One year ago today, Derek left the hospital. He was weak, yellow, about 30 pounds lighter than when he went in, but he was alive. For the first time in many years, he had a fully functioning liver. I left the hospital first so I could go to the grocery store and stock up on food. I had been given strict orders to feed him by all of his doctors and nurses. In the hall I saw one of Derek’s nurses and she grabbed me for a hug. The nurses were so excited that we were finally going home. I started to cry, mostly because I was afraid to be home with Derek, to be the one in charge of making sure he ate, got all his meds, drank enough liquid; I was the one that would need to make the call if things seemed wrong. “How will I do this without all of you,” I whispered. “What if I fail?” She smiled and held my shoulders. “You are ready, you’ve been a good patient and a great caregiver right alongside all of us. He needs to be home to rest, to get better. You’ll know what to do.” She packed up every single thing she could for us–they’d throw it all away when the deep cleaned the room–little cups for his meds, gauze, the pad from the bed, gloves. I left, hoping I had also squirreled away enough tips for how to be a good nurse, how to be firm but gentle, how to handle anything that came my way and still be calm.
Those first few days were really hard, for both of us. While he was medically ready to come home, there were aspects of his recovery that were a mystery to both of us. Why did the bile suddenly stop draining into the bulb? Why was fluid leaking from the hole in his abdomen? Why was he still jaundiced? Derek had been incredibly uncomfortable in the hospital bed, but our bed proved to be too comfortable. We had a hard time sleeping in the same bed at the same time; a month into my own recovery, I was still only able to sleep in one position and I feared I might nudge him or disturb him. (I am notorious for giving him a slap in the arm after he’s just gotten a painful shot. I don’t know why I do it, I am just inexplicably drawn to the area that needs to be avoided. It’s a curse.) At times I would think, “So this is our life now, this is the way it will be.” As soon as I got used to something new and daunting about his care, it would suddenly improve, and little bits of normalcy would return without fanfare.
A year later, my memory fades a bit. I’m thankful that we took the time to write about what was happening, as it happened, and then shared it with all of you. I don’t want to forget any of it, as painful and scary as our experience was, I want to remember as much of it as I can. Many times in my life I have turned to a quote from a Tom Robbins book I read back in high school. It has always reminded me that even when I am feeling my worst, that someday I will recognize the benefit of having a crappy time. It seems even more relevant to me now.
“Perhaps a person gains by accumulating obstacles. The more obstacles set up to prevent happiness from appearing, the greater the shock when it does appear, just as the rebound of a spring will be all the more powerful the greater the pressure that has been exerted to compress it. Care must be taken, however, to select large obstacles, for only those of sufficient scope and scale have the capacity to lift us out of context and force life to appear in an entirely new and unexpected light.
For example, should you litter the floor and tabletops of your room with small objects, they constitute little more than a nuisance, an inconvenient clutter that frustrates you and leaves you irritable; the petty is mean. Cursing, you step around the objects, pick them up, knock them aside.
Should you, on the other hand, encounter in your room a nine thousand pound granite boulder, the surprise it evokes, the extreme steps that must be taken to deal with it, compel you to see with new eyes. Difficulties illuminate existence, but they must be fresh and of high quality.”
― Tom Robbins Even Cowgirls Get the Blues
In honor of this anniversary, I am proud to share a few before and after photos of Derek. I made him recreate a couple because the difference is shocking. I hesitated to take photos of him during this experience because, who really wants to remember what they looked like when they were at their worst, but I imagined a day when he was healthy again and that the photos might be inspirational to someone facing a transplant. Every day he gets a little bit better, a little bit stronger.
If you somehow found this blog because you have PSC and you’re scared of the transplant, afraid of what life will be like after, I can’t promise you that everything will go perfectly, it certainly didn’t for us. But I can tell you that there’s a very good chance you will finally get your life back. The road to recovery is hard and painful, but it gets better. One thing we’ve both learned from this experience is that we are way stronger than we thought we were. And you will be too.
And a note from Derek to thank all the doctors for their wonderful work: