Role Models Light the Way

It is important to find others who understand what you're going through

Photo by Mark mc neill on Unsplash

My first panic attack occurred on Valentine’s Day 2012. Although it came on suddenly, it was years in the making.

I remember it was Valentine’s Day because it involved a bouquet of roses that had been delivered to my coworker’s desk two hours prior. It wasn’t that I was upset about someone receiving flowers on the most romantic day of the year. Rather, it was a visceral reminder that my life was not going according to plan. 

For four years, the progressive weakness brought on by my muscle disease had taken over my life and dictated every detail. The disease didn’t care about my dreams. It didn’t care what type of life I wanted to lead, where I wanted to live, and with whom. It was now in charge, and there was nothing I could do.

My disease forced me to plan in minute detail every aspect of my life, down to the quality of each individual step. I had to think about the weight of my lunch in my backpack. I had to dwell on the barometric pressure outside and how it would affect my joints. I had to find a winter coat that was insulated but not too heavy. If I overlooked any detail, it could mean the difference between getting through the day safely or falling flat on my face.

Layered onto my daily worries were more existential concerns that kept me awake at night. How much strength was I going to lose? How much longer would I be able to walk? Could I remain in Boston? Would I someday need around-the-clock care? When would I have to stop working?

Meanwhile, all around me, my friends and coworkers who were entering their mid-to-late twenties were hitting exciting life milestones - falling in love, buying houses, getting promotions, going on exciting vacations.

It wasn’t fair.

Meltdown

Which brings me to Valentine’s Day. 

Of all my existential worries, love was the one that made me the most anxious¹. I was already a bit unlucky on the dating front, especially since I graduated from college in 2008. Under normal circumstances, I was introverted and shy. But now, with my disease progressing, I felt the window of opportunity closing before any dating conversation would have to take into account the impact of my disease. I was reaching the point where I couldn’t hide the fact that I walked slow, that I couldn’t climb stairs, that, without any warning, I could fall. I knew not every woman would be superficial about these types of concerns, but when you are suffocating under the weight of the world, rationality is the first casualty. 

That morning, I was a tinder box of anxiety and envy. I knew I wasn’t in a good headspace, and tried to compensate by pouring myself into my work. Unfortunately, the office that I worked in had an open floor plan (it was a small tech company in downtown Boston). Out of the corner of my eye I saw a bouquet of roses delivered to my coworker’s desk. Even though she was probably more embarrassed than anything by the gesture (the relationship was short-lived), all I saw was a symbol of love. 

I wasn’t angry. This isn’t a story about how I snapped or wished ill will on anyone. Instead, what I felt was a tightening in my throat. My breathing became shallow. I broke out into a cold sweat as my heart began to pound so hard that it disrupted my thought process. I had a sense I was starting to have a panic attack but I couldn’t stop it from getting worse. 

Air. I need air.

Without any regard for how it looked, I jumped up from my desk, grabbed my jacket, and made a beeline for the elevator down the hall. I didn’t even close my laptop or take my backpack. As I walked by, I saw my boss look up at me, puzzled. She didn’t know what was going on. I think she might have called out to me but I was so preoccupied with leaving that I blocked out all noise.

Several minutes later, I was gasping for air on a granite bench two blocks from my office. Getting there was a chore - I had to take slow, methodical steps while fighting dizziness. No easy feat. My heart continued to pound away unabated. I was all alone in the plaza, the only person foolish enough to sit down on cold granite in sub-freezing weather, but the solitude provided just enough space for me to clear my head.

Eventually, my breathing and heart rate normalized. Even though I could explain what had happened, it was still an unsettling feeling. 

For too long I had stuck my head in the sand and refused to confront the unpleasant realities of my disease. I was too afraid to contemplate my future. I was too afraid to seek help.

I knew I needed to find others who could steer me in the right direction and provide guidance on how to move forward with life despite this disease. Because these circumstances weren’t going away.

What I needed were role models.

Stories and role models go hand in hand

In my previous newsletter, I discussed the importance of sharing your story. In addition to the positive impact it can have on your life, telling your story can change the lives of countless others. This is because everyone is going through something, and there is someone out there who is going through exactly what you went through (or what you may still be going through). They are seeking examples of others who have dealt with similar challenges. If they come across your story, you might just become their role model.

Today, we are going to look at this dynamic from the perspective of someone seeking role models, especially when it comes to dealing with adversity. I will use my journey after the panic attack to help illuminate this point.

A role model is defined by Merriam-Webster as  “a person whose behavior in a particular role is imitated by others.” The key word is imitated. We look to imitate others because we all encounter times when we don’t know how to move forward and need guidance.

Maybe it’s coming to terms with a disease diagnosis, or going back to school while raising a family, or switching careers. Maybe it’s finding hope after a loss or advocating against injustice. In each situation, there is someone who has been through the struggles you are going through, even if the circumstances might look slightly different.

After my Valentine’s Day meltdown, I needed to find someone to imitate, someone whose story I could discover, internalize, and stash away for a rainy day. 

We can’t succeed alone

At first, this seems like a very simple concept. We need help. We find role models. Easy enough.

And yet, how many times do we know exactly what we need to do, but don’t do it? 

Finding role models is simple, but not easy. When we admit that we need help, we are forced to confront the brutal realization that something isn’t working in our lives. We may have to admit that we are not in control and don’t have all the answers. With this admission often comes a feeling of shame and a sense that we have failed in some way.

This is not a fun realization, but if there is any comfort, it’s in the fact that we all need help. Some have no problem seeking out help, others struggle mightily to do so. But when we delay, life has a way of forcing our hand.

I speak from experience.

My initial folly, and what led to my first panic attack, was in trying to take on my disease all by myself. I did everything you’re not supposed to do. I didn’t reach out for help. I didn’t let people close to me know the full extent of my struggle. I didn’t look for role models to guide me along the right path. 

Instead, I stuck my head in the sand, refused to accept reality, and ended up in a dark place. I didn’t want to find role models because I didn’t want to know how my disease might turn out. I held out hope that by ignoring the progression of my symptoms, I could somehow prevent further weakness from happening. This was a recipe for disaster.

One of the fundamental takeaways of Stephen Covey’s well-known book, The Seven Habits of Highly Effective People, is the concept of interdependence. Loosely defined, it means that we can only succeed when we work together. When we combine our efforts, we accomplish far more than we do alone.

According to Covey: 

“As we continue to grow and mature, we become increasingly aware that all of nature is interdependent, that there is an ecological system that governs nature, including society. We further discover that the higher reaches of our nature have to do with our relationships with others - that human life is also interdependent….Interdependence is the paradigm of we - we can do it; we can cooperate; we can combine our talents and abilities and create something greater together².

To succeed in life, we need to rely on others. Success can mean business success, but it can also be something as fundamental as dealing with our everyday challenges. 

That’s where role models come into play. When you share your story and I discover it, you become my role model and help me handle my circumstances. Then, when I’m in a good place, I can tell my story and help someone else. When enough stories are out there in the world, we benefit interdependently from this collective exchange.

Photo by Antonio Janeski on Unsplash

What help do you need?

When I went home the night after the panic attack, I thought long and hard about what type of role model I needed. 

Above all, I was worried about what the future held. I knew I was headed for a wheelchair but didn’t yet know what that meant. Would I be able to live a full life? I wanted a career and a family and the ability to travel wherever I wanted. I wanted to be spontaneous and feel that the world was at my fingertips, even if it would all have to be done in a less conventional way. 

Someone out there in the world, someone in human history, had to have figured this out. I needed to find that person, and if possible, reach out to them³.

Sometimes we know exactly why we need a role model. Other times, we know we need one but the reason why isn’t as clear.

It is worth reflecting deeply on this step before getting started. In what area(s) of your life do you need help?

Is it a disease diagnosis? Maybe you need to find someone who has been in your shoes, who can direct you on what to do next after receiving the life-changing news. 

Is it depression? Maybe there is a celebrity or public figure who has been candid about their struggle, and has learned how to perform at a high level while coming to terms with the darkness within. 

Is your business venture encountering headwinds? Maybe you need to find an example of a successful business that started off slow, or a founder who understands the ups and downs of being an entrepreneur.

Whatever your situation, be honest with your needs. If you’re struggling, don’t rationalize that you can continue alone, forging your own path, without seeking external input and guidance. If someone else has fought the battles and made the mistakes, let them teach you.

Where to find role models

Identifying how you need help is the first step. Next, you need to figure out where to find the help. This process is less straightforward than problem identification. It is not like calling for Superman and having him show up at your window sill five minutes later ready to save the day. It can take time to find the right person to imitate.

For this process to work, for the role model to make a tangible difference in your life, they need to speak to your innermost longings and insecurities. It may require research to find the right person.

If you already know someone who can serve as your role model, that is a wonderful advantage. It could be an older sibling, a parent or a trusted mentor who has gone through the challenges you’ve encountered. For most people, however, we don’t know anyone in our own lives who has gone through what we’re going through. (This is especially the case with a rare disease diagnosis.) 

Role models can be living or deceased. You can get just as much out of someone’s story from decades or centuries ago as you can from someone living today, especially if it is general guidance you are looking for. Many historical figures have dealt with disease, depression, trauma, and loss.

But if you resonate better with living role models, there are plenty of ways to find them. The internet can help with this. Nowadays, there are forums and groups for every conceivable topic. Before reaching out to someone, take some time to get a sense of the different stories shared. Who posts a lot? Are they positive or negative? Who seems to be a measured, trusted voice during heated discussions? If someone stands out, feel free to private message them. Or, if you are comfortable doing so, post about your situation and ask for guidance and support. Someone will respond, although it will take trial and error to figure out if the person responding is worth imitating. 

The internet can also lead you to blogs and websites of people writing about your area of need. This might actually be a more effective approach than forums - you can read about their journey, follow their progress over time, and in many cases, see pictures or watch videos that can give you additional context. If they are someone you want to contact, almost every site has a contact page. People love to hear from readers! (Hint, hint.)

Depending on what help you need, there might also be a foundation or trade group that can point you in the right direction and provide you with stories of others going through a similar challenge. For example, most diseases have patient foundations. If you reach out and say you are looking for an example of someone who has started a family while living with a given disease, they might know someone for you to reach out to. 

It was the Jain Foundation website that ultimately led me to my role models. Fortunately, I knew where I needed to look beforehand - the problem was I was too stubborn to do so until I was left with no other choice. 

The connection

The Jain Foundation redesigned their website in 2011 to feature patient stories on their front page in a revolving montage. (It has since changed.) I had come across this area of the site before, but at the time, it was too painful to click on a story to read more. This time, however, I knew I needed to do it.

The stories were a cross-section of people, men and women of different nationalities, ethnicities and socioeconomic circumstances. At first, it was difficult to read their stories, from their initial loss of strength to their challenges finding love and maintaining a career. Everyone worried about the future and struggled to accept the circumstances of their new lives. I could relate to their sadness and fear. 

The more stories I read, however, the more I realized that spouses and children and successful careers weren’t the exception; they were the norm. As in, these people had lives beyond their neuromuscular disease. 

Although I still grieved losing my mobility, I began to see a path forward. 

I reached out to several people whose stories I read, sending them emails when possible or connecting on Facebook. It was a great relief when they responded, as I now had someone I could talk to who understood my circumstances. I asked them questions about going back to school, what it was like to find a spouse, how they lived independently. Each provided guidance and actionable steps to take. They helped to show me what was possible and offered to be a resource along the way. 

Compiling your learnings

By making these connections, I started to believe that maybe there was a way through the darkness. Encouraged, I began seeking out additional role models, people who didn’t have my disease but who still had something to teach me. Their names are top of mind even today⁴: Carly Hughes. Sam Berns. Pete Frates. Pat Quinn. Sarah Coglianese. Mawi Asgedom. Viktor Frankl.  

It is important to keep your role models top of mind in an accessible location. Make a list of their names, links to their stories if available, and their qualities you wish to imitate. (Or if you know them, make sure you have their phone number in your phone.) It is key that this information is as easy to reference as possible, because on the tough days, they are going to help pull you through.

There are a couple ways you can organize this information:

• You can write down their names and attributes in a notebook or on your computer. This is a common approach throughout history. In Book 1 of Meditations, Roman Emperor Marcus Aurelius lists out his role models and what he has learned from each of them, to remind himself of the virtues he wanted to embody. 

• You can save articles of role models who inspire you. Many role models are found from feature articles in newspapers and magazines. If you come across a story that resonates with you, save it on your computer or print it out and put it in a folder. When you need inspiration, simply open the article, read it again, and remember what is possible.

Whatever you choose to do (and this not an authoritative list by any means), all that matters is having a handy method to access the wisdom of your role models as quickly as possible.

Role Models light the way

If you are struggling with life (and at this point, who isn’t?), it is okay to admit that you don’t have all the answers. Someone has been through what you’ve been through. They are out there, waiting to be discovered. 

My panic attack was the result of refusing to acknowledge the challenges in my life up until that point. If I had sought out role models sooner⁵, I might have been able to avoid the panic attack altogether. At a minimum, I could have avoided needless pain and suffering. 

I am what I am today because of my role models. They have been lights in the darkness, providing guidance and counsel during difficult moments. 

And there would be more difficult moments.

Two-and-a-half years after the Valentine’s Day panic attack, I was on the verge of another episode, this time during the first semester of business school at Boston College. I was having fun but found myself overwhelmed by the pace of the program - the full days of classes, job hunting, networking and socializing. I wanted to maximize my time in the program (considering what I was paying) and justify to myself that I had made the right decision to quit my job and go full-time. 

One night, after getting home from a long day of classes and meetings, I slumped down into my desk chair. I was exhausted. That afternoon, I nearly fell in the hallway between classes, an embarrassing moment still seared into my mind. I thought of the close call and began to feel a familiar tightening of my throat. Another panic attack. This time, I knew what to expect and why it was happening: I was doubting my future again. 

But unlike last time, I was ready.

A screenshot of the Pete Frates Family Foundation website.

A few months prior, I had read about a man named Pete Frates, who, along with Pat Quinn, helped make the ALS Ice Bucket Challenge a worldwide sensation that summer. I had saved an article about his story on my computer, how he went from star of the Boston College baseball team to ALS patient within a few years. Motivated to act, Frates and Quinn started the Ice Bucket Challenge to raise awareness for ALS and research funds to fight the disease.

I pulled up the article and read it beginning to end. Pete’s story resonated with me on many levels: I was currently attending BC; he was only a couple years older than me; two of my classmates knew him personally; and although his condition was more serious than my own, his journey from full mobility to using a wheelchair hit close to home. 

But it was Pete’s tenacity and optimism that gave me hope that night. Here was someone who, despite a devastating diagnosis, was doing great things and making a difference in the world. I also wanted to make a difference - it was why I went back to school, so I could someday work in the healthcare sector. 

His example helped calm me down before the panic attack could take hold. I never got the chance to meet Pete but his story made me feel less alone.

Because of his story, I knew tomorrow would be a better day.

1. This still makes me anxious but I am in a much better place than I was thirteen years ago.

2. The Seven Habits of Highly Effective People, P. 49.

3. This raises an important question - if you find a role model (and they are alive), should you reach out?

The answer is subjective. Personally, I don’t see a problem reaching out to someone that is a role model of yours, no matter how famous they might be. If they are a “regular” person, they will probably respond if you reach out on social media. If they are someone famous, chances are they won’t respond for whatever reason. It’s nothing to take personally, but the odds are stacked against you. But in most instances, you have nothing to lose. (Unless the person responds and is a total jerk, in which case, time to find a new role model!)

4. Except for Mawi, everyone else on this list has unfortunately passed away. I had the honor of working with Carly, meeting Pat at a conference and trading emails with Sarah. I also had the chance to chat with Mawi on the phone after emailing him out of the blue, which meant so much to me.

5. The panic attack also led me to see a therapist. I haven’t mentioned therapy up until this point, not because it’s not important (it is another useful way to seek help), rather, it’s a topic that deserves its own article. I will discuss it in a future piece.