Full Interview of the National Catholic Register blog post

Questions for National Catholic Register blog post

written by Susan Klemond  you can find the blog post at  https://www.ncregister.com/

You live in Sugar Grove?

We have have lived in Sugar Grove, Illinois since 2003.

You have five children?

Yes, four girls and one boy. Bethany, Rebecca, Johnmark, Abigail, and Elizabeth.

My wife, Jan, homeschooled four of the five, two through high school and two through eighth grade, so far, we have one with a Doctorate in Mathematics, one with a Masters in Library Science, one with a Bachelor’s Degree in Business Automotive, one who will earn a Bachelor’s Degree in Marketing in May and our youngest just started college and is studying Fashion Design. Since Jan was a home school teacher full time, I worked extra jobs to make up for the lost in income.Some years, I delivered Chicago Tribune newspapers, I taught two of the Theology classes at St Francis High School for one school year, for several years I recruited attorneys for possible positions throughout the country for a small firm in Batavia that some of my friends owned. I was also a consultant for the Diocese of Joliet Youth Ministry Office where I helped plan and lead youth rallies, camps and leadership conferences .




Did it take a while to get used to writing with eye gaze?

No, within the first couple of minutes I was able to get control of the cursor. 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. Every day is a new challenge because I am sitting differently in my chair. Sometimes I have to recalibrate several times a day.


I saw a video about writing in cursive with the eye gaze technology. Do you do that or is your writing more like typing (letters already formed)?

With this disease every person progresses in different ways. I was diagnosed in January of 2017, by March of 2018 I had lost the ability to move my arms and legs, the ability to speak and to eat. Since I quickly lost the use of my hands and I did not have this device until October 2017, I started with eye gaze technology. Other people with ALS might not be able to talk but can still use their hands and their device is a touch screen. I use google docs to write documents like this one. My blog is written on the blog site.


Besides writing, does the technology enable you to use the internet and read e-books? Can you do things like get your family/caregivers’ attention?

I have access to the internet and the Tobii Dynavox is also linked to my cell phone so I can text and I can make phone calls. Unfortunately, I can not receive pictures and I can not do group texts. I have read several e-books such as St Faustina diary. I have a goal of reading the whole Bible. I finished the New Testament and I am in the middle of the first five books of the Old Testament . I am reading the biography of St John Paul II. I am also reading the Introduction to the Devout Life and several other books. My wife Jan is my caregiver. I do have an alarm on my device but I usually am not left alone. We bought a new house with an open concept so in the position that we park my chair I can be seen from the kitchen and kitchen table.


Is writing tiring?

Yes, if people come over to visit . It can be very tiring. If I talk to someone it is the same action to me as creating a blog post. My eyelids seems to have a mind of their own . They just close.


How long does it take you to write a post?

Depends on the post. I wrote one for a friend of mine who was running a mission trip to West Virginia. I had a theme to work with so I was able to get it done within a week. I am working on several posts at a time. Each post has a time period or a church that I worked. When I feel like I have done enough with the topic then I will spend more time editing it. The whole process can take several months. I sometimes have several days where I cannot get a good eye gaze calibration so even communication is difficult. It has taken me several days just getting a good eye gaze calibration to answer your questions. On top of that I have not felt well, so it makes writing more than difficult.



Do you find that you compose more in your head than as you write because of the effort it takes to revise and move sentences around or is that pretty easy?

I ask the Holy Spirit to inspire me. 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. I have been focused on the parishes that I served in and the experiences with God that led me to be a youth minister. So, I start my post with an idea and what stories I want to share .



Is there a chance you could eventually lose the ability to use the eye gaze technology?

Yes but it is remote. The people on ventilators can be prone to their eyes always open. I am not on a ventilator but a noninvasive ventilation bi-pap machine with a nasal mask.


Are you still taking the drug Radicava or any other new drugs? Is it helping?

I was on Radicava but the insurance company who initially approved it, denied it in the new year. I was on it for about four months. My breathing was quickly going down to the point of planning my funeral. I also started taking Riluzole which was used in the studies of Radicava. Since January of 2018 my breathing has been stabilize. I don’t know if it was an act of God or the medication .



Did you write much before your illness?

Not really, just the talks that I would give for youth ministry programs.


What is your prayer like? Do you hear God differently now?

I opened my life to God after college and I have used a variety of prayer over the years. Mostly, I talk to God throughout the day. For several years, I had been praying the rosary while driving to and from work, several times a day. Now I try to pray a decade while Jan gets me out of bed and into my chair. I find it hard to pray while in pain and it is painful to get ready for bed. I worked 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. Now I hear God through the actions of other people. My favorite verses in the Bible are from Matthew 6:25-34 “Don’t worry.. but.. Seek first the kingdom of God.”During the last three years, daily I have experienced God blessing our family through the action of other people. I think God is telling me “I got this”. 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 voice of other people is how I hear God’s voice now . I have many special people in my life .



You quit your youth ministry job at Corpus Christi in August of 2017, correct? Were you a youth minister a total of 27 years at different churches?

I had to retire. I couldn’t even answer the phone anymore. Starting in July of 1990, I worked as DRE and Youth Minister for Holy Angels Church in Aurora, IL for twelve years. Starting in July of 2002 I worked for the Diocese of Rockford as the Director of Youth and Young Adult Ministry. I worked for the diocese for almost two years. They decided not to plan events for youth so they let me go. Starting in January 2003 I worked part time as the youth minister at St Pius X Parish in Lombard. IL until July of 2005. Starting in July of 2005 I worked at Corpus Christi as Director of Youth Ministry. Later, I was given the additional responsibility of adult ministry which included RCIA, Bible study and parish mission . I was also a consultant for the diocese of Joliet Youth Ministry office where I would help plan and lead various events including rallies, summer camps and leadership conferences. St. Pius and Corpus Christi were in the Diocese of Joliet and Holy Angels was in the Rockford diocese.


Have you been able to minister to youth through your blog? What is the biggest thing you’ve wanted to convey to them? How have they responded to your illness?


Originally, I wanted to chronicle the way God led me to become a youth minister especially for my family and I wanted to share the highs and lows with other catholic youth ministers. It became obvious I was reaching all kinds of people including the youth. People who I had in my program have read it and have made comments. I have been retired for two years now, which is a long time in youth ministry. Most of the teens that I worked with at Corpus Christi are in college or beyond. They have commented on the blog and some of the stories I had used in talks to them previously.


What keeps you going? Is living by “J.O.Y. Jesus Others You” what gives you joy?

God gave me a positive attitude and I have experienced joy in ways that I was not expecting. I am experiencing the JOY backwards, Jesus is using me to give people a chance to serve Him by making me weak. Because of my suffering and faith , I was the cover story of our diocesen magazine. From that story came many God moments. For example, I received a note from the personal secretary of our former Bishop Romeo Blanchett also died from ALS. She shared the process that they went through to write letters to people, in which he used facial expression to show which letter to choose for each word that he wanted written. It was pretty special to hear from her. I also received a note from Bishop Conlon who is the current bishop. I am experiencing the JOT backwards.


This has been a crazy experience with God blessing us through cards, donations, and visitors. I have been anointed over twenty times by various priests that I know. I have been prayed over with a monstrance on my head either by 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! The youth have been extremely supportive. The Knights of Columbus of Corpus Christi Church ran a major fundraiser for us with the help of the youth group and my family. One awesome young adult leader organized a team of people for the ALS walk. We are members of Holy Cross Church in Batavia and they allowed my family to take the lead on an additional major fundraiser. The people of Holy Angels, Corpus Christi, and Holy Cross have all been a huge help to us. All of these have been a source of joy .


I worked for the church for several decades and I never could tell the impact, with this disease I have been doubly blessed. For example, the people of Corpus Christi have not only been generous with supporting us financially but in volunteers who helped to renovate our house and help us move and most importantly through prayer support. Every SundayMass they are praying for me and three times their traveling rosary group has come out to our house to pray with us! Our extended families have loved us in every way possible and our friends have been there for us in every possible way, time, talent, and treasure. Every time our pastor from Holy Cross sees me, he stops what he is doing and prays over me. I have a great group of friends from youth ministry who have supported us and faithfully pray for us . I have a great friend who has been with us in every aspect of the journey including doctor appointments and hospital visits. I receive almost daily texts from him. When he is speaking, he can be in front of fifty or ninety or hundred teens and he has them pray for me. Finally and most importantly my children have been our joy and have been totally awesome young adults. I think I could write pages about what they have done to express love each in their own way making this journey easier. Then, Jan my soul mate and rock, she has been living a life of sacrifice and heroic virtue. She has been my primary caregiver and advocate to the doctors and nurses. I started a list of hats that she wears and it is completely exhausting. She is my hero. all of it is my joy. It is why I have to write more posts .


You wrote that with God nothing is wasted. Do you see a purpose in your illness

Yes, God is giving people a chance to serve me and my family. In addition, it has given me a chance to offer up my suffering for anyone who asked for prayers. I let the person or family know that I am doing offering my sufferings and it has a dramatic impact on them, bringing some to tears. It has brought my family closer together. It has brought my extended family closer together. Unfortunately it has had a dramatic impact on my brothers and sisters since both of my parents died early in their fifties. So it is hard to come to grips with a God who would allow this disease to impact their youngest brother! It is unknown how they will react when I die. I have had to battle my own anger with God which is still a work in progress. I try to be an example to them. God has used the disease in ways that I will never know .


Have you or your family considered compiling your posts into a book?

Yes but it will depends upon how many I get done. It has become more difficult to type a long time as you can tell with how long it has taken me to respond to you.


I especially liked the following sections from a couple of your posts. Could I quote from them or paraphrase (with attribution)? I will link to your blog but is it OK also to refer to any other posts?

Yes it is fine with me!


Suffering is complicated. Jesus uses someone's suffering to impact a myriad of people. For me, he has used my suffering to impact thousands of people in ways beyond my comprehension.


As much as I love God and want to serve him to my dying breath, I have yelled and screamed at God many times. I always turn back to him and ask for forgiveness. I have lost much over the last eighteen months. I can no longer hug and kiss my wife. 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 save your fork for the dessert.


When we have God at the center of our lives, we live in the present moment. We are not wishing to be somewhere else or with someone else. 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. We are to be present to the person in front of us and not texting someone else. Take a lot less pictures and soak in the moment.