Paul Kalanithi. And Jason.
Thursday August 09th 2018, 10:39 pm
Filed under: Crohn's flare,Friends,Life,Lupus

A book or the baby blanket project…

“When Breath Becomes Air” won. Written by Paul Kalanithi, whom I first stumbled across in a New York Times article. He trained as a neurosurgeon at Stanford alongside our friend Jason, which I knew was going to make the book feel very personal. I watched Jason’s family go through that hard long slog; when Jason’s training was finally over, he took a job in upstate New York and his wife Sheryl, who loved to garden and did what she could while living in a rental here, gifted me with several large flower pots when they left. I have raspberries in one and a squirrel-surprise fig seedling in another to remember them by.

When Kalanithi wrote of going out with his wife to a great barbecue place, I thought, I just bet you that was Armadillo Willy’s. California does not do barbecue like the South does but that’s the one place I know of that tries.

Kalanithi wrote about what it’s like to be diagnosed with stage four lung cancer at 36 when you’re so close to achieving all that you’d hoped and worked towards but then life flips the tables over and everything spills off.

I remember Jason coming into church once, which was always notable because during those residency years he so often couldn’t take the time off to. He looked down, and it could have been just the endless hours of it all–and yet.

So I asked him.

And he, knowing that I knew the inside of Stanford Hospital well, just spilled: he’d had a patient, a lovely woman, cheerful, happy, healthy all her life, (and it was clear he really admired her and loved her) and all the sudden there she was needing brain surgery and bam just like that despite all his training, despite all his years of preparation to be able to help other people in moments like this, there was suddenly no more they could do and to his great surprise she was gone. Gone. How. It had just happened and he hadn’t had time to process it yet. He wasn’t sure right then that he could process it–it just didn’t compute. Sixty years old–so young.

Looking at this love of a human being himself, my reaction surprised him. I was in my early fifties, so an endpoint that seemed so close to him in his thirties was a lot closer to me. But still, I was going, Sixty. She made it to sixty in good health. How would it be! I marveled rather than ached, and told him, That’s really cool, I’m so happy for her. I’m sorry she’s gone but I’m glad she had such a good life!

I was picturing all the things one could do if, say, one could be a normal person who could be out in the sun. No lupus. No Crohn’s. You could travel. You could go to the beach and not just right at sundown. You could play with your grandkids on the grass at noon, you could celebrate in any way and at any time you wanted and the fact that she was such a good person while living that life… And then blink and it’s over and you don’t even have to do much of the suffering part in between.

To have that reaction out of someone so close to his patient’s age–that was exactly what Jason had needed. The gratitude. And towards him, too, for having been there for her when she’d so needed him. It turned it around for him completely. He had done his best and he had been there for her and what he could do and be had been enough.

I think both of us will never forget that moment.

Today, at long last, I read his friend Paul’s posthumously published, beautiful, heartbreaking book, a love letter to the daughter he would never get to see grow up, and wished Jason and Sheryl were still here to talk about it with. About their friend.

But life changes and people move on.

This I know: we will see each other again.



Who? Beads me
Monday May 21st 2018, 11:00 pm
Filed under: Crohn's flare,Knitting a Gift,Life,Lupus

Well, that was a surprise.

I got a lovely note today and had no idea who this person was; I had to scroll down through the email chain, trying to figure it out.

Two years ago a friend had given me a big bag of craft supplies she wasn’t interested in anymore, nor was I, but I told her I could post it on Freecycle.org so that she could know it would go to someone who would be glad to have it. There were quite a few beads in there and someone could have the fun she’d hoped for when she’d bought it.

And so I did that.

I’d long since forgotten all about it.

The note was from the woman who had gotten that bag. She was no longer a medical student here but now in residency at the same school where my brother-in-law did his. Cool. But I remember the descriptions of what it was like to be in training as a young physician and the severe lack of personal time it entailed and I’m not surprised it took that long for her to really search that bag.

But yes, she had held onto those craft supplies while moving halfway across the country to her new place.

And only then did she discover that, by her description it sounds like I gifted her with a cowl along with a note that meant a great deal to her, whatever I said. She is studying the specialty of one of my favorite doctors, and if I didn’t then I did today, telling her what a difference he’d made to me and wishing her well in her life. She was very touched (and here I was, reiterating that message, I’m sure.)

I don’t remember doing that. But I know I would be doing exactly the same thing all over again if given the chance–with a plain-vanilla-wearable-by-anyone cowl at the ready, or any one that just felt right. Because one of my doctors–and because of Rachel Remen’s stories on the subject–taught me what a difference it can make to a physician to know that there really are patients out there who appreciate what you go through as you aspire to do right by humanity, the whole reason you went through all that you went through to get to the point where you could offer of yourself and your life like that.

That they’re not forgotten when the medical crisis is past.

I wonder if maybe, just maybe, two years ago wasn’t when she needed to hear that message: maybe today was. I have watched life dance to the choreography of G_d enough times…

Knitting is love made tangible. Even if I wasn’t ever her patient, I know well the life of a patient. And I know it’s not always easy to be a doctor.

I’d better get to it on the next cowl to have it ready to send out into the world.



A brief interruption
Sunday January 07th 2018, 11:54 pm
Filed under: Crohn's flare,Food,Knitting a Gift,Wildlife

Quite to my surprise, my stomach demanded a divorce from dinner. Richard is utterly unaffected. Maybe it was (hopefully it’s only) the recalled romaine lettuce? It arrived in a produce box, overnighted in the fridge, but all I ever did with it after that was I threw it away after I read the recall alert and quickly washed my hands.

I think I just need a good night’s sleep. I’ll tell you the cowl story tomorrow. It’s a happy one.

Oh and–there was a new chunk out of the pumpkin too big to be from a squirrel.

The skunk smell was stronger inside than outside this morning (I really should not have opened that door) and the car got it, too. It probably took cover under there afterwards.



The Arroyo
Monday October 16th 2017, 9:29 pm
Filed under: Crohn's flare,Knitting a Gift

Right when I first started, there was the occasional black stitch in the yarn: a tiny smudge of dye overload, as if bits of darkened ash to show where this project was coming from.

And yet the further along I go the brighter the colorway gets and the parts that remind one of the recipient’s burned-out landscape fade isolated into the background. Nothing has changed, they’re still there, but now you have to look back to see them. I like that.

I didn’t push to finish that cowl tonight because it’s a one-needle project that’s easy to carry around and I’ve got that delayed and long-waited-for GI doctor appointment tomorrow to take it to. I have another that takes two circs to work with, that takes a moment to untangle the tips and yarn every time I get it out and it’s gently boring in plain cream, so, hey. The show-off Anniversario waits for the morning.

(Whatever it takes to get me to finish the less interesting one. Its recipient needs it, too. She just doesn’t know it yet.)



October skies
Tuesday October 10th 2017, 10:47 pm
Filed under: Crohn's flare,History,Knitting a Gift,Life,Wildlife

We are about 75 miles south of the fires raging in California’s wine country, with San Pablo Bay as a large break of water between here and there.

But the firesky sunset was intense and the clear awning over the patio glowed a deep, unfamiliar bright yellow that was both novel and startling and I could only pray for the people who went to bed in a calm night and woke up to walls of flames coming right at them, neighborhood after neighborhood. Would I have the presence of mind to grab for my hearing aids and glasses before I ran?

It is smoky and thick and smells like burning plastic outside.

Yonder Cooper’s has a tail feather coming in in the center. Like its daddy, when I needed it, there it was and it let me enjoy its presence for several minutes. It is new at that, though, and I am mindful of its skitteriness. Then it lifted to the fence and stayed a bit longer but flinched that the camera had come out while its back was turned.

The second photo was taken trying to capture it taking off. Crouch, wings out, leap! Faster than a speeding iPhone 4S!

Re the Crohn’s, today was definitely going in the right direction. Grateful for that and hoping hard.

The candy-cane-plied red and faintest beige yarn came out looking more brown the further you get from it (and when it’s wet. Which it is here.)

And… The smoke alarm just went off. Oh fun. That doesn’t mean the air is that bad…?

Six smoke alarms and a bit of teamwork later, we have new batteries and we have peace and quiet and we have a definite appreciation for how good we have it that they were not actually telling us to grab whatever we could and run.

 



Hanks a bunch
Monday October 09th 2017, 10:46 pm
Filed under: Crohn's flare,Knit,Life

Crohn’s flares: food becomes hard to digest and you don’t much want to eat anyway (so you try to at least make everything you do eat super-duper healthy.) Yeah, been through this before. And one of the things that happens is your muscle tone vanishes, just vanishes, faster than makes any sense.

Not this time. Not if I could do something about it, I told him last night: and so, treadmill, yes, and I was going to wind up yarn in the morning.

And that is how this 420 gram cone finally got turned into a hank. (Oops, broke a tie there. No, two. It is big.) It’s about two thousand yards and my niddy-noddy holds two at each go-round. Somehow, thankfully, it did not pop off the thing and fall into a million tangles on the floor. (You know, Alison, you really could break the yarn and make it into two or more if you weren’t trying so hard to prove you didn’t have to.)

It is scoured, as pre-shrunk as I could make it, and I may have to take a hair dryer to it. All the better to strengthen those arms with.



The Stitches stash slowly winds its way down. Only the best yarns.
Sunday October 08th 2017, 10:27 pm
Filed under: Crohn's flare,Friends,Knitting a Gift,Life

Those needles I freed up? They had a new project going on them and it probably would have been for the woman sitting behind me–if it had been finished.  I’d rather offer her a choice of more than one color if the one I’m presuming about is not ready to hand right over, so I didn’t say anything to her quite yet.

Three other cowls went to old friends who showed up in town for the weekend, while they were there and I could.  And you know what? It’s really hard to be mopey about what a bad night you had because of the stupid Crohn’s when friends are being totally joyful all around you like that. Hey you guys. That was great. Thank you so much.

I went right home and worked on that new project, picturing all the way the smiles on the friends who already got theirs. They were paying it forward and they didn’t even know it.



So I’d better get knitting just in case (like that’s any different)
Thursday October 05th 2017, 10:06 pm
Filed under: Crohn's flare,Family,Life

The GI doctor could see me today or in ten days but not in between. I should have called Richard from work for a ride but it just didn’t feel imperative and I didn’t.

I spent too much of the night kicked awake, remembering all the times…hoping this would be nothing.

Let’s not. Let’s just really not. (Was it 17 projects, I think was the number, tumbling out of that grocery sack with a list of people I hadn’t found yet but I knew he could, and the surgeon exclaiming, I get to play Santa Claus?! He thought that was so cool.)

A week from Monday hopefully my good doctor and I will have a laugh and a phew! together and that will be that.



Come together
Sunday August 28th 2016, 11:14 pm
Filed under: Crohn's flare,Friends,Life,Lupus

One might think, in these days of social media, that one might never lose track of an old friend. But I did after she moved away a few years ago. She’s a nurse, so over the years she’s understood better than most what some of the medical stuff I’ve gone through has been like and she knows she can tell me about her own.

To my great delight and surprise she was back visiting today and we were passing in a hallway before church started, finding ourselves suddenly together with time and in a spot that was mostly alone to chat in for a moment.

I asked her about that transplant list.

She so loved being able to tell me this: she’s not on it now. They’d tried something new, her lungs had plateaued, and she wasn’t needing to replace them. (There’s always the subtext of, for now, and we both knew it, but when you get good news you revel in it for every possible day you’ve got it. It was an understood thing.) She mentioned a few ridiculously strenuous activities that she wasn’t planning on doing anytime soon, but hey!

I tell you. I went into that church meeting just really, really, really happy.

Then later in the day I headed out the door not to buy, it being our Sabbath, not to make others work for me, but simply to be present. I’d gone in yesterday to buy that one last souvenir skein already.

Purlescence was throwing itself a going-away party. I figured sharing the love was what the day was all about and that there would be a lot of it there, and oh, was there. So many people I haven’t seen in so long–we all wanted to see each other and share the experience, that community in that place one last time. The friendships will last, it’s the meetups that will be harder to come by.

It was good. It was sad. It was wonderful–because it means Kaye and Sandi will now have time to do all that creating that they’ve been teaching so many other people to do for these last ten years. It’s their turn.

And I thanked them yet again for that big basket that had showed up on our doorstep seven years ago filled with cards and best wishes and get-well gifts when I was so very very ill. A lot of people had pitched in on it. I’d felt I had to live to use that buffalo yarn they’d surprised me with just to justify their doing such a thing, if nothing else.

And so I did.



Tuck and Patti
Saturday August 20th 2016, 10:17 pm
Filed under: Crohn's flare,Family,Friends,Knit,Life,Lupus

That blouse I ordered last year turned out to be a little bright for me but I never sent it back, and this morning, somehow that turquoise-blue seemed just the thing. I had reasons for wearing something else but it just announced it was it and it was just plain bossier about it than I was. Eh, okay, then, no biggy. (One of those moments you notice after the fact when it all comes together.)

A few days ago, an ad in the local paper caught Michelle’s eye when I was pointing something altogether different on that page to her: she saw not the planning commission story but the small-box notice from the city that the last of the free concerts in the park for the summer was going to be Tuck and Patti. She couldn’t go, but she definitely thought we should.

And we definitely agreed. It would start almost late enough for the UV not to be an issue, too.

And then I forgot all about it.

We got home from grocery shopping and Richard asked, What time does that start? Do you still want to go?

I would have missed it entirely. I’d forgotten. We should eat dinner…

No, said he, if we want to sit somewhere decent we should run.

Okay, good thing we had ice cream at Smitten on the way home, it would have to hold us.

It was going to be closer to the Bay than we are and it always cools down a lot at night in this area anyway–I delayed us a moment while I went searching for a cowl that matched that blouse. I was sure I had one.

I did, some hand-dyed Colinette silk bought at Purlescence. Pretty stuff, if a bit bright for me; one of those yarns that leaps out at you and says it will be the most perfect thing for…someone… I always thought it would look better on someone larger and darker than me, and pulling it out of its ziploc this evening I found I’d never even woven the ends in. It had never been worn. Richard waited patiently while I did a quick job of that. (Photo of one of the snipped-off pieces.) And then while I grabbed a heavy sweater. He’s a good one.

I always come away from listening to their music wanting to be a better person and we own I think all of their albums. I’d seen them once before, when they played on the plaza at City Hall to thank the town for getting their career started, and at the end that day, when the crowd had thinned and mostly gone, Tuck asked me, clearly sure he did, Where do I know you from?

Around town, is all we could guess.

But it left me feeling a bit of a connection to the both of them.

Loved loved loved hearing them tonight. They went off the stage setup to the back at the end and I was surprised that there were some people wanting to take their picture or say hi but the crowd wasn’t entirely swamping them yet.

I’d already been thinking I needed to say it in as few words as possible so as not to hog their time. The experimental med that could have killed me on the spot, having no real choice–and yet. I had.

Seeing that I wanted to say something, those closest to me gave way and nodded me forward.

I took off that long cowl and said to Patti: “I knitted this silk. I was in the hospital thirteen years ago trying really hard not to die. Your words, ‘I won’t give up, my path is clear’ were part of my soundtrack. Thirteen years!” as we hugged each other.

She took my hands in hers and asked me, her face full of emotion, “And what was your name?”

“Alison Hyde.”

And Patti? If you see this and that’s not your favorite color combination, tell me what color you’d most like and it will come to be.



Five filled in, nine left
Sunday August 07th 2016, 11:38 pm
Filed under: Crohn's flare,Family,Friends,Life,Lupus

IRhythm, it turns out, has nothing to do with music.

Me, Tuesday evening: So it’s really cool, see, the new ones, you don’t have to have a landline to phone in the results every night and there are no wires or anything! (Having done this twice before in 25 years.)

Richard: That means memory has improved and gotten cheaper.

Me: Not to mention the rest of the technology. (Wondering if this was my friend Alan’s startup, it being his kind of thing. Silicon Valley can be a small place.)

I said to the tech at the time, Tell me, how does it stay on for two weeks? I have to change my stoma barrier for my ileostomy every three days or it starts to give way. Granted, it’s got digestive enzymes coming at it all the time, but still, three days vs. two weeks? Doesn’t the skin shed it by that point?

It should hold, he answered. If an orange light comes on that means it’s not right against the skin and if that happens we need you to tape it on. Do you have anything that would hold it well…?

Uh yeah I’ve got some old stoma barrier stuff I can cut up no problem there.

They saw that pulmonic heart valve being officially “moderately” antsy on an EKG once years ago. The next time they EKG’d it it was fine. I’ve had a right-bundle-branch block, I’ve had it almost disappear while I was on an anti-tumor necrosis factor med. Lupus is ever the hit-and-run disease.

To back up a bit: I had a longstanding routine appointment Monday with the cardiologist and a cardiac cough episode that happened on cue the day before got his interest. “You haven’t had that for awhile, have you? You go sometimes six months without an episode.” (Meaning, you and I both know how hard it is to catch this in the act.)

Yeah, I do usually get a bit of it in the summertime though because there’s always a little more UV exposure no matter how careful I am.

Then he said all these soothing and comforting things about how it wouldn’t damage my heart.

And then he ordered the heart monitor, which was installed the next day after the insurance agreed. It came with a booklet to make notations in about when, much how, and how long and I was assured it was okay to write down more than what it had room for if I had too many incidents.

Oh goody.

Five days. No orange light yet.

But again, this is all same-old same-old and I’ve debated saying anything here at all. Till I realized that the next time I have to go on the latest and great in heart monitors I’ll want to look up when the previous time was. So you’re stuck with this. Sorry about that.



Not for my grandkids to walk through you don’t. Out!
Tuesday March 01st 2016, 10:18 pm
Filed under: Crohn's flare,Family,Garden,Life

Rain is coming, nine days of it, after a mostly-dry February. Hallelujah.

Which also means that since I was feeling a lot better and the time was very short, I spent about two hours yesterday yanking out hundreds of weeds by the roots before that water lets them re-anchor. Before, the plants weren’t big enough to reliably pull clear to the taproot, the leaves would just tear off. I’d tried.

Okay, the answer to that is to use a trowel but that’s harder on my knitting hands.

I got the huge yard-trimmings bin half full and snapped this photo before calling it a night. I’d made decent progress, at least.

And then I spent today feverish and achy and mostly asleep and I just barely managed to get fluids down–the Crohn’s wanted in on the fun. Speaking of which, if the MAP vaccine currently in trial succeeds I am going to be first in line the first day and it would be SO cool to have a cure!

Anyway, re the germ relapse, I totally earned it but I’m still glad I got those weeds out. Some had already started to grow their stabby Hades heels.



Thank you Mosaic Moon
Monday February 22nd 2016, 11:36 pm
Filed under: Crohn's flare,Food,Garden,LYS

One other Stitches story: I looked down at the basket at the front of my scooter Saturday afternoon and was stunned to find a four-inch knitted square in soft purple merino finished with a little crocheted hanging loop. Oh goodness!

I wheeled straight back to Mosaic Moon with the deepest apologies for my inadvertent thievery, saying it had to have either been from them or one other booth. (I hoped?!)

The guy laughed off my worries, affirmed it was theirs, and was just plain glad to see me again because that’s the kind of person he is. I was impressed. And deeply relieved it had found its way home and no harm was done. He definitely deserved a shout-out, and Mosaic Moon’s yarns are gorgeous and soft and I spent a lot of time oohing and aahing in their booth.

Back home, the third and fourth peach trees are almost in sync: the Babcock started blooming last Thursday, while the Indian Free, my only one that needs a pollinator, is almost, almost blooming but just not quite there yet. Tomorrow. My Baby Crawford that I planted last month, once it grows up a little, should cover any time the Babcock’s not doing the necessary overlapping flowering while keeping up the steady sequence of ripening times. We do love a good peach.

Meantime, back when I pruned the vigorous Indian Free, I plunked the largest multi-branch in sugar water and left it in the kitchen a few weeks to see if it would do anything.

It sprouted thread-thin roots and I planted it in a pot as soon as I saw them, wondering if they would take and if so how to make the leaf/root balance play out right.

A few weeks later squirrelocity today could not make it uproot from that pot. Looking good.

And today for the first time it had a spark of green at one node and it made me just about giddy with glee: it lives! It really lives!

We don’t need two identicals. I’ve been thinking once it gets going it just couldn’t be that hard to find someone who wants glorious spring flowers and nice-sized leaves, a tree that is highly resistant to peach leaf curl, and if there’s a pollinator nearby all the better and they’ll have Thomas Jefferson’s favorite peaches but it would be worth having even without that. It’s a pretty tree. Without a grafted root stock I can only guess that it will want to be quite tall: future yarn bombers take note.

Let’s wait till we see a second leaf or three, though, m’kay? But still. Looking at it feels glorious. To life!



Starting yesterday
Wednesday December 30th 2015, 11:50 pm
Filed under: Crohn's flare,Family,Life

Beaver’s Disease–what the Alaskans call it (I learned something new this week.)

Giardia–what my microbiologist daughter calls it.

And in a moment of supreme irony, since none of us saw this coming when we were talking about it…

A possibility–what the doctor called it today (“Have you been up in the mountains?” Yes) as she wrote out the lab order.



Out on a limb
Sunday August 23rd 2015, 10:08 pm
Filed under: Crohn's flare,Life,Wildlife

It was a three steps back kind of day. A little discouraging, and the fever had begun to come in cabin flavor too.

And yet, when I had to crash and go lie down again, look who fluttered in. Same as yesterday: a dove in the camphor tree outside the clerestory window, keeping watch over her little flock by day. I watched her consider a few spots, then walk over to where there’s this little horizontal leg in the limb where it was just right. She turned around and around there, checking out all angles, just making sure of her safety, then back to facing me.

It was a good spot. She stood there a moment, then quietly settled down on her feet. She let her wings relax to brush the limb and then she simply shared the day with me for a good long time, however long I might need her, it felt like: she had all the time in the world.

When my first attempt at a picture was a complete whiteout she even let me walk closer for a better one, although she did lift her wings a bit.

Then she let it be.

It was strange and normal and lovely all at once, and I am grateful.