Tag: fear

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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.

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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.

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It’s easy for people who don’t have major depression or a chemical depressive disorder to look objectively at a person’s life and point out all of the logical reasons why someone should not feel sad, angry, anxious, or any number of other emotions and emotional experiences that come with depression. But depression isn’t logical. Depression doesn’t care to reason, and certainly not to show mercy.

You can’t talk your way out of it, pray your way out of it, think your way out of it, spiritualize your way out of it… You can’t analyze, theorize, medicate, or meditate your way out of major depressive disorder. You can’t shop, travel, read, or even act your way out of it.

For those people reading this who are in my shoes, you get it. For those in my life who can’t grasp it, I’m sorry. I know that you can’t get it. I’m sorry that I’m sick. I’m sorry that I am not who you want me to be or who I want to be to/for you. For those reading this who don’t get it at all, I hope this helps your mindset.

Please try to remember that it’s a disorder, not a decision. You can’t fake your way through depression every day. You get tired. And when you get tired, and feeling especially tied up in the straightjacket of depression, you really don’t care who sees or doesn’t understand.

Then, you regret that, because they think it’s them. They try to make it about something it’s not, because you should know if you pray or get spiritual or meditate or walk outside or even “JUST TALK” TO THEM!! then you will suddenly be ok! Then, you REALLY hate being here. You REALLY feel misunderstood and unloved. You REALLY want a drink and you REALLY don’t wanna take your meds – because you just want to sleep.

You want to sleep forever. You can’t move. You don’t shower. You don’t even brush your teeth. All you manage to do is go ahead and swallow the pills and go ahead and feed your kid and fake your way through homeschool. So…

The cycle continues. Until one day you say, “f*** the cycle. F*** it. F*** other people. F*** how it looks. AGAIN. I’m going to just make it stop.

And then you don’t. AGAIN. Because of him, in my case. My son. Because you’re too filled with love. That’s right – people with depression still love. They still feel “positive” things. And most often, when they commit suicide, they do so because they love others and they truly believe that the world and their people are better off without them. I know that’s hard to understand. But, it’s the truth.

Why? Why do they think the world would be better off without them? Not because of depression itself. Because they’ve had to fight their depression alone, which is impossible. They believe they are a burden. They feel their depression is causing too many issues for other people.

They feel…. Unloved. Ignored. Unseen. Without worth to add anything good to the world. They don’t want to make the world a darker place because they love. But when they end their lives, and usually while they are still alive and it’s often what pushes them to the end, along with the depression itself, they are labeled with things like selfishness, negativity, cynicism, laziness, etc.

None of those things are true.

You can’t do it alone, and anyone who says they did or do or that you can is a liar. Even if it was influences from media that helped them (music, movies, speakers, writers. etc.), nobody survives depression alone – especially not the kind that wraps itself around you like a second skin and doesn’t let go, and can’t be peeled off, and hurts even to try to put clothes on and cover it for the day.

And that’s the only reason I’m still here.

#welcometomyweek

I haven’t shared any of my music for a while, but, whelp, here’s a thing. Enjoy. All I can do right now is express the music (and the image edits) and that’s what this is. I may not have the words but I have the music. So far, I’ve always had the music.

The basis of this song is to end stigmas, to understand that those with mental illnesses need compassion and they need to be reached out to, not ignored or shunned or pushed away or further labeled, and saying goodbye to those labels.

There is some sort of problem with the video playing on mobile devices so if the video doesn’t work for you, you can listen to the song on SoundCloud as well as download it for free, for listening later.

I hope that YOU are doing well, and I hope that you get something out of this post that helps you better deal with or understand anyone in your life who struggles with depression.

All the love,

C. ❤️

**This song was mixed with Auxy using samples from Fanton ’87’s “Pay Phone.”

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Partially rewritten from an old instagram account – the one that used to bear this username, I wanted to take a moment to catch up with you and tell you, in short, I’m doing a 5k in two weeks. 

I know, I know. What!?? My husband has been helping me prepare and is doing it with me, along with our little pup. It’s been a definite lesson in learning to listen to my body. Yesterday I made my best time, averaging just at 15 minutes per mile, which is basically shit for a runner but a miracle for someone pushing through with chronic pain. 

I suffered last night. Today I can hardly move. But this evening, weather permitting, we’ll be out again, pushing that time. Why? Because I WANT to. Neighbors and acquaintances alike are openly calling me crazy and expressing concern for my sanity more than my safety but using my safety as the key words, and I want to combine two things (this older writing rewritten for the now and a piece I wrote last night) and share it with you. Why? Because it helps me to share. 

Walk A Mile in My Shoes

I wrote this a while ago but was afraid to share it because I didn’t want to be seen as a complainer or as weak. This is what the stigma of invisible disease does to people. My friend sent me a challenge to share my truth as I used to – it’s called the #vulnerabilitychallenge. So, I AM going to post this & not be insecure, & know I am not complaining. 

If you have loved ones with CI or chronic pain, be patient with them. They can’t control their bodies & battle with them every day & some days every second. It’s hard to live with pain, especially invisible pain. Try to give them a break. 

Literally hours ago I felt like this black cloud over my head was lifting. I felt…happy. I got excited because the depression was leaving. But what I forgot is that it never leaves. It just rises & falls like the temperature…or the ventilator that kept my dad alive during his coma.

I realized I keep waiting – waiting to get better when I know I never will. I may not necessarily get worse, but never better. That’s what CI means. So I do the best I can…but forgive me when I suddenly crash, or snap at you, or act out of sorts or distant. It’s not just a mood. It’s not just pettiness or whining. Its not selfishness or taking you for granted. It’s fibrolife or a celiac flare. Don’t be angry with me & fuss at me or cuss at me or take it personally. Worse yet, don’t compare me to yourself or others – especially others with CI or depression. 

Instead, just take a moment to try to imagine your skin feeling like it’s on fire. Feeling like your legs are wrapped in barbed wire, and let down because it’s backpain again tonight, first headache in a while, leg cramps, stomach cramps, everything hurts, and it’s stress. My body reacts very bitchily to stress – especially extreme stress, like my preparations for this 5K. 

The day has settled down & now it all catches up with me. Don’t hold it against me if I don’t cope well with stress. But rest assured – I WILL walk on, I WILL keep pushing through, and I DO love you. But I am also upset with certain aspects of how I’ve been approached recently. 

It’s comparison that gets to me. Tonight I was reminded by a film I watched during this painsomnia marathon how my mother has always doubted me and how sensitive I am to rejection, being doubted, being abandoned as the weak or the crazy one…and how that has been feeding my insecurity lately from several different directions. This all in turn reminded me that I am plenty “enough,” and never “not enough” or “too much,” at least not for MYSELF, which is what matters, and I started thinking about how even though I know it will never happen, anyone who doubts me needs to stop judging and assuming and just sit back and watch me succeed despite the challenges I face or my ups and downs. 

Then I wrote this note (blog) that was amazingly well thought out and put together and accidentally deleted it because it posted twice but it was a glitch so when I deleted one it deleted the actual note (and yes I’m pissed). Sigh…

The whole idea was that I no longer believe that our thoughts alone create our experiences, or that life has “terms.” I believe that there is a reaction for every action and that regardless of our thoughts or best intentions sometimes bad shit happens. I don’t believe we can control our lives with our minds alone, and that our hearts and our spirits have just as much to do with it. I believe that our actions and reactions, good and bad, feed on themselves to create our lives, and I also believe (know) that our lives can be effected by the actions and reactions of others but that we ALWAYS have a choice in how we live and face our challenges. 

I don’t believe in living life on life’s terms, I believe in creating my own regardless of what life has to say about it, even if that’s the harder way of dealing with things sometimes, and I’m sick of hearing people tell me lately that I need to accept life’s terms, I need to be careful with my body or I’ll make it worse, I need to just accept that I’m older or that I’m sick and so I can’t do the things I used to. Pffft. I know that they THINK that they have my best interest in mind, but they’re not ME. How can they know what is best for me – especially when they’re only a neighbor or an acquaintance I ran into in the dollar store? They can’t – not even just because they had an experience and found out what was best for them. 

Look… Listen to me hard right now. How many people who get a cancer disganosis say, “ok, I’m terminal. I’ll just die now and not try to fight back?” Some may, I’m sure…but all the people I’ve ever known to get that diagnosis, in real life or friends/acquaintances online? They may already know they’re terminal and they’ll die but they still fight – 99.9% of people I know who have had that diagnosis have not just accepted it as “life on life’s terms.” I even asked Dorie one time, because I used to judge that choice and think, “if I end up like that I’d never choose chemo,” why she made that choice and continued to struggle with it even though it was that that was killing her and not the cancer… Her response? “It’s the only way I know how to fight this.” 

My experience with Dorie and cancer and caregiving and watching her fight…that was the moment that I stopped believing in life’s terms and started believing in the human spirit and in the human heart rather than some stupid idea about how life works the same for all of us. IT DOESN’T. In a general sense, we all live and die. Everything in between? Not exactly the same for any two people. That was a huge lesson and realization for me. I’ve always known we are all different and we all do things differently and for different reasons. But that was my first slap in the face of how stupid it is to compare people or hold them to a standard we might think we have for ourselves but that can change in an instant based on any number of scenarios we may face. 

Fighting my body but learning to listen to it at the same time has reminded me of that. Especially today, after reaching that milestone in my mile time. My hip and my knee – my whole right side from the ribs down, really, is screaming at me. But it’ll pass – and it would have screamed anyway, probably louder, if I hadn’t reached this point. It would all come in waves regardless of any choice I did or didn’t make – because hello…that’s how it works.

Anyway, all of this reminded me about comparison. That was the whole premise of this whole bit of word vomit to begin with. Don’t compare – don’t compare ANYONE but especially not people with mental or chronic or physical illnesses in general. It’s not fair, because we ALL do things and face things and accept things differently and at different times and in different ways and even on differently on different days.  

I get that people may think I’m super crazy or annoying because I deal with life at both ends of the spectrum to an extreme and refuse to just exist or live somewhere in the middle but that’s because I don’t WANT to be or live a mediocre life. And, it’s also because I’ve always been a passionate and very free spirited person and I’ve always had to fight – it’s a learned behavior. I’ve always had to fight – those are hard words for me to “say” out loud, but it’s true and a realization that deeper discussion in therapy has helped me to accept.

I’ve ALWAYS HAD TO FIGHT and it is a LEARNED BEHAVIOR – my mother, my health (yes even as a child – mostly because of allergies and reactions which we now know was related to celiac but especially the time I had chicken pox and then scarlet fever and almost died when I was 7, which is what led to my heart issues as an adult), my depression, and a whole hell of a lot of people in my life as a young person (family, not people just randomly existing in my life, but yes, some of those…) who never accepted me because I was adopted and who always judged and hated me and belittled me because I was different…I was bullied a lot in school when people found out I was adopted – and I still have no idea exactly how that happened; because of how my “family” treated me I NEVER talked about being adopted to anyone. I guess there’s always that “one friend” in middle school… LOL I digress…

Rest assured – I may appear weak at times, especially when depression has me down – depression is the hardest and cruelest battle I face and yes, I face it head on daily and “fail” miserably sometimes in the eyes of others and even myself when I forget that surviving another day is a huge achievement some days, but weak is the farthest thing from reality that I am or that ANYONE with depression is. It’s the farthest thing ANYONE with ANY disease is, physical or mental. So just because someone doesn’t complain or express thoughts about their illness to you and you think, “ohhhh they’ve got their shit together, why don’t I or why doesn’t she or why doesn’t he?” Just don’t. Because they DON’T have their shit together. They’re just dealing with it in a way that makes it look like they do – and if they’re not talking to you about their struggles it’s easy to think they’re not struggling. 

News flash – not everyone talks about their struggles. Some people are very private. Some only express their physical and emotional exhaustion when they’re alone in the shower or in bed at night crying themselves to sleep. Some express it with a scream into a pillow that no one ever hears. Some express it by not expressing it. Silence is a sound, too… I’m not one of those people that is very private, and that doesn’t make me a bad person or a weak person or an ungrateful person or a “not coping well” person… And tonight I’ve been reminded by art imitating life imitating art of how much I HATE to be compared to anyone else and how much I strive not to compare anyone else to myself or to others. 

I don’t want to hear about what you approve of or disapprove of how I have a goal to make it through this 5k coming up with a “broken body,” or about what I should do or what I can’t do or what precautions I should take and so on and so forth. I CAN READ and I have been researching my physical conditions a lot longer than you’ve been thinking about all the ways my legs might not work during a 3.3 mile trail run. Speaking of which, it’s ONLY 3.3 MILES. It’s not the fucking Iron Man. 

What I want is for you, if you’re one of those people, to just sit back and watch what I CAN do, despite my insecurity and fear and pain and my body that screams, “fuck you!” to me every time I begin and end a walk or a jog. I want you to sit back and choke on those words of doubt and judgments, even if you’re only thinking them. Because I will NEVER say them to myself and I don’t want to hear them from anyone else, and I don’t want to be compared to anyone else – especially not anyone else’s imaginary standards for me (which are generally double standards, anyway). Nobody does. 

Tonight I’m laying here with heat on one spot and ice on another, and you know what? I’m relishing in it – I feel strong. I think I’m stronger than the doubters and judges in my life because guess what? I’m doing something besides worrying about what everyone else’s is doing. I’m focused on MY goal and MY current “dream.” And I’m gonna get a T-shirt for this particular experience, whether I come in first or 80th or dead ass last. But what I’m really gaining is a window back into myself. And that is priceless to me, even if it costs me more than I have to pay in the end. 

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I have written many of these posts over the last three years. Especially after her death, I haven’t shared them publicly. In fact, after her death I took most of the ones written when she was alive down… But today, I just feel compelled to share one. I feel compelled to share more of me. Again. 

This is my best friend and one of the soulmates in my existence. I took this photo on the day of the diagnosis, after a long ‘ol conversation and a lot of tears. It was not the first time that sitting on this front porch was heavy and difficult, not even the day it was heaviest and hardest (for me, that would be the day she died, and I was on this porch watching in disbelief and denial as they took her away). It was also not the first time smiles prevailed over hardship there… They always did. But, definitely this was the day that the truest miracle of friendship happened between us – the day we made the hardest promises, and kept them. 

I miss having this in my life – not just her but what we were. I can’t say I wish to have this in my life again – I don’t believe it exists for any of us more than once, if we have it once at all; it would almost feel selfish to ask for it, anyway. But to look back and to be so grateful to have had it once, for half my life, makes me so very aware – joyfully so – of the miracle I had in my life in these people, and still have to some extent because some things just can’t be destroyed by death. 

I don’t know why I’m so randomly missing them today – because that’s the way grief works, I suppose. But today, I do miss them – especially her – from somewhere deep inside my soul. Not just missing a moment or a memory but missing what felt…feels…like such an essential essence to my being. All I know to do is recycle it into whatever it is I can give to the world…

I miss my Dad, my dog, my family and my friends and my life being what it used to be. I want it back. I can’t have that, necessarily… Some things can be mended, some things can’t…either way, it’s never the same. But I feel this today without tears or doubts. I feel this today with nostalgia and gratitude, with a sense of reverence for what it was, and look to it to find the tools to build whatever is next. I feel like that’s such a powerful gift. I don’t want to waste it; I want to live on…and I am. 

This was the time she had a rainbow on her shoulder and it reminded me of Mardi Gras. This one seems fitting for today, being Fat Tuesday and all. I said to her, “when you get better we should go together,” and she said, “yes! And I’m taking my grandson to Utah, too!” Perhaps it’s silly to make plans when you’re not sure whether you’re gonna be there for them…but are we really ever sure? No. We’re really not. 

We plan our lives when we’re well. Then we (Ok, I) get into panic, depression and sickness and feel like our lives are over. We start to think things like, “the best years are behind me, I’m past my prime, I’m too old, I’m too sick, I’m too afraid,” when in reality – and I know this from experience lately – it’s all bullshit! None of it is valid or true. But we use those things as excuses not to live, because the reality within us is that we don’t feel like we deserve to. 

There are many days that I don’t feel like I deserve goodness, love, patience, etc. I’ve done some terrible things to some people in my life while at the same time thought I was doing wonderful things for other people in my life. Sometimes stories don’t align and sometimes relationships fall apart; sometimes while we are doing what we feel in our hearts is right for someone else we are inadvertently hurting another. We do these things because we are human, not because we are horrible people. 

I truly and deeply believe that we are all doing the best we can with what we have and what we believe in any given moment. We make mistakes, we screw things up, we lose people, we inadvertently “break” ourselves. But we forget that we can make ourselves whole again – and we are the ONLY ones who can do that for ourselves. Then, sometimes we realize and accept it but don’t have the strength or courage to do the work. Maybe we just don’t know where to begin. I haven’t, since she died. The lack of her light in my world has left it a very dark place, indeed – but only because I’ve put my own light out with my tears. Death is so final…

I’m doing my best, every day. There are some I wish I could make amends with. I think of them every day but I can’t contact them. That’s one of my inner battles. I just have to – try to – honor them with the way I live my life now, and hope that they know the love is still there, that the love never left. And that’s what I’m trying to do. 

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Start where you are. Use what you have. Do what you can. -Arthur Ashe 

That’s all I can do, at this point. 

Today I walked my mom to her mailbox with my grandmother’s walking cane. It was iffy. I was terrified. It was very strange to feel the same “fear” for her safety as I often feel for my son’s when I’m the “responsible adult in the room.” It’s very disorienting to have such a very clear role reversal. It’s been semi- like this for a while now, but at this point we have crossed that line very definitely. It’s no longer a sort of blurry line or a dotted line. It’s a very solid line and we have very realistically crossed it. 

Tomorrow I have a meeting with the home health nurse about getting PT out a couple of times a week and having a social worker assigned to the case to help me to make sure I have access to all the resources I need. My mother is gone. As tumultuous as our relationship has always been, I’m still really sad inside, which was unexpected. I don’t know who this woman is. Neither does she. 

I saw a side to my mom when my dad died that I’d never seen – I saw an independent, capable woman emerge, brave and strong and extremely adept. Within months I saw that woman begin to fade away. In the last year I have witnessed (and fought against) the slow decline that has led to this sudden, extreme decline we have been facing over the last month. And the only thing I can say with truth and with compassion is that for her sake, not my own, I hope that dementia is a swift journey for her, like cancer was for Dorie. Because even when you have very little of a good past with a person, this is a very difficult thing to witness. 

It is hard with Granny Dot. With my mom…it’s beyond that. Maybe it’s because it’s not just compassion, but the nitty gritty caregiving I am responsible for with her. I don’t know. I never really liked my mother (because she wasn’t and never has been “my mother,” though I suppose I’ve always loved her, if that makes sense) until now – and it’s because now I’m seeing the mother I always hoped she would become…and I’m seeing that mother, in me… 

C.