Anniversaries and Acceptance: 10 Years After an AFM Diagnosis

By Lyd Lacey 

 

August 21st, 2024, marked my tenth anniversary of living with Acute Flaccid Myelitis (AFM). I spent the day no different than the day before — going to class, doing my homework, grabbing Starbucks, going to the gym — yet it felt like everything had changed. Anniversaries are always a challenging time for me. The dual nature of my experience makes every anniversary a time of reckoning for me to reflect on the past and look to the future — and my tenth anniversary was no different. 

The first emotion was painful acceptance. I felt the pain of living with AFM for ten years and a sharp understanding that I would be living with it for a long time to come. Growing up with AFM was really hard — I always felt like I had to hide an integral part of myself from my friends and peers. Often, if I did tell people, I faced a myriad of questions and comments alongside a hefty dose of isolation. Aside from social dynamics, I also deal with pain and discomfort daily. I have to carefully monitor my activity levels so that I don’t cause any more pain than usual, and daily tasks like driving and washing hair are cumbersome at best. For a long time, my goal was to just make it to my tenth anniversary. Now that I’m here, I’m realizing more than ever how permanent my diagnosis truly is. None of these things will “get better,” and that’s just how it is. Suddenly, my goal became simply existing, which is ten times harder for me. How can my goal be something intangible: existence? Frankly, I’m still unsure if I know the answer. 

On the other hand, I felt a joyful gratitude. In a way that many able-bodied people find odd, I’m grateful for my AFM. My commitment to myself and others is to be the person I needed most when I first got sick, which has led me to many opportunities. I get to volunteer here at SRNA with the blog and co-lead the Teen Support Group. Additionally, I get to speak at the Rare Neuroimmune Disorders Symposium in Dallas later this fall. I’ve also had the privilege to speak with reporters from both local and national news stations to bring a voice to AFM patients. I’ve grown so much as a person as I’ve come to understand my place in this world. My AFM journey has helped me see the world from a new perspective and has taught me to be more compassionate in every interaction. I’ve learned to take my time and consider things from every angle. I’ve learned to pace myself so that I can manage my energy and pain. I’ve built up an incredible support system of family and friends I can rely on. I’m learning more about AFM every day, and I am also learning about the other disorders SRNA works with through their online mini-courses. And, perhaps most importantly, I’m beginning to embrace the unknown. There is so much that I can’t control (not just relating to my AFM!), and making a concerted effort to take a step back from trying to control everything has helped me to improve myself even more. 

Every anniversary is another chapter’s beginning. Although anniversaries may be a time for reflection, I’m learning to also make them a time of recognition and celebration. It’s okay to have a diverse range of emotions — lean into all of them!