Advocating within a life with MBC, Spring 2023

The last few weeks have been PACKED with appointments on Zoom and in person, some of those appointments were medical but most were in the context of advocacy, working with various projects and starting a new one. My kiddos also finished up the 2022-2023 school year as of last Friday. Still can’t believe I have a rising third grader and a rising 5th grader! While the summer will be lower key for the kiddos, the projects and efforts that I’m involved with won’t slow down much. Balancing life and advocacy and all of the different schedules and needs in our household gets more complicated all the time it seems. I know that I’m getting overwhelmed when I fall behind on the laundry — I won’t share how many loads I folded this morning!

Most of what packed my schedule over the last few weeks has been the advocacy bootcamp that I am co-leading with Lesley Glenn, the founder of Project Life. We met with each of the applicants over zoom and everyone who will be participating in the first class has been notified; we also created a new category for those people who have been trained but haven’t found their niche. I never expect these sorts of things to take this much time, but it was worth all the effort to get to know each of the people who are joining us for the inaugural class. We’ve designed the bootcamp to be really different from other trainings and I’m super excited to see how it unfolds.

Since I was talking with so many people this week about advocacy, it got me thinking. There are so many different ways of advocating, especially as we live with the disease for which we are advocating. One of the things that we will take a deep dive on during the bootcamp is how advocacy looks so different for each person and helping each person to discover their sweet spot. As I spoke with each person and asked them to think about those times that they were in that sweet spot, I started thinking about that for myself.

Having been an advocate in one way or another for most of my life and especially in the career that chose me, shifting into advocacy for Stage IV Metastatic Breast Cancer (MBC) after my de novo diagnosis in 2017 made a whole lot of sense. I was used to working way too many hours during the week (0 stars, do not recommend) prior to my diagnosis and filling the time when the kiddos are in school or otherwise busy became an issue after I wasn’t able to work the way I used to. I didn’t know how much harder it would be to advocate for myself and my own diagnosis, how triggering it would be, how many times I would be moved to tears, how urgent each of the issues would feel, how often I see and feel dear friends who have died as I talk with healthy people. I also didn’t anticipate that I would find so much meaning and purpose.

Here’s a webinar that I participated in all about how advocacy and advocating for a terminal diagnosis is very different from those health issues that are chronic …

REPLAY: How to Advocate for a Terminal Condition Panel

Here’s some of what I’ve learned about myself from personality testing and my own experiences as a leader and a follower:

• I’m a responsible organizer; creating and enforcing order within systems and institutions is really really important to me. This works itself out in what I volunteer to do and also the issues that I spot and work to address within the health care organizations I’m exposed to. Having worked in and led large and small organizations, I can often spot issues between siloed departments and offer suggestions.
• I have a pretty healthy sense of who I am and where I fit — I’ve learned to tell people at the beginning of any endeavor what they can expect from me as a sort of warning because I do tend to be in the same situation over and over where I see an issue and bring it up until its fixed. Not every organization wants this sort of feedback and I am working on being more tactful when I offer feedback.
• When things are difficult, my first instinct is to double down and work harder. This sense of perseverance and focus can be a super power and it’s also sometimes harder for me to see when a situation or organization isn’t a good fit for me. I’m learning more and more when I need to stop and walk away to protect my own energy.
• My communication style is forthright, very honest and direct. I’m often baffled when the reactions from others aren’t what I expect. What so many people don’t understand is that every time I offer feedback or information, it is with the deepest desire to be helpful and useful. I’m learning more about packaging and holding my tongue.
• I rarely do anything halfway and the passion and intensity I bring to every situation can be misunderstood as anger. While there is plenty of anger simmering beneath the surface when it comes to having a terminal diagnosis, I have learned to channel that energy/emotion into what needs to be done, but that’s not always comfortable for others. Being misunderstood in this way has been something I’ve encountered a lot and I’m always surprised.
• Because Justice is such an important thing for me, I will often knowingly step into the line of fire when I perceive that someone else is in danger or being mistreated. I’ve often been in the situation where I draw vitriol away from someone else by absorbing it myself. Until my MBC diagnosis, I didn’t really understand how much doing this depletes my energy and I’ve had to temper this tendency a bit. It’s still my instinct, though, and I see this show up a lot in my parenting as well as advocacy. I have a keen sense of white privilege being married to a black man and having mixed children.
• Having a core value of justice and things being done “right,” means that while rules are super important to me (it’s no accident that I became a lawyer!), I’m also pretty comfortable with looking for ways to work within/around the rules to get the desired result. I realize that my tendency to remind others of the rules rather often means that I can be in the unfortunate position of telling others that something can’t be done and I’m learning to offer solutions in addition to identifying issues.
• Some labels from personality typing that resonate with me: Challenger (also energetic challenger), Leader, Protector, Guardian, Defender of Justice.

I read somewhere a little while ago about the idea of congruence, which has showed up for me in a variety of ways, both before my diagnosis and after. The idea from what I was reading is that congruence is when you are in that sweet spot, when your genuine gifts and talent and skill set fits what you are doing. I’ve seen this in my own life and in others, both the positives/balconies and negatives/basements of this concept. While I have sought out some roles that might seem like they fall outside of my sweet spot, each has stretched me to seek out those skills I need to develop.

Whatever the label, fitting in a cause or advocacy into “real” life can be challenging. When said cause is something that you live with every single day, advocacy becomes entrenched in the rest of life. And that’s an example that I’m happy to set for my boys.

Ending with a gratuitous picture we took on the last day of school — their personalities are so evident in all they do!