I have no idea who I even am anymore…nor, who I wish to be.
Over a year ago, I did something I never thought I’d have to do. Because doctors were not helping me with my mother (who has dementia and is getting worse), I contacted adult protective services on my own to beg for help. The state came through, albeit an extremely slow process. They sent a wonderful man by the name of Mr. Hardin out to my mom’s home to evaluate things and he immediately agreed, upon meeting my mom and seeing the state of what I was dealing with (alone, as an only child), that I needed and deserved help in dealing with her.
That day back in January of 2018, I started a process of trying to get guardianship of my mother. Not something fun. Not a responsibility any human being really “wants” to have, but one that I knew in my heart was necessary. Now, we have reached a point where I need conservatorship, as well. And this is posing a problem at a number of levels. Alas, the doctors have all finally come through and given the state the information, documentation, and support that was needed to start a court case and here we are.
Except, today I found out that there is a thing called a “conservatorship bond,” and it’s something I have to not only pay for myself (which is hilarious because the reason for filing for legal guardianship and conservatorship for my mom is mostly financial – or the lack of finances, rather, for being able to put her into a better living situation with round the clock care or even in home care) but also something I have to qualify for based on my credit history. My credit history is not perfect, I’m not ashamed to say, because of student loans (which I have recently managed to get out of default, but still…). This could easily put a cramp in things, depending on the judge who hears the case.
I am anxious, I am stressed, I am worried, I am just almost at a loss. I have fought for so long to be able to legally care for my mother in the ways in which she needs care but refuses to allow me to care for her on my own, and in ways that a simple POA will not effect. And here I am, at risk of not being able to receive the legal help I need because of student loans and credit history and my disabilities due to mental illness (major depression, PTSD, extreme anxiety, etc.).
I just want to be able to take care of my mother and the law says, “you may not be competent.” Well, I’ve been competent enough for the last three years since my dad died to do so. And nothing has changed about that, except I am stronger and have learned so much about taking care of someone with her issues and illnesses. I don’t know what to do anymore.
I just want it to be over.
Hopefully within the next month I will FINALLY hear from a state appointed lawyer. Hopefully by the end of the year, I will be given my day in court with my mother to plead for the ability to care for her properly, make decisions she can’t, and make sure her bills are being paid (which they are not, at least not regularly, now).
If anyone reads this and has been in this situation or has any words of wisdom, I’d really appreciate reading them. I’m slowly coming to an end with my ability to see any positives about any of this, except keeping my mother alive…
…a very raw, and real one – one of the ones I almost always keep private…
April 5, 2017. 10:55AM
First of all, how is it that my writing today coincides exactly with the timing of my writing about volatility on March 28th, the last time I day-journaled? That’s weird…or not…but mostly, yes.
Today I feel ESPECIALLY volatile. In fact, I just texted that to a friend. The reasons are many. I haven’t had sleep in many hours (one hour, about, in the last 36 or so hours). Anxiety is the fault AND the cause of that, and of many things in and of itself. And all of those things are the cause of many other things. I mean, it’s like I told the fairy god-therapist recently: we can sit around analyzing that until we’re blue in the face and we’ve managed to work our way all the way back to our time in the womb, maybe even before that based on some belief systems, but it’s going to solve NOTHING about now. I hate that sort of cognitive psychology. Mind stripping bullshit… I hate it, but yet I love it and it’s a huge part of my personality – especially personality and understanding of self – to do just that.
Today, due to lack of sleep, due to anxiety, due to the chaos of thoughts that NEED to escape my mind and can’t escape fast enough, and then annoyingly get lost and ruin my train of thought all together and then I almost obsessively try to start all over (with that cognitive bullshit that I have a love/hate relationship with)…I just feel volatile. This flood of expressive thoughts that I can’t express fast enough, and all the noise around me – even the little noises like the birds chirping – make my head feel like it will explode.
They are like fingernails on a chalkboard, even the positive, happy sounds that we often invite into our environments. Everything makes my brain feel like it’s going to explode and all I want is perfect stillness and perfect quiet – kind of like the “perfect darkness” you achieve deep in caves, which is the only place on the planet you can ever achieve that. I don’t know where to go to achieve a literal perfect stillness and quiet in this physical world, and I certainly can’t escape to a cognitive version of it, even with meditation, with this “dis-ease” that seems to be swallowing my mind and consciousness.
I have been getting to know a new, light-warrior friend via Instagram through chat, and I was just expressing a similar (but not nearly as immediate frustration) in a conversation last night, during the peak of that episode of insomnia. I relayed how I have found myself simultaneously nodding my head and saying, “yes,” out loud as I’d read each thought they shared, whether in their posts or conversation on my posts or the human transactions that were being shared via DM, and how I was so grateful for that but it was also overwhelming.
Isn’t that so odd! To connect with someone who also wishes to spread love and positivity and happiness… Light…. And to be so blinded by that because of my condition. It both took me by surprise and made me sad. I was so happy – ecstatic, almost – to have felt such a deeper level connection with someone again and to have these conversations, but also sad and annoyed at my brain and chemicals and processes being as they are so that I also felt such an immediate and almost panicky need to express all of this I was feeling because I’d forgotten it all once before and I didn’t want to lose it again before I understood it, but mostly before I LEARNED from it.
A conversation ensued about the issue of “dis-ease” and I shared about how I will have down days, sad days, mad days, doubtful days, as part of my “dis-ease” as they call it (doctors and therapists and so on – the “helpers”). Even as a part of my grief. But the reality is that there can be kindness and love shared from THEIR realities (“normal, functioning” realities that they exist in, within themselves) versus MINE (the disturbed, lost, seeking, hurting, grieving, sick version of myself that I have become). They’re just so judgmental, in their perfect little boxes, conforming to a broad spectrum of socially acceptable norms that I don’t fit.
They don’t tell me or teach me positive things. They constantly teach me or relay to me, whether they mean to or not, that I am broken or in some way not good enough. I know I need HELP with my issues and conditions but I do not need to be FIXED. There’s a difference and that’s very frustrating and counter-productive for me. This new friend said to me, “what if you just looked at it as down days or feeling anxious, instead of labeling it a disease? Don’t listen to mainstream media, doctors or anyone that has no concepts of living outside of that box. You can help ease some of the anxiety and depression simply by not ever calling it a disease anymore. You just have more ups and downs and anxieties a little more often than others. Yet all the same – we are all sharing these same emotions. You’re not alone – just let them come and go. The words we say to ourselves mean everything – shaping reality thought by thought and word by word.”
It was really fascinating because it was like reading back my own expressions not so long ago – mostly, before heartbreak and death… I LOVE it. I totally get where they were coming from because I used to 100% be and live as that person with that mindset. And then, the “dis-ease” of it became a reality that suddenly touched, and then began to swallow me. It was almost like a suitor, wooing me – that’s how it always happens. It woos me and taunts me with certain aspects of it that are appealing to me (the melancholy, the muse of it, the creative expression that comes from it) and then once it begins it sucks me into this “toxic relationship” whereby I end up swallowed in darkness with NONE of those appealing qualities actually being a part of it. It’s a sneaky little bastard, that one.
And it IS disease. It IS illness. There is no escaping from or denying that, or there is no getting better at all. It’s a variance back and forth, for me personally, with the things I face mentally, between believing that our words can shape and even literally heal us and accepting that sometimes that’s just not the case. It’s like cancer – some people are healed and they claim that their believing was part of the recipe. But that doesn’t work for everyone.
When Dorie died I came to accept that even if everyone else believes along with you, with all they have, with all their being, sometimes it’s just not enough to overcome death. It’s similar with my mental health – it’s a hard balance to find when a) it’s hard to find meaning and purpose and believe in positivity and self-worth (depression, ptsd) and b) I’m working with therapists/doctors to try to get help for the medical aspect of it (replacing/balancing hormones and chemicals in the body, along with healing my physical body from the damages of chronic physical illness and rebalancing and at least stopping further damage, even though I can never really repair what’s already wrong – celiac disease).
Those people, as I just mentioned, may be trying to help you in a gentle way (as human beings doing the best they can) but the system is flawed because it’s always spoken about in such a negativistic way. What COULD you do? What SHOULD you do? How COULD you or SHOULD you change and what COULD you or SHOULD you change? All of this, when from the other side of their mouths (and the spiritualist parts of society and our selves), it’s all about how we’re all good enough, worthy, loved, made of love, perfectly designed, etc. Really? Because that’s not how it feels when you struggle with mental illness.
It’s because it IS a disease, down to a physical level. I can’t pretend it’s not or I end up missing out (due to escapism and avoidance) some of the good and even best ways I can be helped. But, at the same time, what that person shared does apply. The disbelieving and the labels and the basic bullshit of American medicine are not helpful factors and it IS important to try to steer clear of those things from a subjective place within ourselves. I love that suggestion and somewhere inside me I DO still believe and need to live more from that place. But mental illness is part of a two-sided coin of very real medical condition for me and it’s all so very hard to cope and to live with.
I try to remain in that positive space regardless and to not give up on myself or doubt when I step outside the positivity zone – I try to avoid definitions and labels of failure or success from that perspective, and I tried to address that in some writing I did about how just continuing to try is, in itself, success for ALL of us. That’s what I encourage others to do, and I know that I have to walk the talk as much as possible, mistakes though I might (WILL) make, and just continue to walk and grow. I feel like if I owe anything to anyone I owe THAT to my SELF, to my loved ones, and to the world. We all do. Just our best, and our love. You know?
He understood all this, even in all it’s chaotic and insomnia-influenced version of expression. He said, “Definitely – always breathe and be grateful for NOW…and YOUR continued journey. It’s not selfish to live and dance for the ones that no longer can… We are all here by ourselves, really, anyway. Love yourself, talk to yourself. Be your own best friend (again). It could a long one, friend!” And he is so right – that, what he described in those statements, that’s who I’ve always been. Even in my darkest times and struggles with depression and mental illness in my past, I was always able to hold on to that somewhere and now, with her death, it FEELS like that is gone. And I’m so terrified at every level because I literally feel as though I have lost myself.
I love his perspective and his confidence in life and in love – and so many of my other kindred spirits in that community. I can’t even wait to write more posts from the food for though he/they have gifted me. I can’t wait to continue these conversations together and with the world at large. But it’s also daunting, because I have very little faith in myself that I CAN do that. The darkness says, “there’s no light, tunnel or not, you are deluding yourself.” The me that desperately seeks to not become wholly lost forever strives to believe and convince myself that that itself is the delusion. How ridiculous this carousel is, and seems to remain…
In closing, for now, I thank you for reading, and for existing as a very important part of the tool set for me to at least attempt to express myself. I am so grateful for you. I wish you all the love and light that I want to believe is out there and within you and me – all the light, everywhere. May we all continue to seek it and to find it, and even if in the most unexpected of places and ways may we always allow it in.