Tuesday, April 11, 2017

Stripped Innocence

"Hiiii Uncle Christophe!"

     7:00 pm on the dot. My munchkin is never late. As I swiped to accept the incoming Skype call, I was immediately met with a coy smile on the face of my eight year-old niece. Her excitement was undeniable, which made me feel so loved.

"Hiiiii Vanessa!" I replied enthusiastically, as I smiled back at her.

"Can you please fix your computer? I can't see your whole face." 

"Of course I can!" I chuckled.

"Muchhhhh better!" ๐Ÿ‘Œ๐Ÿฝ

     It's details like that, that show me how much she genuinely cares. 

     I had a conversation with my sister-in-law Gita, over the holidays, in which she expressed wanting to encourage Vanessa to be more advanced in her school classes. We therefore agreed that it would be a great idea for me to tutor her over Skype once a week. Our designated day for "class"' fluctuates between Tuesday's and Thursday's, depending on our schedules. However, by Monday afternoon I'm usually receiving a text from my little one, anxious to confirm the day and time. 

     I try to always be ready on time to answer our scheduled calls. Of course things come up occasionally, but overall I want my niece to know that I am a man of my word, and that she can always rely on me to be there for her, no matter the distance between us. 

"How was school today? How was your week?" 

"It was goooood, oh oh, guess what Uncle Christophe?! I have off next week, it's Spring break. And when I don't have school the next day, I get to stay up until 10pm instead of 9pm! So that means I have a whole extra hour with you!" 

"Oh wow, so cool," I replied, "hmmm we're gonna have to figure out something fun to do after we finish with our work!"

"Maybe we can play hangman! Or we can do those words puzzles again? Oh! oh! Or I can show you my rock collection!" she exclaimed.

You'd be surprised at all the creative tasks we come up with to fill our 90 minute time slots, and through a computer screen no less. We have so much fun together.

The benefits of our arrangement are mutual. This weekly interaction has allowed me the opportunity not only to contribute in developing my niece's academic skills, but to also nourish the already present bond we share. I take my role as an uncle very seriously. Being that I myself am so close with each of my aunts and uncles, it is something that is very important to me. All my aunts and uncles have contributed to my life in so many ways serving as sources of crucial guidance and unforgettable fun. Therefore, I am fully aware of how fulfilling & beneficial such a relationship can be. I do everything to reinforce that connection with my own niece and nephews.

"Ok, so my Daddy says I have to finish my homework with you and all our workbook exercises before I can get my tablet." 

She lifts up an incomplete math assignment and the scholastic reading comprehension workbook that I had sent her. I have my own copy of the workbook as well. This makes it easier for me to direct her and follow along with her problem solving skills as we go through the various exercises. After a few minutes of working, Vanessa puts down her pencil in a very businesslike like manner and looks up at me.  

"Uncle Christophe? Can I tell you something and promise you won't be upset?"

"Of course sweetie, you can always talk to me about anything. What's up?" 

"Ok...so I've been telling my friends at school all about you and about our classes every week. Well, I wanted to show them what you look like, so I brought in a picture of you with me to school the other day..."

She seems more hesitant now as I notice her eyes shift to the floor, unable to maintain eye contact. 

"And some of the kids had really nice things to say about you, like how cool you were and stuff! I even told them that you wrote a book and that you were an author! But...some of the other kids...well they were really mean and didn't have such nice things to say about you. They said you look gross with that thing in your neck and that you look creepy."

She finally manages to look at me, but in a way that was cautiously gauging my reaction to the news she had just shared with me. 

"Honestly, it broke my heart Uncle Christophe. I ran to the bathroom and I cried."

Her eyes were now glossed over as they welled up with water. I could feel a lump begin to form in my own throat as well. I was instantly overwhelmed at the love and affection shown by my precious girl. I looked at her sweet face realizing that another layer of innocence was about to be peeled away as I proceeded to explain to her one of the harsh realities of the world we live in. 

"Awww Vanessa, I don't want you to be sad. I understand how you feel, but I want to explain something to you, ok? Unfortunately, you are going to learn that people can be very cruel...some on purpose, others because they just don't know any better. Not everyone is going to like you. In fact more times than not, someone will always have something negative to say. People also tend to be scared of what they don't understand sometimes. Your friends don't know me like you do. They've probably never seen anyone with a trach before and so that's weird to them. Plus, I don't treat them special and spoil them like I do for you. So what they may think doesn't bother me, trust me. I've learned not to care what strangers or people who don't know me think about me. But you know whose opinion DOES matter to me? Yours! Your mommy and daddy's opinion. Auntie Isabelle, Uncle Joe, Uncle Claudie, Auntie Tara, etc. even little Aleks...those are the people whose opinions matter."

"Um Uncle Christophe. No offense, but I think Aleks is still too little to have an opinion yet."

I laughed. She was right, her little brother Aleks just turned one only a few weeks ago. I love the way her mind works, I swear I can never get anything past her. She's always been that way though, so alert. However, my munchkin wasn't so little anymore and that reality was hitting hard. She was growing up quickly, right in front of my eyes and there was no stopping it. Regardless of how much I try to protect her and shield her from "life" she is bound to be exposed to things beyond anyone's control. The best I can do, as her uncle and role model, is to be there to explain things to her, help her to make sense of her own feelings & emotions, and to always support her, no matter what! 

"Ugh, thank goodness. Talk about a weight off my shoulders. I was so worried you were going to be upset and cry or something when I told you," she said releasing the tension in her shoulders and letting out a heavy breath, "seeing you not care makes me feel sooooo much better." 

"Oh yeah. I'm fine! I'm just happy you know that you can always talk to me about these things. That makes me so proud!"

"Yeaaaaa, I know! Ok. Can we get back to work now? I don't want to talk about this sad stuff anymore."

"Sure we can, haha!" 

Again, so businesslike that it made me laugh. As I watched my niece get back to work, I took a second to savor this moment. There were so many nights I lay in bed anxious that my physical inabilities would compromise my role as an uncle. And yet, this was proof that I couldn't have been more wrong about such an assumption.

"I love you Uncle Christophe, ok problem #4..."



Monday, April 3, 2017


     I came so close to death that it took quite some time for me to finally shake the eerie feeling of her cold bony grip tightly wrapped around my neck. As you know by now, I have been through pain, torture, and sheer misery on the deepest of physical and emotional levels. Nearly crippled by my anxiety, there were countless times I didn't know how I would survive. Yet here I stand! The obstacles I faced relentlessly put me through the ringer. However, I was simultaneously forced to re-evaluate the meaning of my life and everything in it. From it all, I managed to take away two very valuable and important lessons: Perspective & Appreciation! 

     You see, life has this subtle way of setting us on autopilot. Most of us aren't even aware of when it happens, until it's too late. We get caught up in our routine. We go through our daily motions taking so many people and things for granted. We get complacent and comfortable. The majority of our time, is spent worrying and our focus is on all the wrong things. We cancel plans without hesitation because decidedly, "there's always a next time." Then, in an instant, everything gets turned upside down. The world as we know it has drastically changed without warning and we weren't prepared. Suddenly the time comes when you would do anything for that "annoying" phone call from mom reminding you to do things you've already done. Time is fleeting...the sand in our hourglass perceptionally deceptive, falling much faster than it appears. Those moments we put off are gone forever, never to return...

     Sadly enough it's the terminally ill cancer patient who is quicker to cross items off his/her bucket list as opposed to the seemingly healthy person who could very well drop dead from a heart attack or get hit by a car at any given moment. Instead of fulfilling their dreams they live in state of constant monotony. I'm not trying to be morbid, that's not the point. On the contrary, I'm simply trying to reinforce the idea that time is guaranteed to NO ONE. We should ALL be taking full advantage. And yet so many of us wake up failing to seize and make the most of every day, or every breath for that matter. I am no exception. I'll never forget the first morning I woke up after my tracheotomy. It was a huge reality check for me that even in what appears to be the most dreadful of circumstances, it can always be worse! In a matter of hours, I had gone from wishing to breath the fresh outdoor air to yearning for any air that wasn't being artificially produced by a machine through a tube in my throat. The grass is always greener, until you realize it was just nice to have a yard to begin with. Thankfully, I now embrace the fact that out of my limitations was born the desire to take hold of my life and turn it into a legacy that I can be proud of. The acknowledgment of my blessings allows me to live my life to the fullest, and to LIVE FOR MYSELF! The more self aware I become, the less and less I feel tangled up in the imposed social constraints of society. At the end of the day my opinion of myself is what TRULY matters. I am happy with who I am. I view being different as being memorable. I appreciate that my story is so unique in nature! 

Live your life, before your last grain of sand falls!

     Travel! See the world. Don't hold grudges. Holding hate in your heart is so unhealthy. The worst thing you can do is go to bed mad. ListenYou can learn a lot. You never know when someone has something deep they want to share. Don't be stubborn, you're not always going to be right. If you feel like saying, "I love you" SAY IT! Be spontaneous, spoil your loved ones for no reason. If you see something they'd like, why wait months for a birthday or holiday to let them know they are special?! Spoil yourself too. No one should be rich in the cemetery. Unfortunately, none of that money can go with you! Build on genuine relationships, and don't be afraid to let go of the ones dragging you down. Some friendships are seasonal. Your most important relationship should be the one with yourself. It's ok to be selfish from time to time. You should be the most important person to youIf you are not ok, you will hardly be in a position to help anyone else you care about. 

     Don't live in fear! Try new things, even if you hate it afterwards. At least then you'll know for sure. The phrase "what if" shouldn't exist in your vocabulary. If it's something positive, make it happen. If it's something negative, then it's not even worth putting that energy into the universe. Project positive thoughts and affirmations. Having a rough start to your day? The worst thing you can do is decide that's how the rest of the day will play out. We manifest our own reality. Reach out to your relatives, and not just the older ones. The tendency is to put more energy into the people in life that "appear" to have expiration date when the truth is we ALL do. So embrace the existence of anyone who is meaningful to you. Nurture ALL your close relationships.

"Grow from the things you go through"

     Don't live in your past but rather learn from it. Set goals for yourself. Take steps towards fulfilling those goals. Take extra long showers. Don't be afraid to cry in movies (it means you have empathy). Watch the sunset! Walk in the rain! LISTEN TO MUSIC! TAKE PICTURES! SMILE! PUT AWAY YOUR PHONE (me)! 

Don't find yourself on autopilot for too long because the years will pass you by quicker than you realize. It takes work, it takes encouragement. We are all forever works in progress. You won't achieve perfection, but at the very least, YOU should be the one finding reasons to laugh everyday...not the devil! 

1 Man, 3 Hearts, and STILL ALIVE!


Tuesday, March 28, 2017

Devil's Laughter

     The day I fell and split open my scalp on my cold bathroom tiles was when I saw him again, the devil, chuckling in the corner. Blood was slowly pouring out of a deep gash in the back of my head as I screamed out repeatedly for help. All he could do was sit there with a shit eating grin plastered on his face, almost as if to ask, "had enough yet?"

     8 staples later, everything had changed. I was covered by a cloud of darkness. My will to remain positive and motivated was depleted. I had lost hope. The future seemed so bleek with no salvation in sight. How the hell was I back here, AGAIN?? After that incident, I couldn't sleep. I couldn't eat. I was losing weight that my already frail 5'11 112 lb body could not afford to lose. I had anxiety nearly 24/7. I was afraid to do anything without getting hurt again. I shut down and shut everyone out too. Instead, I hid behind smiles that had merely faded into a series of throwback Thursday photos. This wasn't me. Yet I seemed powerless to change it. I was depressed.

     He was right to question me I suppose, the devil. At that point, I didn't know how much more I could take. Little by little, my independence was being robbed from me. I cried all the time. My mind swirling with anxiety every morning when it came time to pull myself up out of bed or get myself up from the toilet. Driving, something I love, was no longer safe and therefore not an option. I was no longer able to shower alone for safety reasons, and needed assistance getting dressed. My body was steadily getting weaker, and I was pretty much wheelchair dependent. By now I had convinced myself that I was rapidly approaching a vegetative state where I'd be force fed food while watching reruns of Friends unable to enjoy any true quality of life. The space fillers faded away and my circle had become smaller than ever. Oddly I like it better this way. Isn't life funny?! It was the unsuspecting ones who checked in on me regularly and provided assistance without hesitation. Other friends served simply as a brief escape from it all and for that I was so grateful.

     Uncle Carlos is a huge advocate of meditation and was insistent that I try it. He saw first hand that I had lost my spirit and that had him really worried.

"Without your spirit, you are NATTING!" he would shout in his heavy Portuguese accent.

     Quite frankly he mentioned it so damn much it's a wonder why I even gave it a shot. I was headed Upstate with my family for New Years weekend and being that we'd have limited service up in the mountains this seemed an appropriate way to kick things off, clear my head. Fully dressed with my bags and vent equipment packed, I sat on my bed and closed my eyes; my sister still needed an extra 15 to get ready so it worked out. Wellllllll not quite. It was actually useless. No matter how hard I tried I just couldn't quiet my thoughts enough to concentrate on feeling peaceful.

"God, I hope I'm not forgetting anything...what if get stuck on the toilet in the cabin? Will I be able to get up out of the bed? What if I fall again? What if I have a panic attack?"

     One anxious thought ran into the next. Uncle Carlos had also mentioned that meditation takes practice and so I was not surprised that I was unable to concentrate this time around. 

     I gave up. I opened my eyes and cursed the ceiling.

"Music it is..." I decided as I put in my headphones and hit play on a recent mix my cousin Manny had sent me. The cool melody was starting to calm me as I found myself staring at the collage of pictures on my wall. These pictures had been up for years and somehow I had never quite looked at them the way I did on that day. As I scanned the faces, all the conversations of support and acts of kindness that I had been blessed with during my recent dark months replayed in my mind. My heart started to race with excitement because I could feel it coming back...my motivation, my positivity, my will to SURVIVE! All the reasons were right in front of my face.

"Ugh I'm so sorry flip," said my sister as she caught her breath walking into my room. "Crazy life. Just had to make sure we had everything before coming to get you. I double checked all your meds and equipment. I brought you an extra pillow. Clarke put wheelchair in the car, we'll pack the walker once we're out there. Brought a urinal in case you need to pee in an emergency. We're gonna pick up breakfast on the way. I'll set the house alarm and lock up. Soooo you reads for 2017 Freds?"

     I had to laugh. Our casual weirdness amidst regular conversation never fails in reminding me that there is no point in taking life too seriously. You see, in that moment I realized everything I needed in life in order to be happy was very much still present. The happiness I believed I was losing was nothing more than a result of all the superficial brainwashing I had endured through life. For some reason I still can't shake that urge to swan dive into my pool though, haha!

     But seriously, I still had love and lots of it. Right then and there I made up my mind that I would leave all my negative energy in 2016 and that 2017 was to be a fresh start. Clichรฉ? Perhaps, but for me, that shit worked. I shifted my focus and perspective on what I still had rather than what I didn't. The truth is I didn't have to be alive for my sisters wedding last August but I was. I need to treasure things like that and be humble. Annoying FT 6AM wake up calls from my best friend, learning to fly drones with my uncle, Skype tutor sessions with my niece, watching my nephew laugh while bouncing like a wild man on his trampoline, cracking up on the way to therapy with my brother, trips to the barber with Deano, cheesy episodes of Vanderpump Rules, Aldentediva dishes, ALL of it and so much more. I also started a new therapy program back at my safe haven, Helen Hayes Hospital, which gave me the physical hope I so desperately needed. 

     I meditate regularly now and make time to channel my emotions through creative outlets. I literally just made up my mind that I had come too far to let life get the best of me. I had been down this road before and I'm pretty sure my navigation will need to recalculate it's route once again in the future. I'm human. I need to go through my process. However, as I've always said the most important part of falling is finding the strength to get back up, no matter how long you've been on the ground.

     Listen to me. Life is going to give you a run for your money! Whatever plans you you think you have there will come a time when you'll hear the devil laughing at them too. No road is paved to be perfect. And he'll be looking at you with the same question he had for me, "had enough yet???" I am a living testimony that you can pull yourself up off the ground and laugh right back at that asshole and say, "Not today...Not EVER!" ๐Ÿ–•๐Ÿฝ

1 Man, 3 Hearts, and STILL ALIVE!