I remember the first time my father took me surfing. I was twelve, and we were vacationing in Hawaii. My surf instructor was young, too, like me, and we practiced for a good hour on the sandy white beach before heading out into the ocean. I knew what my goal was—but it seemed to even me, despite my youthful and chronically stubborn optimism, a daunting task.

We waded out until waist-deep and then climbed onto our surfboards. My mind raced with all of the instructions I had just been given, “Paddle hard, hold your breath, use your board to nose-dive underneath the waves when they come crashing towards you; and, above all, watch out for coral.”

Just getting out beyond the surf seemed impossible at first. Again and again, the waves pushed me in reverse; for every inch I gained moving forward, there was a powerful force—the energy and magnitude of the ocean—pushing me backward. By the time I made it out to the calm waters beyond the waves, I was exhausted, and now I had to actually catch a wave. I turned my board toward the beach, readying myself for each approaching opportunity, but no matter how hard or fast I paddled, the waves overtook me, rolling gently underneath my board in a soft but taunting way. They seemed to whisper: Almost, but not fast enough.

I became comfortable with the weight and force of the ocean that day—so comfortable that even when I wiped out for the first time, I did not panic. A froth of white bubbles encapsulated me; I was thrown away from my board and pushed into unconsented somersaults as the waves took control of my body, breaking one after another overhead as I struggled to distinguish up from down in this new, confusing world. At some point, I realized that surfacing was not an option. I needed to wait for a break in the waves. Fighting the urge to panic, as my lungs burned and ached for air, I resisted my instincts and instead sunk deeper beneath the fray and waited for what seemed like hours—the foamy water, rolling overhead as I watched, transfixed, amazed that I wasn’t panicking. It was eerily peaceful the deeper I went, and I was suddenly overcome with a sense of agency, of empowerment, and the knowledge that I was capable of anything. If I could fight my instinct to breathe air, if I could find a moment of clarity amidst a moment where my body was at the mercy of a force outside of myself, I could manage just about any challenge that life threw my way.

The summer preceding my junior year, I was struck by a “chronic and incurable” disease. After visiting innumerous doctors, it was recommended that I not return to high school in the fall. Over the months, my symptoms became more severe. I was bed-ridden and recall nights spent with high fevers, pain radiating through my 16-year-old body, early mornings before dawn, spent crying in a bathtub because there was no one, nothing that could offer relief. I spent over a decade adjusting, adapting to THIS new reality. I found new ways to learn, auditioned for a dance company, enrolled myself in community college and became a member of every volunteer or extracurricular organization that I could think of, and it worked. For a long time, I thought I had found stability—that wonderful lukewarm place where not much changes and everything feels “juuuuust fine.”

Then, in graduate school, the waves came again, this time in an unrelenting, punishing fashion. I still remember the moment I came to terms with my diagnosis—a full 10 years after actually being diagnosed. I can recall looking into the eyes of my specialist and saying the words: “This is going to sound so stupid…but for so long, I’ve really believed that I am not really sick…that the original diagnosis was incorrect. So…I guess I’m asking...am I really…? Do I…really…?” His response and the treatments which followed told me all I needed to know. I needed to look at my life differently. This wasn’t about a cure. It was about giving my body time—the medications would give it that—and in that time, all we could do was hope that someone, somewhere would do the research needed to find a cure.

That year, and the years following, were the hardest of my life. Despite it all, I made daily adjustments, sometimes hourly adjustments to figure out how to live, how to thrive, how to be me with this new, energy-sucking-life companion from whom I, unfortunately, could not divorce myself. I continued onward—graduating with my Master’s degree, landing my dream job working at a nonprofit in the city, and met the man of my dreams. But I was also working 60 hrs./week and commuting over four hours every single day. Three Christmases in a row were spent in bed or in a hospital because I had caught a simple cold, and because of my condition, could no longer breathe without assistance. Balancing health and a demanding career seemed to suck all of the oxygen from out of my body. The waves kept coming—and I began to drown. I was underwater again, but by this time, I had forgotten how to breathe.

Life looked bleak, or as I like to say, “not so hot.” And then, I met Flexability—in a few short months, I became more hopeful. I no longer questioned, “Is this as good as life is going to get for me?” or wondering if I was going to be unemployed or forced to work a job far beneath my pay grade to accommodate the demands of my body. I connected with strangers through articles I was reading on LinkedIn—written by people like me, women or men struggling with MS or Cancer or Lupus. I found strength in these faceless heroes—in people I had never even met—to take a breath once more. It was this renewed feeling of empowerment that showed me I could have it all—health and professional success, ambition, and balance.

People with disabilities, chronic conditions, and compromised immune systems have been “breathing underwater” and living in this alternate world for lifetimes. They are used to the constant pivots associated with crisis management. They are well-familiarized with what it takes to remain healthy when there is a contagious virus circulating amongst the population. They know what it requires to remain productive in a world that is paralyzed by stagnation and economic losses. They have strategized to solve the age-old marketing question, “How do we remain relevant?” because they have fought to prove their own relevance to the world every, single day.

Times are changing rapidly, and as with most rapid change, those quickest to adapt and to create preemptive measures, to embrace or invest in future-facing and inclusive programs will be the ones that thrive. This COVID-19 manifested world of uncertainty and disorder may seem new to you. It is a world where nothing you have done before works anymore—where up is down and there is no opportunity to “surface”—a world where the loss of agency and control has led to chaos and stress. But WE are here. We’ve been here all along: the neural-diversity you are seeking, the innovators, the players with integrity, grit, and unwavering determination. So as old hats, as those who have already been in this space of capricious adjustment before, we welcome you to this new world. We are happy to serve as guides.

About the Author

Kacy Takamoto is the Director of Operations and Development for a local nonprofit, which seeks to uplift talented, yet underrepresented youth and propel them through college. Prior to working for Elevate, Kacy held numerous roles in higher education and organizational management. Her first job, as an English professor at Foothill College, came the summer following graduation from her Master’s program, where she studied pedagogical theories and strategies related to working with at-risk populations and completed her Master’s thesis: “Not to Have Seen It Yet Inheriting It: Fighting Against Historical Amnesia in The Quest to Reach The Freeing Word.” Her commitment to equality and equity stem from time spent within the world of education, as well as her family’s personal experiences as Japanese-Americans, incarcerated in internment camps during WWII. She spends her free time traveling, cooking, and gardening with her husband and hopes to continue to collaborate with companies and organizations that promote social justice, racial justice, and health justice for all.