Remembering Elizabeth Wilson (a/k/a Libby Joan)

On August 31, 2023 in the afternoon, Elizabeth Joan Wilson (also known as Libby Joan online) took her last breaths on this earth. She was 39 and her life had barely begun. The picture I’ve featured on this post was created by an organization in Canada called Dense Breasts Canada, which Libby worked with. Stage IV Metastatic Breast Cancer (MBC) took her life, as it takes the lives of so many of us every single year. What set Libby apart from many of us who are terminal was her willingness to be dark, blunt, and very very descriptive of the process. This didn’t resonate with everyone and she wasn’t afraid to call out those people who pushed back.

Libby was so very brave.

Libby was diagnosed with early stage breast cancer the first time soon after giving birth to her daughter. She received treatment and later talked about how she wasn’t educated enough on the risks of the cancer returning. About a year after that first diagnosis, she was told that breast cancer had returned and had spread beyond her breast to her bones. It later spread to her organs, wreaking havoc wherever the cancer took up residence. She lived beyond the statistical median life expectancy but certainly did not have enough time. She often despaired at how she would leave her young daughter motherless before they ever really got to know one another.

Libby pulled back the curtain on this experience of living while dying in a way that many of us don’t. She was extremely vulnerable, sometimes excruciatingly so. What most of us usually keep within the private support groups, Libby shared publicly, openly and often. Her efforts were seen and appreciate by so many, as evidenced by the outpouring of love from literally millions of people at the news of her death.

I’ve included below a piece written by my friend, Rod Ritchie, who interviewed Libby. He shared his writing online:

Click to access LibbyMBCnew.pdf

Lest you think Libby always experienced love and admiration from her many followers, I would be remiss if I didn’t mention how Libby suffered at the hands of a group of people living with MBC who decided she was faking her diagnosis, the very same diagnosis that ended her life. There were even posts online recently joking about how Libby would use her entry into hospice to enrich herself. It’s been a few years since the bullying began and lately I’ve observed how those same people are attempting to rewrite history, to dupe others into believing that their campaign of hate was something else, that they didn’t force many of us to make hard, difficult choices.

And it breaks my heart.

Libby wasn’t perfect, none of us are. She made choices and communicated her truth in a way that was often misunderstood. As someone who is also often misunderstood, I felt her pain, deeply. Around the time that the conflicts ignited, I wrote a post called Hurt People Hurt People, which was a follow up on a post I wrote about two people who were actually found to be faking MBC, called When People Pretend.

Every single one of us who is living with MBC has been wounded deeply. We are wounded regularly by our medical team as they slice and poke and burn and poison our bodies. We are wounded psychologically and emotionally and mentally as we struggle to stay alive and to assimilate the new reality, that our bodies, our very cells, are actively trying to murder us. We are wounded by being ignored and sidelined and given up on by so many. We are wounded further by the complex medical systems and the myriad of players who use our suffering to turn a profit. We are wounded over and over when we have to miss out, to not be able to participate, and when we have to make hard choices to protect our immunocompromised bodies.

After all this hurt and wounding, it’s pretty freaking remarkable that we aren’t all curled up in the corner, weeping. Ok, I confess, I do that sometimes but not all the time.

Libby looked up from her own suffering and wanted to help. She wanted to make the world and cancer treatment and so many things better. Libby was vulnerable and shared openly to shine a spotlight on so many things. Her experiences were different from others, partly because she lived and died in Canada, whose system is very different from the US. Her experiences were different because she was diagnosed at a young age and had a small child to also care for. She used those differences to capture the attention of those in power.

There’s a place for advocacy, for urging others to do better, for correcting misconceptions and and standing up for ourselves and others. In this moment, in the wake of this huge loss, as so many others, I would urge each of us to take pause, take note, and extend kindness. This isn’t the time to ignite old conflicts or set the record straight — we are each only responsible for ourselves and our own behavior. Libby’s life and her legacy are more than one thing and I will miss her greatly.