This Good Life

It’s four in the morning and I’m turning in my bed-
I wish I had a dream or a nightmare in my head,
So I drop my imagination and get some sleeping done
Now it’s five in the morning and I’m wishing it was one.
-M. Ward, Four Hours in Washington

Be gracious to me, O Lord, for I am languishing; 
heal me, O Lord, for my bones are troubled. 
-David, king of ancient Israel, Psalm 6:2



I miss my pre-fibro body. I miss my pre-fibro brain. I miss my pre-fibro activity level. I guess I’ll always be mourning that, huh? Who wouldn’t miss feeling less pain, less aches, less fatigue? It’s hard to hang on to perspective. That things are still good and full of hope, in spite of my physical circumstances, which flavor every part of life. How to lean past this pain? How to embrace my body as it is? How to live well day by day? There are so many rough things I can focus on, so many hard things to which my attention is naturally drawn. 

So. 

The pain is bad. 

The pain is real. 

All of my feelings are real and true. 

But. 

There are good things still. And good things have come into light because of my health. 

My love and I enjoying a beachly stroll in between naps. 

My marriage has not suffered-in fact; the love we have has grown: strong and rooted and deep. It’s very beautiful. Ben’s care for me is practical and emotional and kind and generous and gentle. There are many times where I cry and cry and cry and he just holds me and strokes my hair and tells me it’s ok to cry, ok to feel, ok to be hurting, and it’s not my fault, that he loves me more than ever. This is very beautiful and true. 

The friendships I have are also beautiful. The ones who have come alongside me and Ben, the ones who come over and plop on the couch with me. They go out to dinner with us when I can manage it. They text me and email me and ask how I’m doing, and they really want to know. They believe me. That is huge. 

Being a Christian is different now. It’s also growing deep roots. I keep having to test it against my new circumstances. And it’s ringing true. Christianity is ringing hard, yes, but so true. I am finding that all the Psalms about asking God to rescue, to sweep down out of the sky and banish all the enemies—I can relate so much more. I am finding that crying aloud to this God who sees all my desperate hours-asking questions, voicing doubts, always comes full circle to thankfulness and peace. It is becoming more and more true to me that physicality and health and circumstances can be ripped away in a flash, but that the love of God is true. That the love of His people is true. That He allows others to be His hands and feet to me. 

God cares about my health, yes—He cares about this body He created. He doesn’t want me to be sick or in pain. This is not part of His plan. But I am also learning the hard lessons of His timing vs. my timing; how His very mysterious ways are not my ways—how there are times when He doesn’t appear until the dawn. How His silence is real sometimes, and I’m just not going to get it, how I’m just not going to get this Christianity thing. But it still makes the most sense to me in this crazy, messed up world. I’m learning that He can really use the broken, the wounded, the used-up, the sick. That His strength in our weakness is actually enough, and actually full of grace. Even when we think we’re alone and that prayer is just talking to the ceiling, He really is there, too. This relationship is different than any other—to worship and follow an invisible God is full of peril and doubt and trust and faith. 

The Good Life is looking much different than the one I imagined or expected. It really is hanging on tight to joy, and looking for the brightness in the dark. Once I begin to accept my smallness brought on by ill health and reduced pride, I can see how big and beautiful and large this life is. How good this life is. 

Relinquish

If I could I'd fold myself away like a card table

A concertina or a Murphy bed, I would

But I wasn't made that way 

-Oh my God, Whatever, Ryan Adams

And behold, a leper came to him and knelt before him saying, “Lord, if you will, you can make me clean.” And Jesus stretched out his hand and touched him, saying, “I will; be clean.” And immediately his leprosy was cleansed. 

Matthew 8:2-3

There is an intense isolation in chronic pain.

I don’t know about you, but it’s important to me to be understood—not just in matters of my various physical conditions. I long to make sense to people, probably because I rarely make sense to myself! If others can make sense of me, then perhaps I’m not such a jumble of a person. If you understand me, maybe I can understand myself more. When I don’t feel heard, I feel out of sorts, out of touch. I’m guessing that we all have these kinds of feelings and reactions when others don’t “get” us. 

So when we add an invisible chronic pain condition to the mix, it gets complicated. You can’t see any evidence of how I feel. You can’t see the fibromyalgia “cape of pain” across my upper back and shoulders, you can’t see how all my muscles and joints fees inflamed. Even my skin feels on fire sometimes. You can’t see the lack of sleep due to being so damn uncomfortable, how I lay awake into the wee hours due to body-wide aches, despite taking pain medication or rubbing essential oils into my skin or turning off electronics an hour before bed time, or any of the other myriad of fixes for insomnia I’ve tried. You can’t see the monthly cramps that pierce my pelvis like a knife, bending me in half and making me sick to my stomach. 

How do I reconcile my predilection for being understood without much fuss with having unseen physical conditions? Now, the fear of not being believed is one I struggle with on a daily basis, let alone merely being understood. I’m beginning to realize I’m asking a lot when I ask others to understand me these days! I’m asking you to believe something you can’t see, after all. I’m asking you, in some sense, to step into my shoes, imagine yourself in my place on my couch, in the line at the pharmacy, filling out paperwork at the doctor’s office. 

It’s very easy to start feel like I’m invisible. Like it’s not just my fibromyalgia that is unseen. Like if you can’t see my pain, you can’t see me. It’s easy to assume I’m merely the extent of my pain, of what I’m feeling. It’s a battle to counter these feelings, let me tell you. Especially when I can’t always rely on the mirror of others to help me figure things out. If others don’t believe me, maybe I’m making this stuff up. Maybe it’s all my head. Maybe my pain isn’t as serious as I think it is. Maybe I don’t need to rest as much as I think. But then I calm down and think about the last 4 years or so, and remember. I remember the aches and the struggles and the efforts to figure it out. I remember the suffered relationships, the cutting back of activities, the many lessons of learning to communicate well.

These things are slowly teaching me, though, to relinquish my desires to be understood. Because that’s actually not the most important thing. It’s not even attainable! Even if I didn’t have fibro, you still couldn’t understand me completely. You still would have to take my word on how I feel. I still would have to figure out how to own my feelings and responses and choices without the approval or the opinion of others. So it will always be difficult. And even though I feel alone and invisible sometimes on my worst days, I know the people around do see me. My awe-inspiring husband believes me and takes care of me and takes on so many responsibilities out of love and joy and a desire to help me. He believes me more than I believe myself often. The friendships and relationships I have became so much closer, more honed because things have changed.

And not only by my husband and family and friends and co-workers. The One who saw and touched the ill and those on the outskirts sees me, too. He dignified the existence of the invisible and untouchable ones by physically touching them. He recognized the powerless and their situations, and saw them. Wherever we are at in our lives, we can be bold because Jesus sees us. He has compassion on us, He is waiting to heal us. Let us not fold ourselves away in our pain and our circumstances, but be free to kneel before Jesus and say, “If you will.”