a smaller life

segments

"We're all terminal," he tells me. For a moment I think it's an incredibly callous thing to say to someone in my position, but the moment passes. There is a comfort in someone, anyone, being honest and direct about these things. We are so rarely honest or direct about these things. It is good to hear the truth, even when the truth isn't new or surprising. 

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We still don't know why this happened to Sam. They have new tests, they say, since the last time this happened. They're running tests on his Factor VIII, which sounds like something out of a Resident Evil movie (but isn't). At first, I wasn't really sure that it mattered why this had happened; if we knew how to stop it from happening again (a life on Coumadin) then I was willing to let go of any why and just get into our old/ new/ current how.

I brought our older dog to the veterinarian's office today. Nothing big, just some shots, the annual inspection. While we were there, a dog that had been through a routine operation that morning died in the middle of the waiting room floor. Most likely a blood clot, a vet tech said. The tech was crying. A blood clot had travelled to the dog's heart, or her lungs, she thought. It seemed to go on forever, but it was only a minute or so. It looked like a seizure, and then she died.

I watched the dog dying and wondered exactly what the difference between this dog and my husband was- outside of all the obvious answers. That, I suppose, is why the why of all this suddenly matters to me. I need someone to tell me that my husband isn't going to surprise us all by dropping dead from another clot, somewhere different, somewhere worse. I need a doctor to prove to me that they are so all over this thing that they even know why it happened, just like you see on TV.

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This isn't going to stop happening. This is our life. Even if it all goes as well as it can possibly go, it changes things, and it changes some things forever. I can spend some small amount of time grieving for the life we had in mind, but then we get back to mantra # 1: we only get so many days. I don't want to waste too much time on things that don't matter. I could be here now, in the life we have, and that is a lot more productive and worthwhile than fussing over the life we had planned.

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I am suddenly hyper- aware of all of our things. I want to have so much less. A summer purge. I know it is tied to all of this, but I don't begin to know how.

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This entry seems like disjointed bits and pieces, but it isn't. I know it isn't.

and more waiting

It's been a series of ups and downs; first Sam was doing well, then not- so- well, then well again. We're still in what I'm coming to think of as "the well zone" and I'm cautiously optimistic; the doctors have pushed back when they think he'll come home, but they think he's out of danger, which is what matters.

The clot is still taking up space in his head, and it will be for weeks, months- possibly years- as the Coumadin chips away at it. If this goes anything like last time, I think it will probably be another year until the passages in his head are clear, but again, I'm okay with that. He'll be on Coumadin for the rest of his life, and that's not great, but it's better than the other option: likely death.

If his INR (a test of how his blood clots) continues to climb and the pressure in his head stays the same- or, even better, lessens- he  could be home with us as soon as Monday afternoon. No promises, they tell us. I'm not counting on Monday- I've been here before, and it never is as quick as they think it might be- but that would be nice. When he comes home he'll still be weak, and his headaches will take weeks to resolve, but at least he will be home.

Really, though, I don't care. The only thing that matters tonight is that he's pretty much in the clear: things aren't getting worse, and it looks like there was relatively little impact. So he's alive and intact. What's more important than that?

the waiting game

 

Still no real answers from Sam's doctors. There's a lot of talk about how rare this is, and a lot of interns coming in to peer at him- baby doctors, is what I call them in my head. They're cute, all inquisitively asking the same questions, all confusion and wonder. They look at my husband as though he is some privilege they receive, this statistical, diagnostic wonder. And I suppose he is, and I'm grateful they get the chance.

The waiting, though, is interminable. They can't seem to lower the pressure in his head at all; it isn't climbing, but it isn't going down, and we're at about the end of what pharmaceuticals can manage. The next step would be a spinal tap- more of a drain, the word "tap" used the way you'd tap a maple tree. I hope we don't get there, but at least that's an option before all the talk of stents and shunts.

So that's where we are. Waiting. Hoping. Crossing everything. Knitting, incessantly, that too. But mostly just waiting. I'm getting better at that.

 

Monday's list of very good things, even better

 

Broken out here, as ever. Holding the page down is my new flask. I wish you could see it better- it has a giant squid on it. A giant squid! Giant! Squid! You can see another like it here. I love it.

Speaking of love: Sam and I went to meet with his vascular neurologist this afternoon. We've been waiting for this appointment for about four years now, I think. It's an immense relief to be able to say that finally, finally, finally, he has a clean bill of health. The doctors have declared him healthy- no more clot, no major vascular or clotting disorders, and no more Coumadin.

That's all I really have to say, today: the best thing that has happened in 4 years happened today.

 

dogs and lists and positive thinking

 

 

Oh, I am so behind this week. Behind on everything, from my LoVGT (List of Very Good Things) to my laundry to a class I'm supposed to be taking online, late on finishing everything, late on starting anything I'd planned this week. Agh.

I'm making new lists of things to do- and simplifying them, this time. Trying to carefully determine how much can and should go into a day.

Speaking of lists: my very, very late list of things that are good:

 

 

 (Broken out on Flickr, like always.)

There is a lot going on right now- changes to the house, changes in routine and ritual, classes, yoga (I signed up for a set of classes at a very nearby studio, so excited), puppies to train.

Wait, did I say puppies? I meant puppy. This puppy, and to hell with self- restraint.

 

The camera use around the dogs is constant and epic. I keep trying to photograph the two of them playing together, but they're too fast and it all comes out as a blur. I did managed to catch one of poor Lilu after a play session, though.

 

 

  

(What's that line about sleeping dogs?) The longer we have a puppy, the more I come to realize that Lilu is older than I'd really thought about. She's about seven years old, which is about middle aged for a Rottweiler, even a tiny one like our girl. She's incredibly patient about Hugo crawling all over her and chewing on her face, but he wears her right out. Just looking at her trying to keep up with him wears me out.

I try to be sweet to her, and take her on walks, and be patient when she insists on tearing up my new door trying to eat the mailman or the milkman or the UPS man or, well, anyone how doesn't live or work here. You only get so many days. I think about that a lot- about the amount of days/ hours/ minutes we get, and how we never really know what that number is, and how that's probably a kindness. If I knew how many hours I had, I'd probably spend 15 minutes calculating how many I'd spent in a job I loathed and then I'd spend at least another 45 minutes being angry about it. Possibly more.

That's one of the nice things about MS. There aren't many, but this is one of them: I'm constantly aware that things could be very different for me, that they might end up very different for me. It might be sudden, or it might creep up on me, or it might not even happen at all. All that uncertainty, especially after a full year of uncertainty- helps me stay closer to the moment. Things are good; I should focus on those things, and how good they are. Next year I might not be able to have sore knees from running. I probably will, but who knows? There's no use eating up my minutes/ hours/ days worrying about that, but I'm definitely more conscious and careful to enjoy things. I used to let so much pass me by. It's nicer this way.

observations

I'm learning all of these tricks lately- getting some ideas as to how to manage the entire MS mess- so many things to watch, to lose, to monitor, all the accessories and accoutrements, finding and refining my routines.

I'm a creature of habit. I do well with change within the change itself, but if you tell me change is coming I'll dread it, and after the change has arrived and I've made it through the heat of the moment I am immediately looking for my new patterns. It's part of an obsessive nature (my obsessive nature); I am always looking for ways to more perfectly line up all my shoes, and the chaos of major change is a prime opportunity for that sort of thing.

Setting new habits is a process which starts out with looking like no process at all: I watch, and notice, and note. I move something, watch some more, move it again: it begins looking like like a complete mess, but I try to form my patterns around problems instead of forcing everything into a rigid, preplanned structure that might turn out to be useless. Most of the process is relaly just in observation.

Some things I've observed recently:

• Fatigue is not weakness, it is a medical condition and the only cure is rest. Also, related: fatigue does not play fair in Feats Of Strength.
• If you wouldn't eat somewhere, taking pills there is unhygenic and there is NO WAY I'm doing a shot there.
• People say stupid things because they don't know better. It is usually not their fault. This does not mean I have to put up with it.
• Going into my bedroom and seeing all my drugs laid out on my dresser makes me feel like an invalid, and that makes me pretty damned crazy- pants.
• I hate anyone watching me inject. I wouldn't mind teaching someone how to take a sub- cut shot, but otherwise, can I have a little privacy, please?
• It is not silly to have frilly accessories to drugs. Taking my pills out of my little bluebird dish makes me happy.
• If I want to call it "shooting up," I will and you, Mr. -Shared- Solutions- guy- who- doesn't- take- injectable- medication, you can quit that lecture RIGHT. NOW. I'll call it "riding the goddamned ferris wheel" if I want to, because while it may not be pretty, it is all mine. Stop fucking calling me if you don't appreciate my language; I certainly do not appreciate yours.
• I do not have to be pleasant because I am sick. I will try to play nice with others, but it's okay to have cranky days, and if people are unpleasant they'll get the appropriate response.
• Cats and cakes make everything better. If cats fail, go for the mixer, which is a long way of saying try cats first, then cakes.

in which I'm still getting it straight

 

 

 

I screwed up. I got sloppy with my pills over the last week and I'm feeling like hell today. I can't even fake it over the phone; Gryphon called me on it right away, despite my protests. Ach. I hate when I can't fake it.

So today is a bad day, but it's an informative one, at least. I'm religious about my shots - and I need to get smarter about my pills. There are a lot of them, but it's not unmanageable; the only this prohibiting me from getting this right is laziness, and I can't afford to be lazy. Today has been a pretty decent reminder of why I have those pills- today I'm learning how much I need them.

I'm still figuring it all out. People keep telling me they know someone else with MS, that I should talk to them, and I always almost take them up on it... and then I don't. I could use a mentor, or something, someone like that, but how do you begin that conversation? What do you say? "Hi, my name is Sarah, I have lesions. How are your lesions?"

I don't know. 

A few days ago I was in a diner restroom and met a woman with a completely badass walker. It carried things in a basket, like a kid's bike, and you could turn it into a chair. It was glittery and purple, exactly like my bike as a kid, actually- all it needed was tassels on the handrests. I asked her about it- it was a cane day, which made it easier.

It was awesome, actually. She had MS, too. She told me about making the insurance companies pay for things like canes, and walkers (even awesome ones!), and about making the transition from canes to walkers to wheelchairs (she is usually in a wheelchair). She was cheerful and sweet and overall just made me feel better without even trying.

For now, I'm on my own, with all my plans. Plans such as: quit smoking (I don't want to get into it, but I'm doing all right on this one), eat as well as I can, yoga, meditation. Taking my pills on time. And running. I felt good enough for running this week, if not for the snow. I hope I can get back to that whenever Baltimore gets around to plowing my neighborhood. I guess that means I have until about June. Oh, Baltimore.

 

in which there are apologies and plans

 

 

"Do not hurry, do not rest." -Johann Goethe

I've struggled over how to begin this post for a few days now. Everything sounds too dramatic, too big, too much. I'm tired of too much. I want simple words for simple things.

I've been sick- allergies, steroids, then a MS relapse related to the allergies, rinse and repeat. To be straight about it: January sucked and I'm glad it's over. I spent a lot of the month in bed reading Charlotte Bronte and ordering skirts on Etsy. Okay, the Bronte and skirts bit was all right, but the rest of it was pretty suck.

I'm coming to understand and accept that this Being Sick shtick is going to be a part of my life, and that I need to get okay with it. I'm still working on the acceptance bit- I have a tendency to waste a lot of energy being mad, or rebelling against my traitorous body- but I work at it. I'm learning to spend my energy carefully, as though there were a limited supply, because some days that might be the case. I'm learning to go steady but slow- to listen to Goethe, because heaven knows I'm no good at listening to my body just yet-learning to single- task, to slow down and pay attention. I'm even taking a crack at meditating, but that's another post altogether.

On the other hand- in the Things That Are Good column- I seem to finally have gotten over the dread "Copaxone hump"- I've gotten accustomed to giving myself shots, and it looks like my body has finally gotten used to the drug itself. No more baseball- sized welts, no more itching, no more accidentally wasting a dose by injecting the air. Best of all, no more of that creeping, burning sensation for half and hour afterwards- a sting, some warmth, but it's all so minor now. It got worse before it got better, but I'm glad I stuck with it.

Also a positive: all of those hours laid up left me with time to make lists and plans. I've been thinking out how to re- organize this blog into something more coherent- something I've struggled with since returning from Afghanistan. I didn't get any knitting done, but I've written pages and pages of plans for my life, our house, my body, and this blog. I'm rich in plans, I tell you. Filthy, filthy rich.

I'm also rich in comfort lists: scribbled into my black book are long rambling lists of random things that make me happy. I don't remember writing some of them, but I should dedicate a weekly post to these lists- re-reading them makes me feel warm all over, even without the mega- doses of benadryl, etc. To be honest, there's something about spending a day (or three weeks, whatever) in bed with your paper diary, some good books and lots of pencils, stoned out of your mind on legal, prescribed substances. I mean, I'm not advocating it, necessarily, but I definitely had some sort of quiet creative breakthrough last month, and that's another positive.

My inner critic is beginning to rear her head and snort at so much positive thinking. If I don't leave this soon she'll start muttering about my Pollyanna complex.

The teal deer version: I'm so sorry I let this sit for over a month. I was sick, but I'm feeling better now. I have plans. It's not all bad. More later.

 

catching up

 

I know, I know. I don't write, I don't call. The truth is, I've been so absolutely wiped out lately- there is so much going on (so much to write about!) and I've been struggling with my health- a bad mix if there ever was one. I take my pills and my shots like a good girl, but only recently have I begun to feel what seems like the beginnings of improvement- and I say that with great reservations, as it's only the last two days or so that really seemed better.

We opened the new studio, Sam and I are playing with the idea of (finally!) demolishing the kitchen, dyeing has stepped up at least two- fold (if not three- fold), my daughter is a full- blown teenager with a boyfriend, I'm still not driving which leaves me feeling a little claustrophobic, and I'm suddenly feeling just how responsible Gryphon and I are to at least nine other people, not to mention our customers and oh, yes, of course- our own families. There doesn't seem like there is too much room in there for me to be sick, which is the way I traditionally approach any sort of physical infirmity- placing it firmly on the back burner with a stern I'm sorry, I just don't have time for this right now.

It turns out, I don't get that option. MS turns out to be a prima donna of sicknesses; if I'm not paying attention to my body's cues, she'll step right up center stage and remind me exactly who is in charge here. We're learning how to live together, and I'm quietly plotting my revenge with my nightly shots and what seems like fistfulls of pills, because no matter what this disease thinks, damnit, I'm the one in charge here. I'm determined to subjugate this in some way, to regain control over my body and my time.

Learning to take a proactive stance on my health- on realigning how I live, focusing on the right fuel and rest and exercise and staying informed and not just blowing this whole thing off as another thing that will go away- that's new, and it eats up more of my resources, too, but I'm learning, and trying. 

In the meantime, I knit- nothing that I can show, all holiday knitting, but it's happening- mittens and shawls and socks, as well as the world's most boring project of all time- a six- foot tube scarf in stockinette for Kiddo with her own handdyed yarn. It's a labor of love, to be sure; God knows I'm not knitting this because it is interesting in any way- but I know she'll adore it. 

So I'm here, intact, although some days it really does feel like "intact" is all I can manage. I have some designs cooking in all that holiday knitting, including a lovely pair of colorwork mittens in both Skinny Bugga and Djinni Sock as part of a collaboration with the ever- lovely Kate of Dragonfly Fibers. I'm focusing on getting well, and working hard, and all the sweet bits in the details of life, the stuff that really matters- the kindnesses of friends, my daughter's smile, my husband's hands, good food, crisp mornings, flannel sheets, cats, reading Sherlock Holmes stories in bed, strong morning runs, apple cider and milkmen and hot coffee.

In the end, that's all that really counts, right? The small moments, they're all we have.

in which, for just a moment, I get real

       

I’ve had a good amount of people ask me how I’m doing, lately. It’s a pretty common question-  we say it in some form to just about everyone we see, every day. I have a policy about lying, even little lies; I’ll evade like mad, and I’m an old pro at diversions, but I don’t like to lie. That turns this average, simple question into a real stumper most days. I know that it’s all form- that very few people are really asking how things are. It’s an opening gambit, not an invitation to get into the real muck of one’s daily life. I know that. But saying, oh, I’m fine, or worse, we’re great- it sticks in my mouth, every time, because it’s a lie.

I mostly choose diversion. When confronted with the question, I’ll bypass it altogether and go straight to weather. It sounds something like this- Q: “Hi! How are you?” A-“It’s another beautiful day.” “Happy to be here,” is also a good answer, but that only works if I am somewhere, and never on the phone. It is a lot less awkward in real life than it reads on the page, but it still makes me feel horribly socially stunted. I have a horror of over- disclosure (she says in her BLOG, I know, the irony) and I’m convinced that I’ll just blurt out the truth if I’m not hyper-vigilant.

Which is funny, really, because I have the hardest damned time telling anyone. I’ve tried to rely on the blog to do the dirty work for me, but I’m well aware it’s a coward’s way out.  I’ve had several phone conversations where I just chicken out- I can feel it happening, like a slow- motion fall from my intentions into mediocre small talk. So if I’ve called you recently and the conversation was shapeless, rambling and insufferably inane, I’m sorry.  I still haven’t managed to tell my daughter, despite having decided I’d do so six days ago; I just freeze up inside at the idea.

The real answer to how I’m doing is that I am doing. That’s it, just doing. I press forward, because motion makes me feel like everything is still humming along, unchanged. I have some rough days- days when nothing I write or type comes out right, when the words just don’t come, when my hands fail me, when I feel shaky and unsteady, when I am confused and lost, when my head just pounds, when I pretty much live in bed and wait for it to pass. More often, though, I have days where it’s all so minor- just a memory of the bad days, really- that I can pretend it’s not really happening until I have to stop and take a pill.

I still don’t know what this means- if it means anything- to me. I don’t know how I feel about any of it. I know I can’t stick my head in the sand and make it all go away- as comforting as that might be. I know I have to get proactive- run more, eat better, sleep right, make good choices- and I know I need to start that right now, although I’m having problems getting started. Tomorrow, I think, every day.

I am trying to ground myself in the small moments of my life- because that really is all that there is, the small moments one after another- instead of getting mired in the scary unknowns of the bigger picture. I fail, but I keep trying. That’s the one thing I’ve ever truly excelled at, really: trying.

(Today's post brought to you by Samuel Beckett, the genius behind one of my favorite quotes: "Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.")