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Cindy DeBoer

Cindy DeBoer

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Retinitis Pigmentosa

Don't Listen To Me – Go With Steve!

September 26, 2019 by Cindy DeBoer 5 Comments

Today, I planned to share how shitty I feel.

I planned to rant about my lung disease and how unfair it is that as a non-smoker I’m suffering from something totally similar to COPD.

I planned to curse a lot and tell you what it’s like to have a disease no one can outwardly see.

I planned to expose some vulnerability and tell you that all my days are not positive and sometimes I just want to cry and feel sorry for myself.

I planned to share what a “BAD LAM DAY” looks like (this is what my LAM sisters and I call them) – where simple things like taking a shower, walking through a parking lot, or taking a flight of stairs leaves me so exhausted I want to take a nap.

I planned to write a post that doesn’t end with smiley faces, exclamation points, and “Isn’t Jesus wonderful?” like I typically do.

I planned a bunch of things in my head for today’s post.

But then today unfolded…

I lead a group of 6th and 7th grade girls in a Discipleship Program at the Potters House School where I volunteer. Their Bible verse for today was this: “When Jesus spoke to the people he said, ‘I am the light of the world. Whoever follows me will never walk in darkness.’” John 8:12

I decided hearing the true life story of a blind man would fit with the verse perfectly, keep the girl‘s attention, and hopefully aid them in memorizing the verse.

So I asked Steve to come speak to our group.

About 30 years ago, as a married man with two children and one on the way, Steve began losing his eyesight from a devastating disease called: Retinitis Pigmentosa. He fought through diminishing eyesight for several years and managed to continue driving and keep his job. But, eventually, with three young children and the weight of providing for his family on his shoulders, he could no longer deny it – he was legally blind. Today, Steve can see absolutely nothing.

Steve shared how he initially bargained and became angry with God after his diagnosis. He shared how debilitating his anxiety became as he faced a future of KNOWN blindness. But the GLORY of his story comes as he realized he had only been looking at the negative side of being blind. Until one day when he imagined Jesus hanging on the cross (the most negative experience known to man: crucifixion) and he realized the cross makes a “PLUS” sign! The cross, by it’s very nature of construction, forms a POSITIVE symbol!!!

This realization turned Steve’s world around and he began writing all the things he was thankful for. He wrote POSITIVE statements about his situation, instead of negative. At one point he told our group, “In a way, I have found freedom in my blindness. You are all DEPENDENT on your eyesight. I am INDEPENDENT of that sense, so I am not bound by it. When I look at it that way, I experience a new kind of freedom.”

Steve may be the most POSITIVE and OPTIMISTIC person I know. And he’s totally blind.

First one, than two, than three tears were streaming down my face. Steve had touched me in the depths of my pain.

All I could see about LAM today was that it was disabling me, making me feel “less than” and “less able.” In a swift moment, Steve helped me to see that I’ve been made free from having to be as productive as most people. As healthy people so often DEPEND on their ability to accomplish much, I am INDEPENDENT of that pressure. My body tells me what I can and cannot do, and there’s not a darn thing that can be done to change it. So, in a sense, I am free from that pressure.

Oh friends! The JOY of the LORD is our STRENGTH! And He alone will give us the insight and power to take the hardest, most painful parts of our lives and turn them around into something that can be used for HIS GLORY!

God alone can show us the POSITIVE when all we can see is the NEGATIVE!

So everything I had planned for this blog was trashed.

Steve showed me a better blog.

Go with Steve!

Filed Under: Contentment, Joy in the Journey, Lymphangioleiomyomatosis, Suffering, Terminal Illness, Uncategorized Tagged With: blindness, LAM, Retinitis Pigmentosa

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