The Unsung Heroes of the Battle Against and With ALS

By now, you know doctors diagnosed my husband with ALS (Amyotrophic Lateral Sclerosis – https://iamals.org/what-is-als/) in May 2019.

To say that we took his diagnosis hard would be a gross understatement. But then, to make it even worse, we had to tell our children the news. Now, again, as you know, we lost our middle son to an accidental overdose in 2013, so our family is no stranger to bad news.

This was different. We were telling our three living children and our friend who we consider our second daughter that not only did their father have, to quote Brian Wallach, a “CURRENTLY terminal disease,” but we had to tell them how the disease was likely to progress, and how much time doctors were giving their father at the time of his diagnosis.

We told them. We cried together. We swore together. We promised to fight this together, and support each other.

And we have.

Our children aren’t the only ones doing this. It doesn’t matter if they are young, or adults. They step up and into a world they never wanted nor expected, and they do it with love, passion, dedication, humor, and strength.

The children of those with ALS are some of the unsung heroes of this hellish disease. They didn’t sign up, or take vows, to be part of such a journey. They choose to stand by their parent. Over time, they take on roles that previously the parent had with the child. For example, helping a father put on his socks. Wiping a mouth. Holding a hand to draw a square. Helping a father shave. They help in so many ways, ways none of us ever expected to need.

For us, our children are adults now. They help in more ways than I can count or list here. More than anything, they help with limitless, unconditional, unwavering love. They don’t shy away from the reality, nor do they hide the emotions inherent in this journey.

It isn’t just the children, but for us, our grandchildren, too. They know their grandpa has a terrible sickness, but instead of being afraid of it, or of him, they look for ways they can help; they ask questions; they accept the reality.

This is two of our sons, and one of our grandchildren, helping us to fix the walkway, so it is easier for my husband to maneuver.

No one wants a diagnosis of ALS. No one wants that diagnosis for a loved one. But, the one thing I am sure of is how amazing the children of those with ALS are – they truly are unsung and unseen heroes.

 

 

The Wonder of Nature

This time of year is such a glorious time in the natural world. As I walk around our land, I see the vegetable gardens bursting with produce; the flowers are showing their colors, and the fruit bushes drip with ripe berries.

There is the absolute advantage of being able to walk out the back door and pick much of what we want for each meal. There also is another advantage, one that I didn’t fully recognize until the last few years. That is the emotional joy and peace nature gives. Walking amongst the rows, weeding them, picking the bounty — these are a form of almost meditation for me.

I encourage you to take a walk outside. Look at the colors. Take in the sounds and smells. Breathe deeply. Take a moment to revel in the wonder of nature.

The Power of Editing

As you know, I am readying my first three novels for re-release with a new publisher.  An interesting part of that process is that I was able to tweak the books, and update them if I wanted.

I did want to update them. What I didn’t realize was what an emotional journey it would be to do so. Why? Because those stories, those characters, and the books themselves all have places in my life, they are part of my heart and soul.

My first novel, The Phone Call, which will be re-released as That Missed Call, is the one pulling on my emotions the most. First of all, it was my first novel, and it was my first publishing contract. Both facts would give it emotional significance, but the real reason for how much it has touched my heart is that it was the book I started back in 1993, right after Sam was born.

You know the story, Sam wouldn’t nap, but he would self-amuse for a bit each day. I used that time to write stories, stories which became this book. Now I am reworking it, and I can see the ways to improve it as a book, but that doesn’t come without some angst. Sam was here for those original words, and sometimes it feels wrong to cut them. But I can feel his presence here now. Frankly, I can hear him laughing, telling me to stop being so melodramatic, and just cut those painfully long and wordy scenes that could be so much tighter. So I keep editing.

In the next week, that book will be through its last major set of revisions, and be submitted to the publisher for its re-release. I can’t wait to see its final form!

Discouraged and Grateful

To start, let me say that I am discouraged today.

Why? Because the President left ALS out of the speech last night while specifically mentioning other diseases in his list of priorities, and it is abundantly clear that the FDA of the United States not only doesn’t care about ALS patients, they are ACTIVELY slowing the approval of treatments. ACTIVELY. How can we have approved vaccines for COVID in less than a year, and some approved COVID treatments, but some ALS treatments have been in their approval pipeline for over 10 years? We need to worry about side effects? Seriously?

ALS is 100% fatal.

Don’t take my word for it, read the excerpt from the NIH, and pay special attention to the italicized parts.

The National Institute of Neurological Disorders and Stroke says:

What is amyotrophic lateral sclerosis?

Amyotrophic lateral sclerosis (ALS) is a group of rare neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement. Voluntary muscles produce movements like chewing, walking, and talking. The disease is progressive, meaning the symptoms get worse over time. Currently, there is no cure for ALS and no effective treatment to halt, or reverse, the progression of the disease.

In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, and stop sending messages to the muscles. Unable to function, the muscles gradually weaken, start to twitch (called fasciculations), and waste away (atrophy). Eventually, the brain loses its ability to initiate and control voluntary movements.

Early symptoms of ALS usually include muscle weakness or stiffness. Gradually all muscles under voluntary control are affected, and individuals lose their strength and the ability to speak, eat, move, and even breathe. Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear. 

If you are having trouble understanding this cold description, let me simplify their words. ALS is 100% fatal. It is a horrific disease that eventually leaves most people with their cognition and emotions intact, but the entire body fails. No walking, no eating real food, eventually, no breathing. Some places refer to it as the “glass coffin” disease.

There are no real treatments or cures. Period. NONE. Imagine going to your doctor and being told you had cancer and then be told to just go home and get your affairs in order because there are no options for you. No chemotherapy. No radiation. No surgery. Sounds awful, doesn’t it?

So, now that you are probably about to walk away from reading this post because it is too much, let me tell you the good things.

  • The doctors and nurses (with a few notable exceptions) who choose to work in this field are the most dedicated and passionate group you will ever meet. Imagine going to work each day knowing that 100% of your patients will die a God-awful death, and yet you still show up and try your best.
  • Families and patients with ALS are rock stars of strength, humor, and creativity. As we have been on this road, every day, I learn from my companions on this journey, and their ability to remain centered and filled with love amazes me. I’ve read WAY more people complaining online about having to wear a mask during COVID than I’ve heard ALS families or patients complain about what the universe has handed them.
  • ALS helps you strip away all the unnecessary garbage in your life. When you are fighting for survival, and for each precious moment with people and creatures you love, you stop worrying about things like wearing a mask or whether your favorite beverage is in stock at the store.
  • It has shown me again the strength of our children, family, friends and creatures. You want to see love in action? Watch our huge sheep Hila gently walk up to Paul to rub his face, or watch her walk beside him as he leaves the barn so he has something to hold on to. Watch our grandchildren help their grandfather take a walk and hear them make peace with the reality that he will probably be in a wheelchair at some point. Watch our sons help turn our house fully accessible. See the containers of soup that arrive from our daughter. See the notes, texts, emails and random acts of baked goods that arrive. See our phones light up with video calls just to check in on us. See local practitioners learn how to help someone with ALS. That is love. That is strength. That is a gift.

So, yes, today, I am discouraged beyond belief that a system (our government) has failed the ALS community again. But I also am grateful for what this journey is teaching me each day.

Today, I choose to be grateful for love, strength and laughter.

 

 

Updates, Updates, Updates

It has been busy lately. Well, let’s face it, it’s always busy around our house!

I am just about done updating That One Small Omission and More Than I Can Say for their re-release. The newly named That Missed Call is now undergoing major updates. Competing with the Dead Man is now moving closer and closer to its release. Phew!

Oh, yeah, and my serial novel, The Stained Glass Window, is almost ready for its release on April 15, 2021. I will release here it on this site, and on Wattpad on the 15th, and I think you will enjoy Lily’s adventures in this new book.

 

My Secret!

I am thrilled to announce that I will publish a serial novel starting in mid-April!

What does that mean? It means that on this website, and on wattpad.com, I will publish my newest novel, The Stained Glass Window, in three parts. The book will be free to all readers, and can be shared out as well.

Why do this? Sometimes it is fun to try something new. For a while now, I’ve been writing serial novels as a ghostwriter, and I decided I wanted to write one under my name and share it with all of you. The first section will release on April 15, 2021.