Learning to Try

Daily writing prompt
Describe a decision you made in the past that helped you learn or grow.

As an adult, I’ve learned to follow through with things; as a kid I struggled to stick to one thing and finish it. I took dance classes as a child and quit for other things. I re-started dance classes as a 16 year old – which is a bit older than most students. I decided to audition for our high school’s flag/dance team. Anyone who knew me would have been shocked to find out I’d done that; it was out of character for me.

We’d be doing a boot camp to get us all in shape and learn the skills we needed to audition, so I went for it. A week in, a few girls dropped out, and I’d started to realize I most likely wasn’t skilled or in-shape enough to keep up with the better dancers. I decided to stay and follow through with the process, realizing that either way I was gaining some great dance training and exercise. You can imagine how things turned out: I didn’t make it. Other girls told me that I’d done really well for my experience level, and I was extremely proud of the muscle and flexibility I’d gained during the camp.

More than those things, I’d gained a new perspective on failure and learning. I started to realize that just because I wasn’t going to make the team, that didn’t mean the process wasn’t valuable. I stepped out of my comfort zone and took part in something I’d never done before, and even though I “failed” at the end goal, I gained so many things from the experience that I still use today. Now, deciding whether or not do something, I ask myself: If the only thing I have to lose is time, and experience can be gained, why not do the thing?

For My Health and Self

Daily writing prompt
Describe a positive thing a family member has done for you.

There are a lot of ways to become a well-adjusted adult and a lot of ideas of what that might look like. For me, the traits I value that I believe much of society values as well are: respect, responsibility, self-motivation, and compassion. There are others, but my parents helped instill these in me in ways I feel made my life easier, not harder. Specifically, my mother, who consistently taught me about the balance between pushing yourself and resting. In my life, she’s the OG of the “work-life balance”. She respected my autonomy and personal boundaries without fail, and stood up for my freedom to be myself and choose my own life.

I can’t narrow-down what she’s done for me to just one action, but I can give you two major times her positive effect rippled into years of my life. When I was young and still figuring out who I was, and everyone had an opinion on what that should be, and when I was an adult and my condition started to become more extreme and debilitating. Both times, her respect and compassion helped me to grow and build those traits for myself.

When I was younger I was never forced to go to family gatherings, extracurriculars, friend’s houses etc. but was asked to make the choice myself. People may disagree with this, but I think it helped me grow into a better adult because the choices weren’t someone else’s, they were mine. The consequences the arose from those choices were then mine too, and I learned to take responsibility for them. My mother gave me the room I needed to figure out who I was, build confidence in that identity, and to make choices in my life that aligned with that. I knew that if I chose not to visit someone or attend an event I had no one else to blame if I didn’t like the end-result. Not only that, it also meant that every interaction I had was authentic and un-forced. It led to my own self-motivation in the tasks I took up, and a sense of care and integrity towards everything I do. She also taught me about respecting my body too: knowing when I was too ill or exhausted to keep pushing. It’s been a helpful balance that lets me prioritize the things important to me, while knowing when to recuperate for the other important aspects of my life.

In 2015, I was struck with temporary, moderate gastroparesis due to a virus, which meant I was extremely malnourished for an extended period. It also contributed to my pre-existing arrhythmia becoming more severe and chronic, and to the development of a second type of arrhythmia. I was miserable, and bedridden, and at the time we didn’t know what was wrong. Being a cardiac nurse, my mom had seen many patients decondition to the point of requiring even more treatment to get back on their feet. My entire life she’d stressed the need for rest when we were feeling bad; this time she was stressing the need for growth in a safe environment. Every day, we walked while my dad waited at home near the car, in case I passed out or needed driven back home. I truly believe this is why I’m not wheelchair bound today; considering my first nurse in a dysautonomia clinic I was admitted to said, “I didn’t realize you were my patient, you’re the first one I’ve had in years with these issues that isn’t in a wheelchair.” My mom worked hard to show me how to tell for myself when it was important to rest and when it was important to push myself. Every day that I am grateful I can still travel without a wheelchair, eat without a tube, and live without a pace-maker, I have my mother to thank for.

My mother gave me years of her time and compassion; on its own, that’s a hugely positive thing to do for someone. By example, she also taught me to respect others and myself, have compassion, take responsibility for the direction my choices lead me in, and to motivate myself to get work done or to rest when needed. There are so many others in my life who have helped give me those lessons too, but on top of all of those things I have my mother to thank for the amount of physical ability I still have left. She made sure I kept as much of my health as I was able to, and that is the most positive effect I can think to have on someone. Thanks, Mom.

Perspective Over Loss

Describe one positive change you have made in your life.

As most Spoonies will know, chronic health issues often force us to make changes in order to maintain our functionality day-to-day. I’ve consistently adjusted my life to accommodate my disability in what feels like a never ending cycle of loss. When this cycle first started, I grieved a lot for the things I may never do or enjoy again.

Throughout the years, this viewpoint might have crippled my mental health if I hadn’t made one positive change: my perspective. It’s absolutely normal to grieve for the parts of your life and health you’ve lost, but I was interested in changing how I felt about those things. It sounds easy to someone who’s never had to do it, but it can be one of the most difficult aspects of chronic illness to manage.

When I was younger, in the immediate aftermath of 9/11, I’d heard that people late for work that morning, out sick, or otherwise kept from the Trade Center buildings due to unforseen circumstances, survived. This knowledge evolved into the idea that sometimes a moment of loss or negative circumstance can end up being positive in hindsight.

I try to remember that the change and loss I’ve undergone, due to my health or other circumstances, might be the thing that pushed my life in the best direction for me. There are an infinite number of ways to live life, and when I stop fighting the necessary changes I end up in situations better suited to who I am as a person. I can’t imagine another choice I’ve made that has had a more positive effect on me than holding that perspective.

Daily Movement as Exercise

Daily writing prompt
What’s the most fun way to exercise?

If you could bring Hippocrates to our modern time, you’d end up explaining that we’ve become more fast paced while also becoming more sedentary. He was said to be an enthusiast of proper exercise and considered it the key to health; he might balk at the idea that, in this age of modern medicine, we’ve created a new health crisis in an effort to coordinate our lives with the least effort possible. I can imagine him saying (in perfect English, of course, because I don’t know ancient Greek) “you have medicines to quickly fight fevers, but you’ve forgotten how to move enough each day?”

In his time, Hippocrates and his constituents used lifestyle medicine to aid in healing from various diseases. For me, I think it’s important to remember that we have all the tools we need to exercise with us, each day, at every moment. Calisthenic work, or using just your own body weight to exercise, is my favorite form of exercise. It can also be the most fun because it can take so many different forms; using small changes in your lifestyle to incorporate it into your day with little disruption.

If you’re anything like me, the idea of taking out an hour or more to do only exercise feels like time you can’t afford to lose, even on something as important as your fitness. Maybe you have kids, or are the primary caretaker of a disabled adult, or have to use your limited energy (hi, fellow Spoonies!) on the most important tasks which leaves little time for focused exercise. Calisthenics can be worked into your daily chores/routine and provide the right amount of exercise for your health.

Sitting up with strong posture, pumping your legs up and down while you sit, fidgeting, taking the stairs instead of the elevator, dancing while you cook, clean, or do other standing tasks are all ways to fill your day with movement. Most of these ways blend in with your tasks in an enjoyable way and might even become second nature. Incorporating them into your moments of fun, such as playing video games, reading, or working on a hobby, creates a fun and ever-changing source of exercise. What you choose to do is limited only by your imagination and physical ability. Make Hippocrates proud by adding more movement to your daily life and have fun doing it.

Experiencing “The Shining” Through Life

Daily writing prompt
What book could you read over and over again?

An enjoyable book doesn’t need to meet any criteria other than to bring the reader entertainment. Stephen King’s The Shining does that for me, and more. His character development and relatability is renowned and I’ve found experiencing their lives vicariously is enjoyable and changes as I get older.

As a teen, and someone with very little experience in caring for others or complex responsibilities outside of my role as a daughter, I enjoyed Danny’s perspective the most. His entire world is his parents, and his navigation through the book repeatedly comes back to them, even when interacting with others. All he cares about is being safe, and protecting his family in his own way. The detail King writes on Danny’s thought process feels similar to how a child who has experienced some level of trauma would think. As someone who developed PTSD quite early in life, it was something relatable for me right from the start. I could read the book over and over simply because of Danny’s perspective.

As I grew, my interests in the book did as well. Reading it again teaches me new things about myself, and reminds me that my world view is constantly shifting with my experiences. Growing meant I understood Jack and Wendy better – The pressure Jack feels to provide and cope with his own failings, and the care and concern Wendy feels as a wife and mother. I don’t know a single adult that hasn’t had a moment when their own flaws have either directly or indirectly harmed a loved one, and Jack spends the entirety of the book wrestling with his personal demons. Wendy spends much of the book wrestling with Jack’s demons, too. I can relate to both, as I think many can, of being and of witnessing a loved one who deals with overcoming personal flaws.

Growing older still, I began to appreciate Mr. Halloran and even the manager Stuart Ullman, with renewed interest. Mr. Halloran is lovable for so many reasons, but especially with his self-sacrifice. He put himself at risk to save a family he barely knew, and to protect a little boy he understood was vulnerable to the hotel’s particular forces. His capacity for love and caring is something to be adored and it’s always a joy to read. Frequent readers aren’t unfamiliar with the idea that characters in books can bring us hope that the real people in our lives might share some of those positive qualities. Dick Halloran, to me, is a representation of the hope we all bring with us into dark times. Stuart Ullman isn’t that so much, but rather a good example of what others appear to us when their viewpoints may be distant from our own. Mr. Ullman cares about his job, and the hotel, and protects it the way Wendy protects her son. He’s not a villain so much as a man whose priorities are at odds with Jack Torrance’s. He’s leery of the man whose personal history isn’t exactly overflowing with proud moments and who seems similar to the previous caretaker, whose end wasn’t so proud either. I’m sure I’ve been the villain in someone else’s life even when I was doing my best to do the right thing for everyone; I can empathize with Mr. Ullman and his concerns.

I’m excited to read the book throughout the years. Gaining more from the characters as my life experience develops, and appreciating the book in different ways than before. A good book is something that provides entertainment, and sometimes that requires showing us something new each time it’s content is consumed. I look forward to being entertained by a new aspect and the old ones alike, the next time I read.