As many of you might have seen on insta, last summer (2019), my little brother, Thomas, spent his college break living with us in New Orleans.

He moved in during one of the stormier seasons of my health journey. I was recovering from my first bladder operation, we had just moved into a new place and I was gearing up to travel to Los Angeles for two weeks of intensive Lyme treatment. We all were unsure about what the dynamics of the next few months would look like, but certain that as a team, we would make it through to the other side.

Throughout the summer, Thomas was an anchor. He brought a steadfast loving, patient energy into our home and assimilated smoothly into the rhythm and pattern of our space — and the way that the management of my health issues impact our home environment.

His words in this guest blog absolutely filled my heart. I hope that you enjoy reading them too!

---

Arriving in New Orleans in late May, 2019, after my spring semester at college in Massachusetts had finished up. I didn’t know what to expect, and I wasn’t sure what things would look like once I got down here. All I really knew was that for the last several months you had seemed especially tired, spent, and overwhelmed with the progression of your health, and that I wanted desperately to help in some small way.

With that being said, coming down to New Orleans to “help” you was also an excuse I used to help myself feel a sense of direction and purpose about the way I was going to spend my summer. I needed something to do before I went back to finish my last semester of college and was feeling a bit rudderless. In some ways, it was a selfish act of altruism.

There are a couple of things that encapsulate the experience I’ve had living with you and Will and Finn these last few months.

First and foremost is the culture of food that you have created in your home. Food matters, (duh) but the amount of time and effort spent shopping, prepping, cooking, eating, and cleaning here is incomparable to any living experience I’ve had. And man, oh man, what a big difference it makes!

I realized how easy it is to put intention, energy, and care into what we put into our bodies and what an enormous impact it has on my state of mind and perception of my self. Eat good, feel good, it’s as simple as that. I certainly didn’t know that just about every vegetable could be delicious with just a little slicing, dicing, olive oil, salt and pepper, and a baking tray in a 400 degree oven. It seems to me that learning how to engage with and support the dietary culture of your lifestyle is one of the easiest and most enjoyable ways that I can show up and help out on a daily basis.

The necessity of bodily movement is also something I’ve reflected on and learned about in a new way while living in your home. Despite having near daily symptoms in some regard that cause your body to feel fatigued, beleaguered, and in pain; I don’t think a single day went by over the course of this entire sweltering New Orlean summer in which you didn’t make it out of the house at least once, for a morning stroll with Finn or a sunset jaunt around the neighborhood. Even if it was just for five minutes, it was clear that finding a way to experience the world outside of the sanctuary of our comfortable abode brought a deep sense of purpose and fulfillment not just for you, but for all of us.

Procuring, preparing, and consuming fresh healthy food, and engaging with the world through movement and exercise may not be the first things someone would associate with the lifestyle of somebody dealing with chronic illness.

However, I found that many of my assumptions about living with chronic illness were wrong. Regardless of how I showed up to support you from afar in the 6 years of your chronic illness, I could never have fully realized what life truly looks like without having experienced it firsthand by living side by side over the course of three months.

There were countless examples of how your bravery and courage propelled you to do things that I would have assumed were unimaginable, even impossible, given your current health.

Similarly, I was floored repeatedly by the vicious cycle of head pain, digestive issues, and various symptoms derived from lyme disease. Through all of these highs and lows, amidst the never-ending turbulence that navigating the world in your body brings, the most constant element was the gratitude that you continually found a way to connect with. 

Spending a summer living with my big sister taught me about gratitude for life, for the gifts of health and body, and the gifts of food and family. 

---

Annnnnnnnnnnnnd *cue the tears*. Thank you so much, Thomas. You are one in a million and I am eternally grateful that you’re my brother. I’m even more grateful that this special summer in Nola convinced you to come back as a post-grad so that we can keep the party going The memories we continue to bank in the #memzjar and this opportunity to grow and move through life together, whether near or far, is a gift I will never take for granted.

I hope that this was insightful for others and can help shine a light on the many different forms of #copiloting and supporting a loved one through a challenging health season.

It can be vulnerable and scary to let others, even those we love very much, “in” to see the most the painful and difficult aspects of managing day to day life with chronic illness.

But to do so, and to be met with unconditional love and an open, willing attitude to learn new methods of support and communication; makes a world of difference. Thank you for being one of those people, Thomas. I love you so much! ♥️