A Weekend in Portland, Maine

We moved to Portland! Well, at least for the month of August. We made it in late Friday night after the actual most dramatic afternoon of trying to capture the bears. 5 hours of pure, unadulterated torture, complete with fire and urine. Story to come.

After sleeping in on Saturday, we decided to go out for breakfast.  It was raining and hotter than Hades and places in Portland don’t have air conditioning *blink* because heat waves like this are relatively rare. We started our morning at The Bayou Kitchen, and after putting in our name, stopped in at the local (air conditioned) art store. A cool 15 minutes later, the hostess at The Bayou Kitchen called to tell us our table was ready. D and I both got breakfast sandwiches with spinach and tomatoes; I chose bacon with a side of rice&beans and he chose andouille sausage with a side of home fries.  They were served PIPING HOT and on a day that was only a little bit cooler they would have been PERFECT, but mine had me breaking out into a sweat.

Post-breakfast, we headed home and waited for a pause in the rain before going out for a run around Back Cove. It was our first proper run together in maybe three years and it felt so good to be doing one of our favorite things. We alternated between running and walking every quarter mile (the cove is really well marked!) which is what I need to do to ease my knee back into things. I can already tell that my lower joints are going to be squeaky but I feel ready to train properly for the first time since the accident.

After showers we went to the grocery store before a visit from my in-laws. They stopped by with cookies and granola from Big Sky Bread Company which was on point!

D and I had plans to go bowling Saturday evening but I was so wiped out after the run that we stayed home to play with the bears and order Grubhub.

On Sunday morning we took the 9:15 ferry from Portland to Peak’s Island for a half day of kayaking with Maine Island Kayak. We got off the ferry at 9:45, hit the public library for a bathroom break, and were on the water by maybe 10:15-10:20ish after handling the procedural “shtuff” involved in a tour like this.

There were four couples – three of us celebrating our anniversaries! – of varying skill levels.  The company’s owner, Joe, was a FABULOUS tour guide, and upgraded D’s kayak to something more suited to his skill level.  D and I expressed an interest in history and birding and Joe made a point to talk to us individually about each.

Our first stop was a wreck off the coast of Diamond Island where there was an osprey’s nest, Eider ducks, and a slew of cormorants.  I decided to be the last person paddling through the wreck because I wanted to have time to take photos.  Unlike the fauna on my recent trip to the Galapagos Islands, these birds were incredibly skittish.   I didn’t take that into account and by the time I was paddling through, all but one of the maybe eleven cormorants that had been drying off their wings had hopped back in the water to get away from our flotilla.

After the wreck, we headed back towards Portland and the Civil War era Fort Gorges.  You guys this place is SO COOL.  We paddled past a slew of gulls and cormorants to pull our kayaks up onto a beach.  Joe gave us some safety recommendations (it’s dark inside and if you can’t see the floor, there probably isn’t one) and then we set off while he stayed with the boats.  The stonework is incredible and we could see the tracks that the soldiers installed for the canons.  We climbed the pitch black stairs – using our camera flash for light – to the top and were rewarded with a clear view of the harbor. After half an hour of exploring we got back on the water.

We kayaked to House Island and then across to Peak’s Island before paddling down the shoreline back to Maine Island Kayak.

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We pulled our kayaks ashore, picked up our valuables, and said goodbye to Joe before searching out a lunch spot.  We put our name in at the Cockeyed Gull – Joe’s recommendation – and Shipyard Brewing Co and then wandered around to pass the time while we hungrily awaited a table, ultimately choosing the Cockeyed Gull. We split fish and chips and the grilled scallops, and I devoured the watermelon (with wasabi dressing!!!) salad. Wasabi, and all things horseradish, is one of my favorite flavors and my absolute favorite spice!

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We finished lunch just in time to catch the 2:45 ferry.  We got great seats on the way back and the view pulling into Portland’s ferry terminal was perfect!  After landing we went to Shipyard’s tasting room.  They had fun beers and sodas available for tasting, but the tasting room was in the back of the space, behind the gift store, and completely windowless.

We stopped at a corner grocery store for dinner supplies before hopping in the car and heading back to the bears.  We have a few more kayak outings planned for the month and this has me eager to get back out on the water!

Scenes from a Christmas in Manhattan

When we looked at the forecast we realized we needed to wear ALL of our clothes.  We had this fantasy that we were going to wander up 5th Avenue, looking at the holiday window displays, with a hot chocolate in our hands.  But the reality is that our hands were too cold to take out of our gloves and our snot froze inside our noses.  Glamorous, right? This was the second year that D and I spent Christmas day in Manhattan and the coldest by maybe 20 degrees.

We had 5pm dinner reservations at a Lebanese-Armenian restaurant called Almayass so we didn’t want to eat a big lunch.  After stopping by Rockefeller Center to admire the tree, Mom found a fab diner on 6th Avenue, just as we were turning into human popsicles, and so we stopped into the Astro Restaurant.

We planned our route south to Almayass over fries and hot beverages which is when we found the National Museum of Mathematics.  If you know me at all, you know I started frothing at the mouth as soon as this popped up on google maps.  And since I only seem to hang out with folks who get as excited as me about things like Math museums, it became our obvious next stop.  On the way down, we stopped to see the Macy’s windows which I have to say I like at least one order of magnitude more than the Saks windows.  I found the Saks Disney theme to be grossly white and just generally too homogenous, heteronormative, etc.  It’s 2017, not 1940. Step it up. Know what I mean?

And then the National Museum of Math! *swoon* It was like a giant adult (and kid) playground with math in motion. Getting the chance to ride a bike with square wheels was my high school dream come true! There were puzzles and games and interactive physical experiences that made abstract math concepts come to life.  We spent two hours in Utopia before heading to our Christmas feast.

Walking into Almayass was like walking into a giant hug.  The decor was classy, quirky, and oh so welcoming. It was busy enough to provide that exciting, bustling atmosphere but not too crowded as to compromise the experience.  Our menu strategy was to order all of our Armenian favorites, and by the time we did that we only needed to order one actual entree to make it a complete meal.  We ordered the classic hummus, tabouleh, dolmas, and lentil soup.  Y’all, the lentil soup was to die for.  And then we ordered the lamb.  I think it’s weird to walk you through exactly what we ordered and how long it took us to eat each course, so unless you comment and tell me that would make your day, I’m going to end this post by saying, WOOHOO CHRISTMAS IN MANHATTAN WOOHOO!

Love,

The Narcolepsy Princess

My Word of the Year

Last Year

2017 was a year of adventure and abundant creativity, but also one of intense anger, confusion, and betrayal.  My New Year’s Resolution was to reduce food waste and hell if that didn’t fade out of view by the second grocery shopping trip of January.

And then narcolepsy. I tried to fight against my labels but spiraled into denial when I compared myself, my accomplishments, and my potential to that of a fictitious non-narcoleptic version of myself.  Spoiler alert: she has better time management skills, organizational skills, more wakefulness, and OH YEAH! She doesn’t exist.  I felt betrayed by the medical profession and the three neurologists who gave me a full workup and declared that I was perfectly healthy.  I’ve fantasized about dropping burning piles of poo on the doorsteps of many doctors; not just those three neurologists, but also the know-it-all general practitioners, allergists, cardiologists, psychiatrists, psychologists, etc. who didn’t have the guts to say “Something’s wrong, but I don’t know the answer.”  Apparently I still have some anger to work through.

The Diagnosis threw me into an identity crisis and I think that crisis ironically came from me realizing that I knew more about myself than I thought I did.  I was finally able to look at my narrative about myself and see clearly the passages that others had added.  I wasn’t lazy or unmotivated or stupid.  I was clinically sleepy beyond reason which is what my body had been telling me and what I had been telling the doctors.  Over the years I let them convince me that I was wrong, and now, with The Diagnosis in hand, I had control.  For the first time in my life I let my creativity take the reigns and I launched an accessories brand – sleep&sparkle – that challenged me in ways that I hadn’t been challenged before, but also used many of my strengths and fed a passion for sartorial expression which I kept deep inside of me as soon as I graduated from high school.  Somehow, The Diagnosis put me in touch with the deepest parts of myself and empowered me to believe that I deserved to be happy and to create a life doing something that I loved.  My husband and grandma had been telling me this for years, but until The Diagnosis, their words might as well have been in a foreign language.

This Year

In 2018 I’m ditching the resolutions and opting for a WORD.  A word that will be the lens through which I filter my thoughts and actions.  A word that will push me outside of my comfort zone while also pushing me in the direction I want to go.  My word for 2018 is EMBRACE.  I fought it for weeks in December until I finally caved and realized that my resistance was a serious indicator of how much I needed this word.  I was hoping for something bigger that set off fireworks and felt exceptional like BRAVE or FIERCE or PRESENT or INQUISITIVE, but I kept coming back to my frustration with my sleepiness, my inability to accept good things that were happening to me and because of me, and my fear that I would always be angry and bitter about The FUCKING Diagnosis.

“Why am I so mean to myself? Why can’t I accept who I am, what I am, how I am?  Why can’t I EMBRACE this beautiful thing called life that I’m working so hard to make but can’t seem to appreciate?”  Hence, EMBRACE.

The work of this year is to EMBRACE all of these things and so much more.  It is to EMBRACE my weaknesses and failures but even more importantly my strengths and successes.  It is to EMBRACE my anger and bitterness while also EMBRACING my creativity, my enthusiasm, and that I am more than my story and my circumstances.  It is to EMBRACE the opportunities and the relationships that make my heart happy.  It is to EMBRACE me, the way that my grandma and husband did years ago.

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Bonne année, my friends!


What are your resolutions, words, ideas, as you enter 2018?  Or do you opt for nothing at all?

On Hallucinations

“A hallucination is a fact not an error; what is erroneous is a judgment based upon it.”

-Bertrand Russell

#tbt to #Cologne in May. I was rounding out my first month on Xyrem and experiencing (relatively) dreamless, restorative sleep for the first time in my life. The hallucinations only started disappearing more recently. Before diagnosis I would go about my day with strange notions of what to expect and weird interactions with people that I couldn’t explain. My dissertation advisor would ask me if I’d gotten the email she sent me and I would be completely confused – um, of course I got your email and I responded to it yesterday morning. I had the tactile, visual, full sensory experience of typing out the email on my phone except that it never actually happened.

People with narcolepsy can experience hypnagogic (falling asleep) and hypnopompic (waking up) hallucinations that scientists think are related to semiconscious REM sleep. My hallucinations are rarely violent or frightening (as outlined in many descriptions of narcolepsy) but they are always disruptive and disorienting.

I recently found this quote from BR and it hit me in the gut because it so perfectly captures why I was in a constant state of confusion pre-diagnosis.

Thrift tip: Forget the numbers

Hi friends! I’m jumping in here with another tall tip / thrift tip.

Don’t look at number sizes at the thrift store. Have an idea of your body’s shape and scout out clothes that match what you know about yourself.

I would have passed by my all time favorite thrifting finds – a Talbot’s pea coat, Express jean jacket, and badass steel toe cowboy boots – if I had been hung up on numbers. My pea coat is a PETITE! You guys I’m 6 FEET TALL. But when I saw the coat on the rack I knew the darts looked like they were in the right place for me and the length looked like it would hit just above my knees – PERFECT!

Bonus: my peacoat doubles as the perfect travel blanket!

On the other hand my jean jacket is an XL. I have thrifted clothes in every size from XXS to XXL.

Rocking my thrifted Express jean jacket (from Goodwill) with a thrifted dress from the German thrift store, Humana, in Cologne, Germany.

Women’s sizing has changed a LOT in the last 20-30 years: a size 10 in 2000 might be closer to a size 2-4 now, or vice versa.  And that’s fine!

Your body is fabulous EXACTLY the way that it is. Don’t fall prey to the nonsense that is spouted by the fashion industry. Know yourself, know your style, and rock the hell out of it!