Nirali Chauhan (she/her) is a first-generation Gujarati-American living in Chicago. Known for her appearance on “The Great American Baking Show,” Chauhan is overcoming a past traumatic brain injury (TBI), the consequence of a roadside accident.
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As a medical student and certified meditation teacher, Nirali is passionate about helping others on their own personal journeys of healing and joy. Brown Girl Magazine had the opportunity to sit down with Nirali to discuss her lived experience, her TBI journey and the importance of not being hard on yourself while celebrating one’s wins.
Experiencing a traumatic brain injury (TBI) is a life-changing experience and comes with many transitions. Can you share your story about what happened?
In the fall of 2015, I was a pre-med student in my last year of college at Johns Hopkins and I had returned home to the Chicago suburbs to observe the anniversary of my dad’s sudden passing. On that day, exactly a year after he passed away, while my family was preparing to visit our local Shirdi Sai Baba temple, I was struck by an SUV as a pedestrian. It very much looked like a scene out of a Hindi film or serial. My screaming neighbors and family members all watched first responders tend to me on the scene as I was bleeding from my head, in my white kurta, on the pavement. It was at a subsequent emergency room visit that I was diagnosed with a mild traumatic brain injury. As my symptoms persisted and amplified after the injury, I was diagnosed with a catch-all condition called post-concussion syndrome.
The Shirley Ryan AbilityLab is known for how impactful it can be for in- and outpatient rehabilitation. Can you tell us about your experience there ?
Unable to find the right medical team, I attempted to piece together my own care plan for years before finally landing at Shirley Ryan AbilityLab by sheer luck. There I worked with two outpatient physical therapists and a speech therapist who were all coordinated by a physical medicine and a rehabilitation physician. When I began care with them, I was significantly struggling with activities of daily living due to impaired proprioception, mobility, and chronic pain.
My therapists helped me re-learn how to walk with visual stimuli, track visually, pivot, look up at the sky and bend down to pick something up. We worked on a lot of muscular and vestibular coordination, especially in the neck because my injury impacted my tailbone and head. Today, I’m still in speech therapy. My speech therapist, Marie, helps me with cognitive pacing and daily energy management strategies because I still live with a lot of symptoms, including pain management, audio and visual sensitivity, vestibular challenges, and fatigue. That said, the two years of concentrated care where I dedicated my time to physical therapy and recovery at Shirley Ryan AbilityLab completely changed my life: they gave me my life back, and I can’t imagine doing anything I’m capable of today without their care. I’m so, so grateful for them.
What was the emotional process like for you and your family once the TBI occurred and then after it?
The emotional aspect was an unexpected challenge. It was always pretty clear that there was a long road ahead of me as far as functioning and physical rehabilitation was going to go, but the emotional part is something that I could have never predicted. But as you can imagine, there was very little about my pre-injury life that I could continue to do because overnight my life had changed and I couldn’t really do the things I used to do or be the person I was used to being.
I remember being very active in college: I was an exercise instructor, a resident advisor in the dorms, a teaching assistant for the organic chemistry lab class; I volunteered after school, and started developing my passion for nonprofit work. All of that became really, really challenging after my head injury. I was no longer able to exercise or socialize. And, as I continued to not be able to engage in what made me happier, what I associated my identity with, I found myself losing purpose and a sense of who I was. There was this moment of “who am I if I can’t do all of these things I’m used to doing?”
It was also incredibly tough for my family to see this drastic change as well because they were so used to seeing me as a happy, active, and engaged student, daughter and sister. But the support of my family is what helped me process emotionally. Throughout the experience, I’ve never wondered, “why me?” I have always felt deeply lucky in my life. So when the injury happened, even after my dad passed away, I remember thinking, “why not me?”
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You’re currently a medical student and were previously on the “Great American Baking Show.” How did your experience with your journey impact the trajectory of attaining these goals or participating in the experiences?
Before my dad passed away and my accident happened, I felt like I understood the timeline my life was going to follow, because up until that point, it had followed a blueprint. My brain injury really forced me to reconcile with the idea that there would no longer be a predictable timeline, and that can be disruptive to one’s sense of self and one’s goals, whether they’re professional or personal. And while it was a huge challenge to kind of let go of who I thought I was, and what I thought I was going to be, which at that point, was going to medical school to be a physician, (I’m very lucky to be a medical student now on a different timeline), it was also incredibly liberating because I was used to doing things by the book. I am somebody who loves excelling; I like knowing that my efforts are going to, or usually will, pay off if I go in with good intentions, hard work and discipline. Once I decompressed what I thought I needed to do on a preconceived timeline and that I needed to do it, so much more life was available to me, which was amazing. I genuinely believe I am a better person and will become a better physician because of my experiences as a patient.
As for the show, I began baking on a larger scale during physical therapy when I ran bake sale fundraisers out of my small apartment kitchen for causes I cared about including the Chicago Community Bond Fund, KEEN Chicago, United Way of India, Razom for Ukraine, and more. I had never ever conceptualized that I’d want to be in a televised competition; a baking show of all things (a show I loved watching while in recovery, by the way!). But when the opportunity to apply presented itself, I again asked myself, “why not?” Why not go on a baking show and do something that I love, which is to create something delicious and yummy that I get to share with other people, that honors a lot of the childhood memories I have, and incorporates flavors and scents and colors I love. And it [the baking show] was a real celebration of joy because it had come towards the end of my time at Shirley Ryan AbilityLab. It felt like a big celebration of the amazing work that was done there; a way to truly honor the people that cared for me there.
Is there anything you wish you would’ve known prior to your traumatic brain injury? What about after your rehabilitative experiences?
There was a significant amount of time between my injury and me realizing that there was a ginormous community of folks impacted by brain injury. I wish I had known that was the case. I wish I had known that traumatic brain injury is incredibly common; and that brain injury medicine is still very young.
When I was struggling with managing my symptoms in grad school in New Hampshire, I came across an organization called The LoveYourBrain Foundation. It was the first time I had met other people like me who were living with similar difficulties. And when I finally met other people like me, gosh, I can’t even describe what that felt like because for so long I felt alone. But then suddenly, I walked into a room where people understood that the lights are too bright, or when there’s a celebration, I don’t want to clap because the sound of clapping is harsh on my ears, or that, you know, the upcoming wedding that I was excited to attend I was actually kind of fearful of because I knew that it was going to be really challenging when I came back home from all that stimuli. To be understood by a group of people that I’d never met before was so incredible.
LoveYourBrain, whose mission is to offer free accessible and adaptive yoga and mindfulness for brain injury and concussion, reintroduced me to movement. At the time, I couldn’t really twist my spine, bend, or do a lot of the asanas I was used to doing and so I would practice yoga in a chair. The group discussion that occurred there helped me build the tools I needed to feel comfortable with sharing that I have a TBI and that I struggle on a daily basis and require resources. They were so amazing in transforming the relationship I had with my new normal; I published my Master’s dissertation with them on best practices for adapting and delivering community-based yoga to people with TBI. The experience helped me create a meaningful connection between who I was — who is a really academic person — and who I was becoming — someone for whom a traumatic brain injury has become a huge part of their life.
Later on, I became an ambassador and meditation teacher for them, and now, I serve on their advisory board. That evolution with Love Your Brain is so meaningful to me. I just wish I knew about those resources earlier on and that a lot of people are like me. It would have helped me so much
Can you tell us what it was like to adjust to life after finishing your chapter at Shirley Ryan AbilityLab?
I think so much of my life now is managing my energy. I learned how to become an advocate for myself, and for me, that just means being candid about the amount of energy that I have to do something or if I need a little bit of time away for myself. A lot of the skills I was taught at Shirley Ryan focused on my self-identified goals regarding quality of life. I now have a lot of tools that help me in real time so that I can interact with other people or do things on a daily basis in the ways that I want. That was the biggest part of my therapy actually; making sure that I had a lot of personalized tools to help me manage on a daily basis.
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As a South Asian American woman and a woman of color, is there anything you wish you would’ve had more of across your recovery journey or anything that raised questions for you regarding the healthcare services you received?
In the South Asian community, there is a deep reverence of physicians. I had grown up thinking that one doctor’s opinion was the ‘be all end all.’ Through my brain injury, I learned that only I knew my body and what I was experiencing on a daily basis. I had to become comfortable with seeing many physicians or getting second or third opinions. A lot of the people that I meet, especially through the LoveYourBrain community or other brain injury communities, go through multiple layers of care until they find the right physician(s) to guide them through their care.
I think there’s a cultural imperative to not second-guess what’s being said in a medical setting. The implications of that can be really challenging with a brain injury because we don’t know that much about the brain. Finding a care team that validates the experience that you’re having, that sees you where you’re at, and has the appropriate resources, is so important. We’re so fortunate we have so many amazing South Asian physicians, and a lot of them will be your friends or your family members. That said, I cannot stress how important it is to cultivate a formal physician relationship because the management of chronic diseases and chronic conditions requires a lot of insight into who the patient is over time, medically speaking. I don’t think it’s possible to achieve that through family and friend relationships, who can still be amazing resources for things that don’t require a lot of longitudinal interaction or face time.
I’ve had informal interactions with physician friends that almost made me not want to re-interact with them again. I didn’t feel comfortable: you don’t have the same privacy rights, healthcare rights, etc, as you would in a formal setting. If you have access to care and resources outside of family, friends, or community, I think it’s to everyone’s benefit to find a formal care team that can help you for the most productive, patient-centered care.
Culturally, there are a lot of topics that “we don’t like to talk about.” Was it difficult to find ways to inform family members or have certain conversations about your injury or the therapies/services you were receiving?
My family is very close and they’re my predominant support system. While conversations weren’t necessarily tough there, there were certain instances, like on my dad’s death anniversary, that were tricky to navigate. We were hesitant when the injury happened because of the fact that it was my dad’s one-year death anniversary. To us it was a coincidence, but we were reluctant to share details because we didn’t know how folks in the South Asian community would interpret it; perhaps it would be regarded as a karmic event or something similar. Sharing what had happened while we were still processing it ourselves, especially with how sudden the injury was and how it happened after a very tragic event in our family, felt difficult to communicate at times. Sometimes conversations would start because [laughs] a big part of our culture is touching our elders’ feet and I couldn’t do that or bend forward without feeling sick.
I was met with a lot of well wishes and condolences, but also a lot of questions around what my plan was now and how I was going to succeed. I felt like there wasn’t much room for failure in my greater community even though that wasn’t necessarily true within myself or within my immediate family. Since productivity and success are noteworthy markers of people around me, it became so hard to communicate how my life plans were on pause and that my goals would be delayed. I often felt like people thought that maybe I wasn’t dedicated enough or hard working enough; that if I had applied myself a bit more then maybe I could overcome what was happening to my body.
My family and I knew that wasn’t the case, of course, and we could have reacted in a lot of ways. The way we chose to respond was to become vocal and honest about what I was going through and how my life had changed. We gave examples of things that were challenging for me and what I was working on, so that folks would become more aware of what a brain injury could look like and what it did look like for me. Creating conversation around my experience was very positive, actually, and it helped me feel closer to my family and my community while giving me space to be more open, unguarded, and joyful.
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Do you have any advice for South Asian women who have experienced TBIs and are struggling with adjusting, seeking out services, and/or support?
My hope is that conversations like this become more frequent to increase awareness around brain injuries and how they can impact daily life. There are millions of people that experience traumatic brain injuries every year and surviving one can feel very isolating. Sharing experiences and resources is imperative so others can tap into their resilience, improve their quality of life, and meet their full potential. Imagine if we asked to accommodate disability as frequently as we do diet in the South Asian community. Indian functions, or gatherings, are a huge part of our culture, and just like any other setting, accommodations can be made so that those of us with traumatic brain injuries and other conditions can still attend and be a part of the greater community. I feel like there are opportunities for us to check in with people about their capacity and whether there are any access or accommodation needs that can be met. I also think the earlier you can validate your experience with traumatic brain injury, the better — finding a care team that sees you and honors your experience is critical. Finding a community is just as powerful: LoveYourBrain was a huge resource for me and I can’t recommend them enough.
Above all else, I think being very kind as you remind yourself how complex the brain is and the many ways damage to it can affect you is crucial. We can be really hard on ourselves, especially when we don’t recognize what’s going on and all systems are down. I remember committing to myself that I would try to just treat myself as if I was talking to a younger version of me. I’d imagine myself in the youngest state that I could remember and treat my current self how I would treat her — with kindness and patience — and I continue to do that. This practice helps me reconnect with my innermost self while building a strong foundation for self-worth and love, and, ultimately, recovery. All journeys toward recovery from a TBI are different. Mine has come with highs and lows over the past nine years but, importantly, I’ve gained tools to better manage my limitations, my symptoms, and my engagement within my communities. I’d suggest to anyone who shares a similar experience with me and my brain injury to seek out helpful resources so they too can continue celebrating their wins while living with a TBI.
