What Training for the Bigfoot 5K Has Given Me: ME

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. 

Just Me | Long Time, No Post

I was challenged on Facebook to share “just me” in images and not just words. I suppose that’s a REAL challenge for me because I really despise sharing photos of myself, as most of you know. I’d much rather share the intimate details in words than to let you see my physical self. Who knows why – that’s so backward, right? I mean…that’s true nakedness.

Anyway, I didn’t copy and paste what the full challenge is but I did write my own thing because that’s kind of the space I’m in right now. The point of this challenge is to share just you, and lift yourself up, and by doing so encourage others to do the same. So…

This is just me. No filters, no makeup, sweating from hiking, in my element in nature. 

This is just me. No pretentions or expectations, a bit of a grimace coming through my attempt to smile because of the pain I was feeling in my body. 

This is just me. Christy. Leigh. Whoever I am by name, wherever I came from. 

This is just me. The nearly 39 year old mom of one who is struggling through grief, and who has so many diagnosed mental and physical illnesses I won’t even bore you by listing them again. 

This is just me. A woman you may not know anymore because I’ve changed so much or may have never really and truly known but who has been through hell just like so many others and is still here, somehow. Still has goals. Still has dreams. Still has a self inside. Still has a light somewhere inside all this inner darkness of depression and still fights on and walks through a lot more than what can be seen or expressed in words. 

This is just me. Yep, the fighter, the pusher-through. The trying-to-remain-an-optimist. The hoper. The lover. The never-giver-upper. The warrior. The mama bear mama-ing and trying to be the best example of surviving and thriving she can possibly be for her son, despite what she shares with the grown ups in her weakest moments. 

Here are the photos I chose – no makeup, no filters, just as I am about 99.9% of the time. This is JUST ME. I am beautiful as I am, I am strong despite my weaknesses, and I am enough.

“Climb the mountains and get their good tidings. Nature’s peace will flow into you as sunshine flows into trees. The winds will blow their own freshness into you, and the storms their energy, while cares will drop away from you like the leaves of Autumn.” -John Muir

A Rare Moment…

…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.

C.

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.