MS Joy

Growing up, one of the things that was often on our one channel of English Language TV were Sci-Fi TV shows like Star Trek, Next Generation, and Quantum Leap. I fancied myself quite the SyFy nerd. I was surprised to find out later in life that I actually was NOT a Sci-Fi nerd.

One show I enjoyed though was Quantum Leap. For those of you less SyFy educated than I am (bless you!), Quantum Leap was about your typical physicist who somehow stumbles into a cycle of “leaping” from one reality to another reality (and from one person’s life into another) so he can fix mistakes made by other people in the hopes of ultimately leaping home to his life. And as the series came to an end, Dr. Sam Beckett leaped back home to the life he left.

I really thought I would encounter more time-space continuum issues as an adult than I do, tbh.

Nineteen months ago (exactly!), I leapt from my known life, into a new reality–one that I can’t leap out of, but now I am not sure I want to. When I was diagnosed with MS, from the outside my life didn’t change all that much beyond the healing of my physical symptoms. I still woke up (though I slept less and less), I still went to work, I still spent time with family. And I still order(ed) too many packages from Amazon.

But my internal reality is different. My body aches. Almost all the time. I have migraines so intense that the pain make me catch my breath. Dizziness and numbness are just a part of my day–I promise I am not drinking at 7:30 AM. I joke that I need a shirt that says, “I am not drunk, I have MS” because it’s easier to explain it as a joke than to admit that there are things that I cannot control.

But this leap is not one I am going to leap away from once I fix what went wrong. While there are promising studies out there concerning an MS vaccine and MRNA technology, I am still affected by an incurable disease. This is not a disease I will recover from–I am in remission (for lack of a better term!) but a relapse is always a very real possibility.

I truly believe that before I was formed in my mother’s womb, my current life was known to God, and my purpose was set to include MS. I have said it before and I say it to myself every day–there is a purpose I have in Christ that cannot be completed with a healthy brain and spine. My purpose, from March 24, 2020 on included this disease.

It didn’t simply include it tho. It required it.

Things we call “bad” happen to God’s children not because He is uncaring, unloving, or vengeful. I think “bad things” happen because without those experiences we cannot be who He wants us to be. And if we cannot be who He wants us to be, then we cannot complete His purpose and path for our lives.

Did I feel this so deeply and passionately 19 months ago? No. Not even 9 weeks ago. In the depths of pain, sorrow, and despair, we can’t see the purpose for the pain. But as I see time wash away–day after day and week after week, I see God showing me how the pain truly does have purpose.

One song I have clung to for years now is “Thy Will” by Hillary Scott of Lady A fame. When I don’t get it, I turn this song on repeat and listen, letting the words pour over me and sooth my uncomprehending heart. The lyrics, in part, say,

I know You’re good
But this don’t feel good right now
And I know You think
Of things I could never think about
It’s hard to count it all joy
Distracted by the noise
Just trying to make sense
Of all Your promises
Sometimes I gotta stop
Remember that You’re God
And I am not
So

Thy will be done

No–MS doesn’t feel good. Right now, or most of the time. No–I don’t always count it all joy when I can’t stand well or walk a straight line, or when I stumble and fall.

But God comes through in the ways that seem little, but are in fact HUGE. Like…

Living in a country where I have access to the best medicines and top researchers in my field of need… and having a doctor that pushed my case through to receive the best out there for my disease.

Providing a job closer to my family–prompting me to sell my home in my comfortable little city, and move closer in to my new community.

Providing a house (thanks to my sisters detective skills and my realtor’s intelligence and knowledge!) that not just meets my needs, but surpasses them. (Just ask me about the master bathroom… and the flooring… and the location… I will stop. I could go on for a LONG time!)

Allowing me extra time with my sweet parents as I wait for my house to finish construction–these moments and days are precious. Even if I go to bed at 7:30 PM many nights.

Does having MS feel good? No. Does losing a loved one feel good? No. Does being forced to leap when we aren’t ready seem good? No.

But ask God–as I do every day–how can I see the purpose amid the pain? It may not change the pain, but it does change the petitioner.

Growing up, I was not a particularly fearful child. In fact I imagine my parents got a more than a few gray hairs from the shenanigans I pulled. I was the definition of ragamuffin mixed with a little bit of dare devil.

I did have some of your usual childhood fears: Grasshoppers in the hallway, wet towel flicks from my brother, or the first night away at camp. I also had some fears unique to growing up in South Korea: our run away dogs being eaten by someone for dinner, riots and tear gas, and some of the meals we were served as guests in a local church. (Don’t worry–our dogs always turned back up safe from the soup pot. Despite our dad telling us not to worry, that our dogs were too sinewy to make for a good meal, I did always worry until they were safe at home.)

It wasn’t until I was older that I learned to fear things. I began to be afraid of speed (yeah–like going really fast!) when I broke my arm roller skating down a hill. I learned the fear of abandonment when my siblings accidentally (?) left me on the US military base after school one day and my dad had to drive the 30+ minutes to pick me up. I learned the fear of heights when I climbed up the gate at our house and got stuck up top and it took me at least an hour to come back down.

And it wasn’t until I was diagnosed with MS that I learned the fear of singleness. I haven’t always loved being single–I have had times of contentment, but my desire to be married has always simmered just beneath the surface. But until I was diagnosed with this disease, I was never afraid of ending up alone for the rest of my life.

I have learned a lot of useful things in my life as a single woman. I put up the backsplash in my kitchen with minimal help from the guys at Home Depot and a few teary conversations with my dad. I know how to change a tire–though living in the South means I have not had to actually do that because every time some gentleman has stopped to help me. I know how to unstop the toilet, relight my water heater, and how to find the stud in a wall. I can hang pictures (and they are level!), cook a fancy meal, and take apart a vacuum cleaner and get it back together.

I am pretty handy. Especially since my parents gave me a toolbox and drill set for Christmas.

I never worried about myself living alone until March 18, 2020. And now I find my mind being filled with what-if’s and (sometimes) overwhelming anxiety. What will my future look like? What will my disease look like when I am 55? 65? Who will pick me up (literally!) when I fall?

But…

Fear is a real thing. We all live with it in our lives. We all have parts of our lives controlled by that unknown something that sneaks in and gets you when you least expect it. No matter how often we hear “Let go and let God” or “We have nothing to fear but fear itself…” fear is a motivating factor in our lives. While both sayings hold truth, both are also trite condescensions. They belittle the core of our fear–our humanity.

God did not create us to fear, but He created us knowing that fear was going to be a part of our every day lives. Imagine the quaking and shaking Adam and Eve did in the Garden when they were waiting for God after the fall… God knew that their shame and guilt would also lead to fear. God already knew of their sin, shame, and fear but He came to the Garden anyway. They were not alone.

And from that day forward God has reminded us that we do not have to fear this world or what comes at us in our lives.

God tells us over and over again–do not fear. I am with you. The I AM is with you.

And I am not alone.

I will strengthen you, He says.

So when my muscles are weary and my body and soul grow fatigued He will be my strength–and my song.

I will uphold you with my righteous right hand, He says.

And when I have fallen and need help rising, He will lift me on wings of eagles.

Do not fear–I am with you, He says.

And I am not alone.

In the beginning was the Word, and the Word with with God, and the Word was God. He was in the beginning with God. All things were made through him, and without him was not any thing made. In him was life and life was the light of men. The light shines in the darkness, and the darkness has not overcome it.

John 1:1-5

When I was a kid, we went to the beach every summer. We had a cabin (#85) and we spent about a month with our friends, and family. We had tennis tournaments, musicals, the most amazing bakery (with cinnamon rolls to die for!), swimming lessons, fresh produce, and water skiing. I know it sounds luxurious, but I remember when we got a hot water heater in our cabin. Street lights were non-existent. But I wouldn’t trade those summers for anything–days filled with swimming, playing, reading, and the mandatory rest hour, and nights with musical practice, vespers, and playing capture the flag in the pitch black.

When I would head home at my curfew time, I had to walk up a BIG hill with something like 89 stone steps, and then up the rest of the hill. As I turned onto our “road,” (I use that term loosely!) I always knew which cabin was ours–without having to think. My dad had a huge kerosene lantern that he had put on our front porch and he lit it every night so we could find our way home. It was so pitch black on the stairs up the hill that when I got close to home, there was almost a beacon of light ensuring my safe arrival.

It was comforting to know I was almost there. And that my path was well lit. (Did I mention my irrational fear of snakes and frogs? Yeah….)

This week, my bible study has been out of John 1, verses 1-5. As I worked my way through the study and the verses, I kept coming back to John 1:5–like that beacon of light guiding me.

The light shines in the darkness, and the darkness has not overcome it.

John 1:5

I have probably read this verse a thousand times, and each time I missed something so important–verb tense. My dad taught English (before my time!) and so he is who always corrected my grammar homework, and helped me diagram sentences (UGH!!!). So I should have noticed that John doesn’t say, “darkness didn’t overcome it.” He said, “Darkness HAS not overcome it.” Present tense.

Today.

Right now–in this moment.

In my time.

In my life.

Darkness HAS not overcome.

One of the questions in my bible study yesterday kicked me in the gut. Like poleaxed me. It said, “How does knowing that ‘All things were made through him’ encourage you?” My written response was, “Yes!!! God does not make mistakes!” And below it, I wrote

My MS is not a mistake.

I wrote it without thinking twice. Which (I hope!) means I genuinely I believe that my MS is not a mistake. Because God does not make mistakes. And if my MS is not a mistake, then God has a purpose and a plan for me that I can only carry out because I have MS.

Because of my diagnosis, I have started to pursue a new career path in my field.

Because of my diagnosis, I have started writing again.

Because of my diagnosis, I see grace more fully. And try to extend it to my fullest capabilities.

Because of my diagnosis, I ask for help instead of stubbornly saying, “I can do it!” and allow others to minister to me. (Asking my brother in law to change a light bulb was hard…)

Because of my diagnosis, I see that the darkness HAS NOT overcome it.

Nor will it.

Today is Christmas Eve Eve. December 23, 2020. I feel like I blinked and the longest year ever has (almost!) come to an end. Oxymoronic, I know.

As a kid, Christmas was magical. My parents worked hard to make sure we never missed out on traditional Christmas family things–even though we were thousands of miles away from our blood kin. Our missionary aunts, uncles, and cousins filled the void we didn’t even know we had.

And somehow, Santa always found our house.

This year has been… so much. I hear people talking about 2020–wishing the year away, rolling their eyes in frustration, and chalking up all negative experiences to “2020…” And I am guilty of doing and saying that too–like 2021 will magically be better simply because it’s not 2020.

But this year… I wouldn’t trade it for anything. Maybe it’s because I just celebrated my birthday, or because it’s the end of the year, or because I have been through a lot this year… but I see 2020 as a gift.

As a child I used to love to pour over the JC Penney’s catalogue, dog-earing the pages that had my dream toys and clothes, and wondering if Santa had JC Penney’s at the North Pole. And on Christmas morning I had gifts beyond my deserving–most bought from the Korean Market, not JC Penney’s. And it didn’t matter. The reality of Christmas morning was more of a treasure than any JC Penney’s catalogue could deliver.

Mom made coffee cake and breakfast casserole. Dad probably had to keep Mom from waking us up ridiculously early. She was usually more excited about Christmas morning than us kids were.

Dad always had his coffee in one hand and a camera in the other. We never made a huge mess–mom made us carefully unwrap the presents so she could keep the paper for the next year.

But we were always together. Safe. Happy.

This year feels a lot like those Christmas seasons from long ago. I spent the first few months of 2020 looking through life’s version of the JC Penney’s catalogue, dog-earing the pages that had things I wanted or hoped for.

And day by day as I unwrapped 2020, none of it looked like I had hoped or like I had dreamed it would. But it was ok. I wasn’t disappointed when it was all said and done. The reality of the gifts of 2020 far outweighed the hopes and wishes I crafted so carefully just a year ago.

See, I am safe. I am happy. I am not alone.

So while I wouldn’t trade this year for anything–I certainly don’t want to relive it. It was hard. It was disappointing. It was discouraging.

But it was foreknown.

Anyone who knows my Dad, Virgil, knows how much he loves dogs. I think I inherited that love for them from him. Growing up, we had some amazing dogs–some I loved in person, and some I loved in stories told after they crossed the rainbow bridge.

One afternoon when I was in the 7th or 8th grade, I was walking home from school in Korea, and I saw a dalmatian on the side of the hill. I was in love immediately. He was the sweetest, gentlest, most friendly guy. Now in Korea, dogs were not pets until recent history. So seeing a BIG dog like that was rare, and seeing one that was a breed I knew was just as rare.

Well… because I have the best/worst luck in the world, I went home and told my parents… and within a few days, Toby came to live at our house. See, Toby’s first owners were looking to re-home him. So as fate would have it, Toby was ours.

I absolutely loved that dog. He was smart. At night, he would wait until my parents went to sleep, and he would sneak up the stairs from his bed in the entry to my room and sleep with me. When he heard my dad get up to turn on the hot water heater, he would sneak back down stairs.

Toby made my transition from awkward new 7th grader at my school to awkward returning 8th grader at my school. He heard my sorrows, he licked my tears, he loved me when I wasn’t sure what there was about me to love. I wish I had a picture of Toby. He was the goodest of boys.

He died when I was in the 9th or 10th grade. He had kidney stones and the Korean vet had no clue how to help him… and in the end it was kinder for him to pass than it was to keep him with us.

When I achieved adulthood, my goal was to finally get a dog of my own. It wasn’t a house. It wasn’t a car. It wasn’t a specific job. It was a dog. And when I was 30, I got Wally.

He was the goodest of boys. At first I loved him but wanted someone to take him off my hands. He was needy. He was exhausting.

He was a puppy.

He also was my confidant. He heard my woes, he heard my joys, he heard my rants… and of course he was the best secret keeper. None of the things I told him ever made their rounds. He helped me through hard times–times I wondered if they would ever end.

And when he crossed the rainbow bridge, I never thought I could want another dog again.

And then I met Buddy Watson.

He is so different than Wally was–but he is just as good of a listener.

And he has helped me through the hardest time of my life. Over the last 7 months of my life, he has snuggled my hours of sleeping away. He has licked my tears–no matter how much I try to stop the face licking. He has heard me rail with frustration, sing with praise, and fall with exhaustion into a deep sleep.

I haven’t written in a while–mostly because I am so busy. And mostly because I haven’t had much to say. I have been in a holding pattern–between treatments and waiting for the MRI that would tell me if the drugs were doing their jobs.

It was 3 months of panic every time I had a headache that another lesion was forming. It was 3 months of second guessing my loss of balance. 3 months of looking for signs where there were none.

And Watson was there for it all. He made me get out of bed to take him potty. Or to the vet when he got chewing gum on his toe nail and I thought it was an infection. ($50 later, the vet and I both had a good story…) He went with me everywhere–to my parents, or my sisters… and never complained about my driving. God had given me this guy to look at and to talk to when I was really talking to God.

Funny how that worked out. When my faith felt lost, God used something I love to bring me comfort. Sometimes God gives us the tangible because He knows our faith needs something we can hold onto, something we can see, and something we can touch. (But… sometimes He doesn’t.) I guess for me, that seems to come in the form of dogs. That is truly their secret calling, I think.

This need of mine–to have something to see, feel, touch, and hold–didn’t make me a faith failure. Instead, it reminded me that I am human.

I had forgotten, for a brief span of 3 months, how big our God is. I was so assured and so embraced from March to July. During the hardest time of my life–the time when walking away would have been what some people had chosen–I drew nearer. I loved God more and felt more loved by God than I have before.

And I don’t know what happened. All of a sudden I was living a life of what if’s and fear. What if I do have another lesion? What if I do have to go in to the hospital again? What if these symptoms never fully go away?

And instead of saying, “It’s ok if it’s another lesion. God is not surprised.” I said, “I am scared.” Instead of looking at another hospital stay as an opportunity for God to enrich my story and my faith, I saw it as a sign of yet another failure of my body. Instead of using these symptoms as an opportunity to rely on God’s strength, I saw them as proof that I was not in control of anything. (And boy was I right on that one…)

But our God–He is BIG. He is the BIGGEST. And when I limit my thinking, my hope, my faith, I limit God. When I said, “What if it’s another lesion?” What I was really saying is, “God isn’t big enough for this…” When I said, “I don’t want to go back to the hospital!” What I was really saying is, “I won’t follow you there, God.” And when I saw these symptoms as hopeless, I was saying to God that He could not fix this.

My faith limited how I saw God. But… God didn’t let that limit stand.

Today I got the best possible news from my neurologist. She said my MRI scans showed that my MS is stable. Stable. Not a word I ever thought would bring me joy. But they brought me joy and thanksgiving.

And clarity. If I had been struck in the head by a 2×4 it couldn’t have been more clear–God is bigger than my fear. God is bigger than my MS. God is bigger than my faith.

And God is bigger than your fear too.

This summer has been one of the most remarkably different and unpredictable summers I’ve experienced… IDK… ever? Between COVID, MS, and yet ANOTHER new classroom & school, my summer has been the Macy’s Thanksgiving Day Parade. A chaotic spectacle and midway through, I am shaking my head asking myself, “I woke up early for this?”

If we just had the wacky floats or fabulous balloons, that would be one thing, but we seem to have thrown in a random soap opera star singing “Danke Shoen” while tap dancing. Can we say #extra?

One good thing that came out of my wild and wacky summer was getting to babysit the most adorable 4 year old and 16 week old ever. They are a completely social distancing/quarantining family. And because of my unstable immune system, so am I. Going to their house four times a week means I have a routine, I am building up stamina, and I am around people who need me.

It’s important.

The four year old, J, is precious. Not too long after I started, he and I had a long talk about the “bruise on my brain” being the reason I can’t ride his scooter… that and it’s designed for a four year old, not a forty-ahem year old. When I left that particular day, he asked if he could kiss my bruise and make it better. Cue heart melting and tear shedding.

This week, Baby A has been particularly active. She loves to bounce and play and do all the 4 month old things. And she absolutely adores her brother, J. At one point we were playing and A was squirming in my arms trying to contort her body so she could see J and I thought, “When this girl starts to walk, there will be no stopping her…”

Innately we seem to connect the ability to walk to being independent–when A gets her feet under her, she will be ruling the world. In my mind I was truly thinking that this sweet girl was going to run everyone ragged when she finally starts to walk. Things that were once safe and unexplored will become fair game–including Rip the dog and Riley the cat.

One of the first things I truly lost when my MS relapse was at it worst was my balance–and my security in walking. So my independence was suddenly lost as well. While I only bit the dust a few times, it was embarrassing and horrible every time. I hated my body and it’s failure to just be normal. I went from completely independent to a complete crumpled mess in no time flat. I can laugh about it now, but it was dicey at the time.

The one time I had the bad luck to fall in front of my dad may have scarred us both for life. I learned that day that questioning my choice of footwear was actually a previously undiscovered expression of love. #truestory #HiddenLoveLanguage

A few weeks ago, God kept bringing to mind how weak I am without Him–that my independence is just a smoke and mirror trick I use to feel like I am in control. He reminded me that my feet work at His command and for His purposes. Our sermon that week was from Matthew 14–where Peter steps out of the boat into the storm. In this passage, Peter shows great faith by stepping away from the security of the boat to move towards his Savior.

Mid-way, Peter begins to doubt and thus begins to sink. My pastor said something here that really got my attention. He said that at this point, Peter knew Jesus could stop the storm in it’s tracks–he had done that earlier in the book of Matthew. But Jesus didn’t do that this time. Instead Jesus reached out, and took Peter by the hand and walked with him through the storm to the safety of the boat.

I have been praying consistently since my MS diagnosis for God to take away this disease. Remission isn’t good enough in my mind. I want it gone. But that isn’t the path God has chosen for me. God could stop this MS storm in its tracks, but instead, He has reached out and is walking through it with me.

³² And when they climbed into the boat, the wind died down. ³³ Then those who were in the boat worshiped him, saying, “Truly you are the Son of God.”

Matthew 14

Though I am not safely in the boat yet, it is not lost on me that Jesus showed more grace and might by walking with Peter through the storm than He would have by stopping the storm. When Jesus and Peter were back on the boat, the wind stopped. The other disciples began to worship Jesus. His divinity was recognized and it humbled everyone who saw. Through Peter’s weakness, God was glorified.

By walking with Peter, and now walking with me, Jesus shows that our journey of faith is not a solitary journey. We are not left to our own devices. And even our moments of faithlessness are not irreparable. When Peter began to sink, Jesus didn’t say to him, “Well… good luck buddy. I tried but you clearly aren’t worthy.” He simply reminded Peter what the problem was (lack of faith), and picked him up.

We are not immune to the consequences of our choices. I often heard my parents say, “You are free to choose but you are not free from the consequences of your choices.” Sometimes the storm is your consequence for unhealthy or sinful choices. Sometimes the storm is a faith builder. Sometimes you are an innocent bystander caught up in the storm. But no matter what the storm is–be it self-inflicted, inflicted by others, or ordained by God, you can weather the storm.

Even when God chooses not to stop it, He will always walk through the storm with you.

For those of you who pray, I have new scans and blood work next week to see if the drugs I am on are effective on me. Please be in prayer with me as I go–that this medicine is truly working.

Nothing whatever, whether great or small, can happen to a believer, without God’s ordering and permission. There is no such thing as “chance,” “luck” or “accident” in the Christian’s journey through this world. All is arranged and appointed by God. And all things are “working together” for the believer’s good.

JC Ryle

I have always had a stubborn streak a country mile wide. I do not like to be told what I can and what I can’t do. I know that surprises many of you reading this. Along with that stubborn streak, I have also always been incredibly independent. Again–I don’t like being told what I can and can’t do.

I currently have an iPhone that is ancient in the technology world because my mom told me (in not so many words) that I’d probably get a new phone as soon as I was eligible for an upgrade. I am 9 moths past upgrade eligibility and still using my trusty phone. And I sure showed her, didn’t? A perfectly good phone without a payment on it. Ha.

When I was much younger, I can very clearly remember my mom asking me to go to the store on the corner to pick up something she needed for dinner. I don’t even remember what it was now! When I got to the Ka-geh (corner store, or what they call a bodega in New York), I saw my favorite cookies–Sable Sugar Cookies. But they were expensive so we rarely got them. When it was time to check out and pay, the Sable cookies somehow ended up in my bag, and then in my tummy before I made home.

When my mom counted the change and saw she was exactly Sable Sugar Cookies short on the change due, she asked me about it. I replied, probably with sugar cookie crumbs covering me like fairy dust, that I gave her all the man at the store gave me back.

Technically not a lie.

Technically not the truth either.

My mom and I went toe to toe for a good ten minutes before I gave in and ‘fessed up.

Fast forward to when I was eight/nine years old and my mom was about to paddle my backside–again, I have NO clue what it was for… just that it was well deserved-. My sister Lee happened to be watching and as my mom swatted my backside a couple of times, I refused to cry and let my mom know that “she had won.”

Afterwards, Lee said to me, “Jenny, if you cry before she starts she won’t spank you!” I got my last spanking in the 7th grade so clearly it sunk in.

(*Note: I was never physically hurt by a spanking. It was always done in love and discipline. Never anger or abuse. Now having my pride bruised is a whole different story.)

One day last week, a friend messaged me and off the cuff said that I seemed to be handling this new mindset and life change so well. I had such a positive attitude and they were impressed.

When I heard that my first instinct was to overreact, scoff, and say, “How dare you belittle my trauma?! Do you realize what I have gone through for the past four months? Do you know how hard my life has been and how much I hate walking this path? That I pray often for God to change my journey? Obviously I am not handling it as positively as I appear to be.

Instead I said, “Aww… thank you.”

And felt like the biggest fraud.

Because what do you say when you feel like you have put up a facade that is so far from the truth? That you’re playing a role in your life’s play but instead of the brave heroine, you’re the distraction from the real story. The interesting–and sometimes sad–plot twists are in the wings to avoid having to own them. How do you come back with, “Well, I think you’re wrong. But OK… I have many good days, but there are quite a few bad days…” I can’t.

Why do I feel like I have to sugar coat how I feel and how I am really doing? Why do I have to have people think I am strong and handling this “so well” ALL the time? Why can’t I let people outside my family see when I am weak? Why can’t I ask for help when I need it? It’s like I am eight years old again…. biting my lip, going toe to toe, and sucking it up so that I can “win.” Whatever that means.

I’ve spoken before on how this journey, though one I have to walk on my own, is not taken alone. And I am so lucky to have family, and friends on my side. But it has been hard. I have tried to look, every day–and sometimes every minute of every day–for the silver lining to my situation. When I start to feel like wallowing in my self-pity, I tell myself that I am so lucky to have my family/friends/treatment/independence because so many don’t. I mentally scold myself for feeling weary, or sad. And I feel guilt for not remembering soon enough that it’s not about me.

Except it is. It is my life and it is about me sometimes.

I didn’t realize the potential toxicity of this mindset until recently. It’s one thing to be grateful, thankful, and know where the joy in my journey comes from even in the valleys. Joy does not equal happiness. But to deny myself the frustration, grief, and sorrow because “other people have it worse” can be dangerous. I can recognize that I am incredibly blessed to have the treatments available to me that I have, but still hate that I have this disease. The two aren’t mutually exclusive.

I don’t want to publish this post because this post shows who I really am–warts and all. I am not always a positive and happy. I don’t want people to see me when I am tired, when I am feeling off, or when I am angry. (I wanted to say frustrated but there I was, trying to make my emotions more palatable.) Pride in my independence is a hard thing to set aside sometimes.

But sometimes, life is just that–unpalatable. And as a believer, to pretend it is always rainbows and unicorns takes away from my story of grace and redemption. If I never let people in to see the raw pain, the struggle, or anger, then how can I speak of the unfathomable grace that pulls me through? To belittle the incredibly difficult circumstances we live through inadvertently belittles the grace of God that pulls me through.

One song I have on repeat right now is Thy Will Be Done, by Hillary Scott (from Lady Antebellum/Lady A). It speaks to me in so many different ways all at the same time. It says:

I know You’re good
But this don’t feel good right now
And I know You think
Of things I could never think about
It’s hard to count it all joy
Distracted by the noise
Just trying to make sense
Of all Your promises
Sometimes I gotta stop
Remember that You’re God
And I am not
So…

I am not planning to camp out in my anger, or wallow my circumstances. I have written on that before. But finding the balance is where I seem to be stuck. How do I remain authentic to my calling and my identity in Christ while allowing my story to truthfully speak to the depths the love of Christ has gone to bring me back to Him?

One of my favorite things to do is to travel. I’ve written about it before so I won’t bore you with a retelling. But when I am traveling, one thing I absolutely LOVE to do is to go to museums to see some of the masterpieces of the greatest artists God created… Monet, VanGogh, Whistler, Michelangelo, Seurat, and Chegall… (I could go on for hours…. but again, I won’t bore you!) Their talent is unfathomable.

One of my favorite artists is Vincent Van Gogh. When I was in London in 2013, I got to see several pieces of his work in the National Gallery in London. Dad and I had an afternoon and we went to The British Museum (to see the mummies of course!) and then to Trafalgar square to see the lions, the giant blue chicken, and visit the National museum. Dad and I would go from room to room, find a seat, and just soak in the art. Granted, part of that COULD have been jet lag catching up to us, but I choose to believe it is because we are true connoisseurs of great art.

As we walked into the room with a majority of Van Gogh’s work, I stopped in my tracks. One of Van Gogh’s most famous pieces–a painting from his series Sunflowers, was across the room with a small crowd around it, oooh-ing and ahhh-ing appropriately. I, on the other hand, was speechless. (Write that one down…) I had seen this series of paintings on the Internet, in books, and I probably had a print of one of them on my walls in college–if I am completely honest. But nothing could prepare me to see it in person.

One thing you don’t see on the Internet or on a print is the layers and layers of paint that Van Gogh spackled onto the canvas to create his masterpiece. In print, you can see the texture, you can see the brush strokes, but you can’t really see the centimeter layers of paint he used to shape the sunflowers. It is almost as if instead of throwing out his canvas when he made a mistake, the artist took more of the paint and turned the flaw into a part of the final product. Like he knew that the mistakes added to the value of the painting–today we would say it added character.

I could very easily look at my diagnosis of MS as a fault, a flaw, or a mistake. I could see it as something that could ruin my life. And when I first got my diagnosis, there were times when I felt that way. When I was scared and felt useless. But… Ephesians 2:10 says, “For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.” Something my sister told me years ago rings in my ears as I read this truth–God, our personal, loving father, doesn’t make mistakes.

Unlike the great artists of human history, God doesn’t ever need a Mulligan. He doesn’t have to step back and rethink His plan. God doesn’t need to creatively figure out a way to cover his mistakes…. because He doesn’t MAKE mistakes. This masterpiece of life that he has created through me is just that–a masterpiece. And even though I make stupid mistakes, He works my circumstances for good. Not necessarily (or always) for MY good. but for His good.

So why don’t I see God’s work in my life as a masterpiece? Why do I hyper-focus on my sins, my mistakes, and my flaws? I know there are a million answers to that question–I am too close to my life to see it for what it is, or maybe I need to learn more about grace, or maybe that is just part of how life as a human works… I am not sure…. but I do know that God isn’t finished with me yet.

And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ.

Philippians 1:6

I press on toward the goal for the prize of the upward call of God in Christ Jesus.

Philippians 3:14

You could say that travel has always been in my blood. Before I was 6 months old, I had gotten my first passport and traveled half-way around the world from South Alabama to South Korea. Korea was my first home. In fact, I clearly remember the day I realized that living in Korea instead of Alabama (or whatever US city or state you’re from!) was different. That ALL kids didn’t have grandparents half a world away, and that traveling the world wasn’t something that people did.

Being one who grew up overseas, I never thought about how fortunate we were to have life experiences that gave us access to the world beyond our hometown. Now there were definitely some downsides–not seeing our biological families as much we would have liked, not understanding why I felt Korean but didn’t look it, or not understanding why I looked American but didn’t feel it.

But there were some definite upsides–and travel was one of them. Thanks to my Dad, I can pack a suitcase like nobody’s business. I have some fantastic stories that include theft, sleeping in airports, police car rides, and emergency passports–all because I was never afraid to step on a plane and take a trip.

But I digress…

When I look back at my travel adventures, I see such a parallel to my life as a believer. My adventures (both in travels and in my life) have been beyond my imagination. My path has been rocky at times, but each trial has left me with a deeper appreciation of grace, of my own humanity, and God’s infinite wisdom and guidance. Just as every stamp in my passport has left me a better person, every struggle in my life has brought me closer to God.

I have learned so much in my life–through both travel and struggles. And right now I am having to put into practice all the lessons I have learned along my life’s journey all while learning new ones. It is daunting. It is scary. It is humbling. It is HARD. But…. “He is the end of our journey…”

As I have traveled this new journey of mine for 3 months (to the day!), I look back and can’t find a single step that wasn’t taken with God by my side–holding my hand, moving my legs (sometimes dragging me kicking and screaming), and clearing my path when I couldn’t see to take the next step. Every time I wanted to give up, to cry, and pitch a fit worthy of a 2 year old, God has given me rest, and He is my hope.

Yes, my soul, find rest in God;

    my hope comes from him.

Truly he is my rock and my salvation;

    he is my fortress, I will not be shaken.

Psalm 63:5-6

These verses have become much more real and powerful to me these past three months. It has become my prayer, and my mantra, my hope. When I feel weary and tired, I pray these verses as a reminder of the foundation of my faith. When I feel joy, I pray these verses as praise and worship. When I am scared and anxious, I pray these verses to sooth my soul. God’s word is unfathomable–His truth is what you need, when you need it, no matter how much your needs change.

As I look ahead to my future–to my goal, I can almost see God standing there with His arms open, like a father waiting as his child takes her first steps across the floor. Right now I feel like I am toddling towards Him, arms open, eyes fixed on Him because if I look down, I will lose all courage, and all hope. The price is a high one to pay if I look away.

The other day I had lunch with my best friend Kristin. We don’t get to see each other too much–between her work schedule, quarantine, my MS, and her family we struggle to find friend time. But a golden opportunity presented itself and we took it.

As we left, I needed help doing a simple task I have never needed help doing–stepping off the curb with my hands full. Anyone who knows me knows I am NOT very graceful so on my best day it is hit or miss, but add MS to the mix and y’all better watch out. Kristin held my left over bounty while I clumsily stepped off the curb, and settled into my car.

As I finally got into my car, my leftovers in the spare seat, and my drink in the cup holder I jokingly said to Kristin that I needed a shirt that says “I’m not drunk, I have MS!” so people would know when I move a little more slowly, lose my balance, or use a handicapped stall in the restroom that I have a good reason. We laughed about it and parted ways.

As I drove home, I started to think on (read that stew on) that conversation–and I began to get angry. Why do I have to explain to people what’s wrong with me? Why do I have to have an excuse for something I can’t control and that I certainly didn’t ask for? Why do I care so much what people think about me?

On the outside I look perfectly healthy. I don’t look like I should use a handicapped stall in the restroom or an automatic cart in the grocery store. And I don’t need to most of the time–at least any more. I don’t have visible issues with my legs or eyes that would make walking walking difficult. All of my issues are (LITERALLY) in my mind. And on my spinal cord if we are being exact.

See these lesions are in my brain and on my spinal cord–invisible to anyone without an MRI machine and some contrast dye. You can’t see what makes me sick–and that I am thankfully recovering from (though I will never be fully healed). The treatments can, for lack of a better phrase, can put me into remission, but on this side of heaven there is no cure. Yet.

As I mourn this invisible illness, I am reminded of 2 Corinthians 4:16-18. Paul says to the church at Corinth, “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. ¹⁷ For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, ¹⁸as we look not to the things that are seen but to the things that are unseen. … For what is seen is temporary, but what is unseen is eternal.”

The face that I show to the world is not what is important. My stumbling body is temporary. Don’t lose heart.

Who I am on the outside–in the physical world–is not who God sees. God sees my heart–and where I fail Him, he sees my genuine desire for forgiveness, to do better, and be more like Him. He sees the unblemished blood of Christ where He should see me. And He loves me still. Don’t lose heart.

It is the eternal that is what we should be focused on. I have asked myself a million times. “Why me, God? What about this journey requires me? How can I serve and love others through this?” And every time I know in my core that it’s for His Kingdom–for the things I cannot see… So don’t lose heart.

As I face this disease, I have to remind myself constantly that this journey is not about what can be seen–it is all temporary. Even my MS is temporary. This journey is all about understanding God better, trusting Him more, serving Him more faithfully, and renewing my inner self every day.

My future and hope are in the unseen.

So don’t lose heart.