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?

Social-Distancing without Loneliness

In the Northeast, we are heading at warp speed toward late fall and winter. The time of year when it may be painfully cold to be outside. The time of year when we all tend to want to be inside by a fire, surrounded by friends and family.

But how do we do this when COVID still lurks around us? Especially if you have someone especially vulnerable in your household, how do you keep a sense of community or connections with the isolation?

Think about other ways to keep connections. Phone calls. Text messages. Emails. Zooming. Facetime. Shorter visits outside while bundled up. Postcards. Letters. Cards. Packages left on the front steps or porch. Messages written in the frost on the windshield. Get creative, people!

Our ancestors often went months, if not years, without seeing their loved ones close up. But they kept a sense of connection through other ways. Think of ways you can do the same, and share them with your friends and family — start new traditions that are safe and healthy, and use them to form new family folklore and rituals.

Let’s get creative, and make sure everyone feels connected to someone — let’s all do our part!

(And if you have great ideas — share them, please!)

The Teachings of Hattie McCat

In August, I had a strange dream. In that dream, I was told that it was time for us to get a cat again.

Again? Why now? It seemed like an odd thing to hear in a dream.

Our last cat, Sbeckles (yes, spelled correctly), died almost seven years ago. While she was the family’s cat, truly she was Sam and Ben’s cat. And even though she was smelly, not-very-smart, often dirty, and couldn’t purr to save her life, we were heartbroken when it was her time to transition onward because she was a living link to Sam. We had no intention of ever getting another cat after Sbeckles…

Then I had this dream. And we got a kitten. A teeny, tiny, light gray striped female kitten. We named her Hattie in a nod to one of our favorite Twiddle songs.

This was Hattie on her second day with us, when she fell asleep after figuring out how to climb stairs. That was our first teaching from Hattie — when you are tired, rest!

Time has passed, and Hattie has grown and grown. Each day we marvel at her learning and her personality. She brings us joy and laughter, and more love than we can express.

What else has Hattie taught us?

Exploring is good! This is Hattie exploring her own litter box…

She has also taught us to be in the moment. For example, when I am writing and she thinks it is time to take a moment to be with her, she will do anything to press that point, such as coming up under the laptop.

She has also taught us about play. Each morning, we have to play fetch with her, and she will bring us her mouse over and over, dropping it at our feet so we can throw it one more time.

She has taught us about companionship, and the benefit of being a quiet and attentive presence with us. This is Hattie keeping me company while I work.

That dream, telling us to get a kitten, was truly a gift, as was finding Hattie McCat.

The Coming of Fall

Vermont has experienced one of the warmest summers in our history this year. Frankly, Vermonters don’t do heat well. We are more a population that likes the cold. After all, we choose to live in a state that has a long, cold, snowy winter almost every year.

In the last few days, the weather has started to change. The mornings are cool. The late evenings call for a sweatshirt or a small fire in the fire pit outside. The squirrels are beginning to hurry hiding their food for the winter.

And the leaves are beginning to change. Not many of them, but a few. Tiny spots of red are appearing, and soon we will be in the midst of our glorious fall foliage. For the first time in my lifetime, I expect that foliage season will be a bit quieter than normal as Vermont is discouraging visitors due to the pandemic.

What does fall mean to us? It means spending time on stacking firewood, canning, freezing produce, buttoning up the house, making sure the gardens are cleaned, and so many more tasks. While I always welcome the coming of spring, I have to admit that fall brings with it the gradual slowing of the pace of life as we spend less time farming and that slow-down is welcomed.

What about you? Are you looking forward to fall and winter or dreading it?

Are you stressed?

Over the last months, I have heard so many people mention that they are feeling stressed. Why wouldn’t you be stressed right now? In the midst of a pandemic, we are seeing civil unrest, economic concerns, and so much more.

What can you do about it that doesn’t cost additional money or put you in greater health risk? Go outside, even if just opening your door and breathing deeply. Give thanks for what is good and brings joy or peace in your life. Send a note of love or support to someone, a text will do.

Life is uncertain, no matter whether or not we are in a pandemic. Change and uncertainty are hard, period. Finding those moments of peace that open your heart and soul will help keep you whole, and will let your light shine for yourself and others.

Breathe. Give thanks. Love. Go outside. Do all of them over and over again as many times as you need!

Kindness in Times of Stress

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Everyone seems to be stressed right now. Everyone. Children seem stressed by both the limitations in a COVID-19 world, as well as internalizing the stress of the adults in their lives. Adults are stressed trying to keep everyone safe, fed and housed. Masks are tiring and can cause stress as well.

With all of that, many (or all) of us have our emotions closer to the surface than normal. You can hear people snapping at others, whether at the grocery store or over parking spaces. And mask requirements? Everyone has as strong feeling one way or another. Toilet paper? Somehow, still, there seem to be shortages, leading to nasty encounters as people try to grab packages in stores.

So, we are stressed. Much is still uncertain. But one thing is for sure. In this time of stress, we all need to reach deep inside for our patience, gratitude, and for decency in how we treat self and others. Kindness is the key to all of this.

How can we help others? It doesn’t have to be big things or gifts. Text messages saying you care can go a long way to lift spirits. Thanking people when you call a company asking for information. Returning emails promptly and with gentle wording. Saying hello to others when you are masked as they can’t see your smile. Small actions can make a huge difference.

Kindness and relentless love, they are the keys to all of us getting through this stressful time with a sense of community instead in a fractured, angry manner.

Sending love to you all!

The Power of Theater and Television

In the last week, I have been moved to tears by both a theatrical performance (televised) and a television series (Netflix). That is the power of the written word brought to life in presentation art.

First, the television series. Season 3 of Ozark, specifically the story line about Ben Davis. Now, if you haven’t watched the series, you are probably wondering why it touched me. The answer is simple, it is the most realistic and painfully honest depiction of bi-polar disorder I have ever seen on the screen. As many of you know, my father suffers from bi-polar disorder, as did Sam. When it is well-treated and controlled, the person (and those who love them) have a relatively normal life. And when it isn’t, life is chaotic, funny, painful, sad, frustrating — and all of those feelings can happen in a ten minute space of time. It is a roller coaster you can’t truly understand unless you have lived it, but the actor’s depiction of it is the best I’ve ever seen. And the response of his sister? So painfully honest and realistic… The hope. The anger. The sadness. The guilt. The willingness to try one more thing. It is a brilliant depiction, and it is a gift to the world because it gives a brief glimpse through that window of experience.

The second was watching Hamilton. Thankfully, as I hadn’t seen it prior to last night, nor did I know much about the story line, a member of the group Compassionate Friends posted online prior to the television event that the depiction of the grief of losing a child was so well done that it could be triggering. I am so thankful to that person for sharing that information, as it meant that I had a pocket full of tissues with me. The lyrics about losing a child and life after was spot on, and painful to watch. Yes, I cried. But as I looked around the people watching it outside with us, most of whom hadn’t buried a child, I saw many tears snaking down their cheeks. No, if you haven’t experienced this loss, you can never really understand it, but that theatrical representation is just plain brilliant, and again, gives a glimpse through that window.

How fortunate we are to be able to see such incredible performances, based on such strong writing, so that we can see into the lives and emotions of others.