A Million Steps for Scleroderma

My name is Jim Hines. I am a retired aerospace engineer and lecturer/ instructor. But importantly I am also a supporter of my wife Roberta of 49 years who is living with scleroderma. She has endured the trials and tribulations of the disease throughout her life starting with Raynaud’s, to gastric, pulmonary, and other issues. She has had multiple surgeries from the developing disease, yet remains positive, optimistic and always ready to help others. Roberta and others who have Scleroderma inspire me. I have met many people in the Orange County support group she co-leads and at other Southern California Scleroderma Foundation events I have attended who are remarkable in dealing with their struggles. 

When Roberta and I were on vacation in Spain and Portugal, we saw hikers who were on a Camino de Santiago pilgrimage. We found out that the pilgrimage is also known as The Way of St James, the apostle and patron saint of lost souls, and is a 1000 year's old UNESCO’s World Heritage Site. “The Way” is understood as an inner journey, an experience that delves into oneself, in a search for balance and well-being. As I watched the pilgrims on their spiritual journey to Santiago de Compostela, they reminded me of the struggles that each scleroderma patient goes through day by day and their journey in paving their “Way”.  Therefore, I thought, as someone who is able (even though recently have had both knee and hip replacements), what better way to pay homage to those who have Scleroderma especially when we had just participated in the Stepping Out to Cure Scleroderma program then to hike the Camino de Santiago. I am reminded that life is a day-by-day journey for the pilgrims as well as those who have scleroderma. 

The Camino de Santiago is not a single route but many routes, as symbolized by a seashell, to the city of Santiago de Compostela, recognized as the burial place of Saint James.  To date I have completed 3 Camino routes - in 2021 the most popular Frances's route, in 2022 the Portugues Central and Finisterre (translates to “the End of the World”) routes, and in 2023 the del Norte route. (Figure 1) Last year’s Camino – del Norte route, was over 512 miles and started in Irun near the border of France. The route took me across the beautiful northern Spanish coast. I ended my journey in back in Santiago de Compostela on July 25, 2023 - in time to again enjoy the Feast of Saint James. This year’s route, Camino de la Plata or the Silver route, which will be in September is the longest yet; starting in Seville it heads north ~620 miles to Santiago. (Figure 2).