Looking Forward (Or Deja Vu?)

You never know where the road is going to take you. Be careful with yourself. Don’t abuse yourself or others, or take your body (or life) for granted.

One day you may be in a situation where you don’t know what’s next for it – and whether you believe me or not, or like it or not, or think it’s a dramatic statement or not, I don’t care – it’s a terrifying and uncomfortable place to be, especially when you have small children.

It’s funny how you can be considering the future, looking forward and not behind, but feel as though you are watching your past happen all over again – and you never expected it and thought you’d done everything to prevent it from ever being this way again. Well. When it comes to the body, and to life, really, sometimes things just happen.

Sometimes things happen and they’re scary and they’re hard and you can’t talk about it because…well, no one will understand and you don’t want anyone to act a certain way, or maybe you just don’t want to be vulnerable because you’re already possibly more vulnerable than many people assume.

You don’t mean to be vague but you are just doing the best you can to process your own existence – and you have no clue. None. Not even a tiny one. You’re just waiting. You’re waiting because it’s deja vu and you know what happened then; but, it’s also a different experience and you know it’s “now,” not “then,” but you’re gun-shy from the last experience…so time is the only source of answers, if time or answers even exist.

Life is like driving a car. You can drive all you want, but you never really have power or control over anything. Forces far greater than you do – and sometimes they’re not kind. And, if you think you do have everything under control? It’s an illusion.

Don’t delude yourself. You’re going to be in a world of hurt at some point, if you do. Don’t forget that when you dance, eventually you have to pay the band.

Don’t assume you know people. Don’t assume you know what’s going on in their life. Don’t judge based on what you THINK you know, because in reality? You don’t know squat except about yourself. Focus on that, unless you do know facts and you can be of some emotional or physical help in someone’s life.

That’s what the last few years have taught me, in being treated like crap, and allowing myself to be used by people and abused by the medical system. Did it make me stronger? Wiser? Yes. Did it hurt? Badly? Also, absolutely yes.

Don’t be a selfish jerk. Do good. Be gentle. Be compassionate. Be kind. Do all those things for yourself and for others. Make it a great day. I love you all. ❤️

~C.

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.

💜💙💜

Another Spirit Dream

From my dream journal (01/12/22), for those who don’t believe that working on your spirit self and spiritual focus opens doors for a spirit to communicate and that you can actually hear them:

I have never been a skeptic because as a child I always had experiences and while the belief system I grew up in called that, “evil,” I never stopped communicating. I never stopped hearing or seeing. I never stopped believing. In fact, they believed it, too – they just contradicted themselves with double standards like, “spirits are evil,” but, “we worship the Father, the Son (let’s be real, SUN), and the HOLY SPIRIT.” No, I never “let it be,” I just learned to be quieter about it. I have, since my mid-20’s, learned how to speak up again.

My Daddy came to me last night. I didn’t want to wake up, if I’m honest. I never want those dreams to end. They’re few and far between as I continue to heal and grow, so I savor them. This one was different than most, and thankfully not the recurring psychological nightmare that I had for months after he died and that still comes around every so often.

In this one, we were in some strange, very flat place that reminded me very much of the plains, and there were animals everywhere. My father loved all animals, so it makes sense that he would appear in a spiritual way surrounded by them. It was like a cross between Kansas (not “Wizard of Oz” Kansas, more like agriculturally beautiful Kansas) and Noah’s Ark. Very weird to me, that, because my dad loved woods and mountains. “Whatever,” I thought, just being so happy to see him.

He apologized for some things – namely leaving me with the burden that was mama after he died, gave me this motivational speech about not beating myself up anymore and knowing that she was happy there (she was quietly waving from the background, which would in life be be quintessentially my mom if my dad was around) and that my hands had been tied in both situations.

He told me that I had actually fared much better than I imagined that I did. That was something I had needed to hear specifically from him since my mother died, though I hadn’t realized it until I awoke from this dream. I have dealt with a lot of guilt since my mom died, surrounding that. He told me that I was in a place most people don’t find themselves in when he died – young, career and goal driven, raising a child, and managing my mom (which he knew about when he fell into this coma, but hadn’t told me, and I didn’t realize it until she died and I found and read things he had written) while he was, for lack of a better phrase, literally rotting away in the hospital bed.

Bit of backstory: his feet were dead (literally) and about to fall off (metaphorically) when I signed to remove life support. They were scary and disgusting to see – they were freezing cold, solid blue and black because of his kidneys shutting down, and they’d stopped dialysis because they were getting ready to move him to another unit to remove life support, AND YET THEY WANTED TO AMPUTATE THEM.

In this dream he laughed his truest laugh, which had a deep, guttural beginning and ended with a more high pitched, fast paced giggle, and he said to me that he heard me say to the doctor, “are you out of your mind? What’s the point in that? You’re an idiot if you think I’m going to approve of you chopping his feet off when he’s about to die anyway. Why don’t you go fix somebody who can be saved instead of trying to rip off more money from my family and his insurance company? He fought to make it this long with both of his massive, size 15 diabetic feet and he’s managed to keep all but a single toe. You’re not cutting a damned thing off except this ventilator tomorrow so that he can finally be at peace.”

He quoted that to me verbatim, and thanked me for standing up for his feet, semi-pun intended because he was goofy like that with his dad jokes. I forgot I had even said that to that doctor, but upon waking I remembered it vividly and I remember being so angry that they wanted to argue with me about it and my mom wasn’t there. You see, she wasn’t there most of the time after the first day, but I had left only once (even showering in the shower of his CCU room) and when I did leave that one time, I didn’t want to.

It was only because she had asked me to come back to their house to get things FOR HER so she wouldn’t HAVE to leave that I had left, and then she left anyway. She would come for a couple of hours a day. She almost slept through his passing and J had to force her to understand what was happening. I was FURIOUS. I realize now that it was because she was already sick with the late-early stages of dementia then (hence the stuff I later read that my father had been taking notes on), and that’s why the doctors pulled me aside to that cold, dreary “counsel room” with her and told me that I had to make all the decisions and tried to explain that to her. Terrible experience.

I remembered the anger at him not taking care of himself better, in my eyes just willingly giving up his life and that somehow meant he didn’t love me as much as I thought he did. I remembered believing that if he’d loved me the way he had made me believe he did, he wouldn’t have treated himself so poorly. Flash forward to the last couple of years and what I have put my own son through with my health. That’s a bitter pill to swallow.

I also remembered something I didn’t consciously know existed: the resentment I had toward my mom because she thought he was just sleeping and left him for two more hours and when she came back to check, he had seized and stroked and there was no bringing him back after that. They tried. I pushed them. I argued. But I finally had to accept that they couldn’t fix his brain and he was never leaving that CCU bed. After five excruciating days of denial, I had to let him go, and I had to make that decision alone. I realized that I was SO ANGRY at my mother for being the reason we were there and for being sick and making me have to choose.

For what it’s worth, here I will insert the inspirational realization I had and the absolute fact that NO MATTER HOW IN CONTROL YOU THINK YOU ARE OF EVERYTHING IN LIFE, YOU ARE NEVER IN CONTROL OF ANYTHING. PERIOD. END OF STORY. More on that later…I digress.

I remembered so many things when I woke up, details I think I had purposely blocked and I think my dad triggered them on purpose, even though they are SO difficult to think about, because after all of his preaching (sweetly) to me in the dream, he said to me, “when you wake up, turn on the radio and don’t you stop singing, girl. Don’t you DARE avoid the one thing that makes you feel true purpose just because of some certain things you might hear that hurt you! Let the hurt drive you!” He was irritated about that because music had always been our most powerful bonding agent (again, upon waking and considering it, I realized I haven’t made music in three or more months)…and then he sang to me.

I knew he was getting ready to leave me then. He always sings to me right before he leaves me in dreams. He sang the bridge of this old song called, “I’m Moving On,” by Rascal Flatts. There is one lyric that is supposed to go, “And I have made up my mind that those days are gone,” but he sang it, “Girl, make up your mind that those days are gone.”

“Well, I’ve been working on it,” I thought, “but anyway, point taken.” He somehow remixed into “Let It Hurt” as he turned and was walking away. He was apparently on a Rascal Flatts kick (yeah, he listened to stuff besides WDJC – a local Christian only radio station – when my mom wasn’t around…he listened to EVERYTHING, especially musical theater stuff).

Anyway, so I turn on the radio – yes, an actual radio app and not Spotify or Apple Music on shuffle – as I was getting coffee ready and guess what song was playing and barely into the first verse when I chose the radio station and it finally tuned in? Yep. ⬇️

So, there’s that… I listened intently, and of course I shed tears when that certain part of the song arrived, and I sang it just like he had, using the rewording of the lyrics he had used. I went on with my day. I say with it for a long moment.

I showered, I did a few things in the bedroom and moved on to the kitchen where I washed the dishes and cleaned the counters (I do this ritualistically every morning and most nights, now that the kid is older and dirtying so many dishes with his “bottomless pit” eating habits…). And then, I sat down to write this. I listened to the other song Daddy was singing/humming in the dream as he was leaving before I opened WordPress, and I took it in – as difficult as it is for me to listen to that song lately, for a number of reasons), and I cried some more. And as those tears flowed, so did my words begin to…and here we are.

Grief is like a strange and living creature, and it’s grips are never ending once it touches you (though it waxes and wanes in its intensity), but so are those soul connections that we think we can’t live without. Whether we lose them through death or living circumstances, the universe knows what it’s doing. That’s what you need to take away from this post. And, I think that’s where I’ll end this one.

Sit with your grief. Let it do its job. Allow yourself the gift that grief really is, even though you may not realize it’s a gift at all right now… One day, you will make friends with it. Eventually, it will cease to be a monster and become a friendly companion that helps you rather than tortures you. But you have to allow that transfiguration to take place, and in your own time you will…because it is an inevitable process.

I know that if you’re struggling with grief, you’re going to be ok. One day, if you just keep going, you’ll know it, too. You’ll look in the mirror and see yourself and just as suddenly as you didn’t recognize who you were seeing at some point after grief came, you’ll begin to see yourself again, and you’ll realize that all along your grief was there to help you. I know it may sound crazy, but I promise you, it’s true.

“May not be what you want, but it’s what you need
Sometimes the only way around it
Is to let love do it’s work
So go on
Yeah, let it hurt…”

Love to you all.

~C.

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…

When Mother’s Day Hurts

My mother in law was just here and I know what’s wrong with me – it’s Mother’s Day. It came out of nowhere – like a deer in the night trying to cross the road or a tornado that has no sign of existing but suddenly does, and drops directly onto your house. And of course this has nothing do with her or her bringing it up – it’s just the way I feel, and that’s mine to own.

Mother’s Day has been a big deal for me all my life. When my mother in law mentioned it was like I felt a knife in my heart, all the way through my back, and radiating throughout my whole being. I hate feeling so deeply. I wish I didn’t feel at all sometimes – I would rather be dead inside than feel at the depths that I do – for many reasons, but this is a prime example. I wish I could be heartless like other people are sometimes.

My adult lifelong best friend and I used to “uncelebrate” it, Mother’s Day. Different reasons but…that was our whole thing every Mother’s Day. It got super hard after she died because she knew all the details of why it was so difficult for me and she got it – and vice versa. Now, with my mother gone, and this idea I have in my head that my birth mother is probably dead, too, and all hope is forever lost of finding her – that makes me have even more questions…I think about all the miscarriages…and it all hurts…

I know this is like three weeks away but it’s like…I can’t explain. And I wish I could. I wish I could find words. I wish I could talk it out. Write it out. Music it out. Art it out. Ride it out. Run it out. Drive it out. Kill it. I feel like a shell. And yes, of course, it will pass. But please be kind to those who are hurting on Mother’s Day.

Don’t remind them they have at least the child/children they do (that’s actually feeling like the HARDEST part of this year’s upcoming Mother’s Day for me – BEING a mom on Mother’s Day, because I don’t want to be reminded of it and I feel guilt for that, on top of everything else I’m feeling). Don’t minimize it. Don’t belittle them. Don’t try to fix it, either. Just let them hurt and be there for them. Don’t pour salt in their wounds by saying all the cliche things. They know what they still have but it doesn’t invalidate what they’re missing, or what they’re feeling.

I know many of you are going to struggle with Mother’s Day this year – and many of you have for years already. Please…just be kind to yourself. Try to be graceful with yourself. Don’t go to the what if’s and the I should haves and all the thoughts. Let yourself grieve whatever you need to grieve. Honor your heart and your feelings in whatever way you need to (for me it’ll likely be writing and/or music). Just…love yourself gently, and try to remember that you’re not alone. ❤️

When Mother’s Day Hurts