A conversation with John Paine: I’ll keep my ALS
My Faith Votes recently spoke with John Paine, author of The Luckiest Man: How a Seventeen-Year Battle with ALS Led Me to Intimacy with God. 18 years ago, Paine was diagnosed with ALS or Lou Gehrig’s disease, a degenerative neural disease that has progressively left him paralyzed from head to toe and will eventually take his life. ALS changed every facet of his life, causing daily challenges and physical suffering, but Paine has refused to be crushed in spirit or even to despair of life itself. On the contrary, he credits his experience living with ALS as the cornerstone of a deeply intimate relationship with God. Take a few moments to watch the powerful interview.
John Paine recounts that the journey through ALS can be characterized by pain and suffering, but suggests there’s another aspect of the journey if one looks for it. “On the one hand is a journey of death,” he says, “on the other is a journey of life, and I promise you life outweighs death.”
Paine’s experience with ALS has produced a cherished victory — deepened dependence on and intimacy with God: “It’s been a journey of trust, of vulnerability and of communication with God, one that has produced a closeness, a wholeness, and a knowledge that I am fully loved and accepted and that I don’t have to be or do something different to earn that love.”
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People often put up walls or emotionally distance themselves from others, including God, in an attempt to protect themselves from being hurt. To practically cultivate intimacy with God, Paine encourages others to practice vulnerability. “How can you be intimate if you are displaying a false self or withholding your emotions?”
Similarly, it seems one of the primary goals in our world today is to limit pain and suffering and to increase pleasure and comfort. We asked Paine about his unique perspective on suffering given his 18 year battle with ALS.
He told us that Christians can easily mess up their theology if they’re not careful because too often we associate negative circumstances with God being displeased or even punishing us and, conversely, if everything is going great we must be in God’s favor. Paine is emphatic: “I live in pain and suffering, but I am not out of favor with God. Suffering is not fun. As I sit here in this chair I’m in pain, all I truly want is out of it, and yet, what I’ve learned is that if you’re going to live in this life there’s no avoidance of pain and suffering.”
Paine points out that there’s one question God does not answer, but it’s always the first question people ask when faced with suffering: “Why?” Instead, he says people should ask, “What?” There is always something God wants to do in or through a person in the midst of their suffering.
Given the intense pain associated with diseases like ALS, it comes as no surprise that “right-to-die” advocates are pushing for greater access for people suffering from terminal illnesses to choose to take their own lives.
Paine himself says its tempting to think about that option “when you are hurting most days with an intensity that overwhelms you.” And he has thought about suicide before: “Quite frankly, I’ve never met an ALS patient that hasn’t talked about that option — this is not a fun disease to endure.”
If choosing to live or die was based solely on pain versus comfort, Paine says he would prefer death right now. The reality is, though, that “the spiritual life I am able to live far exceeds the discomfort. I can tell you that I would love to get out of this chair, to hold my wife’s hand, to hug my grandchildren, but if that meant having to go back to my old ways of experiencing God, my old relationship with him, I would not do it. I’ll keep this disease to have the relationship I do with God.”
Jason Yates is CEO of My Faith Votes, a nonpartisan movement that motivates, equips and mobilizes Christians in America to take action to transform our communities and influences the nation with biblical truth. By partnering with national faith leaders, My Faith Votes provides resources to help Christians Pray, Think, and Act to create an America where God is honored in the public square. Gov. Mike Huckabee serves as the organization's honorary national chairman.
