Issue 22
Waking up, a new section about ice hockey, small rain, the sentence, and Janet Sobel
My mast cell or status migraine flair, which started in August has finally cleared and I am back to baseline (that’s more than five months, that I am going to look at with ZERO judgement, zero judgment). Per usual, it was an emotional rollercoaster. I have decided to categorize my flairs as a “hibernation state” and the state I am in now as “waking up from hibernation”- it always takes a minute to readjust to baseline, I always find it disorienting and frustrating. Disorienting because I am not sure what exactly to do with myself and when the next flair will randomly hit. Frustrating because I am feel as though I have to start at square one - I can not emphasize how much work I have done to figure our what I want to do with my life and how I want to spend my time. Definitely more than the average bear. Then- to have my body completely fail me and be in an almost constant state of reevaluation. I think many of you who live with a life altering chronic illness know exactly what I mean.
BUT this time I came up with a PLAN. I am going to establish written instructions on how to “wake up from hibernation” and I am going to use my newsletter as a template and a way to reestablish my connection with the outside world. Troubleshooting life. I came across this quote by the dancer Neil Marcus1 - “Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art—an ingenious way to life” and nothing has resonated more for me at this point in my life.
Once again I have put this newsletter together over the period of a few months. I hope it takes you our of your bubble a bit and also makes you laugh a bit. I have added a section on NHL since it has taken up so much of my time since October and I have been enjoying it so much. Don’t worry- no blood - unless you want some good fights - because I have some. The breadth of this newsletter is just getting bigger and bigger.
hockey
Since I have been spending a significant amount of my time watching ice hockey, I thought I may as well throw it in the newsletter- add even more randomness. I think even people who are not hockey fans can appreciate a good play and/or goal- especially if it involves some figure skating that was achieved with this goal by Calgary Flame’s forward Nazem Kadri back in mid-December.
I now have two teams that I closely follow, the Seattle Kraken (obviously) and the Minnesota Wild - I have no clue why I picked up the Wild. They do have the best social media- i will add the one they posted the last time they played the Kraken because it is hard to beat.
I have to say how nice it is to cheer for and celebrate something every few days - whether it is a goal, a save, or a win. I am sure my neighbors think I am bonkers.
currently reading
Small Rain by Garth Greenwell. I was curious about this book since it is about how illness can greatly alter your life. It is a beautiful book and it has recieved rave reviews, but by the time I finished it I felt more jealousy than anything else for the main characters situation- mostly around his gorgeously loyal partner and his ability to purchase his dream house- even though things do go wrong, but who doesn’t face some level of adversity. There were moments that I could really relate too specifically the ones when dealing with the dismissiveness of a medical provider and the structure of the book was very interesting. I know this review is brief and there are many holes - but I felt as though this book more of a romantic notion of what it is like to have a life altering mystery illness and not what is actually like to live with one.
The Stationery Shop by Marjan Kamali. I loved this book. I had been meaning to read it for a long time. It is a star-crossed love story between two teenagers who meet in a stationery shop during the summer of 1953 in Iran - during a time of great political chaos and violence. The book covers a lifetime. Kamali does an excellent job creating a colorful tapestry of the promise and tragedy of Iran in the 20th century. The story is wonderful and the characters are even better.
The Sentence by Louise Erdrich. I found the beginning a little confusing, but once I got past the first 50 pages I really enjoyed it. Erdrich is another writer who is a master at character development, I think some of you might remember my love of Kate Atkinson’s brilliance at this. Like Atkinson, Erdrich is able to create a hole complex person and I believe that is something that can only really be done with age and experience - it is a working theory. Seeing the world through the protagonists’, Tookie, viewpoint is a true lesson in empathy, because that is something that a great novel is able to do- be an exercise in empathy- you get to inhabit her character. Tookie is a flawed character, a portrayal of a good person who made a very stupid decision in her youth and who shows an immense amount of growth throughout the story. Erdrich is also able to succeed at portraying the complexity of the development of relationships and the different stages that they go through depending on the situations that the individuals are faced with.
All That Glitters: A Story of Friendship, Fraud, and Fine Art by Orlando Whitfield. I am a sucker for any memoir about a friendship. I am also obviously an avid spectator of scandals, big or small. I also have a great deal of schadenfreude for the insanity that is the contemporary art world of the big spenders. This book has all of the above. This definitely takes place on a different planet from the one I live on.
something short to read/watch/listen to
Book Riot podcast interview with NYT book editor about how they put together their 100 most notable books and how they pick their 10 best books. I found it very enlightening.
I have been listening to a lot of the podcast, Search Engine- they investigate random questions that people have trouble finding the answers for through regular internet and AI searches. I really enjoyed the one about the mysterious swimming pool at Buckingham Palace.
I just watched the 2017 Judd Apatow and Michael Bonfiglio documentary about the Avett Brothers, May it Last: A Protrait of the Avett Brothers. I was lucky enough to see the Avett Brothers at the 2010 Newport Folk Festival and they blew my socks off. The documentary does a really fantastic job portraying the uniquely healthy relationship between Seth and Scott Avett, how much of themselves they put into their music, the kindness of everyone involved in the band, and how they show up for each other. I streamed it on Prime and I think you can also watch it on HBO/Max.
If you want to do some spectating of family vlogger culture, An Update on Our Family is entertaining and unnervingly unsurprising - or maybe for some of you - unnervingly surprising.
This piece done by the Kraken Hockey Network (KHN) about the video coaches is very fun.
An auction of some of Leonard Cohen’s things.
Enjoy this SNL throwback with Kristin Wiig at her best
some more visual enrichment
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Found in What Can A Body Do? How We Meet the Built World by Sara Hendren, which I did not end up reading - but it does look very interesting.
Maria learned to cook when I routinely had 6 week long migraines but there was no name for them back then. I'm so happy you're feeling better.
Patsy