“I Serve a Mighty God Who is Using This Suffering for a Purpose Greater Than Myself”

By blogging with his eyes, the former youth minister suffering from ALS continues to communicate Christ’s love.

ABOVE: Mark and Jan Herwaldt with their two youngest daughters. INSET: Mark Herwaldt uses Tobii Dynavox while watching a livestream of his godson’s college graduation. BOTTOM: Herwaldt attends a fundraiser with his family.
ABOVE: Mark and Jan Herwaldt with their two youngest daughters. INSET: Mark Herwaldt uses Tobii Dynavox while watching a livestream of his godson’s college graduation. BOTTOM: Herwaldt attends a fundraiser with his family. (photo: Multiple)

Mark Herwaldt of Sugar Grove, Illinois, has been recording some of the important moments of his life that occurred before ALS left him only able to communicate with his eyes two years ago.

But as the 57-year-old retired youth minister who can no longer move his limbs, speak or eat on his own seeks to keep God at the center of his life, the moment he’s focusing on is the present moment.

“We are not wishing to be somewhere else or with someone else,” Herwaldt said recently. “God gives us only so much time. He places us in all kinds of situations or with specific people. We need to be present to the moment at hand.’

Through the responses to interview questions he composed with a device that uses his eye movements to form words, Herwaldt described his life, writing, prayer and how God is showing him the power of offering up his suffering for others.

In early 2017 Herwaldt was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known Lou Gehrig's disease, which causes the death of neurons that control voluntary muscles. By March 2018 he had lost movement, speech and the ability to feed himself. He now relies on the care of his wife, Jan, and their five adult children.

In October 2017, when he lost the use of his hands and his voice, Herwaldt started using a device called the Tobii Dynavox eye tracker which enables him to read and communicates both through text and voice on the internet and his cellphone.

The device produces speech using his cousin’s recorded voice because by the time he began using it, Herwaldt had lost the ability to speak, Jan said. The eye tracker has helped with Herwaldt’s care, as he can communicate better with doctors and caregivers, she said.

Herwaldt didn’t have much trouble gaining control of the device’s cursor but his sitting position each day affects how well his eyes calibrate with the device.

“The hardest thing was realizing that I have to look away or click off the keyboard when I wanted to pause because the eye gaze follows every move of my eyes,” he said.

Praying to the Holy Spirit gives him inspiration to write, which Herwaldt said can be very tiring. “Then I just type and worry about grammar and spelling later, a sentence or two end up somewhere else. I would look back later in amazement about how God seemingly wrote the post.”

Even with the challenges of composing and editing, he posts frequently on Facebook, including Advent reflections on the life of St. Joseph.

On the blog he started in 2017, “Confessions of a Catholic Youth Minister,” Herwaldt is chronicling his life and career in the Rockford and Joliet dioceses. The blog continues to reach youth, youth ministers and many others. Some of the youth he worked with before leaving youth ministry two years ago are now in college, but they continue to follow his posts and stay in touch, he said.

Herwaldt works on several posts at a time about different periods of his life and work experiences. He starts each post with an idea and stories he wants to share. A common thread has been reliance on God, who often blesses him and his family through other people.

 “I think God is telling me ‘I got this’” he said. “Through the help of family, we were able to buy our first home which had to be renovated so I could live in it. Many people helped to work on the house. Through the hands, feet, and voices of other people is how I hear God’s voice. I have many special people in my life.”

Prayer has long been a regular part of Herwaldt’s life and now he talks to God all day, praying a decade of the Rosary while his wife is getting him out of bed in the morning.

“I find it hard to pray while in pain and it is painful to get ready for bed,” he said. “I worked on a retreat program while in college and learned to hear God's voice as a quiet whisper in my head. I can be in a meeting or in front of teens giving a talk and the Holy Spirit would give me an idea to share with the leadership or a story to share with the teens. Since the beginning of this ordeal I have experienced silence on the part of God.”

Herwaldt believes Jesus has used his suffering to impact people more than he can comprehend — by making him weak, he said. He offers his suffering for anyone who asks for his prayers. The Lord is also giving friends and family the opportunity to grow in holiness by serving him.

“This has been a crazy experience with God blessing us through cards, donations, gifts and visitors,” he said. “I have been anointed over 20 times by various priests that I know. I have been prayed over with a monstrance on my head either by a deacon or a priest so many times that I have lost count. I have had many hospital visits. If I post something on Facebook asking for extra prayer over a hundred people would reply. It has given me great joy!”

Even so, Herwaldt said he continues to work on his own anger. Despite wanting to love and serve God he admits that sometimes he mentally yells and screams instead.

Since ALS manifests itself differently in each person, Herwaldt doesn’t know what the future will bring. He continues to take a drug that may be slowing his decline, he said.

Herwaldt is well aware of how much ALS has taken from him but he focuses on what God has given him: the ability to offer up his suffering for others.

“I can no longer hug and kiss my wife,” he said. “I can't hug my kids nor tease them. I can’t serve them but be served. I can no longer minister to people and be present to them in the way that I am used to doing. I can only offer up my suffering for them. I pray that God is using it in powerful ways. I can’t walk, talk, sing, eat, drink, or scratch my nose. I ask God to heal me every day not for my sake, but for my family. Yet, I serve a mighty God who is using this suffering for a purpose greater than myself. I will run the race to the end and await the feast with a fork in my pocket. Well, you have to save your fork for the dessert.”