The worst part is that I knew surgery was coming and there’s nothing I can do to slow it down or stop it

I never say this, but I’m not okay. And that scares me.
Author:
Publish date:
Updated on

This post appeared on haparae.

Those in my small bubble already know my backstory: besides the other major adversities in my life, January 22, 2005, may have been by far the most tragic and amazing day. Sparing you all the details, I was crossing the street after playing basketball at the park with my cousin. A car traveling around 60 mph hit us which resulted in me having several head and body injuries. I eventually recovered to be a normal teenager and went on like nothing happened. However, I never knew this event would change my life in so many ways.

After a couple of years, I was suffering horrible symptoms that were so unusual for me but I tried my best to tough it out. It finally reached a point where I could no longer bear the pain and symptoms. I recall my mom (who happens to be a nurse) took me to a specialist at the local hospital. There, they did a bunch of labs and procedures on me and in one blink of an eye, they admitted me as a patient. Hearing doctors explaining to my family that I have been diagnosed with ulcerative colitis and other serious complications… it was so scary and confusing. I didn’t want to believe it because I always assumed I’d be healthy and “normal” forever. It’s crazy how being a generally healthy person for a while, you never think about all the details that are taken for granted like simply walking from the bed to the bathroom without falling.

After being diagnosed, my world became one where I was constantly in the hospital, taking medications, treatments, embarrassing bathroom runs, and missing out on fun activities my peers did. Soon, it became routine for me- what foods I couldn’t eat, taking care of my PICC line, the pain, the undeniable effects of the chemotherapy and illness itself. It was as if someone had turned off all the lights in my world and it became pitch dark. It’s such a disappointing experience when you realize your body no longer has the same strengths, abilities, defenses… or even time. I came to terms that this would be my life for now on. I’d be lying if I said I was never depressed or felt defeated. Keeping up with friends, gatherings, events, dating, school and all the normal things we do as young adults were becoming more and more intangible for me. Looking around, everyone lived carelessly with copious amounts of time to waste. I didn’t have those options; I don’t have the luxury to make solid plans, to know how sick I’ll be feeling at the beginning of my day, wearing whatever I want, go swimming or capable to live 100% carefree. Because time is not on my side. My body has been attacking itself for so long that it’s inevitable that this war will come to an end soon.

“A secret to happiness is letting every situation be what it is instead of what you think it should be, and then making the best of it.” — anonymous

Enduring this illness hasn’t been my biggest obstacle; it’s made me tougher than a rock. I fear nothing, not even death. It’s taught me to be my own patient advocate, to prepare for any medical emergencies, to make the most of a day when I feel well, to talk to young children experiencing the same illness, cherish my body and thank God for blessing me with what I do have, instead of what I don’t. I remember one of my counselors who talked with me in the hospital and addressed all my concerns. She asked me, “If your life was a book, how would you have it written?” That has stuck with me ever since. It was such a humbling way to look at our individual lives and accept that we are the authors. From then on, the only obstacle I saw in front of me was missing out on the chance to live my life to the very fullest regardless of my limitations.

Yes, I’m relieved it’s not cancer but that doesn’t mean I get to clap my hands and go on living my life as if I’m perfectly healthy with no challenges. ‘Cause I’m not. And I never will be. In fact, it’s just gonna get harder from here. Every day I get up and choose to be strong regardless of what’s happening. The worst part is that I knew what was coming and there’s nothing I can do to slow it down or stop it.

I never say this, but I’m not okay. And that scares me.

In February 2017 I had my third surgery, an ileostomy, which hopefully gives me my life back. I already came to terms with the fact that I’ll never be healthy, but I’ll take any positive steps forward that I can get.

The best advice I can give anyone who is experiencing any kind of hardship: get out there and make a difference for someone or something if you possibly can. There are so many needs out there and so many people who have much less than us. Visit a senior home, volunteer at a homeless shelter, go to the VA and listen to the stories and thank them, help out a fellow ostomate… just do it. Make it a habit. You’ll be so invested in doing these tasks, that you’ll forget about your own problems. You’ll stop blaming and viewing the world as a prison because it’s not — life is literally what you make it.

And finally, the art of perspective is simple: life isn’t about what happens to us, it’s about how we let it impact us. So get out there and start writing your book.