You Are Not Alone!

It’s hard for most of us to wake up in 2020 and not have something to worry about. The current world we live in is a chaotic and unpredictable one; dominated by social media, forced opinions, incessant filtering, an abundance of “fake news,” constant sensory overload, and an unlimited all access pass into Pandora’s box. Unfortunately, I do not think that any of us are ever fully prepared for how challenging life can get. Just recently in fact, the entire world as we once knew it was forever changed in a matter of days—leaving so many of us feeling anxious and on edge. On the surface, it would appear as though most people have everything under control, going about life as usual. We look around and can easily start to feel very isolated in our issues, and even times envious of others due to the façade that’s built up all around us. Everyone’s “mask” is a seemingly happy one, when in fact, so many of us are suffering in silence behind it, trying our very best just to hold it all together. You really never know when something will potentially come along to shatter reality as you know it. Life has an interesting sense of humor, but the important thing to remember is that so many of us are in this together!

Above all it is so important not to live in insolation, but rather to recognize that everyone has things dealing with, and that none of us are immune to life’s obstacles. You will get nowhere fast, trying to fight your battles by yourself. We all have things going on in our lives, we all have 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. I promise you there is no need to be embarrassed of your issues, because guaranteed there is someone out there who knows the depths of the pain which you feel. Life has a way of doing its best to keep us on our toes, the important thing however, is not to lose your balance! As the years go by, we are all met with our own personal challenges of varying degree. Things happen. Existence is no fairytale! Everybody faces struggle of some kind at one point or another. Some of us are just better equipped to deal (or hide it), than others. Ultimately, getting by is difficult, and getting past the ugly can be so overwhelming. But in coming together and being open about your hardships, you will find your journey to be much more manageable.

I want you to know that you are not alone! Over the course of my life, I’ve been scared, I’ve been let down, I’ve been betrayed, I’ve been confused, I’ve been lost, and I’ve been hopeless. I’ve been in pain, I’ve been hurt, I’ve been depressed, and I’ve been absolutely derailed. Ive been “beaten,” broken down, and 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.” I have managed to conquer numerous surgeries, drug addiction, sexuality issues, anxiety, depression, and so much more. Every hurdle I mange to overcome seems to be met by another, anxiously awaiting its turn to attack.

Growing up, I did my best to hide all things I was going through. I failed to communicate my hardships, and that was a very scary and lonely space to be in. It didn’t have to be that way. I have since learned that it is the support of those around me that has always been the main source of strength to get me through. I have learned to be more open about what I’m going through because there is so much to learn from the experiences of others! If only I had known then, that I was not the only one dealing with my perceived issues. I believe coping would have been much easier for me had I not been so secretive. As I have said in previous posts, there is great power in sharing. I now know definitively that I am not alone in my feelings. Almost everything that I have been through, someone, somewhere can relate. Strangely, there is peace in knowing that. While I never wish my pain on anyone else, having someone to relate to is incredibly comforting. Last night, I had such a refreshing conversation with a young woman fighting her own battle with MFM (the disease which I currently live with). It felt so great to have someone really and truly understand this battle. Sharing our fears and frustrations left me feeling not only relieved, but secure in knowing that we are strangely in this fight together. I was happy to exchange advice as well as words of encouragement. It felt good to lean on someone else who truly “ gets it”. The truth is, people can try to empathize all they want, but you never really understand unless you live it. This can be applied to many things. Better than any therapy session, I left the conversation feeling so much lighter and motivated!

As human beings, we are constantly looking to one another for any sign of hope that we can somehow overcome. Seeking someone who has “been through it,” themselves and can show us that it doesn’t have to be that way. Someone whom you can look to in order to find reasons to smile through the pain. Hence where the word inspiration is cultivated. This is not to say that people must live in our shoes in order to be of support. Sometimes even just a listening ear can be so helpful. Even just one person can make all the difference on a bad day. Venting to someone is everything! Whether it be family, a friend, your therapist, or even a complete stranger.

The number one reason behind sharing my story was to help others who may be going through tough times as well, and to let them know that they aren’t alone in their struggles. My hope is that in reading my book, “1 Man, 3 Hearts, 9 Lives,” you can see the light 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, and I am not the only one. I can show you that somewhere in there, life is still worth living, life is still worth appreciating. You just 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 tough times. As also 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 has been taken away from me. I am grateful to still be alive and to be surrounded by people who love and support me. I am still working however, to find true happiness within myself, which is a mission I can’t do alone. 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 of how special I am everyday. And because of that, I AM NOT ALONE, EVER!

NJ 5K Transplant Walk!

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 else is going through and how much that can help. Even just a simple head nod could be a reminder that “Hey, I see you, and you are NOT ALONE,” and if anything “I’ve got you.” Talk to people! Share your pain! Lean on your loved ones! Join support groups! Communicate!!! So many of my friends and family make me feel safe when there are 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 there are certain things that make life worth loving and enjoying! Ultimately in a world of 7.5 billion people, there really is no reason to ever feel alone!

If even ONE life is affected positively in knowing they have me on their side after reading my book, then I have certainly done my job. 💙💙💙

I’ve got your back!
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10 Years Sober! 💙

“I wish I loved myself enough, not to slowly poison and kill myself through addiction!”

Flushing my last Roxycette down the toilet!

Every year as my birthday approaches, I can’t help but reminisce about the events of July 12, 2010. As vividly discussed in my memoir, 1 Man, 3 Hearts, 9 Lives, that was the day on which I overdosed in my Miami condo. Unable to talk, see, or even walk straight when I shot up in bed at 5AM—it was a true Act of God that I even awoke from such a deep narcotic sleep. No matter what, I still can’t shake the daunting feeling of just how close I came to dying that night. I always think about how lucky I was to wake up, because for so many, that unfortunately isn’t the case. I think about just how sad and depressed I was in order to get to such a destructive state in the first place. I think about the devastation I caused my family and friends, inflicting such unnecessary pain on those who had to watch me suffer through my addiction. That is no way for anyone to live, and I vow never to put my loved ones through that again!

Today marks ten years sober from my abusing prescription pain meds! To say that I am grateful to have made it out of such a dark phase of my life is a huge understatement, because again, so many never do. I am so incredibly proud of myself for reaching such an important milestone. Especially given my current state, and the countless surgeries which I have undergone since being clean. I have come so far, and I have achieved so much in the last ten years of my life…and to think, I was so close to losing everything, all for chasing a quick and temporary sensation of false happiness.

July 14, 2010: I was placed in a medically induced coma following a pain pill overdose. My sister took this photo of me, as a means to show me (should I ever wake up) exactly what I had put my family through, and to remind me never to go back to that place ever again. It worked!

I got my first taste of morphine at the age of six. At the age of seventeen, I was swallowing two Percocet every four hours, just to get through the recovery of my first heart transplant. At the age of twenty-one, I was hooked up to a PCP pump and spent eight months completely doped up awaiting a second heart transplant. When my mother expressed concern, she was told, “there is nothing wrong with a little euphoria!” At the age of twenty-two, I was told by a resident doc, “there’s plenty more where that came from,” as he pumped me full of dilaudid as I awaited a cholecystectomy. Two and a half years later, it was Vicodin that I was prescribed to get through the recovery of my kidney transplant. I finally took the plunge and snorted my first pain pill when I was twenty-six, with a group of so-called “friends,” and it was all downhill from there. Although it’s hard to pinpoint exactly when my addiction began, I can say for certain that after I graduated to crushing and snorting pills through dirty bills, I had completely lost all will power and self control. I had no idea that such a small amount of white powder had the potential to corrupt and vandalize my entire life the way that it did. I didn’t even entirely understand what addiction was, before finding myself so far gone that it was near impossible to dig myself out of that hole which I had buried myself in. I never saw it coming. This is precisely why we must educate our youth on the dangers of addiction. It all happened so fast, and before I knew it, I could no longer recognize the reflection that I saw in the mirror. Who had I become?!

All morality is cast aside when dealing with addiction. It is a craving unlike any other, and it is never fully satisfied. The lengths one will go to get high are quite unimaginable. You find yourself doing things you never once thought you were capable of doing. Fortunately, I was making enough money at the time of my abuse, that I never had to resort to things like stealing or prostitution. Nonetheless, I was still ashamed of my actions. As the months went by, I found that I was no longer myself—dope nodding at family functions, barely able to hold a conversation. Behaving in ways that were so uncharacteristic of my personality. It’s almost as if the real me was replaced by some sort of demonic spirit.

I personally do not consider my addiction to have started off as a disease. I did not have an addictive personality, nor did these tendencies manifest during my early childhood and teenage years despite my consistent hospitalizations. But eventually, it all caught up with me. Again, my addiction was solely iatrogenic in its early stages, an inadvertent result of my treatment . I must say that in most cases, this was done with every intention of keeping me comfortable while fighting for my life. Now that I currently live with the knowledge of what it feels like to get high, it has been a constant struggle to avoid these substances. However, due to the sensitivity of my illness, I have come to realize that engaging in such activity would be about as useful as swallowing a bottle of rat poison. I love my life, I love myself, and therefore have no intention of directly compromising any of that ever again. I have already wasted too much time living in a hazy medicated fog. At this stage of my life, I have grown to know and respect my body enough to understand its limitations.

I can honestly look back and tell you exactly what the problems were. I am able to self-reflect, and tell you where I went wrong. I had no real self worth. I was so depressed and I didn’t even know it at the time. Therapy was not something my parents or caregivers had ever offered as a solution. I had no healthy outlets with which to process my many traumas and dark emotions. I was therefore left to battle my vices on my own, often times using various substances to numb my internal pain. I was lost in a sea of desperation, with no map to make my way out. My cardiologist was among the first to address my possible substance abuse on more than one occasion and stressed the danger in engaging in such behavior. I did my best to deny my activity; however, she knew something was off.

Denial, secrecy, and sensitivity were some of the main issues that that had a grave effect on me. All these years of suppressing part of my sexuality really took a toll on me. The drugs in a sense seemed to allow me the power not to worry about what others thought of me. I felt invisible in a sense, while ironically being the topic of many conversations. Alongside that was the fact that deep issues were never confronted or talked about in my family. My parents were going through an awful separation, and I started to feel as though I had nothing left to live for. Despite my parents doing everything to shield us from the destruction of their marriage, this still had a tremendous affect on me. Information was withheld in an effort to preserve our innocence, yet only to lead to its very destruction. I just wish I felt comfortable enough to voice to them, or anyone for that matter, just how much I was hurting inside. Instead, I turned to the very medicine used to subdue my physical pain, hoping it would do the same for my emotional pain as well. In reality, this only amplified my problems making things much worse!

Today I turn thirty-seven, thirty years longer than what doctors sat down and predicted to my parents. I’m grateful to everyone around me that said enough, and pushed me to get the help I so desperately needed. Even now, as I undergo countless hospitalizations and procedures I have my dear sister (as one example) to keep me in check when represcribed any kind of pain meds. Sometimes I get annoyed when she brings it up, and that’s always my first sign that I could be headed right back to that dangerous place, and I instantly become so grateful for her tough love. Eventually she stopped giving into my dramatic defensive reactions because her interest in my well-being outweighs all of that.

“Love yourself enough to surround yourself with people who contribute to your overall well-being and betterment!”

Ten years sober equates to ten years of clarity. Ten years of memories, that I would have never otherwise have had the chance to experience. Ten years to see my siblings get married, and actually be PRESENT for the birth of my nieces and nephews. Ten years of incredible moments and friendship. Ten years of laughter, sadness, and everything in between. Ten years of feeling emotions rather than numbing myself to them. Ten years of being ALIVE! I have lost a total of eight, yes eight, dear friends of mine to overdose in the last year alone. To be completely honest, I’m not exactly sure what is scarier, kneeling in front of the casket of one of my closest friends, or knowing full well that, that could have been me.

I know some of you reading this may still be in that dark place. And let me be first to say that I know how hard the fight is. Only a true addict knows the horrors of living with an addiction. I know that so many of you don’t want to live that way, but you have no idea how to even begin to get help. There are resources all around you, you just have to be open to it. I promise you that it is not worth living as a complete shell of yourself, your brain hollow, only with thoughts of when you will get your next high. Always convincing yourself to put off getting help. There is no need to like or comment should you be someone in that very position. All I ask is that you look at me as an example that your life doesn’t have to continue on this way. I couldn’t see it for myself when I was in it, but I can promise that finally getting help was the best decision I ever made, not just for myself but for all my loved ones around me. Addiction doesn’t simply affect the addict, it also affects everyone attached to them as well. I know it’s so hard, but maybe it’s time to take that step and change things. Do it for your spouse, do it for your sibling, do it for your child, but above all do it for YOURSELF! At the very least you owe yourself that chance! Again. It’s not easy, I recognize that. All I know is I can’t bare to bury one more friend from addiction! Take the step, ask for help…because you can’t do it alone! Don’t wait, get help today! It only takes one day to be able to live the rest of your life!

10 years sober!

💙💙💙

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F.L.Y: First Love Yourself!

Full Audio Version:
Narrated by Christophe Lafontant

Do you love yourself? And by that, I mean do you really, truly, and unconditionally love yourself…every inch, every flaw, and every single last trait that makes you, you? Are you able to walk into a room with your head held high, and whole-heartedly believe it? Do you take the time to think about all that you have overcome in life, and the fact that you’ve made it this far? That, in and of itself is a huge accomplishment. Life is hard! Therefore, you deserve all the credit in the world, for simply making it through each day.

Do you remind yourself on a consistent basis of just how amazing & badass you are? If not, do you surround yourself with people who do?! Because you should! You should be totally and utterly, head over heels in love with who you are! And I’m not just referring to the superficial you. True self-love is far more than just skin deep. Looking in the mirror and liking what you see is one thing, but loving the reflection of your soul is another. Take a moment and think about that! Because if you can’t fully embrace and love yourself now, it is so important for you to work towards getting there! Once you are truly in love with yourself, all the right things will begin to fall into place. No longer will you be accepting of those things which are not beneficial to you, instead you will start to allow yourself to live a life that is immensely freeing!

Ultimately, I believe we could all use some improvement in this area. We could all love ourselves a little more. Even for those who are full of confidence, everyone battles their own insecurities deep down inside! I for one, know that I appear way more confident than I actually am. Most people who know me, would classify me as the confident type, and to a degree, I am. But I also know that sometimes I am merely hiding behind that impression. Constantly comparing myself to others and wanting to be something I’m not. I’ve always been scared of appearing weak, and therefore for a long time hid my vulnerability. I never wanted people to know what exactly I was really going through. Until eventually realizing that there is, in fact great power in embracing your shortcomings. It took several decades for me to finally get over so many of my insecurities. And even still to this day, I have so much work to do towards genuinely loving myself as a handicapped man. It’s a process, but I’m getting there…slowly.

“My head is too big for my body!”

“I hate my voice!”

“My arms and legs are too skinny!”

“I wish I had clear skin!”

“My nose is too wide!”

“My hair isn’t curly enough!”

“I wish my eyes were lighter!”

“Why do I have to be gay?”

“I look sick all the time!”

“I don’t want to ‘look disabled!’”

“People must be staring because I look weird!”

In the end, we are all but merely a collection of imperfect beings, focusing on those imperfections, while living in an imperfect world, all sharing the common goal of spiritual growth and evolution. Whether you know it or not, this is a vital aspect of life, and it starts with the greatest love of all—the love of oneself. Spiritual growth is a gift we give to ourselves. But you can’t grow, if you don’t love yourself to begin with. And sometimes we even fail to realize just how poorly we treat ourselves. If someone asked me that very question in my years growing up, my immediate answer would’ve been, “yes, of course!” But it’s not something I ever took the time to really think about, until recently. Being older now, I am able to be more introspective and take an honest look back, and ask myself, “did I really love myself?!”

Did I love myself enough to live my life in a way that wasn’t dependent on what others thought? Did I love myself enough not to spend hours in the mirror picking myself apart? Did I love myself enough to stand up for myself and walk away from toxic situations? Did I love myself enough to not only know that I deserve better, but to give myself better? Did I love myself enough to eat healthy and exercise regularly? Did I love myself enough to take care of my first transplanted heart? Did I love myself enough to avoid slowly poisoning and killing myself through addiction? Did I love myself enough to make necessary, difficult, drastic changes for a better life?

So much of my existence has been spent hiding and trying to change so many of the interesting aspects that make me unique. For so long, I muted the brightest aspects of my personality and did my best to blend in with the shadows. I had no idea how incredible I was. Living that way is so sad! Being different is actually quite interesting! You have to work with what you got! I just wish it didn’t take such a debilitating illness to help me draw that conclusion. For example, I should have learned to love certain parts of my body before losing them. I used to despise how thin I am. Now I’d give anything just to move my limbs the way I used to. I also really wish that I learned to live life for myself much earlier on and to do what makes me happy. Sometimes I imagine how different life would have been if that were the case. Instead, I never took care of myself the way I deserved to be taken care of. I wish I had been comfortable enough to live my life how I wanted to, before so much of my independence was stripped from me. I deserved better! In that neglectful process, I caused myself so much unnecessary pain, heartache, and damage. So many years thrown away living a lie—so much fear of being my true authentic self. I am telling you this, because this shouldn’t be the case for you. If I could go back and do it all over differently, I would. I am man enough to admit that there are a things in my life that I suffer from, that I caused myself. However, had I learned to respect myself more, so many of those hardships could have been averted. As I grow older I refuse to ever fall back into a pattern of self hate ever again.

Self love is a process and takes lots of hard work. We all make mistakes on our individual journeys. Therefore, in that process, it is so important to incorporate unconditional self love as well. Unconditional self love is the ability to first recognize, and then forgive yourself for your past mistakes. We are all human. However, in that same regard it also means doing your best not to repeat those mistakes. Making mistakes is acceptable, repeating them is not. Loving yourself is to know that repeating those mistakes would only be detrimental to your overall well-being, only causing you more suffering and pain. Instead try to:

Love yourself enough to put yourself first!

Love yourself enough to walk away from people and situations that fail to contribute to your overall well-being and betterment: that includes family!

Love yourself enough to treat your body well!

Love yourself enough to be honest with yourself!

Love yourself enough to allow yourself time to heal!

Love yourself enough to enjoy your own company!

Love yourself enough not to depend on ANYONE for your own happiness!

Love yourself enough to know that you deserve happiness in the first place!

Love yourself enough to learn what sets your soul on fire. Get to know yourself on a deep level, and do all the things that excite you!

Love yourself enough to live your life unapologetically just the way you are!

Ive said this before, it’s so important to give yourself regular pep talks! Be your own motivational coach! Amp yourself up! It’s okay to remind yourself that you’re the shit! Don’t be shy! I can promise you that I am my biggest cheerleader, and I give myself regular pep talks several times a day. Sometimes it’s what I need to pull myself out of a funk. I consistently remind myself of my accomplishments and of how great I am. I remind myself of everything I’ve overcome, and I find strength in that. I use my regrets from the past to fuel my love for myself in the present. If you don’t think you deserve the best, why should anyone else? It may sound cliché, and that’s because it’s true!

– Margaret Paul, Ph. D.

I am turning thirty-seven years old next week. That is something which I do not take for granted. I love my birthday, primarily because it is a reminder to reflect on all my many blessings. Turning another year older is not guaranteed to anyone. As perfectly stated by my sister-in-law, “getting older is a privilege.” Just the other day, I caught myself staring at my shirtless reflection in the mirror, a proud smile slowly stretched across my face, as I processed the fact that, “I’m still alive…thirty years later, and I’m still f*cking alive!” I slowly used my left arm to bring my right hand up to touch the three-inch scar just below my left shoulder bone. Suddenly, I was reminded that at the age of six my parents nearly lost me. I remember how much that area used to hurt and itch when I had my pacemaker. I remember being so embarrassed of that scar, and now I see it as a proud symbol of the start of my legacy! The eight-inch scar running down the center of my rib cage reminding me that ages seventeen, and twenty-one weren’t written in stone for me either. My chest was carved open, and my entire heart was replaced, twice. I reached down and slightly pulled down the front of my boxer briefs to reveal the five-inch scar along my left groin that reminds me that having the sudden urge to pee in the most random of places is never something to complain about. Dialysis isn’t easy, but it’s keeping me alive. The gash marks on the side of my left rib cage and two healed holes above my stomach, remind me of countless chest tubes that drained blood after each and every surgery. The site where my gall bladder was taken out, reminds me that many people still walk around with a drainage bag strapped to their chest. The hole in my neck, my tracheotomy, my head turning “oddity”, reminds me that not only will I endure and adapt to anything as a means to survive, I’ll do it with style! “If they’re gonna stare, give em something to stare at!” It suddenly strikes me how uniquely interesting my body has become. Who needs tattoos when you have so many warrior scars that tell your stories?

My “bad days” have come and gone, and I know there will be more to come in the future. Again, life is hard! But I love myself enough to know that it’s always worth pushing through. I am worth the fight. You are worth the fight! No life is worth ending! Let this be a reminder that you are wonderful, and that it’s never too late to make improvements. I love myself more now at thirty-six, with all my baggage, than I ever did before. However, be sure to know the difference between critique and criticism. Don’t let all the external and internal criticisms dim your light, because I can guarantee they are lying to you! However, remain humble enough to heed constructive critique when necessary. I am thankful for my past because it has taught how to be a better person. My entire perspective has changed as a result of all that I’ve been through. My own self awareness has granted me the wisdom to believe that I deserve to give myself the best of every situation. And in loving myself, I have gained the ability to better love others.

It wasn’t an easy process, and I couldn’t have done it alone. Which is why I stress surrounding yourself with good and positive energies. It is imperative to surround yourself with people who lift you up and make you better. It took some quality conversations with those closest to me and some deep inner strength to get my motivation back. When you receive a compliment don’t fight it, instead use it to help grow your self love. Reigniting my passion for myself has made me hopeful again. Years ago, I just wasn’t ready to accept or deal with my situation. Although I am still coping with my disability, that struggle has not come without a great deal of growth. I’ve learned to hold my head high because, “ain’t nobody doing it like me.” There’s only ONE me! It has humbled me, and made me less hard on myself. The same disease which weakens me physically has significantly empowered me emotionally.

“Please don’t kill yourself, I’m talking to you…”

I’ve trained my mind not to allow negativity to take over. I refocus my thoughts, or reach out to someone who can help me do so. There’s nothing worse than being alone with an anxious mind. When I hit road blocks, I’ve learned to “run through that shit over and over and over again”. I have to be relentless. I have become my own best friend, and no longer need to rely on anyone else to enjoy my life. I have put in so much work, and as a result have also reaped the many benefits. I have come too far in my journey, which means to give in now would be so utterly disappointing. Quitting just isn’t an option for me. Simply put, I just love myself too damn much to ever give up on myself…and you should too!

You can be afraid of certain things in life, but never be afraid to F.L.Y!

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Hourglass!

I have come so close to death that it has taken me quite some time to finally shake the eerie feeling of her cold bony grip, tightly wrapped around my soul. As you know by now, I have been through pain, torture, and sheer misery on the deepest of physical and emotional levels. I’ve been tested in ways most could never imagine. I have been to hell several times, and have come back stronger with every trip. The devil no longer laughs in my face, but rather I laugh in his! Every single day is a challenge for me. Sometimes when I look back on the events of my life, it’s hard to believe that I’m the one who lived it. Nearly crippled by my anxiety, there were countless times I didn’t know how I would survive. I didn’t know how I would even manage to continue on. Yet here I stand (or sit rather)! I will never give the devil that satisfaction. The obstacles that I have faced have relentlessly put me through the ringer, challenging my spirit in every way imaginable. I was countlessly forced to re-evaluate the meaning of my life and everything in it. From it all, I’ve managed to take away two very valuable and important lessons: Perspective & Appreciation!

You see, so many of us have a habit of living our lives on autopilot. We do the same things day in and day out—time slowly passing us by. We stop living and are merely existing, Most of us aren’t even aware of when it happens, until it’s too late. We get caught up in our routine and other various distractions. We go through our daily regime taking so many people and things for granted. We get complacent and comfortable. The majority of our time is spent worrying, complaining, and our focus is on all the wrong things. We cancel plans without hesitation because decidedly, “there’s always a next time.” Until suddenly, life is forced to remind you of what’s important, only to never hear that person’s voice again. In an instant, everything gets turned upside down. I speak from experience as I kept putting off plans with a friend, only to lose her weeks later in a devastating jet ski accident. I neglected another friend’s calls all day thinking, “I’ll just get back to them,” only to hear they passed in the middle of the night. This isn’t a joke. It’s life!

The world as we once knew it has drastically changed without warning, and we weren’t at all prepared. Take this recent pandemic as an example, most never saw it coming, and those who did, weren’t prepared for the extent of just how bad things would get. Now we walk around in fear, going too long without seeing the people we care about. If only we realized just how good things were before they changed forever. I would give anything right now for one more family gathering at my brother’s house, the kids riding around on my lap in my wheelchair. “Time waits for no one.” Another reminder is that your parents won’t live forever. Suddenly the moment comes when you would do anything for that “annoying” phone call from your mom reminding you to eat, dress warm, or do things you’ve already done. Time is fleeting…the sand in our hourglass being very deceptive, falling at a much faster rate than appears. Those moments we take for granted and put off will soon be gone forever, never to return again. If only we could learn to seize those opportunities when we have the chance, we would be so much better off!

Me and my nephew!

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 knock some sense into people, and 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 breathe the fresh outdoor air to yearning for any air that wasn’t being artificially produced by a machine through a tube in my throat. I still remember what it feels to walk. I remember the feeling of my feet on the ground holding the weight of my body, allowing me the freedom to come and go as I please. I miss driving, I miss being able to bend down and pick things up, I miss washing my face in a sink, or simply standing and letting water run down over my head in the shower. I miss being strong enough to raise my arms and give my loved ones a hug. Trust me when I say, barely walking is better than not walking.

Perspective!

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! No more hiding. No more caring what others think. 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 now appreciate that my story is so unique in nature. I view being different as being memorable.

I cannot stress enough just how important it is to live your life, before the last grain of sand falls in your hourglass. Travel! See the world. There are so many cultures and places to explore. Living in a bubble is so boring! Don’t hold grudges. Holding hate in your heart is so unhealthy. The worst thing you can do is go to bed mad. Learn to forgive others, if not for them, then for your own peace of mind. Listen to people. You can learn a lot. Put your own ego aside, and be open to accepting new ideations. You never know when someone has something valuable or deep that they may want to share. Don’t be stubborn, you’re not always going to be right. You’d be very surprised how much you can grow from the right conversation.

If you feel like saying, “I love you” SAY IT! Be spontaneous, spoil your loved ones for no reason. You don’t have to wait for birthdays and holidays to do that. If you see something they’d like, why wait to let them know they are special?! Once again that is merely another societal constraint. Spoil yourself too. Self care is vital. You deserve to be pampered and taken care of, especially by yourself. 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. Energy vampires are real, and will suck the life out of you! Everyone in your life serves a purpose, but some friendships are seasonal. It’s okay to move on from things that no longer benefit you or contribute to your overall well-being. Your most important relationship should be the one with yourself. Learn to enjoy your own company. You should never be dependent on anyone for your happiness. It’s ok to be selfish from time to time. You should be the most important person to you! If you yourself are not ok, you will hardly be in a position to help anyone else you care about.

Live wisely, not 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. Regret is one of life’s many curses. 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. Worrying about things that have passed and beyond your control will only drive you crazy, Set goals for yourself. Take steps towards fulfilling those goals. Like i said in my previous entry, things worth having take work! 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. You’re fifteen one day, and fifty the next. And again, it takes work. It takes support, and encouragement. We are all forever works in progress. There is so much you can do in order to better yourself. And although you will never achieve total perfection, at the very least, YOU should be the one finding reasons to laugh everyday…not the devil!

1 Man, 3 Hearts, and STILL ALIVE!

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Outliving My Fears!

I have officially reached the point of quarantine in which there is no denying how much the whole thing is affecting me. I can no longer go on pretending that I have it all together, because quite frankly, I don’t. Constant waves of emotion, countless tears falling from my cheeks at random, followed by an overwhelming sense of loneliness and fear. I really thought that staying my ass put at home would be easy, but it isn’t. Managing my anxiety has gone from “day by day,” to “minute by minute,” as I go from being completely fine one instant, to completely crippled by panic, in a matter of seconds. I remember when this all started, I saw this an opportunity to take a break from the everyday chaos of life, and hopefully try to put some things in perspective. And yes, that happened too, but now I’m starting to lose it!

I was feeling very ambitious in the beginning, having such high expectations of all the various things I hoped to accomplish with this new abundance of free time. Having been extremely cautious, hygienically, for the last twenty years due to my immunosuppression, that aspect of things wasn’t very hard for me. Furthermore, having spent several months in hospital isolation confined to a bed in the past, I was confident that surely this was a challenge I could get through. No problem! I tried not to fight it, and rather I did my best to embrace the circumstances for what they were. I found creative ways to keep myself entertained, and made extra effort to remain socially distant, yet connected, to my loved ones. I promise you that I could not have survived this if not for my family and my best friends. Social media was booming, and people seemed to really be connecting on all the various platforms. And for the first time ever, there was no FOMO (fear of missing out), because the whole world was literally at a stand still, experiencing this pandemic together. Everybody was home and on lockdown. But about eight weeks in however, things started to change for me personally. I started to lose my motivation. I started to lose my drive. Worst of all, I started to become complacent in my laziness.

Occasional days of laying in bed doing absolutely nothing gradually became more and more frequent. My days started to blend together, making it very difficult to keep track of time during the week. My dialysis schedule being the one thing that remains fixed on Mondays, Wednesdays, and Fridays allowing me to still have some semblance of a routine. I have been on lockdown since Friday, March 6th. Three and a half months of occasional window visits from family and friends, zoom calls, social media banter, and only my personal aide Mishka, to keep me company. It is quite ironic how appreciative I’ve become of getting out of the house, even if it is to have my blood cleaned through a machine for four hours. Aside from these exciting weekly outings, every other day is pretty much consistently stagnant. I have quickly come to realize that actually living Groundhog Day the movie, proves to be not as exciting of an experience as I imagined it to be. I don’t have visitors inside my house, and only physically see my family occasionally, again through a glass window—my only other outside physical contact being with nurses and other patients. I am well aware that some people don’t even have that; however, that doesn’t make it any easier for me.

My brother with my two nephews!

I can feel the grip of sadness and depression tighten around my neck, making it near impossible to breathe, as the weeks quickly slip by. Reality starts to set in that my inactivity has only exacerbated my weakness leaving me in quite a precarious position. As a result, my body has grown incredibly frail from laying around in bed all this time. Everything hurts. Not being able to receive physical therapy for the last three months has been detrimental and has severely compromised my overall quality of life. I’ve begun to notice an inability to do certain things that I was still able to do before the shit hit the fan. For example, it has suddenly become so hard to even sit up in my wheelchair for extended periods of time, without pain searing down the right side of my neck and all the way down my spine. It has also become more difficult to stay off my ventilator for too long before getting an intense, pounding migraine.

To make matters worse, my mother was forced into an early retirement due to Covid-19, which was not something we planned for. This has put a major strain on the two of us financially. There are a lot of expenses that go into my care, and I can’t expect my mother to support me on her own forever! My only other source of income is my monthly SSI disability check (which isn’t much), and the occasional book sale. All of which I am extremely grateful for, however the truth remains that I have a lot of concern in regards to supporting myself financially in the future. In the end, it all becomes a vicious cycle. Laying in bed thinking about everything under the sun to get me anxious, meanwhile in doing so, I’m only getting weaker, which is one of the main reasons I’m anxious.

Text conversation venting to my sister.

If it’s one thing I’ve learned over the course of my life however, it’s the necessity to break myself out of these dangerous negative thought cycles when they occur. My sister was right, I need to take my own advice. I don’t even know what happened. No sooner than I finished writing my last entry about maintaining happiness, I found myself sinking into a quick sand of depression. It was almost as if I had given out all my positivity to the rest of the world leaving no reserve for myself. I must remember that life is not about the situations presented to you, but rather how you handle them. I’ve always handled things head on, and I’m not about to stop now. One of the first steps is acceptance. I have since accepted that the pandemic itself is far beyond my control. Whether a form of natural selection, or man made in a lab, the fact remains that this serious virus lives among us and is taking lives in the process. And unfortunately, my falling into the category of “high risk” while also having great concern for the livelihood of those around me, does not allow me the luxury to start cutting corners. It is what it is. That being said, now that I’ve accepted the reality of my circumstances, I can then move on to mitigate how this all affects me.

Self-awareness is just as important. I can’t stress enough how important it is to take a look inward from time to time, in order to better pin point the things you need to work through for yourself. Now that I am aware of the toll my forced isolation has taken on me, it is up to me to make a committed decision not to let its affects continue. I am the one who must make a conscious decision to alter my thinking and break out of this zombie like state. I am in charge of my own destiny! And so, over the last week I have forced myself to get out of bed, stretch, exercise, change my scenery, and be productive! I have also resumed physical therapy twice a week, and although I am still waiting to see results, just getting up and moving has been a huge mood booster and a game changer. I’ve started writing again, which has been majorly therapeutic, and could also potentially be an avenue for future income. But all these things do not come easily, instead they take the willingness to put in the necessary work. “Anything in life worth having, is worth working for!” And while I’ve managed to snap out of my funk for now, I know that in the upcoming months there will certainly be moments that I get down again. As I’ve said before, life is full of peaks and valleys. We just need to make sure we are equipped with the emotional tools we need to pull ourselves up and out of those deep, dark, valleys when we are in them!

This whole situation has brought me yet again another perspective on life. The world has come to a hault and there is a certain stillness that is so rare. I am appreciating the quiet. I know this is a terrifying time for many (in whatever facets you may be affected). And others think it’s all a big joke. Regardless of opinions however, the fact remains that this is something affecting us on a global scale, and so perhaps some self reflection is in order. That you just cannot deny. Instead, what can you learn from this? How can you be more prepared should something like this occur again in the future? Do you have a safety net in place? Are you going to be a nasty negative asshole? Or are you going to contribute to society somehow and help someone who may really be going through it right now?

I myself have reflected on the fact that despite my limitations I am actually a very active person, and that prior to this madness I have been fortunate enough to still enjoy many luxuries that are a privilege to have. I do a lot, and it’s pretty crazy. Not being able to see people whenever I want to has actually made me more aware of my relationships and more proactive in reaching out to relatives and friends that I have not heard from in too long. I check in on my loved ones and do my part to be involved. I am enjoying getting to know myself again—my quirks, my interests, my flaws, all of it. I am very self aware and working to rebuild my consciousness from the inside out. Maybe we all just needed a reality check and to be reminded of what really matters. However, in a way that really sinks in and sticks. Often times we read a quote that resonates with us or we hear a groundbreaking speech that shifts our mindset…but for how long really?! Perhaps we all needed a forced look at ourselves that we can’t just break free of or escape from. Life is forcing us all to take a deeper look right now so that hopefully when this all blows over the majority of us come out as better people on the other side.

I think the worst part this entire situation is the uncertainty and confusion of it all. No one knows definitively how the virus can even be contracted, or even how long this will last before we can go back to life as we once knew it, if ever! Some people are scared, while others could really care less. Who knows what to believe at this point. But again, my situation does not afford me the luxury to take that gamble. While I fully understand the need for others to reopen their businesses, support their families, “get on with life”, or simply exercise their right to freedom. I personally will most likely remain in solitary lockdown until Spring of 2021 when I’m told this shit is taken care of for good, or we get a vaccine…whichever comes first. I’m not about to be out here taking chances with life that I’ve worked so hard to preserve. In the meantime, I am realizing how imperative it is that I do everything in my power to maintain my physical, emotional, and mental health. At this point, I’m just trying to survive and get through this without putting myself at risk. I want to live to be able to write about it. People ask all the time if I’m scared. My answer to that is, I choose not to live in fear, but rather to do everything I can in order to outlive the fear which has been imposed upon me! Please be safe and use this extended time out as a way to be a better person! Don’t give into your fears either, outlive them! 💙💙💙

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Fleeting Moments!

I can’t help but think back on how nervous I was on the day that I spoke to the group of seventh and eighth grade boys at Lewis F. Cole Middle School. My stomach was in knots as the boys piled into the gymnasium; each of them staring over at me, their eyes wide with intrigue. I had no idea if I’d even be able to get them to pay attention to me, much less care about anything I had to say. At that particular moment, I wasn’t feeling so confident in my ability to connect with the group of young guys. Being given the opportunity to speak to such an impressionable group, was not something I took lightly, and I did not want to disappoint. Although here I was, really struggling with how I’d make myself relatable to them, let alone manage to have any kind of an impact on them.

And yet, despite all my conjured fears, once the presentation started, they made it so easy for me, giving me their complete undivided attention while listening so intently and with the utmost respect. Many of them asked questions at the end, and some even approached me afterwords to let me know how much I’d inspired them. Even now…years later, a few still message me for guidance. This most recent message in particular however, really left me thinking…

I can assure you that the irony of this situation is not lost on me, as I think about the fact that this young boy, a picture of perfect health is turning to me, asking about happiness. One would think that such a young child already holds the key to happiness. He shouldn’t need my help. However, this is a reminder to me that even with all my challenges, I still have the ability to inspire hope through sharing my story (no matter the age). Some days it’s easy for me to lose sight of that fact. In my mind, it should be easy for a boy his age to be happy. And yet, this just goes to show that no one is immune to sadness. In reality, it’s those who seem the happiest that’s are actually in danger of being the saddest. Incredibly wise beyond his years, this young man is able to recognize that happiness is not a constant, but rather a collection of beautiful fleeting moments interwoven together over the course of our lives amidst extreme hardship and despair. Clearly his young mind has discovered that not only are the tooth fairy, the Easter Bunny, and Santa Claus not real…but that instead racism, terrorism, war, famine, sickness, death, oppression, murder, crime, and poverty take their place. Discovering happiness (let alone sanity) in the middle of all of this, can be quite laborious.

Finding happiness in and of itself can be difficult. In some cases, people are even forced to find ways to create their own happiness. However, maintaining happiness is a skill that so many of us are desperate to master. Happiness, like a plant must be cultivated and nurtured. It takes hard work to be kept alive! But in doing so, obstacles may arise to try and block us from it. Every single day, I am bombarded with so many various reasons to be unhappy, which I must continually fight off. Anxious thoughts dart through my mind attempting to sink me deeper and deeper into a dark abyss of depression. “Staying happy,” has proven to be especially hard as of late, being cooped up at home with nothing to keep me company besides my troubled thoughts. I wish I could tell you that the brave and positive face you see on social media is a permanent one, when in fact most of my days are spent on a rollercoaster between highs and lows.

Life is made up of a series of peaks and valleys. Working through, and pulling yourself out of those valleys is the hardest part. Nobody’s story is perfect, nor is anyone always happy, despite how desperately they may try to make that seem. Happiness for some, is merely but an illusion that is often used to make others question their own. Some people just feel better knowing that others think they are happy, even if they really aren’t. Most people’s biggest fear is being found out that their “Facetuned” perfectly whitened smile is nothing but a façade.

As I’ve mentioned before, even the slightest negative thought can set off a chain reaction in the mind, and before you know it, you are engulfed by a sea of negativity. The key is to stop this train of thought dead in its tracks before becoming too overwhelmed. For example, there are certain realities in my life that I am helpless to. It doesn’t make any sense to worry about things that I can’t change. Yes, I’m disabled. Yes, I need 24/7 assistance to survive. Yes, I’m on dialysis. Yes, I need a ventilator to breathe. Yes, my parents are divorced and on terrible terms. Yes, I’ve been cut off from my niece and nephew by my older brother for reasons beyond my control. Yes, I’ve lost best friends to overdose and others to tragic accidents. Yes, I still struggle every day with accepting the cards that I’ve been dealt. Yes, I am currently living alone in the middle of a global pandemic, seeing family and friends through a glass window while simultaneously battling against the injustices of racism. Despite how high the wall of obstacles may be stacked against me, I know that it is detrimental to my health to remain resilient and continue to fight for my happiness. The alternative could very well be deadly. And simply put, wallowing in my own self pity would just be too easy. True warriors don’t succumb to weakness, they embrace it and use it to make them stronger!

Please know however, that is perfectly normal to feel sad, upset, overwhelmed, and frustrated…especially with everything going on in the world right now. You are entitled to your feelings. You have to let yourself feel, in order to learn, grow, and heal. We all go through our own processes at different rates, therefore it is most important not to compare yourself to others. In which case. you may find it beneficial to take a break from social media every now and again. The important thing is to be able to pick yourself back up when you need to! Instead, talk to yourself every single day and remind yourself that your spirit is in control. Remind yourself that you have faced difficult situations before, and you have managed to overcome them. Remind yourself of just how amazing you are and BELIEVE IT! Remind yourself that YOU’VE GOT THIS!

The ingredients for happiness are often right in front of our faces. We are just too clouded by negativity and judgment to see them. Over time, we realize that the things we once thought were so important aren’t, while simultaneously realizing that everything that is important, we take for granted. Time heals all, but also waits for no one. We spend a lifetime searching for love, when the greatest love of all, is the love of ourselves! We work hard everyday to acquire things that we can’t take with us to the afterlife. We idolize possessions worth monetary gain, but that really have no true value. We only express extreme love and emotion on birthdays, holidays, milestones, and at funerals. And yet death can happen to any of us, any day, causing us to miss the opportunity to tell someone how much they really mean to us!

My happiness lies in the lives of the important people around me. I believe it so necessary to nurture your relationships. Really put in the work! It’s a two way street and should never be one-sided. Make a conscious effort to operate on an equal playing field and to give as much love as you receive. Being made to feel like a priority feels incredible. Therefore; make the people you love, feel like they are a priority in your life. However. in that same regard, don’t be afraid to let go of people who don’t make you feel like you are a priority in theirs. You don’t have to hate them, but you must love yourself enough to know that you’re worth more. Communicate, but remember actions always speak louder than words.

Stop focusing on the superficial stuff. Enjoy moments, not things. Create experiences. Be spontaneous. Make memories. Realize how blessed you are to breathe without a ventilator, eat food through your mouth and not through a tube, release toxins without being hooked up to a machine, walk/run without the use of a wheelchair. Every day without so much as a cold, is a good day! Health is the ultimate wealth! Remember that, “nothing lasts forever.” Whatever it is that may be plaguing you will come to pass. Every day that you push forward, is another day closer to your goal.

Dream big. Reach for the stars. Fear of failing should not outweigh the fear of having never tried at all. Take a hold of your life, and make the most out of it! Stop living for others. Live for yourself! Take care of your body. Love the skin you’re in. Look in the mirror daily and tell yourself that you are unique, special, beautiful, and absolutely worth it! Be in love with YOURSELF! This energy is contagious and therefore, love from others and ultimately happiness will flow naturally. No one can make you feel better than you can make yourself feel!

Tell the people you care about how much they mean to you. Just because. Say I LOVE YOU MORE! I’m telling you, if you wait…it will be too late one day. Stop waiting for an excuse to show someone you care. Believe me, it can make all the difference in someone’s life. If you’re thinking about someone, tell them. If you have feelings for someone, tell them. Don’t always assume people know what you’re thinking, because I can almost guarantee that they don’t.

“The greatest thing one can do is give a genuine smile. For behind every smile lies the potential to spread happiness.” – Aiden Park

So yes, maintaining happiness is hard, but it is also possible. Every now and again you will fall into a really good emotional space. Treasure that, and hold on to it. Engage in activities that light your soul on fire, eliminating the things that don’t. Find peace within yourself. Aim to be in a place of acceptance, and most of all don’t be so hard on yourself. Life is challenging enough as it is, almost daily, for ALL OF US, and therefore it is important to embrace those precious happy fleeting moments whenever they occur!

Life is funny…so if you do nothing else in the end, at least make sure to laugh! 💙💙💙

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Finally Owning My Blackness (Part 2)

I was about twelve years-old when I first started chemically relaxing (aka damaging) my hair. Before that, a small fortune was spent on every type of gel, spray, and hair product imaginable in an attempt to tame my afro—everyday plastering on copious amounts, trying my best to slick back my hair just like all the other boys I knew. Despite all my efforts trying to achieve an “LA Look,” I still never managed to look like the other boys. In no way did this hinder my attempts to do so however. Please for a moment just imagine me at age seven, walking into a barbershop with my tiny fro, asking for a “mushroom cut,” only to come out looking like a character from Super Mario Bros. I swear, I’ve always been so extra! The truth is though, I just didn’t want to have a “brillo pad” anymore. I didn’t think being different was cool, and I didn’t even know how to manage or style it. It wasn’t until I was fifteen or so, that my older brother took me to a barbershop that knew how to cut people with my type of hair. In the meantime, I wanted the soft, flowing, wavy, “good hair” too. The kind of hair that would blow in the wind, or that I could shake off when I got out of the shower. I was jealous and couldn’t understand why I had to be so different.

It was on one Sunday afternoon while sitting in our kitchen watching my mom “relax” my sister’s hair for the first time, that I made up my mind that I wanted to do the same for myself. I was fascinated by the transformation process, and after seeing the instant results and change in texture, I was obsessed with the idea of getting my hair straightened too. It took quite a bit of convincing, but eventually I was finally able to get my mom to agree. I was so excited for my new luscious, “easy breezy” hairdo, that I could hardly wait to show off in school and gloat to my classmates, almost as if to say, “Look! My Blackness is gone!”

As mentioned in my previous entry, I grew up in a bubble of sorts—the “happy valley.” And I can honestly say that yes, I grew up very happy! The only problem being that I wasn’t completely sure of who I was. I wasn’t comfortable in my own skin, and I didn’t know exactly where I fit in. This was therefore the perfect environment in which my identity crisis could thrive. The only thing I could think to do was take notes from the limited pool of people around me, and implement the examples of what I saw into my own lifestyle. I began wearing colored contacts (green & blue to be exact), listening to different music, dressing very conservatively and always in a fresh button down. I even went so far as to put natural sun highlighter spray in my hair one summer. Everyone had highlights, so I thought I needed them too. Unfortunately for me, that experiment went horribly wrong, turning my hair into a rusted copper color instead of a nice golden blonde. Even still, I rocked the hell out of it, because in my mind I had done everything necessary in order to blend in, and I looked good!

It was not until college that I was really exposed to different cultures from all over the world, including my own. It was there that I really learned that it was okay to be me. Columbia University was full of diversity. Being in the heart of New York City, I experienced so many new perspectives on life. In fact, I’d had no idea the extent of my naïveté, until I was finally exposed to the real world outside my bubble, even offending some in my process. Looking back however, even the offenses greatly contributed to my growth. Again, my hometown was so small, and I grew up extremely sheltered. I really didn’t know any better. It was mesmerizing to be in a big city surrounded by so many different lifestyles and backgrounds. As a point to myself, I immediately joined “the Black (W)hole,” which was a small off-campus based black student organization that was dedicated to open-minded and abstract inter-racial thinking. Whenever we got together, serious deep conversations always led to non-stop hysterical laughter. It was in this group that I finally met more people like me, which was so refreshing. I also met more women like my mother and sister. Strong-minded, intelligent, independent, achieving, powerful black women. I learned that life sometimes involves going against the grain every now and again, and that it is so important to stand up for yourself and what you believe in. I learned about all different kinds of religious and political beliefs that I’d never been exposed to growing up. I learned more about my own culture as well, and in that realizing just how little I knew about black history. I didn’t feel good about that, and made a it a point to change that!

People were quick to challenge my thinking and my belief systems, and they weren’t shy in doing so. Through deep intellectual conversations and debates, I learned that my ways of thinking were not the only ones to exist—the world in fact did not revolve around me as my pampered lifestyle had lead me to believe. In that same regard, this was the first time that I had really ever heard anyone be so openly accepting of alternative lifestyles. But people sure as hell weren’t afraid to tell me when I sounded ignorant or misinformed either. I felt honored to be among so many intelligent people from all around the globe, and to be given the chance to expand my own mind in the process of getting to know all of them. Nobody seemed to be hiding who they were. With that seemed to come so much honor and pride. To me, this was incredibly inspiring to see. I wanted so badly to be unapologetically black. So much so, that I then went to the complete extreme of feeling this diehard need to prove my ethnicity. Within weeks of being at school, I began twisting and braiding my hair. Caribbean flags and decals were hung everywhere. I joined several more black student organizations and associations. I started speaking more Creole with my new Haitian friends, which prior to that I never spoke outside of my home. I attended several Caribbean parties and festivals, and I’m telling you the music just hit my soul different. It felt amazing to finally embrace parts of my life that I had previously worked so hard to deny. Little did I know however, of the affects that bringing this newfound ethnicity back to my hometown would have on me.

For the first time in my life, I began experiencing moments of feeling like a complete stranger back in my own hometown. It quickly became evident that the underlying judgement people spoke of, in fact always existed. I was just never aware of where it was, until I finally let my blackness show. Even my parents, who remained very supportive of my internal crisis, I know were also patiently waiting for the “phase” to end. Which was all very strange considering this was the first time that I felt as if I was learning to embrace the roots of my true authentic self. I had grown a backbone and finally wasn’t hiding anymore. And the reality is that some people really didn’t like what they saw! The long stares and dirty looks were enough to make anyone feel uncomfortable. Imagine being repeatedly told to cut off your hair because it would look much cleaner that way. Imagine hearing racial slurs casually thrown around in your presence because, “you’re not really black black. At least not like the dirty ghetto kind.” Imagine being pulled over and harassed by the cops just minutes away from where you live. Imagine a competitive game of beer pong turning into my brother and our close friend being called half-n*ggers just because they won. Imagine having to meet my cousin down the street for my whole life, to explain to police that “what he’s doing here is visiting me,” just because his complexion is a few shades darker than mine. Imagine one of your best friends turning to you at a pool party and asking, “what the f*ck is that n*gger doing here?!” all while staring at your cousin. Furthermore, I love how people are so quick to point the racist finger at white people, when that’s so far from true. It was an Indian gentleman who followed me around the aisles of a store in my town for over 10 years. It was an Asian gentleman who asked me, “you have money?” as soon I set foot in his store. It was the Latino who shouted to my friends and I, “we don’t want you here, you go!” Racism exists everywhere!

I will tell you this, having a progressively deteriorating muscle disorder will do a lot of things to a person. For me personally, it has pushed me into a place of self-acceptance. I’m tired of making excuses and apologizing for who I am. And I’m tired of not being able to have the strength to talk about myself with conviction. And yet, when you’re left laying half paralyzed in a bed, letting sweet dreams of regret consume you as you think of all the healthier days that you sacrificed, instead of living the shit out of your best life…you quickly start to realize you just can’t give a f*ck what anyone thinks anymore.

I can’t even lie to you. A lot of these emotions came up in light of recent events. Watching the gruesome video of George Floyd take his last breaths as four police officers took his life, simply flipped a switch in me. No more! And yet, I feel as though I have learned and grown so much, in his honor. I have learned not to be fearful in using my voice and my platform to stand up for what I believe to be right. I have learned not to be scared to publicly embrace my ethnicity, and therefore not to hesitate when asked, “what are you?!” but rather to reply with enthusiasm, “I am black!” I have also learned to pause and listen. It’s so easy to jump to conclusions and point blame without stopping to understand others first. Yes, racism exists and yes it is very much deep rooted; this is not a problem that can be fixed overnight! It is important to note that there are also a number of people who just need to be educated because, like I was at one point, they simply don’t know any better. I understand and feel the pain, the sadness, the anger, the rage, and the exhaustion. I’d be lying if I said that if one of my family members was killed so brutally, that I wouldn’t want to burn down every city too. “I’m not saying it’s right, I’m saying that I understand.”

Changes must be made! But we can only achieve that if we come together and operate cohesively. I do believe that already today, we are better off than yesterday because people are finally paying attention. But don’t fall into the trap of embracing hate and negativity, simply because of what you’re bombarded with daily on the news and social media. Take a break if you need to! Instead make an effort to listen to the stories of others and empathize. Some may never get it, but you can still acknowledge that the pain is real. Take action! Donate! Vote! As human beings we should already know that “all lives matter” because that’s a given. We simply need to get to a point where black lives are incorporated into the equation as well. I am proud to say that I have finally reached a point in my life that I am no longer conflicted about who I am. I am no longer hesitant. I am no longer ashamed. If anything, I now enjoy being so different while living in this crazy world where people do anything to try and stand out! Today I can say with assurance that I am a proud Black-American, disabled, bi-sexual man who embraces every element of what makes me, me! 💙💙💙

#Blacklivesmatter Text FLYOD to 551-56 to sign the petition and donate! ✊🏽🖤

In Loving Memory of George Floyd!
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Finally Owning My BLACKNESS (Part 1)

Juno, Ludwig, Mayfair, Lo-Fi…I just could’nt seem to make up my mind. I swiped back and forth repeatedly through the various filters trying to decide which would be best for the unveiling of my memoir, “1 Man, 3 Hearts, 9 Lives.” In the year 2015, it was all about social media presentation. I had spent the last three years of my life pouring my heart and soul into the development my book. Night after night, I dreamt of the moment when I would finally be able to share all of my hard work with the world. Therefore, I wanted the reveal to be absolutely perfect. My main objective here was to keep my complexion from appearing too dark in the photo. My thought process in doing so being that God forbid I look “too black,” deterring potential buyers and readers. Now I know you must be thinking that the whole filter selection process is a bit extreme. But tell me this, was I really all that crazy for my thinking when months later a reputable NY book critic still passed on my book because he wasn’t “interested in reading a book about gangs?!

“Sierra, this is the one,” I thought to myself as I finally settled on the perfect filter to compliment my self-loathing.

“Too dark” vs. “Just dark enough”

One would think that growing up in a Haitian/Jamaican household filled with the sounds of Soca music, Calypso, Reggae, Kompa, eating rice & beans, plantains, curry goat, oxtail, sauce pois, and a Haitian nanny who didn’t speak a lick of English ( God Bless you Therese), that I would have grown up feeling so proud and secure in my culture. On the contrary, here I was, thirty-two years old and still unable to fully claim my blackness. A typical Judas, only claiming rights to my ethnicity when socially acceptable, and denying it other times when not. After many years of therapy, and soul searching, I attribute my lack of self acceptance largely to two things. One being all of the childhood trauma that I endured, teaching me that being black was just not something to be proud of. Second being a lack of education about my heritage. This is not to say I was not exposed to my culture, I just did not learn enough about it. Nor did I receive the reassurance I needed to be secure in my colored skin. But don’t get it twisted, we made annual trips to see family in Haiti, France, and Jamaica. Not to mention, I speak fluent Haitian Creole: Sak pasé, m’ap boulé!

I grew up in a small town called Norwood, New Jersey—my family being one of the only black families to live in such a prestigious town. Aside from the one or two other black kids in the area, there really wasn’t anybody else that looked like us. In fact, most people just assumed that we all must be related somehow. My family is also fairly light-skinned, which only added to my confusion as to where I fit in. And again, my parents never really sat us down to break down racism or explain to us that we were culturally different. I think they just kind of figured we knew, but we didn’t. To be honest, I never felt any different either, until slowly over the years things became more and more evident to me. We were not all the same, and as a black boy/man I would have to learn “my place” in society. In other words. Santa Claus is not real people! Going out into a world where you are completely different from everyone around you, only to realize that you’re the only one unaware of your differences, is incredibly terrifying.

I’m not sure if my parents entirely knew how unconnected I may have felt sometimes. They fought hard to give us a wonderful life, and my siblings and I were truly happy. Now although I never felt fear for my life, nor was I ever forced to use a different bathroom, or drink from a separate fountain, the underlying racism which occasionally popped out in my area was very real. Racism does not always present itself as a knee crushing blow to the throat killing an innocent man in broad daylight, it can also be a dirty look that says, “you don’t belong here.” It can be another mother in the park politely asking my mom if she’s our nanny. Better yet, it can be casting me to play the role of a monkey in the school play, despite my many other noticeable talents. There’s levels to this shit!

The first to event to chip away at my ethnic pride took place in the summer of ‘91

Age 7

Wiping away the window condensation with my fist, I looked out to notice that the grass was still iced over with morning dew, as the bus pulled up to camp. The windows were muggy from the humidity, which kept some of the kids entertained as they drew pictures and silly faces in the fog. It was not even 8AM, which meant it was going to be a scorcher. The bus came to a halt, and we all proceeded to pile out. No sooner than I stood up, I was plopped right back into my seat as the other bigger boys stampeded past me to the front of the bus. Camp was all about physical activity, and with my newly implanted pacemaker, I was always so nervous about not being able to keep up with the other kids. Don’t get me wrong, I could hold my own, but by no means was I anywhere near an all-star athlete.

“Alright, line it up!” yelled the head counselor blowing his whistle. “Group A, B, and C you guys are going to be heading down to the field. Groups D, E, and F you guys head to your lockers and get changed, we’re going to the pool!”

I hated swimming first period of camp. The sun wasn’t even fully out yet, and the water was always freezing that early in the morning. Not to mention, I always felt uncomfortable taking my shirt off, because I didn’t want the other kids seeing my scars. I quickly changed, shoving my bag and the rest of my belongings into a rusted old locker. I threw my towel over my left shoulder, perfectly covering my pacemaker. We then made our way down the hill to the pool area and sat down on a set of bleachers, as we waited for the lifeguard to explain our activity of the day.

“Listen up campers, here’s the deal! We’re gonna start with some relays so partner up. Once we wrap that up, we’re gonna play some water volleyball! Fastest pair in today’s relay gets a free ice cream cone from me at lunch. Let’s Go!”

I grabbed my friend Colin, and I was the first one in the water when the whistle blew. I gave it my all. I had a pool at home, and I took regular swimming lessons with my Uncle Chico, so this was where I knew I could show my strength. Once I got over the shock of the cold water, I was killing it, and my partner and I ended up placing first. Unable to contain himself, Colin ran up to me for a hug, chest bumping me in the process.

“Owwww!” I yelled as I hunched over clutching my chest.

“I’m so sorry, you okay man? I hurt you?” Colin asked placing his hand on my head.

“Woaaaaaah! Dude, your hair is waterproof! Guys come check this out!” he yelled.

“No, no, no, please don’t,” I stammered, “I’m fine. Really, it’s cool!”

It was too late. Before I knew it, I had several tiny camper hands bouncing on my head as if it were a sponge.

“This is so awesome! It’s like a Brillo pad!”

“Does it ever get wet?”

“Wait how do you cut it?”

“Does it itch? Cuz it feels fuzzy!”

“If you fell on your head would you just bounce back up”

I wanted to crawl in a hole and die, as all the kids played with my hair, erupting with laughter. At this point, I could care less who saw my scar, I just wanted them to stop talking about my hair. I was so embarrassed!

“Hey! Enough! Get back in the water, and let’s play some volleyball,” shouted the lifeguard.

Saved by the bell. After that, I just couldn’t seem to shake the feeling of being strange and different. Even after winning the relay and receiving a free ice cream cone, I was still so deflated. The jokes didn’t stop either; we all know little kids can be ruthless and the nickname “Brillo head,” stuck with me for a while. One of the boys even wailed a ball at my head during volleyball just to test his theory about objects bouncing off of my fluffy fro. Children can’t be blamed for their innocent ignorance, however education starts at home. This instance created an environment that birthed a lot of self-hatred. I started to avoid “anything black,” and even went so far as to change my appearance physically just to try and blend in. I noticed that even my parents spoke differently when around white people, making every effort to conceal their native tongue behind a forced posh American accent. Much of our behavior is taught and learned by what we see exemplified around us. But it wasn’t long before I learned that acting, dressing, and speaking a certain way would not ultimately protect me from racial discrimination. No matter how smart, distinguished, successful, or well spoken I was, as a black man…some people would only see a n*gger first; a harsh reality that I just did not want to believe. But I will no longer make excuses for, curtail, or mute my blackness for the sake of making others feel comfortable ever again! 💙💙💙

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Heart(s) of a Lion! 💙💙💙

“Ughhhh!” I grunted with frustration as my fork slipped out of my hand for the third time falling to the floor. However, not before also spilling half of my dinner into my lap. Thankfully, I was at home and not out somewhere to potentially embarrass myself. Progressive weakness in both of my hands has been my biggest recent challenge. And I’ll be honest, it scares the living shit out of me. My hands are my only remaining lifeline in maintaining some level of independence. Not to mention, another ability I have failed to truly appreciate, until it started to go. I closed my eyes squeezing them tight with anger, as I clenched my teeth praying that this was all just a bad dream. My wish was to wake up and be back in the year 2007, with a fully functioning healthy body. Then, I would simply get up, grab some paper towel, and clean myself off…no big deal. Instead, I opened my eyes to see the complete mess I’d made in my lap, knowing full well that I couldn’t do a damn thing about it without Mishka’s help.

“Yup…this is still my life,” I said aloud as I shoved the plate forward, nearly pushing it off the tiny bedside table in my room.

This is usually one of those deciding moments of my day, where I end up either just breathing it out and regaining my composure, orrrr I completely lose my shit, and start spiraling into an abyss of negativity. Well on this particular night, it was the latter. A rough dialysis session earlier that day, already had me in a cranky mood. I also had an awful migraine, and felt completely drained. The day had been challenging enough as it was, and the last thing I wanted to deal with, was my inability to just scarf down my mom’s homemade beef stew. Especially, because I was starving, and it looked delicious!

JLA’s homemade beef stew! 😋

Instead of just taking a deep breath, my brain immediately went into overdrive. I now started to go over all the various food items that I could possibly have trouble eating in the future. We’re talking about completely pointless thoughts. I don’t even eat venison, and I found myself so worked-up about potentially, someday, maybe, having trouble cutting up some prime deer. I’ll tell you first hand that anxiety is a real bitch! Because then suddenly, as if a fully stacked domino maze in my brain was just waiting to be set off, one negative thought started to trip off another, causing me to over analyze every limitation, every obstacle, and every hardship awaiting me in the future. I felt incredibly overwhelmed.

“You dirty little cow! I kill you!” joked Mishka while making his way around the corner to my bedroom, having just received my text about the mess, “Oh my God, look at this!”

“You crying?!” Mishka asked in shock, now picking up on my melancholy demeanor and noticing the tears rolling down my cheeks. Slowly he pulled away my rolling table, sauce still dripping off the sides and crouched down in front of me, “Wait…what’s happening with you?” he persisted as he started to clean up.

“This is just so hard for me sometimes Mishka…I just don’t know how much more I can take! I can’t even eat food now without having trouble. And, just when I start to think that things are at a point that I can manage, another hurdle gets thrown my way. I just don’t know how much more I can handle. What else will I not be able to do?! When is it going to be enough?! It’s just so, so hard sometimes to accept that this is the reality of my life you know?!”

“Heyyy…hey…look at me! Chris…I know is hard. But we are in this together 24/7. We even going in a toilet together. Believe me, I know is very hard for you, I see everyday with my eyes. But also, I know you are strong. Remember, you are Zoro! (the nickname he gave me after the first couple months of working together.) You have heart of a lion, I swear! Never in my life, I see someone strong like you. What you have inside is most powerful. This, you can never lose! But the mess?! Please, it’s nothing. Don’t get worried. I get you spoon, I think so will be easier for you.”

His mere patience and understanding at that very moment was everything to me. Coming up on our 1 year anniversary of working together, Mishka is literally my right hand man. There have already been countless situations requiring him to step up, and he just crushes every time. Truth be told, Mishka treats me like royalty more-so than a handicap. We have developed quite an understanding of one another over time, and he has essentially become my friend. Mind you, it took getting through quite a few other candidates prior to him, before finally landing such a good fit. I’ve seen what’s out there and trust me, it’s not pretty. And therefore, I am very grateful to have Mishka in my life! Especially, as we navigate living through this worldwide Covid-19 pandemic. I honest to God feel safest under his care. His being an OCD, clean freak, European version of Chuck Norris are simply an added bonus. I say this because his encouraging words really struck something in me that night. It was the perfect reminder that I needed, of just how f*ckin badass I am.

Myself & Mishka
NYC 03/05/2020

Mishka is exactly the support and energy I need around me. He is empathic to my situation, while also making sure to keep me motivated. And yet, I can never forget how important it is that my inner voice always be the strongest! Mishka may have pulled me out of a rut and pumped me up for that night, but ultimately this is an everyday internal battle for me. Support is an amazing thing to have, but in the end I have to rely on myself to be strong. I always say life is a summation of peaks and valleys. One can never be too prepared for what may come your way. We get hit with highs, lows, and everything in between. Unfortunately, the valleys can be very daunting and tough to recover from. And I must say that it wasn’t always easy for me to be so candid and open in sharing the vulnerable sides of everything that I go through. However, I do find great comfort and power in connecting with others and learning that as people, we are not alone in our struggles. Everyone eventually faces some sort of turmoil, and has their own headaches dealing with day to day. We are all out here, doing our best to survive—whether that be physically, mentally, or emotionally.

You may see me as a brave face on social media. However, one thing I need you to know and please understand is that I do get angry. I get doubtful. I get sad. I get anxious. I get jealous, I get all of those things and more, but I NEVER GET DEFEATED! The spirit living inside my shell of a body is far too strong to ever let me give up. Over time, I have learned how to embrace my raw honest emotions as soon as they come up and deal with them head on, rather than to run from them. It took many years of grueling work in order to get where I am at mentally and spiritually, but I can assure you that it was all worth it. Life is about growth & perseverance, but this takes time. People always say to me, “I could never be as strong as you,” “Man, if I was in your shoes, I would never make it.” Well I’m telling you that is a bold face lie. You absolutely could, but only if you want it bad enough. Only if you were to push yourself to the limit and break through. How far are you willing to push to bring out the lion heart inside of you?! Had I been given a roadmap to my life as a child, I assure you that I would have had my share of doubts as well as to whether or not I would be able to survive all of this. We truly don’t know what we are capable of until we are put to the test. Because guess what, there once was and will again in the future be plenty of moments when I just don’t know how I will get through it. That is of course, until I remember who the hell I am, all the things I’ve overcome, and the powerful miracles that I’ve personally experienced! My body may be losing function, but I will always have my lion heart(s)! 💙💙💙

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“A Breath of Fresh Air” (Part 2)

I was consumed by panic, my heart pulsing in my throat, but I needed to regain control and focus! I had to find a way to let someone know that my suction machine was still turned off. My eyes darted around the room, as I tried to think. Finally, with the little strength I have, I slammed my left forearm against the side of my suction, alerting my nurse Xin to the fact that the machine was still turned off!

“Jerry! The machine! It isn’t on!” she shouted.

Jerry (my respiratory therapist) looked perplexed, as he double checked the machine, realizing that it was indeed still off. Just as this genius discovery was being made, the emergency team arrived in an effort to try and gain control of the situation. Within seconds, I was rolled onto my left, a cold hard plastic transfer board shoved under my backside, and I was immediately lifted over to a stretcher. I then felt the edge of a cold scissor blade run up my stomach, as Xin cut open my white t-shirt. She then placed several cold heart monitor leads on my chest along with two large cardiac paddles. This was not good!

“Preparing to deliver shock. Please step away from the patient,” a robotic voice coming from a portable defibrillator repeated over and over .

“Vitals?” yelled the attending in charge, “and what caused the bleeding?” he asked, turning to Jerry and Xin for answers.

“I don’t know Doc. I just came over and seen him like that, and suddenly he was sayin he can’t breathe!” explained Jerry, while Xin rattled off my vitals.

“I’ll need a CT scan to see exactly what’s going on inside, but in the meantime, we have to get this bleeding under control or else he will go into cardiac arrest! Let’s try suctioning him again! Nurse, please prepare him for emergency transport to the ER!

I frantically shook my head “no” when I heard the mention of suctioning again. My fear was that removing my ventilator tube would stop the little air flow that I was receiving. They removed it anyway, and tried to suction me once more (this time remembering to turn the machine on). However, the strength of my tiny portable suction machine just wasn’t doing the job. I couldn’t breathe at all now. I slapped Jerry’s hand repeatedly, signaling him to stop. This was not helping, and if anything made me feel worse. The suction catheter was immediately pulled out of my lungs, and my vent tube was reconnected; a tiny stream of air still all I was able to get. My lack of oxygen now had me flailing all over the stretcher—involuntarily kicking two other staff members standing by me in the process.

“We are trying to help you Christopher! You need to calm down!” shouted the attending, pinning both my shoulders down as he stared directly into my eyes. His entire face was laced with vexation.

“But I can’t breaaaaaathe,” I tried to mouth out, as tears streamed down my face, my eyes pleading for the attending to do anything to help me! I felt like no one was understanding how terrible this was.

“He’s clearly not getting enough oxygen, we need to bag him!” shouted the attending.

Within seconds, Xin handed the attending an *ambu bag, and once again disconnected me from my machine. Being bagged is awful, but there was no other choice. They had to act fast. The ambu bag was attached to the end of my trach, as Jerry then proceeded to squeeze the bag repeatedly in order to give me breaths of air, similar to a CPR fashion. It is so uncomfortable, especially when you’re still alert enough to know exactly what is happening. There is also a degree of claustrophobia that comes into play if the person controlling the breaths isn’t doing so with a consistent rythym. Jerry was having issues with that as well, forgetting to squeeze the bag every so often. Although when done correctly, the bagging was actually helping a little. However, I still felt like I was sucking in air through a tiny straw. I was trying my best to stay calm, but I honestly did not know how much longer I’d be able to tolerate that feeling.

An *Ambu Bag is a hand-held device commonly used to provide positive pressure ventilation to patients who are not breathing or not breathing adequately.

The build up of gurgling in my lungs caused me to cough, blood once again spurting from my trach into the ambu bag.

“We need to move people! We don’t have time here!” yelled the attending impatiently, as Xin grabbed the last of the emergency supplies needed for transport to the Emergency Room.

“Are we ready?! Okay, LET’S GO!”

The emergency team stampeded down the hall with me as fast they could. The trip seemed to take forever. Each bagged breath I took, feeling as if it would be my last. I couldn’t stand one more second of feeling like I was suffocating. I closed my eyes, and for the first time in my life, I asked God to just take me. My eyes shot back open, a light slap on my cheek bringing me back to consciousness.

“Chris?! Stay with me hunny, we’re almost there,” reassured Xin as she rubbed my head, “ we’re going to ‘Room 18’ doctor,” she directed.

I was so out of it. All I knew was that we had made it to the Emergency Room. There was now even more commotion around me as the urgency to save my life continued. I could suddenly hear my mother screaming in the hallway, as staff members fought to keep her outside.

“What’s happening to him?!” my mother cried out, “Chris! Chrissss!”

“Ma’am he’s okay. You cannot be back here. Please wait outside and give us a chance to take care of your son,” said a security officer.

“Chris, I’m here okay. I’m right outside! I’m not leaving you! Stay strong Chris!” My mother’s voice fading as the officer led her away.

Due to the restrictions in place because of the pandemic, no one besides Mishka was allowed to accompany me inside the hospital. Everyone in Room 18, was dressed in head to toe protective gear, resembling full on radiation hazmat suits. I looked over to notice a hospital ventilator quickly being setup on my left, as a new nurse entered the room and began to prep my arm for an IV.

“You can’t use that arm,” I tried to whisper while pointing to my ligated fistula.

It’s a good thing I still had some sense about me in order to guide the staff and avoid any further mistakes. My case is a complicated one, and so I often find myself in position of assisting those taking care of me. I’m rare, that just comes with the territory. As the nurse relocated to my right side, I grabbed her wrist tightly, digging my nails into her gloves, begging for some air.

“I know sweetheart, we are here to help you,” she said gently covering my hand with hers. “Just give us a few minutes. All your vitals are stable. I know you feel terrible, but I promise, you are okay! We’re gonna make you feel better, we just have to set everything up.” There was a certain comfort and confidence in her voice that instantly put me at ease.

“My name is Meena, and I’m going to be your nurse. James is going to be your respiratory therapist. He’s here to help you with your breathing okay. But sweetie, I need you to relax for me, just for a second. I need to take a look at your veins so we can try to get an IV in you. Then we can give you some medicine to help you relax. Sound good?”

Hell yes! That sounded amazing! At this point, I just wanted them to put me out. I was also thrilled that someone besides Jerry was now in control. It took about eight tries before they were finally able to get a working IV, but not before blowing out my anticubital (vein located on the surface of my inner forearm). My veins are shot, therefore not their fault. I was so busy trying to focus on my breaths, that I did not even care anyway. Once fully setup, James proceeded to explain his plan of action.

“Okay Christopher, I’m sure that you realize that you have a lot of blood accumulating in your lungs, which is why it feels so hard for you to breathe. In order to get that blood out, I’m going to need to disconnect you from the vent for about thirty seconds just so I can suction you properly. Now, for that thirty seconds you’ll probably be very uncomfortable, but I need you to bare with me here buddy. I promise you’ll feel much better in a few minutes. Can you do that?”

James looked like he knew what he was doing. That type of assertiveness is so important in these situations. I trusted him, and so I gave him the go ahead to proceed. Both of my hands clinched the sheet of the stretcher as I prepared to be disconnected from the machine again. Once the tube came off, my breathing once again completely stopped. I focused my eyes on the ceiling as I counted to thirty. Everything around me seemed to suddenly slow down as I awaited relief. A red rubber suction catheter was threaded down my airway and began to pull out all the blood that I had been drowning in for the last forty-five minutes. I couldn’t believe my eyes as I watched the suction canister fill up beside me. There was just so much blood!

GASP! A surge of fresh air rushed into my lungs, returning life to every cell of my body. Oh my God! I could breathe again! My chest heaved up and down as I desperately tried to catch my breath.

“You still got some more gunk down there pal. I’m gonna go in again okay?” advised James.

Another couple rounds of suctioning, and I finally started feeling like things were under control. Thank God! James looked at me with a proud smile on his face, realizing that we were in the clear.

“Oh man, that was a close one. You’re okay…you’re gonna be okay,” said James as he looked at the monitor watching my numbers begin to stabilize. “You have an angel watching over you Chris, never forget that! Let’s get you over to Cat scan, see if we can figure out what caused this mess!”

My CT scan later showed that there had been a small tear in the lining of my lung tissue, which was most likely caused by a new suction catheter that I’d been using. My preferred catheters are no longer being manufactured, and so I’ve been left using a much harsher brand. This new catheter could have easily nicked some tissue in my lungs causing me to start bleeding.

*I am currently in need of the BARD X-ray Opaque Red Rubber suction catheters with connectors.

That entire situation has traumatized me. I’d be lying if I said it didn’t. For days after, I was left feeling fearful and anxious. I questioned everything, trying to make any sense of it all. Every time I saw residual blood in my suction tubing, it would set me off into a panic attack. I did not even want to be left alone the first couple days following the incident. Thankfully Mishka was very understanding about that. Physically, I am happy to be back to my base-line, feeling as if nothing ever even happened. But, I am still left working through the emotional toll that this has all taken on me. I have spent a lot of time writing and reflecting this past week which has helped me a lot. I’ve also had to really dig deep and remind myself of my fight. I am a warrior! As difficult as that may have been, I made it through. My message here is simple, sometimes in life we feel like we are suffocating. We feel as though we cannot bare one more second of the pain, but I am here to remind you that giving up is not an option, and we must FIGHT until our very last breath! 💙💙💙

*All names have been changed for privacy reasons.

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