Managing Uncertainty

I was having a conversation with a friend the other day, discussing 2020 and all that implies.  Naturally, in this conversation living through a pandemic and naming the different changes and feelings associated with it took center stage.  Some parts of this conversation were very familiar, that I had had conversations with other persons that followed a similar theme.  

Here are the main points and commonalities I want to highlight:  everything was changing so quickly from day to day, which included new limitations, new data, new insights, and overall an unpredictability into their lives that they were not used to.  Things that they had taken for granted--such as being able to go to a coffee shop or pop over to a grocery store for something they needed for a recipe--now had extra steps or were impossible or a number of other complications.  

In short, their lives now had a significant level of uncertainty to them.  The security of their worldview, all of the pieces that they may have taken for granted were now put into question.  Right now, we can't plan a vacation because we don't know if travel will be an option.  Our favorite restaurant might not be open today or have limited hours.  For those with school-age children, it's in the air whether classes will happen in person or online or some mix of both.  Hell, my first day of classes for the new semester has already been canceled.  How can anyone plan for all these different possibilities?  We've lost the certainty and the security of tomorrow.

*Insert Rueful Laughter Here*

Folks, that's what it's like to live with a chronic illness.  I'm so sorry that you understand now, but I'm also glad for the forced empathy.  It's one of those places where I need empathy but it takes a lot of energy to explain.  That doom sense?  I'm used to it which means I'm oddly poised to be successful in navigating it in this context, too.  It doesn't make it easy, necessarily, just...familiar.  I don't trust tomorrow to be there.  I struggle planning out long-term in the future--I can dream, but I can't plan.  I'm accustomed to that loss, and as a result I function more flexibly with "normalcy" and "autonomy" upended.  I honor the feeling, but I don't tend to linger in it quite so long as I once did.  Even the feelings of isolation, that we cannot meet in person, that feeling was a huge part of my experience while I was convalescing.  

To be put in some examples:

• I have no idea what my body is going to do tomorrow.  I could be trying to go to the grocery story and blow an ostomy bag, need to turn around and change my clothes, and then feel miserable for the rest of the day, regardless of what other plans I might have had for the day.
• Similarly, when I wake up to a low spoon count, the day has to adapt to that, regardless of the goals I had for the day or the people that I let down by changing plans.  It's an emotional minefield.  Consider the emotions in telling family members that you cannot visit them and the complicated feelings that can invoke but take away the pandemic as a clear reason why, where well-intentioned folks ask "are you sure?" and dig that knife just a bit deeper. 
• I cannot plan long-term because I don't trust tomorrow to be there.  I could have another flare up next month that knocks me out of nursing school.  I'm stable in a lot of good ways so I don't find this likely but the world can change in a moment--unlikely is not the same as impossible.  
• Feeling isolated because I cannot meet people where they are, and I did not always have the chutzpah to ask them to meet me.  I had a few dedicated persons that reached out to me, but I lost contact with a lot of people that year.  At least with the pandemic there are enough other people feeling isolated that I would say folks are on-the-whole more responsive to online options and there are more opportunities, even as folks are still sorting out when/how to ask.  

So what does this mean and what wisdom do I have to pass down?  Great questions.  Glad I pretended you asked.  We can acknowledge that this is tough, and yet there are freeing elements of this mindset.  As a specific example, by not expecting tomorrow to be in a particular format, I have developed the flexibility to move more in the moment.  This builds a resilience over time.  I also manage some of that anxiety by making contingency plans--without crossing into obsessing about contingency plans, mind you--which allows me to be prepared for at least some eventualities.  Over time and some specific intentionality, I've built confidence in my own ability to adapt.  I'm pleased to have the skills in the same breath I'm furious that I have to depend on them for the rest of my life--chronic means chronic.  

I've heard a number of folks talking about "returning to normal," where they don't have to worry about getting sick or spreading illness to their loved ones--there are some people that this absolutely IS their normal.  The weight of that is difficult to carry.  And if you feel an unmet need of empathy, that's par for the course, too.  We can get better at handling the baggage as time goes or we can make the stubborn single-trip-in-with-the-groceries-even-if-it-kills-us kind of white-knuckled striving through this event.  

What skills and what empathy we choose to take out of it, that's purely up to us.  And it may not start as something productive, maybe taking years to turn into a good something.  It's okay to feel bad and upset with the circumstances.  It's possible to accept that you feel upset/frustrated/displaced/uncertain AND accept those circumstances at the same time.  Both can exist in the same space, and those emotions need to be honored.  In these ways--what we take and how we grow and whom we've lost--it's never over for any of us.