Cerebral Palsy / Managing Spoons in 2020 / Multiple Sclerosis / Spoonie Challenges

Managing Spoons in 2020, featuring Jamieson Wolf

Editor’s note: As promised, this Fall season brings us a new series called Managing Spoons in 2020. It’s been a heck of a year for many of us, so I decided to ask fellow Spoonies how they’ve been handling it.

ID: Deep purple background. Text reads: Managing Spoons in 2020 Week Three: Jamieson Wolf. (The zeros are the tops of spoons.
This week we are featuring author Jamieson Wolf, who’s a long-time SpAN contributing author.

Always lovely to have you on the Spoonie Authors Network, Jamieson! Can you please introduce yourself for those who might be new to this blog?

Thank you for having me! I’m the author of quite a few books. My newest ones are Love and Lemonade (which won LR Café’s Best of 2019 Award for Best GLBTQ+ Book) and Little Yellow Magnet, my memoir about my diagnosis and experiences with multiple sclerosis. I’m also a painter who makes abstract works with acrylic paint. I was born with spastic cerebral palsy and was diagnosed with relapse and remitting multiple sclerosis eight years ago.

What has it been like navigating through 2020, and how have the events of the year affected you?

I’ve dealt with a lot of different emotions. COVID-19 has brought on depression, insomnia, and a lot of brain fog. It’s also showed me what truly matters and that there are times where I feel normal, you know? I’ve just felt so damn sad and so damn tired. I’m more exhausted than usual and my body feels heavy; and yet there are moment where I’m laughing or finding small joys in seeing the sun set or rise. There is so much fear out there in the world, and I’m trying not to add to it. I’m taking things the only way I can: one day at a time.

Some folks have found it difficult to read or write this year, but I’ve noticed you’ve been firing away at the keys. What written works have you been working on?

I’ve actually had a horrible time reading. I normally read at least a book or two a week and now it’s taking me months to finish anything. Case in point? Midnight Sun came out on August 4th. Now, had this been pre-pandemic, I would have had that book by August 8th, at the very latest. I only recently finished the book, turning the last page on Saturday September 19th.

Thankfully, I have my writing. Since I’ve been unable to lose myself in the books I read, I’ve been able to lose myself in my writing and my painting. I finished one long book, The Queen of Swords that came in at 101,539 words. It’s the story of Jackie, who falls asleep on a plane only to wake in a dystopian world that is familiar to her. I’ve also been working on The Book of Lost Souls and I just passed the 50,000-word mark last night. It’s a tale that concerns Xavier Garcia, a disabled wizard with more power that he knows and his best friend Felicia, a trans woman who has become more powerful since she became who she always was.

People who follow you on Instagram and Facebook know how much you love taking photos of your cat, Anakin. (Apparently, he’s not gone to the Dark Side yet, although author and SpAN contributor Stephen Graham King might not be convinced.) Do you think the presence of an animal soothes stresses and brings joy at an unsettling time like this?

I know this is true. We adopted Anakin in January, and my husband Michael and I are so thankful. He’s been such a loving presence in our lives and has been thrilled that we are both working at home. We’ve often talked about how different it would have been had we not adopted Anakin. Whenever I just need a bit of joy, I step away from what I’m doing and play with Anakin, whether that be by throwing springs for him to chase or playing hide and seek with him while he’s in his pet tent. There is just something about looking after an animal who only wants love, play time, treats and love that makes the world easier to deal with. Having him is almost like having a therapy cat. Anakin makes my heart happy and you need that kind of thing right now.

What ways do you cope and manage spoons, these days in particular?

I try as much as possible to listen to my body and not to do too much at once. I take baths to sit and read whenever possible and to keep my stress levels down. I also meditate every day and this helps a great deal. It centre’s me and keeps me (a little) sane. I can’t nap, it messes up my sleep at night, but I really just try to listen to my body. I work out three times a week and those work outs help with my pain levels and the amount of spoons I have. Ultimately, if I don’t feel like doing anything, I don’t and I sit and try to read my book. I try to be kind to myself too, remembering that the world has gone to poop, but it doesn’t mean that my health has to suffer.

You strive for (nontoxic) positivity. What nuggets of wisdom bring you out of the dark forest, when it beckons?

There was something my mother told me when I was younger and first dealing with a double diagnosis of a critical depression on top of a critical one. She told me that if you want to be sad, be sad; if I want to be angry, be angry. She said that I had to allow myself to feel all my emotions and acknowledge them. I had to make room for them so that I could let them go. I still try to think that way today and those word have been a comfort to me as I’ve grown, both physically and emotionally. Regarding my positivity, I figure that even if you’re having an awful day, there is something to be joyful about… but if there isn’t, that’s okay too. There will be, even if it doesn’t seem like it now. Positivity is like on of my superpowers. As long as I have positivity, acknowledge my fabulousness and my ever present supply of sparkles, I’ll be okay.

How can people find out more about you, your work, and where to connect with you?

You can find me at my website, on Facebook, Twitter, and Instagram. I also have a blog, Two Steps at a Time, where I write about living with cerebral palsy and multiple sclerosis.

Thanks so much for sharing your experiences with us!

Jamieson Wolf, author

Jamieson Wolf is an award-winning, number one bestselling author of over sixty books and writer of Two Steps at a Timea blog about having multiple sclerosis and cerebral palsy. In 2019, he released his gripping memoir, Little Yellow Magnet, followed by Love and Lemonade (the third book in the Lemonade Series), and his short story, The Descent, appears in the Nothing Without Us anthology.

He is an accomplished artist who works in mixed media, charcoal, pastels, and oil paints. He is also something of an amateur photographer, a poet, a perfume designer, and a graphic designer.

Jamieson currently lives in Ottawa, Ontario with his husband Michael and their cat Anakin.

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