The impetus for this post came from a rather difficult conversation in one of my breast cancer support groups recently. I’m not referring to any one particular person in this post and some of it isn’t even about me or my own experiences. This post is purely my own musings. At the same time, I’ve not met one person dealing with a difficult situation in their lives who have not shared how someone in their life they expected to support them, did not for one reason or another. I say this because this experience is not limited to breast cancer or a terminal diagnosis.
My mom was diagnosed with stage 0/1 breast cancer while I was a young professional, relatively newly divorced from my first husband and still figuring out what it meant to be a lawyer. In that experience, as I was trying to figure out what it meant to be a daughter to a breast cancer haver and then survivor, my role was mostly focused on the legal and financial issues. I fielded the frantic calls from my dad when the financial people tried to get him to write a $40,000.00 check so my mom could get chemo as she was getting settled into the chemo chair. I threatened her insurance company with whatever I could think of to get them to honor their contract when they inappropriately and illegally tried to deny her life saving treatment. Long story short, they paid her bills but only if I promised not to call them anymore. I happily agreed and abandoned the multiple lawsuits I was planning.
I didn’t know how to handle my mom’s illness and I more fully get that now.
Once my mom moved from patient with cancer to survivor, the emotional fallout and the trauma to her and the family became more pronounced. In hindsight, I mostly coped by burying myself in work and not dealing with the emotional aftermath. The one thing I did do was buy just about every pink soaked, bedazzled and fluffy thing I could find for her, especially if it had a pink ribbon on it.
My mom is the kindest, most nurturing person I know and she never said anything about whether those purchases helped her. Probably not. Looking back, I’m pretty sure that my behavior was much more about me than it was about her. It made me feel better to do something, anything. What is oddly out of character for me is that I didn’t spend any time confirming that funds from the sale of those items went to help breast cancer survivors or research or anything other than just lining the pockets of the people who sold them. I think that part of it was that I didn’t much care about that, only clumsily trying to show my mom how much I care about her, which is a whole heck of a lot.
Oh how times have changed.
Once I was diagnosed with breast cancer, I was the recipient of a variety of pink soaked contributions along with the t-shirts and slogans about being a warrior, fighter, etc., and, at first, that meant something to me. “Cancer picked the wrong bitch” is a particular favorite still. I confess I didn’t wear many of the gifts and I didn’t always know what to say because every slogan, every ribbon carries such ambiguous feelings for me. As I was trying to wrap my head around all of that fighting and winning and survivorship language, we learned I had actually been stage IV from the beginning. Once my day to day wasn’t just about staying alive through all of the treatments and surgeries, my world expanded into the metastatic breast cancer community.
And I got an education.
What I learned over and over was the sad truth about all that pink fluffy stuff, that usually buying it wasn’t helpful to patients or the breast cancer community. It was so very upsetting to learn that many many companies use breast cancer as a marketing technique to make more profit. Sure, there are some reputable companies that are doing the right thing but they are in the minority. I’ve spent a lot of time since my diagnosis interfacing with various companies, researching their connections/intentions, and calling out the ones who are getting it wrong.
What is less easy to deal with is when an ostensibly well meaning family member or loved one, despite all efforts to educate and share and rant, etc., still insists on labels that hurt, gifts that are about them or reacting with jealousy when you, the sick person, is receiving support.
I came across this meme recently and it resonated with me. When a family member or loved one gets it wrong, it hurts far more than a stranger or an acquaintance. When a family member or loved one ignores the affect of a terminal illness and the treatment and side effucks and behaves badly towards a vulnerable person, it bruises the soul and tears down protections dearly won.
And so, what to do? What can be done when you’ve done all you can and someone you love still behaves badly?
I certainly don’t have all the answers; at the same time, here are some ideas that resonate with me now that I’ve walked the path of family member of a person who is ill and being a terminal patient myself:
- Just like I got it wrong with my mom and didn’t do what was best for her, I suspect that many loved ones are acting out of their own pain and uncertainty. While it’s not easy, making the attempt to walk a few days in their shoes might help to see the situation a little differently. A cancer diagnosis does affect the whole family and despite what “should” happen, some family members just can’t see beyond their own perspective, their own pain, their own glimpses of mortality through your experience. It’s not right or good, it just is.
- Just like I was buried in my own concerns and had a difficult time taking on and feeling my mom’s diagnosis, I think sometimes a person who loves a person who is ill doesn’t have the capacity to handle the emotional part. While this can be insanely agonizing to bear as the person with the illness, this is about the loved one’s capacity, not the person who is ill. I’m aware that this is almost impossible to remember in the moment and giving grace while in pain and hurting is something I can’t do, yet. I’m hoping that will improve with some practice and I’ve been given quite a few opportunities to practice over the last three years.
- Denial is the first stage of grief and I know that some people who are ill and their families often cope by looking away. When the illness is invisible, it’s even easier to look away and behave as an ostrich does when danger approaches, burying their head in the sand. When someone is living with a terminal illness for years and years like some amazing unicorns in the metastatic community, others come to think it was much ado about nothing. As a person with an illness that requires me to stare down death every day, I get the seductive allure of denial and I confess that I have many ways of escaping from reality too; it’s just a lot harder to handle when someone you love does it when you need them in the valleys.
- History and the past of a relationship doesn’t just vanish when someone in a relationship is ill. Everyone carries baggage with them through life and sometimes it is legitimately impossible to lay that baggage aside no matter how dire the circumstances of the family member or loved one. Walking away from the possibility of forgiveness and reconciliation is tragic, especially when the loved one is terminal and the days are numbered to seek reconnection. Yet, the loved one or family member who makes that choice is the one who loses the most.
- Human capability is only so deep. Every person has their own capacity for looking at suffering, for entering into another’s suffering. As I learned and wrote about earlier in my post Entering In, it truly is a rare person who can outside of other people in the same boat.
This list certainly doesn’t cover everything. As an aside, I’m not sure any of this is relevant in a relationship where there is abuse or violence. Those issues are far more serious and anyone who is in an abusive relationship while dealing with a serious illness is free to contact me so I can connect you with resources.
At the end of the day, what I can say with any confidence is that we are all human. We are all dealing with far more than any other human can really understand. When expectations are violated, when you feel let down, when a loved one gets it wrong, it hurts and that hurt is valid. I have no solutions, I’m working through this myself. All I have figured out is that I have to take two steps back, not apply what I would have done in a particular situation and give grace upon grace upon grace.
It’s not easy and I get it wrong more often than not.
P.S. I’m not referring to any one particular person in this post except for myself and my mom where I have specifically said so. If anyone reading this post feels that I am talking to them or about them, you are probably wrong; at the same time, if you think so, maybe that will help you to think and respond differently in a similar situation. All anyone can ask another is that they make the effort to examine themselves. Namaste.