I continue to play wack-a-mole with my symptoms. I don’t feel like I am moving forward or backward. I’m just desperately trying to keep my head and the heads of my dependent little ones above water. I am exhausted. I collected a couple more probable diagnoses: Mast Cell Activation Disorder (my body thinks that it is allergic to pretty much the entire world and produces too much histamine. This makes me feverish, achy, dizzy, itchy, and miserable.); Ehlers-Danlos Syndrome (my body has too much collagen in joints, skin, and in my vascular system. This makes me stretchy, which is cool in theory, but not cool in reality. It hurts, really badly, because my body is trying to hold my joints together, and my veins and arteries don’t properly circulate blood). These two diagnoses often occur with the POTS diagnosis. So we try ten different kinds of medications, desperately attempting to add a couple pounds, and cross our fingers that my quality of life can start to creep up somewhere above just staying alive.
I have also completed a series of neurological testing (6 hours, total), which yielded fascinating, albeit somewhat discouraging results. My short term memory, attention span, word recall, and executive functioning skills are suffering. They aren’t horrendous, but juxtaposed with my actual IQ, they are remarkably low. The neuropsychologist says that this is directly caused by the POTS. Limited blood flow to the brain and times of hypoxia can lead to brain function that looks similar to mine. Interestingly enough, so can traumatic brain injuries. Fortunately, if the POTS symptoms can remain under control, my cognitive function will not continue to decline, according to this guy, but he made no mention of any possible improvement; only coping mechanisms: the same ones that they provide for someone who has a traumatic brain injury.
I like to consider myself to be an intellectual, a deep-thinker, a writer, a teacher, a nerd. This whole cognitive decline thing is a massive blow to my ego and to my self-image. What is interesting, however, is that with this illness that has robbed me of my ability to remember conversations that I just had yesterday and caused me to have to think for a full 30 seconds to remember a word as simple as “book”, I have come to a deeper, more beautiful, profound understanding of my Savior than I ever thought possible. Cognitive decline is terrible, painful, and humiliating, but the “knowledge” of my God who meets me in my sickness, brokenness, and suffering far surpasses any knowledge that a fully functioning brain can attain without Him.
Ephesians 4:14-19 says,
For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named, that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith—that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God.
I love the contrast of the two forms of knowledge presented in this passage. God calls us to an experiential, face-to-face knowledge of Himself, a knowledge that, through the power of the Spirit, allows us the ability to experience the breadth and the depth, and the length, and the height of the magnificent love of Christ. This knowledge is not the form of cognition that I have lost. I know more of this Christ now than I ever knew before the POTS and the EDS and the MCAD and all the other health issues that are present in my body.
God’s kindness prevails. His goodness is undeniable. God’s presence is here, in the midst of my suffering, as we wack the mole that rears its ugly head at any given moment. This is the knowledge of the Holy attained as sickness of earth ushers me into the sacred this spaces of heaven. I don’t know that I would trade it. Yes, it takes me a crazy long time to write sometimes incomprehensible blog posts. I can’t follow a train of thought as far as I can throw it. But I know the Christ of my salvation, my suffering King, and He loves me.
No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.