Happy Thanksgiving!

Happy Thanksgiving everyone!

I hope you are all doing well, or as close to well as possible given the circumstances. The pandemic is not over yet, but we have come a long way from where we were this time last year.

Thanksgiving is a time for family and friends. One of the many cruel aspects of the pandemic has been that it prevented us from being able to see one another safely for far too long. Even now, with the benefit of vaccines, we are not quite back to normal, but at least there is a light at the end of the tunnel. Humans are social creatures. It is not in our nature to be separated for so long. Video conferencing, although a wonderful technology, does not substitute for a hug or for sitting at the dinner table surrounded by good company.  

Continue reading “Happy Thanksgiving!”

35

I turn 35 this week. Yikes! I am not sure how it happened. Well, I know how it happened but I am more surprised how quickly it happened. Three-and-a-half decades on earth.

Part of me still feels like a kid. I still look at the world with a curious mind. I love sports and ice cream and staying up way past my bedtime. My dream job is still to build large Lego displays all day.

On the other hand, I feel like an old man. I am an old soul to begin with, but this disease has only exacerbated my curmudgeonness (curmudgeoneity?) Staying up way past my bedtime now means going to bed at 11:30. One beer and I get a massive headache. I can’t name any song past 2015. That sort of thing.

But most striking, I feel like an old man because I actually feel like an old man. My body, once able to win hurdles races and walk for miles around Boston without breaking a sweat, is now in constant pain. I can no longer walk, and can barely stand, with assistance, for more than a few seconds.

This has been hard to reconcile with my age. 35, going on 85.

Continue reading “35”

Appearance on MDA’s Quest Podcast

MDA recently launched the Quest Podcast, hosted by Mindy Henderson, our new Editor-In-Chief of MDA’s Quest family of content. This podcast will explore issues affecting individuals living with neuromuscular disease and those who love them.

I had the pleasure of being interviewed for the inaugural podcast episode, “The Beginning: Receiving a Diagnosis”. It was a great conversation about what it’s like to receive a neuromuscular disease diagnosis, and how to deal with what comes next.

You can check it out here. Let me know what you think!

Crossroads

The beginning of the COVID-19 pandemic feels like yesterday. The calendar, however, says otherwise. March 2020 is now almost a year and a half ago. Although the origins of COVID can be traced back to late 2019, the world shut down in March, once it became clear that this was no localized outbreak, but a worldwide menace. It changed my life. It changed all our lives.

The pandemic has been a tragedy. It has been a grind, in every conceivable way. In the midst of great suffering, we have been forced to confront what is truly important in life.

Continue reading “Crossroads”

My Life In 700 Pages

Some good news after that downer that was my last post: I am finally done with the first draft of my memoir! The bad news: it currently checks in at 705 pages.

Fortunately for you the reader, the final product will not be 700 pages. I wouldn’t put you through that. I want you to buy the book after all. And enjoy it. And then recommend it to your friends. You probably don’t need to know what I ate one Wednesday night in 2012 (a burrito, for what it’s worth). A lot of the draft is blabber that needs to be cut down. Some of it serves as a placeholder to remind me what I was doing at the time, that I’ll eventually take out.

Continue reading “My Life In 700 Pages”

Final Steps

A couple weeks ago, I experienced a milestone in my disease progression that I knew was coming, but I still wasn’t quite prepared for: I stopped walking.

Technically speaking, I stopped taking steps forward. I can still shuffle around while holding onto my dad, but for all intents and purposes, I have taken my final steps.

Continue reading “Final Steps”

WEGO Health Patient Panel – Friday, February 26 at 12pm

Hi everyone!

I just wanted to let you know about an upcoming panel that I will be on to commemorate World Rare Disease Day. The WEGO Health Patient Panel is taking place on Friday, February 26th (tomorrow) at 12pm Eastern.

I will be joined by two other patient leaders in the rare disease space, Guadalupe Hayes-Mota and Lindsey Kizer.

If you would like to register, click here.

Hope to see you there!

Chris

Captain Tom, and How Age is Just a Number

On February 2, the world lost one of the heroes of the COVID-19 pandemic: Captain Sir Tom Moore. You might remember him from the early days of lockdown, when he made news for walking 100 laps in his back garden to raise money for the UK’s National Health Service (NHS).

When he began his endeavor, his goal was to raise £1,000 by his 100th birthday on April 30. Instead, he raised nearly £40 million.

Watching Captain Tom confidently grip his walker and amble around his garden was one of those hopeful, optimistic sights we clung to during those early weeks of the pandemic. It was such a simple story – an elderly man, a garden and a daily walk – but one that struck a chord in us all.

Continue reading “Captain Tom, and How Age is Just a Number”

Alex Trebek, RIP

On Sunday afternoon, I received a text message from my sister: Alex Trebek had passed away.

It was news that I had been dreading for a long time, but knew was inevitable. Nonetheless, it came as a surprise, even during a year of unpleasant surprises. I figured if anyone could survive for years with pancreatic cancer, it was Alex.

I call him by his first name because, let’s face it, to millions of people, including myself, he was family. He entered our living rooms every night and provided us thirty minutes of escape from the worries of the world. That is no small accomplishment in this day and age.

His consistency is what made him stand out. You knew what you were getting every night. Even in the midst of cancer treatments that would have broken the strongest among us, he never missed a day of work, taping right up until the end. And the quality of his hosting never diminished.

On a purely selfish level, I held out hope that I would meet him someday. It is no secret to my friends and family that I really want to be on Jeopardy! Part of the reason was to share a stage with Alex Trebek. I could have finished a Wolf Blitzer-ian $-4600 and it would have still been a thrill to stand behind the podium and take my shot against the best and brightest.

I will never get that chance, but my disappointment is a small trifle compared to the sadness of the moment. This is not just a loss for me, this is a loss for humanity. Alex Trebek was a national treasure, an irreplaceable exemplar of virtue in an age where decency and authenticity are hard to come by. Many times contestants fell flat on their face, and instead of saying “you clearly didn’t belong here,” he would say “it just wasn’t your day.” He was our biggest cheerleader.

However, what makes Alex Trebek stand out, even more than his virtue, was his humor. That was my favorite part about him.

Where do we start?

There’s this clip. And this. There’s the way he said genre. And the way he owned Conan O’Brien. He also was an acclaimed rapper.

Whoever replaces Alex Trebek will have enormous shoes to fill. They will never be Alex, but it is important that they don’t try to be. No one can replace him. But the show must go on. He would want it that way. He wouldn’t want a pity party.

Tonight, I watched the newest episode. There are only 30 or so episodes left. It hasn’t sunk in yet that he’s gone. When the last episode airs, and we enter the great unknown, it will be an emotional end.

But, despite the sadness, there is the satisfaction of a life well lived. I’m sure he is having fun (or pulling out his hair) reuniting with the SNL Celebrity Jeopardy crew right now.

I’ll take a life well lived for $2,000.

2020 Ralph and Theresa Anselmo Resilience Award

Hello everyone!

I hope you are all staying healthy and have been able to enjoy the summer weather despite the pandemic.

I am happy to announce that the Ralph and Theresa Anselmo Resilience Award is a go for 2020!

Thank you so much to everyone who has supported it the last two years. Together, we have been able to help five(!) students registered with the Disability Resource Center (DRC) at Northeastern University with living expenses, and in the process gain a little peace of mind.

To those unfamiliar with the award, here is a 2018 news article from Northeastern that talks about why I started the award:

https://news.northeastern.edu/…/heres-what-one-northeaster…/

This year, my goal is to fund two $1,000 awards for students registered with the Northeastern DRC. I waited a little longer this year to announce the award as I waited for additional information on what Northeastern planned to do for the upcoming year. As it stands now, they plan to have students on-campus, with additional protocols in place to keep everyone safe.

Even with the safety precautions, however, this is going to be a difficult year for Northeastern students, as they try to navigate classes, find a job/co-op, and live in the middle of a major city during a pandemic. In speaking with Northeastern administrators, they have said that this has been an incredibly stressful time for students and faculty. My heart goes out to them all.

As a result, this award will be more impactful than ever. Any amount of support you are able to provide is greatly appreciated, even if it’s just sharing the GoFundMe link with your network. I know times are tough. No amount is too small!

Here is a link to this year’s GoFundMe page:

https://www.gofundme.com/f/2020-anselmo-family-award

I am so thankful for all of your support. Stay safe!

Chris