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Duchenne Awareness Day

in necessary for muscle development. It progressively weakens all the major muscles in the body, including the heart and lungs. Because today is Duchenne Awareness Day, I thought it would be fitting to share a bigger picture of how Duchenne muscular dystrophy has affected my 45 years of life. While some of you may have heard these things before, many of you have not.

When I was five years old, I was diagnosed with Duchenne muscular dystrophy. With their constant love and support, my parents helped me to deal with the stages of the progression of the disease. It was particularly difficult walking to school every day, especially when I started to fall often, at around seven or eight years old. Other kids would laugh and pick on me when they saw me walk. I knew that this was because they didn’t understand muscular dystrophy, but at the same time I was deeply hurt because I was also a kid just as they were and I wanted them to like me. Soon, I needed a wheelchair. Thankfully there were number of kids who were my friends and who would always come to my aid.

I never really liked school very much because of the hardships I faced. In those days, there were not very many resources available for children with special needs. I always had trouble keeping up and paying attention. As no one really paid attention to me, I never really paid attention to anyone, especially teachers and fellow students. Anyway, it all became much more difficult when I was in high school. I became depressed when I saw my peers drive and hang out with friends, and do all sorts of things that I could not. This depression lasted for some time, a shadow that hung over me well into my early 20s. I tried to medicate my pain with harmful thoughts and behaviors, and through the dark music I listened to. In a word, I committed sin with the misguided hope of feeling better.

I had prayed for physical healing and I never got it – – so I figured God didn’t really care about me. If he did, he would cure me, would he not? It was about a year or two before the year 2000 in which I began to understand the concept of finding meaning in suffering. In other words, there was a reason for it. Finally, on a family pilgrimage to Lourdes, where miracles are known to take place, I received a great and profound miracle: I was able to accept my physical condition and to see it as a blessing from God, and even as a sign of his love for me. Suffering conforms me to Jesus Christ on the cross, it is a means of entering into union with God. It is a sign of his deep and intimate closeness to me.

It is still difficult living with a physical disability. Due to the progression, I can hardly move. I have learned to make many sacrifices because of it. And I have surrendered many things. I am content even though I don’t have a wife and family of my own. I am content even though I don’t have a full-time career and make a lot of money. I am content with everything as it is. I am not in control – – I am reminded of this every day! But there is nothing I can do about things beyond my control. I just sit back and go for the ride, knowing that I am in the infinitely merciful hands of the one who is in control of everything.

The average lifespan of someone with Duchenne muscular dystrophy before advances in medicine was about 20 or so, it is now around 30 to 40 years of age. I am still here. I almost died because of respiratory failure. My lungs do not allow me to breathe on my own, so I need the assistance of a ventilator and tracheostomy. I almost died because I have advanced heart failure and so I need the assistance of a pacemaker. But I am here… Therefore, I will do good with the life I have been given, making the best use of the time I have. I want to encourage others to do the same.

My suffering has meaning, and it can be used for very great good, as a prayer, offered in union with the cross of Christ, for the salvation of souls most especially. The death of the body is one thing, the death of the soul is entirely another.

I can’t fully explain it but there is great joy in suffering and in having a physical disability, a chronic physical disability that is crippling me slowly and surely. My outer self is wasting away, as St. Paul tells the Corinthians, but my inner nature is being renewed every day. “For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison.” (1 Corinthians 4)

Suffering and death are a part of life.We have hardships, we have difficulties, we have crosses to carry. In this life we will suffer and we will die. But the power of death has been destroyed by the redemptive life-giving death of Christ on the cross and by his glorious resurrection, and it is now a gateway to life eternal. Muscular dystrophy is bringing me directly into an encounter with Christ, here and into eternity. I am assured that if I suffer with him, I will be glorified with him. Good philosophy as well as my faith both teach me that the separation of body and soul are unnatural. Body and soul were meant to be in perfect harmony, never to be separated. Therefore, just as there was a fall causing disorder, there will be a restoration. There will be a resurrection of the body, a total transformation, a new harmonization of body and soul. I look forward to the day that I will run, jump, and yes, even fly.

I thank God for allowing me to be born with muscular dystrophy because it has truly helped to make me the person I am today. It has given me the opportunity to hope, to grow in wisdom, to be the best I can be. I would like to encourage everyone to persevere and make the most of their life, even in the face of suffering, especially in the face of suffering. The final victory will be all that much more sweeter for having suffered.

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