Eyes Wide Open

A Perspective From Within

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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Don’t $@&* With Me Fella’s…..It’s Not My First Time at the Rodeo

This is a letter that I emailed to the CEO of Jackson Memorial Hospital on the last night of my stay there. I actually got a response from him.

Dear Mr. Migoya,

I have been a  patient in your hospital for the past 78 days. I had my trauma in New Orleans and flew here right after my emergency spine surgery there. I fractured C6 and C7 and am a partial quadriplegic right now. I am here at JHS by choice not by necessity. I had the means to go anywhere in the country but I chose this  hospital specifically to be under the care of Dr. Green.
I received a piece of paper that was a JHS adult patient satisfaction discharge interview survey for the rehab center. I am going to fill that out but I also wanted to take the time to give you feedback of my entire JHS experience. I believe feedback,   be it positive or negative only makes people and companies better.
I have only accolades for Dr. Green and his extremely professional and talented team, including Shelley Garcia, Dr. Mario Olavarria  and Green’s  residents. They are above excellent.
My stay here started in your ICU.  I was there for about 10 days, and I have to tell you the staff there is excellent. The nurses and the patient care techs (PCT) are commendable including nurses Cathy and Chris and PCT’s Ocean and Janet. There were many more that need to be commended but unfortunately I cannot recall their names… they were all wonderful. I felt as though each and every one of them were my advocates and they had a naturally holistic view of mind, body and spirit for a patient’s recovery. It was not just purely medicine, but the empathy that they demonstrated, whether it be an MD, RN or PCT. I went through a very traumatic experience resulting in a very serious injury, and dealing with the loss of most of my motor function was not easy. They all really got it, and were there by my side when I needed them medically and emotionally and at the highest professional level. Unfortunately, I cannot say that for the other units of the hospital that I spent time at and the other medical professionals that I came in contact with. The disparity of care and professionalism stuck out like a sore thumb. My fiancé has been a physician for many years. He is an attending at our hospital and also runs a very busy practice with three locations. I am well aware that just because it’s medicine doesn’t mean that everyone that practices it and works in it is excellent. There are high performers and not so high performers in every job, including healthcare.  I am well aware that people in medicine are not superheroes and that I should not look at my stay here through rose colored glasses. But I do expect to have a better level of service quality that I’ve had in some areas that I stayed. For the last 11 weeks I have stared at a board on my wall that I am assuming states the JHS Mission statement: “Our goal is to provide you with excellent care”.  Based on that statement I would like to give you my feedback that is at times much less than excellent care.
Enter West Wing 7, my interim stay out of ICU and into my much anticipated rehabilitation. I was well aware of the patient to nurse ratio as compared to ICU, and that reaction time would not be as quick when I needed someone, but I did not anticipate being ignored completely. I am here from out of town and thankfully, I had a large friend and family network that took turns flying to Miami to stay with me and help me out at the hospital. I would assume that many people do not have that luxury. I probably would not had have made it through this hospital and this traumatic experience without the support of the people around me.
When I was brought into West Wing seven, my first impression was how nice the room was (I had a private room) and how professional and detail oriented the first nurse that I came in contact with was. I believe her name was Caroline. Unfortunately, I did not see her after that, but she was great, kind, organized and efficient. The PCT’s that I had were excellent as well. I had a good feeling about the way things were going to go, but it went downhill from there. There were many excellent nurses there, but a few not so great ones upset my apple cart. There was more than one occasion that I needed a nurse but was not able to get one. I was not pressing the call button like I was ordering room service at a hotel, I truly needed someone’s help. At one point, I was left in the pink chair for too long.  This is the chair used to sit someone upright for the first time when they have been laying down for a very long time. I rang the bell several times because I absolutely needed to get out of the chair and back into bed. My spine surgery was still very new and I was experiencing substantial pain and some dizziness for being up too long. The secretary at the nurses desk that is in charge of answering the patient calls kept telling me someone would be there. I think at one point she just stopped answering my calls. Finally, probably 45 minutes later I was transferred into bed and given pain meds and finally relieved. Another time, I was laying in bed in severe pain, and rang the bell to ask for a nurse and pain meds. After about an hour of no nurse in sight, my friend just happened to pay a visit to me. At that point I was crying from the pain and he ran to the nurses desk to get help for me. He actually had to go a couple times and they finally came. This is absolutely unacceptable.
On another occasion, I needed to use the hospital notary for some documents that needed to be sent out ASAP. My friend Kim was  with me at the time while I was in West Wing seven, and went to the same desk and talked to the same person that answers the phone for the patient calls. Kim received absolutely no help from this person and she was actually quite rude. She tried to tell Kim that there is no notary available. It was as if she really didn’t want to do anything at all for us. Someone finally helped us and we were able to get the notary that
was on staff that evening. There were numerous occasions, I needed a nurse, and could not get one. The lady that delivers the food trays every day actually helped us more than some of the nurses there and told us at that at many times  all they’re doing is standing around chatting and texting on their phones. Kim slept in the room with me in West Wing seven every night because she was afraid to leave me alone for fear I was not going to get the help and care that I needed. There’re some really great nurses in that unit but some really lazy ones as well and who do not know the concept of good customer service. We made an official complaint so it should be documented with someone somewhere in this hospital.
The food here is atrocious. I realize that hospitals are particularly known for bad food, but this food is inedible. The menu every day that is sent to my room states “chefs specials”. I would like to meet the chef to give them my review, if there even is a chef. I could not eat the food here. It did not help with my recovery. My friends, family and fiancé spent thousands of dollars to bring groceries into me so I could have good food that would help me feel stronger mentally and physically. I grew up in the restaurant business and currently work as a marketing manager at food manufacturing company. I work closely with our R&D department as well. We work with many healthcare facilities and wellness campuses, and I know firsthand it does not cost a lot of money to make healthy, good tasting food. This is all part of the mind, body, spirit recovery that I was speaking about in the beginning. You need to have a tray delivered to your office every once in a while to really taste what’s going on. You wouldn’t be happy.
I only spent about five days in West Wing seven when I was finally transferred to the rehab building and into my private room. I was actually on the pediatric side of the rehab, but there were really no kids here mostly adults. I was shocked as to how antiquated this side of the building was, but I wasn’t here for luxury accommodations… only to work hard in rehab. The hospital, though, might want to consider putting some money into this end of the hospital. This rehab building really needs to be ADA compliant, since most people are in wheelchairs on this side… Just a thought. I quickly discovered that the nurses and PCTs were excellent in the rehab side and it more than made up for the dilapidated conditions over here. Nancy Castillo is blessed with a great staff. Your staff is only as good as the person that manages them, and Nancy is a prime example. They had the same high standards of care and emotional support as the staff in ICU and understood the intense emotional pain that many of us were going through. Hope was always their prescription. I got to know all of them and as I leave here, consider many of them to be my friends. Nancy, the rehab nurses and the regular rehab techs went above and beyond for me. I would like to acknowledge each and every one of them because they are wonderful:
Nancy Castillo-she is so wonderful! She genuinely cares for the people in her unit. Nancy visited me every day to make sure that things were okay for me. She even brought me Starbucks! Nancy also assured me that I would not go home unprepared…and kept her promise. She is a true professional. More healthcare organizations need people like Nancy.
Christy-such a lovely and caring person who would never let me give up. She is also superb at what she does and works more hours than most. Such a hard worker and never tired. She has a very kind soul. I asked if she would adopt a 43-year-old woman like me. I wanted to take her home with me!
Eddy-he’s always there to help and with a smile on his face. He is often shorthanded, does the work of 2 people and every day turns lemons into lemonade. Marie-quick on her toes and always willing to go the extra mile. Jackie- not a veteran but if you didn’t know it you would think she had been doing this for many years. She’s extremely intelligent, caring, professional and maintains great customer service (something lacking throughout most healthcare today). Melanie-she’s still green but is very caring and sweet. She has the foundation to make a wonderful nurse. Cynthia – I have known her the entire time I was in rehab but did not have the pleasure of having her on our side too many times. She is a new nurse who is excellent.  Miss Francis-my angel in the night. She is sweet, kind and with a good sense of humor. She is there almost every night from 11 PM to 7 AM. When she’s not there, I miss her greatly. She is a very lovely person, and is a seasoned veteran. Barbara-such a wonderful and easy-going PCT. nothing gets under her skin. She is always calm and very professional, but also very personable. She is excellent at what she does. I believe she’s going to nursing school also. She will make an even better nurse. Roscio-a sweet PCT who always has a smile on her face. She knows how to treat and safely handle patients like us and will do anything to make the patient happy. Sylvie-another angel in the night. She is excellent in her job. When she was not there I noticed. She made my coffee every morning before her shift ended and got me my hot towel… Little luxuries for me that helped to start off my day. She went above and beyond. Victoria – it is difficult to put into words how wonderful this
PCT is. She is dedicated beyond belief. I looked forward to the times that Victoria worked. She pampered me. Victoria did many things for me above and beyond her job description. One day I came back from therapy and all of the cards I’ve received over my stay here were hanging beautifully on my wall. What a sweet thing to do for me. She counseled me many times when I was down and told me that I should never give up. She also told me many success stories of people with the same injury as me (or even worse) that are walking today. Victoria is not only great at what she does but also gives hope to many that need it. Hope is a key piece in recovery. I am glad to have met her and this hospital is very lucky to have her.
The first 4-5 weeks in the rehab unit went very well, until I noticed a lot of shuffling of staff in and out. This is when things did not go so well for me. The rehab unit is a very different unit than the rest of the hospital. It’s the last stop for most
people to work on getting back to normal life and many times with a serious disability. Most of us had to relearn everything and were completely dependent upon the staff here (me in particular as a partial quad). The nurses and the techs here not only have to make sure that we are well taken care of medically, we actually have to get fully dressed, transferred into a wheelchair and be on time to our rehab appointments twice a day. We were not in hospital gowns all day laying in bed. It was especially difficult and many times unsafe when PCT’s from other areas of the hospital were rotated into the rehab unit. These PCT’s do not have the same level of training as the rehab PCT’s and it is quite apparent. I have had many scary and unsafe experiences with these less qualified PCT’s that rotated into rehab.  The nurses and especially the PCT’s are dealing with many people that have spinal cord injuries and are trained to deal with their special needs. Many of these PCT’s that rotated into rehab did not know catheterization (something that I had to get done every four hours), they did not know how to safely transfer a patient from the bed to a wheelchair.  I was almost dropped by one PCT that rotated in, thankfully a med student was in my room to help scoop me up. Another PCT did not know that I had to put a binder on when i was dressed and put into a wheelchair. These binders are extremely important for someone like me that has a spinal cord injury. If it’s not on I would likely pass out. This happened to me on one Sunday and I almost passed out. Luckily my fiancé was there and I was brought into bed immediately.  All of these things have happened because of untrained professionals. I think McDonald’s employees are trained far more in safety than some of these PCT’s. Many times, when I was not with the regular rehab PCT’s, I felt extremely unsafe. This is not a good feeling to have in a hospital.
My experience in the Rehabilitation  Department was beyond excellent. The Physical therapists and the occupational therapists are extremely qualified and caring professionals who had a major impact on where I am physically and emotionally today as I leave the hospital. My OT therapist Suzette and my PT therapist Melanie were incredible. I came in here scared, not able to do anything and not confident at all with myself. Today I’m leaving stronger and with the tools that I need to try to get back to a normal life. Many times, I felt safer in the rehab gym than I did in my room, … Emotionally and physically. Every single one of them has a special gift.  I witnessed and experienced it every day. Because of them, I’m a better person today than when I enter this hospital. All of them went above and beyond what their job descriptions are. Gayle, who was not even my therapist, stopped in many times in the morning to see how I was doing. She even took the time to give me a manicure a couple times while I was here. This is a luxury that I did not expect from an occupational therapist. They were all like that. What a great group of people. Suzette and Melanie also offered me a shoulder to cry on many times when I was frustrated, upset and depressed. Having people around like this is so valuable in the recovery process. Suzette was aware that I came from a marketing background. She had asked me at the beginning of rehab to come up with a slogan to put on T-shirts so they could raise money for JHS rehab department. Sarcastically, I told her the slogan should be “JHS  rehab, the place that you never wanted to be and the people that you never wanted to meet”. I can honestly say today that I’m glad I’ve met all of the people in JHS rehab and regard them as my friends.
It’s too late for me to get these problems fixed that I’ve experienced, but if your goal is truly to provide your patients with excellent care, you might need to take some of these suggestions to heart. Also, don’t forget to recognize the people who truly provide their patients with excellent care and who live that mission statement that I stared at for 11 weeks while here at JHS.
Regards,
Mary Vaccaro

https://maryvaccaro.wordpress.com/category/the-road/

 


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The Eagle Has Landed

[1] Ambulance transfer from FLL airport to Jackson memorial. They were really funny and made sure I was settled in before they left. I was wearing a little thin by this point. We got there around 3:30 am.   [2] My first minutes at Jackson Intensive care unit.  Louis was just what you needed at this point.  A hot, funny Latin man to make you feel at home! Lourdes was nice too, but I’m not into chicks, so….


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Ready For Lift-Off

[1] The pilots arranged this shot. They really wanted the “jet icu” in the picture. It was cute!   [2] Me in the Lear Jet ready for transfer.   [3] Capt Steve and Capt Scott (2 air medics). Wish I remembered their names. Very cool and attentive.

Ground control to major Tom
Ground control to major Tom
Take your protein pills and put your helmet on
(Ten) Ground control (Nine) to major Tom (Eight)
(Seven, six) Commencing countdown (Five), engines on (Four)
(Three, two) Check ignition (One) and may gods (Blastoff) love be with you

This is ground control to major Tom, you’ve really made the grade
And the papers want to know whose shirts you wear
Now it’s time to leave the capsule if you dare

This is major Tom to ground control, I’m stepping through the door
And I’m floating in a most peculiar way
And the stars look very different today
Here am I sitting in a tin can far above the world
Planet Earth is blue and there’s nothing I can do

Though I’m past one hundred thousand miles, I’m feeling very still
And I think my spaceship knows which way to go
Tell my wife I love her very much, she knows
Ground control to major Tom, your circuits dead, there’s something wrong
Can you hear me, major Tom?
Can you hear me, major Tom?
Can you hear me, major Tom?
Can you…
Here am I sitting in my tin can far above the Moon
Planet Earth is blue and there’s nothing I can do