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)! 💙💙💙

About 1 Man, 3 Hearts

After collapsing in my NJ home one night at the age of six, due to heart failure, doctors were convinced that I would not live to see my seventh birthday. Three decades later, I have defied all the odds that were placed against me. I will be turning thirty-seven this summer. Upon discovery that I was in complete heart failure (age 6), I was rushed to the NIH research hospital in Maryland. At this time, I had an emergency dual chamber pacemaker implanted. Since then I have survived two heart transplants, a kidney transplant, gall bladder removal, lung collapse, pain medication drug overdose, and a tracheotomy. Unfortunately my transplanted kidney failed two years ago placing me back on dialysis three times per week. At the age of twenty-seven, I was diagnosed with a rare muscular disease known as Myofibrillar Myopathy. This disease progressively attacks the various muscle groups of a person’s body over time. In my case, it was discovered that this disease was also responsible for initially attacking my heart muscle at age 6. In the last two years, I have lost usage of about eighty percent of my bodily function to my illness. I am currently wheelchair bound, sleep with a ventilator every single night, and require the assistance of a full time (24/7) personal aide who resides with me. My life is full of challenges, it’s all I’ve ever known. I’ve had my share of dark moments. However, I refuse to allow this to keep me from enjoying life and living everyday to the fullest. I have gained a great deal of perspective and learned many valuable lessons over the course of my life. My goal is to be able to give back and share my story in a way that can help others who may be facing difficult circumstances and encourage them to keep fighting. I also believe it is important to raise awareness for rare diseases as well as the importance of organ donation. I have chronicled my life in a book, “1 Man, 3 Hearts, 9 Lives,” available for purchase on Amazon. I truly appreciate all your support, thank you! 💙
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7 Responses to Heart(s) of a Lion! 💙💙💙

  1. Letty Cantamessa says:

    Wow! Love you my Xtophe!!! ❤️❤️

  2. Dee says:

    I absolutely love the sound of a roaring lion and your words, whether spoken or written, is your roar!

  3. Radame says:

    Awesome piece of work!!

  4. Gladys dorcilien says:

    Wow ! You got that all figured out. You are so right. In my book, I found myself written that I was three women in one: the abused, the public figure and the women of God and you came to my mind. You got a perfect brain! Glory to God. The rest, leave it to your gardian angel Mishka.

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