The past two weeks have been a time of “silence” for me. I have dropped off the grid more than usual. After my xolair shot on July 13th, my body attacked me pretty hard.
I haven’t figured out what’s doing the attacking, which is crazy-making, but I have sustained a low-to-mid-grade fever for the past two and a half weeks. Life gets pretty brutal when you feel like you lose your right to whine about being sick because you would be whining 24-7 if you let your self constantly communicate how you are physically feeling. You also know that you feel awful when you can’t even get out of bed for doctors’ appointments.
No one seems to know why these fevers come and go, and I certainly don’t want to add anymore diagnoses to my already overwhelming overkill of a diagnosis list. My wrist gets tired from writing my list of prescriptions and diagnoses on “new patient” paperwork. Asking for anymore issues would just be plain greedy! My instincts, however, scream that something autoimmune is going on inside my body, and my body’s unfavorable response to echinacea echoes that sentiment.
So yes, life has been an agonizing battle over the past month thanks to my unsupportive body. Also, because my dysfunctional body affects my cognition, my writing is less than stellar at the moment. I am not sure if bad writing is better than no writing, but in the blogosphere, I’m going with the assumption that it is.
I’m a stay-at-home-30-something mom of two littles, a pastor’s wife, and a blogger. But I’m not normal. I can’t drive. I spend much of my time in bed. I can only handle being outside briefly, and every new environment threatens to send me into anaphylaxis. I cannot even pretend to be super-mom, super-wife, or totally-involved pastor’s wife. No one really expects anything of me. While my husband was the funny character for VBS two weeks ago, and my two littles were being shuttled back and forth between VBS activities, I was trapped at home alone for five and a half hours each evening. Any and every other staff member and spouse at my church was hands-on involved in VBS, and I was stuck at home for our fourth summer of VBS, nursing a fever of mysterious origin yet unable to sleep. I’m an introvert (my husband argues with me on that issue), but even my introvert self was desperate for connection. Our neighbor drove me to the church on the final night of VBS so that I could watch the closing program (during which I almost fainted), and so that we could bring the kiddos home in order for my husband to attend the “after-party” with the other VBS volunteers. As I sat there, watching the joy written on the faces of the children and helpers, I couldn’t shake the overwhelming sense of loss that I felt not being able to be involved in our church’s largest outreach event of the year. Later that night, right before midnight, as Jordan fell into bed, my heart ached with the desire for energy to pour into something so life-giving and joyful.
My life puts a whole new spin on the verse, “The spirit is willing, but the flesh is weak” (Matthew 26:41). In other words, I’m a person who wants to do all the things trapped inside of a body that refuses to do anything. This friction of body versus mind can be overwhelmingly frustrating.
When I was pregnant, I collected Pinterest ideas for homeschooling, play-dates, fun craft ideas, creative menu items, and homemade everything. I planned on being the absolutely most involved, invested mommy in the world. Today, those Pinterest boards tease me with their idealistic unattainable status. I sat through MOPS gatherings this past year trying not to cry as other mom’s talked about fun activities, play-dates, home businesses, and plans for their little ones. I couldn’t relate. Everything that at one time seemed so simple (driving to the grocery store to pick up some milk) feels entirely unattainable to me at this point in my life.
I am not sure if some people with severe chronic illness make peace with the fact that they can no longer participate in life the way that they once did, or if everyone struggles as mightily as I do with the desperate desire to engage in normal daily activities. Life goes on as normal for those around me, but for me, I have become more of an observer of life.
I am thankful for the moments when I get to dip my toes into the life that I long for. This morning, knowing that it was fifteen degrees cooler than usual, with a heightened awareness that I couldn’t deal with being cooped up anymore, I asked my mother-in-law to take me and the kids to the park. She said, “You better not faint on me.” I agreed whole-heartedly, and we embarked.
As I permanently parked myself bare-foot on the edge of the sand enclosure, I took in the whole scene. I reveled in the cool breeze that made it so that I could enjoy the outdoors this morning. I watched my almost-four-year-old and my five-year-old build a sand-birthday cake with stick candles and pretend flames. I observed them make friends with other preschoolers, I watched them struggle to share, and I breathed in a breath of gratitude when I heard my daughter say, “sure, you can play with that!”. I longed to freeze the moments this morning because they are so unbelievably valuable. There was nowhere I wanted to be more than sitting on the edge of the concrete digging my toes into the sand and pebbles where my littles were playing. I drank deeply of the richness of this simple morning at the park.
Maybe life isn’t so much about quantity as it is about quality. Maybe I don’t need tons of outings, marathon VBS weeks, and 3 mornings a week at swim lessons. Maybe a few moments of real life, fully lived in the moment is more than enough to keep me going. Maybe God helps those of us who are ill shove lots of life into those rich moments when we are able to engage fully to make up for the all of the moments that we miss out. Maybe kairos (God) time seeps a bit more heavily into my chronos (earth) time, because I am learning the value of a moment. Whatever the case, I sense that the scales of eternity are weighted slightly different than I might have suspected, and in exchange for (or in direct relation to) our heavy suffering, we, the suffering, get a bit heavier of a dose of glory.
Maybe those things that strip us naked, leaving us vulnerable and exposed before our Creator can lead us to a place where we can taste heaven a little bit more profoundly. Maybe, in this up-side-down-world, downward mobility moves us closer to our Lord.
Whatever the case, my illness feels a bit lighter today, and glory feels heavier. I will take it.
The Beautiful Broken 
Yes, none of us need multiple outings, marathon VBS weeks or 3x/ week swim lessons to live the important moments nor to learn God’s lessons in life. Those are man-made activities. What’s sad is that we allow ourselves to be judged by whether we participate in those very activities. It’s hard to set that all aside and ask God to show you the depth of what he wants you to understand. I believe that understanding only resides in quietness of heart and mind, otherwise the veil is drawn and we can’t see past it. I also find that it usually resides in what the world calls “small things” i.e. things of little worldly consequence. We usually don’t know the godly importance of happenings in our lives, therefore, we need to be at peace living our lives rejoicing in the small things because one thing is for sure – we have a mighty God. Sounds to me like you found the value in the small – you have been blessed.
Jan, yes. This is the blessing of being forced to slow down. I am afraid that I was one who was blinded by the busyness of life until I was pretty much stripped down to nothing. And then I found total abundance. Thanks for the reminder!
Megan, my heart goes out to you. As someone with a rare disease and a host of autoimmune diseases (also a Pastor’s wife) I can relate to so much of what you have written.
Thank you for sharing so openly the internal struggles we live with as we battle chronic illness. I have accepted my circumstances but acceptance doesn’t mean we don’t feel the losses. Lots of love Sam xx (blogger @ My Medical Musings)
I’m so sorry you have to go through this, I very much hope things will turn for you, for the better 🙂
I have POTS, and about 14 years ago I got fever time and time again. All I did was sleep, it was horrible. I couldn’t do anything. We didn’t know I had POTS at the time, and the doctors found nothing wrong with me. But after a few months, it was just gone. I still don’t know what it was. They believe it was my POTS reacting to something, and my body just sort of fought it/me.
Much love to you!
Megan, I too suffer with a body that does not keep up with what my spirit it wanting to do. I went through the worst of it when my kids were little and I appreciate your openness and honesty! I pray that God will continue to shower you with quality moments that give you peace and hope.
Thanks, Susan!