Excuses and Excusals

It's a lovely Sunday afternoon. My husband and I just watched one of the classic romances of all times: The Princess Bride. It's truly one of my favorite movies, but in the light of all the information and discussion and liberation of sexual misdeeds over the last few years, I couldn't help but notice how poorly Buttercup gets treated; she's really more of an object at times than a real person. I still love it, but it is interesting how our modern understandings change our perceptions of beloved tales. Of course, before sitting down to watch, I read a story on The Guardian about more sexual allegations and assaults. This time in the Jehovah's Witness church.

I know, Goat. SMDH right there with ya.

In this story, it's not unlike others that have broken regarding sexual abuse of minors in the confines and secrecy of a church. Children and teens taken advantage of, their innocence taken away, and then shame and punishment for them, not the offender. Stories of young teens having before marriage sex and having to appear before a panel of all men, Elders, and recounting their experience.Was it once only? Where was it? Did you enjoy it? So much for privacy. For the abused, it's somewhat similar, but they make it one major degree worse: did anyone else witness the act? How fucked up is that? It must be seen or heard by another party because God forbid they accept the word of the victim. They of course follow the lead of the Catholic Church and keep it all safe and quiet from police and others. Until now. The abused are emboldened by the courage of others and will not be silenced.

Time to wake up, people. 

The church-whatever one in question-likes to keep abuse quiet and keep the victims in shame.

Consider the scandal that rocked the internet: Andy Savage sobbing in front of his congregation and asking for their forgiveness. Not Jules Woodson's forgiveness mind you. Not the young woman he forced to give him a blowjob and not the young woman whose breasts he groped before he begged her to take the incident to the grave--to protect himself with no regard for her. She was a 17 year old who trusted him and he assaulted her. He used his position to gain access to her young flesh and he then used their church to not only escape justice, but to then receive the forgiveness of all in his congregation because he felt bad about it. I'm sure he did, but I bet Jules felt worse. He likely felt bad just because he got caught and couldn't see another way out except through the veil of faith and belief and victim blaming that exists in the Evangelical realm. Savage won't lose a damned thing. He gets to keep his name, his ministry, and his freedom because he's repented and received forgiveness through the church. He has God's grace, so no need to discuss it further. Time to move on.

Oh yes, JenLaw. That's the way it works.

I'm sure I need not remind anyone of the Catholic Church's scandal. It's likely the most well-known. This wide-spread cover up has some things in common with the Savage assault: forgiveness and cover-up through the church. You see, when a report came forward, the higher up priests would simply move the offending priest somewhere else. The offender of course received forgiveness through the sanctity of the confessional. The victims of course know this and must accept that God has forgiven the priest who raped them. They will know they will never receive legal justice because the priest has repented, God has forgiven, and the young victim need only repent and pray for guidance. Trust the Church and your faith will set you free. Never mind that it was a church representative who assaulted you. Don't concern yourself that it was a church representative who let the sex offender go free. Ignore the warning in your gut that tells you the predator will just offend again on some other trusting, young, impressionable follower.

That's right, Sloth. You called it faster than any church ever.

It's difficult for me to see any church as "of God" when stories like these keep coming to light. A friend of mine who was raised Evangelical told me once that churches like hers are now considered forms of emotional abuse. I wasn't surprised as I had also read about the clinical view of church indoctrination. I was surprised to hear it from her as she had been so devout growing up. My family is still quite devout in the Catholic Church. My mom has grown more so over the years. She'll "be Catholic til [she] die[s]". Her words. Not mine. I have a hard time sitting with the family at gatherings and listening to them pray before meals or watch them take our niece and nephew to mass. It turns my stomach that they continue to go to mass; to accept the line about repentance and how the action of one person (A lot of men actually. Too many to count really.) should not sully the faithful; to provide tithes that fuel the systemic secrecy of sexual misconduct. They should pray for the offenders' souls and rest comfortable in the loving arms of their church. God loves them.

Oh, Dorothy. Sometimes it's hard not to.

 I am both fascinated by world faiths and horrified. I am not so naive as to think there is any faith exempt from sexual assaults. Not even Pagans; although I'd like to think that the Pagans would not protect the predator. Humans are humans and there are perverts in any organization. But when the organization protects criminals who put the youngest and most vulnerable at risk, they become a tool of evil. If I believed in the Devil, I'd point at those holy men and women and call them servants of Satan. That is what they are when they cover up and shame the victims. They are Lucifer's minions when they forgive the beasts who hunt their children. Participating in an organization that knowingly and willfully allowed predators to not only go free from prosecution, but also allowed them to prey on more innocents is something I cannot understand. I don't want to honestly. But what should I expect from organizations that believe babies are sinful when born and must be cleansed through baptism? 

Suffer little children to come unto God, right? 

Are You Trying to Avoid Me?

During my second summer with the Creative Pulse grad program, a bunch of us went to lunch at a funky little bistro across from campus. I had been diagnosed with lupus about 5 years prior, and I had eliminated alfalfa sprouts from my diet. This was easy as I had never been big on alfalfa anyway. However, there was a sandwich I really wanted. Unfortunately it had alfalfa sprouts, but I really wanted that sandwich. I rationalized that it's less than a handful, so what's the big deal? Turns out, it wasn't a big deal. But one of my mates said, "Well, if it triggers lupus flares, why are you eating it?" I didn't appreciate the judgmental look and insinuation that I wasn't taking care of myself. but I said, "Because I want the sandwich, and I don't know if alfalfa will actually affect me at all." This was true, but in retrospect, I rather resent having to justify my dietary choices to someone I barely knew. Anyone who has had to navigate the chronic condition waters knows this feeling because there are droves of things to avoid in life once you get that diagnosis.

Don't you get judgy on me, too Goat.

I do avoid things that I do know trigger me. One summer we had about 25 pounds of tomatoes; not kidding. We ate tomato soup a lot. We had tuna salad on tomatoes. We had tomato juice, sauce, and salads. Tomato everywhere. Of course, being a nightshade it did eventually create some inflammation. people with autoimmune disorders are often warned about them. I had to eat pounds of them daily for any kind of response. Consequently, I should avoid eating pounds of tomatoes. 

Looks fun, right?

I avoid the sun. It gives me lesions. I have always burned mind you, but since the lupus, I am very cautious of the sun especially when I'm feeling slightly lupie. Usually, oodles of oxide sunblock keeps things in check, but sometimes all the UV clothing and big hats aren't enough. The spots, the lesions, the rashes come on me. So I avoid the sun most of the time. 

Creepy or divinely funky?

I avoid beans, apples, pears, and wheat because they trigger my IBS. It's terribly unpleasant to have intense stomach cramps that wake you up in the middle of the night because you've eaten something tasty like an apple or less than a 1/2 cup of black beans in a burrito. The urgent diarrhea is no treat either at 130am. As a result, I avoid those foods as much as possible. 

They are ever so tempting.

I avoid sulfa drugs, which makes matters tough because I also have a reaction to penicillin. The penicillin gives me lesions in my mouth, but the sulfa brings on full-scale, stay in bed, everything hurts so don't touch me flares. Both are on my contraindicated meds list at the doctors' offices.

 Pick one. I bet it's to be avoided.

I avoid most rose` wines and some red wines because some of them give me an instant migraine. Not all, so I identify the ones that do and stay away from them. Unfortunately, sometimes even the ones I think are ok, aren't. I can get away with one glass, but not a second; sometimes I can't even get through one glass. Sangria though tends to be an absolute no-no as it usually has copious amounts sugar in it. Obviously, I avoid a lot of wine.

No can do, Karen.

It gets tiresome though. It's fucking annoying if I am to be completely honest. You see, sometimes the foods you are to avoid for one condition are ones that are recommended for others. Take beans for example. They are high in the FODMAPS. which means all the IBS lists say stay away. But then you doctor (the GP not GI) tells you to get more fiber like in beans or whole wheat. Well beans are out thanks. The whole wheat though is carb heavy and while it may be ok for some with IBS, it makes my tummy just as angry as others. I still love a good pastrami on rye, but I know it's going to make me miserable, so I avoid the wheat, multigrain or whole wheat, or sourdough even. Although sourdough and rye aren't usually quite as painful that I've noticed anyway. I still avoid them as a general rule though.

Sure, they look innocent when they're sleeping, but don't be fooled.

Med woes also complicate the avoidance issue. I take Lamictal for migraines. This med is actually for seizures, but I take it and it messes with my balance and sleep. I already have balance issues thanks to migraines, but now it's just that much more fun. The insomnia and sleep disturbance of course make it tough to sleep all night (we won't even talk about the horrid nightmares). A steady sleep schedule is important for migraines and autoimmune disorders. I do my best, but I can't avoid the Lamictal according to my doctor. There aren't too many med options left on the migraine list.

Seriously. Pick one.

I eat a low carb diet to reduce the inflammation in my body. It also helps with the weight maintenance mind you, but I did it primarily to manage the lupus et al. Now this way of eating is great because it eliminates the wheat and sugar etc. However, it also means you have to eat a lot of vegetable. Sounds great, right? Until the broccoli, cauliflower, and Brussels sprouts you love turn on you. When I did the elimination IBS diet, these three vegetable that I adore came out on the iffy side of life. I had mashed cauliflower and steamed broccoli on the same plate the other night and paid for it. I need to be more careful with them. One at a time, not two and definitely not three. 

Only once in a while, Dana.

Another thing I have to avoid is alcohol. On my low carb  diet, I'm not supposed to have a lot of beer, but one now and then is ok. Cider is out because of IBS and apples, but IBS allows for one or two beers. Wine is ok on the IBS and low carbs too; one or two now and then mind you. But as I stated earlier, the migraine makes that one tougher. However, alcohol is out-out now because my rheumy upped my blood pressure med, which is also a migraine deterrent and also a Raynaud's treatment. That's enough interactions with alcohol especially since this one can become either ineffective or it will reduce the workings of the heart. Kinda want to keep that one working for me, thanks. So I'm on the wagon completely for a while to see how this med does. I figure after a few months off the alcohol, I can then talk to my GP about it and get his thoughts. By then though, I might not want alcohol at all.

Or this could happen.

Just kidding.

Currently, I am avoiding a sleep study. My rheumy thought it'd be worthwhile since I am fatigued and the options for lupus treatment are mostly for the active inflammation, not the fatigue. Benlysta was supposed to treat the fatigue, but that didn't go well. Of course, the fact that I have the meds that mess with my sleep couldn't possibly be a factor in the fatigue, ya know. So, I looked for ideas to add to my already long list of good night's sleep strategies. I have blackout curtains. I go to bed at the same time each night. I have an eye mask if I feel I need it. My room isn't that hot; we have the heat set to go lower overnight making the room is fairly cool. I never drank alcohol or ate spicy food or caffeine before bed. But I have started to sleep in socks. Apparently it's a thing to help sleep. I also do 4-7-8 breathing if my mind won't shut off. I've stopped looking at my phone before bed. I don't do anything but sleep in the bed now; well, except for nookie. But that doesn't count. I really don't think sleep apnea is my issue and sleep studies sound horrendous. I figure if I work on my weight and stick to my current sleep strategy, I should be able to avoid a sleep study. Let's be honest, have you known anyone to go in for a sleep study who didn't come out needing one of those damn machines? Me either. I would even take up didgeridoo before a sleep study. Yes, playing the didgeridoo is a thing for sleep apnea. 

Note the lack of snoring. This is the goal.

But one thing I can't stand is the judgy-ness of others. If I dare to eat a pear, I will. If I want a glass of red wine with an anniversary meal, I will. I don't need someone else looking down on me for not doing enough to manage my conditions. I don't need someone lumping me in with the gluten-free non-Celiac crowd fadsters because I have a flour taco. I don't need anyone else's judgment because I do enough on my own, thank you. Don't step on my self-flagellation. I got it covered.

Et Tu`, Moose? 

Fake, Fraud, and Phony

I've read stories about celebrities who have something called impostor syndrome. Essentially, they've achieved success and can't believe it. They feel as though someone will catch on and they indeed will be called out as impostors. Me too, just not like that. You see, I spend almost every day feeling like an impostor.

Oh, Goat! How do you always keep your footing?

I fix a hoax around my life. I  feign interest at times. I falsify my wellness often. I simulate life I guess. Sometimes I just step back and go, "I wonder if they know that I totally put-on a front." It feels like a pseudo-life sometimes.

 Kinda like this guy's pseudo-eyebrows. 

I feel like I fake it at work. I really do enjoy my students and my course content mind you. I kinda fake the rest though. I fake that I was called to this profession. Some know from an early age that they want to do this for a living; I did not. I'm still not entirely sure I made the right decision. I mean, I think I'm good at this. I think some students enjoy what we accomplish together. I think I can make a difference with some of the students and policies, but I also feel like I will never be that teacher.  I'm coming up on 20 years at this. I know many teachers who did 30-40 years. That won't be me. I can't. I'm a fake.

Gee, thanks for pointing that out. I wasn't already acutely aware.

When it comes to wellness, I'm a fraud. These past 2 years have been a constant struggle it seems. I had things managed, but then they all went to hell. My lupus and Sjogrens fell out of remission. My migraines went from episodic to constant. I live in a state of "What next?" The waiting for that other shoe to drop has been life lately. Trying to get a handle on all parts of this body that have dissolved into a shitstorm of conditions with conflicting solutions just makes me a bundle of nerves. I think my fraud is going to be found out. I't's starting to show with my absences; my walking downstairs; my memory. It's all slipping I'm a fraud.

Fraud: not just for guys in big jackets with questionable dance moves anymore.

Then there's the mounting anxiety and depression. I try to hide it, but some days I pry myself out of the flannel sheets and simply crave the nighttime when I can return. I feed the cats and bide my time until I can cuddle with them again because honestly, they don't judge and they always seem to know that I require their presence. It's remarkable how soothing a purring cat on your pillow can be. I try not to wallow too log in the ruminations of anxiety. I fear lingering too long in the recesses. My mental health is a farce. Behind that facade is a phony just trying to ignore the reality of her darkening headspace. I'm a phony.

It's not like I'm trying to deny it here.

In The Matrix, there's a point where Carrie-Anne Moss is trying to outrun the Agents in black.She dive rolls through a window and pulls both her handguns ready to shoot whatever comes through that window after her. Then she tells herself, "Get up, Trinity. Get up!" Keep fighting the Agents, Trinity.
I'm a fake.
I'm a fraud.
I'm a phony.
Does everyone feel this way?

Good job, Baby Moose. Keep getting up.

 

Lost Time

Outside the spring snow is piling up and I've found absolutely no reason to venture out into it. It looks gorgeous with its light, fluffy flakes and clinging coating on branches. Somehow as I admire its beauty, I am also baffled at how it has come to be mid afternoon on Sunday. The answer of course is simple: lost time.

Run all you want, Goat. You won't catch up to your lost time.

Anxiety eats your time like a puppy with a shoe. Vigorous, unrelenting gnawing of your minutes and hours. Soon, you're left with nothing but shreds of material that have most likely been piddled on and belong in the rubbish bin. Will I need this; will I be able to; will I even make it to that; will that weather front incapacitate me? While it is true everyone worries, not everyone loses as much time worrying  as someone with chronic condition anxiety.

Yeah, I already told Goat that doens't work.

Anxiety then strangles sleep in its rope of what ifs. Those with chronic illnesses know the importance of a regular and generous sleep cycle. We know this mostly because everyone and everything reminds us of it, which of course makes it that much simpler. Whatever time anxiety missed during the day, it makes up for at night. Add to that the medications can cause interrupted sleep or insomnia. Furthermore there is pain like spasms or migraines that jar you out of sleep ensuring that you lose as much time as possible so that you feel like positive shit when that alarm finally goes off. Before you know it, those 7-8 hours you were looking forward to have disappeared.

Wow. The pressure is not helping.

Between anxiety and lack of sleep, you're supposed to also socialize and somehow manage not to be a hermit. You hear of a play you want to see, a band at a pub you want to listen to, or a new restaurant you want to check out, but you worry about making plans because you might have to cancel. By the time you're supposed to leave the house, you're so wiped out from worry and lack of sleep that you can't possibly drag your sorry ass out. Once again, your bitchy chronic maladies have leeched more time from you.

 Yup. They have time for a dance number, but no time for me.

Because you have a host of crotchety health concerns running amok in your body, you spend a lot of time doing research. You have to learn what information is reliable and which information sources are trash. You investigate a new med your doctor thinks you need; you check out the new condition that has been added to your laundry list of crapola; you dedicate time and energy to figuring out what you need to do so you aren't destitute from your health woes. Even a big nerd who relishes research will be run down by the herd of wildebeest that is being an informed patient.

Well, I guess that's another way of looking at it.

Because you are so informed, sleep deprived, and anxious, your saving grace is planning for every possible outcome. You can't live in the present because you're always thinking about the future. The just in cases eat time you devote to your coping strategy. You plan your wardrobe for the week so if you wake up feeling worse than when you went to sleep, you at least have clothes ready for the day that match. You leave work each day with a to-do list and a back up plan for someone else to follow because you know you may have to stay home the next day. You plan menus well ahead of time because if you come home fatigued and have to answer "What's for dinner?" you may just murder someone. Slowly. In stages. Possibly with naps in between.

Plan. Eat. Sleep.

Illnesses also snitch time from your hobbies. You can't read because your brain fog won't let you comprehend the latest Dean Koontz novel. You can't make craft items because you can't handle the light thanks to your migraine. You can't go for a bike ride because you're dizzy and too clumsy to even walk from one room to another. You might as well strap in, ride that sofa, and stream some Netflix because that's all you can do.

This cat is more productive.

Speaking of hobbies, what happens to all that free time you used to have? You used to come home and do stuff. Not now though. Sometimes it is all you can do to get through your work day and when you finally cross your threshold, you crash. You stare as the fog creeps into your cranium. You were going to do some light cleaning so you aren't overwhelmed on the weekend. You were going to work in the yard to prepare for the change of season. You were going to put away those holiday decorations that you've ignored for months. But all you can do is sit your butt down and hope you don't drool. Before you know it, it's time to do it all over again.

Your whole house should be like this.

The answer to all of these concerns is of course to manage your health and wellness. Well, that also siphons your time. You wake up with a migraine for example, so you keep lights off, move more slowly, take your med and just sit with an ice pack and breathing exercises until Oh shit! 45 minutes has passed and you still haven't showered. Good bye morning; you've spent so much time managing your condition that you now must speed up and hope that your accelerated pace does not undo all the self-care you just invested in trying to mitigate the migraine.

Fuck that shit.

At some point, you're supposed to make time for your significant other. You're supposed to enjoy a bit of intimacy now and then. You're supposed to make time for each other, but unless you have a T.A.R.D.I.S., you may just not possess any time in which to make Marvin Gaye proud with your gettin' it on. You feel lousy. You look even worse in your robe and unwashed hair. You're so tired, you might just fall asleep. As the time ticks away, the guilt builds up. Before you know it, the fornication window closes. Sigh* There's always tomorrow, right?

Timey whimey, wibbly wobbly sex would be good.

Since you're too tired to do a damn thing and you're not able to sleep, you can always daydream. Of course, that's a wholly depressing venture since the likelihood of being able to fulfill some of those dreams is perfect nonsense. Despite all the self-care, research, and management, those dreams you've added to your bucket list get farther and farther away. What once was a reverie of pleasure, now just brings pain of knowledge. Knowledge that it's really just dreams and dreams aren't real.

And this is when you really have to fight . No matter what.

Regina Spektor's title song for "Orange is the New Black" refers to how "you've got time." Well, yes. you do, but it's not quality time when you've got a chronic illness or illnesses. You spend so much energy just trying to get through your days and nights that the stream of time pulls you down with its undertow. Hopefully, that swim eventually brings you back to dry land. And a massage. A massage would be a nice way to lose some time.

 

See? Moose agrees with me about the massage.