Pursuing Joy: The Next Chapter
If you’ve been a longtime reader of this blog, you may have noticed things look a little different around here.
Or, if you’re anything like me and have a really bad memory, I forgive you for not taking note of the many changes I’ve made. In your defense, I’ve been tweaking and editing over the span of a few months, so the changes may not have been as apparent.
Either way, I’m grateful you’ve stuck it out. Thank you for letting me create a space where I can spill my heart out and share the everyday mundane with you. As much as I love blogging, I also love building websites *nerd alert*Anyway! I’m really excited to introduce the new-ish blog and dive deeper into the intention behind what I’ve created and what you should expect to read in the future. But, don’t worry. You’re still getting the same ol’ me with her heart on her sleeve, ready to show up to the internet scene and serve.
Allow me to explain.
The prologue
The truth is, I’ve been radio silent around here for quite some time for one simple reason. I’d still been writing over on Instagram and SMA News Today, so the dreaded writer’s block wasn’t an issue. But, every time I’d attempt to write a blog post, I’d fall short. And, I’d tell myself I wasn’t cut out for this whole blogging thing, but realistically…I felt as though I didn’t have any real direction.
Sure, these were stories of my life. But, in sharing them, what was I trying to accomplish?
The storyline
In 2013, I began this blog to chronicle the everyday musings of life with spinal muscular atrophy. I knew nothing about blogging. But, after unsuccessfully searching the internet for something other than medical facts, I realized it was time to take matters into my own hands.
From there, my journey with this blog began. My intention was to write stories that you couldn’t find in a medical journal, stories that showcased the realities of SMA and would educate the community on what it’s like to live with this disease firsthand. This blog was going to strictly be about living with SMA, and no one could sway me otherwise.
But, as time pressed on, this blog began to evolve as most things in life will do. Over time, I was discovering that my words began to carry a much different weight and expanded beyond educating the community about SMA. It was found through the messages I’d receive from people, people who had been affected by SMA and people who had no history of this disease in their lives. Regardless of where they came from, they were all bound together by the words I had written. Their sentiments echoed in the back of my mind and became the driving force behind the work I produced.
The plot twist
But it wasn’t until I met a girl at the hospital two years ago that I began to truly notice a shift here.
It was an autumn day in October when I made my way down to the hospital lobby after having just received my 6th Spinraza treatment. I spotted her immediately and went over to introduce myself when I saw a bushy, golden tail wagging at her side. He was one of the most gorgeous service dogs I’d ever seen, so naturally, I had to go say hello.
Her car soon pulled up, but as she was putting her dog in the back seat getting ready to leave, she yelled out to follow him on Instagram. Later that night, I received a message from her (and technically her dog) that would forever change the course of this blog and bring even more intention to the words I write.
This girl didn’t have SMA. She didn’t relate to the same realities I talked about in my blogs. But, in her message, she shared how she had her own health conditions and had actually been following me for quite some time. Following her diagnosis a year earlier, she stumbled across this space and said these words gave her hope. They gave her a reason to believe that, in spite of her disease, life was going to be okay.
I don’t know that she ever realized the impact her message had on me, but it was then that I began to dismantle the ideas I had about what this blog was all about.
(by the way, this girl and I are great friends today!)
The climax
Yes, these stories were very much about living with SMA. After all, I live with the disease— it is bound to have a profound influence on my writings.
But, there was something missing, something that prompted me to revisit the purpose behind my words and how I envisioned them evolving in the future.
SMA no longer felt like the theme of this blog but rather the main character, and that was okay. Just as we do with books and movies, we find commonalities with the main character. We become hooked to the story they tell. We learn from them. And, in spite of these stories being vastly different from our own, we still somehow resonate with them.
This was how I saw SMA fitting into this blog. It was present in every story. It played an integral role in delivering the message behind each post. But, it was simply the main character of a much bigger story.
While these words have been (and always will be) heavily influenced by my personal accounts with SMA, I kept asking myself: What was the overarching theme behind these words?? And how could I hone in on this and continue to show up with even more stories for my readers?
I wish I could tell you I had some big eureka moment...
But the truth is I pondered this for years in spite of continuing to write intermittently. It wasn’t until very recently when my answer finally decided to meet me on a quiet Saturday night. I finally discovered a direction I had actually been following (albeit somewhat blindly) since the beginning of this blog.
In every story I shared— in every trial and triumph that spilled from my heart and onto my keyboard— the common theme that weaved these stories together was this idea of joy. And, I’m not talking about the kind of joy that comes from a life without challenges and pain. I’m talking about the kind of joy that is cultivated in spite of these things— the kind that is ever-present in our hearts. My parents had instilled the concept of joy in me at a young age, and without even realizing it, I was conveying the same message in my writings.
For every trial I endured came an outcome of triumph. Every mess I lived came a lesson learned. Every darkness that cast its shadow over my life came a glimmer of light. These were the stories I was consistently writing about— stories where joy was the glue that held us together.
The resolution
So, what does that mean for the ol’ blog going forward???
Well, you’ll still be getting the same ol’ Lyss sharing the same ol’ stories of trials and triumphs influenced by the same ol’ realities of SMA. That is forever my promise to you. But, now we’re going to expand on that. We’re going to dive a little deeper into the overarching theme of joy that most of these blogs have portrayed, and we’re going to do so together.
Aside from storytelling, this space will also incorporate topics of health and wellness, lessons learned, and content that sparks growth and self-improvement as we learn to discover what brings joy into our lives amidst this complicated world we live in.
I’ll be honest, though… in deciding to take this blog one step further, I had some serious doubts in wondering if I was the kind of person who was qualified to really have a conversation about joy. Truthfully, I am not the most joyful person. But, with my parents’ encouragement to pursue joy in my everyday moments— especially during the hardest ones— I can now fully grasp the true meaning of the word.
And, through my doubts, I realized:
To live a joyful life doesn’t mean you have to be programmed to be a joyful person. It simply means that, in spite of your hardest moments, you are still free to pursue this feeling.No one is holding you back from allowing the highs and lows of life to coexist with one another. You are allowed to feel sad today and joyful tomorrow. You are allowed to feel both at the same time. Heck, you are allowed to feel whatever you want whenever you want.
That’s called being human, and to believe under false pretenses that you are not deserving of joy due to circumstances or unwanted feelings out of your control is to do yourself a complete disservice. I may not know much about you, but I do know that, regardless of what has happened to you, you are always worthy of joy in your life.
The epilogue
I’m going to leave you with a story that I kept referring back to while revamping this blog. In trying to decide which direction to take it in, the smallest, insignificant detail of this story kept tugging at my heart, and eventually, I realized that I had to share it with you.
The year was 2016, and I was in the hospital’s intensive care unit with the flu. My breathing was labored, my body had rejected food for ten days, and emotionally I was spent. I wish I could tell you I pressed on with a positive attitude. I wish I could say my circumstances didn’t deter me from keeping the faith. But, the truth was joy became a distant memory in that hospital bed. My heart felt hopeless. My spirit felt weak. And, I no longer had the will to fight.
One afternoon, my critical care specialist walked into my room in disbelief. The blinds were closed and the lights were off, yet I was wide awake. He took notice of the vacant look in my eyes and asked for permission to open the blinds. When walking back from the window, he stopped at my bedside and reminded me of the Alyssa he knew— the strong and stubborn girl who was always tougher than the battles she faced. And, without intending to give such profound words of advice, he simply said:
“Let the sunshine in. It’ll make you feel better.”
And, guess what. He was absolutely right. In the moments that followed, I finally allowed darkness and light to coexist within me. I allowed myself to grieve the pain my body and soul were enduring. But, the minute those blinds spun open, I allowed myself to feel the joy light brings.
It was then that I began to realize joy and pain have two very different objectives, but both are allowed to be felt in tandem. Both are allowed to reside in your heart and still propel you forward, regardless of the challenges you are faced.
That’s how I hope you will perceive this blog going forward— like opening up the blinds to a darkened room. Because, even amidst a complicated life, you deserve to embrace the sunshine. You deserve to know what that feeling is like.
And, above all else, you deserve to still pursue joy.
Are you with me? Let’s pursue joy together.
