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 FALLING FORWARD Redefining Strength, Story & Self Exclusive Interview with Lisa Velez-Batista Featured in 'Innerviews' Hosted by Allié McGuire There are moments in life where falling isn’t failure. It’s transformation. For Lisa Velez-Batista, every chapter has been an invitation to redefine what strength truly looks like. This is a story about living fully, even when the path is anything but predictable. ALLIÉ: Lisa, you’ve been living with SMA (Spinal Muscular Atrophy) for decades, which means your relationship with your body has likely changed over time. My first question for you is this: how has that evolution shaped the way you understand strength? LISA: Well, when I was younger, I always felt like I was different from everyone else. I was weaker and couldn’t do everything. I tried to ignore it and do what I could, trying to be like everyone else. As I got older, I learned to accept and mourn the losses, but also accept what I still can do. That’s when I realized how strong I really was. ALLIÉ: Let’s pause for a moment. With the expansion of newborn screening, most babies with SMA in the U.S. are now diagnosed at birth. When were you diagnosed? LISA: I was born with it, but I was diagnosed late because SMA was hard to diagnose back in the 60s and 70s. Primary doctors didn’t have a clue. It was brushed off as, “Give her vitamins, have her exercise, she’s just a skinny little weak kid.” That went on until my grandmother intervened when I was 20. I was in college and fell in front of a bus, scraped my knees, ripped my pants. I went to her for bandages, and I saw sadness in her eyes. When I was a little girl, I had asked her, “What’s wrong with my legs?” and she had that same look. Now I was almost 20, and it was still happening. She contacted my aunt, and they found a hospital in Manhattan. That’s where I was finally diagnosed. Until then, I was just dealing with it, trying to do my best. It felt like I lived in two worlds. I could do a lot, but things like climbing stairs, walking long distances, or getting up from the floor were very difficult. I could do them, but I struggled. So I ignored it and kept going until I finally got the diagnosis.  ALLIÉ: That diagnosis can be both a blessing and a curse. It hurts, but at least you understand what you’re dealing with instead of living in the unknown. I have MS, so I understand that feeling. LISA: Yes. When I was young, people brushed it off. Some even said I just wanted attention. When I finally got diagnosed, I felt validated. There was a name for it. It was real. Then came the devastation. It was progressive. There was no cure, no treatment. I received a pamphlet saying many patients end up using a wheelchair within ten years. I was 20 years old thinking, “I have to beat the clock. I have to do everything now before that happens.” ALLIÉ: Following your diagnosis, your life continues with SMA and also with a book. In Falling, you invite readers into moments many might keep private. What made you decide your story wasn’t just yours to hold, but something others might need? LISA: I started journaling, and one day I thought, this could be a book. Something others might find interesting or helpful. A lot of children grow up feeling different, like no one is like them. I felt that way most of my life. I wanted people to know that even if you face adversity and live in a world not made for you, you can still be successful. You can accomplish anything. I wanted to inspire people not to give up. These things don’t define us. If anything, SMA made me stronger inside. ALLIÉ: Let’s talk about all the facets of your life: motherhood, career, and a progressive diagnosis. Each of those is a full life on its own. How did you navigate all three without losing yourself? LISA: When I became a mom, it was about my children. It made me fight even more. I couldn’t carry my son up the stairs. I had to hold onto the banister and pull myself up. I relied on neighbors. I became a single mom after rushing into a marriage that didn’t work out. I was raising two boys, 19 months apart, on my own. It was very difficult physically, but I did it for them. I struggled through it. They made it clear to me that this wasn’t going to stop me. It wasn’t going to stop me from being a mom or doing anything I wanted. ALLIÉ: Let’s talk about independence. It’s often defined by what we can do alone. How have you redefined independence in a way that feels honest to you? LISA: Over time, I lost different aspects of independence. But I found tools and ways to adapt. I use a high stool so I can get up easily. I have a chair lift for stairs and ramps at home. When I was younger, I thought using a wheelchair meant I lost the battle. Now I welcome using my scooter. It keeps me safe, helps me move quickly, and prevents injury. Independence, to me, is being who you want to be and doing what you want to do. If you need tools or help from others, it doesn’t take away your independence. ALLIÉ: I love that. If someone living with SMA or any progressive condition is struggling to see a full future, what would you want them to believe is still possible? LISA: Anything is possible… I was a young single mom with two children, struggling. I wanted more for them and for myself. I went back to college, earned my bachelor’s and then my master’s, and became a speech and language therapist in the school system. My children saw me fall. One time, my nine-year-old son had to help me up off the street. It broke my heart to feel vulnerable in front of them. I worried they would see me as weak. Instead, I showed them strength by going back to school, building a career, and doing everything I set out to do. You can do anything you want. This doesn’t have to stop you. ALLIÉ: I believe that too. We do what we can do simply because we can. Lisa, I know there’s one more important piece you want to share. There are so many who would want to hear about treatment. Can you tell us? LISA: My whole life, I felt like I was struggling alone, like a soldier on a battlefield with no weapon and no shield. That’s how I lived with this disease. Then, finally, treatment became available. It was the day before Christmas Eve in 2016. We were gathered for a Christmas party. At the end of the night, I looked at my phone and saw that treatment had been FDA approved. It gave us so much hope. Maybe we could gain some strength back, or at least slow the progression. Spinraza was the first treatment ever approved. I was so grateful to receive it. It helped slow the progression. I had experienced many falls, and I believe that without that treatment, I would have lost my ability to walk completely. ALLIÉ: You’ve been through so much and continue to move forward with hope. Thank you for sharing your journey and helping us become more aware now. LISA: Thank you. ∎
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