You’ll never know…

…until you have actually and fully been there.

Until you have actually walked this road in a way that leaves the soles of your shoes worn out and developing holes, and your feet blistered and bleeding twice as much as your heart pumps through you and until you have not only seen but had no choice but to actively participate in the sights and scenes DAILY, because there literally was no one else, for so long that you feel like you’re in a Stephen King novel, no – you will never know what it’s really like.

How it can wear you so thin that it nearly destroys you, the way water seems to work like acid and melts cheap toilet paper.

How it can tear you down to a level that you, as compassionate and kind a person you are or try to be, think, “the next time someone tells me I should smile more, or I should look on the bright side (which is what? That eventually she’ll die and I won’t have to do this anymore?) I’m going to punch them in the face.”

How you start avoiding people because you’re sick of their hypocritical judgments and comparisons, OR the way they pretend to understand when you know good and well they have no clue so you just stop talking about it and pretend it’s easy and everything is fine…

100%. Until you’ve done it, you’ll never understand completely what it’s like. I shared a lot of our journey. Even then it was only a fraction and what I did share was picked apart by completely irrelevant, inexperienced people. But I will keep sharing this until we have real reform and raise the standard of care for caregivers and their loved ones with dementia. (Thank you, Martina.)

When my mom died, it broke me. It wasn’t the grief that broke me, it was the RELIEF that broke me. Because I had no idea what to do with it. And I felt guilty for feeling it in the first place.

Finally being able to breathe and stop and rest after SO LONG of being a full time care giver going between two homes and three people (wait, four – but I never really thought of myself, lol) and dealing with doctors and being sick myself…?

THAT almost killed me.

I’m not exaggerating or trying to be dramatic or draw attention, which is what people always love to say when you share thoughts like this (which reallllly doesn’t help so just shut up because that kind of thing can drive someone over an edge you will never understand when they’re grieving loss after caregiving).

I just finished writing a whole chapter about this. Maybe I’ll share it via my blog… For now, here’s the thing I want you to know and remember:

If you’re in a situation like this or are grieving after a situation like this, know that you’re not alone. Know that there ARE those who see you and feel you because they’re there, too, or they’ve been there before.

I pray not one of you ever has to go through it (or go through it again).

If you are forced to go through it, I pray you get the resources you need (financially and otherwise) sooner than a month before your loved one dies because the only thing that finally saves the day is hospice.

I pray if you do face this situation, you have less people than more coming at you with what you need to do and how you need to act but NEVER actually doing anything to help you do what they think you should do and regularly acting the same way you’re acting despite not being in your shoes and instead having everything they could ever want or need.

And I pray that if you ever find yourself in those shoes, you give yourself grace and you forgive yourself daily, before the day begins, for the fact that you’re never going to be perfect. You’re not going to get it right and keep your cool and manage your emotions well EVERY DAY. You’re just not. Period. So accept it and be gentle with yourself and just keep doing the best that you can. You’ve got this. You really do. You don’t think you do or feel that you do, BUT YOU DO. 🙏💜🙏

And if you’ve never been there at this level and never have to be? I pray you don’t take that privilege for granted. Because you ARE privileged.

💜💙💜

Lesson From a Nope Rope

I believe this is a hybrid rattlesnake – the product of a timber rattler and a diamondback. I could be wrong.

So, this is raw. I never edited any of this. I have so much b-roll stuff from our hikes and stuff and I pick and choose bits here and there when I produce something. This is some of that footage that I came across when getting my stuff together for the project I’m working on.

I’m glad I came across this. I’d forgotten about it. It reminded of something about myself that I think a lot of people tend to misjudge. Don’t be led astray by my mostly nice, friendly, patient and overly kind demeanor. Don’t think I’m as ignorant as I might look. Don’t think I don’t know things just because I don’t say them out loud. I’m kind – not stupid. I am not afraid of much, not even poisonous snakes in the grass. Thing is, the worst snakes in the grass are people – it’s really the wrong phrase to use to describe a sneaky, lying, abusive human fool. Kind of an insult to snakes, if you ask me…

You see how calm this nope rope is? Maybe it just ate (doesn’t much look like it). Maybe it was a little cool (doubt it because I was sweating like crazy – this was a humid, warm July morning). Actual snakes don’t want to bother you. They really don’t. Maybe this dude just didn’t feel threatened by me. Animals rarely do. Only God knows why that is. But I can tell you this:

I wasn’t afraid of getting close to this guy, even if maybe I should’ve been, but I also was not stupid enough to try to handle it. No – I’m only that stupid when it comes to people. I never used to be the “once bitten, twice shy” type. I used to let them strike me and just forgive and pretend things were fine. I would give a person every reason to believe in me and make sure they knew that I still believed in them and cared about them. I would be willfully ignorant to the point that I was breaking my own heart.

But you know what people do? Even “family?” They don’t see that. They don’t see your heart. They don’t see your actions. They don’t see what you do for them because you love them. They just see what they want and take it from you and go on. Many times they don’t even need be provoked. They’ll strike out of the blue, with no warning at all – unlike this guy, who would have at least warned me. Thing with people is, you have to let them do it more than once. So don’t let them, because if they continually behave in ways that hurt you and refuse to respect you? They’re never going to change. Have no doubt – I have finally learned that lesson.

Today? Once bitten? I’m absolutely going to be twice shy. Still kind, with the same heart beating inside of me, but I’ll never trust you again. Once I’m done, I’m done. And if I ever reach that point with you, you have only yourself and your own behavior to blame. Just ask my father in law. His life wasn’t in vain. He taught all of us this lesson.

So here’s the thing…

Yesterday I texted a couple of people to tell them directly about my lupus diagnosis and I said, “I win! Yay!” One of them texted me back saying nothing but, “it’s not a game or a competition.” I said, “well I didn’t mean it that way – I sarcastically meant I win at life… Kinda like when I say ‘fuck doctors’ ftw (for the win).”

So here’s the thing…

I say off the cuff, smartass things like that because I feel exactly the opposite – that’s what sarcasm is to me. It’s me being “darkly positive.” It’s me feeling like I’m speaking power into my body and soul to deal with myself. They told me that was unhealthy. I thought, “so is being depressed and/or suicidal but because that can’t be seen it’s not real to you…” Which mindset is healthier? People are funny. Especially when they beat you down for things that are EXACTLY like their own mindset or behavior but it’s fine for them, just not for you. 😂

Anyway, the only other thing they said was that I needed to go raw because that was the only way to eliminate chemicals from my diet and I thought, “yeah, that doesn’t work for me, either.” Do you know how much it costs to eat a raw, actually chemical free diet? We do. We did it for about six months when they told me I had celiac disease. It cost us around $200 a week to buy just groceries and eat/cook from home, and I was the only one eating the “healthy” food while the boys continued to mostly eat their normal, less expensive food.

The point of me mentioning this is to remind you all that the government controls every aspect of our lives for profit. Break it down and you’ll see the proof. They know that they can’t make money off of our health conditions if they make easy solutions to them readily available because then we won’t need medicine. Case in point? Dandelions that grow in your yard and the pesticides to kill them versus the story they feed us about how much more beautiful our yards are to be “weed free.” And we fall for it. Because clearly one of the most beneficial plants for our bodies shouldn’t be allowed to grow in our own yards for free. The FDA doesn’t WANT you to be healthy. It wants you to depend on big pharma and the medical business in America (and around the world) so that people that aren’t meager pheasants can put money in their pockets and keep us pheasants dependent on things we can’t provide for ourselves. Why do you think there are so many laws and restrictions on things that would make living a fully self-sustainable life easy to achieve?

That’s not a conspiracy theory. It’s just common sense. 🤦‍♀️🤷‍♀️ Otherwise, why would diabetes medication and chemo and even some of the meds they want to put me on cost so much that you have to work a second job (like my dad did for years) just to stay alive? That’s why so many people are flocking to alternative lifestyles…

The point is this: I talked about this because I wanted support from my friends to help me deal with the changes ahead, not to be told how to handle it. I’ve got it handled. It’s my body and my life and I’m the only one responsible for making it good. But it’s nice to know that people are there to listen and be a part of your community. That’s why people say, “if you need anything, let me know.” Right? That’s what friends are for. I try to offer support to my friends, no matter what I’m dealing with personally…and lord knows I’ve been dealing with health stuff for a long time. But if you’re someone who I love and care about, I’m ALWAYS there – until you tell me not to be. I’m grateful for the handful of people in my life who are understanding and receptive as well as giving of that…

Rampant Idealistic Oversimplification

This is an example of the rampant idealistic oversimplification that is the new norm in the mental health sphere. It is the equivalent of victim blaming.

Many things cause stress, anxiety and depression. LIFE is just stressful for a lot of people depending on MANY factors. Coffee can cause anxiety all by itself and how many people choose to drink coffee everyday and then wonder why they’re anxious? Depression can be caused by behaviors like this – yes. But it can also be caused by a myriad of other things, including hormones, chemical imbalances, foods we eat (and don’t eat), things we drink (alcohol is a huge one), drugs we take (prescription and illegal, alike), situations we are facing, the list goes on and on.

For some, not even meds can change their brain chemistry. Even though there are coping tools and meds, some people have depression that is literally found to be untreatable even with extensive treatment measures. This is one of those new age bullshit statements made by someone who has no idea what clinical depression is. Statements just like this are the ones that cause many people the most hopelessness because the only solution offered is “it’s your fault, get over it.”

This is a judgement of depression, not a valid statement made based on the understanding of the clinical diagnosis of it. It is the makeup of people who want to come across as enlightened humans, but are really more devolved than evolved. Stop trying to simplify something and tell people basically that it’s their own fault they have these struggles and this is how to fix it.

Stuff like this pisses me off as both a highly educated and qualified mental health professional and as a person who has struggled with depression and anxiety all my life – even as a child as young as 6 years old. If anything outside of the physiological caused it and it was shaped and conditioned into me, it was my mother and religion – point blank period, that’s the only reason. And that’s just simply untrue. Conditioning by our environment may be a part of it but for most people who struggle with anxiety and depression it’s not just environmental and it’s not related to stress alone – stress is a part of EVERYTHING that is wrong with us.

Conditioning may be a major issue for some but what about people who grow up with super amazing childhoods having all their needs met, who are successful and don’t want or need anyone else, who are secure in themselves…and yet still are found dead one day from suicide? What about them? These issues have no limits. They touch people of all circumstances, ethnicities, religions, lifestyles, etc. These conditions don’t care – you can literally have the perfect life and still struggle with these issues.

This type of new age “I know what I’m talking about” expression is the kind of thing can cause someone to truly believe that it’s “their fault” they’re the way they are and if/when they try to address it and it doesn’t work because memes and quotes like this – while true for some situational events – are spreading misinformation (because – let me reiterate in case you didn’t understand the first time – these things are over-simplifying a MAJOR ISSUE that requires a MUCH deeper understanding and often professional help) that may make people just feel like they’ve failed. Then maybe they go kill themselves. Who knows.

Please do not assume you have to conform to generalized thinking. If you are struggling with depression, please please seek help that is useful. I’m not sure the resources in the UK and other countries but here are some US resources. They’re always available and always free, for a start. Please, utilize them. You matter and are cared for, despite feeling that you may not be.

National Suicide Prevention Lifeline – 1-800-273-8255

Crisis Text Line, if you don’t want to speak – text HOME to 741741 for free, 24/7 crisis counseling.

SAMHSA (Substance Abuse and Mental Health Services Administration): 1-800-662-4357

#SpreadMusicNotHate No.2

Day 2 of the #FavoriteSongsChallenge to #spreadmusicnothate: Moonlight (Quasi una Fantasia) in C# (from Beethoven’s 14th Sonata), performed by Fazil Say. I love this version. It’s a favorite classical piece, but this version is beyond moving because of who he is as a musician….the way he plays it…

I love the way he connects with his instrument…how he treats the music as though it is a tangible, material thing. It’s as though he is not only feeling but also respecting the beauty of what is around him, inviting it into existence, communicating with it, cherishing it, unaware that he is creating it with his tool (and what a tool those Steinway and Sons pianos are) and his skill and gift. It’s all an extension of itself, connected by his innermost being. He breathes it from depths only the sound can express, yet it is almost like you can see the music in a literal sense. It’s so ethereal.

I’m moved. What else can I say. I know this sounds wild to a lot of you…but it’s just so profound to me. Anybody can play – just like anybody can take a picture – but it is the heart and the life and the love of the art that makes it different from what “just anybody” can do. This is how I feel with music… he personifies what happens inside me when I listen to it, or make it. He is literally breathing it in, absorbing it. Beautiful music feeds my soul like soul food feeds my stomach. LOL

Beethoven is one of my favorite classical musicians/composers and Moonlight Sonata is one of my favorite of his works. I’ve never had chill bumps from it the way I did when I listened to this and saw him interacting with the music with such grace and feeling. ❤️

I learned…

You have the power to overcome conditioning –
especially conditioning you’ve done to yourself…
Patterns.
Obstacles.
Regrets.
Even fears.
It takes bravery, but it rests within you.
Be compassionate toward yourself,
Believe and see – you have the ability to heal the wounds that bring your anger,
that slice you open,
that feel like ghosts who just won’t follow the light and leave you be…
Forgiveness of self,
understanding is yours…
Now take the reigns and seek the changes,
do not doubt,
do not fear.
Know that you can change these patterns –
thoughts,
wants,
expectations of self…
You can do so much,
you can pray so much,
you can love so much –
others and yourself.
But
life will always happen
on life’s terms.
There is no other way.
Understand that no matter what you have chosen
or what you choose,
what you know,
or think you know,
what you wish for,
or what you loathe,
life will rise and fall,
come and go.
There is true peace to be found,
and felt…
but only within yourself,
and only when you let go and allow it…
only when you give yourself the opportunity
and the gift you need…
Only you know what that is.
It’s the only way.
~C.

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.))

🤷‍♀️