My Favorite Links from a Long, Cold Winter
On grief, belonging, kindness, and the courage to ask for what you want
March is my favorite month of the year. The NCAA men’s and women’s basketball tournaments start in two weeks. Baseball spring training is underway. And most importantly, spring is on the horizon. (Although as a New Englander, I know winter won’t go down without a fight.)
As I type this, the sun is shining bright, the snow is melting, and I’m feeling good. It might even hit 60 on Friday.
In the spirit of (almost) spring cleaning, today I’d like to share a few links I’ve saved up over the last few weeks:
Podcasts
Last month, I had the opportunity to appear on Leanne Watson’s podcast, You, Me & Muscular Dystrophy. In our conversation, we discussed my journey with limb-girdle muscular dystrophy 2B, how I became a writer, the importance of asking for help when you’re struggling, and several other topics.
I’ve known Leanne for several years (she also has LGMD), but our correspondence has always been over email. It was nice to finally talk to her on video!
I really enjoyed this discussion between Essentialism author Greg McKeown and Jenny Wood, speaker, former Google executive, and author of the book, Wild Courage.
There was so much useful information in this interview, but I resonated most with how Jenny challenges listeners to rethink their reluctance to ask for what they want.
As she puts it: “What closes the gap between what you want and what you get is wild courage.” This means reclaiming words such as weird, selfish, shameless, manipulative, and others that keep us from taking risks and speaking up.
For example, selfish has negative connotations, but as she says in her book, it can also mean “…fighting for yourself just as enthusiastically as you fight for your friends and colleagues.”
This interview spoke to me. Many times, I fail to ask for what I want because I’m afraid of coming off as sales-y, or self-promotional, or transactional. (Or selfish.) But this interview helped me see that, in fearing rejection and judgment, I’m actually holding myself back from building the life I want and making the impact I hope to make.
I just started Wild Courage and am excited to read it. If you’ve read it, what did you think?
Articles
Recently, I’ve been reworking the chapter on grief in my book and have sought inspiration from other writers to see how they’ve approached the subject.
This piece by Sam DeCosmo, who lives with a rare disease and chronic pain, articulates well the grief that can come from no longer having a healthy body.
Like Sam, I had dreams that got derailed after my diagnosis. And similar to her experience, I didn’t recognize for many years that I was grieving the loss of the person I thought I’d be.
That said, this kind of grief isn’t about being broken, or less-than, or any of the other condescending assumptions that come with having a chronic illness. You can still grieve what might have been, while also embracing what is, and can still be.
As Sam puts it:
“I’m learning to accept that I may always be grieving the life I had once dreamed of for myself before I became ill. But I’m also learning that I can grieve and create a meaningful, joyful life at the same time.”
I feel the same way, and it’s this joy I try to focus on each day.
What I enjoy about Carly Valancy’s writing is how passionate she is about meeting new people and pushing past the discomfort of cold outreach.
In this piece, Carly shares the art of writing an “unignorable” email that stands out from the everyday slop people receive in their inboxes.
An unignorable email takes a little up-front effort to write, but this legwork can dramatically increase the chances of getting a response. Even if nine out of ten people say “no” or don’t respond, all it takes is one “yes” to change your life. (Something I need to keep reminding myself!)
This article pairs perfectly with the Jenny Wood podcast I mentioned earlier.
In this essay, writer Kevin Kelly shares his experience traveling the world and how numerous strangers gave him shelter, meals, and gifts without expecting anything in return.
Through these acts, he came to appreciate the life-changing power of being a “kindee” — of accepting kindness with gratitude and openness.
We understand the importance of kindness, but we often think about it in terms of what we do for others. (Which is important!) But Kevin emphasizes that receiving kindness is a skill worth cultivating.
When we ask, “How will the miracle happen today?”, this allows us to participate in the wonderful mystery of life.
He says:
“When the miracle flows, it flows both ways. When an offered gift is accepted, then the threads of love are knotted, snaring both the stranger who is kind, and the stranger who is kinded. Every time a gift is tossed it lands differently – but knowing that it will arrive in some colorful, unexpected way is one of the certainties of life.”
Even though I know how important it is to ask for help, I still struggle with it, mainly because I fear being a burden. This piece was a helpful reframe. People want to help me, and I should let them.
Jay Clouse is the founder of Creator Science, a company and platform that teaches content creators how to build sustainable businesses.
In the last few months, Jay has begun writing personal essays, which I’ve found insightful.
In this piece, Jay discusses how, despite running successful clubs and communities, he still feels like an “inbetweener” who doesn’t quite fit into any one group. He reflects on how a decade of professional striving came at the cost of deep friendships — and how this has motivated him to turn his attention inward. By exploring how to become a better person and build more meaningful connections with the people around him, he hopes to shed this label for good.
I understand this feeling of being an inbetweener quite well. In high school, I had friends, but never felt like I belonged to any one group. In college, it was the same thing — I had a social circle, but still felt like an outsider. And even now, although I have many great friends, I’m mostly homebound.
Although I’m not as much of an inbetweener as I used to be, I think growing up this way helped me relate to others who feel alone. Because I’ve struggled to belong, I’m motivated to help others who feel isolated by adversity.
Rare Disease Day
Last Saturday, February 28th, was Rare Disease Day, an annual observance to raise awareness for the thousands of rare diseases that exist, highlight issues important to the community (drug development, healthcare access, etc.), and celebrate the millions of individuals living with these conditions around the world.
It’s estimated that 1 in 10 people live with a rare disease — and that doesn’t include the family members who support these individuals and deserve their own appreciation, too.
Here’s a piece I wrote a couple years ago if you’d like to learn more about my LGMD story.
“How will the miracle happen today” was so good! Thank you for the rec!