By Hailey Joy Scandrette
I love to feel like the things I do matter. Scratch that, I have an almost pathological need to feel like the things I do matter. I am motivated by believing that my choices can have a positive impact–that by taking public transportation instead of driving, by buying all of my clothing used, by not buying chocolate that isn’t fair trade, and so on, I am building a lifestyle around an awareness of my impact on global sustainability. This impact is probably so small that it’s almost non-existent, but it’s exciting for me to think creatively about ways I can refuse to contribute to unsustainable systems and consumption.
I get much less excited about personal sustainability. Taking care of myself feels boring and relatively unimportant. I am very good at convincing myself that doing the bare minimum to keep myself emotionally and physically stable is more than enough. It feels like there’s always something more important to focus on.
However, in the past couple of months I’ve been put in a position where I don’t really have the option to ignore personal sustainability. At the end of February, I was diagnosed with fibromyalgia (and possibly CFS, they’re very closely related). Which is a fun little condition that causes chronic fatigue, pain, and cognitive dysfunction (brain fog). Medical professionals don’t really know what causes it or what it is (though they have theories), and there’s no cure, so most people who have it just learn to manage their symptoms to the best of their abilities.
Before this all flared up I had decided that I wanted to pay more attention to personal sustainability this year. I wanted to do a better job of taking care of my needs–especially my emotional and social needs. I was excited about working towards more independence as a young adult still living at home, cultivating new friendships, and investing time in meaningful projects. Unfortunately, it feels like fibromyalgia has forced me to take several steps backward in all of these areas. My limits and capabilities have changed drastically. I dropped down to part-time enrollment at my university, but still feel overwhelmed by the coursework for the two classes I’m in. Much of the time my energy is so low I can’t prepare food for myself or do my own laundry. It is hard for me to connect with my friends and classmates because my cognitive dysfunction makes it more difficult to carry a conversation or think on my feet. This, combined with the knowledge that my life will look a bit different than the lives of most of my friends, is very isolating. I’m still figuring out what amount of exercise my body can handle (so far, that amount is very, very little), how my diet affects my symptoms, what times of day I have the most energy, and what dosage of my medication is most effective without making me feel like a potato.
Given all of these changes, I have no idea what personal sustainability looks like right now. I’m hopeful that eventually I’ll figure out how to manage my symptoms and learn what my new normal is. But I don’t even know where to start, and I honestly feel kind of stuck. I can’t make plans for anything more than a couple weeks in the future because I have no idea what I will be able to do in six months, or in a year, or in five years. Most of the things that I have always wanted most in life now sound too exhausting to ever attempt.
I should probably feel lucky that it is so rare for my personal sustainability to almost completely eclipse my desire to contribute to global sustainability in urgency. The fact that I have seldom had to put serious thought and effort into my own survival is evidence of great privilege. A privilege I still have, even now that my physical needs demand so much of my attention. But it’s hard to feel okay about what’s going on in my life right now, let alone to feel lucky. I feel discouraged, angry, tired, and isolated from the people in my life and from God. Asking “why me?” Only leads to harder questions and harsh reminders that so many people are dealing with so much worse.
When I try to broaden my thoughts to include global sustainability it’s hard for me to see how I can meaningfully contribute. Sure, I can be intentional in the foods and products I consume, but even things I used to do to be earth conscious are more difficult now. For example, I can’t take public transportation to school like I always have because it takes too much energy and I’m tired out before class even starts. I don’t know what my role is in creating a more sustainable future for the world when I am so uncertain about my own future.
I don’t have a satisfying way conclude my reflections. My life and the world both feel like a mess right now. But maybe acknowledging the mess is the first step in a long process that will bring greater wholeness in time. For now, I am trying to give myself space to struggle.
Author Bio: Hailey Joy Scandrette is a senior at San Francisco State University studying US History, and Counseling. When not ears deep in primary source analysis and note taking, she enjoys thrift shopping, writing, climbing trees, and going on long walks with her friends and family. She is passionate about social justice, living incarnationally, loving and serving others, and almost anything else that she has any opinion on.