This trial prevails like nothing I have even been through or seen before. It can’t be compared, can’t be equated or grouped with anything else, and at times I think the misunderstanding from others could finish me alone. There’s a depth to it that can only be understood when you go through it yourself; it is the sole way you’ll understand the physical pain, mental, and emotional pain that constantly continue to come with the gravity of this disease, although I really, really hope you’ll never have to. It’s an invisible illness in every sense, and I realize really none of you will see the true colors of it displayed like Ethan and my family will, simply because you don’t share a home with me, so perhaps more light has to be shone on the unseen details. Extreme as they may seem, talk to anyone with chronic illness and they’ll tell you the disease itself is extreme…no choice of ours. If I can speak more about my own journey then perhaps others on similar journeys can be better understood.
The symptoms vary day to day but several are constant. I still try my best to do everyday, necessary things, but the normal things don’t quite come as easily anymore.
Bending over to put on socks in the morning brings pressure that rushes to my head.
Opening the side door to my school building on Mondays and Wednesdays requires more strength than I have, and I usually wait for someone near me to open it first.
Every single meal right now reminds me just how sick and abnormal I am, especially the meals I make it to at nearby restaurants with friends where my options are even slimmer. It’s one more thing that has been taken away.
It hurts most times to kiss Ethan whether it’s looking up with my head or the muscles used for the action, and it hurts to hug taller people whenever my neck has to turn too much for my head.
Going to bed is a chore for me. This fact so heavily discourages me because I can’t even find rest when rest is normally allowed. I need my four heat packs exactly on the right spots on my shins, stomach, and one in between the mattress and the edge of my pillow to hold my back up. My pillows remain propped up, but if they tilt too low at barely the wrong angle then my head pressure gets worse and I have to ice longer. Even when sleep beckons me to take part, it takes effort and keeps me awake while I rotate my ice pack from the front to the back of my head, taking it on and off every couple minutes so I don’t get nauseous from the cold. I can only fall asleep once my head is numb. In all my dreams I’m sick, and waking up throughout the night never comes without pain.
There’s. never. a. break. from it, I can’t do anything to hold it back, walk away, forget about it, leave it at a certain time, wait for its end on a certain day…I always have to carry it and its grief on top of any other thing I have to experience in life, good or bad.
I was recently told my white blood cell count is too low for my immune system to turn around with all the treatment I am doing. For this reason I started the neurofeedback, to correct my brain waves and train my brain to help my body receive all treatments. If my white blood cell count doesn’t increase, this can turn to be more life-threatening than it already is. All the while I’m going back and forth thinking, this feels like every part of my body is trying to destroy me, like I’m dying, what if my body rejected all treatment and I really am, and today was a better day because I didn’t have a migraine and I could walk up the stairs.
It feels like I’m a shadow of this person I once was, waking up each day to mourn the different life, health, friends, experiences, and losses that I am forced to face now. This can’t be true, that my 20’s, which are meant for the freedom to do all the things I can imagine, have been ransacked and surrendered over to a greater dictator.
You can bet I’ve already made my new bucket lists, longer than anything prior, with a majority of things I took so heavily for granted before. Things from sitting in the sun and being able to earn an income in some way, all the way to waterskiing and zip lining.
Last night Ethan had to cut my meat for me because my arms were too weak, and this morning began with discouragement as my list of wedding/school/house/other to-dos and a hopeful enjoyable day gets postponed another week—instead heat packs and slow movements fill my time. Every delayed project or canceled event is a reminder of my sickness, on top of the hourly symptom reminders.
I love spending time with friends, I need that time, but I also drive away at the end of the night feeling the heavy difference between us and the isolation because of this disease.
Lately the pain seeps deep in more areas than one, and it rears its head more often. Most days I am barely making it back from class before another migraine starts. Ethan takes over on my study guides, while Katie fixes my dinner after coloring pages for me in my neuroanatomy book. Ethan walks me or carries me to the bathroom each time during these high pain days, and as we walk upstairs he speaks encouraging words to me for each. stair. until I make it to the top. And yes, sometimes I cry at just that glimpse of his beautiful heart.
I forgo my usual backpack this semester of school because my large purse better holds my detox drops, painkillers, vitamin B2, sunglasses, ear plugs, and ginger pills that I consume each day to keep the nausea down. A classmate next to me knows of my journey, and whispers “I’m proud of you for coming to class today,” without me even telling her how much of a struggle it is on that Monday morning, and I receive a package later that night with a box full of encouraging scripture verses for me to pull from each day from a newer friend, simply because she “doesn’t want me to feel alone in this.” My aunt and my future in-laws send regular texts with scriptures or encouraging points, sharing the good that will come. Oh.my.heart., when those who know so little, care so much. These are the people who lower themselves to carry me on their backs, recognizing the need to lift me higher towards Christ through this race instead of sitting on the sidelines watching.
“Hope” keeps rolling its way over the areas of my mind; I’m trying to visualize, rationalize, understand, argue, debate, and cling to the meaning of this word.
I’m learning it’s equally about looking towards the things to come as it is a person. I find it really hard to visualize or imagine a reality much different than this; most times I’m overwhelmed by the feeling that I can’t see anything in the future because the present is too dark in itself, that maybe this tunnel won’t end and this is actually one long, everlasting night. But this whole hope in the Lord thing? I’ve hoped I would’ve been better, graduated, and married by now, but the disease hasn’t shown any signs of quitting so far, so what does that say of hope? How do you shape hope around a person when you can’t even say for sure what hope means?
And yet we need this hope just like we need our next breath. If it’s not this hope that is keeping us alive, then what is it? If it’s not hope that fills our dreams then why do we keep dreaming?
To hope in God, it turns out, is really to hope in His character. This person that He was, and He is, and He (contrary to our doubts) will be. God is always good, and clinging to that truth is building a solid hope for my days. He’s always good and this means He will always bring good from every bad that I face. No matter how much the enemy keeps me down, he will never win, for winning is the Lord’s, and all the good is the Lord’s. Where would humanity be if there was no good to hope for? This Hope calls out to us each day, reminding us of our dependence on Him.
We are awaiting a glorious glimpse of His face, hoping that the very sight of it will balm our cracked souls and heal our breaking worlds. That even one holy breath breathed upon our lives could restore them altogether. That we could reach up with arms strained and eyes searching, hoping to even brush the train of the King. That maybe the Masterpiece Maker Himself would come down to touch the hearts of the hurting.
As my aunt says, what appears on the outside to be continual endurance to others is actually small (large for us) gifts of God’s grace. This grace we come to know on a much deeper level than we ever would’ve without this trial. That I somehow make it home each day before a migraine hits. That I am barely able to finish each class this year. That one person makes it to the heavy door before I do. That I wake up each day and I’m still breathing. That the injection hurt less on this already awful day. That my migraine was 10 hours instead of 15. That the doctors caught this growing disease at the time they did.
This is not our patient, strong and victorious fight, but rather our deep dependence on the One who breathes grace just as it’s needed.
The One Who is gracious enough to give us a taste of His great love, each minute and each hour.
Often the pain seeps too deep and the others won’t know, just how deep and how wide the chasm lies below.
But when heartbreaks bear heavy and bring on the tears, we cling to the hope that Love conquers all fears.
And it’s the only way. He’s the only way. All our directions on this confusing map point up. Up, so we can watch His grace rain down on us in a refreshing shower of Love.