Shiny, New Year


A new year.


2015 was, without question, the worst year of my life.  I managed to keep it together.  I didn’t hurt myself (though I wanted to) or anybody else.  I got up and went to work; I held onto my relationships and wasn’t a complete bitch to the people I love.  I made it work.  I survived.  But it was the worst, saddest, angriest, most heartbreaking year of my life. My mama’s illness shattered me, and her death only made me realize how broken I already was. I didn’t sleep for weeks and felt, day after day, like I simply couldn’t breathe.  I realized I have no idea what I want for myself, now that I can think about myself again.

But it’s a new year.

The memory is never going to be gone, but I have let the pain pass over me and through me and I can move on.

So, in this new year, I am going to start thinking about what I want for myself now.  I’m going to start trying looking for healing, joy, and fulfillment again.  I’m going to fight to get back on the road this blog started with: the road to finding what brings me bliss, to fueling my passions, to chasing my dreams.

To that end, I am pledging to blog, at least once a month, about something that makes me happy. A trip I’ve taken, something I’ve written, or any other thing that has recently brought me joy.  Starting today.

Today I am going to be thankful for my love of the outdoors, the resources I have for enjoying it, and the amazing people I get to enjoy it with.

IMG_20151009_135915116In October, on my first vacation in 2 years, I went camping at Ochlockonee River State Park, not far from home.  I loaded the kayak, the camping gear, and myself, and off I went.  3 days of sleeping in a tent, paddling local rivers, cooking outdoors, hiking, and enjoying the animals.


Rare white squirrel, which we see often in our area.


The Steinhatchee falls (photo by my good friend Jana)

In November, the weekend after Thanksgiving, some of my favorite people and I loaded the kayaks, caravanned for nearly 2 hours south, and paddled down the


My sweetheart & his tie-dyed kaykak.

Steinhatchee river, on one of the prettiest, warmest days we had the entire fall.  It was delightful, and I was reminded how blessed I am to have people I love who love the same things I do and enjoy sharing those things with me.


There’s no such thing as a bad day on the river.

Across the Veil

Slip on across the veil, sweet soul,

She grew up with the circus wintering in her back yard.

She grew up with the circus wintering in her back yard.

It’s an adventure waiting to be;

There are mountains to climb, rivers

To swim, yet wilder vistas to see,

New people to meet, and life renewed,

While this life has been drunk to its leas.


Slip on across the veil, sweet soul,

There are loved ones waiting for you.

Your race is run, your work is done,

There’s nothing vital here left to do.

Beyond now are arms, open wide,

Just longing to embrace you anew.


Slip on across the veil, sweet soul,

Prepare, as well, a safe place for me;

She was one of the most sweetly playful people I've ever known.

She was one of the most sweetly playful people I’ve ever known.

I’ll catch you on the other side

Just an eye-blink and there I will be

When that day comes, rejoicing, we’ll

Be together for eternity.


Slip on the cross the veil, sweet soul,

There is nothing for which you should fear.

You’re already loved by those there,

And will be ever remembered here.

Many eager hearts await you;

Go rest now; your path onward lies clear.


Slip on across the veil, sweet soul,

Worry not for those you leave behind;

We are strong, smart, and united,

We’ve learned to be good and to be kind

Together, so we will move on,

Be well, and keep you ever in mind.


So slip on now across the veil.

I wrote the poem above as I sat, Sunday night, keeping vigil at my mother’s bedside.  Not because I wanted her to leave, but because I was watching her slip away and wanted her to know that she was allowed.  She took her last breath late Monday afternoon as I held the nub of her long-ago-amputated arm, watched over by many of those who loved her best.  While my heart is crushed tonight, hers is at rest.  Wherever she landed, on the other side of death, she’s certainly chasing bubbles and laughing in the eternal sunshine.  She is whole, and the disease which stole her ability to speak and think is nothing more than a hazy memory.

Bye, Mama.  I hope the stories we tell of you as the years pass on are even half as wonderful as you were in real life.  You were the light that guided me and the heart that held me up.  My world will never be the same without you in it, and I already miss you more than I have words to express.

She loved a good reason to dress up, and I think I got my love of costume parties, in part, from her.

She loved a good reason to dress up, and I think I got my love of costume parties, in part, from her.

She could be pensive, and she often didn't share her feelings well.

She could be pensive, and she often didn’t share her feelings well.

Beyond all else, she happily fueled my love of traveling as much as she possibly could.

Beyond all else, she happily fueled my love of traveling as much as she possibly could.

Missing Persons Report

It’s been six weeks since Mom came to live with me. It has been hard. I wrote this piece last week while sitting in my car at lunch. It’s raw, so be warned. I almost didn’t publish it, but then I thought, “I feel constantly alone. I hate feeling like I’m drowning in an uncharted sea, but I doubt I’m the only one. Maybe sharing this will assure someone else they’re not the only one.”

My mother was the most self-sufficient person I know; stubborn, intelligent, painfully self-controlled, independent, and blunt. While she was never a talker, she was always clear and direct about her opinions. She was often judgmental towards her children and family members, yet deeply accepting of strangers and new friends. She had a rich sense of humor, a love of books, and a vast sense of playfulness. She was adventurous and, in many ways, fearless… as long as you didn’t expect her to talk about her feelings or sex.

You, whoever you are, are not my mother. You do not understand the world around you. You cry when you are tired, hungry, or confused. You’re easily frightened and often anxious. You cling to familiar people and don’t venture off on your own. You wear my mother’s face and move around in her body, but you are not my mother. You are a body snatching monster out of the most craven nightmares. You’ve stolen her voice, her thoughts, and her sense of self and left me with an empty shell that still breathes, and eats, and sometimes sleeps, but is most definitely not my mother.

img005Early on Saturday mornings my mother would crawl into bed with me when she heard me stirring, even long after I was an adult. We would snuggle and talk about our plans for the day and laugh together. Many times we squished into the same big chair to watch a movie, or she simply plopped onto my lap for the fun of it. Now, when I hug the body that you are living in, you often laugh uncomfortably and pull away. When you reach out, it’s awkwardly, as though you’re not sure how to be affectionate. You are not my mother.

When Daddy died, my mother turned off the phone, tiptoed around the house, locked the door, and sent away all visitors, protecting me in my grief. She knew me and knew what I needed; 36 hours of peace to sleep and process, to grieve without questions or people demanding attention. Then I could put on my big girl pants and make funeral plans, write an obituary, sort through photos, say goodbye, clean his house, find the money to pay for it all, and do it sanely. She respected me and my need for sanctuary. Now, when I leave the room or close a door or curl up on the floor crying you, body snatching beast, follow me, stare, hover. You, in my mother’s body, crawl out of the bed time and time again each night, turning on lights, shuffling and muttering incomprehensibly, taking things apart, waking me up, stealing my sleep. You, with your lack of thoughtfulness, are not my mother.

My mother taught me to read, letting me cut my literary teeth on Tolkien, Herbert, Asimov, and Lewis when other kids were working on Seuss and Pooh. She pushed me to achieve perfection; to get A’s, not B’s; to get 100’s if I got A’s. In her 50’s, my mother went college. She taught herself to use a computer, conduct research on the internet, write essays, and graduated Suma Cum Laude. We spent hours talking about books, sharing articles on interesting topics, and discussing educational philosophies. She paid her bills on line and lived well in the modern world. You are a stranger. You pick up the books she loved and read the same paragraphs over and over, with no comprehension. You look at a cell phone and laugh when it rings, because you don’t understand what it is. You get lost trying to change TV channels. You are not my mother.

My mother was painfully thin and constantly denied herself foods she actually loved. She only ever ate half of anything (unless it was a box of crackers) and she refused to give in to her sweet tooth most of the time. She starved herself in a strange belief that she needed to be thinner. You will eat anything put in front of you. If it’s a food you really like- or desert- you’ll gorge yourself until you’re nearly sick. You are not my mother.

My mother was competent, spry, and often preternaturally good at managing life on her own, one handed. She could drive a stick shift, sew beautifully, and do just about anything else. She was agile, deft, and a perfectionist. Her life-lesson to me was, “Do it right or don’t bother;” many a time she made me rewash whole loads of dishes because just one wasn’t clean enough or told me, “Good thing we didn’t name you Grace,” when I was clumsy. Not you. You are awkward and incompetent. You do everything ineptly, from eating food to cleaning up after yourself (if you even think of it). You struggle with the simplest of tasks and get frustrated at puzzles and Legos that don’t fit together because you can’t turn them the right way. You are not my mother.

You wear my mother’s beautiful hair, her hands that look so much like my own, her knobby knees and bony feet, but when I look for her eyes, she isn’t there. I don’t see her mind behind the brown irises. All that exists is confusion and you; you who stole her thoughts and devoured her personality. YOU are not my mother, even if the few words you say emerge with her voice. You are an alien living in a body that doesn’t belong to you. You’ve stolen it, and taken my mother away from me. She was my biggest fan, my closest ally, my best friend. It was always my mom I wanted to call first when there was news, and I always wanted her to be happy with me. No longer can I call and tell her about what brings joy to my life or share my worries with her. No longer can I ask her for an opinion or use her as a sounding board for the dreams a girl only shares with the one who loves her best. You are a thief, and I hate you for what you took from my world.

More than one well-meaning person has said, “At least you still have your mom;” “Enjoy her while you can;” “She’s lucky to have you.” I want to scream at them. That’s not my mom. That’s an interloper wearing my mother’s skin. And neither of us is lucky. I have a stranger whose well-being is my responsibility, but how can I take care of a stranger? I don’t know the language you speak. I don’t know how you feel, what you think, what you want, or if my mother is trapped inside the head that you have hijacked. Is she’s simply gone all together? I don’t know how to reach her if she’s in there, and it breaks my heart each time I wonder if she’s cognizant of what is happening. Can she see me trying and failing? Is she as sad as I am?

There is grief but no healing when the door is still open, when I can still see her face and reach out for her hand, only to be met with the lost-rabbit gaze of an impostor. My mother has gone missing, but there’s no report I can file and no one to whom I can turn. I miss her.

Adventures with Mom

In October, we placed my mom in a group home (Wadesboro Place) that we really liked.  It had the right combination of clean, affordable, and the promise of a supervised environment which was definitely needed. The owner/director said they took trips to the library every week and had lots of activities.  We were happy with it up until the last month or so.  Since just before Christmas, the owner has been increasingly distracted and unpleasant.

That unpleasantness reached crisis point this last week. It went something like this:

*phone call at work.*

K: Hey, I just got off the phone with Debi (owner of Wadesboro). She said Mom keeps walking around with out a shirt on.

Me: Ummm…okay.

K: She said one of us needs to go out there.

Me: Why didn’t you just have her put Mom on the phone and talk to her?  That should be all it takes to redirect her.

K: Um… I didn’t think of that.  I’m at the dentist with [my son].

Me: *sigh* Okay.  I’l call Debi.

*call Wadesboro*

D: Evie!  I can’t get your mom to listen.  She keeps coming out in her bra and every time I send her to put a shirt on she comes back with just her bra and sweater again.  I am going to call the ambulance if you can’t come get her.

Me: Wait… call the ambulance?  For what?  She’s not naked.  She’s wearing a sports bra.

D: I can’t have her walking around like that.  I’ve got things to do and I can’t watch her all the time.  You’ve got to do something with her or I’m calling the ambulance.  I’ve got places to be and I can’t deal with her.

Me: She’s wearing a sports bra.  It’s not exactly revealing.  Did you give her a shirt and ask her to put it on?

D: Yes.  Twice.  But I don’t have time to keep telling her, and she keeps just putting on her bra and sweater. I’m calling the ambulance if you’re not coming out here.

Me: What do you expect the ambulance to do?  She’s not naked or sick.  Just put her on the phone and let me talk to her.

Mom: Evie!!

Me: Hey, Mom.  You okay?

Mom: I… maybe?

Me: It sounds like you’re having a strange morning.  Debi tells me you’re walking around in your bra.  That’s not covered enough in the cold.  You need a shirt on.

Mom: I have a shirt.

Me: Okay.  That’s good.  You’ve gotta keep that on, okay?  I’m coming out tonight for bath night, and I’ll see you then.  Okay?

Mom: Okay!  I love you.

Me: Love you, too.  Give Debi the phone please.

D: Are you coming to get her?

Me: No.  I’m at work.  She says she’s wearing a shirt now.  Is she?

D: Yes, but I can’t have her disturbing everyone anymore.  If you’re not coming I’ll have to call the ambulance.

Me: That makes no sense.  She’s wearing a shirt.  She’s not sick or hurt; she just got her wires crossed this morning. I can’t leave work and run out there every time she has a weird moment.  I’ll be out there tonight for a bath and to check on her.  She seems confused but fine.

*30 minutes later; phone call at work*

K: Hey, Evie, I just got off the phone with the sheriff.  He said he can’t Baker Act mom.  She’s calm, complacent, dressed, and not hurting herself or anyone.

Me: Well, duh. Of course he can’t.  Wait, why were you talking to the sheriff?

K: Evidently Debi called him.

Me: What?!?!  Over Mom in her sports bra??

K: Her sports bra?  Debi said she was topless.

Me: Yeah.  Shirtless, but in a sports bra.  She physically can’t pull her bra off without help.  Did you think she was naked?

K: That’s what I thought Debi said.

Me: Ah.  NO.  And by the time I talked to her she was wearing a shirt, too.

K: Then I don’t know what the problem is.  She’s always walked around the house in her sports bra.

Me: I know! Debi has issues.

K: Well, if that’s all it is, then I’m not going out there either.  I told Debi to call me if anything else went wrong.  I’ll call you if anything happens.

Me: Sounds good.  Thanks, bro.

*at lunch*

D: (via text) The EMT’s just left.  Until your mom can be placed in a nursing home, you will need to hire a sitter or have a family member take her. She can’t stay here otherwise.

K: (via text) I’m at the neurologist with Mom.  Debi tried to Baker Act her, but the EMT’s and the sheriff wouldn’t take her. I don’t think she needs to go back there.

Me: WTF!!! On my way. And hell no she’s not going back there.  Debi won’t take her back anyway.

By the end of Wednesday we’d had her seen in the neurologists office, by two social workers, and by a psychiatrist, as well as the initial sheriff and the EMT’s. The nurses, social workers, and doctors all said she was a-okay and Baker Acting wasn’t appropriate.  She is not dangerous.  Not self-harming.  Not sick.  She’s just suffering from dementia and often gets her wires crossed.  Both social workers also suggested that her caregiver wasn’t a safe choice anymore, to which we heartily agreed.

So, now, she’s living with me.  We’ve got her on a waiting list for a nursing home.  We’re starting the application for Medicaid.  We’ve got a case worker from Elder Affairs coming.  She’ll be starting elder daycare soon.  Until then, because I have the most amazing friends in the world, she’s safely spending her days with one of the sweetest girls I know.  She’s eating well, sleeping deeply most of the night, and laughing at everything that strikes her fancy.  She sits quietly for hours reading children’s books and stacking and unstacking Duplo Legos.

Mornings are a challenge.  The first morning was a heartbreaking reminder of what this disease is doing to her brain and body. She was deeply asleep when I called her, and even though she got up and went into the bathroom to brush her teeth, her brain wasn’t yet functioning.  I’ve seen “the jumps” before, but never quite as bad. They’re something between a petite mal seziure and tourettes. This time the toothbrush went flying, the soap rolled into the sink, she leaned forward and grunted, and she almost fell when I tried to get her to sit down.  It took almost an hour for the jumpy arms and legs to calm down and her eyes to start to focus.  The neurologist said it’s a common sign of braid decay progressing, and it breaks my heart.

This is not the adventure I would have asked for, but it’s the one I’ve got.  And I’m growing.  I’ve never been good with patience and compassion.  It’s not how I’m hardwired, but I have a feeling this adventure is going to force me to try.  As hard as it is, as much as I may have to miss out on until we find her a safe, loving, nursing environment, every bit of it will be worth it to know she’s secure and happy.


Oh, to get lost in words

Hours spent immersed, surrounded

By the music of the neighborhood,

Yet deaf and blinded

As words flow through me,

Around me, and in me.

Words grow

Like breathing,

The inhale of reading,

Writing an exhale.

Words are a solace,

A calming of my mind,

A stilling of my soul’s race.

Words fade

As the sun slips into the west,

And, like a diver, I surface

Once more into the world,

My essence a tranquility.

Clean, renewed, I am

Once more, me.


Out-of-Character Political Rant *warning*

Out-of-Character Political Rant *warning*

You know, you constantly hear all kinds of hubub in the media and on-line about this topic or that topic, and it’s usually so politically charged and biased that you can’t figure out if its totally true, entirely false, or just spin loosely based in truth. I usually err on the side of assuming its all codswallop and ignore 90% of it. Today, though, unless the document linked here is the most complicated of hoaxes (seriously, it’s linked directly from the supreme court web site), today’s uproar is actually true, and I have to admit to taking it very personally. READ it (pg 5-6 carry the verdict of the day), then get pissed.

The US supreme court has ruled 5 to 4 that corporations like Hobby Lobby don’t have to provide contraceptive healthcare coverage if it violates their “free exercise of religion”. Because of the way the Healthcare Act appears to be written, ALL forms of birth control- including drugs like RU-486 that terminate an early-stage pregnancy- are to be covered for free and it’s the free coverage of that which Hobby Lobby (where I will never shop again) has protested. The result of the decision appears to be that they don’t have to cover contraceptives at all, rather than that they must write special healthcare plans that do not include the pregnancy-terminating drugs in question (which I actually wouldn’t object to).

No one in mainstream American culture has seriously claimed birth control was morally wrong since 1965. Women here are educated, smart, and capable, and mainstream culture likes it that way, but “people” like this corporation seem to be waging a war against smart, capable, educated, autonomous women who choose not to procreate until they’re ready. Letting women make their own choices and live with them appears to violate some other asshole’s religious freedom, and we can’t have *that*. So they’re trying to stop us from preventing unwanted pregnancies. They certainly don’t want us to terminate them, but sweet baby Jesus knows they’re not going to pay for medicine, food, and college tuition for our 8 kids once they’re here, either. Thanks, bigoted, woman-hating, religious extremists for hammering down one more nail in the coffin-lid of my dying Christianity. May your smart, capable mothers be long-dead so they never had to see what a worthless piece of paleolithic-minded toilet floater you’ve turned out to be.  

And the same goes for you, Supreme Court of the United States, for not telling them to get stuffed over this.    


Kevin's card

Just 5 short years ago, my mama graduated Summa Cum Laude from university, and no daughter has ever been more proud. She did it on her own, and did it well.  Last week, she sent this note to one of my brothers. There can be no clearer evidence of just how much this disease is stealing who she is and how she functions.  This is the woman who read to me as a child, not children’s books, but Tolkien, Lewis, Asimov, Herbert, and more.  Who taught me to read before I even made it to pre-school.  Who instilled in me a love of language and the natural world.  Today, she often writes, reads, and speaks like a child or someone struggling to learn English.

Its so incredibly hard to explain to others the depth of what’s going on, and in some ways even harder to wrap my own head around it.  You spend your whole life seeing your parents one way- the way you did growing up.  I don’t think you ever really expect them to stop being self-sufficient or more full of life-experience and wisdom than you are.  You always expect them to be the ones you go to when you need advice.  Watching my mom so rapidly change into someone who needs our frequent guidance, who writes, speaks, and even behaves so much more child-like, is deeply saddening.

There’s an incredible bi-polar pull on my heartstrings.  One half of me carries a fiercely protective instinct toward her, just as I would with a child.  The other half of me both resents that I need to take care of things for her and fears that she hates it, too.  I would; in her shoes I’d be so, so very angry.  And I know her- she’s always been so independent that the idea of being watched over and policed all the time should be maddening.  It doesn’t seem to be, though.  So far, she’s been… passive, distressingly so.  That loss of confident autonomy is just as sad as her loss of language.

I suppose the plus side is that, so far, she seems not unhappy.  With any grace, as this disease steals her cognition of language, it will also steal her awareness of what she is losing.  While that doesn’t make it easier for those who love her, knowing she’s not suffering the same heartbreak would be a relief.