It took me some time after my Stage IV Metastatic Breast Cancer (MBC) de novo diagnosis in 2017 to figure out how open I wanted to be about my diagnosis and living with cancer. That was partially because I didn’t know what I was going to do with my law firm and my clients. I’d always been super careful about how much personal information I shared because of my professional responsibilities as a lawyer and advocate and when the bottom fell out of my life, it took some time to figure out what to do.
Once I knew I wanted part of my advocacy to be living openly with MBC, that’s been a huge part of my life ever since. I regularly share a lot of information online and otherwise about the highs and lows of living with terminal cancer. One of the responses I get all the time is some variation on the “you are so strong” comment. To be clear, I don’t usually get this response from people in the MBC community, it’s from the healthy people I’m connected to who usually have this reaction.
At first, when I got this response, it felt good. It felt empowering. I thought … “You are damn right, I am strong,” patted myself on the back and kept going. After a while, though, I started looking a little deeper. Yes, I know, I’m a little slow on the uptake sometimes. I often struggle to access and name my emotions.
You see, I don’t always feel strong. I often feel as if I’m made of glass, that I’m already cracked and one more thing will simply shatter the entire pane and my existence with it. Some days, I don’t feel equipped to get out of bed, let alone get dressed and take a shower and deal with the constant issues involved with lifelong cancer care, ridiculous insurance companies, often insensitive family and friends, the demands of two little boys, a husband, and just everything else that makes up my life.
That validation I used to feel when someone says I’m so strong just doesn’t cut it any longer while living with terminal cancer. When someone said that in the last few years, I usually respond with a variation of “I’m just dealing the cards I was dealt,” or “I just keep putting one foot in front of the other,” or “you never know what you can handle until you have to handle a lot.”
And yet, I don’t know that none of those responses are really the whole story either, not that I owe the whole story to any person who comments on a post of mine. What is strength, anyway? What does that person commenting about how strong I am or how strong they perceive me to be, really mean? It occurs to me that the person commenting is really saying, “I couldn’t do that” or even “How do you do that?”
After three (3) years of this living with MBC experience, I think I’ve discovered a few things about myself and about how I’ve taken the hand I was dealt and made something of it.
First of all, I’ve realized that learning I have MBC broke me. It broke my sense of self. It broke how I viewed my body. It broke how I viewed the world. It broke how I view God. It broke my view of love and caring. It broke my view of fear and resilience. It broke my sense of justice and fairness. It broke my relationships and it decimated the career I’d spent nearly twenty (20) years building. Acknowledging and facing that has taken me a lot of time, work, and reflection.
In the beginning, I thought being broken meant I was weak, meant that I had failed somehow. I now understand that to look closely at the experience and my brokenness is how I move forward. I now understand that being broken doesn’t mean that I’m no longer whole. I now understand that to be broken just is. I now understand that we often have to be broken to heal.
To me, being broken means I have the opportunity to put my life back together in a different way. To rebuild from the ashes of a life I thought I wanted, into a life of meaning, a life of purpose, a life I actually want. Being broken is an opportunity to make something entirely new.
Secondly, I am learning that to be vulnerable is a strength.
For most of my 41 years on this earth, I have projected a lack of vulnerability. I have worked hard to project a persona of strength, fearlessness and near invincibility. The few people I let into my vulnerability were curated extremely carefully and my sensitivity to being betrayed was so finely calibrated that it didn’t take much for someone to be booted from that circle.
What I didn’t see before cancer was that the energy needed to continue to project that persona and hide my vulnerability was pretty astronomical. After cancer, it just wasn’t possible to utilize that much energy to hide.
So, I decided not to hide any longer.
It has taken a lot for me to be vulnerable to the people around me and to the larger public through my blog and speaking opportunities. I haven’t always done that well. I’m still learning and I often fall back into old patterns, old ways of looking at the world, old ways of trying to protect my tender heart. And yet, when I’ve opened up my heart to others, when I’ve been able to adequately shine a light on what it truly means to be living life to the fullest while dying, that’s when the magic has happened.
I am learning, day after day, that the antidote to anxiety, to struggle, to depression, to the toll of living with a terminal disease, is human connection. I cherish the connections I’ve made in the MBC community (and elsewhere) have been vital to being able to get up every morning and facing yet another day of living while dying.
Third, I am learning to truly accept myself for who I am rather than trying to be something or someone else. It feels rather odd to say/type that. I am 41 years old, I have children, and sometimes I feel as though I should have myself figured out, at least. And yet, I find that I am always learning more.
A friend in the MBC community, Tori Geib, introduced me to the Enneagram personality typing. I would definitely recommend it to anyone who wants to understand the why behind what they do. You see, I’d always been more consumed with the what and adjusting what I did to the expectations of others, not usually delving deeper into why.
Understanding why isn’t about making excuses or behaving badly just because that’s one’s “type,” it’s about understanding what growth looks like and why my gut reactions are what they are. It’s about embracing the basis and the motivations behind what’s going on and using those foundational elements of who I am to drive my energy into something more productive. I’m learning and I’m thankful to be learning.
For anyone who is interested, I’m happy to share that I’m solidly an Enneagram Type 8w7. The information in this way of thinking helps me to identify areas where I need to grow and watch for the behaviors that mean I’m sliding into unhealthy reactions. This focus on growth and understanding why means that I’m kind to myself, I identify what I need to work on, and then I can use what I’m learning to move towards a more healthy way of being and behaving.
And so, I’ve come full circle.
When people comment on how I’m strong, I’m able to see that as the truth. I am strong, pretty damn strong. I’ve been broken and I’m still here. I’ve had bad days, weeks, months, years and I’m still learning and growing. I’ve made mistakes and I’ve hurt others and I can forgive myself, seek forgiveness from others and move forward. I’ve been dealt a hand that is not easy to handle and yet I’ve found a way to be available and helpful to others, to advocate and to make a difference in the time that I have. I am committed to make the most of the time I have and not putting off what is important to me, to my family and to my community.
This living while dying is hard stuff. It’s not easy and no one is truly successful going it alone. To be strong and to face what it means to live with a terminal diagnosis with any amount of “success” is simply not a solitary endeavor. We are #StrongerTogether and, as my dear friend, Emily Garnett, who we lost to MBC in March of 2020, the MBC community is the worst club with the best people. We stand on the shoulders of others who have come before us as those who come afterwards stand on ours.
I’m thankful to be part of this legacy of strength and to play my part in empowering those who come after my time on earth is done.