You remember yesterday/last night/actually early this morning, when I was musing about how I want to leave a mark in the world, to do something important and worthy with my life? The gist was that I couldn't really fully put into words what I was longing for, but I've found it! I found the words to explain my mission! Whenever I read the Hands Free Mama blog, it's perfect timing for something, either a struggle I'm going through or a thought or philosophy taking shape that needed a little guidance and a shove in the final direction. This time, I came across this article called Your Most Important Role, In Case Someone Forgets, and I'll go ahead and copy the sections that jumped out at me the loudest.

I ended up taking that two-hour drive with Scott. I can’t even remember if he got the job; I only remember the look of gratitude on his face when he dropped me off, saying he would have been way more nervous if he’d gone alone. All I’d done was simply remind him of what he already knew—the good stuff we tend to forget about ourselves in times of doubt, stress, uncertainty, and fear.

Over the past two decades, I’ve referred to that experience many times: As a special education teacher looking into the eyes of a young man who killed his pet … as a mother whose Noticer of Life child admitted she felt “different” from the rest … as a confidant whose friend confessed dark truths she thought made her unworthy of happiness and true love.

“You might not be able to see it right now, but you hold great value,” I’d said to all of these precious people. “I see your value. And I am here to remind you when you forget.”

I have a dear friend who has written a literary masterpiece coming out in April that “illuminates one highly dysfunctional family’s tentative, desperate crawl toward a life of meaning and worth.” My friend says it happened largely because I believed in her. What Katrina doesn’t understand is that I had no choice. Her gift was so obvious and so needed in this hurting world I simply could not let her give up.

While working on the manuscript for my third book a few weeks ago, I needed grammar assistance. I knew exactly who to go to for help.

“Thank you, literary genius,” I texted Katrina after she provided exactly what I needed.

“You’re welcome, soul changer,” she wrote back.

I began to cry.

Out of all the things I could be in this world, I couldn’t think of anything better than that.

Soul changer

I never had to ask my friend what she meant by the term.

I knew exactly what it meant because of the experiences I had with my husband, my former student, and my child.

It means seeing someone’s inner light when he cannot see it for himself. It means putting your hands protectively around her light through upheavals and uncertainties so the precious light doesn’t diminish. It means reminding people of the beautiful things they know, but tend to forget, about themselves.

And I don’t do it for others due to noble reasons; I do it because it is what I hope someone will do for me. And because certain people in my life have done it for me.

One night Avery was playing her guitar and singing her heart out. Suddenly, I remembered an uplifting video I wanted to show her. As a self-professed “fan of adorable old people,” I knew Avery would enjoy seeing this video showing the impact of familiar songs on despondent seniors in a retirement home. The video was so touching and so personal, the newscaster lost his composure at the end of the segment.

After seeing the way the guitar-playing music therapist brought foot taping and hand clapping to the nearly lifeless seniors who began to sing along, Avery jumped up with excitement. “Music therapist? I never knew there was such a thing! I could do that, Mama! I want to do that!”

“There is very strong connection between music and memories,” I repeated from the news clip. “Just imagine. You could transport elderly people back to a beautiful time in their lives. You could help them remember their best memories and remind them of who they are.”

Soul changer

It suddenly occurred to me that we all have instruments in which we can change people’s souls. Some instruments are more obvious than others, but we all have them. Sadly, some people may never even know they’ve changed someone’s soul.

Soul changers

Thank goodness, they are all around us. Thank goodness, they are within us.

My friends, what an important role each of you play in this often-hurting world. You have the power and the instrument to help someone remember these critical truths: You are worthy. You hold value. You are not alone. 

Perhaps you do it with strong hugs or comfort food delivered right to their doors.
Perhaps you do it with a make-up brush and healing hands.
Perhaps you do it with long drives, quiet presence, or faithful prayers.
Maybe it is your green thumb or the tender way you wipe tears.
Maybe it’s the way you remember people’s names and say them with love.
Maybe it’s the way you bring humor to heavy situations or drop everything when needed.
Maybe it’s the way you always know when to pick up the phone or send a hand-written card.

Soul changers

Sometimes all we need to believe in ourselves is one person to remind us of what we already know.

And like a familiar tune from long ago, just a few notes is all we need to start tapping our toes and singing the lyrics we never forgot. And low and behold, we find it’s just the anthem we need to carry on.

That, my dear friends, is what I want to be. That is the essence of what I found myself longing for after hearing Rachel Scott's story, after watching The Mission for the first time and every time after when I listened to the soundtrack with my eyes closed. That's the quintessential Mark Maker that I want to be, the one people remember as the changer and caretaker of souls. Even just one.

I know that I truly loved my work with The Healing Journey, even though it brought up a lot of difficult things for me in the dark of night, and I know that I would have thrown my whole self into my massage therapy, had I been able to complete the training. I continually gravitate toward these professions of healing and helping, because that's who I am. That's what I wanna be. Now that my body is in a state of constant rebellion I can't accomplish the goals I once had for myself, but the delicious thing is that I can be a soul changer and a caretaker of hearts even from the depths of my own pain and from the cushions of my couch. It doesn't seem like such an unattainable goal after all, framed in this kind of concept. The very very best part? I know that I've already met this goal many times over, but each time will be beautiful all over again. Also, when you invest in the people around you, they tend to turn around and take care of you right back, which I've experienced much of. Now that I'm more dependent than ever, I have a lot of good people who have my back. Give and receive, ebb and flow.

Suddenly the next 28 years don't seem so much of a burden anymore.

I got my hands on an off-brand of Nutella that I can actually eat (can we please stop with the gratuitous soy usage, corporate America?), and I understand everything now. I mean everything. The meaning of life, the universe and everything. Turns out it isn't forty two, it's chocolate and hazelnuts. In spreadable form. The gods have descended and Eden is here. It's like the Ferrero Rocher chocolate candies that I've loved so much for so long but can't have anymore (thanks again to the soy problem) have exploded all over this whole grain toasted pita…slice? (what do you call a single piece of pita bread in all its pockety glory?). Of course, the whole wheat makes it healthy. Right? Right. Also, as a completely pointless side note, I must say that not indulging in the Oxford comma for the phrase, "life, the universe and everything" is killing me, but I am pretty sure that's how it's written and I want to be faithful to the original text. Douglas Adams deserves it. (For those completely lost, I'm referencing "The Hitchhiker's Guide to the Galaxy" series by Douglas Adams. It's a series of books that is completely silly, mind bending, and entirely sensible if you read them all through.)

Chewing this deluxe chocolatey treat is killer, though, thanks to the good ol' oral surgery recovery. The gaping sockets where my 3 wisdom teeth used to be are pretty much alright, in that there's no easily discernible spikes of pain above what I normally experience, but the bottom left jaw pain has got to be the incarnation of everything evil in the world. Due to the positioning of that tooth, the extraction involved cutting open the gum and sewing it shut again afterward, and this stitched area is causing me debilitating pain. Yes, even with the copious amounts of strong pain killers that I am taking, and yes, even with all of the little countermeasures you can take against pain in addition to the pain meds, it's keeping me from sleeping at night, keeping me from eating solid food, giving me migraines, making the hours pass soooo slooooooowlyyyyy, and making my supply of pain killers look suspiciously puny. Once or twice a day I give in and eat something that requires chewing, but ouch.

I finally caved yesterday and started applying ice directly to my jaw, and that was an amazing breakthrough... at first… for a bit. Now it doesn't seem to matter. Sorbet has been a helpful friend as well, kind of numbing things out with cold from the inside, plus it's super delicious! The weather, though, has been affecting the pain levels. Clouds have been coming and going and bringing rain, so on the days that the weather is changing my pain is skyrocketing. On the calm days with no clouds and no changing, I was able to get it mostly under control. Since I cannot control the weather, I will simply do what I can to get this healing up as fast as possible. It's nice to know that this intense pain will end at some point. I'm not used to thinking that way anymore.

So. Birthday coming up in a week, give or take a day. I'm going to be the ripe old age of 27. I think it's fair to say that I'm definitely not where I thought I'd be in life at the moment, and things are going to be different than I had planned, but I think I'm coming to grips with that. I feel like I'm coming to after some time in a thick, numbing sleep, coming back to myself and gulping a huge lungful of air. I've had several "off" months and lots, lots, lots of heavy blows in a row. That's had me staggering, trying to come to terms with reality; adapt, adjust, and survive. I have not lost myself, though, and I feel that irrepressible sense of self rising yet again, despite the surroundings and trappings that modify the expression.

While I was on a walk the other day I caught sight of the desert mountains in the distance, and the dark-light pattern of the clouds and sunlight passing over them in turns gripped my heart as it always does. I felt the familiar yearning for a good, solid hike, followed by a mournful thought that hiking is out of the question when I'm scraping along the road with my walker. The second thought I had was, "Fuck that noise!" I refuse to let myself be bleached barren and bled dry by my disease(s). When I go hiking or backpacking I definitely won't be able to travel as far or as fast, but that doesn't mean that I have to give it up entirely. Yes, there's something to be said for working within the parameters of reality, but there's something more to be said for not giving up on yourself and refusing to become a bland mush of a person when faced with limiting circumstances. So no, I won't be a massage therapist like I had dreamed and planned, because that's just not realistic when you consider my connective tissue disease and my fatigue and pain levels. It's not a matter of want, it's a matter of not physically capable, no matter how hard I push myself and aim for the dramatically inspiring documentary story of a life.

But I still massage my husband, my friends, when I can. When I can. I've adapted. I've altered. But I'm not giving up, not unless I want to, and for my own reasons. Because while I refuse to be conquered and give up on my hobbies and my interests because of circumstances imposed on me against my will, I also refuse to be stuck doing stuff that I no longer really want to do or that I didn't want in the first place, simply to prove that my illness "doesn't define me" or whatever. If I were doing stuff just to prove that my diseases don't have me by the balls, in that moment I'd be proving myself wrong. It's a tricky thought, and a tricky balance, and it's taken me some time to get to this place. At first I needed to simply withdraw and lick the wounds inflicted upon diagnosis, to simply ride the tide of one appointment after another, and I'm okay with that. There will be times when I do so again, and that's fine. So long as the reasons are mine, and I'm doing it for me (and not because I've been bullied into it by people or my diseases), I can do whatever I need to do to get by. For me, for now, it means letting myself emerge once more, a slightly different incarnation with all the spunk and sass of my former self combined with a new balance and perspective tempered by pain and trials.

Hey, did I mention that I got glasses? Yep, I sure did, and they make me look hot. I'll get a picture in here sometime when I can, but for now just take my word for it. Here's how great they are: I actually feel more attractive with them on than without! Yeah, I know. That's never been a thing for me before. In fact, I feel very good about my appearance in general lately. Sure, I'm still overweight and trying to slim down, but my hair has been growing out and is now a chin-length bob in my natural color, my skin is clear, I've got really cute glasses, I finally found a type of bra I can wear comfortably, thus my breasts and cleavage look fantastic (even if they *are* sports bras), and I've got some really cute earrings. I want to get more holes in my ears and I've been playing with the idea of a nose ring, a very thin and delicate hoop (see below), but I just don't think it would look that great.

I've always wanted an eyebrow piercing, however, so maybe I'll go for one of those...

I definitely want what the ponytail lady (that's Fergie, right?) has in the way of earrings-- a whole ear-full, all the way down. (I just hope my babies don't decide to reach for the shiny things, you know? Yikes!)

Of course, I want a tattoo in the worst way but since I struggle with hyperalgesia and always will, I figure that it's probably out of the question. Unless I were to use medical grade anesthesia or something for the procedure. Hmm… (Kidding.) My first tattoo, though, would be this:

To wrap things up, and on a completely unrelated side note, I love my kitties. We took Fancy, the new cat, to the vet today to check out her ears--either mites or an infection, either way real bad when we got her but improving while with us--and she behaved so well both on the car ride and during the appointment itself, even while they made use of the rectal thermometer. I know that I wouldn't be as quiet and docile as she was if a rectal thermometer was involved in my exam! Turns out that there are no mites, at least not right now. It could have started out as mites and then progressed as they left their waste behind, but she has a fungal infection that a course of ear drop medication should clear right up, and I expect that we'll see a bit of a change in her disposition once that's better. She's already sweet now, but there's a difference between being nice and sweet while you're in discomfort or pain and being sweet and nice because you're no longer in discomfort or pain. You know what I mean? Well, right now she's kind of a bitch to Bob and Juneaux (pronounced "juno", by the way), hissing and swiping when they come near or if they (try to) pass by, growling at them if she so much as sees them, but it's just driven Bob and Juneaux closer which is what I was hoping for. They're becoming bros, which didn't happen before because Bob actually had his bro, Cortes! So we'll see what happens as the kitty soap opera continues. Tune in next time for more drama on As the World Tunas/General Pawspital/All My Kitties/As the Fur/Litterbox Turns.

By the by… Which is your favorite kitty soap opera name? Got an original one? Let me know in the comments!

Prolly more thoughts on this later, I dunno. Right now I'm just copying and pasting a post I sent out in one of my closer-knit fibro support groups this morning.

Well, I sure feel invalidated as hell this morning. I posted that AWESOME picture that I tagged y'all in (I'll include it here for those who I'm not friends with outside of the group) and not only does everyone think that I'm sitting here with a knife to my wrist apparently, I got a message in the wee hours of the morning and one that was there when I signed on this morning, and I dunno if you guys will catch the same vibe as I do but I'm totally getting the message that "you're too negative and you focus on your pain too much; knock it off and be cheerful, eh?" which is incredibly discouraging and angering and all kinds of things that I really just don't know how to articulate. Thoughts?

Last night's message: "Hello? I'm I don't know who you are and you don't need who I am but I am one of R's friends and somehow I've been able to see your posts on my bulletin... is something wrong? I've been kinda feeling down too but I shouldn't be.

Sorry so many typos on there lol.

I meant to say we don't know each other. I've been seeing the... negative stuff you've been posting. So I wanted... to know what was wrong... if you wanted to tell me. I can understand if you find it weird to talk to someone you don't know about something so personal but... I'm going to be moving out of AZ in May and I'mm feeling kinda down too so I thought it would be worth a shot."

This morning's message from a different person (Note: she had asked to be untagged in the photo because it looks bad for her, professionally as an actress.): "Yeah it was a cool piece but yeah most of the people who still use Facebook are actors directors producers etc so I stopped putting anything on there about pain or pretty much anything negative or if I do I try to make it funny. I stopped my blog a couple months ago my pain is what it is it's been two years this is where it will likely stay thinking about it just gives it power. Can I suggest something for you to read? Maybe you are not at a point where it's something yiu can absorb I wasn't ready when I bought it a few years ago read three pages and out it away but the secret has changed my life even before I read it. I started living the law of attraction and yes I still have a bad day but I'm very cautious about what I think and say bc what you think about you bring about. I'm a therapist and never got any if this but so much has changed w my pain my acting everythjng that I have to believe there is truth. Google it and try it for a couple weeks maybe it will help. I don't go to meetings lol I don't do anything other than watch my thinking patterns Just a thought from what I see in your patterns "

I responded, and I'll post that too if you want, but this response to MY response just makes me even more frustrated (but I KNOW that wasn't the intent, to attack, I guess I'm just sensitive???).

Note: Here's my response, for clarity's sake. "I get what you're saying, and that's something that I *do* try to live in my life. I'm very conscious of my thought patterns and I monitor my thoughts and feelings quite closely (hence why I blog and talk to my husband and besties all. the. time.). For me, though, it's more than just "don't think of negative things" whatever. I've learned that--and this is just for me, you understand, because I tried it the other way and it just made me miserable-- it is more healthy and productive to acknowledge whatever negative thoughts or feelings I have, think/talk through them, and then move on with my life. I don't wallow except on rare occasions, because everyone needs a pity party day once in a while I think, especially ppl who hurt all the damn time. But for me it's best for my mental and emotional health to acknowledge the stuff that ain't so positive, try to find something funny in it, and keep going.

The "don't think about negative things and you won't bring negative things into your life" dealie just doesn't work for me. And that's okay. I'm glad it has done a lot for you. For me, I put as much love and light out into the world as I can, and I get a TON back in return. But I don't dare gloss over the bad parts because it all just festers and creates "disease" in my life. Not the physical disease, of course (though our emotions and whatnot DO have an effect on our physical health as I'm sure you're well aware), but… oh, how to explain it? Anyway, I've known waaaaaay too many people that pretend nothing is wrong, ever, and we should only think and talk about positive things, etc. for me to want to go back to that kind of thinking intentionally. (And it could be that what I've experienced/read/seen is a distortion of what YOU are talking about… I mean, connotation is a hard thing to convey. You say "banana" and we will each have a different image that pops into our head and different feelings about the word though the core concept is the same. Try that with the word "love" or "happiness" and things get crazy lol) It's been my experience, working with abuse survivors, that acknowledging the negative stuff and processing it appropriately is what robs it of power, not pushing it away in favor of focusing on the positive. I believe that there's a balance of the two that can and must be achieved for optimal emotional and mental health. Maybe that balance doesn't always come across on Facebook, but this IS the place where a lot of my support system is located, and also where I try to raise awareness about the very real nitty gritty of what it's like to live with chronic pain, chronic depression, chronic illnesses and diseases, and PTSD and other abuse survivor related issues. On a totally unrelated note, have you ever thought about creating a facebook page strictly for your professional life? One of my artist friends has done that because of some of the same things you mentioned-- potential employers/buyers, professional peers, etc. It's a way for her to display her portfolio and other business related stuff without it getting cluttered in with her personal stuff or lost and vice versa."

"Thoughts are def hard to convey here bc yes I def still acknowledge the bad things and I've had a lot. I had a bad couple days and I have allowed myself to feel upset and angry it's more how I think about it that changed. I guess my perspective is different. I found out heartbreaking news about my ex acknowledged it would make me sad processed it talked to a couple people quickly but cautious of the words I used when talking about my future for me not the universe and then it passed. Everyone is different. I guess I've been thru so much bad in my life including men hurting me and pain obesity and have fought so hard I finally just found a balance or something that works. I don't tell most people about it bc it sounds too new age even to me lol. But I thought I'd ask but I get it's not for everyone. I'm also alone so I have to do things different. My support system is here but not much emotionally and I have no spouse or anyone to talk to or depend in to listen it say it will be ok. It's all up to me and that's ok. I've never been my own rock and I'm learning
Well I'm glad u have a way that works . Feel better"

So I guess I'm just super irritated because I'm always very self-conscious about how I come across, whether it's appropriate or if I'm being too negative or angry, etc. I know she's just trying to help, but it feels just as invalidating as someone who knows just what I choose to present to the world regarding my pain coming up and telling me that I've probably been handling it all wrong and this is what helped them and I should consider doing it that way. Wait, come to think of it… that's happened to me countless times, with all of my diseases. And my food allergies. And it pisses me off, guys! I'm just like, you know what? Even if I chose to be completely negative and wallow in my misery and my pain and my agony and not try to find the positive and do my best and find humor in the situation and be totally authentic about my struggles and where I'm at, that is my right. That is my right as a sick person and that is my right as a healthy person. So stop fucking telling me how to handle my shit, okay?!

I was so pleased with myself because I've progressed so far on acceptance of my fibro diagnosis and that I'm not going to find an underlying disease to treat and miraculously recede my fibro to livable, which is a hope that I was clinging to until the "just fibro" appointment earlier this month. I've come across some well of determination, hope, and inspiration that I thought had dried up long since, beaten down by the daily grind of such incredible levels of pain and other miseries, and life is looking up for me. And then… this.

Maybe it's no coincidence that just when I seem to be getting my feet under me in whatever battle I'm fighting (emotions, facing and processing and healing from abuse, fighting depression, my health, my food allergies, etc.) something comes along that tries to knock me on my ass again. Maybe I am just too open and authentic. Maybe I leave myself vulnerable to attack. Maybe I leave myself vulnerable to those who think they know better. God, why are there so many of those people in the world?!

Anyway, I'm quite irritated, angry, frustrated, guilty and not sure if it's legitimate guilt or totally illegitimate and false… Because of the crazy dysfunctional environment of most of my life, I have a hard time telling false guilt from legitimate guilt, and I tend to take on guilt that isn't mine and shouldn't be aimed at me at all. So I never quite trust the guilty feelings anymore, because I know that it quite probably isn't true or to be trusted. Generally, I'm above reproach. ;) So this is why I blog and openly put things out there in social media, to get the feedback of the wide network of people that I trust. I thought I could trust this chick; she's a fibro warrior too, a psychologist, an abuse survivor… but she took the opportunity to slip the sword between the ribs, probably all the while thinking that she was just helping me let out the bad blood and balance my humors! And that just goes to show that you can't trust everyone with your pain. According to her theory, I suppose I should stop this blogging and sorting through my thoughts. Which, as we all know, is baloney for me, as this blog is the thing that has helped me sort through my thoughts and feelings in a semi-coherent manner for years. I suppose that's what smarts the most-- the suggestion that my coping methods aren't good enough, that I've been doing it wrong this whole time and any progress I've made is incidental.

Enough ranting for the day, I suppose. I just had to get all this out there, and boy do I feel better! Whew. It's no longer roiling inside me in a jumbled mess, confusing me and making me heart-sick. Ahh. I seriously feel as though I can physically breathe better now.

Suck it, actress lady. You have your ways and I have mine, and mine are fucking awesome. And no, I'm not still bitter. :P

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.

Having been a part of the chronic illness community for about a year now (or at least on the fringes, watching what goes on), I've come across many a list of what not to say to someone who is chronically ill, or things that chronically ill people don't want to hear, etc. Shoot, that's what Chronic Illness Cat is all about! I think some of it comes from the fact that people with chronic illnesses feel marginalized and discounted by society's understanding of and relation to sickness and the mainstream attitudes that accompany it. I mean, here in America, sickness kinda makes us uncomfortable. So does poverty, pain, abuse, disease... anything that's not happy and shiny and new. Unless it's particularly awful and heart-rending, in which case we'll obsess over it. (This takes me back to my very first post in which I muse about the pursuit and idolization of perfection in society and how that has affected my thinking.)

So with that uncomfortable feeling as the backbone of this attitude, I would say that the muscle and flesh of it is the expectation that all sickness/disease is acute. That is, you get sick and then you get better. Even those diseases that we have claimed as poster children (think breast cancer or AIDS) are of a similar vein; either you get better or you die. There is a definite "end", a trajectory that you can pinpoint your particular location on. Well, with a chronic illness like fibromyalgia or UCTD... there is no trajectory. There is no "end". And that brings me to the point of this little musing/rant.

I get annoyed sometimes by the things that people say when it comes to my illness or my symptoms or how I'm feeling physically. I mean, I get that it's the elephant in the room, since it's kinda taken over my life, but one of the things that irks me a little is when people ask how I am, then tell me that they hope I feel better soon, or better yet, "get better". I'm always tempted to take the easy way out and just say "fine", but I realize that this would only feed the monster. Once I say "fine", the next time that I'm actually honest and say that I feel pretty horrendous the person is going to wish me well so that I can go back to being "fine".

I'll let you in on a secret. Now that my life has altered so drastically, I don't actually mean I feel "fine" when I say that. It just means that I don't want to bring you down by telling you that I feel awful, because you either are made uncomfortable by my physical misery or you will pity me (which is a completely different animal from the genuine compassion that my support system exudes... which is why I'm lying to you and saying "fine", because you're clearly not in my support system.). Also, it could mean that I just don't have the energy to explain why I'm not feeling fine, and what exactly is wrong with me, and that I'm anticipating some sort of advice that I don't feel like dealing with or dodging. This is especially true for very religious/in the medical field/a natural health and healing advocate/some combination of the three/good god help me if it's all three people. Another possibility is that I sense that you are merely making polite conversation and you don't really care how I'm feeling, so telling the truth would only a.) make things awkward, and b.) imply a level of friendship and confidence that I'm not willing to bestow on the likes of you.

I guess it's just that, if you don't know me, then I'm obviously not going to go into gory detail unless asked. (Hey, sometimes it happens.) If we're only acquaintances, then I'll probably go with "fine". But if you know me, even if we're not close or you're not a part of my support system, then you should know that I'm pretty damn sick. You should also know that it's not going anywhere, so wishing me a "get/feel better soon" is basically just blowing hot air up my butt. I'm not getting better, folks. I might be sustaining, sometimes, but barely. I feel like I'm getting worse, just from the sheer numbers and scale of my symptoms. My life is hard, and hearing "feel better soon" feels like a casual dismissal of everything I work so hard to do. I'm upright, and maybe even dressed. Do you know what an accomplishment that is? So telling me to "feel better soon" is just like... so minimizing. Taking it and scaling it down to the level of the common cold. Like telling a double amputee that you hope they feel better soon because you twisted your ankle last week and you totally know how they feel.

It's just that... I mean... "feel better soon". If you know me at all... then you'll know that I won't. I'm not going to. And I don't want to be all Negative Nelly here, but I'm just speaking from practical experience. I mean, yes, we can all hope that I feel better, that my symptoms recede, and that I can live a normal life again, but... I guess I've kinda given up on that. I mean sure, it'd be nice, but my focus has shrunk to dealing with the immediate present, to getting through each day. I might take things a week at a time, but that's about as far out as my scope goes right now.

And you know, I'm sure it comes from a place of "I don't know what the heck to say to you" and "I genuinely care about you and wish you the best". It's just the way that I'm taking it. It's not how they mean it. I know this. But it's still irritating... yet I choose to just let it go, because I know it's on me, not on them, to navigate the world with this handicap. I don't ask them to bend to me, watching every word they say. It's unrealistic and unfair. So I'll just come here, let off the steam, and then make my merry way back into the world. I mean, shoot... I didn't know a thing about chronic illnesses or chronic pain until it smacked me upside the head, so how can I expect everyone else to know and understand what I'm going through and where I'm coming from? There's just no way.

I'm just kind of thinking about life today... You know, 42. The meaning of life, the universe, and everything. Well, my life, anyway...

Don't get me wrong. I like my life. Love it, in fact. I've got a little house of my own, I've got a solid relationship with a wonderful man (though lord knows it took years for that to be able to happen!), my husband has a steady job that pays our bills (mostly... if I could keep out of the danged emergency room, that would help), I have health insurance, the medicines that I need to keep me alive (wish I were exaggerating on that one), I have a job that I love with an understanding boss, and we have food in the cupboards.

That being said, there's also a lot that sucks. I mean, it's hard. Really hard. Every day is a battle, and a fierce one. I'm very grateful for my antidepressant. Even just the low dose that I'm on has helped to smooth out my peaks and valleys so much... it's a relief. That was a hard, draining battle to be fighting all the time, and it was making my health struggles worse. Still, I must fend off the grasping tendrils of depression almost every single day. There are days when I wake up bright, cheery, and not an emotional cloud in sight, but... those are the invisible pink unicorns, pretty much. The purple elephants. Oh, sure, I don't spiral downward into the black gaping maw of that horrible pit that I grew to hate and yet know so well. Well, not often... but I still have those voices in my head that scream and holler at me my worthlessness, my failings, the futility of my fight or of pressing hard after anything good in my life... because really, I do have to chase the good things in my life. Nothing has fallen into my lap. I've worked damned hard for the good things I've got, and I refuse to let myself botch them up.

I've had a lot taken from me. My childhood, for one. Abuse, molestation, more abuse, dysfunctional family dynamics, playing the mother to everyone including my mother, more abuse... My family. Sibling bonds torn apart, taken from my mother on more than on occasion, divorces and betrayals... My sexual purity. I can't even be sure I was a virgin when C and I went on our special camping trip. I have no way of knowing, really, because so many of those years are lost to the blackness of my mind, willfully blocked to save my sanity. My mind. Poisoned genes passed down to me through generations of mental illness, a past that guarantees PTSD and depression, and I am helpless to resist the black tide that has washed over me for so long.

And just when I thought I had it all beat... just when I had climbed out of the fighting pit that I was thrown into at birth... I get sick. Real sick. Fuck my life. Now my livelihood is taken from me. Parts of my identity. Dreams. Plans. Hopes. Aspirations. Gone. All gone, in the span of a year. In place of my bright future, I am left holding ashes. The family that I thought I would have... gone. Two miscarriages and a diagnosis later, I am left wondering if I will ever hold the living embodiment of our union? I wanted to travel, to work for the forest service or a national park, to live in Alaska and hike Denali, to hike Mt. Whitney, to travel the floor of the Grand Canyon from rim to rim, to fly to distant lands and eat the local foods... I can't even eat out at restaurants. The past few days, I haven't been able to stand for longer than 5 minutes because of pain and fatigue. I want to see my friends, to go to movies and go out to eat and hang out at houses and go to the store or even just window shop, but I can't. Those basic, simple pleasures of life are denied me, and I weep.

I weep for the unfairness of it all. Haven't I suffered enough? Haven't I been through enough? When will it end? I was going to be a massage therapist, a mighty advocate, an outdoorsy photographer. I was going to be a survivalist, living off of the land and cutting my own wood. I was going to bear and raise children. I was going to visit every single state in the US, and other countries besides. I was going to go to Italy, France, Scotland, Ireland, England, Japan... And now? Now I lie on the couch, watching the clock and anxiously awaiting the time for my next pain pill.

So how, I ask you... how the hell am I still happy when I see my husband walk through the door at night? How am I still happy when I go to work and spend my hours tidying, filing, typing, creating, listening? How am I still happy when I create some especially tasty dish to savor, or even when I have a good cup of tea or a particularly perfect bowl of oatmeal? How am I still smiling when I see the pictures of my tall, beautiful sisters clad in pink and white and covered in flowers?

I don't know. I really don't. By all rights, and if I didn't have love to anchor me here, I would have killed myself by now. I am tempted to believe that the heart can only take so much suffering and pain before it breaks and all hope is lost, but... it seems that my heart has the capacity to absorb more suffering than I ever would have imagined. Maybe it's love that pours in to regenerate and heal the broken, bleeding parts of the heart so that it can go on? I know that my heart didn't start scabbing over until I went up north and found... love. Pure love, in the arms of a sister/mentor/friend, and in the warm circle of an honest, human, humble family. Things I had never experienced before. No, not even with C. We loved each other, true enough, and passionately. I would gladly have spent my whole life by his side, even then. But I was broken, so broken... even he, my life vest, couldn't reach the broken parts of me that needed healing. It had to be someone else, years later, when I was ready to face the truth of my brokenness.

Maybe that's why I can still smile. Because I've faced down my brokenness and I know that I cannot be conquered. All of the loss, all of the suffering, all of the agony... and I'm still here. Weeping, smiling, laid out on the couch like a corpse at a wake, but I'm here.

I guess you can cry and smile at the same time.

In just an hour and a half I begin my first bout of testing for the cause of these twitchies.

I'm a little nervous, I must confess, as C shared with me that the procedure is, well, painful. His mom went through it. How painful it is exactly, he couldn't say, because he's not the one that went through it, and he claims that it's possible that his mom was being a pansy. Problem is... I'm a pansy, too! lol

I figured it might be best not to take pain killers before the test, so that the readings will be accurate, but I was hurting enough that I needed to. The thing with the pain meds is that they don't get rid of the pain, which is highly annoying. They just take it down to (mostly) bearable levels, if I'm lucky. But my stomach hurts a lot with all of this acetaminophen I've been ingesting. I suppose it's a worthwhile tradeoff. Sorta.

Also...

I love the community humor that chronic illness patients have developed. I mean, really... if you can't laugh at this stuff, you'll end up crying about it. And I hate to be droning on about my pain and symptoms all of the time, but... you talk about what's familiar and constant, and this is my life now. C and I were joking about who was going to die first last night. He says that although women generally live longer, with all this stuff wrong with me I've probably lost about 5 years, so that puts us on even footing. He actually thinks he'll come out ahead by a year or two. Could be. I'd rather die first, so I don't have to fight through the grief of losing my mate.

I asked him yesterday about suicide, my suicide. He said that, if I succeeded he'd be very upset, and probably a little angry with me. If I didn't succeed, he'd be very upset and he'd have me committed so that I couldn't hurt myself again. I was feigning offense that he would lock me away and I wouldn't see him anymore, but he assured me that he'd come visit. He also told me that killing myself, or trying, would never ever be doing him a favor. It would never be a good thing for him. I smiled at the assurance that he values my presence in his life, and I assured him that although the thought comes up in moments of desperation, it's never a serious option for me. It's not.

In the depths of my emotional and mental agony and despair, I longed for rest, for a respite from the hurricane of dark forces that ripped through my soul. Now, in the grip of relentless pain, I long for rest and a respite from the endless grinding and battering of burning, choking torment. It's torture, but there is no inquisitioner and no answer that I could give to end the agony.

Despite all that, though... despite the darkness that still rises from time to time to swallow me whole... despite the flames of chronic illness that lap at my naked, defenseless body... there is a solid, shining light that forms a bridge above the darkness, above the flames... and I can crawl to safety. And if I don't have the strength to crawl, at least I can lie on its solid surface and know that the golden pathway remains and will remain. The bridge of light is the meaning and satisfaction that I have found in my life. It is made up of my husband, my work with the Healing Journey, my friends and support system, the simple pleasures of food and tea and good books, the security of my place within my family, and the warm glow of unconditional acceptance from those who have come to love me. It is a bridge that saves me, day after day... a platform to rest upon as I drag myself from the cold burning depths of despair and frustration.

As I contemplate this odd mix of pain and darkness and light and love that is my life, I find myself profoundly grateful and humbled. I have never before in my life had a hope like this to cling to, to save me... and I cherish it. The darkness before was always so chaotic, and I could see no respite but a rock or two to cling to in the midst of the storms. Never before have I had a way out.

I know the pain isn't going anywhere. When I first started getting sick, and for many months afterward, I held on to the hope that this was a passing thing... that it would peak and then recede. I know now, and have accepted, that the pain isn't going anywhere. This is my life now. I fight to diminish it, to overcome it, and to find treatments for what is wrong with me but... this is my future. I don't expect anything else. While that may be considered glum and defeatist by some, I see it as freeing. No longer expending my energy on false hopes, I can focus on walking my shining bridge and beating back the flames that threaten to consume me.

It's an exhausting battle. I won't lie. The darkness still wraps tendrils around me and whispers dark doubts in my mind. But I have something to hang on to now... something that will always pull me back out. And that's why suicide is never really an option.

So. The weekend.

The morning that I was supposed to leave, I got a call from the car rental company about half an hour before R and I would go pick up the car. Apparently they were all rented out and had no cars available. I called R and told him what happened, and he showed up on my doorstep to pick me up and go see what we could scare up. Thus began a two hour hunt for a rental vehicle. Apparently there really aren't that many rental cars in Y, and the ones that we could find, well... we kept hitting snags left and right. For one reason or another, two places weren't able to rent to him, which would have saved us, oh, an hour and a half, but... it was a fun/interesting time of riding around with my new father in law and getting to know him a little better. It's not like we talked about anything deep, but it was just... enjoyable. I'll freely admit that I've been intimidated by him in the past, not because he's scary but because he's so... robotic. (Wonder where C gets it from? LOL) I am naturally pretty good at making friends, but in the past he just didn't really engage, so it was unsettling for me. Now that he and C's mom are divorced, though, he's actually happy, and that makes all the difference in the world. So despite the frustration of delays, it was a rather enjoyable time.

I finally got on the road during the heat of the day, which made me SUPER grateful that I wasn't in good ol' Shenadoah, because she's already running hot. I ended up with a Mazda 5, which was sweeeeeet! I've never driven that nice of a car. *sigh* It makes me want one of those new-fangled fancy new cars. The drive itself was uneventful. I stopped at a rest area with nice grass and trees to eat my lunch of watermelon, and I needed to stretch out my aching limbs so I ended up doing some yoga right there on the grass. Funny thing was, I didn't even care if anyone saw me! I used to be so self-conscious about so many things, but I find that as I gain confidence within myself and just do what I need to do, I worry less about what others will think. This is a gift that chronic illnesses and healing from abuse have given me-- learning how to do what is needed for me and not worrying about others unduly. I need to follow my own healing journey in my own time. Of course, there should always be a basic respect for those around you. I'm not advocating narcissism, here! Just a healthy sense of boundaries and self-confidence.

Upon arriving at the hotel, I brought my bags up to the deserted room (C and the girls were at a pre-service for D that I missed because of the timing of my trip, thanks to the car snafu) and proceeded to crash for three hours. Apparently driving wears me out more than it used to. I'm not surprised. I doubt I'd be able to pull off the 24 hours straight trip to Id anymore. When I woke up from my nap, I read a book (A Game of Thrones!) until C and the girls trickled in. They were exhausted, both from their long trip down and from the emotions of the service. We all got ready for bed while chatting among ourselves, and let me tell you, it was so good to be around them again! It was easy to fall back into the routines and rhythms of getting ready together.

That night, however, was a loooooong one. I could not sleep. I dozed fitfully now and then, but sleep was not forthcoming. Early in the morning I took a hot soak in the hotel's deep tub, which relaxed me enough to finally sleep for an hour before everyone was up and getting ready for the day. Surprisingly, I made it through the whole day and into the afternoon before getting dizzy and lightheaded from fatigue, at which point I napped in the church sanctuary until it was time to leave.

I'll be honest and admit (again) that I've felt pretty isolated during this whole process of grieving D. It seems that not many people know or understand that the S's thought/think of me as part of the family, so I'm just that girl that lived with them for a while. Even the P's, who know me and visited the S's multiple times while I was living there, completely left me out of the list of grieving family members in their tribute, opting instead to include the girls' boyfriend and fiance. Um, hello? I've been a part of the family for just as long or longer than both of those guys! Aaaaaaanyway... nope, no bitterness here! lol So in addition to being ignored or marginalized, there is no one down here that even knows D. BJ met him once, in passing, as did my grandparents, but that's it. J knows them better, but she's all the way across the country (well, halfway right now, anyway), so I've pretty much been left to mourn alone. C has been fantastic about comforting me and listening to my stories of D and the S's, but again... he doesn't know D. It's not the same. He talked to him for a few moments on Skype once.

The man who performed the service, though, made it a point to include me. It may not have seemed like much to him, but it is something that will stand out in my mind and which I will always be grateful for. When we introduced ourselves, he said, "Oh, I know who you are. I saw you in the S's pictures." Then he asked if I'd like to give a tribute during the family time, which of course I jumped at. I just really appreciated the inclusion. In addition to that, I had let C know how important it was to me to sit with her and the girls during the service itself, and that was accommodated, which I appreciated an unspeakable amount. K and I cried together during much of the setting up hour, and I cried on J's shoulder several times throughout the service.

As much as I hurt for me and the girls, though, it was C's loss and pain that struck me the most forcefully by the end of the service. Now that I have C, I can't fathom losing him. The pain would be almost unbearable. Yet here is a woman who shared 30 years with the love of her life, and now he's gone and she's alone. The loneliness... would be unspeakable.

It got me thinking about life, and love... and whether it's all really worth it, you know? Because really, when you love someone, you are opening yourself up to the inevitability of loss. People die, and unless you and your spouse both die at the same moment then one of you will have to face the incredible pain that comes with that loss. Is it worth it? I was thinking about that, and wondering... but then I think about C and D, and how much I learned by watching their love lived out in their lives and in their family life, and I realize that it's greater than just two people in love. It touches and affects the people and community around those two in love. It is because of C and D that I really felt okay in moving forward with marriage, having the assurance that yes, a healthy marriage and family is actually a possibility and not a wild goose chase. And even when one of those two is gone, or even both of them, their love has left a legacy and a mark on the world around them that is worth the inevitability of pain and loss.

I also thought of C, my C, and when I thought about him I concluded that whatever time I have to know and love him is worth the pain and loneliness that will come when he's gone. Maybe it makes it even a little sweeter, knowing that there is a shadow in our future that nothing can prevent. What I took from my conversations with C about her loss and loneliness, though, is that it was also worth it for her to have known and loved D, even though he's gone now.

Love is a special thing. I'm glad that I have so much of it in my life. I am truly grateful for the abundance in my life, as I tell myself frequently... and I find it fitting that even after passing away, D is still influencing people in a positive manner. His life was such that it cannot be silenced, even in death. I only hope that I can live that well. It would be an apt tribute to a gentle giant of a man.

So I was thinking this morning as I drifted off into blissful nap time next to the hubby... I've decided that I'm done.

I'm done with qualifying everything under the sun.

As I'm going through a day or an experience, I find myself constantly, obsessively ranking, sorting, and qualifying. "This is a good day." "This is a bad day." "This day is better than yesterday." "This experience is worse than last time." "My pain is at ____ level. Compared to earlier, I'm doing better/worse."

It's like I have this insatiable need to be able to line up my moments and days and experiences in neat, orderly categories of good, better, and best. I have to know exactly where I stand... but that has caused me so much grief. Instead of truly appreciating and valuing the moments of my living, I've been busy calculating their worth and my appropriate response.

So you know what? I'm done. I'm done qualifying my days, my pain, my self as "good" or "bad".

It's something we all do.

"How is your day? How are you?"

"Good. Fine. Bad. Boring."

How about, instead of worrying about having good days vs. bad days, I simply be grateful to have a Day?

I want to just let what is... be. Just let it be. Accept where things are at, where I'm at, and be okay. No more labels. No more fitfully dragging myself through hoops to transform a "bad" day into a "good" day. What happens happens, and the rest gets left for later. And that's just what is.

Whether I am in pain or dancing ballet in the living room; whether I feel dreadfully ill or have not a hint of a tummy ache; whether I am battling depression or walking on sunshine... today is a Day, and I am grateful for it.

My friend that died was only 19. We grew up together in our small church, so even though I didn't get to know him well personally as we got older, his loss is a hard blow. He died of a single gunshot wound in the wee hours of Monday morning, and his parents are devastated.

I texted BJ yesterday, wondering when the funeral/memorial service would be. She told me what she knew, then mentioned that there was a grief counseling session for the youth of the church going on right then. Although I was grieving more for D than M at that point, I hopped in my car and beelined it over there. It was good, and I'm glad I went. We shared stories and memories of M for a good hour before loading ourselves in cars and visiting his parents to share our good memories. They were encouraged by the sharing, but I could see how torn up they were. It must be hard, to have memories of their son constantly surrounding them... even with D, I'm so far removed from the situation that my grieving comes in spurts. If I were back home with the S's, the agony of my heart would be unceasing.

The language that I'm hearing over and over again is, no surprise, that of the hope of seeing these two again. SDA's believe in the resurrection of the righteous at the second coming of Jesus, that death is but a "dreamless sleep" until then, and that the righteous will spend all eternity in heaven. I was raised hearing and reading and believing this version of things, but as I sat in that room with all the other teary-eyed young people and adults, I realized, much as I did when SOULS came last year, that I don't believe that anymore.

When C came home, I turned to him and said, "I think I'm an atheist." He replied, "...Congratulations?"

I should make it clear that C has never pressured me in any way to leave my beliefs or my church and adopt his viewpoint. He's listened to what I have to say, sat through my explanations of Bible passages and church doctrine, and even listened attentively as I read him Case for a Creator on the trip to and from the Renaissance Festival. He has not hesitated to share his side of things, of course, but his point of view is that I can believe whatever I want, but the important thing is that I believe it for myself and because I have thought it out myself. He doesn't want me to believe and follow something just because other people are influencing me to do so (which includes being afraid of disappointing people by adopting a different viewpoint). Have his beliefs influenced me? Absolutely yes, but that's because as I've begun to question and think for myself these past few years, my church's version of things made less and less sense. God made less and less sense. I began to cobble together my own philosophy, based on my observations of the world around me, and then when I was exposed to C's point of view, well... the two were very similar.

I'm not set in any particular belief system at this point. I'm still... in flux, I guess you could say. I'm not an atheist in reality, for I still believe in the existence of God, or a higher power, or whatever, but... although I believe in God, I don't believe in God. Do you see the distinction?

Honestly? I've found that I'm much happier, balanced, and accepting now that I've left Christianity. The whole "atheists are immoral heathens" thing is so not true. Atheists are some of the best people that I know. I know some really good Christians, too, but I think it has more to do with the person than the belief system. Don't get me wrong-- Christianity has a great philosophy, and if people would live life the way that Jesus espoused the world would be a heck of a lot better place. And that's what I'm trying to do-- live the life that Jesus advocated... except without the God part.

I've heard that without God you can't love other people, that there's no source of goodness without him.  Since I no longer believe that I'm an unworthy person who needs saving from myself, I'm free to see the goodness and love that I have inside of me. It comes from me, from a decision to love the people around me, and so many other people have made that decision independent of any kind of divine mandate or indwelling. Atheists, the supposedly heartless immorals, have done a damn lot of good in the world for no reason other than that they saw the suffering and neediness of their fellow human beings and wanted to relieve it.

I've also heard that being an atheist diminishes the sanctity of life, makes it just some happenstance thing that has no consequence or bearing. While I suppose that's true, in a way (for they don't believe that they are the metaphorical center of the universe as Christians do), I think it brings as great or greater a reverence for life as the belief of creation by a personal deity. Consider these two quotes:

“Every atom in your body came from a star that exploded. And, the atoms in your left hand probably came from a different star than your right hand. It really is the most poetic thing I know about physics: You are all stardust. You couldn’t be here if stars hadn’t exploded, because the elements - the carbon, nitrogen, oxygen, iron, all the things that matter for evolution and for life - weren’t created at the beginning of time. They were created in the nuclear furnaces of stars, and the only way for them to get into your body is if those stars were kind enough to explode. So, forget Jesus. The stars died so that you could be here today.” ― Lawrence M. Krauss

“We are going to die, and that makes us the lucky ones. Most people are never going to die because they are never going to be born. The potential people who could have been here in my place but who will in fact never see the light of day outnumber the sand grains of Arabia. Certainly those unborn ghosts include greater poets than Keats, scientists greater than Newton. We know this because the set of possible people allowed by our DNA so massively exceeds the set of actual people. In the teeth of these stupefying odds it is you and I, in our ordinariness, that are here.We privileged few, who won the lottery of birth against all odds, how dare we whine at our inevitable return to that prior state from which the vast majority have never stirred?” ― Richard Dawkins

The thing that really bothered me, the thing that really disturbed my previous lines of thinking, was a quote from Epicurus that I stumbled across that put a voice to the quailing doubts and angry questions I have about God. I began vacillating and questioning while I lived in ID, but there was too much at stake there for me to give full expression to most of my doubts. I broke out of one of the church's doctrines while there, and received a mighty backlash from it. That taught me not to rock the boat. But once I moved away, once the reputation of a wonderful family didn't rest upon my actions, I was free to pursue a path that made sense to me, one that resonated with both my being and my mind. I didn't come across this quote until that time, and it's probably a good thing, because if I had found it while I was still up north... I think all hell would have broken loose. It would have put me in quite the hard place emotionally and mentally, I can assure you.

"Is God willing to prevent evil, but not able? Then he is not omnipotent. Is he able, but not willing? Then he is malevolent. Is he both able and willing? Then whence cometh evil? Is he neither able nor willing? Then why call him God?"  - Epicurus [341–270 B.C.]

I guess I'll end with that. It sums it up pretty well for me.

I know that at the memorial on Friday (and whenever D's memorial is) I'll be hearing a lot about the Second Coming, and that's fine. To me, all this talk about seeing them again and Satan out there working hard, etc. simply sounds like people trying to make sense of the bad stuff that happens in the world, and clinging to a comforting thought because they cannot face the finality of loss. But I know that they really, really believe it, and it brings them comfort and hope, so... I'm not going to say a word. Not a peep from me.

To be brutally honest, though? I do miss having that comfort... the thought of seeing the ones I love again. I just don't want to truly say goodbye.

I've been feeling better since Wednesday. Stronger. More able to handle the pain, and even to push myself and feel my muscles burn with exertion. It's been a while since I dared to do anything like that. It would have sent me straight to bed in spasms of muscle agony and the groaning torment of severe "fibro flu". Who wants that? Not I.

I did a lot (to me) of packing and moving this weekend. I picked up boxes and carried them out to my car and into the new house. I scrubbed shelves and mopped floors. I wiped down bathtubs and swept the whole house. I hung shower curtains and ate sushi cross-legged on the bare tile floor.

It was a good weekend. I enjoyed feeling stronger than I have in... who can remember how long? When your days are filled with pain and sickness, they tend to blur together. You forget the last time you had a good day, unless it was extraordinarily memorable. I remember my wedding day, but that was not a good day, health wise. It was actually a very bad day, but I enjoyed it nonetheless.

So that makes me think that the acupuncture is actually, finally helping. I feel like I've been gradually slipping down a flight of stairs, and each step is a lower level of functioning than the last. But, at last, I feel like I've taken a step back up that flight of stairs.

Granted, the fatigue was a bit of a bitch today, but I fought it. I did good, but today, combined with the weekend, may have been a bit much. I think I got over-excited about feeling better, 'cause now I'm feeling pretty gross. Not much in the way of pain today, actually. Surprisingly. I don't really know what to do with myself when I'm not actively in the throes of affliction, so I was at a bit of a loss...

While I was waiting in the bank to change my name last week, I picked up a National Parks magazine and read an interesting article about a woman and her husband who started as seasonal Park workers in Glacier. The article was about how they worked Denali for a season or two as seasonal employees, but then they chose to stay there year-round, and how that experience has changed them for the better. It was a good, interesting story. I'd like to see if I can find it online somewhere... Oh! Found it!

Here. Read this. It's great.

Anyway, it really struck a chord with me, as ever since I started really talking to D I've had this intense desire to visit Alaska... maybe even stay for a while. I can't now, 'cause of the dumb fibro (cold affects me very, very negatively in that regard)... and that is what got me thinking, and grieving.

I'm grieving for the Life That Could Have Been.

If I were not sick, what kind of life would I have led?

Realistically, my health has been compromised almost my whole life. I've had fibromyalgia since I was 9, at least, and the fatigue and other things that accompany it really impacted me growing up. I never had much physical stamina, not to mention the exercise induced asthma that I inherited from my biological dad. (Thanks, T!) Maybe I had the thyroid and adrenal issues way back then, too. I don't know. All I know is that the older I've gotten, the sicker I've gotten.

But if I were healthy, what kind of life would I have chosen?

I used to love to roam the desert and go hiking as a kid. On Sabbath afternoons I'd be over at the D's house, and after lunch we'd decide to go for a hike in the desert. I'd borrow some of their son's clothes and shoes, and we'd be off on an adventure. J and I would leave the adults behind and skip up the mountains like little goats-- he was always ahead of me, because of the stamina/asthma thing, but I trucked right along. When I lived in ID, I had a fierce longing to work for the Forest Service, and I was SO jealous when K got the opportunity.

If I had not been sick, that is the kind of life I would have chosen for myself. I would have joined up with the Forest Service, or the National Parks, clearing trails or patrolling the backwoods or whatever was necessary. I'd cross-country ski through the woods in winter, and I'd hike the Grand Canyon from rim to rim. I'd camp out at Denali, and I'd hike McKinley at least once. I'd sleep under the stars at the Arches, and I'd walk the Appalachian Trail, a pack on my back and a dog at my side.

Would I have a husband by my side as well? I don't know. I do know that, were I living the life that my soul dreams of, I would have married someone very different from C, someone more like B or D, or even W, my sister's fiance.

But the thing is... I was born into this broken body, a body that limits me in so many ways... and I will never get to live that life. I had a taste of it, a beautiful, refreshing taste when I lived up north. But now... now I celebrate walking around the block. My body does not do the things that I desperately, sincerely wish that it would and could. And I must accept the fact that it may never do those things. Truly, it will never do all the things that I wish it could, and that's okay. I know that I am more "frail" than some of the rugged individuals out there (I'm looking at you, Miss R, and your man J!), but I still want to work up to doing what I can.

I want to go backpacking again. I want to go camping again.

I want to do those things without fear of falling wretchedly, desperately ill as a consequence of enjoying myself, of pushing myself. It's ironic that physical exertion can make me so, so sick... because getting exercise is supposed to be so super healthy for you! I feel like a leper sometimes. A misunderstood leper.

And so I grieve. I grieve the Life That Could Have Been, the life that would have been, had I been born into a healthy body.

Anyone reading this with a body that follows your commands and obeys your wishes without committing mutiny... I hope that you walk away from this grateful. I mean it. How often do we think about the little things that our body does for us, without even thinking? Washing the dishes. Bending down to pick toys up off of the floor. Rising from a seated position. Chewing food.

These are things that, some days, are difficult or nigh impossible for me to do. Some of my chronic illness friends find these things absolutely impossible on a regular basis. I'm better off than a lot of them, and it's humbling.

If you have health, don't take it for granted. I certainly don't, not anymore. And yes, while I am grieving, I am also celebrating. I am celebrating the health that I have, whether I feel awful or not. I have safe food to eat, I have medicines to take, I have health treatments that are paid for and not putting me in the poor house or driving me to extreme measures to pay for. I have a supportive network of friends and family that both believe me and believe in me. I have a wonderful husband who takes care of me in a zillion little ways, and who wanted to marry me despite the trip down the stairs I've been taking. He has wanted to marry me for years and years... and his love did not dim a whit while I was off doing what I thought was best for both of us. How many people can say that?

Sure, it's rocky. Sure, I'm in pain. Sure, I'm fighting hard against a body that is literally trying to attack and kill itself. But man... I have so much to celebrate, so much to be incredibly grateful for. And it's those tough things that make me appreciate the nice things so. much. For example... I have a new house! And I was able to clean it!! All by myself!!!

I love my life. So while I do grieve the Life That Could Have Been, I don't know if I could or would ever give up the Life That Is. It's just too rich and too wonderful, and I love all the pieces of it... even the hard ones.