I have been asked quite frequently this month if I'm happy about my new diagnoses, happy to know more of what's going on? That's a hard question to answer, truly, but the answer I give is kind of a yes-ish yeah sure when I'm asked. I mean, yeah, but…

The news I got is not pretty or happy or pleasant, not by any stretch of the imagination. The hypermobility, there is no treatment or cure other than palliative care, meaning that my excruciating, unmitigated pain will continue without cease or relief, most likely for the rest of my life. Not only that, but it comes with joint slippage and dislocations. Definitely debilitating. Then you have the connective tissue disease and the arthritis, both of which include pain of their own but can be treated. However, there is a distinct possibility of degeneration in time, especially with the arthritis, which is debilitating as well even if the pain is alleviated. It would be nice to have some of the pain taken care of and taken away, even if not all can be. All that, on top of the Hashimoto's and Addison's that must be closely managed if I'm to live normally or stay alive at all, the food allergies and IBS that can make my life a living hell in the blink of an eye and last for weeks at a time,  depression that sucks me into the deepest, darkest pits of blackness without warning or mercy, asthma that prevents me from hard exercise lest I suffocate on my own carbon dioxide, colitis and internal hemorrhoids that leave me doubled with agony and passing blood and bloody mucus… and by the way, do you know how scary it is to use the restroom and see great amounts of blood among your excretions?! Yeah. Bleeding internally is kinda terrifying, no matter how close to the exit it is. And among all that I still have the original fibromyalgia, which is a roller coaster ride of bullshit all on its own. (One of the theories I've read recently about the rise of the chronic illness population is that with the medical advances we have, the weak that would have died off in past times are now surviving to adulthood and bringing their illnesses with them. Looking at the list above, I really think that I would have died off, no? I mean, I barely survived birth.)

So the answer to that oft-asked question would have to be "no". No, I am not happy about these new diseases. Relieved? Yes. Vindicated? Totally. But happy? No. No, I am not fucking happy. I am oddly proud that I was right all this time, though. At the same time, I'm done. I'm so, so, so done. I've had a fever for the past I've lost count days, with the chills and exhaustion that comes with. It's been the best I can do to get most of my dishes into the kitchen sink, but forget about washing them. I've had a minuscule to zero amount of motivation for anything in what seems like forever, and I'm so sick of it! I could go on and on with the complaints, but I'm tired of things being wrong and they just are and it doesn't matter if I write about them or not. I fear I am defeated at last… though I know in my heart that it is only temporary. I will rally and return to myself, someday… but for now, I'm wiped out. I haven't the heart to muster anything but naps.

I'm considering going to my grandparent's for a few days to rest, to let them take care of me a little. I yearn for a caretaker often and heartily, someone to lighten my load a bit. It's hard enough being so damn sick, but trying to fight through the medical system and do my truncated version of daily life at the same time is one plate too many to spin it seems. Who doesn't want their mommy to smooth their hair and make them soup when they're sick? If I had a dedicated caretaker, I wouldn't' have to worry about rides so much either. I hate searching for rides when I have an appointment. It's so difficult, and I generally feel like I'm taking advantage of the goodwill of my friends. I'm worried that I'll wear out my welcome one of these days. I had a thought, though, while I finally began to do some research into the lighter aspects of arthritis (I've put off any research or dealings with any of the new diagnoses until now. I just kinda don't wanna know yet. Don't wanna deal with it. Bleh.), that maybe I'll be able to find a support group here in the area. Friends online are a lifeline to be sure, but in the flesh support is another thing entirely. It would be especially nice to find a couple of folk in my age range as well, but I think that's pushing my luck for Yuma.

So, back to being all blah and curling up with my fever and sweatpants and electric blanket and tea and movie. I've been watching both of the 300 movies tonight in keeping with my rather black mood. The blood and gore used to bother me terribly, but I've learned when to look away. Also, Corey's dark humor has rubbed off on me a bit and I find some things amusing that I didn't used to. I learn so much watching war movies with that man. I swear he's an encyclopedia of battle tactics, armor and weapons throughout the millennia. It's amazing, really. Can't wait until he is teaching all that interesting stuff to our kids.

I broke down crying today during my appointment with my "lady doctor". (Yeah, I could just say gynecologist, but I honestly like the phrase "lady doctor" better. It sounds more elegant, don't you think?") Well, not breaking down as in sobbing, like buckets of tears, but I did cry and she handed me the tissues and I felt a little embarrassed because I try to keep my crying to a minimum, and definitely private and not in front of my doctors. She was very understanding, though-- I love having her as a doctor. I only see her once a year, but she's awesome.

She asked what had transpired in the past year, so I gave her a quick rundown on my health, on the status of my marriage, of the stress that we are under (and that's where I started crying), etc. She was very sympathetic and encouraging, and she said that she hates the diagnosis of fibro the most for her patients because it just causes so much pain and horror in their lives. She is a total believer in fibro and how it can wreck a life, and we even had a little chat about pregnancy and fibro, the risks and challenges, etc. She really wished me well and had good wishes for me that I would find out, through the doctors and tests, what on earth is really going on so we can treat this and get it under control.

Get this: even my gynecologist, after just a brief rundown of my health changes in the last year, says straight out that I am dealing with something beyond fibromyalgia. There is another disease at play here and we haven't figured it out yet, but it is continuing to drag me down and make life feel more and more impossible. I want to find the line between reality and complaining, but I also just want to vent and explode into the atmosphere with a supersonic silent scream at how hard every day is, how much I miss my old life, and how sick I feel every day and night, how much acute agony I chronically endure. Since I got taken off of the hydroxychloroquine until my appointment with my rheumatologist in Phoenix, my joints have jumped in on the pain parade full force, even more so than before. I am not aware of a single joint in my body that doesn't ache on a near constant basis, even without use or pressure.

I hardly do hot baths anymore because putting weight on my hands to lever myself up and out of the tub is almost unbearable; walking is painful at all times because of my knees, ankles, and all the articulations in my feet. Did I mention that I received news at my last pain doc appointment that I basically have gout?! I'm a 26 year old woman. How the fuck can I have gout?! So I got this paper that lays out the foods I can and shouldn't eat, but I'd just started to revamp my diet a bit and make it healthier so I can lose weight hopefully, but the gout paper basically told me to continue eating the way that I have been! Just with more veggies. I think it's just going to be trial and error, really. This gout thing is in conjunction with my pain doc's sincere conviction that I have a type of rheumatoid arthritis that doesn't show up on the AI blood tests, but that there are definite ways of diagnosing. That's a very valid theory, especially considering my poor joints now that I'm off of the lupus/RA drug and doing so much more poorly. (My friend with the same type of RA as the doc is postulating takes hydroxychloroquine for it and it helps her. We both think that, you know, if I'm taking an RA drug and it's helping and then I get off of it and I worsen, that combined with other clear symptoms makes a pretty strong case for seronegative RA.)

By the way, a blog that I follow regularly, chroniccurve, has an entire post called Seronegativity for Dummies, and I strongly suggest you check it out if you're at all curious about what the heck I'm talking about. She's a great writer, a strong advocate, and does not spread misinformation. Best of all? She's totally my age or maybe a bit younger, a peer! I love it.

I am looking forward to my appointment the first week of December at the rheumatology department of the University of Arizona. I hope it will be a good and productive experience. Yes, I'd prefer that the doctors are pleasant and funny and good looking as well as intelligent and diligent, but honestly all of that falls on the back burner when I regard information and a correct diagnosis. What would you do for a Klondike bar? I think the question is, what would you do for a real live answer? If I just had a reason for my every increasing pain and continuing fatigue, it might make it easier to bear.

I realized this week that even though he loves me and he is totally there for me and is my #1 supporter, sees everything… Corey will never really understand what life is like for me, what it's like to be sick like this, none of that. (Random insert, but I'm really tired and falling asleep while typing this, so I closed my eyes for a very long blink and had a momentary dream/vision/hallucination of passing out and being lowered to the ground by my group of friends… the ground that was made of various kinds of ice cream. Woooooow.) So, back to Corey. See, he rarely even gets sick, and any pain he's experienced has been acute in nature, not to mention that he's good at putting mind over matter and ignoring the discomfort. Sometime I'll have to share the story of when he sprained his ankle at school in the morning, walked on it the entire day without seeing the nurse, and then walked home. Crazy dude. Crazy! But because of his lack of experience with prolonged pain and sickness, he really has no vantage point from which to really see into my experience and sort of assimilate it into his own, to pretend that he's me in a way.

Honestly, that realization was a little bit devastating to me. I knew he had my back but I had always just kind of assumed that he knew exactly what I was dealing with and was choosing to be dense at times. Oops. Heh. But no, he doesn't truly get it, and that's okay. Who does, really, unless they've lived it? I mean… I know what it's like to have my bones feel like they're filled with fire and etched with acid; I know where the articulation of my joints are because the ache is particularly sharp, thick, and overwhelming there. I know what it's like to literally be crippled by pain and not be able to take a step forward or stand at all, even sit, due to epic levels of concentrated pain in one area or another. I know what it's like to suddenly be dizzy and lose my footing on a completely flat surface. I know the jolting awake from a presumably sound sleep for no apparent reason (or because the pain followed you into your dream and it got too overwhelming), maybe just once that night, or maybe again and again and again, every hour or half hour, and I know the feeling of overwhelming gratefulness that I don't have to try to drag my invisibly battered and bruised carcass into work every day. Objects fly from my hands when a twitch attack strikes, I can't walk, and it jerks and jolts already painful muscles and tendons and joints. I need the walker to walk, especially with my very low back having decided to give up on me in excruciating spasms and weakness at totally random intervals, but my hands hurt badly from the weight on them as I push myself along with the walker and from having to grip the handles the whole time.

On the other hand, that same walker allows me independence that I would not have otherwise, and it allows me to walk a half an hour or more every night, pain or no pain. It's cleansing, this walking, and Corey joins me for that, too. It's during the walk, during the errands on his day off, that I realize he will never truly get it unless it happens to him. Good god, may it never happen to him. He hasn't the patience or the proper personality to deal with such unrelenting pain and the constant onslaught of old and new symptoms that always keep you off balance just a little. He does not have the good humor to laugh through or about a particularly painful day or hour or situation. He turns into a grouchy, mean person when subjected to large amounts of pain that are "semi-chronic" (lasting for more than a day). I've seen it first hand! So really, it's better for everyone involved that I'm the sick one, not him.

As you can see, there is much for me to think about and feel when it comes to my current "lifestyle". I didn't choose it but I do have to make the best of it because it's not going away, not anytime soon by my guess, and I'd rather not waste a huge chunk of my life just waiting to get better so I can begin being the person that I want to and doing the things that I want to do. Hell no. Corey summed it up pretty aptly when he said that there was a lot of "trauma" around the change in my life and my sicknesses, and he's right. There is a lot of trauma, stuff that I need to work through, and I really want to. I tried a particular place this week that seemed promising based on a lead from Bisbee when I was visiting the other week, but the people here were somewhat rude and quite unhelpful and it did not pan out at all. No counseling for me at this time; can't afford to add another doctor to the mix right now. Not when every penny of what I use to pay my doctors and get prescriptions and such is a gift from family or friends or somebody. God I hope I can sell these crafts that I've made somehow. It's the only way I can think to make some money right now that's within my physical capabilities. I haven't made much in the past few weeks, though. Been too… depressed. Sick. Totally unmotivated on top of feeling so feverish and flu like and drained and just blah. I'm still super shocked that I actually had a great time in Tucson and wasn't all that ill.

I blame our mattress, actually. My sister in law's mattress helped keep my pain down, I think, but ours beats me up like hell. We need either a new mattress or one of those memory foam topper thingies for it, and we also need new pillows, like, SO bad. Have for a couple of years now. Anyway, I can barely keep my eyes open, and I'm just rambling at this point in any event. Hit me up if you wanna buy us a mattress or pillows, or if you wanna buy some crafts, yeah? Keychains, beaded autumn wall hangings, necklaces, earrings, painted prescription bottles, and more. Maybe I'll do pictures some time. Maybe. If I remember… and feel like it. Heh.

Also, I was just hit with a strong but irrational desire to go to the zoo. What's that about?

So it's been a while! After a while, news builds up and becomes all the newsier, meaning that I'm really doing everyone a favor by waiting a long time in between posts to make sure that I actually have something to talk about. The problem is that life just keeps happening, no matter whether I'm writing or not, and as it all builds up and builds up the thought of writing about it becomes more and more exhausting until I've totally talked myself out of it! Or sometimes I'll talk myself into it, but forget the most important parts lol.

So what's been going on with me? Well, I saw the head doctors, both of 'em (neurologist and psychiatrist) and I'm trying out two new meds. The one from the head shrinker is a mood stabilizer for Mood Disorder Not Otherwise Specified (because I'm too complex to just label with bipolar or manic-depression, of course!) and it has the potential to make me quite depressed. I've been feeling that for sure lately, though not entirely certain it's med related. I was having problems with depression at least a week before I saw the psych, and it only got worse for a while there but it feels like it's easing up some. Now I'm struggling with sleep problems. This could be related to an interplay between the new psych med and the mild sedative from the neurologist to keep me from twitching, but for a few days at a stretch now and then, and for past several days right now, it seems that I can't stay asleep but I can't stay awake either. The result is a groggy, drowsy, constantly nodding off lady who wakes up to find herself doing random things or finishing sentences that make no sense at all and have no bearing on what's happening around her. I'll have a thought process going on that is much like the thought processes you have in dreams, so very disjointed and unrelated to reality, but I'll come back and "wake up" halfway through or right at the end and say the last part out loud… but realize as I'm saying it that it's thoroughly nonsensical. I was talking to Bob Cat earlier today before hopping in an Epsom bath for my legs and was saying something about how it wasn't going to happen until I'd swallowed enough jade. It made perfect sense until I woke up at the jade part and finished my sentence, with a mental image of myself downing handfuls of jade beads like they were prescription pills! Crazy.

So there's that, and I feel like I'm going crazy and my days are just a muddle of nonsense, but when I'm "sober" I'm doing quite well. There's a storm front that moved through last night and today and I am definitely feeling it! I'm taking my regular strong pain killers, plus a couple extra (since I now have that luxury when needed), and drinking an ale now and then to help give the pills some "oomph". I know you're totally not supposed to do that, but even with the really strong pain meds I'm at "take me to the Emergency Room" pain levels, which is saying something. Can you imagine where I'd be at should I not have the good medication that I finally have? I'd be done for.

I still think about the last few months before I found this pain doctor, and how excruciating they were, and how I was honestly dying. My body was under so much stress from the unceasing, incredibly high levels of pain and other symptoms that my vital strength was just… slipping away. Fading. My organs were shutting down, bit by bit. Blood tests tell me that the functioning is good, so I'm happy about that. I'm mostly happy to not feel like I'm fading away, to feel like even though I'm still sick and being "attacked by gremlins" (as we've decided to euphemize the situation) and that won't likely change in the course of my life that I can still participate and be a real person, not just a fading ghost or a memory of the friend someone used to have.

I have had some interesting new health news from the past few weeks of dr's appts, and that is that I have a double stranded DNA, whatever that means. I guess I have to do some more research on that one and what it can mean, but one of my lupie friends assures me that it can mean any number of things. Then there's the whole Mood Disorder thing; that was a bit of a surprise! All of the doctors and specialists I've seen in the past couple of weeks, though, have totally and completely supported my EDS theory and my work towards going to Tucson to see the Rheumatology Department there for a diagnosis, if possible. The pain doc brought up another possibility, due to my "testing positive" for Lupus again (from blood tests done just last month), and that is arthritic lupus, rather than the kind that gets in there and destroys your organs and whatnot. He is seeing more of an arthritic type of involvement with the pain than simple fibromyalgia can account for, so we'll see. I have been dealing with a very strong and potent case of pitting edema in my lower legs, ankles, and feet as well as intermittently in my hands and forearms, but I have a doctor's appointment next week to see if that's of any concern at all. 

I started physical therapy yesterday, and I can tell that it's going to be grueling but beneficial. I'll have to keep strong boundaries with my therapists and not completely destroy myself trying to please them, as I have energy barriers that most patients don't have to deal with I think, but my therapist is very understanding and good to work with, so I should be fine. We'll be focusing on my back, and also on exercises to help me lose the weight that I've gained this past year from the meds, improper diet, and a sedentary lifestyle. They will be very valuable, as I'm hard pressed to find exercise that are effective yet low impact and considerate of my physical de-conditioning. I realized during my evaluation with my therapist that I'm really a lot weaker than I've ever been.

Oh, one more "exciting" thing that happened is that my disability claim was denied. This was rather expected, as the odds of getting approved the first time through are notoriously low, but I was hoping that we might be one of the lucky ones. The "Tiara Fund" fundraiser that I started has really really helped to take some of the immediate financial pressure off of us that we were facing, and so has the monthly couple-of-hundred from BioDad, but honestly the financial difficulties haven't eased up at all. If anything, they've increased since my doctors keep adding more and more specialists to my treatment team, and while that's a good thing I just don't have the money for all of these appointment copays and the bills that follow after and the prescriptions I need to get by!  Just looking at the funds raised is kind of laughable, because what difference is $400 going to make in the grand scheme of things? And yet… it lifted a heavy burden from the Robot's mind because we were not relying solely on his paycheck for basic living expenses and medical funds. He makes enough to keep us in house and home, but that's it. If something unexpected happens, or if I need some money for medical stuff, that's a straw that'll break our little glass camel's back. Don't feel sorry for us-- we're doing just fine, and there are plenty of folks who have it much tougher than we do, I know that. It just does get tough sometimes, living with the constant stress of "how in the world am I going to pay for this?!", especially when the "this" is necessary medical help.

Anyway, enough of medical and financial woes! Exciting stuff, exciting stuff… this is getting hard to do, as I'm still in that "drifty" state where I keep nodding off to sleep in the middle of typing. It makes my words a little unpredictable in spelling, and also the content of my thoughts a little outrageous. That last sentence, for example, almost came out as "It makes my outfits a little unpredictable, but they benefit from it in the long run." I had an image of this radical blue tiger stripe tie dye shirt-dress that I was wearing instead of my usual more boring clothes, and I was genuinely excited for a moment about opening up the package and wearing it for a minute… until I realized it wasn't real and that I was supposed to be talking about words. Gaaah! Focus, woman, focus!

I have a massage in just a few hours, which can't come soon enough, as the weather that passed over brought me to the ground with pain and swelling in my legs. I tried to get Drogo to rub my feet, ankles. and lower legs, and he did so briefly and reluctantly, but he really dislikes massaging. It's like pulling teeth to get him to rub my back or feet or something. Doesn't matter that I could really, really use it or that he could be "fixing the problem" as he so loves and is deeply motivated to do, he just doesn't like it and is bored by it and so I go massage-less most of the time. I often wake myself in the night with my arms lifted above my head, massaging and stroking my hands and forearms, or my face and head and neck. It's kind of weird, but whatever. I'll get by. I always do.

I'm seriously flagging here, so I'll wrap things up by sharing the most adorable thing EVER! My friend the Artist went to a Comic Con  a few months back, and I was super super jealous because she got to meet the most amaaaaaazing people within the geek culture and see the coolest stuff, etc. etc. etc. So she paid to have an artwork commissioned for the Robot and I, but it's taken this entire time for the artist to get around to it I guess. Today she posted it on my Facebook wall, and she had some really neat things to say about it in the conversation we had around the picture itself. Another friend of mine also commented on our marriage in a very positive way, and it was very encouraging since I've been feeling a little discouraged about our relationship lately (a lot of it fueled by chronic stress, and insecurity over my appearance now that I've gained so much weight). We even had a "talk" on Sunday, which was mostly me talking at him and explaining what I was feeling and why and citing some examples and him explaining his perspective and me reordering and reorganizing my thoughts around this new information and realizing that we're actually okay after all and it was all fine and I was just breaking down under the stress is all but he didn't mind because he's awesome like that and just bore up under it patiently like he does and walked me through it. I could wish that he were more passionate in daily life, more demonstrative of deep affection and emotional displays, but it is the solid bearing up and the refusal to be flapped and bothered and moved out of place that signals his love to me, strong and sure as a beacon. I just sometimes lose sight of his particular version of affection and passion, start comparing our relationship to "others"… and let me tell you something: that doesn't work. Ever. Even if I were healthy and we did have the sunshine and rainbows that we so long for (because we've walked in a miserable, cold, rainy mist for so long now!), every relationship is different and looks different and functions differently, and my main concern ought to be "Are we healthy? Are we okay with us?" Because that's what's important. It's not important whether or not he does _____ like so and so does (although that would be super cute and sweet and nice), it's important that he is still here, and not going anywhere, and that he still thinks I'm pretty and that he believes that I can still do things but he also doesn't hold any illusions about what I can no longer do and he keeps me from sailing off of a cliff with the best of intentions to carry me forward. The picture that my friend commissioned, it's… well, it's perfect. It's us. And seeing it, reading her description of her hopes for its creation, really helped to remind me that what we have is perfect for us, and we have made no mistake in coming together and creating a life that is a blend of the two of us. We have done just what we needed to, and that's beautiful. We're beautiful. And seeing us from an outside perspective did a little something inside of me to push away some of the stress and make a cozy little space where I could just nestle down and really see and appreciate the beauty of what and who we are as a couple.

Without further ado (because I'm totally rambling now), I give you… the Robot and his Lady!

My friend the Artist (not the artist who drew this), says, "I know the one thing I really wanted out of this, was to show that through the ups and downs of stressing over bills, you battling your illness and Corey stressing over how to handle things, that no matter what you guys can make it. And together you guys make a great team, warriors and lovers, conquering any obstacle that comes both your way. I remember paying her during the time when I was up in phoenix when you were going through at lot when I was reading your blogs. So I figure this would be a perfect gift for you guys. and I am very happy how well she was able to illustrate in what I wanted." My other friends said, "Oh my God this is perfect," and "JFC that is so Corey. Look at that leer."

In addition to those little gems, the "this is perfect" friend and I were having a conversation and my sex life came up as a topic. She had this to say, which (combined with the picture and sentiment behind it) totally cemented my faith in my relationship and its unique power and beauty.
"You two will be fine. I personally find that sex is best with a person you already fiction well with outside the bedroom, and you two are made for each other. Inviting someone to come over and play is a unit decision, a group activity, and only works because you two are already perfect together on That level. You'll be fine."

Yep. We are perfect together, and no matter what we can make it. We are warrior-lovers! The Artist also said, "And during the time I was reading the blogs up in phoenix, I felt really sad and helpless not being able to somehow get rid of the depression and the stress that you were going. So I figure I ask this, that way it shows some happiness that it can bring about through trouble times. I mean I can choke illness out of people, but I do much best to try to create something or think of something to present as a gift through help of others such as this artist or form a gift by myself. And of course I did my best to pay whenever money I had for the sushi up when you had your doctors visit. But yeah, I am going to cry up a storm here when I keep talking like this. Anyways you have amazing friends that have your back, how about that :)."

And she's absolutely right. With the Robot/Drogo firmly ensconcing me in his arms and my amazing friends at my back, there is no way I can not kick ass as I live life facing the gremlins. My various diseases may never go away and they may never be totally tamed and managed, but I'm not going away or being tamed either. I will continue to wear my tiara to doctor's appointments and to paint my walker bright colors to cover the shame and anger I feel at having to use it. I will prevail, and I will do so with or without this elusive thing called "sleep"! For now, though… I'm going to try to catch some. :)

Sometimes you need someone else to say something to remind you of a simple truth that you yourself may have forgotten, for whatever reason.

My simple truth is that my husband and I are fighting a hard battle and we are fighting it well and with much love.

Our former roommate is moving back up to the northwest for good, and our small knot of friends are having one last fling before he leaves in a few days with Olive Garden, various types of alcohol (for those who imbibe), and Dungeons and Dragons.

As Drogo, the roomie, and I were in the truck earlier during various stages of errand accomplishment (i.e. fetching food and liquor), the roomie (whom I will call The Viking) suddenly and seriously said to Drogo, "You know, I think you're a better person than I am. What you guys have to deal with, her being sick and all, and how you handle it… I just don't think I could do it. I mean, you just deal with it so well. I can just see the love between you two, and it gives me hope. But I don't think I could do that, and it makes you a better person than me."

We talked about it briefly, but it has been resonating around the inside of my head like the aftershocks of a gong ever since. It is so easy to get swallowed up in the sheer frustration of it all, to let the unspoken thoughts and words and fierce primal screams build up like sandbags against the doors of my heart and keep him out, keep everyone out until I am just alone, forever alone, rocking back and forth inside my own head and keening my sorrow and my loss and my pain to the hollow stars. But I can't let that happen. I've been trying to be proactive about communicating with Khal Drogo, about adapting our relationship around what my sickness is and what my abilities are, but it can be very difficult when I can go days without hardly seeing him at all because I am sleeping almost around the clock due to the fatigue that comes with my diseases and side effects of medicine and being worn out and worn down from such constant levels of very high pain.

Today, though, I was reminded of the simple truth that we are fighting a hard battle, and to go easy on us. There is no manual for this, no way to make it easier… and there is no one to take the pain and the symptoms for me to make it easier for either of us. There's a lot to deal with, any way you slice it.

We are fighting a hard battle, both of us, but we are fighting it well and we are fighting it with much love.

Update: 04/12/14
I mentioned the thoughts I had on this subject, basically a very distilled version of this blog post, to Drogo last night as we were out meeting friends for dinner. We were in the parking lot awaiting their arrival and I was keeping up a steady stream of conversation to distract myself from I-need-to-scream high levels of pain. I told him that what we are doing is very hard, but we're doing a very good job and there's no manual for this at all. It's unprecedented. He kind of paused for a moment, thought about it, and then said, "Yeah, we are. We're doing a really good job. Most people would crash and burn." It wasn't much in the sense that he didn't wax eloquent, but I could tell that it was both a novel concept to him and a very heartening one. It is something that will bolster him for the coming days as this fight for our marriage and our happiness and our life together continues. He's a good man, and this is a hard fight; he fights it well, and with much love.

What is it about death that makes us grieve? It can't be any kind of concern for the well-being of the one who passed away… Well, ok, maybe it can if you believe in hell and heaven and those kinds of things. But really, they, the deceased, are done. They aren't hurting, laughing, crying, missing you… any of those things. In the case of my beloved Chemo Princess, she's not sick any longer. There is no more fight to endure.

I think grieving is a selfish thing. It's not about them, it's about us. How much we will miss the person, how we feel cheated and robbed of the opportunity to build further bonds and create connections with that person… but that's okay. I mean, we all know it is so unhealthy to lose someone and not grieve. Our lives are pretty inherently selfish, anyway, no matter how selfless we try to be. Even the act of losing oneself in service to God is a very gratifying act for the individual. Those who indulge in self-flagellation to make up for supposed wrongs or to score points with God do so out of a motivation of self… a desire for security, eternal or temporary.

Then again, maybe that's why death is so hard. We opened up our selfish little spheres and brought someone else in. We connected with them, we made ourselves uncomfortable for them at times, we let our lives be about something other than us… and now that's gone. Now we're just a little more selfish than we were… or are we? Does it take a living person to form a connection? Does that connection just vanish once the person is no longer breathing, once the heartbeat stops? I don't know. I don't think so, though… Although no further connections can be made, really, death cannot erase what was. As long as one of you is alive and remembering, the connection stays.

Memories. A way to live on after dying. And what a fragile place to live… memories are so delicate, subject to change and repression and fabrication… But isn't it strange that you can make new memories with someone who doesn't live any longer? I know J created a set of new memories with her father D at her wedding, even though he had been gone for months. But she brought him into the event, and there he was. The plant that I brought home from his memorial… it thrives and blooms like nobody's business. I still have that connection to D with his plant, but he doesn't know it. I do. I am making memories with… a plant… but also with D, because I have connected it to him in my mind, therefore he is still a part of my life.

Our minds are strange places. So are the plains of our soul, littered with emotions, the topography constantly changing. You could get lost inside yourself and never make it back out.

It might be pretty plain by now that the Chemo Princess hung up her wand and tiara. Last night, in fact. I felt no disturbance of the Force, no sudden sadness… but I do today. I grieve, knowing that we will make no new memories together. Knowing that her husband no longer has a wife and her children no longer have a mother… at least, not one that can interact with them any longer. I rejoice because she isn't sick anymore. I rejoice that she is done with pain. I rejoice that she fought hard and well and no longer has to be a warrior. But I also grieve… because she was the warrior I looked to for strength. And if she's gone, how will I keep fighting? I am also feeling some twinges of anger. Yes, I am angry… not that she is gone, but that she is gone and I am still here and sick and have to keep fighting for I don't know what reason… simply because those around me would be sad if I died? What a reason to fight… it's both laughable and honorable. I am angry because she gets relief and I don't. I am angry because this is the second amazing human being with SO MUCH to contribute to the world that has been lost to cancer inside of a year out of those that I love. I am angry because she had a specific enemy to fight--cancer--and I don't.

She and I were kindred spirits. Hippies, lover of good music, theater, sparkly things, tie dye, gypsy wagons… and now I must carry on alone. I have lost a comrade, a mentor, a friend… and I am grieving.

Even in the midst of her battle, she is beautiful.

The family's message of love and support for the Chemo Princess about a year ago.

I know I've probably put these up here before, but they just keep coming back around and meaning so much to me… especially when I'm having a really hard time for one reason or another (like this one, which is entirely not my fault).



But now the current's only pulling me down
It’s getting harder to breathe
It won’t be too long and I will be going under
Can you save me from this?

Cause it’s not my time, I'm not going
There's a fear in me, it’s not showing
This could be the end of me
And everything I know
But it’s not my time I'm not going
There's a will in me, and now I know that
This could be the end of me
And everything I know
Oh, but I won’t go
No, I won’t go down

I look ahead to all the plans that we made
And the dreams that we had
I'm in a world that tries to take them away
Oh, but I'm taking them back
Cause all of this time I've just been too blind to understand
What should matter to me
My friends this life we live, it’s not what we have
It’s what we believe in

Give em hell, turn their heads
Gonna live life 'til we're dead.
Give me scars, give me pain
Then they'll say to me, say to me, say to me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say to me, say to me, say to me,
This one's a fighter

If you fall pick yourself up off the floor (get up)
And when your bones can't take no more (c'mon)
Just remember what you're here for
Cuz I know Imma damn sure

This video I watched this morning perfectly illustrates what I was talking about yesterday, about meeting myself and not defining my worth or capabilities by my appearance. It's definitely, definitely worth a watch.

There are some days when it's hard to be totally cheerful. I mean, there are some days where I'm just a little melancholy. It could be any number of things; perhaps I'm not feeling particularly well one day, or maybe I heard/read/saw something that triggered a sense of loss, or maybe it's that the moon is in the house of Mercury in retrograde or whatever. The fact remains that sometimes that melancholy is just… there. Today is kinda one of those days.

I've not been feeling really well since I had those three days of hell without my pain meds. Did I mention how god-awful sick I was? I really don't think you can comprehend it unless you've experienced it. I couldn't, and I feel uber sick all the time. It was that bad. Like, I never want to experience that again upon pain of death bad. The only thing that kept me going was having a "deadline" to look forward to as to when I could refill my meds. If I had to do that indefinitely… nope. Just nope. I'm not even going there in my thoughts.

Anyway, December was a hard month for me. There was the travel, cold, and stress that came with visiting my family. That was already difficult for me, and then there were two trips to the big city for doctor stuff which was also hard on me. Then at the end of the month came my three days of hell, preceded by a sinus infection which I still haven't managed to fully kill. (Here's hoping the antibiotics work!) It was just rough, physically, and I'm not recuperated yet. I'm exhausted and most of the time I don't know "why". Is there a reason, or is this just my new level of normal? It's hard to tell.

Okay, so I'm feeling crappy and tired and I've got this sinus headache that won't go away and I'm nauseous all the time and my stomach hurts badly whenever I eat something ever since the three days and I'm not really digesting things right right now, and I'm more achy and tender than usual, and… I just generally feel run down. Imagine that you've had a really bad case of influenza and a stomach virus for the past year and a half straight, with periods of getting other sicknesses on top of that. Congrats. You're in my life.

Sorry. I'm sorry. I don't mean to be a downer. I just see everyone around me with their resolutions for the new year, and they're exercising and eating food and getting healthy, and I'm… getting worse. Still. Guys, it kinda makes me want to cry.

I know my life is amazing. I know it. My husband is the most awesome of awesome things to ever be awesome, truly. I have fantastic friends. I have good health care. I have a family that loves and supports me, even if they don't all understand what I'm going through. Our bills are paid. We have the disposable income to be able to go to the movies once in a while, which we did yesterday. We have the money to support pets, and I love my kitties. Life is good, y'all. It's just hard to enjoy it sometimes when you feel so crappy and you're so uncertain about yourself and the future. I know my future with my husband is steady. (Did I mention that we're almost to our first wedding anniversary? I'm so stoked.) But my future with myself is still so up in the air and I hate that. I want to know, dammit! What is wrong with my body? What is the malfunction, and what can we do to correct it? I just want to know!

Did I mention that I had to step back from the HJ? I asked for a year's leave of absence to get better. I believe it. I feel it. This is my year. It's gotta be. I can't afford to get any sicker. What will I have left? I will still be running the teen girl's support group. That much I can and want to do. But the HJ, helping people, that's my heart and soul, man. To have to give that up is killing me. The HJ is exploding. We're getting big, we're getting funded, we're getting really professional and helping a ton of people. Positions are opening up that I am perfect for, and I want to jump in there and do it so much… but I have to sit on the sidelines and watch E scramble to find people that are half as reliable and trustworthy as I am. I have to watch her get let down time and time again because people are flakes, and I can't step in to pick up the slack. I am so helpless. I hate it. I absolutely hate it. It eats at me.

It's like I finally found my passion and my purpose in life, and now I'm forbidden to live it out. It's like being a dancer and succumbing to a slow paralysis. I just… I grieve for my losses, as surely as I grieve the loss of a loved one. Who died, you ask? The Cassandra that was, the Cassandra that could be and could have been… she's slowly but surely faded away into nothing but a faded memory, the echo of half-remembered song lyrics and the wisp of a scent long passed.

I watched What To Expect When You're Expecting again today. It's a cute movie, and I like it. However, it brings things up for me, as so many things do these days. I took a pregnancy test at the doctor's the other day so I could get a renewed prescription for birth control, and the nurse that took my urine sample asked me if I had kids and if I wanted kids in the future. I just smiled and said yes, but my heart started crying because not only did I have babies and I lost them, I don't know if I'll ever be able to create a family in that way and it kills me. I want to be a mom. Oh, I want to be a mom. (This coming from the girl who swore she'd never marry and have a family! But that was just protection to keep myself from getting hurt again.) First of all, I am unsure if I can even carry a child to term even if I were healthy. Secondly, there is no way that I could see a pregnancy through to the end at this point, or even care for the child afterward. As bad as I am right now while on meds, I would have to stop taking all of my medicines while pregnant for fear of damaging the fetus. That's not a viable option at this point. C and I have actually discussed this situation and what we would do if the birth control fails and I find myself pregnant. Both of us agree that we really would have no option but to terminate the pregnancy. Even thinking about that just destroys me, because I want to be a mom… Voluntarily giving up the life growing within me seems so counterintuitive. But it is what I would have to do. I hope and pray that I do not get pregnant until we resolve my health issues. I seriously, seriously do. Fortunately or unfortunately as the case may be, the women of my family are super fertile. (Did you know that I am the result of a drunken one night stand in a meadow? Parties, liquor, and ex-boyfriends just don't make a good mixture apparently. But hey, I'm not complaining. I'm rather glad to be here, actually!)

So, here I am. A happy little mix of weird feelings and positivity and optimism and fatalism and bleak uncertainty and maybe a few bad jokes just for good measure.

Oh, guess what? The last doc to prescribe my pain meds changed the frequency, so now I can take one every four hours instead of making myself wait six hours. It's actually quite an improvement, and although the meds aren't as effective as I'd like them to be (I'm never not in some level of pain, but it's the difference between bearable and unbearable.), it's making a big difference in the level and duration of the spikes of really intense pain. I'm quite happy about that! I still don't like that I'm so reliant upon opiate pain killers for even basic functioning, but I'll shoot a rubber band in the eye of anyone who suggests that I can go without them. The three days proved the folly of that hypothesis quite clearly. I can't wait until I no longer have to slowly destroy my organs to maintain my sanity. This is my year, guys. It's coming. I'm gonna get better. Just you wait and see! Until then… naps. Lots and lots of naps.

(Oh, quick funny story! At M's bday party last night a girl that I'd just met or maybe had met in the past said to me in passing, "You're looking really healthy these days!" I smiled and thanked her politely, of course, but inside I was both incredulous and laughing bitterly and hysterically. It's funny how well I do look, though, to be honest. I mean, I've gained weight but I'm still quite attractive, and there's really no outward indication of my health struggles except for the walker that I use when I'm out and about. I am both grateful and resentful of that. Hard to explain. But I've learned to simply accept the compliments with good graces. No one likes to have their compliments rebutted, no matter the reason.)

Survivor's guilt. Wikipedia says, "Survivor, survivor's, or survivors guilt or syndrome is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not. It may be found among survivors of combat, natural disasters, epidemics, among the friends and family of those who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off."

 I think that chronic illness fighters deal with a type of survivor's guilt, though it's not the standard definition. I mean, we have survived a traumatic event in a way, as our illnesses frequently strip away even the vestiges of our former lives, carving us into a hollow shell of what we used to be and planned to be. The guilt, though, lies not in the fact that we have survived and others haven't (in the sense that we lived and they died), but in the sense that we have survived and they haven't had to learn to survive this at all. We feel guilt because we do things differently to survive, and we no longer fit in with the lockstep of "normal" expectations. I feel guilty because I am a survivor, and I do whatever I have to to make it through the day. I feel badly about myself when others around me do not have to take such drastic measures to cope with the daily, minute stressors, when they are able to sally forth into the dawn, skipping meals and losing sleep and still able to put forth energy that comes from some boundless spring. Sure, maybe it's not as boundless as it would be if they properly tended it, but I have to concentrate all of my efforts and planning and foresight into cultivating the same trickle that they get when they carelessly wander through a day.

I feel guilty for surviving on my terms. 

I feel badly about myself when I don't have a concrete answer to hand out to people when they want to know what's wrong with me. I can't adequately combat the well-meant suggestions because I don't know if it would work or why it didn't work when I tried it, because I don't really know what's wrong with me.

What do you say when someone asks if you're feeling better? I smile, I make something up, and I feel guilty. I survive, however I have to.

I take my pain pills, knowing that they're damaging my body and not a long term solution. But what can I do? I went without for less than 24 hours and I was so sick that I could not sleep or eat, in addition to the ripping pain. Even now, I'm on my proper dosage but I've got this ever-increasing migraine pressing down on me. I know that a vanilla coke will go a long way towards setting me to rights, and I know that some folks would disagree, but I'm surviving.

What gets me the most is when I have to make the public appearances, to go out and do stuff, and people see me and think that I feel better. They have no concept of what I mean when I say that "I'm sick a lot. I'm sick right now." They absolutely cannot fathom the levels of energy that I'm losing just by sitting in a crowded room buzzing with conversation. They don't understand how much it takes out of me to sit in a chair and focus my attention on a stage, on the words being said. When I say I'm tired and I want to go home, it's not because I'm bored, or a little fatigued from the day's efforts. No, I mean that it's probably dangerous for me to be driving but I'll do it anyway because I have to. I mean that I'm having a hard time focusing my thoughts on conversation and it is difficult for me to focus my eyes. I mean that my body aches and my stomach is as upset as if I had a stomach virus. I mean that there is a thick, wet blanket between my senses and the world they're supposed to be interpreting. I mean that my pain levels are spiking, and I'm likely employing breathing techniques just to keep from groaning aloud. I mean that I can feel that I am going to be punished for this in not too short a time, and I don't want to be around people when it happens. I don't want them to see me at my weakest; it will just alarm them. I don't want the energy drain that comes from being around people, any people. (Except my husband, oddly enough...) I don't want noise, I don't want conversation... I just want the comfort of silence, my cats, my couch... familiarity. Comfort. Cool quilts against my face. A glass of water at hand, a mug of peppermint tea for my inevitably upset stomach. Dim lights for my aching head.

And so I try to leave before I get to that point... but I feel guilty. I feel guilty because I'm surviving, however I have to. I hate being in that place, the crash after the adrenaline-fueled outing. I'll do what I can to avoid it. And yet, so often... I feel guilty for surviving on my terms.

Why? I know why.

It's because I don't believe myself.

I know my body. I know my pain patterns. I can tell when I'm getting sick, when the pain is spiking, when I NEED another pain killer to stymie the big spike that's coming that kicks off a cycle of uncontrollable, fully body pain. I can tell when I need a nap. I can tell when the autoimmune side of things is flaring. Granted, there's still a lot I don't know, but there is also a lot that I've gotten good at pinpointing. I know when I need to eat. I know when I need to sleep. I know when I need to stop doing an activity. But all too often... I ignore myself.

Why?

Because I minimize. Ohhhh, do I minimize. I catch myself doing it when I do presentations about my abusive past. It wasn't really that bad, if you think about it. I mean, all that happened was... Did that really happen? I think I'm probably exaggerating what happened. It wasn't that big of a deal. I need to just get over it and stop assigning so much importance to little things.

I didn't realize how much I minimize until C and I were discussing some of my symptoms, and he mentioned my need to eat frequently and right. when. I'm. hungry. If I delay, I get very ill. He's seen it. It's not a secret. It's something I've been dealing with since my teen years at least, and it's just one of those things that we work around in every day life. And yet hearing him describe what happens to me when I get sick from lack of food, well... it was... empowering. It was like a light bulb went on in my head and I thought, "Aha! It's real! I really do get sick! I get very sick, and someone else has seen it! Wow... that sounds terrible. That's kind of a big deal. Huh."

I had a big tussle with minimizing after my rheum blatantly stated (twice) that she didn't see the need for me to be using my walker. I came away seriously questioning myself in many aspects, wondering if I've been wrong and just exaggerating my symptoms all along... if I can really trust myself to know when and if I need something... because, after all, she's a doctor, so she must know, right? I felt guilty for surviving. C tried to put that to rest, assuring me that I use it and my pain meds wisely and judiciously, and that I know my body. He stated emphatically that I am not a wimp or a complainer (which is a great fear of mine-- perish the thought that I should ever become a weak, dependent, whiny loser like G!), and that I know myself. I know what I need to do, and I do it, and the doctor can go fuck herself. I'm inclined to agree... when I'm thinking straight.

My emotions and the self-talk going on in my head tend to get all tangled up in a tangly ball of tangledness, and it gets messy up in there. One of these days soon, I want to draw up a list of "what I tell myself" and "what is, a.k.a. the reality of the situation". Kind of like a cross-referencing chart, you know? So that when I begin to tell myself a certain thing, I can look at the chart and say, "Nuh-uh, that's not how it REALLY is!" Then I can follow that up with the truth. I'm excited for that. I just don't have it in me to create that right now.

I went to an awards ceremony for contributors to the local community because I nominated THJ as non-profit of the year, and we made the cut into the final category! We didn't win, but we still got an award for making it into the nominees. One of our volunteers was also nominated for Volunteer of the Year, so she got an award too. It was a fun chance to dress up and meet a lot of important people, but I'm still getting over being so sick yesterday and I was drained and ready to go home by the time the mingling hour was done. By the time I left I felt pretty bad, and I am definitely being punished for my outing. But you know what? It was worth it. I have some thoughts on my boss's own chronic illness and pain and how that helps/hinders our working relationship and friendship, but now's not the time. This is long enough already. However, I'm not working tomorrow because I did tonight, and that's a whole 'nother load of guilt. She's all sick and in pain too, but she works herself into the ground from her home office... while I'm at home, lying on the couch. I'm sick, she's sick, but she's the one doing so much work... and I feel guilty for surviving however I must. But I must remember that working myself into the ground and possibly ending up hospitalized doesn't do either of us any good. I'm trying to cope long-term, here... trying to survive in length. But oh, the guilt...

I know it's there. I know partially why it's there, even. But what I haven't figured out yet is how to be rid of it. I think that chart would help. I need to set the Should Monster straight again. It's been too long.

*POSSIBLE TRIGGER WARNING!!*

I discuss my abuse in this post, not in a graphic nature, but it could be triggering for some folks.

So next week (if the gov't shut down doesn't interfere), I'm going to be giving a talk on domestic violence at the Marine base here in town. I haven't been in a domestically violent relationship myself, but I was raised in a dv home setting, so it definitely affected me. I'd like to share my talk here, complete with pictures, because C doesn't want to hear it. It's not that he doesn't care, it's that it upsets him too much to hear the actual story. I've told him everything, and he's compartmentalized it away, but he doesn't want to hear it again. It makes him very angry, and there's nothing he can do about it, so it's better to just not say. (That's not to say that he doesn't listen when I need to talk, but outside of that... I pretty much keep "work" away from our conversations, except in a general sense.) I'm really proud of him for coming along and supporting me during the trial. It was very hard for him to hear all the sordid details and to actually see G, to see me up on the stand and to watch me get cross examined by The Snake. He's such a good guy. Fun fact: he saw G at work while he was in the county jail waiting to be transferred to the state prison, and had to ask to be transferred to a different unit to work. Conflict of interests, you see. He might pulverize the guy. Heh. (Not that any of us would have minded, but they generally frown on that kind of behavior from officers...)

So anyway, here's the talk I'll be giving next week. It's not word for word, really, but I wrote down the story.

Recently married, co-running non-profit agency. Emotionally healthy and stable, have many fulfilling hobbies, a solid support system, and several close, meaningful friendships. Also have two cats. Looking at me, you’d think I am a happy, successful young woman with a bright future, and you’d be right. This was not always the case.

Teen years and early twenties: intense depression, uncertainty, paralyzed by fear of failure, low self esteem, delinquency, risky behaviors, suicidal thoughts, escapism, no sense of self, directionless. Felt responsible for family and mother, yet a failure. Codependent, dealing with PTSD unaware, zero boundaries, unrealistic expectations for self and others.

Very few safe people in life, one of them being now-husband, C. Met at 15, began dating later that year. Kept me safe and on the straight and narrow as far as he could- got me to work and school, kept me from drinking and drugs, from unsafe situations and friendships.

Another safe person E, met after disclosing childhood sexual abuse at age 17 and pressing charges. She was my victim advocate and maintained a friendship with me after my abuser received a conviction and the case was closed. It was while preparing for trial and telling the details of my childhood to her that I first began to realize that what I and my family went through was not normal, and was in fact a terribly abusive situation.

 Some of earliest memories are of being physically abused, but by a different man, my younger sister’s father. He was extremely abusive to my mother as well, and almost killed her at least once. One incident I remember clearly is the time that he placed me inside of a heated oven, resulting in burns on my back that required a doctor’s attention. Another time, he tried to force me to drink urine. On multiple occasions and for reasons I can’t remember, my mouth was stuffed with wadded socks. I was somewhere between 1 ½ and 3 years old. He was not the only abusive presence in my life- physically and I suspect sexually abused at day care, and in one abusive temporary home after being removed to foster care when the domestic violence situation with mom and my sister’s dad became apparent.

Mom got custody of me back and we moved to Y, where my younger sister K was born. We had a year or so of peace until my second abuser entered the picture. I was afraid of him from the beginning, as something about him triggered an innate sense of wrongness. Nevertheless, Mom got pregnant with my younger brother and married him.

I do not recall seeing him beat her the way he beat me after a while, but he did make her life hell in many other ways, such as forcing her to pack and move all of the household goods and furniture right after she got out of the hospital from delivering my brother and was suffering from a severe kidney infection. He refused to go to work frequently so my mom worked as much as she could to keep us in food and clothes, but he took most of her money to spend on his own hobbies. She had a secret stash of money for groceries that only she and I were privy to. He ignored us kids unless he was high or wanted to impress someone, and he pretty much ignored mom as well. When mom was working and he was supposed to be caring for us kids, the duties fell to me and I became the secondary mother of the home. 

This role was exacerbated even more when he began coming to my bedroom around age nine and molesting me. Years later, when I confronted him via phone call, his excuse was that he and mom were “having problems”.

His parenting style was erratic and wildly unpredictable, often meting out excessive punishments for trivial offenses that hadn’t been offenses previously. I bore the brunt of this, being the oldest, and the punishments ran the gamut from isolation to beatings (excessive “spankings” that brought heavy bruising and bleeding welts) to food deprivation. He acted as a grown child, with petulance and unrealistic demands of all the members of the family, favoring or ostracizing on a whim. 

In one instance, he returned from a trip with the three younger children and announced that he didn't like my younger sister and never wanted to take her on a trip again. I believe that she internalized this message, as her previously loving, outgoing nature changed drastically from that time on and she became sullen, withdrawn, and painfully unsure of herself. She has spent her dating years emotionally promiscuous, dating younger men who tend to idealize her and put her on a pedestal but who have serious emotional problems themselves and required her affection to fuel their self worth. She was in a long term domestically violent relationship (unbeknownst to the rest of the family) that resulted in the first grandchild.

As for myself, these formative years in such an emotionally, mentally, physically, and sexually abusive environment seriously warped my sense of self, my perception of healthy relationships both romantic and non, and my ability to cope with life stressors. In many ways, I was still the toddler and the child who did not know how to handle life or relate to the world around her, because I was denied the opportunity to learn these things. Instead, I was taught that I didn't matter, that what I said had no value or weight, that the mistakes I made while learning something new were to be punished and thus to be avoided (so trying new things was to be avoided, for fear of making a mistake), that words and promises are not to be trusted, and neither are actions. I learned to mistrust and fear authority figures, to accept violence and manipulation as a part of everyday life, and to believe that women and children are inherently inferior to men, especially men in positions of authority. I learned to keep secrets, to keep quiet and clean up the messes of my dysfunctional family rather than seek help for genuinely distressing situations. I learned that I do not have the right to say no to anyone, no matter how outrageous the claim or the imposition on me. I learned that I was helpless, always helpless. I learned to give up before I even tried. I learned that I was only as good as my contribution, that my acceptance or rejection depended on it. I learned to be a piss-poor member of society.

This is one of the great problems with domestic violence; it doesn't just affect the women or men in the abusive relationship. It fundamentally changes the children who witness it, who live with it day in and day out. Society is built on the backs of the family unit, as it is the family unit that produces the citizens who make the world go round. When the children are taught false and damaging “truths” about themselves and their relationship to those around them, they will grow up to act in negative, damaging ways. They will not respect laws or those who make them. They will not treat people with courtesy and respect. They will not build up, but they will tear down. Why? Because that is what they are taught is “normal”. That is what they see as being the basic model of the world.

I  was raised to be a victim. I didn’t go out and hurt others, but I was the one that allowed myself to be hurt. I was part of the perpetual cycle, because wolves only survive if there are prey to devour. I didn’t understand why I always felt so burnt out, how I kept getting screwed over and hurt, why I felt so paralyzingly guilty that I couldn’t say “no” to anyone. I didn’t know why I felt like such a fake all of the time, why I didn’t know who I was or felt that I was always pretending. I didn’t know what a personal boundary was. Literally, I didn’t know.

It wasn’t until I moved to Id and lived with a family there for several years that I began to understand how a healthy family functions. They had struggles and flaws, like any normal family, but they truly were a healthy, functioning family unit. It took quite a bit of adjustment on both our parts to get used to the arrangement- I didn’t know how to relate to a real family, and they didn’t know what to do with a girl who didn’t know how to be in a family! But we ironed out the wrinkles, and as I began going through counseling and intensively focusing on healing from my past of abuse, I began discovering emotional health and, more importantly, the real me. 

I grew and I thrived within the cocoon of that family, but the time did come for me to leave. I moved back here to Y, supposedly temporarily on my way through to CA, but I ended up staying as I got involved with The Healing Journey and in a relationship with my husband. I’ve continued to intentionally heal from the abuse that I suffered and grew up around, and part of that is using what I’ve learned to try to help others. I know that there are people in the world who make bad decisions. That’s not going to change. So I know that there will continue to be people that abuse other people. What I hope to do is help those who have already endured abuse to heal and become stronger, as I have, and in the process remove some of the people from that pool of possible offenders. 

It’s more than just working with The Healing Journey, though I adore my job, as hard as it is. To me, the most important thing I can do with my healing is to help my family. My ex step dad is behind bars, and I’m proud to say that I put him there. He deserves every year of the prison sentence that he got, and some more on top of that. But my mom was also abused, by him, by my sister’s dad, and by her parents and others before them. She is broken, too. My siblings grew up in the same household that I did, and they are broken. Through my urging, they’re all getting counseling now, and I share with them what I’ve learned when I can. When I go home to visit, we talk, and they can see the growth and healing in me. The ways that I interact with them have changed. The ways that I respond to them have changed. The way I think about things has changed. But most importantly, the thing that gives them the greatest hope for their future is my marriage. 

They’ve seen my mom go through one bad relationship after another, and, like I was at one point, have become cynical about the possibility or reality of a truly happy relationship. They see that C and I have done it, we’re making it, and we are genuinely happy despite the different setbacks that we deal with. I’ve had conversations with all of my siblings, and even my mother, at one point or another regarding my marriage, and they all express hope that they can have something like that someday. Even our friends say that. I make sure to emphasize to them that what we have is possible because we both insist on being happy and healthy within ourselves first and foremost, rather than looking to the other person to fix us or make us happy.

I think the thing that makes me the happiest is knowing that my children will never, ever have to experience what I did, or even my husband to a lesser degree. My children will not live in uncertainty and fear, will not nurse bitterness and hatred within themselves over very real injustices. My children will grow up in a steady, safe home filled with loving discipline and genuine acceptance. I honestly don’t know what they’ll turn out like, because nothing in my experience has prepared me for knowing the outcome of living in a home like that, except for my few brief years in Id. But I do know that my kids will also be very aware of the issues of domestic violence and sexual abuse, and that they and all of their friends will know that our home is a safe place for anyone to come to. So maybe my ex step dad tried to destroy my mom and our family, but it is possible to take destruction and turn it into a gift, if only we are brave and just plain stubborn enough to do it.