Hank Green of the Vlogbrothers recently released a video about his experience being diagnosed and coming to terms with ulcerative colitis and how it affected his perception of his future, ultimately relating it to our current health crisis. He calls it the sudden obliteration of expectation – the wuthering.
I knew one thing, which is that my future definitely was not going to be what I had imagined it would be.Hank Green, The Sudden Obliteration of Expectation
At the Submissive Safe Space Orlando meeting I attended a few weeks ago, the discussion focused on our relationships with our bodies. I spoke about my guilt because due to my chronic pain, I often have limited energy, I can’t serve as much as I desire, and I often need to spend multiple days in bed every week. While I was given several pieces of great advice related to my guilt, it was clear to me that many of the attendees didn’t understand what I meant when I spoke about chronic pain. And how would they if they haven’t experienced it? It’s not a topic of polite discussion.
Everyone has experienced pain, even intense pain. Many people have broken bones in school sports, for example. But when most people think about pain, they are imagining pain that has a clear endpoint – A broken bone heals, a dog bite scabs over, a headache fades. When your leg is in a cast, you can imagine a day when it will be free and won’t hurt anymore. Yet chronic pain by definition has no clear end. Maybe a new treatment will be developed or maybe the pain will leave as mysteriously as it arrived, but nonetheless, you have no guarantee of a future without pain.
More so than the pain itself, the endless nature of my illness has affected my mindset the most. I can never set plans in stone because what if I have a migraine that day? From casual social activities to job opportunities, I can’t predict what my pain will interfere with on a given day. When a day becomes a sick day due to unexpected flare-ups, I’m not surprised, but I’m still disappointed.
I’m embarrassed to write out all the ways that pain has changed my life. I worry that I would be complaining. Perhaps I’ve done enough complaining in my life.
Essentially, I’ve decided that I can’t let pain put my life on hold. There has to be a balance between taking a sick day every time I have pain and just powering through all of my pain. I cannot let my pain put my life on hold – It has already done that enough.
Yesterday, I had quite an intense migraine. The pressure in my left eye was incredibly unbearable, so I tried to sleep through it. In the evening, I was feeling mostly okay, and spent some time with Miss Vanessa, reading Raven Kaldera’s contract with Joshua out loud, discussing a shared values statement, and evaluating some of the books I recently bought on monasticism. By the end of our time together, I was exhausted.
As I left the room to head back to bed, I apologized to Miss Vanessa that I only had a few hours of energy that day, and she pointed out that, yes, my energy was limited, but I gave all of it to her in devotion to our ideals. It clicked for me that, while I need a lot of restorative time, when I use the energy I have to provide indirect services such as organizing for LSTO or writing for my blog, I am spending the time I have well. When I directly serve Miss Vanessa or a member of our household, I am spending the time I have well.
I must always remind myself that I am spending the time I have well.