Bouncebackedness: Overcoming

DISCLAIMER:  I’m about to share a very personal story that includes lot of medical information. While it may be new to the reader, this road and the medical support we’ve received over the years is not new to us. You’ll probably read this and have all kinds of questions and ideas that come from a place of love and concern. Please know that this isn’t written to garner sympathy, but rather to show the surpassing grace of God and how good He’s been on this journey. If you have any questions or suggestions, please refrain from bombarding Aaron with them. He doesn’t let this situation define him. You can contact me, if you’d like and I’d be happy to answer any questions you have. Thanks! Love you!

“…I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me.” 2 Corinthians 12:7b-8

We were young as we sat across the table from one another in October of 1998 – 24 and 22, on the precipice of building a life together. Engaged for two months, our plan for the evening was to finalize our wedding guest list over dinner.

Halfway through our meal Aaron dropped his fork suddenly and said, "Something's not right. I need to go the ER."

What started out as leg cramps turned into a three day stay in the hospital hooked up to IV fluids in an effort to flush his system. He was in danger of kidney failure.  Scary phrases like "astronomically high levels of muscle enzymes in your blood" and "you shouldn't even be able to walk" shook the world we were building for ourselves.

The weeks to come were a blur of tests and biopsies and words like “neurology” and “metabolic” and “disorder” and “quality of life.”

But soon, a diagnosis was in sight. The team of neurologists had narrowed it down to one of two possible maladies - one of which was ALS (Lou Gehrig's disease). If that was the case, the prognosis was bleak. Aaron sat me down and told me that if the final test came back positive for ALS, he would break off our engagement. Chances were that he'd be dead inside of a decade and didn't want me to spend my 20s and 30s caring for a dying man. 

The diagnosis finally came:

Myophosphorylase partial deficiency - an extremely rare glycogen storage disorder. His body is unable to store energy (glycogen) and therefore when immediate sources of energy are depleted, his muscle tissue breaks down as his body attempts to use it for energy. This in turn thickens his blood into an enzyme-rich slurry that his kidneys can’t filter.  It’s genetic. There’s no cure. It had remained dormant until he went on a no sugar/low carb diet to drop a few pounds for our wedding.

Thankfully, the prognosis was so much better than we originally thought. We moved forward with our plans of making a life together.

His doctor told him that he is to constantly stay hydrated to keep his kidneys flushed because his body will most likely always be breaking down muscle tissue to some extent. To minimize that, he was instructed to avoid activities that isolate muscle groups. And exercise designed to build muscle would have the exact opposite effect on him. He is only allowed to do cardiovascular types of exercise – no weight training. Other than that there's no real treatment other than vitamin B supplements. His doctor also said that a factor he had working in his favor was that at the time of his diagnosis he was very strong and had significant muscle mass.

But he’d suffer with chronic pain for the remainder of his life.

It took him several years to fully grasp how to manage this disease. For the first three years after his diagnosis, he landed himself in the hospital once a year because he was 20something and invincible and didn’t follow the doctor’s instructions to the letter.

For over 17 years, each morning as I’ve laid next him, I’ve heard him sigh deeply as he prepares to gather the strength to hoist his aching body out of bed. Hunched over, he shuffles toward the shower like a man twice his age with his hands balled up into cramped fists. The hot, running water of the shower slowly loosens the knots throughout his body.

But on any given day, if I run my hand over his back, I feel a large, solid clump of muscle. It’s never in the same place. The pain and cramping migrate daily. Sometimes it’s in his calves or thighs and sometimes it’s in his arms. 

He rarely complains and he doesn’t “look sick.”  He plans the physical activity of his day around the pain. And yet, he’s the hardest-working, most productive person I know.

On really bad days, he doesn’t say a word, but I can see it in his eyes – they are puffy and sad. And on those days, when I lay my hand on his arm, I can feel the muscle vibrating below the surface of his skin. It’s not visible to the eye…only to touch.

As he said on Sunday, we all have a “something.” For some it’s physical. For others it’s emotional or spiritual. A thorn in the flesh can easily become a point of defeat, doubt and disillusionment. If you haven’t had a chance to listen to the podcast from Sunday, I would encourage you to go do so. Right now. I’ll wait. J

I pray for his healing with regularity. We know that he’ll be healed one day – in this life or eternity. As believers we are promised that. But in the here and now – in the weakness – when he could feel really sorry for himself or get angry at God he remains in awe of Him. I’ve never met anyone who loves Jesus as much as Aaron does. He exemplifies what a “relationship with the Lord” looks like. They talk to one another regularly. God speaks to him, encourages him, and gives him insight, wisdom and discernment in unbelievable ways. He weeps with emotion at the goodness of God and the potential of what God can do in the lives of others.

I know that the thorn in his flesh – although he’s prayed for God to take it from him on numerous occasions – has brought 2 Corinthians 12:9 to fruition in him:

“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”

Often in the agony of the unanswered prayer, God uses our "something" – our thorn – to further His purposes and perfect His will.  If you’re suffering with a thorn in the flesh today, I would encourage you to ask for His grace to allow His power to be made perfect. You are loved. You are seen. You are not alone.

Written by: Jaime Hlavin