Eighty stitches, 1×1 ribbing throughout, Malabrigo Rios, US size 5 needles.

Last week, I was sitting in the waiting room at my cardiologist’s working on this when who should come out but my rheumatologist.

He wasn’t expecting me and didn’t see me with my mask on so I called out his name as he went by.

He spun around in delight. I introduced him to my daughter. He looked at the knitting in my hands and exclaimed, “Oh, that’s pretty! Who’s it for?”

“The doctor who operated on my retina two weeks ago,” I told him, realizing as I said it that, wait, in all these years, I’d never knit anything for *him* and I’d known him a whole lot longer.

If it occurred to him he never let on. He cheerfully said to Michelle, “If you live long enough you’re going to need two things: a cardiologist and a rheumatologist.” And then he laughed at his own joke.

But it WAS funny, because the last time I’d seen him, a year ago, he’d sent a message afterwards marveling that “After all these years, for the first time, the ANA is negative.”

ANA being antibodies to the nuclei of one’s own cells, ie the single most definitive marker for lupus.

So I’d lived long enough to, in fact, not need him–assuming that holds.

“The system is fluid,” he told me years ago when I asked if an allergic reaction now meant one forever because I had seemed to have had less of a one on an exposure, and I’d thought it always went the other way, ie getting worse each time. Curious. I’ll take it!

Anyway. So today I finished all but weaving in the ends for this other guy.

Maybe there’ll have to be an appointment made, remission or not.

Or maybe I can just drop one off at the desk in his department with a thank you for looking out for me all these years.

I’ll have to actually, y’know, decide on yarn and colors and knit one before I can start debating delivery methods.

We went to a potluck tonight and time and food with friends was a welcome respite from the worst of the news of the day.

To dear friends of ours in Minnesota: we are so sorry.

I debated to the very end throwing responsible disease management to the wind and joining the local No Kings protest. I badly wanted to be able to tell my grandkids I had, to set an example of standing up for democracy, of the right to peaceably assemble to petition one’s government.

But once again in the end, having done blindness, kidney failure, and cerebral vasculitis in autoimmune reactions to summer suns, I just couldn’t make my husband worry like that. And I wanted to see those grandkids grow up.

But color-wise I was dressed the part because that at least I could do.

Someone else there had on white stripes against red, her pants blue, and I knew without asking. The refugees in that family were only two generations ago.

We caught each other’s eye but didn’t say anything: not in someone else’s home while two older people were there who already know where we stand and who break our hearts.

The kicker being that one of them emigrated here, many years ago, after falling in love with an American.

With my train-wreck immune system, I slept twelve hours, got up for awhile, slept some more. That vaccination always does me in for the one day afterwards, but it’s worth it. I won’t get Covid again–and better yet, I won’t pass it on to anybody else. I don’t know if the current version circulating damages hearts like the original one did mine but now that we don’t have to go through that, I am so grateful to every person whose life’s work went into offering this gift to their fellow man.

I can give up a day for that.

Some years ago I mentioned a woman in my lupus support group whose health and mental health were spiraling downward together. She was an immigrant and at that point had no support system here other than us. We all did our best to reach out to her but it was hard to feel successful.

One month, an unusual thing happened at the meeting: only three people showed up. Her, the group leader who is a nurse as well as a patient and a very gentle, quiet soul, and me.

Listening to S, it was a wonder that she had even made it there but that seemed a sign that some part of her still wanted to live.

In the quiet of the room she opened up just enough for us to see what she had finally decided to do and said I’m sure more than she meant to of how she was going to do it.

Which she could have just gone and done already and none of us would ever have known, but she hadn’t, which said to me that she didn’t really want to, she just saw no other way out but had wanted to see us and say goodbye to us first.

We did our best to just listen, to convey that we cared.

And then I raced home and grabbed the phone I could hear on, because my cellphone in those days was not it.

Riiiing.

I know, HIPPA and all that, but can you tell me if you *don’t* have a patient named–? I explained the situation.

The first doctor’s office staff, after some checking with colleagues for guidance on the situation: We don’t have a patient by that name.

Thank you very much! (Calls second office, repeats the question.)

(Checks with colleagues, too.) We can’t tell you that.

Alright, cool, she’s with your practice, I said, I thought so. So: IF you have a patient by this name, this is who I am and my phone number, this is who the group leader is with her name and phone number and she can verify that this is what this patient told us at our support group meeting a few minutes ago.

They thanked me and got me off the phone fast and were right on it.

Five minutes later the woman herself called me. She was furious.

DID YOU CALL THEM?!

Yes. I did.

WHY DID YOU CALL THEM!

Because: I knew you would be angry with me. You. Are. Worth. That. to me. You. Are. Worth. That.

There was a sound that I could only interpret as wanting to be angry but suddenly turning into what started to be crying but she hung up fast before I could hear more.

And then we didn’t know, and we didn’t know, and we could only pray and wonder, but the two of us never told the rest of the group anything more than that we were worried about her, and that was nothing new to them because they were, too.

Eighteen months later she surprised us by showing back up. She tired easily, but there was a resilience I hadn’t seen before. She didn’t mention the suicide attempt, just that it had been hard–really hard–but that she was doing a little better now. And she had learned that when you have autoimmunity affecting the stomach, your body doesn’t process food well at all and studies have shown that that can impair your mental function and cause depression. So they’d been working on all of that.

At the end of the meeting she walked out with me and once there was no one else around to see it, threw her arms around me and thanked me.

Our group went to Zoom with the pandemic and she was part of it for awhile and then eventually she wasn’t and we’ve all wondered and hoped things had held for her. She had come so far.

Our group leader’s phone rang this week.

Our friend’s family had moved to Canada when she was a child and then she’d come to the US.

I can’t imagine how it must have been under the current regime.

It was her. She wanted to touch base and let us know: she had moved back to Canada and had bought a place with her elderly mom and things were going very well.

Our leader marveled, She sounded so, so happy! I’ve never heard her so happy, it was so wonderful!

She was home. Country, family, everything–at long last she had come home.

I’ve been fine/no big deal/not worried/it’ll all be fine/I’m sure it’ll be negative/ about the whole biopsy thing. But today I was  remembering the GI doctor who diagnosed Crohn’s: she suddenly realized she was talking about it without taking my measure on the news she’d just thrown into my life and abruptly asked, Wait–are you okay with this?!

What–that I have a life-threatening disease? I laughed ruefully. So what’s new?

Today I found out my cousin went to the ER in pain and found herself with a stage 4 aggressive ovarian cancer diagnosis. If I’m in shock, and I am, I can only imagine how she and her kids feel.

Somehow that broke through whatever facade I had with myself and now I am just really really really wanting to have my news given to me and over with, whatever it’s going to be.

So I threw myself into hanking and scouring coned yarn and deciding that yes, that blue really isn’t the right blue and yes, I’m really going to go order more and have to wait again for it to come–and then I did–because I can control what I put into my little sister’s project and by golly I am going to do it right.

During that thumb-twiddle wait I wonder if any of my wool, any wool, would be soft enough for my cousin’s head while going through chemo. If you have any experience on that, (I mean, I’ve certainly made them, I’ve just never gotten any feedback on them) I need all the guidance I can get.

So since I couldn’t join the Hands Off! protest for the sun exposure, I watched the Saturday sessions of the LDS Church’s semi-annual conference in real time rather than later. (Link is to Sunday’s.)

I was struck by how again and again the talks were pleas for compassion and humility, reminding us at this Easter season how the enormity of the Atonement was in Jesus’s compassion for every single one of us, more than we can ever know. “Love one another as I have loved you.” One speaker even said to ‘never let your party or’ (as he quickly added I forget what else, I was too busy being surprised) ‘be greater than your love of God’–given that they never, ever talk politics from the pulpit. I’m quite sorry it needed to be said and very glad he said it.

Afterward, I checked the reports: well done, everybody! Look at all those crowds–yay!!! Look at DC. Wow. Of course WaPo reported it: they had to. Wow. You did it. You spoke up for the least of these and for all of us–and for me, on a personal scale in my disability. Thank you. Thank you. Thank you.

Someone had a lot of fun putting a dragon eye in that tree. The fact that the iris looks like a black beetle is the perfect extra Halloweeny touch to it.

Wrote to my city council members today. Wrote my congressman. Weighed the morality of being part of the April 5 peaceful pro-democracy demonstrations vs doing right by my family and not risking a flare by being out in the sun to hold up one of those placards. The physical reality of lupus always wins and I always stay inside and it’s so deeply frustrating–but it’s also how I made it to thirty-five years since diagnosis.

But by golly I can drive past slowly honking my horn and waving and cheering in solidarity.

Dunno if you saw the guy who tried pulling a stun gun on an older woman at a demonstration in front of the Berkeley Tesla dealership last week. It is fair to say that that UC Berkeley medical school professor was not having it. Peaceful, peaceful, guys! but yeah, she was not going to let him do that to anybody else.

Deep breath. And a thank you to the cops who came to serve and protect peacefully and they did.

(I’ll put the P.S. up here: In falcon news, the female was sound asleep brooding their four eggs when her mate decided he wanted some nighttime duty too and woke her up to kick her off. This video is for every one of us who is not naturally cheerful at being unexpectedly woken up in the middle of the night. She was mad!)

—

Weird chunks of raised itchy scalp. Memories of a hairdresser from when I was pregnant with my second and long before I’d ever heard of lupus feeling those dried lumps in her hands and asking me gingerly, Did you know you have bald spots?

I had the baby, the hair grew back in, and it was all a weird one-time thing.

Till this year. I knew this time not to scratch at it because it would just pull any hair out with it and after the basal cell surgery took a round inch-plus off the top there awhile ago, let’s hang onto what we’ve got. Gradually it settled down. Last week there was the last of one lump, today I didn’t really feel anything up there. But it was my six-month dermatology check anyway, so I mentioned it.

When did it start?

Around the time of Trump’s inauguration.

She guffawed.

But it was true, and at some point I’d wondered if my angst over the destruction of the rule of law was manifesting itself on top of my head after it spread from one spot to three when the political news was particularly grievous.

Naming a reason for it–or just random chance, or maybe doing better at staying out of the sun–something made it calm down and go away, which is wonderful. May it stay away another 40 years.

Best way to cure something is to make an appointment to get it seen.

Saw my longtime rheumatologist a few days ago for the first time in two years. He ordered a CBC (complete blood count) to check on things.

I got a note back, and you could just hear the wonder in his voice as he typed out the words:

After all these years, for the first time, the ANA is negative.

That would be anti-nuclear antibodies, ie antibodies to the nuclei of my own cells, a hallmark of lupus. That doesn’t mean I’m cured. My eyes are fiercely reactive to the summer sun.

But some inner part of me took a deep breath and, surely echoing my doctor as he stared at that computer screen in delighted disbelief, at long, long last, exhaled.

—

(Edited to add, my Crohn’s was, at biopsy, always a subset of the lupus, so I think we’re two for one on this.)

(Foil at bottom to thwart slugs.)

The ordinary weekly chore of dragging the hose around the yard, pointing it towards a tree, setting a timer, BRAAAAAP then the next then the next then the next, repeat, while taking the time to closely see the changes: some week by week, some from even just this morning when my tomato was an inch shorter and the netting tent was tall enough.

This is why I haven’t put in an automatic system. There’s calibrating to varied sizes while knowing the sizes will change but also I seem to want it to make me have to go out and spend one-on-one time with the outdoors in the evening, when I finally can in the day.

Everything’s growing. Everything’s reaching up and out to what each plant or tree was meant to be. The best of the sun to them all.

These are the moments when I think having something living to watch and nurture and see responding to care, even a seedling in a paper cup, is as necessary to the soul as the air that we breathe.

Bright, cheerful, blinking, and suggesting a tree underneath: the new neighbors put up a set of Christmas lights from the get-go. It’s actually kinda cool. And they leave them on all night about every other night.

I figure if nothing else, sheer curiosity will get me to walk around the block when the sun is safely low enough in order to introduce myself to the folks behind our house.

But there is the unwanted temptation to ask, what on earth?–nicely, while trying not to be all in their business.

I do think though that I should ask if *my* lights are bothering *them*. There’s no curtain on our transoms. No light pointed out the window, either, but you never know how it looks from the other side.

I got hours of portable knitting in, but it was nonstop with no way to so much as walk out of the room for a break, with a fine, slippery cashmere/silk on very slick needles that the stitches kept wanting to leap off of. My hands needed to stop after that.

Not that I’m complaining. It’s good to see that 2019 Stitches West skein finally starting to live up to its endless sweet-talking promises.

Today was, at long last, the day for the retina surgeon.

He was thorough, he took his time, he asked for questions, he gave plenty of info so that I could begin to figure out what to even ask, he came highly recommended by other eye doctors, and I came away feeling like they were right–I’m in great hands here.

Did the lupus have anything to do with this?

Maaaaaaybeeee? he answered. We really don’t know enough yet. But, (scrolling through past meds) are you still on Humira? That’s a great anti-inflammatory, it could help with this.

No, that stopped working. ’09, colon’s gone, I’m off it.

Had I ever had iritis?

Yes, probably 30 years now, and narrowed optic nerves (we both knew that means autoimmunity at the eyes) but they had no baseline at the time.

Did I need surgery?

Yes. He could set it up right now. It won’t be like cataracts, where you go in with impaired vision and walk out marveling, I can see! It will be a gradual improvement over time, but improve it will.

But mine was not an emergency. Yet. He wanted to know how I was doing with it.

Well, I said, I have this small pill I have to split every day; it has a cut line down the center. I can see it fine with my left eye; I am totally blind to it with my right, with the pill itself fuzzed out. Reading has gotten hard (although I still do a lot of it) and I find myself holding things to the left side, which was always my bad eye. But the brain compensates and I wouldn’t even have known there was a loss of the center of vision if I didn’t shut the left, just that fine/small things seem difficult. Lines of text wobble in height and intensity.

I didn’t say, And it’s been a strong motivation to knit everything! Right now! Don’t wait!

He compared November’s screening at the optometrist’s to today’s. He could schedule it or he could give it a wait-and-see for two or three months to see how it goes.

I asked him, If it were your eye what would you do?

He considered that a moment. The latter.

Reassurance and a plan felt great. April, then, for a re-check and a decision then, and most likely we’ll schedule it then.

The receptionist, trying to warn me about the time involved with such screenings, told me, Set aside three to four hours for it.

Yeah. (I almost held up my project.) I know.

I’ll bring an easier wool and needles for flying a bit blind with those eye drops.

We were visiting our oldest’s for Thanksgiving when she offered me some lupus-protective sunblock for the walk we were about to take with the grandkids: and that is how I found the lump in that upper socket.

I just figured a zit was about to pop in a weird spot. It didn’t. I mentioned it to the optometrist, who immediately referred me to the right eye doctor.

It has grown since then. Not a lot. It is harder. A little. But definitely.

They could not get me in before January.

All this time I’ve been ignoring it, going, it’s no big deal, I can’t do a thing about it yet if it is, things have always turned out okay so far so this one will, too.

The theory on that anti-tumor-necrosis factor that granted me these last 20 and a half years is that it could cause cancer about twenty years out, and since I was trying really hard at the time to still be alive the next day that sure sounded like a bargain to me. It was.

So it’s kind of interesting to find myself trying not to freak out after all this calm nonchalance now that the appointment is only two days away. I don’t know if I’m finally giving myself permission to feel the possibilities?

No! Because I said so. Look at all that yarn and plans (acknowledging that I have let myself down with a bit of a knitting slump of late) and hopes waiting on me. My grandkids. Time. I want all of it.

Just typing that out loud makes it sound pretty overwrought. Good. I’m quite happy to go back to the no-big-deal.

I just want to know–but when I do, maybe I’ll just want to be back to where I didn’t have to know yet, and I know that, too.

You know exactly what I need to do here: get those needles moving. Create some love to put out into the world.

Being told out of the blue today that an old friend has inoperable stage 4 cancer says that sometimes things turn out a very big deal and life is so fragile and you just never know. Love your dear ones.

Me, I’m looking forward to helping my oldest granddaughter in her pursuit of learning to be a lifetime Knitter with a capital K.

So to celebrate my birthday, the DMV took my picture.

Then they took it again.

Which immediately took me way back to the Maryland DMV that I went to with my newly-married name: that was the time that cured me for life of pushing my slipping glasses back up at the bridge with my forefinger, because what the camera saw was my finger up my nose. The cameraman shook his head and told me, You don’t want to look at that for the next ten years, lady, and insisted on a do-over.

Who knew DMV guys could be nice.

They tested my vision. I passed.

The forms-and-vision guy was bored out of his mind and a little annoyed at having to deal with some old (officially! Today!) person who had a hard time hearing him; he was like, get’em in get’em out next come on next.

Charming he wasn’t.

I’ll show him (glancing down in my purse.) Yeah that’s about the one he deserves. A bright green alligator with yellow spikes. A reptile. Rows of teeth.

(One of my sons on the phone later: you didn’t.)

Me: I did, and the thing is that when I handed the guy that finger puppet and told him Merry Christmas (a slip–I usually say Happy Birthday for universality but the season got to me. So sue me) his face entirely lit up. He was so delighted!

It is fair to say that I was more surprised than he was. He showed me, for sure.

Later, a friend dropped by and not wanting to bother Richard at work and not wanting to be in the sun, we sat in my car laughing and having a great time catching up and feeling like teenagers hanging out while the real teenagers next door came and went and probably wondered what on earth was up over there.

My sister–my oldest sister!–called and told me she’d streaked her hair purple when she turned 65 and I told her I wished she’d told me that sooner or that I’d thought of that and the DMV could have preserved it forever. What a missed opportunity!

It was the best day. I think I should turn 65 next year, too.

It was 2:15, sundown was 4:25, Seattle being at a latitude that gets an hour less of sun than we do, so with sunblock and a big hat I thought I was pretty well covered lupus-wise against the UV.

We took what I thought was a pretty long walk for the kids. They rode their training wheel bikes and I don’t know if that took more energy or less, but we definitely had fun. Explored the new neighborhood going up. Then the park. Lillian was surprised to find out that Grammy can swing on the swingset, too. And then at last we headed for home.

I was feeling it that night. Costochondritis isn’t dangerous, but it was a warning, so when Mathias wanted to do the two-mile loop around the wetlands the next day I with a quiet regret that ran deeper than I was ever going to say stayed home and started knitting another hat.

Everybody understood.

They split into two directions, with Lillian going for a shorter ride but it was still good and long enough to wear a kid out.

Then the door opened.

Lillian had found a leaf. A big leaf. A perfect, pretty, autumn leaf. To share with her Grammy. If I couldn’t take that walk in the woods then she was determined to bring that walk to me.

(The folded edge happened when I was packing it to take home. Oops. She took better care of it than I did.)

I look forward to the day when I can show it to her and tell teenage Lillian the thoughtful thing she did when she was four and how grateful I am for it.

She’ll probably already know, because it made her so happy, too.