Written by Jessica Ribera
For many consecutive years, Trinity (then Green Lake) had the privilege of hosting a fundraiser for the Metropolitan Seattle Sickle Cell Task Force. Most people who attended can attest that those beautiful rafters were never more rocked and rattled than during the MSSCTF gospel concert! Our PCA connection to the Task Force is Foxy Davison, a leader for the organization. Foxy’s beautiful singing voice and her honest words blessed everyone at those events, and many Trinity Women will remember her teaching for us at our women’s retreat in 2015. Her husband, Jason, is a minister currently on staff at our church relative, Grace Seattle on Capitol Hill. They have three children and are personally affected by the disease.
Attending the event always made me feel like I was at someone else’s party, and, wow, I was so glad to be invited.
The strength of faith and community on display filled my hope tank year after year. The echoes of the responsive “congregation,” the improvised, energized songs, and the love for the black community and its particular afflictions shined through those long parallel windows onto the streets and right through me. Sickle Cell Anemia is a brutal, painful disease. The joy and laments of the people spoke powerfully to me. Certainly, it made my own medical sufferings feel small but also, oddly, validated and seen.
When an announcement went out that the event would be held in February at Rainier Avenue Church, I eagerly punched the details into my phone. A week or so later, Foxy called to ask me if I’d be willing to support the event by speaking on the topic “My Pain and My Praise.” Immediately, I agreed, eager to do anything to promote and contribute to the fundraiser. “I know you just wrote a book,” she said. “I’m sure that whatever you decide to share about your suffering will be great.”
“Oh, crap,” I thought ten minutes later. “How can I get up there and possibly have anything to say to these brothers and sisters? Their suffering is beyond me!” I panicked and told Foxy I wasn’t sure I was right for the job. “No,” she said. “It’s good.”
This isn’t a story about how my talk went. (It was fine, and, Lord willing, the feeble words gave someone in that crowd a connection to the suffering spoken about that night.)
My primary take-away from the experience was the testimony of the Task Force leadership and person after person with the disease: “When I (or people with Sickle Cell) go to the ER for debilitating pain, I have to hope that I’ll receive treatment. I pray that the doctor will see me as a suffering person, not a drug seeker, that when I am exasperated by my pain and the disregard, I will not be called ‘angry.’” They sold t-shirts and sweatshirts with the words “I am not angry” on the front and “I’m in pain” on the back. Some said “My pain is real.”
Even with a full medical chart and Sickle Cell diagnosis, many people are still seen as just trying to get something.
It blew my mind. And the information ripped one more layer off the blind-fold from my eyes. I was acutely upset for weeks, and I still think of it often. “People I know, people I trust, people who sing with joy and say Jesus’ name are being mistreated in the same places I have been for treatment.” Understanding that my level of disturbance at simply hearing the facts was nothing compared to actually facing the facts, made an indelible impression on me.
And now here we are in this place of inflamed tensions, amidst a crowd of sufferers fighting to be seen. I feel as pathetic as I did when Foxy invited me to that event in January, thinking “What can I possibly have to offer?” I keep coming back to “my listening ears and willingness to learn.” It’s not about me, but as I tell my children, all I can do is pray and make decisions about what I must do in light of the reality of God. I am afraid of a knee-jerk, shallow response to these very deep things. I don’t want to fly into action that ultimately may fizzle out, and I am loath to rush into a space where I do not know what I’m talking about and will do more harm than good. So I’m looking to my personal connections and praying for God to help me follow the gaze of his black followers.
Sickle Cell and its ridiculously disproportionate effect on the black community will not disappear overnight. Suffering from racism isn’t a trend. Lord! Let our love, our prayers, and our faithfulness to your people last well beyond the incessant news cycles.
If you’d like to know more about the Metro Seattle Sickle Cell Task Force, please visit their website. Pastor Jason Davison recently preached at Grace from Hebrews. His sermon addressing suffering and fellowship with Christ is available on YouTube.
Pastor Luke and a number of musicians from Trinity were also invited to that gospel concert fundraiser. I didn’t have the presence of mind to record his whole song, but here is the bit of footage I took.