All posts by Sarah

in which I am done being a judgeypants

Close- up image of white and pink flowers.

This photo has nothing to do with the content of this post. It’s just a pretty photo I took of some flowers we had on our front porch. Hooray!

I made a daring choice this morning, folks. I wore yoga pants to the studio. SCANDAL, I know.

They were a size too large, so they were a bit too loose, but they were yoga pants, sure enough. I almost changed my mind at the last moment, but stuck to my guns and did it anyway. My legs were bothering me this morning, and I’ve been working on listening to my body- really trying to be good to myself- and I wanted to wear something I knew wouldn’t bother them.

Clothes have been a tricky thing for me lately. I’ve been replacing my wardrobe now that my weight seems mostly stable, and now that we are in summer, this is the hardest part. I have a lot of concerns with heat. Part of my MS experience is Uhthoff’s phenomenon - a form of heat intolerance which brings on temporary symptoms of my disease when I’m exposed to high temperatures. I’ve spent most summers hiding out indoors as much as I can, but that hasn’t been enough, even with cool packs; I do have to go outside sometimes, and the accumulated time outdoors seems to get to me.

So, I’m modifying what I wear. It’s a big change. I’m modest by nature: by way of example, I mentioned I’d bought shorts recently and that was met with outright disbelief by someone at work. Disbelief, folks. It’s modesty at that kind of level. Most people had no idea what my knees looked like before this year. I’ve only just started wearing sleeveless shirts and dresses, although that has more to do with the lipoatrophy from early Copaxone injections than anything else. (I’ve clean run out of fucks to give. Behold, my dented arms!) Wearing yoga pants out in public when I wasn’t headed directly to a gym or yoga studio seemed pretty impossible until very recently.

I’ve started thinking about that modesty lately, though. Some of it I can source: “Halter tops are for hussies,” comes my mother’s voice, and “You should never leave the house without at least mascara and a swipe of something on your mouth, Sarah, and never show your shoulders and your knees at the same time” from my grandmother, who would be very disappointed by the state of my daily pout.

Some of it comes from nowhere, though. No yoga pants in public? Who made that rule? It’s not exactly formal attire, sure, but who genuinely cares about my pants? And how public is my studio in an industrial park in south central Baltimore, really? AS IF. Who’ll see me? The people who work with me? They dress the same way I do, and sure as hell don’t give a damn what I wear. Who are the boogeymen?

And that’s it, really. The boogeymen are who we hold in our heads, the judgey voices that tell us how we should behave. My grandmother’s opinion on lipstick, my mother’s opinion on halter tops, and… well, someone’s opinion on yoga pants. Possibly mine, and I think that’s the worst boogeyman of them all: our own judgement.

Oh, I’m so sick of my own judgement.

I’m done being a judgeypants.

I don’t have all the answers. I don’t have even half of them. The truth is I really don’t know jack shit. Like anyone else, I’m just feeling my way along, stumbling and fumbling, figuring it all out as I go, and making a gigantic mess of it along the way. I’m okay with that. Life is messy, like good food, and I enjoy mucking my way through it. What I’m not okay with is abusing myself as I go. I have no call, no place talking to myself the way I do some times. I would never let anyone talk to the people I love this way.

There’s no reason to judge myself for showing a perfectly average amount of skin, or for showing any other amount of skin, either. Bodies are bodies and bodies are okay. I should stop being such a giant jerkward about this. I have no idea what this is about but it’s weird and it makes me behave in ways that make me genuinely, physically ill and that’s just ridiculous. If I’m going to be a judgeypants about anything, I should judge that behavior and deem it too stupid to repeat. I could be spending my energy on MUCH more awesome things, like pretending I’m Tim Roth.

Same goes with accumulating summer clothes.

Side note: the sun feels so nice on skin, you guys. I know there’s a general aversion to the word “nice”, because it sounds a bit trite and a little dull at times but honestly, it’s the perfect word for this: the sun feels just so damn nice. How did I forget this? I totally forgot. It’s nice. Nice nice nice nice nice nice NICE.

So: midyear resolution to be less of a judgeypants to myself. If you see me, and I’m significantly less dressed- possibly even looking like most everyone else, even!- it’s part of this new health resolution thing I’ve got going on, inside and out. Go figure.

7 Comments
by Sarah on June 4, 2013  •  Permalink
Posted in Health, MS, Multiple Sclerosis, Self- Portraits
Tagged , , , , , ,

Posted by Sarah on June 4, 2013

http://onmytiptoes.com/2013/06/04/in-which-i-am-done-being-a-judgeypants/

on what I will allow

My very dusty running shoes.

My very sad, very dusty running shoes.

I’ve been avoiding writing this entry for long enough, I think.

So this was the relapse that I don’t come roaring back from, folks. It was inevitable. I’ve been doing my checks, carefully testing my limits, investigating how far I can go, looking for all the indications of disorder, and well, hey: I still love my Solumedrol infusions for pulling me together in a pinch, that’s for damned sure, but I think I need to acknowledge that it isn’t actual magic. The infusions snapped my body out of a tailspin, and that’s a good thing, but there was some damage this time, and I’m going to have to deal with that.

When we talk about body- hatred, we’re usually talking about body-image; the way we see our bodies, or the actual size of our bodies. I’m not immune to this sort of body- hate, either; I’ll slip up and gripe about having nothing to sit on occasionally, too, but in general my body- hate is very specific and focuses on ability. For the past near- 20 years, my relationship with my body has been very focused on ability; until my disease began to make serious inroads, my body gave me pleasure and made me feel very, very strong. It was very strong and very capable. That’s how I saw myself: strong and capable- and my body was a large part of that image.

Transitioning to a life in which my body is unreliable and gives me a great deal of pain is- I don’t know. Are there words? (There are words. I just don’t know if I’m up to typing them out today.) It’s disappointing. Frightening. Disorienting. I know who I am, within this body, but I no longer understand the vehicle I’m driving.

Part of my left leg is still numb, and while it mercifully lifts and responds, there are still some coordination and strength  issues. My left arm is still strange, and while it works, it’s weak, and only gives me about 60% strength— stupid and awful, my smart hand being the one that is going, there’s some irony there. Overall, my entire left side is off, but still- the infusions improved it dramatically: I am grateful for them.

I haven’t been brave enough to take this entire mess out for a run yet; I’m nervous, in truth, and it’s been so damned hot out. With the weather hitting the 90s, I’m back to hiding out in the air conditioning again— ah, the sweet taste of going completely stir crazy, that’s the good stuff. There’s that to look forward to, as well: I’m not really built for indoor living, but high temperatures and MS are a bad mix, so summer is a bit maddening.

I need to take myself to the gym, though, to really get a sense of where everything is. I have a feeling that I should be asking for an extended physical therapy referral at my follow- up, which is something I’ll be coming to with mixed feelings. Despite my honest love & admiration for physical therapists, I’d rather eat liver and onions for a week than go see one. They’re great, and the work is totally effective, but it’s just no damned fun to go through as a patient, folks- or at least, that was my experience putting my knee back together after I’d taken on running the hills of California’s Monterey Bay area one too many times. My physical therapist was terrific- kind, firm, and informative- but the work was not enjoyable. I know that this is something I need as a part of my life on a regular basis, I just… don’t want it.

I don’t want it. I’m having a bit of an internal strop over the whole thing, to tell the truth: I’m being a total child about the entire business.

I’m allowing it. I’m indulging myself: I’m okay with being a bit of a baby about this, as long as I actually DO THE THING. I’ve been so focused on keeping a firm jaw about doing the right things- This Is How I Will Take Care Of This, No Whining Permitted- and really, if this were one of my friends, or my kid, or my husband? You are damned right I’d listen to them bitch about physical therapy, as long as they MADE THE STUPID APPOINTMENT. So this is my gift to myself: I’ll let myself be less- than- thrilled, both about physical therapy and the need for physical therapy. Just the part where I write that feels like a release, it’s crazy. And I am looking forward to the payoff- the results, any improvement- very very much. Even the somewhat scary TENS units sound sort of intriguing. Also sparky and potentially burning, but… maybe good for neuropathic pain and muscle spasms, too. We’ll see. I’m allowing myself to be optimistic, because I’m allowing myself all sorts of things this week.

I’m off to allow myself a pint of Jeni’s ice cream right now, actually. What are you giving yourself this week?

12 Comments
by Sarah on June 3, 2013  •  Permalink
Posted in Chronic Illness, Disability, Health, MS, Multiple Sclerosis, Running
Tagged , , , , , ,

Posted by Sarah on June 3, 2013

http://onmytiptoes.com/2013/06/03/on-what-i-will-allow/

on falling

Only those who attempt the absurd achieve the impossible.

Only those who attempt the absurd achieve the impossible.

 

This life, it isn’t always easy.

It’s legs that don’t work correctly, a clouded mind and hands that feel like they’re on fire.

It’s a husband with a rare and nameless blood disorder that’s waiting for the next opportunity to steal ability, thought and possibly his life.

It’s war, an endless war that takes my friends and doesn’t give them back or gives them back, changed.

It’s coming home from a war and never being quite right again.

It’s a family that isn’t quite mine and doesn’t want to be.

It’s a family that is mine, through marriage, and is hurting, and there isn’t a thing I can do about it, because bodies are bodies and cancer is a bitch, and all we can do is wait and hope and it is hell and I hate it.

Some times, this world is just one giant goddamned wall, and it’s all you can do just to lean your body against it and breathe.

And my loves, I’m here to say it’s okay.

It’s okay.

Some days, this life is also me, showing up in Hartford, a broken and frightened thing, and being welcomed with open arms.

It’s a painter in a handmade Red Sox dress, editing wedding photos in the best bedroom in the whole world, dropping everything because I’ve called and asked if she’s home tonight.

It’s my nephew, a miraculously towheaded boy with a shy smile that could light an entire state, tiny as it is.

It’s an unbelievably sweet note from an brilliant and accomplished woman who hardly knows me, but is very kind to me.

It’s walking eight miles in Boston, because infusions are medical magic, and my leg came back. Oh, bless.

It’s one- man bands in parks on perfect days.

It’s the weatherman being wrong.

It’s ridiculous conversations with strangers, borrowing lighters and breaking tension.

It’s moving from the word okay to the word good, and from frightened uncertainty to tentative happiness.

It’s wondering whatever happened to Schnarl.

It’s not getting mugged when I came home that night, and instead letting someone use my phone and having a really short, sweet conversation with a guy who needed to call a cab in the middle of the night, in the middle of the city.

It’s having faith.

It’s a woman with a famous voice and painted arms welcoming me into her home and being my backup: there are no words, no matter how hard I try. She is a miracle, and always has been. I’ll never get over the luck in my life.

It’s feeling like you’re falling, you are helpless and lost and falling and realizing that the world has reached out its arms and caught you. It’s realizing that this happens, that it can happen, that you can feel as though you are falling or falling apart or just plain coming loose at the seams and it isn’t like the old days any more: the world will catch you this time.

The world caught me this time.

Forget everyone who ever let me down: I don’t care about that, or them, or any of it. I don’t mean that in a “screw them” sort of way- what I mean is that I literally don’t care about any of that, and instead I deeply, passionately care about everyone and everything that held me up over the last week. I’m not even beginning to cover it all. I can’t even come close- last week was a Week of Weeks- but the love and luck in my life by far outweighs any negativity. I am, and have always been, a very fortunate girl.

When people who know my story ask me how it is that I am so happy, this is what I will tell them: I am happy because of all of the small, beautiful things, and because some times, when you are falling, the world reaches out its arms and catches you.

13 Comments
by Sarah on May 17, 2013  •  Permalink
Posted in Chronic Illness, Creativity, Disability, Family, Friends, Health, MS, Multiple Sclerosis, Pictures, Self- Portraits, Simplicity, Sundries
Tagged , , , , , , ,

Posted by Sarah on May 17, 2013

http://onmytiptoes.com/2013/05/17/on-falling/

in which I fret, a great deal, over nothing

I’m waiting for the home health nurse to come and install my IV port this afternoon. I’m nervous.

Giving myself a shot every day doesn’t make me immune to IV jitters. I keep thinking I should be completely calm about this, but I’m not; I’m a bundle of anxiety, hoping I don’t vomit on the nurse as she works. She doesn’t sound like last year’s Warren, who jovial and booming; she sounds a little more jittery, and I know this isn’t just me projecting as Sam could hear her through my phone. Agh.

I wish I had bigger veins. I want veins as big as a turnpike. Bigger than a turnpike. What’s bigger than a turnpike? Is a freeway bigger than a turnpike? I want veins as big as a freeway, but only if a freeway is the thing that’s bigger than a turnpike. Oh god, I’m a nervous wreck. Someone just come over and stick me already, please.

I wish there were vein exercises I could do. Where are the Womens Fitness articles for my problem area, then? 10 Great Moves For Shapley Veins! I’d buy that issue. Instead, I just hydrate. That feels a bit ineffective. Ooooh, look at me. I’m drinking water. This is really doing something.

Aaaaaaaaagggggggghhhhhhh.

IVs aren’t really that bad. Wearing an IV is no big deal at all, outside of making me feel sicker than I am- there’s something so very hospital- ish about them. The stick itself is always a bit brutal for me, because it always seems to take me a minimum of four tries, and I have a thing about it. Shots, I’m good. Blood draws, no problem. IVs? I’m all a-quiver and wobbly inside. What the hell? A year in a war zone, house spider killer, resident dealer- with- of- all- bodily- fluids– I’m great with all of that, but come at me with an IV needle and I go all to pieces. Way to stay rational, Sarah.

I’m so eager to get started, though. I move through the house at an almost diagonal sometimes, forgetting my left half can’t keep up with my right. It’s still so early in this flare, so I don’t have many of the indicators that would usually remind me that my body isn’t fully mine. I’ll get up from a chair and think my body works the way it used to three weeks ago, and I’ll be surprised when it doesn’t. I want to get moving on infusion therapy and get my left side back, if it’s coming back.

And that’s part of all of this: the mystery of it all. MS is like a series of really crap presents; imagine the bitchiest Magic Eight Ball, waiting for you at the end of ever flare. Every time you have a flare, you get the chance to shake the ball. Do you get the use of your leg back? Reply hazy, try again! Do you get your sight back? Outlook good! Does the pain in your hands and feet ever stop? Signs point to yes! Will those crushing headaches ever end? Concentrate and ask again! You never know, after a flare, if what has happened will stick with you forever, or if it will leave.

I’m already over the waiting. Once my infusion therapy is over, I’ll have my answer, and I’m ready. This isn’t so bad, but I’d like to know if it’s my new reality.

All right, it’s noon, and I have an update on the website due any moment- and a home care nurse due in any second as well. I should get back to the real world, and fretting over it. Wish me luck, all. Take care of yourselves, and each other. Don’t worry over me- I have Sam filling me up with Nepali food (I mean, how lucky am I, seriously?) and this little lady watching over me.

 

Emma, May 2013

Emma, May 2013

7 Comments
by Sarah on May 4, 2013  •  Permalink
Posted in Chronic Illness, Family, Health, Home, MS, Multiple Sclerosis
Tagged , , , , , , , , ,

Posted by Sarah on May 4, 2013

http://onmytiptoes.com/2013/05/04/in-which-i-fret-a-great-deal-over-nothing/

in which there is possibly too much talk of keelhauling

working basket, May 2013

working basket, May 2013

You guys. YOU GUYS. I can’t even begin to address the enormous outpouring of love and support you’ve been sending my way over the last few days. It’s really amazing. THANK YOU. THANK YOU ALL SO MUCH. I have so many comments and emails to respond to, and it’s a little overwhelming, but I needed to tell you how much it all means to me. It isn’t why I started writing here again, but it means the world to me.

Things have been good here. Slow, silly, a little mad, but in a good way. As my leg grows increasingly useless, I’ve begun to imagine myself as the key figure in a ’70s pirate-sploitation flick. (I know, I know. But in my world, these things definitely DO exist.) I limp my way through the house, menacing my family, shouting “BEWARE, DEADLEG EYRE IS COMING FOR YOOOOOOUUUUUUU!!!!!!!” and generally threatening to keelhaul anyone who displeases me. That guy who just drove down our street at about 50 mph? KEELHAULING. The person in the Netherlands who tried to fraudulently charge $11.53 to our business Paypal? DOUBLE KEELHAULING. Is that even possible? Deadleg Eyre doesn’t even care, we’re giving it a try.

I should probably cut down on the keelhauling talk before the home nurse shows up. I don’t do so well with IVs— tiny, fussy veins and a bad experience with an overly- confident nurse- in- training— and threatening my medical professionals with obscure forms of pirate- murder is probably a terrible idea.

So- it’s strange here. And that’s good. We are not sure what will happen- will this treatment work? Will I get my leg back? Will the strength in my left hand return?- but we are retreating to our standard comfort behaviors, and they are working. For anyone in a similar place, those behaviors are:

  • Make believe, usually somehow incorporating whatever is happening to our bodies
  • Comfort food (braised cabbage in cream, Lebanese, fancy- schmancy ice cream, roasted vegetables, quinoa salads, AVOCADO EVERYTHING, all of the tea)
  • Watching everything ever made that even vaguely relates to Sherlock Holmes
  • Family nail- painting parties
  • Knitting
  • Board games
  • Painting teeny tiny canvases

I want to make an enormous vat of borscht to take us through this, but that takes most of a day and I’m meant to be resting, so I think Sam might shake me if I take that on. Even the fierce pirate Deadleg Eyre can’t dispute that spending a full day making delicious soup isn’t really “resting”. That’s okay, though. There’s plenty of time for borscht once I’m done with IV therapy.

In the meantime, I have this guy watching over me…

Barrett on nurse duty, May 2013

Barrett on nurse duty, May 2013

… and I’m hopeful about things, and I have a plan for the next five days or so. And that’s all right.

6 Comments
by Sarah on May 3, 2013  •  Permalink
Posted in Chronic Illness, Disability, Family, Health, Home, MS, Multiple Sclerosis, Yarn
Tagged , , , , , , , , , , , , ,

Posted by Sarah on May 3, 2013

http://onmytiptoes.com/2013/05/03/in-which-there-is-possibly-too-much-talk-of-keelhauling/

in which I revisit humility, self- care and infusions

late afternoons in the studo

late afternoons in the studio, May 2013

My left leg isn’t working properly.

It began yesterday. I got up from my desk and it felt as though my foot was asleep, only without the pins and needles. I just couldn’t get it to pick up properly; it wanted to drag along the ground with each step, a classic sign of dropfoot. Oh, you nasty piece of work, I thought, shifting my gait. My ankle felt unsteady under me, and the muscles of my knee felt uncertain, too, in this utterly strange way- almost as though they wouldn’t quite listen to me. I have such a hard time explaining this experience to people who’ve never experienced it.

It seemed better this morning but came back by the afternoon. I failed my bilateral neuro strength tests with Sam. We are such pros at this by now, running our checks on each other each time something crops up on each other. Push, pull, point, flex: arms up, take one finger and touch my finger and then your nose as quickly as you can, close your eyes, stand on one leg, now the other, good, good, good, wait. Wait. Again. Again.

This life, you guys. It is not what I expected.

This is not what I expected.

Life is so interesting. I need to focus on that today.

I am learning again, to be humble. To make the right choice. To come correct. I called my neurologist right away- no screwing around this time, thank you very much, I’ll pass Go and collect my $200, oh hell yes. I see the oh- so- dry (but utterly delightful) Dr. D tomorrow afternoon and who knows? Maybe this time I’ll walk out of his office with something that isn’t a Solumedrol infusion gift pack. Or maybe not, but at least this time I know what I’m in for.

Is it absolutely ironic that I was looking to up my mileage when this happened? Sure. Is is bleakly hilarious that I was considering getting back into boxing just as this hit me? Yup. Am I maybe- a- little- beyond- livid that this hit me when I really, really need some physicality to work out my feelings? WELL YES, YES I RATHER AM. How many push- ups can one girl do before she works out all her angst? I don’t know if my arms are up to the challenge of all my sturm und drang yet. Harrumph.

In the end: there is no negotiating my way out of this, no deal that can be struck. There is no avoiding it, either. There’s nothing for it but facing it, which is brutal: this is my inconvenient reality, and “inconvenient” is the nicest, most polite word I have today. I am hard at work on nice and polite today.

I don’t feel nice or polite today.

I feel like a box of nails and broken glass today.

I can’t be the only person in the world who feels like a box of nails and broken glass today, though, so I am aiming for nice and polite. Or more accurately: I am aiming for something better than nice and polite. I am aiming for kindness and compassion. I am trying to take how deeply furious I am with this ridiculous, stubborn leg and funnel that energy into work, to take how disappointed I am over another possible flare (WORK OR DON’T WORK, body, just pick one) and extend as much real kindness, connection and compassion as I can give to the people around me. It isn’t easy, but it’s impossible that I’m the only one who’s unhappy this week, and if I’m working through it, someone else is too.

That’s the real world: every time I meet another person, I never know what they’re carrying that day. I forget this some times. I forget this more often than I’d like, honestly, so I keep it written in places where I’ll see it and be reminded: the world is so much bigger than whatever I’m worrying about at any given moment.

———————–

An update:

I wrote the above two days ago. I saw Dr. D. today, and after the exam we’ve opted for Solumedrol infusions after all. He feels we’ve caught a flare early, and is pretty optimistic about my outcome after treatment, which is reassuring.

I’m feeling a little conflicted. I felt as though I’d won ten points in a Chronic Illness Olympics when we mutually agreed I’d been “much less of an idiot” this year in catching the relapse/ flare so early: self- care was pretty high on my list of priorities for 2013, so— WINNING? On the other hand, this is a confirmed flare/ relapse; why am I taking all these pills and a daily shot again, then? NOT WINNING. This takes me to a firm once- annual flare/ relapse rate.  I don’t like those numbers, but I’m not sure I like the idea of making a switch in my disease- modifying medication at this moment in our lives, either. It’s a bit of a Catch- 22, and on the table for discussion in my follow- up appointment after the infusion therapy. On yet another hand (I now have three hands, hurrah!) there are pills as options for disease- modification, so, hey, I think we’re back to WINNING now, and that’s pretty awesome.

I’ll miss Maryland Sheep & Wool, which is a disappointment, but I will survive. With any luck I’ll be back on both feet and disconnected from my tubing in time for the trunk show in Westport. If not, well, I’ll still be there; I’ll just have an extra accessory, I suppose. Maybe two- it might wind up being my first public wheelchair appearance, which would be a very new thing, and would be very interesting to experience. It isn’t the end of world, certainly- I just don’t like that it’s happening, or that it has to happen right now. (I knew I should have practiced being in my wheelchair more.)

I’m trying to focus on being extra, super- careful with myself for the next few weeks— extra sleep, good nutrition, being kind, all those things. It’s probably not the worst thing in the world- although, to be honest, it gets more than a little dull, at times.

Which reminds me: who has awesome movie recommendations for a girl who will -and really, really should- spend about 5 days couch- bound? I’m not against marathoning really terrific television series, either; I have some serious knitting I’d like to accomplish. Enable me, please? I don’t do well when I’m bored; I tend to get myself into all sorts of trouble. Sam will come home, find banana bread in the oven, something simmering on the stove, and the sitting room tidily re- arranged and I’ll be scolded within an inch of my life. Help?

15 Comments
by Sarah on May 2, 2013  •  Permalink
Posted in Chronic Illness, Disability, Family, Health, Home, MS, Multiple Sclerosis, Pictures, Work

Posted by Sarah on May 2, 2013

http://onmytiptoes.com/2013/05/02/in-which-i-revisit-humility-self-care-and-infusions/

in which I am jumbled and rusty, but I tell it true

basket

Did you ever have so much going on in your life, so much constant motion, that you just felt frozen? Locked up? That’s how it is over here these days. I’ve been digging through my toolbox of comfort behaviors- all my mental health lifesavers- but nothing has been doing the trick. There’s no magical plaster for the amount of sheer madness happening in my life right now. I’ve tried to John Wayne my way through this monster of a year- oh, 2013, you just are not playing around, are you?- and I cannot do it.

I come back to writing because there is nothing left to do.

I’ve come back to documenting this life because there must be no other way out of this.

—————-

There’s too much, just all so, so much. Everything seems so huge, is the thing: there’s so little in my life that seems small right now, and that’s really what I crave: smaller things.

  • Spring, which has always been always a brutal period for me (death: awful anniversaries) is worse than usual, in the usual ways.
  • Kiddo is headed to college. TOO ENORMOUS FOR WORDS. TOO ENORMOUS FOR ALL- CAPS.
  • The business grows in leaps and bounds. No pressure or anything. This is a positive thing, but positive stress still = stress.
  • Opportunity is everywhere. (How to choose the right ones?)
  • Samuel’s mother has been diagnosed with stage IV cancer. I can’t even begin. It’s just too goddamned huge to start on here, and is also more than a bit personal, as in: not really mine to discuss. In brief, though- oh, cancer, you bitch. You terrible, awful, hateful bitch.
  • The travel. Oh, the travel. I love it so much, but this year we stepped it up and it’s rather complicating things. Travel is easy when you don’t have a family member with a potentially life- threatening illness; planning becomes infinitely more fraught when that changes.
  • Family business. Family as in my family, which is odd because I never let my family be a thing. (I expect that’s rather the price I pay for admission, to paraphrase from Mr. Savage.) I have a wedding to attend this autumn, and I want to see these two people married more than anything in the world. Also: I can’t imagine being in a room with people who hate me this much for all the money in the world, so instead I do it out of love. Oh, the things we will do out of the desire to destroy ourselves: I will go and break bread in the same space with the man who tried to kill me, with the mother who invited him over for every holiday after that, with the step- father who always, always kept his silence. I don’t know if I am strong enough to hurt myself in this way. This final degradation was meant to be a wedding present to the sister who always only ever wanted everyone to get along: once, just once, the illusion, served up no matter what it cost me, but I just don’t know.
  • There’s more- isn’t there always?- but this is the bite I thought I could chew today. And so.

—————-

I don’t feel equipped to help Sam handle what he’s been handed. I don’t feel equipped to handle what I’ve been handed. I do feel inspired to open a small set of franchises, though: Silence Rooms, I’d call them. Small booths you can rent by the half hour, sound- proof spaces you can just lock yourself into and scream.

When Sam had his first stroke, I would go to Walter Reed every day. After the first few weeks had passed and we knew he wouldn’t die- but still didn’t know what the damage would be- I needed to be his primary advocate, but I didn’t need to be there overnight. It was a 45- minute drive, but I needed to keep myself together; it’s a freeway run from Baltimore to D.C., so you have to stay on your toes, and of course I wanted to be sharp for the doctors. I’d listen to upbeat music on the way down, see Sam, read his charts, study from the neurology texts Tedra had given me, talk to the doctors, talk to Sam’s roommates, scare the interns, that sort of thing. I’d corner his neurologist in the halls and push for direct “Yes/ No” answers, help new amputees play Wheelchair Jousting after-hours in the back hallways, sneak in better coffee or cigarettes for anyone who asked, and then, when it was time to leave, I’d go out to the parking garage, get in my car, take a deep breath, and just scream. I’d cry, punch my steering wheel, and inevitably, it would always lead to just- plain- old- screaming.

Other visitors would walk out to their cars, and they’d see me, and it always seemed so— natural. Normal. Sometimes I’d be the one who saw them screaming. It wasn’t embarrassing at all- and I hate sharing my private feelings with strangers. It just never seemed like the sort of thing any of us needed to hide; we knew who we were from seeing each other in the halls, or the dining facility, or the smoking corners. Family members know one another; it’s the grey skin, the shaky hand, the burnout eyes. Yes. I see you. This is us. This is how we carry this fucking thing. There was nowhere else to go, no place to take grief and put it. You can’t take it home where your kids be frightened by it, where your neighbors might overhear it. You can’t take it to your friends, who will never understand it and can’t possibly have the capacity to hold all of it. You can’t take it to the chapel-  that’s not a screaming sort of place, and I am not a chapel sort of girl.

There is nowhere to scream. There really should be. I’m here to tell you, darlings: that place would make damned bank. 

—————-

Of course- there is always an “of course” here, and if you made it that far, through all that dreary doom and gloom, the endless whinging, the rending of cloth and gnashing of teeth, all that drama above, you really do deserve some payoff, honestly. And so:

Of course there is something to what they say about growth and change under pressure.

We lean in, and in leaning in to the work of this incredibly trying late winter and spring, we lean into each other. We handle one another with care. We are all sharp edges and tightly wound springs, but we work on bringing out our senses of humor, on looking into our ability to take care of ourselves and each other, on how to be healthy. We look into how to best grow, and we watch out for which nights we need to give up on the idea of growth; sometimes what we need is 6 hours to give in and just marathon the hell out of Downton Abbey, because it is silly and complicated and really, a costumed soap opera and that is 100% okay, damnit, because it makes both of us feel better for an evening. We snuggle our pets. We eat too much comfort food. We talk, when we can, and we don’t when we can’t. We hold hands. I knit. He weaves. We drive, endless long drives to shows, and I read to him. We change. We change as a couple, learning how we manage these things, but that isn’t a bad thing; god, we have had so many hard times, but I’ve never felt they left us worse off as a pair.

I wonder how this will change us, in the end, once we have come through to the clear.

I’m beginning to make up lists of things I’d like to do, once we are in the clear, but I think that’s another entry. (SO MUCH another entry. Oh god. All of the many, many things.)

I know I am still rusty and jumbled today; all my pieces are still so broken lately. I’m too used to speaking my thoughts lately, mostly from the safety of a two- person blanket fort. Give me time.

Be well, Patient Readers. Be kind to someone who is patient with you. Be patient with someone who is kind to you. Hug everyone who will stand still.

33 Comments
by Sarah on April 30, 2013  •  Permalink
Posted in Family, Friends, Health, Home, Simplicity
Tagged , , , ,

Posted by Sarah on April 30, 2013

http://onmytiptoes.com/2013/04/30/in-which-i-am-jumbled-and-rusty-but-i-tell-it-true/

on grief & the work of hands

Penelope the Empathetic Monster, by Dani Robins: an adorable blue stuffed monster toy with green feet and ears

Penelope the Empathetic Monster, by Dani Robins

When something horrible happens, it is natural to feel helpless. Stopped. Frozen. There’s no procedure for dealing with something horrific, no checklist for coping with a tragedy. We become locked in shock and grief.

I find myself restless in the face of horrible things, full of purposeless movement. I fidget, fret, pace: I need a place for all of this energy.

There’s no way to fix this, to mend what went wrong, but I can take my restless energy and apply it to something positive. As I do every time I am sad, or frightened, or in grief, I take up my needles, sit still, and breathe. I knit through it all.

A group of people have gotten together with the goal of knitting and crocheting stuffed comfort creatures for the surviving children of Sandy Hook Elementary School in Newtown, Connecticut. They will be working on knitting and crocheting approximately 600 small creatures over the next few months. It is a small effort, but it is done with love and compassion. In the end, these things are really what we have: this is what heals us as a community and as individuals.

If you are interested in joining us, we would welcome more hands. The work of hands is healing; having something positive to focus on provides some direction for the anger, hurt and grief that so many people are feeling right now. There’s no way we can repair what has happened here, but we can do this one tiny thing: we can sit and work, we can stitch in compassion and love. We can create: this is something we can do. This work in specific will provide a small, sweet gift to a child: a handmade reminder that in a world that can be so very ugly and frightening, there are also strangers who are full of kindness, whimsy and compassion. These things matter- the little things, they count too.

The project is called 600 Monsters Strong For Connecticut, and you can find us on Ravelry. If you are short on yarn, no worries; there’s a yarn donation thread. If you need a pattern for an adorable creature to make, the amazing Rebecca Danger has even offered a discount on some of her patterns for this effort.

Looking for other ways you can help?

You could send notes and cards here:

Sandy Hook Elementary School
12 Dickenson Drive
Sandy Hook, CT 06482

The United Way has started the Sandy Hook School Support Fund to provide help with funeral expenses, counseling and other services. Donations can be sent here:

Sandy Hook Support Fund

℅ Newtown Savings Bank

39 Main St

Newtown, CT 06470

The Sandy Hook Elementary School Victims Relief Fund has raised more than $73,750. The fund will be administered by the school PTA, and will be used to provide counseling to survivors, pay for funeral expenses for victims, create a scholarship fund for the school’s students and fund a memorial. Donations can be sent here:

Newtown Memorial Fund

P.O. Box 596

Botsford, CT 06404

The family of Sandy Hook’s principal, Dawn Hochsprung, created a memorial fund for the educator, who died trying to stop the gunman. Donations can be sent here:

Dawn Lafferty Hochsprung Memorial Fund

CT Teachers Credit Union

P.O. Box 2121

Waterbury, CT 06722

Be well. Be safe, be healthy, stay warm. Hug your children. Tell someone you love them. Forgive a friend. Call your parents. If you have the time, join us in making a cuddly comfort creature for a child. But please, but above all: be well.

Eugene, the Friendly Monster, by Kay-H.

Eugene, the Friendly Monster, by Kay-H.

6 Comments
by Sarah on December 18, 2012  •  Permalink
Posted in Family, Friends, Handmade, Home, Knitting
Tagged , , , , , ,

Posted by Sarah on December 18, 2012

http://onmytiptoes.com/2012/12/18/1612/

on sitting with compassion and loving- kindness

Buddhas at bazaar in Kabul, Afghanistan, by Sarah Eyre, 2008. All rights reserved.

I’ve been spending a lot of time working on metta meditation lately.

Metta is hard, especially for “western” *** students. It involves extending compassion, both in the specific and in general, and while that seems like it would be all puppies and sunshine, it’s really very rough, warrior work. When I would teach metta meditation it was almost inevitable that one of my students would cry, and when I’d speak with them afterward I found that the students who cried in class would almost always be new to the practice. This was natural, and normal, I’d explain: all part of the process. It’s difficult, challenging work, but it feels hardest in those first few sittings: those initial experiences are raw.

I’ve been working with metta for years now, and I still struggle with it. I can be doing just fine with it for weeks, and then hit a wall, going nowhere, fighting with myself. I’ll get up from my session, frustrated and bewildered: why is this so hard today? We aren’t always built for compassion.

The Metta Suttra, translated, reads:

May all beings
be happy and safe,
and may their hearts
be filled with joy.
May all beings live
in security and peace,
whether weak or strong,
large or small,
near or far away,
visible or invisible,
already born
or yet to be born,
May all of them dwell
in perfect tranquillity.

That seems pretty simple, right? Who doesn’t want that? I want that. That’s great. Everyone should live in safety and joy. Hell yeah, I want that. Until it gets specific. I want that, except that guy who cut me off in traffic this afternoon while I was driving with my daughter in the car, he’s a real asshole. I want everyone to be happy and safe, but that woman who made me feel stupid and small at the MVA, what’s her problem? I want all beings to be filled with joy, but politicians are real pricks and they need to start helping people already.

It gets tricky. Anger gets in the way. The monkey mind clouds your vision.

My simplified, beginner’s version of a metta practice is a bit long to read, but it’s really just a matter of repetition.

Metta is a call to compassion. The practitioner is meditating on four simple, universal wishes: to live happily and free of hostility, affliction, or distress. Metta can be performed anywhere- as part of a seated practice, while walking (preferably without a set destination), while engaged in creative work- any space or time can become part of a metta meditation.

To begin, just give yourself a few moments to settle your mind. Focus your attention on experiencing quiet joy and benevolence. Go to your happy place, wherever that is- a room full of puppies, ponycorns, that night when a supercute Somebody smiled at you in a crowded room, whatever it is that fills you up- go there and be with it for a few moments. If distracting thoughts come into your mind, acknowledge them (hi there, I don’t need you right now!), set them aside, and move forward with your practice.

Metta is first offered to yourself. Say the following phrases to yourself at a steady pace, and focus on extending that feeling of joy and peace that you’ve brought up to the subject you’re meditating upon. As you imagine them, picture wrapping them up in that peace and happiness.

May I be safe and protected.
May I be peaceful and happy.
May I be healthy and strong.
May I have ease of well- being, and accept all the conditions of the world.

Continue to recite these phrases in the first person.

Once this is comfortable to you, offer metta to someone you love. Picturing this person in your mind can be helpful.

May ______ be safe and protected.
May ______ be peaceful and happy.
May ______ be healthy and strong.
May ______ have ease of well- being, and accept all the conditions of the world.

Next, start offering metta to someone in your life who is a source of support and kindness. This person might be a mentor, a teacher, or an awesome friend. It can help to imagine this person as you meditate.

May ______ be safe and protected.
May ______ be peaceful and happy.
May ______ be healthy and strong.
May ______ have ease of well- being, and accept all the conditions of the world.

Now that you’ve got a flow going, offer Metta to someone that you neither like nor dislike- someone you know, but don’t really have feelings for either way.

May ______ be safe and protected.
May ______ be peaceful and happy.
May ______ be healthy and strong.
May ______ have ease of well- being, and accept all the conditions of the world.

Next up, you offer metta to someone who has hurt you. This hurt can be large or small: take on what you can handle right now. Picture this person in your mind.

May ______ be safe and protected.
May ______ be peaceful and happy.
May ______ be healthy and strong.
May ______ have ease of well- being, and accept all the conditions of the world.

You close the practice by extending metta to all beings. Some folks like to break this into smaller pieces, such as all adults, all children, people who are happy, people who are unhappy, etc.

May all beings be safe and protected.
May all beings be peaceful and happy.
May all beings be healthy and strong.
May all beings have ease of well- being, and accept all the conditions of the world.

– Okay, that seems like a lot to remember. The pocket version:

  • Self.
  • Someone you love.
  • A friendly acquaintance.
  • A neutral person, someone you neither like nor dislike.
  • A challenging person. This can be hard in the beginning, so start gently.
  • All beings. If you have a lot of time, you can break this into subcategories: all adults, then all children; all beings who are happy, then all beings who are unhappy, etc.

Compassion isn’t easy.

Anger comes more easily, but even in looking at my anger, some days, I can sit and find my answers. I was so angry recently, dealing with the ways in which someone had hurt me, and frustrated with the high road. It isn’t always easy to just walk away. I don’t always want to just walk away. Most days I do well enough just remembering that everything that has happened has led me to this life that I love, which logically means that even the hurts are something to be grateful for: they aren’t awesome, and I don’t want to welcome those folks back into my life, but hey, they brought me here, and here is terrific, so I’ve released them.

On my off days, I’ll have a random thought rise up and spark me into fury, though. I’ll want retribution, justice, answers. Why? I’ll think. Or just: I want to break something. That isn’t productive. It’s actually the direct opposite— it’s straight- up destructive. I’ll pace, and drink coffee, and pace some more, and eventually sit down, and try to clear my mind, and eventually, something will happen.

In this case, it was metta.

The best/worst thing I can hope for those who have harmed me is that they become better people.

Now, let’s be honest here. It began as a vindictive thought- to become a genuinely good person would mean the people who had harmed me would be hurt to see what they have done to me and other people- but as I sat, the thought changed. If what really offended me was that there were people who are doing things that are wrong- and it is- then what I really want is for it to stop. If they became good people, those actions would stop.

This gave me something positive to focus on; a form of forgiveness that is genuine in that it isn’t blind, forgetful, or some version of “Oh, nevermind, I’m SO OVER IT NOW.” It’s a way to set my anger and hurt down but not aside. I can’t make them good people. Wishing that they become good people isn’t going to make them good people, either- this isn’t The Secret, it doesn’t work that way. The only thing this changes is how I personally engage with the world.

This gives me the ability to be kind, to be calm, to be compassionate, to set something reactive like anger to the side and to view the world through more balanced eyes. It keeps me from settling into old resentments and being caught in the trap of useless old emotions: you only get so many days, after all. There are wonderful things in the past, of course, and I don’t want to forget them- and lessons, too- but I don’t want to get caught there. I don’t want to miss the fantastic things that are happening right now, and the practice of loving- kindness- of metta- it helps me be present for the now.

*** I really dislike the word “western”. It always means “American, Canadian, and European”, but honestly, let’s get real: WEST OF WHAT, GUYS? There’s an inherent perception bias in this term that’s based in British Colonialism that drives me batty, but I’m lacking a better word here. Anyone have a suggestion? I’d kill for a substitution.

7 Comments
by Sarah on July 24, 2012  •  Permalink
Posted in Health, Meditation, Pictures, Simplicity, Yoga
Tagged

Posted by Sarah on July 24, 2012

http://onmytiptoes.com/2012/07/24/on-sitting-with-compassion-and-loving-kindness/

a few of my favorite things (I’m back at my lists again, everyone- watch out!)

A list of things I’m currently in love with!

Image

Handpainted stockings, because handmade things are awesome, and stockings are awesome, even though I’m not sure this is quite the weather for it.

Photo by meghannash.

Friendship bracelets: I am suddenly really, really excited about making friendship bracelets again. I think it has something to do with the heat wave; I’m transported back to summer camp, and my best friend Kitten in 7th grade, and the bracelets we made for each other. (I KNOW, middle school nicknames were ridiculous, RIGHT?)

I’m so crap at making these now! I can’t seem to keep them from curling- how did I do that, back in the day? They’re fun, though, and I love them.

Jamie and Hazel!

Girls With Slingshots! This webcomic is updated every weekday, and makes me ridiculously happy. It moves between being absolutely, fall- down silly (a talking, alcoholic cactus? ghost cats?) and dealing with everyday issues, and I love it and its creator, Danielle Corsetto, who you can also follow on Instagram and on Twitter.

Wattsolak Designs released Kraken Knuckles last week, and seriously, this is my favorite pattern of the month, and it’s only the 11th. HOW CUTE ARE THESE? I am dying over here. The fingerless version is adorable but I think I want to make the full- fingers pair, because I am a masochist. I have to say, I’m pretty much in love with everything Wattsolak Designs has made so far, actually. I just purchased the Fightin’ Words mitts, too, which are adorable, dead simple colorwork- next up on my needles.

Finally, the best thing of all- I like to save the best things for last. I was always that girl growing up, actually- the weird one, who saved dessert for last, even when my mom wasn’t there to see. I like the waiting, and while I did have a bit of a wait for this, it was oh so worth every second.

Billy, who was my work partner when I lived and worked in Afghanistan, just had his first child this month. He and his partner, Renee, are overjoyed, and all three of them are doing well. That’s about my favorite thing of all summer, honestly. He had a daughter, her name is Elizabeth, and she is perfect. Is there anything better than babies?

I can’t share photos, because they aren’t mine to share, but I’ll give you this, instead- a little music, a song about a father’s love for his newborn child and his child’s mother. The video isn’t a video, really, just a closeup of strange image, something someone made and popped up on the internet, but anything by the Cloud Cult is lovely and doesn’t require a video, anyway. Enjoy, everybody, and welcome to the world, Elizabeth!

Leave a Comment
by Sarah on July 23, 2012  •  Permalink
Posted in Artisans, Comics, Creativity, Friends, Inspiration, Knitting & Spinning, Music, Sundries
Tagged ,

Posted by Sarah on July 23, 2012

http://onmytiptoes.com/2012/07/23/a-few-of-my-favorite-things-im-back-at-my-lists-again-everyone-watch-out/

« Older Posts
Follow

Get every new post delivered to your Inbox.

Join 1,568 other followers