Tuesday, July 2, 2013

It's Definitely Not Easy, but Definitely WORTH IT!!!

I felt a sense of peace come over me when we pulled up the scenic driveway to the Helen Hayes therapy center. It was very similar to the feeling I had on the first day I arrived for admission back in October of 2010. As I laid helplessly strapped to a gurney in the ambulance that day, I vividly remember thinking to myself, "this will be the place to help me get my life back!" 3 years later, I was in MUCH better condition and headed for the outpatient department. There is something almost magical about Helen Hayes that inspires a wonderful sense of HOPE"Welcome"signs with words of encouragement, and colorful flowers in full bloom littered the walkway as my Uncle Carlos and I made our way over to the building. He always parks in the furthest spot just to give me the "extra workout". He claims it's his way of "keeping me from becoming too lazy," haha. The grass looked as if a luscious green carpet had been rolled out onto the ground with a beautiful view of the Hudson as its backdrop. Over the years, it has become quite clear to me that exercise is a key element in maintaining my fast paced lifestyle and so I was excited to jump back into therapy on that beautiful sunny afternoon.  It had been nearly 6 months since my last formal physical therapy session at the hospital, and my body was clearly able to tell the difference. Walking long distances had become somewhat of a challenge and my shoulder muscles would practically shut down when trying to carry large objects. Physical issues such as these have a way of messing with my head, and often leave me feeling somewhat inadequate and insecure as a man. It has taken time getting comfortable with the idea of allowing others to "help me" only because I don't like depending on people, it's just not in my nature. Those same feelings however are what drive me to push myself beyond my limits and go "the extra mile". However,  I must admit I have a bad habit of getting comfortable and relaxed once my body is stronger and "normal". So much so in my case that it is often to my detriment. I often forget that my disease requires a constantdedicated, and life long commitment. but the truth is sometimes I just want a break from it all.  Most people stop working out and gain a few pounds, while I on the other hand rapidly lose function of my vital muscle groups. In this situation however, physical & speech therapy were suspended due to insurance issues. Being that my condition is so rare, it does not fit any particular mold as far as insurance companies are concerned and therefore payments are made primarily at their own discretion. During this time off, my mother and I worked hard with an attorney to sign up for the necessary programs that could potentially secure me another year or two of training. In the meantime, my mother worked hard to pay out of pocket twice a week for in home personal training. I don't know where I'd be today if not for that woman! In the end, persistence truly paid off and a huge smile came across my face as the receptionist confirmed that I had been approved for 40 more visits. This was precisely the kind of boost I needed to rebuild a better quality of life for myself. I have big plans for my future and the only way to accomplish them is to focus on taking care of MYSELF before all else. 

I will be turning 30 next week. On its own, this is a HUGE life accomplishment for me being that 24 years ago doctors sat across from my parents with predictions that I would not live past my 7th birthday. With this substantial milestone in my life rapidly approaching I have spent a great deal of time reflecting. I am now more than ever fully aware of the people and things I hold most dear in this world and therefore DO NOT waste any time in giving them my full attention. I am not stingy with my compliments, and I tell people how much they mean to me on a regular basis. I cry a lot, and not because I'm an emotional wreck but because I am so in touch with the fact that nothing in this world lasts forever causing me to cherish every moment. It doesnt hurt that I'm a cancer and overly sensitive by default. I have been putting in a lot of work on my autobiography and have successfully made some substantial headway over the months. I have come to realize that in order to take my life mission to the next level I need to tell people my ENTIRE story from start to present. I want people to understand who I am before I attempt to take on the responsibility of making positive changes in the world around me! I believe I can have more of an impact that way, and further provide motivational and inspirational help to most of the people I come in contact with. This process has been extremely therapeutic for me and has allowed me to deal with many of my own internal life struggles and demons. It has allowed me to process information in a healthier way and release any anger or negative energy that I may be holding on to. I've spent many late hours contemplating the discussion of personal and private information with my audience. I want to be honest with my readers in order to connect with them in a deep way and so I make a conscious effort NOT to hold back in my writing. Not everyone will agree or like what I have to say but that is a reality that I am all too prepared to deal with. People will judge me for my mistakes but I will take full responsibility because at least it will be MY TRUTH! Part of my "enlightenment" comes from the very concept that my life is my own and how I live it is no one's choice but my own. Hopefully this approach will allow me to gain a certain level of trust, so that my story may be able to benefit people on a substantial level. Another passion of mine has always been music and event planning, and so I recently started a record label company with my two cousins Bambu Bonds, and Mo' Bandz.  We are currently an independent company that is on the road to creating great music and entertainment on a grand scale. Most of my energy comes from deep within my soul, a place where NO DISEASE can touch. Music allows me to tap into my creative outlet  and free my mind of  all its worries. I love to show people a good time and provide them with a similar escape from everyday life stressors. This entire process thus far has brought my cousins and I closer as family and for that reason alone I am forever grateful, and will continue to follow this path wherever it may lead. In the end, there is NOTHING in this world like FAMILY! The dreams we have are powerful ones, and we fully INTEND to make them a reality.

This roller coaster ride I call "life" certainly has its share of dips and flips. There are so many times that I get lost in my own thoughts while over analyzing my many limitations. My mind wonders about finding the perfect partner and the possibility of raising children one day. "Who will want to put up with my constant medical visits and medical equipment?" "Will I ever run through the park with my toddler?" After everything that I've been through, I have grown quite accustomed to the fact that intense paranoia is just another issue I need to constantly work through. Fortunately, I've nearly mastered the techniques of talking myself back to a place of security and comfort. I find it harder now more than ever to accept my situation because I have lost the ability to do things that were once effortless for me. Although I do my best to remind myself that "things could always be worse" and try never to take my blessings for granted, I am also very realistic in thinking that things could always be better as well. It is that second part however, that fuels my desire to push myself to the limit in order to achieve my goals. Strength and positivity are not words that can simply be spoken and then suddenly feel uplifted. One has to work for it! Pulling myself out of my bed and "cave" is sometimes one of the hardest parts of my day. And not because I'm tired but because I THINK about the extra effort that is required for me to carry out a peaceful normal day. Before even stepping out of bed, I have to disconnect from a ventilator which in and of itself is a process. Due to the fact that I have grown so accustomed to wearing leg braces for the last 3 years my ability to walk without them is significantly impaired. Anger and frustration start to come over me as I realize something as "involuntary" as breathing has become a daily chore for me to survive. These days its a constant struggle to focus on the good things when we are constantly bombarded by the negative energy that is polluting our environment. However, then there are times that I sit outside my home around the fire on a beautiful summer evening with my family and closest friends and it hits me as to just how LUCKY I am: The voice of my 4 year old niece telling me, "I Love You Uncle Christophe!" and there was no "running" necessary for her to say that, haha! Inside jokes with my sister, deep conversations with my brothers, dinner dates planned by my sister-in-law, words of wisdom from my one of a kind uncle, trips, movie nights, bar hopping, and just laughing with friends, and the intense love and support from ALL OF YOU.......all of this just to say, my life is by no means easy, but I can whole heartedly say it is MOST DEFINITELY WORTH IT!!

*THANK YOU to my loved ones for going on 30 Years of some of the MOST INCREDIBLE MEMORIES ONE PERSON CAN EXPERIENCE!!! Many more to come.....

and to my donors: your memory will live on in my words perminently, in my writing indefinitely, and in my heart forever... I LOVE YOU!

Tuesday, March 5, 2013

A Letter To My Donor....


YOU gave me the chance to SURVIVE, a NEW lease on life...

13 Years ago today, is when doctors put me under the knife.

Kissing friends and family, was NO piece of cake.

Knowing the chance was less than 50 percent, that I would even wake.

The second I opened my eyes, they welled up and filled with TEARS.

A possible end to my suffering, having been the "sick" child all these years.

For the first time since age 6,  was when I finally I felt somewhat "normal"

I played many sportS, and YES that is a plural.

By no means was it easy, the road was LONG and TOUGH

3 YEARS on dialysis, and I swore I'd had enough.

YOU gave me HOPE for my future. I excelled in academia.

Education always held great importance to me. Guess what?! I even got into Columbia.

I'm finally writing my autobiography, ready to share it with the WORLD.

Tell them who is CHRISTOPHE, that dude with the sweet gel curl.
The guy whose life you've changed. He lives LIFE TO IT'S FULLEST.

Strength isn't always about muscles. What's inside, eventually gets you through it.

I'll tell them about YOU and your COURAGE, I'll tell them YOU were SELFLESS.

I'll tell them how YOU temporarily stopped my pain, at a time when I was so helpless.

YOU gave me more time with my family, more time with my siblings.

They are the BEST PEOPLE on this EARTH, no really....I'm not kidding.

YOU gave me the chance to see my niece be born, she is my HEART and SOUL.

YOU gave me gifts money can't buy, like sharing time with my parents as they continue to grow old.

YOU gave me the chance to see my brother get married, you'd like his wife, one word: AMAZING!

YOU gave me the chance to fulfill my dreams,  with even still so many more awaiting. 

YOU gave me the time to create amazing memories. Spend it with life long friends.

YOU made me the man I am today. Don't worry, I promise to carry you until the END.

My boxer's name is BRANDI, catch her if you can?

She loves good ham and runs away. Her nickname? You guessed it,  Raisin Bran!

I'll tell you from now that I'M NOT PERFECT and will NEVER claim to be.

YOU've opened my eyes to many things, allowing me the power to really truly SEE. 

MY choices were not always the wisest, some will haunt my dreams forever.

But I refuse to focus on the negative. and repeat mistakes? Simply... NEVER!

So on this day I count my blessings, I stand loud and proud to SHARE

that On March 5, 2000

YOU gave me your HEART to bare.....................

( ______________________________ )

 It beats in your HONOR today!

in the end Je t'aime, I LOVE YOU, what more can I say?

- Mr. Recovery

*a special thank you to all doctors, nursing and staffing
New York Presbyterian Children's Hospital!
-"Amazing Things Are Happening Here!"
God Bless!

Wednesday, January 9, 2013

Mom's Near Brush with DEATH...Forever Thankful and Grateful!

     After a long day of writing, I was so excited to finally take a break and meet up with two of my favorite people, Diana and Pam! It had been a few weeks since our last hang out session and I was really looking forward to spending some time with my girls and just catching up on life. KIKU ( an asian habachi restaurant nearby) is our SPOT, and my mouth was watering from the second we decided that is where we would eat. I was about to jump in the shower when my mother randomly popped into my head.  I wanted to call her, but I quickly dismissed it knowing I had very little time to get ready. I can be such a "girl" and take forever, haha. Lately my intuition has been running at an ALL TIME HIGH. Over the years however, I've learned to follow my instincts and I have become much more aware of  the various "SIGNS" around me (finally catching up to my sister-law Tara and my Aunt Yanick in that regard, lol.) My thoughts were rather persistent and my mom was still on my mind even after getting out of the shower. So I decided to pause and check-in with her. As I reached for my phone on the charger, it started to ring and I could see mom's picture pop up on my screen. I smiled at the coincidence and answered, 
"Mom! That's SO funny I was just about to call you!!! I've been thinking about you for the last twenty minutes HAHA, what's up?"

My heart immediately dropped to my feet as I could tell by the tone of her voice something was drastically wrong! 
"Chris, I'm ok but I just had a serious freak accident on the Cross Bronx Expressway (I95)......a tire just hit my car and shattered my entire windshield (sobs)..... I'm covered in glass...oh my God...my legs..."
I was now in a full fledge panic, but knew that I had to remain calm for her sake. 
"Wait...so you're ok?! Where are you now mom?"

     My mind was racing as I pulled on my jeans and raced to finish getting dressed. My body was on autopilot and looking back I cannot believe how quickly I was moving. 
"I don't know! (sobs) Chris, nothing like this has ever happened to me before...I'm just driving...I'm so scared!! I couldn't get a hold of your brother Charles...ohhhh CHRISSSSS, MY GOD!!!!!"
"Mom, please you need to do me a favor and just take control of yourself, calm down, and pull over! I know you are in shock but you NEED to stop driving and make sure you're ok. I'm gonna find Todd and try calling Charles again, OK?!" 
     All the adrenaline in my body must have gone straight to my legs because I had made it up two flights of stairs in under a minute desperately looking for my sister's boyfriend for help. I quickly realized I was home alone and without a car. My fingers trembled as I dialed my brother Charles. A sense of relief came over me when he finally answered. For some reason talking to Claude always makes me feel like things are gonna be ok! I calmly explained the situation to him, and he immediately jumped in his car to rush to the aid of our mom. I felt so helpless at this point but all i could do was wait. I made my way back to my bathroom to finish getting ready for dinner. I barely started brushing my teeth before finding myself sobbing on the floor. 

"Holy shit.....what just happened," I thought to myself?!?! 

     Most people in my position would brush something like this off once knowing the person they care about is ok, but I could not help but think of how badly this could have turned out. Somehow when a major accident is averted the only people that truly understand the impact are the ones involved.  For example telling a friend, "Omg I tripped just before and almost broke my neck down a flight of stairs." To which they usually reply "But your ok right?! So its all good :)," quickly dismissing the severity of how bad the situation could have been. I find this to be incredibly annoying. I quickly pulled myself together and was out the door for my dinner date. Seeing Diana and Pam in the driveway put a smile on my face right away and I immediately felt comfortable. Talk about two genuinely GREAT people in my life, my boobalas! I explained the crazy story to them as we drove to the restaurant and they were both in complete shock. All my friends know my mother VERY WELL and so news like this is felt on a personal level. Several calls were made back and forth between my siblings and I, as they made their way to the scene of the accident. Isabelle and Joe were not far from the area and therefore decided to head over as well in order to drive my mother home later. 

     It was still hard to concentrate as we sat down for dinner. Shortly after, I received a call with an update from Charles. Usually the one to be calm and collected in these situations, by the tone of his voice, I could tell right away that we had just avoided a major crisis, 
"Chris man, you have NO IDEA how lucky we are that mom is still alive! If that tire had hit just an inch higher, mom would have been killed in that accident. Im sitting in the car now, and there is glass everywhere, the windshield is literally seconds away from caving in!" 
     The impact of his words were just too much to handle. as the all too familiar feeling that God had ONCE AGAIN saved us hit me like a ton of bricks. I politely excused myself from the tables as the tears streamed down my face. Another confirmation that someone or something is protecting my family and I.
"I don't even know what to say...this is exactly what I try to tell people everyday! I am just so happy and grateful that she is OK! Claude...WOW..."
"Chris I know.......I know.....we really need to be thankful and say a prayer tonight because mom was almost taken from us. This is crazy man! I love you so much and I want to see you soon ok?! The last few days I've been sick so I know we haven't gotten together but trust me we'll make up for the time. Now I really realize that life CANNOT be taken for granted! I'm still with mom now so I'll be in touch...."

     As I came in from dinner I rushed to find my mom in the house. I was instantly overcome with tears of joy as I saw her coming down the stairs from her bedroom. The slight possibility that I could have been visiting her in a hospital or worse, was enough to make me extremely happy and thankful. I gave her a huge hug and didn't let go! I've heard too many unfortunate stories in the last few months about accidents where other families weren't so lucky. I made sure to take a moment to APPRECIATE and CHERISH the fact that we WERE! There is something so incredible about the bond that we share as a family. With my parents recent divorce however, sometimes things seem so dysfunctional. BUT at the end of the day we are STILL A FAMILY! When the shit hits the fan we come together and we are there for each other! Nothing else matters! If something were to happen to ANY ONE of  us, we would all be devastated. Last night my mother's life was almost taken in a freak accident!  A random tire flew off a TRUCK and shattered her windshield in high speed traffic. Had the tire NOT hit the car bumper first before slamming into the glass, my mother would have been dead INSTANTLY! Take a moment to fully embrace what that means. Doing so is the only way you will understand the gravity of my message today! My mother was saved by a miracle tonight and there is NO DOUBT in my mind that she has a guardian angel watching over her! No amount of words could possibly express how utterly grateful I am that she is still with us today.  However, because of the way I choose to live MY LIFE, should God have decided it was her time, I know FULL well that my mother would have gone into heaven knowing EXACTLY how much I love her and just how much she means to me because I tell her ALL THE TIME! I don't sit and wait for crazy stuff like this to happen. Life is too precious to be taken for granted. Call me dramatic, call me sensitive.... but I prefer the term REALISTIC! Too many people live life as if they are invincible. They complain about all the stupid crap they've got going on and constantly fail to appreciate their blessings in life. Trust me, IT COULD ALWAYS BE WORSE (right Brandon?) Your ENTIRE LIFE CAN CHANGE at any minute of any day!  My mother was just casually driving home from work, minding her own business...believe me, I've seen it one too many times. So do yourself a favor, and express your feelings to the people you care about. Don't wait for something terrible to happen to be kind and loving. Mend and heal the broken relationships that are still worth saving because sometimes it's JUST NOT WORTH IT. Forget the petty garbage, move forward, and don't live your life with hate in your heart! They say, "you don't realize what you've got, till its GONE"......well I certainly DO....and so should YOU!

-Mr. Recovery

*JLA is OK everybody!!! Thank you so much for all your messages of concern! WE LOVE YOU MOM!!!

Thursday, January 3, 2013

Happy New Year: Remembering the Past but Looking Forward to the Future!!!

     The night air was refreshingly cool and crisp as I stood on the patio of The Bouwerie overlooking the snow covered golf course. I took a long deep breath in, and took a few minutes to appreciate the moment. It was 9pm on New Year's Eve, another year of trials, triumphs, and tribulations gone by. I could hear all the commotion inside as everyone hurried to make sure everything was in place for the party. One of my closest friend's, Keith Roche, owns the Bouwerie, and we teamed up together to throw what we hoped would be an elegant New Year's Eve bash. He and I are very similar in many ways, one of which being that we both absolutely LOVE to throw a great party. And ofcourse in true "Christophe fashion" we both agree that everything must be classy, on point, and done in style! Go Big or GO HOME baby! My adrenaline was at an all time high knowing that so much needed to be done in order to ensure that the night was a success. This is the stuff I live for. I love to show people a good time and what better way to do it than with delicious food and energetic music! My best friend Crystal Vargas and the one and only DJ LJ, were about to put on a show which I am sure most people were NOT prepared for. The mood was right and I could honestly feel the positive energy in the air. It was going to be a good night!! As guests began to arrive, my excitement only grew as I saw faces of people who I love and truly care about. Even my cousins from Queens made the trip out to New Jersey (STRONG) and that just completed the end of my year! I believe New Year's Eve is a time to celebrate all the memories of the past year, and to do it with the people who helped you create them...and that is exactly what I did! 
     Moments of laughter, tears, makeups, breakups and everything in between flashed through my mind. I was finally able to meet my half-brother Fabien this year, and this was a very big deal for me. It brought closure to some of my issues and I am extremely happy to finally be an influential part of his life. I have learned not to look back on the past with regret or take things too seriously because the truth is, doing so does absolutely NOTHING except torture you! Instead I choose to concentrate on the good times and the obstacles I was able to overcome. In the end, I am alive and that's all that matters to ME. Innocent lives being taken in storms, school shootings, drug overdose, and other random acts of terror are enough to make me realize JUST how lucky I am. Some of these people were perfectly healthy with no prior medical history and taken in the blink of an eye!!! Ill say it in every blog if need be: LIFE IS NOT GUARANTEED at any point! Do yourself a favor and don't take your life and those in it for granted. It is because of this reason that I feel particularly blessed. Looking forward, I turn 30 YEARS OLD this year........after it had been predicted by several doctors that I would most likely not live past my early teens, this is TRULY a miracle and I couldn't be more excited. The road certainly has not been easy, but DEFINITELY well worth every last second! I could hardly wrap my heart around the fact that only 3 short months ago, my left lung was collapsed and I found myself laying helplessly dressed in nothing but a hospital gown. Recovery was extremely tough and at first, I was honestly not sure if I was up for it. My body was already weak as it was, due to my condition. Add a debilitating surgery on top of it, and that is enough to make anyone feel defeated. Fortunately for me, the outpouring of support which I received from family and friends was enough to have me back on my feet in less than 1 month! Even still, the days were tough, nights were tougher! There were times that I was convinced it would NEVER get better. It took a lot of mental motivation, from deep inside, to make it through. Tonight however, I stood proud in my suit and tie, dressed to impress, and ready to celebrate another year of victory in my war against the grim reaper (that guy really is a persistent lil bastard). After enjoying a few cocktails at the top shelf open bar and delectable food from the buffet/carving stations the crowd took to the dance floor for the countdown to midnight. In last seconds of 2012, I made a point to say THANK YOU to God! 5......4.......3......2.....1....air horns blew, confetti blasted in the air (lol Keith), midnight kisses filled the room, champagne was toasted, and Crystal Vargas took to her percussion!! The dancing didn't stop till the house lights came on later that night. It was only after receiving both visual and verbal confirmation that everyone was having a wonderful time, that I was finally able to let loose a bit and enjoy myself as well! One of my main highlights for the evening was taking my mother onto the dancefloor to jam out to Danza Kuduro HAHA! There was something so incredibly special, yet ironic about being able to DANCE into the new year with the one person who never left my side after so many months laid up in a hospital bed and barely being able to make it up a flight of stairs. No words were spoken. None were needed. We have been through so much together that a simple smile was enough to know just how amazing this moment was. 
     As the night was ending, Keith busted my chops about the enormous mess of confetti that covered his dining room floor. We chuckled as we joked that confetti would still be turning up in the spring, haha. A quick high five and "french fries" solidified that the night however, was a HUGE SUCCESS! People were extremely happy and that's what mattered most! As I was walking out the door, my friend who works for Keith, King asked "so man, what's your New Years Resolution?" to which I replied, "just to keep doing what I'm doing man, LIVING!!!!!!!!" The truth is, I dont know what my future holds, and I don't allow myself to get carried away with over thinking about it either. Instead I have learned to cherish moments in the present. In a way, I have learned to slow down time and appreciate each MINUTE for what it is. This year, for example, my Christmas was complete as I looked around and saw my family, and the precious little face of my darling niece Vanessa! We were all healthy and together!Regardless of all my medical hurdles, I was able to accomplish a lot through opening up some very private parts of my life to the public eye. Writing has become very therapeutic for me and has allowed me to let go of any anger, hate, or pain and instead focus on the the positive things going on in my life! I feel that I was able to touch many lives with my story and it's only just the beginningMy TELL ALL autobiography is well underway and I am so excited to finish and share it with ALL of you! In the meantime I am actively doing whatever I can to help those in need. With the aid of many kind hearted people I was able to raise an incredible amount of donations for both Hurricane Sandy Relief Efforts as well as a Holiday Toy Drive for New York Presbyterian's Children's Hospital! It feels so good to be able to give back and help those in need in any small way that I can. I was put on this earth for a purpose and I finally know exactly what that is: to give people HOPE and inspire RECOVERY! Recovery of any kind, wether it be emotional or physical. If we all come together and lend a helping hand we can really make an impact not just on others but on OURSELVES! God Bless and I wish you ALL a very HAPPY and HEALTHY NEW YEAR!

-Mr. Recovery

*Please take a moment to remember the innocent young lives that were taken in the Sandy Hook Elementary Tragedy, those who lost their lives and were affected in any way by Hurricane Sandy, all who may have lost their lives to sickness or other unfortunate circumstances, all first responders, fire, police, and emt/volunteers that risked their lives everyday to help people, and all the troops that we have lost and those that continue to fight for OUR COUNTRY!!!

A Special Thank You to all who: donated to both my Hurricane Sandy Relief Drive and or Children's Hospital Toy Drive - both of which were a HUGE SUCCESS! Keith Roche, Dan Demiglio and all of the staff over at the Bouwerie! Your restaurant set our year off on the right foot! Crystal Vargas and DJ LJ of The Vinyl Percussion Show!- your music was perfect all night long. Amanda Merkel for her delicious specialty desserts. Sarah Francavilla for makeup - you do such beautiful work. Dave Falkenstern who was running a million errands behind the scenes to help put all the pieces together! And to everyone who came out for a good time,  because after all YOU are the primary reason the party was as spectacular as it was!