It is easy to embrace the happy accidents, creative joy and adventure that accompany a practice of curiosity. A curiosity rooted in something amazing or unusual, that captures your attention and empowers you. You feel a sense of presence, now-ness, flow.
It starts with exclamations of awe, or a sudden gasp, or hush.It is fueled by passion.You want more.
Practicing curiosity is an active state, a pursuit. It is what happens when you go beyond wonderment and seek insight. Curiosity is a means, not an end. Curiosity drives the advancement of knowledge by combining purposeful observation with persistent questioning, bringing some order to the chaos.
And this is important:there is a lot of chaos! Confusion, fear and uncertainty make it hard to do anything well. Practicing curiosity when it demands attention to things unpleasant, unwelcome and unknown is challenging. This need-full, demanding curiosity comes from real accidents, from events and situations that turn you sideways. You are weighed down by the unfamiliar, the risks of knowing or doing seem too great. You feel disorientation, restlessness, paralysis. It is the kind of curiosity expressed when you think “I can’t imagine having to deal with that!”
It starts with shocked silence, or angry, disbelieving outbursts.It is fueled by fear.You want it to end.
When it is choice-full and affirming, the practice of anything feels more like play. Still, practice is about performance. It turns ability into skill that can be exercised reliably and consistently, especially when circumstances are not ideal. Practicing curiosity is no different. It is a tool for making sense of an uncertain and changing world, especially when you’d rather just hide under the blankets.
From the awesome to the awful, well-honed curiosity helps you focus on the essential, to see the details, to ask better questions. It is both serendipity AND sense-making. It can help you out of a difficult situation. Or it can get you into one. Too much information and too little understanding, aka info overload, can terrifying, a recipe for disaster:
But so is the sudden onset of unremitting pain that doubles you over when you’re awake and has you whimpering when you finally do fall asleep, bouts of nausea and fever and being generally ill, too many trips to the doctor only to be told that all the blood tests are “normal”, and all of this going on for months.
So.
I started with what I knew about me:
- a growing list of joints and body parts that were some combination of swollen, stiff, red, tender to touch, or painful in varying ways all the time.
- The awareness that many of these pains were familiar and recurrent, beginning over 30 years back, and completely unrelated to injury.
- That I was under 10 when first diagnosed and treated regarding chronic pain involving inflamed and damaged cartilage and joint dysfunction
- That I’d had 2 separate positive ANA results, at around age 7 and again around 28.
- That a referral to a rheum doc the second time,led to a diagnosis of fibromyalgia.
- That it was very much a diagnosis of exclusion because my bloodwork was otherwise negative and some of my trigger points were atypical.
- That endometriosis was NOT the only explanation for abdominal, low back and pelvic discomfort I’ve experienced for most of my life.
- That my body produces scar tissue inappropriately.
Somewhere amidst words like rib/flank pain, inflammation, arthritis, connective tissue, autoimmune and positive anti nucleic antibody, combined with a little bit of my old friend serendipitity, a result caught my eye. I think it was a lupus related health message board.
Yes, I know, not much to be learned from such places; really the worst place to go if you are unsure or scared regarding your health and don't know how to make sense of your experiences let alone make sense of what you are reading. Thankfully that last bit isn't really a problem for me, and something in the snippet I saw seemed promising.
Imagine doing a puzzle and you’re given only a simple description of the picture. You have all the pieces for that puzzle, but there are pieces for other, similar pictures mixed up with them. You can put some pieces together, but you don’t know where they go relative to other pieces, because there is more than one place they could go. And then, you find a piece that joins this group to that group in a way that lets you finally see how picture comes together.That’s what I found when I clicked that link. The one puzzle piece that helped bring the picture together, in the form of a new word.
The –itis suffix means inflamed, so enthesitis is inflammation of the entheses. Turns out, In my case, inflammation in lots of entheses in lots of joints, from head to toe.
Spell check will not recognize it. Or entheses, which it wants to change to enthuses; or the singular enthesis, for which it has no suggestions. In anatomy, etheses are insertions (which in written text are marked out by those things called parentheses) into bone, where ligaments (spanning joints, attaching to bone at each end) and tendons (attaching muscle to bone) transitioning from flexible collagen based fibres to a calcium based ossified structure. That sentence has 3 entheses.
Every joint in the human body has a multiple entheses for the ligaments. Tendons attach muscles to bones near joints, and also along the bones as well. Ethesitis pain can happen anywhere in the body.
All of this was back in February 2016. I hadn't been able to work since early January 2016.I’d been sick since before Christmas 2015. My TM joints started acting up in October 2015 and my pants had felt heavy on my hips through the fall. All the smoke in the summer of 2015 made me feel unwell and took a toll. It was still a month before I’d see the rheum doc. That visit, in March 2016, confirmed what I already knew: I had arthritis. Turns out it is just one of many –itises I have, and in fact have been living with for most of my life.
I’m still trying to put together the entire picture. And it feels like I'm the one responsible for it. For all the time I've spent in doctors offices and the medications, I'm still so unwell, flared up and in pain, there's probably still something missing in the diagnosis. So I try not to spend too much time on questions such as this:
What if I’d been referred to a rheumatologist in my youth with that first ANA, and was having ongoing upper back, neck and shoulder issues, instead of (or as well as) a sports medicine orthopedic surgeon?Because truly, there are too many other matters to ponder. Some have actual definitive answers. Some feel like they should, but do not. Most demand ongoing nuanced consideration as my health and circumstances change.
- What do I do now?
- Is this how Schroedinger’s cat feels?
- What does it feel like to have anxiety about your body?
- Just how many –itises are there?
- How did thinness become so dangerously equated with health?
- Does pain signify damage?
- Why "The Princess and the Pea" is a really sad story.
- Where did the art of medicine go?
- How do you rest your torso and be doing anything but sleeping?
- Can methotrexate and other DMARDS cause malabsorption problems including celiac disease?
- Is there a relationship between wearing 2-3 inch high heels in front of your patients and being devoid of empathy?
- How long do you take a medication without real improvement before it should be considered a failed therapy?
- How concerned should I be about the ebb and flow of all these pains and dysfunctions?
- At what point do you give up on your doctor?
- What are the dangers of diagnosis?
- What supports are there and how do I access them?
As I’m able, I’m going write about these and other things. The conditional in that last sentence is a big one, because nothing about using a computer is comfortable for very long these days. I started this in June and it is now September. Part of that is me being fussy, but mostly not. Every activity is a balancing act of what I’d like to do and for how long, what I’m capable in the moment, how much discomfort it causes and how satisfying it is. And that’s enough for now.
