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?

A Very Belated Happy 2021!

What a long, strange almost two months it has been since I last posted here…

The holidays were unique. Quiet, poignant, different, but beautiful. We enjoyed socially distant visits with family and friends, and made some new traditions.

Then we looked forward to the start of 2021. We thought that perhaps the darkness and sadness of 2020 would be left behind. Unfortunately, the events in D.C. on January 6th shook us to our cores, leaving us emotionally battered and fearful for the future, and COVID continues to ravage our people.

Thankfully, the rest of January had more calm and hope. Bernie memes made us laugh, and a new puppy joined the family. Love, laughter, and hope seem to prevail.

Now we wait for COVID vaccines. Getting opinionated here, I can not for the life of me understand why someone with ALS wouldn’t be at the top of the list for the vaccines after essential workers. But that is not the case in Vermont, so we will wait as patiently as we can, staying home and being as careful as we can be.

Spring is coming, and we can’t wait. Garden seeds have been ordered, and we are already sketching out the planting maps.

As we look forward to the rest of 2021, all we want is love, peace, hope, treatments for ALS, laughter, and time with loved ones. May you all have a 2021 filled with love and hope!

Love Chicken-Style

In the last week, we have lost two members of our family community. Our dog, Sobaka, and our oldest hen, Red, passed away. Both had lived long, long, long past the normal lifespans of their respective species, but we still feel the losses deeply.

Humans often have the misguided idea that only humans feel emotions, and only humans have friendships.  Baka, as we called him, and Red proved that wrong. Over the last nine to ten months, they spent countless hours together. When young, Baka would chase the chickens. By this spring, he was ready to just hang out with them. He’d slowly wander out to see the chickens, and he’d find a sunny spot to lie down in the grass, and Red would come over to sit with him. Baka had lost much of his hearing and sight, and Red was asthmatic and often a bit confused where she was, but they formed a deep and trusting friendship.

Last Friday, Baka was nearing the end of his life and he clearly knew it. He walked down to visit the sheep and Ellsy, then laid down next to their fence. Red came over and sat with him, the sheep laid on the other side of the fence, as if they all knew it was his time. When I walked him back up to the house so we could take him to the vet’s office, Red followed along for as long as she could.

That night, when I went to bring in the chickens, Red was clearly sad. She came to stand with me, wanting to pet her, which I did for a long, long time. She was grieving.

Monday, Red passed away. I can say it was from old age. I think it was from a broken heart. Her friend had left her, and she was ready to go join him.

I openly admit I cried a second river that afternoon. Red had been a constant part of our lives since before Sam died, and while she hadn’t laid an egg in years, she was a sweet friend. Losing two of our creatures who Sam had loved and known also hit harder than I can express. But, I can say without hesitation, that I am thankful for all that both creatures taught us.

They loved each other.  They proved that emotion and friendship are not limited to humans, and I am so glad they shared themselves with us.

Being Truly Pro-Choice and Pro-Life — #EndALS

I am unabashedly pro-choice. What do I mean by that? I mean that I believe every single one of us should have the right to make decisions about our OWN bodies. And while that has always been my stand, I now see the pro-choice movement in slightly different terms, and I am begging anyone who is both pro-choice or not to stand up and make their voices heard.

What the heck am I talking about? I’m talking about ALS. Lou Gehrig’s Disease. Amyotrophic Lateral Sclerosis. The Glass Coffin disease, so called, because over time people lose the ability to speak, breathe, move, but they continue to be able to see, feel, and hear.  A disease that is 100% fatal.

100%.

Let that sink in for a moment. Even if you get diagnosed with cancer, even later stages of cancer, some doctor somewhere says there is hope for a cure. With ALS? No way. They immediately tell you that you have a short time to live, there is no cure, no real treatments right now, and that nothing you try to slow the monster down will do much of anything. Literally, they tell you to get your affairs in order, and do what you want with the little time you have left.

100% fatal.

Yes, there are really two FDA approved treatments out there, Riluzole and Radicava. Both, the great current options, slow the progression (maybe) by a couple of months.

No one is really gunning for a cure right now for ALS. But there are several very promising treatments out there that may help more dramatically slow the progression, or maybe even help with improving the situation. Not a cure, but hope. Hope that they will buy enough time for a cure to be found.

And where does the pro-life, pro-choice come into this? Those two treatments (Nurown and AMX0035) are working their way through the approval process, but so slowly that each day, we watch the death list grow of those for whom time ran out. Nurown has completed Phase 3 trials. It’s been around for years, and yet it hasn’t been approved by the FDA.

Why not? Because they are too busy with COVID? Sure, that works if you only look at the last nine months. Because the number of ALS patients is too small to care about at the federal level? Maybe.

I don’t know what the hold-up is, but it has to stop. 100% fatal.  So give the ALS patients the right to try these treatments. Heck, if the big pharmas are scared of lawsuits due to side-effects, let us all sign non-suing clauses.

Every single patient with ALS will die without new treatments. Every single one. And not just die, live through hell on the way. Give them the treatments — they have nothing to lose by trying, and everything to gain.

So, if you consider yourself a pro-choice person, get off your rear-end and help us. Email your state representatives and beg. Email or tweet to the FDA. Make noise. Donate directly to research hospitals such as Mass General Healey Center. Raise awareness. Do everything you can!

And if you see yourself as pro-life, do the same thing. These are lives with us right now, shouldn’t we be trying to protect them?

Yes, for me it is a personal battle. I will fight with everything I have in my for Paul, but I also fight for all of those who went before us, with us now, or will have this disease in the future.

ALS (MND) patients deserve so much better — help us get them the treatments they so desperately need.

 

 

We are on YouTube!!!!!!

I am thrilled to announce that we now have a YouTube channel! Hattie and Hila’s World  https://youtube.com/channel/UCyluj-22BjvMFc5vLplfAlA premiered on October 26th.

What will happen on our channel? Some silly things, like videos of Hattie and Hila just to make people smile. Some hopefully heartwarming things like telling the story of how Hila supports and loves her Paul. Some informational pieces like learning about the writing, query, and publishing process. Grief and hope will always be discussed. Maybe some pieces about fiber arts will be included. Definitely some pieces about farming and gardening will sneak in too.

And yes, it also will be a way for us to raise awareness about ALS and the fight to get treatments that work for ALS, but hopefully not in a depressing way. Instead, we want to showcase the incredible gains being made, and the hope and spirit of the ALS community.

We hope you will visit the site, and subscribe to our channel!

Sending love to you all.

Yes, I Still Am Hopeful

The world seems to be a dark, scary, angry, disease-filled mess right now. People are sick. People are angry. Afraid. Anxious. Frustrated. Isolated. At odds with others. It is a mess!

And yet, I still am hopeful. Why? Because I see the power of the next generation. I see the power of the under 40 crowd, who give their time, money, and energy to making the world a better place. They care about each other, and those older than themselves with a fierceness and honesty that is refreshing. Not love because they were told to love others, but because their hearts and minds are open and they love relentlessly and unconditionally, but with honesty. They give me great hope.

Look around you. See the youth moving and changing the world. Give thanks for them, honor them, and those of us older than them, how about we try to make them proud of us instead of the other way around. The world we gave them is a complete and total mess, and yet, they are trying to fix it — and it’s about time we join them in that quest.

They give me hope — great, big hope.

 

The Power of a Thank You

This morning, my day started with a thank you. A thank you that means more than I can adequately express, because it was so brutally honest and heartfelt, so unsolicited, and so unexpected considering where and when we were standing.

“Thank you” can be two of the most powerful words in English, especially when it is truly meant. They show that you are connecting with another person, and recognizing that person’s efforts. It takes you outside of yourself, and gives recognition to another.

I often write about gratitude, when I practice my daily ritual of thinking about my day and either speaking (to myself) about the people and things that impacted my day in a positive manner, or I write about it. But sometimes I forget that standing face-to-face, or voice-to-voice and saying “Thank you for…” to a person is a truly magnificent thing to do.

Have you thanked people in your life recently? Truly thanked them?