A note about this post: Now feels like the right time to share an aspect of my life that I’ve kept largely private, and I’d like to say first that sympathy or “shock value” are the furthest from my motives. So many of us are plagued by pain that isn’t outwardly expressed or understood, and we press on regardless. This is the story of my recent medical saga; and, while sharing it will be therapeutic for me, I hope some of the accompanying self-observations may be helpful to you and also allow us all a safe place to share.

Pain has been a mainstay in my life for long enough that it has become my “normal.” Currently I live with ongoing knee issues, nerve issues, rheumatoid arthritis, and other mystery autoimmune symptoms. My day-to-day can be quite uncomfortable, to say the least. (Again, no sympathy, please! Just read on.)

My most recent diagnosis and surgery solves a 17-year mystery-battle with crippling nerve pain that radiates like hot electricity up my neck, down my back, into my fingertips and back again. The pain first showed up in high school. As it stands now, I have lost function in my last two fingers, and my hands and forearms are different sizes due to muscle loss. My right arm is littered with numb spots and is almost constantly tingling. (I could go on, but you get it.) I had surgery a few years ago to relieve some of the nerve pressure at my elbow, but the root cause was still a mystery. Crazy, right? I’d be lying if I said there weren’t times when I’ve felt like giving up and rerouting my life plan entirely.

A team of top neurosurgeons at the University of Michigan finally diagnosed the issue in January of last year, and I cannot sing their praises enough. They persisted on this perplexing case until at 6pm on a Friday, after first sending me away and then calling me back in for additional “shot in the dark” tests, they finally found the issue: I have an extra rib. Yes, an extra rib at the top of my ribcage that has been severely compressing the bundle of nerves that feeds my entire bow arm. ‘Thoracic Outlet Syndrome,’  as it’s called, only causes serious problems for people that use their hands/arms more than most or in a particular way, like bowing a violin several thousand times a day. It seems silly, but this little rib has been the source of physical and emotional distress for over half of my life. It’s led to countless inconclusive tests and visits to specialists, many of whom told me I may need to consider another career – which, of course, was out of the question for me (more here).

That all being said, and despite pain making life more difficult, it has also given me what I consider to be one of my greatest strengths. (And, maybe surprisingly,  it was NOT learning to push through pain and attempt to be Superwoman.)
I’ve learned to “default to empathy” in all situations, and it has truly changed the way I live my life. For years my pain made me bitter and resentful, but now, it makes it that much easier for me to identify with others and have compassion for anyone else suffering in any way. This took a conscious shift in mindset and certainly isn’t fool-proof, but now I believe my history of pain allows me to have empathy readily available in most moments, even for those whose lives are still rooted in resentment and anger.

“Empathy relies on experience. The more we hurt, the more deeply we can care for others hurting.”

When I’m confronted by not-so-nice individuals, I consciously replace the words “what the f*ck, man?” in my head, with “you poor thing.” It may sound ridiculous, but it works! This shift in my thought changes my whole demeanor, and theirs. It’s not uncommon for me to come across a tired ticketing agent or short-fused fellow traveler and I’ll do my best to create a narrative in my head that involves their kid being sick, spouse having left them, or a plaguing physical pain of some sort. Whether any of that is true or not, it’s easy to trust that that person’s day is harder than mine, and I watch their reaction change when I meet their nasty-ness with a sense of care. A warm smile goes such a long way. Teachers will totally get this one, and nurses seem to be absolute masters at it.

I had surgery last Thursday (Happy Valentine’s Day) to correct the rib/shoulder issue. As it turns out, mine was a rare case that involved a particularly extreme impingement of the nerve bundle, which was scary but also very validating to hear. They didn’t have to remove the rib, but did remove a whole lot else that was getting in the way.
The operation went well, and the surgeons were downright giddy upon visiting me in my hospital room the next day. “We see this syndrome a few times a week, but a case like this we only see once every 3-4 years.” (Cool, I guess?) They were eager to see my already-improved range of motion and regained sensation in spots that had been numb for years. It will be a long but very optimistic recovery.

If any of you are identifying with this tale of plaguing pain, be it physical or emotional, please know that you are not alone and I (and so many others) have such undying sympathy for you. Smiles are a little harder to summon, wake-ups require more motivation, and fuses can be that much shorter. It’s not always easy, but I believe our pain gives us the life-changing ability to care deeply for each other. We can feel for one another in ways we couldn’t unless we’ve lived it. You’ve got a story to tell, and your pain truly is a gift if you choose to use it.

Special note: I cannot say enough good things about the surgeons, nurses, and techs at the University of Michigan neurosurgery unit, as well as my team of loved ones who seem to have unending energy for my care and comfort. Somehow you all managed to make surgery and a hospital stay a beautiful experience.
A lifetime of “thank yous” to you all ❤️

Sincere love to you all, drriifters 💙🌏💨

Diana