My Walk with Faith While Living with MD

Leah Leilani avatar

by Leah Leilani |

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putting faith in perspective

People are always surprised at how faithful my family is. They think that because of my illness we would automatically throw our faith out the window, or that we would blame God for our circumstances. It’s quite the opposite actually.

Growing up, I wouldn’t exactly say we were a family of devout Christians. I knew why we celebrated Christmas, we went to church as often as possible, and I even went to a Christian pre-school. But that was about it. I don’t remember learning anything in Sunday school. As I became ill my parents would have to piggyback me upstairs, which was where the Sunday school classroom was. There were no elevators. It was a very impractical situation, so we stopped going. Fast forward a few years and we found ourselves at a new church that some friends attended. It’s now our home church. You could say it was “a match made in heaven.”

Every time we went to church I would follow the other kids to Sunday school. Later, I realized I wasn’t learning anything worthwhile. I didn’t want to learn the specifics of every story in the Bible, or to go over everything, chapter by chapter, verse by verse. I wanted to learn about how to improve my relationship with God and what he wanted from me. So, I decided I would start staying with adults. I’ve never gone back to Sunday school.

My muscular dystrophy isn’t something you can see with your eyes. On the outside I look like a regular college-age girl, but I’m not, and I’m so thankful whenever someone understands the struggles my life consists of. That’s why I’m grateful for every person who takes time to care. Even something small like that is a miracle.

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I’ve had doctors tell me that I’m faking and family members shun my parents for whatever inaccurate presumptions they have, but that doesn’t erode our faith. Those situations are unfortunate, but they were a blessing in disguise because God led us in a different and better direction.

My tattoo. (Photo by Leah Leilani)

I’ve never been much of a Bible reader. To me, it’s like being 6 years old and trying to read a chemistry book. I would need someone to sit by me and explain everything. With the progression of my disease our trips to church are few and far between. But I still maintain my faith by being aware of the blessings around me.

I know people at church who have dedicated their lives to praising and worshiping God, yet they’ve never felt his presence. I feel God when I’m at total peace, or when I feel overwhelming love, or when a prayer gets answered.

People always want to try to heal me, but it’s always made me uncomfortable. I recently figured out why. I’ve heard people say that illness is brought on by Satan and, therefore, there’s something to be fixed. They think I’m suffering. Well, I’m not. My life is full of happiness and joy.

Yes, I’ll admit, there are times I wish I could get my driver’s license and go to college like my friends. I’m human. But God has his own plan for me and I have to trust that plan. One of my favorite verses is Jeremiah 29:11: “’For I know the plans I have for you,’ declares the Lord, ‘Plans to prosper you and not to harm you, plans to give you a hope and a future.’”

Life is full of uphill battles, whether you’re Christian, Buddhist, or atheist, it doesn’t matter. What matters is your perspective. It’s substance over circumstance.


Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy. 


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