let’s talk about hope
Today I said goodbye to the palliative care team I’ve been working with to navigate the main symptoms I deal with as a terminal person. I met with them every six weeks for symptom management and a great discussion about all that I’m enduring and how to navigate it.
Today I expressed a lot of frustration when it comes to the bright side thinking and celebration that people do whenever I have a clean scan or discuss my cancer experience with me. It’s a huge burden on me to navigate conversations skillfully surrounding hope. A lot of people overdramatize their positive reactions which makes me feel very like I need to perform or offer some sort of success story. I get frustrated because I shouldn’t have to hold that pressure on top of the immense pressure just to get up each day.
My palliative care team pointed out that I could be asking people “are you saying that for my benefit or for yours?” Maybe asking this question can open up for a more vulnerable conversation surrounding either my grief or yours. I would hope it would.
I think when people look on the bright side, I have this ick about it. Mostly because I feel like I’m being told I’m crazy for not being not excited or that it’s weird that I’m still grieving even during a win. I think the difference for me is that even though with a clean scan there is some joy, I still feel a heaviness that weighs on me about the looming terminal diagnosis that hangs over me all the time. I feel crazy in those moments for even having a reaction of “…but I’m still dying.”
I just want the acknowledgment I think. Maybe more of a “okay that’s happening and it’s great, but what’s next? What can I do to support you in the next two months until your next scan? What can we do to stuff joy into your life?” I think that sounds like what I need from others - some sort of collaboration on trying to find hope for the next steps. Planning art days, booking a class, going somewhere cool, getting a visit, things that don’t feel totally absent of moments to grieve, but also allow me the space to engage with others about future.
I think the thing is with the positivity police, as I like to call them, is it kind of shuts down my experience with everything that’s happening for me. It just doesn’t sit right with me to tell someone how they need to process the thing they are going through positively all the time. I’m allowed to experience the depression and grief and devastation of this cancer diagnosis. I’m allowed to be in the shit. I’m allowed to hold the negative. That’s my right. It doesn’t negate the hope I have. I still hold space for hope. It’s just a smaller space right now. Talk to me about hope once I hit July 2025 or Jan 2026 if I’m still having clean scans and I bet I’ll have a different outlook. But for now, let me hold this how I’m holding it. So much of what I have been through is still SO recent. So much of this experience is still new to me.
So let me be a sad sack. Let me have my moments. But also help me find a way to find joy by supporting me in my quest for hobbies or experiences! Visit me! Call me, text me, anything! Give me reasons to hope for some future by engaging with me.