I know I’ve been remiss in posting, and I wish very much I could say it’s because I’ve been so busy creating amazing and exciting book campaigns and creating a plan to hit the NY Times Bestseller List in July. I still want to, don’t get me wrong, and I still plan to at least give it ago. But that’s not why I’ve been quiet.
I guess you could say I’ve been doing nothing. Nothing. Let me explain.
I’ve said to many people when I started working with Paws into Grace two years ago it was like my career and work finally made sense. I liked working in a clinic, I liked the day-to-day stuff, but only two jobs in life ever touched my soul and felt as close as one could come to a calling: writing, and veterinary hospice. Stepping into hospice work was like buying a new pair of leather shoes and finding them already perfectly worn in.
If you recall, I took it a step further when I began speaking on the topic at various Ignite talks, the first one being in January this year at NAVC:
Then later, in San Diego in February:
Putting those two talks together forced me to really dig into why I thought this work was so important- first, I realized, we can do a lot to help people understand the process of grieving a pet.
Then, I realized losing a pet is in itself a really important lesson in how to lose a person, or more importantly, how to help them gracefully experience the end-of-life process. I really, really wanted to share that message.
I remember a lot of things about that night at Ignite San Diego, namely about how I said that all people should hire me so their kids wouldn’t stick them in a nursing home later in life because they were too scared to deal with them. I pointed at my parents and said, “See? Aren’t you glad I made this promise to you guys in front of like, 200 people?” And they laughed, because we knew that was all a long time away.
It all happened very suddenly: the fall, the seizure, the diagnosis of an inoperable brain tumor. One day, my life was filled with the usual concerns, getting annoyed with pseudoscience on the net, figuring out Teacher Appreciation Week. The next day, I forgot everything except this: My mom, still young, beautiful, and full of life, looking at the same diagnosis that made Brittany Maynard a household name last November. It is perhaps one of my worst fears, this particular beast, and now it has invaded someone I love more than words can adequately express. The person who, in other circumstances, would be the one I called for support.
Now she was looking to me, and then it all made sense, this need to understand the importance of hospice and advocacy and learning to let go gracefully. I wasn’t meant to help other people understand the difference between living poorly and dying well. I was doing all of this preparation, whether I knew it or not at the time, for my own mother.
In the space of two weeks, I moved my parents into my house, earned frequent parking points at the hospital, and had to dig deep into everything I ever stood up for and ask myself if I really meant it when I said I thought people should change how they dealt with illness and end of life in their families:
- Would I help someone honor their own wishes to say no when everyone in an authority position was pushing for treatment? It seems like oftentimes it is easier to do all the treatment than to say no and risk upsetting loved ones who want you to try it.
- Would I be honest with my children in an age-appropriate way or just kind of try to avoid it for a while? Use the old la-la-la-everything’s-fine approach our family has relied on for generations?
- Could I bring this whole experience into my house, ask my husband and my children to take on this really intense experience, when it would be a lot easier on them- in the short term at least- to keep my parents at arm’s distance, in their own home, in skilled care?
The two weeks during the diagnosis phase was an unending slog up and down the linoelum floors of the hospital, trudging from one cramped waiting area to another: CT. Neurooncology. Neuroradiology. Neurosurgery. Each appointment took an emotional toll that far compounded the physical one, leaving mom too pooped by the end of the day to do more than go to sleep. Waiting rooms filled with other seriously ill people nervously picking at the fraying vinyl upholstery, doctors too aware of the gravity of the diagnosis to be able to offer a smile.
My mother was so upset at the prospect of poorly effective radiotherapy she didn’t want that she could barely speak after the appointment with the radiologist. He had recommended six weeks of daily radiation and chemo, tied to those halls and the stale air. Glioblastoma, a poorly researched and dreaded cancer- even in the world of oncology, it’s a bad one- has had few treatment advancements in 25 years. Treatment doesn’t cure the disease, just kind of kicks it down the line a little.
“And if we choose not to do the radiation?” I asked.
“You could do nothing,” he said, “But I don’t recommend it.” No one did, but nonetheless that was exactly what Mom wanted.
So we did it anyway, leaving through the doors of the hospital one last time into the cool evening breeze of the evening marine layer rolling over, before calling in the ‘Nothing’ that is hospice. So far, Nothing has included the following:
- Watching hot air balloons fly by in their sunset flights
- Getting through all the Harry Potter movies
- A comprehensive plan for managing every symptom, every discomfort
- Greeting the children every morning and tucking them in every night
- Trying every flavor of macaron at the local French bakery (lemon = best)
- Getting our nails done
- Going through old photo albums
- Driving to the beach
Brody, exhibiting that strange instinct most dogs seem to possess, hasn’t left my parents’ side. He’s been so protective, in fact, that he came barreling out of their room last night to bark at me when I got up at 2 am for some water.
My mother has chosen to die well instead of living poorly. But really, I can’t call what she’s doing right now dying. The walls of the hospital, filled with fear and extended wait times and the ever-looming spectre of illness, feels more about dying. She is living. Each moment, each breath of spring air, each hug, is imbued with a gratitude and a joy it wouldn’t have had in a different situation.
I don’t believe one person’s tragedy is any greater or less than anyone else’s, no story more worthy of being told. But I do hope that in sharing this one I might reach someone who is struggling with a similar situation or just looking to understand why a loved one may have made the same choice.
We’re terrified, but we’re ok. We’re devastated, but happy. I have an incredibly high tolerance for stress right now but Rubio’s running out of pico de gallo leaves me in tears. We are doing what we can and continuing what routines we are able to do. We are together, and that matters most.
We are doing nothing but living, and that is enough. It is, in fact, everything. And this Mother’s Day, we’re having a hell of a celebration.