Over the last couple years I have been struggling with the complications of having Spina Bifida. Although a recent surgery has made things much better I am still working with doctors to find new ways to enjoy life. I try my best not to complain about living with this disease but naturally find myself frustrated and discouraged. I could write and blog endlessly about the daily challenges I face. Some might even say I have a right to. In fact, I’ve had people surprised that I could even be a follower of God. “How could you love a God who would allow you to be born this way?” they might ask.
Now, don’t get me wrong. I’ve had my share of yelling at God, asking him to take this away from me but if there is one thing I have learned in my walk with Christ it’s that this isn’t his fault. Our culture likes to play the blame game but the truth is w
You see, as much as I could write complaining about my condition, I could equally if not more so write about my blessings. I could tell you how most people born with Spina Bifida never walk or think for themselves. I could tell you how my prognosis was exactly the same. I could tell you that 9 out of 10 people with Spina Bifida develop a condition called Hydrocephalus, a condition in which there is too much fluid surrounding the brain causing mental retardation and other complications and how if I were in the room with those 10 people I would be the one with ‘normal’ brain function and one of the few walking.
I could tell you all of these things and truthfully, I should testify to the blessings much more often. For the most part I keep silent about my condition and choose to not let it define me.
Our culture has a very interesting attitude towards people with disabilities often giving them a bi-polar experience in life. We are often either hated or loved, ignored or glorified. There are countless numbers of students with special needs who daily resent of going to school because they fear they will be bullied. I was one and I work with them now. On the other hand, there is a growing amount of schools advocating the recent Bullying Movement and showing students with special needs that they matter. One such example includes a local Michigan student who went from being bullied to being the homecoming queen after her story gained attention. We can’t measure the motives or intentions of her peers who voted for her but we can say we have seen many more students with special needs spotlighted by their peers in what appears to be a positive change in the way these students are treated.
But is this really what people with disabilities want? Well, everyone wants to be treated with dignity and respect whether they have a disability or not. Some go as far as to exploit their disability in order to take advantage of the compassion of others. I’m not naming any names but it does happen.
When I go out in public in the summer wearing shorts I often elicit a lot of stares even some dirty looks. I try not to allow it to bother me too much. In fact, I have a friend who when they go out with me flashes dirty looks back at those who stare at me. This isn’t something I would promote but it is pretty funny! But do you know what I want more than anything?
To be treated just like anyone else.
I don’t mind the questions. It’s natural that I am going to get asked about my condition but what I do mind is getting stared at. I would much rather just be asked and given the opportunity to share my story. Don’t hear me wrong. I’m not looking to be glorified. I don’t want to share my story because I want attention, sympathy or someone to tell me how inspiring I am. I don’t need any of that. I just want to share my story because we all have a story to tell.
More importantly, I want to tell the story of Christ. That’s what I want to be known for. I don’t want to be known as the Youth Pastor who wore braces. I want to be known as Matthew. Yes, I wear braces but that’s only part of my story. I have a story of Christ redeeming me and shaping who I am that doesn’t always have something to do with my condition. Just like you, I am a sinner too. Just like you, I’ve experienced ups and downs. Maybe our ups and downs have been different but we all have a story to tell.
When I die, I want the most spoken thing about me to be that I was a follower of Jesus Christ and that I used whatever gifts he gave me to glorify his kingdom.
That’s what I want to be known for.
I’m not ashamed of my condition, I’m just not interested in keeping the attention on me. I’d much rather spend my time making his name known, not mine.