Title:
Unyielding Advocacy: Becky Curran’s Journey Through Loss, Disability, and Empowerment

Subtitle:
How One Woman Transforms ‘No’ Into the Next Opportunity Again and Again

Transcript:

Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths.

Let’s go.

Welcome back to Pushing Forward with Alycia. Our guest today reminds me of a few words: grit, purpose, impact, mama fighter, and beautiful woman too. May I add, Becky Jackson Curran. Welcome to the show. I am so excited to have you. Let me do a little introduction of you before you jump in. So, I’ve admired this woman from afar for quite some time.

We’ve passed on LinkedIn a lot. We’ve met once. She is an amazing advocate, speaker, media consultant, and she has spent her life changing the way the world sees disability. She’s a congenital disability like me, that is visible. I’m gonna let her talk a little bit about her journey. But I think her and I bond in a lot of ways from that perspective in itself.

She has a very impressive career. She’s worked with creative agencies, CBS Television. She worked in the equity and inclusion department at SAG, supporting national diversity initiatives. She’s the founder of Disability in Media. She’s worked for incredible organizations.

I can’t even get through the long list. But she serves on boards and committees, and she is just a beautiful advocate and she’s got a lovely heart. More importantly, she’s got a really deep story where she walked through personal loss, and health challenges, and struggling with overcoming bias that was put on her. And, I’m just really excited for her to be here and tell her incredible story. And I’m happy to connect as women who have rolled and walked through this path our entire lives. Welcome my sweet friend, Becky, to the show.

Becky Curran: Thank you for having me. You gave me all the feels in that introduction. I’m happy to be here.

Alycia Anderson: That introduction was all you sister. I have literally been admiring you for so long, and it’s been really incredible to watch your journey over the last few years that our paths have crossed. Give a little brief look back at who you are, share about your disability, whatever you’re comfortable with it, and let’s get a little backstory on who Becky is.

Becky Curran: Course. I am someone with achondroplasia. It is the most common form of short limb dwarfism. I’m part of the little people community. We are only 0.008% of the world population. So when I walk into a room. People judge me based on my appearance, or they may judge me if they’ve seen something in the media that’s a negative portrayal.

Historically, we’ve been portrayed as elves, leprechauns, munchkins, you name it. Sometimes, there are some authentic portrayals of people like us. And then maybe someone will be respectful and open to getting to know us and our story. But it’s rare. Most times when I walk in a room or if I’m in a crowded area like a major city, New York, or LA, or anywhere where there’s a dense population of people, most likely there’s gonna be at least one person pointing, staring, and laughing at me. And that’s just the reality of my life. I was given a virtual shield from the family that raised me. My parents, when they found out that I had dwarfism. There’s no history of dwarfism in our family, but 80% of people with dwarfism are born into families with no history. So that’s included in my situation.

Alycia Anderson: Oh.

Becky Curran: My parents from day one, even though they didn’t know what my diagnosis meant at first, they were gonna commit to give me the best life possible knowing that there were going to be challenges. And there was nothing we wouldn’t be able to face together. And that was an intentional decision at an early age that has impacted my life and the way that I am today. There was nothing I couldn’t do when it came to the goals and dreams I set within my household. But once I left my household, the world continued to tell me that there were things I couldn’t do. And I continue to prove them wrong and also ignore those negative comments, because I’m not gonna let those bring me down.

Alycia Anderson: Laughing blatantly in front of you. That is a statement right there.

Can you talk about that a little bit? I get stared at.

Becky Curran: Yeah.

Alycia Anderson: There’s blatant actions, but the laughing and the snickering is not one of them.

Becky Curran: I think we are the last community of people where it seems socially acceptable to laugh at us. I think it’s because the numbers are so rare, that the percentage is so low, that sometimes people’s quick reaction when they’re fearful is laughter.

Alycia Anderson: And how do you combat that?

Becky Curran: I am hard of hearing in my right ear, so there are times where I just don’t hear it at all. A lot of times it’s when someone who cares so much about me, who’s with me, notices someone doing it.

And the easiest thing for me to do is ignore it, because I also have to watch out for my personal safety.

I’m a four foot woman. I can’t really defend myself if I start getting into a banter conversation with someone who most likely isn’t gonna change their mind. I decide every day who seems worth educating or nothing will resonate because they’re set in their ways, and that is a deeper problem of their own insecurities.

Alycia Anderson: Yeah, and I think a lot of us do the same thing. I do a lot of ignoring myself. But, I think the education that general society needs about being so blatant, that is an education that we are far from understanding and accomplishing, and that’s terrible.

Becky Curran: Photos are another thing that’s big in the community. People just wanna take photos of us.

Alycia Anderson: Oh, wow.

Becky Curran: They either think we’re one of those people on TV, even though we’re not all the same person, or just for their own humor. I, again, try to protect myself with that invisible shield, and I think I’m just being myself.

So they’re gonna look silly if they end up showing that picture somewhere, because I’m doing nothing more than being myself. But there are people within the dwarfism community that do get impacted, and it takes a toll on their mental health.

Alycia Anderson: What’s a better way for somebody to handle that for you?

Becky Curran: Come up to me, ask me to have a conversation. And if we have a bond of sorts, maybe there’s an opportunity to take a picture together, but not if it’s for amusement purposes.

Alycia Anderson: You are quoted in saying, “I never wanna change who I am. I want the way the world reacts to my differences to change.” Are we unpacking that there, or is there more to unpack? Can you talk about that a little bit?

Becky Curran: There’s a lot of talk in the dwarfism community, and a lot of science and research that is related to maybe helping someone with height. We don’t have a ton of evidence on other things that it may be helping with. Is it preventing some of the medical complications? I can’t lie and say that my medical journey has been easy. But when I think of scenarios like that, I’m very fortunate that I was born in a household where I was loved unconditionally, regardless of my height. But I think there’s an underlying issue that people are trying to change to fit into the world. A lot of families, I hear them say, “The reason my child opted into this intervention was because they wanted to be at eye level with their peers.” And I think there’s a deeper issue rooted in that. I can still have peers and good friends who are taller than me. My tallest friends in high school were the ones that would wait up for me when I was walking slow. I was joking with one of them the other day and I said, ” Do your knees hurt? Are you okay from waiting up all those years?”

And she’s now even super vigilant about it when she’s around other people who tend to walk slower. We’re many states away now, so I don’t see her on a regular basis. But it made me realize, especially knowing that the friends who were really tall, were the ones waiting up. There’s nobody that can’t do that gesture. There’s nobody that can’t just slow down, and wait up, and make me feel included. And I don’t understand why people would need to be at eye level with their friends, because if they’re friends, they’re gonna accept them regardless.

Alycia Anderson: Yeah. And I think that’s a bias or a ableistic thought, that it needs to be that way. Like you can only be friends if you’re at eye level. And that’s funny. My friends were on the opposite side. They learned to walk really fast because I was always rolling really fast.

But the same thing, like making sure they’re keeping up to all be together, and in community. So that’s super beautiful. I love that.

Becky Curran: More recently, I use a scooter to get around, especially long distances, and I’m flying ahead of my parents and my PCA. It has also motivated me to try to use my crutches and walk places, especially if people are gonna be walking slow anyways. Might as well get that exercise rather than relying on it.

But I know not everyone has that opportunity. But exactly whatever speed you’re at. I’ve been writing a lot and whenever I get to a point where I’m saying, thanks for walking this path with me, I second guess it and I’m thinking, “Okay, thank you for walking, or rolling, or taking this path.” Really unpacking. And another thing I’ve been doing is trying to take the word “small” out of different parts of my writing. It was a small gesture, but it meant a big thing. I don’t love that. Even the TV show, Little People, Big World. Why do we have to get so fixated on height? It’s not something that we need to be fixated on. It’s the person, what’s inside that matters most.

Alycia Anderson: I know, and that’s the thing that’s missed the most. We get stuck on these things, or these words, or these assumptions, right?

So, I’m just gonna go there and I want you to fill in the blanks, wherever you’re comfortable, but we were just talking about it before we jumped on this. And I wasn’t even gonna go here right away, but you keep mentioning your health, and your health journey, and your journey in general, your personal journey with your disability. From growing up to dealing with the health challenges that you have had, and even with your son, becoming a mom and the whole thing.You are so authentically authentic with sharing your story and your journey when it comes to your body and your experience.

And I think it’s really beautiful. And it makes me feel very personally attached to you, even though we’ve never even met in person. But I think it’s really beautiful how you share your story. Especially the last few years when you’ve been overcoming a good amount. Scooter to walking. The whole thing.

Can you talk a little bit about that?

Becky Curran: Yeah.

Alycia Anderson: How you share your heart and your journey of your body. it’s incredible

Becky Curran: So I had mentioned how my parents did a great job at building a supportive environment in our household, even in my early years of schooling. I had surgeries. We went to the best doctors in Baltimore. We traveled from Boston, made sure I had the best care possible.

I have an average height older sister, who we’ve continued to have a strong bond with. You sometimes see in families if there’s a child with a disability and then there’s a child without a disability, the one who has more medical needs may get more attention throughout childhood, and then there may be some resentment.

But my parents did a really good job at balancing things out. So when I was really young, I had ear tubes, tonsils, and adenoids. I think of those as the traditional type surgeries that other people have, too, but because of my narrow ear canals, it did call for more ear tube surgeries. And I had a back brace for a little bit just to make sure my body was aligned. So if you look at me in a room, if I’m sitting down, I’m the same height as most average height people sitting down my average height torso. But it’s my shorter arms and legs that make everything within my torso more compact, ’cause they don’t have room to stretch out. So something that’s very common within the dwarfism community, especially patients with achondroplasia, is spinal stenosis, where the spinal column is pinching up against the spinal cord. So it was a known fact that could be an issue at any point in my life. And when I was three, I was bow-legged. So, I had bone taken out of my legs. And then when I was 13, I had bone put back in. And that all could have potentially impacted my back alignment in the way that I walk. But those surgeries were done, and there weren’t any added complications.

But then when I was 15, I was actually in a sailing race and I was wearing a wetsuit, and I started to feel numbness. And I keep talking about wearing the wetsuit because sometimes a wetsuit could just be tightly fitted. I thought that maybe it was just that, it was a one-off experience where I felt a little off. But it was the beginning of symptoms where I lost my ability to walk, and I started to lose a little bit of bladder control. So when I was 15, I was terrified of falling back in school because I really had made it to a point where I was in all honors classes, getting really good grades, on track with all my friends socially. It was the worst time to have a setback. But as we know, we can’t prepare for these setbacks, so I had to make the decision to have surgery that could either make things worse or better. And I missed 29 days of school, which was devastating for me.

I was less afraid of the surgery and more afraid of missing school. But fortunately, I was able to get back on track. All my friends. Physical therapy, didn’t really have any. It was a laminectomy, where seven pieces of my vertebrae removed to release the compression. Didn’t have a ton of symptoms, a little bit of a bladder leak.

I’m just open about it, as the challenges that come with the spinal cord. Complexities. So, socially, I knew to wear a pad every day, and that was just what I did. And those symptoms, at least the numbness symptoms, did not resurface until about 18 or so years later. I was living in New York City. I started to feel a little bit of discomfort as I was walking long distances. I also think New York City’s a place where you’re overexerting yourself, ’cause you’re so excited to see all that’s around. I did see a doctor while I was living in New York just to start keeping an eye on those returning symptoms, and it was recommended.

If you want to have a second surgery, you have to think long and hard about it, because the risks are even worse than that first laminectomy surgery. Especially if you’re gonna do a revision in the areas that were already worked on, because it would have to be a spinal fusion. Taking out more bone could cause spinal column to collapse, so you need to get a fusion in order to secure it. But there was just a lot of risk, and I had to continue to think about if surgery was necessary. Was now the right time? Also, a thing to think about now, for me looking back in the timeline that I went with. If I had surgery earlier on, there would be less time for the compression of the nerves. And maybe some of the things that have not returned for me could have returned, but we don’t know. So, I went to that doctor. Then I went to another set of doctors in Delaware. They were known to be doing the best work within the dwarfism community. And I found out that, I think I was around 32 at the time, I could go to them until I was 35. Some children’s hospitals have made an exception to allow you to go there, especially as a patient with dwarfism, our short stature. But after 35, I think the level of liability changes. So I kept going to them and they said, “You’re crazy. You keep coming every year. You don’t have to come this frequent.”

And I was just staying on top of it. Because once I turned 35, it was like I was sent out into the wild, and then I had to find a new care plan if something came up. And I never really got a chance to find that next person to go to. So I just tolerated the symptoms, ’cause they didn’t feel life threatening. And I think with the pandemic, I didn’t exert myself as much as maybe I would’ve if we didn’t live through a pandemic. And then speaking of the pandemic, during that time, right before the pandemic, I got married and then I got pregnant. And one thing I mentioned when I started sharing this medical journey story, is that my average-height, older sister, she was always meant to be a mother, and I knew she would be an amazing mother. For me, it wasn’t really talked about in our household. My parents didn’t wanna pressure me to feel like that was part of my path, because I didn’t really know what my body would be able to handle. But once we found out I was pregnant, of course everyone was thrilled. A little cautious, making sure that I would be able to be safe the whole way, especially since I had some of those previous back symptoms. They could get worse or they could just stay at bay. And I think because of the pandemic and not going out much, not over exerting myself, I had the smoothest pregnancy one could have.

Alycia Anderson: Oh, just sit with that statement. ” As a disabled woman, I had the sweetest pregnancy ever.” Just even sitting with that thought right there is incredible.

Becky Curran: I didn’t get sick at all. I powered through and I made it. I had one craving, scalloped potatoes randomly. I just remember one time smelling the trash, just maybe ’cause the trash can was open, and I was like “ugh.” Borderline sick. But that was it. It was just the smoothest experience.

I did end up having nine ultrasounds, and stress tests, and everything we needed to do to keep the baby safe. But for all intents and purposes, it was a very smooth pregnancy.

Alycia Anderson: So before we go on with this story, ’cause I want to. I relate so much to what you just said because I have a sister too, and she’s had her family, and done all the things. When we were growing up, my dad was so excited for her to one day have kids. But the same thing.

It wasn’t just not talked about. It was like, “Alycia, don’t do that. Do not do that. That is not gonna be good for your body. Don’t do it.” This is why I love our friendship so much, ’cause we have such similar, but different stories. And I got pregnant twice myself.

And I could only get so far in the pregnancy, but I never thought that I would be able to roll around and go, ” I’m pregnant.

Becky Curran: Right.

Alycia Anderson: This is amazing.” So, when you said, “I had the sweetest pregnancy,” it’s so beautiful. Okay, so please continue on.

Becky Curran: I remember I have an ultrasound photo of where he is starting to suck his hand, and it was just sweet. So one of the benefits of having nine ultrasounds is that you get a lot of great pictures.

Alycia Anderson: Yeah.

Becky Curran: So, 39 and one, I had a c-section right before going to the hospital where Jackson, my son, was going to be born. I did a consultation just to make sure they had all the accommodations I needed. We got some hospital gowns altered. We found a bassinet, that’s called a halo bassinet, that could be bedside, or it could just be a short height for me to access Jackson. We made sure that the anesthesiologist was prepared for the procedure.

It was like I was doing an interview the day of, because they were willing to switch the person out if they didn’t pass the test, even though I was starting to get medicine as I’m interviewing the person. But what I try to look for, is there any experience with any type of patient with dwarfism? Do you have that knowledge and understanding that we are complex, and are you prepared to intervene if something were to go terribly wrong? So the person passed the test. She had my name, Becky, so that also helped.

Alycia Anderson: Oh.

Becky Curran: And I did general anesthesia, so I didn’t meet Jackson right away. But I was able to meet him about three hours after he was born, and he immediately went to the NICU. It may be related to the fact that he was in a smaller space within my stomach. There are other people with dwarfism who maybe can bring their child home right away, but he needed a little bit of assistance with breathing. We ended up spending a total of 23 days in the NICU, and we had to make sure that he could safely come home, which led to bringing supplemental oxygen home, so he could have it while sleeping. But for the first three months, he relied heavily on it because there weren’t many times where he wasn’t sleeping. And I look back to think, “Okay. Were we just fearful? Were there more times where we could have taken the oxygen off? But we just didn’t know what would happen.

As new parents, you’re freaking out. Not sure how to handle it. He also had hydronephrosis. Actually, there’s no huge correlation between dwarfism and hydronephosis. It just happens among babies where the tube from the bladder to the kidneys is too narrow, and most likely he’d need medical intervention at some point in time. So right when we left the NICU, they discharge us at 4:00 PM and we have to go pick up an antibiotic at the pharmacy, and then also meet the oxygen people before 6:00 PM. And then it’s, ” Good luck, now you have a baby!” We also had to figure out how we were going to safely feed him and carry him. Because most of the furniture in any given environment is up high, so we don’t wanna really be climbing while holding him.

So we had to find at HomeGoods, they have children recliners and we started with those, and then eventually found gaming chairs. And that was a game changer because the children’s recliners were a bit narrow for my big butt. But because of the adrenaline with Jackson and just the additional care that he needed. He was a baby who also had achondroplasia like myself. And because of just everything, somehow things were working in my favor and my body just went back to where it needed to go. And I continued to be free of those initial symptoms that I was feeling related to the spinal stenosis. I like to be transparent about the fact that Jackson’s first six months weren’t easy. We had about 82 days of different types of appointments, whether it was early intervention, a visiting nurse, speech, for feeding, or just orthopedic appointments. Things were tough, but they had the potential to get better. We ended up taking Jackson for a sleep study and car seat test. So up until that point, he was in a car bed because he couldn’t tolerate being in a car seat without his oxygen levels dropping. And something that’s common with people with dwarfism is weaker in the neck. They call it the foramen magnum, and the compression that could be happening early on, behind the neck. And even the strength, because our heads are so big, like trying to keep your head up versus down. So while we were at the hospital, inpatient in the NICU, when they do a car seat test, it’s during the day, and they’re allowing you to have the lights on. We would go and have a meal while they did the test. So we didn’t see the whole thing, but we knew that it was during the day, and his saturation levels went down. So they said that he failed the test and we had to continue to try. But they joked that the school bus doesn’t come to the NICU. So we were gonna be able to leave eventually, and we were able to leave because we had him in a car bed, so he could get safely to appointments. We were hoping that this six month appointment would allow us to pass the car seat test so we could go in a regular car seat. And then with the sleep study, maybe he would no longer need oxygen because his sleep apnea had gotten better. That was just the dream scenario. So we get set up in this outpatient setting. It ended up being in an area of the hospital that wasn’t even the sleep lab, that was just like a backup area. And we were getting him ready for the sleep study and car seat test. So they put on the whole headdress for the sleep study, and then they put him in a car seat to do that test first. So his head is already super heavy. And then they’re trying to get him to go to bed when we had a certain schedule at home or we did a feeding before we got him in bed for the night at 11. But this is at 7:30, and they’re trying to get him all ready and sleeping. So of course he’s all outta sorts crying. And then once they got him settled, he wasn’t breathing. That’s the reason

Alycia Anderson: Oh my God.

Becky Curran: he got settled. They looked at the machines and didn’t look at him, and he had gone 30 minutes without breathing. So, code was called. The staff sent me to another room, so I was in the room the whole time. But because he was higher as a person with dwarfism, he was in a higher bed.

I couldn’t keep my eyes on him. And the sounds, the machines were in the other room where the techs stay ’cause they want everyone to be able to sleep. So he wasn’t breathing and I didn’t know. The staff finally pulled him outta the car seat and I thought he was joking. I thought it was like a jokester moment, like he’s just being his silly self. I had this idea in my head that it just couldn’t be real, and they then sent me to another room. And it was about an hour or so that they said he’s now in the ICU. We were able to get breathing and a heart rate, but the breathing was with the breathing tube and a feeding tube. And basically that was all they got. So it was 12 days trying to figure out what the heck happened, and how do we give Jackson the best care possible while he’s still here? I somehow thought that after 72 hours, ’cause usually if there’s brain damage, you keep someone still for 72 hours and then you see really the entirety of the damage. In my head, again, I was thinking, “Oh, a miracle. He is just gonna wake up in 72 hours. When we get to that moment, he’ll wake up.” But nothing changed. And when it got to be about the 11th day, his heart started acting up. And the nurses asked, “Okay, you’re not here at night.” Just ’cause I had to get away from the hospital and go get some sleep at a hotel. ” What do we do if his heart gets funky? And that kind of influenced the decision to the next day, the 12th day, to take the tube out, spend the whole day. I treated it like I was going to a party. I went to dry bar, got my hair done. Got a new shirt ’cause I was wearing the same clothes for two weeks. Had a bunch of close family and friends around, if needed. It was around 5:30 on March 2nd, and we decided to take the tube out. We had waited a little extra time to see if we could donate any of his organs. But because of his condition, there wasn’t really a need. But we were able to compromise and say, “Let’s maybe do an autopsy where they could use his body for research,” just so it felt like we were contributing something. So it was like two and a half hours where he was in my arms. I got up once to go to the bathroom, but just sat there holding him. My dad was nearby, my husband at the time, and his sister, and we were just watching him die. And I had music therapy from Child Life in the room with us just to try to help with the moment. And I knew that I had really good staff, ’cause in the ICU he was well taken care of. They were all around us. But in that moment, there was nothing they could do other than just watch. And they did administer morphine a few times just to make sure that he wasn’t in any pain. And, when he slowly passed at 8:09, it was significant because eight nine was also his birthday, August 9th. But now since that day, every time I see 8:09 on the clock, it just is like a gut punch and I’m reminded. Some days it hits harder than others, but I think something I don’t talk about enough is the fact that my child died at my arms. Life isn’t supposed to go that way. I’m supposed to die before him. And it wasn’t an easy journey after that. So for the next year and a half, acted pretty fast to see if it was possible to have another child and did not want to go the natural route because there’s risk. Especially two people with achondroplasia having a child who would be double dominant, meaning they wouldn’t make it past a few days if you’ve carried the full term. So after losing Jackson, knowing that there’s also a chance we could have a child that won’t be able to live. How do we play God in a way where IVF could allow us to have another baby just like Jackson? But we went to three different IVF centers over the course of a year and a half. And two of them were unable to help us because they said that they could not identify an embryo as one copy of the achondroplasia gene, meaning they would have exactly what Jackson had. They could only identify embryos that are average height, ’cause of the ethics board. And I think it’s with IVF, you try to take out all thefaultiness of any type of embryo. Then finally one hospital said we can label the embryo patient’s choice. And I felt like I reached the answer I was looking for. But right at that point in time, it had been a buildup. But my body and my marriage were falling apart, so I needed to pivot and put that idea to rest, focus on my body, and my relationship. So that was about in May timeframe in 2023, a little over a year after Jackson had passed. I was getting ready for the summer, going to a little people conference in Austin, Texas, and then another conference in Orlando, Florida. And when I was in Orlando, I opted in to have a scooter, and that was the first time that I ever used a mobility device for myself. I had a friend, Mikey, who had dwarfism, who I lived with out in LA for a while. And sometimes at night, he would gimme a ride on a scooter, but that was the extent of me using a mobility device. So it was a very hard identity for me to lean into, even as a disability advocate. But one of my friends knew that I was worried about the distance of getting from meeting to meeting, and he had suggested, “Why don’t you think about getting a scooter in order to be comfortable?” So I did. And at the convention in Austin, Texas, which was a week prior to the Orlando conference, I met with some doctors to start talking to them about the enhanced symptoms that I was having. And one of them said, “Can you wait another six years?” And then the other one said, “The minute your bladder starts acting differently, you need to address it.” So during that Orlando conference, I was climbing up and down off of a scooter because with scooter rentals, you can’t have it be custom where the seat is low enough. So I was struggling to get on and off the scooter, especially when it came to going to the bathroom. But the larger issue was that I was losing bladder control and I was getting weaker and weaker in my legs. And I don’t know if it was spending a week using a scooter that made things go faster or it was just the timing similar to when I was wearing the wetsuit that things got worse, but you never know.

You have to address it. So instead of going back from Orlando to Boston where I live and where I was maybe going to meet with the doctor based in Boston later that month, I knew that I needed to go to Johns Hopkins, where I had my first back surgery. Not the same surgeon, but a different surgeon who had a good reputation. Of course, she couldn’t clear her schedule for me right away. And that’s why I chose to go through the ER. It ended up being about 24 hours in the ER, got a full spine MRI. And then when I got admitted to the hospital, I saw that surgeon’s photo on the door of my hospital room and I thought, “Okay, we’re on track here.” So I’m in the hospital room. She comes in, tells me that she can do surgery, but not for another two weeks. And I begged to stay in the hospital ’cause there was no way if I was going to the bathroom everywhere and falling every few feet, that I would be able to survive outside of that hospital environment. So it was around July 18th that I was admitted. And then on August 1st, I had surgery. It was a 10 hour surgery, spinal fusion from T11 to pelvis, and then a laminectomy at T5. I asked the surgeon after the surgery if my cord was compromised, and she said no. But time will tell about the function that returns, even over two years later, because the nerves were compressed for so long. So she assured me that I could make the most of my recovery and put every bit of effort into it, and I sure did. I asked for physical therapy whenever I could get it. And I was med flighted to a rehab in Boston where I live because it made sense to do rehab knowing that I was gonna integrate myself back into life at some point here in Boston.

If I stayed longer in Maryland, it would be more challenging to adjust. So I took a plane to Spalding. I was at Spalding for seven weeks. I did leave Spalding without a catheter. But then about a month and a half later, I had a really bad UTI, which was also a kidney infection and pneumonia. And it was decided that I needed to have a catheter. First, it was a urethra catheter, and then that infection I had in October didn’t go away.

So, in December, they put in a super pubic catheter. And, it’s been a journey. As I continue to focus on physical strength, which the doctor had recommended, it was challenging for a long time because I had this long cord in bag for the catheter while trying to build strength. I have gained more confidence to be able to plug and maybe consider surgery down the line for something a little bit more intimate, like Mitrofanoff catheter.

But that’s just something to consider down the line. I still struggle with my bowels as well. I cannot feel my butt. So if I have an accident, I don’t know. So out of Spalding, I scheduled a visiting nurse every day, and I also have a PCA. At first, I had live-in PCAs, which were a nightmare. I was taking care of them more than they were taking care of me, but I was blessed with a PCA, who works part-time, but has been the greatest blessing at this point in my life over the past year and has really challenged me to take my recovery to the next level. We recently started boxing, in addition to physical therapy, and really figuring out every which angle to gain the most strength possible. My surgeon, after the year check-in appointment, also encouraged me to pursue races. For me at least, I don’t plan on running, but even just walking long distances. So I’ve done two one-mile races and I plan to do a 5K. And I think those have been just a distraction of, “I can stay active, I can do this,” and it’s something to work towards. I think it’s really important, even for the rest of my life, to continue to have those benchmarks and goals to work towards, so I don’t feel defeated. And just with Jackson, I want his story to get out there more. Something that’s really complex because it was an accident at the hospital. We sued the hospital. I have the resources now to have the best care plan possible, but it doesn’t make it right or easy. I was just talking to someone yesterday. He was saying you either have to have a ton of money, and manage, and pay for your own care plan, or be on benefits and not make a certain amount of money, and still not know if you can have good care. So that’s a huge topic. And I am working on sharing, even the story of me, and my PCA, and the relationship that we have, because it’s rare for you to be able to find that. And my family is really excited to be on the journey with me.

Alycia Anderson: I think people who are following you are too. You and I met, I think, probably pretty close to after your surgery. ‘Cause I think you had the PCA, somebody was coming in and out of your apartment every day. And to watch your progression of barely being able to walk to everything that you’re doing now.

It’s been unbelievable. And I don’t think I knew about Jackson then. I learned about Jackson through your social media, like last year or something. And to have all of that stuff happen really at the same time in your life. I think this is good advice for our community.

How do you take grief, immense loss, excruciating loss, personal adversity when it comes to your medical? Your body completely changing and its function. How do you take all of those things? One of those things is a massive deal. How do you take all of that at once, and turn it into who you are and the work that you’re doing? And even beyond the work, what you’re exuding into the world, I actually think it’s bigger than disability advocacy.

Becky Curran: You’re exuding possibility into the world, hope out of immense loss. I don’t know how you do it. Can you talk about that a little bit? I’m a product of my environment, so when I’m around negative energy, I get brought down. So I think I almost overcompensate and try to be intentional about bringing the right energy into any given room, because I just wanted to be accepted and welcomed into any environment, even before all this heavy stuff.

That’s how I’ve been my whole life. But you still face a lot of people who just don’t know what to say. So they avoid you because they’re just afraid of saying the wrong thing. Of course, we’re all gonna have bad days, but get up again tomorrow. One thing that happened between my first back surgery and when Jackson died, is I went from having an extreme fear of death to no longer having a fear of death. And I think that plays a key role in how I live, because the fact is we don’t know what tomorrow will bring. That’s always been a fact, but I think I’ve recognized that more after losing Jackson. And how it’s so important to make the most of each day and find ways to bring joy into each day, and even do the silliest things.

My friend, Mikey, who unfortunately passed away from ALS, was my roommate for several years in LA, and we just had the best time just joking, laughing, doing whatever it took to lift up each other’s spirits. And I think about him and how his life was taken way too soon. And how we can’t just bring heavy baggage to the rooms we enter in, because we’re not gonna get what we need done. I also feel this huge weight of responsibility to represent the dwarfism community in every environment I enter. So it’s hard for me to, again, bring that negative energy if that’s still how we’re perceived. But I don’t want people to feel bad for me. A lot of times people come up to me and say, “I had this happen to me, but it’s not as bad as what happened to you.” And that’s one of my biggest pet peeves. Because you know what, a challenge is a challenge, and we all are equipped to handle challenges differently. So please, let’s just figure out how to learn from each other, and grow together, and make change. I think even as I look back about building more awareness about what happened to Jackson, it’s not to continue to shame the hospital, it’s to educate people on how to do better going forward.

Alycia Anderson: That’s so beautiful. How to do better going forward. Okay, we need five hours for this episode. Before we wrap up, I want to give you a minute to tell our audience. We have a lot of corporate listeners. I want you to pitch yourself for a minute so you have that opportunity. This girl has spoken on 650 stages.

Alycia Anderson: I’ve been on 200. I thought I was getting well established. No, not even close. So will you just pitch a little bit what you do? How companies can get a hold of you? We’re gonna leave out all of your information in our show notes. Your story is massively impactful, not just in a personal and cultural standpoint, but also from a corporate and business standpoint.

So give us the elevator pitch.

Becky Curran: Just call me Becky.

Alycia Anderson: Ah, I like it.

Becky Curran: People get so caught up in the terminology. I think if you call me Becky, we can get to know each other and realize we have more in common than we don’t. And also, I wanna teach others to turn those “no’s” into the next opportunity. In my household growing up, I wasn’t told no, but in outside environments I was told no.

But because the household impacted the core of who I am, I wasn’t gonna let those “no’s” define who I am and what I decide to do with my life. When I moved out to LA right after college, so many people went up to my family and said, “How could you let her do that?” If they didn’t let me do that, there would be a lot of resentment. They were taught from an early age from one of our doctors, “Let her go out there and fall. Because that’s the way she’s gonna learn and grow.” So really, I want to use my life skills to teach environments on how to get out of their own way and accomplish what they may think seems impossible.

Alycia Anderson: Is that your pushing forward moment? Let your “no’s” be your next opportunity.

Becky Curran: Yes.

I love it. PowerfulGuess who guided me on that one?

Alycia Anderson: Who?

Becky Curran: Our mutual friend, Dustin.

Alycia Anderson: Oh, I love this.

Becky Curran: But it really is. It’s using my life lessons to help others. And I don’t want my message just to be for disability audiences. It’s preaching to the choir. And let’s dig deeper into the fact that I have the motherhood journey. I have the professional journey. I can relate to all audiences.

Alycia Anderson: Yeah, you can. Becky, thank you so much for sharing your beautiful story on this podcast. I feel like I was just totally engulfed in the entire thing. I haven’t heard it line by line yet, so I really appreciate you coming on and being as vulnerable and authentic and real and just open. Thank you so much. What a gift to our world you are, honestly.

We’re gonna leave all of your information in the show notes. We’re gonna have to have you come back on to have another conversation about speaking, and writing,

Becky Curran: Of course.

Alycia Anderson: And advocating in all the things. But you’re doing great work, and thank you so much from my heart to yours.

Becky Curran: Thank you.

Alycia Anderson: And this has been Pushing Forward with Alycia.

Thank you to our community for showing up again. Pushing forward is how we roll on this podcast. We will see you next time.