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The Importance of Protecting Your Energy, Literally

By Maria Grace | @marialiveswell | January 27, 2019 |

I’m a low-energy person. It’s not that I’m unenthusiastic or—hopefully-- boring; my mitochondria don’t function properly. Mitochondrial Disease (Mito) is a chronic, progressive, and genetic rare disease. I was finally diagnosed with Mito as a teenager after of a childhood of increasing symptoms. Although I definitely noticed differences between what my body could do compared to other kids growing up, the invisibility of my challenges fueled some serious self-loathing. Accusations of it all being in my head, or cries for attention, didn’t help. The positive turning point was, rather ironically, getting an incurable diagnosis. Finally, I knew that many perceived “failures” weren’t my fault. I’d been doing so well all along, under circumstances that no one understood until the second decade of my life. Obstacles along my diagnostic journey pushed me into self-advocacy, and now towards advocating for my disease community. That’s great, but I still have the same amount of energy as before. Well, actually, far less energy than a year or two ago. I still long to be an impactful advocate, and that’s why I fiercely protect my limited energy. My body is limited, but my creativity is limitless.

Last January, I was running several social media accounts while dealing with feeding tube complications. I had a fledgling YouTube channel, heartfelt blog, articles on a larger website, Instagram page, and a semi-active twitter account. On top of that, I was figuring out how to balance yoga teacher training and being a part-time college student. That might be manageable for some other people, but it was way too much for me. I found myself falling behind, dropping activities because of low energy, and then pushing incredibly hard to get back up too soon. In short, I was doing everything that I thought I should be doing…and it wasn’t working. My body couldn’t support that kind of activity. Something had to change. After a temporary dabble in denial, I chose a different path; I chose to make my own path.

Have you ever said “no thanks” to something that society pushed on you as the only choice? If you haven’t, let’s just say it’s as exhilarating as it is terrifying. I am not a yoga teacher or college student today. Nope, creating my own path meant shutting down activities that weren’t working. I tried to do both of those things at least twice, each, with various accommodations. For a whole host of valid reasons, those paths don’t work for me. Admitting that truth took years. I felt like a complete and utter failure, and I had shared the ups and downs with strangers on the internet. Yeah, that’s a bold life choice. Anyways, what happened next? A pause. Rather than hurtle onward and give my precious energy to everyone, everywhere in the hopes of succeeding as a human, I took my blog and YouTube channel down. The final decision on school came this past fall. Then, I stripped my life back to the things that energize me; writing, advocating for people living with Mito, and connecting with others over shared interest and experiences.

Okay, this is not a case for skipping school or jumping ship on hard things at the first sign of trouble. Far from it; this is a case for pursuing a meaningful life in a mindful manner. Personally, focusing on a long creative writing project is both more natural and more constructively challenging than anything I’ve ever done. In order to protect my energy, it’s one of the things I share the least about on social media. As of right now, it’s simply the “exciting writing project.” Until I’m ready to expend the energy to explain it and show the world what my heart has done, that’s where it will stay. As compelling and achingly beautiful as our stories of perseverance are, we aren’t obligated to share everything. We can choose to process traumas privately or keep special joys for ourselves, forever or until an appropriate moment. Part of protecting my energy is knowing that I don’t owe anyone my story, my life is my gift to share.

Oh, social media, you beautiful beast of a thing. Social media has enabled me to connect with amazing people and opened my mind to unfamiliar life experiences, but it is one of my top energy drains. The amount of energy it takes to meet vulnerable comments with compassionate responses is immense. There are real people behind Instagram accounts, and I never forget that. I want to make every person feel seen and heard when they open their hearts in comments or messages, but that’s asking a lot of a foggy brain. So, I don’t rush to respond. Sometimes it takes a few days for me to respond, and I try not to worry about it. An “Ask Me Anything”-style Q&A on Instagram Stories is a rarity for me, because I will fall asleep halfway through the questions. It happens. Instead, I’m honest with friends and let them know what’s realistic to expect. Yes, I will respond to kind and appropriate words. No, it probably won’t be within the hour. As long as I’m open about my healthy limits, people tend to respect them. Mindfully-set boundaries can benefit everyone, because they help other people feel free to set their own.

My approach to older friendships and kind people I meet out and about is fairly similar to social media; I won’t be the most active person, but you will feel my love. Chronic illness and friendship are a tricky combination, and one that often leads to tension and frustration. I’ve watched relationships flag under the pressures of a rare disease and been sorely disappointed when people neglected to empathize with my challenges. Some people simply weren’t open to learning about my life experiences and rare disease before offering halfhearted platitudes and disappearing. In a way—years later—I’m grateful that they left when they did. My energy levels don’t allow for one-foot-in friendships. People need to understand that accommodations and mobility aids aren’t optional for me. Also, I want them to feel comfortable opening up about their struggles without comparing them to my own. I probably won’t be there for my friends as much as I want to be, but I will show up for them as much as I can. Protecting my energy in friendships means allowing some people to float away and being courageously vulnerable with the ones who stay for positive reasons. My friends will deal with last minute cancellations and late replies to texts, but they will be loved and appreciated through it all.

Strangers are a tough one, as awkward interactions are fairly frequent for young women who use mobility aids in public. I use a wheelchair for distances beyond about 15 feet, and a rollator—a wheeled walker-- for anything shorter. Sometimes, my rollator is used as a makeshift wheelchair to reach a destination just beyond my leg’s reach. For some reason, many strangers interpret such sights as invitations to ask questions about my disability without introduction or context. They inquire “What happened to you?” from opposite park benches and force supposedly healing objects on me in parking lots. As I stated, I honed my self-advocacy skills over years of being a medical mystery. However, I don’t need to answer every question or set every stranger straight. Instead of reacting with frustration at their ignorance and lack of understanding, I protect my energy by simply moving on from the encounter. It may seem like a cold cop out, but it’s a necessary choice in order to be an effective advocate. I can’t be an effective advocate if I’m constantly leaking energy to confront strangers who’ve already shown a lack of respect for my space and privacy. No, my advocacy energy is better used in writing, educating, and talking to potential change makers and gatekeepers. In 2019, I have plans for advocacy that require more energy than previous efforts. As hard as it is, I must ignore the repetitive, intrusive questions and carry on with my day. One or two people don’t get to ruin my day if I don’t let them, and they won’t be hurt by my self-perseveration tactic.

I will end with guilt, or rather, the banishment of toxic guilt. Some of the unpopular choices I make in order to safe guard my limited energy have caused me to feel guilty in years past. Although everyone has a story, and that stranger on the street probably lives with their own scars, I still need to protect my energy. That choice, as vital as it is for all of the creative and impactful things I long to do with my life, can feel selfish. People who misunderstand my motives have even said so, to my face. I can’t please everyone, you can’t please everyone, and we must take care of ourselves before taking care of others. Please, take time off of social media when it feels necessary. Pause and breath for a minute, then carry on being a badass. Follow your own path and empower others to do the same. We all stumble, and humanity is awesomely perseverant. Protecting my energy enables me to get up after I stumble, take a deep breath, and be my best self.

Maria is a twenty-something young woman who lives with Mitochondrial Disease (Mito), Ehlers Danlos Syndrome, and sundry. In fact, Maria endeavors to live well amidst her progressive health challenges. She loves writing, diving into a good book, snuggling with her dog, connecting with friends, exploring non-toxic makeup, and advocating for the Mito community. You can find her on Instagram at @marialiveswell." 

By Maria Grace Instagram: @marialiveswell

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