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 itprayer 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.

Editor’s note: This essay was first posted April 19, 2015 on the author’s blog God Haunted Lunatic and is reprinted with permission. (Photo credit: James L. Stanfield / National Geographic)

Richard Becker

By

Richard Becker is a husband, father of seven, nursing instructor, and religious educator. He blogs regularly at God-Haunted Lunatic.

  • TERRY

    Thanks – we needed that. We ALL needed that.

  • publiusnj

    As Terry wrote: thank you.

  • Louise Riccobene

    When I saw the title of this article I almost didn’t read it because of painful memories. My mother-in-law died of scleroderma. It is an utterly horrifying disease which essentially turns a person into a statue. But I never once heard her complain as we all watched the disease progress, quite quickly in her case, and I watched it turn my husband into a saint as he cared for her until the day she died.

  • St JD George

    Should have saved this article for next week before Mother’s Day Richard, ha. Very touching, thanks for sharing. God does indeed work in mysterious way, and when he aids us (and we let him) in taking our blinders off, the beauty of his creation is all around to see, his people. I have seen the effects of the disease in a member of my wife’s family and know a little of the experience. Blessed are those who endure and never waiver in their faith, joyful for what they have.

  • Martha

    Oh, that made me tear up! :’) *sniff*

    A beautiful story, thank you for sharing.

  • Anthony Connor

    In 1986, here in Brisbane, Australia, I was privileged to act as a “gate usher” for Pope John-Paul 2 who arrived and celebrated a Mass for some 70,000 people in a sports stadium. I was able to get quite close to His Holiness and received a rosary and a picture of the Pope. Little did I know that I was actually close to a future saint! What a wonderful and remarkable man! This story revived those memories for me. Thank you.

  • michael ortiz

    Beautiful. Thank you for this marvelous piece. My protestant Mother-in-law also literally stumbled across JPII at a general audience in 1990, and he literally helped her to her feet. She said she’s never felt such peace. Still not in the Church of Rome, but perhaps, as with your dear mother, a seed was planted.

  • M;J.A.

    A good and providential topic , esp. for those who want to honor the memory of St.John Paul 11 and thus celebrate the upcoming Feast of Our Lady of Fatima , with deeper meaning , by .meditating on The Mother, esp. at The Passion ….She , through whom all graces are said to flow ..would it be that , The Passion was the occasion of the peak of the enemy’s use of hatred towards The Woman , that has manifested in so many ways, down through centuries , in great and small ways …
    one such ‘small ‘ yet not insignificant area being , the disappointments that can be , even in ‘good ‘ marriages ; there are articles that mention how good Catholic couples end up divorcing , because of unrealistic / premature expectations , of marriages being like the ‘ marriage supper of The Lamb ‘ , husbands , to be like unto how The Lord and His love for The Church …
    the accuser can use that very exhortation , to bring division , by allowing the virtue of hope, to be forgotten …the very virtue we see in The Mother ..who seems to have chosen to trust and hope, in the midst of all the animosity , very much directed at Her as well, by the enemy ….in the midst of the un certainity of not able to know what to expect the next moment , for Her Son ..but the hope that St.Paul sings about so well, gets exercised , in the Spirit .. which is too what we see, in St.John Paul 11 ,
    in his struggle against communism and efforts for Church unity , in his struggle in the midst of physical struggles , the virtue which we too , may be esp. Catholics are also called to exercise , possibly for the benefit of many others too, who have become victims of despair , such as in choices against life …or the counter to the virtue of hope , which would be sin of presumption , of trusting on one’s own ways !
    Even the two thieves left on the cross – were they too being given time, to repent and hope …which is too what at times one might have to use , in tough love situations , instead of misunderstanding love as occasion to promote greed , giving into which would lead to inviting deeper struggle for all involved , down the road !
    Using the time of waiting in hope , to help bring deliverance , such as for family lines and any one who is connected to the situation , asking for mercy on all ..Freemasonry involvement said to be an area that needs curse breaking prayers and all ..handing over whatever might be causing the knots of pain and suffering , in one’s life, to The Un doer of Knots , who knows what are the deep tie ups , in the hidden
    ribbons of life and its connections ..and even one good hearted , truthful person , blessed to do so, possibly to help many . such as , .Sr.Augusta mentioned in the article , the nuns and the priests who embody the same virtue of hope …even every expectant parent ..and all of us too , in the midst of our daily lives , given so many occasions , to hope and trust , in the goodness of God , present in and through others too ..and all of same embodied so well, in the Blessed Sacrament – the hope and love , in The Resurrected One , to whom we owe our endless gratitude .
    St.Mary Magdalene too – of courage and hope ..and The Lord appearing to her , as a Gardener , may be inviting us all too, to exercise that virtue of hope , like all good gardeners .. the month of May , time for roses and gardens and hope ..Our Father , giving us , so many occasions, to be people of hope , may be esp. also on behalf of those from whom the enemy has stolen that virtue !
    May St.John Paul 11 , our Blessed Mother , help us all ,to bring all , to The Lord , thanking Him, for giving the grace to trust and hope , in Him !

  • hombre111

    Magnificent. Simply magnificent. Praise God for this kind of writing.

MENU