Of Saints, Suffering, and Scleroderma

In my flesh I complete
what is lacking in Christ’s afflictions (Col. 1.24).

“Hello, Faddah!”

I’m guessing it was probably the first time Pope John Paul II heard that one in the Vatican’s audience hall. It was my sister, Adeline, who was visiting Rome with my mom and dad many years ago. None of them were Catholic at the time, but my pastor had helped them secure an invitation to a general audience. Although my family had tremendous respect for the Pope, they went to the audience mainly as tourists – devout evangelical tourists, to be sure, but tourists all the same.

Following his remarks and a blessing, John Paul made his way down the center aisle, nodding and smiling and embracing the faithful as he went. My sister, right on the center aisle, was distracted as she gathered up belongings. Suddenly she felt a stillness overcome the crowd around her – she turned. The Holy Father was passing and looking directly at her! “I had no idea what to say,” Addie recalls. “The only thing that came to mind was that line from that movie we watched as kids.” She meant Going My Way, and the scene where Tony Scaponi, a neighborhood ruffian, guiltily addresses Fr. Fitzgibbon (Barry Fitzgerald). “Oh, hello Faddah!” Tony tosses out with a breezy hand gesture, trying to deflect attention from a stolen turkey. My sister in Rome, suddenly confronted by a pontiff, stole Tony Scaponi’s line, channeling a bit of Allan Sherman in the process. “The Pope paused and smiled,” Addie remembers, “and then he looked at Mom.”

I’m told Mom was crying – weeping openly, if I know my mom – and John Paul reached out to clasp her hands. They were hands gnarled by disease, hardened and bandaged and pockmarked with lesions. Vulnerable, hurting hands, belonging to a vulnerable, hurting invalid who’d prefer they belonged to someone else.

Sclerodactyly is what the docs call it, a thickening of the skin on the fingers. Plus, my mom suffered from Raynaud’s syndrome (acute sensitivity to cold and limited circulation in the extremities) and calcinosis (scattered deposits of calcium in superficial tissues). All of these are common symptoms of scleroderma – a terribly disfiguring autoimmune disease that mainly affects the body’s connective tissues, namely collagen. The immune system goes awry and attempts to fend off nonexistent threats by producing more collagen than necessary. This results in characteristically tough, stiff flesh, especially in the hands and face. In fact, the word “scleroderma” literally means “hard skin,” and my mom had it bad.

My mom’s (and our family’s) journey with scleroderma started back when I was in high school. It was summer, and I was on a church work trip to Voice of Calvary Ministries in Mississippi, working on a farm in rural Mendenhall and rehabbing houses in Jackson. One afternoon I was napping after a long day of yanking out nails and hauling refuse, and I lay on the floor surrounded by fans, hoping for relief from the heat. I woke to someone jostling my arm, and I looked up into the face of a VOCM staffer. “We got a call from Colorado,” he said. “Your mom is sick – real sick. I’m to have you call home.”

I got hold of my dad at Boulder Community Hospital. “She’s OK, Ricky,” he said. “It was a perforated ulcer, and they’re dealing with it. But there’s something else.” I was still a bit groggy from the nap and the heat, and I tried to focus as I heard Dad pass the phone to Mom. “The doctor thinks I have something called scleroderma,” she told me. “It’s why I’m having pain and numbness in my arms, and my fingers are getting so stiff.” She told me not to worry. “Just pray for me, Ricky,” Mom asked. “Pray for healing.”

No healing came despite loads of prayers, not to mention countless doctors and specialists and experimental treatments. You see, there is no healing for scleroderma, but rather only symptom management and “optimizing” one’s quality of life. Mom couldn’t buy that, and she was determined to prove the experts wrong. Acupuncture and biofeedback and herbal remedies led to a trip to China and a world-renowned natural healer. No luck. At one point she considered visiting Oral Roberts’ Prayer Tower in Oklahoma to plead for God’s mercy and a miracle. Even Lourdes wasn’t out of the question – no small thing for my staunchly Presbyterian mother. She had great faith, and she never stopped believing that she’d be completely healed of that nasty disease.

Yet time went on with no relief in sight, and Mom began to express her faith in anger. “Why isn’t he doing something about this,” she’d fiercely exclaim. “What’s taking him so long?” She refused to allow some illness to keep her from her busy life: Typing and clerical work for the high school, playing the piano and organ, caring for her family, home, and beloved pets. In time, though, as her rigid, curved fingers grew increasingly immobile, she had to accept the limitations her condition imposed on her. What’s more, there were indications that the disease was progressing and was beginning to affect her internal organs.

Mom sought out comfort and palliation where she could find it – prayer meetings, support groups, and, of all things, a Benedictine abbey just a couple miles down the road. By the time her scleroderma was becoming a mortal challenge, I had became a Catholic in Chicago, and I would spend a lot of time at St. Walburga’s Abbey on my sojourns home to Boulder. Eventually my mother’s curiosity overcame her anti-Catholic scruples, and she agreed to accompany me to the Abbey every now and then to find out what it was all about.

On one of those occasions, she met Sr. Augustina, a hardy German nun who served as the Abbey’s baker. Sr. Augustina herself was burdened by physical infirmity – a pronounced kyphosis, or curving of the spine, which, combined with her diminutive stature, meant that she could look most adults in the eye only by straining her neck upward. Nonetheless, Augustina was inevitably cheerful and generous, and if her health bothered her, you’d never know it. Always quick with a wink and a mischievous grin, she was also known to keep bags of her homemade cookies at the ready for distribution to visitors, especially children.

For my mother, Sr. Augustina was an especially welcome relief, and they became friends in no time. It was an odd friendship, I suppose – a cloistered Benedictine nun and a Protestant suburban homemaker. As far as I know, Mom never went to Mass at St. Walburga’s, nor did she participate in the Divine Office or any other formal spiritual exercises. She just went to chat with Sr. Augustina, and the nun would hold my mom’s hands and stroke them. On the surface, they had little in common beyond a shared faith and the experience of physical ailment, but that was plenty. Tears flowed abundantly, as did the prayers I’m sure.

“Almost always the individual enters suffering with a typically human protest and with the question ‘why,'” Pope St. John Paul wrote in Salvifici Doloris. “Nevertheless, it often takes time, even a long time, for this answer to begin to be interiorly perceived.” And what are the outlines of that answer? The Pope offered insight that is both compassionate and revolutionary:

It is suffering, more than anything else, which clears the way for the grace which transforms human souls. Suffering, more than anything else, makes present in the history of humanity the powers of the Redemption.

Still, my mom wouldn’t have been interested in the Pope’s insights. All she knew was that she was suffering and afraid and angry at her God. That’s why Sr. Augustina became such a treasured confidant, for her calm, soothing demeanor assured Mom that, even though the disease wasn’t going away, there was still meaning in life – that Mom wasn’t, and would never be, irrelevant. If nothing else, Mom’s reception of the ministrations of others made present the reality of Christ in yet another little corner of the world. And that’s precisely in line with the vision of Pope John Paul who was well aware that the suffering person

feels condemned to receive help and assistance from others, and at the same time seems useless to himself. The discovery of the salvific meaning of suffering in union with Christ transforms this depressing feeling.

In a way, Sr. Augustina helped my mother – and those around her – to see that God wasn’t in the business of choosing saints to endure hardship. Instead, He allowed hardship in general to help make us all saints and, in so doing, save the world. “Those who share in the sufferings of Christ preserve in their own sufferings a very special particle of the infinite treasure of the world’s Redemption,” John Paul notes, “and can share this treasure with others.”

And this treasure-sharing happens even when we resist it and rebel. He’s no idiot, this God we worship. The second Person of the Trinity is intimately familiar with corporeal existence and pain and agony, so He is aware that suffering, physical and otherwise, stinks. Sure, we want to get healed, and He gets that. Saints, though! Saints! We follow a crucified God, so how can we be surprised that suffering is part of what draws us closer to Him. It’s what shapes us into what He would have us become: Holy, despite our flaws and weaknesses, conformed to His likeness through our own versions of His Cross. Crucified! And so, saints!

My mom, a resolute Calvinist steeped in solid anti-Catholic Masonry, fixed her eyes on the beaming face of a saintly Pope and sobbed. They stood there for a moment, the Vicar of Christ and my ailing Protesting Mom, a tiny, tight circle of revelatory love. No words were exchanged, but the communion I’m told was palpable. Then, the Pope released Mom’s hands, gave her a blessing, and continued on his way.

Mom died within a couple years of that encounter with John Paul, and then the Pope died a couple years after that following his own valiant struggle with chronic illness. Maybe their paths have crossed on the other side – who knows? If so, I couldn’t pick better background music for that moment than the Wesleyan hymn we sang today at Mass:

Made like him, like him we rise, Alleluia!
Ours the cross, the grave, the skies, Alleluia!

Thanks, Mom, for your example of courage and perseverance. Rest in peace.
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A version of this essay appeared on Crisis.