I sat across from my 10-year-old niece at dinner last night. It was New Year’s Day, a fresh year lays full of promise, a blank slate before us, and her tired face was a blessing to see. She was exhausted from a cheerleading practice; she throws herself with such enthusiasm into all she does. The conversation came around to how she may not continue playing clarinet with the band in school next year, I nodded and smiled at her. I can imagine how difficult that decision is for her to make. She’s a gifted musician, and I love to hear her play. It reminds me of when I did, but I can hardly fault her for choosing other priorities. She takes the early bus to school nearly every day; she has theatre or music or cheering practice after school as well, plus homework and concerts and competitions and performances.
Then someone said it – “are you sure you want to give up?” It’s an innocent phrase right? Surely, it was just an expression of encouragement for her to keep developing her many talents.
“She’s not giving up”. The words just tumble from my lips now, sure, this was a different application, but it’s the same argument. “She’s just choosing, quite wisely, to focus where the most important things are for her right now”.
No one argued in the reframing of the sentiment; my little Rockstar Niece doesn’t give up.
Neither do my patients.
Oh and by the way neither do I.
In the time that I’ve worked in hospice and end-of-life, my patients have never come close to anything I would call “giving up”. They fight, but they fight for something that matters to them, where they are. When your illness is terminal, when the end of your life is not a theoretical “someday” event anymore but a quickly approaching sooner-rather-than-later reality, what you choose to fight for often changes very quickly. When a disease that is ravaging your body changes your day-to-day function, buying more time isn’t always the gift it once was. You don’t always get to buy time on your terms.
When that time you buy with treatments doesn’t look like the life you want to live, if that time is wracked with pain, trapped in a bed or constantly chips away at what you hold as your personal dignity – time is no longer the thing you fight for.
That doesn’t mean you give up though. You fight for love, for closure, for dignity and respect and control and comfort. You fight for all the things maybe you didn’t have during other parts of your fighting. You fight for whatever now makes sense for you – and you fight hard.
For those of us that walk that last mile with these amazing people, we fight their fight on their terms as much as possible, because this is their fight.
So please, stop saying “don’t’ give up”, to those who choose a different priority. Maybe you could just ask them what the most important things are that they fight for now.