September 9, 2016
My wife and I used to joke about how much better we were than other couples, how we never had the petty fights and misunderstandings that everyone else seemed to be having. Together we had weathered layoffs, a cross-country move, multiple hospitalizations from my cystic fibrosis and the housebreaking of two terrier puppies.
Yet somehow we always managed to come out stronger than before. Our love was indestructible.
Then she threatened to leave me six weeks after I had a double lung transplant.
When you’re being evaluated for a transplant, there are a lot of things the nurses and medical professionals tell you over and over again to drive home the significance, to make sure you’re truly prepared, and probably to keep you from suing them later.
There is a good chance you may die, they tell you, either during the surgery or while waiting for it. They show you pictures of how physically wracked your body is going to be in the days after the procedure. They give you documents explaining that you may die, what the cost of prescriptions will be and how high the risk of death is. They explain that you’re going to be allergic to grapefruit and turtles afterward. For a while, you won’t be able to lift anything heavier than a gallon of milk. And, oh yeah, death is a distinct possibility.
There are also a lot of things the medical professionals don’t mention: the stench of stale milk emanating from the nutritional supplements stacked in a corner of your rented bedroom, the wild mood swings, the muscle spasms, the sound an oxygen tank makes when a valve breaks at 2 a.m. (like the inside of a tornado), and what it feels like when antibiotics turn your colon into a water slide.
None of the pamphlets mention the psychological toll of waiting to die or of waiting for (even grimly rooting for) someone else to die so that you can get that person’s lungs. They don’t explain how not to feel like a monster about that. No one tells you that the physical scars are the easy ones.
My wife, Monica, knows this all intimately now, better even than I do. While I was high on anti-anxiety medications and cannabis-based appetite stimulants, she was the one who had to remain clearheaded enough to clean up after me and keep us rolling in buckets of expensive prescriptions.
She didn’t have the luxury of mentally checking out, the way I did. She would spend her mornings dealing with the gruesome symptoms of my death spiral, and then spend the afternoons trying to do her day job from my hospital room.
Monica and I had bought a home in Albuquerque about six months before my lungs decided they no longer wanted to be lungs. There is nowhere in New Mexico where you can get a lung transplant, legally or otherwise. The local cystic fibrosis clinic worked in tandem with the transplant team at Stanford Hospital in California, summoning information and X-rays and then, when things really went off the rails, me, via emergency airlift.
Monica spent the first two weeks sleeping on a cot in my tiny hospital room, both because I was a disaster and because she didn’t have anywhere else to go. In between consoling me and checking in with the doctors and corralling the parents and coordinating with our friends to drive our car and all of our stuff out west (we were allowed only a single carry-on each during the airlift), Monica also had to find us a cheap apartment in one of the most expensive markets in the world before I could be even tenuously released from the hospital.
We had to stay within an hour of Stanford Hospital. I wasn’t going to be allowed to go back to Albuquerque unless I became significantly less almost-dead.
Bills began piling higher on our makeshift dining-room table, a rickety card table from Ikea. Monica kept working, fund-raising and taking care of me. Two months later, I was on six liters of oxygen while sitting still. I could barely eat. Three months after that, my wife was bathing me like a child as I shivered and huddled in the tub trying not to have a panic attack.
Monica had known about the cystic fibrosis since our third date, about the possibility of a transplant since shortly after. We had made it through some rough exacerbations and pneumonias before, argued with insurance companies and hospitals. We thought we could handle anything the transplant could throw at us.
All the papers and preparation in the world, though, can’t get you ready you for how radically life-altering the transplant process is, how fundamentally less than human you become while waiting and wasting away. No brochure explains what that does to those watching you.
Seven months after arriving in Palo Alto, we finally received the call: An organ donor of the correct size and blood type, within an acceptable distance for rapid transport, had died, and I received my double lung transplant, a nine-hour procedure that went well.
Within a week of surgery, I was out of the hospital and back in our apartment with only Tylenol for the pain. We had the respiratory therapy company collect the oxygen tanks and tubes. We tossed all the nutritional supplements. Things were finally getting back to normal.
Except we still couldn’t go home: We needed to stay near Stanford Hospital for at least three more months. I still couldn’t walk — my leg muscles had atrophied from the months of falling lung capacity and bed rest. And my new lungs still needed to be broken in. I needed physical therapy to learn to breathe again, to function as a human being.
I was still only half a person.
“I don’t think I can do this anymore,” Monica said.
Monica was a teary, snotty mess the night she blindsided me with the news that she may have to leave me if I didn’t get healthier faster. It was mid-October, less than two months after the transplant.
I was more terrified in that moment than I had been at any time during my hospitalizations or at any time they had to cut me open. The world itself seemed to stop. Despite the 20 pounds I had gained, the 6-foot-2 frame I had finally filled, I felt small and helpless. She was towering over me, crying, sniffling, trying to explain.
She had already bought a plane ticket home.
I was wearing new pajamas. I had a pile of pills on the table, a window open to the street at my back. I could hear the cars at the light: braking, stopping, going.
After my mother flew in to relieve her, Monica left for New Mexico. I spent those next days and weeks feeling wounded, incensed. I tried to distract myself by building a haunted gingerbread house for Halloween but couldn’t help dwelling on Monica’s betrayal.
“How could she?” I ranted to myself, smoldering. “Who does something like that?” I fumed as I applied icing to the roof. “Do I have to wait until Halloween to eat this?” I wondered. (I was still on a lot of drugs at that point; it was hard to stay focused.)
Monica and I didn’t talk much while she was gone. Once I knew she was coming back, though, I began deciding what I was going to say to her, how I was going to explain how hurt and upset I was that she would simply abandon me after everything I had gone through.
And there it was. I hadn’t gone through anything. We had. Together.
Every problem my waning health presented Monica had to handle twice over, worrying about me and worrying about her life after me if it all went sideways. Every time someone told me I was going to die, she had to sit there silently, taking it in.
I could petulantly shrug off all the dire news and flip to the Cartoon Network, but she didn’t have that option. She had to deal with the information, the issues and the repercussions, acting as nursemaid, housekeeper, chauffeur and lawyer for me — the man who was supposed to share her life, not consume it.
“I don’t think I can do this anymore.”
Her words haunted me for weeks, but I was wrong about them. They weren’t an ultimatum. They were a proclamation of defeat. Monica needed a break from doing the impossible. Her hasty retreat didn’t mean she was done with me. It meant that she was as broken as I was. We had had a misunderstanding.
My wife and I don’t joke about how great we are anymore. We realize now how precarious, how fragile a claim like that really is.
Our love may be indestructible, but we sure as hell aren’t.