Living Your Dreams When Living with Rare Disease: How Chris Anselmo Learned to Follow His Heart

By Chris Anselmo

After my diagnosis of limb-girdle muscular dystrophy type 2B at age 21, I opted for the safe path in my career. Faced with increasing muscle weakness and ever-increasing uncertainty, I chose jobs with steady income, benefits, and predictability.

Although I had wonderful coworkers and was happy to be employed, I always felt like there was something missing in my life. In time, I realized that I wasn’t following my heart.

This internal tug-of-war is best illustrated by a chance encounter a few weeks back. While cleaning the shelf next to my desk, I came across one of my old notebooks.

The black leather cover was dusty and faded, and the pages were beginning to yellow. Despite the weathered appearance, curiosity got the best of me. I had to know what was inside.

This notebook was from 2018, which was a transition year for me. A few months prior, at the end of 2017, I burned out of my job and didn’t know what came next in my life. It was a time when I questioned my purpose and lost sleep over who I was supposed to become.

At the time, I took several part-time jobs to make ends meet until I found a full-time role I was happy with. Most of the pages of the notebook were shorthand notes from various work calls.

But the back of the notebook served a more existential purpose; it was a staging area for the next phase of my career.

On multiple pages, I wrote down the same question over and over:

“What do I want?”

The pages depicted an internal struggle, a gradual process of elimination as I honed in on what I wanted to do.

“I want to work at a nonprofit.”

“I want to work at a healthcare company.”

“A biotech.”

“A travel company.”

“The entertainment industry.”

None of the answers hit the mark.

On the last page, I asked the question one final time. “What do I want?”

This time, I didn’t cross out the answer:

I want to be a writer.

Today, it seems obvious, but at the time, I didn’t think writing was a viable career path due to a combination of fear, self-doubt, and financial expectations.

But I didn’t cross it out, because I knew deep down, it was the right answer.

My heart’s desire.

It’s satisfying to think about where I am today, living the writing life, even if it’s not the most lucrative path. There’s something about doing what I love that brings joy and contentment to the deepest reaches of my soul.

It’s a struggle, yes, but it’s a beautiful struggle.

And best of all, I never have to ask, “What if I became a writer?”

What’s stopping you?

Of course, there’s another way to look at this: I knew what I wanted in 2018, but I didn’t take writing seriously until I began Hello, Adversity in 2023.

Generally speaking, I’m happy with how my career unfolded, and the job I eventually got in 2018 introduced many, many wonderful people into my life, people I’m still friends with today. But I do regret not writing more on the side. I knew what I wanted in 2018 but failed to act.

Which brings me to today’s takeaway: Don’t wait to follow your heart.

Life is short. If there’s something you want to do, whether it’s to start a new career, travel the world, ask out that person you’ve had a crush on forever, take up a new hobby, etc., go for it.

Or at least give it serious consideration.

Know Thyself

If you don’t know what your heart wants, it’s worth giving it some thought. Because, without exaggeration, this could be the most important brainstorm of your life.

Here are a few questions you can ask to kickstart the exploration process:

What gives me joy?
What activities do I gravitate towards in my free time?
If I was free to do anything I wanted, what would be the first thing I would do?
Similarly, if money wasn’t an issue, what would I be doing?
Who (or what) inspires me?
Who do I enjoy spending time with, or would want to spend more time with?
If I was on my deathbed, what would I regret not having done?

These are some of the questions that have helped me over the years, but it’s by no means a comprehensive list. (Here are a few more good ones you can ask.) Hopefully, they get you thinking about what your heart desires and can steer you in the right direction.

At a minimum, you’ll know yourself much better than you did before.

Taking action

The next step is to figure out the next steps.

Some of what your heart desires, admittedly, might not be possible to achieve. (i.e., perfect health, romantic matters, mistakes you can’t undo, etc.)

But if what you truly want — and what your heart is steering you towards — is something that can be achieved, there’s no reason you can’t start heading in that direction today.

Following your heart will involve risk, no question, but don’t be intimidated. It may require having hard conversations, making sacrifices, and financial uncertainty, but that doesn’t mean it’s not worth it in the end.

In fact, the riskier decision might be not taking action.

If it seems scary, remember that you don’t have to upend your entire life all at once, today. You can walk slowly in the direction of your dreams; you don’t have to sprint at full speed. It’s the same principle with relationships.

Small bits of progress build up over time.

There’s no time like today

There’s nothing quite like moving towards your dreams. Almost immediately, you will feel more energized and less anxious as you begin to live in alignment with what your heart desires.

And yet, so many of us ignore this inner nudge.

So often, we put off pursuing what we want, thinking there will be time later. But time has a maddening way of slipping through our fingers, and before we know it, the opportunity passes.

We spend so much of our lives going with the flow rather than intentionally designing the life we want. We go through the motions, exhausting ourselves, living someone else’s dream, instead of pursuing the activities and relationships that would fill us with joy.

It doesn’t have to be this way.

If you’re going through a tough time, or you’re stressed out questioning what comes next, listen to your heart.

It may not have all the details worked out yet, but it won’t lead you astray.