Tag Archives: Life

25 years.

Take a minute and look at this picture. Really look at it.

This was taken at the reception party after my brother’s wedding in 2014.

What you are looking at are two terrified people.

She knew something about her was eroding. She felt broken. In new ways every day. She saw it. We both did.

We didn’t know what. Only that something was terribly, terribly wrong. There was a malicious and mean ghost haunting us. She was struggling, even in this picture, to ignore it. Suffering silently in terrible ways to appear ‘normal’ to everyone on the outside.

We hadn’t danced in public since our wedding.

She had been recruited to fill in for one of the bridal party at the last minute. Her terror over what could happen in front of people in that church is something I will never understand how she overcame.

She forced herself to be there for our new sister-in-law, absolutely terrified. The reality of any number of accidents during the ceremony, and her humiliation and being mortified and embarrassed if any of them did take place, gave her panic attacks throughout the day.

In that picture, she is exhausted. She is terrified. She is fighting a brain that will not cooperate.

And we had no idea why. The two people in that picture are lost in a storm they can not see, name, or know how to fight.

That was taken in 2014. It would be two more years of confused fear before we would see her MRI and know what was changing her. Two more years of misunderstanding, of falls, of exhaustion, of cognitive fragmentation, of accidents, of shrinking worlds, of robbery of her capacities, of tremours, and of tears. She would lose her ability to drive, robbing her of her independence and making her feel more like a burden with every day that passed. She would doubt her ability to be a good mother, a good wife, and a good person, as her disease would chew away at her abilities and their life.

Every day was becoming a fight in a long war, and she did not know she was in it. Neither of us did.

We were simply trying together to hang on.

I was in the same room with my father, who had not recognized me that night when he had first seen me. My brother had to tell him who I was. My mind was on fire with threat. My children were meeting their grandfather for the first time. In this picture, my hyper-vigilance was cranked to the point of fracture.

There is a lot going on in this photograph.

Fear. Doubt. Loss. Grieving. Exhaustion. Two people lost in a fight they can’t name and may not win, because they don’t know how.

In that photograph, she was supporting me as much as I was her.

Those two people are holding each other together in equal measure, surrounded by the dark.

Full of doubt about how the next years would unfold.

Six years ago. We’ve been managing the storm ever since. Once we could label it, two years later, once we knew what the ghost looked like, once we saw her MRI, we had a name. And we could know what we were fighting.

Today, Lesley and I have arrived at our 25th wedding anniversary.

That’s half of my life. And half of hers. Agreeing to face storms of all natures, unknowable and unpredictable, as a team.

We’re not ideal. We’re not perfect. Not even close. We’ve struggled, fallen, been cursed by our mistakes, and battered by life’s strikes.

But we’re together. We’re a team. Somehow, we’re here, in the storm. Still holding on.

Happy 25th anniversary, Princess. I love you.

You’re the strongest person I know. Even when you break.

No matter the storm; hold on to me. For as long as you can.

Don’t be afraid if you weaken.

I will not let go.

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My Princess Has MS, Episode 15: Coronavirus and positives

In which Princess considers online dating, I get tired, and we discover she is a master at social isolation.


Special thanks to Kaitlin Braden and Ben Nickerson for our amazing intro jingle, and to Dylan Edwards for our logo!
Click on the file below for our latest episode, and feel free to share, like, comment, or follow! Please tell your friends, or anyone you think might benefit who has Multiple Sclerosis or is a loved one of someone who does.








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My Princess Has MS, Episode 14: The Struggle Worsens.

In which Princess discusses her rough week, I get puppy kisses, and we discuss Heavy Things.


Special thanks to Kaitlin Braden and Ben Nickerson for our amazing intro jingle, and to Dylan Edwards for our logo!
Click on the file below for our latest episode, and feel free to share, like, comment, or follow! Please tell your friends, or anyone you think might benefit who has Multiple Sclerosis or is a loved one of someone who does.



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My Princess Has MS, Episode 13! (MS and Covid-19).

In which I get rubs, Princess finds out Timbuktu is a real place, (and tries to talk her way out of her upcoming MRI), and we discuss what it means to have MS in the face of Covid-19.

Special thanks to Kaitlin Braden and Ben Nickerson for our amazing intro jingle, and to Dylan Edwards for our logo!
Click on the file below for our latest episode, and feel free to share, like, comment, or follow! Please tell your friends, or anyone you think might benefit who has Multiple Sclerosis or is a loved one of someone who does.









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My Princess Has MS, Episode 12: (Empty Nesting and The Importance of Hobbies).

In which I brag about my beard, Princess finds out the secret reason why we podcast, and we discuss my replacement.

Special thanks to Kaitlin Braden and Ben Nickerson for our amazing intro jingle, and to Dylan Edwards for our logo!
Click on the file below for our latest episode, and feel free to share, like, comment, or follow! Please tell your friends, or anyone you think might benefit who has Multiple Sclerosis or is a loved one of someone who does.





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My Princess Has MS, Ep. 11! (Learning To Accept Help).

In which I make Princess cry again, we don’t splice tape, and we have a jingle! Spoiler warning: This show gets a bit heavy.

Special thanks to Kaitlin Braden and Ben Nickerson for our amazing intro jingle!
Click on the file below for our latest episode, and feel free to share, like, comment, or follow! Please tell your friends, or anyone you think might benefit who has Multiple Sclerosis or is a loved one of someone who does.





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My Princess Has MS, Episode 10! Bonus Valentine’s Day Show: How I Met My Princess.

In which we recount how we met, how I struck out at first, how beautiful life can be, and I make Princess cry. With little hearts all around. Happy Valentine’s Day!!

Click on the file below for our latest episode, and feel free to share, like, comment, or follow! Please tell your friends, or anyone you think might benefit who has Multiple Sclerosis or is a loved one of someone who does.







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My Princess Has MS: Ep. 9! (Driving Miss Lesley).

In which I covet Jeeps, Princess recalls getting lost, and we discuss the impact of her giving up her license.

Click on the file below for our latest episode, and feel free to share, like, comment, or follow! Please tell your friends, or anyone you think might benefit who has Multiple Sclerosis or is a loved one of someone who does.

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My Princess Has MS: Episode 8! (The Legend of the Fall).

In which we argue about the world, Princess describes her latest tumble, I complain about not enough snow, and we don’t get anywhere about exercise.

Click on the file below for our latest episode, and feel free to share, like, comment, or follow! Please tell your friends, or anyone you think might benefit who has Multiple Sclerosis or is a loved one of someone who does.

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My Princess Has MS Episode 8 Teaser

In which we reposition the furniture in the cheapest recording studio in the world in preparation for Episode 8, and I claim the table with ridiculous fervour.

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My Princess has MS! Ep. 7: (Insomnia)

In which I am covered in sawdust, Princess has not slept, contract riders involving chocolate are considered (there is no contract), and the Christmas tree was not picked up.

(The Christmas tree has since been picked up. And put away).

Click on the file below for our latest episode, and feel free to share, like, comment, or follow! Please tell your friends, or anyone you think might benefit who has Multiple Sclerosis or is a loved one of someone who does.

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My Princess Has MS, Ep. 6! (Labels)

In which we don’t hack up sawdust, I find out I’ve been (SPOILER!) manipulated, Princess asks for proof of listeners in other countries, and we discuss labels associated with disability.

Click on the file below for our latest episode, and feel free to share, like, comment, or follow! Please tell your friends, or anyone you think might benefit who has Multiple Sclerosis or is a loved one of someone who does.






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My Princess Has MS Podcast: Ep. 5 (The MRI).

In which two things do not happen, Princess mocks my early bedtime, and the horrors of an MRI appointment are discussed.

Happy 2020!

Click on the file below for our latest episode, and feel free to share, like, comment, or follow! Please tell your friends, or anyone you think might benefit who has Multiple Sclerosis or is a loved one of someone who does.

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My Princess Has MS Podcast: Logo Reveal!

As you probably heard on the show, I’m a huge nerd. Word nerd, Nerd nerd, and Tech nerd. Logos are cool! So I’m busting to reveal our podcast’s new one!!

Makes it feel all real and professional and stuff!
Thanks to my endlessly talented cover and graphics designer Dylan Edwards for this!

Les doesn’t get very excited about such things.

I get very excited about such things. Good colour, cartoon style, appealing visuals…

I know, I get too excited about such things.

Pretty snazzy, huh?

Watch for it on all the Social Things when we announce new episodes each Thursday!








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My Princess Has MS: Episode 3: The Christmas Special!

In which I give Princess an early present, our puppy makes her audio debut, and Princess confesses her new love for delivery men.

Click on the file below to hear the show!

Happy Holidays!

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My Princess Has MS: Episode 2!

Click the file below the image for the second show of our podcast, in which Princess discusses some early symptoms she noticed, trademarks a new term, and I develop a healthy fear of toasters.

The reception the show has received so far has been phenomenal! Thanks SO much to all of our listeners. Please comment, like, follow, and share, if your fancy be so tickled. The feedback makes Princess’ day!



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My Princess Has MS Podcast: Episode 1

So, we’re going to try this podcasting thing!

Click on the link below to listen to the first episode of our new podcast, My Princess Has MS. It’s a bit rough, as it’s our first go at a live, unscripted peek into what it’s like living with Multiple Sclerosis.

As former broadcasters, we’ll be endlessly trying to tweak the audio quality. But we’d love to hear what you think about the content!

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Podcast teaser.

Princess and I recently accidentally taped what could be a teaser for a podcast.

After we listened to it, here’s her working description that she wrote, and, I have to say, if I read this on a list, I’d subscribe.

But I’m biased.

Working Description: A fantasy writing, body building, mental health nurse and his MS afflicted, perimenopausal, chronically depressed, anxiety ridden, panic stricken, OCD-bound, neurotic, poodle-obsessed wife discussing their life as empty nesters and dog parents; hopefully, making it sound more interesting than it really is.

We do, however, have broadcasting backgrounds that need not go to waste, so there’s that. Finally, that college diploma gets put to good use.

We have no idea what we’re doing, but it seems like fun, so why not. (That is also the guiding philosophy of our approach to both parenting and being married people).

You can listen to what could be the teaser below:

We’d love to hear what you think. Should we make it a thing?

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Publishing Industry Nightmares.

In the ongoing discussion about whether indie publishing is tenable, or even a thing, a lot of ugly business emerges. Most of it is discovered after some careful digging through sites like J.A. Konrath‘s and others in the field who have exposed life in the publishing tower’s secrets. Every year, it seems more of Big Publishing’s practices are exposed, and more and more, they remind me of Big Oil and other “Bigs” who are desperately struggling to understand life in this digital age, and failing.

I strongly believe that we are just as immersed in a technological revolution, that has really just started, by the way, as society was during the Industrial Revolution. Fists are being banged onto desks refusing to acknowledge new ways. Furious millionaires are determined to choke every last dollar from dying industries and practices before they draw their last breath. Men who rose to power with typewriters and letters in the mail scoff at those who dare to publish without them, and do their level best to crush their progress.

Don’t believe me? Read through Konrath. or read this:

https://publishedtodeath.blogspot.com/2017/09/an-insiders-view-of-publishing-business.html?fbclid=IwAR1ltemVunMfjPrdJFe4_nvoayR-bm-KzCNZcNhlHdjV2MoQ1Py5EGO7UWg&m=1

I’ve written in the past about developments in the publishing field in the midst of all this; I find it fascinating to study. I also continue to describe my own journey through and around the barrage that is modern publishing. Note that I do separate that from writing; I don’t believe the two are necessarily connected, and for most people, shouldn’t be. (Same as self-publishing and indie-publishing are not necessarily the same thing).

Erica Verillo‘s not wrong. The chaos she describes is pretty plain to see; just look at your average bookstore chain’s shelves over a year and you’ll see it too.

I firmly believe the future is micro-economic. Small, cottage producers of content that grow organically to be sniffed at by Big Industry, prompting the creators of that content to decide to sell their wares to the machine, or not. And new, pioneering companies like Engen who take their drive and dreams and carve out a chunk using the current technology and craft relationships with their local writers who would never get a chance elsewhere. That is the future, friends.

This is not a new concept. See Teenage Mutant Ninja Turtles, Dungeons and Dragons, Warhammer, Call of Cthulhu, and every other small project that eventually became a marketing powerhouse.

And how did they do that?

Quality.

It always starts with quality.

I’m not saying I’m one of those. But I am saying I’m writing to write, small and in the dark every morning, shaping my stories, grooming them for the world that technology has finally made possible.

I’ve gone from coil-ring notebook, longhand writing to typing on paper, to blogging with clickable links, to printed copies in my hand and my amazon store of published novels and short stories.

And we are just getting started. But the journey, the process of this evolution, is really fascinating and worthy of recording. I really do see it as one of the greatest advancements of the arts in generations.

There was nothing like this for H.P. Lovecraft, or Charles Dickens, or Stephen King. Imagine if there had been! I’ve discussed such in The Write Podcast.

Society is quickly growing exhausted of reboots, and throwaway conclusions of stories because the writers had more lucrative things to do, and the endless mining of old material. They are starving for fresh stories, new worlds, and original ideas. There has never been a better time to have an idea. Everything you need to present it is literally at your fingertips.

And that’s me talking; the darkest, most jaded person I know. So, you know,…possibly relevant.







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Be Your Joy.

Today? Just for today?

Be this hedgehog.

Even just for a full minute.

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