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.

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Saving Myself By Saving a Dog

This story starts with a dog, and ends with another. It’s long, and touches on sensitive subjects, with raw, open, honesty. The last 10 months have been quite a journey, full of sorrow, shock, a moment of extreme clarity, a lot of contemplation, reflection, unexpected dreams, and then resolution, when the dream became reality.

It started with watching the slow decline of our elderly dog, Kasha, who had a number of health issues. The most difficult was degenerative disc disease, and as last summer turned to fall, she was having increasing difficulties controlling her rear legs.

Then came a shocking phone call, when I found out my spinal x-rays didn’t show the herniated disc I expected, but instead showed that I, too, have, “severe multilevel degenerative disc disease,” on top of everything else.

I was caught way off guard. I had been working on the premise that I am going to get the ME/CFS under control, using all my supplements, and that one day, once I figure out these migraines or get thru perimenopause, I was going to be back to some semblance of myself – I know there’s damage that will always be there, but I think there’s a lot that can be fixed, too, slowly, over time.

But, it’s basically going to be with me the rest of my life. There are a few things I can do, some supplements and maybe some physical therapy, and I’ve gotten a TENS unit that helps. But my spine is very unstable – I’ve been going through periods for two years, where I “throw my back out,” and I can feel the discs moving out of place, and pain and sciatica flares like a bonfire.

After absorbing this news, I walked out into the living room to find that Kasha had lost control of her bowels, and there was a trail of poop leading through the living room and onto the porch. She was lying there looking so very ashamed.

It triggered a moment of extreme clarity, a frozen moment in time, where I knew two things for certain:

Kasha was at her “red line,” the place where dogs with degenerative disc disease are no longer recoverable – it was not going to go away with rest and time, and was going to be the end of her, and soon.

And just as clearly, I felt that I, too, now have a red line, though I’m not to it yet. My mind played it out for me… me with a walker, or in a wheelchair, although I don’t know how I could even use either because of a torn up shoulder, and the weakness and utter exhaustion of ME, CFS, fibromyalgia, etc.

There was the feeling of a door slamming shut in my mind, those images simply shut out. I won’t, I simply can’t, live in a condition where I’m bed bound and need a wheelchair just to get around. And I won’t be that kind of burden on Rhiannon and Ben, either.

I wasn’t afraid.
I wasn’t sad.
I felt acceptance.
And, much to my dismay, I felt relieved.
Relieved, because the long fight would be over. I didn’t realise how very tired of the constant struggle I was.

I didn’t so much as make a decision as have one thrust on me from deep in my soul. Just as Kasha would find her peaceful end, in a beautiful, sacred, manner, when the pain became too much and when she couldn’t rise, I too, would find that place.

I have many friends, fellow patients, who have to use wheelchairs or walkers or scooters, and I have the utmost respect for them.

But that’s simply not something I can accept.
I have been sick for more than 17 years, and almost entirely housebound for 10 years.
I cannot accept any further limitations on my ability to move around.

I am meant to roam mountains and walk through my beloved woods.
I am meant to be a wild thing, and I can barely take the captivity I have already been in for much longer.
I am the wolf, tightly caged, pacing back and forth, going slowly crazy from my longing to be free.

But here was this realization that I wasn’t ever going to go running barefoot again, through the golden autumn woods calling to my Heart that day, because my spine is simply too unstable. That’s a huge and terrible loss, and the shattering of all the dreams and plans I’ve been holding on to… I wanted to get well enough to be able to help some of my dearest friends, my soul sisters with ME, CFS, fibromyalgia, etc, maybe share a house with them, all of us working to heal each other.

I watched each day as Kasha had a few ups and lots of downs, and it was like watching a train wreck in slow motion, knowing it was heading my way…

In the months since that moment of clarity, and through Kasha’s gentle passing, the sacredness of her death, a gentle release with mercy, I’ve spent many sleepless nights, thinking about just what I wanted to do, and how much fight was left in me for this new, seemingly insurmountable, challenge to my health and my life. There are things I want to do, and things I need to do.

And then along came some dreams, and some info about dogs, that had me reevaluating how long I am willing to fight to go on.

Twenty years ago, living in fear from a relationship gone terribly bad, I lay awake in bed at night, too stressed and worried to sleep. I found solace in meditation and visualization (shamanic journeying). Usually, I would “go” to a beautiful forest at night, and run as a wolf until I finally curled up, safe, in my den. I’d fade off to sleep that way.

But one night, instead of being in my forest, I found myself high on a rocky outcropping, in a sea of rippling sand. I could see in every direction around me, see that I was safe. I laid down in the sand, pulled my cloak around me, and felt desert winds deposit a soft blanket of sand on me. For years, every night, I went to the desert to sleep.

I studied the desert as it is today, and as it was. I drove my family crazy with my sudden obsession with the desert. I didn’t explain that the desert had come to me, unexpectedly, but it was saving my sanity.

The decades passed, and I eventually went back to my forest – until my moment of clarity. Ever since then, every night, I retreat to incredible vistas of desert dunes, open caves and hidden chambers. This time, though, there is something else there with me: a lean desert dog, colored the same as the sand, and with electric eyes that look right through me. I know the feel of her soft ears, and my fingers remember the shape of her head under my hand.

Salukis, a beautiful desert Sighthound, have fascinated me since the desert came to me. They are perhaps the oldest of all dog breeds, and the only type of dog who was not seen as “unclean.” Desert nomads have cherished the Saluki for thousands of years. I’ve wanted to have a Saluki or Saluki mix for 20 years.

But now, through chance, I learned that most people in the middle east treat dogs in horrible, horrifying, ways. They do not value them as we do. Many Salukis and other dogs are simply dumped in the desert when the owner tires of them, or if a racing Saluki doesn’t run fast enough. Some racing Salukis have their ears cropped off “to make them run faster.”  The Salukis have bred with the many other dumped dogs, and now “desert dogs” are pretty much a breed of their own – small Sighthounds, usually with short fur and tails that spiral into a curl.

The pictures are terrible to see. Dogs so emaciated you can’t believe they are alive, or who’ve been viciously beaten, or thrown out of a moving car, leaving them with broken legs. Dogs who have been shot by the police, in front of children, when an area has too many strays. Dogs beaten with stones by children, who know no better. Need I go on?

It broke my heart.

The question changed from “when” to give up the fight, to a very simple, “do I want to die without first rescuing a desert dog? Or do I want to hold on long enough to rescue my dream dog, a true desert dog, and experience her life with me?”

Adopting a dog from the middle east can be somewhat complicated, but there are many groups and individuals there, mostly westerners, who are involved in rescuing the ones they can, fostering them a time, then finding them new homes in the U.S. and Europe. Some send the dogs to the U.S. first, and then put them up for adoption, and others work directly with those wishing to adopt.

I began watching the various groups on Facebook in late winter, and the number of dogs needing new homes is overwhelming. But if I was to rescue one, it had to be the one from my dreams…

And then, there she was. A desert dog with electric, topaz blue eyes, just as I’d been dreaming of. I really didn’t think she could exist. But she does.

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Ellie is about one year old, and was found dumped to starve or fend for herself. Despite that, I hear she’s an incredibly loving and gentle dog. She’s not too big, and not too small, either, weighing in at 40 pounds.

After weeks of working on arrangements, my Ellie will be flying from Dubai, in the UAE, home to me on Monday, June 27. What a birthday present!

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For me, Ellie is Hope – hope that I will have improvements in my health, and she is incentive to keep on fighting, keep on going, no matter how hard it sometimes is. By fulfilling my dream of having a desert dog, my motivation and inspiration to keep moving forward to experience her whole life with her is immensely boosted. That’s just how much I love dogs.

I’ve also become close friends with Ellie’s amazing rescuer, Charlotte, and with Marci, who is practically a one woman whirlwind of dog rescuing in Al Ain, UAE. I am completely in awe of what they are doing, and will be forever grateful for all the hours of work, time and money, that went into getting Ellie cleared to fly and come home to me.

I’ve set up a fledgling Facebook page for them, in the hope of helping other dogs find homes. It gives me inspiration, to know that I can still do something with my life, even if all that it takes is monitoring a Facebook page. I’m not completely useless, after all.

I believe everything happens for a reason. It was not coincidence that I learned about the desperate conditions for dogs in the middle east, and it was not coincidence that Ellie showed up in need of a home, the dog from my dreams, one I didn’t think could possibly exist.

Ellie of the Topaz Eyes is the fulfillment of a 20 year long dream. If she can happen, what else might be waiting around the corner? All I know is that I have Hope again.

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“Chronic. Fatigue. Syndrome. It’s An Illness.” – May 12: ME/CFS Awareness Day

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I went to my PCP (that’s Primary Care Provider for those who don’t know) last week for my monthly visit, and a new nurse takes me back to the room. It went something like this…

Her: “You’re here for a follow-up for…?”

Me: Chronic fatigue Syndrome.

Her: Oh, fatigue. So you’re tired a lot.
(As she starts looking for the computer’s questionnaire for “fatigue” patients…)

Me: No. Chronic. Fatigue. Syndrome. It’s an illness, and it’s in there.

She continues sorting through, finally finds it, where I helpfully point out it’s listed as just “Chronic Fatigue,” but reassure her it has the right questions. The screen is huge, and I’ve done this so very many times…

She begins reading through the questionnaire the computer provides:

Her: And when did this start?

Me: 1999
(by now I know she’s NOT in the right place, she’s doing a new patient questionnaire, not a follow-up…)(sigh)

Her: And what brought this on: stress, viral infection, accident, yada yada yada…

Me: (hard stare)
Me: (thinking: do I really want or need to get into this with this ignorant nurse who couldn’t care less? I have a blazing migraine and ear infection and just want to see my most excellent doctor. I am not in the mood to patiently educate yet another nurse today.)
Me: Possibly a lot of things, but even scientists don’t know for sure what causes it.

Her: (she looks up briefly, startled)
Her: Oh… Is it relapsing, constant, or getting worse?

Me: Constantly getting worse.

Her: Are your symptoms worse after physical activity?

Me: Oh, are they ever.

Her: And do you have: unrefreshing sleep… impaired cognitive ability… decrease in activity level that interferes with normal activities… migraines or other headaches… muscle pain… weakness… gastrointestinal pain or bloating… etc etc etc

She glances over and sees me nodding my head, yes, to everything.

Her voice has gotten softer and lower as she’s moved down the list, and she trails off before she gets to the end. She wound up not asking me all the questions, and I should know, having done this once a month for years.

Me: I can make it easy for you. I have every single one of the dozens of symptoms on the list, with exception of diarrhea.

She looks at me with surprise.

Me: Next section: Yes, medications help, to some extent, but not enough.
Me: Yes, they cause lots of side effects, such as nausea, heartburn, headaches, etc. I take meds to deal with the side effects of my meds, but no, it’s not nearly enough. I’ve been housebound since 2007.

Me: Next section: yes, I’ve tried supplements and they do help, as does meditation, massage, and physical therapy. Acupuncture was questionable.

She is busy clicking boxes.

I really couldn’t tell, when she left, if she was upset at the thought of an illness that she’d never heard of causing such issues for such a long time, if she was overwhelmed, or just didn’t care. She didn’t look up when she stammered, “I hope you get to feeling better soon.” But as I reflect back on it, her shoulders were hunched, and she kinda looked like a dog who has been beaten… or maybe like someone about to cry. I honestly don’t know. I wasn’t mean or snippy, I was just matter-of-fact.

This is what it is.

I rested my blazing head down on the edge of the table, closed my eyes against the too-bright lights, and practiced my deep breathing while I waited for my doctor to come in. I couldn’t wait to get back home, away from the lights, the ordinary sounds of life, that brought such searing pain to my oversensitive brain, back into my girl cave and the dark and quiet… one breath, one moment, at a time… but how I longed to set foot in a store, or just ride in the car without sunglasses and a scarf over my eyes…

But, This is what it is.

And what it is, is known as Chronic Fatigue Syndrome in the U.S., although in other countries – and by the WHO – what I have is ME: Myalgic Encephalomylitis.
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