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.

And I cried…

After Sam died, I wasn’t sure if I would ever stop crying.

For weeks, I cried daily, sometimes multiple times in one day. We all cried like that. Sometimes it would be slow, soft crying, with tears running down my cheeks one at a time. Sometimes I cried so hard it hurt. Sobbing, really. Tears would stream down my face, wetting my shirt, running into my mouth. Snot would stream down as well, and eventually, my eyes would swell almost shut from the process.

Over time, the crying slowed, then mostly stopped. Not that I wasn’t still grieving, I will grieve for the rest of my life.

Then, in May 2019, my husband was diagnosed with ALS. And I cried. We cried. Again, sometimes slow, quiet tears. Sometimes loud sobs. I cried in anger. Frustration. Disbelief. Grief. Fear.

Slowly, the tears mostly stopped. It’s not that as we cross over some milestones in this process that I don’t cry, because I certainly do, but not like I did in the beginning.

At first, after the diagnosis, I joined Facebook groups about ALS. Less than a week later, I had to leave them. The daily list of hell people were going through, or their deaths left me terrified and sobbing.

Then, I rejoined, and I found hope, a sense of community, and practical answers to my questions. Suggestions. Humor.

And love. Relentless love.

Those groups, those posts, became a daily part of my life, and still are. They keep me focused on love and advocacy. They remind me that no matter how daunting the situation, you can always find love and humor, and always, always find something for which to be grateful.

In the course of this, I started following one particular pALS (patient or person with ALS). A devoted family man, a teacher, someone with a great sense of humor. Almost every day, I would tell my family about one of his posts. He talked about the daily progression of ALS with brutal honesty and humor, as did his wife.

Over the last few days, I learned he is about to transition to his next phase of existence in this universe. Logically, I had known that for a while. But reading the posts announcing his entry into the last phase? I cried.

No, I didn’t cry. I cried long enough to tell my husband and youngest son why I was suddenly in tears while we were watching The Voice.

Then I sobbed. I sobbed for the injustice of the FDA loudly and clearly showing they don’t care about ALS patients. I sobbed for husbands and wives, losing the loves of their lives. I sobbed for children robbed of parents and grandparents. I howled through my tears for siblings, watching their brothers and sisters wither away.

Finally, the tears stopped, and I sat and gave thanks. I gave thanks for a husband who understood why I was crying for someone that I’d never had the chance to meet in person. I gave thanks for a son who just quietly hugged me when I came back to the TV room. I gave thanks for friends and family who are with us every step of the way.

No matter how deep the grief, the sadness, there is always something that brings light and hope, and for that, I am so grateful.

 

The Big News!

I am thrilled to announce (oops, I announced it on Twitter and FB last week) that my next novel, Competing with the Dead Man, will be published in late 2021 or early 2022 by Between the Lines Publishing.

Finally, Boone, from More Than I Can Say, comes back to the page. Will Boone find true love, or will he lose to the dead man?