Give and take

Cystic fibrosis is a disease that does a lot of taking –of dreams, of time, of travel, of friendships, of freedom, of potential, of plans, of lives.

When in the hospital, I’m tempted to think about all the things that have been taken from me. More than that, it’s easy to think about all the things I wanted for my future that might no longer be possible, the will-be-takens.

As a kid, I made plans; I loved getting in bed at night because I had the opportunity to fantasize uninterrupted about whatever I was excited about. Some of what I thought about had to do with the future: where I would choose to live later in life, places I wanted to travel, what I might be like as a teenager and then an adult. Mostly, I envisioned other parts of the world — back then, anywhere was better than Los Angeles. The foreign always transcended the familiar. The unknown was brimming with possibility, while the known was full in a less satisfying way, like a big glass of a clumpy protein shake, the things you know are good for you but don’t rock your world: daily routines, school days spent reading books under the table, long medical treatments I didn’t want to do. As Dr. Seuss says, “You’re off to great places! Today is your day! Your mountain is waiting, so… get on your way!” I believed wholeheartedly in those great places to come.

But as a patient, especially with a disease that’s progressive, time is the meanest of forces. Like the earth’s water steadily erodes rock over the years, causing durable material to crumble with the invisible quality of slow change, my disease erodes the life blueprint I drew as a kid; with time, invisibly but surely, I grow decreasingly confident in the plans that I had etched in this mental map until it’s hard to remember they were ever there. Occasionally, I’ll remember with a smile the whimsical desires I had as a kid, and how tenaciously I fought for them –the dolphin research trip I desperately wanted to go on (never mind that we’d be living without electricity and I wouldn’t be able to do treatment), my water polo team’s trip to Hungary that I wished to go on without a parent. Now, I chuckle because these fantasies were borne out of a sense of entitlement, and I’m thankful to have outgrown that. How many kids, diseased or not, get to go on a research trip to Belize in high school? I couldn’t go because I need electricity; most kids wouldn’t have been able to go because it’s indulgent and expensive.

The things I wanted were never things, though. For the most part, I wished for a life lived honestly, to do good things and to be happy. I wanted a career that, selflessly, would help people, and selfishly, would let me work in beautiful places and in the outdoors. I vaguely wanted beauty — not for me, but for my surroundings. Something about spending so much time trapped indoors has given me a deep appreciation for natural beauty.

A lot of the things I wished for have become reality. I’m incredibly grateful for the health I still have, the people that surround and support me, the time I got to spend at Stanford learning and growing into the person I am today, and the nourishing well of memories I’m able to draw from in times where the memories I’m forming skew more negative than positive.

But I’ve also spent a lot more time than I would like wrestling demons, wasting precious energy suffering with problems derived from feeling like a victim. My blueprint for life is constantly changing, and that’s difficult. That’s what CF does; like an earthquake, it constantly moves the ground under our feet, so we’re always struggling to regain balance, to find our footing. It’s hard to look forward when we must always be looking at the ground beneath us; we’re more lurching than walking, stumbling to stay standing straight.

With constant adaptation comes a remarkable resilience. When my original goals become unrealistic, I compromise. When those new goals become unrealistic, I compromise again. When my replacement-replacement goals become unrealistic, I can get frustrated. But since I can predict that the range of what I’m capable of will shrink, I can plan a life where my goals do not have to be slashed every year as my health declines. And I can be creative with what I’m capable of as the limitations pile on. It’s about perception — if careers are a means to an end (in my case, helping people and challenging myself while making money to support myself), there have to be ways to get there that don’t require a strict schedule, hard physical conditions, or 60-hour work weeks. Being frustrated and angry that something was taken from you hurts creativity, the very same creativity that will help you reinvent your possibilities and achieve your ends. Knowing this trap is the way to overcome it; if my mind is shaking while the ground is shaking, maybe everything will seem still.

So while CF does do a lot of taking, everyone knows that. It’s obvious. CF is a complex, unpredictable, irreversible, progressive, painful, suffocating, choking weed of a disease and it’s okay to hate it.

At the same time, it does give. It’s given me that creativity to reimagine my life, a skill I wouldn’t have needed to develop if everything had been easy and nothing was impossible.

It gives me a community of men and women who astound me every day with the strength and endurance they use to ride through the daily challenges and the life-or-death struggles. We all know this disease delivers both in big doses.

It gives me a way to cut to the chase in my friendships and relationships. Can you hang? Is that same person who’s there when I’m laughing and partying going to be there when I’m sick or sedated? It’s given me a resounding understanding of the value of a good friend, and my incredible luck in having so many.

It’s given me the chance to look normal; not all diseases are so forgiving. It’s a blessing and a curse (a curse when I need accommodations but people think I’m healthy because I look that way) — but mostly, it’s a blessing. I am not forced to be branded by illness on a daily basis. If I choose to disclose, it’s just that: a choice.

It’s given me a second home in the hospitals where I’ve had some of the best and worst moments of my life. I’ve thought I was going to die in a hospital. I graduated college, officially (finished my last final), in a hospital. I’ve spent birthdays and holidays in the hospital. I’ve had panic attacks in the hospital. I’ve struggled to breathe in the hospital. I’ve forged powerful relationships with doctors and nurses in hospitals. I’ve thanked the god I don’t believe in for the care I’ve gotten in the hospital. I’ve seen the strength of my family tested in the hospital. I’ve seen my own strength tested in the hospital.

It’s given me that mountain that’s been waiting for me all my life. That mountain we’re all climbing, each and every day. It looks different for everyone, but we all have our own struggles, each and every person I see on the street. I have to remind myself not to envy those whose lives look normal, because their mountain does exist, even if it’s less obvious than mine.

It’s given me empathy, and gratitude, and courage, and humor, and heartache, and happiness.

All that giving balances all that taking and in the end, I’m still here, in my second home in the hospital, having some of my best and worst moments, feeling at times like I’m going nowhere but knowing that, in reality, like Dr. Seuss told me I would, I’m getting on my way.