Photo by Marcel Eberle on Unsplash
Yeah, somehow, it’s week 11 of this whole thing (considering that Feb. 10 began week 1).
I haven’t been writing because I have not felt good in a while; that’s the simplest way to approach it. It hasn’t necessarily been about pain or impairment, but more about losing sight of the end of the tunnel. When I was writing in week 6 and 7 of treatment, I wasn’t feeling great and many of the side effects that I’ve been struggling with the last several weeks began there. So, it’s not like the last two or three weeks have been functionally worse; what they have been is horizon worse. In Week 7 (and even through part of week 8) I could cheer myself on by being “done” or “recently done” with treatment.
The carry-on afterwards has been the most challenging part. Yes, it got worse (like they said it would); yes, it was nice to not have to be going to the hospital every day. But having a hard time breathing, sleeping, talking, and eating; feeding myself through a tube in my stomach every day; sitting down in the shower because it was too much physical exertion to stand up; sitting in a chair at my front window and watching everyone pass by living their lives every day (which in some ways was therapeutic); having no attention span for anything but a TV show that I might nod off in. Y’all, these things sucked. I didn’t want to write my way through that, and, if I’m being honest, today is the first day I’ve even considered writing because I’m feeling stronger and because I see an expanding horizon.
So, just like the Peter Tosh song, I’m gonna pick myself up, dust myself off, and start all over again.
I do want to observe some high points of the last couple of weeks though . . .
A position opened up in my department that I applied, interviewed for (over a video call), and was chosen for. Starting in the fall I’ll be Internship Coordinator for my department. I’ve started caring a lot about internships since I started designing and leading volunteer experiences for students within the 48in48 non profit organization. In that framework, students receive a month or two of preparatory training and are then added into a “build time” for a 48in48 weekend-long hackathon which consists of 48 teams building websites for 48 non profit orgs over 48 hours. It’s a whirlwind of activity — exhausting, exhilarating — and great for networking and “on the job” training. I’ve always been a big fan of designing experiential learning opportunities in my classes, but after leading students through 48in48 for two years, I have learned how valuable it is for them to see what the working world looks like while they are still in school. I’m excited to continue a partnership with 48in48, and also to be able to support all of the interning students in our department through a reflective process of learning beyond the campus.
My oldest son Noah offered to start coming up here to spend the night with me on Saturdays to give Jenn a break, so for the last three weeks he has come up to my house straight from work on Saturday and stayed through to late Sunday afternoon. Through that time, I wasn’t able to talk much, I was a coughing mess, and all I could do was write or type notes to him and watch things together on the projector. The first weekend we watched 6 of the 7 Alien movies, a real passion of ours (and we watched them chronologically according to the timeline of the films, so we started with Prometheus; I highly recommend this approach). In the second week, it was a collection of other films we both enjoyed and wanted to see again (including Once Upon a Time in Hollywood and Ad Astra). In the third week we made it through half a season of Survivor (Season 42). It reminded me of how, when my kids were younger, every weekend that I was together with them was a kind of film/media school. Film has always been a medium that Noah and I have strong opinions about and great conversations over.
Last weekend, my parents came up, and I was able to spend time with them and Noah together for a couple of hours. It was a nice, quiet visit, and I was glad that, for the first time in a long time, I was able to use my actual voice in a conversation over the course of an hour or two. That felt like a big win.
I’m going to commit to at least one more of these posts before I go back to regular blogging on the front page of my domain. Hearing from many of you via email or text when you’ve read one of these posts has given me an enormous amount of encouragement. It’s also given more depth and structure to conversations that I’ve been able to have with people because I haven’t had to “cover” the “how are doing?” question. Instead, people who have reached out to have been able to say something like: “I read this on your blog post, so the question that I have is . . .” It’s also been successful in maintaining a feeling of connection with the group of people that I’m usually swimming with: colleagues, friends, neighbors; people I see at parties, at work, at concerts, out and about in Atlanta. I have been smaller and quieter, at times I’ve wanted to disappear, but I have felt connected to all of you more by writing these posts and hearing from you about them. Thank you for staying in touch with me.
Finally, I would like to take a moment to recognize the enormous amount of support, encouragement, and exquisite kindness that I have received from my partner, Jenn.
One of my all-time favorite pictures of Jenn
She has been present and helpful to me throughout this months-long journey, but the last three weeks have been, I think, the most trying for us both. She listened to me, early on in this process, about the kinds of help/support I did not want going through treatment. She honored that. She has been present for so many wake-ups in the middle of the night, low energy days, and conversations that took so much longer because sign language or writing on the notepad slowed them down. Her schedule has been altered and constrained sometimes because of her commitment to be a caretaker. So kind, so generous. I don’t know how you can appropriately express to someone how thankful you are of their walk with you through a difficult time. I hope that this captures some of that feeling, which is so big in my feelings. I am in love with this person, and she really showed up for me. I’m enormously grateful.
I look forward to another update in a week or so. Be safe and adventurous, y’all.
