July 2020 Update

Hi everyone!

I hope you are enjoying summer and staying safe (or if you are in the Southern Hemisphere, enjoying winter). Even with COVID-19 wreaking havoc all over the globe, it is important to enjoy the little things when you can. For me, going outside is what keeps me sane. Not that it’s stopped me from talking to animals, but that’s another story.

A few quick housekeeping updates today. I just wanted to let you know that I’ve re-organized and added a few links to the right-hand side of the front page of this site. Some of the links no longer worked, so I’ve removed those as well.

Here are a few new links to highlight:

Optimize Yourself Podcast – I was honored to speak on Zack Arnold’s podcast in 2018 about my personal journey and to provide advice on dealing with adversity when life gets tough.

STAT News – On a whim one weekend in March, I wrote a letter to healthcare providers, during the height of the outbreak here in the northeast. My admiration for all healthcare workers, from doctors and nurses to janitors and front desk staff, remains just as strong as ever. The longer this goes on, the more we are going to need to support them once it’s all over.

I also have a couple of speaking engagements coming up this weekend, which is exciting. I always enjoy the opportunity to share my story. Although this is a small concern compared to everything else going on in the world, I really miss traveling to conferences. I miss speaking in front of live audiences. I miss meeting new people, seeing familiar faces, eating good meals, learning new things, and of course, the free swag.

This year, we were scheduled to go to Orlando, Cleveland, DC and Boston. And with the birth of my nephew last week (!), we would have gone down to North Carolina to see him. But unfortunately, that won’t be happening anytime soon.

2020 has made clear that life doesn’t always go the way we expect. Life often gets in the way of our hopes and ambitions, and we realize that everything we took for granted was fleeting all along. “When humans make plans, God laughs.”

But, life is all about how we respond to challenges. One such adjustment we have all had to make is transitioning to a virtual environment. Fortunately, several of these conferences are still taking place, and the panels I was scheduled to be on will be virtual instead. The only downside is I will have to wear a collared shirt and comb my hair. And maybe take a shower.

This weekend, assuming I can solve the challenge of looking like a real human being, I will be speaking on two panels. On Saturday, I will be participating on the Drug Discovery Roundtable at the MDA Engage LGMD Symposium, an online, one-day event focused on the latest research and clinical advances in Limb-Girdle Muscular Dystrophy. I am excited to share my perspective on how patients can participate in clinical research during this exciting time in LGMD drug development.

Then on Sunday, I will be participating on a panel for the NORD Living Rare Forum. This is the event that was originally going to be held in Cleveland this past May. I’m glad that the conference is still taking place, even in virtual form. NORD conferences are always a great time. The title of my panel is “Psychology of Rare: PTSD, Depression, Evaluation, Diagnosis and Therapy”, a heavy topic but one that is relevant to the rare disease community. It is a topic I know well, for better or worse, and I am confident that it will be a valuable discussion for all attendees.

All in all, I am keeping busy to the best of my ability. I am hoping and praying that we will soon be able to see one another safely again. In the meantime, please stay safe and healthy.

 

He listened for two minutes then scurried away. Even animals don’t want to hear about 2020.

 

Quarantine Reflections

When I lived in Boston, it became a running joke that I was an accidental trend-setter. Every neighborhood I either lived or worked in became popular as soon as I left.

In 2008, I lived in an absolute dump of an apartment on Boylston Street, right behind Fenway Park. (It sounds cool on paper but trust me, it was a dump.) A year later, I moved out, and almost overnight, luxury apartments and restaurants popped up out of thin air.

In 2010, I was working for Thomson Reuters in Boston’s Seaport neighborhood. At the time, the building complex I worked in, a cluster of 100+ year-old brick buildings, was surrounded by lifeless parking lots. There were only two or three bars nearby. I left to go to another job, and once again, a new neighborhod pops up out of thin air, and is now one of the busiest places in the city.

Same thing with Oak Square, Brighton and Central Square, Cambridge.

Why am I telling you this?

Continue reading “Quarantine Reflections”

Crossroads

I was going to write an end-of-decade wrap-up last week. I was, I swear. Then I kept procrastinating, and procrastinating, and procrastinating, and next thing I know, it’s a new decade.

Oops.

I have to admit, I am not a big fan of contrived wrap-up posts. I tend to write only when inspired, which is on average about once per month. I don’t like to write just to write. But I had to at least acknowledge the conclusion of the 2010s. The decade was only about a third of my life, but for all intents and purposes, it was a lifetime.

At no point in the 2010s was I asymptomatic. It’s hard to wrap my mind around this fact, but I dealt with symptoms of my disease for the entire decade.

I can no longer remember what it was like to have full mobility, with no second thoughts about walking or running or climbing stairs. I don’t remember what it’s like to live spontaneously. So much has changed in just ten years: Continue reading “Crossroads”

Pete’s Legacy

The notification that I had been dreading for five years popped up on my phone Monday afternoon.

Pete Frates, ALS advocate who helped turn the ALS Ice Bucket Challenge into a worldwide phenomenon, had passed away.

This news did not come as a surprise. But regardless of whether or not it was expected, the news pierced my soul. It hurt. I felt like I had lost a good friend, even though I never met him.

I had followed Pete’s story ever since I first learned about the ALS Ice Bucket Challenge in the summer of 2014. Even as his physical condition deteriorated over the years, his spirit remained defiant. His perseverance through hardship was the example I needed during an incredibly difficult time in my life.

Continue reading “Pete’s Legacy”

A Post I Wrote on LinkedIn

Hi everyone,

Quick post today. Just wanted to let you know about an article I self-published on LinkedIn called “‘I Can Do This’​: Six Ways to Handle Job-Related Adversity and Get Your Career Back on Track.”

Why did I write it? In the last few weeks I’ve had conversations with friends who are dealing with job uncertainty in some way. A couple have lost their jobs, and several others feel dissatisfied in their current position or are fearful of what the future holds.

Of course, as I’ve written about many times on this blog, I underwent my own job-related challenges last year. Considering my goal in 2019 is to write more advice-related posts that draw on my life experience, I figured this was a good place to start!

Let me know what you think and feel free to share with anyone who might benefit from it.

2018: A Year in Review

2018 was a unique year in many ways. It was a year full of twists and turns, highs and lows, excitement and monotony. Considering how I started the year, to be where I am today is nothing short of a miracle.

After all, it was only 365 days ago, on December 31, 2017, that I was down on my luck. I was newly unemployed, depressed and questioning the trajectory of my life. Only three weeks before, I had made the momentous decision to quit my job as a product manager at a medical diagnostics company, unable to deal with the constant stress of a role that my heart wasn’t into. It had reached the point where I was always stressed, anxious and unable to get a good night’s sleep. What good was having a job if it was going to kill me in the process?

Continue reading “2018: A Year in Review”

The Next Chapter

When I started business school in 2014, I knew that upon graduation I wanted to work either for a nonprofit organization whose mission is to find a cure for muscular dystrophy or for a pharmaceutical company developing a drug that could one day help my condition. I wasn’t as worried about what function I’d perform, so long as I bought into the organization’s mission and I felt I was making a meaningful contribution. I’ve always believed that it’s better to have the wrong role at the right organization than vice versa.

It took a little longer than I had hoped, but I am happy to announce that, two-and-a-half years after graduating from Boston College with my MBA, I have found the job that I was looking for. The job that made all those nights studying for exams, all those presentations and networking events and job interviews, worth it. On August 1st, I started full-time at the Muscular Dystrophy Association (MDA) as a Market Intelligence Manager.

Continue reading “The Next Chapter”

Op-Ed in the Hartford Courant

Hello everyone! I hope you are having a great Sunday.

I wanted to quickly share an opinion piece I wrote for my hometown paper, the Hartford Courant:

http://www.courant.com/opinion/insight/hc-op-insight-anselmo-getting-up-afer-dark-times-20180710-story.html

I wrote the piece on a whim, after learning about the suicide of Anthony Bourdain, who I was a big fan of and got the chance to meet back in 2012. There is a lot of despair in the world today and I felt – I hoped – that by sharing my story, I could show others that what helped me through my struggles was not some innate desire or ability, but rather a skill that everyone has – empathy. It’s a skill worth fighting for, even in this broken world.

I hope you like it!

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Crash and Burn

My life seems to be moving in fits and starts these days. Two steps forward, one step back.

If you have been following my journey for any length of time, you know this is nothing new for me. It comes with the territory of living with an adult-onset muscle disease. Pick your favorite metaphor – life with this disease is a roller coaster, a series of peaks and valleys, a twisting and turning road. Left, right, up, down – the path is never straight or level. The lack of continuity is often maddening, and always frustrating.

I’ve learned how to keep a level head through it all, but sometimes, life can be too much. Sometimes, no matter how hard I fight, I have to admit defeat. Not a lost war, but a lost battle.

Continue reading “Crash and Burn”

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”