in which there is an announcement, and everything is terrible

My heart.

My heart.

So if you haven’t seen it yet, I made a pretty enormous announcement over on the shop blog. Some of you don’t even know there is a shop blog, so hey, it’s cool if you didn’t know.

Bodies suck, folks. 

Right. Right: I’m still kind of stuck on that last sentence: bodies suck. Bodies suck, bodies suck, bodies suck suck suck suck suck, goddamnit, I knew this would be hard, so hard, and even still: oh, to hell with this forever. As hard as I try, as much as I want to be kind and forgiving to this body, as much as I want it to be about this disease and not this body, I am so full of rage and loathing today. 

Today I admitted there was a thing I could not do because of my disease.

That’s not exactly true, because in actuality I admitted that a few weeks back, when we started Doing All Of The Things: this is a process, of course. Today I just started telling the world at large. It was actually harder to tell a few close friends, studio people, industry folks & family. 

I hate this. 

About a year ago- almost on the dot- I changed out my primary disease modifying medication from Copaxone to Gilenya in the hope that I might feel better overall and cut out my annual relapses. (I was also totally over shots, no lie.) I managed to avoid my annual relapse, but I didn’t get any better, which was disappointing. I had thought, last summer, that I had maybe another two years of dyeing in me, at most, so we began trying to adjust things in the business; moving to a more wholesale- based model and leaning more toward teaching. By early winter, though, it was becoming pretty clear that I wasn’t going to get that much time. 

I don’t know. I hunted down every option I could: I soft- fired my neuro, switched up a metric ton of meds, took on two different physical therapists, got in with the pain clinic (and god, I’ve been afraid of that forever), met with a bunch of new doctors, all trying to scare up some magical… something that would make my work possible. It seemed everyone I met with asked me the same set of questions, though. 

“Are you still working?”

Well, yeah.

“Full time?”

Of course.

“What do you do?”

And then I’d explain it to them, because almost no one does this work, and they’d look horrified, and we’d discuss Uhthoff’s Phenomenon, as though I didn’t know what that was, as though I hadn’t known what it was since I was diagnosed, which, incidentally, was right after I’d decided to open a business as a dyer. Because you know, life is funny that way. 

I was holding out, really, on meeting with my new neuro at the Hopkins MS Center. Surely they’d have my magical miracle. If there was pixie dust to be found, some sort of sciencey- wish- come- true potion, they’d have it, a combination of physical therapy, diet, drugs and mindset that could make this body just up and Do The Damn Thing, already. 

I spent about twenty minutes sobbing in my car after that appointment, obviously. It was over. 

———————————-

I grew up in a blue- collar family in New England. We saw the doctor once a year, unless one of us did something awful to ourselves, because doctors are expensive and there were four kids in our family. If we got a cold, or were otherwise unwell, my mother used a home remedy on us, or we were told to suck it up and move on. Rub some dirt in it, that sort of thing. This is pretty typical for folks who grew up in my socio- economic set: my husband grew up the same way, as did many of my friends at the time. I don’t subscribe to that theory these days, but I’ve also lucked into really, really good health insurance. That’s how it was, and given the circumstances? It made sense. 

I was the oldest, so I was also free labor a lot of the time. That’s also pretty normal for the oldest kid— Oldest Kids, chime in with me here: I’m not alone on this, right? I remember cutting back rosebushes, helping with the garden, painting fences, that sort of thing. You just help out, because you’re the biggest and you have the strongest back. 

Here’s the thing, though, about being broke and being free labor: sometimes, you felt like crap and you had to do things. Hard things. There wasn’t any option. Sometimes, your folks had just taken on this new place they were renting and it needed all this work before they could move in and you and your step- dad really needed to sand the floors and paint stuff and whatever and if you felt like hammered hell? Too bad, so sad. There wasn’t any money for a doctor and stuff just had to get done, so you just did it, and it got done. You had already learned not to even ask for a doctor. You just got up and did the thing. Broke folks all over the country are doing things like this- and a lot harder- every day.

When I was out in the world, I joined the service, and that’s a bit of a trip, too. If you’re in the military, there’s an assumption that if you’re in and you’re not on a pregnancy profile or 2 years away from retirement then you’re either perfectly capable to do any physical task assigned to you— you got into the service, after all!— or you must just not have enough drive to accomplish the task. Now, maybe it was a personal goal, like running a 5k; that’s a personal failing. No big, you’re just lazy. If it’s a professional goal, though, like meeting physical fitness standards, you’re a giant screw- up and it can impact your career; people would blow out knees over that sort of thing, sometimes because they came from backgrounds like mine. 

Between those two spaces, I picked up this idea that really, I could push this body to do just about anything I wanted it to if I only had enough desire, enough drive, enough want. I just needed determination and discipline; anything less was a personal failure. In actuality, it’s shocking what I have been able to bully this body into doing; equally shocking, of course, is the toll it has taken. I am falling apart, coming loose at the seams, and no one on my medical team is at all surprised, which is of course embarrassing as hell. I am not, it turns out, capable of bullying myself into submission forever. My body has turned on me, rebellious and angry; fair, as I’m angry at it for not playing the game I’d wanted, too. Are we at war now? I think it’ll win, which means no, not a war, or more accurately: perhaps we’ve been at war for years, I just didn’t consciously admit it, and now I’m waving the white flag. 

I’ve been bullishly pushing for so long, too long, and I need to stop. I don’t have much of a choice, which… hell. There is that. I don’t know what to do with that. I’ll just live with it, because it is unavoidable. 

———————————-

I don’t know what comes next. I have a plan, a small one, because I can’t seem to get my head too far around a life that doesn’t include this space, these people. I won’t be leaving the life (I think of it as The Life, for crying out loud): I’ll be doing some work for Cooperative Press, which is lovely, and bless them forever for taking me in. I’ll be writing patterns, too, of course. Just plain writing, I think: I see a lot of that. Narration, that’s in my future; I’ve done some commercials, a few small audiobooks, one so OMG terri-bad that I don’t even want to talk about it (except I kind of do, it’s hilarious and I’m really enjoying the superawful ones) and I’m in the middle of one now that’s pretty alright. That work is not only enjoyable but seems so funny to me after years of jokes from friends: “Sarah, do you know what you should do?”  Yeah, well- Jason, I’m doing it now. Meditation is probably an avenue for me, I think; I’m trained, and after over 20 years, I know a little about that, too. 

Rest, though, first. It’s a strange idea. I don’t know how to do that; I’ve never been any good at it. Even in the middle of relapses, Sam’s always needed to hide my laptop and devices from me; I am not good at not working. I want to create a Plan For How To Rest, that’s where I am with the idea of resting. I want a limitation on how long I rest, too; I’ve written my neuro, He Of The Diet Mountain Dew, to ask him how long of a recovery period he thinks I really, actually, seriously need. I am actually that idiotic, you guys. Here’s hoping I’ve learned a little, and can do better. 

Tonight, I’m going to curl up on my couch with my tiny dog, my giant dog, some tea, a giant piece of chocolate cake and my laptop and scroll through pictures of the last 2.5 years in the studio. Oh, we built a really amazing thing. I’m just not ready to stop being in this place, doing this thing with these people every damn day. I know it’s killing me and some days I just don’t care: I love it so damned much. I am going to miss this with every bit of my broken heart. 

on the woods, and finding peace

This is what the storm looks like so far. It's sort of promising, from my point of view.

This is what the storm looks like so far. It’s sort of promising, from my point of view.

We’re watching the weather lately to see if this hurricane/ tropical storm is going to affect us for the 4th, and I’m a little embarrassed to say that I’m the Scrooge who’s hoping it might put a small damper on the festivities. I’m not hoping that the fireworks will be cancelled altogether, but if it could just discourage the unofficial explosives that happen throughout the neighborhoods- the backyard pyrotechnics that freak out my elderly dog and give me a bit of the weirds, too-  I’d be okay with that. Better than okay: I’d be happy. I know that “blowing stuff up, sometimes under varying degrees of intoxication” will be the theme of the weekend no matter what actually comes out of the sky this Friday, but it’d be nice if the 4th itself was a bit more subdued, as that’s always the worst day.

It’ll be so good to have a long weekend, though. I love that the 4th fell on a Friday this year; we can hide out and get some much needed- rest. No trunk shows this weekend! Just cooking, knitting, organizing, nesting, and maybe some writing. Snuggling my big old Rottweiler, who gets so nervous about fireworks sneaked over the Pennsylvania border, and trying to convince her to go outside a little- that, too, which is always an adventure. Poor Lilu, she’s a good old girl. 

Every year around the 4th, we think about heading for the hills. We talk about taking off for Canada, maybe, or a cabin out in the woods, just hermit- ing away, campfires and books and no connectivity, my favorite sort of vacation. We never do it, which always surprises us, and I’m still not sure why; possibly because the 4th itself seems to surprise us each year. It doesn’t really register on my list of holidays, which might just be denial- if I don’t think about it it doesn’t exist?- or maybe, because we don’t celebrate it, it doesn’t really ping on our radar. Either way, disappearing for that week- or even just a few days- would be a spectacular piece of self- care that we really should prioritize. I think next year we’ll toss that cabin idea up to a few vet friends and see how it shakes out. Besides, I miss the woods.

I’ve been sneaking off to the woods- or approximations thereof- a fair bit lately. Baltimore has all these lovely green spaces tucked in the middle of the city, and stopping off to take a moment in Gwynns Falls Park or Druid Hill gives me a moment of peace. I love these places year- round, but in the summer there’s this blissful coolness to the canopy and a very specific, heated- earth smell that I’ve always loved. It makes these places feel secret, hidden, and special in a way that they somehow miss in the other months. My family still refers to me as a city mouse, and they’re right- I am that, and my mistrust of small towns still runs deep. I prefer a bevy of resources. I miss the quiet, though, and I miss spaces like these, full of trees and moss and fallen logs. My cities need to be of a certain size— large enough to have Parks Of Some Substance. I can’t do the large- scale hikes I’d like to take on- I still have aspirations regarding the Appalachian Trail- but I love having these quiet, sweet pockets of woods tucked into my city, waiting for us. I can duck into a park, pull out a book and some water, just hide away for an hour or two in order to find my center again. 

I keep thinking that if I’m clever enough to know that I require an hour or so of quiet in the trees throughout my week, I should be clever enough to take a few days out of my year, too, and run off to a cabin in the woods for the 4th, as well. Why don’t I just do the thing, then? Why do I just ignore it? Is it my trademark bullheadedness, my desire to just push through any emotional inconvenience and keep trucking forward? I don’t hide that the 4th bothers me; instead, I just ignore my own needs and move through this period of the year. It isn’t that big a deal. And it isn’t, but it’s unpleasant: less so, year by year, but why experience that unpleasantness at all when I could replace that with something calming, something potentially healing, something definitely better? Ach, but then I’d need to extend the effort, I suppose. 

Self- care isn’t always simple, you guys. Maybe next year I’ll be better at it. What was it I was saying a few entries ago, about hitting the age of adulthood and being, magically, an adult? I remember hitting specific age markers and thinking, This is it, now is when I will have gotten it… right? The more I talk to my older friends, the more I begin to realize that we never do really “get it”, though; we’re all still puzzling it out as we go. I used to find this so frustrating, but there’s a comfort in it now. We are all just sussing it out. We are all constantly getting better at this. We are all progressing. There is no end goal, no point at which we begin to stagnate, unless we allow it. There’s something really exciting about that thought, too. I’ll keep getting better at self- care. I’ll get better at everything, as long as I work at it. Oh, I like that set of thoughts very much. And maybe next year I’ll find that cabin, take that trip. Something more than a few stolen hours in the woods sounds very, very good. 

on crossing out of strange lands

 

I may write about her a wee bit on occasion, but showing her face is still a different matter.

I may write about her a wee bit on occasion, but showing her face is still a different matter.

Kiddo has been home for a little over six weeks now, and it’s begun to feel normal, which is wonderful and also strange. We’re a year into this college thing now, and it seems designed to keep everyone slightly off- kilter, which is not as unpleasant as that might sound. When she first left it was so disconcerting; there was a her- shaped hole in our lives, and we kept everything almost precisely the same for a time, just waiting to see how things felt before we made any changes. Later, we began to shift things around in our own lives— carefully moving our routines, seeing how things felt, trying on new habits and then throwing everything out and starting again from scratch. 

As soon as we started to feel somewhat settled with our new roles, she was home for Winter Break, which was gloriously long— about five weeks of family time. We nested and settled into our old familiar family patterns— wonderful, comforting, and absolutely bizarre, of course, as she’d just begun getting used to college, and we’d just begun getting used to life without her at home. She left again, and we got into the work of building a life with her at a small remove in a more serious way. We watched Hannibal  on Fridays and Walking Dead each Sunday together via frantic allcaps texts and meme wars. We found our own routines, over time, and it worked. 

The rearrangement when she comes home for the summer, that’s been odd; I hadn’t realized how quickly Sam and I became accustomed to this new way of living, and suddenly the house seems so much more full, so much brighter with her in it. We wake before she does, at 6 am (because we are old people who wake with the sun, as she likes to remind us) and the house seems quiet and a little too large, which is a funny thing to say about less than 1500 sq feet of house, but it’s true, too. It feels as though we are living two different lives; our quietly happy, just- the- two- of- us life, and a boisterous, joyfully laughing, all- three- of- us life, too. 

She is spending half- a- week house- sitting for a friend of ours, caring for cats and playing house with her boyfriend, which leaves us again playing Empty- Nesters. We quietly putter about, fail to remember how to cook for two, make up voices for our animals— oh, we’re those people, I’m not ashamed— and marvel again at the way our lives seem split in two. I like it, the unexpected switching- up of everything, the way I anticipate her arrivals, and of course we all know that in just a few years this will end, so there’s a preciousness to this, too; it’s like a weaning period, a titration. It’s good to have this period of adjustments, on both sides. 

The entire process of separation is a tricky one; we carefully look for the areas in which we’ve failed and try to correct now, and it’s bittersweet on all sides, because we all know what’s happening, of course. She’s working through some physical therapy for a hip/knee issue, nothing major but an uncomfortable inconvenience, and when I realized that she didn’t know exactly how to call in a doctor’s referral, I asked her to listen in while I made the call so that she could learn how to do this for herself in the future. It isn’t a big or difficult thing to do, but we’d never done this before— a total failing on our part. Managing insurance and getting the best care you can find, especially in a larger metropolis, that can be tricky. There are specific questions to be asked: is there public transport at this location, does this specialist actually specialize in my exact condition, what is the patient load like lately, how hard is it to secure follow- on appointments? Agh, I should have been all over this two years ago, damnit. 

In doing these things, we’re all conscious of this undercurrent of training: we are making sure you’re really ready, Kiddo. These are our Last Few Important Things. It isn’t a cut- off, by any means, but there are some Big Deal Lessons that we want to be sure we haven’t missed- the things that we felt stumped by when we were finally on our own, the things that the military either held our hands on or beat into our heads. It emphasizes the inevitable, though, and that’s painful, too. All three of us rebel a little over it at times. Separation isn’t as simple as it seems it should be, even when you know it isn’t forever. More of all that change business, I’m guessing— change being so good sometimes, keeping us flexible and pliant and mobile, and also afraid, and clinging, and worried about the future. 

I try not to write too much about Kiddo these days— it seems a little invasive, her being an adult now— but these relationship and how they evolve- and our family and how it has changed- these things are so key lately. This has been a source of endless fascination over the last year; it just keeps transforming- something relationships are always doing, of course, but lately with such breathtaking speed. She comes home from college with the smell of New England in her hair and full of so many new ideas and so much news and our lives are suddenly so full of her, her, and mostly only her. I mean, we’re doing other things, living our lives, working and knitting and dogs and friends and museums and concerts and books and all our normal middle- aged fun stuff, but mostly it’s just her. It’ll be interesting to see how these transitions work out over time. 

Change, as the theme of this year, is both frightening and fascinating; I’m much more into the idea of transformation over a gradual period, but life has its own way. This part— this piece of change, and how it’s happening to the three of us— I’m enjoying very much. I’d been so worried over it a year ago, having no frame of reference, and I still fret at times, because the unknown can be a worrisome place, but it seems surer now. We have language for what this looks like, which mistakes we make, how we correct; we have procedures and in-jokes and our-places. This isn’t Terra Incognita anymore. 

 

on faith and change

Doctor's desk with Mountain Dew can.

I took a quick picture of the office, including the soda can. No, there isn’t really a pump on the Mountain Dew; that’s just some hand sanitizer tucked behind the can, although how funny would that be?

My new neurologist drinks Diet Mountain Dew. I’ve latched on to this like a sneak peek into his humanity: I like my doctors to be people, and this seems like a throwback to med school study sessions, or possibly secret, epic tabletop gaming sessions— absolutely a possibility, as he’s also only slightly older than I am, and slightly odd, as all neurologists seem to be. Do they profile for that in medical school? Jocks over to Orthopedics, eccentrics off to Neurology, tweedy nebbishy sorts over to Internal Medicine: everyone in your queues, now. 

We’re still doing that careful dance that happens in the beginning of all doctor- patient relationships, the who- are- you, what- is- this waltz, but he seems to have the ratios of detached empathy and clever problem-solving that I prefer.

All of this chasing- down- better- health business has come with enormous amount of change, which has been challenging. Switching my primary doctor was one of the biggest switches of all, and I was a little unprepared for how much I’d feel about it. I’d been seeing my neurologist, Dr. D, since I’d presented at Hopkins in 2009 and we’d worked well together, but as things progressed it became increasingly clear that I needed to move on from general neurology to work with someone who specialized in MS. Breaking up with your neurologist isn’t fun, but I don’t there’s any better example of, “It isn’t you, it’s me, honest.” 

And so: a leap of faith. One of many lately: 2014, a year of faith and change. I’m still that girl, it seems. It isn’t a silly decision: I’m at the Hopkins MS Center, the new guy comes with all the proper paperwork and writes all these lovely papers, he has ideas, it’s all very exciting, etc, etc … you get it. I’m into it. It’s a great deal of change, though, and that’s the theme right now: change, upheaval, uncertainty. I’m relearning flexibility, both in PT and out of it. It’s good for me, but I’ve become more rigid than I should’ve been (how the body informs us of the mind and spirit, it is odd) and it’s tricky stuff. I’m enjoying the challenge, too, to an extent: there’s something to being pushed that I’ve always welcomed. 

I miss certainty, though. Reliability. The known. That was nice for a while, even when it was clearly no longer what I needed— even when it was clearly no longer doing me any good, even when it began to show signs of hindering me, of hurting my health. Breaking away from the things we know- from the things I’ve known- is hard, painful, and frightening on this core level that I remember very well but had lost in the comforting, comfortable haze of safety. It’s so easy just to settle in and allow even my own health to slide, just to let the status quo carry things along. 

Scarier, though, is just letting everything slide and decline. This set of new faces, and all their new opinions and ideas, it’s all both intimidating and invigorating. I’m trying not to let it overwhelm, and while there are days when I’m not sure I believe this is really my life, I know I can’t afford not to believe it, either. To faith, then, and change. 

on living with a hurricane

I cut my hair, folks.

 I went back to this wonderful place in the woods in CT that I used to hang out in, The Village Of The Little People, recently. There were rumors it was going to be destroyed so developers could build condos. I was so relieved. Also, I cut my hair.

I’ve been working on this thing lately, a push to regain my body. It’s exhausting. Regaining your health really takes it out of you, as it turns out. Funny, right? Maybe I just needed to hit a really low point first, though, in order to gain the momentum. It gets jumbled. Either way, here I am, scuttling from one appointment to the next; I feel as though life is what happens in between my specialists lately, and while that isn’t the worst thing that’s ever happened- because there is progress being made- it’s overwhelming, too. 

It’s all physical therapy and pain clinics and tests and new neurologists and the Hopkins MS Center and new diagnoses and neuro therapy and new medications and mostly just the word “and”. I asked for this and I’m getting it, firehose- style. Things got ugly this spring, as they usually do; it didn’t feel like a relapse, though, and it wasn’t. Yes, on so many levels! I’m glad I can read my body that well now. I asked for an MRI and it came back clean as a whistle; no changes since 2012. Beautiful, but that’s MS, too; sometimes you just don’t have any info to work with. But hooray for Gilenya working, and hey, three cheers for some body awareness, right? That’s tricky stuff within chronic illness.

Muscle spasms are now a big part of my disease: dystonia, specifically. My initial reaction upon receiving that diagnosis was that the word “dystonia” sounded like the name of achingly terrible high school thrash metal band. It would look perfect shakily pencil- carved into a desk in arched faux- Metallica lettering. I’m so into that image, even if I’m not into the thing itself. 

I thought, when I started all of this, that part of what I was doing was looking for answers: some sort of why to all of this. Even before I’d gotten my results back from my MRI, though—- as I was leaving radiology—- I knew I didn’t really care about any of that. I wanted, very badly, for the MRI to be clear of “black holes”, the T1 brain lesions, truly dead tissue, but other than any of that, the why of what was happening no longer mattered to me. What I cared about was what we could do to fix it. That was what had always mattered: getting back to life. I’m working on it. In actuality, I think I’ll be getting back to life, but life will likely end up looking different in the end, which is scary. I can only look at that in glimpses, in pieces. I need to break that up into parts and take it in doses, which is appropriate. 

I had the strangest thought the other night, curled up on the couch, listening to the thrum of my muscles as they cycled through my body. Squeeze, hold, hold, hold, partial release: as my body works through this I listen, I distract, I coax, I try so many approaches, learning how this new thing is done. We’re working together, my body and me, I suppose. Meds transitions are always a strange time: there’s usually a period in which I need to taper off one drug before I can begin another, and that can give a small glimpse into the true condition of my body, of what lies underneath. 

I have no idea what my body is really like anymore, I thought. Underneath all the medications, I could be in any condition at all. It’s very disconcerting, this realization that I am really that disconnected from the genuine state of things. Later that night, talking with Sam, I told him that while I’d never discontinue taking my medications for any period of time, there’s a part of me that wonders what it would be like to spend a week drug- free, just being in this skin. It’d be trickier than just not taking my pills for a few days- most of my medications build up in the system over weeks, and the Gilenya takes about three months- but the idea is a fascinating, terrifying mental exercise. I wouldn’t want to be in this body, unmedicated; that’s a truth, too. It would be horrible. My idea of normal is when my meds are working. That’s complicated.

Taking a break from my medications is never something I’d do, obviously—- there’s the losing ground by being off my disease- modifying med, and the pain, god, that’s a deterrent, too—- but there’s something so strange and surreal in re- entering this knowledge. I’m always aware of it on some small, secret level; denial is useful in small doses, and it can be a genuine coping strategy in daily life when carefully applied. I’m happy not to dive to deep into the mess of pretending my world is different than it actually is, but in order to move from day to day, I think I need to minimize just how frightening this separation from my body- or is it my disease?- is.

(I’m trying to parse that lately, too: what am I fighting, exactly? Am I angry at this disease, or at my body, or both? What I still haven’t been able to figure out is my current relationship with my body in all of this: are we team members working on taking this disease down a notch, or is our relationship something more adversarial? There doesn’t seem much point in directing anger at this body, despite the inevitable and perhaps ridiculous feelings of betrayal that come with long- term illness, injury & disease.)

I’m feeling over- medicalized, despite having initiated all this; it’s just part and parcel of it all. The professionalism and compassion exhibited by the staff really helps mitigate the way the medical system can make a patient feel a bit bruised after a time. It’s inevitable; you get looked over by five or six specialists and can start feeling a bit like a piece of meat or a puzzle to be solved. A good bedside manner helps a lot. I am very grateful for good bedside manners these days. I find myself increasingly grateful for manners of all sorts lately. 

I’m feeling hopeful, too. This is all overwhelming and weird and a lot to manage, but I’m hoping it’s the beginning of something good. Seeking balance, attempt… eleventy billion? I know it’s a process, not a thing you acquire and then cling to, or find and then just effortlessly have, and yet. And yet, and yet, and yet. We all want things to just happen without much work on our parts, right? We most especially want this when we’re feeling tired and a little run down, of course. It’s a bit like coming home after a super- long day at work and there’s nothing in the fridge except ingredients- no leftovers to be found. You know if you just do the thing and make yourself dinner you’ll be wicked glad you did, but you’ve got to dig down a little bit more to find the self that gives a damn enough to make a proper dinner instead of just some scrambled eggs with hot sauce and grated cheese. 

And while I know that this body and I will always be somewhat uneasy with each other- that this relationship will always resemble two roommates who are surviving a hurricane together- I’ve also been to some pretty awful places with some folks. I’ve seen the way that trauma can bind, bond, and even heal. I think about the way I talk with other folks who’ve dealt with trauma, whether they’re veterans, disabled, or come from dysfunctional families, and the way we understand each other, the way we heal and hold each other. It isn’t always pretty- it’s frequently not- but we speak our languages and instinctively know where to press to help with the pain. Maybe I can find that with this body, too. We’re surviving this monster together, I think. 

on conservation, emotion, and sitting with it all

I am growing Meyer Lemons in the studio. This has nothing to do with this post at all.

I am growing Meyer Lemons in the studio. This has nothing to do with this post at all. I just like to show people our new blossoms.

Man, sometimes it’s hard to do the right things.

I work really hard at energy conservation. That’s a funny sentence right there: “I work really hard at energy conservation.” A total oxymoron if there ever was one, but anyone who’s been ill for any extended period- ever have mono?- you know what I mean. You have to save up for when you need your strength. People frequently use the Spoon Theory to get this idea across. Want to spend time doing anything physical? You know you’ve got to take the beginning part of your day easy. You have to dole out your energy as though it’s a physical, tangible good.  Sometimes this can be tricky. Sometimes it involves complicated schedule arrangement: I can go out to a show on Friday night, but I better remember that’s happening because I’ll have to taper off my schedule for a few days beforehand. That’ll be a late night, and if I’m going to be awake, social, and alert enough to drive home, I can’t be doing “normal me” stuff for about 3 days beforehand. 

It isn’t impossible, but I’m still relatively newish at this, in the grand scheme of it all. My diagnosis came through in 2009, and I didn’t really get it for a few years after that. I fought it for a while. I still do, because sometimes this just doesn’t work. There are occasions when life kind of happens all over me and I have to roll with it. That’s life, for everyone. You just do the thing. 

The other issue is simply the stress of energy conservation. If I save here, what am I missing there? Which corners do I cut? There really isn’t any true winning: it’s sacrifice no matter which way you slice it. Everyone has to slow down eventually, of course. I try to frame it that way, which helps at times. There are other, worse days when I look in the mirror and remember that I am not, in fact, 75 years old, and that even if I were, I have friends in their 70s who are more active than this disease allows me to be, some weeks. Those days are not so great. 

It’s easy to simply slip into a sneaky hate spiral from this place: FORGET IT I HATE EVERYTHING I AM NOW A SHUTIN WITH MY MILLION CATS SOMEONE TURN ON MATLOCK ALREADY AND THEN GET OFF MY DAMN LAWN. And I have days that feel that way, I won’t lie. I’ll watch too many home restoration TV shows while knitting on my couch and loathe every person who turns down perfectly good houses because they don’t like blue walls and grumble to my dog about the people who paint over original Craftsman woodwork because SERIOUSLY, WHAT KIND OF MONSTER EVEN DOES THAT. It’s okay. Everyone has piss- poor days. 

Every so often, taking a day to sit and be with my feelings, even if they are ugly and scary and look a lot like “oh my god is this time forever will I never feel okay again I’m afraid I will never stop hurting this is scary and I am so tired and it makes me so angry why is this happening and why can’t anyone fix it,” that’s immense and frightening and absolutely necessary. Those feelings are huge and terrifying, and it took me forever to be all right with just being in the room with them. They are uncomfortable and so, so ugly, you guys. They are so goddamned unbecoming, my rage and impotence and just stark fear about this disease. I am afraid. I am angry. And that’s okay. I mean, it’ll never be okay, but it’s okay to feel that way, and it’s okay to take a little time to be ugly with those feelings. 

The important part is learning to take that damn day, and then taking it. You have to take that day, when the pain gets to be too much or when there’s a relapse; if you don’t stop to acknowledge these emotions they start to rip at you from the inside. So you stop, and sit with them, but then you have to just get on with the rest of it. This part isn’t brave, or inspirational, by the way. There’s not a goddamned thing that is heroic about this, so if you’re beginning to wander down that path, please, do me a kindness and don’t. It’s just life. It’s just the life I get- and it’s the life lots of people get. While I’m taking that day to deal with the crapfest of feelings my bizarre body has dealt me, life just kept trucking on, and I’ve got to pick up the thread and catch up. My life is very average, despite the whole artist studio angle, and involves mostly picking up animal hair (in all aspects, it’s just a shocking level of never- ending fluff of all sorts), and outside of my marriage, it’s rather unromantic. 

I tried—- for the longest time!—- to wriggle away from all of this. I think so many of us do something similar, whether we’re dealing with physical illness or troubles of other kinds. I can just work harder. Work longer. Work more. Run more. More pushups. Yoga. Write. Something, anything. Complicated meditation, anything to keep away from it all, but in the end, it always comes down to finding silence, stillness, the small things. I think I pushed myself into at least one relapse, doing all that avoidance work. We are such funny, sad creatures. It is both easier and harder to face things head- on.

My instinct has always been to attack any problem: anything can be fixed by simply working harder. In application, this has proved true roughly 70-80% of the time, and I suspect I might have a higher success rate with an improved concept of work—- and an improved concept of what a solution might be, too. Simply putting my shoulder to the wheel isn’t always going to cut it, that is the thing. Sometimes “the work” is in the sitting, in the being, and in facing even the ugliest of things. I am not made of glass, even though there are days when I feel as though I am a box of nails and broken glass inside: I’ve been around long enough to know that my emotions won’t kill me, I just don’t enjoy feeling them. That’s fine. I can face my own fear and rage and grief and yes, even my own absolute powerlessness, and I will still be here the next day. 

 

on the quantification of pain

throw in a notebook and a yoga mat and you've pretty much covered all the things I do

throw in a notebook and a yoga mat and you’ve pretty much covered all the things I do

Multiple sclerosis is bullshit, you guys. No pity party, but rather a shout- out to the percentage of my readers who are dealing with chronic pain diseases and/ or syndromes: this crap is for the birds. I am officially, 100% over this. This stuff is just plain tricky, in so many ways that I’d never seen coming when I received my diagnosis. When I walked out of Hopkins on the day I received my diagnosis, stunned, quiet, scared, I think that expected this to be a mostly medical adventure, all prescriptions and tasks, physical therapy, perhaps; some light exercise, maybe assistive tech. It is all that, but more than anything, it’s re- learning how to live. 

It’s been a long, long road, and there’s so much I’ve learned along the way. Seriously. I mean you just do: there’s a really steep learning curve, so you have to catch up, fast, but if you pay attention, there are some important lessons to be gathered along the way. Some are great, some are pretty shitty.

Pain is a teacher too, although I could live without it.

There’s this awful, bizarre belief on our society in the nobility of pain, that it can somehow makes us wiser, better people. There’s a nugget of truth hidden in there— some people do experience personal growth after facing adversity, but there’s no real way of knowing who they’d be or what they might have done if they hadn’t faced those difficulties, and in fetishizing their pain we reduce them to nothing more than their struggle. We also have this desire to quantify and qualify our pain: if one person is hurting, and their pain appears greater than ours, and another person is also hurting- but not as badly- then frequently the person with the lesser injury feels they have no right to speak their pain. This happens a lot around me, and it bugs the everloving shit out of me. Let’s talk about it, okay?

An example: I have these muscular twitches, called fasciculations, which are almost constantly going on somewhere in my body, generally in my quads, hamstrings, or back. They’re supposed to be painless, but when they continue on as long as they do they cause muscle fatigue and knotting, which gets to be painful and can cause some joints to lock up if I’m not careful. I’m really not very enthusiastic about it. It’s also just part of my life. So when Sam feels sore, or his back hurts (he has arthritis in his low spine- I know, we’re a mess), he’ll frequently keep it to himself. When he mentions it, he often says things like, “I feel like such an ass saying this when I know about your back,” which just… I mean, I get it. I DO. I really, really, do.

It’s just— here’s the thing: you really can’t quantify pain. It can’t be done, folks. Sure, you can do the emergency room 0- 10 scale, that’s a real thing, but when it comes to your pain vs. your neighbor’s pain, that’s just bullshit and it shouldn’t be attempted. My life, my body, my experience is mine, and I’m in it, living it, going through my day. When I experience pain it’s real and sucks and I hate it and hey, thank you for acknowledging it and how much it affects me and how shitty it is.

The reality is, though, that everybody’s pain is absolutely relative to their lives and their bodies and their experiences: while they may not have MS, the very fact that they have never experienced that level of pain most likely means that their bodies are interpreting the pain they experience now as quite distressing, and that bears acknowledging. This doesn’t mean I’m racing to my husband’s bedside playing Florence Nightingale every time he has the sniffles, but it does mean that when he has the flu, I take it every bit as seriously as he takes one of my remissions. (When that man gets sick, he gets whoa- nelly levels of sick. His immune system plays hardball.) And whatever he’s experiencing? ALSO VERY REAL, and bears acknowledging and sympathizing. People are people and we all need compassion. There is no hierarchy of pain or suffering: it is all awful.

It works across all levels. It’s hard. The phrase “first world problems” grates on me, especially as someone who’s seen the third world. I get it: when I came back from Afghanistan, it drove me directly up a wall to see someone genuinely distressed over an improperly prepared latte. It still upsets me, actually. This is not a real problem, unless you count one of perspective. Then again, my perspective was a little screwed, too: I had no idea what that person’s morning was like, or the night that came before. It’s a challenge, and it’s challenging to hold onto that mindset, but it’s worthwhile to try, lest the world get too aggravating altogether.

I hold that pain, when genuinely expressed, is relative: we don’t know someone else’s struggle, and when they talk about it, please, listen with respect and kindness. I know where I’ve been, what it’s felt like, when it has cost me and when it has given me joy. I should hope that my ridiculous body, and its random, ridiculous, DNA- induced decision to turn on me won’t deter others from talking about their pain of any kind. Pain is a language I speak, you guys. Disabled folk, we get pain. (We also have all the best pain relief tricks.)

(This message brought to you by giggling over the phrase, “multiple sclerosis is bullshit” this morning while I was getting ready to head in to the studio, by the way. Inspiration comes in the weirdest places, I swear.)

on losing and regaining the thread

 

Adipose toy and ball of brown wool yarn.

speaking of smaller things

 

I was at Homespun Yarn Party last month and someone told me I should write here more often.

Boof.

I agree, though. I should. It’s good practice, it’s good for me, and apparently there’s some value to others in it. I enjoy the conversations that are generated in various spots by some of these posts. And it’s funny: I frequently start entries all the time— in my head, on my phone, scribbled off on teeny tiny bits of paper that end up wadded in my pockets, only to be found months later and puzzled over. When did I write this? I’ll think, smoothing out wrinkles, trying to read the fuzzed- out pencil. It’s almost always pencil; so inconvenient, but I like the way it always works, and the way it bites into the paper.

It’s hard, though. So much of what’s happening right now affects me but it isn’t mine, if you know what I mean. It’s all indirect. Without ownership, I don’t feel comfortable commenting on it or even on my feelings around it. Kiddo being off in college, my mother- in- law’s illness, the issues in Kiddo’s boyfriend’s life, how my husband deals with his mom’s illness, none of that belongs to anyone but those folks. My reactions to those things? Yeah, that’s all mine, but in sharing that, I share them, and— yeah, it’s okay to do that in passing, but I’m not down with me getting into the nitty- gritty in public. You do you, no judgment, but I’ve got to do me.

All of that’s a pretty huge section of my internal life these days, though, so… I don’t know. Every time I sit down to write, this all just seems to come up. I mean, here I am, talking about it, right? They’re not the only things in my life by a long stretch, but they sure are the biggest ones, and it’s hard at times to see anything but the big things. I’m losing my ability to draw down, surely. Getting caught up. It’s inevitable to some degree, but I’ve also allowed it. I haven’t fought it for a while; for a period, it wore us both out, definitely, but realignment is certainly in order, and I’m trying.

Back to the smaller things, then. It isn’t as though we can ever forget these big things- god, they’re ever- present, it’s not as though they’re going away- but back to my mindfulness, quiet, and seeking. I simply lost my thread again, that’s all. It’s so easy to drop, but never hard to find again. How do I forget this so easily, and so frequently? It’s been mindfulness and the small things that has always saved me and kept me balanced.

When this happens— when I “lose the thread”— there’s always this urge to beat myself up over it. The “How can I be so ridiculous?” refrain seems to be pretty common for everybody at some point. I try to give it as little energy as possible, but it never fully goes away, and I do think the thought merits a small amount of impassive analysis: How, really, did I get here? I let meditation become less of a priority. I stopped really looking around me and started powering through my life. I started using old “tools” from my life in corporate work to get through challenging situations- like skimping on sleep, a thing I can do for a while but which makes me miserable.

Cool! I can do better. Unhealthy habits like those can be dropped, and I’m pretty clear on how to fill the gaps. It’s funny how approaching the question without judgment makes finding those issues— Where am I going off- track? makes fixing them so much easier— Right, I’ve really got to pay more attention to the minute- by- minute of my days, I’m missing everything. Nothing is ever so far gone it can’t be put right again. There’s no use beating your head against the wall.

So I’m back at it: sleep, meditation, blogging, crafting for fun, seeing people in my spare time, paying attention. Slowing down. All that good business. Do you remember when you were a kid and thought you’d hit some magic age when you’d be done, set, complete as a grownup? NO MORE GROWING UP FOR THIS HUMAN TO DO. Almost as though you’d finished cooking, like a turkey or a beef Wellington? Yeah, me too. Surprise!

in which we talk about breathing

handknits in the studio window

handknits in studio window

 

It’s been stressful, of course. Isn’t it always? Who doesn’t have stress? It’s a part of living. Me, I’m trying to get the studio ready for people. People, everybody. Like, John Q. Public levels of people. We’ve begun having Knit Nights, which are really just Craft Nights (I should start calling it that instead, maybe?) every Wednesday evening, which was a HUGE THING for me: what if they hated how industrial the space is? (They didn’t. It’s a seriously cool space.) Also: it’s my super- special safe space. Opening it up to everyone on the regular— it gave me the equivalent of emotional hives, I guess. I avoided this for so long for exactly that reason, almost hoarding the space, which is just silly. THIS IS WONDERFUL. I NEED TO SHARE. Sharing is caring, etc, etc, it’ll all be okay. And it was!

Now, we’re putting together classes. We have knowledge, and people want to learn! Why not, right? Oh, yeah: THE EPIC LEVELS OF WORK INVOLVED IN PUTTING TOGETHER CLASSES, PROBABLY? Possibly that. Almost certainly that. But to hell with it! CAUTION, MEET WIND.

Oh, god.

Let’s stop thinking about our stress. It just makes things worse. Let’s talk about coping. I’m crap at self- care, but this year I’m trying to make it priority.

One of my best friends is moving back to Maryland soon. It’s a gift, it really is; it came from out of the blue, a text: “How about a late Christmas present?” Indeed, sir. He and I were in Afghanistan together, in the DoD before that, and stationed together in the UK, way back when we were first coming up; he’s another safe places for me, and I’ll be glad to have him back. I find that lately when I’m stressed out I’ll go back to that moment of sitting in the car, that second when my phone dinged in my hand and that text came through, the sheer brilliant shot of happiness that I felt in that moment: my friend was coming home. Oh, this.

I don’t much care for visualizations, overall. (Allow me this break, it all circles back, I promise.) They tend to make me uncomfortable. I have no idea what that’s all about, but when I’m in a class, or doing continuing ed as a teacher and it comes up, I just get a case of the weirds- it doesn’t work for me most of the time. There’s something about someone else guiding my imagination- it puts me off. (Which, by the way, is a HILARIOUS thing for a yoga nidra guide/ teacher to say.)

But so many of my students like and benefit from them, and there are a few I use every so often. That friend who’s coming back to Maryland? When we were in working in the DoD together he taught me a trick that I think had been circulated through our group of friends as a survival technique, a way to make it through the daily cubicle grind and political labyrinth of government work. It isn’t always bad- don’t let me give you that impression- but when it is bad (say, just as fiscal year comes to a close, for example), it can be pretty tough.

So when I’m feeling ragged and I only have a moment or two to decompress, I’ll lock myself into a bathroom stall, lean against the door, close my eyes, and run this visualization, real quick: Breathe in pink, breathe out green.

It sounds so, so cheesy, I know. I KNOW. I mean, that’s some seriously dippy, dorky woo right there. I am not a fan of woo, either. Also? IT WORKS. It really, really does. Ten deep- breath repetitions of that later, I wouldn’t call myself 100% soothed, but I’m generally in a much better, calmer, more “me” sort of place. Part of it is physiological: deep breathing, it works every time. Bringing more oxygen into your system helps: we tend to tighten up and breathe from the chest when we’re under stress, but it’s also helping us access the parasympathetic division of our autonomous nervous system. This is the part of our nervous system that controls our heart rate, the dilation of our pupils and blood vessels, and can bring down many of the “fight or flight”, panicky- feeling, or overall stress responses from the other half of our CNS, the sympathetic nervous system.

Deep breathing alone doesn’t usually do the trick fully, though: it has to be focused deep breathing, and that’s why the visualization really works here— it brings your focus in to the breath and keeps it there. Taking our attention down to just one thing and holding it there for a period of time- even as brief a period as ten long full breaths- that’s important. It keeps us away from upsetting thoughts and distractions, all those things that might be causing us stress and pain, and that’s huge, but it also draws us inside, and that’s even better.

We can create a quiet space, internally. This is more of a long term project, but if you keep doing this sort of thing- just stopping periodically and taking long, deep breaths, focusing on them, doing a quick visualization alongside your breathing- you’ll start creating that space naturally. You can carry that silence with you, something you can tap into when you need it— and seriously, people need this. After years of teaching meditation, one of the most surprising things I’ve learned is how very deeply people need this without ever realizing it until they’ve dealt with it: our lives are so noisy, folks. If it isn’t just everyday life- cars, planes, music, TVs, the constant hum of electronics and engines and all that- it’s information. Email, social media, the Internet, it’s both addictive and overwhelming. Finding stillness, anywhere, can be a shock, but a welcome one.

And so: as I’ve been dealing with the (mostly positive) stress of trying to get everything arranged to open the studio, I’ve found myself doing this more and more frequently. It’s not a bad thing: it reminds me of my friend who’s coming back to MD soon, which is always a good thing, and it also helps to ground me. It reminds me to breathe, and gives me a quick moment of stillness in the middle of all the madness. It gives me room. I found myself taking a few deep breaths in the back of the studio late last week and thought that with all the quick meditation tricks I’ve been using lately to get through this transition, I should be sharing, too.

So much of what I use in my daily, non- sitting life, is beginner- friendly: I keep thinking I should pop more meditation work on the blog. Ahhh, something for my copious spare time, surely. :)

in which we are home again, home again!

lonely highway

Nevada

We’re back from California, and oh, friends; what a change, let me tell you. The drive gives us a bit of time to acclimate, I suppose, but going from the 70- degree, sunny days of Santa Clara to Baltimore’s approximately 25- degree snowstorm in five days? Boof. Booooooooof. Where do I register my formal objection?

It was a great trip; I shouldn’t complain about anything, I’m a ridiculously lucky girl. The van was a trooper, we had fantastic weather throughout, there were minimal traffic interruptions, it’s all good. (Never try to cross St. Louis during rush hour, folks, seriously, it is not okay, but that was my mistake.) Sam and I are still in recovery mode, but we’re catching up and we’ll be ourselves in a day or so. The show itself was fantastic- we worked a shared Team Awesome space with Kate & Nancye of Dragonfly Fibers and Karida of Neighborhood Fiber Co, and we saw all of our West Coast friends, which is always a treat. And just… California, you guys. It really is great. It’s beautiful and the food is wonderful and even in February, even during a drought, the weather is perfect. I can’t believe I lived there and then left.

Outside Gilroy, CA

Outside Gilroy, CA

Okay, okay. So- more importantly, though, I got to see my Dad and my stepmother, Lily. They live in southern California, which means seeing them, ever, is a major challenge. They drove up for the weekend, and Sam and I spent our evenings with them, which made this show a mixture of work and family reunion. I was super- excited I was about this show, folks. I mean, I always enjoy gigs— they’re a lot of fun, exhausting as the work is— but seeing Dad and Lily made this one special. It was pretty great to have some time with them, in the middle of all that chaos- to step away and just be with family. I don’t get time with them nearly enough— those 3,000 miles are a pain in the ass, no lie, but at least we have this show, which gives us one good trip west a year.

Ghost Rock, Utah

Ghost Rock, Utah

On the way back, we drove through Colorado, and I think that’s an entry unto itself, actually, but obviously— yes, we stopped off in Denver, and yes, it really is amazing. I have thoughts- lots of them- but let’s put those into a stand- alone post. It’s funny, though; I always post photos of how gorgeous Utah is, whenever we drive through, and as we drove through parts of Colorado I felt so compelled to do the same— holy cats, there are some unbelievable swaths of nature out there, cliffs and mountains and chasms and canyons, and the colors, it’s astounding. I felt very restrained the entire time we were driving through Colorado, as though any shout- out to the beauty of Colorado would be misinterpreted as a pothead’s 420 anthem, which gives me a moment of sad pause. Obviously I’m still carrying around some residual prejudices about medical marijuana, a useless nugget of suburban shame taking up valuable space in my head. How interesting, to find this stuck in my head after speaking out publicly, after writing and talking and working on this issue: I’m still afraid people will think I’m a stupid stoner. I thought I was over that; I am definitely not over that. Good to know— I need to work on it. How adorable to stumble across that in Colorado. I like that.

I’m happy to be back, bundled up in my little house, even if I am missing my first day of work to a snowstorm. (Seriously, Baltimore?) Sam and I are shotgunning the shows we’ve missed (Broad City, you are the Very Best Thing) and trying to figure out meals from our meager pantry— you don’t leave much food in the house when you go away for two weeks, so this whole storm business, it’s a bit poorly timed for us. I predict a diet consisting mostly of waffles and PopTarts over the next day or so, supplemented by Trader Joe’s veggie Birds Nests. What even ARE those things, other than addictively delicious? Who even cares, really. We’re surrounded by all of our animals, we’ve called/ texted/ emailed all our people to let them know we’re home safe, and it’s at least two weeks until we’re on the road again; contentment is the name of the game today. I hope that wherever you are, you’re warm, safe, and content, too.

 

 

PS: When I got back in town, I found a TON of letters in my PO Box! I had no idea there would be so many people excited about the pen pal/ lettermo idea. I’m writing back to a couple every day, so if you wrote me and you’re waiting to hear back, I’m on it! And if you’re interested in being pen pals, I’m still writing to folks, so don’t be a stranger- go ahead and drop me a line! I’ve taken to writing letters at least once a day; I’m working it in as a daily practice, and I’m interested to see how long I can keep doing this. It’s a lovely thing, this tiny spot of time just to write to someone- so if you want to be a part of that with me, please, feel free. :)

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