On Mourning

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.

Advertisements

Moonlight Diamond Benedictions, Beauty, and Magick

Pull up a chair, my tribe, and I’ll tell you a story, of the Before Times, which I rarely speak of – of my life before illness, which was an unusual one by anyone’s standards. It is a bitterly cold night here on the Mountain, 8 degrees and snowy, and gazing at that snow, so incredibly fine due to the very cold air, I see it sparkle in the deck lights, and am reminded of another snowy night, so long ago, almost half a lifetime now…

I remember…
…being a single mom living with my 7 year-old daughter in a very poorly-built log cabin, with no running water, in Ohio. I hadn’t planned to be there on my own… a marriage had recently ended badly, leaving me broken-hearted and financially-ruined. I found myself enrolled in college, learning to be a naturalist or forest ranger by day, and returning home in the evenings to a great deal of responsibility… “living rough” had seemed a fine idea when I was married to someone who people compared to the “Marlboro man,” but it was a daunting prospect for a woman alone…

After a long day of college classes that involved much hiking, near sunset on a bitterly cold Winter evening, I wearily climb the steep hill to the cabin, my daughter at my side. It is cold inside, too – the cabin is heated only by a woodstove, and, being incredibly drafty, requires a constant, roaring, fire, but the fire has been banked all day, down to a slow burn. I pile on wood and get it warming up, then move outside to chores as the daylight fades.

I break the ice in my rain barrels, and tend to my two horses, and feed far too many wolves. With what little energy I have left, I scrape together dinner for my daughter, and try to be there for her. I don’t do a very good job. My situation is overwhelming, is desperate, and I don’t know how I will get through it. I am deeply depressed, but trying not to show it.

But after she is tucked in bed, I pull my boots, coat and warmest gloves back on, and go back out into the biting cold to split wood. I have just used up all the already split wood to warm the house for the evening. Cutting and splitting the wood by myself is a never-ending chore, and I cannot get caught up.

The Moon is full and bright overhead, reflecting off the snow, and I can see my way clearly. I have no outside lights, so I glance up, thankful of the Moon’s brilliance. The snow crunches and squeeks under my boots, as it only does when it is so cold. I struggle to put a snow-covered log up on my chopping block. The splitting maul is lifted and brought down on the log with a well-practiced, if exhausted, stroke, and that moment is when the Magick happens, when everything changes…

The snow and ice on the top of the log suddenly explodes up around me in a powder-fine cloud, and every single flake, every single speck, sparkles in the moonlight with glittering rainbows, as it flies up around me and ever, ever, so slowly falls.

It is as if I have been showered with finely ground diamonds, or fairy dust, each speck shimmering with all the shades of the rainbow – deep blue, purple, scarlet red, fire orange – and the bright white of the Moon as they fall.

It is perhaps the most beautiful thing I have ever seen, and all because we were out of wood on a cold winter night.

I stand there in astonishment, as the cloud of glimmering diamond snowdust settles on and around me, and then gaze up at the bright Moon above me.

If I had needed a sign that even in one’s darkest hour there is Beauty, there is Hope, then I had surely been gifted with one, and I had, indeed, needed just such a sign.

It seems it is a fine and beautiful night for chopping wood after all, and I split enough for several days, laughing like a child as the rainbow-sparkling snowdust falls all around me and the glorious Moon shines down from above.

The memory of the unexpected and breathtaking Beauty of that night is a treasured one, and one I think of often. It holds and sustains me through the dark hours, and helps me find the Beauty, Inspiration, and Hope, to keep going… just as it did then.

The Moon is Magick and Mystery,
yes, and so are many other things.
If we but look,
there are signs and guideposts
all around us, pointing the way…
We have only to open our Hearts and truly See.

There, And Back Again

It seems that for us, “when it rains, it hurricanes,” as one friend put it. As most of you know, Rhiannon’s father passed away last week, and we embarked on a daring (for us) journey to Ohio, & back.

I want to thank all of you who have sent messages of love & support to Rhiannon & I, both privately and publicly. I haven’t had the energy to respond to hardly any of them, but please know how much we do appreciate them!

I know many of you have been anxious to know what happened and how we are doing.

After 6 full days & nights away, we are home from Ohio. We left Monday, the 4th, around 6PM, and arrived back Sunday, the 10th, late in the evening.

The dogs were very happy to see us. They didn’t eat the house, and in fact, had stopped eating much of anything at all…

Now…

I am, indeed, very crashed, as many of you worried about. I’m beyond exhausted and stressed out, with viruses (EBV & HSV) flaring, and in post-exertional hell. I somehow never remember quite how bad it feels, how horribly drained I can be, the weakness, the shakiness… but then, I haven’t felt this bad in a long, long time…

Rhiannon, who also has ME/CFS, MPS, and Adrenal Stress Syndrome, is also crashed. She is not as weak as I am, since she’s, thankfully, not as sick as I am. But she’s very tired, and we are both kind of dazed.

Actually, I’m more than dazed… everything that happened is kind of a blur at this point, and this week has been one of resting, trying to conserve every precious drop of energy I have. We had to make one trip out, for groceries & dog food, and I got so shaky & weak that we left before we completed our shopping.

The Journey…

Our journey to Ohio was hard on everyone, not just physically, but also emotionally and mentally, bringing up a lot of old “crap” that we found we weren’t quite done dealing with.

It was also a chance for healing old wounds, renewing bonds of Love & sisterhood, and enjoying the beautiful cliffs & woods & gardens where we stayed, with my wonderful spirit-sister, Kathy.

It was a difficult decision whether to go out at all, considering the strain this was going to put on my fragile body, and whether I could even handle it. This is the longest & farthest away from home I’ve been in almost 6 years, and my condition has gone rapidly downhill the last two years.

We debated it every day as Rhiannon’s father lingered in the in-between state, maintained on life support & unresponsive after having been hospitalized for COPD & pneumonia & then having a heart attack, with brain damage from lack of oxygen. He was 65.

As bits of news made it’s way to us, we got our packing done, and waited for Ben, Rhiannon’s more-than-boyfriend, to finish his classes, so he could do most of the driving, and be there to support Rhiannon.

When it’s difficult on a good day just to spend three hours out grocery shopping, the decision to undertake a journey like this, with a day-long drive (or 2 half-day long drives), heightened-emotions and a heck of a lot of stress thrown in on top of it, is a very serious one. As I said in a message to one friend, “we mustn’t kill Rhia’s mother getting her to her father’s funeral,” and I meant that quite literally.

Discussions were started with Rhiannons’s aunt about funeral arrangements. Rhiannon’s father, Brian, wanted to be buried on his farm, and it would have been fairly easy to do, but in the long run, not a good idea, as the farm will be sold.

Rhiannon found a township cemetary just across the road from the back side of the farm, a beautiful spot (thank you, flicker!), and expressed her desire for burial there, so she could have a place to one day bring Brian’s grandchildren. It was easy to envision this location as her father’s final resting place & a small, informal, memorial service.

There…

11 days ago we headed out, and drove part way the first day. The decision to discontinue life support was made the next day, and Rhiannon’s father died about 4 hours later, about the time we arrived at Kathy’s home & land.

I could, and will try to, write a whole blog post dedicated to the wonderful, warm & loving support with which Kathy & her partner, Constantine, received us. Kathy has been a more-than-friend, a member of my “soul family,” since I was pregnant with Rhiannon. She welcomed us into her home, and provided us with wise counsel & abundant Love when we needed it the most, for which we will be eternally grateful.

I’m pretty certain that without Kathy’s calming, soothing, presence, that I’d be in the hospital right now. Her guidance and support was essential.

Then came more difficult news. Brian’s brother had made the decision to cremate him, and they would spread his ashes on the farm at some date in the future, possibly in the fall.

Rhiannon had come out all that way expecting a funeral, or at least an informal memorial service. We had known that they were considering cremation, but it still hurt.

We made several trips to Brian’s farm, finding things going missing from one trip to the next, and the sheep, which Rhiannon had specifically asked to see, appeared to have been sold & moved the morning after we arrived there. She didn’t get to say goodbye to them, either.

It became clear that we needed to learn about how an estate is settled, how wills & probate work, which is something I’ve never before needed to know. We had a very long visit with an attorney, who is now representing Rhiannon. We believe she is the heir to the estate, or at least that’s what her father told both her & I.

Rhiannon’s aunt has been good about corresponding with me via email, and I have been trying to build some bridges there, because they are her family, and because it is clear that we are going to be working with her and Rhiannon’s uncle for some time.

Almost everything we went expecting – a memorial service, a chance for Rhiannon to see her aunt & uncle, to find some closure, didn’t happen.

But other things, important things, did.

We went because of a death, but we found a new life: a tiny black kitten, by the side of the road near Brian’s farm, with a respiratory infection & lip injury. She came running into Rhiannon’s arms.

With lots of TLC (and food), the kitten is now doing much better. Dusty, Rhiannon’s first cat, is not very welcoming, and Kodi would like to eat it, so we will see.

Kathy holding me tight just before we left for home.

The bond that existed between Kathy & I was reinforced as we spent hours talking, not so much casual “catching up,” as reconnecting, in deep conversation about matters of Life, Spirit, Love, Mother Earth, and much more. We really “see” each other. Namaste, Kathy!

Kathy saying goodbye to Rhiannon & Ben, in front of her new addition.

Rhiannon’s bond with Kathy, who was the midwife’s apprentice at her birth, and so who has known Kathy her whole life, was reaffirmed. They hadn’t seen each other in a long time. They, also, had those deep-connecting conversations. Rhia left inspired by all that Kathy has accomplished, and even more firmly seeing Kathy as her “second mom,” which makes my heart smile.

Poor Ben put up with a lot: Rhiannon & I both blowing off steam & venting, and he missed his high school graduation (that last wasn’t a big deal to him). He was a great support to both of us, and he’s a terrific “kitty-daddy!”

And back again…

We were sad to leave Kathy’s, which felt like home, but our dogs weren’t eating, and it was time.

For now…

I may be very quiet for a while, as flares can & often do last for weeks or even months. I have doctor appointments next week, and appear to have broken a tooth along the way, so there’s that to be dealt with, too.

But even if I’m quiet, I’ll still be thinking about all of you, my friends & family. Thank you again for being there for us, for your words of support & encouragement as we undertook this journey. They meant a great deal to us.

*gentle hugs*

~ Ash