It is good for me that I have been afflicted, so that I might learn your statutes. -Psalm 119:71
I can think of no one whom this verse would better apply to than Johnny Farese. For those who don’t know, Johnny was born with spinal muscular atrophy, an ailment which massively undermines an individual’s usage of his/her body and muscles (for more, please read here).
For Johnny, this meant that when he was younger he could sit up and get around in a self-operated cart. But for the majority of his life, including the 12 years that I knew him, he was confined to a bed. His body was so badly mangled, it was almost uncomfortable to look at him when you first met him. But any apprehensions you might have had immediately vanished when you got to talk to him and know him, and the special Christian that he was.
Johnny was born in August 1956, being one of seven children in a nominally Roman Catholic family. He was also one of three children afflicted by spinal muscular atrophy, including his older brother Bernie and their sister Tina, who died at the age of three (early death is very common for those with this ailment, as one of the symptoms is a weak immune system).
In Johnny’s young adult years, something happened that dramatically affected his life: his brother Bernie came to a saving faith in Jesus Christ. Bernie witnessed to and prayed for his family, and gradually some of them also came to faith in Christ, including sister Gina, Johnny, and their younger brother Paul.
Until he came to recognize Christ as Lord, Johnny lived in rebellion. But when he repented of his sins, it was dramatic: he gave up his sinful lifestyle, sought to regularly attend church, and became a devotee of the Bible and good Christian books–most especially the Puritans.
In the early 1990s, Johnny was still living at home. His parents had separated for a time, and so his mother was his sole caretaker. Paul had just gotten married, and he and his young wife, Janis, were visiting. They quickly came to realize how difficult it was for their mother to care for Johnny alone, and so they took him in, barely three months into their own marriage. Not only would they take care of him through his many ups and downs (mostly downs, given the fragility of his health), but two of Paul’s and Janis’ four children would have special needs as well–one with speech problems, while their youngest, daughter Kayla, has Down’s Syndrome.
Through it all, Paul and Janis cared for Johnny and their own children with the help of the pastors and members of Emmanuel Baptist Church. Caring for him was not easy. To give just one example, Johnny could not swallow his own saliva–something which you and I do without thinking about every day. So for many years, someone–usually Janis–would have to go into his room several times a day, take a small tube, place it into his mouth, turn on the machine it was connected to, and it would suck out his saliva. Thankfully, the Fareses were eventually able to find a way for Johnny to do it himself through computer voice activation. But until then, helping Johnny to spit the saliva out of his mouth was just one of the many physical needs he had that needed to be met every day.
All of that said, if anyone ever had an excuse to feel sorry for himself, it was Johnny. But he didn’t. Instead, he was very active in the life of his church. He ran a twice-monthly Bible study using R.C. Sproul’s “Dust to Glory” series, which could feature as many as 20 people gathered in his room. He also mentored several people through their own trials, and he was not afraid to confront those close to him if he feared that they might be straying into sin. I should know, because there were a few times where he confronted me; never in anger, but always firmly and in love.
I met Johnny for the first time in 2002 when I began to attend Emmanuel Baptist Church (I was a Reformed Baptist at the time). He was in his portable bed at church, and because of all of the people around, I had to strain a little bit to hear what he was saying. But he invited me to his Bible study, and it was there that our friendship began. I would attend his Bible study, and often visited him on Saturdays, where we would talk about our many shared interests: the Bible, the Puritans, and baseball (since he was from Boston, he was an avid Red Sox fan).
Early on, I would go to see him, thinking that a visit might somehow brighten his day. I’m not sure what affect I had on him, but I always left thinking that I had been blessed rather than him. He was a true friend and brother in the Lord who always knew what to say, and whose speech was saturated in Scripture. He was also the living personification of Paul’s statement in 2 Corinthians, “For when I am weak, then I am strong.” When you were simultaneously confronted with his physical condition, his Christlike humility, and his personal accomplishments, you could not help but be personally convicted by the shallowness of your own complaints and the lack of your commitment to Christ. Without him saying a single word of rebuke, he helped me numerous times to keep my spiritual bearings, and (to borrow from William Carey) attempt great things for God and expect great things from God.
Johnny on TV
In 2005, I was working at Coral Ridge Ministries as a radio producer, and progressing through seminary. I had told my boss, Chuck Burge, about Johnny from time to time. One day, Chuck said to me, “Why don’t you go tell our TV department about Johnny? They might do a feature on him.”
And so I went and spoke to our ministry TV show’s executive producer about it. I didn’t hear anything for a while, but a few months later, I got a phone call from the conference room, where the TV production team was brainstorming ideas for future programs. They asked me about Johnny, and I told them his life story and how his brother and sister-in-law took such good care of him and their own special-needs children as well. They then sent a TV producer and film crew to their house in Boca Raton, and about two months later, the following feature was aired nationally on The Coral Ridge Hour.
In his interview, Johnny spoke of the sanctity of human life, and how God caused this to happen to him. He said in part, “I reject the notion that God allowed this to happen to me. No. God caused this to happen to me for His own glory. I don’t know why, but when I get to Heaven, I’ll ask Him.”
I later asked him what reaction he got from his TV appearance. He told me that dozens of women had contacted him who had gotten abortions because they learned that the child they were carrying might have birth defects. After seeing Johnny, they were so ashamed, and they told him so. Johnny wrote them all back (through voice activation) to let them know that God is forgiving, and how He loved us by sending His own beloved Son, Jesus Christ, to die for our sins. This was a tremendous example of God’s power being manifested through the weakest of vessels.
Johnny had also previously appeared on Cross TV, where he spoke with great knowledge and insight on the doctrine of the sovereignty of God. He demonstrated himself to be a strong student of the Scriptures, and as one who paid great attention to the preaching of Pastors Robert Fisher, William Hughes, and Robert Diekema, whom he sat under.
Looking back, I see in hindsight that I said goodbye to Johnny in stages. The first stage was when I told him that I had embraced paedobaptism (the practice of baptizing infants); being a Reformed Baptist, Johnny strongly opposed this. I was nervous about telling him. But while he was sad, he could not have been more gracious. Even after this, I remained in contact with him, and for a time continued to help him lead his Bible studies.
In 2007, I met Stella, whom I would eventually marry. I made sure to take her to Johnny’s on her first visit to Florida to see me, which she enjoyed very much. A year later, we were married. In June 2008, Stella and I left for Atlanta, where I was to serve a one-year pastoral internship. I met together with Johnny one last time. We talked, reflecting on the Scriptures and the fact that his beloved Red Sox had just one their second World Series in four years. Deep down, I wondered if that would be the last time I saw him.
Thankfully, it wasn’t.
In 2010, I was called to serve as pastor of Faith Orthodox Presbyterian Church in Ocala, Florida. While it was nearly 300 miles from his home, I still had the chance to visit him from time to time. But as I was beginning my first pastorate, he gave me a wonderful gift: he designed our church website (he had taught himself HTML by voice activation), and maintained it free of charge for nearly two years!
In 2012, he wrote to me that his health was taking a turn for the worse, and that he could no longer maintain our website. I told him I understood, and thanked him for his generous help to me and to our church.
In spite of Johnny’s declining health, he continued to hang in there. I visited him in 2013 for what I honestly thought would be the last time. The visit just seemed to have a sort of finality to it as we talked and prayed together.
But I got to see him one more time. In January 2014, Stella and I were in the area; I filled the pulpit of a PCA church the night before. When we came into his room, we noticed that he had lost a lot of weight, and he looked much weaker than any other time I had seen him. His nurse said that he really couldn’t talk anymore, so I would have to do all the talking. So the first thing I said was, “Johnny, I have four words for you: World Champion Red Sox!” (They had just won the World Series in October 2013.) His face immediately lit up.
I then told him about what we were going through–especially about how the church in Ocala, my first call as a pastor, had just closed. He looked sad, and I knew that if he could speak, he would have said, “I’m sorry, Greg.” But I told him that we would be okay, and that I knew the Lord would take care of us. He seemed to like that.
Even though he couldn’t talk with his mouth, he spoke with his eyes. I asked him if he had heard from certain people, and his eyes would quickly move up and down for “yes.” I inquired as to whether certain men whom he had mentored still kept in touch with him. He sadly moved his eyes sideways for “no.” When we finished catching up, I prayed for him. Johnny obviously couldn’t pray for me (at least audibly), and I missed that. He prayed the most beautiful prayers. In his raspy voice, he always communicated a deep love for God, an appreciation for His holiness, a reliance upon His grace. Johnny truly held the gift of prayer in high regard.
As we were about to leave, Johnny motioned towards his nurse. She asked him if he wanted to say something. He nodded with his eyes. She then put her finger on a tube on his neck, and I could barely hear him say, “Thank you for visiting.” I will always be thankful that I got to hear him say that, and that the Lord so graciously gave me several “last” visits with him.
This last Sunday night (March 10), Stella and I were traveling back from visiting a church in Mobile, Alabama when I got the news: Frank Pontillo, a longtime friend and brother in Christ to both me and Johnny, called me to inform me of Johnny’s passing. Johnny had died peacefully in his sleep at 2:30 pm.
I was sad to hear the news. I will miss my friend. I did not get to tell him that I will soon be candidating at another church, and I won’t get to introduce him to the children that, Lord willing, Stella and I will one day have.
Even still, I was also happy to receive this news: I know, that as Paul said, that “to be absent from the body is to be present with the Lord,” and that it is “far better” to be with Christ. Johnny had fought the good fight, finished his race, and kept the faith, and he now has a crown waiting for him.
I know the Scripture teaches that Johnny’s body will rest in the grave until Christ’s triumphant return and that his soul is with the Lord. Even still, it is tempting to think that he is now dancing in God’s presence, free from all of his physical pain, and that he has met other Christians near and dear to us who have already passed on, including my own brother. Johnny has passed from this life, but he has begun his time in eternity.
Those who knew Johnny should be comforted by the fact that we will see him again. In 1 Thessalonians, Paul speaks of what will happen at Christ’s return: “For the Lord himself will descend from heaven with a cry of command, with the voice of an archangel, and with the sound of the trumpet of God. And the dead in Christ will rise first. Then we who are alive, who are left, will be caught up together with them in the clouds to meet the Lord in the air, and so we will always be with the Lord.”
What a great reunion that will be! Then, we will see Johnny again. Only, this time it will be much better. But even better than that, we will see Christ.
I’m already looking forward to it! Until then, I won’t be saying “Goodbye forever” to my friend. Instead, I’ll say, “So long for now, Johnny. I’ll see you in the clouds.”