Hereditary Spastic Paraparesis (HSP) is classified as a rare disease with only a handful of people per 100,000 contracting it. That’s not much comfort to Helen Kienlem, because the first word is operative — it runs in families. The seventh of the eight children of Joan and John Kienlem, she is one of six in the family to inherit it.
It’s a degenerative neurological disease, in that it starts out fairly mild, but over time slowly robs the person of the use of his or her legs.
“Little by little you lose the ability to walk,” said Kienlem, who tried never to let it hold her back, growing up first at Our Lady of Lourdes School in the Overbrook section of Philadelphia, or Archbishop Carroll High School or at Temple University where she earned a bachelor’s degree in communications.
“It really hasn’t stopped me from doing things,” she said. “I walk, I drive. There was never anything I wanted to do that I couldn’t do. I wasn’t interested in sports, but I probably could have done some.”
For most of her working career, she worked as a pre-school teacher in day care centers, but recently concluded the disease has progressed to the point where she can no longer do it, so she is retraining as a paralegal at Peirce College because this is work she can do in an office setting.
In addition, she is the regional ambassador for the Spastic Paraplegia Foundation, an organization that reaches out to those with spastic paraplegia.
“People don’t really understand everything about it, and there are so many things to learn,” she said. “It’s important to keep abreast with everything that is happening in the field.”
Meanwhile, she is active at her parish for the past five years, St. Margaret in Narberth, where she and her sister Kathy are the parish representatives for the Persons with Disabilities group, sponsored by the archdiocesan Department for Pastoral Care for Persons with Disabilities.
“The Archdiocese is really attentive to people with disabilities and how to accommodate them. Sister Kathleen Schipani (administrator of the archdiocesan Department for Pastoral Care for Persons with Disabilities) is great.”
A recent highlight for Kienlem was participating in the archdiocesan Liturgy for Persons with Disabilities and the Deaf Community held March 10 at the Cathedral Basilica of SS. Peter and Paul with Archbishop Charles Chaput as celebrant and homilist.
This was the first time the Archbishop celebrated the annual Mass, and he received a favorable review from Kienlem.
“He was terrific, he gave Communion to everyone and he just seems to understand people with disabilities,” she said.
At both Our Lady of Lourdes and St. Margaret, she has found every effort being made to welcome people with disabilities. “For example at St. Margaret, we have an elevator and the front pew is reserved for us, so we don’t have to get up to receive Communion,” she said.
“Church is very important to me,” she added. “God is very important. I don’t ask Him why I have HSP; I believe what doesn’t kill you makes you stronger. I don’t know the reason I have this, but I know He has a reason.”
Lou Baldwin is a member of St. Leo Parish and a freelance writer.