Fun facts to know and tell ...

1. Yes, contrary to all I felt to be true, one CAN "come back" from a four month crash.

2. WPI DID win $100,000.00 to further ME research.

3. My A1C is 5.4 ... this is very, very good news.

4. Despite the fact that I am NOT a nurse, I can "hook up" to my own IV quite easily now. Yes, six weeks of daily saline has done wonders. WONDERS.

I've not forgotten NJ but my heart and soul are in NY right now. An earthquake, a hurricane, and most recently a tornado.

OH.

Fun convos with the August birthday girl, my mom, during the recent weather(yes, we both had phone service.)

Me: Hi, Mom!

Mom: WHO IS THIS?

Me: It's your daughter (I'm her only daughter, btw, and her only child on this continent.)

Mom: WHO?

Me: MOM, it's Ruth. You remember me. I'm the PITA to shop with.

Mom: Ruth ELLEN! (As in opposed to her other daughters named Ruth?)

Me: Yes. How are the tremors?

Mom: Ruth Ellen, I am 84 years old. OF COURSE I HAVE TREMORS!

Me: Mom, you're in the middle of an earthquake.

Mom: Is THAT why the pictures are crooked?

Me: Probably.

Mom: Well, I'm in my blue chair and I have three gallons of wine on the porch.

Me: Got snacks?

Mom: Yes. Thanks for calling, dear.

-----------------------------------------------------

Me: Hi Mom!

Mom: Sarah?

Me: Do I SOUND like I'm calling from the Philippines? Is my midwest accent THAT bad?

Mom: RUTH! Why are you calling now?

Me: Hurricane Irene is heading your way. Got supplies?

Mom: I have wine and snacks.

Me: Mom, do you have any gallons of water saved? Batteries? Flashlights?

Mom: WHY? If it gets dark I'll just go to bed.

Me: Why don't you fill up the bathtub with water.

Mom: And soak in my own FILTH? I could NEVER understand what you see in that. Disgusting. Soaking in your own filth.

Me: Mom, it would be a water supply. All you have to do is fill the tub.

Mom: WHY!?! Drink your own bath water? RUTH ELLEN!! Were you raised in a BARN?

Me: Well, you raised me. You tell me.

Mom: Thanks for being concerned, dear. Really, it's very sweet of you but I won't be drinking my bathwater. Goodbye!

She's fine, btw. Nothing's gonna take her out.

The Circle of life -

Size matters. Or mattered to me as a young girl.

When living in NJ from ages 4 - 12 we lived about a half hour outside the city on an acre of woods. Yes, an acre ,,, also known as a kingdom, or princessdom, as the case may be. There were some strict rules regarding the access to and exploration of said woods ... as in I literally could not cross the line.

The line was actually the curve of the long gravel driveway which divided my backyard into unequal thirds: "the circle, the backyard, and the woods." I can't remember crossing the driveway by myself until I was at least ten. My mother never accompanied me on my jaunts across the line into the backyard and/or woods. It was my father who was my companion and guide. Being the early 60's this makes sense. My mom was probably in the kitchen whipping up some meatloaf and mashed potatoes (one green vegetable, one yellow) while my dad was in charge of All Things Lawn and allowed me to go into the backyard with him when he was cutting the "grass" which were really assorted weeds. The true grooming only took place within the sacred circle.

The circle itself wasn't even a circle, but rather a semi-circle immediately to the back of our house. It was manicured to within an inch of its life and was bordered on the driveway by a "garden" resplendent with ginko trees and perennials. To this day I can't pass a ginko without being transported to my back yard in New Jersey and have been known to pluck a ginko leaf from along the streets of downtown Chicago and sigh, "OOOH, a GINKO!" Because despite the fact that I am not a Fan of the Ornamental, ginko trees fill me with longing for New Jersey where Real Housewives did the laundry and took care of their children, and Real Husbands worn suits and ties, and took the train to work. It was within this very border that I fell in love with gardening and perennials, and harvested my first vegetables. I learned about co-planting and that marigolds had a purpose in life. I watched big fat black ants die because of their love of peonies. I had my first camping adventure there, stepped on my first slug there, and caught fireflies in old mayonnaise jars because everyone recycled by reusing. The circle was the first thing I saw when pulling up my roller shade in the morning, and the last thing I saw when pulling it down at night.

I loved it, and I hated it ... my perfect prison.

So about those "Editorial Comments" ...

My mother always said having a lot of time on one's hands can be a dangerous thing. Something along those lines "was the devil's play thing," Too much time? Too much thinking? Too much something.

Having been raised by introverts and being an introvert, I tend towards "thinking" anyway. Which in and of itself isn't a bad thing. Or a good thing. It just is.

But what one thinks about? What one dwells on? Now THAT can be positive or negative. Being a Christian by choice, and quite unashamed of the fact, I have to ask myself, "What Would Jesus Do?" Now there's a loaded question ... literally and figuratively. Politics and marketing aside, it really is a biblical question. A veritable litus test.

So ... with all due respect, what WOULD Jesus do if chronically ill? Ok. Lemme get personal. What would Jesus do if He had ME??? No doubt, He would be thankful its no longer be called by its former misnomer, Chronic Fatigue Syndrome.

AND THERE IT IS!!! Without even trying I reached for the editorial comment! The reality is, who knows what Jesus thinks about the name of the above mentioned neurological disease. Really. But what would He do? Would His lessons be any different if He hadn't been ... what, broke and scorned?? Ignored? Humiliated? Unbelieved? Disrespected?

Whoa.

I've already admitted my editorial comments concern me and recognize they stem from my own discomfort with a situation. I don't hearing snide editorial comments from others ... so why do I tolerate it in myself? Yuck. Who knew this entry was going to be so cathartic? I need to eliminate editorial comments from my speech which means I need to eliminate editorial comments from my mind. Which means I have a whoooole lot of thinking to do.

Upon request -

This is for Vito ... who, after listening to me sob into the phone last night, suggested ways I occupy my Very Long Days (which run pell mell into each other.)

Yes, I realize those words in parenthesis constitute an "editorial comment." One of the four sons I will no longer discuss in public has not "accused" me, but pointed out several times recently that I make said comments at the end of otherwise none judgmental statements. This very son actually makes a lot of sense and when he speaks, I listen. Actually, I seriously listen to everything the no longer discussed sons mention, if only because I find them unusually wise. Not that they always act maturely (they mostly do) but because they say Good Stuff I don't want to miss.

So ... I've been giving serious consideration to the Editorial Comment. As someone who comes out strongly against whining and passive aggressive behavior I'm having to recognize that the Editorial Comment sidles nicely into those ranks. Which is not good news for me!! Meaning I either have to own up to being both whiney and passive aggressive at times, or knock it off. I'm gonna go for the latter.

BUT HOW!?

What does one do when trapped?

When the Sons were young and overcome by emotion I used to say to them, "Tell me with your words." A lot of the times they didn't HAVE the words for what they were feeling/thinking so rather than using a verbal label they'd paint me elaborate and vivid word pictures ... and end matter-o'-factly with, "Yeah, it's like that." And, truth be told, I could usually identify with "that" be it a feeling or a thought. Sometimes I'd try to give words to it but a lot of times I just said, "Ohhhh, honey!"

This is what trapped feels like:

After a summer of pretty much being housebound (if not bedbound) I decided, after a successful drive to a medical appointment, to push my luck and go for a "drive." Yes, a drive. I haven't really driven much this summer but am always loathe to lose a skill or chutzpah. So off I went with Laketown in my heart and mind. Ok, I'm going to admit that the traffic on the highway was a WHOLE lot more visual and auditory stimuli than I was planning for. I had to employ all my best "focusing" techniques as well as my very best "never-mind-about-your-heart-rate-do-not-panic" techniques. Ten years ago if I was told this would be my life and thought processes I'd have narrowed my already squinty eyes, dropped my mouth open, and glared. Yet here I am.

By the time I was off the highway and onto the two lane heading for The Hill in Laketown I was back in self congratulatory mode. I may be my own worse critic but I'm also my own biggest fan. I've learned not to expect accolades from anyone, and so if I need them I've got to give them ... to myself. After a while of staring at the exceptional nothingness that is Laketown, I started home. I was tired, I was dizzy, and I had to admit to myself that it was just plain foolish to have pushed myself. I made a deal with myself (and God) that I wouldn't be so silly again and eased the car off the two track and back onto the WHAT??? I CAN'T GO NORTH ON THE HIGHWAY!?!?

The road had been completely blocked off excepting the southbound ramp and I had no choice. And I am soooo not a fan of no choice!!!! If I had a nickel for every time I've asked "what are my options" in the last 56 years, well ... I wouldn't be living on disability!! I will logic to kick in. I've driven this high way at least a million times BY choice and practically know every square inch of it until its end. But this is NOT calming to me. I'm driving further and further from my "home" and I'm feeling more and more unwell. I considered pulling off but there aren't any places to do so. The "overactive imagination" of my youth and every "what if" in the universe plays across the screen on the inside my head. What if I have a heart attack? What if my blood pressure drops so low I pass out? What if I have visual difficulties? What if I can't make it? Who will find me? Will I crash into anyone? Will they be hurt? I DON'T WANT TO HURT ANYBODY? i just want to go home now

Shaking and breathing hard I make it off the exit, although am somewhat disoriented. I want to pull into the local Burger King, whip out my phone, and call for back up. Only I don't have anyone to call. Can I REALLY call the above mentioned son and demand he come get me because I'm flipping out? No, not really. Can I REALLY call Vito and sob? Not the wisest choice. So I sit in the parking lot at Burger King and give myself the mother of all pep talks. I chat a little bit with God and get back on the highway going in the opposite direction with my heart in my throat. Less than ten minutes later I am in my apartment parking lot pulling into my designated car port. I turn off the engine and sit gathering the strength to walk the less than 100 feet to my door without thinking I look like jello in the sun. (WHY do I care what I look like to others in a moment like this? Who the hell knows.) I breathe in, breathe out. Breathe in, breathe out, I congratulate my diaphragm on a job well done. "GOOD BREATHING, Body!" I congratulate my less than stellar Ability to remain calm. "You did it, Ability! You got home!" I not only recognize that this was No Big Deal in my other life, I recognize this was not a "deal" in my other life. But it is now. Every victory, no matter how small, get chalked up in the "Win" column. And I find victories where I can.

Trapped. Yeah, it's like that.

"OOOHHHH, honey self! I know just what you mean."

So. I'll have to get to the "Editorial Comment" thoughts another time. Right now I'm going to show my honey self some tender loving self care.

On Whining -

It's been pushing four weeks since I've written and not because I have nothing to say. It's more about not having the strength with which to say it.

While I have always detested whining in any form, I find I dislike it even more now. NOT because there isn't something to complain about and NOT because I would quiet anyone, least of all myself. It's mostly because I hate the way it sounds ... either verbally or in written form. There's nothing that makes me want to roll my painful eyeballs more than reading "I had to drag my exhausted body to ... to ... and NO ONE appreciates how hard it is ....."

Really? I do and we do. "We" the community of those with neuro endocrine immune diseases. We really, really do. We know all about not being able to eat, or sleep, or have troubles swallowing. We know all about loss. Really. We've lost pretty much everything and recognize there's more to go (literally and figuratively.) We've begged, we've pleaded, we've sobbed ... we've attempted to make deals with God and the Universe. We've been willing to accept blame almost anything if we could ONLY have our health back. Really. We'll work until the second we draw our last breath. We promise never to have a penny of discretionary income. We promise to never touch a drop sugar/alcohol/trans fats/red meat/whatever is demanded, again. Really.

But the reality is, it's not about that. It's not about us as personalities. It's our bodies. It's Just Not Personal. At all. Letting go of that is a huge process as most of us here in the U.S. of A. as believe that we have a say in our own destiny. Isn't that the American Way? Life, Liberty and the Pursuit of Happiness?

But define destiny?

What I have learned is that my destiny is inside my self. In my thought processes, in the willingness to let go. It's there that I have choices and can pursue happiness ... and believe me, I will.

It ain't easy being Zen -

First of all, I have had the relapse to end all relapses the past month.

I will say if I was watching this happen to someone ELSE I'd say the following.

"Good grief, of course you feel wretched. Within the past year had kidney stones, sold your family home of 2o years, moved into an apartment, gotten your heart ripped out through your nostrils by ... oh never mind, and then spent the winter having five more kidney stone procedures with recurring ER visits. THEN w/in three weeks you saw your traveling musician perform and went to another son's college graduation in another state (literally.) Who do you think you are? SUPER HUMAN? Uber momma? Yeah? Well, you're not. You're a very sick woman eking out an existence on disability whose life has been turned upside down with No Sign of Rt Letting Up Any Time Soon. I"m putting on some tea and getting some scones. You. DON'T MOVE A MUSCLE. You just put your head back down on that pillow. NO. Do not move. I'm going to wash your sheets, empty your cat box, and stock your fridge with healthy "grab and go" food, and what. Do you want me to do your nails? Because I will!"

BUT ... of course since I AM that woman and can only summon up the strength for the occasional cup of tea I mostly sleep on ... well, you just don't need to know that. Yet, I really DO think I should be able to care for myself the way I'd care for others. But it's not happening. Not any time soon if any time At All!

I think it's all very well and good to Live Zen, but when the present is exquisitely painful (literally) what's so wrong about not being there? What's so wrong with zoning out in a haze of pleasant "healthy" memories? What's so wrong with recounting the loves of ones's youth? Or the children that are now adults? The gardens once sooo well tended and planned for all winter long. What's so wrong with that? What's so wrong with seeing a picture of a pasture in the mountains and envisioning oneself stretched out there under a warm (no humidity!) summer sun? Imagining not yet conceived grandchildren? Imagining strong and healthy offspring meeting their personal and professional goals. Can a disabled momma ask for more? I think not ... and it's pleasant to think about. Beats the bejabbers out of wanting to chew off one's legs.

I'm tired now. Ok, I'm tired always but I've been in bed for three hours post sleeping pill and have yet to fall asleep. Of course I'm typing and a cat on my shoulder isn't helping either.

So goodnight, Larry. Goodnight, computer. I'm going to shut out the lights now and do some not sleeping. As I day dream about raising sheep (something I thought I might do post child rearing) I will pay special attention to my ceiling fan and count it as Zen.

Lost count -

The mindfulness is NOT going well.

Day 2 - Mindfulness

Exhausted beyond all belief I took the concept of "mindfulness" to heart today. I found that choosing to focus on some sensory moments in the present helps me not worry about the future as well as not focus on the very present negative.

Some of the things I focused on today include ...

Vito's smile

Larry's fur

Two unnamed yet familiar behaviors of my sons

The taste of fresh strawberries

My DILs nail color!

Day 1 -

Inspired by Toni Bernhard's "How to Be Sick" I am going to attempt a month of "Zen Illness." Or, since it seems a little bit presumptuous to assume I'll be "down" for the next thirty days ... I'll just have a Zen Month. Today is Day One.

Today I will strive for mindfulness. Does this mean I have to pay special attention to all my various symptoms? I think not. I think today I will be mindful of MY actions.

Currently I am dressed and yes ... in bed with my laptop. This morning I went to pick up my first "share" of Fat Blossom Farms' organic produce at the Farmer's Market. I'm no longer a fan of hustle and bustle OR crowds so am thankful that there was very little of either. I was able to quasi quickly find the stand, get my week's share, and purchase three peonies white peonies. Peonies are one of the plants I miss MOST from home. In fact, any home in which I've lived had white peonies. Martling Avenue. Greenbrook Road. ElDorado Drive. 14th St. 11th St. But not now. Not this apt.

I thankful for this time in my tiny apartment as one "life" is wrapped up and another about to launch. I'm thankful for this time to learn what I love and what I need. Going forward, both literally and figuratively, I hope to have only those items that I need, use, and love.

All my produce was loving packed in plastic bags and is now in the fridge: garlic scapes, mustard greens, spinach, salad greens, and radishes join my asparagus. On the counter are the heirloom Sparkle strawberries I'll share with some offspring tomorrow, minus one. (Yes, one son and one strawberry. I guess I can say I ate one in his honor ... a snawberry boy, in his youth.)

I am going to attempt to tidy up a bit now and make myself some sautéed veggies!

Taking a stand ... WPI

I've been unwell since I was a child. Certain people liked to call it "stress" and look the other way. Unfortunately, I wasn't one of them. It was MY body doing all that misbehaving.

Now, at 56, I have been decidedly ill for a decade and disable for four. I was willing to put up and shut up as long as I could work and support myself and my children. But afterwards? When that was no longer capable? All my efforts, ALL MY EFFORTS went into figuring out what was WRONG with me.

Twenty three doctors later I had a definite diagnosis. Chronic Fatigue Syndrome. Ironically, the person who diagnosed me FIRST is a long time close friend and a nurse at my local hospital where they don't "believe" in Chronic Fatigue Syndrome. Yet magically. all those with with it get sent my way. To quote Mary Tyler Moore, "First, You Cry."

But I digress. I am tired today and my mind more than foggy. It's been three days since I've been out of bed except for the necessities of life. Today I really CAN'T tell my story. Literally or figuratively.

What I can say with fierce determination is that while I KNOW I will die from ME/CFS complications I will NOT go silently into that good night. Nor will the other millions who share in this hideous invisible disease. WE may be invisible, but our words are NOT.

TAKE THAT, CDC. TAKE THAT, NIH. We will not be silenced. Your atrocities will not go unknown.

Thank you, Whittemore Peterson Institute and staff for your commitment to your own families and the international family of ME/CFS. Thank you for you going where no one has gone before. Thank you for being willing to fall down and get back up. Know there are millions cheering you on from their beds. Millions praying for you by name. GO YOU. GO US! To life, to life ... l'chaim.

In loving memory of those who have already lost theirs ... I miss you Dr. Sharon Kirk. I miss the you I never knew, I miss the you I knew so briefly, and I miss the you that held my hand from the other side of the country and taught me how to begin to navigate this "life."

A wobbly walk on the Zen side -

Have you noticed there are more letters in the word "chronically" than in the word "living?" More letters in the word "chronic" than in "life" or even "living?" Yeah, well ... that's because it's out of whack, out of balance, soooo not T4 and way more lopsided than I had ever intended life to be.

Although decidedly an introvert, I am sooo not zen. Not. Zen. At. All. At least it certainly isn't just my nature. It fact, it may be the antithesis of just my nature which is quiet, a tad on the perfectionist side, opinionated, feisty, and mostly stubborn. Sometimes I think the "quiet" and "stubborn" parts of me are what's going to get me through this alive, so to speak. Meaning spirit intact. It's taken four years but it's finally starting to dawn on me I have no control over my body whatsoever.

Who took human biology? Hands, please? Anyone see the amazing "Human Bodies" exhibit? I did both. Yes to biology, and yes to the exhibit (which was far superior, btw ... sorry, Hope College.) As I lay here quasi flat on my back in bed for the third day in a row I've been entertaining myself with thoughts of Roseanne Roseannadanna. Recounting skits to Larry, as he alternately snores at the other end of the bed and shares the pillow with me. Who knew cats could be therapy animals? The irony that Gilda Radner died of cancer, is not lost on me as we PWCs are usually taken out young by cancer or heart disease. Or suicide. Why? Yeah. Back to Roseanne.

Do it with me now. Widen your eyes, look indignant and say, "If it's not one thing it's another." Now scrunch your eyes and hold your thumb and forefinger close together ... you know that little teeny tiny gland in the center of your brain? Yeah. In the center. (Now point down straight into the center of your scalp.) Yeah. THERE. Waaay down in the middle, sort of like in the center of the earth is a teeny tiny gland called the hypothalamus. It's the size of a pearl. A PEARL. Small enough to hide w/in the shell of a mollusk (I love that word.) Yes. Smaller than your baby toenail. THERE. Mine is broken. Smashed beyond all recognition. Switchboard malfunction. Meltdown status. Yup. My body can no longer regulate its "stuff." You know ... heart rate, BP, body temperature, hormone production. Little things like that from that little gem of a gland.

This makes life fairly erratic. Really. I mean when the BP tanks to 80/40 and the heart rate soars to compensate, one sits down ... if one hasn't already passed out. Kind of takes the spontaneity right out of life. Or not, depending on one's vantage point. There are two ways of looking at life: take it or leave it. And truth be told, a lot of those with ME/CFS choose to leave. Me? I'm staying as long as I've got a choice in the matter. Which leaves me with another choice. Do I live in a state of perpetual panic? Or not. Is there another choice? REALLY?

Well ... turns out there is. Having spent the past four years of disabled life trying to regain some control I'd have to say I think it's as good as it's gonna get in those terms. I've been granted SSD, have a pittance of LTD and am able to fake a "lifestyle," so to speak. Although it is certainly not what I would have chosen for myself, there are a lot of things about my life I wouldn't have chosen when I was healthy! But I didn't have control over those things either. Nor could I gain it ... no matter how hard I tried (AND I TRIED!) So the issue of life, du jour, really isn't about being able bodied or not, it's about CONTROL. I have never wanted to control another person's life ... just my own. Really, my own was plenty for me. I've been able to make choices that have focused my life in one area or another ... giving it direction, but not control.

If I had been in control I would have said to my life:

"You may not put in my foster care."

"You my not put me in said adoptive home."

"Universe? You may not hurt my children. Teach them, but not hurt them." (Yes, when I was a SAHM my children WERE my life 100% of the time.)

"HUSBAND? You must stay and work on the marriage. Must. Go. To. Counseling. Together." (Yes, when I was married my husband WAS my life + the kiddos.)

"Former bosses? Ixsnay on the icromanagementmay. Really." (No, I did not want their jobs, I just wanted to do my own, thank you very much.)

"Students? Become enchanted with learning. Just try it for a day. Really. It's contagious." (Again ... my job.)

"Parents of students? Look me in the eye ... THEY are the children. YOU are the adults. Snap out of it." (Again ... my job.)

"Body. You may age, albeit gracefully, but you may not decay. You may not fail me. You MUST keep me going."

To all of the above the Universe said, "Good luck w/that." And kept spinning.

So if I surrender control do I surrender everything? Have I lost everything? Have I lost the proverbial "it?" And to whom or what am I surrendering? God? GOD!? Dude, are you like angry at me or something? Did I do something HORRIFIC prebirth that required such flagrant disrespect of my humanity? And is that really the tone I need to take w/you? I think not.

Because I know that's wrong thinking. God loves me and all the other humans scurrying to and fro. Really. REALLY. While I'm not certain He's a FAN of what's going on down here on planet Earth all the time, He's God enough to stay out of it when He should, and He does. God is a fan of Free Will.

Yes, thank you ... I'll take those reins. Even while shackled with ME/CFS. Yes, please ... I give up. I'm ready not to be angry all the time. I'm ready for peace. I'm ready not to wake up with my heart racing in fear what the day might bring. I'm ready for peace. I'm ready not to be on the verge of bursting into tears almost Every Single Moment. I'm ready for peace. I'm ready not to hide behind West Michigan's version of Christianity and expand my "God Box." I'm ready for peace. Even if that means no longer being on the verge of tears, but weeping.

For the next 30 days I'll be taking a wobbly walk on the Zen side. Breathing in and breathing out. Expanding my diaphragm. Envisioning my cells NOT containing multiple viruses. Envisioning health ... both physical and mental. Transporting myself from the confines of my bed to my almost-sort-of-maybe-next-year back yard/woods where I can close my eyes and listen to the leaves. Or not. Although climbing the dunes is currently not possible for my body, it is for my mind. Perhaps I'll start with the clay dunes of my youth on Martha's Vineyard. Then I'll scamper up some old friendly mountains in the Adirondacks and imagine life from the top of their world. Then, when I'm ready ... I'll come back "home" to MI and head for its sandy shores. One day at a time, one hour at a time, one minute, one breath.

And repeat.

Walk with me?

Vito goes "Home"

This was a work in progress for a month or so, but has just been finished and "copy approved" by Vito.

__________________________

Vito, originally from the east side of the state, has very little family here in the U.S. While growing up, his immigrant parents did what all immigrant parents do ... envision a life better than their own for their children. Posthumously, Mr. and Mrs. Vito's Parents, you did an incredible job. All your offspring have more than sprung, are overall content with their life choices, and love you. This is more than a lot of parents could or should ever hope for, despite their country of origin, perceived socio-economic status etc. etc. Bravissimo. Really.

I know he talks to you both regularly ... but am not sure he's gotten back to you about last weekend. After coming home from San Cono this fall he was filled w/joy but also with more questions, which he has been tackling one by one in his well known and endearing Vito Style.

We went south this past weekend to visit where you've been before, Mrs. Vito, the state hospital where your mother resided while you, your sisters, and brother were in orphanages. Before and after your father went back to Italy leaving you all here in the United States. Driving through the stone gates where your mother resided for decades, we both felt we were on hallowed ground; knowing that you and what was left of your scattered family, here in the United States, spent so much of your physical and emotional lives entangled there. We walked the steps your mother walked, saw where we believed her buried, and Vito stood where you posed for pictures on visiting days when you visited Nonna Vito.

The staff we spoke to were very kind and while she was not there by choice, Nonna Vito was well cared for. We saw the now closed buildings which housed the laundry, the kitchens, and other places where those who were able, worked. We saw the building in which surgeries were performed, and I hoped against hope that Nonna Vito was never housed within those walls. "A Beautiful Mind" has never left mine.

But one of the things that impressed me most was that Hoosier ... hospitality? Not really. Accent? No. 'ness. Yes. Hoosierness. That down home, y'all-come-back-now quality I had not expected to find just a short distance from Chicago. That very quality that went from "no, I can't help you," to shared stories of our own genealogies, to a phone call "just to see" if Dr. M. could sign some paperwork, to a conversation with him including his remarks that he was glad to see Nonna Vito had had company almost half a century ago, to a phone call to Indianapolis ensuring we would indeed get access to the document of Vito's desire ... Nonna Vito's death certificate. Because, in the midst of getting all said and done, Vito feels almost at home in Italy as he does in the United States. Your families, Mr. and Mrs. Vito, are begging him to obtain dual citizenship ... to come "home," if you will. (See also John Denver and T.S. Eliot.) You betcha, this is a WHOLE lot more than Vito bargained for when doing "just a little genealogical research." Yet, isn't this the conundrum of genealogy? Will one open the Pandora's box including family who fled the Ukraine and a whoooole lot of people who knew you existed before you knew they did, or family in Italy ... who knew the exact same thing? Startling is an understatement. Before we left the State Hospital we took a drive around "campus" one last time .... past the cemetery where Vito believed his Nonna to be buried. He frets about her being there alone w/out family ... and doesn't want her forgotten, so he was buoyed by the story of an unmet friend of mine, Kitten, who climbed over a fence to bury her non-Jewish grandmother with her Jewish grandfather, in a cemetery where gentiles were Not Allowed. Based on all I've learned since age 40 and the discovery of my own birthfamily, I can definitely agree that blood IS thicker than water, despite that extra molecule.

Ignoring the recommendation from a State Hospital Employee that Applebee's really DID have the best food in town, we foraged until we found one of the best meatball subs this side of Brooklyn. And although he didn't say it out loud, I'm sure Vito appreciated that one could get a decent meatball in the cornfields of Indiana.

We drove on to Indianapolis, where I once "hung out" with a man for almost a year, and from whence Kitten haled, if only for a short time. We agreed, Kitten and I, that Vito should go, nay, NEEDED to go to the Slippery Noodle. Which we did on a Thursday night when the weekend's "talent" is in for a lower cover charge and half price drinks. Great blues. GREAT BLUES. And as it was kind of a bluesy weekend anyways, it was fitting. It was unreasonably warm, even by Indiana standards, and a balmy evening with a couple of beers was more than fitting. It was needed. Although watching an older Italian woman dance with a young man w/in the age span of The Sons brought me right back to the State Hospital and Nonna Vito ... for the most part, the sins of the day were washed away. Because, after all, Friday was Document Day at the Archives.

The Archives are in a pretty grim state, figuratively speaking of course, and possess all the charm of say, a defunct yet still standing shopping mall. We'd have driven right past it if we hadn't been scanning for street numbers with such obsession. Really. I've seen school district bus garages with more style than this. But given the state of the economy and all, I suppose I should be thankful they're still open at all. And I am, thankful.

Rabbit trail. I personally descend from a long line of academics ... both in my adoptive family as well as my birth family and the truth is, I'd have given birth to The Sons in a library if allowed. They are sacred places filled with the lives and thoughts of others ... on this planet or elsewhere. And having entered my own search for my genetic Holy Grail I can sense another's when I'm near it ... and I'm telling you, that childhood game of "Hot or Cold?" had every fiber in my being shrieking, "We're getting hotter, we're getting hotter! RUN, Vito, RUN!." (Ok, that was a little bit "Dick and Jane.")

Vito checked his bag into a storage locker (not allowed) and being the good girl that I am, I asked if it was ok if I brought in my own purse. I half hoped we'd be able to wear gloves ... if only because I'm SUCH a fan of Original Documents that I dare not taint one with my grime. This, disappointedly, was not necessary. Dr. Archive was the strict master of his domain, and we dared not trifle with him. Having dealt with archivists before, I knew the drill. Line up, shut up, 'fess up. Yes, there are times when tears shed still provoke emotion in those grown immune to them. Especially female tears. Even middle aged ones. Ok, old ones. As The Sons often remind me, I am not middle aged as it is unlikely I will live to be 112. (Dear God in Heaven, please spare me THAT!) Dr. Archive finally came out from behind his glass doors and we presented our written request, in triplicate. Fortunately he remembered the phone call from the good folk at the State Hospital from just the day before and had recently received a letter from a Vito Cousin. Hence, the family name (not exactly Indiana farm bred) was in the forefront of his mind. Within a few moments he came over to our well worn library table lugging a MASSIVE tomb of yellowed papers. Although I had the automatic urge to GRAB it, I clasped my hands behind my back as Dr. Archive showed us how to touch the documents, how to place a provided weight on each paper as we turned it less we strain it too much. After all, those who did the original recording did so with the technology available to them ... and as the decades pass, not only does the technology become more and more outdated, but the documents themselves areas fragile as Nonna Vito's skin must have been towards the end of her life.

Fortunately, bless his little I.T. heart, Vito can be quite systemic about problem solving. This pleases me greatly as he never runs willy nilly into a situation. Any Situation. Despite the fact that he marches to the beat of his own drummer, Vito is Consistent. Both these fine qualities, although frustrating to many sheeple, make a good researcher ... one who is not only ready, willing and ABLE to pour over a document, say 500 times, but one who does so with GUSTO. Quiet and thoughtful gusto, for Vito. A little less quiet, for me. I will admit to the slightly above library tone gasp, guffaw, and even an occasional Out Loud, "OH NO!!!" So there we sat for hours, up until closing time, pouring over the transcripts of Nonna Vito's life. Her physical and emotional story ... one we thought we were prepared for, but really weren't. Ironically, I, the survivor of Searching, took it harder than Vito. We took turns reading the worn out original hospital transcripts, took turns reading out loud when the other's eyes grew tired of well worn fountain pen ink in a writing style no longer valued or taught, took turns taking notes, took turns crying, and took turns taking breaks. All in all it was a shared event. And Vito came away with much more than a death certificate; he came away with more of his Family Story, and consequently ... more of himself.

Due to the very personal nature of one's (anyone's) Family History, due to the very personal nature of Vito himself, and due to the fact that it is really Not My Business, I will not share what we discovered that rainy day in Indy. But I will share what happened within my own heart.

First of all, I am soooo thankful for my family. SOOO very thankful. This extends from my birthmother/birthfather and assorted siblings, to my foster mother, and finally to my adoptive mother/father and sordid sibling. But most of all, I am thankful for The Sons. The very first people I met with whom I share DNA. The very first people I ever met who Look Like Me. I Am Just So Thankful. WHY? Because, dysfunctional as it is ... it's MY story and it took me decades to find all the players. Decades.

Secondly, I am thankful for Vito. Not that our friendship/relationship has been a walk in the park (although we do love to walk in parks) but his Very Vito Nature is near and dear to my heart. No, he does not always "get" me but he always listens ... eventually. Always. THIS is something I appreciate more than I can say. He holds his, oh pretty much everything, close to his Italian made vest, and while that can take patience a good deal of the time, I feel honored that he shares himself with me. Because Vito is a pretty great human being.

Finally, I am thankful to be part of another Family Story. And just like all Family Stories, this one didn't get wrapped up in a neat tidy box from the Sicilian Bakery with an Italian flag sticker. It didn't get wrapped up in any SORT of neat tidy box. Rather it got some loose ends woven into its already rich tapestry ... still not neat and tidy, but more well tended. Kind of like the large, blousey perennial gardens in the photo behind Nonna Vito and her beloved oldest daughter as they wrapped their arms around each others waists at the State Hospital for the Insane. Snapped and Frozen in Time.

Blind sided -

Every once and while, or fairly regularly, life smacks me right upside the head. To that end, I have been swirling.

Here I meant to have a perfectly reasonable spring (despite its hesitant appearance in West Michigan) and yet, what a MESS. I've vowed not to talk about my children except en masse, and won't ... although I'd really love to. The no longer youngins' are moving and shaking these days and, as always, it's been a dazzling display of testosterone. Of note, my personal desire to rescue them from what I think is certain peril and impending doom is no longer as strong as it once was. Oh, my love for them has done nothing but increase ... but somewhere within the last year, my mind AND heart seem more willing to allow them to grow up. To hug them goodbye w/out tears. Not to call out, "I LOVE YOU!" as they are walking to their vehicle of choice. Oh, I still smile to myself often during the day when a thought/memory or inside-my-head visual makes me remember one of them in a particular instance. I still tear up when thinking about certain subject matters in their young lives. I still actually cry out loud when recounting traumas of their youths. But although I will admit to the occasional sleepless "child heart ache" night, they don't come as often as they used to and when they do, I'm more likely to be MISSING them than wanting to share an opinion with them. Not missing the "good old days" of their youths, but the right now of their adulthoods. I'm missing My Sons The Men. Who's doing the growing up here?

Here, I was really just gearing up w/the childhood stories and was full of memories of days spent rolling down my back hill in a packing barrel, building my first double decker tree fort, and Bridge Crossers. (Of course, this all happened once I was allowed to cross my gravel driveway and enter the REAL backyard ... as opposed to the well manicured "circle." A misnomer if there ever was one.) But blam ... life. Right in the kisser.

This whole Dressing Your Truth thing has been fun. MORE than fun. Nay, an almost obsession until I realized I don't really GO anywhere and yeah, it's great to feel confidently clothed while lying in repose in a 1k sq. foot apt. watching "Law and Order" reruns, but REALLY. Does it matter?

Yes. And No.

Yes. When disabled and life as I'd known it has been stripped away it's kind of good for the soul not to look like I feel. And Yes. I actually like looking decent. And Yes. It is good.

Yet, NO, it is not. It is NOT all about Dressing My Truth, it's more about LIVING My Truth. This isn't my invention. Carol Tuttle, a woman with whom I do not always agree but HIGHLY RESPECT, has really done some amazing "energy work" with countless women, one at a time. I've had to come face to face with who I REALLY am. I can tell you it's "Just My Nature" to think I'm actually pretty fantastic (able bodied or not,) and it's "Just My Nature" not to care all that much about those poor slobs without a shred of good sense who disagree. It's also "Just My Nature" to hurt like hell on the insides and not show it on the outside as it's "Just My Nature" to Remain Composed to all who do not know me. (Those that Know Me know that my composure is sometimes shaky at best.) To quote a child I once knew, "They hurt me on the insides." Yes. Badly. Who they? In the end, it does not matter.

Just an aside ... a few days ago as I was knitting fast and furiously to finish a sweater for a son, I clipped the end of a woven in "end" only to discover I CUT A HOLE IN HIS SWEATER. Now, it's important to know said son did not receive this sweater On Time (which is Extremely Important to me.) WHY? Because I made myself ask this very difficult question for a perfectionist to answer, "Will this matter in five years?" The obvious answer is, "Nope." I had to call myself by name and say to myself out loud, "Put the sweater down and walk away. Do not attempt to fix it. Do not attempt to rescue it. Put the sweater down and walk away." Which I did for two whole days.

But I digress. The point is, the real question I have been having to ask myself, about pretty much anything right now, is Will This Matter in Five Years? And what's dawned on me, almost like an electric shock, is that NO, a great deal of what I do will not. I am not pleased about this. I am not pleased that I will miss an online forum where I very much felt "At Home in the World" (thank you, Joyce Maynard.) I am not pleased to forgo witty repartee with the like minded. I am not pleased to have been hurt by some Thoughtless and Insincere women who used such disgustingly DYT PC language that I wanted to hurl all over my T4 bathrobe. I am not pleased at At All.

So after making a pronouncement I wish I had taken more time to consider, I now have to make good on my word. Because really. I Do Not Lie. After removing my Indignant Hands from my keyboard and putting it to sleep, I had to ask myself The Question. WILL this matter in five years? Nope. So now what? I've seen all the reruns of every episode of "Law and Order" at least ten times. Ask any of the sons ... or any of my close friends, for that matter. Even "30 Rock" isn't doing it for me anymore. Documentaries are depressing the daylights right out of me.

So now what?

NOW I get to put my time where my mouth is (the money is looooong gone.) NOW I have to Live My Truth. Will this stand up to the scrutiny of the question of all questions? WILL This Matter in Five Years?

Yes, it will.

Pleasantville Lives On!

Just a quick update ... my chronic living has been mostly w/in the confines of my room, and has not included writing.

I did want to mention, before I hopscotch from preschool in NJ to other things, that on Facebook I "ran into" a woman who grew up on the same street as I did in Pleasantville, NY. No, I do not know her nor did I ... she is a good 13 years younger than I am and I was out of NJ and on to upstate NY by the time she arrived.

HOWEVER, her mother still lives in Gretchen's house almost across the street from 'my' house! I can't picture Gretchen or any of her family but it was thanks to Gretchen's (German) father that I fell in love with VW's. This Car I can see AND HEAR in my head and Mr. Gretchen downshifted down the hill. It was, and is, a small car love story that exists to this day.

Wardlaw -

As I can remember it, other than the occasional trip to Shop-Rite, the meat market, Dr. Lathrop's, and Fred Lippert's for Children, I don't remember going out much during the week as a child. Part of that was the late 50's/early 60's regime of the one car family and part of it was the roles men and women assigned themselves. (Please don't tell me society gave them those roles ... we can all think for ourselves. Really. Ok ... some are more likely to than others.)

But I DO remember going to Wardlaw for nursery school (imagine my surprise when DECADES later ... like this past summer I learned that part of my birthfamily lived down the street although a few years post my being there). I was four years old, so what did I know about the "status" of the school. I just knew that I didn't fit in. This was and is not an unusual theme in my life ... whether it's my T4 nature, my sworn to family secrecy "bastard" status, my not yet revealed yet suspected Jewish origin, or other things too many to recount at the moment, but I know I Did Not Like It.

I can literally see myself before heading out the door. Short ash blonde/almost gray hair, that killer "do" we all wore where our bangs were so short my "widow's peak" stuck straight out, and a pixie that could NOT be coaxed back into waves as it grows STRAIGHT FORWARD. I wore tights, a shirt w/a Peter Pan collar, a skirt with suspenders attached to them, and sturdy oxfords (ooh, how I BEGGED for "buckle shoes" to no avail!)

I don't remember a single person at Wardlaw but I DO remember the building (old and stone,) the front steps (quite a few) and the windows (LARGE!) Perhaps this is when I fell in love with old architecture. Who knows. I do know that I was deemed "gifted" which only added to my weirdness. I was tested and retested by many experts never "getting" what the big deal was. My mother was slightly embarrassed and my daddy was non-plused. I could have been a savant and he would have loved me just as intensely.

It must have been a fairly progressive place as I don't remember having to be on a certain 'schedule' other than play ground time. I remember two of the"stations" the best ... the reading and the art. In the reading section there were giant pillows on the floor, bookshelves that met a petite 4 year old's gaze, and BLANKETS. This meant I could literally curl up on a floor pillow, cover myself w/a blanket and READ ... which I apparently did more often than "they" would have preferred. If I wasn't reading I was at the easels where it is told I "favored" BOLD colors and geometric shapes. I rarely painted "pictures" but I do remember a lot of linear stuff on the front of my fridge at home. Yet it wasn't my reading ability or preference for mixing my OWN colors that worried the good folk at Wardlaw. It was my penchant for eating paste and my inability to tie my own shoes. Yes. I confess right now: I ate library paste straight from the jar. I can STILL see the paste containers and remember unabashedly digging in with my fingers. No need for a spoon. I don't think it hurt me yet it certainly was disconcerting to those around me. That tiny little girl with the pokey bangs ... there she goes again.

I will say I remember learning how to tie my shoes! My mother gave up after a couple of attempts because I was so PICKY and wouldn't let her HELP me, and my father plain old didn't care. But *I* didn't like being the only one at nursery school who couldn't tie my own shoes! I can see myself sitting on the swings in the playground staring down at my own untied sturdy oxblood oxford filled with 4 year old angst.

Would I ask for help? HECK NO! I never wondered where "THAT" came from when one of the Son's emphatically uttered, "I do it by MYself!" Doing it MYself has been something with which I STILL struggle. I'm not afraid to ask for help, I just don't like it. Even when pretty much bedridden I still tend to do what *I* can do. I will admit I now will quasi freely ask two healthy friends for help when I really NEED it and call the Sons for Tech Support probably more than they'd like, but other than that if I can't do it I DON'T do it!

So there I sat looking at my shoe as the swing slowly came to a stop. And there I sat. I can't remember his name or even what he looked like, but there was a boy on the swing next to me who said, "Tie your shoe." Was there any other possible response other than "No"? I think not. This dear boy then untied his OWN shoe and I watched intently as he tied it by himself. Then he did it again, and AGAIN. Finally, I made two bunny ears with my own laces, crossed one over and under the other and PULLED. Was this the first time I strutted? Swaggered? Nonverbally showed the world how proud I was of myself? I don't know ... but I certainly do remember it!

It was during the late winter at Wardlaw that I became ill. I didn't have the stomach flu and I didn't have a cold. I had a fever of 104 for over a week. During that time Dr. Lathrop came to my house quite frequently and I remember my mother giving me a cold bath every single day I was sick. In reality, it may not have been all that cold but to my 104 body, it felt like ICE. She'd sit me on the side of the tub, slip my nightgown off and me into the tub, pour cold water over my entire body, drag me out, sit me back down on the edge of the tub, towel me off, pour me into a clean nightgown and carry her trembling girl child back to bed. Other than that and my steadfast refusal to eat I mostly remember why I never felt the need to try hallucinogens as a teenager. Nor watch Johnny Depp's "Alice in Wonderland." My very own dresser at the end of my bed bulged oddly and grew to ceiling height while my bedroom curtains billowed out at me so much I was afraid they'd engulf me ... yet the windows were never opened and the house was heated w/radiators. Years later in upstate NY as a teenager my mother would remind me that the brain damaged boy next door suffered a week long fever as I did as a child ... and how BLESSED I was. Please, mom, tell me one more time. Yet when I look back on that week NOW, given my current medical status, I wonder if that's where it all began, the week I Fried My Brain ... and consider it medical foreshadowing.

But the coupe de humiliation was my return to Wardlaw several weeks later when Jersey was in full bloom of riotous spring and the near neon azaleas in our front yard SCREAMED for attention as I got walked out the side door resplendent in my snowsuit, boots, and mittens. Was there a need to pin a label on me stating, "this girl is a nerd now and forever more?" No. It was pretty obvious.

Jerseylicious

When we last left off ... I was leaving Pleasantville, NY for North Plainfield, NJ ... where my dad worked the BSA in New Brunswick as the head of their audio visual department.

Ever seen old 50's Boy Scouts TV commercials w/a little lost girl? Yeah, it was black and white TV but this little lost girl had oddly ash blonde/gray hair and squinty blue eyes. This little not lost girl was me ... always rescued by an Eagle Scout. How did I love them? Let me count the ways!!

Seeing as I lived in NJ until between 7th and 8th grade, I can say with great certainty, I remember a LOT about it and only need to see TV commercials about NJ before I start saying things like, "daul" for doll and "dauwg" for dog. And I can MORE than snap a few z's.

But the first thing I remember about Greenbrook Road, is not the house, but the property. Although I had graduated from a "closet" in my parents bedroom in Westchester, in NJ I had a proper bedroom all to myself, complete with a closet of my very own and a window surveying My Land. Yup. We owned an acre of land/woods right there in North Plainfield, NJ and it might has well been a forest preserve as far as I was concerned.

Although my front yard was a mere three blocks from the infamous Route 22 and I was lulled to sleep by trucks zooming up and down it all night, it was literally out of sight, and therefore out of mind. Heavens knows, I was NOT allowed to go in the front YARD let alone cross the STREET so other than my bedtime "white noise" I only knew that Route 22 contained my favorite restaurants: "The Leaning Tower of Pizza," an A and W Root Beer place where they really DID hang a tray on the driver's side window, and the infamous "Howard Johnson's" with their 28 flavors of ice cream and killer grilled cheese sandwiches. Oh. And on the other side of it was Berkley Heights where my friend, Virginia, lived.

But most of all, I was a land owner. Ok. The daughter of a land owner. Said land was divided into three sections behind the house. The "circle" which really was a semi circle of grass complete w/requisite flower border and ginko trees separated from the "back yard" by a winding gravel driveway that came off the street, ran past the side of the house, and around the back where one could drive into the two car garage ... separated from the house by a breezeway. But most important ... were "The Woods." More importantly, MY woods.

I can honestly say there wasn't a single day from age four until 12+ when I didn't pull up my back window shade and literally gasp with awe. Jersey has hellish hot summers with humidity enough to make even my stick straight hair suggest a curl, but the pay back for that was and is exquisite springs, mild winters, and "Indian summers" that went on until Thanksgiving. Every day I gave thanks for my woods.

For the longest time I was not allowed in them alone nor even allowed to walk across the gravel driveway into the "backyard" lest I get rambunctious and dare play in the creek that bordered the property and meandered through the woods. And, quite honestly, I didn't disobey ... my own sense of guilt for disobeying as a child was enough to keep me in line, let alone the reminder of the discipline that awaited me if I didn't. It wasn't for nothing my brother called me "Good Girl."

Because I was.

So. I did the best I could with the devil on one shoulder and thoughts of being smacked with a belt on the other. I sat on the edge of the gravel with my feet planted in the "backyard" (which was really just mowed crab grass.) I'd hunch my legs up to my chest and rest my chin on my knees and plot. When the time was right, I was gonna OWN those woods.

The Sons

I really didn't intend to write today as I have way to much I HAVE to do, but I will say the four of them have been heavily on my mind and heart the past few days. A tad because my heart is heavy when I'm aware they carry burdens of one sort or another (April is a horrific burden for college students!) but mostly due to a conversation with one of them held a few weeks back.

First of all, like all mothers ... ok, most mothers, my sons are most definitely at the top of a relatively short list of those I would die for (no pun intended.) I remember after the Professor moved out I slept with one of their "souvenir" baseball bats under my pillow in case I needed to bludgeon someone who broke into the house and threatened us. Yeah, me and a 12" bat from The Baseball Hall of Fame in Cooperstown, NY vs. a robber. Not good odds ... but I was willing to play them. Or at least pretend that not only I could, but that I WOULD, and WIN! Or die fighting for them. Go me! Go Sons. GO TEAM!

I realize that due to my own background, birthing and raising said fine young men was/is not only something I LONGED for, but something I DID, and while I certainly didn't do it perfectly, I did it with positive intention, love and RESPECT for who they each were as individuals. I recognize that after a decade of childbearing and another couple of child rearing it has been 32 years since I carried a child w/in me and will be another 18 months until the youngest has graduated from college. Just doing the math (love the math.) When that day comes, I will be 57 years old and more than half of those years (33.6 years to be exact) will have been spent with them in the FOREFRONT of who I was/am.

So it is with this respect for who they ARE as young and approaching not so young adults, that I am no longer going to write about them specifically. When I started this blog journey I did so so I could tell them MY story ... which got lost in the shuffle of child bearing/child rearing/divorce/graduate school/child rearing/teaching and more child rearing.

My favorite Sister/Cousin (I'll talk more about this phrase later) is an accomplished writer whom I LOVE to read and talk to. She has guided me through negotiating my birth family, divorce, and was there (in NY) to long distance talk me through getting a diagnosis (although I do think there really WERE times she truly thought I was nuts.) She is bright, she is bold, she is frank ... and she herself is at the top of a very short list of those I call when in SEVERE distress. I know she'll give it to me straight, no sugar on top, and definitely no cherry.

After the aforementioned convo with one of the sons I wrote her and asked, "How does one write about one's life and NOT include their children?" She wrote back and said that when he was ll, "Boy" asked that he no longer be mentioned in her columns. Boy is now a Grown Up and I haven't read a public thing about him for more than a decade. Yes, she also keeps her word, no matter how unhappy or uncomfortable that may make someone else. Harsh? I used to think she was ... now I just see her as one who is just totally comfortable being herself. Because she had to be to get through her own life, grew into it, and she became it as much as it became her. I truly love this woman. But I digress.

I'm past the "empty nest syndrome," past the lack-of-soccer-shoes-in-the-hall syndrome, and past the backpacks-on-the-floor syndrome. But hopefully, I will never be "out" of the mommy- love syndrome. I imagine w/in the next five years or so I'll also be in grandmother-love (although I hope for a more original moniker than THAT!) I'm thinking of stealing "Ya Ya" from a midwest friend. But in the end, my grandchildren will call me whatever comes out of their mouths, and I'll think it pure gold.

Yeah.

Back to The Sons. One of my parenting "themes" and consequently teaching "themes," is that children deserve a childhood. One as carefree and childlike as possible. A child deserves to grow up crawling/toddling/walking/running his or her path, not in the shadow of another sibling or adult: to be who THEY were born to be. And I can say, with tears in my eyes, I think I did an ok job at this given what I had to work with at the time. But my job isn't over yet. In able to STILL give them that childhood, I need to respect it long after it's gone.

To that end, I will no longer be writing about individual sons. I may write about them as a group, but I will not "rat them out," "give them up," or otherwise betray the sanctity of their short yet precious youths. May they grow stronger, more secure in who THEY are and in the love of their family and friends, and more into the men they were born to be.

GO TEAM.

I love you, guys.

Mommy mommy -

Bankruptcy -

No, not that kind ... actually, my credit score is amazing, thank you very much. My mother and Daddy raised a top notch saver that has allowed me and the sons (when they lived w/me) to live a much "better" life than we would have had I not been taught the basics of finance with baby food jars. I had three jars and every week my dollar would get deposited thusly ... 10% (one slim dime) in the "Giving Jar." One slim dime in the "Savings Jar," and 80 cents to spend or save as I wanted, although given my "wants" I learned the basics thrill of compound interest fairly young! This easy peasy principle has been one I've followed all my life ... and I wish I had passed on this complicated financial wizardry to my four sons. So guys, there it is. And to quote Grandma, "Old money holds." That's it. Combine that with "buy low/sell high" and you get the drift. No debt. Never. Ok, except for maybe a house. Maybe.

So I was surprised when my ME/CFS doctor asked me if I knew what bankruptcy meant yesterday as I sat in her office telling her I didn't even like who I was anymore. I wasn't happy, I wasn't sad, and I pretty much wasn't anything but tired. But I do know ... something inside me has shifted this past winter, and I don't like it. So we reviewed my physical symptoms and she asked a few questions about my emotional "state." I leaned forward in my seat as I told her how I could no longer "blow things off" that I used to be able to. Like hypocrites, for example. Or blatant liars and manipulators. Oy. Or politics! I don't even watch the news and I'm a news whore. Now I rely on Vito and the Freedom Fighter for all the goods. Even the rantings of others on fb give me an inking on what's going on Out There. But now I'm rambling.

SHE leaned forward until our knees were almost touching each other and asked me, "Do you know what bankruptcy is?" I straightened myself right up and declared, "Thankfully, I have never BEEN bankrupt nor do I intend to be!" Good heavens. I am sooo financially cautious!

"Oh," she sighed, "but you are!" I bent forward again so my forehead was almost touching hers as she explained to me what being physically bankrupt was. What emotional bankruptcy was. And what it meant to be mentally bankrupt. Then we added up the tab since June ... the wanted yet stunning sale of the family home, the physical act of purging three floors and a basement of "stuff," some intense and life altering personal shake ups, six surgeries w/accompanying anesthesia (thank goodness, yet which I had no IDEA took that long to leave one's system!) etc. etc. And there you have it ... a woman deplete of pretty much everything. Me. Or rather ME.

Because this life with ME/CFS ... one never knows when the Grim Reaper will come and steal what one has left of life force. Waiting to render one a blob on the couch watching "Law and Order" reruns just because. Checking Facebook oh, way too much, and too tired to knit.

Yet now knowing I'm "bankrupt" and will at some point return to my "normal" ME/CFS state has brought a peace with it. Knowing I can wait out this crash w/no shame, no guilt, and no judgment.

So I today I embraced being a "couch potato," had my own version of a grilled cheese sandwich, and called one of the Sons. Life is good.

Renewal ... in a T4 State of Mind

In my quest for "living light" and being oh-so true to my T4 bad self, I am emptying out my closets and storage areas of things I no longer use or wear.

Metaphorically speaking, WHY am I releasing things I love into the Universe? Why, to make room for more of what I love, of course. No. I'm actually doing this for some very practical reasons and am assuming the metaphorical stuff will show up on the Universe's time table.

First of all. I have too much stuff, plain and simple. I realize part of my discomfort in my 1k square foot apartment is that I have too much stuff in my closets. This means even doing laundry or purchasing a new pair of jeans is cause for despair. Because to get something OUT or put something AWAY means moving too much stuff. I'm wearing thin of this stuff maintenance. Every Item I Own is being Scrutinized. Do I love it? Do I use it? Does it need a new home for some physical or emotional reason? If so ... into the E-bay Room it goes. I figure four years of grieving the loss of my teaching career is enough, who knows what the future holds ... but I can tell you what I WON'T be wearing. My former teaching wardrobe! Gone are J. Crew winter skirts (no matter how "timeless.") Gone are jewelry items I never wear but aren't worth holding onto for the kids/future grandchildren. Gone are six pairs of dress slacks. Gone are sweaters I no longer wear. Gone are T-shirts that are no longer public worthy but are good for gardening/cleaning/bathing the now deceased, but still loved Olive Veda. Gone are T shirts that were "good enough." Now they aren't. Gone are too-many-to-admit-to pairs of shoes and coordinating but not matching purses. Gone are all the scarves I accumulated but rarely wore. Gone, gone, GONE. Not all sold, mind you ... but gone.

The second bedroom/would-be-sewing room (if only I could remember in which box I packed the foot pedal) is now the official E-bay Room. For awhile I just gleefully threw in unworn clothing and shut the door but the reality is, I love Law and Order.

No longer able to do things in a Single Bound (anything, really) I have meticulously broken down the cleaning up and out process into manageable steps.

1. Remove all unwanted items and banish them to the E-Bay Room.

2. One corner at a time, sort them by usability or sellability.

3. Develop a reasonable selling time table (this alone took three weeks to get down.)

Then I had a break down. It was/is overwhelming to try and get rid of all this STUFF. Now I remember why when I sold the house I just GAVE so much away. Dealing with STUFF is OVERWHELMING. But now, with a pressing need for cash I didn't feel so acutely last summer, I am willing to go where I've never gone before. Selling online. I don't mean I want to open an E-bay store or turn this into a living ... I mean I'm willing to hold an online garage sale for which I have to write pithy descriptions of each item. But I digress.

4. Spring into action. Or, consistently move at a snail's pace which is what living with ME/CFS is all about. Being the tortoise and not the hare ... and realizing there are days when the tortoise pulls in, shuts out and down, and generally makes no movement at all. For days.

5. The E-bay Room now makes sense to me and this is soothing. I have piles of things currently listed. Piles of things I've listed twice, not sold, and will pack again to try again in the fall. Piles of things yet to wash/iron/list. Piles of things not destined for E-bay at all but for area charities. A "sons" pile in which I toss things about which I think I should ask the guys One More Time. Are they SURE they don't want my watercolor pencils or my sealing wax from the 7th grade???? Really???? Does anybody REALLY know what time it is? Does anybody really CARE?

I now have room to walk in and survey my Kingdom of Renewal (or Old Stuff Purgatory depending on my frame of mind/heart.)

5. And repeat.

And Ruth said, "It Is Good."

I am pleased to say I have sold several items on E-bay for more than a consignment shop would have given me. I'm enjoying writing those pithy little descriptions more than I had imagined and fancy myself a writer yet unborn ... J. Peterman catalogs awaiting me, newspapers and online zines banging down my door. And the ability to scream "Get OUT" like Julia Louis-Dreyfus.

The Facial -

Of course we must remember that EXHAUSTION is the hallmark of this PWC so I literally dragged myself to my facial and felt comfortable saying, "I didn't even wash my face." Normally I don't say things like this out loud. Ever.

A Nice Young Woman made me fill out a form that I THOUGHT might include detailed birthing info. about all of the four sons (but didn't) and then helped me hang up my bag and coat (yes, it is March in MI!) I was instructed me to lie down on a draped chaise. No problem there.

She hemmed and hawed and did NOT tell me I looked YOUNG for being 56 and having four adult children. (I did have to write down how many live births I'd had. Guess she's not concerned about that little miscarriage. I still think about him/her though ... and play that "Sliding Doors" game until I remind myself I can drive myself crazy thinking like that.) She asked if I had any problems with my skin. Oh come on. Who likes to admit to their SKIN problems. Wanna talk PROBLEMS? Let's talk ME/CFS. Or diabetes. Or kidney stones. Or aging. Or pretty much ANYTHING ... has she seen the news lately? But she wanted to know about my skin ... which really did make sense given her job. So I offered up, "I get a little dry in the winter." YES. Now she's happy. I have skin issues. YES, my skin is dry because, YES, I am 56 and didn't use the right astringent as a teenager; I used SeaBreeze. YES, I probably don't drink enough water. And, OMG, YES, I picked my zits as a teenager. YES, there IS a scar down there near the bottom of my left (facial) cheek. ARE WE HAPPY NOW? I had a terrible complexion as a teenager (and upon finding my birth family realized this was GENETIC, not from eating chocolate or "doing things to myself" as my mother often suggested. Gutter mind.)

So we agreed upon dry skin and yes ... some clogged pores. Ok. Let's get on with the pampering.

Oh. Not yet. First I learn the difference between black heads and white heads (apparently I HAD both.) Black heads are clogged pores that have sebum built up in them that are EXPOSED TO AIR. (I knew this but didn't interrupt to say so.) White heads, on the other hand ... or chin, as the case may be, are NOT exposed to oxygen because in MY case ... there has been insufficient exfoliation. Good. More skin problems. More products to push.

The Nice Young Woman decided upon what products to use and commenced. This is MUCH better for awhile. She patted, she spritzed, she wrapped (loves me a warm towel!) and then ... she steamed. I lay there quietly trying to encourage myself to enjoy this freebie facial. To relax. To remember to breathe from my diaphragm. And to drink water when I got home.

Until she asked, "How's your pain tolerance?" This gives me pause. Yes, I did put "high" on the four paged questionnaire I filled out. And it is. Four kids, many surgeries, ME/CFS. Yeah. I shoot up w/B-12 every morning. Yeah, I can do pain. Especially when lying in a salon draped with warm towels. Uh huh. Bring it.

And she did. First she went after the white heads in my hair line. MY HAIR LINE? Yes. I now have a blemish free hair line. Next? My chin. No brainer. I knew I had bumps there. I was quick to point out I probably had some white heads hiding in the crevices on either side of my nose. Yup. Those were next to go. I was actually getting into this "cleansing" as was she ... we discussed the condition of my (facial) cheeks as she happily dug into the left one, over and over and over again. Just as I was wondering if my RIGHT (facial) cheek was about to undergo such vigor she asked, "What do you do on your left side?" I dunno. Apparently my right (facial) cheek was unblemished, but the left? Attrocious. Finally she asks me what on side I sleep. Ok, my left. MYSTERY SOLVED. But not until she asks, "Just how much time DO you spend in bed?" This is a dicey question for a PWC. On a good day, maybe 12 hours. On a bad one? 24? 48? More? With potty breaks.

I give up "12" hours a night and keep my eyes closed so I don't have to see her reaction. Then she asks how often I change my pillowcase. Ok. We've discussed my childbearing history, my adolescence, my (H2O) drinking habits, my sleep regime and now my laundry techniques? Will she ask for my home made detergent recipe? REALLY??? I'll admit to once a week, and no, I don't change my pillow case every day. Well ... apparently all the grinding of my middle aged face into a grubby pillow case makes me break out. I find myself mildly jacked up. WHAT? I'm DIRTY? ME??? I mean, I know I am when I don't waste my "spoons" on showers but in general? ME? HECK NO! She herself washes her sheets on Sunday but on Monday flips the pillow over. On Tuesday she turns the pillowcase inside out. On Wednesday she flips the pillow over again. And then .... from Thursday through Saturday nights she sleeps on a DIRTY PILLOWCASE.

I'd have sat up and stared her down if I wasn't in a supine position with her looming over me with an "extraction" device. I will admit she did have great technique. It really didn't hurt very much at all and I was pleased by her audible sighs of relief when she had achieved her mission. I envisioned the clear skin of youth I never had.

One my face was CLEAN I was then exfoliated and masqued. It was lovely. At the end of the hour I actually did book another facial for late April, a week before Mr. Sensitive's college graduation where I will posses a youthful glowing appearance, and I actually DID purchase the exfoliant she recommended as insurance.

Before I left I took a look in the mirror when she was done and thought, "Hey ... you are NOT BAD for 56 and four kids. NOT BAD AT ALL." Then I went next door to TJ Maxx and bought more pillowcases.

Flax Seed and Facials

According to the Everything Good young woman who gives me massages, flax seed comes in two types, "regular" and "golden." Little did I know I actually HAVE both of these in my cupboards.

So today, equipped with slightly more energy than yesterday afternoon, I made flax seed muffins. I omitted the suggestion of the addition of artificially sweetened flavoring and just added more cinnamon, some Stevia, and chopped walnuts. Although Panera Bread and Starbucks will not be beating down the door for my recipe (it's really not MINE) I have already eaten three and still been a "good" diabetic.

These may become a staple around here.

Tomorrow? Either the flax seed crackers or the bread. But I'm thinking the crackers. Both involve parchment paper and a rolling pin, so I'm not THRILLED but something to crunch on besides nuts? A definite possibility.

But now I'm off to get a facial. Yes, a facial. I've technically never had one of these before, but I "won" it in a drawing and am about to drag my achey breaky body out the door. Hopefully it will be relaxing and not involve excessive amounts of exfoliation. Life and my face, are fragile ... they'd better handle me w/care!

Food -

What's up with the love/hate thing most of have with food?

I want to eat well, and I want to eat what I love. Right now that's a contradiction in terms. I live to eat ... and I eat to live, but unfortunately, what I can eat is more and more restricted thanks to ME/CFS, Type 2 diabetes, and being prone to kidney stones.

Pre-kidney stones I had it down ... fairly high protein, fairly low carb. No grains although "seed" flour tends to work pretty well. I recently found muffin, bread, AND flax seed cracker recipes that I'm dying to try if only because I'm dying for a little variety around here.

Dragged myself to the grocery store to get the elusive missing ingredients, dragged myself back and the groceries sit on the table where they'll just have to wait for me to get the energy to put them away.

Baking? Maybe tomorrow. Tonight? Soup with extra veggies thrown in.

The good news is that I WANT to. Sometimes I'm too tired to even have motivation.

Pleasantville, NY

My earliest days as "Ruth" were spent in Pleasantville, NY where my dad worked nearby for the Boy Scouts of America.

I only lived there until I was four although I have some distinct memories ... or at the very least, memories of stories I've been told. I suspect I can remember which are stories and which memories are mine ... as mine just aren't so cute.

1. I had a neighbor from Germany. Her name was Gretchen and her father drove a VW with a stick shift (duh.) Her mother stayed home and had a vast garden and fruit trees. Not too shabby. I was impressed and wanted to have a garden at MY house. We planted rhubarb which I loved w/such great intensity that I ripped it right out of the ground and ate it raw. I never touched the leaves which my mother guaranteed me would kill me INSTANTLY if I ate them. So I threw them aside, shook off the dirt and bit in. Rhubarb. Raw. Yeah.

2. My pediatrician was a woman who lived at the intersection of Martling Ave and Whatever. I don't remember much about her, except she answered all my questions, but I was ASTOUNDED at the fact that every spring she tapped her sugar maple trees and made maple syrup. My daddy would take my up there to watch her and later she would let me watch her boil it on the stove (I would stir) and then take some home for my pancakes. I loved that woman.

3. My best friend was Pammy Barrows whose father was a doctor (apparently there are a lot of those in Westchester Co. How they let a BOY SCOUT in is beyond me, although he was the head of their National AV Dept) Pammy had a COOL mother who let us do all KINDS of things ... like cook, and plant seeds in the ground, and dig in the dirt.

4. My house was on a hill such that the garage was underneath the house. As it was in upstate NY .... my dad had a thing about houses on hills. But I digress. The house had two bedrooms, the one my parents lived in and one over the garage ... which was "saved" for my mother's Son. Where did I sleep, you ask? In a cordoned off area of my parents bedroom.

Here's one of the best stories. For privacy reasons I assume, I was taught, "When the door is closed I am not to go in." Apparently I recited this often, especially when I opened the door. Majorly interruptus.

But I think that's what you get when you decorate and save a bedroom for a child you don't even have; and make the one you do have, despite her gender, sleep in a closet in your own bedroom behind a shower curtain. Yeah.

5. From the back left corner of my fenced in back yard I could see the field where the high school marching band practiced. THIS was most awesome. My dad played many woodwinds and he would hoist me on his shoulders so I could watch ... calling out to him when I'd see or hear a clarinet, an oboe, a saxophone ... never really even thinking that he could see them, too. Nor did he ever tell me. He'd just tell me, "yes, yes, yes ... you have a good ear. You are so talented."

6. My neighbor uphill, to the right of my house, was Jewish and I loved him. Whenever my parents couldn't find me (I had a habit of taking off) they'd look at his house first. Usually I'd be sitting at their kitchen table eating figs and listing to him tell stories of HIS childhood. (Which, compared to mine, was fascinating.)

I supposed I should say that I was a very confident little girl. Overly, in fact, to the point that my dad would tether me to him in crowds as I was likely to go in whatever direction looked most interesting.

Where was my mother? Good question.

7. The Son finally joined the family when I was three. It was the end of the world as I knew it. His arrival involved much fanfare and began the use of his Blue Room Fit for a Prince. All I knew is that my mother was never my mother again. She bragged about how much he needed her. How she had to hold him all the time. She could vacuum with one hand. Fry an egg w/one hand. Change linens with one hand. In the other? Her son.

Cute story time. At one point I had had enough and said quite bluntly, "It's time to take him back now." It was explained to me he wasn't GOING back. I repeated it often enough until reality finally sunk in. My mother had her Son now ... her need for me had been satisfied and discarded. (Ok, that's just sad ... not cute at all. But it is what it is.)

Oh. Did he really "need" her? I think not. What I've learned since is that he, at six months, grieved his own foster family ... particularly the grandmother who held and rocked him all that time. And when he became a drug dealing adolescent? I learned new terms. Reactive attachment disorder. Not mine. His. Yeah. Fry an egg w/one hand. This is something about which to brag? I think not. But she needed to be needed ... and in her mind, with him, she was. What she never seemed to catch on to was that her quiet yet independent daughter needed her too. Maybe even more than a Son who never could attach anyway.

8. My daddy continued to be my Knight in Shining Armor and was until the day he died 2.5 years ago. He took me to concerts in the city, museums, bought me GIGANTIC pretzels and let me squirt the mustard myself. Played house with me. This was HIS favorite memory of our time on Martling Avenue. Playing House w/Ruth. I was never a girly girl and so wondered why on EARTH I'd play HOUSE! He explained it this way. "It was never about playing house. It was about doing it correctly. I'd sit on the couch, you'd sit on my lap and you'd explain it to me. If there came a time you didn't like something you'd said, you'd just change all the rules until it was exactly the way you wanted it. THAT was playing house."

(DYT moment ... when it came to having to pick my "type?" This story came to mind. T4 3 year old.)

9. I vaguely remember the layout of the house. What I mostly remember is that there was one bathroom ... upstairs. The house itself was a bungalow with stairs that turned back on themselves, meaning one could race up a few steps, do the potty dance, and gear up to race up a few steps more. It also gave great meaning to the question, "Do you need to go to the bathroom before you go outside IN YOUR SNOWSUIT?"

10. I do remember "coloring" with wax and stencils on the front windows for holiday decorations, and I know that my "Sunday coat" was burgundy velvet with form fitting leggings I zipped into. Huh. By age four I knew I was totally into clothing ... just not the stuff my mother picked out. Handmedowns from Germany? INCREDIBLE!

11. I loved living outside of NYC. I loved taking the train in with my father and sitting in front of some bandshell listening to music. As I recall a lot of people played the accordion in NY! I loved the smells of NYC in the second half of the 50's. Its elevators with friendly attendants, skating in Rockefeller Center, watching the Nutcracker Suite every Christmas, Barnum and Bailey at Madison Square Gardens, subways, subway TILES. The smells .... hot dogs, pretzels, chestnuts in the winter, steam coming out of grates in the street. Amazing.

And that's pretty much it. What I remember most about Pleasantville is that for the most part, it was indeed, a very pleasant time of life. I also remember it was there that I learned things in my heart that I could not articulate for decades.

But such is the life of a preschooler .... amassing memories and instincts. Pleasantville. Where I began to know my intellectual IQ and my emotional IQ were far, far apart.

And the beat goes on ...

Yes, I turned 56 at some point yesterday. As an adoptee of the mid-50's we don't get to know too much about ourselves, including exactly WHEN we were born. It's an odd feeling as even 21-30 years later after the birth of my own children I can tell you the SECOND they were actually outside in this part of the Universe we call Earth.

The day started with a phone call from My Mother ... who despite oh, 55 rocky years of knowing each other, I love very much. Ironically she at 83 and beginning dementia, and me at 56 with ME/CFS don't lead drastically different lives. Except for the income thing. She wakes up, contemplates GETTING up, showers, dresses, fixes herself breakfast, does what she NEEDS to do, and heads for the oh-so-crucial BLUE CHAIR. Except there are days I can't get up, shower, fix myself breakfast, do what I need to do or anything of the sort. Because ... ME/CFS ain't aging, nor is it dementia where one doesn't realize one is slipping away. I'm well aware of it. I remember that there are things I wanted to do today, or yesterday, or tomorrow ... even well into the summer, yet I know I won't be able to do much of it, or any of it. But I can't remember what I was going to say next. And that's not aging because 56 isn't really THAT old. In fact, according to magazines it might be the new 36 (when I was still changing multiple people's diapers.)

My dear friend called and offered to take me out to lunch to which I replied, "I'm so tired." She offered to bring in a couple of salads, but no ... I rallied. I went out to lunch, pretended I didn't have Type 2 diabetes which I control by my diet and had Basil Bousin Tomato Soup, a grilled cheese sandwich with three kinds of cheese (including Havarti) and a Mocha Torte as my birthday cake. It was lovely. Until I had to get up. It was probably 5 feet from the table to the car (handicapped parking place) but it seems like the 5k I used to run. Marathon Woman no more. Not even 5k Woman.

I rested all afternoon and in the evening talked to one of my favorite four sons for a rather lengthy time. Then, exhausted, I attempted to go to bed. But first? I called Vito ... a calming nighttime ritual (actually I returned his call as the phone call w/the son was of primo importance to me.) And then, I snuggled down into my bed ... talked to God for awhile and promptly did not fall asleep. Some two hours later after I had pondered the future of the Universe (literally,) made a mental list of things I want to sell on e-bay ('Can you say "medical bills?" I knew you could,') and wondered HOW LONG I was going to stay awake I drifted off to sleep for two blissful hours before I was awakened, oh ... just because.

So for a few hours more I tended my imaginary herb garden at my still imaginary barn on some very real lovely property where I hope to GOD I get to actually live. I quasi slept until about 11 AM and then got up. It's a "no shower day" (we folk with ME/CFS guard our strength like a watch dog) and I spent the afternoon photographing clothing I no longer wear because I no longer have a place to wear them on e-bay. I love taking photographs ... and used to be pretty good at it.

Vito took me to a LOVELY butterfly exhibit at a local arboretum of sorts on Saturday ... and I wished I could remember how to work my camera (which is an automatic.) I longed for the days of film where I knew if my light was right for my subject. The Musician has that camera now and I'm thankful to pass on little pieces of me to those I love best. The Sons.

This afternoon another ME/CFS friend called to recount her drive (ride) home from Florida and the subsequent unpacking that needs to be done. A long ride (even when not driving) is enough to drive a PWC to his/her knees let alone contemplating the unpacking.

I did eat half a salad. I did list some items on e-bay. I did put the bills in their appropriate pile and added more to the "call the insurance company about this" pile.

And now I sit. Too tired to pick up. Disgusted not to.

New plan -

I was going to post today about life in Pleasantville (really, I lived in Pleasantville, NY for a portion of my first five years of life) but instead I went to a PROTEST. I love to protest. Almost anything. I never wondered how or why I knew Alpha was going to be a lawyer at age 4. I wish I had already told my STORY but nay ...

I have to introduce my oldest brother to the story now ... but I don't know what to call him. I know what I WANT to call him, but I won't do that. I want to call him "Doctor Such and Such" (seeing as he was a doctor pre-retirement) but what he really is is a Freedom Fighter. So that's what I'm going to call him "The Freedom Fighter." Really. He'll fight for anyone's freedom. Anyone's. I love being his little sister. Love knowing that freedom fighting pours through my veins legitimately. Ok, I was illegitimate technically speaking, but that passion for protesting? In my blood. Hard wired in my brain. Transferred by DNA. Ok. I'm getting all passionate here. ME?

So. My favorite Freedom Fighter lives in a state of unrest. Literally. Happens to be the same state in which Mr. Sensitive goes to college. Freedom Fighter is LOVING both of these things and I bet he's called me more in the past few months than he has in a loooong time. Of course part of it is the brotherly + professional concern over the kidney stone debacle, but most of it? Plain old excitement. He's INVIGORATED by unrest. Loves the Constitution (me too!) and isn't afraid of a night in jail if necessary. But I digress. He calls me to tell me he's going to the capital on Saturday again just to be amongst the throng of the passionate and then tells me about an email he'd received from a mutual friend.

Here be the link: (which I realize you'll have to cut/paste into your url thingy.)

http://www.youtube.com/watch?v=AUpO1QFMDtM&feature=player_embedded

I put off watching it for awhile because, still post-surgery, I'm not sure if it's a good idea for me to get all jacked up about my own state (literally) as I'm in the two categories on the chopping block (elderly and poor.) But nooooooo ... a friend posted it on Facebook where I became unable not to watch. Drawn like a moth to the political flame. My friend wanted to stage an impromptu protest and I posted her link on my page. MUCH flaming occurred (yes, I live on the Red side of the state) but my friend and I soldiered on. She made the signs, sent out emails and after a doctor's appointment I drove down there to get in on the action.

There were just the two of us ... but I'm happy to say no one drove off the road to hit us or gave us the finger. We got many appreciate "thumbs ups" and friendly beeps. If it hadn't been freezing cold I'd have been in heaven. I'm pretty sure this was not heaven (which probably has weather more like CA ... where I've never been either.)

I'm now home on the couch ... and have not listed the requisite number of items on e-bay today (focusing on living light.) BUT, for one hour I was the me I remember the best. The me that is passionate about social justice, the me that thrives on political convos, the me that was up for anything if it sounded "right" to me.

Tomorrow may be payback but that's ok. Chronically living is mostly about life!

So. WHY am I doing this?

Bottom line? I don't want to be forgotten ... and we folk w/invisible disabilities are.

First of all. Let's define disability. I have friends who say, "Yes, yes, we're all disabled in one way or another." Some have ADD, some are diabetic, some have seizure disorders. Oh. Another claims her glaucoma is a disability. Ok. We're all disabled. But what we're all NOT, is able to work 8 hours a day, 5 days a week, 50 weeks a year. I am. This makes me, in the face of the courts, DISABLED. I have a cool license plate to prove it. (Pardon the double negative.)

So. I'm doing this because, although I think I am a GOOD human being, I want to be remembered.

And I want my sons, and their families, to remember who I AM long after I am gone. (even if it's just through words.)

Today, I start w/Day One.

I was born in Manhattan at Le Roi hospital, a lovely place for the upper class. Two days later I was taken out of the arms of my birthmother and placed in a foster home. Why? Because she was not married to The Judge and it would not seem fitting for a person of Position to have an illegitimate child. (Although based on the number of adoptees in my Sunday school class in NJ there was a WHOLE lot of something going on over there in NYC, from whence we came.)

Spence Chapin ... the toniest of adoption agencies in the mid 50's where "good girls" signed over their babies so upper middle class people could buy them. Whoops. Adopt. No credentials needed, a W-2 will be fine, thank you.

But it didn't work that quickly for me and I spent time in the foster care system. I can't find my foster mother, will never know her, but love her from the bottom of my heart (this is something I cannot say about "Babs" but that's another post. Maybe tomorrow if I'm not passing kidney stones through my nose.) WHY do I love this woman? Because she loved me. Fair enough ... she had me preconscious memory, but what I have from her, is a stuffed rabbit that I slept with for years. Purpy Rab (what else does a kid name a purple rabbit?) One could tell he originally had those googlely press-in eyes but she has taken them out and sewn on red buttons instead. Mothers do that. Make thing safe for their kids. This is love. As I would look at him at arm's length I studied him hard, to the point that I can tell you, 55 years after the crime, that she didn't stitch in parallel lines but rather like an "X" which makes them stronger. Hence, safer. Yes. She loved me.

My father (the man who raised me now to be spoken of as Daddy) told me my adoption story as often as I would ask.

He was at "Scout Camp" when they received the call that a baby girl was available. Darn. My mother wanted a boy (another post) but my father insisted. So they raced to NYC where they sat in one room and my foster mother and I both sobbed in one adjacent. My father said he couldn't hear her words distinctly but that it was very obvious she was worried. She wanted me to wear what she had dressed me in and as the agency owned these clothes, I had to wear what my parents had brought. The social worker went back and forth between the room saying as little as possible. (I have little respect for those 50's social workers. Tabla rasa ,my ass.) Eventually my foster mother dressed me in clothing that had not been washed and she worried wold scratch me. I'm telling you, she loved me. And then she handed me over. I'm gonna guess she kissed me a lot before she let go. She took me as a new born and got me all the way into solid food and crawling phase.

When I asked my Daddy what he remembered most about the day he said, "We brought you home (Westchester) and laid you on a green blanket in a Universe you'd never been in before. We called you "Ruth", a name that was new to you. You didn't respond to it but looked up at the ceiling fixture. I flicked it on and off and you roared with laughter. Belly laughter out of this little tiny girl who was too small at birth and had a heart murmur. Belly laughter. I knew I was in love like I'd never been in love before. Belly laughter."

But back to Purpy Rab. Who, having been purchased by my foster mother, was allowed to come "home" with me unlike any clothing I was wearing pre transfer.

Years later a NJ neighbor was a foster mother who fostered one baby after another (no doubt from NYC.) I was most awed that she would take these babies and GIVE THEM AWAY. I mean, how much being given away does one person have to GO THROUGH in their lives? Although I was only in elementary school she would let me hold them, rock them, and play w/them. She would let me kiss them. I asked her if she cried when they were adopted and why didn't SHE adopt them if she loved them so much (these were questions I would have never asked my mother or father ... from whom I tried to shield against Adoption Pain.) She said of COURSE she cried ... every single time, and explained to me that she felt called to love these babies, to give them the BEST start in life she could, and to pray for them forever. I showed her Purpy Rab once (her daughter "Jeffy" was one of my closet friends.) I remember she held him as if he were made of fine china and pronounced him "beautiful." Jeffy's mom was European (French?) and she admired his eyes in particular. She noted the FINE work that had gone into securing his eyes (which were really slightly askew.) He WAS beautiful and still IS beautiful although his fur is all gone and I have repaired one of his ears so many times I won't try again ... because there is simply no fabric through which to stitch. His eyes, however, are still there, solidly sewn. Yes, she loved me.

Purpy Rab used to reside on the bed I made every morning. I had a slick trick down for this bed making (which I found ridiculous.) I'd lay in between the sheets, straighten them out. pull up the bedspread and ssssslip out. Smooth out the top, fold back the pillow area, arrange the pillow, flop, fluff, and then the bed was ready for its final adornment, Purpy Rab.

The greatest angst came when it was time for me to go to college. Purpy Rab and I had never been apart. Only HE could remember from whence I came ... when I was Constance, and not Ruth. How do you leave the only thing who knew you before you did? It was very difficult. In the end, my Daddy helped me decide he was safer at home in my closet than in a college dorm closet. We took a picture of him that I kept in my underwear drawer where no one would look. I didn't look often myself, but yeah ... there were nights I just needed to see his red eyes. Just to know that somewhere, Constance still lived.

And when I married? Frankly, the Professor didn't care. He told me of Bear (for whom he had made a sleeping bag as a child.) Bear lived outside of Chicago in the top drawer of a dresser. Yes, he had been left resting comfortably in his sleeping bag.

Purpy Rab is now in a plastic bag in a plastic tote in a storage unit. Eventually he and his plastic will come live with me in The Barn (ooh, look forward to Barn stories) although I will never again hold him face to face.

My immune system has been rendered "compromised" due to toxic mold exposure and as Purpy Rab lived with me through the floods and later many older apartments and homes, he's toxic. In the most loving of ways. I suppose I could try and wash him ... I have some nifty sporicide that probably has a half life I don't want to know about, but the thought of him disintegrating in the wash is more than I can take. I'd rather have him entombed in a zip loc bag for all eternity.

Yes, I've read "The Velveteen Rabbit" maybe a million times between being a parent and a teacher and yes, I recognize that both Purpy Rab and I have the many, many scars the "real" wear. My own sons, are unimpressed by him. I wish I could say this is because they bare no scars of their own, but I'd be lying. And I don't lie. But my students? There's another story. My students were mostly urban minority kids with their own hard stories to tell ... and every time I'd read "The Velveteen Rabbit" I'd bring in Purpy Rab. The greatest humiliation he ever suffered was disinterest, but the greatest joy he ever brought and received was a from a fifth grade boy in a school where I was substituting for a teacher who had broken her leg. He touched him and cried. Ironically or not, this boy, now young man is my sons' father's wife's child. I don't say step brother. To my knowledge my kids and hers have never slept together under the same roof. The Wifey didn't really want my kids polluting hers. Now THERE'S a post that will go unwritten.

And, a brief DYT fashion report ... after shooting out nine kidney stone shards last night I am attired in a bright red bathrobe adorned with a real live black cat w/a red collar. My very own, Larry. Laurence of 11th St., to be exact ... although his location evolves.

I do, too.