(“Making Me Understand” is a series of occasional posts where I talk about a particular work of art or artist and discuss its relevance to me, both historically and in my present situation. Here are the others in the series.)

Long ago and far away, in college, I bought an album by the Dutch band Bettie Serveert, Palomine, because I had enjoyed their radio hit, “Kid’s Allright.”

But the album also contained a cover version of a song I hadn’t heard before. The liner notes credited it to a band called Sebadoh, which I had heard mentioned but hadn’t actually heard, since I had not yet become an avid campus radio listener. I don’t know why the cover of the song struck me back then. Listening to it again today, I hear a lot of feedback and a waltz-ish rhythm, but… not much else to distinguish it. (I’m sorry, Bettie Serveert.)

But what that cover version did do for me was propel me into Sebadoh fandom. I didn’t listen to too many bands from the US at that point, aside from X. But 1992 was the year I fell for Sebadoh (and their musical cousins, Pavement.)

Sebadoh’s lineup has changed a lot over the years, with their most well-known incarnation featuring Lou Barlow’s sweet, melodic love songs that have more than a touch of saudade, and Jason Loewenstein’s heavy metal-infused indie rock noise walls. The band with two distinct personalities. Their music eventually formed much of the soundscape of my brief time living in the Midwest after grad school.

I started collecting Sebadoh albums. But it was early days for the Web, so I didn’t know much except for what Bettie Serveert had put in their liner notes. The song was “Healthy Sick” and it was from Sebadoh’s album, The Freed Man. The days of sending a SASE to a PO box for a mimeographed discography were over, but it was still difficult to find specific albums except by having a mental list you would run through every time you visited the right kind of record store. You know, the kind of record store you only find vestiges of today online, in blogs or alt-weekly archives, with maybe a scratchy photo of the storefront and “RIP” somewhere in the headline. Only the strong have survived.

While I was living in Ann Arbor (which, being a college town, had like three or four of these record stores), I would often make weekend escapes to Chicago. I needed frequent doses of Big City, and my friend T lived there. We often went to shows together, which was good because when the same bands came through Detroit, I invariably had no one to go with. Chicago also had plenty of good record stores, and it was in one of these, sometime in 1997, I believe, that I found The Freed Man. It was an LP.

Once I got back to Ann Arbor, I unwrapped it and settled in to listen. And it was… weird. It was a prequel to everything I’d heard. Like hearing the band in utero, through an ultrasound machine. It was just Lou Barlow and Eric Gaffney, Sebadoh’s co-founder, doing a couple dozen starts to songs. Just when one gets going, it’s over. Some tracks are just noise. Some, like “Punch in the Nose,” are hilarious. Some, like “Ladybugs,” offer Cliffs’ Notes fairy tales.

And after years, I finally got to hear “Healthy Sick” at last, in its original version. (If you’ve wandered here in search of actual rock criticism, I can happily point you to this professional appreciation of the song. What I do here, as usual, is tell you why this song is relevant to me.)

If you’re reading this post via email, it won’t work, but if you’ve clicked through to the Web, you can click play on the YouTube link below, and follow along with the lyrics.

“Healthy Sick,” by Sebadoh

No one can stop it all from crashing down to shit
Pushed to feel something more than just the sound of it
Time, time is the magic truth of stories
Sometimes magic is so very very boring

It’s a healthy kind of sick
A slow sort of quick
Very sad; I don’t feel bad at all
It’s a different sort of sane
A crazy kind of sane
A feeling without a name that they call “love”

Because I have my doubts, I know it must be true
Watch the dream die every day; I don’t know what to do
I know it’s only fear that makes me wonder
But I wonder why I’m so afraid
I wonder why I’m so afraid

Now, one can ascribe all sorts of motives to the songwriter – and it has to be Lou Barlow here, it has his moody, lovelorn fingerprints all over it. Is it a song about failure? Love? Illness? It’s all kind of hard to pin down, isn’t it? If you were to try to make an outline of the lyric situation of this song, things would keep falling out of it.

And this is why I love it so much. It’s a meditation. You can fixate on one line or one emotional state, or you can let them all blur together. And in either case you won’t be wrong. Not like those confounded “Magic Eye” pictures popular a decade or so ago, where you had to know how to train your eyes to generalize the image in just such a way so you could see the actual point, which was a different image. Some of us never got the hang of the stupid “Magic Eye.” We were left out. And it’s not offering any perky positive affirmations, either. It’s meditative, but extremely realistic.

This song isn’t leaving anyone out (except maybe my dear parents, who are perpetually flummoxed when trying to understand my posts about popular music). But, unlike a Hallmark poem, which strives to be uncomplicated enough to let everyone in, and leaves on your tongue the distinct taste of marshmallow sweetness while offering no substance at all, “Healthy Sick” can give you the impression that it gets where you’re coming from. It UNDERSTANDS, because it has BEEN THERE. And it’s not trying to fix anything or solve your problems, because it can’t even solve its own!

Is there any greater feeling in the world than the feeling of being well and truly understood? On the rare occasions I feel understood, an entirely different sun comes to shine on me – one with rays that don’t cause cancer. J understands me (mostly – and for the other parts he’s extremely tolerant), so I’m lucky we’re married. When I don’t feel understood, like, say, when I talk to medical insurance people for an hour with no progress, I want to cry. I do cry. The incommunicability is just… incommunicable. Painful. You know?

I feel like the deeper I get into trying to explain the significance of this song to me, the more sidetracked I get. As though the heavy clouds of pot smoke present at the creation of The Freed Man were secondarily affecting me, too. And boy, am I hungry.

Anyhow, it’s true. No one can stop it all from crashing down to shit. And the “magic truth of stories,” to me, suggests God. God has been pretty marginal for me in the past year. I wouldn’t say God is boring, per se, but is definitely beside the point for me these days.

And then there is the literal fact that I’m a “healthy kind of sick.” Week after week I meet people who are either visibly relieved I don’t look like death, or insist on asking how I’m feeling (I always turn it around and ask them how they are), usually with my kids around and when we’re headed somewhere and I really just feel like giving them the address of this blog. I feel good, people, okay? Well, at this very moment I feel sick, but it’s a common cold. (There will be no blog post about the cold.) It would be much less annoying if you asked me about my job search, or when the hell am I going to send out the essays I’ve been working on for a century.

I hope, if I’ve brought this song to your attention for the first time, that you like it. I don’t expect you to sing it in the shower or while driving (I do). Maybe you hate it! In the universe of “Healthy Sick” I would hasten to say that is totally fine too.

Yours, as ever, from the universe of grave illnesses that don’t make you seem very sick,

D.

All is good here. Better than good. Gnarly, you might say, if you were the type of surfer who said things like that. (Are there other types of surfers? Does anyone say gnarly anymore?)

Last week was the week of doctor appointments. This week has been all about cooking and eating and vigilance surrounding eating. I’m doing well on my diet and this week ratcheted up the exercise by a power of ten. Which means come evening I’m exhausted, but the good kind of exhausted.

Suddenly, the kids’ homework has shifted into high gear (mostly Young J’s – Young A is still young enough to find his homework amusing and unchallenging). There were some rough patches this week surrounding that. I guess it will be my job to smooth those over, come up with a system or a structure or a schedule. I’ve never wanted to be a manager, yet catch myself increasingly in postures that can only be described as managerial. Maybe I’ll name myself Acting Director of the household. I like the impermanence of that title. That it is a finite thing. Finite not because I think I’m going to die in office, but rather because my guidance won’t be needed forever. I hope.

I think I’m getting much better at inhabiting two worlds. One where there is nothing wrong with me at all (and truly, it feels like there is not), and one where things can go from bad to worse to… over.

This sounds pretty horrible to anyone who hasn’t been in a similar situation, I know. But given I don’t really have a choice? Why not just proceed as though it will be fine? Find new recipes, get through that huge stack of books, pay those bills. Even my shrink today told me I seem to be doing well. I needed that independent confirmation.

In just over two weeks’ time I’ll have my next MRI and CT scan. I’m not overly focused on them. They happen, and I get the results, and based on what I hear, I get to keep on keeping on, or else prepare for some new chapter. It doesn’t really bother me except in small and ridiculous ways, like, “Do I get the monthly membership at the gym, to save more money? Or do I just keep buying the ten-class cards?” Yes, I really think that way now. As a matter of course.

I hate the phrase “the New Normal,” which I think made its appearance after 9/11 and has been overused ever since, but… I don’t have anything better. (The New Banality? The New Mortality?) I have or don’t have cancer. Either way, as Voltaire wrote in 1759, in Candide, “il faut cultiver notre jardin” – we must cultivate our garden. We must renew our gym membership. We must plan meals for the week. We must make plans.

And in the words of Close Lobsters from 1987, “Let’s make some plans, let’s make some plans, let’s make some plans let’s make some plans, Ah, wa-oh, wa-oh, wa-oh…”

I visited the eye doctor yesterday, capping off a week which had me at a different doctor each day – Monday, Dr P; Tuesday, shrink; Wednesday, GP; Thursday, dermatologist; Friday, ophthalmologist. It takes a village. A village with a good scheduler.

My eye doctor, Dr. D, said he’d spoken at length with my retina specialist (they work at a clinic together once a week) about me. Nice to know I’m being talked about. Though I’d prefer it be in more entertaining circles. I continue to be an interesting case.

Dr. D tested my vision, covering my glasses with tape on one side, instead of the eye shade his assistant usually uses. My left eye, the one with the swollen retina, with which I’ve been unable to read for weeks, showed a lot of improvement. I was able to get within two lines of 20/20, and actually able to guess pretty well the last two lines. Exciting! I thought I’d noticed some improvement, but it takes a professional to prove it to you. I suppose I’ve found my ways of compensating in the meantime.

It was a good way to end the week, because the afternoon before I had spent over an hour on the phone with our medical insurance, trying to unravel why a refill of the steroid eye drops I’ve been using for weeks and which I’ve refilled a couple of times already, were suddenly costing $120 instead of $10.

First, I spoke with a woman who was unpleasant and gave me wrong information. She then transferred me to someone who seemed more promising in terms of getting me an answer, but before she transferred me, she demanded to know whether she had helped me. I gave her an earful, and she actually argued with me about my assessment.

I was transferred to a much sunnier and more capable of empathy operator whose oft-repeated phrase was “I’m sorry, I know this is frustrating” – which was better than her predecessor’s, “Bear with me” (followed by another five minutes of blaring music on hold). But Ms Empathy did no better at solving my problem, and I eventually hung up because I started sobbing and couldn’t stop. Reduced to tears by incompetence – now that was an unwelcome first for me. And the fact that it sat a lead weight on me for the rest of the day was also not great.

Yesterday, while in the waiting room at Dr. D’s, I defied the No Cell Phones sign and decided to have a rematch with the insurance people (it also drowned out the awful pop radio). I was armed with a printout from my pharmacy, and was not going to back down until they fixed things. Again it took almost an hour (good thing that’s how long you wait to see Dr. D), but I emerged victorious. But was I actually victorious, if I had to spend more than two hours of my life getting the insurance company to admit their mistake, and the process made me miserable?

When I finally went to pick up my correctly-priced eye drops, I commented on my ordeal to the pharmacy clerk (who now seems to know my name). She said I’d be surprised at the number of people who would have just paid $120 for a 15 ml bottle of eye drops. This makes me crazy. But also perhaps a little grateful that right now, fighting this sort of fight is my full time job. I wouldn’t say there’s a ton of job satisfaction, but it will have to do for now. 

I’m back. I’ve been back. The week has been this endless rigamarole of doctors’ appointments – one every single day – so I’ve been gathering elements of this post in my head, but unable to actually write. Now J is watching his beloved Mets play, as he will be into 2016, it feels like, and I have decided to stop wasting time on the web.

I had a lovely time away. It was the perfect week for watching the leaves turn, the cottage had a loaded apple tree out front that drew lots of visitors, and I sat and wrote. Finished one essay (I think) and started on a new one. Also, read. Also, cooked and ate, rejoicing in making small portions of whatever the hell I wanted. Here are some highlights:

My shrink this week asked me how cancer entered into my thoughts while I was away. It was a hard question to answer, because it was not some constant, hovering presence. But, after all, cancer was the entire reason I found myself in that beautiful place, and it was the impetus behind my writing the things I did, and it was the reason I had a small container of meds sitting in the fridge. I didn’t actually experience the luxury of forgetting – that is gone. It’s more that I’m getting good at shrugging cancer off so I can enjoy myself.

Would I, in healthier circumstances, have taken this kind of time off? It seems highly unlikely. Self-care always gets demoted until circumstances are dire. And once they are, hopefully you aren’t too late to take advantage of the situation and make the most of it.

My reentry home was kind of tough for the first hours – who were these short people flinging themselves at me and needing things  all the time? But I’m glad to be back. I am reminded I belong here. I am needed. (And loved, of course. What purer expression of love is there than bottomless need?)

Wow, this post is getting away from me, and I was planning to keep it short and sweet because I’ve been staying up way too late lately. What I actually came here to write about wasn’t What I Did On My Fall Vacation. It was a topic that I feel I need to approach with great care, because presenting it in the wrong way will make me seem like an asshole. And that’s the last thing I want.

From the beginning of this… thing… I’ve been pretty determined to make my experience count for something. Not just for me. I’ve hoped that people would find my posts and take some comfort from them if their own health trajectory was similar to mine in any way. WordPress, lately, has been occasionally showing me the search terms used to find the way to my blog. Unfortunately, not all of the searches are hopeful – one concerned steroid withdrawal in the last days of brain cancer. I’m sure that my post on that was the opposite of useful. I’m sorry for that, anonymous web searcher. On the plus side, I have managed to connect with a few other patients in similar situations to me., and in some cases trade useful information or provide reassurance. That feels really good.

Anyhow, even before the blog, I was telling the many, many people who wanted to help me out, help us out, that the number one best thing they could do was to start seeing a dermatologist regularly. I meant it. And over a year later, I am still hearing from friends who drop me a line before dutifully going for their skin checks. I feel happy and maybe a little proud to have brought this about. And especially happy that no one yet has wound up in my same boat.

Sometimes, though, I hear from people who are responding to my situation by linking it to something they themselves have recently gone through, or some change they have made in their life. The formula is usually “I have decided to do/stop doing x, because of what you’ve been going through.” (The first part of the statement is never related to cancer.)

It’s… complicated. I want to be happy for you, when you tell me this. You made a decision or a big change or you went through something difficult, and because I am your friend, I commend you for it! But at the same time… what you did really had nothing at all to do with my cancer. So is this a rhetorical device? Is it as poorly thought-out as someone who asks, in front of my kids, for a detailed update on my current condition? I don’t want to think that. Still, it chafes. Makes me kind of uneasy. As though you’re using me, in some odd way, to justify something you’ve long neglected to either do, stop doing, or do differently. Like my cancer is your catalyst.

There, I do sound like a total asshole. I’m sorry. Will it lighten the mood if I post a song in sort of the same spirit? That is, one that is on the surface kind of peppy and positive, but on further examination, kind of a downer?

(Lyrics here)

Signing off for now. Hopefully you haven’t been offended and will return. And remember, enjoy yourself! It’s later than you think!!

Tomorrow morning, I head north for a few days, where the autumn leaves have turned, where there are no lunchboxes to fill, and where no certain someone will come to my room in the middle of the night, informing me that he has to pee, thereby forcing me to stay awake until he does and then wishes me goodnight. (On the downside, J will not be there either).

I’m hoping to do a lot of writing. The forecast for Tuesday is rain all day, so I’ll probably be most productive then. I’m going to stay off this blog, Facebook, and Twitter while I’m gone. So don’t worry. I’m just fine. Unless you happen to read newspaper headlines to the contrary… and even then, you should make sure you trust your sources.

See you Friday!

Just wanted you all to know I am capable of writing beyond my own navel! I was proud to participate in this group project which generated a new deck of tarot cards. Each person was assigned an image at random to write about. Here’s mine.

(How do you like my new social media gambit? [Get more visitors to the blog by titling the posts after popular songs which I have never heard.])

I’ve been on a wee break. Blogging seems like the easiest thing to do, sometimes, and I think I’m finally ready to tackle harder things. Like losing the weight and rebuilding the muscle mass which I gained/lost during my long steroids bender. Like think about FINISHING other things I started ages ago.

I start each week with these intentions – don’t we all? And then reality encroaches – more school holidays (we’ve nearly reached the end of them, hallelujah!), more health setbacks.

Currently, my eyes are the problem spot. If I’m learning nothing else on this pharmaceutical adventure tour, it’s that you should never assume that the least common side effect of the medication can’t possibly happen to you. Somehow, I have been spared of the fevers and chills and many other side effects more common with the combination therapy I’m on. The ocular side effects don’t even make the handy chart. One of them occurred in 0.2% of patients, and the other in 2% of patients (meaning one patient in 55). Dr P has only had one prior patient experience iritis – in both eyes simultaneously, and (I guess) only once.

I find myself in the uncomfortable position of feeling like a guinea pig, even though my treatment has been approved and deemed safe. My ophthalmologist, Dr D, examined me yesterday. I am recovering well from my third bout of iritis, but then I mentioned offhand that I’ve been seeing lots of floaters and flashes of light in the other eye. For about a week if not longer. This meant – guess what? – more tests, more dilating, more waiting. In the end, he did not see a detached retina, but left a long voice mail for a colleague of his, a retina specialist, mentioning things like cells and “snowbanking.” I have an appointment with the retina specialist for Monday.  Which means I get to spend the weekend worrying about what happens if my eye stops working altogether, suddenly.

Earlier this week, on one of the kids’ days off from school, we took the subway up to the Bronx Zoo. We’ve only ever driven up there, so when we got off the train, I was trying to navigate the short but confusing walk to the zoo entrance. I started us off in the right direction, then thought it was wrong, then corrected course again. My glasses helped read road signs, but were no help at all with the map on my phone. My frustration level was rising.

We wound up on a dusty median where two busy parkways interconnected, and I saw a sign for the zoo but wasn’t sure if it was a pedestrian route. I had noticed out of the corner of my blurry eye a man sitting a distance away, and was dismayed to see him approach us offering guidance. We were in unknown territory and I hated the kids to see me not knowing where to go and having to talk to people who hung around on dusty medians. The man very kindly pointed us the right way, but I was so overwhelmed, I kind of snapped at him. As we walked to the zoo, I broke down silently sobbing. I hadn’t needed to be so mean. Crying made it even harder to see. Young J noticed I was crying and asked why. Poor kid, I unleashed every single bullet point of why I was crying. And very little of the list had to do with our actual situation. I did notice him trying to make things better – which is one of J’s most amazing qualities – and I was moved to see it developing in my kid.

We had a grand time at the zoo, but we stayed too late and wound up heading home on the train at rush hour. There were over 30 stops between us and home, and we didn’t get seats for the first seven or eight of them. By the time we reached Brooklyn, the kids were fed up and restless and making me crazy. I came home and once again, J was there to make things better. I collapsed until dinnertime.

I lose perspective very easily. For example, it took me a couple of days to stop thinking of the zoo outing as anything more than an ordeal. I’m sure the kids remember it much more fondly.

I obviously need to work on this, especially given the uncertainty underlying everything I do these days – I don’t have any guarantees I’ll be able to repeat any experience I have. My shrink talks about that a lot. She says that eventually I will come out the other side of this and be able to accept that my life may or may not be as long as I’d hoped, and that there’s a chance I should rethink the things I’ve kept putting off until later, until the kids are older, until until until… I guess I just have to trust her.

On the other hand, my illness, and more specifically the side effects brought on by the cure, have given me insights into maladies I hadn’t been familiar with previously. Last fall, I got a small preview of what it must be like to have chronic digestive issues. Now, I imagine I have a better understanding of visual impairments and how exhausting it is to navigate the world without being able to count on perfect sight.

It’s the end of the week. I am making chili for dinner, which, at least temporarily, will make me a very popular person. The house is looking less like a hurricane hit it than last week – which is funny, because an actual hurricane is apparently headed to our general vicinity. It will be a good weekend to hole up at home, out of the rain and sudden chill, and remind myself over and over that I have just this one life (of indeterminate length), and it would be a shame to spend so much of it being pissed off.