Devil’s Backbone (Again)

Some shots from Devil’s Backbone…

Also, had this on my mind tonight:

You don’t know what someone is dealing with…what they’re going through. Sometimes a person can be confident and also anxious, look healthy but be sick, look happy and be miserable, look good but feel ugly, act hopeful but feel hopeless, smile and be broken, or never smile at all and be happy… You don’t know. So unless you ask, don’t judge. Don’t assume. Sometimes a person you see every single day or think you know very well can be fighting battles you know nothing about.

Be kind.

It’s Mine, Not Yours…

We live in a society where it’s become more important to look cool and APPEAR happy on social media than it is to be a genuine person. That said, let me just start this post off with the main point and get it over with:  I am unbothered by how bothered people (apparently) are that I have deactivated my Facebook profile.

If it’s that important for people to discuss amongst themselves, to speak ill of it, to assume that it has something to do with them (apparently, several people decided that I had just blocked or removed them and that it was something personal to them), or to assume that my disappearance there (again – it’s not like I don’t take random social media breaks – clearly I take long hiatuses here, too, if you look at my post schedule for the last few years) has something very defining to say about the state of my mental health as though I don’t share openly about not only my mental health but my entire life EVERYWHERE: it’s just not that deep. It’s really not.

Neither my very open sharing nor my random complete vanishing acts are that deep. It’s not a plot, a ploy, or a campaign for or against anything. It’s just me being me, just like for the majority of everyone else it’s just them being them. It’s just being real. Authentic. Me. ((internal scream))

This post is for THOSE people – because those people will be people who know about this blog – and anyone else who ever negatively reacted to or spoke about a person they knew who decided to be “weird,” “mental,” “sensitive,” or viewed as otherwise abnormal because the person – GOD FORBID – deacctivated, deleted, hid, or removed a social media profile.

Honestly. Get over yourselves.

I have long had the open opinion that social media is the devil more than the angel in the “devil/angel/shoulder” triad. I’ve always been super verbal about this. I have also, however, always been a person who subjugated myself to the BS that social media tends to inevitably be and bring because I often feel as though I MUST meet the social requirements of family and friends who “won’t see or know what is going on with the boy” or “in my life” if I’m not on (specifically) Facebook (because, you know, THAT is the one EVERYBODY uses).

Admittedly, and especially during the time that my mom was sick or during times when I’ve had a lot going on emotionally during COVID and isolation, I have spent a lot of time on the book of faces sharing my thoughts and baring my soul. It’s easy to do when you keep a limited friends list (mine has been between 50 and 60 people, mostly family for a few years now).

It always starts the same way when I get back on the social medias: I reactivate or rejoin so that I can be in these groups (mostly private ones) for support around certain causes (with mom it was dementia, and I’ve also been heavily active in other groups about everything from specific mental health issues like anxiety and depressions to coping with alcoholism to photography to coping mechanisms and grief to writing prompts to cleaning tips and online, chronological recipe roledexes)…but I ALWAYS end up wanting to educate my f-list about things or share with people that I THINK are close and real friends (and let’s be fair – 80% are) only to end up offending someone because I have an opinion, EVEN if they agree with the opinion but don’t think it is something I should share on the interwebs.

So, now that an entirely too long preface to the fruit of this post (despite the fact that I started this post with my main point) is finished – clearly, my long form writing is out of practice – let me share with you this glorious, foggy Sunday morning (where I am) my list of 5 things that I have considered at length over recent days and feel that every person should remember (or be reminded not to forget if they haven’t already forgotten these things):

1. Social media is preferred by most to be an illusion of a FAKE existence/reality and you can’t be a genuine and 100% authentic person on social media without being punished or judged by SOMEONE at SOME POINT. End of story.

2. Nobody cares. It sounds apathetic, but it’s true. The majority of people on public social media (not your close friends on your private posts, necessarily) DO NOT CARE about anything you post unless it is a picture of something they find aesthetically pleasing or that they think is hilarious (think, for the most part, kittens and other baby animals). They do not want to read words and they do not care to expand their mind or expound on their thoughts (or yours). Personally, I even (and, frequently) get insulted for USING WORDS, big and small, too much on social media. Go figure, right? ((dry laugh))

3. If you already struggle with mental health issues like depression and anxiety or personal issues like lack of self-esteem, self-confidence or self-love, SOCIAL MEDIA WILL MAKE THOSE ISSUES WORSE and contribute to your pain more than it will help you to face your demons and grow (again, in some cases people have used social media to overcome certain fears and issues, and there are some wonderful private groups on social media and many sites and forums online that are incredibly helpful for some people, but for the most part it (public social media) is not a safe or healthy place for the already struggling mind/psyche).

4. Just like in real life (haha), people do not want you to genuinely love them, genuinely try to get to know them, genuinely take interest in them as an individual human being, or genuinely give them the benefit of the doubt when it comes to what shreds of truth and actuality they share on social media. They just want a lot of likes and compliments.

And, on that same note, those SAME people will be the people who ALWAYS pop up in your comments with some negative or completely abject and contradictory (to their own actual existence – because they’ll basically say that something is OK for them but not for anyone else) stance on posts that (again) really aren’t that deep. “Opinons are like assholes, everybody has one,” and if you don’t want to be shit on? If you’re going through a period where you are feeling less than or a time during which your skin is pretty thin? Stay off of social media.

5. Finally, the last but main point to remember when it comes to being on social media in 2020: at the end of the day, no matter how much you fight and bleed and protest and try to explain to the world through words and pictures what is wrong and how to fix it when it comes to political and social issues? The best way to accomplish that is STILL and always will be grassroots movements and activism, whether through writing or speaking, and otherwise making your voice heard in your own local communities and branching out from there.

You’ve got to remember that social media is just a bunch of noise at this point – a bunch of people with the intellectual advancement of a kindergardener (smart and not so smart kindergardeners) all yelling and raising their voices at once to share opinons, not facts, without first raising their hands and asking questions or hearing the objective opinons and voices of reason from people who know what the hell they are actually talking about.

Sorry, Trump fans, but it’s very much like Trump sitting in a briefing with Dr. Fauci to be briefed about COVID, not paying a lick of attention because he already has his mind made up and believes that he knows everything and doesn’t need one of the top infectious disease doctors in the world to help him (depsite the privilege that that is, in reality), and then getting on the podium in front of the whole nation and rambling on about how he is the most terrific person ever doing all the greatest and most wonderful things, playng down COVID in the few words that he uses to mention it, making a few insults about the intelligence of everyone in the nation for being anxious or afraid concerning COVID, calling leading doctors and professionals unintelligent and telling people to drink clorox (he says it was taken out of context, but…uhhhhh), going back to talking about himself for a bit longer, and then ending on a note of, “you’re stupid, this is not reporting, you’re a moron because you care about facts and not how wonderful I am, sit down, you’re fake news….”

Seriously. That’s what social media has turned into…

And, that’s why I needed a break from it – espeically now, during all of these insane election happenings… I would rather read a 20-minute read time blog post that educates me about something than look at your pointless meme about Trump’s tan or Biden’s age (and information skewing memes about dementia when you’ve never lived with, cared for, or been a caregiver to a person who actually HAS dementia), or waste my time trying to talk to people who are SO comitted to seeing the world in literal black and white and not understanding that there is SO MUCH GREY AREA and so much we can learn from each other’s thoughts and experiences.

Ultimately, for the people who inspired this post? My social media is mine, not yours. And yours is yours and no one else’s, so you should do with yours whatever you well please to do with it but don’t forget the realities shared above and don’t let it stress you out too much…and if it does or it begins to? Write it out elsewhere – in a blog, or even a text to me or a close friend. I mean, really – talk it out, whatever thing is bothering you. You do what you do, but don’t let social media have SO MUCH CONTROL over your life.

Sigh… I hope you’re all doing well. Thank you for listening to (reading) my rant. Please, share your thoughts and experiences in the comments. And? Look for photoblogs and random fun things from me in the coming hours and days. I went so far as to literally run away from my house I was so sick (physically) and stressed out. Minicay = photoblogs for your enjoyment, coming soon…

Death, Grief and Inexplicable Nightmares

Ugh. Nightmares. I’m just about tired of them.

It does NOT phase me to be with someone when they die. I mean, I don’t see it as a negative experience. I’m good at being fully present for another person’s death. I’m good at opening my heart. Letting the energy flow. I’m good at holding hands and holding space and saying the words that you say to dying people, helping them to let go. Lord knows I’ve done it enough times.

It does NOT freak me out or make me uncomfortable to be around dying people. I know it’s part of life. It doesn’t scare me. It doesn’t make me feel weird or distressed.

In fact, death is one of the most peaceful things I’ve ever been around, in the moment that it takes place. It’s the getting there that is hard and sometimes scary and painful. It’s the living part that is hard. And the grieving. The being “left.” Dying? Dying is easy.

Everything goes quiet – even amongst all the noise, whether it’s chaos or just the whines and whooshes of machines that surround it. Everything goes still for that one, solitary moment…the one when you hold your breath as you wait to see if they’re going to take another one…and then, when they don’t…the release of your own long held inhalation.

I have seen them leave, and I always wonder where they go. What’s really next…? Are they still there, in a different plane of existence? Did they see a light? Did they know they were dying? Did they see something beautiful, or did they see nothing at all?

I mean, there are gross things about it – certain smells and things they do sometimes at the moment after dying, as the body releases them…it’s not “pretty” all the time but it’s not…it’s not that terrible to me, that moment. In that moment, they have something I don’t have: real peace, and the knowledge of what comes next. It’s relief. It’s that final endeavor of living.

I find death to be one of the most precious moments you can share with another human being. And so very often, it feels like a gift…

So why these nightmares. Why? My therapist says I’ve been through a multiple year long trauma that ended with holding another person’s hand as they died. I don’t feel like I’ve been through a trauma. I feel like I shouldn’t be having nightmares. Especially not ones in which my kid is dying.

Maybe I AM losing my mind. Maybe it’s the fact that I’m the only one left of that little family unit that was my family unit all my life. No grandparents. No parents. No brothers or sisters…or are there, somewhere? Maybe that’s it… The fact that I was adopted never phased me, until now. I never really had questions. I never really wondered. I just knew that I was blessed to have a home and to be loved. Not that I’m not now… I just…as we ease up on the one month mark since my mom’s death, something weird is happening inside of me.

WTF, dude. I don’t know…

Excerpts from counseling chats, #1

The last few years culminated into feeling like a dream for the last several months – I have literally survived, I realize now, by living in a whole non-reality, on autopilot, and there are very few everyday experiences and mundane daily tasks that I do now without being in an almost confused state. Like, “what is this?” or, “how did I ever do that…I don’t remember…”

I am beginning to realize that I actually exist – and can exist – as a being separate from continuous worry and fear about/for my mother, and I have completely forgotten how to be that person. I still wake up some mornings, if I’m not already at my moms, with this programmed state of, “I have to go check on my mother,” being the first literal and conscious thought in my head. Even if I stay there, which I haven’t been able to peacefully do yet, I find myself in the mindset that I have to get up every few hours to check and feel guilty when I wake up and think I forgot to set alarms to wake up.

Everyone says, “it’s got to be such a relief, though, since she died…” It is, in some ways. But in others, it is the same, just different, level of stress to readjust to “normal,” which is difficult now anyway because WHAT IS NORMAL in a world of COVID? I focus myself on cleaning and doing what needs to be done before anything else (music, photography, etc.) when the things I used to do I was only able to do mindlessly, really – just as a distraction from insanity.

I don’t know if this will make sense to anyone who reads. It has to sound like the ravings of a lunatic mind – but as I’m remembering my intelligent, creative, indulgent, passionate, and subconscious mind I find myself feeling everything from confusion to guilt to elating freedom to even complete blankness and emptiness.

It’s not the grief. Well, it’s partially that but only about 3/4. I don’t know, in this moment, WHAT the word or feeling or experience is. I remember going to through it to some extent after Dorie died and I had been such an integral part of taking care of her, but it wasn’t the same as this, nor was the care.

24/7 worry and anxiety about someone for years, and then 24/7 for months – even to the point of every single daily task they needed to do and then to the point of helping them through every moment of their death…it’s a completely different experience to readjust to existing without that task attached to your back when it was there for so long.

So yeah, you’d think it’d be lighter, more peaceful existence…but it’s actually more like a feeling of chaos. I hope like hell it doesn’t last long. I have too much to do – and, too much I want to do. I assume it will last through and a bit beyond probate because that limits me on the speed at which I can chose to move forward and move on… If it were up to me, I’d snap my fingers and life and the “me” I was “pre-Alzheimer’s parent” would click right back into place.

We don’t get into any state of being in the blink of an eye and we become the next version of ourselves even less quickly, I suppose. That’s been my past experience. So trudge along and get it done, I guess… ((Yawn.))

🤷‍♀️

The End of the Road (Last Blog Before My Mother Died)

TW: the dying experience. Do not read further if you can’t deal with that kind of reality, or if you’ve had a recent loss that this will gnaw at…







Seriously, I’m going to share this reality so don’t keep reading if you’re not comfortable with this type of thing. This is my coping mechanism. To write. To share with those who can handle and understand it. To feel like my support system is with me…







This morning around 3:30am my mom’s oxygen started dropping. First it was 92. Then it was 90. Then it was 88. Then it was 85. She kept yanking the oxygen away. I stuck it in her mouth until the higher dose of morphine kicked in and she relaxed. Then, I put it back in her nose.

I called the after hours line. I was told I was doing everything I needed to be. I mean, it’s kind of common sense at this point, after the others, for me – but that doesn’t mean adrenaline and norepinephrine don’t fly and dopamine and seratonin don’t plummet…and you need that reassurance because you second guess. You feel responsible for more than comfort. You feel responsible for the pain, too. You can’t help it.

I cranked the oxygen up to 3. I started giving half doses of morphine every 30 minutes. Her chest would rise when she gasped, then cave in. Then the fluid rattle started again with her shallow breaths.

She would draw up in a fetal position, moaning and gasping, still with oxygen in her nose but oxygen levels still rising and falling at will because of the mouth breathing and the breath holding and the inability to get enough oxygen with the fluid.

She has not eaten in 12 days. She has not drank in 3 days. She is in the final phase of the dying process. I knew that. I know that. But nothing prepares you for that. I am grateful that she is home, and that I moved here. I am grateful that it is not the nursing home I fought for, or the hospital, where I likely couldn’t be with her…where she would be alone.

I have laid with her – some would say a gift, and I agree…though in the moment it doesn’t feel like one. I suppose it will one day, just like with both my grandmothers, my Daddy, and Dorie, and pets… I held her hand. I cried silent tears, watching her face grimace and her eyes open with the moans only to reveal cloudy, lifeless eyes. I waited patiently for the nurse.

The nurse came at 8:30. Upon assessment, the things are happening. The limbs are cooling. The bp is dropping. The heart rate is rising. The temperature is rising as her core fights to hang on. All the things.

It could be today, it could be three days. It could be a week – probably not longer than that, because of the lack of food and fluid. I have chosen to make her comfort the priority, with oxygen, and liquid morphine and Ativan. Myself and the doctor have chosen to forego the feeding tube, and IV fluids. There is no point in drawing it out, and a DNR is a DNR – all those things are at this point are life support. She doesn’t want that. It’s documented. I will not allow myself to feel guilty for those choices. She made them long ago – not me.

But it’s not easy. It’s not a happy choice. It’s not a good choice, in many’s eyes, I’m sure – but for her it is the right choice. And I will live with having to make it for the rest of my life. But I will also live for the rest of my life, however long or short that may be, knowing I’ve done all I could and what we felt was best for her. She has fought me tooth and nail, even changing the locks to keep me out of the house and away from her business, and now she groans when I’m not there. My, how things change. How they heal. How they induce growth. How they make you a different person.

I have been many different people the past year and a half, through the worst of all of this – some not always graceful, some quite angry, some extremely depressed…and now, regardless of the amount of time left, I feel nothing but…strength. Courage. And love.

I will see you all on the flip side… Love one another. Be kind. And live with an open heart. 🙏❤️