I didn’t feel like writing a blog post this month. My mind has been very full of questions about my future, my desires, and my needs that I haven’t been ready to share with publicly yet, but I didn’t know what else to write about. To be honest, I still haven’t learned how to do monthly blogging in a way that doesn’t get boring after a handful of months. This year that has been especially true since I’ve been primarily blogging on one topic–disability–which also happens to be a huge, often challenging part of my everyday reality. I have felt like I need to blog about disability in part because I feel it’s important to share an honest representation of my experience in order to cultivate the understanding and solidarity I wish to see in the world, but also because I didn’t know what else I wanted to write about and haven’t been brave enough to explore and find out.
One part of my journey with disability that I haven’t shared much about has been a loss of identity and an accidental un-learning of my ability to dream. For most of my life I prided myself on being a driven person with a strong sense of identity and purpose. I was all of those things, but my life and my identity were also far simpler as a child and teenager than they are now. I think for many people growing up brings with it heartbreaks and disappointments that shake up our perceptions of ourselves and our futures–which can be important steps towards growth and finding purpose in unexpected places. I fully believe that shifts in my identity and goals as I grow are both realistic and healthy.
However, in the past few years I have been so overwhelmed by trying to process the grief of becoming disabled, of being in pain, of dealing with social isolation and loneliness, that I’ve forgotten how to have dreams for myself. It’s incredibly difficult to have a huge portion of your perceived options pulled out from under you at age 22. Maybe that sounds dramatic, but that’s what it’s felt like these past few years. All of the futures I’d considered included things like being able to work full-time, being able to live independently, being able to rent my own apartment, being able to be a working mother… all things I had no reason to believe would become excruciatingly difficult. During my college career I dreamed of working with youth in the nonprofit sector while regularly opening my home up as a community space, teaching high school history and advocating for better education policies, becoming a therapist while also making space for writing, or going on to get my masters degree in history and finding out where that takes me. None of these are realistic options with my limitations, and I don’t know if that will ever change or not.
One popular narrative around disability is that disabled folks can do anything they set their minds to “despite” their disability. And maybe for some disabled people that rings true and feels motivating, but in addition to being simplistic and often serving as “inspiration porn” for non-disabled folks, this narrative just isn’t true for me. If I were to chase one of those old dreams “despite” my illness and limitations, I would be in constant pain, I would be incredibly fatigued which would negatively impact my mood and interactions with others, and I would lose a lot of independence because at the end of the day I’d have no energy left to make myself food or keep my spaces clean. I don’t believe that sacrificing every other part of myself in the name of achieving a goal would actually make me happier or more fulfilled.
Becoming disabled has also challenged me to reject societal standards for what a dream is. Narratives around dreams and goals are often full of capitalistic measures of success and a work-life model that centers and upholds career advancement above all else. To me, dreaming means the ability to imagine how I might construct my life in a way that cultivates connection, creativity, and meaning. Still, giving up the dreams I have had in the past has been difficult and painful, even if letting go of what isn’t sustainable could eventually make room for new hopes and goals. What continues to be difficult is realizing that because I’ve mainly spent the past couple of years trying to be in less pain and prevent my health from getting worse, I’ve forgotten what it feels like to have dreams at all.
Wanting has often been a hard emotion for me to accept. I’ve worried that wanting things for myself is selfish, and felt that the only things I should want and put my energy into are things that serve everyone. My goals have always been partly informed by wanting to be useful and make meaningful contributions to the world, which, though generally a positive motivation, has sometimes prevented me from putting my energy into passions I didn’t deem “important” enough. I’ve come a long way towards unlearning some of those feelings, but wanting things that feel far out of my reach is still incredibly painful and it’s hard for me to believe that my illness won’t steal them from me eventually. So, it has felt easier to shut down the wanting as much as I could. Which, surprise surprise, isn’t actually a solution at all because having dreams and passions is part of what makes life worth living for me.
Currently I find myself without any specific long-term goals and hesitant to name any short term goals for fear that I will not be able to execute them. This year I set the goal to blog monthly, and while I’ve more or less kept that goal, along the way I’ve started to question if blogging is something I do because I am passionate about it, or because it’s one way to filter my passion for writing through a lens that makes it feel “important” enough to invest time into (for some reason I have this narrative in my head that non-fiction is more “important” than fiction, even though that’s not been my experience when I read other people’s work). While I enjoy many things about blogging, it usually isn’t as challenging or engaging to me as other forms of writing. Since writing a reflection takes only a moderate amount of energy from me, it doesn’t feel like a waste or a loss if only a handful of people read my it. It feels pretty safe in terms of avoiding failure. After all, there isn’t really a “wrong” way to reflect on my own life experience. The part of me that avoids shame and feelings of inadequacy at all costs loves blogging. However, as most people who know me well know, fiction has always been my first and most passionate love. It feels risky just to say that publicly. I have allowed myself to put very little energy towards fiction in the past couple of years because I worry that there’s no audience for what I want to create, that it’s not a meaningful contribution to the world, and ultimately that it won’t be good enough because I am not good enough. I recognize that these are insecurities, not actual limitations, and therefore they should not be allowed to hold me back, but I am still re-learning to be daring enough to dream despite them.
I hope that with time, and lots of leaning in, dreaming can once again become a fun, inspiring practice for me. For now, I am taking a deep breath and trying to be bold enough to share this goal: while I feel committed to finishing out this year of monthly blogging, next year I want to invest the majority of my writing energy into finishing a short story collection that I have been writing on and off for a few years. I hope to self publish and have something to share with you all in the next couple of years. I don’t think I’ll stop blogging altogether, but I’m interested in finding new ways to use it to support my other passions instead of as a safer option I can hide behind.