Category: Daily Musings

Limb-Girdle Muscular Dystrophy Awareness Day

On By Chris AnselmoIn Daily Musings, UncategorizedLeave a comment

September 30th is International Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day. It is a day to educate and bring attention to a group of similar conditions that affect the shoulders, hips, arms and legs. It is also a day to celebrate LGMD patients, their caregivers and family members.

I have LGMD type 2B, also known as dysferlinopathy and Miyoshi myopathy (actually there’s subtle differences between them, but for all intents and purposes, they lead to roughly the same outcome.) As of this writing, there are more than 30 subtypes of LGMD identified. They actually ran out of letters in the alphabet, so they are beginning to switch over the classifications to D1..2..3.. and R…1..2..3.. (D for dominant and R for recessive).

It is not the easiest disease in the world to live with. That is probably an understatement – it is quite difficult! You only have to look at my other blog posts to see what it’s been like to live with a weakening body. Yet, despite the difficulties, I have had the chance to meet others living with the various LGMDs and it has made all the difference in navigating the ups and downs of this condition. Many members of the community are my role models, and I try to be that to others. They are what make this day so special.

There are many resources to learn more about LGMD. The best aggregate resources are:

The LGMD Awareness Foundation

The Speak Foundation

The Muscular Dystrophy Association

For me, The Jain Foundation has been a life-changing organization, as they are working on my particular condition and have been a valued resource along my disease journey.

If you have any questions about what it’s like to live with LGMD, or regarding any other LGMD topics, I’m always happy to connect!

Portraits of Resilience Storytelling Event on Feb. 11

On By Chris AnselmoIn Daily Musings1 Comment

Hi everyone!

I hope you are having a safe and healthy start to the new year. I can’t believe it’s already February.

Brief post today. I just wanted to let you know that I will be taking part in a storytelling event on Feb. 11 called “Portraits of Resilience”, hosted by Inspire and Health Story Collaborative. (If you follow me on social media you will recognize that this is the first time I’ve called it by it’s correct name. It’s not Portraits IN Resilience, Chris. Sigh….)

A Post I Wrote on LinkedIn

On By Chris AnselmoIn Daily Musings1 Comment

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.

2019 Blog Topics – Welcome Your Input

On By Chris AnselmoIn Daily Musings2 Comments

Hi everyone,

I hope everyone is having a great start to 2019!

I am planning out my content calendar for the next few months and wanted to quickly reach out and ask my readers: Are there any topics you’d like me to write about this year? Anything related to my patient experience? Random subjects that have nothing to do with disability?

Let me know! I welcome your input.

At least, as long as it’s something I want to write about…

Op-Ed in the Hartford Courant

On By Chris AnselmoIn Daily Musings8 Comments

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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First Place!

On By Chris AnselmoIn Daily Musings6 Comments

This afternoon, after waking up from a nap (what can I say, I get tired easily), I checked my email and learned that my blog post for the Clara Health writing contest won first place! I thought my entry was strong, but I never entertained the thought that I’d place, let alone win.

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As someone who rarely wins anything, outside of the occasional fantasy baseball league, winning this contest is a huge accomplishment for me. The cash prize certainly is nice, but even more important, the contest did a great job of highlighting and featuring an underutilized asset in the healthcare space – the patient experience. The contest was a great way to compile these experiences and showcase them to a larger, non-patient audience.

Here is a link with all the entries to the contest. It is well worth the read, and shows that there are a lot of talented patient writers out there whose voices deserve to be heard!

Rare Disease Day 2018

On By Chris AnselmoIn Daily Musings7 Comments

Today is one of my favorite days of the year: Rare Disease Day. Held annually on the last day of February, it is a day to celebrate those living with rare diseases, and also to raise awareness for the many different types of rare diseases that exist in the world. And there are many.

I consider it to be one of my favorite days, not because I enjoy having a rare disease (let’s be serious!) but because it brings out all the wonderful feelings that make life so meaningful – love, community, passion – just to name a few. What you won’t find, however, is pity – just the opposite, in fact. Rare disease patients don’t want you to feel sorry for them, just to understand what it’s like to walk a mile in their shoes.

Continue reading “Rare Disease Day 2018” →

5 Years

On By Chris AnselmoIn Daily Musings4 Comments

Five years ago today, my coworker and good friend Carly Hughes passed away from cancer at age 24. The day is forever etched into my memory. Part of me still wants to believe that she got better, came back to work, and resumed her life. It still seems inconceivable, even after all this time, that she is actually gone.

Continue reading “5 Years” →

Happy Father’s Day!

On By Chris AnselmoIn Daily Musings1 Comment

Happy Father’s Day to all the wonderful dads out there! Here is an article I wrote for MDA about my dad, similar to the letter I wrote to my mom for Mother’s Day:

A Letter to Dad on Father’s Day

To be a parent of a child with a rare disease is no easy task. It takes a special kind of parent, and a special kind of love.

Happy Mother’s Day!

On By Chris AnselmoIn Daily Musings4 Comments

Hello everyone,

I just wanted to write a quick note and say Happy Mother’s Day to all you wonderful moms out there!

Continue reading “Happy Mother’s Day!” →