"Bad Days"

I can't really put a time frame on when it happens, it just does. The so-called "bad days". Out of nowhere I feel lost. I'm afraid. Somehow the positive, smiling, hopeful Christophe that everyone has grown to "know" and "admire" is merely a face plastered all over social media, a mask that is put on whenever stepping out of the comfort of my home. Do you know what I really go through day to day? Because I can assure you I do my best to make "this" look good! The raw truth is that there are nights I lay in bed crying as my mind yells relentless reminders of everything that's wrong, everything that just SUCKS! I'm instantly overwhelmed.

Since the age of six I've been battling illness with the belief that at some point all my internal strength and faith would prevail, putting my fight to an end. The prayers, the diligence, and the sacrifices would all finally mean something. I would be free to wake up one morning without worrying "how am I going to feel today?" Nope. Fakeout!  Instead, here I am, at a total stand still. Somehow after all that I've been through: my heart being ripped out of my chest (both physically and emotionally), my kidney's failing, a tube now in my neck, my battle with my sexual identity, my parents nasty divorce, and my fight to overcome substance abuse...the deterioration of my physical functionality and my independence as a grown man is eating me up more than anything. I don't like pity, I don't like being a burden, I don't like asking for help, and I don't like depending on people, especially if it means helping me off the damn toilet. My legs are dying to give up on me. It's become more convenient to pee in a water bottle at the side of my bed rather than get up, disconnect from my ventilator, and walk the ten steps to the bathroom while taking the risk of falling, pissing myself, or both. 

Believe it or not I could handle my legs giving out, I could work with that. But when it's becomes a tiring process to cut up a nice juicy steak prepared by my cousin Manny (slathered with my cousin Mike's sweet chilli sauce of course) because my arms wanna bitch out on me too, that just annoys the hell out of me! When it takes certain careful maneuvering to shave my beard, do my hair, or take off a shirt, sometimes I just sit on my bed and curse the sky. Getting up from bed is a workout. Picking something up off the ground? Forget it. Reaching above my head? Good luck. Why am I always on my phone? Yes, I'm addicted to social media, GUILTY 🙋🏻 (snapchat:Christoballer 😉) but sometimes it just takes too much energy to hold up my head straight enough to look you in the face. But I'm not about to tell you that. Christophe isn't "weak" pffffft.

I think the fact that for the first time my circumstances are totally out of my hands, is what has me hopping in and out of such a dark place. There is no cure, no treatment, and nothing in the works to do so. Doctors advise me not to remain stagnant and yet overworking my muscles can also cause the muscle fibers to break down faster. When do I get a break? When does it end? 

Just when all seems hopeless, just when everything inside me wants to give up, that's when it happens...PERSPECTIVE. 

"Chris hunny, it's been so long since I've given you a hug," says my mother wrapping her arms tightly around me not only reminding me of everything we have been through during my thirty-two years on this earth, but that no matter how old I get I'll always be her baby boy that she will love and protect. 

"Hi Chris!" shouts my two-year old godson enthusiastically with a smile as I walk into my brother's apartment reminding me that I would suffer the worst pains and struggles of life if it meant that he didn't have to.

"Let's do dinner next week please? Thanks!" reads a late night text from sister, reminding me that no matter how busy she gets, or what's going on in her life she'll stop it all just to catch up and check in on me. 

"Chris I was listening to a podcast today that was talking about some really interesting developments in fighting Myopathies. Here's the link, I want you to check it out..." reads a message from my younger brother reminding me that medicine is evolving everyday and that it would just be stupid to give up hope now.

A single picture emailed by my older brother of my niece and nephew, reminding me that I still have SO much left to live for. My baby sister is getting married in August! ❤️ 

We all get down. We all have things going on, we all have "bad days". But is that reason enough to discount the good ones? Is that reason enough to be angry at the world and be miserable? If we have the choice, why focus on the negative? Why allow that to be what gets the best of us? As my Uncle Carlos says, "any day outside of the hospital, should be a good day." And he's right! I'd much rather be binge watching trash TV from my cozy bed than attached to a holter monitor, with a nurse interrupting every thirty minutes in the ICU. I need to be thankful, I need to stay happy. Aside from the weakness I actually feel really good! As nurses run down the list of side affects before my 3 month trach change procedure I realize I'm so blessed to say "no" to things like "diahhrea? nausea? dizziness? blurred vision? pain? bleeding? loss of appetite? etc." But switching my mind frame takes work. It's a cycle and the bad days will always come. However remembering the love that surrounds me and to change my perspective is how I'll pull my self out of them every single time. 

I'm not alone. I I know I never will be.

- 1 Man, 3 Hearts

*I gladly welcome any questions. My life is officially an open book. So feel free to inquire within! 

YOU ARE NOT ALONE!

     I had to learn the hard way that this place we call earth (considered by many to be hell) can be quite a terrifying experience at times. It's difficult, and getting passed the ugly can be so overwhelming. Over the course of my life, I've been scared, I've been let down, I've been lost, I've been depressed, and I've been devastated. Ive been "beaten" and broken, put back together, only to be broken back down again and again. My entire life since the age of six has consisted of just "trying to feel better" in all senses of the word. I have no idea what it really means to just be OK. Every hurdle I seem to overcome seems to be met by another, anxiously awaiting its turn to attack. I have to appreciate all the good times, because I'm consistently treading a line of "is this all too good to be true?" Sometimes I really wonder if someone above is laughing at me while my sense of happiness is repeatedly challenged. Is this supposed to be some kind of sick joke?

     In recent years, I have realized however, that I am not alone in my feelings. Almost everything that I have been through, someone, somewhere can relate. Last night I had such a refreshing conversation with a young woman fighting her own battle with MFM. Sharing our fears and frustrations left me feeling not only relieved but secure in knowing that we are strangely in this fight together. Better than any session with a therapist. As people, we are constantly looking to one another to hopefully prove that we can somehow overcome. Someone to show us that it doesn't have to be this way, you can find reasons to smile through the pain. Sometimes even just one person can make all the difference on a bad day. Venting is everything! We all get caught up, so don't give up on people because of their silly mistakes. It's not worth it. Stand together and fight for them! My hope is that in reading my book you can see that beyond your own personal cloud of darkness, happiness still exists. Whether you may be living with a chronic illness, battling drug addiction, conflicted about your sexuality, struggling to forgive those who have hurt you deeply, or losing a dear loved one...I can relate to you. I can show you that somewhere in there life is still worth living, life is still worth appreciating. You have to change your mental perspective! You have to decide that you want to fight and that you'll do whatever necessary to get passed the struggle. As I mention in my memoir "In life, no matter how ugly things get, you can always find the beauty. You simply have to know where to look." I have learned to appreciate so much in my life, because so much as been taken away from me. I am grateful to still be alive and be surrounded by people who love and support me. I am  still working however, to find true happiness within myself. For example. MFM is attempting to rob me of the belief that I am capable of being loved by a life partner. Who would ever knowingly take on such a burden? As my condition progresses, so does my feeling that I will just never be good enough. Fortunately I am blessed to have people in my life that remind me how unrealistic that is and how special I am everyday. It really doesn't hurt to pay someone a compliment. Be kind and courteous, maybe find it somewhere inside you to share a smile--you never know what someone is going through and how much that can help. Even just a simple head nod could be a reminder that we are NOT ALONE and if anything "I've got you." So many of my friends and family make me feel safe when there is a million reasons for me not to. We balance each other out, and when I'm with them I forget about all the madness. At the end of it all, we have each other. I don't consider these moments as an escape, but rather I look at them as a reminder that their are certain things that make life worth loving and enjoying.

If even ONE life is affected positively after reading my book. Then I have certainly done my job.

-1 Man, 3 Hearts and STILL ALIVE.

Book can be purchased at the link below:

1 Man, 3 Hearts, 9 Lives

Knocked Down

     It wasn't until pulling into my driveway on that sunny Thursday morning in July, that it really hit me that I was going to be home alone for the entire weekend. We had just celebrated my baby sister's beautiful engagement party, and now she was heading to Miami with some girlfriends. I had just dropped her around the corner at a friend's house, where her and her friends would wait for their ride to the airport. Her fiancé lives with us, but he was already down in New Orleans with his boys for a close friend's bachelor party. My mom was at work but would be spending the rest of the weekend with her boyfriend. How embarrassing, that as a 32 year old man, I am now forced to live in fear when being left all alone. In theory, I was actually excited to have the freedom of being on my own for a few days. I enjoy time to myself, and I can appreciate the peace and quiet. However, being that my physical health is currently compromised, the chances of something going wrong are significantly greater for me as opposed to someone else my age, and that is scary.
     I usually don't like to entertain such negative thoughts as I do believe in the law of attraction. If I think I'm going to fall, chances are, I'm going to fall. But I let out a sigh of relief after making it down my basement stairs and into my apartment door safely. It was still early, and I had been up most of the night wrapping up some editing for my upcoming book, 1 Man, 3 Hearts, 9 Lives, so I decided to head back to bed for a couple hours. I went to the bathroom first, then grabbed some water, and carelessly made my way down the hall to my bedroom. I threw the bottles of water on my bed, tossed my keys on my dresser and was about to lay down when my right foot clipped the the carpet at the foot of my bed. Its true when they say falling happens in slow motion. I distinctly remember realizing that I was barely missing my mattress and headed straight for the floor. The left side of my body hit the mattress first before I rolled off, slammed my head on the metal bed frame, and knocked out for a few seconds. 
     When I finally came to, panic set in. I felt my heart rate spike instantly, and my fingers began to tingle. No longer strong enough to get up from the floor on my own, I wasn't quite sure what to do. My ears were ringing, I was dizzy, and I felt like I couldn't breathe. My fear became so intense I almost pissed myself! Suddenly I shoved my hand into the right pocket of my sweatpants remembering I still had my phone. I had to slow down my breathing if I was going to be able to communicate anything I thought to myself as I dialed frantically. My sister was not scheduled to head out for another 15 minutes, and so my first thought was to call her as she most likely had not left yet. 

"Hello?" she responded anxiously.

"Isa, I fell and I can't get up," I managed to say while remembering a TV commercial I used to mock growing up. The irony.

"Ok, Chris I'll be right there ok?! Just stay calm. CHRISTOPHE FELL..." I could hear her shout out before hanging up the phone.

     My eyes scanned the room for ways to pull myself up.  I was finally able to get my right arm up to my side table and managed to pull myself up into a sitting position. I relied on the fact that my sister would soon be there in order to calm down. Within a few seconds I could here her and her friend racing down the stairs,

"Chris! Christophe! I'm here!" 

Hearing her voice was all I needed to slow down my heart rate as I closed my eyes in relief. One leg was still twisted and so I can only imagine their thoughts as they entered the room. Without hesitation they grabbed me under my arms and helped me up slowly. I then carefully sat down on my bed. 

"Chris are you ok? Did you hurt anything? How did you fall? That must have been so scary right?!" my sister asked one after the other.

"I'm ok now I promise, you guys have a flight to catch. I'm good now. Go!" I said looking my sister in the eyes to let her know I was serious. 

     I never want my sister to worry. It wasn't until she reluctantly left however that I began to register that I had just hit my head pretty hard. My knee was also throbbing after twisting it in the process. I dropped my head and proceeded to sob. I wasn't crying because of the pain. I was just so grateful my sister and her friend were able to come to my rescue while simultaneously grieving the current state of what my life has come to. What would I have done without them? What if my phone was dead? How long would it have been before someone found me? Frustration overcame me as I truly knew that there wasn't much I could do to change my circumstances. As I cried my attention was suddenly drawn to the dogtag hanging from my neck swaying back and forth. It was given to me by four of my closest friends in the world, and I never take it off. It reads, 

"Strength isn't always about muscles, what's inside eventually gets you through it" - BCEK 

     A quote taken from my upcoming book. My very own words were staring me in the face, reminding me that this was NOT the time to give in. This was NOT the time to give up. Ofcourse the road ahead isn't going to be easy, however this is my journey. This is God's plan for me. I began to remember my struggle. How long its been already, and all the things I'd overcome. Was I really about to let one fall impact me? My sobs turned to laughs as I realized the insignificance of it all. I was ok. I am going to be ok. Life is a constant fight. Just when things seem perfect, your entire world can change. Count your blessings, spread kindness and love, enjoy your loved ones. There are so many things I hate about my situation, and even after writing this blog I'm sure my perseverance will continue to be challenged. But for everyone facing a situation that seems hopeless, remember this, life will knock you straight to the ground. Sometimes you'll be too weak to getup. You'll panic! You'll think you're all alone. And just when all seems hopeless, angels may just come to your rescue and help you get back up!

T.N.S. - You were always one of my angels, only now you are in the sky. Thank you for always helping me get back up. <3

In Loving Memory of Brandi! My dog, my best friend...

It was early in the summer of 2004 when our precious little pup came into our lives. I had been in and out of the hospital at the time due to complications with my first transplanted heart. My mom thought that having a dog in our lives would bring about some positive vibes and help keep my spirits up. After four years of feeling so healthy, I got very careless with taking my anti-rejection meds. This reckless behavior led to seven long months in the hospital and eventually my second heart transplant.

I knew I had messed up big time when I started having heart palpitations sometime during the end of May '04. My health declined rapidly in the weeks to follow. Every time I thought I was progressing, something would happen to land me right back in the hospital. It was torture. However, my family and I refused to give in to the belief that this was a problem that could not be fixed with a boost in steroid doses or some other form of treatment. Claude and I had plans to move into Hoboken that fall and despite my not feeling so well we moved forward with our apartment hunting. This helped me take my mind off things. I couldn't wait to finally be out on my own and living with my best friend, my brother! We both also really wanted a dog and figured it would be a good idea to get one while still living at home in order to give him/her proper house training. We had wanted a dog all our lives, but our parents had concerns that the responsibilities of owning a pet would eventually fall back on them. Being that they both worked serious jobs this was not an option. Our nanny and housekeeper Therese, did not like dogs very much, and she insisted that taking care of one was not part of her job description. However, now that Claude and I were older and prepared to move out on our own, my mother agreed to the decision. 

She was only six weeks old when we got her and we knew instantly that she had to be ours from the second we laid eyes on her. I didn't see any other dog in the room but her.

"Do you want to play with her?" asked an employee who picked up on my interest.

Claude and I sat in the tiny cubicle with the soon to be the newest member of our family for what seemed like an eternity. She was so sweet, so innocent, and absolutely adorable. She loved Claude instantly and had him smiling from ear to ear. Seeing the joy that tiny animal brought to her sons left no room for my mother to even second guess her choice. I still couldn't even believe it was really happening. My excitement only grew as I walked our new puppy out to the car on the leash; an excited pep in every one of her tiny steps. I swear it's as if she knew she was going home. Isabelle was scared of her at first,  which Claude and I found to be hysterical, but after just a few minutes she couldn't help but fall in love as well. Therese, was not happy about this situation at all. She was upset that no one had informed her of such a serious decision and was also worried that all responsibilities would eventually fall on her. However, I did my very best to reassure her that the decision to get a dog was a spontaneous one, and that Claude and I would take on the entire workload. We all sat together, and one by one took turns hugging her and playing with her on the kitchen floor. My mother never wanted a dog, and so I was particularly shocked to see her rolling on the floor bonding with our new pup. I later found out that she was just scared to love something so much knowing that one day she would have to eventually let go. My mother was fully aware that loss is a part of life, however the notion to knowingly introduce that into her life was a difficult concept for her to grasp. 

"What should we name her guys?" asked Claude. "I think Mom should name her since she got her, haha."

"Let's call her BRANDI!" said my mom without hesitation.

My siblings and I stared at one another in confusion in regards to my mother's immediate response. It was a pretty name so we liked it. It was only years later that we found out during a dinner conversation that BRANDI'S fawn like colors reminded my mom of the little deer she had seen in the famous Disney movie called, "BAMBI". However, my mother grew up in Jamaica so, hence the confusion, lol.

Since that day BRANDI instantly became a part of our family. I never owned a pet of that magnitude prior to her and so I was unaware of the vast impact she would have on my life. BRANDI was so much more than a "just a dog". She was a powerful life-force, she was an unconditionally loving face at the door, she was a nurturer through sickness and health, she was our BEST FRIEND! I spent 7 months in the hospital waiting for my second transplant the year we got her, and during one of my weakest moments my family surprised me by bringing BRANDI to visit me. Seeing her cute little face reminded me that I had things waiting for me out in the world to LIVE for. Seeing her gave me just one more reason to FIGHT! 

There were countless times I would come home from the hospital, and she would lay at my side watching over me for days on end. I loved her so much that I had no concern for "germs", and I would let her sleep with me every night. Even though she couldn't talk, her presence alone said enough. She was a companion, and she could change the worst of my moods. I still think about her all the time, and I laugh at all the crazy shit she put me through. I know without a doubt that we gave her a beautiful life but she also did the same for us. She brought us together as a family and reminded us of the true innocence that still remains in life. I miss her a lot but I am happy for the time that we had together. I'll always talk about her. I'll always remember her, and for as long as I am ALIVE...her spirit will be too!

We love you BRANDI! I'll see you on the rainbow bridge someday...

 RIP <3 7/16/14 <3

Transparency & Positivity

     After OVERCOMING so many medical obstacles and CONQURING so many difficult battles, for the first time I seem to be faced with a medical problem I cannot SOLVE. My condition is progressive, which technically means it will only get worse over time. I have hit a dead end in the rat maze. I am frustrated. How is it that I spent all of my life FIGHTING illness only to find myself in such a hopeless position. And that's when I remember how far I've come and laugh... LIFE is testing me again and clearly still unaware that I WILL NEVER GIVE UP! I am a FIGHTER & a SURVIVOR. I am here for a REASON, and it's starting to become quite clear what that is. 

     It's hard for most of us to wake up in 2015 and not have something to worry about. The world we live in is a chaotic one; full of constant sensory overload and an unlimited all access pass into Pandora's box. We all have things going on in our lives, we all have to demons to face, and challenges we must OVERCOME. Social, personal, serious, trivial, and everything in between from loss, illness, substance abuse, divorce, sexual confusion,  racism, domestic violence, child abuse, poverty, infidelity, and the list goes on..

     My current situation as it stands is a tough one. I am living with Myofibrillar Myopathy. My body is slowly giving up on me and it seems as though there is nothing I can do to stop it. There is no treatment for what I have. Between a lack of funding and so few people even being diagnosed there are no clinical trials in progress. My legs just want to quit on me. I swear I can practically hear my wheelchair calling out to me as I walk by it.

 "Why do you even bother? Give up already. Just sit."

     My arms, feeling left out, have decided to compete with my legs for weakness. This makes daily tasks more challenging. As if a lot of work doesn't go into LOOKING AS GOOD AS I DO as it stands, LOL. Walking is getting harder and running is something I'm only lucky enough to experience in a dream  every now and again. Not only I can't chase my niece and nephew in the park, I can't pick them up and hold them either. If you have children, TREASURE THESE MOMENTS! Being an adult of divorced parents can be a nightmare. Certain HAPPY moments of pride or accomplishment are potentially tainted by a dark cloud of hate and disgust. As if all of this wasn't enough, mix in today's social living pressures and personal insecurities. My life is no walk in the park, but I do my best to always look my best and make it seem that way. 

     The way I see it, things could always be worse and most situations can be approached in one of two ways. POSITIVE and negative. As cliché  as this idea may seem, the difficult task of taking a POSITIVE approach to a rather dreadful situation is what is keeping me ALIVE to this day. If you can find yourself in a negative frame of mind and switch ur thought pattern you may be surprised at the results you see. Positive thinking is usually contagious and can catch like wildfire. The same however goes for negative thinking. Try to gain some perspective. Take a step back from your emotions and analyze your feelings in proportion to other issues going on in your life. You may find that some of the things you end up worrying about the most, are also the most illogical and senseless. If you look back you will notice certain words are bolded and highlighted. This is because amidst all the chaos written on this page, with everything I am currently facing in my life, these are the words I choose to focus on.

     When you look at my track record, it is quite evident that all the odds were against me, but I OVERCAME, time and time again. Unfortunately, I know many people who were not as lucky and died for less. The fight has been long and hard; I have the wounds and scars to prove it. I AM FORTUNATE AND I AM HAPPY! I count my BLESSINGS. It really is the little things. Looking into the eyes of my niece and nephew make me happy. Time with my FAMILY makes me happy. GOOD FOOD and GOOD MUSIC make me happy. A NICE DAY makes me happy. My FAITH KEEPS ME HAPPY!  TRUE FRIENDS! And even if for just those reasons alone, I will continue fighting, day after day, refusing to allow LIFE to succeed in it's desperate attempts to break me. I truly believe people can learn a lot from my experiences. My autobiography is almost complete; a memoir built on the premise of TRANSPARENCY and POSITIVITY!

I know I will be ok, because in all of my battles  #LOVEWINS 

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 constant, dedicated, 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!

A Letter To My Donor....

13 YEARS Ago TODAY...

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

 at 

New York Presbyterian Children's Hospital!

-"Amazing Things Are Happening Here!"

God Bless!