Meet Nora Ramirez

Alright – so today we’ve got the honor of introducing you to Nora Ramirez. We think you’ll enjoy our conversation, we’ve shared it below.

Hi Nora, thank you so much for joining us today. There are so many topics we could discuss, but perhaps one of the most relevant is empathy because it’s at the core of great leadership and so we’d love to hear about how you developed your empathy?

My level of empathy has been greatly influenced by two main things: hardship, and connection. I do not see it being as developed as it is today without both of those things. Hardship showed me what it feels like to be vulnerable or emotionally broken, and connection has taught me how significantly powerful it is to feel seen and to have someone show up with care. Living with a progressive life-limiting condition from birth meant that I became very aware of limits early on in life, not just by my own limits, but also witnessing those of my three older siblings who were born with the same rare genetic disease, SEPN1. I have spent a lot of time needing help, being the helper, and also watching and learning from my family and strangers helping each other. When your childhood and the rest of your life involves doctors, fatigue, medical equipment, side effects, surgeries, unpredictability, being misunderstood, and grieving, you notice the smallest acts of kindness. You also start to see the invisible battles people carry; like receiving a pair of glasses that lets you see what oftentimes goes unnoticed, and you can’t take them off. Those glasses play a major role in my hyper-awareness of how I impact others, and how they affect me. This is where connection comes in. My constant conscious and unconscious development of my empathy is also strongly due to the connections I have formed with others. Nothing motivates me more to want to understand, to want to get things done, to want to find a solution, than it involving someone else because of the fact that anyone could be fighting a silent battle, and feeling seen or supported is so important during those moments, and I want my actions and behaviors to reflect that understanding. I do not want my hardships and traumas to be in vain; I want to give them a purpose. So I use my life story and that of my family to imagine anyone else having a similar story and greatly benefiting from any act of kindness or love, the way we have. I am forever grateful to anyone who has ever brought my family even one minute of joy into their lives, because I have witnessed the great battles they’ve been put through. And I have witnessed how devastating it is to be met with unkindness when life’s obstacles have already been crushing enough. Finding my husband and his values aligning with mine also created a safe environment for me to continue developing this side of me, and not just to feel it but to be supported enough to take action. His childhood and life story are additional proof to me that everyone’s stories, whether private or public, need to be respected and met with grace and kindness. I believe that not knowing what someone is going through is not a good enough excuse to be anything but kind. I am always appreciative of anyone’s effort, because for me, the simplest tasks require so much physical effort. So I hope to be that person who can bring even 1 minute of joy or relief to someone else, because I know that, as devastating as our stories are, we are not the only ones. And as much as we don’t talk about it, I know many others don’t as well. Your neighbor, the cashier at a store, your waitress at a restaurant, anyone, anyone could have a story similar to mine or even worse. Because of that, I feel everyone deserves grace. To give someone the grace of wanting to understand them and give them them the opportunity to speak their thoughts and feelings, or simply to give someone the grace of assuming their story might be one you’ll never know of but it doesn’t mean it doesn’t exist, and it doesn’t mean it can’t be full of pain. A lot of my empathy also developed from fighting to stay soft, to keep caring, and to advocate for others, not because it’s easy or comfortable, but because I know how it feels to be overlooked. It’s bittersweet when the one thing that has caused me and my family so much grief and pain, and that has taken so many lives, is the very thing that has allowed me to feel so much empathy. And it is not just a feeling, it is something that greatly influences my actions. Empathy is how I create belonging, for others and for myself.

Appreciate the insights and wisdom. Before we dig deeper and ask you about the skills that matter and more, maybe you can tell our readers about yourself?

I’m a lifelong volunteer, rare disease advocate, and someone who’s recently chosen to become a louder, more visible voice for a community that is for too long often overlooked. While I’ve always had a heart for service, I used to stay behind the scenes. I started volunteering as a teenager with Big Brothers Big Sisters, and over the years I’ve volunteered for foster care nonprofits, animal shelters, Make-A-Wish, and the Muscular Dystrophy Association. For a long time I never talked about the work I did because I didn’t want it to feel like self-promotion; I wasn’t doing it for attention, I was doing it because I felt it mattered. I have always felt that whatever the reason is that I am still able to do things, still able to move, still able to talk, still able to live, I need to give those abilities purpose while I can, because there must be a reason and purpose greater than myself.
But something changed for me during the pandemic. The worldwide health crisis emphasized the overlooked dangerous realities of people with disabilities. While volunteering in disability spaces during that time, I heard so many raw and painful stories from voices that deserved more than silence. And something in me clicked. I realized I couldn’t stay quiet anymore, not for myself, and not for the people I’ve loved and lost. I live with SEPN1 congenital muscular dystrophy, and three of my older siblings had it too. They passed away before advocacy was something they could really get into, and I carry them with me in every step I take forward.
In 2023, I took one of the biggest leaps of my life: I spoke at a neuromuscular medical conference despite being someone who always struggled with speaking at all (I was voted the “most quiet” on my HS yearbook, as an example). It was terrifying, but I did it because I know that sometimes we speak up not just for ourselves, but so others don’t have to. If I can face my fears and use my voice, maybe it makes someone else feel less alone. Or maybe it lets someone rest, knowing I’ve got their back.
Academically, I’ve always been driven by a desire to understand and help people. I hold B.A. degrees in Sociology and Psychology, but before that, I explored many paths, from graphic design to legal studies, nutrition, and medical fields like radiology. Each shift reflected something I’d experienced personally or saw others struggle with. I’ve learned a little bit of everything in the hope of being a better helper, a better listener, and a more resourceful advocate.
Today, I continue volunteering with MDA, Make-A-Wish, and foster care, where I serve on committees and as an ambassador. I’ve also started stepping into new spaces like podcast interviews to use media and storytelling to connect with people in deeper, more visible ways, and also as a way to practice my fear of speaking. My advocacy isn’t attached to a business or product. It’s personal. It’s rooted in love, loss, lived experience, and a refusal to let anyone in my community, or anyone I meet in general, feel invisible.

There is so much advice out there about all the different skills and qualities folks need to develop in order to succeed in today’s highly competitive environment and often it can feel overwhelming. So, if we had to break it down to just the three that matter most, which three skills or qualities would you focus on?

The three most impactful qualities in my journey have been adaptability, empathy, and self-education. If I could add a fourth it would definitely be family, because without my parents and my siblings I would not have had the safety and support to build on the first three qualities to the extent that I have. The same goes for my spirituality and religion, although I have not made it a public focus of myself to others, it is something that my family and I have always privately participated in, and it has shaped and formed the way in my journey in the way I see the world, in the way that I find healing, and in the way that I have come to believe my purpose is.
Empathy helps me see beyond myself, and it acts as a compass for me that guides me in the right directions. Living with a rare disease, watching my siblings go through the same, and witnessing the pain my parents and oldest sister have endured because of it on top of their own life struggles, has made me personally feel the depth of other people’s pain since childhood, long before I had the capacity to talk about it. Empathy has helped me connect, help, and advocate with sincerity.
Adaptability helps me find hope, resilience, and to seek solutions. By watching my family adapt to so many changing circumstances, and practicing adaptability with myself and my progressive disability, it has helped me survive and grow. My academic path changed multiple times, and I thought it was simply because I was indecisive, but a different perspective is that I saw value in learning different tools for helping others. My whole life my health has had constant shifts, worsening over time, new symptoms developing, new physical abilities lost, so flexibility has never been optional for me, it’s a skill I had to learn to live.
Self-education has helped me find strength in knowledge, because the more I understand my world and the things around me, the better I can advocate for myself and others. Whether it was learning to navigate legal paperwork, understanding medical systems, researching nutrition and psychology, or staying up to date with the latest research trials and studies, I don’t regret anything I learn.
For anyone starting their journey, I would tell them to listen more than they speak, to take the time to see before they assume, and to not just sympathize, but to imagine themselves in someone else’s shoes until sincere understanding is achieved. I would tell them to not let their experiences limit them, to instead take those experiences as bricks they can use to create a path, regardless of the color or condition of the brick. And I would tell them to feel the freedom in letting go of the idea that a straight path is needed. I would encourage them to become curious about learning, about knowledge, and about understanding. Knowledge is power; we just have to practice using it in a way that is beneficial rather than overwhelming. And most importantly, I would tell them to be patient with themselves because growth and advocacy looks different for everyone. Even just surviving through some chapters is progress. Even just being one more person quietly showing up in this world with a good heart is already doing more than they think. And although family has always been important to me and I make it a point to let their value in my life be known, I know that family does not have to be the only source of safety and support. Look for it in friends, in neighbors, in strangers, and in your community. The disabled community is one of the most welcoming communities that strives in building each other up.

Before we go, any advice you can share with people who are feeling overwhelmed?

When I feel overwhelmed I first try to make my space as small as possible as a way to close off from the world. If it is just me and myself, with or without the task at hand, with no perception of time, space, and life outside of my bubble, I feel I am able to regulate the way my body feels and deafen the racing thoughts enough to work through it. It’s like if you were to envision a bubble around you, and nothing outside of that bubble exists for as long as you need it to not exist. Once my bubble is created, what I choose to do after depends what level of overwhelm I’m feeling.
Most often I choose a grounding method to ground myself inside this bubble and to the immediate present time in the bubble. I personally like the 5-4-3-2-1 grounding method where you look around you for 5 things you can see, 4 things you can touch, 3 things you can hear, 2 things you can smell, and 1 thing you can taste. An alternative favorite of mine is box breathing, where you envision outlining a square, and as you’re outlining each side of the square you are breathing in and out for 4 seconds on each side. For example on the first line, you breathe in for 4 second, then on the second line you breathe out for 4 seconds, etc. Another one I practice is EMDR, which I still feel fairly new to it even though I did learn about it while pursuing my degree in psychology, and I was further taught how to use it by my therapist around 1-2 years ago. But I feel it is completely different to understand it in writing, understand it in teaching, and to understand it in practice with each different situation. But it is a skill that definitely has value in learning and it has been helpful to me in different situations.
After being grounded and my body sensations associated with being overwhelmed are gone, I get to choose to either remain in that state and further relax or finish the task that caused the overwhelm, or I write about my thoughts and feelings. I try to look at things rationally and problem solve, but if there is no rational solution or if there is nothing I can do about a situation, then I try hard to focus on healing and letting go of what is out of my hands. I write about it as often as I need to, and I remind myself of what I can control in my life, and of the good things I have to be appreciative of. I keep an album in my phone with reminders of those things, such as photos and screenshots of messages, and I oftentimes look through it as a visual reminder of all of the things I am grateful for. I believe that also grounds me to the present, reminding myself at least daily of the things I am grateful and appreciative of, as a way to mute or tone down the things I am overwhelmed by. I also remind myself of the obstacles I have already overcome, and then ways I have found alternative or adaptive solutions to roadblocks in my life, and I use that reminder to build the confidence in myself to face what overwhelms me and find peace in it in the fact that I can take it step by step.

Alternatively, for as long as I can remember, at the most heightened level of overwhelmingness, I have resorted to praying. I remember being a child and praying in my head during the most overwhelming times of my life, because that is what I grew up seeing my family do. I have memories of even when I was taught my first two prayers as a child, and when I was crying in pain I kept repeating the same prayer in my head over and over again until the pain passed. I have many memories of my parents, siblings, and I getting on our knees at night at home to pray together as my mom lit candles. I have memories of my family in Mexico hosting prayer groups with extended family and sometimes neighbors. I have memories of my mom taking my siblings and I to other people’s houses to pray with them during their times of need or uncertainty. I witnessed my family having to heavily lean on God and on the church and on the faith of others in order to have enough strength to face the most overwhelming and tragic obstacles in their lives. I witnessed my parents visiting churches representing different saints and in prayer offering sacrifices on their part in exchange for the miracle of extending their children’s lives. And because of that, I also found comfort in prayer. Comfort in the fact that when my hands are tied and the thoughts are racing too fast, praying makes me feel like I am doing something, and like in that moment it is the best I can do and that is good enough until my mind is cleared and I can take the next step. Sometimes I even achieve clarity after prayer and a good cry that releases all of the built up emotions. Sometimes when I’m feeling lost and overwhelmed I go to bed talking to God about it and asking for a sign or an answer, and I wake up the next day with my mind completely clear and pointing in one direction.
I don’t often speak of this side of my life, especially when not asked about it, because I know of and respect the differences that everyone can have in their beliefs. To me, spirituality and religion is something that is the most meaningful in private anyways, so whichever your spiritual beliefs are, I believe that is a good place to retreat to during times when you feel overwhelmed.

Contact Info:

• Instagram: https://www.instagram.com/thatchickwithmd
• Other: Blog: https://thatchickwithmd.wordpress.com
  E-mail: [email protected]

Image Credits

(The three images of Javier, Eduardo, and Patty are of my 3 older siblings with SELENON-related myopathy (SEPN1-RM) that passed away at ages 17, 17, and 36 years old)