Thrashing and Gratitude

 

 

Wow! It has been a long, long time since my last post here. I didn’t actually realize how long it has been.

The last months have been a whirlwind as we have tried to finish some accessibility projects, find an accessible vehicle, take care of all of our physical and emotional needs, struggle to get access to new treatments, and take Scout for all of her desired walks.

It has been a time of what I refer to as thrashing — wanting to slam doors and yell at the injustices in the world, and often, in healthcare. How can patients be denied the opportunity to even try treatments? How can we be FIFTY-ONE days past the approval of a treatment for ALS (not a cure, not even to improve things, just a possible way to slow it somewhat), and we can’t even get the “patient care” team of the pharmaceutical company to respond to multiple requests as to where we are in the process?

It has also been a time of thrashing in terms of grief.

Recently, a former student died of an overdose. Unequivocally, he was the brightest student I ever taught — and over the course of my teaching career; I have taught many more than a 1000 students. He made me laugh. He made me think. He questioned me constantly. I learned far more from him than he did from me. His light shone brightly, even as he struggled. I was, and am, proud to have known him, and he left an indelible mark on my heart and mind.

When Sam died, this student (now an adult and the parent of several children) came to see me at my work to express his support for all of us. At the time, he’d been in recovery for a long time. We sat and talked, and his understanding of my grief, and his gentle love and support, made me cry with gratitude.

COVID messed up that recovery, as so many recovering addicts could not get access to the supports they needed.

That’s not okay. We need to do better, period.

Much better.

Everyone is worthy of love, support, appropriate/affordable/accessible care. Period.

As I thrashed, I also realized that it has been a time full of love and support. Beautiful artwork arriving in the mail. Mystery postcards expressing support and love. Countless friends and family stepping forward to offer whatever help they can. Pruning, raking, fixing fences, walking Scout, helping Paul explore the natural world, all have happened, and are so appreciated.

So, I’m back — still thrashing, still grateful.

Won’t you join me in both being grateful, and in a commitment to making our world a better place?

 

The Changing Times and Views

Lately, it has been a very busy time for us as a family, and a time full of changes and challenges for us all.

Health challenges.

New jobs.

Lost feathered friends.

Changing or adjusting goals.

New realities.

We have faced them all. All within the last month or so, and it has been a whirlwind. At times, it seemed almost overwhelming. No, scrap that. It was overwhelming, but then we refocused and found our way again.

This journey of ALS is teaching us so much. Our old self-expectations have to be re-visited and adjusted almost daily. That huge garden that could produce most of our produce needs? It has to be trimmed back as we just don’t have the time, energy, or enough help to accomplish it all. The hope of having the kitchen project done by the first of July? Not happening.

None of this is due to lack of effort or devotion. It is because of the sheer amount of work and time involved in the daily realities of our changing lives. The time spent on things like medical appointments and improving accessibility is almost unimaginable.

What we are learning is that the quality of life, and love, matter more than anything, and that, that we have!

 

Hello!

Wow, I suddenly realized how long it has been since my last post.

Over the last months, our lives have been a whirlwind of activity. First, we had to deal with a Vermont winter. Then we traveled as a family to a vacation in the Dominican Republic, then got COVID, and were all consumed with making needed adaptations to our home with my husband’s changing needs.

It has been a time of reflection. Of laughter and trying to stay hopeful. Of fun and fear. Of grieving for what we have lost, and what we will lose. It has been a time of snuggles with Scout, and knitting.

Finally, it is time for the vegetable garden. I can not tell you how much good it does my spirit to see the garden coming to life. The first meals of produce from our garden have been a gift both in terms of taste and the sense of hope they have provided.

The Story of the Story

My first, and latest, novel releases tomorrow!

What do I mean by that? My newest novel, That Missed Call, will be released by Between the Lines Publishing tomorrow, and I can’t wait!

This novel was the first complete novel I ever wrote, started in 1993, when I was a stay-at-home mom. Our Sam didn’t believe in naps. Frankly, he found the world too interesting to waste time on sleeping. He would, however, take time each day when he would happily listen to music (Yanni and Meatloaf), play with toys, or look at books in his crib. He would babble away, and I would sit nearby, working on our old Mac computer.

The story of Kat and Alex started from a snippet of a dream. As it came to life, it took many strange turns and twists. Over the years, I kept revising it and sending it out to agents and publishers. My first full manuscript request made me scream with joy and excitement.

One day, an agent responded to my query. He liked the general story, but wanted me to make some major changes if I wanted his representation. At that time, it was entitled The Dirty Dishes, and it started with Kat stepping in dog feces while running. After all, in the 1990s, that was a true hazard in New York City! I took the agent’s suggestions to heart, revised it, and for a short while, he half-heartedly represented it.

Another round of major revisions, and the process started over again. Then again. Then again.

Then Sam died. Twenty years had passed since I started the book, and with Sam’s death, I stopped writing completely.

Except I couldn’t stop. I love to write. And that story, by then called The Phone Call, was part of my DNA as a writer, and was part of Sam’s legacy. I needed to see the process through, so I hired a superb editor, and within weeks of that editing process, I had my first publishing contract.

That day, the day of being offered a publishing contract, was one of the most emotional days of my life. I screamed with joy. I cried. I jumped up and down. Other than my husband and our youngest son, I didn’t tell anyone that day, wanting to wait until the contract was signed.

Then I went to the cemetery and told Sam all about it. And I cried again. He had so believed in me and my writing, and I so wanted to hug him with joy.

Fast forward to now, and what was once The Phone Call, is now That Missed Call. It is not the same book in so many ways, as so many talented professionals have worked with me to bring it to this point. So while it is somewhat of a re-release, it is actually what I would refer to as a rebirth of a story that started with a snippet of a dream so many years ago.

 

 

Scout’s Teachings

This is Scout. Scout is our half golden-doodle, half bulldog puppy, who just celebrated her first birthday.

Scout is my teacher.

Those of you who know me personally, know that patience is not one of my virtues. I multi-task almost constantly, and I don’t take the time I should to stop and look at the world, to enjoy its beauty.

Scout is helping me with this.

When I was a child, Ferdinand the Bull, was one of my all-time favorite books. I loved the idea of a bull who sat under trees and admired the flowers.

Scout does that, every day.

Now, let’s be realistic, when I take Scout for one of her at least eight walks a day, I really want her to do her business and let me get back to my list of things to do.

Scout is not about to let that happen.

Scout has to admire the beauty of the world. Snow is falling? Scout sits and tips her head back to enjoy the snow. Flowers are blooming? Scout has to look at each one, and smell them as well. The leaves are turning the colors of fall? Scout gazes at them with awe. Rain is falling? Scout has to stop and watch the drops falling into puddles, mesmerized by the patterns in the water.

This picture is of Scout in one of her favorite places, sitting on the back deck, on a chair, staring out at her land and her creatures. Yes, she is always watching to make sure that a rabid squirrel isn’t thinking about coming near her fire pit, but most of the time, she sits, her tag slowly wagging, as she looks around in wonder.

At first, I tried to hurry her up. It didn’t work, and all it did was frustrate me. Scout didn’t care how fast I wanted her to move, she was (and is) going to enjoy the sights, sounds, and smells of the world, and I am learning to adjust to her way of doing things.

It is a good way to live, and I am so thankful for Scout forcing me to slow down, look at the beauty, and smell the flowers once in a while.