Being Not Doing

One of the most challenging things about this diagnosis is the lack of control and lack of structure it has brought to our lives. How do we make sure that we own each day and create some structure for ourselves while also recognizing that Cassie has many days where low energy levels require her to do less? How do we learn to be okay with days that are filled with less doing and more being?

It’s strange to ever write the word lucky in relation to a late stage cancer diagnosis but we both feel lucky that we have been able to step away from our jobs. Cassie is not working at all and Dan has cut back by around 90%. However, without full-time work to occupy our days, we find ourselves making it up as we go along. Some days we have the energy to do a lot and keep a pretty full schedule. We exercise, see friends for lunch, work on a house project, go to a movie, etc. Other days taking a shower is about all we accomplish. (Some days not even a shower!) We are realizing that we have to be OK when we are not actively out doing things even though we are both doers and are both used to active and busy lives outside of our home. Learning to just be is new and hard but also grounding, liberating in some ways, and absolutely essential given our current situation.

This is made all the more difficult by the fact that we both almost always wake up feeling sad and like our lives have gotten really small revolving around the cancer. Fortunately, along with this morning sadness, we both have the most energy early in the day and we now know that we often have to deliberately focus this energy on re-centering and re-framing for the day ahead.

We’re coming to learn that each day (whether a doing-day, or being-day) is best with a little structure and intentionality. We try to have regular scheduling meetings to talk through the week ahead and the weeks to come. We have designated our mornings “self” (thanks Browns) where we each schedule whatever we want. For our afternoons and evenings, we try to plan something from at least one of our “buckets” and we try to have a couple of fun hanging-out “projects” in our back-pocket. For example, we recently completed watching every movie in the Marvel Cinematic Universe in story (not release) order.  On being-days, even just naming that we are going to stay in and read or do a crossword puzzle is helpful. Maintaining this level of intentionality about our days though is much easier said than done.

One particular challenge is that we don’t know in advance whether it will be a doing-day or being-day as this depends on how Cassie is feeling and her energy level. So ideally we would have two plans for each day but instead we are lowering the bar and just trying to take the being or doing as it presents itself. Within all this uncertainty, one thing we know for sure is that for us, every day is better when it includes multiple things that keep us connected as a couple. This could be a dog walk or a game of cribbage or entertaining friends. We have learned the hard way that unless we focus explicitly on connection we can easily drift into just doing our own things. And for us, right now in particular, living parallel lives simply does not work! Whether doing or being, togetherness is key.