Love’s Last Breath

“3 years left. So that’s 365 days, times three. Around 1000 days give or take. The next day, its 999. But then you have to remove 6 months of being unwell, and dying, that removes a huge chunk.” He sighed, his expression turning more somber. “Every day you feel like you waste time. You feel like you should be out and doing things but then again, you don’t know what you’re supposed to be doing.”

My friend Will was told that he had asthma. Countless doctors’ visits resulted in a proliferating repository of pills and inhalers, and even with his macabre descriptions, the physicians were committed to this diagnosis.

Sometimes, his attacks are foreshadowed by a surge of lightheadedness, akin to inhaling a balloon of nitrous oxide, but without any of the good parts. If in public, he scrambles to find a private corner or a bathroom to take refuge in, just as he feels the rings of his trachea cinching his airway shut. It feels as though something is caught in his throat, so he forces himself to cough in order to expel the culprit. He coughs so violently that blood spurts from his insides and splatters a cruel Pollock on the toilet stall. His diaphragm begs for relief and his lungs, especially the left, feel as though they’re being stabbed relentlessly, mercilessly. His entire body burns, like he’s just risen from the grimmest nightmare, and then almost instantaneously, everything turns to ice.

That’s if he’s lucky. Other times, without warning, he is pulled from the depths of sleep by invisible hands strangling him to death. Still asthma, right?

When 19-year-old Will was finally told he had idiopathic pulmonary fibrosis, he didn’t know what to think. It was a foreign concept, not only to him, but to most of the medical professionals he’d seen. A disease, reserved for elderly construction workers, coal miners, and smokers had somehow hijacked this innocent body and was sadistically making its way through his lungs, leaving alveolar carnage in its wake. An almost impossible fate, but in the words of his trusted pulmonologist, “If it can happen, you shouldn’t be surprised.”

After receiving his prognosis of three years, which was constantly changing but always terminal, Will went through what resembled the typical stages of grief. In the beginning, he deliberately drowned out the voices of doctors to protect himself, but would bring his dad to be his ears. After each appointment, in his caustic yet cold way, his father would say, “You’re a boy, don’t show your weakness.” Will warned me that I would hate that, before he even said it. Nevertheless, he found it reassuring. At some point, he fell into a Blue Swoon (he hates the word “depression”). For a while, he could not bring himself to escape the safety of his bed and the blanket of pity that tightly cocooned him. He wanted to want things, and do things, but somehow, he wasn’t able to. He would go without food for days. Sleep evaded him.

With time, Will has come to begrudging acceptance, even though his future will look unlike anything he’s ever expected. Still, he’s making plans for the future and applying to university in the fall. I would be remiss, however, if I ended Will’s story here, because in reality, this is not the only illness he is suffering from. 

His comorbidity? 

A broken heart. 

He describes this as the sequela to his original diagnosis, but at the same time, blames himself more than his disease. At the core of his being, Will desires to shelter his loved ones, especially his then girlfriend, Sydney. Not only was he grappling with this life-altering news and how it would affect his body and mind, but he was also consumed with fear that he would not understand his feelings soon enough or deeply enough to be able to verbalize them to her. Every day, he thought there was a different “best” way to handle things. Maybe processing this alone would be quicker, and then he could devote more time to focusing on their relationship. Or actually, maybe figuring it out together wouldn’t be so bad? But…the guilt of frightening her, or being a burden on her! With a world of possibilities and a universe of consequences, Will felt overwhelmed, and his reaction, in the most human way, was to shut down. But this reaction, as natural as it was, is what Will feels hurt his relationship the most.

I wondered what the love between them felt like. He told me to brace myself for the tears that soon poured down his face and enveloped each word he spoke.

“I feel literally invincible. I feel safe. I feel heard. I feel cared for. I want to tell her everything I do. I feel like I’m constantly going down a rollercoaster.” Words tumbled from his lips, even ones he admitted sounded quite delusional. “I can’t think of one thing I couldn’t forgive her for. Without exaggerating, she could kill one of my brothers, cheat on me 5,000 times and I would still love her.” I could tell he was both trying to do justice to their love while at the same time trying his hardest to explain to me, a novice in matters of the heart, how grandiose and all-encompassing this feeling really was. “Whatever you think it is, it’s even better. I want to shout to the world how I feel about her, and I will cry, but I want to shout it for everyone to hear.”

Listening to his words helped me better conceptualize the depth of Will’s feelings for Sydney, and I learned that opening the door to such profound love leaves the possibility for such soul-shattering sorrow. One day, when Will was faced with one of his harrowing attacks, he decided he didn’t want to do anything to slow its course, or prevent it from happening. On one hand, he was curious to see how far he could push his limits, how much pain he could take. On the other, his heart was hurting so badly that he craved for the emotional strife to be replaced with “Please, anything else.” 

He assured me that this was a one-time thing; however, the pain of losing his person continues to be debilitating. His attacks are exacerbated by waves of crippling anxiety, which have multiplied in frequency and severity since Sydney and he went their separate ways. “Thinking about never seeing her again, thinking about her not loving me, thinking about her being with other people, about her moving on—it makes me panic daily,” he says. “Once you’ve projected yourself to live with someone and die with them, it’s hard to think that you’ll go through things like this alone.” Then he added slowly, but rather definitively, “If I didn’t have hope we would get back together, I don’t think I would get a transplant.” Whether or not this may be the same decision I would make, it is how he feels. It must be absolutely visceral. He would quite literally die, rather than live without her.

Will wants to survive, and this is the driving force as to why. Be it “young love,” overly idealistic, or even unhealthy, this is the goal that he has. This is the thought that wakes him up in the morning. This is what keeps him from slipping back into the Blue Swoon. Through the course of his illness, Will was surprised to learn that he is not as strong as he thought he was. But somehow, he has found something to grip onto, so tightly that he would bet his life on it. Would you take that away?