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.))

🤷‍♀️

Dementia, a Mother, and an Adopted Child

**Edit: my mother passed away 26 hours after I posted this.**

About five months ago, my mother was mentally bad and had wandered and broken her arm. Three and a half months ago I brought her home from the hospital. For years before this, from about six months after my dad died, I had struggled and fought for her and tried to care for her but she didn’t want to let me. I heard, “I am FINE,” at least 72,000,000 times. We had all made jokes about her condition – jokes about “NaNa” – jokes about how bad she was getting, “but there was nothing we could do…” Yet, I still fought…and I know those battles, and they’re why I’m here tonight.

I wish we hadn’t done that…made jokes, because it’s not funny. But I’m glad I never stopped fighting, even if we never had the mother/daughter relationship I always wished we’d had and even if I didn’t get her the help she needed WHEN she needed it because of a broken system that doesn’t correctly diagnose dementia/Alzheimer’s until it’s too late to really slow it down. It shouldn’t be this way – not with the research and the knowledge we have, medicine we have, and resources we have in this country.

I am at peace with the fact that I did my best – that I did everything I could. I don’t need to be externally validated for that…but it makes me feel and have almost a need to validate others who are or have been or will be in my shoes. All these years…they’ve culminated so quickly – in just a matter of weeks.

Three months ago, my mom looked like this (first photo) when I picked her up from the hospital. Tonight, she looks like this (second photo), grimacing and clenching in pain, almost choking on even oral liquid Ativan and Morphine, and her own phlegm and fluid, coughing like a weak squirrel, moaning and crying out in pain to the God that she believes in and still praying incessantly (again, quietly like a weak squirrel, but in pain all the same, barely able to verbalize it).

Dementia and Alzheimer’s are considered mental health issues and illnesses. Don’t tell me you can’t SEE IT because “it’s a mental disorder.” You CAN see it, right there on the MRI. Don’t tell me it’s not real or difficult or physically painful because it’s JUST a “mental disorder.” That’s what I was told for so many years – she’s just getting older. She’s just getting forgetful. She’s just having “mental problems” because of age. No – not just mental problems. A DISEASE – and a terminal one at that.

And you know what else? Especially if you’re a doctor? Don’t pretend to care when you don’t. When you belittle. When you get annoyed with children who are fighting for a better life and end for the parents. Don’t pretend to advocate because for the moment you feel sorry for someone. Don’t pretend like you’re Gucci just because you give to this or that charity or “buy your way” out of having to actually GIVE CARE.

You know what means even more than your charity checks and your “honest opinions” to families struggling with ANY illness or disease or end of life process when you follow up your explanations with the words, “we care?” When you SHOW THE FUCK UP for them.

I am showing up, mama, and even when you don’t want me here, here is where I will be. Too little too late to heal all the old wounds, but not too late to SEE that bygones can be bygones, and despite all of our bad times, all of the good you’ve done for me.

I’m so sorry for the hell, all the chaos I brought to you. I’m sorry for all the hurtful words and for all the times I fought you. I’m sorry I’m not the daughter you’d always hoped I’d be, playing the philharmonic or writing novels or preaching the gospel…but so many of the good things I am are things that you taught me.

“I didn’t carry you in my belly for nine months, but I carried you in my heart for a lifetime,” is what you’d often say to me…and that “to do your best and leave the rest,” was sometimes the only way to be. These words I’ve never forgotten and these words I’ll never forget.

I will soon, again, be an orphan, a fate you once saved me from…and with these fleeting last moments I am sorry. I know I was wrong. I’ll always be a daddy’s girl, and this always broke your heart…but the reality I thought you lived in was creating jealousy into art. But I always had a mom…

I understand your love tonight and what made you who you are…and that even though we aren’t the same we aren’t that far apart. I want to say, “it’s ok, let go,” though it truly breaks my heart…because I understand after all these years who you really are.

Rest now, precious woman, I know you did your best…and your best was really always enough, though I often put you to the test. I thought you didn’t love me, but you just loved me in your way…and, “rest now, precious woman,” is all I can seem to say…

What the “Bad Apple” Analogy REALLY Taught Me

It might be one thirty in the morning but it is still Sunday, so Reverend Sister Christy is going to preach. We having church.

Today’s topic is: Don’t give up a good apple in your life just because you see a blemish and mistake it for a worm.

Misery may love company. But you know what miserable people really want? To be heard even in their silence. To be cared about even when they’re misunderstood. To be thought of even though they may not want to be seen. Even if they can’t or don’t want to express themselves or respond…they need to know they still matter, not tossed to the side because they or their struggles make you uncomfortable.

Why? Because disconnection is not humanly reasonable even if a human being doesn’t have the ability to express themselves – and all people are not going to express themselves in ways you can understand when they DO express themselves. We are meant to be a collective, supporting each other, even if it’s just with a comforting smile and soft eyes, or a simple, “Hey there, I was thinking about you and I’m here if you need me.”

People don’t necessarily always want or know how to express themselves. They may not necessarily want that. But what everyone wants and needs, whether they express it or not, is to have the option.

So get down off your high horse, Herod Agrippas of the world, and sit down and LET PEOPLE BE EXPRESSIVE in whatever ways they can be even if you can’t understand those expressions – and as long as they’re not abusing you in any way, if you don’t have anything nice to say or don’t know what to say? Just say so.

Stop punishing people just because you have your own issues and double standards, Herod Agrippas of the world. Get rid of those double standards, and if you have your own issues? Work on them rather than personifying them.

I won’t even say “as long as they’re not hurting you,” because you know what? SOMETIMES THE TRUTH HURTS. Abuse is different. But just because someone’s behavior or choices bothers you, or you don’t agree with them, doesn’t make them invalid or constitute a behaviors they should be punished for by someone with their own flaws and faults. NONE of us are perfect – and for all who would argue that the biblical God was, he himself was not perfect and he KNEW that after he screwed up “man” (see https://lifehopeandtruth.com/god/who-is-god/genesis-6/).

Here’s the thing: You aren’t living someone else’s experience. THEY ARE. So be kind in the ways you can be, even if it is to explain to them that you can’t be of help to them. Be thoughtful. Add some good to the world by shutting up and just offering to listen, even if they don’t want to talk. TRUST ME – that matters. It counts. It’s worth the effort in the long term, even if it angers them or seemingly stresses them, if you truly care for them.

No. Don’t give up a good apple in your life just because you see a blemish and mistake it for a worm.

Therapy.

Therapy used to be the bane of my existence. Now that I have the best therapist on the planet (for me) via BetterHelp, it’s not so bad. The whole thing revolves around my time schedule – which can be pretty chaotic – and finally finding (or being gifted by the universe?) a therapist who GETS ME is priceless.

That said, it doesn’t change my thoughts or feelings. It helps me to express them in a safer environment than any other, but the reality is that my kind of depression doesn’t ever really go away. It’s up and down, it doesn’t flip but it rises and falls. And with my mom? It’s basically a pit of hell.

I think the thing that brings me down the most is watching this all play out and not being able to do a damned thing about it. Dementia is like that. No matter what you do, it’s gonna progress. Maybe slowly, maybe quickly. Maybe meds help. They don’t if you’re fighting with the person to even take them.

Mostly, the whole situation makes me both miss AND respect my dad so much more. Sometimes I am so angry that he is gone. Most of the time time I’m just sad. Sad at a level that isn’t just melancholy or blue, but at a level that is a thunderstorm – dark clouds and pouring rain, raging winds and thunder in my head. Sad at a level that I can barely breathe through these days.

But here I am. That counts for something, I suppose. Even still, I feel so useless to everyone around me. I feel useless to my mom because she won’t LET me be useful to her. I feel useless to everyone else because, well, depression. I just stay in my room, and read. I cry but I don’t know why as it doesn’t really let anything out. I wish that someday I would be able to find the words to describe this experience just in case I make it past it and have an opportunity to help someone else.

I hope you all have a pleasant weekend. I appreciate your correspondences and your kindness more than you know. You help me more than you know.

All the love,

C.

A Lifetime Ago

11 years ago today, where we used to live in Coosa County. Actually this was taken in 2004 but I edited it and posted it 11 years ago today.

A lot of days I miss it. Not today, but a lot of days. I’m also very grateful for where we are now in many ways. Especially with depression, but maybe for everyone, peace comes and goes.

I see people strive so hard to attain peace when the reality is that it just comes and goes. Sometimes, it’s even harder to attain when you’re working so hard to find it. Sometimes, most of the time, if it’s to be had it’s just right there within. That’s been my experience.

We are human. It’s hard to be at peace in a world where you see so much that is wrong – abused children and elderly and animals and women and even men, hell, people in general. Wars. TRUMP. Capitalism. Most everyone getting the short end of a very fucked up stick… Yes – if you have any compassion or heart at all, if you care anything at all about others, it’s very hard to live in this world and have a constant feeling of peace.

But, we can speak kindly, offer a hand, take responsibility and apologize when we have not behaved our best, and do our best not to be a part of the problem. Of course we always will be because for most of us there is no way not to be a consumer. But you get what I’m saying, right? Peace comes and goes. Good times and bad times fluctuate – just like weight and the economy and lots of other things.

The only certain thing for me is that one day I’ll be dead and a few generations after that I’ll be forgotten and cease to matter. I intend to make it count while I’m here – and that’s what we did back then. I’m grateful to be where I am today. I wouldn’t trade a thing for my child. But the days back when this was taken? Not even gonna lie. Best days of my life.

Nothing can beat the freedom of that life. The people I had around me. The beauty and seclusion of where I lived. The lack of worry and responsibility for another human being…. Easy times. And we knew it. And we lived it to the fullest. And I’m grateful for every memory and experience. ❤️❤️

I hope that you have a lovely day today…

All the love,

C.

Signs and Encouragement

My friend Dawn shared a video that touches on something that I have been considering and trying to figure out how to express for a long time. Thank you so much for sharing this, Dawn. I have had SUCH turmoil in my spirit for SO long about the things shared in this video – and now, that’s just gone.

Before 2015, and even for a short time after my father died – while I was still in denial – I was who and what Dawn expresses throughout this video. I believed. I didn’t believe in religion – I had already fought my battles with that and overcome and undone the hold religion had had on me as a child and teenager, because of the way it was so misused and so abusive and manipulative. I had not (and still have not) completely overcome the trauma of that abuse, but I am much farther down the road of recovery. I didn’t believe in “that” God – but in the Source. A higher power. An energy. And I believed in signs.

I believed in our ability as humans to connect with higher spiritual energies and forces and to receive guidance and to guide others. I knew that I had a gift and that I always had – I was able to understand that part of the reason I was so strongly opposed to religion was that I had always been more connected to that source than to buildings and books and that the source was found in the natural world that I had adored and revered throughout my life. I believed in the power of nature to heal, to guide, to teach, and to comfort. I believed in life, and not death.

I had faith – so much faith. I was positive and more happy and at peace with life and with myself than I had ever been, and all just felt right. Real. And yes, peaceful, even in times of pain and struggle. Even though I was at this place and knew I had been awakened and was living with my eyes and my heart open, I struggled with the physical complication of depression and anxiety – not because I didn’t believe in good or higher power or whatever you want to label it but because my body didn’t manage its chemicals very well.

When my best friend was diagnosed with cancer, and I was going through a loss of a different kind along with that terrifying and excruciating experience with my best friend, I held fast to my faith despite the creeping depression. My father died unexpectedly one week after the one year anniversary of her diagnosis with terminal cancer, and I continued to hold fast, knowing that he had been prepared and ready for his own death for some time. He had struggled and suffered for many years, and though his death was unexpected (diabetic coma leading to stroke and then to the sepsis which eventually shut down his body one organ at a time over the course of five days), he was at rest. At peace.

For another 8 months my best friend fought and struggled and suffered, and I was there. I was there until she pushed me away and asked me not to be. She did this with many, to be fair – she was afraid, she lost her ability to cope, and instead of realizing t was a brain tumor and fear speaking for her I believed it was what she really wanted and thought I was respecting her wishes. Weeks went by and during this time my faith began to waiver and my grip began to loosen on that rope that had always held me through those difficult times. She passed away 8 months to the day that we buried my father, and in that moment, part of my soul quite literally died along with her.

Since then I have struggled. I slipped so far down that taking my own life was an option and something I planned out and would have followed through with and completed had something inside me not spoken up and cried out to my husband for help. I don’t know why that happened, aside from my fear of leaving my son without a mother and destroying him, but it did happen and because of his help, and my willingness to fight a really fucked up system, I was able to finally get the help and the medication that I desperately needed. I still struggle. I still rarely leave my home. But in so many ways, I AM better.

In the spiritual areas, though? I have continued to struggle the hardest there. To founder. To nearly drown only to be held afloat by the tiniest life preserver with the thinnest thread attaching it to me. That life preserver has been comprised of my son, of music, of art and photography, and my unwillingness to just pretend like I’ve been ok. I found more strength in vulnerability and allowing myself to share my reality than in “faking it.” Only through doing that was I able to cross paths with some of the most healing people I’ve had touch my life in the past year. People who have encouraged me to continue to share and to have faith and hope, if not in healing, and the possibility of mending and growing and learning to live with the ache of grief, loss, and the “not understanding” or not having the answers or the closure I thought I needed.

Dawn has always been one of those people, and I am so grateful. Even though Dawn and I may be on slightly different paths in career and life in general in many ways, we also share things in common that connect us in very special ways – cancer, loss, grief, “the struggle,” seeking the way (whatever that may be for each of us) – and, what she expresses here about “giving it all away” is so accurate and in tune with where I am…

And that is the other issue that’s been weighing on me: the issue of why I give away (or dump out, as someone once said to me, and I can’t help but laugh at that because it’s so close to true so much of the time) so much stuff – just give it away with no real concern about marketing it or branding it or selling it. “Why do you just give all this creativity and energy away for free? You don’t even try to gain followers or build your brand.”

Because…I don’t want to. I create for the same reason that I breathe. I don’t WANT to make money from it. Making money from it takes away the spiritual connection and soul that I want to express. I LIKE giving myself away, as it were. I LIKE sharing myself and my creative stuff.

I used to like working on computers and tinkering and writing weird programs and so on, and then when I let people convince me to turn it into a career the heart got lost. It became stress. The same thing happened with my photography. I let people convince me to “work harder” and to get into shows and to build a site to sell it and so on, and it became stress instead of joy.

I don’t need to sell these things and I don’t want to sell them. I don’t feel like they can be valued by a price tag and that if they are then it somehow takes away from the true value of what is there. You can’t put a price tag on peace – your own or anyone else’s. It is PRICELESS. And if anything I have to offer can bring that to me or to anyone who shares in my creative endeavors, it’s absolutely worth the “freedom” – at many levels.

Ultimately, as Dawn shares, it’s healing for me to “give it away” because it’s healing for me to create – it’s my PURPOSE to create. I’m going to create regardless and if I feel that giving it away and even just possibly being of help to someone else, even if inadvertently, can be a part of that process…well, why shouldn’t that be free? A lack of monetary value doesn’t make that worth nothing. At least, not in my soul…

Sharing is priceless. It helps me to believe – and it helps me to believe even more when other people cross paths with me via my creative sharing and say, “hey, I believe, too!” or better yet, “hey, I know the struggle so well but I’m hanging on, too. Let’s hang on together. Let’s learn together. Let’s share. Let’s grow together.” Those people exist. Many of you who are regular readers of my blogs, or listeners of my music, or followers of my photography, have shared with me that you are those people.

While I love that others find success in selling their creativity and I even often purchase it from them, it’s just not something I want to do with the things I share creatively online. I need that connection – at least right now, that connection is worth far more to me than money ever will be. I want to be better. I am, at this time, extremely blessed to be able to survive and work on becoming better and not worry whether there will be food in our mouths or clothes on our backs or a roof over our heads without me having to sell my soul to cover it. I am so thankful for that – for my family.

I’m SO grateful that Dawn’s shared this and that it’s available for me to share with you. This has been on my heart for so long and I’ve not been able to figure it out until now. Thank you again, Dawn. So much!!

I encourage you to watch Dawn’s video and listen to her story, which you can do by clicking here. In many ways – especially the spiritual things she speaks about – it mirrors who I was and who I am re-becoming. It inspires me to continue to seek my own heart and hear it, as well as that of whatever this higher power has to offer me.

I hope that you will find some inspiration or encouragement in it, as well…

All the love,

C.

Don’t Be Embarrassed | A Fibro Post

I read a great article tonight about fibromyalgia and it showed me something very important. I am reactive because I am embarrassed and ashamed.

Here’s the article:

Fibromyalgia and complex trauma are connected in so many ways. Do you deal with any of these symptoms?

22 “Embarrassing” Symptoms of Fibro That We Don’t Talk About

I don’t deal with all of these, but I do deal with many of them.

For me the most embarrassing thing (and the thing I get defensive about, and now thanks to this article I realize and accept that it’s because I AM embarrassed) is that I’m “too young” to have ANY of these issues.

People who don’t understand this kind of illness look at me like I’m nuts when I talk about my pain or my exhaustion, and tell them that those things are part of the reason I don’t go out much, but the MAIN reason behind my anxiety is that I don’t want to puke or get a messed up tummy in public.

I don’t make a lot of plans and I really don’t leave the house very much because between CPTSD and these symptoms, my anxiety is constantly through the roof – which leads to regular panic attacks and to depression in itself, in its own way, on top of “regular” depression.

I was recently diagnosed with both Celiac disease and major depressive disorder and put on a whole new cocktail of medication for depression (celiac is only treatable by diet, basically). And as the article says, all the meds have their own symptoms. But it makes me crazy and embarrassed when people say, “you’re not even 40 – you can’t possibly have that many health problems.”

They often have the same reaction – you’re just making excuses. It’s SO embarrassing when they say that it’s just nerves because I’m too young for any of that stuff. And it’s disheartening when they say things like, “you’re just not trying.” Like, you have to be 50+ to be excused of these symptoms.

I fall down every so often because of my joints and I often have a hard time keeping my balance. Sometimes I think people probably think I’m drunk. That’s ok, because that’s how it feels.

I also drop things CONSTANTLY because of sudden weakness in my hands and random shakiness. I have turned into Miss McButterfingers. That’s hugely embarrassing to me – especially when you drop the same thing like 7 times in a row before you finally have a grip on it.

And, the worst thing at home (which causes some tension in my relationship) is that my brain doesn’t work. Literally, if it’s not music I can’t focus and I’ll forget what I’m doing while I’m doing it. Even reading a book takes ages now because my brain can’t comprehend what I’m reading half the time. Homeschooling is SO complicated, even though I have notes and a curriculum to follow with my son.

Even writing blogs and these posts here, I have to read and fix them a few times (and usually still have errors I see and fix later). That’s hard because I love to write. I hardly blog anymore because of it. This post alone took over 45 minutes to write. That’s ok – insomnia means I have nothing better to do at nearly midnight. ((thumbs up!))

It complicates everything. It even effects friendships – but it’s generally me, not them. It effects moods and the way I process and see things…as well as how I react, often…to many things. Those who stick around, well, I don’t know why they do. It really is (and I am) too much for people. So…such is life.

I don’t share this to complain or to simply verbalize my experience. This has been therapeutic. These are real issues and I’m grateful to have read this article with quotes from people who go through the same things.

It doesn’t matter how old you are, how much money you have, what your ethnicity is, where you live, what you look like…having any chronic illness is HARD. It’s good to feel united with others who deal with these issues even if it’s just in an article on the internet.

If you are one of the many, many people who struggle with chronic illness, you are not alone. I see you when you’re invisible, I hear you when you’re silently struggling.

I support you and believe in you.

Lots of love,

C.