Hi friends,
Whether you call yourself a caregiver, special needs parent, medical mom, disability dad, human being, etc, we’re glad to have you here.
Welcome to the first ever volume of the Caregiver Coffee Date newsletter by the Caffeinated Caregivers. We’ll be talking about the good, the hard, the humor, and the philosophical aspects of being a caregiver of a medically complex or disabled child.
I promise that in the future, these won’t always be so introspective, but I have to share something with you, my fellow caregivers, that I haven’t been able to get out of my head since I heard it.
Earlier this week, I listened to a podcast about how AI is reshaping the internet, which on it’s face doesn’t have anything to do with disability or caregiving or medicine or anything like that, but nonetheless, the guest, Nilay Patel, on that particular podcast said something that I think is still true and relevant to every one of us.
He said, “It is so hard to make someone else feel anything other than pain.” (Nilay Patel on The Ezra Klein show)
When I first heard that, I had the same reaction as the podcast host: YIKES.
Even for me, as a caregiver who revels in dark humor, that was a little grim. But then Nilay went on to explain that this is exactly why he’s so inspired by individuals and communities who are able to do something other than hurt each other –communities that can comfort each other and make each other laugh and feel less alone in the world.
Because a short cutting comment is cheap and easy. A rude interaction requires less emotional input than being vulnerable. Dismissing and downplaying the emotional needs of others is easier than sitting in the discomfort with them. In our position as caregivers, it’s easy for doctors, family, friends, peers, etc to hurt us as caregivers –and as humans– even when they don’t intend to.
But healing is hard. Comforting someone requires openness and the capacity to potentially hold someone else’s discomfort right along with them. Reaching your hand out, not knowing if the recipient will accept it or slap it away is scary. And that’s what makes it worth doing.
While the interview on AI with Nilay was terrifying in some ways, it was also deeply affirming in others. Because the point Nilay was making is that inspiration, human connection, our innate capacity to hold and see each other– that’s all uniquely human. That can’t be replicated.
And that’s the whole concept behind Caffeinated Caregivers: to create a space where we, as caregivers of disabled and medically complex children, can support each other through research, information, humor, and most importantly, genuine human connection.
We’ve all been hurt, because it’s easy to hurt, and it’s very, very easy to be hurt in our position where so few understand or even see the caregiving journey we’re on. It’s easy to put up our guard and shut others out and ward off potential discomfort with sharp words and negative assumptions, and honestly, we don’t blame you if that’s your defense mechanism. We all have to make it through this sharp and difficult world.
But there’s beauty in embracing our humanity, holding onto our softness, and reaching out our hands to each other. At the end of the day, as caregivers, our best friends and our staunchest allies will be each other.
It’s hard to heal and comfort each other, but we’re caregivers. We already do hard things every single day, as we support little lives that are dependent on us to survive and thrive. And we make it easier by supporting and holding the weight of this life together.
We see you, friends. Until next time.
