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!

Put on your oxygen mask before assisting other passengers

Dear Diary,

This is what he was elected to do. This – these judicial appointments – is what I was most scared of leading up to November. This is how he will Make America Great Again. And this is how 40 years of progress roll off a cliff.

I’m signing off of the news for now. Sure, I’ll be on social media, compulsively checking fashion bloggers on Instagram. But I give myself permission to step back. I have important things to do that nurture my mind and soul and I can’t connect to those parts of me when I’m reading every rumor about the goings on of Gilead.

I’m not going to be as productive this week as I planned. I need to re-prioritize (yoga, time with friends, snuggles with bears, editing my talk for Project Sleep) and refamiliarize myself with my Trump era guidelines and that needs to be enough. It is enough.

I do believe I will get through this but I also think I will have to fight tooth and nails for what is right, because there aren’t always good people on both sides. What I know now that I didn’t in February, 2017 is that I need to put on my own oxygen mask before assisting others.

Love,

Michelle

The Bear Bulletin: Vol 7 (Deluxe Edition)

This is part of an ongoing series in which I round up a week’s worth of bear photos along with some thoughts on my photography.  You can find previous volumes of The Bear Bulletin here.


I played with our 16mm lens this week and had more fun shooting around than I have in a few months.  Perhaps due to my subjects?

The photos of Misty Bear and Nimbus were taken under our dining room table and the bears were so patient while I stuck my camera just inches from their perfect little faces.  The light was so interesting and I really enjoyed editing these photos.  I played around a lot with the warmth of some of Misty Bear’s photos to get more of a sepia feel. The afternoon had a very comfortable, lazy-day, feel to it.  I love my little ladies!

Are you ready for the “deluxe” part of The Bear Bulletin?  Take a deep breath and make sure you aren’t completely cute-d out.  Because your heart might explode.

You’re welcome.

Happy Caturday, friends.

Xyrem Vol. 6: One Year

I took my first dose of Xyrem 365 days ago TODAY.  Am I better? YES! Am i still sleepy? Yes.  About 2 months ago the reality of my narcolepsy set in: managing my sleepiness is, and always will be, something I work at every single day.  You might think – “Well, yeah. You have narcolepsy.  That’s how this works.”  But I really thought that Xyrem – this narcolepsy wonder drug – was going to be something that I ramp up over the course of a year, and then I would get to the therapeutic dose and be a normal, wakeful human.  That is so far from the reality.

This last year has been a shitshow.  I’m talking “let’s take graceful photos of each other under water” kind of shitshow. Like…where you work so hard to get things to come together and then the best photo from the series is the one above.  I missed birthdays, sales tax deadlines, and still haven’t sent my best friend her wedding gift. But I let myself sleep without guilt and I took time to mourn the years I lost and the life I’ll never live. I’m free in a way I never was before I had a diagnosis and a drug that gave me dreamless sleep.  My hallucinations around sleep are drastically diminished and the same thing goes for my disturbing dreams.  These days, waking up from nightmares (like the one I had two nights ago about dogs that drown humans) is indicative of missing the alarm for my second dose (I.e. I spent too much time in REM sleep – which is my narcolepsy brain’s default – rather than Xyrem sleep).

I think that one of the best ways to describe the impact of Xyrem on my life is as a patronus.  Before Xyrem, I tossed and turned at night, and woke up from horrendous dreams only to spend hours slipping in and out of hallucinations.  It was a veritable prison.  Now when Xyrem hits me, I go to sleep and I generally wake up 2-4 hours later feeling good.  It wasn’t until my REM started getting under control that I realized how negative of an impact the nightmares and hallucinations actually had on me.  Xyrem, I will be forever grateful to you for that.

What Xyrem hasn’t given me, I’ve gotten from my community.  This diagnosis pushed me to open up about my disease to my family, friends, and ultimately the world wide web.  I made incredible friendships through this blog and met people in the online chronic illness community who inspire me and cheer me on.

It turns out that living with narcolepsy is more of a marathon than a sprint.  Perhaps thats okay.  We all have our battles and mine is teaching me to be present.

Visit my narcolepsy resource guide here, and read all of my posts about sleep here.

March for Our Lives

This week’s Bear Bulletin is postponed due to the March for Our Lives.  I am eager to share photos from Austin, and interested in hearing your experiences at marches around the country.March for Our Lives Austin TX

To be honest, this is the first march I went to, I stayed for an hour to take photos, and I missed the speeches. Marching for 3 hours is just not something I can do with narcolepsy. But I’m finally doing well enough on my meds that I can be at the start of the march (on time) and stick around for an hour.

I’ve beat myself up about it and been so ashamed that I’m not pulling my weight. But I’m letting those feelings go. I can show up NOW! I can take and share photos that preserve and amplify the movement.

Photos from marches over the last year are what gave me hope when I was home in bed, groggily scrolling through the ‘gram at 1pm on a Saturday. I hope that these photos fuel your enthusiasm, if something is keeping you from participating the way that you want to.

So here we are! I spent most of my time at the march covered in goosebumps with my eyes watering, as I felt true hope for the first time in months.

The youth in our country have mobilized in a remarkable way and it was an honor to walk alongside them, to see them owning their power, and to see them stepping into their duty as members of a democratic society.  Below are portraits from the march.  They are portraits of kiddos, high schoolers, teachers, grandparents, Texas men, mothers, among so many others who I approached about photographing them and their signs.  There is a fierce, fiery, hope and determination visible on these faces that comes from the frustration of being silenced and vulnerable.  Enough is enough.

Photos in the gallery below show signs without faces.

Did you go to a march? Did you participate in the entire march? What did you think of the speeches? If you manage chronic or mental illness, how does that help or hinder your ability to participate in sociopolitical movements?