It’s only Wednesday, but it’s already been a WEEK. This quote has been on my mind lately. My husband and I celebrated nineteen years of marriage yesterday. Considering everything we’ve been through, that is quite a feat. Reminding myself to always choose love, to the end of everything.
I have been struggling so much lately to find any identifiable rhythm that brings some order to my days. It’s not the first time I’ve been through a season like this, but it is the first time that it is ME and my energy level that are standing in the way of finding some order. That really complicates things.
It’s been almost a year since I was diagnosed, but it took a solid six months before a sort of useful treatment regiment could be found with medications and diet, so it’s only been a few months under my belt with this disease and sort of ‘normal’ life. As so many of my friends with Chronic Illness tell me, it’s best not to get too comfortable with any sense of normalcy or ‘yay, the treatment is working!’ because invariably things will shift right back to square one at the most inopportune times. I do know, watching my friends’ experiences, that there is a point in time, a few years into it all, that you get more comfortable with what your disease requires and it doesn’t take up ALL of your brain space…but I’m not there yet.
I don’t think I’ve even quite gotten a solid grasp on how many spoons I actually have to even know how many I can spend on a given day. (Here’s an explanation of Spoons if you’ve never heard of it.) When I will have no spoons tends to happen at random, though some things are becoming clearer: a sudden weather shift, a loud sound incursion. But other days, there’s really no explanation as to why I feel so awful- and the way it can shift in minutes- it honestly causes no small amount of anxiety. I have become very wary of being out and about without my husband or my older teens with me. Nine times out of ten I am just fine, but that tenth is such a doozy. It’s terrifying to experience especially when strangers or acquaintances (or even unexperienced family members) have to help me, mostly because I am too in the thick of my disease to be able to explain my needs or how I need assistance.
So, my first order of business these last few months is just to listen to my body. My goodness, I think any woman (and especially a mother!) struggles with actually listening to our body. There are just so many demands upon it, and we tend to keep pushing through, even though we shouldn’t, because- if we don’t, who will? Right? But I am trying. Really learning to listen to that slightly tired, blah feeling and stopping right there. Because if I keep going, blow past that- I pay for it so dearly.
I am finding that my bedtime routine is probably the most necessary for me at the moment. I am getting almost militant about no blue screens past eight for myself. There’s a whole little litany of things I do as I shut down…Prayer. Lotion. Serenity EO in the diffuser. On my temples, behind my ears. Heat packs on my head and neck. Sound canceling head phones playing either the monk’s complines, or chant, or exceedingly quiet slow music for the length of time that the packs stay warm. Without it, my mind continues to whirl and my hearing just buzzes, making it impossible to sleep. My body has definitely made it known that I need that hard, quiet stop as a marker.
Cleaning and caring for my home has been quite a challenge. For a month or so, we had someone come in and clean the main areas of our home. It wasn’t something we could afford over an extended period of time, but for the time we did, it was very helpful and allowed me to rest and reboot and consider what I could actually accomplish when the period was over. The deep deep clean they did on their first visit helped too. We have divided a large amount of the work among the children now, which none of them particularly like, and none of whom actually do a particularly good job at it- work in progress, folks– but with the redistribution and occasional help from friends, we seem to have found a fairly decent system again. I am re-learning the best way for me to accomplish getting the mountains of laundry done, and it slowly, slowly, feels like it’s returning to a workable normal.
Just don’t glance at our faded paint, broken windows, abused garage doors, or our yard or garden, m’kay? It’s a bit, erm. Wild. My beloved wildflowers are more weeds than flowers, vines growing through the bushes, pokeweed in the rhododendron, and more poison ivy than you can shake a stick at. It’ll happen in its own sweet time, but man. It’s discouraging. The kids are pretty hard on anything and everything we use and the exterior is really, really starting to show it. Flowers are one of those things that just fills me with unmitigated delight. I love growing them, I love picking them, I love arranging them. Losing a lot of that to this stupid disease is kinda painful. I hope as I grasp how many spoons I have, returning to the garden might get a spoon.
Feeding a family of eight with such a weird unpredictability to my energy levels has got to be one of my biggest challenges, bar none. A friend sat down and helped me reboot my meal planning and grocery procuring systems -which I used to be quite ace at but somehow in this year of everything, my brain decided was non-essential information and just sort of dumped into the ether, buried in brain fog. It’s still a bit hit or miss. This week, for example, has gone relatively well. Groceries procured on time, meals made and ready at a reasonable hour. Last week, it was catch as catch can, all over the place, and we had to default to old standbys that no one even likes anymore because we’ve had them so.many.times. Neither my husband nor I really like to cook. We don’t really like food, either. It’s just not a thing either of us are gifted at and it makes it so hard. It gets even harder when you have one with specific diet needs- Celiacs. And three with limited palates. And then me, who often feels more nauseated than not any more. Making something that fits all those demands when you feel like crap…it’s hard. It’s definitely the area that I am most working on right now.
Which leaves the sort of home projects, things needing done. I used to schedule these into my normal cleaning routine, but that just doesn’t work anymore. I do keep a running list of things I feel like I can accomplish, and when a rare synchronicity happens, I’ll pull a job that matches my energy level and needs off the list and get it done. It’s definitely a much, much, slower process, but there is still some movement. The harder part is the stuff I can’t really do on my own anymore, which seems to be multiplying at an exponential rate. It’s a puzzle to be sure on a tight budget, but hopefully I’ll figure something out. Perhaps some local teens looking for side jobs…there’s got to be some options.
Having written all this out, I’m actually feeling a bit heartened. It has been very chaotic and difficult, and will probably remain so, but I can also see how we’ve already begun to adapt. It will come with time.
A fiction stack this week, with comfort reads thrown in for good measure…things have felt too heavy to really engage with non-fiction, so I gave myself permission to take a break.
I *did not* like Arms of Deliverance (Tricia Goyer). I own some of her other books, so when I saw this in the used book bin for pennies I figured, ‘why not?’. I kept reading waiting for it to improve, but it never did. Poorly plotted, rushed, and disjointed, verging on devolving to stereotype. It felt like it could have really sung if the characters had had time to breathe.
I had lent Fair is the Rose (Liz Curtis Higgs)- second in a series- to a friend a long time ago and it never came back home, so I was delighted to find it in a used bin. Which then led to reading the third in the series, Whence Came a Prince. I loved this series when it came out nearly two decades ago now and I still love it (and now own all of them again). Higgs takes the story of Jacob, Leah, and Rachel from Scripture and deftly weaves a Scottish tale echoing their story. If you like the Outlander series but get annoyed with all the constant spicy scenes, you’ll really enjoy these books. (And dare I say, better written than the Outlander series, which is starting to feel positively Dickensian in length and plot twists.)
Picked up Whereabouts (Jhumpa Lahiri) and Our Woman in Moscow (Beatriz Williams) at the library yesterday. Whereabouts was first written in Italian and now translated. Her books always fascinate me, so I am excited to dive in. Our Woman in Moscow is more spy and intrigue. I haven’t read that in awhile (though I secretly savored Tom Clancy novels there for a space), but I started reading the first chapter standing in the stacks and was immediately hooked.
I feel that I have bad writing habits carried over from school years; the most egregious, of course, is trying to force my writing to a close, wrap it up in a bow by the end of the show sort of closing. End on a high note! End on a call to action! Close with a hook! I can hear my old professors whispering in my ears. I had this argument with them then, and I have it with myself now–life just doesn’t tie up neatly in a thousand words or less. It doesn’t wrap up in hundreds of thousands of words, else why would we have libraries and libraries of books full of people wrestling with the human existence?
Such is the argument in my head as I consider what I wrote last week.
Perhaps my second egregious habit is to constantly and consistently self-censor, and not speak the whole truth, for fear of offending someone or being disliked or be called out- whatever the reason might be that day. I am heavily resisting the urge to delete what I wrote. It feels a bit too much like a ‘essay for a grade’ writing, but I will let it stand.
A reader’s comment jogged my memory as to what I really wanted to say, and so here, I will attempt to reconstruct my inner dialogue instead and leave the editing for another day.
How do you keep your sense of self when everything that defines you keeps rapidly changing?
How do you hold on to the dreams you have when you’ve almost forgotten how to dream?
I’m not really sure.
I have watched many aspects of myself die- aspects that I never would have dreamed I’d be forced to let go of, that I thought would have to be pried out of my cold dead hands. And oh, how I’ve grieved.
Sometimes I just feel completely hollowed out.
I have an extremely odd sense of time dilation now, and it makes me not trust my memory of situations (a common side affect of trauma, I’ve come to learn). I mean, yeah, we all joke that the 90s were only ten years ago, but my memory of time is really distorted. Things that I swear happened a year ago happened four, five, six years ago. I will look up from a situation I’ve been dealing with thinking days have gone by, only to discover it has been weeks or months. (I apologize publicly here for so many emails that have sat unanswered- I’ll get to it tomorrow-only to realize that when tomorrow came, a month or two later, the whole need for a reply has long gone past. )
You can imagine the affect on my relationships. So many friendships have fallen away over the years, and I don’t particularly blame the friend; I blame the fact that my attention has been so diverted by what we’ve been going through. It is the rare, patient person that can continue to keep checking in on me when I go utterly quiet and understand the reason I’ve disappeared has nothing to do with them and everything to do with the weight of our life.
So when it comes to dreams and goals…gosh. I don’t fit in your standard paradigm at all. I’ve found a lot of standard advice about goal setting to be utterly useless. And that is only worsened since I’ve been diagnosed. I will complete XYZ by X date just does.not.work. at all for me. What I have come to realize though, is that the process is the goal, at least for me. It’s the routines. Prior to all this, I tended to be both very free-spirited and whimsical, but also very perfectionistic. I’d probably not start on something if I couldn’t do it the way I wanted to, right then, from start to finish. So so many things languished under this paradigm, and projects and goals never, ever got accomplished.
When all the medical stuff cascaded in, there was just a period of desperately trying to keep head above water. There’s nothing left for anything else. But now, farther down the road from all that, I’m realizing my dreams and goals happen in God’s own timing so long as I just show up. And when I gaze back over the last two to three years, I am honestly amazed at some of the things I’ve managed to accomplish, at least as pertains to creating art, because not one of them happened because I said “I’m going to make THIS.” with intention. They happened in tiny bits and pieces over days and weeks, one mark at a time, a journey of- ‘well what happens if I do this next?’
This has taught me to trust the rhythm and routine, which my formerly free-spirited self still balks at, to be honest. I want to just dance in and out with the muse and not be tied down. But every single thing I’ve produced lately hasn’t been like that at all- it’s this- I’ve got ten minutes, I’m going to do this one thing and if it works, great. Walk away. It doesn’t. Oh well. Walk away. Interestingly, some of the stuff I walked away from swearing it wasn’t working, I’ll come back to in the next pocket of time and go now wait a minute, what if… and something wholly new and wonderful emerges.
I guess what I’m saying- because I think this is a pretty widely held feeling right now as the pandemic shifts and we return to ‘normal’, but nothing feels even the slightest bit normal and it’s leaving us feeling disconnected and discombobulated, maybe even dis-integrated- ONE, that’s a normal feeling after such an experience (at least from where I’m standing, after what I’ve gone through)- and TWO- trust the process of who you are to pull all those pieces back to you. They are going to be very different, and you might not even remotely resemble the person you were before, but that’s okay. Trust the process. Trust the discipline of routine. Keep making the bed. Keep drinking that favorite drink. Keep lighting a candle every time you get to work. Keep your prayer rule. Whatever it may be, lay your goals down on the rails of that routine, and I can attest that you will be mighty surprised just how far down the track they might carry you, even when you swore you weren’t accomplishing anything. This becomes that much more true if you are ill for any length of time. Energy becomes such a precious commodity and it is so hard to spend energy if you can’t see a return. How I know this feeling! But trust that whatever you can spend will pay off. But it won’t pay at all if you never start it or you wait for the world to stop changing around you or the storm to pass- if you do that, you’ll be waiting a very, very long time, and you’ll be even farther from that dream.
How about you? Are you a big goal-setter and list- maker? Free spirit? What have you learned in your own life? I’d love to hear.
These are two recent shares from the sketchbook on Insta. The gnomes are from almost a year ago, June 2020, and the house hidden in the trees is from June 2021. It’s very appropriate to put these two side by side in my mind. When I drew the gnome friends, I had very recently been diagnosed. A medicine they were trying me on made my hands shake so badly that I could barely hold the pen correctly, and my hand-eye coordination was frustratingly awful. (I can’t tell you how many things got broken in the early months- my ability to grip, to tell where my hand was, where the object was, and connect the two resulted in a very rough case of butter fingers. Thankfully most of my favorite coffee cups survived! The French press didn’t, though, alas, alack.) If you look closely, you can see that all of the straight and curved lines almost vibrate in tight squiggles. Getting these little guys out on the paper was an incredible fight, and there was a point that I just wanted to throw in the towel and stop, utterly despairing that they’d ever make their way from my head to crawl out on the page. But they made it. Ever since, when I pass these two as I flip through the sketch book, I just feel an incredible sense of accomplishment and hope. They are there, and I am here, and together we somehow figured out the new skills I needed to keep making art.
The house in the trees is a full year later. In somewhat similar fashion, it had been almost six months from my last foray in making art (the folktale pieces I shared here earlier). That week, I had been told that I was having an allergic reaction to one of my medications, and because it wasn’t clear which medication it was (as I had been on all of them for nearly ten months)- I’d have to come off every single one to see which one was causing the reaction. Now, my friends, the medications are what have slowly, slowly been returning me to a more functional state, and as I mentioned above, every addition to the medication regimen were hard fought adjustments. I am just getting to the point that I can conduct my days somewhat normally thanks to these meds. And now I will lose every single one until we figure it out. I remember sitting down to the page- angry, frustrated, feeling betrayed by my body yet again- and quite worried what would happen to me as all the medications made their way out of my system. Would I just crater? Or would I be able to function somewhat? I remember being quite angry that of course I would be hitting the time of year that I’d finally be able to paint and draw more, and of course everything would be flipping upside down again, and fiddlesticks! I just wanted to make art!
As if that wasn’t enough, I think every artist struggles with imposter syndrome and blank-page-itis, and it’s really bad when you’ve been away from the desk for awhile. Do I even know how to do this anymore? was ricocheting around my head. I remembered the gnome friends though, and the lesson they taught me. Just make a mark on the page. Any mark. The rest will come. And it did. Trees appeared, and grass, and then a little yellow cottage informed me it needed to be tucked in between. And there it was.
Now, are either of these my best work? Not particularly. Are they valuable work? Yes! Absolutely priceless. Hard earned lessons, both.
I don’t really like the pat cliché answers anymore, especially when it comes to disability or making art, and I really abhor the whole just try harder, pray harder and you’ll heal attitude, the fake it till you make it, pull yourself up by the bootstraps way of thinking. I really do. I can’t tell you how much hearing any of those attitudes just makes me want to spit nails. Don’t mistake what I’m saying next for this toxic way of looking at life.
Sometimes, sometimes, sometimes…
You just have to start. And start again, and start again. One mark and then two. One step, and then another. One drag of the paintbrush, and then another.
Even when the world is turning upside down, whether that’s your own inner private world or the world at large, spinning on its axis or tilting off of it, its okay to take a deep breath and trust the process. Just one step. And when you’re ready, one step more. Even if it literally feels like swimming through mud. You’ll be amazed at where you end up, and they might just smile up from the page at you and remind you to hope when you need it most.