Chronic Comrades Volume 2

It’s been over a year since I wrote the first entry about chronic comrades, a group of loves ones I brought together to talk about chronic conditions. We’ve continued in the last year but my notes on what we’ve discussed have not. In many ways, it’s hard to know exactly what to share when so much is so personal yet I also think it’s important folks talk more about what’s hard in this life and what true care can look like. With that in mind, I wanted to share some quick notes from our 1 hour turned into 2.5 hour call today:

• Treatment change of any kind can often be exhausting, scary, destabilizing and bring up a range of emotions from extreme hopefulness that something might “work” to questions over “why can’t I just heal myself” (internalized ableism).
• While we can each believe deeply in improving access and deep care for one another, it can remain very hard to receive it.
• Some changes and opportunities with work aren’t always worth the cost of a full life and a focus on health (mental and physical).
• Changing abilities in either direction can be hard to navigate. If you’re doing well, it feels like it should always be this way and, if you’re doing poorly, it’s hard not to feel doomed.
• For a few of us, there’s this feeling of whatever is happening right now is all there is, whether that’s in a very functioning state or the opposite. It’s hard to see the ocean when you’re caught in the waves.
• There’s a very real risk to being mistreated/taken advantage of when chronically ill, especially when it’s easier to be isolated from others when access is already so limited.
• Queer spaces and stereotypical ideas of “queer joy” (think: partying, dancing, etc) often aren’t accessible nor desired. It’s helpful to expand these definitions and spaces, especially to consider chronically ill folks.
• There’s profound gratitude in certain moments when one can look back and realized I survived that are worth celebrating, sitting in, and talking about even as the waves continue.
• Getting a break or having symptoms lift can be very complex–it can underscore the feelings of loss and grief that this is not the state one gets to live in consistently. It can make one overextend or feel like they need to do the absolutely most meaningful thing they can while they feel good.
• There can be a disappointment in fellow queer people in how harm is perpetuated in a way that mimics the way we have each been harmed. There’s something strange about witnessing the ways people take on the role and behavior of “oppressors” when power shifts their way.
• We spoke about an increased gratitude for the mundane and days where normalcy reigns.

I’ll end on a quote that came to me as I wrote these notes. It’s one that’s held me through some very tough days and has helped me speak gratitude for normalcy after turbulent times:

“Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return.”

― Mary Jean Irion