The Last Day of 2023.

This will be a short post because I just wrote a long post on the winter solstice and other holiday celebrations. Josh actually wrote a blog post today. He has revived the blog he began eleven or twelve years ago, and I'm happy to see it. He wrote about the practice of imposing meaning. We had a discussion yesterday about what I called "planting seeds." We have different ideas about what that means. Take my annual tradition of selecting a very special calendar for the new year. I take this seriously; I am choosing the images that will light the next twelve months. This year, I have used an Annie Stegg calendar, which is beautiful. I have her Phantom of the Opera prints on our living room wall. Her art is enchanting. 

Anyway, back to planting seeds. Josh said that I choose a calendar because I am affirming (promising) that I will "be here" for the next year. I think he meant that as a choice to be alive for another year. But that's not how I think of it. I'm well past setting up future mile markers to pull myself through another day or week or month. Josh says that these deadlines or obligations are effective for him. But I buy the calendar because I want to send my future self beautiful art to reveal each month for the next year. I want to send reinforcements ahead, supporting myself in advance and giving myself something to which I can look forward. I've been thinking a lot about that, especially since the winter solstice. Celebrations and festivals plant seeds, events about which to get excited, events which will mark (and, as Josh wrote, giving meaning to) the passage of time. It's like leaving water at intervals in the desert for future travelers, and one of those travelers is you. 

I recently found a quotation I wrote down at some point. I don't remember the source or the exact words, but it was something like I stored up more love than I thought I could ever possibly need. I feel like I've done that over the last three years, and I think it is why I have survived this year. It has been a hard year. I've tried new things. I've had my heart broken more than once. I've grieved and not known how to grieve. I've not known how to move forward. But I've moved. And now, we're on the brink of 2024, and I continue to store up as much as I can, even if I'm only (or not even) breaking even right now. 

New Year's Eve may be an arbitrary marker, and if I stay up to see midnight, it won't be on purpose. I think Josh and I have stayed up for just a couple of our nineteen midnights. But I will gather any form of love and any form of joy I can find if it is healthy. I will set it out like water and store it up like blubber and furs.

So, I embrace the coming of the new year, and I ponder the word that I'll sling around my shoulders like a cape (and around Josh's shoulders, too, as we've decided to share a word) for the rest of the winter and whatever comes during this revolution. I'll write about it tomorrow. 

The Winter Solstice and Such.

On December 15, I finished my grading and turned in my grades. I finished my first semester back in teaching. I did it. Despite enormous personal and medical obstacles, I made it. But I didn't really celebrate that day or that weekend because the boys weren't done yet. 

On December 17, Sunday, I finally saw Bruce. We hadn't seen each other in over a month because I'd been so sick. But that afternoon, we met at Barnes, where he found me in among the journals. Bruce bought me a peppermint mocha frap; I hadn't had one in years. We talked for a long time in the cafe and then walked around. I had decided to buy magazines. I bought five, two of them Christmas themed. I planned to read a lot of magazines during the break. I also bought a tiny Penguin Modern book, Create Dangerously by Albert Camus. I thought Josh and I could read it, and then, I could keep it in my purse. My pocket copy of Writing Down the Bones doesn't fit in my current purse. I also spilled Shirley Temple on it, but that's okay. We found a couple of great-looking horror books that I wanted us to read together, and I tried to remember their titles. I ended up buying another slim book called The Art of Frugal Hedonism. It has no price mark. But spending less and enjoying everything more sounded good. I just figured I'd skip over the inevitable sections on marijuana. We inhaled the candles, so lovely and so expensive. And I pined for a $20 Paper Source silver and gold star garland, but I didn't buy it. I did buy a pair of holiday book socks because how could I not? I'd seen them online, and I looked for them specifically.

On December 19, I picked Oliver up just after noon. I had, just that morning, packed Christmas cards and $20 bills in Oliver's backpack for his teachers. I figured that they'd probably just want cash for gas or whatever more than any silly gift I could choose. Oliver was in good spirits, but I worried, knowing it would be a long time before he went back to school. We went home and hung out for a few hours, hoping Josh would get off early. I finished listening to Wintering by Katherine May, a book I discovered when I was very depressed in the winter of early 2021. I read it as an E-book and later bought the hardcover because it became one of my favorite books. I had recently used an Audible credit for the audio book as well, thinking I might enjoy rereading by listening. Josh had begun the E-book as we've finally figured out how to share our Kindle libraries. He's actually found several books to read among my books.

Josh did not get off early. We went to pick him up at 4. I had asked if we could go to Kohl's, where I had an order waiting: a set of pink and gray velour star pajamas. My grandmother used to buy me Christmas Eve pajamas every year when I was a child, and it became one of my favorite holiday traditions along with complicated gifts in stockings (no candy canes for our family). Josh ran in and grabbed my PJs, and then, we went to Barnes. I was glad to be back so soon. Josh got me an iced peppermint mocha, got Oliver a giant chocolate chip cookie, and got himself a Diet Coke. While he was doing that, I went back to the gift displays. I was delighted to find that much of the holiday decor (alas, none of the pretty Christmas books) was on sale, 50% off! I picked up the now-$10 star garland and a now-$7 mini tin Woodfire candle. I brought these back to the table along with a running book for Josh to peruse. I found that he had gotten me a slice of cheesecake as well! So, we had a little party there in the cafe, and I decided that I really must get to bookstores much more often. That evening, Josh pinned the star garland above my Cinderella display. It will stay up all year. I decided that day that I would have an iced peppermint mocha every day until Christmas.

Just two days later came the winter solstice. A whole chapter of Wintering is devoted to the winter solstice, primarily to pagan rituals and celebrations. May actually went to Stonehenge to see the sun rise! I am not a pagan, but the frequent Druid festivals do appeal to me. So, what did I do? First of all, Josh made his excellent banana walnut chocolate chip muffins. At some point, I had my iced peppermint mocha. The best places add chocolate shavings to the whipped cream. 

I set aside my Diamine Inkvent calendar (one of the coolest creations ever) and fountain pens after I finished my Italian celestial journal. I found a journal that I stickered perhaps two years ago as a special Christmas journal...lots of snowflakes, trees, presents, and even Christmas fairies inside. I forgot to use it last year. But I started it on the solstice, a Compoco journal in deep blues and gold with an hour glass, a tiny sail boat moving toward a rising sun, and the words Time to Wander. I thought it was a perfect journal for the end of the year. I started it with a Pentel Hybrid Dual Metallic pen, silver with light green glitter. It made me think of icecaps. 

I wore my purple hoodie and my favorite black star coatigan, which was extra soft as I'd just washed it. It's a little ratty already (I got it last year), but I love it anyway. Josh took Oliver to the trampoline park, and while they were out, I watched Little Women, another Christmas tradition I have decided to establish. This year, it was the Greta Gerwig version, in part because Bruce was going to take me to see Wonka. I automatically loved Timothee Chalamet because he was Laurie! That version is not linear, so it doesn't have as much of a Christmas feeling as the Winona Ryder or BBC films do. Still, I was happy to rewatch it. I think Mom and I saw it on Christmas Day the year it came out. I'm always happy to rewatch a Little Women or a Jane Eyre. In fact, I asked Bruce to watch the BBC's Little Women earlier this year. 

The Pumpkin Vanilla Creme candle in the living room burned out, so I replaced it with a 'Tis the Season candle, which has a good bit of cinnamon scent, my favorite. The candle in the study burned out too (Merry Cookie), so I replaced it with a Holiday candle, which has an even stronger cinnamon scent. The Vanilla Bean Noel candle continued to burn in the foyer. 

When the boys got home, we drove to Arnette Park to see the Christmas Town light display. The whole enterprise took over an hour, and it's something I'm satisfied to do just once. But it was pretty impressive, massive arches of lights, twinkling trees, and so many animated characters. We listened to our Christmas playlist, which includes each of our favorites (Aaron Neville and Michael Crawford for me) and the James Taylor album we discovered together. Oliver didn't seem to mind the outing, but he was very sleepy when we got home. 

When the boys went to bed, I chose and decorated my Christmas journal for next year! It is a purple Papier journal (fountain pen friendly) with stars, my name, and Stardust Wishes on the cover. Papier journals are expensive (about $30), but they're personalized. I try to buy a few each year if I can. 

After that, I took a hot Twisted Peppermint bubble bath (yes, I have kept Bath & Body Works in business). It wasn't a perfect day. I felt enormous sadness at one point, and I cried more than I ever have in front of Josh. But unlike my recent mixed episode (see the sister blog, Water in a Wineglass), my emotions that day felt like a variety of healthy, genuine feelings. That was refreshing. I stayed up late writing, but it wasn't compulsive...I just felt like writing into the night.

The next day, Bruce and Corey took me to see Wonka. It was pretty great. I had popcorn with far too much butter (the employee really lay on the dispenser). I had an unpleasant moment when a man ran into me and groped me, and that shook me. But I was determined not to let it ruin touch, public spaces, or crowds for me. So, I hugged the guys goodbye, and instead of going home, I drove to Barnes. Yes, again. I got myself coffee and a caprese sandwich, which I brought home. But I made myself look at the journals again before I left, just to ground myself in what I love. 

I had expected that we wouldn't be able to see family for Christmas because of my continued illness, but we went to Charlotte anyway. And though I caught another cold (I was just getting over one), it was a good time. And Josh got me an iced peppermint mocha on Christmas Eve, right before the Starbucks closed. 

Winter Break Goals!

 I just finished my first semester of teaching since 2014! I turned in grades last night, and since I'm an adjunct, I now have a break of almost exactly a month. I'll have some work to do, wrapping up fall and prepping for spring, and I'll have tutoring prep. But I'll have a lot more time and a lot more time with the boys. So what do I want to do with this time?

Winter Break 2023-2024 Goals:

1. Finish final 6 art/design/fashion books of the year (for a total of 25 this year).

• At Home with Books

• Audrey

• Coco Chanel

• Christian Dior

• Joie

• Sixth book

2. Put away books.

3. Put away Christmas presents.

4. Wear gift socks.

5. Use that gift of Josh’s.

6. Thoroughly clean bedroom.

7. Put away all laundry.

8. Keep up with laundry.

9. Reorganize kitchen cabinet.

10. Read/listen to Wintering again (preferably with Josh).

11. Finish Sharing Loving Abundantly in Special Needs Families.

12. See Girl from the North Country with Josh.

13. Walk around downtown with Josh.

14. Go to Pan with Josh.

15. Get Oliver’s hair cut.

16. Put up new magnets.

17. Make at least one art journal Christmas spread.

18. Make at least one art journal bookstore spread.

19. Buy Wallflowers/soaps during semi-annual sale?

20. Finish all fall magazines for 2023:

• Bella Grace

• Real Simple

• Enchanted Living

• Art Journaling

• In Her Studio

• Oh Reader

• Elle Décor

• House Beautiful

• Other magazines

21. Start winter magazines:

• Real Simple

• Bella Grace

• Oh Reader

• Bella Grace Cozy

• Other magazines

22. Write 10 blog posts.

23. Type all new poems.

24. Type all workshop responses.

25. Respond to prompts.

26. Attend December 28 workshop.

27. Attend additional $10 workshops?

28. Round out reading list.

29. Pay for duotrope membership.

30. Update duotrope. 

31. Make fried rice.

32. Make pesto pasta.

33. Make rice and beans.

34. Read two children’s lit books.

35. Read Santa by L. Frank Baum to boys.

36. Finish Holly Claus.

37. Read Susan Branch’s Christmas.

38. Revive chart.

39. Finish Poetry Will Save Your Life.

40. Clean out nightstand.

41. Start walking.

42. Clean out bookcase.

43. Put away journals.

44. Number journals.

45. Start artist’s dates (week of December 17).

46. Go on artist’s date (week of December 24).

47. Go on artist’s date (week of December 31).

48. Go on artist’s date (week of January 7).

49. Use Strand tote bag.

50. Document gifts in journal.

51. Document gifts in art journal.

52. Wrap gifts.

53. Chapter 3 Creative Recovery.

54. Chapter 4 Creative Recovery.

55. Chapter 5 Creative Recovery.

56. Plan 112A.

57. Plan 112B.

58. Clear work inbox.

59. Catch up 2023 quotations.

60. Quote Goodbye, Flicker.

61. Read Bring Down the Little Birds.

62. Eat dessert for breakfast.

63. Eat muffins.

64. Make Dec/Jan budget.

65. Stay within Dec/Jan budget.

66. Reserve Airbnb for Todd marathon.

67. Drink a lot of iced peppermint mochas.

68. Update notebook list.

69. Update wish lists.

70. Finish Inkvent Calendar.

71. Work on Better Than Before.

72. Catch up with Libby.

73. Listen to audio books daily.

74. Listen to Donna Lewis.

75. Start January playlist.

76. Finish Sex Ed.

77. Start Fall of the House of Usher.

78. Encourage Josh to complete step 1.

79. Read one Christmas gift book.

80. Have Christmas with Bruce.

81. Give gifts.

82. Restart yoga.

83. Prep new charts.

84. Read Best American Essays 2023.

85. Read Best American Short Stories 2023.

86. Read Best American Food Writing 2023.

87. Read Best American Poetry 2023.

88. Read Best American Science Fiction & Fantasy 2023.

89. Reach 117 books for 2023 (to beat 116 last year!).

90. Read 8 books in 2024 before January 16.

91. Assessment?

92. Upload gradebooks.

93. Dye hair black.

94. Get haircut.

95. Put away gift wrap.

96. Go to Barnes 3 times.

97. Catch up library books.

98. Return library books.

99. Hide more notes for Josh.

100. Finish Linotte.

101. Do daily couples cards with Josh.

102. Find the last note from Josh.

103. Enjoy Bruce’s fake fire.

104. Read Matthea Harvey.

105. Shower daily.

106. Get well!

107. Discover new poets.

108. Search for journals.

109. Begin poetry collection 3.

110. Begin poetry collection 4.

111. Wear favorite sweaters.

112. Go to holiday reception with Josh.

113. Get sunshine.

114. See The Waitress Musical.

115. See Wonka.

116. Watch more Key & Peele sketches.

117. Use writer’s medic bag.

118. Clean out old purse.

119. Use 50% of presents.

120. Finish Books and Libraries Poems.

121. Nap or sleep in several times.

122. Sticker 2 journals.

123. Put away Oliver’s presents.

124. Drink more water than anything else.

125. Burn candles daily.

126. Finish Italian celestial journal.

127. Finish Christmas journal.

128. Clean out teal basket.

129. Pay radiology bill.

130. Get car inspected.

131. Pay car taxes.

132. Make February budget.

133. Lose 5 pounds.

134. Reread/annotate first half of The Girl Who Drank the Moon.

135. Celebrate winter solstice.

136. Go to online writing workshop with friends.

137. Choose word of the year for 2024.

138. Write end-of-year blog post.

139. Write word-of-the-year blog post.

140. Finish “Essential Reading” blog post.

141. Finish listening to Gingerbread.

142. Finish The Source of Self-Regard.

143. Visit with Mom.

144. Visit with Dad.

145. See James.

146. Wear green boots.

147. Wear black tall boots.

148. Wear Uggs.

149. Wear fuggs.

150. Enjoy Christmas trees.

151. Drive around to see lights again (winter solstice?).

152. Read FLB.

153. Measure belly and thighs.

154. Lose 3 inches.

155. Wear pretty green coat.

156. Go to Sephora.

157. Find out Oliver’s TA’s name (the shame!).

158. Get cash for teachers’ gifts.

159. Give a gift to Oliver’s teachers.

160. Stay within grocery/snack budget.

161. Order Gatorade for Oliver.

162. Get lunch items for school.

163. Read poetry aloud to Oliver when we’re alone.

164. Take photos of presents for blog.

165. Reorganize tote bags (house purses, as Josh calls them).

166. Keep utility bill under $300.

167. Eat breakfast each day.

168. Clean house January 5.

169. Clean house January 12.

170. Update E-mail signature.

171. Start Field Guide to Everyday Magic.

172. Clean standard pens.

173. Fill standard pens.

174. Clean specialty pens.

175. Begin Agnes Gray with Josh.

176. Organize and use new page flags.

 

Living Next to Narcolepsy.

I type this on my phone at I lie in bed with my legs across Josh's. It's after 11. I've taken to blogging when I'm lonely. Somehow, I don't get as much comfort from my own company in my journal right now, or I'm just too...something...to delve into it.

An hour or two ago, I said to Josh, "I don't know if I'm going to be needy or just sullen."

He said, "You can be both," and that's probably the best response he (or anyone) could have given.

Now, even though I'm sick (the fever and exhaustion came back today after yesterday was fever free); even though I'm drained; even though I've taken Trazodone, NyQuil, and two Xanax (yes, my doctor allows it on occasion); I think I am far from sleep.

Beside me, Josh has been courting sleep for two hours. He's really gone now. For a while, he could drift back into consciousness long enough to answer a question or respond to a request.

Me: Tell an always statement and a never statement.

Josh: Always and never. I will always house you in my heart. *sleeping* A never statement. *sleeping* Never. *sleeping* I'll never stop trying to be who I think I can be. What about you?

Me: I will always do everything I can to be sane. And I will never regret loving you.

Sometimes--no--often, when he's falling asleep, Josh jerks and startles. His muscles practice strange reflexes. He clenches his fists. He sticks his fingers in my ears or presses my eye sockets. He shoves me away. It's all a trauma response and the weirdness of narcolepsy, and I'm mostly used to it, though last night, I did say, "Ow! You punched me in the eye."

Tonight, I said, "We carry heavy burdens." 

Josh said, "Yes," and went back to sleep. 

It's true in general.

Dysthymia, a diagnosis probably masking MDD and PTSD. 

Narcolepsy.

BSD, probably type I, though the doctors diverge.

Panic disorder.

Autism.

intellectual impairment.

Emergent BSD.

Severe anxiety disorder.

And the way we began.

And the rest we brought in: coping mechanisms, trauma, abuse, neglect.

And the debt.

And the mistrust, the hurt, the damage on both sides.

And it's true right now.

The recent discoveries.

The justified bad evaluation.

The uncertainty about next semester.

The chaotic end of this semester.

The strep, the mono, the cold.

The near-constant, month-long fever.

The sprained ankle.

The thin support (though not always).

Our isolation in this place we think of as home.

I reread part of a 2007 journal last year. Even then, I wrote about his hand on my back, stopping its caress, suspended as if frozen, "and nothing, no shifting, no sigh, no throat clearing can start it again." It was years before he was diagnosed.

His touch has always been a lifeline for me, even more than I ever realized until this year. It grounds me. It soothes me. It helps me forgive. And at some point, earlier some nights than others, it stops. He might stroke the back of my leg once in a moment of semi-consciousness. His fingers might move to randomly massage wherever his hand his fallen, my ribs, my face, as if it's my shoulder or neck. It's almost instinctual, but then he goes still. His hand falls; he drops his phone on my head. He's gone.

I recall a few nights when he's sat up, usually when I woke from an intense nightmare. Once or twice, I've asked him to stand up and press his palms to my lower back, where I've kept my tension since labor. But it is like diving deeper when he's drowning. He is sleep starved at all times, and his dense medication wears off by night. We don't do anything that requires us to drive at night: I can't see in the streetlight and headlight spangles, and he can't stay awake, regardless of caffeine and loud death metal music and water dousing and open windows and self-slapping.

Some nights, I E-mail him my thoughts and questions, getting them out of my head and gaining some peace that way.

He told me I was cute with my nightguard in. I'm so glad he found it on the floor. The bite marks in the hard wax are deep. I've been clenching for days and nights, and even though the insert makes me feel like I'm drowning, my jaw and head hurt less, and my crowns may not come loose.

It's late. No one's around. Josh's hands are crossed over his chest as if he's been prepared for burial. He grinds his teeth, a terrible metallic whine. He often moves one hand to cover his eyes, dragging the fingers down his face as his arm gives out. His eyes roll back mid-sentence, mid-thought.

In the morning, he may not remember anything he's said, I've said...maybe even from hours before he started succombing to this mistress who calls him away every night, this master who makes no exceptions. Sleep. It eludes me and consumes him. 

But now, I feel that trembling, that shimmering of thought that defies metacognition. And I feel the joy and relief in noticing that my thoughts no longer make sense. Soon, I'll be gone too. The wonderland sense overtakes me. My phone falling on mj ⁿ a sL!,,

An Afternoon with Autism and Intellectual Impairment.

A good bit of my time goes as follows.

Oliver: Mama wanna sit down. *herding me to the living room and, after appropriate meditation, bringing me his tablet* Wanna watch kebbin aye bupette.

Me: Uh...*typing in Kevin Thomas Train as my best guess* Kevin's Cranky Friend?

Oliver: No!

Me: Kevin the Steamie?

Oliver: Steamie!

Me: Okay. Here you go. *settling in for the duration and hoping I won't get thirsty or something before the chain of videos ends*

5 to 10 minutes later when the video ends, or, if he's really tense, after about 30 seconds of the video

Oliver: Wanna put the phone back?

Me: *canceling video and turning off tablet* Okay.

Oliver: Phone back!

Me: *trying a different inflection as it has to be exactly right* Okay.

We sometimes go back and forth like this several times. Then, he walks off, returns, and restarts the cycle.

This can go on for 2 1/2 hours. I've gotten a little better at bringing rations and something to do. If Josh is at home, one of us has to stay in place while the other can briefly leave to make dinner or go to the bathroom. This is what repetitive-restrictive behaviors look like. It's not a lack of discipline. It's what he needs to regulate his nervous system. Meltdowns (which result if we wander off or can't figure out the video) are not tantrums. They're more like seizures. 

If the video cycling restarts every 30 seconds or fewer, it's literally impossible to do anything else. You can't read a poem. You can't write a full sentence. You can look at your work E-mail, but you can't do anything about it.

Reminder to self: Diesel's Ghostly Christmas is a two-part episode. The full show is not on YouTube. It is on Amazon Prime Video for free: Thomas the Tank Engine Season 19, Episodes 17 and 18. I just researched this for ten very stressful minutes.

And now, I need a nap. I've only been able to write this because he's watching several minutes of video at a time.

Alive.

I don't really feel tired. I mostly feel mentally drained. But I do feel some hope about my health. It seems like mornings are hard, but afternoons are easier. Even evenings are better than they were. Bruce says I should ease into my days. I've always been at my best in the afternoon anyway. Everything is amplified. 

I finally feel better enough physically to be afraid of everything else.

But I know this much: I will not end up in the hospital. I will keep up with my meds. I will take care of myself. I will seek support. If Josh is too broken, if Mom and Bruce are too busy, if Melissa is too distant, I'll find others. I will call Sheila if I have to. I will take people at their word. I will call Nanna. If Josh is passed out from narcolepsy and I'm alone, I will find someone to talk to. Jessie has agreed to be my friend. Let's support each other, she said. Megan is my friend. 

I will build a life. If I can't teach here, I'll teach somewhere else, or I'll tutor a bunch of kids. I'll keep my Medicare. We've gotten Medicaid for Oliver before. We've gotten SNAP before. I'm trying to look at all the worst things that can happen and believe I can survive them. I have survived a lot this year, more than anyone knows about.

I need to stop clenching my teeth. I need to print out my December chart. These first two days, if nothing else, I've written five pages. That's a start.  I read six or seven poems last night. I'll read more before I go to sleep. I've worked hard. I'm getting healthier. What I cough up is clear now. No headache, no fever today. Maybe tomorrow will be another fever-free day after a month at the boilibg point.

I will make it through this year, and I will shine next year. I will store joy in my cheeks. I will drink iced peppermint mochas every day if I need to. I will burn candles and light lights long after the holidays. I will wrap Oliver in light.

I may not be able to hold this whole family together. I may not be able to provide. But I will be present and well, even if parts of my body are failing. I will be alive.