The only thing I’m truly afraid of in this world is running out of time.
You'd think that would make me less of a procrastinator, but I submitted an assignment with a midnight deadline at 11:59:57 recently - so I'm still working on that. I mean it more in the sense of urgency that was instilled in me as a person dealing with chronic illness, nervous that I would never be well enough to go out and do what I loved every day.
Even during my long term hospitalizations, I never liked to refer to myself as a “sick person”. I hate that label, and the thought of anybody feeling bad for me sort of made me feel like my skin was on too tight - it still does. I don’t mean feeling bad for me in an empathetic sense. More in the way of somebody taking pity on me for my obstacles and thinking that they make me any less capable, because they don’t. I made that decision a long time ago to never allow that to happen.
I was diagnosed with tumors for the first time when I was 13 years old. After my third surgery at 19 years old, I was also diagnosed with a rare genetic disorder where I am missing a tumor suppressor because of a mutation on my DNA, so my body is more inclined to create masses that need to be monitored frequently for cancer. It has been an exhausting journey, but rewarding all the same. I have seen ICU’s in several states and cities. I’ve missed out on some important days, but I’ve gained many more to make up for it now. I am incredibly grateful to have supportive friends and family, access to some of the best medical care in the country, and this unwavering resilience that carried me through. The hardest days were the one when I would be up in a hospital room with an IV or two in each arm, wishing with everything I had in me that I could just be out on my own feet, not attached to any machines, just doing what I love. Just living my life. I used to spend a lot of time in there worrying that I might not ever be strong enough to do what I loved, to travel, to go back to school, to get into college. Just when I got comfortable with life again after my first bout of surgeries, my tumors spread to my chest and I was forced to come home from college to deal with that in my second semester. I felt like I couldn’t define stability. I was afraid that the hypothetical hour glass didn’t have enough sand in it to see me out. I was afraid that the universe wasn’t going to play out in my favor, but I decided to convince myself that it would anyway - and I waited.
Fast forward to now. I’m in my twenty first year on this earth and I’ve never been healthier. I have met a ton of goals I set for myself, from getting to travel for work and starting to take on PR clients of my own, to getting back on the Dean’s List at college and getting my photos published in the pages of Alternative Press. I still run into some days where I don’t feel my best from time to time, but I’m only human - it happens to the best of us. I emerged from the toughest times and went into recovery with a few lessons that I want to share with those of you who may feel you still are struggling to figure this out for yourself.
First and foremost is this: you are not what’s wrong with you. Your life’s path is not determined by whatever kind of demons you’ve faced - whether they are physical like mine, or otherwise. There are some people in this world who you might encounter that want you to believe differently, but I promise you that it isn’t the case. We all are given a choice in life when we face challenges: either allow it to drown you, or you carry it with you as you go forward and proudly show off the scars. Say to people, “Look at what happened to me - but look at what I did in spite of it. Look at who I am in spite of it and how powerful that has made me feel today.” It’s so important to realize that you can use your problems to empower yourself, and to empower others who might be facing similar obstacles. I used to be very confused about why I dealt with what I dealt with until I met the incredibly giving and loving team behind Living the Dream Foundation. Now I work as part of the LTD:F family, and I get to give back to kids who are taking on life-threatening illnesses, always hoping to instill some of my peace and acquired wisdom in them so that they have a little bit of an easier time conquering it all. Being in a position to help others through my struggles is what made me realize I had not suffered in vain. What I faced has given me the opportunity to change the world one kid at a time, and I would be incredibly silly to pass something like that up.
There is not a single thing in this world that I feel like I’ve been cheated out of because of what I went through. I set goals for myself over the course of the past few years and I met them despite being out for the count for a while in between. For me, that always came down to being able to project myself past what I was facing. I hit the ground running when I was feeling better and I took full advantage of every single day that I was well enough to roll out of bed once I had my life back. You have to realize there’s a future for you, and there’s a day where it’s all going to be better even if it seems like there won’t be right now. I know it’s easier said than done, but I promise there is hope if you believe there is - just be patient. The way I see it is this: I have huge dreams and ambitions and I would be cheating myself out of something beautiful if I dwelled on the negative for even a second. Forward progress is always the priority, no matter how small your steps are. My tumors were mere footnotes in a bigger, far more beautiful story than the days I spent staring up at the children’s hospital’s ceiling. The earth keeps turning and I went along moving right with it. So it goes, you know? This is only the beginning.
The next time you are starting to tell yourself that you are never going to make it because you’ve got a lot of weight on your shoulders for one reason or another, I want you to remember my story and realize that you still have options. Nothing is an end-all if you don’t want it to be. It might take you a lot more effort and patience to get to where you want to be, but you’ll get so much more out of the journey if you just stick with it and see it through. Utilize your setbacks as more reasons to succeed. Raise your voice and be proud of your fight - I know I am.