Thursday, February 25, 2016

Time to Move On

I've decided that the time has come to end this blog and move on to greener pastures. The main purpose of this blog, for me, was honestly to purge my infertility and autoimmune disease journey. I've done that, and now what's written here, for the most part, is from a part of my life that I want to leave in the past. I plan to leave this open at least for the foreseeable future for anyone who might benefit from reading it, but I'll no longer be updating here. Instead, you can come join me at my new blog - Aunt Coco's Loco Lounge. I may even move some of my funny posts from here to there. Who knows? Thanks to all of you who read and commented here. (So, you know, basically, thanks, Mom!) It's been real, it's been fun, it's been real fun. Over and out!

Sunday, October 18, 2015

On childhood fears, neuroses, and toilets: Conversations with my mother (complete with footnotes (that also have footnotes)!)

My younger niece is apparently getting toilet trained this weekend. I only know this because my mother told me when we were talking on the phone one evening earlier this week. I am weirdly passionate about the subject of toilet training. It's a remnant of my years of teaching preschool. I probably single-handedly toilet trained upwards of 20 children (their parents were rarely helpful), and I am probably the closest thing there is to a field expert. I have strong opinions about pull-ups (go ahead and use them if you want to keep spending your money on what essentially amounts to more expensive and less user-friendly diapers until your child is in kindergarten, and I will go ahead and judge you for it) and potty chairs (why the hell would you want your child to poop into something that you're going to have to dump out and wash like a chamber pot every time they go? And if you buy one that plays music and has a book nook or, worse, an iPad attachment, you are dead to me).

My mother and I started on the subject of potty chairs (in general agreement that they're stupid) and somehow this led us on a weird trip down memory lane.

Join me on our way down the rabbit hole:

Me: I mean seriously. Just buy one of the toilet seat covers and a step stool. It's less cleaning, it's less gross, and it's one less transition you have to make.

Mom: I couldn't agree more. I think some people think their kids will be scared of the big toilet or something.

Me: Oh, please. I mean, if you act like it's something to be scared of, they'll be scared. If you act like it's no big deal, they'll be fine. [thinky pause] Although, you know, I was scared of the toilet when I was little.

Mom: You were?

Me: Oh yeah. It didn't have to do with the size of it or using it, though. I mean, like, I wasn't afraid I was going to fall in. It was the sound it made when it was flushing that scared me.

Mom: Is that why you wet your pants all the time?

Me: It was probably part of it.* I also remember getting in trouble for just not flushing.

Mom: Huh. I have no memory of that.

Me: It wasn't as bad during the day, though, but at night I guess there was some kind of interaction with fear of the dark. I had rules. If I made it into my bed before the tank filled and the toilet stopped running, the toilet monster couldn't get me.

Mom: Is that why you always ran for your bed?

Me: Yep.

Mom: You had rules?

Me: Of course.

Mom: Hmm. You were kind of OCD, weren't you?

Me: Are you kidding? Why do you think I had to line up all my stuffed animals in the bed before I could settle in?**

Mom: Well, I remember that you had to have all of them, but I didn't remember that it was that detailed.

Me: In case it escaped your notice, I was kind of a neurotic kid.

Mom: Fair enough. I wish you'd told me about the toilet monster, though. I could have helped.

Me: [hysterical laughter] You couldn't have helped with that.

Mom: [offended] Sure I could have. I could have used monster repellant spray or something.

Me: That wouldn't have worked with me.

Mom: Of course it would. It works with all kids.

Me: Mom, I knew the bad guys in the closet weren't real, because I made them up, but they were still there.*** Once I made them up, they wouldn't go away. I already knew that I was being stupid and crazy.

Mom: You weren't stupid and crazy ---

Me: Okay, fine, I was irrational. But I knew it was irrational, even at the time. Even when I was 5, I knew how it would have sounded if I'd told you. So I wouldn't have believed you about the monster repellant, because I already knew the toilet monster wasn't actually real. That just didn't mean I didn't still have to be scared of it or follow the rules. Which I also made up.

Mom: Wow.

Me: I know. It's possible that I just thought about it all too much.

Mom: I'm not going to argue with that.****

Epilogue: I no longer fear the toilet monster and there are no bad guys in my closet anymore.***** As I have mentioned previously, ghosts from the cemetery down the street do occasionally visit, but I'm not scared of them.******

*Another part of it was probably the fact that I had chronic bladder infections when I was little, resulting in the formation of an early association that toilet=excruciating pain. And when I say chronic, I mean months-long courses of powerful antibiotics and consultations with pediatric urologists and kidney ultrasounds and cystoscopies. As far as I can remember, they never figured out what was causing them, but by the time I hit about fifth grade, they more or less stopped. Only to be replaced by even less fun medical problems.

**These weren't the only rules, for the record. There was a very specific bedtime routine that I adamantly insisted my parents stick to, including the order in which they hugged me, kissed me, tucked me in, told me they loved me, and recited the "don't let the bedbugs bite" rhyme.* I allowed no deviations, and any accidental ones were just cause for restarting the bedtime routine from the beginning. It's possible there was an element of manipulation to stay up longer mixed in with the neurosis. I admit nothing.

***This is totally true. I distinctly remember one day when I was maybe 3 or 4, while playing in my bedroom, looking at the closet door and thinking, "What if there were bad guys in there?" As soon as I thought it, they were there. I had manifested them. I never got more specific about who/what they were - I pictured them as vaguely human-shaped shadows, and possibly wearing noir-style fedoras and trench coats (don't ask, because I couldn't tell you) - for fear that whatever qualities I imagined would also manifest. I just knew that they were bad, and I could not make them good, no matter what I imagined. All I could do at that point was damage control. It is also true that I knew that they were not real, and simultaneously knew that they were. They both were and were not in the closet. They were basically Schrodinger's bad guys.**

****I kind of resent your implication there, Mom. Or, at least, I would if I didn't know that I'd inherited the "overthinking everything" trait from you. You know what? Never mind.***

*****The bad guys may still be in the closet at the house we lived in back then, though. If that's the case, I'm truly sorry for any children who had to live in that room after we moved out. Their creation was completely unintentional, I assure you.

******Except when I am. Which typically only happens when I am washing my face before I go to bed at night.**** I'm afraid that I'll look up from the sink to see a vengeful spirit behind me in the mirror. I've tried leaving the medicine cabinet open so I can't see the mirror when I look up, but it turns out that's worse, because just because I can't see the vengeful spirit, that doesn't mean it's not there.***** I once watched the last five minutes of Candyman immediately before getting ready for bed. That was a mistake.

*This wasn't the actual order of the bedtime routine. I don't remember the actual order. I'm not that neurotic.

**That, however, I did not know at the time. I mean, I was a smart kid, but I was still only in preschool.

***On the other hand, you have to admit there's an element of "pot calling the kettle black" then, don't you?

****Huh. Weird how it all keeps going back to bathrooms. I don't even want to analyze that. There are probably some things you're just better off not knowing.

*****Jesus. It's kind of amazing that I grew up to be as functional and mentally healthy as I am. I really deserve more credit for that.

Sunday, May 10, 2015

Reckless Hope

Last week, I went to a Derby party that one of my friends hosted. I made a cake to bring to the party, and while the recipe was not difficult, it was time-consuming. The batter was thick and heavy and had to be mixed by hand with a whisk rather than an electric mixer, and I made it at my parents' house, which meant that I could not sit down for the entirety of the process of making the cake and the glaze, because if I had, my parents' dog from hell would have eaten the ingredients. I also shaved my legs that day, for the first time of the summer. This meant that I was on my feet for essentially 4 solid hours, some of it spent contorting into impossible positions, which is something that would have exhausted me even before the arthritis.

By the time I got to the party, my feet and legs hurt every time I stood, and my arms and shoulders were sore from mixing the batter and having to hold the bowl out of the dog's reach while mixing it and pouring it into the pan. I spent much of the evening sitting in my friend's large, unfenced backyard, talking around the bonfire, and watching my friends' kids run around. When I went inside to watch the race, the living room was standing-room only, and my feet screamed in protest the entire time until I was able to sit again.

One of my friends has a toddler, a sweet little girl who will be 2 in a couple months. Since the yard was not fenced, and we had a fire going, she needed close supervision, and I was worn out just watching her parents chasing and corralling her.

The next morning, still sore and stiff, I had a bit of an existential crisis.

If that baby had been mine, there was no way I would have been able to supervise her effectively the night before.

So I wondered: is it already too late for me to have a baby? Is motherhood something I should just give up on?

These are not new questions to me, and when I cried over them for a little while that Sunday morning, it was not for the first time.

But then, a couple days later, I saw this:

Gilda Radner, of course, never had children. She struggled to get pregnant, had two miscarriages following fertility treatments, and then she died of ovarian cancer at the age of 42. And yet, she remained optimistic. When I pulled up the quote above, I found another from her autobiography, published just a couple years before her death: "I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity." These are not the words of someone who has thrown in the towel.

I have never been a gambler. My grandparents took me to a casino on my 21st birthday, and my grandpa loved to tell the story for years afterward of handing control of a slot machine he'd been playing over to me. He'd built up a balance of a couple hundred dollars, and he told me that I could continue playing, or I could cash out and keep the money. I didn't even have to think about it. I took the money and ran. If I had continued playing, I might have ended up with nothing - although, considering it wasn't my money to begin with, I wouldn't have been any worse off than when I started. At least by walking away, though, I ended up with a couple hundred dollars.

But if I'd continued playing, what if I'd hit the jackpot?

This is a pretty apt metaphor for how I live my life in general. I am, in general, a realist. I keep one foot on the ground at all times. I try to not ever get my hopes up, my prognosis is always guarded, and I'm only ever cautiously optimistic. It's something that I've always taken a little bit of pride in, to be honest. I wouldn't be caught unprepared if my hopes weren't realized.

Because hope is scary. Hope is fucking terrifying. It's going out on a limb, allowing yourself to be open and vulnerable, taking the risk that your dreams will fall flat. Pure, unqualified, unguarded hope is an enormous gamble.

But when I read that Gilda Radner quote, I had the most radical, earth-shaking thought:

Don't I have the right to be infinitely optimistic?

And it occurred to me that not getting my hopes up had never actually insulated me from pain and loss. It never made it better, when something didn't work out, that I'd tried to keep myself from wanting it too much. So it doesn't make sense, does it, to keep trying to tamp down on my hopes when it doesn't offer much protection anyway.

So I'm not going to do it anymore.

It's a huge shift in thinking for me, a whole new worldview, and it's not easy. Every time I think about the things I hope for, I have to silence the voice in my head that says, "Yes, but, what if...?" But I'm committed to making this change. I'm done with cautious optimism and guarded prognoses and not getting my hopes up. Maybe things won't work out, but then again, maybe I'll hit the jackpot.

I'm going to be infinitely optimistic. I'm going to be recklessly hopeful. And I invite you to join me.

(I'll probably still leave the slot machines for you to play, though.)

Saturday, July 26, 2014


My grandfather passed away earlier this year. It was absolutely devastating, because, well, it's absolutely devastating to lose someone you love dearly. That's not actually what this post is about, but even if it hadn't been directly relevant in the discovery that made me want to write this, it would be appropriate to start this post by talking about my grandfather, because he was always the person who made me feel the best about myself. His expectations for me - and for everyone in his life - were high, but so was his belief in our capabilities. And because he believed in me, I believed in myself. And when he told me that I was a "good-lookin' kid," somehow I couldn't doubt him - even though I would have come up with a million reasons not to believe anyone else who expressed a similar sentiment.

When we were preparing for his funeral, my family sat around tables in my grandparents' house, sorting through decades' worth of family photos for the ones that would be included in the photo slide show that would play on the video monitors in the funeral home. This was no small task, as we were limited to about 60 photos, and it is probably not exaggerating much to put the number of photos we went through in the thousands.

During this process, I came across a photo that caught my eye. It wasn't a photo that would be used in the slideshow, because my grandfather wasn't in it, but I quietly asked my grandmother if I could keep it, and slipped it into my purse when she said yes. And in the months since then, I've pulled it out periodically to look at it and ponder a few things.

See, here's the thing. I was a really, really cute baby, even by the standards that every baby is cute. I know this is true. I've seen the pictures.

I will even give you that I was a cute toddler, and a cute preschooler, and I was told this, by both loved ones and strangers.

But even by preschool, this was not what I saw when I looked in the mirror. I can't really say whether it was that I'd already started to internalize all of those subtle, societal messages of what constitutes beauty (and a human female's worth), or if it's some kind of collective unconscious, genetic memory thing, but by the time I was four, I was disappointed when I looked in the mirror and saw freckles instead of a tan, and brown hair instead of blond. I had already decided - that young! - that blond hair was better; more desirable somehow. I don't think anyone taught me that. I don't think it was even a message I got from TV, unless Smurfette's yellow hair really had that strong of an influence on me. After all, Snow White was a brunette, but even by the age of 4, I knew I would rather be Aurora than Snow White.

For the entirety of my childhood, into my adolescence, and even pretty well into my adult life, I hated what I saw when I looked in the mirror. This was compounded by PCOS (which was not diagnosed until I was in my later years of college, but started causing me to gain weight before I was 10). And of course, even if the media messages of what beauty was supposed to look like didn't start influencing me in preschool, it was certainly a factor by the time I reached middle school. I knew what I was supposed to be, and I knew I wasn't it.

I hated most pictures of myself, too. (This hasn't really changed much.) I will never forget when my homeroom teacher handed out our school picture packets my junior year of high school. As she handed mine to me, she said, "That's a really good picture of you." And I looked at the picture through the plastic window in the envelope, and thought "Is she fucking with me? Is that what she thinks I really look like?!" As far as I was concerned, those photos needed to be burned.

Which was why the photo at my grandparents' house caught my eye. Because it was taken around that time - maybe a year or two earlier. I honestly don't know what I would have thought if I'd seen this picture at the time. It's possible that I would have grudgingly admitted it was a good picture of me, even when I was 15. It's also possible that I would have wanted to burn this one, too. And that would have been a shame.

I look at the photo now, some 20 years later, and I want to cry. Because I remember what that 15-year-old version of me thought when she looked in the mirror, or saw a photo of herself. I'm not that far removed from the self-loathing. I've gotten better about it, but it's still there, to an extent, and it still happens when I see pictures of myself. Back then, I looked in a mirror, or at a photo, and I saw Fat. I saw Double Chin. I saw Short, Stumpy Neck. I saw Limp, Mousy Hair. I saw Greasy, Oily Skin. I saw Fat. (That one is worth mentioning twice - and I wish 15-year-old me knew when she had it good, as far as that's concerned.)

In the photo I found, it's Christmas Eve, and I'm sitting on the floor in the back room at my grandparents' house in front of an electric keyboard to play Christmas carols. My little brother is sitting next to me, grinning at the camera, and I am in profile, laughing at something off camera.

And I look at myself in that photo now, and I see long, glossy rich brown hair that catches and reflects the light, tucked behind my ear on the side facing the camera, and hanging perfectly alongside the other side of my face, ready and waiting to be tossed dramatically. I see a figure flattered by a long, flowing, sophisticated dress in a shade of burgundy that makes my skin glow. I see a fair, creamy complexion, makeup (I was 15 - I was definitely wearing makeup) perfectly applied. I see long, dark eyelashes and a perfectly defined brow. I see a lovely, genuinely happy smile.

In other words, I see a perfectly beautiful teenage girl.

And I ache for the ability to allow that 15-year-old I used to be to see herself through my 35-year-old eyes.

And I feel a little hypocritical about that desire, because the reality is, I still often see myself with that critical, never-satisfied 15-year-old's eyes. Just a few years ago, I attended a friend's wedding reception, and a photo was taken with the bride and groom and our group of friends. And then the photo was put on facebook and I was tagged in it.

And all I saw, when I looked at myself in the picture, was Fat Double Chin standing next to Drop-Dead Gorgeous People Who Should Be Models.

(Never mind that said Drop-Dead Gorgeous People would vehemently insist that I'm beautiful, too, if I told them what I saw in that picture.)

And I looked at that picture again recently, because the bride and groom had their first baby this past year, and after looking at the facebook photos of the baby, I looked at their other pictures, too. And suddenly, with just 3 years' difference in perspective, what I saw in the photo was completely different. (Well, not the Drop-Dead Gorgeous People part. I stand by that description of my friends.) But I looked at myself in the picture, and thought, "I actually look pretty cute there." Yes, I can still see the double chin, and I'm sure others see it, too. The double chin is there. It exists. I'm pretty sure it will always be there, even if I magic my way into a size 6 someday.

The difference is that it's no longer the only thing I see when I look at that picture.

Another thing that struck me when we were going through the family photos for my grandpa's funeral was how few pictures there were of me with him. The most recent that I could find went all the way back to high school. Because I'm the person who always groans when the camera comes out, and begs to be left out of the photos. Because I look like crap today. I'm having a bad hair day. I'm too fat. No, no, don't take my picture. Seriously, delete that one!

I have plenty of good memories of my grandfather, and the time that I spent with him. I don't need photographic proof that those good times happened. But it still made me a little sad that I was so worried about something as silly as how I looked that I wasn't willing to allow those moments to be captured.

So I've been trying to let go of that, at least a little bit. I'm allowing people to take my picture (although I do still sometimes request that really unflattering ones get deleted). My weight is the highest it's ever been, thanks to a combination of PCOS, repeated courses of steroids, and a disease that limits my ability to exercise (and, somewhere in the midst of that, an occasional "why bother?" attitude). There are a lot of days that I don't feel attractive enough to have my picture taken.

But you know what? A lot of those photos have actually turned out pretty cute. And even in the ones that aren't as flattering, if I take the time to look past the double chin or the big butt or the bulging tummy, I can see how much fun I'm having with the people I care about most.

And isn't that, ultimately, the most beautiful thing in the world?

Tuesday, February 4, 2014

I prefer to think of it as "vampire resistant"

I should be finishing (well, okay, starting) my reading assignments for tomorrow night's class, but Snowmageddon Part Infinity is supposed to hit tomorrow evening, so I'm kind of banking on class being cancelled. Anyway, I have important interesting honestly kinda gross things to talk about.

Yesterday was a momentous day for me, because it was the first weekday that my new health insurance was active. I have gone without insurance for almost a year and a half, and this meant that I was not able to get treatment I needed for my psoriatic arthritis. Luckily, in that time, I have not had a flare up other than some mild patches of psoriasis, but since this was in areas that were not visible when I'm clothed (arms and legs, people, get your minds out of the gutter), it was more annoying than anything. Today, I was able to get my doctor to call in my meds to tide me over until she had an appointment available. She also told me that I would need to go to her office or one of the affiliated hospitals to get bloodwork done this week. Since I was out anyway, and one of the hospital campuses is just a few blocks from my house, I decided to go today.

When I arrived at the registration desk, I considered the possibility that I'd made a mistake. It was close to 3 p.m., and I hadn't had anything to drink since I'd left my house at about 10:30 that morning, and I know even mild dehydration can make it more difficult to get blood drawn. There was a time in my life when that would not have been an issue, because getting blood from my veins used to be an easy task. I have had so many health issues over the years that I got used to being used as a pincushion, and needles are not a big deal for me. It's still not a big deal, but sometime in the last six or seven years, my body decided to rebel against any attempts to have its blood removed. It seems to be a misguided attempt on the part of my circulatory system to protect me from the loss of a couple teaspoons of blood, and I have to wonder if it's related to my immune system's misguided attempts to protect me from the dangers of my own connective tissue.

Still, unlike my immune system, which is pretty much just an asshole, I would like to think that this particular bodily idiosyncrasy would serve me well in case of a vampire attack.

I know that it's nearly impossible for any phlebotomist to find a vein in me, so I have taken to warning them when I sit down in the blood-drawing chair. This yields one of two reactions: either a curt nod followed by a determined jab with a regular needle, or a hesitant contemplation of the regular needle before pulling out a butterfly needle.

In either case, it is extremely rare that the phlebotomist will hit a vein on the first try.

Yesterday, it was the butterfly needle. It took two phlebotomists to determine that they had, in fact, found a vein in my left arm before they stuck me, but despite all their tapping on the vein, no blood came out. This was inevitably followed by jiggling the needle around in my arm while tapping on the vein. Both phlebotomists were puzzled by the fact that they weren't getting any blood from a vein that they were sure was there. I alternated between watching the jiggling (because, though I have no fear of needles per se, I do have a slight irrational fear that a needle will break off in my vein and travel through my circulatory system to my heart and kill me) and looking away (because, frankly, watching a needle jiggling under your skin is gross). It only took a couple minutes for them to give up on that vein, and then the first phlebotomist decided to try for a vein in my hand. She told me she hated to do that, and usually only did as a last resort, but I didn't mind if it meant that she would get the blood she needed and I would be done. The needle still required a little jiggling, but this time she did hit a vein and filled up the first vial with no problems. More jiggling was required for the second vial, and she only managed to fill it halfway before the vein collapsed. (This happens to me so frequently that you would think I'm an IV drug user. I'm totally not.) After some more jiggling, she decided she had enough blood in the second vial and pulled the needle out and said I was done.

I always feel bad for the phlebotomists when this happens, because it's happened enough that I'm well aware that it's not them, it's me. Still, many of them seem to think that I'm judging them and that I don't think they know how to do their jobs. The poor girl who drew my blood yesterday must have apologized at least 10 times, and reassured me repeatedly that she did know what she was doing. Honestly, I was impressed that it only took her two attempts to hit a vein, because I've had to have as many as five attempts before. I reassured her in turn that I believed she knew what she was doing, and this happened with anyone who tried to draw my blood. And I told her that I hoped that I had given her her challenge for the day and it would be easy sailing from there on out. She thanked me and sent me on my way.

I walked back out into the waiting area thinking that the experience I'd just had was going to be the most eventful portion of my day.

I was wrong.

I have written about the joys of my neighborhood before. I don't think, however, that I have written much (if anything) about my current next door neighbor.

In some ways, he is an improvement over the tenants in that house who came before him. For starters, no one has attempted to break into my house since he's lived there (knock on wood), and he's never been fighting out in the street at 2 a.m. On the other hand, I have vague suspicions that he might be operating a meth lab.

He's also just kind of mildly weird and creepy in ways that I can't quite describe, and he drives the one of the biggest, ugliest, tackiest trucks that I've ever seen, which he is incapable of parking properly (have I mentioned that my "street" is essentially a glorified shared driveway for the six houses on it, and it is extremely narrow and difficult to get into and out of, especially if someone has parked like an asshole?), and he frequently parks it in front of my house, which bugs the hell out of me. He is greasy and unkempt in a way that makes me want to take a shower if I have been within ten feet of him. He is probably mostly harmless, but I would still prefer to interact with him as little as possible.

The worst thing about him, though, is that no matter what he is wearing, his butt crack is always showing. And he spends so much time working on his junk heap of a truck that I have grown wary of ever looking out my windows. However, if I want to go places outside of my house, this means that I am unfortunately unable to avoid seeing his butt crack on a relatively frequent basis.

And yesterday, as I was walking back into the waiting room at the hospital lab, thinking about how well my body's refusal to part with blood would protect me from vampires, I glanced in the direction of the person standing at the sign in desk, and thought, "That butt crack looks familiar."

And then I looked up and saw that it was, in fact, my neighbor standing at the desk.

You read that right, people.


Now, you'll have to excuse me so I can research whether my new insurance will cover electroconvulsive therapy, because it's clear to me now that I have to get those images out of my head somehow.

Sunday, January 26, 2014


As near as I can tell, there are two different types of catastrophes.

Catastrophes in the first category are impossible to miss. They are loud and explosive and completely in-your-face. They consist of floods and fires and hurricanes and bombings and car accidents and plane crashes. They also consist of cancer and heart attacks and strokes and spinal cord injuries that result in paralysis. Sometimes they result in deaths. Sometimes they don't. Either way, the losses from these catastrophes are often substantial and devastating, and painful in ways that most of us probably cannot fully imagine unless we've been there.

However, these catastrophes have one redeeming feature: they are visible.

And visible catastrophes are often met with an unsolicited outpouring of support that can take various forms, be it emotional, financial, or material. Sufferers of these catastrophes are met with big love. Not that this can undo the damage, but it certainly helps with moving forward.

I don't mean to argue that there's anything wrong with this outpouring of support. Quite the contrary. By all means, we should reach out to those in need.

The problem is, the people who fall in this category are not the only ones in need of support.

The other category, as you probably guessed, is invisible catastrophes.

Shortly after I was diagnosed with psoriatic arthritis, I began to notice the "but you don't look sick" phenomenon. It works like this: many people with autoimmune diseases and other similar disorders that cause chronic pain, such as fibromyalgia, appear to be healthy and able-bodied. There is nothing in their physical appearance that gives away their level of pain or fatigue (except possibly for the fact that they're wincing with pain with every movement). Because of this, they are perceived as lazy malingerers, despite the fact that they may be pushing through unbearable pain just to leave the house to buy groceries. This perception can be exacerbated by the flare-remission-flare-remission progression of these types of illness. One day, a person with an autoimmune disease or fibromyalgia may be able to function almost completely normally, and the next day, without warning, they may not be able to walk.

Illnesses like these are invisible catastrophes.

So are mental illnesses.

Retrieved from:

Other invisible catastrophes can include things like being a victim of bullying or abuse or rape, or infertility or pregnancy loss, or, on the flip side, unplanned pregnancies, and possibly abortion or adoption plans. This is by no means an exhaustive list, and I'm sure I could go on and on.

One huge barrier for the people who experience invisible catastrophes in accessing support is that they are generally not going to get help unless they ask for it. And asking for help can be one of the hardest things in the world to do.

Unfortunately, sometimes when people experiencing invisible catastrophes do reach out for help, the response that they get is less than helpful.

Some of the responses are victim-blaming.

A victim of bullying may be told, "If you weren't so sensitive, they wouldn't pick on you."

A rape victim will very likely be asked, "What were you wearing?"

Some of the responses are a minimization and denial of the heartbreak that the person is experiencing.

Sufferers of pregnancy loss may hear, "At least you know you can get pregnant."

Most people are only going to have to hear something like this once or twice before they stop reaching out for help.

Some of the invisible catastrophes have stigma attached, like mental illness and unplanned pregnancy, and speaking about them in some circles is completely taboo.

Some of these responses may be well-intentioned, or simply a reflection of not knowing what else to say. Some of them may be coming from a darker place, a place of judgment. Regardless, they serve only to further isolate the people who are going through invisible catastrophes from the support that they need.

Here's what I want to say to any of my readers who have experienced or are currently experiencing invisible catastrophes:

I see you.

I see your loss and your pain. I see your anger, your hurt, your frustration, your grief, your disappointment, your fear. I see your anxiety as you struggle with the choices you have to make in situations where there is no right answer. I even see the feelings you may not be willing to admit: your jealousy, your bitterness, your hate, your guilt.

And your feelings are valid. You have a right to feel them. You have a right to acknowledge them and own them. Because you'll never be able to work through them if you don't.

You also have a right not to be judged for your feelings.

I also see your strength. Whether you realize it or not yet, you are a survivor. You have made it this far, and that's quite an accomplishment.

And I want you to know that you can go on. You will heal. It will probably take longer than you want it to, and you won't be the same as you were before the invisible catastrophe hit, and sometimes those painful emotions will pop up on you again when you least expect it, but that's okay. The point is, it will get better than it is now.

But in the meantime, your pain is real, and I recognize it.

You don't have to be invisible.

To anyone who may know someone who is going through an invisible catastrophe:

Reach out. Let that person know that they are seen. Let them know that their pain is valid.

Don't try to fix, or minimize, or deny. Don't judge or blame.

Just listen, and be present.

That may be all they need from you: to know that you see them, too.

Friday, January 10, 2014

Seeing Red

This post is specifically for people who are interested in my infertility journey (which starts here). As this relates to infertility, I would advise you to draw the logical conclusion about the topic of this post based on the title, and decide before going any further whether you actually want to read on.

Still here?

(Hint: it's periods. This post is about periods.)

Continue reading at your own risk.


I have never known a woman who looks forward to a visit from Aunt Flo, regardless of any mitigating circumstances. As guests go, at her best, she is messy, smelly, and always outstays her welcome. Her visits are usually physically painful, and can make even the calmest woman an emotional, irrational mess. And for most women, she visits about once a month. The horror!

Within the infertility community, her visits take on additional horror.

To a woman who is struggling to get pregnant, a visit from Aunt Flo means that this is another month that she is not pregnant.

This is something that I never experienced, and not just because I lost my health and my savings and my income before I had a chance to try to get pregnant. But you can read all about that here.

I was never sure exactly what it would be like with clomid; whether I would have a period after an unsuccessful cycle or not. I had a vague idea that I would just have to depend on pregnancy tests, but I still don't know for sure. Even though I never experienced it, though, I can certainly empathize with how devastating it must be to see red month after month when you're trying to conceive.

But because I usually didn't have periods when I wasn't on the pill, visits from Aunt Flo were mostly a monthly source of aggravation and inconvenience for me when I was on the pill, and the furthest thing from my mind when I wasn't. They didn't seem to serve much purpose for me either way. In fact, if things had gone according to my plan back then, and I'd gotten pregnant and had a baby, I was planning to look into getting a partial hysterectomy (note to self: write future post on the reasons I hate that term) or endometrial ablation, because I didn't see the point of continuing to put up with my uterus's antics after it had served its purpose.

Of course, that's not what ended up happening. I ended up being forced to abandon the baby plan without ever having a chance to try.

But as I've written about before, despite the fact that I did not go back on the pill, something unexpected started happening in December of 2012: I started having periods. Not every month, but still with some level of regularity, approximately every three months.

That is, until this past October. Not that I had any idea at the time that something in my body was changing yet again.

In November, and then December, I thought it was a fluke. But now it's January. It's a new year.

And for four months straight now, I have had a regular, non-medicated 28-day cycle.

From what I've heard, I'm pretty sure this is rare even for women who have no fertility issues and have a generally regular cycle.

For me, it is nothing short of a miracle.

I don't even mind the mess and the smell and the cramps and the mood swings anymore.

Because after coming face to face with the possibility that my body would never function to its full potential, and now less than 2 months away from my 35th birthday (or as I have thought of it since I started this journey, my use-by date), seeing red means that there's still a chance that my body has the potential to do the one thing I've always wanted it to do: bring a child into the world.

And maybe, just maybe, it will be possible without fertility treatments.

For me, now, seeing red means hope.

Maybe 35 won't be so bad after all.