I wrote a blog after training camp about what the Lord walked me through pertaining to the struggles I had with being blind. I didn’t know how to feel about being that transparent with people. I didn’t like people knowing that being blind really affected me, but the outpour of love and appreciation from being real has been almost overwhelming. That post was my most viewed blog so far, but it’s been the tough blog to follow up with. I’ve had so many people give me such positive feedback from that blog, but also a lot of questions came from it.
How did you lose your eyesight? Why did you have 15 eye surgeries? Why did all of these people pray for you for so long? What is your story?
I like to think of myself as an open book… but only if you have the right questions. I realized through the aftermath of my last blog that people don’t really know me. They don’t know me before Jesus, just after. Even some of the people I do life with, the people I’ll be on the Race with, the people who happen on to my blog by chance or because my mom’s Facebook page (we all know thats where you really came from, Thanks Margie 😉 ), I’m not as open as I like to think I am.
I was talking with my mom in our garage the other day about how I’m not a schedule’s person. How I’m such a “go with the flow”, “fake it till you make it”, and “don’t worry we’ll wing it” type that its almost a flaw of mine. I’m not good with structure, I’m terrible when it comes to following rules, I almost always forget stuff (like literally everything), it takes me 10x longer just to do a simple task because I like to stop and smell the roses. All of these things that make me unorganized, spacey, & dysfunctional are also the things that make me spontaneous, simplistic, and in the moment. But these things have recently been something I’ve been dogging myself on instead of embracing.
When I was talking to my mom about it and processing through why I’m like this, she made me remember my childhood. & y’all that wasn’t fun for me.
When I was 6 years old I was diagnosed with a very rare eye disease called Parsplanitis (Pars, for short) in my right eye. Essentially its an eye disease characterized by inflammation in certain areas of the eye. Now it started off as just my eyesight being foggy and blurry, so my mom had to take me to the eye doctor after I told my nurse in the cafeteria one day that “It looks like someone set off a smoke bomb in here, thats not nice”. My mom didn’t believe me when I told them that I couldn’t see the big E. After that day, it honestly is a blur. We met with countless doctors who had no idea what they were looking at. They didn’t know what to tell us.
THANKFULLY, I was in the right town at the right time because the best man for the job lived & worked in my home town. Dr. Magie saved my eyesight. He took one look and knew what we were dealing with. He started me on a series of drugs that ended up not working. Then he started the surgeries. 14 eye surgeries before the time I was 10. Some I remember, but majority of them I don’t.
I do remember the day my eye went half black, however. I was in Russellville with my God-family riding mules (the ranger looking things not the horses lol) My god-brother Ryan and I ramped off this little mound and crashed into a hay bale. Nothing too serious, I hit my head on the head rest and when I opened my eyes to see the hay in front of me, my right eye was half black. I genuinely thought I had hay in my eye when I asked my Godmom to look in my eye because I couldn’t see. Y’all, I’ll never forget the look on her face when she looked at me and told me that I was gonna have to call my dad. Not even 24 hours later I was getting prepped in the OR for a retinal repair surgery.
Noooowww, this is getting heavy and honestly it just gets heavier. So long story short. I lost my eye sight after a few more surgeries and lot more issues. I’m not going to lie it was hard. I was a dancer and I hunter-jumped horses, I tried to fit in at school. But honestly I wasnt ever there. I acted different because I went through way more than the other kids, I looked different because the muscles in my right eye were shot after them constantly being cut on. But after my last eye surgery and after Dr. Magie sat us down and told us that he contained the Pars to my right eye & there was no cause for spreading but no hope for vision; we just thought we were done. I thought I had a chance to finally be normal.
>>Fast forward 2 years: The inflammation from my eye presented itself in all of my joints in my body as Juvenile Rheumatoid Arthritis. This is when things got difficult for me. This is when I believe that I learned the habits of “day by day” and “go with the flow” because that’s all that was offered to me.
Everyday presented a new difficulty. I couldn’t hold a pencil, I could barely walk, I couldn’t do much. (Although one time, In 9th grade, I got to ride in a wheelchair till my mom came and got me from school cause I couldn’t walk and that junk was LIT)
They started me on this new chemo drug & Immunosuppresents. It sucked, it made it to where I could literally walk into school perfectly healthy and walk out by lunch with the flu or bronchitis or some other kind of crap. It was a constant battle of not knowing what the day was going to bring. Starting with high hopes & a game plan only to have to change everything we needed to do for a different tactic because sometimes life just doesn’t go according to plan.
I had to quit dancing, riding horses, playing soccer, and all the other things that gave me a fighting chance to be normal and individualized. I hit rock bottom by 14. I was diagnosed with depression because I became so done with everything I became suicidal. I gave up on myself, God, and people all together.
All throughout middle school and high school I was in and out of the hospital; there were times where I was just homeschooled because walking into school was dangerous for me. Because if I caught something that caused my inflammation to flare (ahem, strep) I could be crippled or blind. SuPeR gReAt !!~* I got bitter watching my friends live normal lives. Going to prom, homecoming, football games, and parties. I got mad because things at home were falling apart on top of my doctors visits and bi-weekly/monthly chemo sesh’s. My brothers started struggling more than I could even understand and if we’re being really real… Literally nothing was going right. The crap hit the fan.
AGAIN, super heavy. & not a lot of this is positive. But for me being able to look back at where I was and relive all of these things is good. It keeps me humble. It reminds me of the boys & girls I met in children’s hospital who didn’t make it. Or the little girl I met in the waiting room of my rheumatologist’s who legit COULDN’T walk. Not just some days, 100% all the time. I was 16 when I met her… she was 4, but she had more joy and love in her little pinky than any grown adult ever would in their entire body. I’ll never forget the little boy who had it worse than me but couldn’t afford the chemo drug that I was the test dummy for… I’ll never forget how heartbroken my parents were when the doctors told them that they weren’t allowed to help pay for his medication. I still think about it to this day.
I had to be okay with not having a schedule. I remember one time I was trying to follow a schedule to make it to some function on time (partly because schedule; mainly because I wanted a life) so I talked the nurses into pushing my chemo meds faster than they normally did & I legit went into anaphylactic shock. 10/10 Don’t recommend that life, like at all. I had a benedryll hangover for like a week after that.
I got bitter and hardened because of this life I grew up with. I used to pray to God and I just felt like He wasn’t listening or maybe that He just didn’t care because I mean lets face it… there were people who had it worse than me. I didn’t love the Lord till I was 20 because I firmly believed that if God gave a crap about me then He would have showed up. He had ample opportunities to do so.
But now I see everytime I look back on the things that made me who I am that he was there the entire time. I see him holding my hand before I freaked out when needles came around. I see him holding me in my hospital bed when I cried myself to sleep. I see him in the 4 year old girls joy and love. I see him in the people who cheered me on, who encouraged me to start dancing again, who challenged me to be brave and courageous. I see him in the doctors who gave me a chance at normalcy. I experience God everytime my schedule falls through or my plans don’t work out. I feel God’s love and tenderness towards me anytime my parents go out of their way to make me more comfortable, or to make sure I’m doing okay, or all the times they just put me before themselves like they’ve done my entire life.
God was alive and well in my pain. He was present and attentive in my hurt. He was patient and gracious in my bitterness and resentment.
He’s been there in sickness and in health.
When people ask me why I am the way I am, I refuse shudder away and be ashamed that my life turned out differently than theirs. I haven’t always been this way. Really just in the last 8 months I’ve realized how important it is to embrace every aspect of my story and just learn to be okay with it. As a believer now, I know that the Lord allowed all of these things, and all the things I didn’t mention, to happen for my benefit and for His glory! One thing my mom told me a few years back when I had a breakdown and a healing moment about all of this was “God allowed all of this to happen so that you can be more relatable”. AND MAN AINT THAT THA DANG TRUTH. Because of all of my junk I’ve been able to be more relatable, understanding, and more compassionate with my friends, my small group girls, strangers that I talk to, people I get to pray for, and countless of other people that the Lord is going to put in my way one day soon.
So here’s me. Being real, being honest. Just telling my story. Because I believe this world and Our Father’s Kingdom need’s more of that. The power of our stories is so strong and if we’re willing the Lord wants to use them to shed light on His goodness in all things.
xo marge-
