Disabled and Whole

Happy Fall, friends!

My last post on this blog was last October. So much has happened in a year, but the purpose of this blog remains the same: to be like a “campfire”, or a gathering place to which people can come, slow down, read, have space to breathe and feel that beautiful, yet gross tension that it is to be both dust and Imago Dei (made in the Image of God). Almost a year later, I am finally here at my desk, attempting to put the soul-rendering work of God in our lives into words. To be totally honest, it has been an entire year of not knowing what to say, in words, to describe the refinement that my God has been allowing in my personal life. Writing is something I have grown to love over the years, which shouldn’t have surprise me so much because I’ve been an avid journal-keeper for most of my life. For a year, I have been praying and writing in my head, but not on paper or screen, so please bear with me. I am a bit rusty. And it’s time to start again. This may be a bit all over the place (thanks, brain!) but here it goes: 

True confession, in January of last year, it became apparent to me through time, research, and prayer that “social media scrolling” was doing nothing to help my mental or emotional health, only harm. So, I ditched it. I wasn’t a huge “scroller” before this, but a check of the news feeds was a part of my daily routine. And no, this was not some sort of “spiritual fast” or anything. Rather, looking back, it was a desperate attempt to simply keep going. To wean my brain off of something that society has tried to tell us that we all need to “connect”, which is not the way we were made or built to connect in the first place. 

My body and brain are slower these days, due to MS, but I’ve got a hell of a lot of fight in me. When the depression that I’ve been walking through with the Lord for years worsened last year, ditching social media and scrolling was more of a survival technique than a pious act of some kind. 

As some of you know, our family sends out missionary updates that we share on my Facebook and Instagram pages, and that’s been my gracious husband posting them for us, in order for me to rest my brain from screen activity. I have a lot of thoughts on social media, and not all bad. I work for an organization called Ethnos360 and our hope is to see a thriving church who loves and glorifies Jesus in every people group around the globe. We want all people to have the opportunity to hear the full story, start to finish, of the Bible and how Jesus sees us as worth dying for. It’s a pretty big deal. And my friends in the social media and graphic design department at our headquarters in Sanford, Florida, are absolutely incredible. They help to educate about our mission, and mobilize others to share Christ with the world. Super important work. In fact, it’s not lost on me, the irony that I will post the link to this blog on social media (my first time back on in a long time and I don’t even want to sign on!), but it’s true. Therefore, I am not writing this to bash social media. And now, almost an entire year later, I feel my brain healing and slowly relaxing into a less overwhelmed version of me. My physical body feels less anxiety. I am more focused. I am able to grieve things or feel things about life in my own time, and not when it is triggered by some post or ad. I am more present and can notice God in the day so much more. I can see Him walking intimately with my family in both joy and grief. I find that he now brings people to my mind to pray for them more naturally than when I would scroll social media. I had no idea back then how life-saving it would be to step back, quiet all the “noise”, be intentional and present, and finally realize my true human, original capacity/limitations. (I dare you to try it. If you quiet all the digital noise for a good long time, it allows your brain to detox off of the dopamine that comes with scrolling social media. You might even dread getting back on it at all, like I am. I can tell you that you will probably care less about what other people are doing in their lanes, and start looking up and not missing out on your own life in your own lane.) 

So, for the past year, I chose to stay in my lane. As the human mind and heart are prone to wander, I continue to experience the spiritual stretch that is the repetitive return of my heart to worship again and again.  It truly has been a matter of “doing the next thing.” Keep going. As Alan Noble puts it in his very relatable book called, “On Getting Out Of Bed: The Burden and Gift of Living”, he says, “This is precisely why we must see that each choice to do the next thing is an act of worship, and therefore fundamentally good. Feeding your pets is an act of worship. Brushing your teeth is. Doing the dishes. Getting dressed. Going to work. Insofar as each of these actions assumes that this life in this fallen world is good and worth living despite suffering, they are acts of faith in God. Choose to do the next thing before and unto God, take a step toward the block. That is all you must ever do and all you can do. It is your spiritual act of worship.” 

Ok, wow. Who knew that the subtle choices we make to keep going, as unto the Lord, despite pain and suffering, whether that be emotional, physical, mental, spiritual could be acts of faith in God. The more time one spends quieting the world of endless noise, the less we are sucked into the centrifuge that is this “breaking news story every minute”, 24/7 reachability, kind of world. Yes, I literally saw a commercial (for a news station I will not name), that said they strive to follow breaking news every minute! How can we live our lives if we spend our lives following the happenings of tons of other peoples lives, and then spend time thinking on other’s lives more than on Christ, and therefore missing out on your entire life. It’s absurd. And I have been there. And I have finally put my foot down that I will not be lulled into that world. And I certainly do not want to model that kind of life to my son. I want Roman to see reality the way Christ does. I want to show him what it is like to live in the freedom that comes with setting healthy boundaries in our own hearts and minds, and with others, in order that we may live within our God-given capacity. The only way that I have been able to adapt and live with this unexpected curveball called Multiple Sclerosis is by learning how to adapt and create healthy boundaries in my life. This has allowed me to be so much more present in family and ministry, and to have a better quality of life personally, which is huge for someone who lives in chronic pain. 

So basically, I am saying that I want the life of Jesus Christ, the Scriptures and the Holy Spirit of God to guide every minute of my day. Actually, let me rephrase. I NEED Him to guide my day. Nerve pain (that bastard) is my constant and darkest enemy, and an ever-present “demon” that God helps me to bear. It is difficult to talk about and honestly, very hard to deal with. If it is not nerve pain for you, I am sure it is something else. Like Alan Noble writes, in the midst of “the burden and gift of living”, there is a choice to “do the next thing”. When we choose to do the next thing despite pain and suffering, something really eternal happens. When each moment of your life must be lived in dependence on Jesus for the next breath or step, it then also feels like you are living in a glorious defiance of the darkness that tries to overtake you on the daily, even though it has no chance of victory. I am currently finishing up “The Lord of the Rings” trilogy for the first time, (so there will be references here on the blog many times, I’m sure). When getting out of bed each day, brushing your teeth, making meals and so on doesn’t feel as epic as a journey across Middle Earth to cast the One Ring into Mount Doom, dispelling darkness forever, life can sometimes feel like dull, numb, mindless repetition. Over time, this repetition of days with the presence of bodily pain wears down the human body, mind and soul. Some days, to the very end of itself. 

Noble goes on to say, “Don’t do the next thing just so that you can keep doing the next thing. Do the next thing because it honors God and testifies of His goodness and the goodness of your life to your neighbor.” I love that he hones in on God’s goodness. As my sister talks about in her latest sermon at Hartford City Church (https://www.youtube.com/watch?v=G61P4XsBfNM) , it’s not “goodness” as in “toxic positivity”, but rather a deep-abiding goodness that stands in juxtaposition to evil, and inhabits the very person, light and life of God. In “The Return of the King”, it’s Samwise Gamgee, Frodo’s gardener, who holds onto hope when all else appears lost. He says:

“I know. It’s all wrong. By rights we shouldn’t even be here. But we are. It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. They kept going. Because they were holding on to something. That there’s some good in this world, Mr. Frodo, and it’s worth fighting for.” 

I don’t know about you, but some days, it’s just all too much. Anyone else been there? And I just don’t want to “do the next thing”. Stuck. Frozen. Pain shooting down the limbs. Tremors. Fears. Alone. 

And then, I look up, and cannot deny God’s goodness in the laugh lines and sorrow creases on all the faces of the humans around me. In the extra bit of toddler chunk that smooshes a little when I kiss my child’s cheek. In the mind-blowing vastness and variety that is creation (especially Autumn!). In the sorrow and treasured remembrance of a loved one who has passed away. In the sweetness of a meal shared with friends on paper plates. In the way He orders the smallest details of our lives, so that we may endure, worshipping and glorifying him with the time we abide on this earth. 

Disability never defines a person, and yet it is an aspect of living every moment of every day of your life. The obstacles that present themselves daily when living with a disability or invisible illness are great. I would like to share a quick story of one of those “small details” God ordered in my life recently, so that I could keep going. I’m not really talking about those “God-moments” that you hear so frequently in Christian conversation. I am talking about those times when you know that in the midst of all the utter chaos and order in the universe, the Creator who made it all sees you and loves you. As I mentioned before, we are missionaries who help train and equip the local church to reach the unreached people groups around the world. We love this work. And I was about one week in to Evan’s 17 day trip to Brazil this past summer to help the missionaries serving at the base there. (If you want to hear more about that, our latest newsletter, here it is (https://mailchi.mp/838ad797ddf0/summer-recap-and-update-w-a-cool-story-of-gods-faithfulness). Evan got to witness so much of the soul-shaping presence of God moving in the country of Brazil!) 

And I got to enjoy sweet fellowship and time with my toddler, Roman, before he started preschool for the first time. I had the honor of walking with him through the start of preschool, while navigating Daddy being in Brazil. It was such a precious time with my child, those 17 days. My sis got to come out for a week and it was such sweet sister/auntie time. And whether you have one kiddo or many, anyone who has solo-parented one or more potty-training toddlers knows the exhaustion level you can reach, and can likely relate. And there are so many of you who are moms, dads, grandparents, siblings etc. who also have a disability, chronic illness, or have someone in your life who is disabled or battling a chronic illness. These past few years, Evan and I have grown so much in our teamwork. We don’t do things perfectly, by no means, but we sure do love being a team together. It’s around day seven of my teammate being in Brazil, and my soul was getting a bit weary. My toddler is the sweetest ball of big feelings, and there were definitely some big feelings about Daddy being away. I don’t think anything could have prepared me for toddler tantrums. With the added nerve pain, my skin is usually on fire most of the day, so I am constantly learning how to be a mom and disciple my son, in the midst of my own physical pain. Perhaps many of you know what I mean. Let me be clear, t is in no way Roman’s fault that I am in pain. It is just a reality of our lives currently. So the Lord has been growing me in patience, mercy, and honestly, my endurance level, during this toddler season. It can be a process helping my sweet boy in these times where it seems all rationality is gone in my toddler’s eyes. 

Endurance please, Lord. Ease the pain, please, Lord. And patience, I pray. Amen. This is what I find myself doing most of the time throughout the day.. Short prayers of need to the One who always supplies. It’s a lifeline. 

One mornings, we went at the local coffeeshop a few blocks over. And I was unintentionally wearing my weariness as large, greenish bags under my eyes and a slightly unkempt hair updo. We sat down with our coffee, and in walks a group of people in orange athletic wear. I immediately recognized them as the “MS Run The US” team. Instant tears came to my eyes. You guys, hope walked in the door. I instantly felt a little lighter. This video will explain their mission. To provide hope. Please give it a watch. It’s less than 3 min:  https://youtu.be/PcR6rpGNhcc?si=UyQHCIudCS6SfoRf  

The Ultra Relay is an epic, 19 person, staged relay run stretching 3,260 miles across America for the MS cause. MS Run the US is dedicated to raising awareness and funds for those living with multiple sclerosis (MS) — to provide hope, to aid those living with disability from the disease and to support research to stop it. 2.6 MILLION RAISED TO STOP MS! msrunthus.org. 

Running over a marathon a day, one person at a time, sacrificing their time, money, even their physical bodies, to show people like me that we are seen. I walked up to one of the members and said, “Hi, my name is Chelsey, and I just wanted to say thank you for dedicating so much time and energy and effort to remind people like me that we are worth fighting for. To remind myself that I am worth fighting for. I needed that more than you know today.” I told her how I believed God had provided this meeting, and how deeply seen I felt knowing that I am not alone, that others see the pain and struggle that are present in a person’s life who battles MS daily.

Shortly after this happened, I was listening to music and and came upon a mash up of two of my fav Broadway songs. Even out of context, I think the lyrics are meant to encourage and speak into the deep parts of our soul. I find that great art can do that. I highly recommend you listen here: https://youtu.be/2aQykuIaJVI?si=tCqlH_69qRfAzOL8 

My friends, do not give up. You are not alone. Keep going. There’s always hope, even if it feels small and quiet right now, or maybe you don’t feel it at all sometimes. It’s there, and it’ll find you. The One will come running to take you home. All will be new. It’s only a matter of time.