Echoes of Pain

 In 2011, the year I trained (and ran) the Chicago Marathon, I triggered my autoimmune illnesses. My body started the long work of falling apart during my training, and when I failed to take enough rest afterward, choosing instead to dive into boot camps and more running, negative symptoms piled up. The gut dissolved, which meant that it couldn't produce neurotransmitters, which resulted in severe anxiety. Then the pain started in my head. 

No one knew what was happening with the head pain, I had to do my own research and bring it in to my internal medicine doctor, who actually did listen to me. I was extremely lucky in having him by my side, but he couldn't prescribe anything to take the pain away. In the decade since my illness I have realized that it was a rare form of sarcoidosis that attacked the cranial nerves. At the time it was coded as "burning scalp syndrome."

I recently read this article Neural Sarcoidosis and had flashbacks to that time. The brave author describes her pain well, it's what I felt, too. Her doctor prescribed opioids to help her function, but for some reason I never ventured into that territory. I vaguely remember being given a referral for a local pain center, but I did not make the appointment.  I was certainly in enough pain.

Over the years I have been grateful that I didn't find an addictive medicine that would have worked for me - I surely would have taken it. Instead I battled for years, slowly rebuilding my gut and my strength with the help of many family members and neighbors. I still have residual nerve pain, but it's manageable with a headband and Advil. I've been able to recover to the extent that I have two "Top Ten" times nationally in my swimming age group of 50-54. I think this is partly a miracle.

Right after I read the article on sarcoidosis I listened to a podcast called The Retrievals. The series deals with women's pain, pain they didn't have to feel. It involves opioids, the necessary use of these as well as addiction, or use gone wrong.  The doctors and nurses in this podcast didn't listen to women who spoke of their pain - they were ignored, blamed, overlooked, called hysterical.  But the women were right. 

As women, we need to find doctors who will listen to us. I was lucky to have one a decade ago, one who listened and managed somehow to steer me back to health by following my lead. 

Not Good for the Soul

"And then, also, just to personalize things, I don’t have quite the same feelings that you talked about, Carlos, towards Notre Dame towards Harvard itself because I sort of feel like the institution corrupted me a little bit, right? That I went there as an ambitious kid, obviously, but mostly, it nurtured my ambitious side at the expense of my intellectual and moral side, and that that’s sort of what these schools do. It’s not just that you go there because you’re ambitious. It’s also that they exist to teach you that you should want to be more ambitious than you already are in ways that is not — like, I don’t think Harvard was good for my soul, for instance."

Ross Douthat, "I Don't Think Harvard was Good for My Soul"

When I read the transcript of this podcast episode from New York Times editorialists my pulse quickened and my heartstrings twanged in resonance. The article - inspired by the Biden administration's pursuit of a lawsuit against Harvard for its policy of legacy admissions - described my feelings about the institution better than I have ever been able to do.

In our society, upper-middle-class families and their children compete for grades and varsity spots and good high schools, but can go to any college and do well long-term vis-a-vis job, marriage, household income.  I recognize that this unfair advantage comes due to decades of racist housing, lending, and hiring policies. Opportunities are already skewed way out of proportion to merit.

What the Ivies and other so-called "elite" institutions of higher learning do is bait the upper-upper levels of society into competing for the thinnest margins of high ambition, the promise that the applicants and their families will be guaranteed a place in the nation's stratosphere if they finish school at one of these places.

Which seems ridiculous on the face of it because there are no guarantees in life - ever - and going into a mountain of debt for your undergraduate education seems more likely to topple you from the pyramid than to put you on top (only students who exhibit financial need receive it, and many of these quality individuals do not choose to apply). But people like the idea of guarantees and they buy into it at their own expense and to the benefit of institutions like Harvard, which has the biggest endowment in the world outside of the Catholic Church.

A Sackler was in my freshman dorm (which is revolting now), a Roosevelt in my upperclassman House. I knew would-be governors, Secretaries in the US government, successful people of all persuasions. My closest friends (who did not pursue the above careers) value community, working for the benefit of others, and relationships. They seek to protect their families and put good energy into the world. 

I learned from my missteps. It was a mistake for me to choose a college that prioritized status and wealth and power when I did not really want those things for myself.  My ambition at the time didn't meet the standards of the institution, which I soon learned.

Which doesn't mean that I gave up all my worldly possessions and went to live and work among the people who need it most. No, I'm being hypocritical. We're lucky enough that we could choose a good neighborhood and a great school district in which to raise our kids. The small difference being that I urged my children to attend state schools and stay away from elite institutions. One ignored me and applied anyway, but my record of zero involvement with the school, zero donations, and low employment status gave him no legacy advantage. He's far more qualified than I was, but that didn't count for much - and I was grateful.

When we already have so much, why scrape, bend and bow to the god of having the most?

Bottomless Joy

We've just returned from spending four days with my family in Montana, a state where both my parents were raised, where they met, married and later retired. They built a lovely home on Flathead Lake where my siblings and I, our spouses and children, have gathered for twenty-plus years. My father was a city councilman and mayor in their small town, and when his health declined, my mother nursed him for seven years, largely in the house and town that previously knew them as a power couple.

When our group of twenty-two gathered for a singalong last Friday evening, Mom was the brightest and most festive voice, the loudest clapper. My brothers danced a jig around a red solo cup as we sang the songs we've adopted over the years as family anthems: the Proclaimers "500 Miles" with its da-da-da-da chorus that we smother with "Clav-a-det-scher"; with John Denver's "Wild Montana Skies" and with the Georgetown fight song (my father, my brother and my nephew are Hoyas).

As I looked around the circle, every face expressed emotion: those who were leaving early the next day had tears in their eyes, the youngest grandchildren were wide-eyed and perhaps a bit horrified by their fathers' boisterous vocals and crazy dance moves, and the spouses were good-natured, singing along with not an eye roll in sight.  But Mom was my favorite to watch, her smile beaming and her blue eyes bright, not a tear even threatening - only joy. It's as if the many years she spent accompanied by sorrow carved out a hollow that is now full of happiness and light. I've never seen such capacity for happiness, such joy reflected back on the people who co-created it.

My brothers, my sisters and I are so blessed in the luck of having two strong parents who made their love known to us throughout our childhood, and we are impossibly blessed now with a strong mother who put a an impossible load of caregiving on her back - only to stand without bitterness when she was relieved of it, ready to fill that space with more love, with light and with joy.