Wollensky.

Me, Ross and Andrea at Smith and Wollensky.

Below are a few videos for your viewing pleasure. The first three show me using the ReWalk. It’s an exoskeleton that brings me to a standing position and initializes steps. It’s really meant for paraplegics that have trunk control and way more function than me. I actually worked many hours on exercises to increase my stamina and strength in the few trunk muscles that I’ve regained. This may look easy to you, but in fact it kicks my ass. Making 2 laps through the gym wipes me out. There’s a home version of this unit that’s sold in Europe. Paraplegics can put on the “suit” and go to work, take walks etc. Currently, in the US, the FDA has only approved this for clinical use. Apparently the home version is awaiting approval here.

http://m.youtube.com/watch?feature=c4-feed-u&v=ZwMvRBsU2OA

The last video is me at Hyde bar at the SLS hotel in South Beach. Ross surprised me one Saturday and rented a cabana poolside for the day. Our friends Bill and Lyndsey came from Fort Lauderdale to hang with us. SLS has a pool party every Saturday and Sunday. The weather was ideal and the average age was 22. It was a lot of fun people watching. Ross definitely spoils me!


18 Comments

I Stand Corrected

It’s been quite some time since I posted anything. I have had several posts started, but in the midst of each, I always seem to get stricken with a severe case of writer’s block. I’ve been getting several messages wanting to know if there has been any progress with me. I am continually making progress because of all the work that I put into my therapy. I expect it. It’s the breakthroughs that I’m waiting for. If progress isn’t being made, It’s really simple, I’m not working hard enough. I’m hoping that with every new thing that I do in therapy, I’ll get a small step closer to muscle movement, something that I want and need desperately.

I will do just about anything in therapy. I constantly make the joke to Carla my therapist, that I feel like a trained dolphin; she tells me what to do and I do it. Hold the ring up and I’ll jump through it. I really will attempt just about anything in therapy. To me, nothing is beyond the realm of possible, which brings me to my latest endeavor…standing outside of the standing frame. I have posted pictures previously of balancing myself hands-free while in the standing frame. This was quite the accomplishment, but now it’s time to raise the bar so to speak, and make use of the parallel bars. Carla is always trying to think of new challenges and approached me about attempting this a little over a month ago, and I was all for it. Basically, I start in a sitting position with a gait belt on and push myself up to a standing position while Carla sits in front of me and locks my knees out. The first few times that I did this, it seemed incredibly difficult and required an immense amount of energy from me. I really only could last for a short amount of time. I also required a significant amount of help to push myself up to standing. It progressively became easier, and today was the best day ever. The next step would be to have braces made for my legs. With the braces, I would be able to take actual steps. We are investigating this. Custom braces are shockingly expensive, so we are looking into the feasibility of it all.

I’ve posted a couple of photos, and a video below from the parallel bars. By the way, the bulky white thing around my waist is the gait belt…not the most fashionable accessory but very necessary for safety. I was actually able to stand without significant assistance from Carla and Omar today. All I need are my muscles to kick in, and I’ll be golden.

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The only place where success comes before work is in the dictionary. ~Vidal Sassoon

I asked my Miami PT therapist, Carla Ruhl, to write something about the various activities that I’m doing at therapy and the strides that I’ve made. It’s interesting to see my progress through someone else’s eyes, especially someone who knows the technical aspects of what my level of injury will yield. I’m my worst critic. I’ve always been, and I get disappointed about my therapy successes when I should be celebrating them. I know that I need to be more positive about how far I have come considering the catastrophic injury that I had, but that’s easier said than done. June 11th will be my one year anniversary for my injury. If you had asked me when I was in the hospital what I would be like June 11th 2013, I would’ve told you I would be walking and back to work. I know that my expectations were probably not reasonable, but I might not have gotten to where I’m at today if I didn’t shoot really high. After reading Carla’s note that she sent me for the blog, I’ve realized that I truly have done some incredible things, and I need to give myself more credit…

These are Carla’s words:

When Mary asked me to write something about her so that she could put it her blog, I wasn’t surprised. From the first sessions that we worked together, I knew she’d be different.

She’s the type of person….type of patient that inspires you…pushes you. She’s sassy and remarkable in many ways. I could see from our evaluation that she already had a particular presentation allowing her to feel below her level of spinal cord injury (very lucky). Considering the extent of her injury I knew what expectations I had for her. But she’s accomplished those and more. She also has this attitude…knowing what she wants….not taking no for an answer.

In 25 years as a physical therapist I have had the experience to work with and know several “SUPER quads”. Can there be something such as a SUPER SUPER QUAD ?. It’s not really tangible…she’s just doing things that are amazing….activities that have me asking “where is that coming from because I wouldn’t expect that from my muscle testing scores ? ”. With each new challenge I give her, she says “lets do it”….she wants to perfect her movements, her new exercises. As you’ve seen in the pictures and videos she’s moving throughout what therapists call the neurodevelopmental sequence (in simple terms, they are the movements that helped us as children develop strength, stability and mobilty….movements that trained us to move from laying on our backs to our tummies to crawling and in time, walking). I hope that this will be the case but…I can only say that we need more (it’s so redundant isn’t it ?…always wanting more). More function, I mean, in the legs to accomplish this full neurodevelopmental sequence but for now…..Mary’s abilities are AMAZING ! She has developed postural strength, balance and function that considering her level of spinal cord injury surpasses our expectations.

We will continue to work…continue to work on sit to stand transitions (who knew ?)…standing balance (WOW!). I look forward to our intensive 4 hour sessions…her desire to work hard… her willingness to push the envelope inspires me…inspires those around her. As I have read in her blogs and have had the honor of meeting her friends and family, I have come to understand that she has always been this intensely charged woman. Thank you Mary.


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“Fitness, if it came in a bottle, everybody would have a great body.” – Cher

It’s been a while since I have posted a blog update. I really need to be more disciplined with my writing because I actually have a lot to say.

I frequently get asked about what I do at therapy, so I thought a play by play should be in order.

First of all, I have to say, I love therapy. Prior to this accident, I was in the gym religiously 3-4 times per week, but I can honestly admit, I never truly loved working out. I’m quite sure there are more people than not who share this same sentiment. I think most people are lying when they say they do. These are the people who have all of the latest workout gear, but you’ll find them standing on the treadmill talking about how much they go to the gym. They move their mouths more than they move their bodies. I never understood how people became addicted to working out. After 15+ years in the gym, I’m still waiting on that runners high everyone talks about. Truthfully, my only driving force that kept my weekly schedule was the fear of getting fat, because I love to eat and I love couture. Lanvin has not launched a plus size line yet, and I don’t like to throw up, so going to the gym was the next best option. I know my trainers at the Yellow Creek gym are reading this, so I guess the cat’s out of the bag. Lynn and Cody, both of you made my workouts fun and tolerable!

This is why I find it oddly surprising that I love therapy. What I do at therapy is 20 times harder than the most intense workout that I’ve done in the past, but I still like it. Maybe it’s the challenge that drives me, but truthfully, at the end of the day, my priorities are a little different now. I still have a fear of getting fat, and I’m still obsessed with runway fashion, but the fear of never walking again and being faced with being dependent for the rest of my life scares the shit out of me (and couture clothing never looks good while seated either).

I have been attending Miami Physical Therapy (in Coconut Grove) since September of last year. I feel comfortable and at home there, which I think is a particularly valuable factor in any recovery. The entire staff is not only positive, supportive and knows their shit, the Cuban coffee that they make there is delicious. I’m addicted to it and usually start bothering Omar, the Cuban coffee making PT attendant, to make some as soon as I get there.i think he gets a little annoyed with me because I really do nag him until he makes it. All of the attendants are PT students. I really enjoy having them around to shoot the shirt with.

If I had the stamina I would go to therapy Monday through Friday, but my body definitely needs some recovery time. As it is, I’m there 3x per week, and have increased my sessions from 3 hours to 4 hours per day, which is extremely aggressive. I’ll get home around 6pm and will literally pass out. What I was able to do prior to September 2012 and what I can do now is undeniably night and day. Back then, I thought I was a bad ass at Jackson rehab when I was on NBC Miami news for the most pull-ups completed during the Jackson Memorial Olympics. That seems so long ago.

Today, Carla, my therapist, has presented me with new challenges that I hope gets me just a little bit closer to regaining what I have lost. I have wrote in the past about the stim bike and the standing frame, which are still an integral part of my therapy repertoire. In addition to those, I am doing something new and exciting. See the video below. I started doing this a few weeks ago, and the video is already obsolete. I can actually get up on all 4s with little or no assistance. This is quite an accomplishment since most of my core is still paralyzed.

The main reason I was able to progress to an advanced activity like this is because I regained a small amount of my core back. This includes obliques, flickers of the upper part of my rectus abdominis and a muscle in my back called the erector spinae. What is important to note about these muscles is that they correspond to the spinal nerves that are below my level of injury. My injury was at the cervical region (C6/C7) and these new flickers of muscle movement correspond to the thoracic region of my spine, meaning that there is some communication occurring down my spinal cord. Below is a good chart that shows the spinal nerves and corresponding muscles.

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This is exciting but still not enough for me. I want tangible movement that I can see, which is why I go at so hard at therapy. I have no choice…

Me quadruped holding myself up

Me quadruped holding myself up

Sit to stand-holding myself up

Sit to stand-holding myself up

Sit to stand

Sit to stand

Sit to stand-holding myself up. Perfect posture.

Sit to stand-holding myself up. Perfect posture.


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NO ONE CAN STOP YOU WHEN YOU DECIDE THAT YOU’LL NEVER QUIT—Dan Waldschmidt

Having an injury like this has taught me that perseverance is key to getting to that unimaginable goal, that’s why being relentless at therapy is so important, but it’s not always easy. Every day I struggle with staying positive and not going to that dark place in my mind. I’ve been there and it’s miserable. Like I said before, boredom is like Kryptonite, and if my mind is not occupied, I start to think of my life before this nightmare, and whether things will ever be the same. Thankfully, therapy keeps me very occupied. I’m there for several hours and by the time I get home, I’m too tired to think. However, therapy isn’t every day and I stupidly allowed myself to fall into a brief malaise. For about a week, I felt a little hopeless, isolated and lonely…I call these feelings “the funk”. I didn’t want to answer the phone, return voice mails, and write emails and texts. Like I said in a previous post, it’s not you, it’s me. Don’t take it personally. I need to get rid of the negative thoughts and only worry about today…easier said than done. I don’t expect anyone to ever truly understand what this disability is like and the struggles presented to me every day, but please just be patient. I’m sure that one of these days I’ll call and text so much that it will be borderline annoying and you’ll probably end up blocking me anyway.

WHEN LIFE GIVES YOU LEMONS, SELL THEM ON EBAY
I try to keep my mind busy on the non-therapy days. In order to stay fresh, and relevant in my career I do an enormous amount of food and food industry research on my non-therapy days. I call myself a “culinary curator”, hunting and gathering curious information about the food industry and food pop culture. I could probably tell you more about food than you would ever care to know. I educate myself on the mainstream and the obscure. For instance, did you know that Tang makes a better Mimosa than orange juice or that Columbia students are eating (or stealing) $5,000 worth of Nutella each week? If anyone cares to stay up to date on the latest culinary curiosities, I Tweet about all things food several times a day (however there might be an occasional sprinkling of tweets about my distaste for the Kardashians). You can find me on Twitter at @maryangelav. I have also been spending a lot of time learning the business and psychology of social media and how it has really changed the fundamentals of marketing today. It is so fascinating to me how major companies are using Twitter as an HR tool to find the best and the brightest, and that companies and brands can establish relationships with consumers that otherwise they may have never reached. For God’s sake, Mario Batali tweeted me and we’re not BFF’s.

SOME RANDOM PHOTOS I’M POSTING FOR NO REASON

Contiuum South Beach Miami

A view from 34

South Beach Sunrise Miami Beach

South Beach Sunrise

Milos South Beach

Ann Marie and I at Milos South Beach

Blast from the past

Blast from the past-my head looks HUGE!

Art Museum opening-feels like another life

Art Museum opening-feels like another life


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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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