I’ve been trying to write this for a while now, but each time I get stuck. Ever since embarking on this journey, leaving for my mission December 2, 2015, I’ve had insights & experiences which allow me to learn about & live in a different mindset or lesson every few weeks. These lessons have comforted, taught, chastised, & motivated me to become better, more of the person Heavenly Father would have me be. When the new mindset comes I try to embrace it, looking for the pieces to the puzzle until I feel I truly understand what I am meant to learn from that particular chapter.
Lately I’ve been stuck in “hit the ground running mode”, uncovering that this particular chapter is about preparation & reassurance; walking into the unknown confident I’m where I ought to be & that it will all work out. I’ve had the same thought come to me over & over again, “Self Discipline, Obedience, & Accountability”. It’s been more clear with each visit to the doctor & potential diagnosis that this will not be easy.
I met with a neurologist at the University of Utah on May 16th. Looking back I feel blessed that he was assigned my case. He did his residency in the Midwest at the Cleveland Clinic; a place people go when no one seems to have the answers. I wonder if another doctor would’ve been able to match everything up. He was kind, answering all of my careful questions & spent the better part of two hours with us. After discussing my symptoms & performing a neurological exam he explained that he’d seen this a few times in Cleveland, but not more than once or twice here. He looked at me & said, “You know, I have good news & I have not so good news. The good news is that I kind of have an idea of what’s going on, but the bad news is that… Umm, it takes a long time to get through this. It’s not something that happens overnight, it takes a very long time. Some people get better & some people don’t, but a lot of it depends on you & how much effort you put into it. But, this can be tough to deal with & we’ll talk about why.”
He’s confident I contracted something called Neurological Dysregulation Syndrome. It’s rare & hard to study so they don’t know a whole lot about it, so little actually that next to nothing comes up in a Google search, but this is what he offered, & I hope you’ll forgive me for quoting him so much. It’s difficult to explain & since we had a recording I thought this would be easier. He said, “It’s very difficult to clearly pinpoint exactly what happened. In some people we suspect it’s infectious in nature or the result of a bug bite, but for some reason the nerves that you have are compromised. As you can imagine this is very difficult to study & we don’t know a lot about it, just that the nerves don’t function properly. It’s unusual because we just don’t see it, only every now & again. We try to treat the symptoms as best as possible, document the outcome to see how you’re doing, & try to resolve each symptom as best we can.”
“It’s a very difficult disorder to deal with on many different levels & you’ve probably already seen part of that. As you can see it’s easy to just sit around & lay in bed all day because you don’t feel well, & those are the patients that don’t get better. But there are those that will go out & get a job & try to do things, & obviously this is still a big part of their life but they are able to manage it & deal with it, living a semi-normal life. It’s very difficult because patients are desperate. They were fully functional before & within a matter of months they’re completely debilitated, they don’t know where to go, & they’re very much hopeless. It’s not easy, but it is possible to see improvements. I’ve seen patients work, go back to school, & get married. It’s doable, but it’s very difficult I think to retrain your body. Obviously this is a major thing, it just takes time & a lot of training your body to relearn. It’s like the nerves for some reason are just gone wonky & they’re not doing the things they’re supposed to. But hopefully the more you do the more they’ll get accustomed to what they should do, it just takes time. It’s very difficult because you really have to push yourself & be really motivated. I’ve seen patients wallow away & soon they’re bedridden & it’s even harder for them to make improvement.”
Then he talked a lot about management, not necessarily recovery. He was pleased with the neurological exam because although it showed damage, it’s nothing he thinks is irreversible. There are areas where the nerves are working & places where the connection is lost, but there’s potential for recovery. He said, ” The goal is to try & get you better to where you’re kind of able to go about normal life. I’m not saying that everything’s going to be perfect like it was before; it could be, but we just kind of have to give it our best shot & see how things go.”
Since returning home I’ve had these incidents where all of a sudden the fatigue just gets me. I never feel well, but all at once it will be really intense; I’m so tired I can hardly move, I’m slow to respond, the headache becomes overwhelming, my limbs hurt & often go numb, sometimes there are tremors, etc. When a wave hits me I just assume it’s time to rest or lay down, but over the last few weeks they’ve become increasingly intense & frequent. It will come on so fast & within about a minute I’m unable to move or speak. I just sit there immobile, only able to look straight forward. Usually I can think & see clearly again after 10 or 15 minutes, but I still can’t move or speak. After a while I regain some mobility. First the toes, then I can shake my head yes or no, & very slowly movement comes back. Speech is always the last to return & afterwards I’m very sore, tired, & my limbs are numb for a while. The whole thing lasts 4-6 hours until I’m back to normal. It scares me. if it comes on when I’m alone I just sit there until someone finds me or I can move again. I don’t always remember everything that happened or where I am. I just cry because it hurts so badly & I’m scared.
Other times it’s like I’m having complex migraines, as if my brain gets overwhelmed trying to process everything & freaks out. All at once I’m extremely sensitive to motion & sound. I’m usually somewhat sensitive, but when this happens not even earplugs or noise cancelling headphones do the trick. Sometimes I can tell it’s coming on. I become really distant & can’t concentrate or focus my eyes; I describe it as my brain going into a fog & I just sit there watching & listening to everything going on around me thinking it’s too much. It’s almost like my brain can’t process all the talking or the movement of someone’s head turning so it shorts out & then all at once I can’t handle it anymore & it becomes traumatic. I want to scream for everyone to stop moving or making even the quietest sound, but I can’t. I just cringe & wish for silence. Even the sound of someone whispering, touching me, or sitting next to me is disorienting & so painful it’s distressing. Someone helps me get somewhere quiet & I plug my ears & cry until it subsides. Obviously these incidents are concerning, & frankly they leave me scared & wondering what on earth is happening.
So, to wrap things up, I was probably bitten by a bug or got an infection that started out as something normal, but instead of resolving itself as usual there was a complication & it attacked my nervous system. He described it as the brain having pathways & codes for actions, but this comes along & encodes incorrect pathways, leaving me to re-teach my brain how to do things & what is normal. It’s as if I’ve forgotten things & need to relearn. It affects one system at a time, which explains the new symptoms every few weeks. It was also discovered that I have a structural abnormality in my neck called vertebral subluxation, so between the two of those, it’s clear why my life often reflects chaos. It seems like every two weeks there’s something new, a recurring bloody nose, acid re-flux, dizzy spells, TMJ, ringing in my ears, nausea, cloudy vision, trouble sleeping, the incidents that act a lot like partial seizures & complex migraines, etc.
The hard part is that it takes a long time. There’s no cure or magic pill that will take away the pain & problems, but we’re confident I can improve. He talked a lot about how improvement is contingent on effort. Hopefully the more I work at it & try to live normally the better it will be. This is where the mountains come in. I have no doubt there will be hard days ahead. More incidents, bad days, & unexpected twists & turns in the course I’m trying to run. It’ll be a lot of run hard, crash, & pick myself up again. Keep going, push through the hard times, fight through the pain… crash & burn, go again, crash, repeat.
To be honest, it’s been really hard, but I’m learning so much & that’s really made a difference. I would tell people over & over again in Chile that life with the Gospel isn’t easy, but it’s definitely easier, & it’s true. I’m so grateful to have the Gospel of Christ in my life & the knowledge that I do. It allows me to see the light in the darkness & realize that although my situation might be less than ideal & not at all what I had planned, it’s an opportunity to grow & become more like Jesus Christ, & that allows me to press on.
So, I’m enjoying a long ride on the struggle bus, but also becoming more aware of the tender mercies I’ve been blessed with. It’s easy to get discouraged & think that this will last forever because sometimes I go weeks without any sort of better day, but I’m trying to make a habit out of finding the good. Here’s what I’ve noticed as of late: By some miracle I got another appointment to see my neurologist last week. He went over the EEG – A test where they glue a bunch of electrodes on your head & when you have an incident you push a button & it marks it while recording your brain activity. – & assured me that there was no epileptic activity, so the possibility of seizures is no longer a current concern. He told me that although my symptoms mimic a lot of really scary health problems I’ll be okay & I just need to push through. I’ve been going to physical therapy for the last few months & I’m walking a lot better now. For a long time after I returned home I couldn’t walk without bracing myself on walls or hanging onto someone’s arm because I was so weak & my balance so poor; but I can walk again. It’s not especially graceful & I often still need to rest or stop because I’m dizzy & unbalanced, but it’s coming. At therapy last week I ran for a few minutes on the treadmill. Granted, I was holding onto the bar & kept tipping from side to side, but for the first time it felt like I could have my life back again.
So what’s wrong with me? Why am I not ecstatic to finally have an answer & an explanation? I should be happy. I should be at peace & I should be grateful. Sometimes I am & sometimes I need a little more time to be happy, at peace, & grateful for this.
I’m happy to have the Gospel of Jesus Christ in my life. Really, really happy for this gift, these truths, & the bliss that is being overcome by the Spirit & knowledge of the Gospel. I’m at peace because of the truths I know & hold so dear. Someday I’ll get a resurrected body. Someday I will run & not be weary & walk & not faint. Literally, I will not have to wonder if I’m about to faint! I’m at peace knowing He has a beautifully intricate plan & that it will all work out. Obviously it’s not my plan & I’ve had to do a lot of adjusting, but I know there’s a plan of happiness for me. I’m grateful to know that, & mostly I’m just really grateful for prayer & that I can feel peace when I tell Him my fears, & that I can ask to be happy where I am & in these circumstances. I don’t always feel very grateful for my situation. I actually feel really sad sometimes & pretty lost in what to do, but I’m recognizing all that I do have & feeling grateful that the Gospel is always constant. It is my anchor. I don’t have to be strong all the time, that’s not what He asks of us, but He does ask us to have faith, to trust Him, & to believe in good things to come.
I feel like the current bush sometimes. Do you know that story?
Sometimes that’s me. With tears streaming down my face I think, “Why would you do this to me? How could this be the plan? I just wanted to serve my mission, I was learning, growing, & starting to enjoy it, but you’ve cut me down, taken my legs out from under me. Everyone will look down on me because I didn’t get to serve for 18 months, because I came home early. I was trying so hard to be good, to do what’s right; I’ve done everything to measure up. How could you do this to me, God?”
But He says, “Look, Makayla, I am the gardener here, and I know what I want you to be.
Sometimes I really have no idea what I’m doing with my life, or what challenges tomorrow will bring; so, for now it will suffice me to say that I’ve got some mountains to climb & leave it at that. It’s going to be hard, I know that. It’s been hard & I’ve been told it’s going to get a lot harder, so although sometimes I’m confused & worried & scared & altogether really lost in what I’m supposed to do & how I’m supposed to do it, I’m also accepting. I know that trials & afflictions bring us to Jesus Christ. As an answer to prayer in the CCM I was told, “Hermana Holt, you need to suffer”. So, here we go. Bring it on, give me more, aid me in healing, & help me become. I’ve got a lot of mountains to climb, but I intend to hit each mountain running & someday I’ll say, “Thank you, Mr. Gardener, for cutting me down; for loving me enough to hurt me.”