Tracy Chapman has had a resurgence in popularity over the last year as Fast Car scaled the country music charts — and her performance with Luke Combs on the Grammy’s stage brought her well-deserved kudos and the admiration of a new generation of fans.
But, it did not take a resurgence in her popularity for me to appreciate her. I still vividly recall listening to her poignant anthem Talkin’ about a Revolution on my old school Walkman as I pounded out countless miles running while I was at Wellesley College. And years later, upgraded to an iPod, my pace would always pick up on the streets of St. Petersburg and Moscow, Russia when Give Me One Reason would come on.
However, it was her powerful story of grief and loss, The Promise, that helped get me through some of my darkest hours after my infant son’s murder in Russia — and the blind eye that Russian authorities turned to the desperate pleas of a heartbroken mother. I was never able to get justice for Valerij — truthfully, I don’t know if justice even exists in Russia. But, somehow, between the tears, and the music, and the counseling, I found a fragile sense of peace and the ability to move forward (if not on).
And, now, years later, I listen to The Promise for another reason — as I work to grapple with my own mortality and my journey through palliative care with a rare autoimmune condition, relapsing polychondritis. Despite the power of modern medicine and the advent of biologics, I remain, as I have my entire life, stubborn — but this time, I am stubbornly refractory to treatment. And, there are days when I can almost feel and see the end of my journey.
This is not said as a pity party — pity is an emotion that I have never really done. And, this is not meant as a farewell to my column. I plan to write this blog until my fingers will no longer type out letters … and, when that day happens, the Luddite in me will embrace technology and will find another way to get this blog out.
Instead, it is said as a promise to keep moving and fighting, and a reminder that we can all play a role in this upcoming fight for democracy and as President Biden would say, the very soul of this nation.
As John Wesley, the Methodist theologian, explained:
“Do all the good you can,
By all the means you can,
In all the ways you can,
In all the places you can,
At all the times you can,
To all the people you can,
As long as you ever can.”
This good may look different for everyone — we all bring a different toolkit to the fight — and our places for fighting the fight may vary. For some people, it will be in the halls of the State House — advocating and testifying for bills that impact the most vulnerable in society — for others it may be at the doors of persuadable voters, having the really tough conversations, and for others, it may be sharing their opinions on various social media platforms.
I promise you this — knocked down and battered, struggling to climb the stairs or even fighting to be able to swallow food to get needed calories in — I am in this fight. And, I hope each and every one of you are in it, to November and far beyond …
***
On a personal note, many of you have reached out over the last several weeks and asked how you can help me through my difficult journey through palliative care. And, I have given it a lot of thought and come up with three specific things:
- Learn more about relapsing polychondritis and other unicorn diseases that tend to be forgotten by medical researchers. Long after I am gone, others will be affected by this illness and I hope that their journeys will have fewer potholes and pitfalls than mine has had. More information about relapsing polychondritis can be found here: https://rarediseases.org/rare-diseases/relapsing-polychondritis/
- Basic tasks around the house, including cooking, are very challenging — often dauntingly so. We have a MealTrain that makes all of the difference in the world to our little family: https://mealtrain.com/k0o18v
- We also have a GoFundMe. The costs of battling a rare disease in this country, with our broken medical and health insurance system, are daunting, as the stack of bills from Boston hospitals is testament to. My gratitude toward everyone who has supported the GoFundMe is boundless: https://gofund.me/1d28181c
-Bree J. Schuette
