This post comes from a pop up writing workshop with Wildfire, “the only magazine and writing community for the women “too young” for breast cancer.” I’ve written before about how I’ve been honored to have some of my writing published in various issues of Wildfire over the years (and will again in the upcoming MBC Legacy issue) and the pop-up workshops are only some of the amazing classes April offers.
Without further ado, here’s the response to the prompt, “My Invisible Work … “
Every day, I have to set aside all of the fear and anguish and grief and pain and all the burdens that come with living while dying of an invisible terminal diagnosis. I force myself out of bed each day, adjusting to the aches and pains more likely associated with someone much older than my 43 years. I paste a smile on my face for my kids as needles run up and down my legs, as the scar tissue from pining both femurs five (5) years ago prevents my hips from moving easily, as my feet and hands protest any encounters with the floor or fabric because of the hand/foot syndrome. Just moving is often tortuous.
Even when I struggle to climb stairs and can’t keep up with their nimble limbs, my boys have learned over the last five (5) years to ask, to slow down, to watch for the signs of a flare of my pain. And they sometimes put this knowledge to use, mostly my elder son. My younger son follows his lead at times.
And this is the silver lining of an invisible illness, invisible symptoms, the effort to have something resembling normal in our family life, they see it all.
I think about their future wives and children and friends. How they will know how to show empathy and care and concern. How they will watch for those small signs that all is not well. How they will look past a pasted on smile to the effort behind it. How much some movements cost irreplaceable spoons.
There are those days when treatments and side effaces mean that I don’t get out of bed much and that pasted on smile slips. And there is a lesson there too, how we much honor our bodies’ need to reset, to recover. Some more than others.
I didn’t make space for that recovery, that rest, before cancer and I shudder to think how this lesson would not have been clear if MBC hadn’t invaded our lives in 2017. They won’t see the consequences of working too much and denying myself what I needed to be well.
Health and being well, those are also invisible, also concepts that can be felt more than seen. I am reminded that more is caught than taught and I may have the strength to carry on the invisible work of being present in my children’s lives again tomorrow.