Heather Bellamy spoke with Steven Harris about what he endures every day because of Duchenne muscular dystrophy and the joy he has found in the midst of his suffering

I go through a toileting routine when I'm done eating at night. It's lots of manoeuvring and balancing, which is hard to explain. My dad carries me from the toilet to my room at night. I wear the Bipap machine which helps me breathe at night. My parents get me in a comfortable position with pillows and foam that are on my bed.

Oh yeah, after I get done eating, things get so difficult that I usually cry out for my parents to pray and help me Jesus and I cry out for Jesus to help me. But I'm still alive and kicking.

Heather: How have you coped with this over the years, have you been angry or depressed?

Steven: When I was younger it didn't really bother me because I didn't really know what was going on. The first time I got upset, I think I was in the first grade. I had my leg braces on and somebody said, "Are your legs broken?" and I said, "No, my legs aren't broken, leave me alone". I started getting angry and depressed towards the end of 8th grade and into high school. I was nice to the people I did like, but I could be a real jerk sometimes to those I didn't like. I used to bury myself in very non-God centred rock music and very violent Japanese cartoons. It was very weird. I would try to escape in violent games, comic books and movies. I had an obsession with sci-fi stuff and a lust for violence and each of those things just made me more angry and depressed.

There's one thing I want to share that only a couple people know that I struggled with. I also tried to escape by looking at pornography and junk on the computer. Thank goodness for people who catch you when you're doing things you shouldn't be doing. Thankfully every time I looked at that I would feel like I had to throw up.

I also contemplated suicide and driving my chair out into the freeway. Thank the Lord for protecting me from such awful things.

Heather: Have you ever been able to work?

Steven: Nope, I've never been able to work a job. It doesn't really bother me too much. If I could work, I'd probably like to work at a health food store or be in the postal service. But for right now my job is to seek the Lord and share the good news and just stay alive.

Heather: You're a Christian. When did you give your life to Jesus and how did that happen?

Steven: I was one of those kids who were taken to Pentecostal church every Sunday and Wednesday. I think that when I was younger, about seven, I came to the realisation, "Whoa! Jesus really died on the cross!" But I didn't really understand what it meant. It was strange, because about the time I was in 8th grade, I didn't really care about the Lord or worship or anything, but somehow I knew to stay away from drugs and sexual things and music by people like Marilyn Manson and Black Sabbath and things like that. I was like, "Hmm, I wonder who's keeping me from doing that?" I can't really give you an exact day, it was sometime between 1999 and 2000 after the Columbine shooting; it really got me thinking about my mortality. I was thinking, "Man, I want to do right, I don't want to go to hell" and, "I really need to give my life to the Lord and take His salvation seriously." I don't remember what I prayed, but I do remember the change.

Heather: Did becoming a Christian change anything with your condition, either physically with the symptoms or in how you handle it?

Steven: The way I handled things really changed dramatically. My fear and anxiety and depression just melted away. I had that joy unspeakable and full of glory and a peace beyond all understanding like the scripture says. I used to have a, "Why me, why me?" attitude and it changed into, "Who can I share the good news with and try to help?" That mean and angry attitude turned into love and compassion for others. I used to have really ugly thoughts toward people in my mind, especially to those who are mentally handicapped, but the Lord has a sense of humour because in high school, for all four years, the main room was the multiple disability room for people with mental and physical handicaps. But now that's totally gone.

That doesn't mean I didn't have challenges, I still have challenges.

Heather: You just recently turned 31 and you shared with us that that was a miracle. Why is that?

Steven: Duchenne muscular dystrophy is a degenerative muscle wasting disease. Most people with the condition pass away between 18 and 21. Most patients that live past that have to have a respirator and have a tracheotomy. Fortunately I've not had to do that. Me and my parents have decided that I would never have a tracheotomy or allow paramedics to perform CPR, as it would do more harm than good.

Heather: What does your relationship with God mean to you?

Steven: It means everything to me; I wouldn't have life without my ongoing relationship with the Lord. I truly want to love the Lord my God with all my heart, soul and might. He's shown me the joy of discovery by reading His word, worshiping out loud unashamed and the privilege of being able to ask Him for help for myself and others. He's given me hope and a future and showed me I could do the impossible with His help. He's given me dreams and visions and unction to accomplish what He's called me to do. He's guided me to write a tract to pass out (me and my family have passed out over 3,000 of them) and I've got three blogs and a fourth one on the way. God the Father and the Son get all the credit; there's no way I could do that on my own.

Heather: What is your understanding of suffering and sickness and how to deal with those things in your faith?

Steven: I've learned that nobody's exempt from sickness and suffering. Look at the prophets and Jesus and all they went through. I've learned to be thankful and to appreciate the people who help take care of me and that God does care and does see my situation and does hear my pleas for help even if it seems like nothing is changing. I cope by praying to the Lord and listening to Christian music and worshiping Him and recalling the God of the universe and His promises. I'll give you a few examples:

Proverbs 3:5-6
"Trust in the Lord with all your heart
and lean not on your own understanding; in all your ways submit to him,
and he will make your paths straight."