Adventures in Singledom

I’ve been willfully single for a year now, and it’s been very good for me. There have been other times in my life where I’ve been single, but this time has felt really different. Since I was 16, I largely allowed my identity to be defined by whoever I was dating at the time. And I was a serial monogamist most of my adult life. When I was with someone, I was reacting to them. When I was single, it was more like I was reacting to their absence until the notion of that faded enough for someone else to catch my eye, and for the cycle to start again.

This past year, I’ve had old flames looking to reignite with me as well as new ones. But something in me had grown very weary of the cycle I’ve repeated so many times. For awhile, I forged a platonic friendship with a guy who the timing was off with initially. This time around, we were both available at the same time, but I didn’t feel like I needed another trip on that merry-go-round to know that I didn’t want to be on it again. Sure, we once had mind-blowing chemistry. But that’s not so appealing to me anymore.

That’s been an interesting experience. Instead of giddily going for it and getting all wrapped up in the butterflies, I’ve gotten to know people in this very level-headed, platonic way. And I’ve had a wide variety of experiences with people that wouldn’t have been possible had we entered into a sexual relationship. At first, I was proud of myself for setting boundaries and sticking to them. But after several months of this, I started to wonder if the sexual being in me was lying dormant temporarily, or indicative of a larger change. Hormones, maybe? I’m a woman over 40, so that seemed plausible.

I just wasn’t feeling attracted to anyone that way, and it started to feel a little too normal. It’s been beautiful getting to know people and enjoy so many other aspects of them besides sexually, and my perspective has been forever changed. I no longer see the monogamous sexual relationship as the pinnacle of relationships. It took this year to reveal how many biases I still had to that effect. And I’ve gotten a lot more clear about the kind of relationship I DO want to invite into my life.

I’m finding that to be vulnerable authenticity. Being more of that with myself as I peel back the layers that years of losing myself in a series of others have plied me with has been equal measures of challenging and rewarding. In every interaction is a choice of whether to be honest, real, and vulnerable, or deflect and hide. But there isn’t much magic or sparkle in deflection. It’s more of a lonely place where you decide that the person you’re with probably can’t relate to your situation, so why make them feel uncomfortable?

Well, maybe feeling uncomfortable is what prompts them to expand their perspective in some way. Or maybe they can relate better than you imagined. There is so much that we don’t know about ourselves, much less other people. Being ruled by a notion of what makes people comfortable is incredibly limiting. I’m doing my best to bust out of that container whenever I notice myself shrinking to fit inside it.

A few weeks ago, I noticed someone in a way that I haven’t before. I say that, because the me who noticed him is different from the me who has noticed others before him. It was an interesting set of circumstances that put us in the same place at the same time, and I had to step well outside my comfort zone to acknowledge him. He responded a bit. It was enough for me to feel the part of me that I felt was dormant, and maybe gone, is still very much alive. And more like a Ferrari sitting in a garage, fueled up with battery charged than a bear coming out of hibernation. Someone stepped in, checked the gauges, admired some of the details in the stitching on the seats, shifted into neutral and revved the engine a couple of times before putting the handbrake back on and exiting the vehicle.

It was good to want to be seen. It was also good to recognize that my standards are far higher now than they’ve ever been, and I won’t be dropping them again. There will be no more settling. <3

A curious urn

I got this book yesterday: “I’m Dead. Now What?” when I was at Hallmark picking up some sympathy cards for my former mother-in-law and her mom when I noticed it. An employee said “That’s actually a really great book, if you can get past the title.” My eyes dipped to the floor before meeting his. “I’m sure it is…” then I mumbled “I wish some people I knew had it or something like it…” too low for him to hear, and I wouldn’t repeat myself. I picked it up and put it in with the cards.

I was on my way to deliver a black onyx urn to my dead (ex) husband’s last girlfriend, and I didn’t have much time. But his mom used to work at the Hallmark store, so I made the effort to get cards with that gold crown on them. She never liked me much, but I didn’t take it very personally. Shannon started acting differently when he started dating me. I think she was happy to see that initially, but that faded quickly.

The urn was a curious thing. A couple weekends ago, I went up to Canton to V-Rock, a tumbled stones and crystal warehouse, with some friends. Of all the things I was drawn to, the pull to this black onyx urn was both the most curious and strong of anything there. I asked the others about it to see if it was for any of them. I couldn’t figure out why I had noticed it at all. I left the shop without it and the curiosity about it faded with each mile traveled back home to Columbus.

Two days after Shannon died unexpectedly at 42, I found myself on a spontaneous day trip to Cuyahoga Falls with the woman who officiated our small wedding at the end of May in 2015. I met her less than a month after Mark died, and she’s been a very significant teacher and friend. We went for her dental appointment, and decided to stop by V-Rock so she could pick up a few things she had purchased for others. As soon as that was mentioned, I knew why I was going. That black onyx urn wanted to make its way to Shannon’s mom before his funeral service next Tuesday, and I was going to get it started on its way.

I asked his ex-girlfriend, who had been kind enough to contact me before the family made the news of his death public (though that’s not how I found out), to meet me to pick up the urn. And she obliged. When I met her, I saw the woman with the long, fiery red hair that I’d seen in a vision a couple years ago of him with his future wife and kids. I saw two little girls in that vision. Blond. It looked like Easter morning. And that was one of the first things I blurted out after she sat down to talk to me. No, no… not awkward at all.

Obviously, things hadn’t gone the way of that vision, and we were both sad about that for different reasons. But I know we both hoped he’d be happy someday and have the family he wanted. She told me not to feel obligated to sit and talk to her any longer, which made me realize I’d been sitting there awkwardly for awhile, not knowing what else to say. So I gave her an awkward hug and bade her good day… life… and headed out.

I felt lighter after that, with a big chunk of my mission having been accomplished, at least as far as I can tell. Shannon and I never really made sense together, even when we were. But I feel we learned a lot from each other, and definitely changed the course of each other’s lives. I haven’t typically been very good with social etiquette or obligation, and it doesn’t look like I’ll be starting now. His funeral and celebration of life services are this Tuesday, and I’m not planning to attend either of them.

I’ll give myself some time, but I’m going to fill that death book out and get my things in order for myself and anyone who might have to deal with it. Mark didn’t have anything like that, and I highly doubt that Shannon did, either. As I write this, I’m just feeling very sad in the way that grief brings up all sorts of emotions, and they come and go unpredictably. This time, I’m just letting them flow through me without judgment. Healing begins with our own heart and spreads out from there.

Remembering how to write and cry

Big sigh as I finally settle in to write. So much has happened, and I’ve said so little. For years now, I’ve barely written. It’s a huge part of how I think and process things, and yet I’ve abstained. Why?

Probably because it got so big, and part of me has been scared that once I start, I won’t be able to stop until I get it all out. And I don’t have the time for that, do I? To write forever and ever… That’s how I felt about crying, too. But I’ve cried a lot lately. And it doesn’t usually last that long. I cried on the drive to work this morning. I wailed and howled in my car with the windows cracked so it would have somewhere to go. I cried as I walked to the parking garage from the office. It was cloudy and cold with a brusque wind. I ran until I couldn’t. To keep warm and get there faster. While I cried. It was darkish and rush hour long over, so I only passed a couple people along the way. Only let my hair obscure my face for a few people and let the crying sounds go quieter as I passed them.

And as soon as I closed that car door with myself encased, I let it the fuck go. I wailed, then snub snub snubbed as I came close to the exit of the garage and noticed there was an attendant at the non-monthly spot one lane over. And then I was done with unintentional human interaction for the whole drive home. And I screamed my cry then. It was almost like I was singing high notes. I sustained some of them for quite a long time. And then I settled down a bit and called a friend. And I vented a bit to him until he had to go. Then I finished the drive home.

Shortly after arriving, I subjected my mom to a few solid hours of my unbridled frustrations. I had so many, and they just needed to be heard… to be out of me and into the world… I cried some more. She hugged me close and cried with me. Not fixing, not advising. Just listening and being present and loving. Such a nurturing soul, my mother. I am so grateful for that. I didn’t put on kid gloves. I didn’t curb my language. I just let it all the fuck go.

And I could stop right now, and part of me wants to, because I’m feeling so very tired, wrung out, raw and numb. My glasses are once again speckled with the remnants of so many tears. I keep falling asleep with my fingers on keys. It’s been tough for me on a lot of fronts. But I know I’m going to be OK. And I do have a lot of friends. So grateful for that.

So this is unfinished, but it’s writing. I wrote. And sometimes that’s just how life goes. Things can remain seemingly unfinished. They can drop off suddenly. They can build and crescendo only to evaporate… Life is full of mirages and oases. I’d like to say that I’m wise enough to know the difference most of the time, but I’m certainly not. I’m going through… I’m going THROUGH.


Hindsight can be a tricky temptress, luring you in and giving you the idea that you could’ve done things differently or better, if only… The siren song is often the sweet lullaby of “This could’ve saved you or somebody else from so much pain.” With this one simple trick, you could just poof away a bunch of pain and suffering. If only you hadn’t zigged when you should’ve zagged! But it’s a lie. Always. Because, quite simply, YOU CANNOT CHANGE THE PAST.

The vast majority of our insight comes to us via hindsight. We best understand things when they’re firmly in the rearview mirror. We generally have FAR more information about a situation after it has occurred than we did at the time when we were first processing it. And quite often, a moment that later holds great significance to us appears routine or ordinary as it’s being experienced initially. But only later is that significance revealed.

I’ve come to trust that in any given moment, I am doing the best I can with all the information I have available to me at the time. And so are you. So is everybody on the planet. We’re a very judgmental society, so most of us balk at the idea of “best” and say things like “Well, clearly I wasn’t doing my best when I committed X blunder.” Oh, but you were. There are so many factors involved that we tend to overlook the things that compromise our ability to make decisions and so forth. Maybe the day you did that thing that makes you cringe when you think about it you had barely gotten any sleep for several days in a row and were running on fumes. Maybe you hadn’t been eating well and your body and brain didn’t have the fuel needed to move you around and think clearly. Maybe somebody had been pushing your buttons like they were trying to win at a video game they’d never played before, mashing away at the buttons with reckless abandon, just trying to make something happen.

We forget all the things that led up to the cringey thing, but boy do we ever remember the thing itself. That’s usually emblazoned in our memory in vivid technicolor and available for instant and rapid playback. In my work, I talk a lot about self-acceptance, forgiveness, kindness and compassion, which are all a part of real self-love. To get to that self-acceptance and self-love, we don’t need to take into consideration all those factors (though that can be very helpful sometimes), but rather trust that we were doing our best at the time under the circumstances and with the information available to us.

If I trust that in the past, I did the best I could at the time, then it’s a lot easier for me to trust that I’m doing my best in each moment as it arrives. Right now.* And if I trust that, there’s no need for cringing, because I’m doing my best, and future me knows that. So does present me, who is creating my future moment by moment. The future isn’t plans and projections. It’s a collection of moments that lead up to a moment. Another point in time. I want to create those moments with gratitude and abundance, not worries and fear. I want my collection of moments to be filled with more joy and laughter than sorrow and regret. And so I live that way.

This is far more of a practice than a realization. In every moment, I’m either consciously aware that I’m doing my best with what I’ve got, or I find a way to remind myself of that fact, or I completely lose sight of it for awhile and feel some strong and maybe also unpleasant feelings. And whatever I’m feeling is OK.

I wrote that over a month ago and got distracted after I wrote that last sentence. I wanted to expand on that thread, but every time I’ve come back to it, I can’t seem to pick it up again. My websites were all down for awhile due to hosting issues that have now been resolved. Would’ve just posted it immediately if I’d known… Which is pretty much the point of the post. Hindsight, right? I did the best I could with the info available to me at the time. And so did you. Really.

The curious habit of my girl, Harold

Harold on my head

Early morning bird-head.

I have this 16 year old female blue crown conure (a small parrot) named Harold. My friend Joanna who loaned me the $400 to buy her when she was 10 weeks old was the one who named her. This breed, like most in the parrot kingdom, is not sexually dimorphic (both sexes look the same), so naming them is just making a guess anyway. So for the first 8 years of Harold’s life, she got male pronouns. And then, to my great surprise, she laid her first clutch of eggs. It took awhile, but I figured the least I could do would be to give her proper female pronouns. And sometimes I call her by her full name, Haroldina. That’s usually reserved for when she’s being a jerk.

She is my only pet at this point, and will likely be my last. Statistically, she’s probably at mid-life, so I’ll likely have her a good while longer yet. She’s been with me through a lot, and like me, she did not emerge completely unscathed. She has been a habitual feather plucker only slightly longer than she has been known to be a “she.” It’s a nasty habit for birds, and a product of captivity. They simply do not do that at all in the wild. If a parrot’s missing feathers in the wild, it’s likely due to a fight, or a quarrel with their mate. But Harold does it, and rather than make her even more miserable by attempting to discourage the habit, I just let her be. We all have our vices, after all.

After Harold first laid eggs, it was several years after that before she laid more. I hoped she was only going to do it that once, let me know she was a girl, and be done with it. Since she’s the only bird, the eggs are unfertilized (like the chicken’s eggs you eat in your omelets). The process is hard on her little body, so it’s really best for her not to lay eggs, especially being older.

But she has laid eggs again several times in the past few years. And when she starts nesting and getting ready for eggs, it correlates more with times of massive change in my life than it does with the seasons. The typical time for birds to nest and lay eggs is in the spring. The time of sunlight gets longer, and that lets them know it’s time to raise some babies. Not Harold… She has laid eggs in the fall, middle of winter and now in summertime.

In September 2011, I had just broken up with my boyfriend and moved out of his house, my time trying to be a programmer had come to an end and I was staying with my parents briefly until the house I’m living in now was ready for me to move into. Harold was acting so strange the whole time she was at my parents’ house. I forgot that what she was doing was nesting. She tore up the newspapers at the bottom of her cage, and would hide under the papers. She seemed lethargic, and also took to making an awful sound much of the day.



I moved us into my little old lady house, and the night I put her cage in the room she’s in now (my office), she laid her first egg in awhile. It was an odd time of year for that, but that’s how it went.

Last November, my last contract as a DBA ended and I got back to the business of trying to figure out what I want to do for a living again. I got really sick with bronchitis (or something like it) just before Thanksgiving, and stayed that way for a few solid weeks. Again, my feathered friend laid some eggs. I went through a lot of changes that aren’t so easy to describe. Digging through stuff in therapy changes. Significant changes to the core of who I am… Or rather, peeling back layers of the onion to reveal more of that core.

So far this spring, she had been fine. Perhaps a bit more noisy than usual, but that comes and goes. I had a brief contract doing UX work in May, and I worked on a startup for a few weeks after that. A few weeks ago, I felt like I needed to let the startup go, and I did. Since then, I’ve been quietly reassessing. And I feel that something big is coming. I felt like I had a good idea of what that was, but now I’m not so sure. It just feels like another major shift. And sure enough, my little bird is nesting in the next room.

I wish I could stop her from doing that. I’ve read plenty of blogs about how to discourage breeding behavior in pet birds. I’ve done everything they’ve suggested except for getting her hormone injections of some sort. Unlike cats and dogs, you can’t easily spay or neuter birds. They’re not generally prolific enough breeders to warrant such a thing, anyway. I just don’t want her putting her non-spring chicken body through that for nothing. But it does make me wonder what’s coming up next thanks to the bird who lays the golden change.

My Horse Friend Charm

Before I was a member of the board of directors at Serendipity Stables, I was just a person who went to workshops there. One such workshop was in December 2011. It was one of the several Native American Energy Balancing workshops I attended, and it was just Michele Davis (Serendipity’s founder and President) and me for this one. It was cold out, so we did most of the workshop inside Michele’s house. She showed me how to do some energy balancing on her cat, Ruby, who quickly went from purring to napping. Then Michele suggested I go out to the stables and do the same work with Sere (pronounced “SAE ree”), the oldest and most experienced healing horse. I went out, but couldn’t find Sere. This was before she had her cataract problem, and she was roaming the grounds freely. There were a few of the horses huddled in the stall behind Sere’s. I walked up to the gate and asked out loud “Who wants to work with me?”

Before I finished that sentence, one of the smaller horses with big, soft eyes had made her way over to me and looked right at me. It seemed clear that she had volunteered. She didn’t nose around for treats, as is often the case. She just looked at me, and I said “Well, thank you…” and as soon as I started to wonder which one she was (several of them look very similar) I felt like this must be Charm. She dropped her head and her breathing slowed. It seemed like she was in what Michele referred to as the “healing stance.” I felt like instead of practicing on her, she was doing healing work on me!



Michele came out to see how I was doing, presumably with Sere. When she saw me with Charm, she said “She’s doing healing work on you. Don’t worry about practicing. She says you need some help.” I did. I had been diagnosed with a 4cm ovarian cyst a few days prior to that. The doctor told me that she would let it go for a month and see if it got bigger or smaller. And if it got to 5cm, she would decide whether I needed surgery or not. And as Charm stood there in front of me, I felt an odd sensation around the area where the cyst was. It felt kind of like popcorn popping inside me. Lightly. It wasn’t uncomfortable. Just unusual. When that sensation subsided, she brought her head back up, and Michele gave me a couple treats to give her for her work. She let me practice on her after that, and I felt great when I left that day.

About a month later, I went back to the doctor for a follow-up exam. I didn’t have any expectations. I figured it would probably be the same size, or maybe a little smaller. I was pretty surprised when she told me that my ultrasound was completely normal. The cyst was completely gone, and everything looked as it should. This is not unheard of, or even terribly uncommon. Most women have a few ovarian cysts over the years. They generally come and go without even being noticed. But I was thrilled, regardless. That meant no surgery for me, which was great because I was losing my health insurance at the end of the month, and that appointment was the last one I went to that was covered.

I feel that Charm helped to heal me. And she did it asking for nothing in return (except for a couple horse treats). That was my first of many good experiences with her. A few months later in July, I became a board member. The horses help people. They are incredible beings and wonderful healers. This is just a small example of the many things they’ve done to help people, and especially children. Many times people come to the stables after they’ve exhausted most other options. They figure “Why not? It won’t make things worse.” and often they leave surprised by the help they received. And they often return again and again.

We had an unfortunate event take place this past Friday in the wee hours of the morning. While Charm was lying down sleeping in the pasture, a coyote attacked her and mauled the left side of her face. Thankfully, both her eyes were spared, but there is a lot of damage on her face from her ear to her nostril. It was a hugely traumatic event for her and the other horses.

Many of you have sent healing energy to Charm and the other horses during this difficult time. We appreciate it so very much. She is responding well to the treatments, and it looks like she will recover from the attack. It is going to be a long road to recovery for her, though. She is such a sweet, gentle and giving soul. Please keep her in your prayers and send healing energy if you are able to do so. Also, if you would like to donate, please click on ReDonate and either make a one-time donation, or sign up for the reminder service and just give what you can each month. You’ll just get a reminder email with a link that you can click on to donate, change the amount, or ignore it. Completely up to you.

There is something very special about Serendipity Stables and Charm. I know many of you who have been there have experienced it firsthand. Those of you who haven’t yet owe it to yourselves to come and check it out. We have an open house on the Second Sunday of every month. We hope you’ll come and join us at 21721 State Route 47, West Mansfield, OH, 43358 between noon and 4pm.

Update 4/20/2014: Charm made a full recovery and is doing very well now. She’d still love to see you at any of our Second Sunday Open Houses! 🙂

A little bit about intuition

I used to be a lot more of a gamer than I am now. I always enjoyed games, especially video, board and card games. I think somewhere around 2005 I started hosting board game nights with a group of guys I worked with a couple times a month. I only owned a few games, but I lived in a big house with a nice place to play, so the guys would bring their duffel bags full of games and 6-packs of good beer and some energy drinks. We’d play for hours and practice the fine art of trash-talk.

A few years ago, I was hosting a game night and I won at Alhambra again after having my ass handed to me in some other games. I was wondering aloud why I usually won certain kinds of games like Alhambra (some strategy, but lots of variables left to chance). My die-hard gamer friend turned to me and said “It’s because you play intuitively rather than strategically.” Huh. I must’ve looked confused, because he then offered further “It’s why you rock at Alhambra, but you suck at chess.” OH!

That applies to a lot more than gaming in my life. In fact, I think it applies to every aspect of my life. I feel like I’ve always been that way, but it’s only been in recent years that I started to accept and understand that about myself. Before that, I feel like my intuition was always there, but it was crushed beneath my mountains of logic, rationalization and justification. “This and this, therefore that.” In thinking and acting along those lines, while largely ignoring my intuition, I put myself through a vast world of pain.

You're entering a world of pain!

If only my intuition was as clear…

Back up there for a moment. Re-read that last sentence a time or two. The key phrase there is “while largely ignoring my intuition.” I am NOT saying that rational thinking is bad. Rational thinking is great! I have tremendous love and respect for amazing people like Albert Einstein, Carl Sagan and Neil deGrasse Tyson. The problem comes in when that rationality is divorced from intuition. They should be dancing together. Daaaahnnnssiing, dahlingk!

In recent years as I’ve opened back up to my intuition, things have gotten infinitely more interesting, weird, bizarre, embarrassing, and awesome. [random: I say “Oxford comma” in my head whenever I decide to use one, which kind of answers that song by Vampire Weekend.] I’ve made some big life changes and pulled 180’s with eye poppin’ G-force. This is not for the faint of heart and comes with all sorts of warning labels. But as with most warning labels, I peel them off and stick them somewhere inappropriate that makes me giggle, and then I do my thing anyway.

I watched the movie, Jeff, Who Lives at Home when it came out in the theater last year, and really identified with it. If you haven’t seen it, here’s the trailer. Jeff has all these random coincidences and sees signs everywhere. But which ones should he pay attention to or act on? Well, pretty much all of them. Doing that takes him on this crazy journey. He gets hurt a lot along the way, and at best people think he’s a lovably kooky slacker. At best. But people also think he’s straight up nuts, incredibly lazy, gullible, [Oxford comma] and useless. He doesn’t know why he’s being prompted to do these things. But he is and so he does them (often against his judgment and the judgment of those around him). He doesn’t have any real clue what it’s leading up to. There’s no goal he’s working toward or something he’s trying to attain or acheive. He’s just doing what feels like the thing to do in that moment and going with it.

And more and more, that is how I’m operating in my life. I’m currently unemployed with no clear idea of what I’ll be doing next for a living (well, I’d like to do UX and user research work, but it’s not like I know where, when, how or if it will happen). I know many people who would be terrified in my position. The uncertainty, instability, etc… But I’m not. I feel pretty good, actually. I have a robust support network of friends and family right now, and I’m just doing what feels right in each moment as it presents itself. I’m figuring it out as I go and playing it all by ear. And I feel like everything is working out just fine.

I’m fine, then?

I had my sleep study a week ago last Wednesday. It wasn’t the most fun I’ve had, but it wasn’t awful. I went in around 8pm and they had me hooked up to electrodes, breath tubes and all manner of sensors and ready for sleep around 9:30pm. I slept on my back, kind of afraid to move. They assured me that everything was latched onto me securely, but I didn’t want them to have to hook anything back up again. I had to flag down the attendant a couple times to go to the bathroom in the night. It was her job to watch me on night vision camera, so I just waved my hand and she came in. Yeah, kinda creepy.

In the morning they unhooked the breath tube, the electrodes on my legs and the sensor belts around my torso and let me sit in a recliner and mess around on the internet while I waited for them to tell me to take a nap. When they did that, I got all hooked up again and calibrated the equipment by moving my eyes and grinding my teeth on cue. And then I tried to sleep. This is not how my narcolepsy symptoms manifested at all. They didn’t have me listen to a lecture, sit in a meeting or read a book until I blinked out. But I suppose they checked the order I went through the sleep stages when I napped (narcoleptics hit REM sleep first unlike most people). And I took 5 scheduled naps. I think I actually fell asleep for 3 of the 5.

At 5pm after the daytime study, they unhooked me and sent me home with electrode goo (the consistency of Vaseline and sand) all through my hair and still on my face and body. Unpleasant, but not awful. They made it a point to tell me several times that they wouldn’t discuss any of their observations with me, and that I’d have to wait for the doctor to look over my test data and get the results in a consult within the next couple weeks. OK, fair enough.

On Friday, 8/10/12 (aka “yesterday”) I got a letter in the mail from a neuroscience lab. I figured it maybe contained the date for my consultation to go over the results. Finally, I was another step closer to getting my diagnosis and then treatment. I was giddy as I opened it. And this is what I read:

“Your sleep study was rather unremarkable. Your nighttime sleep was normal and your daytime portion of the test failed to show evidence for narcolepsy. He might have an idiopathic hypersomnia but overall this sleep test seems to be normal. Certainly, if your symptoms persist and no other cause is found, then we could reevaluate this in the office.”

My first thought was that my results got mixed up with somebody else’s. I think it was because he used “He” instead of “She” and I also just didn’t know how to wrap my head around those results. That thought was fleeting and was gone in a second. So my sleep study was “unremarkable” and “seems to be normal.” So what does that mean? Before I could think much more about it, I just started to cry.

I’m not a hypochondriac, nor have I made these symptoms up. I’ve dealt with this crap most of my life. And now there’s no diagnosis and therefore no treatment. Huh.

My mind spun through all the stories of all the times I’ve fallen asleep inappropriately and at inopportune times. “But what about THAT and there was THAT and oh man… that…” It’s normal… I guess. Yay?

It just made so much sense to me that I was narcoleptic. That answered a question. And then that answer evaporated into the ether.

When I was 23, I went through a lot of changes in my chemical makeup. I guess. Basically I went from being 5’8″ and having to eat a ton to just keep 117 lbs on my frame to gaining weight and starting to experience mysterious health problems. In a matter of weeks, I went from sleeping 6 hours a night to 13+ hours. I had experienced that during a bout of severe depression when I was 20, but I didn’t feel like I was depressed when I was 23. I was just going to work and doing my thing. Felt relatively happy. But as my need to sleep increased to the point where it was hard for me to function, I felt less happy.

I went to the doctor and got all kinds of tests run. They all came back perfect. Like “Do you run? You’re in great shape!” (note: I was a couch potato with a high metabolism and ate a lot of fast food. Never understood how my blood work was so great.) I was a transcriptionist at Harding Hospital (a mental hospital) and had learned about things that caused symptoms similar to mine via typing up psychiatric evaluations and patient histories. I was sure it was a thyroid problem after everything else came up normal or better. When they tested for that and it also came up perfect, I felt so lost.

At that point, I was sleeping 13-18 hours in 24, and could not force myself to stay awake at work. I was foggy headed, couldn’t think clearly and missed most appointments regardless of how many reminders I set for myself. And yet… I was fine according to the tests. But I wasn’t. I wasn’t fine at all.

Eventually, I walked to the outpatient side of Harding and talked to a psychiatrist. I didn’t know what else to do and I just couldn’t continue like that. He tried me on Prozac first. For about a week I was able to get out of bed in the morning. I also developed a ravenous appetite, yet I began to lose the weight I had gained. Didn’t make sense, and after a week I stopped being able to get out of bed in the morning again. He tried me on something else. It didn’t work either.

And when I had completely given up hope, he tried me on Wellbutrin. And that was the magic pill for me. Within 2 days of first taking that, the fog had lifted completely and I went back to only sleeping about 8 hours a night. I got right out of bed in the morning and felt “normal.” I also started to sweat about 3 times as much as I used to and had crazy vivid dreams, but hey. It was a miracle to me. I was a functional human being again. It was amazing.

I had to take that for the next 5 years. Every time I stopped, the excessive sleep problem came right back. When I was 27, I got far more sick and gained far more weight. Then I turned to fasting and a primarily raw vegan diet, stopped taking all my medication and got really healthy. I did that for a couple years, and while my arthritis, allergies and all that other unsavory stuff went away, my narcolepsy symptoms persisted. Which is why that diagnosis made so much sense to me. And yet somehow, that’s not it and I’m “normal” again.

We’ve all got our stuff. And as far as things go, this isn’t anything debilitating or life threatening. And I’m very grateful for that. Most of the limits I operate under at this stage in my life are self-imposed. I’m grateful for that as well. This is just something to process and deal with. I don’t think I’ll pursue this any further (via another sleep study, etc). I’ll continue to self-medicate with caffeine and such as long as what I do for a living requires it, and I suppose that’s about it for now.

Smells like Narcolepsy

Hey, friends. Since my last post about my battle with sleepiness, I have been to a sleep consultation and talked more to people with sleep disorders. I have a sleep study scheduled for the beginning of August, so I will finally get to explore treatment of this problem I’ve dealt with nearly 30 years. After spending 10 minutes talking to a sleep specialist and explaining my symptoms, he said it definitely sounded like narcolepsy without cataplexy. That last part is something I’m extremely grateful for. Narcoleptics with cataplexy lose motor control and faint when experiencing strong emotions like being startled or really happy. Basically, their brain gets tricked into thinking they’re asleep when they’re not. I don’t have that part, and I’m really glad about that.

My narcolepsy is more mild, and that’s part of why I’ve gone so long without getting it diagnosed. It can be really annoying and inconvenient, but it’s not life-threatening in my case. Since I first wrote about it, I’ve been improving my sleep hygiene by getting 8 hours of sleep most nights and trying to keep to a regular sleep/wake cycle that centers around my day job. And my symptoms have improved a bit, but they haven’t gone away. I’ve explained to my managers that I’m working on getting treatment for it, and they’re understanding to a degree, but still get frustrated with me when I fall asleep inappropriately. Sometimes I can stay awake and sometimes I can’t. I suppose that’s what it boils down to. And sometimes I can get 8+ hours of sleep a night, and the next day feel sleepy. I’ve improved my diet again, and that helps, too, but there are still a lot of factors that are beyond my control. And that’s where the treatment comes in.

Watching things like Lissa Rankin’s TedX talk has helped me to understand some of the deeper implications of the problems we experience with our bodies. I’m working on a more holistic approach to… life. It’s all part of the journey. Bumpy though it may be from time to time.

Sleeper Agent

I fell asleep in a meeting at my new job today. Unfortunately, that is not an unusual occurrence. I’ve spent a fair amount of time explaining myself to my new bosses and coworkers. It’s been awhile since I’ve been around people who don’t know that about me who are affected by it after being in my previous job for so long. So I’ve had to give my explanation several times. It generally goes something like this:

“I’ve been like this since I was a kid. In school I would fall asleep during lectures, regardless of whether I was well-rested or not. I upset a lot of my teachers over the years. I know it looked to them like I was disrespectful and lazy, but I’ve never had any control over it. In my adult life, it happens in pretty much every meeting I attend. I can usually manage to have somebody talk at me for about 10 minutes before I start to fade out. My eyes glaze over and the head-bobbing will start shortly after that, then I’m gone. I’ve managed to control the yawning for the most part, at least. But there’s a switch that flips in my brain during periods of non-interaction and I can’t seem to do much to stop it. I try to doodle or take notes to stay with it. That helps, but sometimes I don’t do a good job of that, or looking like I’m doodling comes off nearly as badly as nodding off does.

I also have a hard time reading books. After 10-15 minutes of that, I’m usually out as well. I learn primarily through doing things. Having somebody sit near me and tell me what to do step-by-step and allowing it to go through my own fingertips is highly effective. Absorbing instructions via text book is harder, but expecting me to learn by lecture just doesn’t work for me. I’ll do my best not to embarrass myself or my department by falling asleep in important meetings with VP’s present, but I really can’t control it. Sorry.”

I also fall asleep reading or doing repetitive tasks. This has been a pretty big problem for me throughout my life. I have countless embarrassing stories of things that have happened because I fell asleep at an inopportune time. Many of them happened when I knew I would be highly visible and was on my best behavior. I even fell asleep playing little league softball while standing in the outfield a few times. I resembled a turtle on its back until I woke up with a start. I’ve just accepted it as part of how I am. A part I don’t like very much, but part of me nonetheless.

I thought about it a lot today after I gave that explanation for the thousandth time. “What if there’s something I can do about it, after all? I’m sure I’m not alone in this. Maybe I can get some help and change it.” I’m already wondering how this is the first time that thought really occurred to me in all these years. Seems silly and obvious. Regardless, I’m glad that I had that thought at all.

I’ll be eligible for benefits next month. I’d like to get the ball rolling now in hopes that I can actually get started on treatment soon. I don’t know what it is yet. But the fact that there’s something going on with me that affects so much of my life at least deserves some examination.

If this is something that you or somebody you know has dealt with and you have any treatment suggestions in Columbus, OH, let me know in the comments section, email me (jacki890 at yahoo) or ping me on Twitter (@jacki890).

I have a coworker who has almost identical symptoms to mine. I talked to her a lot today. She has narcolepsy and has been treated for it the past few years and said that medication has made a huge difference in her life. As soon as I get benefits, I’m going to talk to my general practitioner about having a sleep study done on me to work toward diagnosis and treatment. I’m pretty excited about it. Now I just hope I can get a benefits package that will cover things like this. It would be amazing to finally get a handle on these symptoms.