On Lifelong Friends and ALS

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A few weeks ago, I visited my friend Laura up in Wichita, Kansas. Those of you who are long-time readers of this blog have heard of Laura several times before in these missives. She’s the one of the gals who saved me from utter friendlessness when I was a glasses-wearing, chubby, awkward smart kid in elementary school. She’s the one who drove six hours to give me a much-needed hug and a stunning quilt she’d made for me after The Fire destroyed everything we owned. It’s called “Roses bloom again.” Laura’s been a raving fan of my books since the beginning of my 3rd career as a writer.

Just this past year, she popped down to see two plays I’d directed here in the Dallas area, making that same 6-hour drive each time. It’s always so nice to see and be with Laura. We are near-opposites on plenty of ideological things, but our friendship has always come first, and the other stuff never seems to matter, or we have an interesting, respectful conversation about our differences. Her husband Ken is a great guy, too. I’ve known him since high school.

When Laura was here the last two times, just this past summer, she was using a cane to walk. A couple of pesky falls had knocked her around a bit. We laughed and talked for hours and hours and walked slowly wherever we needed to go. I really didn’t think anything of the cane. Just part of getting dinged up and not bouncing back the way we used to.

We have occasional phone calls, too. A month or so after her visit, I noticed her speech was a bit garbled. Now I know for sure that Laura isn’t a drinker, but it was like that, how you talk after one too many on a girl’s night out. A bit slurred, nothing remarkable. I remembered the time I accidentally bit a bee when on a picnic, and how my tongue swelled up, it was that kind of thickness of speech. She was concerned enough to see a speech therapist. She also had another fall in her garage and couldn’t get up from it. She had to call Ken to come help her.

Small alarm bells were going on for both of us. Like a distant fire alarm in a big building, when maybe you should leave, but maybe not, and you hem and haw without getting up. That level of alarm.

Laura went for testing. And then more testing. The therapy she was getting for speech and swallowing wasn’t helping. I recommended on a call we had together in October that she not postpone anything (the insurance was saying the first available specialist opening was something ridiculous, like January), and get in to see a specialist. The prayers of friends and the planets aligned, and she got in within a week to see a top medical professional. He did more, quite unpleasant, tests.

I didn’t hear from Laura for a week.

We finally talked when she was ready. It was a worst-case situation. My dear friend was diagnosed with ALS. If you are lucky enough not to know what that is, in a nutshell it’s a nervous system disease where the cells break down and the muscles they serve don’t get the message to move. It’s rare. They don’t know what causes it, really. Baseball great Lou Gehrig and astrophysicist Stephen Hawking had it. It’s no respecter of physical stamina or brains. If it was, my friend Dr. Laura (yes, she has a PhD) would have been free and clear of it.

It’s incurable. People can live with it for a sturdy amount of years, or not. No telling. It’s horrifically unfair.

So, I went up and visited my friend. I got to do the six-hour trip this time. We had fun. I got a hotel room about three minutes from her beautiful home. We hung out, ate some food, watched TV, talked the way we do. The way we always have. I had some prickly situations with my parents that I needed to get her always-excellent and thoughtful advice about. It was wonderful being with her for a couple of days. Everything has surely changed, but in another, more important way, nothing has changed. Laura is Laura. Laura is my lifelong friend.

Not quite three months after her diagnosis of ALS, Laura is in a zippy purple electric wheelchair. They’ve bought a van that accommodates it, and her church built an amazing ramp she can use to get down into the garage. Laura can’t hold her head up very well. She uses a neck brace. She can’t lay down to sleep anymore, and instead uses a recliner. Her speech is okay, if you know her, but you can tell it’s a strain for her to talk after a while. She’s planning on getting one of those boxes where you can input words and phrases to make that easier. Eating has become difficult. In typical Laura fashion, she quipped, “I’m finally down to my ideal weight!” The latest thing she went through was to get a feeding tube implanted in her belly. Getting sick is not for sissies.

Both Laura and Ken seem to be pragmatic about everything, facing it head-on, with a lot of grace. She’s honest about the difficulties of this new reality. I’m going to let her tell you about it, with her permission. The first section is from mid-January, a few days before my visit.

***

ALS is a beast. This is a totally transparent and long post about the current state of my daily life.

I usually don’t feel well in the morning. Either I’m groggy from lack of sleep, sore from sleeping in a recliner, or fighting an upset stomach from my medicine. I don’t get much done and I sometimes nap mid-morning. Some mornings I feel pretty good. Ken makes me a protein smoothie with yogurt and fruit because it seems to sit better than anything else and I don’t usually choke on it.

I try to be productive for a couple of hours in the afternoon, writing or reading or whatever I need to do. I kind of poop out around 3:00 and nap again. I feel like I’m sleeping my life away.

I have my tv routine and watch the same shows every day. I try to read but it’s hard to concentrate.

I’m pretty fortunate right now. I can still walk enough to transfer from recliner to wheelchair to toilet. I can walk with my rollator, but I can’t hold my head up even with a neck brace. That’s what keeps me from sewing or doing most things around the house. If I’m sitting in a chair with back support, I seem to be able to hold it up. I run out of air and have difficulty breathing, so I use my ventilator several times a day and I feel better.

By evening I feel pretty good, especially if I’ve forced myself to eat during the day. I sit here and for a few minutes feel normal. I can almost forget something is wrong with me. That is until I need to get up and do something. Then it all comes crashing back.

Twice a day I choke down my pills with applesauce, so they don’t get stuck. Around 10:30 I kiss Ken goodnight and slide my ventilator harness on and cover up. I lay back in my recliner because I can’t sleep in bed and most of the time drift off to sleep for an hour or two, three if I’m lucky. 5:00 am arrives, and it all starts over.

Where will I be in a couple of months? In 6 months? In a year? I thank God every time I stand or walk. I thank God I can still talk-sort of anyway. I thank God for my wonderful caretaker husband. For my friends who come to visit or send a message or a card with a handwritten note. That makes my day.

February Update: I spent a terrifying 24 hours in the hospital last week. Everyone online and my doctor assured me that getting a feeding tube was “a piece of cake”. Well since my current mode of operation is if it can go wrong, it will, I had breathing complications. I spent the night in my purple chair in a hospital room because I was terrified to get in a bed where I couldn’t move. The night nurse had no understanding of ALS and harassed Ken several times for spending the night in my room. This has been one of the roughest weeks of my life and there have been many tears and fears of what the future holds. I don’t have any choices. My dear husband and I continually tell each other not to give up. I don’t have any choice. With God by my side, I’ll keep going. 

***

I’m so lucky to have a friend like Laura, to have had her for over fifty years. And I’m pissed as hell that this happened to her.

Here’s the ALS foundation if you’d like to know more: https://www.als.org/

And the link for Laura’s Go Fund Me, which is helping to bridge the crazy expense gap: https://www.gofundme.com/f/laura-mclemore-fight-als

On Perfect Quiche and a Virginia Visit

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My love language wasn’t always feeding people. It developed over a long period of time watching my husband, an accomplished chef, feed people. Having athletic teen boys leant itself to learning to love cooking too, especially when they brought their friends home for dinner.

I loved being that house where the kids knew there would always be good food, and likely brownies for dessert.

Living in Tennessee for ten years also put a thumb on the scale. There are some flat-out brilliant cooks there, the kind that will, after a bit of begging, share their recipe for their cheesy onion tart, but only after swearing not to share it with anyone else. I swore, so you don’t get that one, unless you come to a holiday party. It’s about 100,000 calories a slice, and worth every one of them. It’s the thing I’ll bring to a potluck in wintertime.

Another friend, Kathy, said it was okay to share her wonderful quiche recipe, the basic form for which you’ll find below. I like how creative you can get with this one, and it really does turn out perfect every time. For example, I do love a ham and cheese quiche, but I usually add a bit of zing in the form of a quarter cup of chopped red onion. The other one was four cheese (the Quatro Formaggio packages you get from Trader Joes), tomato, fresh basil, and green onion. So basically, make the different ingredients add up to about two cups, and have a fun time being creative. Now, you can make things harder on yourself by making your own pie crust if you want, but the refrigerated Pillsbury ones work really well. I don’t recommend any other premade pastry, though.

Kathy pre bakes her pie shell, and I agree it makes this dish tastier, but you don’t have to. If you do, just heat oven to 425 degrees, in a 9” pan. Prick with fork and bake for about 5-6 minutes before you put in the rest of the ingredients.

If you’re using tomatoes, as I did in my last batch of these, make sure they are thoroughly seeded, and as much wetness removed as possible. That goes for any vegetable ingredient you decide to add. Extra moisture is the only way you can tank this recipe, so let’s avoid that, okay?

PERFECT HAM AND BROCCOLI QUICHE (Original Recipe courtesy of Kathy Hall)

1 refrigerated pie crust (the kind you roll out)
1 cup cooked ham, chopped (lunch meat is fine)
1 cup shredded Swiss cheese (or your choice, I prefer Sharp Cheddar)
1-1 ½ cups frozen broccoli, thawed (you have to make sure you get the moisture out)
4 eggs
1 cup milk or half and half (I use almond milk)
½ teaspoon salt
½ teaspoon pepper
either 1 tablespoon of prepared mustard (I use Grey Poupon) or ½ teaspoon dry mustard
Pinch of cayenne if desired

*Preheat oven to 375.
*Layer ham, cheese, and broccoli in crust-lined pie pan. Mix the remaining ingredients, mix well, pour over. (It’s easier to get the Quiche in and out of the oven if you put the pie pan on a cookie sheet—no spills also.)
*Bake at 375 for 35-45 minutes or until a knife inserted into the center comes out clean. Half and half will cook more quickly than regular milk. Let stand at least 10 minutes before serving.

I like to make this a day ahead of time, and once it’s completely cool, I put in the fridge overnight.

The reason I paired this recipe with our recent visit to scope out Roanoke, Virginia is that when we went there, we were plunged right back into the delicious home cooking one finds throughout the Appalachian region. Like singing, the ability to cook heartily and well seems to be in the water here. Folks just cook brilliantly. I couldn’t help myself, and on the trip, I indulged in some sweet tea* and a fantastic fried green tomato sandwich that had pimento cheese on it. I know, maybe that doesn’t sound great to you, but that’s because you haven’t tried it yet.

The trip to Roanoke** started with flying into Charlotte airport. We’d been through the airport many times when we lived in Johnson City. It’s changed and grown, so it was a bit of an ordeal to find the rental car place there. We got a lot of steps in, though, so that was good.

The drive up to Roanoke from Charlotte was spectacular, even in the dead of winter. The roll of the mountains getting closer and closer, the climb into them, the views back down to the coastal plains below. I’d missed the mountains. Perhaps you know how that goes—you remember how beautiful something was but have forgotten that it’s awe-inducing until you’re confronted with it once again after an absence.

It’s like finding a twenty-dollar bill in a pair of pants, a tiny explosion of wonder followed by joy that makes your whole day feel magical.

As we drove, I realized I’d become inured to the beauty of the area when I was living there for ten years. The mountains became an attractive backdrop back then, just part of the scenery. I made a quiet vow to myself that if we move back into their proximity, I won’t take them for granted again. Coming from a five-year stint in the flats of Texas, they regained their proper breathtaking status in my mind, where they shall remain.

We stayed in an Airbnb, nearly our whole family under one roof, for a long weekend. It was nice to just sit in the living room and chat, but that wasn’t the real mission. Our real mission was to scope out the town and see if it was a place we, as a group, would be willing to relocate to.

So we drove around Roanoke and its sister city Salem for the better part of two days. We toured a few apartments. I checked out the YMCAs, as I cannot be anywhere that doesn’t have a pool. We ate out, poked around antique stores and bookstores. The area was a mix of run-down and lovely. Bigger than I’d imagined, too. I usually carry a sort of rolling map in my head when I visit somewhere but got turned around as we drove. I think it had to do with the fact that the city is nestled inside of a ring of mountains, rather than them being helpfully on one side for visual reference. Nestled is a good thing, when you get used to it.

For me, being back in the mountains and realizing that we could relocate here, our family all together, or at least in near proximity, resonated in a hopeful way. Moving is always tedious, of course, as is finding your way around yet another new city and finding friends without the bridge of kids in school to help the process. But sometimes, as Edward Albee said in his play “The Zoo Story,” sometimes you have to go a very long way around to come back a short way correctly.

*Sweet Tea is my kryptonite. The very first time I had it when we were looking to move into the Knoxville area was at a McDonalds. Resistance is futile when you have Sweet Tea on tap with free refills. I had to swear off of it completely, like an alcoholic when we lived in Tennessee.

**Not THAT Roanoke, where the people all disappeared from back in the 1580s, leaving only a cryptic “Croatan” carved into a tree. That one was on an island off the coast of North Carolina and predated the Jamestown colony by 17 years.

On Keeping Resolutions and Those Trader Joes Bagged Salads

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We are only a few days into 2023, and it feels like Christmas was a hundred years ago. My husband and I took down the tree two days after Christmas and packed everything back into storage. We were both ready to start a new year.

I mentioned before that I’ve decided on a couple of big goals for this year. One is to get my pen name (Stacey Christine) up and moving with a fun sweet sports romance trilogy. I took a nice long break after keeping my promise and getting all of the Tales of Darkwood books published in a year. Here’s the latest one, it clocked in at 107,000 words. I am very proud of it.

I started back writing on January 1st, and now ten days later, I’m nearly done with the set-up prequel, so if any of you are romance readers, let me know. I’ll need 2-3 beta readers checking my work for gaps in the story, or if something doesn’t work next week. The novella will be around 30k words, or 120 pages. I’ll also be starting a newsletter specifically for Romance next month, so let me know if you’d like to get on it. I’ll have deals for Romance books in it, a link to get this first novella, and good recommendations along with snippets from the trilogy as it progresses. Will Megs fall in love with Zach the buff triathlete, or with Jeb, her high school sweetheart, who she hasn’t spoken to in ten years because of a terrible mistake?

I have to say writing a contemporary romance is… easier than writing the dark fantasy. Mostly because I can say someone pulls up to a stoplight, and you all know what I’m talking about. As opposed to say, the rabbit holes I’d disappear down when mentioning something as innocent as a bakery in a medieval town. In order to describe it properly, so you’d feel that you were there, and wanting to be as historically accurate as possible, I’d find myself googling what the interior of a 1450s bakery really looked like, and how the oven worked, what sort of tools they used, how long did it take the bread to bake and were the ovens inside or outside, and if they sold the things on the premises, or did they have delivery boys, and did they keep their own goats and chickens or were those things purchased… you see how it can get a bit more… involved.

The other reason I’m finding the words flowing easily is that a Romance genre by definition must end happily, so it becomes rather fun to write. I mean… every one of the five books in the Darkwood series ends on a “happily for now” note. But it is medieval times, and the source material is Grimms, so really, how happy could it be?

I will say my Darkwood characters, Gert in particular, are SCREAMING at me about this. Gert wants her own story, and the quicker the better. She’s a pill, that one. And I will get back to the Darkwood after I finish the trilogy of Sweet Sports Romance. The Darkwood turned out to be a place rich with stories. I plan on twisting The Three Little Pigs, Aladdin, and The Little Mermaid. Let me cut you off as you shake a finger at me and say that those are NOT Grimm’s Fairy Tales. Yes, I am aware that Little Mermaid is a Hans Christian Andersen story, and that Aladdin comes from a far older, really wild Middle Eastern tale. In fact, I just learned by reading a book for book club that it was actually the British explorer Sir Richard Burton who translated the Arabian Nights into English. As a person, Burton left much (much!) to be desired, and he never found the source of the Nile, but he did know 29 languages, and a did a great job in bringing us the Arabian Nights. He also brought us the Kama Sutra in case that’s more to your taste.

My other big goal is going into training for a half Ironman. Which, you know, involves running, which I haven’t done in a long time (roughly 30 years) and biking, which I did for a brief time about twelve years ago. In other words, yours truly has been doing things outside her comfort zone. I did a five-mile walk/run today. It went okay. I will maintain high hopes while I ignore my disgruntled feet.

I’ve also been watching what I eat now that we’ve started a new year. It is much easier to run if you weigh less, just saying. I have to put a plug in for Trader Joes’s bagged salads. There are a couple that I’ve been eating for a long time, but two new ones have recently cropped up and I cannot get enough of them. The first is the Dill-icious one, which, I kid you not, is a riff on Dill Pickles, and has potato chips for the crunch in it. I love a good dill pickle, and when my son recommended it, I had to give it a try. High marks. The other one is even better, the Elote Chopped salad. It is SO GOOD. It has little cornbread crumbles, and a little bit of Cotija cheese to go with all the chopped veggies and the tasty dressing.

I am a bit fussed about how much plastic they use to package up these salads but grab them when you can. My understanding is that they are a seasonal item.

How are your resolutions going? Let me know in the comments and let me know if you’d be willing to be a Beta reader for my initial foray into Sweet Sports Romance. I’ll be choosing those folks by the end of this week.

On Endings and Beginnings

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In this odd week between the hoopla of the holidays and the modern-day demarcation between one year and the next, I’m given to both reflecting on the past year and planning for what I’d like the next one to contain. I also like to watch apocalyptic movies like “The Day After Tomorrow”* as I valiantly do my part to clear the cupboard of bread and cheese before the new year begins.

I approach the planning part of the equation much more gingerly than I did pre-fire and pre-pandemic. All the hope-filled planning in the world cannot account for an epic blaze or lockdowns that last months. Sometimes those cataclysmic events can serve a purpose, however. Just like the fire steered me to first write this weekly blog, and then later to write my first book, the pandemic steered me away from a focus on directing plays and being a VP in Arbonne to becoming a full-time writer. My third career, as I’m calling it.

I’m still messing around with what being a full-time writer entails. I joke that it’s the wardrobe of stretchy pants, warm sweaters, and fuzzy socks that are the true draw, but the truth is I just love spinning the stories and allowing the characters who belong to me to find their voice. I also believe if I don’t give them that agency, they will go to another writer who pays attention when they knock on the window and peer in. Finding my personal writing practice has been a big plus this year. Even if it means that I get up at a silly hour of the morning, damnit.

For the coming year, I plan to add a few more stories in my dark fantasy realm of Darkwood, but I’m more focused on a big launch of my Romance pen name (Stacey Christine). I did one paranormal romance short story under that pen name this year, adding to a collection that served as a fundraiser for homeless cats and kittens. I’m taking a deep breath and plunging into Sports Romance trilogy + novella with a bit of spice to start, and am seriously considering doing some Later in Life Small Town Romance as well later in the year. I know, there are so many little niches to discover. It took me by surprise, too. Like I didn’t know Sports Romance was actually a thing, but it’s all I’ve been reading this past week (with side dollops of non-fiction for my DAM book club, “River of the Gods,” by Candice Millard, and a fun re-read of “Christmas at the Cupcake Café,” by the always engaging Jenny Colgan.) Sports romance tends to be pretty racy. All those sweaty bodies in peak condition. Sports Romance is also written in first person present tense, two-character viewpoint for the most part. I prefer writing in third person past tense with multiple character viewpoints, so that’s going to be the first hurdle. I foresee I may need to pay a line editor as well as a proofreader to catch all the slips into past tense as I transition.

After spending a year and a half building out the Darkwood** characters and world, I’m ready for a change. There are a few of the characters from that series (mainly Gert) who are complaining about this break from their stories. I know that anthropomorphizing my make-believe people makes me sound as mad as a hatter,*** but that’s just a fiction writer’s mind for you. On some level, it’s always writing. I’ve come to accept it and go for long walks to soothe the turmoil having other little voices in my head creates.

My other big goal for the coming year is to train for a (oh my goodness, it feels scary to write this) half Iron Man that I plan to do in early fall 2024. The swimming is easy-peasy for me… but I don’t like running very much, and I’ve never biked a long distance. There’s just something in me that needs big goals, though. They get me going. I’ll start small, adding baby runs into my walks, and hopping on a stationary bike at the gym. They say you have to sort of build up your butt to withstand the miles… I don’t think spin classes are in my future, but never say never, right?

So, what do you have planned for the next year?

*This movie still holds up, except for the CGI wolves. And whatever happened to Emmy Rossum?

**The first book in my series, “The Traveller’s Tale,” will be FREE on Amazon in both the US and the UK on the 30th, 31st, and 1st. The 2nd book, “The Twins of Darkwood,” will be 99 cents during that time as well… so if you haven’t picked them up yet, now’s your chance!

***Mad as a Hatter is a saying from Victorian England. The hat-making trade used mercury to turn the fur of small animals, like rabbits, into felt for hats. The prolonged exposure caused the hatters to develop tremors, speech problems, emotional instability, and hallucinations.

Original Alice in Wonderland art is by John Tenniel