My Role Models

Note: This post is a supplement to an article I wrote for the Muscular Dystrophy Association’s Quest magazine in January 2018, which you can find here.

I have also written about the importance of role models in this post

I have had many role models over the years who have helped me come to grips with my muscle disease. Some I have come to know personally; others I hope to meet one day. And of course, there are those I will never get the chance to meet.

The goal of this page is to list all the people who have helped me in some way. Each person, at some point in my life, helped pick me up when I was feeling down, and I am forever grateful.

Eventually, time-willing, I will write a blog post about each person to give them their due credit. As of right now, I will list them out, and provide a link to their story or website, so that you can learn more about them. If you are having a tough time, I highly encourage you to Google them or click on some of the links below. Contrary to how it seems sometimes, there are many extraordinary people out there in the world that we can learn from and emulate. Continue reading “My Role Models”

Loud Noises

The other day, as I was typing away on my laptop, trying to write a chapter in my book, the “F” key detached for what must have been the hundredth time. Somehow, the underlying pins broke off about a month ago, and, rather than spend $300 to have the entire keyboard replaced, I have been toughing it out ever since.

Enraged, I was tempted to take the key and throw it across the room, but knew that if I did that, the key would win, and I would have to avoid any words containing “F” for the rest of the book. Try to write a paragraph without the words “of”, “if”, “for”, or “from”. It’s not gonna happen.

Continue reading “Loud Noises”

Another Quick Update

So it turns out I may have jumped the gun a bit on my last post.

About a minute after hitting publish, I realized that I had forgotten a few recent news items, including, oh, I don’t know, a fundraiser that I helped organize for the last six months. My 31-year old mind is not what it used to be. But I can still name the 50 states and all the presidents, so at least I’ve got that going for me.

Since this is my own site and I answer only to myself, I can undo my omissions with a simple follow-up post.

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Approximate reaction after hitting publish.

First and foremost on my list of forgotten updates – the rousing success of the 4th annual Strength, Science and Stories of Inspiration fundraiser!

For those of you who are not familiar with the event, SSSI (as we call it for short) is a fundraiser that aims to bring together stakeholders in the Boston-area muscle disease community for a night of entertainment, storytelling and networking. It was started in 2013 by my co-organizers, Sharif Tabebordbar, Albert Almada and Eric Wang, muscle disease researchers who each have a family member with muscular dystrophy.

This year’s event was the third SSSI I have had the privilege of helping to co-organize, and it was our biggest crowd yet – close to 600 attendees! The night was chock-full of laughter and emotion, and built on (or is it upon? I can never figure it out) the success of our previous events.

We had two great patient speakers, Rob Besecker and Monkol Lek, and for the second year in a row our headliner was talented comedian, friend, and ALS family member Max Amini. In addition to our entertainment, we also awarded our very first research fellowship to Maya Maor Nof, a talented postdoctoral researcher at Stanford University. This fellowship has been a dream of ours for several years, so to see it come to fruition was both exciting and emotional.

Max on stage.

Overall, it was an exhilarating night, one that I recapped in an article for the Muscular Dystrophy Association (MDA) a couple weeks back.

We announced at the event that we are raising money for next year’s fellowship, so if you’d like to contribute, we are still taking donations! Here’s the link: https://www.gofundme.com/sssi2017

Thanks to Max’s photographer for this great picture. From left to right: Rob, Maya, Monkol, me, Max, Sharif, Albert and Eric.

My second update pertains to another MDA article. I was recently interviewed in MDA’s quarterly magazine, Quest, about searching for a summer internship while living with a disability. It’s a topic that I know very well, having dealt with it two years ago. I’ve talked to other patients with MD who have wondered if they could realistically go back to school. I wanted to share my story about my journey so that I could help others believe in themselves that yes, it is possible. School, internship, all of it.

It will require some extra planning, and it won’t be smooth sailing, but it can absolutely be done. In my internship experience, I relocated from Boston to New York City for a summer. Part of the reason I try to push myself is so that later on, I can use the knowledge gained to empower others to do the same thing. So many others have helped me in the same way.

Photo courtesy: me. Photo courtesy on the page itself: Jennie Kang.

And for my last update – also involving MDA (as you probably can tell by now advocacy is a major part of my life) – I was a last-minute keynote speaker on October 7th!

It was a financial summit sponsored by MDA which took place at the Marriott hotel in Quincy, Massachusetts. The aim of the event was to provide financial advice and planning for MDA families, as this disease can be a burden on a family’s finances. Originally, the MDA national goodwill ambassador, Joe Akmakjian, was supposed to be the keynote, however he got sick and was unable to attend. I was asked Thursday afternoon, and a day and a half later, I found myself in front of a room full of MDA families.

It was a whirlwind day to say the least. Overall, it was an interesting experience – I was told I could just talk about my patient story, but it was a financial summit, so I knew I had to twist my usual story a little bit and talk finances, and how I was able to budget out for things like adaptive equipment and business school.

Although it was last-minute, I was glad to impart some financial wisdom on the crowd, and I know my dad was proud, since after all, he was the one who imparted the wisdom on me in the first place. Without my dad, I don’t know if I would have had the same financial discipline. Well, maybe I would have, but it would have taken much longer to learn.

When I got home Saturday night, I was whipped. The fatigue lasted a couple days, into Tuesday. It was only a week after the Strength Science fundraiser, which also left me tired for a few days. Believe it or not, it can be tiring sitting in a wheelchair all day!

All in all though, it’s been an eventful few months, fatigue aside. As long as I’m able to do all this (without impacting my day job of course), as long as my parents are willing to be my chauffeurs and caregivers, I will continue to stay active in the muscle disease community – writing, speaking, whatever it takes.

I don’t do well sitting still. I think you can tell by now.

 

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.

Reflections and Resolutions

(Author’s Note: I was originally going to write this post before the new year, but got a little distracted by this bald eagle webcam and college football…it happens.)

I always used to make New Year’s resolutions, but this year, I’m just not feeling it.

It is quite an interesting phenomenon if you think about it. Every January 1st, millions of people around the world pick something in their lives that they vow to improve. We see this one day on the calendar as a clean slate, a source of hope and renewal, just because it is day one.

Every once in a while you hear a success story. For example, I know of someone whose New Year’s resolution was to lose weight, and lo and behold, they lost 50 pounds. For the rest of us, however, more often than not, resolutions end in failure.

I know that has been the case for me. That’s not to say making a resolution is pointless. There is no shame in sticking your neck out there and attempting to improve some facet of your life. In fact, it should be celebrated! I’ve merely come to the conclusion that I’d rather not set myself up for the inevitable failure and disappointment.

This year, instead of making a New Year’s resolution, I decided to take a look back at 2016, reviewing lessons learned while celebrating my many accomplishments that might otherwise fade into obscurity without proper reflection.

2016 was a unique year for me, full of highs and lows I’ve never experienced before. Above all, it was a year of transition. As someone who likes planning and structure, I found myself begrudgingly surrendering to forces outside of my control.

We’ll start with the lows, to get them out of the way. After graduating from business school this past May, I still haven’t found a full-time job. I have been blessed with two great part-time opportunities that have kept me afloat these past few months, but the ultimate goal has proven elusive. It weighs on me every day. Financial insecurity, especially with a disability and with student loans breathing down my neck, keeps me up at night. Thankfully, I planned for this possibility, and I take full responsibility for the situation I am in, so I will rise above it.

Besides, everyone despises job hunting. Repeated, unrelenting rejection is just plain miserable. Through my circumstances, I have come to know rejection quite well, and have learned to harness it into bigger and better opportunities. But even I have my limits. Constantly being rejected for a job, or worse – not even getting back a response – is incredibly frustrating. I just have to keep grinding. I know that the perfect opportunity awaits me out there, and I’m telling you, when I finally do get hired, I will give everything I have to the company lucky enough to hire me.

But I must also confess, I have been picky with my job search. The truth is, I just don’t have the energy anymore to choose “any job”. It has to be the right fit, an opportunity where I can harness my creativity and communication skills, for a company whose mission I believe in wholeheartedly. The role also has to pay well enough to support the additional expenses that my disease will inevitably incur – such as an accessible apartment, personal care attendants, adaptive equipment, etc.

For the time being, I’ve moved home with my parents in West Hartford. I love my parents, and love being able to see them regularly, but we are all in agreement that I am destined to be on my own. I’ve been in the Boston area the last 12 years and love the city to death. It is where I belong. Despite the move, I am fortunate that I have a home to come back to, and the support that I need to stay afloat during this challenging time.

The greatest challenge in 2016? My weakening body. I lost a tremendous amount of strength last year. I finished school just in time, before my disease really started to affect my quality of life. I don’t think I would survive school in my current condition, at least, not without taking some time off to obtain additional resources. It certainly wouldn’t be impossible, but it would be significantly tougher.

For example, at the beginning of 2016, I could get out of a chair without assistance from another person. Now, it’s impossible. Unless I am sitting on a high chair, I need someone to bear hug me to get me into a standing position. At the beginning of the year I was able to go up small steps and inclines with relative ease. Now, it’s a treacherous affair, given how much upper body strength I’ve lost. Declines are just as difficult. Without upper body strength, my crutches become useless if my shoulder gives out.

I’ve also fallen several times this year, and on two occasions, injured my foot. One fall required x-rays; fortunately they came back negative. The pain lingered for weeks, however.

Look, I know what my future holds. As soon as I lock down a job, figure out where I am going to live, and get a few other things squared away, I am going to buy a wheelchair, assuming of course that an injury doesn’t force my hand.

It is time.

I am past the point where I am afraid of what others will think of me in a chair. In fact, I welcome the freedom a chair will provide me. Sure, there is a laundry list of considerations and questions that remain related to how I will adjust to living in a wheelchair, but, as a whole, I know that it will improve my quality of life. I don’t know what it’s like to walk a few blocks care-free anymore. If I can get that freedom back while rolling down the street, so be it.

So yeah, there are a few things on my mind. But you know what? 2016 was also one heck of a year. To recap:

  1. I graduated from Boston College’s MBA program in May. At graduation, not only did the pastor read a quote from one of my blog posts, I also received a standing ovation when I received my diploma, which was completely unexpected (and also flattering). I nearly fainted!
  2. My time at BC allowed me to make many, many close friends with classmates and faculty, friendships which I will cherish the rest of my life.
  3. I went to Texas. I have never been to Texas.
  4. I met my nephew Connor for the first time in August. Although born in October 2015, I was not able to see him until the summer. He is a bundle of joy. I also got to spend a lot of quality time with my niece Sophia.
  5. I finally committed to writing a memoir of my experience with Miyoshi Myopathy. Best of all, I have followed through on this commitment and am making substantial progress. I hope to have a first draft done in early 2017.
  6. I had a piece published on the Boston Globe’s STAT website in February. I was one of the first patients to ever be featured in their “First Opinion” section.
  7. I had the honor of speaking at several exciting events and locations, including:
  • The 2016 Rare Disease Day celebration at the Massachusetts State House (~400 people)
  • The Muscular Dystrophy Association’s “Fill the Boot” camp at Mohegan Sun Casino (~500 people)
  • “Speak Up” storytelling event at Real Art Ways, Hartford (~200 people)
  • The Jain Foundation’s patient conference in Dallas, Texas (~75 people) – here’s the video
  • Boston College “Bounce Back” resilience panel
  • Boston University Medical School genetic counseling class
  • Northeastern University Student Alumni Association club meeting
  • St. Thomas church youth group in West Hartford

Looking back on that list, I must say that I am not good at celebrating my accomplishments. I dismiss them too easily, mainly because I am never satisfied. Maybe that will be my resolution this year – celebrate when things go well! I dwell so much on the negative sometimes, that I forget to also savor my successes. I deserve to give myself a break from time to time.

2016 was, in totality, a very good year. Maddening and frustrating? Yes. But I made significant progress, providing a foundation for success in 2017. Whether I get a day job or live a life as a writer and traveling motivational speaker, I will not stop until I am at a place where I know that all of my struggles have been worth it.

All in all, 2017 is going to be an interesting year. I have no delusions that there will be more turbulence ahead. But I must remember, against all odds – after years of wallowing in self-pity and hating what my life was becoming – I made it this far.

No matter the uncertainty in my future, I must find a way. That is the only resolution that matters.

Singin’ in the Rain

This is the second letter in a two-part series looking back on life in my 20s. Today’s post is a response letter written from my current, 30-year-old self to my 23-year-old self. The first letter in the series can be found hereTo learn more about the series as a whole, click here


Dear Chris,

Greetings from the future! 2016 is an interesting time to be alive, to say the least. Apple is about to release the iPhone 7. Pluto is no longer a planet. NFL games are now being broadcast on Twitter. Brangelina is no more. I won’t even get into what is going on in the presidential race – you wouldn’t believe me even if I told you.

Before I go any further, I have to admit, I have no idea how to address you – you are me, I am you, right? Either way, I am treating you as a separate person for the purpose of this letter. As your older self, I am basically your older brother anyways.

Technicalities and jokes aside, you brought up some very serious concerns at the end of your letter that I want to discuss. You asked a lot of questions – deep, existential questions – yet you seemed hesitant as to whether or not you wanted to hear the answers to them. I initially considered going into great detail and telling you exactly what will happen, but I have decided not to do that. Frankly, there are some things that are better left unsaid, some experiences I don’t want you to have to come to grips with at this moment. It would be counterproductive, and it would get you too concerned about specific details that would detract from the overall message I want to convey.

The next seven years for you are going to be full of situations and events that, if I describe them now, are going to sound terrifying, but are easier to comprehend in the proper context. The best context is to experience these moments as they happen. There is no substitute for living through your circumstances. It would be unjust to try and condense them into the framework of this letter.

There is going to be rain ahead – there is no avoiding it. Parts of this letter will scare you, even if I don’t go into specific, day-by-day details. But let me reassure you when I say, for everything that will happen, you will have the support you need to get through it. Trust yourself, lean on your family and friends, and you will make it through the rain.

I know you were most anxious to know my current status, so I will save you some anxiety and let you know that yes, I can indeed still walk, although with great difficulty. The neurologist’s prognosis, I have to say, was spot on. You are going to experience increasing muscle weakness over the next seven years, leading up to the condition I am in today – still walking, but quite weak. To picture it, I walk around and have the balance of someone who has been up all night drinking. I’m sure you have NO idea what that’s like….look it up it if you have to.

The path ahead is going to be as bumpy as you imagine, and then some. This disease is going to test what you are made of each and every day – physically, emotionally, mentally and spiritually. You are going to have to live through this process.

But each experience, every bit of adversity that you will face, will help to forge your character. My identity today is a testament to all that I have learned because of this disease. It will turn you into a more caring, empathetic individual. Your relationships will be deeper, and as you share your vulnerabilities with others, they will return the favor. Every person you meet is coming into your life for a reason. Trust me on that – I have the benefit of hindsight. You will have many more friends than you have now, people who sincerely care about your well-being. Cherish these relationships – they are everything.

I know you are probably still worried, no matter my reassurances. Worry has always been a big part of the equation. It will never go away – in fact, I still worry to this day. The key, however, is to control worry to the best of your ability. It’s a voice within that you can either choose to hear or ignore. Besides, no one ever quite vanquishes fear.

Mark Twain summed it up best: “Courage is resistance to fear, mastery of fear, not absence of fear.”

Setbacks will happen, including falling, but you must pick yourself up, wipe the dirt off your shoulders, and move forward. How is this possible? Although I will not divulge specific events, I will give you some advice that will allow you to persevere. I will tell you what I’ve learned, so that you are more prepared when the time comes.

Consider this letter not everything you want, but rather, everything you’ll need.

At the end of the day, it all comes down to you. There are some things that you will not be able to change – this disease for example. There are some things that you will want to change, like trying to find a cure as quickly as possible – that ultimately is also out of your control. These external forces will weigh on you and beat you down, but the only way you will truly rise above your challenges is to separate what you can control from what you can’t, then work like hell to make the best life for yourself based on what you are able to change.

You alone can control the inner discourse in your mind. You have the power to be positive, just as you have the power to be negative. The next seven years will be a continual battle between the two, but being positive is a possible outcome. I would argue it is a necessary outcome. You can create for yourself misery or happiness, no matter your circumstances.

It will take practice. To this day, I still struggle to be positive, and even on my best days, I’m not Mr. Optimist. In fact, you will soon learn about, and be compared to, Grumpy Cat. That is correct – your future coworkers will compare you to a real-life cat with a permanent frown. But as long as you strive for optimism as an ideal, that is the greatest step you can take.

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Your spirit animal.

That is not to diminish the difficulty of the time ahead. The symptoms, as you are experiencing, are starting to manifest, and you soon will lose abilities you once took for granted. Emotionally, it will be difficult to grasp and comprehend. You will get discouraged, but I say let it happen. Grieve for the able body you used to have. During this time, focus on staying afloat, moving forward in your life where you can. Enjoy life to the best of your abilities. Absorb the traumatic experiences, because someday they are going to be the key to your success. But grieve, then let it go. You can cry all you want, but once you are done crying, the situation remains unchanged. The disease is still present. If you don’t resolve to move on, you’ll be stuck in sadness forever.

Part of the sadness will be due to the fact that your body will soon need assistive devices. This is a hard reality to accept, but it is vital that you don’t deprive yourself of anything that can improve your mobility. When you identify the need, embrace assistive technology sooner rather than later.

The fear of losing the ability to walk will consume you. The stigma associated with using crutches, a scooter or a wheelchair isn’t easily overcome. But you must understand that the positives far outweigh the negatives. For example, I just started using a scooter within the past couple of years. At first I was hesitant, but once I realized that I could venture down the street without worrying about falling, and that I could take random turns down side streets without regard for distance, it was liberating. Besides, assistive technology has improved significantly in the last seven years. There are robotic exoskeletons that allow the paralyzed to take steps. Even wheelchairs have improved – they now have models that allow a person to stand and have conversations with people at eye level.

I know at your current stage, thinking about assistive technology is frightening. After all, what will people think of you? The truth is, no one really cares! I mean, sure, some people will stare, but not as many as you think. People nowadays are so absorbed in their smartphones, and those not on their phones are so afraid to make eye contact with strangers that they stare at the ground. We have become an introverted generation. As for the people who do stare, or who make an off-hand comment about you or underestimate you based on your disability, they are not worth your mental energy.

You must not let every little perceived slight bother you. Some people will talk about how the world is ableist, and they will indict society for being unwelcome to the disabled. And yeah, ableism does exist, but if you get offended by everything you experience (a stair to enter a building, or a low toilet), and if you internalize each slight, it will eat you up on the inside and give you unnecessary stress. There is always a time to speak up, but I believe that if you can choose between partnering with others to find solutions or blaming them, seek solutions. I have found that many people are not intentionally ignorant, and once they have been educated, are more than willing to make accommodations and help you out.

Your story, once you have lived through the difficult times, will be tremendously powerful to others. That is part of the reason I want you to live through these experiences without forewarning. This painful wisdom will one day be the source of great strength. You don’t yet know this, but you are a natural storyteller. It may seem difficult to grasp now, but there will come a time when you will get on stage in front of 500 people without any fear. And to think, more people are afraid of public speaking than of dying! You will become masterful at sharing your patient experience. It will educate people about disability and help to inspire others to overcome adversity in their own lives. It will enable you to connect with people on a deeper level, a level that people rarely experience in their day-to-day interactions. Your faith in humanity will be restored.

Everything positive that will happen for you will come as a result of sharing your vulnerabilities. Your story will help others, and it will help you as well. Doors will open for you that never would have opened without this disease. These exciting opportunities will make what you are going through much easier to deal with. It will give you a purpose you’ve never had before, and a motivation to maximize your impact on the world. If you didn’t have this disability, would you have the same level of empathy and appreciation for others? Honestly, I don’t think so.

However, you can’t get to where I am at today without going through the dark times. Although a difficult period of your life is ahead, it will serve a noble purpose. It is the training, the wisdom you need to gain, to fulfill your mission in life.

There were times – times that you will soon experience – where I wanted to blame God for everything that has happened to me and turn away. Look, you have every right to be upset, but trust me when I say that it all makes sense now. The hurt you will feel, the fear of the future, the anger – they are a natural part of the grieving process. There will be many moments that will seem unbearable when they happen, but only later on will you truly know why they occurred. It may take a few years to fully understand, but you’ll figure it out eventually. God knows what he’s doing, so you just have to trust the journey.

In fact, the day you wrote your letter is a perfect case in point. That three mile walk you went on after coming home from the doctors? It is no coincidence that your path took you back to Boston College, the scene of your first major rejection. In a couple years you will begin thinking about getting an MBA. Let’s just say they will not be sending you a second rejection letter.

As I said before, doors will open for you, and they will make this life worth it. I have achieved many goals, although I haven’t achieved all of them yet. I am still looking for a significant other, and given that I am at peace with a lot of what has gone on in my life now, I like my chances! Other unfulfilled goals include winning a Pulitzer Prize and an Academy Award. You might think I’m crazy, but I say shoot for the moon. Even in a weakened state, it is important to take risks, and not be afraid to fail.

In closing, although I’ve covered a lot here, it is impossible to explain everything that will go on in the next seven years. You will deal with emotions and experiences that will seem overwhelming at the time. Countless band-aids will be opened to stop the bleeding, numerous painkillers taken to soothe the pain. Tears will be shed. But, no matter how many times you fall, no matter how dark the clouds are overhead, don’t give up.

The rain is unavoidable; you might as well splash around and enjoy it.

All the best,

Chris Anselmo

September 28, 2016

singin-in-the-rain-di
Metaphorically sing, but please, for the sake of others, do not actually sing.

 

P.S. – I have spent a significant amount of time trying to see if I can share with you winning Powerball numbers, but I have to find a way to ensure I don’t create a ripple effect that will have disastrous consequences. Last thing I need is to become a millionaire, buy a spacecraft I don’t need and crash into an asteroid. Let me get back to you on this one.

The Gathering Storm: A Letter from my Younger Self

This is the first letter in a two-part series looking back on life in my 20s. Today’s post is a hypothetical letter written from my 23-year old self to my present-day self. In November 2009, at age 23, I went to a doctor’s appointment that would change the course of my life. This letter captures my thoughts and emotions right after I left.

To learn more about this series, click here


Dear Chris,

I’m desperate. I need answers, and I need them now.

I’m sitting here on a bench in the sky lobby at Beth Israel Hospital. I just came out of my first neurology appointment, and it was traumatizing.

Words are hard to come by at the moment. I’m dazed. My body feels heavy, almost detached. I’ve been staring right into the sun reflecting through the window and I don’t even care.

So many thoughts are running through my head, so many emotions. Above all, I’m afraid. My future has been turned on its head, and I don’t know which side is up.

The doctor confirmed that I do indeed have dysferlinopathy, which matches the diagnosis I was given in high school. That part isn’t shocking – that’s why I scheduled the appointment. Unfortunately, I learned for the first time today what that diagnosis actually means for my future.

It turns out, the weakness I felt in my legs while running wasn’t because I was out of shape, it’s because I’m getting weaker. Now. At age 23.

I had a sense it was related to my disease. I haven’t felt right for a while, and I’ve noticed that I don’t gain strength at the gym anymore. I just went for a run the other day and could only run for a few minutes before fatiguing.

I don’t know what I expected the doctor to say, but I guess I felt that deep down it was a condition I could manage somehow, or that if I rested and did low-impact exercise, the strength would come back. I thought maybe I was stressed out or overdoing it, even though I am as active as the average person. It never occurred to me the strength, once it left, was gone forever. I never expected that I would weaken this quickly.

I told him that I thought it was something that would happen to me later in life, at a slower rate, and that it would be a minor nuisance more than anything. He shook his head and told me the symptoms are already manifesting. Already manifesting? How is this possible?

I’m sure you remember this day well – I know I’m not telling you anything you don’t already know. But please bear with me. I just don’t have the benefit of hindsight like you do – I’m living it for the first time right now. It sure feels like this is a turning point in life. Is it? Is there no going back to the way things were after today?

He said I might not be able to walk by the time I’m 30, that many people are not ambulatory by that age. He tried to reassure me that since there are so few patients, the variability in the disease progression is great, so nothing is set in stone. But what’s the difference if it doesn’t happen by 30? It’s going to happen, probably within the next ten years.

Well, future Chris, am I still walking at 30?

I’ll be honest, I don’t see how I can go back to living life the same way with this knowledge. I feel like the storm clouds are gathering in the distance, and life is going to become increasingly difficult. I can feel the anxiety build within me. I probably am overreacting, but I’m not thinking rationally at the moment. I’m tired, I’m stressed, and this is a lot to process mentally.

Speaking of being rational, how the hell could I have been so naïve? I’m someone who always tries to be objective and collect the facts. How could I have gone through college without bothering to research what this disease will do to me? I should have known. I feel irresponsible, like I let myself down, wholly unprepared for what I would hear today.

If I knew, I would have studied abroad. I would have traveled. I would have gone on Spring Break. I would have prioritized my life differently. I would have done so many things had I not been so blissfully unaware and ignorant. I’m an idiot.

On the other hand, thank God I was blissfully ignorant. For four years I didn’t have a care in the world about this disease. What if I had been aware of what was to come? Would I have had the same experience? I say that I would have traveled and done all these fun things, but is that true? Maybe I would have been too depressed to go outside.

The truth is, I’ll never know. The facts are the facts, and I’ll debate the pros and cons of knowing earlier another time. Right now, I’m just so overwhelmingly….devastated. I know it’s not a death sentence, thank God, but life is not going to be the same. The more I think it through the more I grasp the enormity of it all.

There was one moment today that was especially difficult. Towards the end of the appointment, as I sat there on the table processing the doctor’s words, I found myself stalling, trying to avoid asking the one question I knew I had to ask, but already knew the answer to. Eventually I mustered up the courage.

Are there any treatments?

He leaned back in the chair before answering, which I knew was a bad sign. He admitted it was going to get worse, that I could eventually end up in a wheelchair, but unfortunately, there’s nothing they can do to stop it. He cited some trial in Germany or something, but he said it was ineffective. Instead, he stressed the importance of controlling the disease, to slow the progression. Eat well, get plenty of rest, don’t exercise too hard, don’t drink too much, that sort of thing.

He probably said more after that, but I had spaced out by that point. He ended by recommending that I go see a physical therapist in order to maintain my strength, but seriously, what’s the point? No matter what I do, it’s going to get worse. Even if I delay the symptoms, they are eventually going to manifest.

As I sit on this bench, I can’t help but wonder what life will be like at 30. I need that answer. I need to know what to expect in the next few years. I am done with the blissful ignorance. I have so many questions, questions that I am afraid to ask but I have no choice. I’m trying to suppress my thoughts, but my subconscious is tormenting me.

Please, be honest. Will I be able to overcome this?

Will I be able to plan for my future?

Will I be able to buy a house?

Will I find a girlfriend who will accept me despite my disability?

Will I look at myself differently, or be treated differently by society?

Am I going to fall and break something?

Will I be depressed?

Will I still be walking?

And I hate to ask this, but it’s really eating me up inside – is this life worth it? Will I be happy?

On second thought, I don’t know if I can handle the answers to these questions. I’m clearly scatterbrained right now, but I’m so scared. So much in my life is going to change if I’m getting weaker. There is so much I haven’t done, so many things I’ve taken for granted that I know I’m going to lose the ability to do. I am already low on self-esteem and confidence to begin with. To not be able to walk, or lift my arms to feed myself – this seems like it is going to be too much to bear.

Oh what am I saying, I need to know! Please, don’t hold anything back. Tell me what is going to happen so I can prepare to the best of my ability. So I can enjoy the mobility I have now before it’s taken from me. I need a map, a compass, anything to get me through this storm that’s coming.

Above all, I need hope.

Sincerely,

Chris, age 23

November 20, 2009