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"Will you please call me Cordelia?"

Cross-posted at Behind the surface

"Will you please call me Cordelia?" she said eagerly.

"Call you Cordelia! Is that your name?"

"No-o-o, it's not exactly my name, but I would love to be called Cordelia. It's such a perfectly elegant name..."

"...Unromantic fiddlesticks!" said the unsympathetic Marilla.


"Do you never imagine things different from what they really are? asked Anne wide-eyed.


"Oh!" Anne drew a long breath. "Oh, Miss -- Marilla, how much you miss!"

"I don't believe in imagining things different from what they really are," retorted Marilla. "When the Lord puts us in certain circumstances He doesn't mean for us to imagine them away."

Anne Shirley has been a kindred spirit ever since I first watched the Kevin Sullivan production of the classic book by L.M. Montgomery. The first time I heard her talk about "so much view for the imagination," I remember thinking, someone else thinks like that too? followed quickly by oh but you're not supposed to say that out loud! Like Anne I spend a lot of time in my imagination. And when you spend the overwhelming majority of your time alone (and in bed to boot) the imagination can become your permanent place of residency.

For the last four years now I have required an in-home caregiver. I don't know why, but I always imagined she'd be a thick Germanic sort of woman. Probably based on a character in a cartoon or TV show that I've long since forgotten. She'd be no nonsense. A bit like Marilla, though more affectionate. Or maybe Thelma Ritter in Rear Window -- a caring but bossy nurse scolding me when I didn't rest enough or spent too much time on the computer. She'd be discerning, dependable, and devoted. A sort of second mother.

The reality, of course, is completely different. It's having a total stranger come into your home when you've just waken up and every dish you own is scattered about the kitchen counters and the laundry is a smelly mound Sir Edmund Hillary would have found a thrilling climb. It's having a total stranger who doesn't understand that while you may look perfectly healthy because you're young, not paralyzed on one side, and still have most of your wits about you, you're not. It's having a total stranger handle your belongings both precious and intimate.

Indeed the very first day with my very first caregiver ended with laundry soap all over the bathroom, the hardwood floor stripped with dark grime after being mopped, and the LCD screen on my laptop sporting a giant crack after she tripped over the cord and sent it flying (to be fair, that last one was mostly my fault for leaving my laptop in a precarious position). I burst into tears upon her departure. The agency actually fired her a couple of months later after she repeatedly failed to show up for work. I felt badly for her because she had no telephone but did have a child with a father who wasn't particularly helpful with childcare. Yet she was obviously in the wrong line of work.

It got better after that. Her replacement, J., was as perfect a caregiver as I could want. Her first day she simply went about tidying up the disarray of my home without needing a great deal of instruction. Over the months I learned about her kids and grandkids. Even about her own childhood. When my building's vacuum cleaner broke, J. picked up a used one for me at a local thrift store and never charged me for it. Indeed when I gave her a Christmas gift, she was visibly uncomfortable being on the receiving end of generosity. I was heartbroken a year and a half later when the agency she worked for dumped all of us county-paid clients. The county then moved us all to the only other agency they were contracted with and J. wouldn't work for them. I didn't blame her. The pay was shit and they effectively didn't provide health insurance. Which meant that her replacement wasn't nearly as good.

This last January I was switched to a different program which doubled my monthly allotment of caregiving hours. But with this new program, I have to hire my caregiver. And I hate calling strangers on the phone. With the old program, the agency just sent me someone. If I didn't like the person, I could ask for a new one but the agency was really the boss. Now I am and it feels...weird.

The first woman I hired, G., had the potential to be another J. But she had to quit after three months when she got a job that provided health insurance. I quickly hired S. as she worked for a woman just across the hall. S. could sense my natural passivity and promptly decided to take charge herself, which, on her second day, included replacing my old laundry baskets and handing me the bill. I hate conflict and since it was only $4.50, decided that was cheaper than mustering the energy to say no. Later that day she decried the clutter in my apartment and, after asking me if it was because of my illness that I'd "let the place go," notified me that she wanted to completely reorganize everything. Yes, there is clutter in my apartment though, while not nice to look at, it is neatly piled on shelves and out of the way.

This was not exactly the sort of bossy I was looking for.

So I mustered the energy to sit her down the next day and explain that I appreciated her ambition but I needed to channel that ambition based on my priorities, not hers. In addition, if she made me feel self-conscious about everything, she was not going to work out. She apologized, acknowledged that I was the boss, and agreed to follow my agenda. I thought it was going to work out after that. But, alas, she switched to a more passive-aggressive approach, telling me how I needed to replace this or that, including my vacuum as it hurt her shoulder. When she emailed me a few days later to tell me she was quitting because her shoulder hurt and her doctor told her to cut back on work, I was relieved. Fake excuses do make the world a happier place, no?

But that left me needing to hire yet another new Home Care Worker. And calling more strangers from among a list of names. It took me almost a week before I even looked at the HCW list and a few more days before I started calling potential caregivers. While my phone phobia could explain some of my procrastination, there was clearly more to my dawdling.

As I sat and thought about my feelings, I realized that, along with my continuing resentment over not being able to do my own cooking and cleaning, was fear and vulnerability. Will the new HCW understand that I really am sick, despite my seemingly healthy exterior? Will I have to prove I'm truly deserving of in-home care? Being fat makes me particularly paranoid about being seen as lazy. And breaking in a new caregiver can be tiresome with having to show where everything is, what needs to be done, and how to do it. I'm tired of putting together task lists and care plans (I haven't ever even bothered with creating a job application or seeking/checking references as apparently I'm supposed to). Being my own HR person is exhausting. I just want someone to simply take care of me already.

In the end, here alone all the time, it's so easy to slip into my imaginary world with my imaginary caregiver who already understands how ME/CFS works and will make me rest. Who doesn't need me to list every last thing that needs to be done but just...knows.

While I don't know if it was God, karma, fate, or whatever that put me in the circumstances that I'm in, Marilla's point that I'm not meant to imagine them away has a great deal of merit. Once I awake from my reverie, the real world is still here requiring my action. I can whine all I want about how hard it is. And like Anne begging to be called Cordelia, I can beg for life to be like it is in my imagination, but at the end of the day she was still Anne -- with an "e" -- and I still need to hire somebody to come do my laundry.

Eventually I got around to hiring another home care worker, P. And she was great. Not very Marilla-like, but she cleaned even better than J. She cooked the unusual Chinese medicinal recipes I gave her with ease. She even agreed to work my dream schedule. However after a wonderful first month, her attendance became erratic. During her first absence I was just so worried about her I didn't think about being upset. Her excuse, that her basement along with her cell phone had flooded, seemed a bit shaky. But I was so relieved she was okay, I let it slide. Then she slept through an alarm one day. Or forgot to show up on another. When she didn't show up last week, with a heavy heart I finally had to let her go.

So last night I hired my newest HCW, SL. I'm sure she won't be the caregiver of my imagination, even if she does kind of look like her. I don't even know if she'll be as perfect as J. was. But she's had years of experience working with the Department of Human Services Home Care Worker program. And when I explained how ME/CFS works, that even though I can walk around the apartment unaided (though sometimes with a cane...or two) and may not look sick I really am, she immediately responded, "I know you've got to be really sick because they don't just give anybody a Home Care Worker."

But when she starts next Monday, I'll still have to explain where the dumpster room is, how I use vinegar for fabric softener, and that it takes $1 to wash and seventy-five cents to dry. I'll still be the employer who needs to articulate employee responsibilities and evaluate her performance. Ours will be a business relationship with her providing a service that the state pays for on my behalf.

Though I can always imagine it's an all-knowing and kindly if bossy nurse...



I have missed you. :)

You write so clearly, so directly, about the realities of a difficult situation. I admire your groundedness. And I'm glad you're here. Not being polite, just straight with you.

Keep on writing, Lady.

I use vinegar too.


I just read your post while eating lunch at my work desk. I became enchanted with your story of Home Helpers & promptly slipped with the knife & fork & spilt salmon & green salad all down the front of my clothes. It actually was very funny & you would have found it highly amusing if you had been sitting in my office with me.

You've instantly uplifted & inspired me to be grateful for all the beautiful things in my simple life.

Anne of Green Gables sits on my bookshelf unread for over 30 years. You bought it back to me with your writing.

thankyou for your gift today
PS Have you ever written professionally?

I forgot to say --

I have loved Anne Shirley since I was 11 years old. She was my kindred spirit too. :)

I was housebound a few winters back and I went through all my LM Montgomery books, Anne and Emily, Pat of Silver Bush, the Story Girl ... they soothed me as I slipped into their world and away from my own for awhile.

Looks like we have more in common than we previously thought. :D
Jody & Michelle,
I just love those two words - "kindred spirit".
They should be used more often - they are so meangingful. Such an expression of togetherness & friendship.
Yep. I've read Anne of Green Gables a couple of times and Anne of Avonlea (or had it read to me by the good folks at Librivox) once. Watched the movie version, er...many times. I was more of a Laura Ingalls Wilder fan as a kid but wish I would have read Montgomery earlier in life.:)

Jody: Thanks. I wish I wasn't sleeping so damn much so I could not only write more but hang out here and a few other places. But well, Anne didn't get be called Cordelia either. ;-) Oh and I always amaze everyone with the vinegar. My towels are so soft.

Victoria: You scared me for a moment! I was afraid you were going to get cut with that knife and fork falling. Hope it wasn't too much work cleaning up the mess. And glad that my piece provided you with some inspiration. Gratitude is so important to staying sane with this illness.

Yes, I have written professionally, though it's been rather hit and miss because of my illness. It's another one of those things that being sick frustrates. Most of my writing at the moment has consisted of blogging at Behind the surface and at a more adult blog where I also talk about illness from time to time.

Have you read any of Montgomery's other books, her other Anne books and other series?

I also read the Little House books, got a set of them to read to my kids and got hooked on them myself. :) We lived in the country with a woodstove and precious little money at the time so I could relate to it.

And vinegar is awesome. Couldn't believe the difference the first time I tried it. The towels and clothes smell better and they are softer. And we have less chemicals to deal with.

Talk to you later.
Jody: Nope. If I was awake more, I might read more of Montgomery. Though I didn't enjoy Anne of Avonlea as much as Anne of Green Gables. Maybe because Anne grew up but I haven't quite yet. ;-)

I don't know Michelle ... I don't want to burst your bubble but you seem pretty grown up to me. You handle yourself, with an incapacitating illness, with some real proficiency. And when you write on the subject, you are astonishing. Very concise, and apparently a tremendous memory -- or great crib sheets.

However if you prefer to pretend you are a little girl with our Anne, far be it from me to shake that up.

I'll go along with it. :D
I really hope to read this in a book - maybe self published? - someday. You're an exceptional writer. Both you and Jody have such a naturalness to your writing - such a nice pace to it.

I really enjoyed reading it. Good luck with the new worker.

These blogs, by the way, are not very visible on the Forums right now; which has been a big complaint by Forum owners to VBulletin. With the next upgrade in August they they should be.
Cool beans.

So far I've been getting a handful of clicks to my Blogger blog from here, which has been kinda cool.

And thanks for the nice comments. My godfather has been pushing me to write a book about my illness experience and I probably will at some point (at least, should I ever get to be awake for more than a few hours a day). It feels like there are so many illness memoirs out there, including from those with ME/CFS (Floyd Skloot, Susan Griffen, Peggy Munson, Dorothy Wall to name a few) that I haven't been rushing to add to them. For now I just focus on writing as therapy. ;-)

I have a couple of Dorothy Wall's books (which I bought many years ago before FM & chronic ill health).

Are you saying that she has CFS?


forgot to add........

Have you thought of writing a "memoir" incorporating the rest of your life (ie before illness) as well.

As you say, there are so many books out there relating the whole chronic illness experience.

You are such a skilled & entertaining writer, perhaps you could write your story from a different perspective, or dare I say (add in a bit of fiction as well as the bare bones of illness).

Yes Dorothy Wall has MECFS -- see her website.

I've actually been writing a novel that is thinly veiled autobiography (aren't all first novels?) and I've been thinking about extending it to include the first few years of illness. I just haven't figured how I want to do that yet.
Michelle, I commented to you directly on your blog awhile back, but thought I'd say again here that I really enjoyed this entry. You definitely have a great talent for writing! Looking forward to that novel of yours someday soon. :)

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