Mirror Schmirror

This is not a post that’s written out of anger or fear or frustration. I feel very little of anything except exhaustion at this point. So, however you “read” it, please don’t take it negatively… It’s just today’s reality – in my mind and my life, anyway…

I’ve decided that this “lost” feeling I have so often is actually where I’m found. It’s the times I find myself feeling “normal” that I’m truly lost, because feeling good and happy is not my normal. I feel good and happy as often as and as disturbingly as most others feel sad and anxious. 

The twist in my story is that I don’t care who understands it and who doesn’t. That annoys people. But, the truth is that anyone’s opinion is not going to change a thing… It’s not going to change a thing about who I am or how I am or how I live my life. 

Speaking of living my life, there’s not a lot of living to it lately. I’m so tired of feeling like I’m dying. I’m so tired of being sick. I’m so tired of being controlled by what my body dictates. I’m really angry with it (my body). 

Louise Hay has tried to convince me that looking in the mirror 537 times a day and telling myself that my body loves me and that I love my body is going to change things. It has the power to heal me. Well. I have something to say to Louise Hay this evening: mirror schmirror. I know we all die eventually…but maybe I really I am on my way out the door. 

I can’t tell anymore if that’s my brain, my emotions or my body talking, but I currently feel like if that’s what’s happening then why not accept it and stop further exhausting myself by believing that my mirror can cure chronic illness? I know, I know. It’s not that simple. There’s more to it than that – most of which I am also doing, and that’s not feeling like it’s healing me either. Because that’s what CHRONIC ILLNESS means. It doesn’t get better. It doesn’t go away. IT DOESN’T HEAL. Hello.

I’m too afraid to go for any scans or any more tests. I’m just so…tired. So I’m just gonna be here doing what I do, how I do, until whatever is next happens. I have no control and I’m exhausted at every level from trying to maintain a version of control of my life and body that I never had. I’m not planning on laying down and dying, but if that’s what happens…then it was meant to be. 

I’ll be seeing you around, my friends… I’m wishing you a very good and enjoyable weekend. 

All the love,

C. 

Unafraid

Good morning. 👋 Welcome to this morning’s ramble, which has brought me to the deep, sudden and unexpected realization that in my “oversharing,” I’m not crazy or weird at all. I’ve let certain people almost covince me that I am at different times in my life, and there’s always been a sort of overshadowing insecurity in me about that, off and on. This morning I feel as though, well, I’m not crazy at all. I’m just unafraid to express myself (and pretty good at it, too)…

Last night, I ended up watching “The Monster Calls” with my son, who couldn’t sleep. You wouldn’t think a movie like that would help him sleep (spoiler alert, the mother dies of cancer), but after watching it and cuddling close and having a good cry together, he slept just fine.

I, on the other hand, have been awake most of the night and wondering what I did to deserve such an amazing kid to help me through my own troubles. This morning (as of 4:33, when I’m writing this), I still feel physically horrible (that hole in stomach, you know) and fairly anxious (because I wasn’t expecting the graphic cancer/death ptsd triggers in that movie), but I also feel so happy and grateful deep within. That boy. I just love him so…

After a brief nap I can’t sleep again, so I just keep alternating between watching him sleep and typing away on my laptop, banging out my frustrations and fears and pain into the same, now monotonous and annoying, adjectives and analogies. I suppose it stems from being so bored with what my eyes and my mind keep seeing that I decided to imagine my laptop as this classic Smith-Corona (thumbnail photo) instead of the 8-year-old MacBook that it is.

Oh, the memories… Even down to the color, it’s just like the Smith-Corona my mother wouldn’t let me touch as a child despite my desperation to caress and become one with it. I literally felt like it was a sin to touch that typewriter and that I’d go to hell if I did (thanks again for the ridiculous, guilt inducing religious undertones to EVERYTHING in life, Ma). I think that typewriter is what made me aware that I wanted to write in the first place, and that my oversharing now is some strange, delayed rebellion to that feeling from childhood.

Hashtag psychology, you know?

I was always obsessed with that typewriter. If a child can covet, that’s what I was feeling. Then, when I was 13, my mother sold the damned thing for $40 in an estate sale after my grandmother died. When I asked why, she explained that she just didn’t want it anymore. So why couldn’t I touch it if she didn’t really love it? And, since she knew how much I loved it, why couldn’t I have had it?

The ridiculous truth is, I’m still sad about that… Anyway, now if only I could get my insomnia/malnutrition induced delusion to include the clickety-clack and the ding…

Ramble over… Hope y’all have a lovely, inspired day out there in the world. Make it count. All the love to you. 

❤️😘✌️🙏🏼

C. 

Monday Motivation #1

Motivation Monday: something I’ve been working on lately is reminding myself not to get upset with those people who like to constantly remind me that, “it just takes time.”

I believe that most things take a lot more than just time. Fitness. Saving money. Spring cleaning. Healing childhood pains. Grief. There are many things which time alone does nothing for, unless we do something about them.

I used to get so frustrated with people when they’d say stupid things like, “time heals all wounds,” etc. Those comments only added to my frustration and pain. Some wounds can never be healed. Even with those that can be, time does nothing on its own. I’ve always considered that phrase a sort of cop out – but that’s just my perspective.

If the light in the thumbnail photo above stops working, we need to either change the bulb, check that it’s plugged in, or pay our power bill. We need to troubleshoot and solve the problem to find the reason it doesn’t give any light.

We need to both take responsibility and give ourselves some credit for what WE DO during that expanse of time between broken spirited, broken hearted, in a depression, struggling with CPTSD and chronic illness – whatever YOUR hurt is – and the moment that we feel some relief or healing or comfort again. It’s not down to time alone that helps you to be better. It’s down to what you DO with that time.

Today I encourage you to do something useful with your time that helps you to either solve your problem or to heal.

For me, it’s openly sharing and connecting with you all. It’s taking photos, or at the very least editing RF ones. It’s keeping myself  in my creative space. It’s actively surrounding myself with people who lift me up rather than put me down. It’s reading, researching, and keeping myself up to date/educated about my chronic illness, and putting massive amounts of effort into learning about/putting into practice the lifestyle I must live now with Celiac.

And? It’s allowing my rages, breakdowns and bad days with gratitude that I can feel at all, rather than be numb, and that I have the gift of expressing myself.

I forget my part in it sometimes and my light goes out again, so…well, in short, all this sums up to, “I have to keep changing bulbs & paying power bills.”

YOU can overcome ANYTHING. Give yourself a chance. Take your time. Be gentle. Go slow. Find your pace and go with it. Find your tools and use them. Realize what your needs and goals are. But never forget, you gotta show up to reach them. You have to meet yourself halfway. Please give yourself the gift of realizing that you’re valid, you’re worthy, and you can create a better tomorrow because of, even in spite of, today.

Much love, friends, and a happy Monday to all…

C.

Supposed to…?

I was supposed to be having the time of my life.

Much to my surprise at the disdain many feel for Sylvia Plath, she gets it all so right in “The Bell Jar.” There is a strong resonance there for me, from the exploration of self to the sheer willpower to survive an experience…only to, as Plath herself did, give up in the end. I struggle and I strive not to reach an end like that. Some days and even for long periods of time, as I mentioned in my last post, that is extremely difficult to sort out and to sort through and to achieve.

I have struggled lately to write openly because my goal is to shelter the world from more negativity than it is already swallowed in. The struggle, the pain, the complication, the general melancholy… But it seems to me, after some of your comments here and some of the conversations that have taken place in my Instagram DM over the last week, that there is no sharing the overcoming and the victory without sharing the struggle. What good, after all, is a victory if no one knows what was overcome?

For the record, for those who are new readers or who are uncertain what the struggle is here, I am striving to overcome my emotional battles, learn to live with (or despite) my grief, and gain some sort of normalcy in a life plagued with chronic illness and pain. All of these things could easily remain invisible. They remain invisible to some despite how openly I express them in my day to day life. My biggest purpose in working through my struggle to share is two-fold. The first is to somehow be a part of ending the stigma of invisible illnesses, both physical and mental. The second is summed up in one word: community.

I’ve been having a conversation with my new friend bumblebeechula (from The Musings of a Young Lady Girl) about living in a place of constant undermining and doubt from those people who we go to for help – in this case, doctors – and how constantly coming up with a non-diagnosis is so defeating. It adds another, more emotional/mental element to the battle of living with chronic illness. Then, we attempt to share our experiences and unless we can find some (almost impossible, unachievable) super shiny, positive way to express them those around us begin to view us a pessimistic, self-absorbed, even self-loathing… That’s not the truth at all – it’s just extremely difficult to cope with an invisible illness, and it’s nearly impossible to express it in ANY words in a way that someone who has never experienced it or struggled with it can possibly understand.

Just a quick example here: yesterday at my session, I was explaining to Ginny (my doctor, for all intents and purposes, even though there is no help for this disease aside from diet) that I was really beginning to struggle desperately with anxiety and depression because of my Celiac diagnosis.  My husband, who was with me, quickly belittled my expression and my concern, and literally said the words, “she says that but all I can see is her doing better all around.” Exactly. That’s what HE can see. Because all of these issues – celiac, depression, anxiety – they’re all invisible to anyone who isn’t walking in my shoes. People can look at me and see the most put together, healthy, wonderful woman if they only see the cover. And that’s what they do, even when I try to open the book for them and give them a peek inside.

I hear everything from how I’m too young to be dealing with peri-menopause (even though it’s been scientifically proven that I am via my bi-weekly blood work and other testing), to how it’s ridiculous that I’d be complaining of issues with hip pain and pain in my hands (due to also medically diagnosed arthritis), to how gluten sensitive and celiac is just a total crock of sh*t, to how mental illnesses like anxiety and depression are just excuses not to do things and/or to avoid my true problem which is grief – which, by the way, is apparently something that is only a problem because I refuse to let go. What I personally find ridiculous is how, even if I pull out the paperwork and show people (hi, Mom) the reality of what my body is going through, it is quickly reduced to being all in my head, every single time.

I lost my mind over on Instagram earlier this week because the above experiences were finally culminated with some DM’s regarding my sharing of Sylvia Plath quotes. The one that really “broke the camel’s back,” as it were, was the one from a complete stranger, an eastern Indian person studying to become a doctor of some sort, who politely encouraged me by saying, “please stop feeling sorry for yourself and don’t put your head in an oven,” a play on how Sylvia Plath committed suicide. It just pushed me right over the edge – and the ensuing public conversation was about how, YES, I became defensive; I did not, however, become defensive of myself – it was for all the people struggling with invisible illness and how much harder their daily battles can become because of off handed comments like that. In reality, none of what I posted had a thing to do with feeling sorry for myself. It had to do with those quotes being exactly the reality of my life at this time.

It is beyond the truth: statistically, any 38 year old woman should be having the time of her life, whatever that means for her. Whether it’s reaching highs in her career, or being a single woman with resources who wants to travel the world, or being a homemaker and a mother, whatever she wants to do with her life, by 38 all the women I know are busy achieving their goals. The majority of them are having the time of their lives and living like crazy. Me? Not so much. I’m NOT having the time of my life. I’m busy struggling with chronic illness, the loss of both my mother and my father, the hopeful rebuilding of my marriage and my life, and the depression that is developing regarding all of those things…

I’ve been diligently working through “You Can Heal Your Life,” Louise Hay’s one-stop-shop for how to change your world and create a healthy, happy you, all by simply proclaiming it to be so, and I find myself becoming more and more disgusted with her methods and her ideas. It’s hard because no matter how many times a day I look in the mirror and proclaim to myself, “I am healthy. My body loves me and works just as it should,” it does NOT negate the fact that my body is not built normally on the inside and it will NEVER work just as it should. That’s just factual information – not doubt, not negative self talk…

My body is broken compared to a “normal” or “healthy” body and the thing that is broken about my body can only be managed for the rest of my life – it can never be “fixed” or “healed.” It’s so annoying…because I swear on my father’s grave that is not a negative statement or something that comes from a deep pit of negativity inside me. It’s just…reality. Some realities are not positive and happy. And therein lies my challenge of expressing it all without being read as Negative Nancy – because that’s the last thing I want to bring to the world…

As I mentioned, I’ve been conversing with bumblebeechakula about this and one of my most inclusive replies was, “Thank you for the encouragement to continue posting. I’ve been battling with that for a little while now, which is almost hilarious as I only started this blog this year. Sigh… It’s true what they say – it takes a village. Not just to raise a child, as the saying was initially about, but for so many things. Coping with chronic illness is one. I’m happy you’re part of my village, and grateful to be welcomed into yours.” This was in response to the most wonderful, perfect statement in her comment about dealing with chronic illness. “I think it’s so important to share our stories with other people.”

It IS important. And it is important for them to see ALL of it. Chronic illness, whether physical or mental, is hardly ever an easy experience. It is most often riddled with confusion, frustration, pain, and getting knocked down more times than you feel like you’ll ever have the strength to get back up from. Most of us DO get back up – over and over and over again, sometimes multiple times a day. But it’s not without struggle and it’s not without some expression of the pain, whether it’s a wince or a grunt or a moan, or a random, monthly rant to a friend or on our blogs or social media about that frustration and struggle. Those “once in a while” expressions of the reality of the struggle are not cause to label a person as weak, or negative, or a complainer, or self-pitying, or selfish. It’s cause to label them as a person who is struggling through some extremely difficult thing and COPING.

I think it is important to change the perception of chronic illness, as I’ve just described. I think it’s important to show all sides of it, and then, when we do have victories, no matter how big or small, they serve a far greater purpose in encouraging and helping someone else. Nobody who ever had it all from the get go ever made an impact in this world. Every single person who has made an impact in this world has had their own, personal, fair share of struggle – whether financially, physically, mentally, socially, etc., anyone who has changed anything in this world has not done so without overcoming SOMETHING on their way to making an impact, and that, my friends, is something to be commended.

In closing this post, I want to share a sort of a story with you. It’s a story about this image (below) and where it took me.

I stared at this photo for quite a long time. It really resonates with me, much like the Sylvia Plath quote I shared above. It forces me to consider how this is a very good representation of what life often feels like when you have an invisible illness or disease; when you struggle with chronic physical or mental illness that you can’t prove to anybody.

After some of the responses to my DM’s after my Sylvia Plath posts, I had a friend – a good friend – reach out to me and say, “you know you don’t have to defend yourself or your choices. You’re under no obligation to defend anything to anyone.” That is SO true, but I think what I realize from this comment and from thinking about what she said is that it’s not defense of myself that is my concern.

I do not defend my choices of posts. Rather, I defend the general issue – the open expression of the struggle people face when they are battling depression. Especially in conjunction with chronic illness, it’s something people tend to not be able to wrap their heads around. It’s a struggle they can’t grasp, and because of that they often falsely judge others and they publicly add to the stigma of both mental and physical chronic illness.

That’s where the root of my defensiveness lives. I don’t think I’ll ever reach a point where I don’t feel obligated to defend the world of the chronically physically and mentally ill against stigma. I’m upset at the population in general from that standpoint. I wish I could educate in a “better” and more tangible way, but for now all I have are my own experiences and thoughts. I have quotes, and my photography and writing. Those are my only tools, and the things that I’m good at. Those are the ways that I’m comfortable and best equipped to be an example. Whatever your way is, please USE IT. Please keep expressing.

My experience this week personifies the struggle of judgment, undermining, and insult that people face when they live in a world of chronic invisible illness. So many give up trying to express themselves because of this. Don’t give up. I don’t want anyone to give up. Ever. Especially not on themselves. THIS is what I want to change in the world. THIS is my goal. I want to help people to understand, and to BE understood. It is equally important, from both ends of the spectrum.

 

Collateral Beauty

Collateral Beauty.

Sigh.

I finally watched it this weekend, and it was… Well, to put it mildly, it was hard. I’m not exactly sure how to express what it was for me, but I feel this need to sort what was for me for myself. I need to understand what happened to me not only as I watched this film, but more importantly what happened inside of me after I watched it.

It was raw emotion. A slimy nose and a wet face. Nearly a whole box of Kleenex. It was bloody and bruised heart-pain. Deep scars gashed open. Barely healed rips ripped yet again. Elephant on chest. It was the darkest places and emotions in my soul. Fear. Rejection. Doubt. Loss. Grief. Anger. Exquisite sadness. It was every horrible, painful, heart-wrenching emotion I’ve experienced in the last three years, all at once.

It was also every good thing. Every fantasy, every hope, every dream, every wish. The lightest, most beautiful places and emotions in my soul. The heart filled with love exploding in my chest, the tears of joy, the racing thoughts of all the beauty and good that I ran so fast and chased so hard trying to keep up with before it disintegrated into a lonely fog of misty memories…

It was every dialogue between Howard and the projections of our three most relatable experiences as human beings…every single one and from all sides has been me at some point in the last three years. Despite the hard things it brought up in me, it also brought to the surface my truest reality and recollection of these years: that they were absolutely the worst years and the best years of my life all at once, and I wouldn’t change one single damned thing.

Perhaps they were my best worst years, or my worst best years… I don’t know. Overthinking aside, they were definitely the worst and the best all at once. I experienced more emotion, more pure and raw and true love being felt and expressed from deep within me, more conscious realizations of the truth of time, more acceptance and patience with death, than I have ever experienced in my life – or will likely ever experience again in this way. It’s funny how the most beautiful things in our lives can be the most terrifying. The most precious things about ourselves, we don’t see the same way others do because no-one ever tells us…and then, when we do see it, we feel like it’s too late and all for nought.

Nonetheless, observing myself and seeing myself on the roller coaster from the ground, so to speak, I realize that it was not all for nought. What would have amounted to zero was not being there at all…

During these years I have stepped out of my comfort zone in so many ways. I have done things I had never done and never imagined doing. I have experienced things that I have only ever dreamed of. In the process, I have made some mistakes that were, and continue to be, the most painful for other people that I have ever made. But I have learned, and I have forgiven others and sought forgiveness. Whether I have received it or not is not up to me…the most I can do is to offer mine and to forgive myself.

I have opened my heart to give and receive love without giving in to fear or doubt, and at the same time closed my heart to love for precisely those reasons. I have had the most beautiful, soul-awakening, life altering experiences of my life in these short 36 months, and I have turned away nearly as many in these last 12.

The short of it is, I have lived.

I wish that I could say that the following statements were figments of my imagination but they’re not. In the last year, it is the fact that I have lived that is my burden. I’ve heard it called everything from “just grief” to survival guilt. I think it’s a bit of both. And, admittedly, it’s a bit silly at a number of levels. Considering I have a young son to raise and who loves me, and that my only fear is dying and leaving him without a mother, it’s especially ridiculous to feel guilty that I’m alive at times. But, I do.

The mind doesn’t have much of a say in these thoughts, really. The heart can’t be tamed – not one like mine, I’ve been told. And mine is still all over the place. CPTSD aside, I’m not mentally ill. I’ve ALWAYS been a very sensitive and emotional person. I’ve also always been looked down on for that. That doesn’t bother me. What bothers me is that I have spent the last year – grief, heartbreak, rejection, whatever negativity aside – wasting the life I have left… That’s the main thing that I took away from the movie.

The thing is, BECAUSE of the CPTSD and the anxiety – which are, technically, mental illnesses – I can’t rightly blame myself or be harsh with myself. It’s NOT something I can help, or just change. It doesn’t work that way. As I pondered this I found myself having a mind fight with Louise Hay and her spiritual/psychobabble bullshit. My state of mind is not something that is so easily healed by simply talking myself out of the bad and into the good with affirmations and hopeful daydreams. Or maybe it is… I’ve no desire to drop a house on anyone else’s experiences. But for me, it feels more like delusional and irrational thinking than what I’ve already been accused of with my fear and pain.

Oh, it’s all so ridiculous, isn’t it!? The whole of life, and humanity, and the way we humans think and feel and act and live… The scenarios we find ourselves in very rarely ever make sense, even with the spiritual/psychobabble bullshit in the mix. NOTHING makes sense. I don’t think it was ever meant to… We think it does, we talk ourselves into believing that it does and that this fits with this and that fits with that…but it’s just a big, disillusioned blend of cause and effect, chain reactions, and a little bit of mystical enchantment here and there – signs and so forth. Do we talk ourselves into believing things or is what we see actually the way things are? I don’t know. I don’t know at all. I never have known, although I’ve tried to make myself believe I have in order to “remain sane.” That’s when they really began to call me crazy.

Ultimately, I don’t think it’s crazy. I don’t think any of us are crazy. I don’t think religion or dogma or spirituality or science or any of it is crazy. I don’t necessarily think it makes any sense, either. And, I don’t have any idea what I believe or what I want to believe anymore. But what I do know is that if people are happy believing whatever they believe, let them believe it, because to be where I have been and where I remain, either being told not to believe in a fantasy or being told that what I do believe is ridiculous or being told that there’s nothing at all to believe in… It’s the worst place a person can ever be to believe in nothing at all and not to care…

I suppose that’s why this movie had the effect on me that it did – because I DO want to care. I don’t necessarily want to believe, or want to be told what to believe, or to search for what I believe…but I do want to feel, and to care. And that’s what is missing from this life-long feeler and lover and wonderer of life and all that’s in it. The only time I feel any of that anymore, really, is when I look into my son’s eyes, or when he holds my hand or hugs me, or cuddles under the covers with me watching movies at night… I am beginning to feel it a bit more out in nature again, which probably has a lot to do with the changing of the seasons and a new spark inside that always comes along for me as winter turns to spring…

I find myself at a loss for anymore words at this point this evening…except to say that these are definitely things that I want to continue observing and considering. All I know for sure is that I want to keep going, even if it’s just to prove to myself that I can do it.