Intentionality, Privilege, and Choice

It’s so hard to plan the day…

My Friends-

I hope everyone is doing well and enjoying the best of summer with family and friends. Over here, there has been baking, antiquing, swimming, reading, and a little bit too much ice cream-eating! Before I dive into the meat of this week’s message, I wanted to let you know that the Grief is Love Retreat is filling up quickly. As a reminder, this is for all forms of grief—divorce, chronic illness, estrangement, infertility, death and dying-–all of it. If you have questions for us, just respond to this Substack and it will reach our team. We would love to have you. Additionally, we have launched a donation link for folks who want to support folks who want to attend, have been admitted, and need help to cover the costs. If you are interested in contributing, we would be so thankful!

On to the meat! September will mark two years of Holding Both (ah!). I cannot believe it. I love this space but as of today we are launching a summer sabbatical for our team, so the Substack will be on pause till late August. When we return it will likely be with a new roadmap for how we build and communicate with this community. If there is anything that you really love about this space and want to make sure we keep, please comment below and we will take your feedback into account as we figure out how to move forward.

I have been ruminating on something that has always been a struggle of mine: how to spend my time. As much as I am an abundance girl, I tend to take a scarcity mindset when it comes to time. When you watch someone you love die at a young age, it changes you. I have had a ticking timebomb, a “life clock” of sorts, in the back of my mind since I was a senior in college. Before my mother even received a breast cancer diagnosis, I realized one day while sitting at my desk in my dorm in Cabot House at Harvard that she wouldn’t live long, or at least not as long as my grandparents. I knew that at some point, her MS would wear her down, that the disease would win and we would lose. It immediately felt so clear and true and heartbreaking. Six months later, I found myself in an oncologist’s office where I learned my mom had an 8 centimeter mass in her left breast. “Unfortunately,” she didn’t have bone cancer, but instead stage 4 breast cancer. She was going to die even sooner than I’d originally imagined.

Long before either of her illnesses, I’d always been a doer, a problem solver, an advocate, a leader, and a social butterfly. I was a girl who wanted to do, see, and experience everything all the time while simultaneously solving problems for myself and others along the way. I’d written about homelessness, racism, and the AIDS crisis in elementary school, and I wanted to star in every play, kiss (at least) every other boy, and throw all the parties. So that day in the oncologist’s office, when the understanding arrived that life could be unimaginably short, it was as if who I was in my core was suddenly amplified times a thousand.

I have struggled ever since to balance the needs that come with being human—water, food, doctors appointments, sleep, and more—with my deep desire to both enjoy and positively impact the world. Today, I feel and see and want to fix so many social challenges: racial equity, LGBTQ+ discrimination, educational and economic inequality, our broken political system, and of course long COVID. At the same time, I also want to get my body strong so that I can beat my child in a foot race without bearing any consequences. I want to go on dates with Matt, and dates with my friends. I want to return to Paris. I want to read books, books, and more books while listening to birds. I want to do it all, but I am still not exactly healthy. So what to do?

I don’t think this tension I am currently living with is unique or special. It is heightened because of my long COVID limitations, but I believe it is a deeply human struggle to want to do and see and experience more than what any day can realistically accommodate. It is a fact of life for most of us. I have come to believe that living a good life comes down to one of the core themes in Waiting for Dawn: intention.

None of us can do it all, even those with perfectly healthy bodies, so we have to make choices. We often consider them tradeoffs—join the client call or go watch the kid play soccer? Work out or take a nap? We might instead consider our intentions and values—these aren’t “tradeoffs” they are aligned choices that we are privileged to make. I mean, isn’t it a blessing to have both a spouse you genuinely enjoy and friends you want to hang with as well? But because I have a body that requires a lot of care, making these simple choices is very frustrating.

Last week alone I had four medical appointments and spent about three hours trying to find a neurologist who could provide me with a second opinion on my care before 2027. But I also know from learning to live within limits that having choice at all is a privilege. It wasn’t all that long ago when the choices weren’t “do I go to the vintage store (more manageable) or the vintage festival (more walking)?” Instead they were, “can I walk comfortably around my house today?” “Can I stand up and take a shower?” “Can I drive myself to the doctors or do I need a friend to take me?” “Can I even call and make my own medical appointments?” A lot of times the answer was simply no.

I am torn between a desire to improve the world, a desire to enjoy the world, and the often boring and tiresome needs of a recovering body. In choosing intentionality, we can do more than simply “hold both,” we can do it all, just not today. When I am trying to figure out where and how to focus my still-limited time and energy, I go quiet. I breathe and I think carefully about what I need today. Sometimes it’s a good cry, sometimes it’s a doctor’s appointment, sometimes it’s a new hobby or fun with a friend, but whatever it is, I do my best to access it without feelings of guilt or pressure. I hope that as you think about how to best enjoy this summer season, you will let go of the language of tradeoffs and think in terms of choice and privilege and intentionality as much as possible. And if you need ideas for summer joy, you know we’ve got you.

With love, gratitude, and intention,

Marisa

SUMMER JOY LIST!

• Nana Joe’s Granola: This is my new favorite obsession. Due to one of my medications I have to eat A LOT and this granola has super fun flavors, is low-ish in sugar, and on average higher in fiber and protein than most other snack options. God, I sound so old. My current favorites are the Waffle Cone Granola and the Stoke Granola Bars.

• Fishwife Tinned Fish: I have to consume a wild amount of protein as a part of my recovery, and for a long time, tinned fish was off the table. It had too much histamine for my sensitive system, but it is back in the game, and my new fave is the Fishwife Spicy Tuna. Give it a try and thank me later.

• Fiction: Books are a big part of my summer plan. If you saw my TBR stack, you might think I am still trying to compete in Book-It! I want to give a special shoutout to my new friend and fellow Legacy Lit author, Clarence Haynes. Clarence is one of those people you encounter and immediately bask in the glow of their positive energy. His latest book, A Seattle Times mystery pick of the summer, The Broken Hearts Agency is a gripping urban fantasy/genre blend novel based in the nation’s capital. Linda Villanueva, a tough private investigator who can mystically touch the mind of troubled souls, must also face a supernatural force threatening DC all while grappling with her own heartache. We are giving a copy away to someone who comments on today’s message. I am sure you will enjoy it!

• Non-Fiction: Awareness! I loved this book by Anthony De Mello. It gave me a lot to think about and I highly recommend checking it out if you’re looking for something to help you be more present and uncover more joy in your daily life. And, if you haven’t yet ordered Waiting for Dawn, what are you doing? Get to it, please.

• Get a Hobby: I MADE A MUG! All by myself! I realize I sound like a toddler here, but I am quite proud. I decided when I was too sick to do anything at all that I would commit to the pursuit of hobbies when I felt stronger. There is something about pottery that feels very natural to me. I am still not very good, but I will complete 4-5 lessons by the end of the summer and I am getting better and enjoying it. I am sharing to encourage others to consider finding something that brings you joy and is completely divorced from responsibility and productivity!

• This Song: I may be very behind on this one, but Bennett and I jam out to Paris Paloma on the way to camp in the mornings and I wanted to share her with you all!

Enjoy!