When Staci Lowe’s younger son, Austin, 4, was 18 months old, a suspected stomach virus sapped his strength, landing him in the ICU at Children’s Hospital of Michigan in Detroit. However, Austin’s weight loss, pale color and lethargy were not the result of a nasty bug, but of a gastrointestinal bleed from his severe hemophilia A. “He was just barely hanging on,” Staci says. “They had to give him blood transfusions. It was really scary.”
Staci, 32, and her husband, Alex, both on staff at The Woods Church of the Nazarene in Warren, Michigan, then engaged their faith network. They called their church and members of their couples group. “Instantly, people were praying for us,” Staci says. Two of their pastors came to the hospital to pray in person. “It was clearly all in God’s hands.”
For many people in the bleeding disorders community, spirituality helps them cope with a newly diagnosed child, remain calm during a trip to the ER, manage an inhibitor, or juggle hemophilia, hepatitis and HIV. By expressing their spirituality they find comfort, hope and peace in the midst of a chronic health condition.
Spirituality and Health
Spirituality has many definitions. “The definition I like to use is how people find meaning and purpose in their life,” says Christina M. Puchalski, MD, FACP, director of The George Washington Institute for Spirituality and Health and professor of medicine at George Washington University in Washington, DC. That search can be fulfilled through belief in God, family, naturalism, humanism and the arts, she says.
Spirituality plays a significant role in a patient’s understanding of sickness, says Puchalski. Glen Bronstein’s Jewish faith helps keep his youngest child’s hemophilia in perspective. “Judaism views illness as part of a natural continuum of life,” he says. “Joy and happiness have their corollaries: illness and physical vulnerability.” Bronstein, 50, is an executive at a global financial services company in Manhattan. He lives in New Jersey with his wife and four children.
Jack, now 8, wasn’t diagnosed with mild-moderate hemophilia A until age 2 ½, after he had a severe bleed. Glen clearly saw his duty, which stemmed from the tenets of his faith. “I reacted to it by prioritizing my son’s health, seeking treatment and praying to God,” he says. “It’s my responsibility to act as a partner with God in dealing with it.”
That partnership shifts the burden from “me” to “we.” Patients with faith seem more calm and peaceful, says Ellen Kachalsky, LMSW, ACSW, Hemophilia and Thrombosis Treatment Center, Henry Ford Health System, Detroit. “It may be an issue of it’s out of their control, but they can leave it in somebody else’s hands. Many have an attitude that they’re not given more than they can handle.”
Religious involvement helps people cope with illness in several ways, says Harold G. Koenig, MD, director of the Center for Spirituality, Theology and Health at Duke University Medical Center in Durham, North Carolina. A faith community provides social support, where people can receive and give back, he says. Then there’s the psychological aspect of dealing with an illness or disease that is out of a person’s control. “Their religious beliefs, which ground the suffering in a sense of meaning and purpose, help people cope.” Third, religious doctrines can deter patients from harmful actions. “People who are more religious are less likely to drink, smoke and do self-destructive behaviors in trying to cope with the chronic illness,” Koenig says.
Spiritual Distress
The opposite of spiritual health is spiritual distress, the sense that life has no purpose, hope or connection. A 2001 study in Archives of Internal Medicine by Koenig and colleagues showed that spiritual distress can be deadly in the elderly. “Those with spiritual struggles, or spiritual distress, die significantly more quickly, independent of their physical health, social support and even mental health,” he says. Wrestling with profound spiritual issues alone, such as unanswered prayers for healing, or feeling abandoned by God or deserted by one’s faith community, are harmful. “Those spiritual struggles cause some kind of internal turmoil that physiologically alters them.”
Vaughn Ripley, 44, of Brunswick, Maryland, sank into the quicksand of spiritual distress at age 19. Several crises hit him all at once—dropping out of college to tend to a bleed from his mild hemophilia A, breaking up with his girlfriend and experiencing his parents’ separation. Then came the most crushing news of all. “My doctor told me I had HIV and that I had fewer than two years to live. That really spiraled me down,” says Ripley, an executive with Emergent, an IT sales vendor integration company in Vienna, Virginia.
For the next two years, Ripley drank and did drugs daily. Tired of waiting for death, he decided to act. The night before his suicide attempt, Ripley did something he hadn’t done in years. He prayed. “My prayer started out, why me? But it very quickly turned to anger expressed at God.” At the end, he gave God an ultimatum. “I am going to kill myself unless you respond to my prayer,” Ripley threatened.
The next morning, as Ripley was preparing to end his life, a friend from his church-going days as a child showed up at his door. The friend said, “I don’t know why, but I just got a really strong feeling this morning that I needed to seek you out.” The uncanny timing and the urgency were supernatural, says Ripley. “This was whatever God you believe in sending one of His servants to answer exactly what I had asked.” After that lifesaving intervention, Ripley left the party house, and kicked booze and drugs out of his life.
Tests of Spirituality
When faced with pain, illness or disability, it is normal to ask deep questions about life and faith. Those questions can become even more pointed when a child is affected. “There is no more stressful situation than dealing with a child who is sick,” says Koenig. “That’s the situation where parents are asking God: Why me? Why my child? Why my family?” Chaplains and trained medical professionals can help families sift through those questions. (See “Spirituality and Medicine.”)
When Austin was diagnosed with an inhibitor, the Lowes’ faith was tested. “We had to decide: Are we going to stay mad at God for allowing us to have to deal with this and for allowing Austin to go through this? Or was it going to make us stronger in our faith?” says Staci.
Asking questions can be cathartic, but there needs to be resolution. “I would encourage people to look at what is their meaning in life,” says Puchalski. “It really has to do with how you find hope in the midst of suffering.” The Lowes’ answer to Austin’s inhibitor diagnosis came in the form of seeing God in a new way. “We had to rely on Him so much more to protect Austin.”
A study in the 2006 Journal of General Internal Medicine on patients with HIV/AIDS found factors that fortified patients. “Spirituality, broadly defined, was associated with a stronger will to live,” says Puchalski, a co-author. Nonorganized religion, such as prayer and belief in God, and optimism also buttressed patients’ will. In focus groups, the patients told researchers: “Prayer helps. I know what’s important in life. I want to make a difference.” “Very spiritual themes, actually,” Puchalski says.
The Power of Prayer
Prayer helps people offload the burden of a health concern onto the shoulders of a higher power or God. It is central to many faiths, including Christianity, Islam and Judaism. Although there are few studies proving prayer works, Puchalski says experience trumps data. “People know they feel better when people pray for them.”
For the Lowes, prayer relieves stress. “To be able to say every day, ‘God, these kids we give to you. Protect them. Help them stay healthy,’ helps get that worry off our chests,” Staci says.
One prayer that is particularly poignant for Glen Bronstein is the Mi Sheberach. The cantor pauses during the service, allowing congregants to say the name of a loved one who needs prayers for health or healing. On several occasions, Glen has uttered Jack’s name. “Reciting that prayer always endows me with a sense of strength, a sense that I am not alone,” he says. “I feel very close to God when I recite the prayer. I feel very close to my son. I feel close to my community.”
Intercessory prayer can be calming. “When three people from my church would come out and stand around me, putting their hands on my head and saying a prayer and giving me a blessing, a peace settled over me,” says Ripley. Although he opposes organized religion, he still sees its validity. “There’s definitely a power associated with that kind of thing.”
Staci brought Austin and his older brother, Brady, 7 (who also has severe hemophilia A), forward for prayer and anointing with oil during a healing service at her church. “We asked the pastor to pray that they would be healed of the hemophilia,” she says. Although nothing’s changed in the boys’ diagnoses, Staci remains hopeful. “Even if complete healing doesn’t happen, we know God has a perfect plan for these boys.”
Meditation for Mind and Body
“Meditation, the act of focusing on something repetitive, be it a prayer or a word or a breath or a phrase, does seem to have benefits,” Puchalski says. Those benefits were identified through studies conducted by Herbert Benson, MD, director emeritus of the Benson-Henry Institute for Mind Body Medicine at Massachusetts General Hospital in Boston. His research showed that meditation can not only lower a person’s heart rate, breathing rate and blood pressure, but also reduce muscle tension. This so-called “relaxation response” is often found in people who are spiritual.
Ripley meditates daily. “I do it to connect myself with a greater power, whatever this power is,” he says. When he’s icing his knee after a bleed, he meditates. “I look into my knee, focus on the bleed and kind of control it. I think of that as a spiritual thing.” Further, meditation makes him mellow. “It’s very stressful having a bleed and dealing with all the stuff that goes along with it,” says Ripley. Taking time to sit still quiets him. “I feel energized, in a way, more comfortable. Then I can fall into a more tranquil state and be at peace.”
Caring Community
The community aspect of spirituality can be a powerful magnet. Gathering in a group reminds people with bleeding disorders that they are part of something bigger. “If they’re attending services, there is a comradeship, a feeling that they’re not alone,” says Kachalsky. “They see that there are other people out there with similar issues.”
The Lowes meet regularly with a few other families from their church to eat dinner, study, talk and pray. Spending time together has drawn them into a tight-knit group. “Sometimes they are closer than our biological families, who don’t live close by,” Staci says. “They all know what our family is going through, and pray for us and our situation.”
Although he is not religious, Ripley attends a Methodist church with his wife and two young children. He finds the congregation friendly. “I like the community feeling. There are happy people there, and they are always very welcoming.”
Coping with a bleeding disorder can be difficult. There are complications to face and crises that arise without warning. But spirituality can help crystallize what life is all about. “Dealing with heavy-duty questions in life can be a blessing,” Puchalski says. “That’s where the spirituality plays a role. All of a sudden, the important things become so clear, and actually, life is maybe better in a sense.”