In a world full of possibility, don’t settle for mediocrity.
I haven’t been able to drive my wheelchair for a while. It’s been very discouraging. Since I was just twelve years old, I operated my wheelchair with my right thumb and forefinger – the only muscles (other than facial ones) I could successfully use – through fiber optic light technology. I had four sensors that I simply held my thumb or finger over to move different directions. While this technology is very fragile and breaks down often, it was a huge blessing to me in giving me a sense of independence which is so vital when you’re in the kind of situation I’m in. I know how to care for myself but can’t move to do so. I train people to care for me, and I am eternally grateful to have the privilege of doing so; as others in my condition often times are placed in nursing home facilities where they are given sub-par care and have a very low quality of life. Even still, training others to care for me just isn’t the same as taking care of myself. I don’t mind it, and I’m not writing this to complain or garner pity, but to give you a glimpse into my world. I have little control in my life; it’s simply a byproduct of living with SMA. I found two main outlets of independence at a young age and latched onto them: the ability to control my own wheelchair, and the ability to control my own computer. When I reached age 11 I had lost the ability to utilize any of the “normal” types of computer mice… er… Mouses? Anyway, at that time I transitioned over to an intricate hardware/software combined system that allowed complete control of my computer using only a small microlite switch. These two seemingly small innovations opened up a world of possibility. Try to imagine having that, then having one of them taken away.
The first half of this year has been… Hell is the only way to describe it. And take it from me, if Hell is even half of what I’ve suffered, turn your eyes upon Jesus while you can. The whole mess really began a few years back in 2016 when my permanent feeding tube began coming out of place and causing serious health complications, but it really climaxed in October of 2017 when I began an ever-increasing stay in John Hopkins ICU. To condense a very long story, it was a viscous cycle of cellulitis, g-tube displacement, then MRSA, then g-tube infection, then starving, then… I almost died. Then I broke my arm, then my g-tube wasn’t happy again, then I got cellulitis again, because why not? Everything hurt and I was so over life. Nobody understood, and most were tired of hearing me complain. I tried to hide the pain but I just couldn’t, and was reminded of it with every movement. And to top it all off, I couldn’t even drive my own wheelchair anymore. Whether it happened because of my broken arm or simply the progression of my disease, I’ll never know. Regardless of the reason why, I was utterly defeated. I would spend hours trying to get my hand in the perfect position to drive, only to admin defeat in tears and give up. So I cried. Then I got to work. There has to be an easier way to drive, but my wheelchair tech said no. So I searched and searched to no avail, and scheduled an appointment with my technician today. Imagine my surprise when I got inside and heard him say “there is one thing you could try…” LET’S DO IT!!! “But you won’t like it.” LET’S DO IT!!! “It’s slower than what you’ve got.” Jeff, my man, you’re killing me! What I have is the best but I can’t use it so it’s useless. “I don’t know what interface would even work for you…”… A microlite switch! Ba-da-bing ba-da-boom, I’m driving! I’m a little slower, sure, but I finally have my independence back! What an amazing feeling to have it back.
In this life you will face challenges different from my own, but still just as important in creating the person God has called you to be. It’s not the circumstances that define us, but how we respond that tells who we truly are. Are you going to give up at the first road block or find a way around? You can say what you want about depression and anxiety – I know they’re real and crippling. I also know that hope and perseverance are just as real and maybe even a little more powerful than the other two.
Life is hard but God is good. Don’t settle for a mundane life when God wants you to soar. Christians have become so passive in life that they forget God made us to be warriors. Where would we be today had little David of the Bible had an enlightening conversation with old Goliath? We’d be in big trouble! No, David stepped up boldly and showed that giant who’s the boss – the God of Israel! Stop settling, you only get one shot at this life. Make it count! And don’t lose hope. I know how the story ends – we win!
I can’t decide if this song fits, but it’s awesome nonetheless…

One thought on “Champion

  1. You are a champion!! God knows what you have to endure and you Amber have come out a champion. We will never know why you were given this disease but one day I will run the streets of Heaven with you my friend!

    Liked by 1 person

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