Moving Right Along

Life's Unfairness Means Sometimes the Maid Just Isn't Coming, Mostly Because She Doesn't Exist

The truth is that unless you are one of those fantastically rich cripples I keep reading about in romantic novels, even after you have had your mobility somewhat to severely curtailed through misadventure which may not even have been any fault of yours, it is likely that you will still have to clean your bathroom from time to time.  Sorry.  I was bummed to discover this, too.

The fact is, cleaning the bathroom is a hateful task for everyone, regardless of disability status.  It is because of this that I know my quest for tools to make the process easier will not always be in vain.  Perhaps you can help.

Here's what I've tried:

• Scott brand green and yellow scrubby thingies with one sponge side and one rough green side, some hot water, and some Ecover orange cleaner
• Chore Boy blue scrubby thingies with sponge on one side and kind of a metallic plastic mesh sewn over the other, a series of washcloths for mopping up after, and some hot water
• Clorox toilet wands with the soap-loaded disposable heads
• Mr. Clean "MagicReach Easy Top to Bottom Bathroom Cleaning" gadgetry, as seen on TV
• Swiffer wet mops
• My boyfriend with a bucket, a mop, some Scott brand scrubby thingies, a bottle of Ecover orange cleaner, and some Bon Ami cleanser, as he may deem appropriate

As you might surmise, that last option is by far my preferred toolkit for just about any cleaning task involving soap, water, and scrubbing.  However, in spite of my potentially melodramatic status as a cancer patient and an amputee, which, I agree, rightfully should translate into a free pass to lounge on the couch eating bonbons 'til the furniture collapses under me, that last option is not always available.  So let me tell you about my experiences with all those others.

First, let's talk about smell.  Or rather, please allow me to scream about it a little.  Are these cleaning product manufacturers homicidal?  I found the mere "fragrance" of both the Swiffer brand wet mops and the Mr. Clean "MagicReach" pads undeniably toxic.  Opening each package made me dizzy and gave me a headache.  If I were the eensiest bit more frail of constitution, I'm quite sure I would have fainted.

Now, despite my adamant, almost militant embrace of strictly natural, biodegradable cleaning products, the reason I indulged in either of these things should be quite obvious.  When one weighs slightly more than a sylph, when one is slightly older than young, and one only has one knee left and that knee does not still possess its original complement of cartilege, said knee is not at its happiest supporting one's weight on a hard, linoleum-coated floor while one attempts to scrub.  When one only has one leg that will bend and unbend at will, one does not want to be hopping around with a sloppy wet mop making an already slick-ish floor downright soapy, either, not even while wearing a fake second leg.  Trust me, involuntarily falling into the splits while wearing a suction socket just doesn't result in anything one wishes to experience.

Accordingly, one tends to get kind of excited when one sees advertised on television products that promise to ease this process, to eliminate the whole part about doing anything balanced on one aging, barely cartilaginous knee, and to provide extended -- and adjustable! -- reach into crevices dim and daunting.  So, yes, I'm weak, I'm not willing to risk my life or ruin my remaining knee scrubbing, and I succumbed to advertising in spite of my principles about the environment.

It's not all terrible, though I'd like to see the manufacturers think about the meaning of "disposable" a little more.  The Clorox toilet wands are truly a miracle from heaven in terms of their effectiveness at cleaning and sanitizing even the most neglected potty while also minimizing the gag factor.  Unfortunately, over and above the landfill potential presented by all those little "disposable" scrubby plastic heads being disposed of and not recycled by the millions each year, they dribble strong blue chemical drool everywhere, so you will have to mop up outer surfaces with a cloth, and since washable, reuseable cloths don't come on a stick, at least not as far as I'm aware, that means more bending over precariously on one leg or crawling around on one knee.  Also, I love my Swiffer duster with the adjustable reach even though the fact that the disposable dusting bits do not appear to be biodegradable kind of enrages me.   And I adore even more my Swiffer carpet flick, which uses sticky paper which is biodegradable.  However, I will never buy a Swiffer wet mop again, even though my boyfriend thinks it's a great product, and I still assert that he thinks this mostly because it was hard to tell that one day he used it whether his asthma attack later on that night had been set off by the mop's presoaked cleaning liquid's fumes or from all the dust and mold he'd kicked into his unmasked breathing passages while cleaning elsewhere earlier in the day.   I only know that I cannot take the fumes.   For this reason alone, I will not be buying any refills.

I will also not be purchasing any refills for my Mr. Clean "MagicReach" system.  People of Swiffer, people of Mr. Clean, hear me:  there is a difference between a tiny amount of genuine, natural citrus oil and an oily cloud of artificial fruit smell concocted in a lab in New Jersey.  If the product smells so bad without it that you think this makes it smell better, I am terrified of what might be in your product and cannot believe it is healthful or safe.  I know that the stench of the product after you have added "fragrance" is neither healthful nor safe for me.

Nevertheless, this evening I had to clean my bathroom, and the Mr. Clean product is what I had on hand, as well as a Chore Boy sponge, some washcloths, a Clorox toilet wand set, and lots of hot water.  So once I realized that I was not going to die today from the Mr. Clean fumes, I decided to see if the product actually worked.  All I had to lose was the filth on my bathroom floor and the mildew-and-soap scum nastiness that has accumulated in our shower/bathtub.  Oh, and maybe some lung capacity. 

The "MagicReach" system itself was unsatisfactory because the cleaning "slippers" simply would not stay on the pad.   They would not.  The instructions were followed.  The product failed to conform to expectations set up by the instructions.  This meant the stinky, drippy, and now filth-encrusted cleaning slipper was left behind in some rather unpleasant and awkward places, like behind the toilet.  I had better luck sticking the slipper over the point of the boot on my living foot and using that to scrub.  If we had a large bathroom, that would have meant that I would have had to either use a wheelchair or only clean the perimeter, because due to physics as yet beyond my control I cannot stand unsupported on my prosthetic leg alone, so I had to brace myself on various parts of the bathroom architecture to get enough of a support base to really scrub.  However, in the interest of fairness, it is worth noting that since we have a terribly small bathroom, this worked quite well.  The cleaning slippers designed for floors do seem to clean a bathroom floor very effectively, even though they leave behind a residue of chemical stink.

The slippers designed for cleaning tubs and showers were less effective.  We do not have tile and porcelain.  In this apartment we rent, the top half of a Victorian house, the bathroom walls are painted wood and plaster.  The shower/bathtub unit is made of plastic and the joins are not caulked.  The floor of the unit, the tub bottom, is pebbled for traction.  We get some serious mildew and soap scum buildup.  Neither the Mr. Clean "MagicReach" slippers designed specifically for tubs and showers nor the ones designed for floors worked especially well, though the rough ones designed for tubs and showers did better.  Scrubbing very very hard and for quite a long time, I was able to remove some stains from the smooth walls of the tub.  I was not able to remove all of them, and I was not able to remove any from the pebbled surface on the bottom.  Since neither type of slipper would stay on the "MagicReach" pad, I had to get down on my hands and knee, put the slipper over one hand, and scrub that way, which of course is exactly the scenario I had sought to prevent in purchasing the "MagicReach" system.  The minimal effect of my hard work using this method took tremendous effort.  I achieved roughly the same results using the Chore Boy blue scrubby thingie and hot soapy water.  And the Chore Boy, though also not biodegradable, was not soaked in chemicals.

Now, in my happy, happy experiences using my boyfriend to do this kind of job for me, the Ecover orange cleaner (strong enough to clean an oven easily and nontoxically, by the way) gets the floor shiny clean and fresh smelling with a mop.  In our previous apartment, the tub was porcelain, and the walls were lined with porcelain tile, so the Ecover worked on that, too, with a sponge or scrubby thingie.  This plastic stuff our current tub/shower unit is made of is kind of fragile, easily roughed up.  Wherever it scars, things grow, things that are hard to clean away later.  But the nasty mildew and soap scum will not come off of every part of it without some abrasion.  My boyfriend promises to take another whack at the tub some other day using some other product combination.  I will report on his success, if any.

But again, the boyfriend solution is ultimately unsatisfactory because it still means someone with impaired mobility cannot easily clean her own stinky bathroom at her own convenience.  After mostly good experiences with Swiffer products and the Clorox toilet wands, I had such high hopes for the Mr. Clean "MagicReach" system.  I am truly appalled to report that it failed me in almost every respect.  It wasn't magic, and it didn't reach.

I am not without hope for the future, though.  Inexpensive, adjustable-length tools with disposable cleaning surfaces that firmly attach are a great idea, and I am thrilled that people are at least thinking about them, and trying to make them.  I would like to hear from anyone who knows of something similar, some product or system that has an adjustable reach, but one that really works, one where the cleaning surface really stays on, and one that, unlike a good old-fashioned mop, doesn't require use of a bucket full of dirty water upon which to trip. I would especially like to hear about biodegradable products and products that don't involve horrible chemical smells.  (Or horrible natural smells.  Honestly, the good clean smell of vegetable-based soap is just fine with me.  And vegetable-based cleaners do not have to be wimpy, as Ecover has proven.)

My knee, and my boyfriend, will appreciate your input.

Too Tired to Talk of Love

Love Thursday has come again, and I am too tired from the day-to-day, everyday work of life, though it may also be the work of love, to construct a nice essay about some facet of love, some kind of love, someone I love.  Instead, I offer you this old Chinese poem, right on topic:

Behind a vermilion gate, on the eve of the Skills Festival,
come the seething sounds of merriment;
A farmhouse stands quietly in the evening,
its thatched door shut:
When a boy is good at herding
and a girl knows how to weave,
There's no need to invoke blessings
from stars that cross the river.

-- Fan Ch'eng-ta, 1126-93, translated by Irving Y. Lo, excerpted from Oriental Love Poems, compiled by Michelle Lovric (2003, Andrews McMeel Publishing, Kansas City)

Happy Love Thursday!  I hope whatever the metaphor of herding and weaving stands for in your life carries on smoothly, skillfully, and joyfully -- even if making it happen is wearing you out.

Search Engine Grab Bag: Stump Shrinkers and the Odd Scrap of Hilarity

(Odd scraps of search engine hilarity will be listed at the end of this post.  You can skip to them directly by clicking here.)

Awhile back, some people came to this site via the following queries, which I have translated from search language to English:

• When is the right time to start using stump shrinkers?

• I need help.  I am an amputee above the left knee.  What kind of shrinkers are there out there?

I got another query recently which happens to be kind of related:

• leg stump massage

Hey, I can take a hint!  So let's talk about this a little.

First, you should know that I have very limited experience with this, strictly my own.  Your prosthetist and/or physiatrist can tell you more, as can a physical therapist with lots of experience with amputees.  Your surgeon may know less than I do.  Though a very good surgeon indeed, mine knew less the last time I saw him than I know now, and didn't interact with me long enough or often enough after my surgery to give him any opportunity to learn more.  So, as usual, I am happy to share what I've learned, but you should not view mine as the last word on the subject, okay?  There is much, much more to know.

Second, on the off-chance that anyone reading this doesn't know what a stump shrinker is or why anyone would want one, let's review briefly.

Upon amputation of a limb, even therapeutic, planned amputation (as opposed to traumatic amputation through misadventure such as war or a car accident), the body goes a little nuts.  Any residual limb, which is a fancy term for "stump," will begin to swell like crazy.  Though this is a natural defense process of the body, past a certain point it's not actually helpful.  Unchecked inflammation can cause damage all by itself, as well as discomfort, both of which can complicate healing, and new stumps don't really have a lot of power to drain themselves.

On top of that, the process of shaping the stump begins immediately.  This can be an active or passive process; it will happen whether anyone steps in to guide it or not.  It's far better that an amputee and his/her medical team should approach it as proactively as possible, as soon as possible.  This way, once the wound has healed, the amputee has a better chance of ending up with a stump which is comfortable, not prone to irritation or infection, fully alive (as opposed to dying and rotting from the inside) and well circulated.  The amputee likely also will desire a stump which will be able to fit well into a prosthesis.  For example, a stump with "dog ears" (little flaps that used to be the corners of a seam of sutures) will be prone to irritations and infections and will not seat comfortably within a prosthetic socket.  A smoothly rounded stump is far less likely to experience these problems.

Accordingly, proactive shaping via compression and shrinkage all begin with the initial bandaging after surgery.  The bandages are wrapped as tightly around the body of the stump as possible to prevent the fluids which are inflammation from accumulating in the stump in the first place.  Swelling happens anyway, of course, but this first bandaging moderates the process.  Still, the stump will usually swell so much immediately after amputation even within a tight dressing that friction of the skin against the bandages as the skin expands will be sufficient to cause major blistering.  (I pretty much had one giant blister encompassing my entire sutured seam.  Individual blisters ranged in size from dime to quarter.  It was truly gross, and when my surgeon popped and debrided them during my first office visit after leaving the hospital, I found it far more painful than the amputation itself.)

Every time the dressing is changed, the compression must continue.  Once the wound has healed well externally, more aggressive steps can and should be taken to promote further healthy shaping.

The two methods I used to control and eliminate inflammation through compression were stump wrapping using ace bandages and stump shrinkers.  You can follow the method of stump wrapping I followed by visiting this very useful illustrated tutorial:

"Fitting the Prosthesis," a chapter from A Manual for Above-Knee Amputees, by Alvin L. Muilenburg and A. Bennett Wilson, Jr.

Instructions for transtibial (below-knee) amputees can be found here:

"Preparation for Fitting the Prosthesis," a chapter from A Manual for Below-Knee Amputees, by Alvin L. Muilenburg and A. Bennett Wilson, Jr.

(I regret that I have never seen comparable instructions online for upper extremity amputees, but perhaps the people who run the site UpperEx.com can help you find something, if that's what you need.)

As the surgical wound heals, this type of compression is better at first than a stump shrinker because donning a stump shrinker can involve manhandling the end of your stump a little bit to a lot.  It's like putting on a very tough, very tight, very thick support stocking.  You can't really get one on well if you still have stitches, seepage, blisters, etc.

Once your wound has sealed itself, you will be encouraged by a good physical therapist to start unbinding and massaging your stump vigorously, several times a day.  You want to do this.  Your circulation has been rerouted.  This is one of the reasons edema (swelling) cannot subside easily on its own.  Massage will help.  Massage will:

• encourage healthy circulation of bodily fluids through the stump, thereby encouraging tissue to heal itself, remain healthy, and stop swelling up;
• help you integrate the new shape of your limb both sensorily and psychologically;
• help you combat phantom limb sensation;
• help you toughen up your stump so that it can become strong and able, which will be necessary whether or not you plan to employ a prosthesis because you don't know what else life is going to throw at you, but will be especially important for your success if/when you do wear a prosthesis.

Naturally, you have to start sort of gently, but a good physical therapist will show you the technique and let you know when to amp it up at the appropriate times in your rehab.  If you cannot reach and manipulate your own stump well enough, the physical therapists will do it for you and will also happily show other people in your personal recovery team -- your spouse or significant other, for example -- how to carry on with it at home.  Massage may include not just manual manipulation but also, once the wound has healed sufficiently, tapping on the end of your stump with a spoon wrapped in washcloths held on by rubber bands or some other object similar to a soft mallet.  Again, the point of all this is not to torture you but to help you heal, it doesn't always feel bad, it starts to feel rather good after a certain point, and it usually works.

Your physical therapist will take regular measurements of your stump.  When your wound has healed sufficiently, and when your swelling has reduced sufficiently, your prosthetist will try to fit you with a stump shrinker.  If no complications arise, this, I am told, usually happens within a month of surgery.  I can't remember now how many weeks after my surgery I got my first shrinker, but it was after my wound had completely healed externally.  My blisters were mere scars.  My stitches had been absorbed into my body.  There was no seepage from anything.  Also, as it turned out, most of my swelling had gone away.  There were still a couple of inches to go before I would achieve my "permanent" shape (though, honestly, there is no such thing as a truly permanent shape).  It was felt by my team, as it is apparently normally felt by most teams at this stage of recovery, that a shrinker would help me get to a stable, healthy shape more quickly than just continuing with the ace wrap.

The brand of shrinker with which I was presented was a Juzo.  I do not know if there are other brands.  I imagine there must be, but I have never seen any or researched this.  The type with which I was presented looked like the "Varin Soft-in" model.  (Obviously, it looked a little different on me than it does on the gentleman modeling it at the Juzo site.)

Because the office of the prosthetist I chose was located very far away from my home, could only be reached after a long drive, and no one was available to take me there at the drop of a hat, when it came time for me to start using a stump shrinker, my physical therapist so advised my surgeon in writing, my surgeon checked my scar, then my surgeon gave me written approval for my prosthetist's file, and then I called in the measurements my physical therapist had taken to my prosthetist's office.  After that, my prosthetist mailed me my first shrinker.  On my physical therapist's advice, I took the shrinker with me to my next visit with my surgeon, which I believe was actually my last visit.  I attempted to don it in front of him after he checked my scar one last time.

My surgeon was puzzled as to why I wanted to try my putting on my shrinker in front of him, but said, "Uh, okay," when I proposed it.  He had no useful input to give.  I struggled to get the garment on.  I grunted, huffed and puffed, and flushed.  It was very tight and very firm, and I was very afraid of hurting myself while donning it.  I didn't know how it was supposed to fit.  He didn't know how it was supposed to fit, either, which shocked the heck out of my physical therapist when I told her later, and though we were both kind of embarrassed, he seemed to think this might all be perfectly normal, as was my assumption.

Now, I am an American woman, and therefore I have been wearing constrictive, uncomfortable, elastic garments on various parts of my body since my early teens, at least.  I wouldn't know if something like this was unhealthily tight without being able to see my flesh turning blue or having my breathing so impaired that I got dizzy.  Juzo stump shrinkers are nearly opaque, so you can't see the color of your stump's skin while you wear one.  Also, who breathes through a stump?  The only clue I had that this shrinker was too small was when I removed the shrinker and my physical therapist saw the red marks it left around the top of my thigh.  It turns out I had been sent a size 2 when what I really needed was a size 4 or 5.  The external package had been incorrectly matched to the contents.  However, because of the way I was fit, by mail and without meaningful supervision until I'd been wearing the thing a few days, no one caught the error.

I am told that most people, most men anyway, can feel when these things are too tight because they cause discomfort, including throbbing.  I was already uncomfortable, having just had my leg amputated a month before, and never experienced throbbing.

No harm was done.  I received a replacement at no additional charge to my insurance company.  Now the difficulty was getting the right fit.  Size 4 was too short.  Size 5 was too loose.  And I may be misremembering; it may have been that I tried sizes 3 and 4, not sizes 4 and 5, but it doesn't matter.  The point is, every stump is unique, a perfect fit may not be had by everyone, and I certainly never experienced a perfect fit although I ended up using three different sizes of shrinker.

Since the goal is to eliminate all edema from the stump for its health and also so that the stump can be well fit with its first prosthesis, the patient must wear the tightest shrinker s/he safely can.  Circulation to all parts of the stump of healthy bodily fluids (e.g., blood, lymph) must not be impeded.

Now, the way it's supposed to go, the way it goes for "normal" amputees, that is, men with no complications, is that the amputee is given progressively smaller sizes of shrinker over a period of weeks or months, as the stump shrinks in a smooth progression.  This is not how it went for me.

As a woman, as I have noted elsewhere on many occasions, I have completely separate issues with water in my body, and I am a different size and shape every single day of the month.  Sometimes the smaller size shrinker was intolerable for me; sometimes the larger size was ridiculously large to the point of uselessness; sometimes the only shrinker which felt both comfortable and effective was the teeny-tiny one I'd been initially sent by accident.

Possibly because I'm a woman, or more likely because every stump is unique and not a perfect stock size, not only did I never achieve a perfect fit, I was also never perfectly comfortable in any shrinker.  The Velcro waist strap that held the shrinker on was too long and scratched me, even after I cut it down.  On the larger sizes, the top hem of the garment would not stay in place at my crotch but kept riding down creating a little blub of flesh out the top.  (That blub issue isn't just a woman thing, either.  You can see such a thing happening on the model in the picture at the Juzo website linked above.)  The garment would chafe around that blub. Also, my skin does not tolerate synthetic fibers well, so I got a rash from the shrinker if I wore it too long, even though I kept them all and my skin very clean.

I found that I preferred to continue the ace wrap except when I left the house.  The ace wrap continued to work well at home.  Not only could I customize the fit more closely to my personal dimensions, but the ace bandages allowed my skin to breathe a little better.  Also, my prosthetist felt the bandages were better for me to sleep in than the shrinkers.

The bandages were very expensive and not covered by insurance, though, whereas the shrinkers were about $40 apiece and totally covered.  Also, the bandages lost elasticity with every washing, which made it progressively harder to get a tight enough bind to be effective, and we were too broke to buy more.

I found the shrinkers stayed taut through many washings even after several developed runs, like nylons.  Also, I found shrinkers better for leaving the house for one reason more than any other:  you do not want to be fussing with bandages and clip fasteners in a public restroom on one leg.  You don't.  Take my word for it.

A shrinker such as the type I wore is sufficiently unobtrusive in its design that you probably won't have to take it off or move it around very much to toilet yourself without getting anything nasty on it, whereas bandages can come undone and trail into places such as a toilet bowl.  And then what do you do with it, right?  Bandages can come undone when you're not on the toilet, too.  Those little prongy clips are not exactly high endurance fasteners, and no matter how tightly you bind yourself, all those strips of elastic strap can move in an assortment of directions as you move through your day.  You don't want to be digging around in your pants adjusting your bandages while you're crutching or wheeling around a bookstore, right?

So for leaving home, a shrinker is a tremendous convenience.  It's one, neat piece that mostly stays where it should, most of the time.  You can keep constant pressure on your stump, keeping up the edema fighting every minute, and not have straps and hooks ready to fling themselves away from you at the slightest bump.

Once you are fit with a prosthetic, the socket will provide pressure on your stump, and your stump will continue to shrink partly from continued lessening of edema but also from loss of tissue as it atrophies.  It may be suggested to you, as it was to me, that you should continue to wear a stump shrinker when you are not wearing your new prosthesis to help speed along this process and to prevent swelling from reoccurring.  Because it was so uncomfortable, and because I stopped seeing any benefit, I chose to discontinue my use of both shrinkers and bandages about four or five months after amputation.  Your rehab team will make recommendations to suit your individual case, and you will have to make choices based on your own experience.

After you have a working prosthetic, you will continue to lose muscle mass in your stump as you use the various cut and reattached muscles in different ways than you used to, if at all.  This is natural.  This is part of why you will probably go through several prosthetic sockets in your first year post-amputation.  Throughout your life, your stump will change shape, too, just like your face and your torso, just like any person's body changes with age.  Things shift with time and gravity.  That's life.  So there will be no truly permanent shape to your stump, ever.  The most dramatic shaping usually happens in the first year after amputation, however, and part of it is in your hands, which is why you will use massage, ace wrapping and/or stump shrinkers as your team advises, beginning immediately after amputation.

Okay, now, as promised, for the Odd Scrap of Hilarity, four to be precise:

In the last few months, I have been visited by guests arriving here through the following search queries (translated into English):

• Who made Gene Wilder's purple Wonka coat?

I have no idea, but IMDb.com lists the costumer of that film as one Helen Colvig.  It doesn't say whether she actually manufactured the garment with her own hands, but my, didn't he look fine in it?  Mmmmm-mmmm.  And don't I want one just like it but in my size to this very day?  Oh, yes.  Yes, I do.

Next query:

• sexy prosthetic feet

Yeah, good luck with that, and no, I don't want to hear about it.

And next:

• the woman who paints with her boobs

Not me; that's all I know.  Not enough control, you know?

Finally, I received this gem:

• [JANE DOE] IS A BITCH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Wow!  That's not a search query, is it?  That's a publicity statement.  "Jane Doe," of course, is not the name of the person this "searcher" purported to seek.  The "searcher" was brought to this site through this "query" because the actual name of "Jane Doe" appears in one of my posts.  I will not say which one or who it is, because I do not know the woman personally and refuse to perpetuate any assertion about her character or personality without knowing whether it's true.  I was, however, vastly amused by the ingenuity of using a search engine to spread dirt about somebody.  So clever, and yet so juvenile.  And yet, really, so clever.  'Cause now I've got to wonder if this person really is a bitch.  Sorry; I can't help it.

Incidentally, the "searcher" did in fact use exactly that number of exclamation points.  Honestly.  In case the chain of them gets cut off by my margins, I count 104.  That's a lot of exclamation.

Okay, that's it for this edition of Search Engine Grab Bag.  One way or another, I hope everyone who reads it finds it, uh, enlightening.  Yeah, enlightening.  Sure.

She Would Have Been 75

One of the things I love best about the Disability Studies blog of Temple University is when Penny notes the birthdays of interesting, accomplished people whose lives relate to disability studies for some reason or other, either because they themselves are/were disabled or because they have achieved something in the field -- sometimes both.  Penny's tribute to author Jane Yolen today reminded me that this is also the birthday of my late mother, Stephanie Cooper, who was bipolar and arthritic, and also, as I have mentioned countless times, a brilliant artist and my first, best teacher.  She would have been 75. (Examples of her work appear throughout this post.  Click on each image to see a larger version in a pop-up window.)

You might think it odd that I could forget her birthday until reminded of it by something so completely random.  Usually in the past 15½ years, this has been a miserable day for me, a day of guilt and loss, not a day I could forget.  My mother died homeless and alone, you see, and by her own hand, all of which is partly my fault, and the end of a long, complicated story I can never hope to tell adequately.

This year, finally, I miss her and am still sorry, but feel at peace.  I think it's partly because I don't think she would have lived much past 70 in any event, because people in our family usually don't.  It may also be because this year I made an anonymous donation of some handmade winter gear to a local shelter for homeless women.  It's something she taught me to do.

Below is a portrait of my mother which I created for an art school assignment the year she turned 50.  (Click to enlarge, of course.)

She loved this portrait.  She felt it really captured who she was and where she was at at that time.

This next image is a portrait she made of me from a photo she took when I was 16, from memory, and from her ideal image of me having a happy day.

It's good.  It's true, which is what she insisted was the most important thing about any work of art, that it should be true.

Part of the truth is that she is in the picture, too, just out of frame.  Like now.  Like always in my life.

Look, I don't believe in any kind of god or afterlife, and I don't believe she can hear me if I talk to her.  But I also don't believe I know everything, so on the off-chance that I'm wrong about this, happy birthday, Mom.  I hope things are better where you are.

Of course, part of where you will always be is wherever I am.

Yes, still.  Thanks for that.

I Love Tuesdays!

I know, I know; it's Thursday, Love Thursday at that.  But you know what?  Yes!  I love Tuesdays!

Tuesday has long been my favorite day of the week.  During the approximately 300,000 years of my life that I spent working for lawyers, Mondays were horrible for obvious reasons.  (Really, you don't know why?  Please.)  Fridays I always worked late because of all the things that had to be tied up before the end of the week.  Thursdays we had to deal with all the people we needed to reach or who were in a panic needed to reach us before the week ended.  Wednesday was usually when complications of a beautifully organized week going swimmingly since Tuesday morning would begin to rear their ugly heads.  A Saturday when I didn't have to work I'd sleep, yes, all the way through to its companion Sunday, and Sunday was always filled with chores I hadn't done on Saturday plus dread over the looming Monday.  Unless I was working Sunday, too.  And then Monday, without clean laundry or sufficient rest, would be a compound hell beyond even the expectations of any regular Monday.

So what did that leave?  Yes!  Tuesday!  Beautiful Tuesday!  A clean day.  All the nastiness of Monday, all the emergencies which arose over the weekend or left trash on my desk as they passed by while I was gone (if I was gone) had been cleaned away.  No one was losing his mind with stress about the week ending without his needs having been met, not yet.  Tuesday.  Almost the whole week ahead with the very worst part over.  Me and a neatly organized calendar, with neatly organized stacks of easily accomplishable tasks, a cup of coffee (or five), and a quiet phone.

Ah.  Tuesday.

I am super-happy to tell you that I have not worked in an office in, shoot, nine years.  Really, so very happy.   I had my own business, a freelance graphic design studio out of my house for four years, and that meant I worked all the time, straight through, from the time I got up to the time I crashed, eighty or more hours a week.  My week had no terminus, no weekend, so days of the week and weeks of the month as any kind of real division became meaningless, except for billing cycles.  Then I went to work for Whole Foods for four years, where I worked late afternoon-to-evening shifts mostly Thursdays through Mondays.  Now I'm at home working on this novel. 

Do you know what's very strange?  It doesn't matter.  All along, even without a M-F, 9-5 office to go to, Mondays have still been Mondays, oh yes, in every way.  (Well, there haven't been so many compound-hell Mondays, not by a longshot.)  Fridays have still been Fridays.  Even now, with no structure to my days or weeks that I do not impose upon myself, it's all the same.  Saturdays are tired..  Sundays are busy with chores and worry about what each coming Monday will be like.  Mondays, even Mondays when I stay home and do nothing but read books, still manage to be Mondays. 

I suspect this is because the rest of the world is still following the classic Monday-Friday work week.  I think there's just no bucking the dominant order of things, not completely, not alone.

The good news is that Tuesdays are still delicious.

Tuesday at Debra's Natural Gourmet in West Concord is called Organic Tuesday.  Tuesday is when the already cramped and tiny store stuffs itself even further with table after table of gorgeous organic produce.  Yes, even in February.  I'm severely claustrophobic, and seriously, that is a very tiny store with very odd, narrow aisles.  I shop there anyway, on Tight-Squeeze Organic Tuesdays and everything.  That's how great it is.  I have to work very hard not to be a complete jerk to everyone else shopping there at the same time, because it's not their fault I can't breathe and my head is spinning.  That's probably good for me, even though it's not easy.

I visited this week so I could get some organic frozen produce, actually, and also to see what else on my list I could pick up there.  On top of the frozen supersweet corn, broccoli florets, and petite peas, I walked out with a beautiful box of cherry tomatoes and two gorgeous cucumbers.

In line ahead of me was a hospice nurse who happens to be the sister of someone who still works at the Whole Foods I quit in September.  She recognized me.  She talked to me of love, of how she has held newborns and dying people, of how the space of a life is just a minute and then it's gone, and if you don't love somebody in that minute, then it's all been for nothing.  She told me she loved her job, that it didn't feel like work to her, and that she couldn't believe she got paid to do it.

On my way back to my car, I was faced at the curb with what happens here at curbsides between snows:  englaciation.  There hasn't been much snow this year, and between the latest snow and this Tuesday I don't think the temperatures were ever much above freezing, so it's not like there was a sheet of slick ice between the sidewalk and the road.  There was just this one very long footstep's width, wider than my fake knee can safely accommodate while stepping down, over ice that was pitted but not necessarily rough under a shoe sole, and I wouldn't know where it was slippery 'til I applied some weight to it. 

I was wearing my beautiful black boots.  This was the first time I had worn them outside on a day with ice to traverse.  Though they do have some traction, which is what lets me walk in them on carpet, I didn't know if it would be enough to allow me to step onto this ice and not go flying into the street or butt-first onto the englaciation with all my groceries flying.  So I went verrrrry carefully.  Rather than test things with all my weight on one foot, I leant forward 'til I was supported by the hood of my parallel-parked car.  Then I stepped onto the pitted englaciation of the curb, and then into the completely ice-free street.

While I was strategizing, leaning, and ever so gingerly toeing into this process, a cheery voice behind me called out, "Need a hand?"

"Ha!  I need a brain," I replied.

"Okay, then!" said the voice, clearly unsure whether or not I was being hostile. 

I turned around and grinned at the lady from whom the voice had issued.  She, too, looked like a nurse or other health care worker; she was wearing one of those snap-up poly/cotton smocks in bright pink like a cardigan over what looked like a cheerfully decorated scrubs top.  "I don't suppose you have an extra one of those on you?"

"Afraid not," she replied with a relieved grin back. 

"No one ever does," I mock-sighed.  I explained that I needed a brain so I would remember to wear shoes with whose depth of traction I was already well acquainted before leaving the house on an icy day.  We laughed.  We wished each other a good day.  We went our separate ways.

This, by the way, was a perfect interaction between a putatively disabled person and a stranger, not because I cracked wise and she laughed (eventually), but because, seeing the putatively disabled person having obvious difficulty, the stranger offered help, but took no offense when the offer was refused, nor did she urge the putatively disabled person to reconsider, nor did she attempt to throw guilt upon the putatively disabled person for refusing.  Also, the putatively disabled person understood the offer as an attempt at kindness and certainly did not get mad at the stranger for offering.  At no time was pity effused, only honest human compassion practically expressed.  At no time during this interaction was anyone physically threatened or even the slightest bit impeded by anyone else.  Does everybody see how easy this is?

Okay, enough on that.  Moving right along...

Tuesday continued to be its usual lovable self.  I got everything done that I needed to do.  I even made muffinettes (strawberry-corn; recipe and photos follow).  And then I had a big adventure!

I know I've mentioned that I hate driving, that I really hate driving.  Oh, and I'm bad at it.  Oh, and I am really, really bad at it at night in New England, where we do not have (IMO) sufficient barriers between different directions of traffic on highways nor -- though I do like not having to live with the level of light pollution I got used to suffering in L.A. -- sufficient streetlights.  I can hardly see a thing, what with the glare of oncoming traffic and the really dark darkness against which I can't use my highbeams because of the oncoming traffic that isn't blinded to my headlights by proper barriers.

However, as with everything else, there was something I wanted to do in Cambridge, and I didn't want to spend six extra bucks and stand on outdoor platforms in strong winds and temperatures below freezing waiting for trains, so I sucked it up.

It was Tuesday!  So everything went perfectly!  Of course!

Well, you know, perfectly for real life.  People still drove terrifyingly poorly on Fresh Pond Parkway and Massachusetts Avenue.  But, look, nobody got hurt, at least not in front of me, I made it where I was going with time to spare, and as far as I'm concerned, that's pretty perfect.

There was even a parking space free right in front of Porter Square Books, my destination.  Also, I had enough money to buy Patry Francis' very first ever published novel, The Liar's Diary, and a cup of tea.  I was burbling over with spazziness from the brief but hair-raising rush-hour drive, so I sat in a corner of the café to wait for Patry's reading to begin.  And that's when a very nice gentleman who appeared to be some mathematical or scientific smartypants type from India said "Hi," and started chatting with me.   (I base my assumptions about Mr. Smartypants on the work he had spread before him and his accent.  I could be wrong on all counts.)

Mr. Smartypants began to tell me a little story of his day.  "You know that song in the Maria Sharapova commercial?  Well, this morning, I was walking around my office singing it and I didn't even realize it."

"Ugh, they get into your head, don't they?"

"Yes, and my office is all cubicles.  So everybody heard me as I wandered around singing, 'I feel pretty, oh so pretty,' to myself.   But they didn't know I got it from the commercial."

"Awesome!"  I laughed.  "You know what, though?  Why not proclaim it to the world?  If you've got it, flaunt it!"  I meant, if you have a positive attitude, why not flaunt it, but I'm not sure that was communicated.  "So, did you wear the serious, psych-out tennis face while you did this?"

"No, honestly, I wasn't even conscious I was singing it."  We laughed some more.  "So, did anything interesting happen to you today?"

"Well, it's about to.  I'm here to listen to an online correspondent read from her very first published novel ever.  I'm her official internet stalker.  We've never met in person before, but I'm very excited for her.  She's worked very hard for this and is an excellent writer."  I looked up for a moment and noticed Patry had come in and that it looked like people were gathering in the back of the store, where seats were arranged facing a mike.  "And now, I think I should head back there, because it looks like they're setting up.  Nice talking to you.  Cheers!"

I think there were about eight people gathered to hear Patry, including her husband and the store manager or owner, so it really turned into more of an informal chat.  There was a sense of everything being brand new, of breaking new ground, of hope.  Two people who'd shown were cousins, and two people were friends, and there was one woman who had just wandered in off the street and didn't even know what a blog was, but was very excited to learn about that, as well as to hear about Patry's book, her history as a writer, her process -- and to discover that her local bookstore had live, in-store readings by authors at all!  It was a perfectly charming hour.

Hopefully, Patry will come and read in my town on the 24th, and hopefully I will be able to assemble a "Liar's Party" afterward at my home with tea and goodies and my most literary-minded local friends.  But for now, because Patry had mentioned once on this blog that she loves muffins, I'd brought her some of the little ones I'd made that afternoon.  Later I was relieved to hear that she and Ted (her husband, driver, photographer, roadie, and obviously avid groupie) enjoyed them on the train home. Of course they did!  Why did I worry that it could be otherwise?  It was Tuesday!  Nothing major could go wrong.  Muffins made on a Tuesday can only be enjoyable and enjoyed.

I had two more tasks to accomplish after this.  There is a wonderful taqueria in Porter Square, and I say this with all confidence despite never having ordered any tacos there.  It's maybe a hundred steps across the parking lot and down a back alley from Porter Square Books, in the same building with a Pier 1 or Crate and Barrel or some other yuppie home decoration emporium, and it's called Anna's Taqueria.  Anna's burritos are sooooooooo good.  My half-Mexican true love, who hates snow and ice and icy weather, and who had confidently lent me the car even though I'm a terrible, terrified driver, especially at night in New England, had requested that I bring him a chile verde burrito, so I marched over there and got one for him, plus a grilled chicken one with black beans and salsa for myself.  Then I remembered I needed butter, something I'd forgotten to pick up at Debra's, so I grabbed some at the local Shaw's.  And then I drove home.

And nothing terrible happened!  I didn't slip on ice!  I didn't crash on the highway!  I didn't accidentally melt the butter in my Hello Kitty backpack by stupidly putting it in there with the hot burritos!  See, it was Tuesday.

We ate our burritos, my true love and I, in the bay window of our little yellow living room, grunting companionably with pleasure, pausing only to wipe our chins when absolutely necessary, sighing with satisfaction afterward.  He went back to studying for his classes at Harvard Extension, so he can exponentially increase his own smartypants-ness, which is actually a somewhat daunting thought 'cause he's pretty damn huge in the smartypants department already.  I cooked and packed his lunch for the next day, checked my e-mail, and toddled off to bed a happy woman.

It had been a perfect day -- perfect for real life, that is.  My cats are still dead, the war's still on, I still have cancer, and there were some specific stupid and stressful things that happened to us on Tuesday, too, things I'm deliberately leaving out because in the end they turned out to be unimportant.  Overall, though, as real life goes, it was a perfect day.

Tuesday -- I love Tuesdays.  This is Love Thursday, of course, and that's not bad, either.  I wish you many happy ones, including this one, and many perfect Tuesdays, too.

Maybe these will help:

Perfect Tuesday Corn and Fruit Muffinettes

1 C whole corn meal
1 C flour
1 jumbo egg
1 t sea salt
¼ C evaporated cane juice
1 T baking powder
1 C 2% milk
¼ C canola oil
1 6 oz. bag frozen strawberries (defrosted, drained and cut into approx. ¼" pieces) or blueberries (still frozen)
turbinado sugar for sprinkling on tops (a very nice finishing trick I learned from Shuna)

1.  Preheat oven to 425°F.

2.  Whisk together corn meal, flour, salt, evap. cane juice, and baking powder until well blended.

3.  In a separate bowl, whisk together oil, egg and milk until thoroughly combined.

4.  Dump dry ingredients into wet and gently whisk together until everything has been thoroughly blended.  Gently stir in fruit until it has been distributed evenly through the batter.  Color streaks where the juice unevenly dyes the batter are okay; just try to work it so that every spoonful of batter has roughly the same volume of fruit in it.

5.  Grease up some mini muffin or, as I call them, muffinette pans.  Using a tablespoon (soup spoon not measuring spoon), fill each muffin cup with one heaping spoonful of batter.  Sprinkle every cupful of batter with a pinch of turbinado sugar for a tiny tad of extra sparkly-crispy magic goodness.

6.  Bake muffinettes 15 minutes.  Best served warm.

I made this recipe, which is adapted from my mother's recipe for corn bread sticks, twice this week, once with blueberries and once with strawberries.  I ended up with exactly 27 muffinettes each time. 

The blueberry version came out under-delicious because I made it on Monday with yogurt instead of milk (blech -- too sour, though well textured, such that the resulting muffinettes did make excellent vehicles for jam).  The strawberry version came out perfectly because I made it on Tuesday and did not use yogurt.

Note:  I recommend defrosting fruit that comes in larger pieces and chopping it up to blueberry size because if you don't, you end up with a number of muffinettes with cancerous bottoms, like so:

Now truly, this is the best kind of cancer in the entire world.  It is delicious, all gooey and caramelized around the edges.  However, wherever it occurs, it will complicate extrication of a muffinette from its pan.  If it occurs in the middle of a muffinette, the muffinette may split because the cake-to-goo ratio may not be sufficiently cake-y to provide any kind of structural integrity.  And even though you have greased your muffinette pan, when fruit cancers occur in the walls or bottoms of muffinettes, sticking will occur, and so will mess.  It's a minor point, however.  I can only say that I find muffinettes made with evenly distributed small bits of fruit far more equally luscious from muffinette to muffinette, plus way easier to plate and clean up after, any day of the week.