Christianity,  Chronic Illness,  Community,  Epilepsy,  Health,  Mental Health,  Self Awareness

Sing a little louder

I was in church this morning and a song was heavy on my heart. It wasn’t a song sung on the stage, it was whispered in my ear by the Holy Spirit. More on that in a moment.

It’s been a while since I’ve posted my thoughts on my blog, rather than my Facebook page. Some of that is due to simplicity, some of that is because my Epilepsy + EDS were overwhelming to manage. It’s always a delicate balance, how do you put that into words without sounding absolutely fragile in the process? Honestly, you don’t. And I am fragile… but I don’t need bubble wrap, I need strength.

I live in a body that is excruciating to maintain. From diet overhauls, to therapies, to insurance companies… and I haven’t even gotten to the physical symptoms. My pain, at this very moment, is blinding. I am a medical cannabis patient, so I am medicated and it has taken the edge off, but I still feel the pain shoot through my body with every breath I take. I cannot medicate with pharmaceuticals, a corn allergy makes it near impossible, and finances make it completely impossible to receive what is left. I have Epilepsy, I also have scoliosis, causing cervical and thoracic instability. Ribs slip out of place regularly, shoulders dislocate, fingers dislocate and my hips and knees subluxate a few times a year. This week my right thumb has been out of place , it hurts steadily, but I’m able to ignore it. I carry myself well for someone who has very few options, i’m aware of that. I don’t wince with every ache, I don’t spend everyday in bed. I’m not depressed. If you ask me, I will fill you in. It’s not a secret, I’m not masking, and I don’t stuff my discomfort to feel artificial peace on my “good days.” I’m usually just quiet, because it’s easier to manage my reactions to the pain when I manage my external stressors. Also, my epilepsy tends to cause lingering effects on my face, I do not have many micro expressions.

We live in a home with a crawl space, it’s beautiful and just the right size, but boy does it vibrate like a drum. Stomping, walking, dancing and singing… a fragile spine means that my home is an overwhelming place for me sometimes. Due to my spinal curve, my spinal cord is taut. Like a cord being strummed, every significant sound shocks my spine, sending a jolt throughout my body. Ironically, if we turn up the music and it plays constantly, my nervous system relaxes and the casual noises do not affect me as much.

It’s here where I am functional. As magic school bus taught me, you can interrupt sound waves with more sound waves. You can overwhelm a bad situation with good. Not hiding from the pain, or “keeping busy” to avoid the issues… but keeping a steady stream of LIFE in my life. Whether it’s my literal problem with my spine, or the grief that comes with a chronic condition that affects every choice you make during the day… having community, activities, work, a purpose… all of this has saved my life. The secret is that the pain is still there, and those closest to me know this. The goal is not to make life like “normal” it’s to make life beautiful. I have my days of doubt, panic, overwhelm and sadness… I choose to believe. I choose to worship and celebrate. Everyday He extends his comfort, His grace for my doubt, His providence from miraculous places. He gets my hallelujah. I am a medically fragile person, in the middle of a storm… and I choose to raise a hallelujah, because my life is richer in His presence. In His presence I am no longer fragile, I am a warrior. Sing a little louder… 

 

Enjoy these lyrics

I Raise A Hallelujah, by Bethel Music

“I raise a hallelujah, in the presence of my enemies
I raise a hallelujah, louder than the unbelief
I raise a hallelujah, my weapon is a melody
I raise a hallelujah, heaven comes to fight for me
I’m gonna sing, in the middle of the storm
Louder and louder, you’re gonna hear my praises roar
Up from the ashes, hope will arise
Death is defeated, the King is alive!
I raise a hallelujah, with everything inside of me
I raise a hallelujah, I will watch the darkness flee
I raise a hallelujah, in the middle of the mystery
I raise a hallelujah, fear you lost your hold on me!
I’m gonna sing, in the middle of the storm
Louder and louder, you’re gonna hear my praises roar
Up from the ashes, hope will arise
Death is defeated, the King is alive!
Sing a little louder (In the presence of my enemies)
Sing a little louder (Louder than the unbelief)
Sing a little louder (My weapon is a melody)
Sing a little louder (Heaven comes to fight for me)
Sing a little louder (In the presence of my enemies)
Sing a little louder (Louder than the unbelief)
Sing a little louder (My weapon is a melody)
Sing a little louder (Heaven comes to fight for me)
Sing a little louder!
I’m gonna sing, in the middle of the storm
Louder and louder, you’re gonna hear my praises roar
Up from the ashes, hope will arise
Death is defeated, the King is alive!”

 

(photo by Taryn Starkey Photography)

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