Lesson Learned #2: The Importance of Role Models

Author’s Note: This is my second post in The Adversity Playbook, a series that outlines my lessons learned in dealing with adversity.

In my first lesson, I mentioned the importance of opening yourself up to others when you are feeling down or struggling with a heavy burden. I know I make it sound like it’s an easy decision, but I know firsthand how difficult it can be! I fully admit that it took me many years to open up. Looking back, I regret how long I internalized my challenges, yet I can appreciate the difficulty inherent in making the choice.

It is only once you have opened yourself up to someone that you can fully appreciate how important other people can be. Adversity is not meant to be fought in isolation. Friends and family members are a tremendous source of comfort, and confiding in them can often lift the burden right off your shoulders. What you will find is that people are thankful that you have opened up to them, and, if they are truly someone you can trust, they are more than willing to help.

But there is another group of people who can be just as helpful to you as a family member or a friend. They may not know you, but you certainly know them. They are adversity “role models” – everyday heroes whose stories you come across and that stay with you long after. Often these people leave indelible imprints on your soul, and they become your personal guides as you navigate the rough terrain of life.

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In the internet age, it is so easy to find stories of other people who have lived with, or are living with, what you are going through. I can Google “muscular dystrophy” and find numerous blogs and articles about people living with muscle weakness, who understand on an intimate level what I’ve felt over the years. They know what it’s like to have dreams crushed, to experience loneliness and isolation, and to adapt to a new way of life. Yet, many of these people have learned how to forge new dreams, and live more meaningful lives than they would have otherwise. In your own situation – whether you are living with a disease, or have experienced depression, failure, or some other form of adversity – the internet can lead you to stories of others who have walked a mile in your shoes.

Forums and websites are great for connecting with similar individuals, and are useful in their own right. But what I have found especially valuable is finding specific role models – someone whose story resonates on a deep level. It can be a person specific to your situation, or it can be someone walking in a completely different pair of shoes, overcoming their own form of adversity.

You will often find that there are two different types of stories you come across. First, you have the stories that are super upbeat and talk about how inspirational the person is for overcoming their challenge that otherwise should have kept them from being a contributing member of society. You can spot these stories a mile away – I’m sure you know what I’m talking about. They come off as condescending and patronizing, and often make you feel like the person has been exploited. This happens a lot in the disability space. Oftentimes the writer or editor – usually someone unfamiliar with the person’s story going in – does not intentionally try and tell the story in that fashion. But it happens a lot, and quite honestly, stories told in this fashion aren’t all that useful to someone seeking a role model.

The second type of story – authentic storytelling – is the kind that will be most beneficial to you. I’m talking about stories that tell the good and the bad, and hold nothing back. These are usually either long-form feature pieces (in written or video form) that chronicle the subject’s journey, or are written/recorded from a first-person perspective. Personally, I want to know how the person has struggled, because when they ultimately triumph, or come to a level of peace with their situation, it feels authentic, rather than artificial. You fully contextualize their journey, and understand the steps that got them to that point.

Authenticity is crucial. You don’t want to read something and feel manipulated, or feel like the story is being used in a way to achieve some commercial gain or serve an ulterior motive. Authenticity is the driving force of this website – if I am going to put my story out there to the world, I want people to understand how it really is. I may overcome challenges, but there are days where life gets the best of me. The day I am not portraying my disease in an honest light is the day I should stop writing on here altogether.

(Quick tangent: I was part of a campaign once where my story was going to be used as part of a campaign to get people to donate money, and I immediately recoiled when I saw how my story was written by the author. In short, I was being portrayed as a helpless person suffering from a terrible disease, in need of the donor’s pity. Thankfully, I saw the first draft and refused to participate, and it never went to print. Another lesson learned!)

Our role models allow us to see that we are not alone in anything we face. It is necessary for us to find others who have made it through the dark times, and it is important to learn how they did it. Adversity happens to everyone, although we handle it in different ways. In the disease realm, where I live and operate, I often seek inspiration from people with all sorts of diseases outside of muscular dystrophy, simply because there is so much to learn from their circumstances that I can then use in my own life.

When you come across a story that resonates with you, I encourage you to read it or watch it more than once, in order to let the lessons sink in and internalize certain situations the person experienced. Save the story onto your computer or phone for when you need inspiration. Take notes if you have to. I firmly believe every story has a unique learning. I’ve internalized countless tips, quotes and mantras based on what others have been through. It is knowledge you can’t learn in a classroom or a how-to book.

Personally, I have several role models who have taught me a great deal about life and allowed me to see a future beyond my disease. Some are strangers, others are close friends and family.

Now, for the homework. (You didn’t think I would assign homework, did you?) There are many inspiring stories I will share in the coming months, but for right now, I encourage you to check out a documentary called Life According to Sam, which originally aired on HBO and can be viewed on iTunes and Netflix.

Sam Berns was a 17 year old young man with progeria (a disease where the body rapidly ages) who lived right outside of Boston, not far from where I lived for twelve years. Although he only lived to be 17, he packed more wisdom into his life than most adults.

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Sam hard at work

I distinctly remember sitting at home one snowy February day in 2014, miserable. Looking for inspiration, I decided to watch his documentary. I was vaguely familiar with his story from an obituary that ran a few weeks prior (he passed away in January 2014).

His story was exactly what I needed to hear at that moment. Sam knew all along that his odds for a long life were slim, but he remained adamant about packing every activity into his life that was humanly possible, including drumming in his high school marching band. The drum and harness weighed almost as much as he did! But he found a way. He always found a way.

The best part of the documentary is that Sam, in talking to the camera, faced his mortality head on. He explicitly stated that he didn’t want the viewer to feel pity for him. The viewer wasn’t watching a pity party, they were merely meeting an average teenager, in an extraordinary situation, trying to live an average life. Nothing more, nothing less. Of course, whether he wanted to admit it or not, he was brave and wise beyond his years.

Sam’s story is one of many that have inspired me during the ups and downs of my life as I’ve gradually come to grips with my disease. I know he can help you as well, and I highly recommend watching his documentary. If you don’t have time to watch it, at least take a look at his TED talk on how to live a happy life. It is around 13 minutes, but it is well worth the diversion:

My faith has sustained me during the dark times, but there is no question that everyday people have also played an integral role in keeping me afloat. They always seem to enter my life at just the right time.

Every day brings a new challenge, but also, new role models. I am eternally grateful to these heroes of mine, some of whom I will never have the chance to meet, yet feel like I’ve known my whole life.

Lesson Learned #1: Don’t Go At It Alone

There are certain moments that still stand out, painful as they are to recollect.

In the early days of my disease, when my symptoms first started to manifest, I didn’t know how to respond to what was happening to my body. Initially, I shrugged it off. I figured my leg cramps and sore back were the result of being out of shape. When the symptoms persisted, and I noticed my muscles were becoming weaker, I started to worry. I pulled out my medical records from four years prior and read over my diagnosis – dysferlinopathy – searching for clues on what was happening to me. I read the neurologist’s notes on the expected progression of the disease, and suddenly the lightbulb turned on: my strength wasn’t coming back.

No one who experiences a life-altering condition such as progressive muscle weakness is expected to handle the emotional burden perfectly. I don’t know of anyone, in all the hundreds of stories I’ve read, who gracefully accepted their diagnosis from day one. It is a grieving process to realize that your life is going to be turned upside down by the limitations of your body. Everyone wants to live a normal, healthy, active life. To have that taken away is not something that is easily accepted. Some people never do.

My own path to acceptance was difficult. Looking back, I’m disappointed in how long it took to come to grips with the magnitude of my diagnosis, although on the positive side this journey enabled me to become the person I am today. But it was still painful, full of many situations I’d do over again if given the chance.

My biggest regret, above all, is how I handled my relationships with other people during this time. Whereas now, in my weakened state, I understand just how important it is to have a support system of friends and family in place, back then I had no clue. 2008-2012 was my denial period, “The Dark Ages” of my life.

I remember the feelings, the vain moments where I tried to hide my weakness from the rest of the world. Whether it was hauling my laundry up the stairs long after I should have asked a roommate to help, or wearing jeans in hot weather to avoid people seeing my thin calves, I didn’t want others to know what was going on.

But holding in toxic emotions – fear, depression, denial, you name it – was destroying me on the inside. I stopped sleeping well. I developed heartburn. I was in a constant state of worry and stress.

My body continued to weaken during this time, culminating in my first fall in 2010. I was walking with my roommate when it happened. As soon as I pushed myself back onto my feet, I realized the gravity of my condition and what it was doing to my body. When he asked what happened, I realized I couldn’t hide it anymore.

My parents always knew my diagnosis, but like me, they thought it wouldn’t manifest until much later in life. We had shrugged it off at the time as a “missing protein”, and nothing more. When the weakness began to accelerate, however, I didn’t let on to them just how severe it was getting. It wasn’t until Thanksgiving one year where I tearfully confessed to my mother and sister on separate occasions how much it was weighing me down. This disease was much more than a missing protein.

I resisted telling my roommates for as long as possible, even my roommate who was with me the day I fell. I could tell they were perplexed when I didn’t run to catch a bus, or when I started using the railing to go up the flight of stairs to our apartment. Eventually, begrudgingly, I told them over email (we had a roommate email thread), although even then I don’t think they quite understood what it meant. At that point, I barely understood myself; my long-term prognosis was still unclear.

If I resisted telling my friends, I certainly didn’t open up about it to my coworkers. I told my boss, but that was it. Every time I was on the verge of telling others, I stopped myself. The situation didn’t feel right. I was uncomfortable with what I should or should not disclose about my condition in a professional setting.

Even after disclosing my condition to those closest to me, it provided little emotional relief. I was still ashamed, still embarrassed to ask for help. Although my friends and family now knew what I had, they did not understand what it meant. They did not know how much it hurt me inside to live through this transition, mainly because I refused to tell them.

I thought I could handle it all myself, that it was my burden to carry, my fight alone. I did not want others to think of me any less, or see me as disabled. At the time, being disabled carried a major stigma.

A consequence of this emotional struggle was that I began to shut myself off from others. I stopped going out with my roommates, for fear of falling. I stopped enjoying myself and being spontaneous, for fear that I’d trip over a sidewalk or be put in a situation where I’d have to do some sort of physical activity where I would show that I didn’t have any strength.

In October 2011 I knew I had to move out of my apartment. I couldn’t go up the stoop and flight of stairs to my room any longer without significant difficulty. In retrospect, had I been more open about my condition and let my friends in on the emotional struggle I was fighting, it would not have come as much of a shock to them that I was leaving. They certainly would have prevented me from re-signing the lease when it came up for renewal in September. It is safe to say I mismanaged the situation, mismanaged our friendship, and allowed for the opinions (or perceived opinions) of others to create this great miscommunication. Although I was able to break the lease once I found a replacement tenant, it was a rocky time. Many arguments ensued, and I was miserable at how it all transpired. By not being open and honest about what I was going through, I created a difficult situation for everyone involved, further exacerbating the emotions I felt inside.

The apartment fiasco affected my work performance. My boss saw that I was struggling and pulled me aside one day to ask what was wrong. Eventually, she escalated it to her boss, who told me in no uncertain terms that I needed to get help. It was tough to hear, but I knew he was right. I started to see a behavioral health therapist, who, although I only went a few times, showed me the value of unburdening myself by talking to someone. I realized that by keeping all my emotions in, not asking for help, and viewing myself as a lesser person due to my disability, I was doing myself a great injustice.

It wasn’t until I started writing a few months later that I began to open up. I found writing to be the easiest outlet to share my emotions, as it was still a difficult subject to discuss in person. Once everyone finally knew – friends, family, coworkers – a weight was lifted. Through my writing, I was able to not only disclose my disease, but convey to everyone how it felt. From there, life snowballed in a positive direction.

I recount this rather unflattering time in my life for a simple reason: I don’t want anyone to wait as long as I did to open up to those around you. Use me as an example of what not to do, and how not to deal with the initial stages of adversity. I don’t fault myself for waiting so long, as again, there is no flat, linear path to acceptance. You can’t shortchange the grieving process. But there were definitely times where I wanted to open up, and just about opened my mouth to confess what was going on, but held back. If I had asked for help a year into my experience rather than four years in, I could have saved myself a lot of grief and aggravation. Although none of it can be undone, I learned a lot of life lessons during this time which benefit me today.

If you are struggling with something, anything, whether physical or emotional, and if internalizing it is affecting you negatively, my biggest piece of advice is to tell others. Do it when you are ready of course, but resolve to talk to someone. Rip off the proverbial band-aid. Even if you start with your closest friend or family member, it will be worth it. Do not be afraid to show vulnerability. Sharing your vulnerability with someone not only helps the other person to understand on a deep level what you are feeling, it also builds up a level of trust with that person that pays lifetime dividends. In fact, there are times where I’ve shared my situation and others have felt comfortable enough to share their own difficulties with me, stories they have not shared with anyone else. If people see you are letting your guard down, you give them permission to do the same.

What I should have realized, but didn’t until much later, is that the people who truly matter in your life aren’t going to judge you, and more importantly, they want to know, because they want to help. Everyone I told was willing to pitch in once they understood the magnitude of what I was going through. My roommates in my final days at the apartment started helping me with my laundry and driving me places instead of walking. They started proactively asking if they could help, which never would have happened if I continued to internalize my burden.

And if someone reacts negatively to the news, what does that say about the other person?

You don’t have to be dealing with a life-altering illness to have a valid reason to share your vulnerabilities with someone you trust. Life is difficult enough. To fight your struggles alone is not only unproductive, it goes against what makes us human. Humans need other humans in order to live a happy, fulfilled life. You don’t have to tell the world that you are depressed or are second-guessing your career; telling a friend is powerful enough. And if you don’t have friends or someone you can trust, there are communities on the internet or nonprofit organizations for every conceivable disease and worry. You can share your burden anonymously, without disclosing personal information. Even seeing a therapist can be tremendously freeing, especially considering that the stigma of going is unfounded and overrated. Trust me, everyone could benefit from seeing a therapist!

Society celebrates the independent, self-reliant person. But true success is shared. Anyone who has accomplished anything worthwhile in this world has had others who helped them get there, whether or not they realize it or acknowledge it. Every person you reach out to for help is a contributor to your ultimate success.

And like many things in life, it is a two-way street. You may end up inspiring others to reach out to you in the future to talk, for everyone is dealing with something, visible or invisible. Unfortunately, too many suffer in silence.

 

 

Walking Together

 

The greatest outcome from sharing my story with the world has been the opportunity to help others. Since I finally opened up about my condition four years ago, my life has taken a turn for the better. Through writing and speaking about my patient story, I’ve had many wonderful people come into my life, from high school classmates I’ve reconnected with to complete strangers who were moved to contact me in some way. I am not terribly comfortable as the center of attention, but I do it because I believe that I am part of something much larger than myself.

To be honest, I don’t consider my story to be more inspirational than anyone else’s. I’ve said that many times before. Have I dealt with a lot? Absolutely, and I won’t sell myself short there. But at the same time, I am not the only one who has persevered in this world. I don’t have the market for inspiration covered, as I know of countless others who have dealt with even greater burdens. They are the people I turn to when I need to be picked up after a tough day.

Rather, what sharing my journey has shown me is that there is a great unmet need in society for impactful stories. Everyone these days is struggling with something, and far too many suffer silently. They walk the lonely road that I stumbled down years ago. People need to be reminded that they are strong enough to get through whatever it is that gets them down, and the best way to accomplish this is to hear the stories of others. People need to hear the good and the bad, the successes and failures. Meaningful, authentic stories connect with people on an emotional level like no other story can.

The need is great. I don’t say that as an exaggeration or as an indictment on society; it’s my observation from firsthand experience. Everyone is struggling with something. This is a favorite phrase of mine. My disease has (thankfully) made me more empathetic, to the point where I can identify easily when someone is having a tough time. It is sort of like my sixth sense.

Lately I have been receiving around 1-2 emails and messages per month from complete strangers. They usually ask me for advice or thank me for sharing my story. I am flattered, sure, but more than anything I want to help each person. Sometimes I have answers, sometimes I don’t. But if I don’t, I try to at least steer them in the right direction. I don’t want anyone to encounter me and not have their situation improve in some way.

I’ve thought a lot recently about how I can help people on a greater scale. For everyone that reaches out to me, I wonder how many others read or hear my story but are hesitant to reach out. I wonder even more how many people out there would benefit from hearing anyone’s story, let alone my own.

I realize that I can do a better job of communicating on here what has helped me on my journey these last few years. As a result, I am going to write about, in a series of posts, various pieces of advice. Each post will cover a specific topic that I will briefly outline below. You can find these posts under my new column heading, “The Adversity Playbook”. My hope is that, for anyone who stumbles across my website, they can use my experience as a starting point on their journey. Bumpy roads don’t have to be lonely roads.

I am not an oracle who has all the answers. I have made my mistakes along the way, and there are some days I go against this very advice I am about to tell because I am tired, stubborn, and/or frustrated. In short, I’m human.

I make this list as a jumping off point. It is only meant to scratch the surface of what I hope to write about in future posts.

Without further ado:

  1. Don’t go at it alone!

I can’t emphasize this enough – life is not meant to be lived in isolation, especially when you are going through a tough time. It is natural to feel isolated when the world around you cannot relate to your situation, especially if it is a disease. But the sooner you recognize that you can’t go at it alone, and more importantly, that you are not supposed to go at it alone, it changes everything. I am living proof of that. I wouldn’t be where I am at today if I didn’t reach out to my family, friends and coworkers and humbly admit I couldn’t handle my situation anymore. I needed a helping hand, and I got hundreds of them in return.

Asking for help is not easy, but it is crucial. Trust me.

 

  1. Seek out others who are going through a similar ordeal

Another helpful piece of advice is to seek out others who are going through something similar to what you are dealing with. If you Google the issue – whether it’s a disease, a failure, a setback, whatever it is – you will undoubtedly find someone who has gone through it or who understands how you feel. It builds off the first point – community is essential. If you have a disease, rather than shut yourself in (which is the natural human reaction), seek out others who can understand what you are dealing with. Join a Facebook group, or an organization whose mission is to find a cure or provide services and support. It seems intuitive, but I know of many people who don’t do this, and it makes me sad.

 

  1. Don’t be afraid to fail

I am no longer afraid of failure, which is a good thing because I’ve encountered it over and over and over again, especially this year on my job search. I can stomach it because I have come to realize that anything worthwhile in life requires risk, and nothing worthwhile is given to you on the first try. If you fail 99 times out of 100, the one time that you succeed outshines the other 99 failures.

This notion has sustained me every time I fall. I am past the point where I can pick myself back up on my own. Every fall is a reminder that my body is failing me. But every time I end up back on my feet, and I take my first step on solid ground, I realize how worth it it is to get back up.

 

  1. Share your story!

When you get through the difficult times – and you will – share your story with others. When I finally opened up about my journey and wrote my first article – a piece for the Jain Foundation (whose mission is to find a cure for my disease) – a weight was lifted off my shoulders. Sharing your story will empower you and give you confidence, and just as importantly, it will help others. It doesn’t take much. Trust me, your story is not boring, and it will have an impact. Any small impact, even if it brings a smile to one person’s face, makes it worth it.

Keep in mind, the moment you overcome your difficulties, someone is experiencing that hardship for the very first time, and they don’t know where to turn. You can be that beacon of light for someone else, as only you can.

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If you have any questions about any topic on here, or anything that is not covered, please don’t hesitate to reach out to me, chrisanselmo@gmail.com.