Hang in there

When Adam first told me that he had kidney disease we hadn’t been dating long. But long enough that we were in the phase of the relationship where I was constantly acting out in ways that should probably have warned him off. It was a time of much boundary-pushing, crying in restaurants, soft ultimatums, and serious talks. I can joke about this now because we made it to the other side. But it was in the spirit of this season of disclosure that Adam told me about this polycystic kidney disease (PKD), what that would mean, and that eventually, he would need a kidney transplant. And that if we were to carry on in our relationship, it was important that I accept this and be prepared to stick it out with him.

My thought, I remember clearly, was “what kind of monster says they can’t stick around when the person they love gets sick?” quickly followed by, “am I that kind of monster?” Of course I would hang in there, I said. I loved him.

And then I Googled PKD. I saw the images of kidneys with PKD, covered in puss-filled cysts. The stuff of nightmares. I read about the slow decline in kidney function, what the symptoms were, the search for an organ, dialysis, the transplant. If I was looking for a dealbreaker, I didn’t find one. I’d hang in there. I loved him.

We wrote our own vows when we married in 2015. I don’t remember them well, but I do know that I took care to include a bit about ‘in sickness and in health’. Everyone commits to this when you take on a life partnership. And no one knows what that might mean, which is part of what makes it so powerful. Unconditional commitment. Come what may, whatever that is. And that’s still true for us. Any number of other illnesses or disasters might have, may still, befall us.

The difference, I guess, when your loved one has a chronic illness, is you’re not committing to stand by for something that might happen, but for something that already is happening. Adam was largely asymptomatic for the early years of our partnership and marriage, but he always had PKD. And that meant we always lived with it looming on the horizon.

I imagine Adam’s consciousness to be like the Mariana Trench. The weight of his illness, I believe, allowed him to plumb extraordinary levels of introspection, but all that peering into the abyss also damaged him. He had to be reminded to come up for air. And always present, his father’s death, swimming alongside him.

Still, we didn’t talk about it much. He was remarkably incurious for years. For a man who will devote 18 hours to researching the best toaster oven, his ability to avoid vital health information was impressive. He saw the nephrologist once a year, his kidney function numbers dropped by single digits and the menace kept its distance.

Over time, it started to reveal itself. Adam’s kidneys ballooned out from his flanks, his shirts grew tighter. His feet hurt more. He was tired, always. He was cranky, often. I believe it contributed to his depression in subtle but significant ways. And of course, we were also living our ordinary trouble-filled, joy-smattered lives. The world raged on, our children transformed and grew, we loved our friends, family, and community fiercely and we dragged our tired arses from bed each day and lived our lives, just like everyone else.

In 2019, Adam’s numbers began to dip. I went to the nephrologist with Adam and was encouraged by his upbeat prognosis: Adam was a very good transplant candidate, we would likely find a donor, hopefully, a living donor, we just had to wait for the numbers to dip low enough to get him on the transplant list. I researched symptoms and often had to remind Adam when one of his many maladies would strike that it was probably related to his kidneys: diverticulitis, hernia, shortness of breath, blood in the urine. Travelling, sleeping, walking, and intimacy all became more difficult.

I hung in there, but I was scared. Not of the actual illness, exactly, that was predictable. But I was afraid of my ability to care properly, that I would grow to resent Adam and his growing pile of meds, his lack of energy, his strange body. I wanted to be compassionate, and loving, and patient, and kind. Instead I felt fearful, aggravated. I talked to my friends about it and we all agreed it would be transformative. I thought that sounded terrifying.

Meanwhile, I researched and made a spreadsheet of local transplant programs. We learned about the nephrectomy and were mortified by the idea that he would be walking around with no kidneys for a month or more. Adam started to wrestle with the prospect of asking for a kidney, and engaged in a long and appropriately narcissistic existential crisis.

And then it was March of 2020. COVID bloomed. We worried and cried and wondered what this might mean for us, and for all of us. We constructed arcane measures of grocery retrieval and sanitation, went for walks in the neighborhood each night, and waited or wished for things to get better. In June after George Floyd was murdered we protested, and later sipped cocktails while helicopters buzzed overhead. And in July, Adam grudgingly went to the Emergency Room with fever, pain, vomiting, exhaustion. His kidney was functioning at 7%. He was admitted for three days and started on dialysis. Mid-pandemic, racial uprising, the time had come.

In August we went out for a patio meal, our first outing in months, to celebrate our five-year anniversary. At dinner, I suggested we each share what we had learned about the other, what surprised us, after five years of marriage. We both said we were surprised by the other’s strength.

Adam was proud of me, I had entered into therapy and was working through some long-standing addictions and afflictions. He didn’t think I would be capable of so much growth, introspection. I was proving to be more steadfast and resilient than he would have predicted.

I was surprised at how Adam had been managing everything to do with his kidneys. Known for his procrastination and head-burrowing abilities, Adam was actually taking care of business. He scheduled dozens of medical appointments, navigated the Kafka-esque insurance industry, rose at dawn to report to dialysis, and maintained a heavy client load, all remotely, throughout it all. All the caregiving I had feared proved mostly unnecessary because to both our surprise, Adam took care of most of it himself.

Last month Adam had his nephroectomy, both kidneys removed. When I finally saw him in the hospital, he was in terrible pain. The kind of pain where you are absent from yourself. So I sat with him. I rubbed his legs, and feet. I held his hand. I said very little. He tells me that this was the most important thing I did. I sat and witnessed his pain, and let him endure it, without judgement or trying to fix it. I was simply present.

This, it turns out, has been my role all along. To be present. And that’s what it always is, in love. Be there. Witness. Hold fast. See your beloved, and don’t look away.

This isn’t easy for me. I have issues with paying attention, with focus and completion. I like to start things and make big changes. I’m spontaneous and mercurial and I don’t like waiting. But over the past eight years, I have been forced to show up for love over and over again. Not always with grace. Not even willingly. But I did. As the procedure drew near, we had to put most things on hold, and it’s been a challenge. But I’ve learned to hold off on plans, to sit tight. To wait.

Today, on the eve of Adam’s transplant, I couldn’t focus on anything. So finally I sat down and wrote this. I’m trying to pay attention, be present, take note. Because here I am, with all this behind me, and everything that comes after tomorrow unknown and new. I won’t look away for anything.