I think I have been using a page from North Korea's play book. I have poured all of my resources into showing the world my strength while everything and everyone inside my borders suffers and knows we are not what everyone else sees. We are much weaker than we show.
As I try to figure out how to balance what I want to do, what I can do and what I must do, I am reminded that I still have such a striking ability to be a faker. Especially with myself.
I fake it because I can't believe a teeny tiny tick could wreak this much havoc.
I fake it because when people look at me, they don’t believe I can possibly be so sick.
It is one of the weirdest things about chronic Lyme disease - it destroys everything inside but leaves you mostly looking the same on the outside. I look mostly normal. Except when I don’t and I’m obviously not posting my picture to Instagram that day. There have been days when I see my reflection in my bathroom mirror or in the worried face of my mother-in-law and realize my outsides match my insides that day.
Exhibit A
I am ashamed to say I used to look at pictures of other folks with Lyme and see their posed smiles and think there's no way they could actually be feeling as sick as they claimed and still take a picture like that. Karma!
I was in a lot of pain and trying to keep myself held together to attend Cara's little graduation. I went down hill for the rest of the day and ended up in bed. But none of that would be obvious from this picture.
I fake it because I’m hoping the “fake it till you make it” philosophy will actually pan out for once.
I fake it because I’ve felt I don’t have a choice.
We have bills to pay and kids who need to eat and get dropped off at school and have a normal life.
I fake it because I don’t want to be a whiner or a burden or have people’s pity.
I fake it because I don’t like depending on others.
I fake it because I want to pretend I haven’t lost things I really liked about myself.
I fake it because I don’t want to accept that many dreams for our family and life are shriveling up.
I fake it because my job requires that I put aside my own stuff to hold space for the stuff of others.
I fake it because I am really scared of having this mess up our kids or make them grow up too early.
I fake it because I actually do have good days and they trick me into thinking that maybe I can just make bad days good days if I try hard enough.
I fake it because it soothes my ego to pretend I am still strong.
I fake it because when I stop moving and doing, I start shaking and tremor-ing and twitching and it freaks me out.
I fake it because I am afraid if I slow down I might never be able to get up and go again. Ever. I am hugely afraid of this.
I am (clearly) struggling to come to terms with what must change and how I am no longer capable. It is obvious as I write that list I fake it because I am mostly afraid. I’ve learned quite a lot about fear but still it seems fear knows how to fit me like my favorite, familiar, worn out t-shirt.
Because of who I used to be and because I have made commitments to things and people with my old body, mind and spirit in mind, I have carried on with many responsibilities longer than I should. My family and my health are paying the price.
I used to be an overachiever. I can see that clearly now. I miss who I used to be because I really liked her even though I never considered her a superstar and was sometimes hurt by the jealousy of others who did. She and I did neat things. Giving myself creatively, delightfully and purposefully to my family, to my work, to my life are all things I have loved about myself and the way I have been able to live.
But in the last couple of years, especially the past five months, all of the mental, emotional and physical resources that I needed to live that life have dried up. For the most part, it dried up slow. That’s my excuse for why it has taken me so long to realize the well is completely dry. Nothing left. Nada. I’ve been running on empty for too long. The thing is, my heart has always been set toward the least of these, the vulnerable ones. It has taken the mounting pressures, stressors and my inability to function or work to get me to stop and realize the vulnerable ones who need my care and attention most right now… well, it’s me and it’s us.
You see the Instagram smiles, the birthday parties, dinner with friends, the (more sparse) blog posts. You see that I still teach sunday school and taught the modular class and have kept working. Not too much has changed it seems. This is one part faking, one part being faithful to our family and life, and one part a deep need to have some normalcy in our new unpredictable life.
You might think it is mostly business-as-usual around here because you see me when I line up my troops and do these things. But my poor little troops (i.e. strength, energy, ability) are getting fewer and fewer and there are too many holes on the front line to keep pretending I can handle life as we have ordered it up to now. I can’t just soldier on any more. And this is hard for me because I loved the way our life was.
You don’t see that now Jason often writes me daily notes of basic things I need to do that day because I’ll never remember. And then texts me to see if I remembered to check the note.
Or that I tell Cara on Sunday night to set out her ballet things for the morning but it’s not until 5pm the next day that I realize we missed it when Jason asks how ballet went.
Or that that I cannot recall words or ideas or birth dates or any number of things my short-term memory is supposed to hold and store for me. My brain short circuits a lot.
Or that sometimes I can`t hold a pen or read a book.
Or how my hand or foot gets painfully paralyzed like a claw for hours or that I can’t feel my legs many mornings.
Or that I have often spent hours each day in my bed, under a heating blanket wearing ear plugs and an eye mask. Yes, its as unpretty as it sounds. The earplugs are at least hot pink though.
Or that I cover my ears and whine when my kids ask for too many things at once- things like lunch, help, water or to go outside. You know...ridiculous requests. ;)
You don’t see that I sometimes drop Evan off at school and go back to bed.
Or that on really bad days, I go back to bed after lunch too.
Or that we have a lot more dirty dishes and pancake dinners.
Or that Jason comes home from a full day of work to a wife who hands the kids off to him and crawls back into bed (or is already in bed).
Or that I cut my hair because I can’t hold my arms above my head long enough to style it.
Or that it has taken me days of concentration to write this blog post.
Or that I can become increasingly jumpy, anxious and grumpy when sensory input rises (the level of noise, light, even touch). Lately, I`ve noticed the way I avoid eye contact in conversations. Because my nervous system is damaged, it is easily overwhelmed which means I will tremor and try impossibly for the rest of the day to get warm.
The tricky thing is that its not always this dire. Sometimes, I have a really great week where I plan the menu like I used to and we eat healthy, yummy, colorful meals and we laugh and giggle a lot and I take my kids to the zoo or go to work with a pep in my step. Or maybe I pinterest plan a new creative idea for the house and we go for a family walk after dinner. But right now, these days are harder to come by and the bad days come without warning.
I know I have to let go of who I have been. Stop clutching. Stop faking. Start accepting. Start resting and conserving. I must stop lining up my troops pretending they’re not all dying off one by one. My army used to march in impressive synchrony. Perhaps I was too proud of this. Now they have become a very bedraggled bunch. Perhaps I am too ashamed of this. Some have been picked off by Lyme and some picked off by my unwillingness to admit I have lost so much strength and ability in this ugly, unwelcome battle and I must retreat, regroup. I must protect and heal what’s left.
I think this might be the ultimate test of my deeply encountered belief that I am beloved. Will I still be enough when I am stripped of all of the things that make me feel worthy? When I am no longer able to make my life full and beautiful? Maybe I am scared of this most of all. This requires humility that I do not yet have. It feels like an end of life lesson that I don’t care to learn at thirty-three with little spirochetes sucking the life out of me. It shows me that my pride is like the mythological chimera. A four headed beast. Kill one and another, slightly different but still fueled by the same aggression, is right behind it.
I fake it because I’m afraid but.. also... deep down, from the bottom-up, from inside-out, I am hopeful. It’s a Hope I cannot put into words and I don’t feel it too much these days. But it is there. Steady and Faithful. I find it in people who love us and are trying to take care of us. I find it in our families who have made it clear that we will not be alone as we go through treatment (physically, emotionally, financially) and as we figure out ways to be well. It comes from sitting out near my little front garden, listening to the birds and soaking in the sun. It comes from watching sunsets and sipping hot tea. It comes from Some Place deeper than me, deeper than the fears (which are many). It’s a Hope that hopes for me. And I hear my Hope calling, Come to me my little faker with many fears, I will give you rest.
Rest. It is what the Shepherd’s need in this next season. Actually, I think we must retreat before we can rest. So we are in the process of retreating. We have started this in small ways but more is needed. There are many unknowns and a lot of risk as we move in the direction of rest. Do not hold any illusions that we are gracefully, serenely, seamlessly transitioning into a delightful frolick in the ocean. We are filthy, beat up, grimy soldiers on our hands and knees, crawling toward a stream of water because we simply Must.Have.Water. It’s more about survival than choice.
We are making risky decisions because faking it doesn’t seem to be working – imagine that! All of the reserves are dried up. We must listen to what our life is asking for now. When it comes to my health, I haven’t been paying attention to what it has to say. I need to listen to my body. Listen to the Lyme and what it has to teach me. Because I can keep fighting and keep faking but none of this has produced peace, goodness or love… and certainly not healthier people. It’s time to try something different.
We are in the process of retreating - in our commitments, in our daily lives, future plans and with my work. There is a lot of risk, especially financially for our family. Pray that we would listen and discern well how we should retreat for rest. I have been thinking of Matthew 6 (and 11) a lot. And Jesus’ words to his friends, Don’t you know that the God of the Universe cares for you and will see that you are provided for? Why do you have such little faith my little sheep? Do not worry about tomorrow, tomorrow will have enough worries of its own … Come to me if you are weary, I will give you rest. I especially like The Message version. Are you tired? Worn out? Come to me. Get away with me and you’ll recover your life. Walk with me and work with me…Learn the unforced rhythms of grace.
I feel myself melt into these questions. I don’t know why my faith is so small after all of the gifts of my life. I don’t know why I still doubt that we are loved and seen and cared for. I don’t know why I let tomorrow's worries takeover today. My faith is tiny. Help! And yes, I am so tired. I want to get away and recover my life and find rest. I want to learn the unforced rhythms of grace. Yes!
But first… RETREAT TROOPS, RETREAT!
