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Veta Collins, beloved Mom

I was doing it wrong, and I knew it. It was one year ago today, my mom had just died, but I wasn’t crying.

“Something’s wrong with me,” I confided, oh so quietly, to those closest to me, a week later. They assured me there was no right way, no wrong way, to grieve. That it would come, when it was time, when I was ready.

Apparently, that time arrived at 9 PM last night. I was thinking about what state of mind I was in a year ago, waiting for The Call to tell me she had passed away.

The dam burst, and finally, the river of tears flowed. I wasn’t just missing her any more – I was mourning.

All day today, I’ve gone through it all again, remembering the sad details of the time between her stroke and her death, writing them out. If I don’t remember them, and acknowledge them, how can I let them go?

I was in a very precarious state, physically, by the time my mom died, two months after a hemorrhagic stroke. Those months were a nightmare, watching my strong, capable, and independent mom being broken into a mere shell of herself. I suspect the mourning got put on hold, subconsciously, so I could recover from the toll the physical, emotional, and mental stress had taken on my own fragile body. Those of us with ME, CFS, fibromyalgia, etc, have to carefully and frugally measure out our energy use, our spoons. (See Always Counting Spoons if you aren’t familiar with this concept).

But there was little I wouldn’t do for my mom. She had always been there for me, through my many mistakes in life, always ready to pick me up and help me out. We were best friends who spoke most every day, and had no secrets.

She was also a real rarity, because she believed in me despite my illness, and supported me both emotionally and financially.

You might think any mother would support a sick daughter, but that’s very sadly untrue when the illness is ME (myalgic encephalomylitis), CFS (chronic fatigue syndrome), fibromyalgia, chronic Lyme. They are not understood even by many doctors other than a few specialists, and family, well, most family members don’t take the time to try to understand. I have a lot of friends ill with the same things, and very few have the support of their families, or only part of the family.

I was so very lucky, to have my mom until she was 89. She was still telling me about any article or show she saw where my illnesses were mentioned, still reading articles about it that I posted on Facebook, trying to understand better. She still listened to me moan and groan and complain when I needed to.

I had her, and I have my youngest daughter, who has a milder version of these damn diseases. She’s my caregiver, my best friend, my defender, intelligent and brave, and with a bit of her grandmother’s iron spine. You don’t want to piss her off anymore than you did my mom – her grandmother taught her well. I have my son-in-law here, too, who very bravely accepted the weight of being part of our family. It’s not an easy thing, being a caregiver to someone like me, mostly bedbound. But such is the power of Love.

I couldn’t get through this life without them, and I don’t know how my friends who have no family support do it.

I’ve been blessed, that’s for sure, and I’m so very thankful for my mom’s steadfast love and support. I will always love her, and I know she’s watching over me, loving me still.

Love never dies.

Shores of Avalon

Reflecting…
In some ways, I was relieved when my mom finally passed away. Seeing her the way she was, two months after a hemorrhagic stroke, ripped my heart out every day. She’d had the stroke in early September, and the months since had been filled with far too few ups, far too many downs, and devastating punches to the gut.

She was only affected physically a little, and that mostly passed. But her mind… That bore the brunt of the bleeding in her brain. That is what haunts me.

Dementia was just a word, without real meaning, until I watched, from a distance, as she slid further and further away. I wanted to go to her, in Houston, but I’m homebound with my own illnesses, and there was no way I could travel.

There were endless phone calls, trying to talk to her, and talking to her doctors, nurses, and my brother and sister-in-law, who were there. Hours spent researching, trying to understand the possibilities for recovery.

More hours went into hacking into her patient record at the hospital, pouring over the flood of lab and test results, learning a whole new area of medical terminology, translating that for family, and relaying it all to my eldest, who was deployed to the middle east.

I’d already spent 4 years being my mom’s patient advocate from a distance, intervening with doctors, calling, faxing, emailing, tracking her labs, researching her meds and demanding changes from doctors who were too busy to spend the time I was.

She was 89 years old. Every problem was written off as “just getting older.” How angry that still makes me. If they’d paid more attention, they’d worked harder to control her blood pressure, and sent her to the ER when her BP was incredibly high and she had a headache, the outcome could have been different.

After the stroke, my brother would bring the iPad to the hospital, so we could do video chats. They were difficult from the start, seeing my mom’s confusion, anxiety, distress, and fear. She didn’t understand that she’d had a stroke, where she was, or what was happening. Sometimes she knew me, sometimes she didn’t. The nurses said she was often combative, angry and afraid, cussing them out while they tried to help.

As the days turned to weeks, getting her to eat, drink, and take her meds, became nearly impossible. She went from hospital to nursing facility and back numerous times, with new issues cropping up, one after the other. She often would wander around, and had many falls.

The last video chat we had haunts me. My brother propped the iPad up on the table, so I felt like I was there, but I don’t think she even looked at me. Her face was gaunt, and her always beautiful skin was marred by large deep purple and green bruises, with more on her arms and legs, from her falls. Her eyes stared blankly, empty except for anger when my brother tried to get her to eat her meds-laced ice cream.

She wasn’t there. The spark of Love and Life that animated my mother, spilled from her over me for my whole life, was gone. I knew she would be appalled at her condition, and would never have wanted to go through all this. I cried that day, to see her so diminished, bruised and battered, who had always been so strong and imposing.

Making the decision to put her in the gentle hands of hospice care that day was easy. The doctors now said she had terminal dementia. Hospice would see that she was comfortable, allowed to slip away naturally.

The day after hospice took over, she went to sleep, and became unresponsive. My brother showed me her nice room on chat, with all her furniture, as she laid still, on the bed. No more IV’s, no more prodding her to eat, no more distress. Resting gently, she slipped deeper and deeper into a coma.

I thought she would pass away quickly after that, but she was stubborn to the end. Every night I went to sleep, so lightly, in case The Call came in. A kind-hearted hospice nurse told me it could “be a while,” and he had one patient who went 33 days in a coma, in what is basically a hibernation state. I had no idea someone could linger that long without water or an IV.

The waiting was hard, and very busy, helping to arrange a funeral in her tiny home town of Loop, TX, and keeping folks aware of developments.

My ill body was not taking all this well, and I was having some major physical issues. Too little sleep, too much laying in bed wondering how she was in the middle of the night, too little eating… I tried desperately to stabilize my own system.

My mom lasted 6 days. The Call I’d been expecting came moments after I woke up on my own, alarmed. We’d both always known when the other was going to call, and this final call was no exception.

Gazing over the mountains my mom had loved so much, I watched the dawn light creep into the day, as I had just enough time to say a final goodbye.

I felt her then, and I’ve felt her presence many times since then. And I always will.
She was truly my guardian angel in life, and nothing’s going to stop her from continuing to look out for me.

This, I know.

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Awake, yet again, in the deep of the night,
I listen to the breeze sigh through the forest leaves,
Sounding like the gentle caress of waves on the shore.
My ever present companion, Kodi,
Lays watchful at the end of the deck,
As I turn to go sit in my porch swing.

A loud snort breaks the silence of the Mountain,
Echoing all around us,
And Kodi is instantly alert and by my side.
A gentle woof escapes his throat.
“We don’t bark at the deer,” I remind him,
But they snort so seldom,
He has forgotten the sound.

We move as one,
My hand resting on his broad back,
To the screened porch,
And I hear the hesitant footfalls of our visitor.
In silence, I illuminate the big doe with my flashlight,
And Kodi and I watch her, together.

She is uncommonly pale,
The color of the deer we call Brazen,
But too skittish to be her.
Perhaps her daughter or sister, I muse.
I see the lines of the old Matriarch,
The biggest doe I’d ever seen,
In this one – the sheer size, large ears.
As she moves off, slowly,
I see she is limping slightly,
As she was a few days ago,
When last I saw her.

Is that why she is alone?
I ask Kodi, who looks at me quizzically,
And sits, faithfully, beside me,
In the dark, quiet, night.
I am never alone.

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Sometimes, the truth hurts. But better the truth, and understanding, than living in confusion & conflict, imposing your values on someone else. For those that this hurts, I’m truly sorry. You’ll just have to believe me that it was as hard for me to write, as it will be for you to read.

I’ve spent much of my life looking for a place to call home. There have been many houses & farms, but I always knew they were temporary, the best we could find at the time, or the best we could afford. But until I found my humble cabin the woods, in my beloved Blue Ridge Mountains, 11 years ago, there weren’t any that were really, truly, home.

I had started to think maybe I would never really understand what it was to love a place so much that it was your heart’s home, that maybe I’d always be a gypsy, staying a few years here, a few years there.  But I’ve lived here longer than I have ever lived anyplace else, and don’t ever want to leave.

I’ve finally set down roots.

Even when I was growing up, where we lived was just a house, though, of course, I would say things like, “Let’s go home,” but it wasn’t home, not in my heart.

I have some vague memories of the house I lived in from 7 to 16 – a large, suburban house, backing up onto a swampy patch of woods. I had everything I could seemingly want: loving parents, clothes, nice furniture, more toys than any kid needs…  but still, it wasn’t my home.

My home was the Woods behind the house.

My spirit-sister, Daphna, and I ran those woods, usually barefoot in all sorts of weather, lest our shoes show we’d been into the “forbidden zone” – the area around the creek we loved, or elsewhere in that muddy patch of forest. We’d stash our shoes under a bush, and take off.

We knew every inch, every corner, every tree. We tracked the raccoons and other critters that lived there. We learned about wild plants; built rafts that always seemed to sink; caught tadpoles; found beautiful stones.

We ran like the wind, or the deer, as only a child can run, with utter freedom and abandon, leaping from rock to rock, and walked fallen tree-bridges, in total confidence, without fear.

But we weren’t supposed to be there. We were under orders to only follow the path that led to the small park, to play on the equipment there. I distinctly remember my mother telling us that if we went to the area of the creek, we might get bitten by a snake, or a rabid raccoon. That didn’t stop us. We went anyway.

I remember very clearly, standing one day on the path that led back to the house, as it started to get dark, when we were due back. Looking up at the house up the hill, I saw not a home, but a box; a prison; confinement; misunderstanding.

I was a round peg being forced into a square hole, and I hated it.

I dreamed of running away, to live in the mountains. Several times a year, we would drive the hour out to the Skyline Drive, which runs atop the Blue Ridge Mountains, and there, that, was my heart’s desire: woods that stretched for miles; babbling creeks; great weathered rocks; the glory of the Fall leaves; the beauty of the Spring flowers; breathtaking sunsets.

I remember being in the back seat of the car, looking out the back window, tears running silently down my cheeks as we would drive back to our house in suburbia.

Without Daphna, and the Woods, I think I would have gone crazy, and when she moved away, when I was 12 (?), it absolutely devastated me. The Woods were totally forbidden to me now – without a friend to go with me, I wasn’t allowed back there.

You can blame it on the Asperger’s if you want. But it was – and is – much more than that. It’s feeling things other people don’t. Remembering lives that happened before this life.

It’s valuing things other people don’t, and not caring at all about what they do.

It’s wanting something totally different from the people around me.

It’s still that way, with a very few exceptions.

After a lifetime of being a gypsy, moving from house to house to house, I finally found my heart’s home, here in my beloved Blue Ridge Mountains. It is only a humble cabin in the Woods, small by many people’s standards, always disastrously messy & cluttered, and often actually quite dirty (in the real dirt sense of the word – my beloved dogs track it in, and without energy to clean…).

But it’s my home, finally, a place I’ve set my roots down, after so many years of searching. A place I’ve set my heart and spirit to rest. And I love it.

Living here isn’t easy, especially for a chronically ill person. The driveway is rough by anyone’s standards, nearly vertical, and impassable in heavy snow. The house is not well insulated, if it’s insulated at all. It was built to be a weekend retreat for suburbanites from DC, not a full time residence. The kitchen is smaller than most bathrooms, which makes cooking in there rather difficult. The paint is peeling, and the siding could use replacing, and the floors could stand to be sanded and re-stained.

But what makes it home is it’s location, in my beloved mountains; the 3 sliding glass doors that open onto the screened in porch and large deck with the breathtaking beauty of the mountains beyond; the open floor-plan & soaring ceilings; the way it sits back from the road, so we have  privacy; the screened in porch that I use for carving my beads, all year long, protected from all but the hardest rains and fiercest winds; the yard the dogs, so absolutely necessary to my life, have easy access to.

It’s the quiet seclusion, so necessary when the almost ever-present migraines strike; the silence, away from sirens, with little traffic, no noisy neighbors.

And even more, it’s the trees in all their Autumn glory; the radiant sunsets that light the whole sky; the deer than amble, unafraid, through the yard; the great weathered stones that are everywhere; the trilliums, lilys, and daffodils we discover in unexpected places;  the violets that blanket the “yard” in Spring; the raspberries that fill our bodies with their all natural goodness; the well water that cleanses and purifies us, and runs through my veins.

What we have here nourishes my soul, feeds my restless spirit.

I wouldn’t trade my home, this land, and these mountains, for all the money in the world, or a million dollar house, or what you may think is an “easier” way to live.

You may not understand, and you may not value what I do.

All I ask is that you accept that I do value this life, here on the Mountain. And that without it, I see little point in going on.

Unless you are as sick as I am, you cannot know what it’s like to live every day, so sick, so tired, in so much pain.

You cannot know how it sucks the soul out of you.

Autumn Sky

Here, I have the chance for the only joy I will ever again experience.

Here, I can turn my head, from my big bed, and look out into the trees, the sky, the sunsets.

Here, the moon shines on me as I sleep; the stars light the sky overhead in a way they never can in the city; the meteors streak through the night and can actually be seen.

Here, I can spend my few minutes out of bed each day watching the ever changing world around me; see the many wild things we share the world with: the spotted fawns, the graceful bucks,  the elusive fox, and thrill at the flight of a hawk high overhead.

Here, I can sit in my hanging chair, on my porch, and rock for as long as I want, totally absorbed in watching the incredible beauty of the world around me.

Here, finally, is the place I call home.

Winter Sunset

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