It’s easier to sink than swim. That’s what they don’t tell you. But sometimes it’s hard to tell the difference between sinking and floating stagnant. My father taught me that everything takes its time. No matter how great the desire to motor through every problem until every one of them is solved—a thankless dream by the way—there will always be something you cannot fix just by tackling it. There will be pieces to the puzzle you don’t have yet. There will be mountains you are not yet strong enough to move.
My mother taught me that sometimes you won’t know what you want until it hits you in the face. You can spend years keeping your head down, doing the work, building a foundation. All at once, that can change. If she was a friend of mine when she left school in her early thirties because she fell in love, I would’ve reminded her how very juvenile it sounded. She would hear, rather endlessly, that no one person should stop you from building your life for you, especially when you don’t know how long they’ll stay.
Here’s the thing, though—she knew. Neither of my parents questioned what they found when they began their short courtship. If you asked either of them the definition of love, the answer would be “Her laugh.” “His wit.” “Her patience.” “His kindness.” And for them, the rest fell away.
In the passing years, babies bloomed from their little green house on a hill. I’ll admit that as I grew up surrounded by my parents’ love story coupled with their persistence to push their children toward a better life, I became a little judgmental. I thought that when they met each other, their story stopped. I was encouraged to swim towards a life that neither of them had ever desired. Building a future at 16 didn’t make sense to me; if I was going to build something, only made sense to build and find the relationship my parents found. I assumed that love would be the same for me as it was for them—the rest of my life. Caught up in this idea of love that my parents imparted on me, I spent time looking for people to grow with rather than grow on my own. I was looking for someone to know and love who I was despite the fact that I didn’t know who I was.
For me, the pressure left me stuck. I found people who could love the bells and whistles of who I was, the best I had to offer. And the rest of me suffered. For the rest of high school, I spent so much time coasting by on natural talent. When it came time for me to answer the questions everyone asks you at a certain age, I had no answers. Any academic and creative endeavors I embarked on were simply to get the grade, finish the painting, get this out of the way and on to the next thing. I lacked the agency to find what I wanted, and nothing appeared out of the sky to show me what I was doing wrong. Then everything changed.
Caregiving threw me from the stagnation I succumbed to. Suddenly, it wasn’t about me anymore. The focus was to get my mom better and once that was over, I could move on from there. Weeks turned into months, summer faded into fall, and I continued my care for her. Slowly I integrated different parts of her routine into mine, gladly pushing aside my own priorities. My relationship became a place for me to vent when the stress of caregiving became too much. I attended one semester of college, then stopped. We didn’t have a name for the disease for the first year or so that she progressed, so I just put out fires wherever I could until we could find something to point to, something to blame. If she can’t walk with her cane, get her a walker. If she takes a long time getting ready for bed by herself, help her to bed. As time went on, we continued to assist her through the decline. But the question was weighing heavily on us all. It was about a year after we knew my mom was really sick that her neurologist was finally comfortable with a diagnosis.
Multiple-System Atrophy with Parkinsonism; a thief of a disease that slowly peels away your abilities and tries to take your heart with it. The patient loses their ability to walk, dress, go to the bathroom, eat, even speak. I think part of me knew it was terminal before we knew what it was. The decline was too steady to be something you could survive from. Her doctor gave her five years at most.
If I’m being honest, the ensuing years go by in a blur. My mother had the sense to slowly make arrangements, so we’d have to do as little work as possible after she passed. My father and I took on the bulk of the responsibility. He worked to provide food, a home, healthcare. I became the organizer at home. After getting her medicated, showered, dressed, and fed, we’d go to doctor appointments, physical therapy, and take my siblings to whatever high school engagement they had. We’d go to bed late and start all over again early the next day. I kept my head down and immersed myself in her day-to-day. But it wasn’t about my need to escape uncertainty anymore. I needed to hold on to something. I needed to hold on to her.
College didn’t make sense for me anymore.
My relationship was built around an idea of love that was unrealistic, and while before I had been too scared to grow, now I didn’t have the chance. And so, of course, it ended.
A few years later, I left work to take care of mom full-time. And I was beginning to wane. I began to finally realize what I was missing out on, even though I feasibly couldn’t have it. Before this point, my life was completely beyond my own thoughts. My days and nights were consumed with caregiving and I forgot how to be. I wasn’t showering. I wasn’t spending time alone to recharge. I saw my friends two or three times a month. Eventually I barely slept. It was in those times I realized that there was a future I wanted, even though I couldn’t see it before. I wanted normalcy.
I wanted to be going to school. After being away for a few years I learned that what I craved so badly was to be learning. I spent so much of my time on others, both the right people and the wrong people, I didn’t realize that your longest relationship in life is with yourself. And I didn’t know her.
I knew I desired more perspective from the world around me. Many American 21-year-olds were in school, close to finishing their degree. I wasn’t there yet. I finally decided tv and film production is a perfect way to satisfy my need to organize and manage while also being creative. But I didn’t have the time or resources to pursue that as a hobby, let alone a college major. I needed to move along and become my own person. You can only surround yourself with the same people 24/7 for so long. I longed for a space outside my family home to focus on what I wanted now that a picture was finally coming into view.
The reality was this: if I wanted to live my life, it would only become possible after my mother died. And losing my mother was not the price I wanted to pay. That thought nearly killed me. I don’t know anyone else that has ever hated themselves for a single thought and in this I felt completely alone. I was trapped by an inescapable life situation and my ambition. I craved a life that wasn’t ready for me yet. I felt like I was being drowned and nothing I did could stop it. At that moment, it felt easier to sink. Eventually, the only way to keep myself and my family afloat was to find others.
I found several online forums for caregivers. Most of the members were much older than I was, but they were empathetic just the same. My friends came over more when I couldn’t leave the house so at least I had a break. I took a few classes at my local community college to dip my toes back in to higher education. If I took one or two classes, at least I wasn’t a bystander in my own life. I was still moving forward. I implemented a stricter self-care routine. These things may sound simple, but make no mistake, they saved my life. My support system helped me get to where I am now.
Through her last year, my mother did not falter. She did not become bitter. She was in control of herself, her personality, her essence, until the very end. She was a loving, patient, funny, dorky, intelligent, witty woman. She had a laugh that could fill a room and a smile that made all the work worth it. She is everything I hope to be.
What I didn’t realize, learning from my parents after years and years and years, is that life is not just one thing and life should never be just one thing. My mother and father had decades of life happen individually that prepared them to meet each other. And still, what made my parents’ ultimately the happiest was each other. This is not the same truth for everyone. For some, it’s the job they’ve been working towards since they were little. For some, it’s chasing their passion after years of working in jobs that only paid the bills. For some, it’s the friends picked up along the way. All I know is, I don’t know what I’m looking for, just that I have to try to find it.
At mom’s memorial, my aunt gave the eulogy. What she said will stick with me until I die. “Your mother spent her life building you. This is your time to make your life your own. Make her proud.”
This is the biggest transition I’ve ever gone through. I know that the past few years have changed me irreversibly, and they’ve taught me more than I could say. But I finally have a chance. I may not be in the same place others my age are, but this isn’t about them. I owe it to myself to finish my associates, transfer to a four-year university, and see where life takes me. I owe it to myself to work towards something bigger than who I am now. Most of all, I owe it to her to try.
In dodie’s song “Life Lesson,” she writes, “When I’m eighty years old and alone in my chair, will I look back at safety and be glad I didn’t care? No! I can hear her screaming love, break and learn. What else are you young for? Fuck it, hurt whilst you can.” I don’t know who I’ll be at 80 years old. Life is uncertain enough that I know I might not even make it there. But this is what I do know: I’m not going to look back and be pleased I didn’t take risks. Right now, she’s writing back to me, “Create, change, build. Make mistakes, learn from them. Swim.”
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Rebecca Nason is a US Represented contributor and student at Pikes Peak Community College.
