• Art,  daybook

    Cultivating margin…

    I wrote on Instagram the other day:

    I find myself strongly questioning the path I’m on at the moment. Our summer was one of healing, rest, and restoration in many ways, especially for those of us in the family who have chronic illnesses. Less than three weeks into what one might call a ‘normal’ fall/school schedule (such as it can be in the strange times we find ourselves in)—and I am completely and utterly depleted. My fellow Spoonies in the house are also showing the strain. Needless to say, we’re calling a time out and recalibrating. I’m not even sure what ‘normal’ can or will look like for us anymore, but running on fumes ain’t it. Now what?

    It’s been roughly a week since I wrote that, and I feel no closer to an answer. I feel like ‘butter scraped over too much bread’, and well, where does one get more butter and less bread? How do I serve the needs of my children, physically, emotionally, spiritually- serve my husband and myself similarly- when there just isn’t enough of us to go around? While for the first time in our family’s history we are not struggling financially- Glory be to God- everything else feels short. My husband and I both fell ill with you-know-what in March. While my case was milder, my husband suffered severely and required oxygen support for nearly three weeks. He has since suffered many long haul symptoms, and it feels like we just can’t quite get his ‘gas tank’ back to full. He will get a bit of rest, a bit of healing, and then something comes flying at us and it drains him to fumes again. We keep walking back and walking back from commitments, saying no far more than he would like, and still, there’s just not enough margin for him. I feel like a decision is before us that is going to greatly disappoint some people, cause some hurt and discomfort, but it’s a decision that has to be made, and soon.

    I could say similarly for myself in the gas-tank department. While I’ve gotten better and better at managing my symptoms and diet, there are still days, physically, where my illness just says, yea, nope. And it drains me so badly, those days- and it seems to take longer and longer each time to recover from them. And then regular life throws a curve ball, and what little gas I might have in the tank takes a nose dive.

    Both of my medically fragile kids seem to be transitioning too- one has improved a lot meaning less interventions, and the other (who has been pretty healthy for awhile) has suddenly downshifted and we’re having to recalibrate and recalculate there. The mental load of that is pretty exhausting, which I don’t think I was willing to acknowledge to myself back in the day but I do readily acknowledge now.

    I keep praying for wisdom and margin.

    A few reads that have encouraged me lately in this department:

    Finding Ground by Jordan Durbin

    Lord of the Sabbath by Leslie Bustard

  • daybook

    The rails of routine…

    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.

  • daybook,  link love

    Bits and bobs…

    I am trying to remember to come over to the blog and post the recent ruminations from Instagram, as I know many are leaving the service. (I myself left Facebook, yet again, last week.) I don’t think I really have a grasp on how I want to use social media anymore. I know parts of it just leave me feeling absolutely awful. I have been trying to be more intentional in whatever I post, returning to the things that really brought me joy waaaay back when in blogging dinosaur time, which means books, beautiful things, thoughtful words, and art.

    The above quote, which I illustrated last week, really hit home that week. I had been wrestling with a ton of miscommunication and unkindness directed my way, and I needed to unpack it and let it go. It has ever struck me, when it comes to forgiveness, that is a life long journey. Christ was quite serious when He said “seventy times seven”- there have been incidences and people in my life that I very much thought I had healed from and had forgiven, and then something twinges, pain in the wound, and I find myself having to work through the process again, and again, and again.

    As to the recent reads, I’ll just copy my Instagram post here. I do very much feel a deep post coming on about disability. I think I’ve been dancing around it for a long time, and I think I’m going to work on it privately and then bring what’s fruitful here to the blog.

    From Insta:

    A small library stack this week. I just finished Sitting Pretty by Rebekah Taussig (@sitting_pretty ) yesterday and tucked my thoughts into Stories. I saved it as a Highlight under Disability. I feel a blog post marinating in my brain lately. There’s stuff that I’ve been wrestling with ever since my first child got diagnosed with a life-long disease, (and then, and then!) and it’s only recently that I’ve begun to understand why it was so difficult to begin with and why there has been so much wrestling. When I read writers who are disabled or are exploring disability, there’s been a lot of “you too?!” moments that have granted a lot of clarity. Anyways, far too much for a little IG caption to explore.

    I haven’t started the Austen Years by Rachel Cohen, but I think it’s going to be good. Part of the fly leaf blurb reads “Through Austen’s works, she reckoned with difficult questions about mourning, memorializing, living in a household, attending to the world, reading, writing, and imagining.” Definitely something I can relate to at the moment.

    We tend to use the summer to test run new recipes for the family to tuck into the routines for the school year, and so far we haven’t hit a bad one from Instant Family Meals. There’s one for Italian Wedding Soup that is blissfully easy and oh so good.

    Around the web:

    I have really been enjoying Rebecca Green’s monthly newsletters, and her last two are just chock full of good stuff for creatives and artists. Check them out here and here. I’ve also been greatly enjoying Aimee Kollmansberger’s substack, Homely. Just quiet little notes each day about what’s on her heart: home keeping, homeschooling, rhythms, routines, what she’s learning. They are just little balm bouquets every day and they’ve been really encouraging and inspiring to me.

  • daybook

    Well, hello October…

    My goodness. It is October 15.  The school year took off without me! It has been such a helter skelter month and a half that I feel as if I am just now coming up for air and just barely at that. All that margin I thought we had built in to our days was apparently the teasing placidness of summer break talking.

    Needless to say some things need adjusting.  So let’s check in, shall we?

    Things we did well in September:

    Um. We held on for dear life. HA!

    I think, the success I see in September is that those rhythms we’ve really built in to our family culture held somehow over this last month. We ended September relatively right-side-up even though no one had really had any time to think about or put towards those rhythms. They just held. We are consistently praying together and reading aloud together as a family just about every night, which has been a huge goal for a long time, and I wondered if it would hold during this new season. It has. Our kitchen/dinner/meal planning routine held, relatively speaking, and that in itself was a wonder to me, as I didn’t feel like I had any brain space to devote to it.

    Laughably, the second two of my goals for September, keep pounding away at the medical bills and more art, more art, more art barely blipped the radar. I had no idea what was coming around the bend when I wrote that.

    As seems to be a constant in our lives, lately, we had a series of breaks. James’ car, which has been quite literally limping for nearly a year, had another catastrophic failure. We had to devote all of our financial margin to get it back to some useable form. It seems to be a constant measuring for us with so many of our large appliances/tools as to whether to finally scrap it and go without or attempt limping some more. We couldn’t find any more of a workable solution for the financial margin available than the reality we already had, so it limps along and lives to fight another day. We keep having things break for no other reason than perhaps to frustrate us: our lawn mower, most of our large appliances (save the oven and dishwasher, which were finally replaced around Christmas time last year), sometimes even just the simplest things…it feels a bit perverse!

    It has been a lesson in taking deep breaths and just living with the reality. It’s hard in this culture of ours, but it’s necessary.

    I’m thinking here of our lawn (and recalcitrant lawnmower(s), yes-plural- we have three, only one of which *sort of* works) which has been at all levels of shorn and meadow-like and half-hacked throughout the summer. Our side and front gardens have completely gone to weeds multiple times this summer, only to be weeded back to presentable-ness, only to get completely out of hand again. We live in your typical suburban has a home-owner’s association and perfectly manicured, cared for by professionals green lawns neighborhood. A lot of the owners are middle-aged or retired. They have expectations, is what I’m saying. And we can’t do a thing about it. We do what we can, when we can.

    Just this last weekend, James was able to somehow-rig the sort-of-working lawnmower enough to start again, and we set to work with a vengeance, all of us older ones, each taking turns. The back yard was nearly a foot long, the front, about half that. I started in on the back yard late in the afternoon, got about four rows in, and then…OUCH. ouch. OUCH. ouch. Glance down, and then, as calmly as possible and as quickly as possible, get out of the back yard. I had run over a yellow jacket nest that had somehow established itself in the three weeks we couldn’t get the lawn mower to work. They were so angry. I got nailed, twice, and I think it was only by God’s grace that it wasn’t much, much worse. My body was working faster than my brain for once, and I was moving before I even realized I needed to move, if that makes sense. Needless to say, a decent sized patch of the back yard remains un-mowed until we figure out how to wisely deal with the yellow jackets. I was so angry when it happened- though that might have been the adrenaline talking- but I was just so frustrated that we just couldn’t, for just once, get the yard mowed all the way. And I couldn’t even walk the rest of the day. OH, how I stewed! But maybe it was the Bendadryl haze, or the prayers, or the sleep, but the next morning, I couldn’t stop laughing and rolling my eyes at how ridiculous and perverse this stuff has been, and a bit of an awed laugh of grateful thanks that the Lord preserved my life! It could have been a thousand times worse! It could have been James, and I would never have been able to get to him in time.

    James can’t go near it- he is life-threateningly allergic. It would be suicide for him to try…which leaves me. And I don’t know how to ‘fix it’. So we have to figure it out. And it’s yet another thing…another smudge and besmirch on our standing in the neighborhood. They don’t know our lives though. And I’ve learned to just shrug and get back to work. Do what you can, with what you have, where you are. I understand that it a pretty profound way now. The lawnmower is just the last in a long, long train of lessons.

    Sometimes you can’t fix or change things. Sometimes what is, just IS. 

    Which leads to the third goal, more art, of which there has been precious little. I had wanted to launch a new collection on September 15. It is now October 15. I have serious doubts that it will arrive on Nov 15, but that’s my new re-set goal. I did, somewhat for my own sanity, jump on the #inktober2018 challenge wagon over on IG, only to promptly fall of said wagon due to more pressing concerns. I have serious doubts there will be much of it in October. It just isn’t in the cards for me right now. For some reason, September to December are always my absolutely nuttiest months, and it’s time for me to recognize and embrace that and stop trying to shoe horn more stuff into it.

    Things I’d like to focus on in October:

    Erm, October’s half gone at this point.

    I think my main focus has to be on a bit of weeding. None of us in the family are happy with the current state of margin, so we’ve got to weed back until we feel like we’ve got the proper amount of breathing room. I hate that it takes me nearly a week to read/respond to emails, the sort of administrative side of being a homemaker and homeschooling mom type things. I can’t think straight, and that’s a bit problematic. When I don’t have enough time to brain dump and plan, that’s when I really start making mistakes. Costly mistakes. Easily avoidable mistakes. So yeah- MARGIN. That’s my goal for the last two weeks of October.

    Things I’ll leave behind:

    GLUTEN. *cough*laugh*cry*laugh*cough* Guess who was diagnosed with Celiacs in September? Yours truly. I was already pretty decently gluten free but would often ‘cheat’ (more like ‘not care’) when not around Elliana. Since the diagnosis, walking that last quarter mile to being zero gluten— UGH. It has taken so much brain space. And it’s hard. It was, perhaps, so much the easier for Elly four years ago because she really didn’t know what a good something-or-other tasted like. She’s always had the GF version. Me, though. My Scotch-German genes are rebelling LOUDLY. I haven’t been doing any grains (not even GF options) at all, or sugar. I’m okay as long as I can’t smell the real deal. My brain just can’t handle smelling yeasty, bready goodness without being all engines GO. NOW. Every time I’ve been near a bakery or something like that my body goes in over-drive, and all of the sudden my stomach is growling like I’ve never eaten in my life….each time….major head ache. It’s so weird. Even if I’ve literally just eaten. So now I can’t even enjoy the smell of it! Hopefully that will eventually fade. I am having a hard time dealing with the hangry that happens if I get too far out of a meal. I haven’t quite gotten my protein balance right. BUT. I will happily leave behind twenty pounds last month. It balances itself out then!

    How about you?

  • celebrations,  daybook

    Fresh beginnings…

    It’s our first day of (home)school today, September 4.

    It’s also my Namesday. My chrismated name (or Christian/Baptized name, as Westerners might be more familiar with) is Hermione, for St. Hermione of Caesarea. As most Orthodox will tell you, the Saint choses you…mine certainly did. While a catechumen waiting for my Chrismation, I could not decide which was the wisest to chose and so told my priest. The three saints’ names I had narrowed the list down to were written on strips of paper, left under the Gospel throughout Liturgy, and then pulled at random by lots by my Priest after the service. Anyone that knows me well knows how much I resemble (moreso in temperament and thirst for knowledge that physical appearance) Hermione of the Harry Potter books, so it was rather a sweet, yet funny thing that the original Hermione chose me. (Hermione in the books is named for none other than my St. Hermione; J.K. Rowling often referred to Foxes Book of Martyrs for names. It’s also where she got the name for the hospital- St. Mungoes. There’s a few more Easter eggs like that throughout the books.)

    It’s also the ecumenical new year, as the new church year started on September 1.  My parents came for a visit over the weekend.

    Just a new page all around, really.

    It has been a sweet, quiet day.

    I’m not sure what September holds for us yet. Looking back over August, I feel a sense of relief. It felt like the first month that we really and truly found our footing in many areas after months- years, really- of upheaval. Doesn’t feel like we’re running frantically from one plate to another and tossing them, just trying to keep it all in the air.

    I’ve been looking back over August as I look forward to September and establish my goals, and I thought I’d drop some of those thoughts here.

    Things that we did well in August:

    our food prep/kitchen/grocery budget flow. (This has been a huge goal for me for at least two years, so to see some progress feels SO good.)

    –  staying in the moment.  One of the unfortunate side affects of medical trauma-rama is focusing *in* the moment, because it feels like there’s always something barreling down at you and also that you barely stood up from the last thing that ran you over. It gets hard to just enjoy the moment and not think about it all. I feel like we really truly did this as a family in August, just enjoyed each other’s company and celebrated the every day things. That’s with my husband having a kidney stone that necessitated an ER visit about mid-month. I feel like we did the right things to recover and didn’t rush the process and trusted our intuition as to what was needed both for him and for our family. Trusting that voice is hard after what we’ve been through, and I’m really happy to report that we did. And James is definitely on the mend!

    – working hard to get all the past-due and collections medical bills PAID in full this month. It was so unbelievably squeaky tight in August because of it, but it is SUCH a relief to start September in the black. There was a huge paperwork snafu when the two medical systems here merged into one (we had bills at hospitals in both networks) and the new merged network sent a bunch of bills repeatedly to a decade-old address right after the merge. I found it odd that we had stuff showing on our EOBs from our insurance but no bills were coming. It took a solid month and a half and a billion phone calls to get it straightened out and then we got slammed with a number of collections as soon as they got the right address dating all the way back to the merge in January. No chance to negotiate. It was so frustrating and humiliating, especially when it was the new medical system’s fault in the merge, and they had correct phone numbers for us the whole time. (Sigh.) But it’s over with now! We still have larger bills set on payment plans that are okay and weren’t affected by the merge, but no more collections! Yay! That’s huge. The more important thing to me is that we didn’t just survive while doing it this month, we thrived on the challenge of it. It didn’t knock the wind out of us like it has often done before, keeping us up at night. We did our best each day and slept well.  I don’t think the kids really noticed a difference one way or the other, and that is really important to me! They don’t need to be worrying about it. It’s been a stressor for all of us for so long that having healthier responses is BIG.

    Things that I’d like to focus on for September:

    building up our pantry. I have planned to set in some ‘winter stores’ like a proper squirrel in September. We’re already halfway there on the fourth day of the month: my parents gifted us a membership to a bulk store with better prices on our bulk daily needs, we found an even cheaper place locally for 50 lbs of rice and oatmeal than I had originally researched (score!), and there was enough wiggle room in the grocery budget to take advantage of both. Some of the things we still need I am researching for best prices, and we’ll finish it up in the second half of the month. The fact that I can even say (and know!) that there is space in the grocery budget is HUGE! YAY! I want to work on baking and freezing some meals, too.

    – keep pounding away at the medical bills. Again, this is already showing fruit- James and I both have some side hustles going, and we’ll able to put some extra towards that goal this month. This is the first month we’ve felt comfortable taking on extra work, knowing that it won’t burn us out or unbalance our rhythm.

    – more art, more art, more art! I’ve been working on a collection all summer called Bird-In-Hand. It is a culmination of many quiet, healing moments of painting and drawing this summer, and God willing, I’ll introduce it the world on or around September 15. With the return of our school rhythm, I’ll have more time to devote to art, and I am very excited about that. I have so many things going that I am always sorry to put away and having more focused time will be wonderful!

    Things I’ll leave behind:

    – giving up. I tend to shut down when I feel overwhelmed instead of finding some practical steps forward away from whatever it is that has me so locked down. Sometimes it’s just a simple thing like getting dressed. Making good food for myself. Calling someone who might know the answer to the quandary or has similar life experience. All small things, but they aren’t standing still and not doing anything at all, and that’s where the forward movement comes from. Step by step.

    – crappy food. And crappy people. Both seem to be hitting me on the same level lately. I want to invest my time in life-giving things and not life-taking things. Stronger boundaries and fences! And better food, for crying out loud. My body deserves better. So does my soul!

    – escapism. I notice that I start to check in to social media and mindlessly scroll when I am feeling overwhelmed. I am checking in with myself when I pick up any technology as to whether what I’m about to do is life-giving or life-taking. The answer is usually pretty obvious to me when I ask that- I know when I’m using it as a tool towards something that gives me life (like art tutorials or dear friends’ thoughts or looking up a recipe I’ve forgotten, balancing the checkbook, writing blog posts etc.) or whether I’m just escaping from the noise of the kids or the school day or whatever. One is usually done with intention, and the other is done mindlessly without a goal in mind.

    How about you?