The Lessons I’ve Learned Living With a Terminal Illness
I celebrated my birthday in April, after nearly dying from complications at the beginning of this year. I have surpassed my initial prognosis of not living past 5 years of age by twenty-three years. I have fought incredibly hard to make myself eligible to be evaluated for a third double-lung transplant with UCLA Medical Center.
We are capable of anything if we work hard enough. Time is precious. We don’t realize what a gift it is until we have little of it left. We have an opportunity every single day to find purpose, and to be happy. Life is too short, even if you live a hundred years, to wake up or go to sleep unhappy. Live every moment with intention and happiness. Remember that happiness and gratitude go hand-in-hand. Be grateful for the things that most forget to be thankful for, such as your ability to breathe and to walk a few feet without the need to sit or have an oxygen tank. And please, be grateful if you are lucky enough to have your health. Be proud of yourself. Be present with your emotions. Be open to all love. Be free of the numbers that try to dictate your life.
These past 10 years, since graduating Frontier High School in Ohio, have come and gone in the blink of an eye, yet somehow, I cannot fathom all that has happened in that blink. I moved to New York City, graduated from Marymount Manhattan College with my bachelor’s degree when I was 20, and completed my master’s degree at New York University just two years later. I moved to Los Angeles to pursue my career. I found a wonderful medical team at UCLA, that helped successfully save me with two double-lung transplants. I fell in love, unexpectedly, with an incredible man.
As I watch graduations happening all around Los Angeles this spring, I am reminded of that beautiful feeling of freedom – freedom to discover my passions, find new paths in life, and figure out who I want to become. However, I’ve always had to consider the reality of my future too, due to cystic fibrosis (CF). When I was 18, I dreamed of a time where I could have true freedom the way most of the people around me had.
I recently remembered that I wrote myself a letter, meant for a very specific moment. I wish I would have embraced these things as a teenager, or even as a young adult in college. I’m hoping younger generations can still learn from my experiences.
I am writing another letter to myself, that I hope to read in another 10 years.
This is an open letter to me, for each of you.
Dear (future) Travis,
I have no idea how old you are currently (hopefully old enough to have grandchildren), but I promised not to share this with anyone until the time was right…
You are about to head off to New York City; it’s unbelievable, to be honest. We were given five years to live at four months old because of cystic fibrosis. Somehow you have erased that expiration date from the bottom of your foot and created a new destiny for yourself in a city of millions, from a graduating class filled with just 70 hopeful students. You have achieved so many things already, and right now, you don’t feel comfortable enough to be openly proud of those accomplishments. Thus, the first thing I want to tell you is that I am proud of you. You should be proud of yourself right now, wherever you are, doing whatever you’re doing. Please don’t feel ashamed for being different, the way you have for the past few years in this teenage purgatory.
That was lesson one.
Now, to address the elephant in the room. We both know why you’re reading this… and why it’s being shared with family, friends, and potentially many more people – assuming you’re comfortable enough to put it out into the world.
You’re dying. Before you get upset with that wording, because we both know you will, dying does not mean you’re quitting. It does not mean you’re any less of a survivor. And it sure as hell does not mean you’re not a damn fighter – because you are. It’s just the process of your body, in its current state.
“Terminal illness” is a complicated truth that we’ve been coming to terms with for a long time. I’m not sure what has happened to cause the position you’re in, whether it’s CF, complications with an organ transplant, or perhaps something else… but now, there are a few lessons that you must be reminded of today, and every day from here on out — things the rest of the world could benefit from reading as well. I hope that however old you are, my 18 years of life can somehow bring wisdom to the situation you’re in, one that many others face as well.
So, here’s lesson two:
It’s OK to show emotions. I know (as your teenage self) that you put up a front a lot of the time. You are strong, but you don’t share your fears with many people, because you feel that you have a responsibility to be the “Travis: the warrior” within your community. You know that the individuals you’ve related to the most during your hardships have been the ones that show their emotion. It makes you feel less alone in your battle… so it’s time to step up and be that person for those in need of someone to understand them now. It’s OK to be scared. It’s OK to cry. It’s OK to be upset that this is happening to you. Allow yourself to be present with your feelings.
Guess what lesson three is… do you remember? Are you too old to remember?
Love. It’s simply love. Love endlessly; love yourself. Love the people who love you, and love the people who may not show it in return, but need it from someone. The love we’ve experienced in our teen years has been nothing more than deep friendships, and that’s OK. But you have the capability to be in love with someone, and to be loved in that same way in return. Be authentic with your love. Allow it to come from the passion in your soul, not the rules that govern your mind. Don’t count the number of dates you have to go on to find it either, because you don’t “find” love. Love is within you, always. Someone somewhere will feel that and reciprocate it. I hope you have a special person by your side today.
Lesson four. I mean… who cares what “number” lesson it is, right? Because…
Like I said about dating above, forget the numbers. You and I have spent our entire life feeling suffocated. Not so much by our plagued lungs, which is true as well, but by the numbers that have dictated everything. The number of calories we must eat to gain weight so that we don’t die. How high or low our white blood cell count is, to recognize infections so that we don’t die. The level of our pulmonary function, to determine when it’s time to list for a double-lung transplant so that we don’t die. The distance we must keep from our other friends with cystic fibrosis (six feet), because of the risk of cross-contamination – again, so that we don’t die. Numbers, numbers, numbers. Stop focusing on them. Just allow the numbers to disappear, because at the moment all that matters is your happiness. And as far as the most significant number of all, the one that has created the most turmoil in your life: time. Well, close your eyes and let time’s grasp on you go. You’ve been told that you’re not going to live to be “X” years old multiple times, by multiple people in your life. You’ve outlived every single prognosis. Smile, knowing you’ve literally made time irrelevant by defying it.
I don’t know how you’re feeling at this moment. I don’t know whether or not you’re in love and have a family of your own. I don’t know where you’re living in the world. I don’t know anything about the future version of my life.
But, I do know this for sure:
You are Travis Flores. You’ve helped countless people and charities. You lived an incredible life for the first 18 years you spent on this earth. You have two amazing brothers. Your parents are the most caring people in the world. Your close friends supported your adventures, even when your other peers did not. You have a legacy, because you have lived a fulfilling life.
Who I was, who I am, who I become… it’s a part of a plan.
Where I’m from, where I stand, where I go… it’s a part of a plan.
PS: Please thank Make-A-Wish Foundation, the Cystic Fibrosis Foundation, the Boomer Esiason Foundation, and Starlight Children’s Foundation for their commitment to help you and so many others.