2021 was a humbling year. It was the year that I felt my body give up, shattering my spirit, my brain, my heart. I felt as though I'd been deeply betrayed, attacked from the inside.
To understand this, I need to go back one year in time. As our household quarantined for the holidays, settling in for a long winter, I indulged, possibly overindulged, in drink and food. In December, I was hit with a wave of fatigue, unlike anything I'd felt in the past. The end of the year had been bustling, so I assumed that this was just a temporary wave of exhaustion once I'd finally taken a rest.
As January approached, I got back to work, and the fatigue increased, pulling me back to bed, slumping me over my computer. I ignored it, pushed forward, and then came the pain. Waves of excruciating pain kept me from walking, from sitting, from sleeping. Day after day I came up with excuses to ignore it, but it finally caught up to me on a Sunday morning. It was tired of being ignored, enraged by my disrespect.
I began walking from the second floor of our home to the first floor and froze in place on the landing. There wasn't a part of my body that wasn't screaming at me to stop, every breath was a struggle. I broke into tears on the stairs that day, unsure of how to get back up or go down. My husband ran to me and helped me, and I remember sitting in the living room, feeling completely worthless, infuriated, and despondent, but most of all, filled with fear. An unrelenting fear and nagging in my mind that told me that this was forever.
After I confessed aloud what was happening, the next two months were a blur, and not because so much occurred it is hard to recall, they were an actual, mental blur. I felt outside of myself during this time, I stopped my normal routine, pushing through only for work and moments of relaxation. I relied on my husband for all of our housework, for brushing my hair, for putting toothpaste on my toothbrush.
I changed much of my life during this time, reconsidering my daily tasks, investing in supplements and food that I thought might pull me out of my flare, and purchasing assistive devices.
During the two missing months of my life, I did a telemedicine visit with my doctor, which resulted in no medication adjustments, no suggestions for lifestyle changes, and very little empathy. It was after this appointment that I began my search for a new Rheumatologist. My head began to clear, likely out of necessity.
I found a doctor at Vanderbilt and set up an appointment for a few months later. Visiting her and finding the right medical partner brought me such astounding hope. Not only did she direct to me to the next phase of my medical journey, but she listened. When I returned from the doctor, I started walking beyond the confines of my house. At first, I made it just a few feet, then a block, then two, then three, four, and more.
My Rheumatologist encouraged me to start a biologic, something I'd been avoiding for several years. I took a biologic over a dozen years ago, it caused a painful injection site and nausea that lasted for days. I switched off of that particular treatment and hadn't considered biologics since. Part of my fear came from my father's unending treatment for his chronic illness when I was a child and his own injection site reactions that bore through his skin and left scars.
After discussing options and choosing a biologic that was the right fit for me, I began my fight with insurance, battling with them over the course of nearly three months, all the while both improving from my temporary medication and a renewed sense of hope, but also deteriorating from a lack of treatment.
In the late summer, I began a more permanent treatment option and have seen my body thrive. I'm still not where I was in 2020 or before then, but I can make it up and down the stairs most days with ease, and to me, that is a win. I've also learned to listen more closely to my body for signs and signals.
In 2021, I have been far more disconnected from friends and family, even than in 2020. For many months, it was a physical challenge to engage with the world, and after that, I faced an emotional and mental hurdle, that I'd been tucked away for so long, no one wanted to hear from me.
The same can be said for Limitless. I stopped publishing in February, my last article was written before then, to recuperate. When I started to regain my physical and mental capacity, I felt as though I had no right to share my story, to attempt to inspire and assist others with arthritis and similar diseases, particularly if I couldn't manage my own.
I faced a kriya, a Sanskrit term for spiritual emergency or surrender, or as Julia Cameron describes it in The Artist's Way, "...it is the bad case of the flu right after you’ve broken up with your lover. It’s the rotten head cold and bronchial cough that announces you’ve abused your health to meet an unreachable work deadline."
She goes on to say, "In twelve-step groups, kriyas are often called surrenders. People are told just let go. And they would if they knew what they were holding on to."
This flare was a kriya for me, something much deeper than my health, but a call to action. I needed to accept my illness for what it is within me, respect it, and lean on the pieces and parts of my humanity that make me who I am — my mind, my faith, my desire to learn, my hope to create a stronger, more equitable world.
This time of uncertainly allowed me to become more vulnerable and reserved, but more resilient and honest as well. It helped me reframe so much of how I view myself, and also much of Limitless.
I started working on Limitless in 2019 as a way to work through my own emotions, as well as shine a light on others’ journeys. I wanted it to be a place where we could all share our stories, learn from one another, and continue to grow and heal.
Limitless shouldn't represent contrived positivity, overwhelming negativity, or quick fixes. It should be the larger story of our humanity. We are women with chronic illnesses who wake up each day, some days easy and some days difficult, ready to tackle life, both in spite of and in partnership with our illnesses.
I wish to publish less frequently, crafting deeper articles instead of brief blog posts. I hope to develop intentional partnerships with many of the women that I've come to know over the last two years and others that I've yet to meet. Limitless should feel more like a publication — covering mediums beyond non-fiction, like fiction, poetry, music, art. This should be an open platform to dig into the different creations and stories that we have to tell, as well as in-depth explorations into the people behind the work.
I also want this to be a platform for, not just those suffering from chronic illness, but their friends and families, as a way to create a shared experience and create honest, empathetic dialogue.
I'm still sorting through some of the more lofty goals for Limitless, but I can promise that it will be done with great intention and purpose. I do hope you will stay with me on this journey.
