I had to be resilient when I found out that I would be living a shorter life because of my rare disease, and after the death of my best friend/teacher, Mr. Main.
My name is Soraya Faruqui. I am 13 years old and a kind, trendy girlie who loves so many things it’s almost impossible to list them all. What really defines me is the way I connect with people—I feel their emotions as if they are my own. It brings me comfort that even as my body has changed in ways that scare me, that part of me has stayed the same.
I’ve had a medical condition since birth involving the TAOK1 gene. No one knows exactly what the condition is, which is frustrating and confusing, especially because it has always had a big impact on my life. When I was a baby, I couldn’t eat well, so I got a G-tube. For years, I could walk and run—maybe slower, maybe with more help—but I could still move. Then, a couple of years ago, everything started shifting. My muscles weakened and tightened. The pain grew. I needed BiPAP to breathe and eventually a wheelchair to get around. Every day feels like I’m losing parts of my body, piece by piece.
I know I’m dying sooner than the average/typical person. It’s a heavy thing to understand at 13. It changes how people treat you and how relationships feel. But it also shows you what really matters: the people who see you. The people who love you for who you are—not for what you can do.
One of those people was Mr. Main.
From the outside, we didn’t look like the kind of pair who’d be best friends. Me—a girl in a wheelchair, getting weaker each year. Him—strong, full of energy, the guy everyone passed and looked up to (he was really tall!). But somehow, we were a lot alike. We both thought deeply about our purpose in life. And even on our hardest days, we still tried to show up for other people.
I met him in fifth grade because he was the person who opened the elevator for me every morning. It seems like something small, but he made it meaningful. He’d press the button, flash a warm smile, and say, “Going down,” in a way that made me feel seen.
Those tiny moments turned into conversations, shared candy, jokes, and advice that always seemed to come at just the right time. Even when I was too exhausted for a full school day, I’d still come in just to have lunch with him on Fridays. I saved my energy for our weekly lunches because they were so special to me.
As the school year ended, Mr. Main began to feel unwell. I noticed before most people. He pushed through the fatigue and pain, hoping it would all just go away. No one knew he had undiagnosed lupus and that his body was fighting itself silently.
Things spiraled quickly: a brain clot, a brain bleed, an overwhelming infection. One moment, he was still part of my world, and the next, he was in the hospital for months until…he was gone.
I went to his funeral because I needed to see him one more time. I had never been to a funeral before. My parents warned me about what to expect with the open casket, and when I approached, I reached for his hand. It was cold and still—I held it anyway. I wasn’t scared. I wanted him to know I was there, that I loved him.
Since Mr. Main’s death, something inside me has felt so raw. Heavy. Like there’s this quiet ache I don’t know how to soothe. For a while, I didn’t know how to be happy anymore. I felt lost.
Sometimes music helps. Especially Ed Sheeran’s songs, the ones that feel like someone is speaking straight through their pain. Listening to songs with lyrics about loneliness and digging through grief and depression helps me feel less alone, like someone understands a part of me that the world doesn’t always see.
As feelings come up, I write them all down on my iPad. This is hard for me to do because my hands get so tired, but getting my feelings out of my head is worth it to me.
I have memory issues, and I’m so worried I will forget what Mr. Main used to tell me and the sound of his voice. I share all my writings about my feelings with my friends, family, and my therapist to honor him. Therapy helps too, even if it’s slow.
What I’ve learned is that resiliency isn’t pretending everything is fine. It’s knowing life is short and choosing to spend time improving relationships, making memories, and noticing the people who see you and love you. Resiliency is letting yourself feel the grief and still choosing to keep your heart open. Being resilient is extremely hard, tricky, and challenging. Now, I’m continuing to work on my sibling relationships before my time is up.
I’m still here. I’m still loving people. I’m still learning how to carry both joy and loss at the same time.
And that is what it means to be resilient.
When I found out I was dying sooner than the average/typical person, I really felt resilient because I had my family and Mr. Main to lean on for support.
I was worried about having limited time to accomplish life goals that were very important to me, like making memories with my family. I wanted to make sure I achieved those goals, no matter how much or how little time I had left. These thoughts made me resilient as I fought to create new memories and improve my relationships with my sisters.
Mr. Main helped me mentally when I felt like I couldn’t physically fight against the scary changes happening to my body. He told me something motivating every single day. He was supportive and loving. His words and actions helped me believe in myself.
With his death, I’ve lost that feeling and am now learning to be resilient again. My practice is to take it day by day because I realize that I need time to process his death. I will be resilient by never getting over him. I will be resilient by honoring him by trying to be the voice to myself that he was to me. Resilience takes time, and I’m still processing.
For people who are dying sooner than the average person and for those who aren’t, I would say the same thing: Make memories as much as you can and do the life that you dreamed of. You still have a chance to do what makes you happy.
For people who also lost their best friend, I would tell them to think of all the memories. Try to remember their voice and how they impacted your life. They are always going to be around you and within you. Remember, it’s a process that takes time. Finding a good therapist and other people who have gone through loss will help you feel less alone.
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