Please start and continue to keep sharing this website with your friends and family and help me share this story with people that could benefit from knowing they aren’t alone. Please consider helping aclottedjourney.com also, see below for details on that! Enjoy Part 27 to my ongoing story! Apologies that it has taken me so long to write this entry, I am back and here to hopefully write until my story completes.
“To share your weakness is to make yourself vulnerable; to make yourself vulnerable is to show your strength.”
Criss Jami
The feeling of having a disease process define you is indeed one that I hope anyone who reads this doesn’t have to feel until late in life. Some of the few souls that life feels the need to challenge have the unfortunate experience earlier on in their journey though.
Being young and invulnerable in every persons journey develops and influences many parts of an individuals character. I remember so vividly feeling at the top of my game when this all started. I remember so vividly feeling like I could out-tough any hard situation in life. College classes, maintaining a relationship, finding the time to workout, having a full time job where I lived… All of these things added stress but I lived by the simple philosophy of life is hard, but I am harder. As I said in the beginning paragraph and at the start of my story, it is inevitable that we will all feel this crush of ego in life. Its one solid truth of living, no one gets out alive. This fact I hope to explain enough to not depress you, but to empower you. I felt hard. I felt like I was outlasting the struggles. But I was destined, whether I liked it or not, to be taught a valuable lesson of humility very early in life.
Hearing that news of having six months to live when I was misdiagnosed with CML (Chronic Myelogenous Leukemia) in my early 20’s will always haunt my reality. I remember nothing could get me out of my mind when I was given that news. I remember my girlfriend cooking with me to make my favorite meal, I remember getting a new video game, nothing could distract me from that reality that this life and everything I wanted to live for was going to end, very soon. There are many things in life that you can outwork, outlast, and outperform… But one thing that I have learned in my life loving genetics, is the one thing I loved learning about is also the most damning also. When a gene is mutated within your body, and I promise you all of our bodies will make mistakes, you may not feel the damage for many years. Think about this, your body is in constant flux of new strands of DNA being copied and replicated to make new cells all over your body. A constant novel being written is bound to have some spelling errors, no matter who you have proofread. Longevity and life is truly defined by what mistake happens first. You can do everything in your power to save yourself from this, and still fail. Life is never about winning, its about cherishing what you do have.
I blinked my eyes and realized that Megan was waiting for an answer on what the long green pills did and what the small pinkish pill did. I remember my mouth feeling dry and my anxiety rise through the roof, a feeling of being alive that I hadn’t felt in a minute while taking the anti-depressants. The feeling of my ego and my life being crushed by my entire story flashing before my eyes mixed with the current reality of staring at one of the most beautiful souls was like mixing a fresh water river and the ocean. Before I opened my mouth, I blinked again.
My brain flashed all of these memories of being crushed by once again, this time bringing up the memory of the first time I lost a love from all of this. The first time I lost someone who knew this vulnerability of mine. I had put so much trust and vulnerability out in the open for my girlfriend back then. She was their for the appointments. She saw me get the bone marrow sucked out of my body. She saw me not know what to do when I felt like I was having a heart attack as my internal organs faded, she saw me getting torn apart. Broken, I still had to lose someone like her. Looking back at it all, everything happened for a great reason obviously. But in this moment, losing the person that I trusted the most with life and the person I had plans of a future with, it truly scarred my sense of self-worth even further. Had this news, this clot, this health issue… stolen Alex? Stolen his character and the reason people fell in love with him?
Opened my eyes, Megan still staring at me waiting for the answer, hoping that I wasn’t addicted to some illegal drug is probably what she was thinking. Everything that pretending to not be sick in front of Megan had gotten me was at risk in this very moment. I opened my mouth and told her about the pills, told her about the struggle, and told her why I didn’t want to tell her. My heart sank as I waited to hear a response from all that I had ever dreamed of. Had this medication defined me more than who I was? All of the progress that I had made regaining my sense of “Alex” in this moment had degraded. All of the life experiences I had leading up to that diagnosis was what I wanted to hide behind, impossible though now that it was a mirage of the past.
My future wife looked at me and said… something, I can’t really remember. What I do remember, is that the way she looked at me didn’t change, if anything it was stronger. The vulnerability and wall that I had torn down in my own castle, only helped build the new castle we hoped would flourish.
Blinking again through near tears in my eyes, I was in shock in awe that someone had seen value in a broken life. Someone had found value in the scotch taped pieces of my broken soul and heart. The extra serotonin and the thinned blood rushing through my veins had little effect on this dream. My soul was crushed after trusting someone with all of this in the past. My soul was crushed in the past when I felt as though my last real relationship ended because I felt like I wasn’t enough to be in her life anymore. My soul started to see a rebirth in this moment. I’ll end this part of my story here, but I’m excited to share what happens next!
Thank you all so much from the bottom of my heart for all of your support!
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