Michelle's Oatmeal-Cranberry Chocolate Chip Cookies

 

I’m probably typical among GenXers in learning to bake via the Toll House cookies recipe on the back of the harvest yellow package of Nestle semi-sweet chocolate chips. I have a vague memory of my mom and I in our kitchen that seemed tiny even to my six-year-old self, her showing me how to crack eggs, measure flour, and spatula the cookies off our blotchy brown cookie sheet. But as with so many things when it came to my mother, I was left to my own devices soon afterward. Which has given my kitchen practice a bit of a FAFO flavor—making it all the more fun. 

“There is no room for imagination in cookery,” says Anne Shirley in Anne of Green Gables. “You have to follow the rules…” Ah, but once you know the rules, oh the scope for the imagination! And an ineffable but relatively quick sense of satisfaction at creating something delicious and maybe even beautiful with your own two hands. 

Midwinter Spring Is Its Own Season

(Silly blueberry bush, it's January!)    

It is not uncommon to have a break from the seemingly interminable Portland rain in mid to late January. After months of dim, gray-white skies, the sun feels almost aggressive, with a glare that is blindness in the afternoon even as we all luxuriate in its heart’s heat. Sometimes we even get temperatures in the upper 50s, teasing the bulbs with spring only for the most gullible daffodils—or blueberries (such as mine above)—to bloom and then die in a February cold snap. 

Between melting and freezing, my own soul’s sap is quivering with a tentative spring. Though at 53 years old I’m more in the autumnal time of life rather than winter. Still, a spring time out of time’s covenant. My pedometer may continue reading only 300-400 steps/day (especially since starting the Estradiol patch in August 2024), but I seem to be doing more with those steps. A bit more cooking in the kitchen. A bit more trimming and planting in the garden. An hour or two more out of bed here and there. 

Blogging Like It's 2004

Why, hello there. It’s been awhile. Such a long while that you’re not even here (yet?). It’s been over a decade, after all. A lot has changed on ye old Internet. 

Ah, but not Blogger. It’s still here and almost the same as it was when I started blogging in 2004. Sure, like any long-neglected place it's required a bit of cleaning up. Changing the template. Getting rid of sidebars full of dead links. Reacquainting myself with the interface (now including such luxuries as a function to view the site in both desktop and phone view). 

But, like, don’t you know all the cool kids are on Substack now (and the even cooler kids are on Ghost and beehiiv)?

Yep. I’m aware. My inbox is a daily gauntlet of newsletter posts. And that’s all from just the free tiers. 

But, like, don’t you wanna make money from your writing like they do? 

Nope. Not unless I can make mountains of the stuff. And we all know that almost no writer is doing that. 

Here’s the deal. I’m sick. Like, really sick. Like, so sick I spend 20-21 hours a day in bed. Like, so sick I only leave my home a few times a year when I need health care my primary care provider—who makes housecalls—can’t provide. And I’ve been that way for nearly a quarter of a century (though for the first few years I was a little bit more functional and less homebound). 

Needless to say, illness means I can’t provide the dependable labor that makes lots of surplus value for capital. In 2001, the Social Security Administration concurred (though it took them until 2003 to do so). I was economically useless enough to require the beneficence of taxpayers in the form of a disability benefit. Because I had the temerity to become disabled before I had racked up ten years of work credits/FICA contributions, and because I had no other financial resources (a trust fund, other residual income, a working spouse), they would support me through a welfare program known as Supplemental Security Income (SSI). 

SSI is heavily means-tested. I have to report income above $85, at which point they deduct from my monthly check a dollar for every two dollars that I make—that is, a few months after I fill out forms reporting that income. Plus I also have to notify SNAP (and fill out more forms) so they can reevaluate my monthly food stamp benefit. And notify my building management (and fill out more forms) so they can reevaluate my rent because I live in low-income housing. As you can see, income for me gets complicated quickly. 

And frankly, all my needs are met. Yes, SSI is notoriously parsimonious (the monthly benefit for 2026 is $994 while the $2000 resource limit—which includes that monthly benefit!—limits my ability to save). But I am lucky. I have subsidized housing in which I cannot pay more (nor less) than 30% of my income. I have the aforementioned SNAP benefits that pay for much of my food. I have the Oregon Health Plan (OHP Plus), our state’s Medicaid program, which pays for most of my medical care at no cost to me. I get help with electricity through a program for low-income customers as well as an annual grant from the Low-Income Home Energy Assistance Program (LIHEAP)—though for how long is anyone’s guess given that DOGE fired every single person in the federal LIHEAP office during its blitzkrieg last year. CenturyLink gives me low-cost (and very loooww bandwidth—10 MBPS) internet. My Obama phone keeps me in touch with Social Security and my case manager, along with friends and family so that I can receive frequent texts from my aging mother that are either incomprehensible or reporting yet another fall. 

Are there things I wish I could have if I had more money? Absolutely---both prosaic and extravagant. Camborzola cheese, smoked salmon, or fancy loose leaf tea. Luxurious silk or muslin pajamas. Paid Substack subscriptions (I know! What am I thinking?!). A leather chesterfield sleeper sofa. Writing workshops. Door Dash. Indian bone-inlay furniture. Raised wooden planters and ceramic pots for my balcony garden. Antique fixtures for my apartment. Plane tickets for Long-Distance Lover to visit more. Books (always). But do I need any of them? Not really.

Though perhaps a good case might be made for the plane tickets. Tucked into a parenthesis a few paragraphs above, I noted that Social Security considers working spouses to be a financial resource. If I marry, I lose SSI. Quite likely Medicaid (or at least the fully-funded OHP I have now). Possibly housing. Complicating it further, Long-Distance Lover is British. To get a spousal visa, I would have to prove on the application that should my Beloved be unable to work, I would be able to support him without him being a recourse to public funds. Which would be a tad difficult, what with being a recourse to public funds myself and all ("legal" immigration is a lot harder than many people think). And so for nearly twenty-four years we’ve made do with Yahoo Messenger and outrageously-priced phone cards and Vonage and Skype and now Google Chat along with plenty of plane tickets. That would be the reason I would want to make mountains of money: to be wealthy enough to not only not need SSI but to be able to sponsor a spousal visa for my Beloved. But unless the Magic Health Fairy sprinkles a lot of pixie dust on me, that is about as likely as watching the earth rise while sitting on the moon. 

But, like, Blogger doesn’t have the SEO reach of other blogging platforms. Don’t you want people to find your blog?

Sure. Though it’s not my primary concern. Those other blogging platforms either have quite the learning curve or a monthly fee or are located in a certain country currently engaged in genocide. 

I like the idea of returning to my roots. Of having my own semi-hidden space on the Internet to experiment with a quirky variety of recipes, playlists, gratuitous shots of hummingbirds and Mt St. Helens, and medium-form writing that’s more crafted than a journal entry but too informal to submit to lit mags. Perhaps even chart my cognitive resurrection, if not a physical one (I am surely tempting the Fates just typing that). You know, the way blogging was twenty years ago when I first joined Blogger and we were all just making friends and writing about our obsessions and monetizing content was gauche. It was so the dream of the 90s but alive in blogging. 

Because, of course, I have no idea if and/or for how long I’ll be able to stick with this blogging thing again. 

So, like, why are you starting to blog again now? 

My last post here, back in 2014, was titled ever so hopefully “Hiatus.” After a few years, I began to accept that it should have been “Goodbye.” I was getting sicker and my ability to write erratic to non-existent. Besides, who wanted to read the ramblings of some shut-in trying to give hot takes that were not especially original? There was so much better, more amazing writing online (if even far more that was mediocre or worse). And there was also micro-blogging, i.e. Twitter. Which is where most people were spending their time rather than writing and reading blogs. 

Over the last seventeen months, I've begun to be able to write again for reasons I do not fully understand (menopause? iron-infusions to treat long-standing anemia? having interlocutors again thanks to Zoom? Magic Health Fairy dust?). I'm even starting to write stuff that involves devoted attention to craft, that grapples with big philosophical and spiritual questions, that requires cracking open lots of books (even though my eyeballs are still saying "audiobooks, please!"). You know, pretentious shit that tries to be all artistic. 

But maybe I never did give up on “hiatus.”

I’m also dipping my little piglets into various social media platforms to see if any of them feel social to me. Basically 2026 is the year in which I try to Rip Van Winkle myself back online. Perhaps I’m too late to social media (to say nothing of blogging). Maybe everyone else is rushing for the door to “touch grass” now that the AI apocalypse is nigh. 

“For us there is only the trying,” says T.S Eliot in his poem “East Coker.” “The rest is not our business.” 

This is me trying. The rest is not my business. 

But, like, now I want to keep reading your blog. How can I get it delivered to my inbox like a Substack newsletter?

Still going on about Substack, are ya?

Well, dear reader, I’m flattered. Both that you made it this far and that you wanna keep hanging out with me. I'm trying to give an email newsletter a go, sending out new posts via EmailOctopus that you can read from the comfort of your email app. 

I fear there will be some construction on this blog in the coming months. I hope you won't mind the dust and disorientation. 

Hiatus

No, I'm not returning to blogging. At least not yet. I'm still far too ill (though slightly better than I was when last I posted). But I have been doing a little housekeeping off and on over the last year. Several months ago I put every one of the 500+ posts into draft status until I had time to sort through them all and decide what I might want to keep. More recently I chose to return to published status many of my "greatest hits" so that anyone new stopping by had an idea of what this blog -- and me, to some extent -- have been about. A couple of posts were re-published as if I had only just published them rather than simply returned them to the state in which they had already been, perhaps causing some confusion with RSS feeds.  I do apologize.

 Most of all, I hope you have been well, dear reader. I have missed you and hope I may return soon.

Imagine...

(For the five[?] of you still reading...a brief lapse in the illness-induced silence as the muse paid me a visit this morning on the occasion of a letter-writing campaign to NIH Director Francis Collins to increase funding for ME/CFS research.)

Dear Dr Collins,

I respectfully ask you to imagine the worst flu you’ve ever had. You’re feverish. Sweaty yet cold and clammy. Your joints burn. Your throat is raw. Your stomach swims with nausea. You’re weak, dizzy, exhausted, and find it difficult to get out of bed. And any tiny bit of exertion makes every symptom worse.

Now imagine that flu never goes away.

Or imagine the worst hangover you’ve ever had. Every light is too bright. Every noise too loud. Every smell makes you nauseous. And your head is pounding. All you can think of is how you just want to lie down in a dark, quiet room.

Now imagine you have that hangover all the time.

Or imagine the worst jet lag you’ve ever had. You can’t sleep at night when it’s time to go to bed, even though you’re desperately tired. And during the day you’re groggy. Your brain is mushy. You keep forgetting things. At times you even feel disoriented.

Now imagine having jet lag every day.

Imagine a constant burning hum throughout your body. Your muscles jerk and twitch. Little electrical impulses zap you in different places -- your foot, your arm, your eye. At times the burning pain is so bad that it feels like you’re being given constant electric-shock torture. But most of the time it’s just a steady burn, like acid coursing through your veins. Or being burned from the inside out.

Now imagine that burning pain for years without end.

Imagine all of this -- the flu, the hangover, the jet lag, the unrelenting pain -- this is your reality every day of your life.

If you can imagine all this, then you can imagine how I’ve felt for the last 13 years.

You can imagine how debilitating a disease this would be. That it would leave you too weak to work, take care of your kids, be intimate with your spouse, go to church, out with your friends or have them over or sometimes even to talk with them on the phone. You would be dependent. A burden. Useless. You would spend your time alone in bed for days, weeks, months, even years. Isolated. Often in unbearable pain.

You would want -- indeed expect -- that your doctor would be able to diagnose your disease and provide you with medication and advice on how to manage it. Should you need to see a specialist or end up in the Emergency room, you would expect that the doctor seeing you would recognize your disease and the various ways his or her treatment might make it worse.

Except they don’t. Your doctor runs all sorts of tests which all come back inexplicably normal. Eventually he or she says you have a condition with a name that belittles your suffering. Or perhaps tells you that you’re not really suffering anything -- even as the weakness, dizziness, nausea, chills, headache and burning pain you feel tell you otherwise.

When you see a specialist, he says he doesn’t “believe” in your illness, as if you’re talking about the Tooth Fairy or Santa Claus.

When you end up in the Emergency Room -- because your heart palpitations have gotten much worse than normal, or you had a bad fall, or you caught a stomach bug that has you vomiting all night -- the nurse rolls her eyes when you ask for a saline infusion because your poorly-named disease causes you to dehydrate easily. And the doctor merely shrugs, tells you you’ll be fine, and leaves to treat patients with “real” diseases.

At the pain center, where your doctor has sent you for an evaluation of your pain, the provider you see has never even heard of your disease -- not even the derisive name commonly known in popular culture -- and decides that the morphine your doctor has been prescribing to treat that horrible burning pain (which she can’t explain so therefore doesn’t exist) is the cause of your fatigue and recommends your doctor decrease your dose substantially (dismissing your experience of it actually improving your sleep thereby actually reducing some of your fatigue).

While all of this is frustrating in the extreme, at the end of the day you can’t really blame any of these health care providers for their ignorance. They have been given absolutely no instruction about your illness, whether at medical school or from their continuing medical education. Your real frustration lies with the government agencies, in this case the National Institutes for Health and the Centers for Disease Control, that are supposed to be using tax dollars to research your disease and educate physicians. The CDC acknowledges that this disease causes the same level of debility as does Multiple Sclerosis, Congestive Heart Disease, and late-stage renal failure (even as its first suggestion for treatment of your illness is “psychological counseling” - would that be your first treatment for end-stage renal disease?). Yet in Fiscal Year 2010, the NIH spent $151 million researching Multiple Sclerosis. Over a billion on Heart Disease. $647 million on Kidney Disease. Even $81 million on Attention Deficit Disorder and $37 million on some category named “Arctic.” But on your illness -- the one that has robbed you and 1-4 million other Americans of your lives and left you to rot in bed because your doctors have nothing with which to even merely diagnose your condition, never mind actually treating it (not to mention costs this country an estimated $24 billion in healthcare costs and lost productivity)?

$6 million. That is how much the NIH spent last year on this disease. And it’s only budgeted $6 million for next year (FY 2012).

This neglect is why a handful of patients have dragged themselves out of bed today to protest in front of a Holiday Inn in Washington DC where a subcommittee of the Department of Health and Human Services is meeting to discuss this disease - just as they have done almost every six months for the last fifteen years. And at each meeting representatives of different government agencies come and make statements about how “of course they take this disease seriously!” and “we’re working hard to help those afflicted with it!” while committee members ask for more research, more funding for that research, better physician awareness of the little research that has occurred, and patients give tearful testimony of the same tragedy happening to all of them: I was once healthy and productive and independent and now I’m wasting away while life is passing me by and please, please help me...

You would want someone to help you if you had this disease, wouldn’t you?

Thank you for taking a moment to imagine what my life is like.

Sincerely, etc.

(In 1987 a small trans-governmental committee named this disease “Chronic Fatigue Syndrome”. Imagine if we called Alzheimer’s Disease “Chronic Forgetting Syndrome.” Would you really find that an adequate name for a disease robbing the victim of his or herself?)

(Note: the NIH spending figures are from the NIH RePORT site “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).” I appreciate the figures from that site can be messy in their complexity but I think it makes the point. The estimate of cost to the country is from the CFIDS Association. The prevalency figures are from the CDC and their statements regarding CFS are from their webpages on CFS.)

How sexism gave men a "woman's disease"

There is a slogan that pops up in feminist discourse from time to time: sexism hurts men too. And while I don’t know that it’s an argument most men find so persuasive they then choose to abandon the patriarchy, I couldn’t help but think of the refrain while reading the discussion in the comments section to this post by Cort Johnson. In his post, Johnson details the connection between disorders predominately/exclusively affecting women and the remarkable chance it’s a disorder at the bottom of the NIH research funding barrel -- ME/CFS included. A number of men took offense at Johnson labeling their illness a "woman's disease."

Do you realize how demeaning that label is for a male CFS sufferer? People generally operate from their own areas of interest, and don't consider their impact on other people- but frankly, I'd personally rather be thought of as crazy- then as having a women's disease. And it's not because I'm sexist. It's because the label is emasculating.

Now this obvious if likely unintended sexist sentiment aside (i.e. even being crazy is preferable to being a woman!), I do have a great deal of sympathy for the male readers who feel dickless with the label. Frankly, we women aren't too keen on the “woman’s disease” label either, which for a woman (perhaps breast cancer, notwithstanding)* is also like having someone remove the organ that defines us -- in our case, the head on our shoulders rather than the one men carry in their trousers. It’s not just being deemed “crazy” that’s the problem for women. It’s that having a "woman's disease" generally implies we don't have the intellectual capacity to understand something as complex as our own bodies. That only men get to say when something is really wrong and until they do, we're supposed to shut up and let them get on with real medicine.

So when it became clear that the majority of the people with a mysterious, debilitating disorder were women, it was men at the NIH and the CDC who wanted nothing to do with the disease that was so obviously nothing, leaving it to a handful of bureaucrats to research either because they were determined to prove it was a form of psychopathology (Straus, Reeves) or because it was their misfortune to be stuck with the job in order to placate Congress (Heineine, Mahy). It was men who labeled the disease “hysteria” (from the Greek word hystera or “uterus”) -- a term the American Psychiatric Association considered to be so sexist they had dropped it as a psychiatric diagnosis (or rather, renamed it “somatoform disorder”). It was men who described the condition they decided to call “Chronic Fatigue Syndrome” to other men with slides of Victorian women, hand to forehead, fainting. It was men at the NIH who moved the disease to the “Office of Research on Women’s Health,” which they knew to be a purgatory of chronic underfunding and dubious science. Sure there have been a couple of women involved here and there (oppressors always have their collaborators from among the oppressed). But it has overwhelmingly been as testosterone-driven a good old boys club as it gets.

If women had been equal members of the process, it would never have been called a “woman’s disease” because “woman’s disease” has too often meant “hysteria,” which in turn has historically been man talk for women being "difficult.” It is not we women who have cut your dick off, gentlemen, by pointing out how those with a "woman's disease" are treated. You can thank your fellow blokes for taking it, along with your other head. We women had our heads taken by the medical establishment a long time ago.

Sexism, as they say, hurts men too. And the 30-40% of ME/CFS patients with a penis rotting away in beds all over the world right now have the grave misfortune of appreciating that this isn’t just a feminist proverb; it’s an all too painful reality.

__________________________________
*While doctors take cancer seriously, the contemporary phenomenon that breast cancer has become is a uniquely peculiar combination of crass capitalism, titillation (what straight man prefers ovaries to boobies?), and reinforced gender roles. However, ask those same breast cancer patients how seriously doctors take them after the cancer is gone and they are left in a semi-ME/CFS-like state from chemotherapy.

The ME/CFS advocacy conundrum

A year ago I tried examining the question of why ME/CFS patients have been so unable to advocate for themselves effectively, particularly in the arena of fundraising. Except I did not find my thoughts particularly enlightening, even as I have continued to feel there are good reasons to explain our lack of political and financial initiative that I could not quite articulate.

However I was reading Cort Johnson recently recount the experience of being overrun by Multiple Sclerosis patients on Capitol Hill a few years back while participating in a CFIDS Associations Lobby Day. The comparison of MS and ME/CFS patients provided me with a lens through which to explore -- and answer -- the question of "where is everybody" with what feels like far more satisfaction.

Let me begin by noting that while there are more people who have ME/CFS than who have MS, only 18% or so of ME/CFS patients have been diagnosed. Thus there are actually more diagnosed MS patients than diagnosed ME/CFS patients.

MS patients have a variety of effective treatments to choose from (that are covered by insurance companies) including anti-virals, interferons, and yes, CBT, including consultations with cognitive psychologists who, through rigorous psychometric testing, can identify for the MS patient his or her cognitive strengths and weaknesses and train the patient to compensate for those weaknesses.

Doctors, insurance companies, families, friends, and communities at large all consider Multiple Sclerosis to be a legitimate, serious, and debilitating disease, meaning that friends and family members are much more willing to advocate for MS patients.* Indeed as a child I can remember participating in the annual MS Read-a-thon after reading about it in the back of a young adult novel I had received.

The impact of this legitimacy on patients cannot be overestimated, even if most MS patients don't even know they should appreciate it. There is no internalized doubt and stigma (maybe I just really can't handle stress, maybe I am just weak-willed). No internalizing of an overwhelming narrative that invalidates of the seriousness of their illness (I don't have a real disease like cancer or Rheumatoid Arthritis or AIDS so I shouldn't bother the doctor). No shame and fear that by admitting their disease - or simply stating the name of their disease - they will immediately be labeled histrionic, lazy, and/or hypochondriacal.

And patients with Multiple Sclerosis do not have post-exertional malaise. While it is true that chronic fatigue is a very prominent part of having MS -- so much so that some researchers even refer to this aspect of MS as "chronic fatigue syndrome" -- MS patients do not appear to have difficulty metabolizing oxygen. Their VO2 max levels do not drop significantly after engaging in aerobic activity, saving them from the overwhelming lethargy and apathy post-exertional malaise produces.

My best friend and godfather, Talal, has MS. Because he began Avonex (a form of Interferon B) and Amantadine (an anti-viral) within a few years of symptoms appearing, he's still in his PhD program. His primary symptoms are fatigue and cognitive problems -- brain fog, problems with short-term memory/working memory, organization, etc. While he gets tired easily and struggles with sequential tasks like recipes, he does not have problems with post-exertional malaise. He can still read methodology (i.e. dense, esoteric text). He can still write academic prose. He can still teach and make a monthly salary. He can still work an 8-hour day. He can even help friends move with his pick-up. He suffers little to no pain. He walks unaided. He goes to the gym most days. He's currently in the Middle East doing research for his dissertation.

I, on the other hand, had to drop out of my graduate program. I live on $674 of SSI + Food Stamps. For much of the last five years I have not been able to read books (despite owning 1200+), though my reading ability has been improving since increasing my dose of Acetyl L-Carnitine substantially and starting D-Ribose. Methodology, of course, is still out of the question. I too have a hard time following a recipe -- or even just making myself a bowl of cereal in the morning -- because my working memory and sequential tasking are poor. I walk with a cane because my balance is poor (some days I feel almost hemiplegic). I take 120mg of morphine a day plus extra-strength Vicodin (Lortabs) for constant, burning pain. I'm only awake in the evening. I have to have someone come in and do my laundry, cook my meals, and help me bathe -- someone who may or may not understand how sick I am. The only writing I can do is cobbled together blog posts and journaling. My state's form of Medicaid does not cover treatment for CFS, though there is no real standard of care anyway and my doctor knows almost nothing about my disease. I haven't been able to drive for four years now both because of pain that's unrelated to CFS and because of poor spatial perception that is most certainly related to CFS. My boyfriend lives in the UK but I cannot get on a plane to go visit him there because I absolutely must lay down after 3-4 hours, while the flight just to the East Coast is 6 hours, with the UK another 5 hours after that.

It is true that Talal is not necessarily the average MS patient, nor am I the average ME/CFS patient. But I do think the very differences in legitimacy and access to treatment are essential to explaining why MS and ME/CFS patients differ in their abilities to advocate for themselves.

Unfortunately we cannot get legitimacy and access to treatment without advocating for ourselves. Except we cannot advocate effectively for ourselves without legitimacy and access to proper treatment. I still do not have an answer for how to overcome this insidious conundrum. However I am most certain the answer is not to blame the victim, i.e. ME/CFS patients.

____________________

*Especially mothers. Some of the staunchest and most effective advocates for ME/CFS have been mothers (Pat Fero, Annette Whittemore, Jill McLaughlin – to name a few). Indeed my own local support group fell apart when one of our members left – taking her mother, our group facilitator, with her. The CFIDS Association may well have made a serious strategic error in not addressing Pediatric ME/CFS more aggressively from the beginning, even if adults are more likely to develop ME/CFS than children.