October 19

It just occurred to me that I never made a post about my call from Dr. Pardo at Hopkins a few weeks ago. I don't know how this escaped me, because it was probably the best news I've ever received. Let me back up a little bit...I saw Dr. Pardo at the end of July and he confirmed by diagnosis of ADEM. He also ran a few tests and sent them to the Mayo Clinic to be sure that nothing else was going on, like another auto immune disease since ADEM is auto immune in nature and my mom's side of the family has a large history of those disorders. Everything came back negative (thankfully), but he wanted me to get several MRI scans to check the status of everything and the extent of the damage done. I had to go two separate days for my MRIs. They had to be with and without contrast of my brain and entire spinal cord. Basically a full body scan...and they took forever. I had mixed feelings about it too. While I was excited to see how things look, I found myself really anxious. I thought I was fine with all of it and ready to get some more answers, but as the days and weeks passed following the scans, I was starting to think that maybe not knowing anything might be better. What if there was bad news? Maybe no news was good news? I'd rather be oblivious than get a poor prognosis.

Dr. Pardo had been in Columbia, working with physicians and researchers on the Zika virus, so it took what seemed like months before he got back to me. But almost four weeks later, I got a phone call at almost 8 at night. He apologized for taking so long, but said he reviewed my scans. Then did it again...and then repeated it again. The last MRI I had was at the beginning of October, before I went to Magee. And at that point, each MRI I got was shockingly worse than the one before it. At one point, the doctor even reported that I had a total infarct at T2, basically meaning that I had a complete and irrecoverable injury. Now, we know this isn't true because Dr. Recio determined that I had an incomplete injury and that the injury level was below T2, at T5. Since then, I've also received good news in that my ASIA level changed from B to C while at KKI as I started to get some movement in my lower extremities.

He continued by admitting that he fully expected to see brain damage in the images of my brain. Judging by the previous pictures and the extent of both the meningitis and ADEM flare, it would not have been a surprise at all. HOWEVER, there was absolutely nothing wrong with those pictures. There were some "patchy" areas, like in the area of my hypothalamus, which is the area that controls temperature. This makes sense because I'm still having some temperature problems, like sweating at the wrong times or feeling cold ALL THE TIME. He said those little areas are fully recoverable and that he didn't foresee any problems in the future.  Also, continuing with the scans, the rest of the spinal cord was FINE. Let me repeat that...IT WAS FINE! More than fine, actually. He said I only had some atrophy, which he would describe as "weakness," but we pretty much knew that already based on the current circumstances. Apparently, all I need is to continue therapy to get stronger and keep my vitamin P--aka, positive attitude.

I was overwhelmed with this news. Absolutely flooded with emotion. I've continued to be positive throughout this whole journey, but mostly because that's all I could do. What would being upset or worrying do for me? But to get the news that things really will be okay just reignited that spark of determination. So often, Dusty and I talk about the future and all our plans and things we want to accomplish and just hearing this news gave me such peace. It's not just talk. We really will be able to do anything. I mean, even if I didn't get back to 100%, I know he's still by my side and nothing is really holding us back, but to know that this really is just an obstacle that is only making us stronger truly leaves me speechless.

I'm currently reading Laura Story's book called "When God Doesn't Fix It." Mrs. Stile sent it to me and it has been such a blessing. (Which is kind of funny because Laura Story has a hit song called "blessings," but anyways..) She tells her own story about how she dealt with her husband having a brain tumor- what happened and how she handled it, both personally and spiritually. While my story is very different, there are so many things that I can relate to. She ends each chapter with a "myth" and a "truth." Basically, what she thought was true or what she previously believed, and then what she has learned or what God was teaching her. I'm only a few chapters in, but so far, the "myths" and "truths" she has talked about so far include:

Myth: Trials are a curse.
Truth: Trials are an opportunity.
She prayed "though we are on a scary new adventure and I have no idea where it will take us, I am willing to go." I believe I am your masterpiece, not because I feel it but because you say it. Though I can obsess about my deficiencies and insecurities, I know you designed me perfectly for the good works you set before me. Help me in this time of trial to follow in your footsteps, so that I may complete those works for your glory."

Myth: God's primary desire is to fix broken things.
Truth: God's primary desire is to fix my broken relationship with him.
More than healing us physically, God wants my relationship with him to be healthy. Jesus came to heal, but he doesn't always fix the broken things I want fixed. But if I allow him to, God will always heal my broken relationship with him. Understanding that doesn't lessen our desires to be healthy, but it does change everything else.

Myth: Salvation is gained by the things I do.
Truth: Salvation is gained by what Jesus did for me.
I think that's pretty self explanatory.

Myth: When things look dark, God is gone.
Truth: When things look dark, God's light shines the brightest.
My favorite thing from this chapter was when Laura was talking about James 1:2-4 ("Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.") How do you count the trials of your life as joy? She said "We all want to persevere in our faith. We want our faith to be 'perfect and complete.' But who wants to go through trials to make it happen? The problem is, perseverance doesn't come from listening to a sermon. There is no inspirational bestseller we can read that will help us plumb the depths of our faith. We don't become perfect and complete by sitting in church. We learn who he really is during the most desperate part of our trials. It's about meeting God where and when we need him most. Sure, our faith grows through reading Scripture and praying, but just as we don't know the strength of our body until we test it in a physical challenge, our faith isn't perfected until it's been tested in a spiritual challenge." She then made a comment about how all this doesn't necessarily mean that we should do cartwheels when bad things happen, but to simply hold onto God when these trials happen. It's an opportunity for us to look in the dark for those less obvious blessings and mercies of God that we might overlook in the light. When we do, God show us things that we otherwise might miss because his light is the brightest in the dark.