the light streaming through the trees in the Barbour Woods;
Okay, I know this one is a little weird. But lately my body and mind have been craving functional forms of fitness and shoveling snow will give me that fix every single time.
I’ve also been thoroughly enjoying walking Annie through the snow-covered woods for the same reason. It’s such a great, blood-pumping, muscle-engaging workout to walk through the ankle-deep snow.
And last, but not least, these mashed potatoes:
I made a low fodmap vegetable stock recipe the other day. You throw a bunch of vegetables like leeks, the green parts of scallions, carrots, parsnips, parsley, and potatoes in a big pot with water and let it simmer for an hour. Then the recipe says to strain the liquid and discard the vegetables. Heath questioned the part about discarding the vegetables. I told him, “that’s what the recipe says.”
Yet, when the time came to actually discard them I looked at the wonderfully soft potatoes and thought, surely I should mash these instead of throw them out. Which is exactly what I did. And, oh, my, potatoes! They are the most delicious mashed potatoes I’ve ever eaten, a sentiment also shared by Heath.
So that’s where I am these days. My sleep is improved enough that I find mashed potatoes marvelous. Life is good.
This winter has been nothing short of wonky for Norfolk. December ended with warmer temperatures than usual, a lot of rain, and barely a dusting of snow. January also started off the same way. The second week of January changed everything – a few inches of snow and some chilly temperatures!
Just how chilly? On Tuesday, January 11th the temperature was -8°F with the wind chill. That day also happened to be one of my scheduled walks with Annie. I asked Annie’s mom how long she thought Annie could be out in the cold. Annie’s mom said she was more worried about me.
Pish posh! I replied (though not quite in those words). I believe that because my formative years were spent on an ice-skating rink, my blood carries a small percentage of ice in it.
I was not at all worried about myself being in the chilly temperatures, especially when I wear the proper attire.
In the case of Tuesday’s temperatures, appropriate wear meant hat, gator, gloves, hand warmers, fleece-lined pants, LL Bean socks, Xero winter boots, and my Columbia Omni Heat coat that is filthy dirty but I remain steadfastly committed to because I only paid 75 cents for it while volunteering in Churchill, Manitoba.
Annie and I set off with determination to complete our full loop of the Swamp Trail in the Barbour Woods. With blue skies that stretched for miles and a glorious sun for company, I felt confident we could do it.
And I was right!
By the end of our walk, my brain was awash in all the feel-good neurotransmitters – serotonin, dopamine, oxytocin, and endorphins. When I returned Annie home, I reported that our walk was “the most invigorating thing I’ve done all year.”
Since the year was only 11 days old, I’m not sure I impressed anyone.
But I did come up with the idea that this walk with Annie will be the benchmark for my experiences in 2022. Anything notable that happens, I will compare it to how I felt on that cold winter’s day with Annie in the woods. By the end of 2022, I’ll have a list of my best moments.
A few weeks ago, I led a TED Talks discussion group using Candy Chang’s talk, Before I die, I want to…. You can watch the TED Talk here.
Two of my discussion questions were:
How would you fill in the blank — Before I die I want to __________?
How would your answer change if you knew you only had one year left to live? What about one week? One day?
A lively discussion ensued. One gem of wisdom shared by a participant was that a year was a luxurious amount of time. How grand to know you have a full year ahead of you!
Juxtapose that idea with the basic premise of Oliver Burkeman’s Four Thousand Weeks: Time Management for Mortals, whereby the average human lifespan is only four thousand weeks. Four thousand does not seem nearly enough.
Since the reality is we really don’t know how much time we have left, I take time every year to reflect on my own death. This practice helps me ensure that no matter what happens, I know what’s important to me, which in turn, helps me make decisions in both the short- and long-term for living my best life. Previous death meditations inspired me to quit my tenured position as an associate professor of psychology, to volunteer for seven weeks at a science center in sub-Arctic Canada so I could see polar bears in the wild, and to recognize that my perfect day includes time for rest, self-care, being with loved ones (and a dog), some play, and some productivity.
This year, I reflected on my death while at a winter solstice sunset meditation program at Naumkeag. Naumkeag is a beautiful house in Stockbridge, Massachusetts, set on a rolling hill with the Berkshire Mountains as its backdrop.
Picture taken on Autumn Equinox in 2021.
Picture taken on Autumn Equinox in 2021.
Having been there before, I knew Naumkeag is a magical place. What made the night even more magical is the house and grounds glowed with thousands of colorful lights as part of their winter lights festival. I could not have asked for a more perfect place to reflect on my past year and find inspiration for living my best life in 2022.
2021 was a hard year for me. The grief of losing family, friends, and dogs in 2020 carried over, as did the uncertainty of the pandemic. Add to that a terrorist attack on the US capital in January, a constantly mutating virus because not enough people are vaccinated, and a debilitating sleep disorder that has been getting progressively worse for years, which, in my opinion was so stressful it reactivated a shingles infection in my body in August, and I’ve got a year that really sucked at times.
And yet, because I’ve taken time in the past to consider my time and mortality, I also experienced a pretty wonderful 2021. I have never been more in love with Heath than I am today.
He is an amazing teammate, best friend, and husband. A lot of times when I panic that I’m 44 and if I live to the same age as my dad then I only have 30 years left, the panic is because I feel like that is not enough time to love Heath. Since there is literally NOTHING I can do about my eventual death, my way forward is clear: just love Heath to the best of my ability each and every day.
Last year, I also had a dog fall asleep on my head! Best. Day. Ever.
In those moments, as Fergus snoozed away, I thought I might explode with joy. I also thought I might never be able to move again, because I couldn’t bear to wake the little guy up.
Knowing how dogs have a special place in my heart, I mostly kept up with my twice weekly walks with Annie. Even in my darkest days of sleep and health challenges, being with Annie in the woods was a wonderful tonic which helped me keep going.
2021 is also the year that I learned how to write a novel on my phone. In my work at the Norfolk Library, I led a program on habit formation using James Clear’s Atomic Habits book. From his insights and practices, I finally let go of wanting to be a person with a habit of jumping out of the bed first thing in the morning. That kind of habit is impossible for me when I feel severely sleep deprived and depressed due to narcolepsy. Instead I used the techniques and information to develop a habit of writing on my phone, which makes a lot of sense considering how often I use my phone and how my phone is almost always within arm’s reach. Six months and over 37,000 words later, I now have the first draft of a middle grade novel that is just waiting for revision.
I also spent a lot of time querying agents in 2021. I received several requests for full manuscripts or more work. Although I was not offered representation, I did receive personalized rejections, some with encouragement to keep going. It’s not what I hoped for, but I’m certainly not giving up now.
In reflecting on 2021, one area of my life other than sleep also seemed out of balance: my work life. When I quit teaching in 2016, I never wanted to work full-time again. The hours and stress of working full-time did not seem possible while also trying to prioritize my sleep health.
In the beginning of 2020, I worked 12 hours at the Norfolk library and 10 hours for the Congregational Church. That combination seemed perfect for my personal and professional goals. By the end of 2020, I was working 35 hours a week — 25 for the library and 10 for the church. I needed to work 25 hours at the library so that after 1 year at those hours, I would be eligible for health insurance. During 2020, our market place health insurance monthly premium went from $60 a month with state assistance to $1,069 a month with no assistance.
Perhaps if I didn’t experience downward-spiraling narcolepsy symptoms in 2021, I may have been able to sustain a 35 hour a week work schedule. Unfortunately, my sleep health was so poor in 2021 that I knew I couldn’t continue working this way. I made the difficult decision to resign from my position at the church. I will still volunteer for various church initiatives, since they have such a wonderful presence in Norfolk and beyond. But I now have the discretion to say no when I am simply too tired.
Which brings me to 2022 — How do I want to live differently, if I knew 2022 would be my last year?
The answer to that question came almost immediately while I was at Naumkeag. On that cold dark Night, we were led through a rainbow tunnel of lights.
During that walk the words colorful creativity popped into my head. I knew the instant I heard myself say those words that my creativity is missing an important component. So much of my creativity goes to writing: I write for my job at the library; I write for the Norfolk Now monthly newspaper; I wrote for the church. I also write in my free time in hopes of being a traditionally published author someday.
What I don’t do is use my creativity simply for fun. I don’t create for play. I don’t create simply to create. There is always a purpose. That stops in 2022.
This year, my year of colorful creativity, I will prioritize using color in creative ways. I never have considered myself a visually artistic person. I think that’s an important point. I am choosing to spend some of my time on artistic endeavors that have no higher goal, other than to simply create something colorful.
I find this idea both exciting and terrifying. I feel excited because it’s something new and different. It’s terrifying for a few reasons. One, I still think of myself as a minimalist and I’ve already bought some art supplies which creates cognitive dissonance with my minimalistic values. So that’s something I’m reconciling as I go down my colorful creativity path. Two, I know how precious time is. It’s terrifying to give up some of my writing time or otherwise free time to play. I don’t have to worry about giving up time with Heath because we know have art dates every Monday.
We’ll see how it goes. I decided to get a head start on my year of colorful creativity and made before the official start of 2022.
I call it Polar Nights. Here’s to more colorful creativity in 2022!
The pandemic ends. Everyone who can gets vaccinated and everyone masks and socially distances until there’s no more virus transmission and not enough hosts for mutations.
That’s it. That’s the list.
I am so tired of this pandemic.
Traveling in Tennessee this past week made me realize this pandemic is never truly going away. Maybe 2 out 10 people wore masks, social distancing doesn’t exist, and the number of derogatory comments I heard about masks and vaccines broke my faith in humanity.
Heath helped build my faith back up somewhat with a well-timed and well-intentioned pep talk. But still. Those were some dark days. Some of that darkness still lingers.
Thankfully, I also currently have 24-7 access to one of the best antidotes to faith-in-humanity destruction:
Fergus is, of course, the best Christmas gift ever. This tree is at my mom’s house.
That’s right! Fergus is back with me for the next two weeks. Thank goodness. I’m sure my heart will be brimming with light, love, and licks in no time.
Merry Christmas to those who celebrate! To everyone else, warm winter wishes!!
Yesterday I made a Christmas wreath at the Great Mountain Forest’s wreath-making event. To my pleasant surprise, my wreath did not end up looking like a whale, as most of my art projects do.
My friend Shelley made the mermaid on the right. See my whale on the left.
In fact, what I made looks down right like a proper wreath — luscious greens of fir, pine, spruce, and mount laurel, berries, and some other plants I can’t remember right now.
THIS IS NOT MY WREATH! THESE ARE JUST THE LUSCIOUS GREENS.
I attended the morning session with a friend. Our plan was to get there an hour early and go for a quick hike before the 9:00am start time. Our part of the plan was a success; we did indeed get there early. The hiking part was thwarted because the trail we planned to hike was closed for hunting. Big signs said KEEP OUT, so we did. GMF commended us for that decision because if we had been shot, they could have also sued us.
Instead, we walked down the road, petted some horses, kept on going, and about half an hour later turned around and hiked back up the road. The return hike kicked my butt as we had to walk up approximately five hills (give or take a hill).
Once the wreath making got going, I found myself delighted with picking my greens, twisting the wire around the metal rim, and making sure the materials fanned out the way I wanted. I couldn’t believe how easy it was.
Bonus: the barn smelled like a fragrant pine forest.
Here is my finished wreath:
Here are some of the other wreaths from that day:
I can’t wait for next year!
The only downside to wreath making was that I couldn’t bring Fergus (yes, I asked). I’ve been taking care of him for these last two weeks. I’ve probably taken hundreds of pictures and created several Canva graphics. This is my favorite one:
Although now that I think about it, I created this graphic, too, and it also doesn’t look like a whale. How exciting! Maybe my whale period is over. Time shall truly tell….
My purple whale in the back; turtles made by elementary school students I was tutoring.
I’m glad it’s Thanksgiving this week, because it gives me a ready-made topic to write about: Top 10 Things I’m Grateful for This Year.
My husband, Heath. This year has been another challenging one, particularly with sleep issues. Heath is a constant source of unconditional love and support. The last time I struggled this much with my sleep, I was single. I eventually improved, so I know I have it in me to stay the course with my health as a single person. But I’m incredibly grateful I don’t have to.
DOGS! Speaking of unconditional love and support, dogs are also up there at the top of my list. Dogs bring me such joy! I can’t imagine my life without them. This point leads me to …
The people who let me love their dogs. This will be my first full year since 2013 that I did not live with one or more dogs. It’s been an adjustment to say the least, and I still find myself tearing up every now and again when I think of my furry friends I’ve lost along the way. So an extra special thank you to those people who ask me to take care of their dogs and love them like they’re my own.
My mom. She is one of the most generous people I know. The only way my mom could get even better is if she got a dog.
My best friend, Arlene. I met Arlene while on sabbatical in Chapel Hill, NC, in 2014. Arlene is almost 40 years older than me, and that doesn’t matter in the slightest. We understand each other, and every Thursday I call her. Sometimes we don’t chat, and I just leave a message. But we always know to expect a phone call on Thursdays at 11:30am.
My BFF Michelle. Michelle and I have been friends for maybe 17 years now. We can’t really nail down the date of when we went from being grad school acquaintances to good friends. The pandemic, however, changed everything. We experienced a Frien-essance (the friend version of a Renaissance) this year through Zoom and that’s one of my silver linings of the pandemic. Also shoutout to Beth, who often joins us on our Zooms. I’m grateful my friendship with her has gotten deeper this year, too.
My TPEP friends. These are the friends I made when working for the Tobacco, Prevention, and Evaluation Program way back in the mid 00s when I worked in the Department of Family Medicine, UNC School of Medicine as a research assistant. I doubt I will ever have such a dynamic and fun group of friends at work. We stay in touch a few times a year and I love them all SO MUCH!
My imagination and creativity. These are my two greatest natural gifts. Because of my imagination and creativity, I am never at a loss when writing a story. In fact, I often have too many stories to write, and then have to choose which ones to write and which ones to let go. As a first world problem, I’ll take it!
My mentors. There are some people in this world, such as Dr. Al Forsyth and his wife Peggy, and Dr. Adam O. Goldstein, who believe in me no matter. They’ve each contributed their own way to the person I am today.
My improving sleep. Friends, I am cautiously optimistic in telling you that my narcolepsy medicine is working. I am no longer waking up every morning experiencing post-traumatic stress from my dreams. I no longer need a nap at 8:30am and again at 4:00pm. I am not heading straight to the couch after I wake up. I feel so different these mornings as of late, that sometimes I don’t even know what to do with myself.
As I was writing this list, I realized that Top 10 is too limiting. I immediately wanted to make it a Top 20, then Top 50. For brevity’s sake, I’ll stop here. Kinda. Because now I’m going to give a few honorable mentions: My niece, who is brilliant and creative, my writing group, who is AWESOME, the Norfolk Library, who provides AMAZING health insurance even though I only work part-time, my productivity club, where we provide unconditional support to each other, Ruth, who reads my blog regularly and is one of the nicest people you’ll ever meet, Dottie, who gives the best hugs in Norfolk, and Jeannine and Jeff, who continue to make me laugh.
There are so many more people and things I could list. I’m really going to stop now. At least for now.
I’m on day two of a treatment for narcolepsy. As I wait and see how much the medicine helps, I continue to celebrate small wins. Figuring out how to create a video of Annie on our walk last week with a particular song playing in the background is top of my list for small wins that equal REALLY BIG FEELINGS OF ACHIEVEMENT.
I’ve noticed that lately I’ve been a glass half empty kind of person. The first night I tried this medicine, which I took before from 2008-2015, I had the following thoughts: what if I die? What if I stop breathing? What if it makes me lose my mind? What if it doesn’t work. I worked myself into such a state of anxiety, that I decided I wouldn’t be able to fall asleep without wearing my ApolloNeuro Touch Therapy Device.
From their website:
Apollo Neuro is scientifically sound, wearable touch therapy that you wear on your ankle or wrist. Apollo’s silent, soothing vibrations speak to your nervous system, telling you that you’re safe and in control. Developed by neuroscientists and physicians, it’s a safe, non-invasive stress relief tool for adults and children, without drugs or side effects.
I had invested in the Apollo Neuro to help my sleep, which I can’t say that it did. But I have found it to be soothing in certain situations. So I slapped it onto my wrist and curled into the fetal position.
I woke up a few minutes later thinking I was having a panic attack because my whole body was shaking.
Except it wasn’t really. It was just the Apollo Neuro. Unfortunately, the way I contorted myself resulted in the device vibrating directly against my chest.
The next night went much better, and I certainly had less dramatic thoughts. But these other thoughts never once crossed my mind: What if this the best thing to happen to me? What if my sleep completely improves? What if everything starts getting better?
I suppose the good news is that now I’ve realized I’ve been glass half-emptying it, I can switch my thought process. Part of me would like to understand why I became a glass half-empty kind of person and part of me doesn’t care about the why.
Then there’s the other part of me that says, isn’t it more important that the glass is refillable in the first place?
I’ll save these questions for another day. In the meantime, here’s to the best night of my life! Hopefully.
Fall is moving by quickly in Norfolk. Although maybe that’s not entirely accurate, because we’re still having warm, sunny days. What we’re also having in between are some really wet, rainy days. Thanks to those days, the bright orange, red, and yellow leaves lasted what felt like a nanosecond this year. At least I got to spend some time with my favorite farm animals, as I typically do every fall.
I feel incredibly grateful to have a friend who lets me soak up the restorative power of being around animals in nature. It’s a tonic for life that everyone should be able to access. I wish it were enough to get me safely across the sea of narcolepsy symptoms that continue to ebb and flow in my life. It’s not, but this time with Hammy, Frankie, and Sheldon, does help me stay afloat a little easier.
Hopefully by the next time I write on this blog, I’ll have started a new/old narcolepsy treatment. It worked wonders for several years and then it didn’t so I stopped taking it. I’m hoping my body will have reset enough that it will work wonders again. Wish me luck!
I don’t want to alarm anyone in Norfolk, but there’s some sort of creature hanging out on the Swamp Trail in the Barbour Woods.
This creature enjoys splashing and swimming. Every so often, she jumps out of the swamp and shakes off her coat all over innocent bystanders.
If you’re lucky, maybe you’ll get to see her. Be forewarned: encounters with this creature result in moments of pure joy and lots of smiling. I mean, honestly! Just look at those ears!
It moments like these that I hold onto because the narcolepsy continues. Of course I’m still sleepy.
Today, however, I am also hopeful.
When I spoke with my sleep doctor last week, we agreed to try a medicine that worked wonders for me for seven years. Overtime, its effectiveness diminished and the side effects became more pronounced. I’m hoping because I haven’t taken this medicine since 2015 that my body and brain will have completely reset itself.
Now, the challenge is getting the medicine. It’s only available at one pharmacy in the country and there’s a lot of paperwork and verification that needs to happen first. So far, I’ve had to email the pharmaceutical company a copy of my marriage certificate and license since the last time I took the medicine I had a different name ,and then on Friday I received notice I have to fill out a new enrollment application.
So, I wait.
In the meantime, Norfolk is on the brink of being a cornucopia of fall foliage. Now’s the time to get outside and enjoy it. Even better, bring a dog!
Sleep is not going well. Since sleep is the foundational support for so many other things in life, I am struggling.
For the last two years, I’ve been actively trying different solutions. None of them have had a marked improvement. In July I started a new medicine. At first there was hope. Then when my doctor increased the dose, I had every psychological side effect listed on the pharmacy insert, including the very scary ones. I’m lucky I didn’t end up in the hospital.
I suspect the stress of that situation is what kicked off a round of shingles. I had shingles before when I was 38. Shingles, of course, comes with its own host of problems, and the fallout from this time around has made the sleep situation worse.
When I went for a physical on Thursday, the nurse did a depression screening as part of my vital signs. You know you have a good doctor’s office when they’re this thorough. I scored in the “severe depression” category.
I explained that these depression screenings don’t have discriminate validity between depression and narcolepsy. So, yes, I may be severely depressed, but the narcolepsy came first.
I am now so tired that there is a sea of tears living behind my eyes that can break free at any given moment. Even the smallest crack can release a torrent. Some people get anxious when they’re exhausted. Some people get angry. Some people eat a lot of cupcakes. I cry. I’m not sure if that’s better or worse than the other options.
Part of the problem with an invisible disability is that oftentimes I look fine. And a lot of the times I pretend I’m okay even when I’m not. Someone even recently described me as “bubbly.” Those times are usually an act. Unfortunately, we live in a society that ties health insurance to employment and so I play along because I feel I have no choice. I can’t not go to work every day I’m tired because then I’m just not working and would need to apply for social security disability.
The acting takes a lot of energy and stamina, although sometimes pretending I’m fine is less work than telling people the truth. People with narcolepsy have a saying, “My tired is not your tired.” So when I say I’m exhausted, a lot of people sympathize because they think they know what it’s like. It’s not the same. Research backs me up on this fact. When a person with narcolepsy wakes up from eight hours of sleep, the sleep is such poor quality and the deficiency of the neurotransmitters orexin or hypocretin in our brains is so great that we feel like we are on day three of sleep deprivation. Every. Day.
Unless we’ve found a treatment that works for us. I have yet to find that treatment.
We also spend more time dreaming, in bright, video colors, often with nightmarish or traumatic plots. It’s not unusual for a person with narcolepsy to wake up with post-traumatic stress from their dreams. Brain imaging studies have shown that the same areas of the brain are activated whether you are acting in real life or acting in a dream. For people with narcolepsy, our brains get no rest from that activity.
Even our more mundane dreams are exhausting. This weekend the Norfolk Foundation is hosting the Haystack Mountain Book Talks. Even though I have yet to read any of the books, a few weeks ago I dreamt I was in charge of the program, which had all kinds of logistical problems in my dream, and then I sat there and listened to every single presentation. Can you imagine the brain power it takes to create multiple hour-long lectures of a book you’ve never even read?
Explaining all these truths about narcolepsy is something I like to do when I’m in “sleep evangelist” mode. But now when I’m tired. These conversations are difficult to have.
Also, there are times when I’m actually okay even through the tiredness. Sometimes even joyful. Those times usually involve being with people I love, a dog, being in nature, or perhaps talking about a book or something else that still holds my interest through the sleep deprivation (though there’s not that much these days I find interesting).
So I can’t at all blame people for thinking I’m okay because sometimes I pretend I am and sometimes I actually am and all the other times I’m not. Maybe I should get three versions of the same t-shirt that says: Okay, Not Okay, and Pretending to Be Okay. On the back it would say “Don’t Ask.”
I have an appointment with my sleep doctor on October 5th. I’m afraid I’m putting too much hope into this appointment. But I don’t really know what else to do at this point, except keep doing what I’m doing and wait for October 5th.
Special shoutout to Heath who has been incredibly supportive and loving during this time. I know I could manage without him because I did for years. I’d rather not.