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! 💙💙💙

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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6 Responses to Outliving My Fears!

  1. Jennifer Lafontant says:

    Chris , my first born . I continue to commend you on a powerful read . I must say , without hesitation , one of my favorite things is sharing conversations with you ! We always feel so positive , despite the reality of what we face . A positive attitude takes work , patience for answered prayers . Complacency is easy and destructive . We have faced more than our share of challenges . We overcame only because we stuck together , because you kept fighting . We looked on in awe ! Our close family remarking , how does Chris do it ? Your mental energy and drive to keep going became the engine that drove us ! Tomorrow is not promised to us . Let’s keep fighting , knowing that happiness is fleeting . It is our job and duty to replenish our happy tank when it runs low ! We can do it , we always did ! Safety and good judgment will direct our path as we navigate these turbulent times , I love you so much Chris ❤️❤️❤️

  2. Thank you for those beautifully inspiring words from someone who has learned how to truly live his life to the fullest and without a pity party, which comes from someone who focuses on his or her own life challenges. I have learned that the ONLY way to survive in life is to focus on loving and caring for others. Our problems will always be there, but if we take the focus off of ourselves and learn to help others in need then our probkems seem to get smaller and more manageable. It is truly amazing how God works to comfort and take care of us when we are doinghis work in loving and caring for others in need. Your beautiful family has been an inspiration to us all, especially in this time of great uncertainty and fear. I myself have cultivated a very strong faith in God and have learned to surrender to His Will for my life. There is no such thing as coincidence in life. Everything happens for a reason and we need to learn the lesson that God intended for us, or we are destined to have to live through it again. As an interesting fact, there is no word in the Hebrew language for coincidence. God works all things for the good of those who love Him and care for His people. May God continue to strengthen you and your family every moment of every day that He allows us to live our lives. Stay strong in your faith and never give up on God or yourself, as there is a reason for your existence. Living life to the fullest is having to face our fears head on with an undying passion for life and a purpose that transcends ourselves. In the time that I have been blessed to come to know you and your family, I have been emotionally touched and spiritually enriched by how you have all managed to live your lives to the fullest in spite of great adversity and uncertainty. Remember, pain results in personal growth which is what you have so eloquently put forth in those heart felt words of wisdom and love. You are doing God’s work, whether you know it or not. There is no reason to worry about tomorrow as it will take care of itself. Keep up the great work of inspiring others to grow in love and caring for one another, for without love and faith we have no reason to exist as human beings. God bless

  3. Amanda says:

    So proud of you my Rocky!! You continue to inspire me and make me smile 🙂 never stop being you and never be afraid to admit your fears…It’s the best way to create a plan to conquer them. I’ll always be here to listen and help in anyway I can💗💗 We’re going to make it through this!! Keep writing!!!! Love it so much!! XOXOXO

  4. Dee says:

    👏🏾👏🏾Wow! You are such a wonderful writer! I can’t imagine you being complacent for an overly extended period of time. There’s too much in you that needs to come out and quite frankly refuses to be stifled. That’s the beautiful thing❤️

  5. Radame Perez says:

    Awesome read Chris! God has a plan…thank Him for the long life He has arranged for you!! I have a feeling from an innerward growth perspective this is going to be your best year yet. Things have shifted in your favor. You are going to a new level… continue to see the blessings of every moment God has given you, in Jesus’ name I speak peace, happiness and acceptance of God’s control upon you. He has you in the palm of his hand. Keep working hard.. do your part and you’ll see everything that God has in store for you … Know that.. much love Chris!

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