Chapter Fourteen

“I’m not afraid of death; I’m an old physicist — I’m afraid of time.”

Biologics: A class of drugs that are made by extracting substances from a biological source to treat disease.

Immunosuppression: Using pharmaceuticals such as biologics or DMARDs – disease-modifying antirheumatic drugs – to suppress the immune system in an attempt to stop the immune system from attacking itself.

Prednisone: a steroid that acts like cortisone in the body to inhibit inflammation.

Lab Notes:

Biologics include a class of drugs called TNF-antagonists, such as Remicade, Humira, and Enbrel. The goal of biologics is to suppress the immune system to prevent it from attacking itself, but unfortunately, nearly 40% of patients do not respond to these treatments. What’s more, patients taking biologics are susceptible to potentially fatal infections, lymphoma and other rare cancers, lupus-like syndrome, and other side effects, including allergic reactions, injection site reactions, chills, weakness, diarrhea, nausea, rash, shortness of breath, chills, cardiac reactions, and more. 

For the nearly 40% of patients who don’t respond to biologics and immunosuppressants, they are then faced with not only the symptoms of their disease but the side effects of these drugs. Sadly, there have been 34,000 deaths from biologics since 2004, as well as one million adverse events, with half of those deemed serious.

Further, patients often end up reliant on prednisone to curb their inflammation when biologics and DMARDs aren’t cutting it. Known to many as a ‘miracle drug’ for its fast-acting anti-inflammatory properties, it has been dubbed ‘The Devil’s Tic Tac’ and leads to short- and long-term side effects such as weight gain, sleep problems, acne, increased sweating, slow wound healing, anxiety, depression, rage, nausea, bloating, dizziness, weakness, irregular heartbeat, infection, high blood pressure, thinning skin, a puffy face known as ‘moon face’, glaucoma, cataracts, osteoporosis, and more. 

It’s one thing to consider these drugs an important milestone in the fight against disease — they most certainly are. But they were never meant to be the final destination.


Miller's Planet

Sitting up on the rooftop patio in Kapahulu every night, wrapped in a blanket, drinking a cup of decaf coffee, became my religion and the only place I ever felt truly at peace. Though the sounds of the city echoed around us, I paid attention to the tall evergreen-like trees that stood up alongside our building, swaying in the breeze. I propped my legs up under a pillow on another chair and leaned my head back and looked out into the universe, focusing on certain stars, often finding a shooting star race across the sky — my heart would jump, my eyes widen, and I’d excitedly say to Sean ‘did you see it?!’

I’ve had a love affair with the universe since I was a kid; always feeling drawn to the night sky, longing for what could be out there, overflowing with gratitude for what I do not know.

The night sky has always been comforting for me; staring into the darkness and the speckles of stars painting the blackness made me feel so small, and I welcomed that smallness – throughout the rest of the hours, the heaviness I felt within my body was so consuming that those nighttime escapes into the abyss reminded me that I am only a small bundle of energy packaged into flesh and tissue that sometimes doesn’t function properly – but under the night sky, I existed under all this beauty before me.

Being up there — looking out into space — I felt free.

When I was up there looking out into the stars, the infinite nature of the universe reminded me of how finite we are, and how unlikely and special it is to be temporary, and have the privilege to exist at all. In that infinite universe that stretches across never-ending space filled with stars and nothingness, we are assured of one thing: one day, we will cease to exist; like a star that has outlived its shine and propels into blackness, as we look up into the vastness with our telescopes and make a wish on its death. We smile and point as the flash of our long-lost relative in the sky takes its last flight; something in our carbon, oxygen, and nitrogen makeup becomes enlivened by our twinkling twin taking her last breath.

We don’t do that when the beings we love on this earth perish.

We know that although time is relative and can be stretched and squeezed in the vastness of the universe light years away from where we exist, on this star that we exist on, it is finite. We celebrate those shooting stars that happened years ago, but we can just see now, on this little blue dot, where time starts and stops when our hearts do — and it turns out that all that really matters is how we spend our time in between those moments.

One night in early April, Sean and I watched the movie Interstellar. As Cooper and Brand explore another dimension by way of a wormhole, time passes more slowly for them, especially when they land on Miller’s planet, where an hour there are seven years on Earth, or Mann’s planet, where a day is sixty-seven hours long followed by sixty-seven hours of night.

The mission that Cooper and Brand set out to do is a testament to the invincible nature of the human spirit. They understand the gravity of their decisions to leave, but it is not until they are up in the darkness, realizing that they may never come home, that time catches up with them. They are paralyzed in the slowness, seemingly infinite amount of time in another dimension, and when they return, suddenly, they are propelled into the finite nature of the earth. Their loved ones have aged, and while they were in the darkness searching for salvation, they have ceased to really live.

Those of us who have lived or are living with chronic or terminal conditions have a funny concept of time. We go through the motions, from appointments to lab work, to alternative therapies, to bed when it’s just not happening that day, and rinse and repeat. Then out of nowhere, we have these moments that stop us in our tracks. A realization hits, that, on this particular night in April 2015, after watching Interstellar, turned into a full-body sob that started in the immobilization of my feet, worked its way up to my throat, and exited through my wide-open mouth cry, swelling my face and crippling my eyes with tears that couldn’t be tamed with tissues or comfort.

In that moment of desperation, I realized how much time passed since normalcy and what life I missed out on as the world has kept spinning at its own pace and loved ones with good intentions carried on with their own rush.

That night, I realized that Crohn’s disease has been my other dimension. My Miller’s Planet. My place where I have aged internally, but externally still appear young. At that point, in those thirteen years of my life, all decisions revolved around the complexity of my dimension. I sat in my mind and rationalized solutions — my spaceship’s auto-docking mechanism malfunctioned several times, and I searched and searched for ways to manually force it into cooperating. I chased the station as it spun out of orbit, forcing my ship to attempt to spin at equal speed, and meet up and join the thing that will bring it optimal health, and dare I say, normalcy.

While I did that, time passed. I emerged out of the wormhole just long enough to take a peek before I had to go back in to work on my ship, and I looked out into the world. I caught a glimpse of what I missed, and it shook me. It stopped all waves of my internal communication that moved toward solutions and left me in a state of paralysis on the couch followed by a long period of staring at the wall, feeling like a rag doll in my Sean’s arms. Tell me what you’re thinking at this moment, he plead. There weren’t words, there was just a painful realization that couldn’t be articulated. And it was all centered around time. Dr. Brand articulated this painful fear perfectly when he stated, “I’m not afraid of death; I’m an old physicist — I’m afraid of time.”

I am not an old physicist, yet I, too, am afraid of time.

Yet the one constant that I knew to be true, that has traveled through my dimension, co-piloted my malfunctioning ship, and willingly become lost in the wormhole alongside me is Love — and as Brand says,

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