It took twenty eight years of testing for doctors to draw their first conclusion from a myriad of life-altering symptoms I’d experienced since birth, starting me on a path that would end with a diagnosis for a terminal illness. Nearly three decades would pass before any medical professional could offer an explanation for the mysterious aches, pains, and reactions I’d withstood since a child. From ages 28 to 32, I would finally rack up several diagnoses thanks to a team of physicians at Cedars-Sinai who were willing to think outside the box, encouraging my instincts and trusting my knowledge of my own body.
Within a span of four years, I was diagnosed with Hashimotos, Dystautonomia – POTS, Mastocytocis, Vascular Ehlers-Danlos, Lupus, Sjögrens, and eventually, due to high dosage steroid treatment, Cushings.
While all of these diagnoses affect my life and some even put it at risk, one of them is a terminal illness. Most people with the subtype of Ehlers-Danlos that I have don’t survive their third decade due to arterial or organ rupture.
The moment the geneticist revealed what would likely be my drastically shortened lifespan, a high pitch sound began ringing in my ears as if a bomb had exploded in front of me. Fragments of my life, like shards of broken glass, seemed to cover the floor of the conference room at the hospital. I always had a premonition that I would die before my time, but I never knew that validation could feel so heartbreaking. My vision instantly began to blur but then narrowed, closing in on a tunnel. Everyone I loved and every dream I had ever dared to hope for filled that tunnel. However, a light blazed at the end of it. My heart had stopped years back, so I had enough near death experience to recognize the “other side.” Immediately, a clock started ticking in the back of my head. It’s incessant ticking drowned out every other sound.
The sound of that ticking clock has never once stopped. I have found ways to mask its volume, but I am unable to find its mute button. It grows louder with every passing day, driving me to work, create, and write at an untouched speed— loving and living with a velocity that knows no bounds while I still have the chance. That clock rules me; its unyielding rhythm dictates my every move.
According to the Kübler-Ross model of grief, there are five stages of loss: denial, anger, bargaining, depression, and acceptance. I have experienced all of these stages, though not linearly. Sometimes I think I’m done confronting a stage, only to be nearly obliterated from behind by a second or third wave of it. There are days that grief pours out of my eyes like an endless faucet: moments when the unfairness of it all utterly overwhelms me, rage filling my heart, spilling out into areas of my life I wish it wouldn’t.
There are days when I can be in a room surrounded and loved by hundreds of people, yet feel desperately alone in my personal experience. At times, even pre pandemic, it felt like I might as well be isolated on a deserted island, thousands of miles from civilization.
But there are also beautiful days. Magical moments doing what I love most, spent in the company of the people I love most. The darkness in my life has given me the ability to instantly recognize light. What might be a flicker to some looks like the whole sun to me. When the background is dim, color pops. Laughter is louder, happiness bolder, sunshine brighter, gratitude deeper, ability abundantly over-appreciated.
I know the full value of time because I’m running out of it. I know the full value of relationships because one day I will not be here to experience them in the same way. I know the value of human life because I could lose mine at any moment. I know the depths of gratitude because I know what it is to be without so much that goes unappreciated by most.
I wish there was a way to appreciate what you have without losing it, but I have yet to identify an illuminator to gratitude greater than loss. The trick is finding that appreciation while you’re still here. If you allow it, a terminal illness diagnosis gifts you a bird’s eye perspective of life. It finally floats you to a high enough altitude to see the full picture. Your priorities shift, and your vision sharpens. You see straight to the heart of people and things, suddenly speaking without reservation, making sure your love for people is heard loud and crystal clear.
Every encounter, opportunity, embrace, and moment becomes a possible “last”. You find yourself taking so many photographs, attempting to stop the clock by mentally freezing snapshots of the moments you wish could last forever.
That clock ticking, of course, grows loudest when I’m stopped by something out of my control. So you can imagine how my clock sounds at a full stop in a pandemic. For every one second in real time, it clicks at least thrice that; its volume sometimes reaches a deafening threshold. I have never once stopped myself of my own accord. It has always been my body that slams on the breaks, rendering me unable to move forward when I reach my limits.
In a break from the norm, COVID-19 has made me pull the breaks. Never once in my life have I put my foot down on my own will, but I have lost perfectly healthy, young friends to this awful virus. I have been told that, as immunocompromised as I am, I don’t stand a chance at beating it. Today marks 167 days since I’ve left my apartment. I live alone, so it’s been 167 days since another human being has been in my home, 167 days since my skin has felt human touch or a hug, 167 days without my friends of family, 167 days without the outlet to create, 167 days without an income. 167 days without the career and art I have built my life around and without the people for which I have consistently fought to leave a legacy for. Imagine what it’s like to be running out of time during a pandemic, losing 167 days of your life that’s already been sliced to one third.
Full stops aren’t new to the chronically ill, but the majority of the world feeling it with us is. In the beginning of the pandemic, it admittedly felt oddly comforting for our country to see life from the perspective that the chronically ill often do. Everyone looked at the world through the lens of thankfulness because they were experiencing that same loss of basic necessities and the connection to the people they loved that is so constant for people in my shoes. These losses resulted in so many heartfelt vows to seize gratitude to its full power when life and experiences finally resumed and returned. We may have been in isolation, but for the first time, I didn’t feel alone.
But with mounting pressure, rules preemptively lifted. Many have grown understandably impatient, stir crazy, and restless, even with far more freedoms than what the elderly and immunosuppressed have been afforded. The pandemic rages on, pushing the day further and further away that the immunosuppressed and elderly will be able to leave isolation. That tunnel I saw that fateful day of diagnosis is getting shorter, and the clock I constantly hear grows faster and faster. While I know many of you have more freedoms than I do and are far closer to “business as usual” than I am, you have your own dreams to manifest, too.
Four years have passed since hearing the words that would change my life forever. Even without the threat of COVID-19, any one of my organs could rupture anywhere from the next moment as I write this to my prescribed expiration date just three years and four months from now. While I very much plan on shattering this prospective timeline and living to 110, on the off-chance that I don’t, I have so much more to give and do. I have so many people I want to love, so many dreams I wish to see unfold. The majority of these goals cannot be met from the confines of my apartment in LA.
It is my greatest hope that my words have not led to sympathy but instead perspective, a perspective from someone who happens to be dying during a pandemic but not because of one. The curious thing is, you’re dying too. We all are. In fact, it’s the only thing we are born knowing for certain. You have a clock, too; mine just screams louder. We’re all living our own “dash.” This pandemic does not discriminate between the healthy, sick, poor, rich, or celebrity. It does not care. It wreaks havoc on all.
Please, wear a mask. Social distance. Protect our most vulnerable. Step back only to move forward together, and leave fewer behind. This pandemic prevents us all from safely and fully resuming the beautiful life that we’ve worked so hard to create, or prevents us from fully moving forward within this beautiful life that we’re all hoping to build. We all have so much to give, do, dream, and love. I want to see every one of you fulfill your authentic purpose ; I hope you’ll help me fulfill mine while I’m still here to do it.