Woops, that took awhile
So that was a bit of a gap between my posts - very much unplanned. Instead of sharing the post I had drafted, I wanted to talk about it because the gap has shaken me and continues to shake me.
While it is important to me to embrace my deeply human qualities here, pursuing writing which comes naturally and at a human rather than mechanical pace, I do want to build some reliability, if only for myself. In the future (or maybe even now), I hope those subscribed here look forward to my posts and find them helpful or insightful. At the moment, I write these also in part for myself - to give words to things swirling around my head and to be seen or witnessed by others in that complexity. It took me forever to post my first draft because I was doing research on how to do this, and so often these days the answer is "consistency" to feed the algorithms. The reality is that no one is as mechanical as an algorithm, but that is especially true for a chronically ill body.
Learning how to write regularly, how to plan anything in and for this body, is an ongoing process. In the past, I tried to make up for what I perceived as a lack of skill by working hard and constantly. Much of the world felt scary and out of my control (grades, jobs, social life, etc.) so I tried to routinize what I could to make things "defendable." That way, the rest of the world could fall apart, but I would be okay in my corner. I would make strict schedules, trying to find the perfect balance of my various tasks and needs, so that I would be valued by others as reliable. Inevitably, something would always come up - different days of the week had different email loads, the bus was late and I couldn't get to the library before it closed, it was raining so I couldn't go for my walk. However, instead of taking these in-stride, I saw them as failures to plan sufficiently. If only I had gathered more data about the expected number of emails I could calculate how long to allow for emails each day. If only I had left more time for the bus. If only I had an indoor exercise alternative pre-selected. I saw each failure to plan as a personal failure - I didn't reach my goal of doing things every time I wanted to. As a result, I lost faith in myself. After all, I had all of this evidence of times when I said I was going to do something and I didn't - so I couldn't even trust myself.
One of the hardest aspects of having a chronic illness, for someone who loves a plan, is how varied the days are. Sometimes I have a ton of energy, other times I am awake but in too much pain to go outside. In the past, I have tried to journal and collect reams of data on what could make one day better than another, with mixed results (which I will definitely share in the future), but I also had to accept that often there were too many variables for me to truly control or plan for everything. I can try to take my meds and sleep the best I can in preparation for running an errand, but the weather can also just be the sort that gives me a migraine and that errand just isn't possible anymore. In the end, I have to accept that I am human and can only control very specific aspects of my experience.
One way that I cope is to live with a partner who can help shoulder the load when and where I cannot. It is terrifying to trust people, doubly so for depending on someone as an adult who was always raised to be independent. My partner does tasks because it takes them less energy to do them than it would me. Going to the grocery store for a full week shop would be my big activity for the day, but for them, it is just a thing they can do on the way home from work. We have always talked about it as being part of a team - each doing what we have more capacity for. The reality is though that it isn't easily divisible into two equal parts. I need a lot more help than they do - I just don't always like looking at that. So when my partner started getting sick last year, I did what I always did - jumped in to help in a crisis. And we did manage. When my partner needed surprise surgery this year though, I had not realized how many things I had let go of to help keep our household trundling along.
A realization came slamming into me in July when my partner was hospitalized for a month and I had to start asking for help from friends - my partner is also my caretaker. We are not just a team, I actually really depend on them for things and, when they get sick, our entire household has to shift to the lack of energy/spoons. I had to ask for extensions on projects, for once not because I was unwell, but because my partner was sick. I had to actually explain that it wasn't just that I was worried about my partner, but that I actually depend on my partner for basic things, so doing anything beyond the basics for two months just wasn't going to happen.
Now don't get me wrong, I still had fun, I still took care of myself. I started watching terrible horror movies and talked to friends who have been amazing. The uncomfortable part was admitting that I have a caretaker. That I need someone in my life so much that, when they are gone, it has a massive impact on my ability to do things. That is terrifying in a culture that prizes aloofness and the myth of "going it alone" above all else. Depending on people can make one vulnerable.
What has been amazing though is how my partner and I have been able to have honest conversations about what we need, and how that honesty has let me ask for help from others. I used to see asking for help as a weakness - that it was a flaw that I couldn't just figure something out on my own, or that I might be bothering someone. And sometimes yes, people are annoyed. But many times, people want to help - they just need to know how. I had a chronically ill friend reach out and ask if I needed dinner made or my laundry done - things that can be small tasks for a lot of people, but make all the difference to feeling clean and fed when tired. I have been able to ask for help and a small group of people jumped in and supported me and my partner.
So, the things that have shaken me and are continuing to shake me:
1. The power of being honest - with myself and others - about what I need, what I want, lets them decide if they have the capacity to help me. It gives me space to form a deeper relationship of care with others.
2. The importance of asking for help, because some people have capacity and want to share. As per typical me, I feel this so often (I love using my admin and organizing spoons to help people confront tasks or spaces that feel terrifying), but only want to help if people want my help. I never want to assume. Despite this, I never thought others might just be waiting for an invitation to help me too.
3. Depending on others. I don't live alone and I can't live alone and still have the energy to do creative things. I can be an introvert and still be part of a species that needs cooperation to succeed - without it being a sign of weakness.
What's next:
I am really looking forward to coming back to writing here regularly, and I have ideas, but I am also curious to hear about what questions you might have or what might be helpful for you - if you could pick someone's brain about journaling, organizing, disability, and overwhelm - what would you ask? Feel free to respond to this email and let me know! As a librarian, I deeply love questions.
Also, I am trying to complete my requirements to be an officially licensed Bullet Journal instructor, so I have to teach two classes and am looking for students! If you would be interested in a brief (1-2 hour) intro class to bullet journaling (on Zoom), or know someone who might be, please fill in this form. Since I need to do this on relatively short notice and for my ease, I will be doing these on a pay what you can/feel is appropriate model. I make no promises about being able to pick a day or time that accommodates everyone and reserve the right to limit the number of participants for these classes.
What to expect: an overview of the bullet journal method, concrete steps to start trying it out, and the ability to ask questions and get some support from a living human :)
If you or a group are interested in working with me in a more official capacity, please email me to discuss what this could look like! I love being able to nerd out about this and specialize in talking about dealing with disability, burnout, and information overwhelm.
As always, if this journey or perspective resonates with you, please consider subscribing!