How do you fight?

As you know, in May we got the very unexpected news that my husband has ALS. Besides the fear, uncertainty, logistics, the massive learning curve, and the stresses of the parking garages, there were the cold, clinical statements of “There is no cure.”

We immediately started asking questions about other ways to help improve health, such as acupuncture, nutrition, massage, and others. Each time, we were greeted with, “It can’t hurt, but…” The voice would trail off, giving the excruciatingly clear message that those things wouldn’t hurt, but weren’t going to help either, at least in those experts’ minds.

That didn’t sit well with me. We need some way of trying to fight this disease! So, we are fighting. Reasonable, regular exercise? Yes! A high-fate Keto diet based upon the one used to treat other neurological diseases? Yes. Acupuncture? Yes. Meditation? Absolutely. Work on reducing stress? Yes.

We get that there isn’t a traditional Western medicine cure, at least not yet. But there are a lot of other things we can try to improve overall health and work to give us time for a cure to be developed, and improve the overall quality of life.

For our dear friends and family, you see something online or hear of someone who is (or did) beat the odds in terms of longevity with ALS, send us the information! We love hearing ideas and will research them right away. Never think that asking a question or suggesting things will bother us, just like when we love hearing Sam’s name, when people face straight-on with us, it helps. And every scrap of an idea helps us fight!

We love you all, we appreciate you every single day.

Why?

Yesterday morning I awoke as early as I normally do during the school year, to make sure I was on time for a meeting. Stepping outside to walk the dog, I was shocked when Fluffy 2, who had been on the run for over a month, joined us for the walk. Strolling across the lawn, she was less than two feet than the dog, talking the whole walk. It was if she was telling us all about her adventures. When we got back to the house, I went inside with the dog, then realized she was still standing by the door. With a handful of cracked corn, I sat on the walkway, hand-feeding her. She ate and ate, talking all the while.

Finally, it struck me. She was waiting for me to walk her back to the coop. Together, we walked to the coop, and I opened the door, and she happily joined her little flock. For weeks and weeks, she has wandered the area, living somewhere unknown. Now she was home.

Why did she leave? Why did she come back? Why did she suddenly decide she wanted back with the others? Joining them, she cooed with happiness, as did the others. She was back!

I will never know why she took off, or why she came back, but I do know that Fluffy 2 deciding to go on an adventure, and return, makes me smile.

The Lady Fingers

Tonight we are out of town, waiting for another appointment on our new and unwanted journey. Wandering into the Whole Foods to get things for dinner that are on the approved eating list, I saw a package of lady fingers. The small, dull mini-cakes that you put into desserts such as berry trifle. And grief hit me hard. Unexpectedly. In a crowded supermarket, with no place to go with it.

For Sam’s high school graduation celebration, he didn’t want a cake. He wanted berry trifle, loaded with pudding and whipped cream, decadent, and just for him. We did have a cake, but that was really so we could write “Captain Sam Francoeur” (you have to read the book if you want to know why we needed to do that) on it. Two days before the party, I went to the store, and no lady fingers. They always had lady fingers, but not that day. The nice bakery clerk called around to other stores and found some, and early the morning of the party, I drove to the store to get them so I could make the trifle in time.

The lady fingers made me so sad tonight, then they made me smile. How thankful I am now that I kept going until I could make him that special dessert on his special day — if I hadn’t I surely would regret it now.

Tomorrow is Sam’s 26th birthday (forever 20), and I am sure that somehow, he will have berry trifle with lots of whipped cream.

 

The Divine Kick

Last night, I had an unfortunate experience, one that made me seethe with hurt and anger, and disappointment. It was a callous comment made by someone who should know better about an overdose situation.

Later, as I posted about this experience, and how I had chosen to respond to it, a friend made the comment that she was thankful that I had been there to bear witness to the incident. Another person today said that she thought there was a reason I was standing there when I was yesterday.

That got me thinking… Maybe that was the case. Maybe there was a reason I was standing there! Yes, there was. In the last two months, as we have struggled with Paul’s diagnosis and how to juggle all that comes with it, I have stepped back somewhat from my advocacy about substance abuse treatment and prevention and stepped back from writing as much about how society vilifies those suffering in this way.

So, I’m back! Every single person struggling with addiction, nearly overdosed, or overdosed, is someone’s child. Maybe someone’s sibling. Someone’s grandchild. An aunt or uncle, a friend, lover, a father or a mother. Every single one is a human being deserving of love, deserving of dignity, deserving of support and options to get help. No one gets up in the morning and says, “Geez, I want to spend my day trying to get high, ruin a few relationships, put myself in mortal danger, and then get ready to do it all over again tomorrow” No one does that! We need to stop acting like that is the case.

As often has happened on this journey, something happened last night to give me a reminder that part of my purpose on this earth is to be a voice on this issue, and as much as it hurt last night, today, I am thankful it happened because it gave me a kick to get back to work.

The Wading Pool

Yesterday, we held a family get-together to celebrate my husband’s birthday. As it was unbearably hot and humid, we had picked up a little wading pool for our grandchildren and set it up just before they arrived.

Within minutes of arriving, they wanted to be in the pool and especially wanted to splash Grandpa. Then, our grandson kept telling me that he was going to take the water out of the pool because he was going to take it (the pool) inside the house. I kept explaining that we weren’t going to take the pool inside, and he kept scooping water until he finally asked me “Why?” Why couldn’t the pool go inside the house? Really, Grandma, wouldn’t it be fun to have a pool in the house? It made me laugh, he was so insistent that it would be a good idea, and I was so sure that it was a bad one. Ultimately, the pool stayed in the yard, but we had an awful lot of fun both with the splashing and the conversation.

It made me think that one of the wonders of childhood is the lack of rules and expectations in thoughts — in his mind, I was the one who wasn’t thinking clearly, and maybe he was right!

Ethan Allen and Fluffy 2

Many years ago, twenty-one to be exact, Sam got a baby bunny. Being Sam, he named him after Ethan Allen, a Vermont hero. Sam loved Ethan Allen with all of his heart, and for a little boy, he took pretty good care of him.

Then one day, Ethan Allen escaped from his outdoor hutch. Sam cried and cried, and several hours later, Ethan Allen showed up on the lawn, and we were able to drop a laundry basket over him, catch him, and put in back in the reinforced hutch.

Then he escaped again. And was caught again.

And again, and again and again. Each time, it took longer to catch him.

Finally, we all decided that just like his namesake, bunny Ethan Allen was fighting for freedom, and he deserved to be free, and we let him live as a free-range bunny.

Over the years, our local population of bunnies clearly had some genetic input from Ethan Allen. Our wild bunnies have strange coloring and look more like him than their fully wild cousins. When we see one, we still laugh about it.

Then we got the laying hen, Fluffy 2. Beautiful and somewhat aloof from her chicken peers, Fluffy 2 loved to be carried and held. Then one day she wouldn’t go back to the coop at night. After a few days without a sighting, we assumed she’d been eaten. Then she appeared, then disappeared, again and again.

As of this morning, it had been almost three weeks since our last sighting. We had talked about how we thought she finally was gone for good. That was, right up until we started pulling up the driveway and she was standing by the blueberry bushes looking at us. We laughed, saying it was Ethan Allen all over again…

Any day now, we expect to see little Fluffies running around because clearly, she has a secret life going on now.

Good for her!

The Natural World

Over the course of my life, and especially during our marriage, we have been fortunate to travel a fair amount. We have seen many of the great cities of Europe, traveled around some (not as much as we’d like) in the United States and Canada, and seen parts of Mexico and Grand Cayman.

In many of those trips, we visited cities. No, don’t get me wrong, I love visiting cities. I love the diversity, the languages and cultures, and especially the museums.

This trip was one without cities. We visited towns that had no roads in or out, everyone needs to arrive and depart by boat or plane. We saw the natural world every minute of every day. Glaciers, mountains, the ocean, bald eagles, sea lions, porpoises, humpback whales, harbor seals, and sea otters. And all of it was glorious! It was far quieter in terms of noise than any trip we’ve taken other than to Gran Manan.

The quiet and beauty did us a world of good. We meditated without realizing it, and gave thanks for the glory of the beauty. I simultaneously hoped for one of the glaciers to break off a little piece so I could see it, and begged the universe to keep those glaciers healthy and whole. I was awed by the facilities of our national parks, their staff, and the natural world they protect — and I gave thanks for the forethought of those before us who protected these lands!

One of the park rangers asked us to think about what moments on this trip made us emotional, and to carry that power of the emotion back with us when we went home. For me? The glaciers made me very emotional. I was so awed by their size and beauty, so thankful for the opportunity to see them, and so greatly saddened and angered that we (as a species) are so negatively impacting the environment. I saw a “dead glacier,” one that no longer gets the snowfall it needs. I mourned for the loss of that glacier, and I mourned for the fact that future generations may never get to see a glacier in real life.

I have always believed in the power of travel. It teaches us, renews us, and impacts us in ways that are hard to explain.

As you travel, think about that question — what have you seen that has impacted you emotionally?

A Writer’s Brain

I have never understood how my writing brain works. Sometimes, I can’t stop writing — the words pour out of my brain. Sometimes, especially when stressed, the words dry up. In the past two months, as we have adjusted to our new reality, my fiction brain completely deserted me. No ideas, no joy in writing, nothing. Yes, I did finish the final editing on novel four before submitting it to the editors at my publishing house, but that was it for fiction.

Sitting on a plane yesterday, my fiction brain came back. Was it the altitude? Was it the taking a step back from the hectic pace of our life lately as we juggle all of these stressful appointments? Was it the hunger from the lack of food on the plane?  I don’t know what the cause was, but the result is that my fiction brain is back in a major way. Yay!

Love All Around

This weekend we traveled to Connecticut for a book signing event in Mystic (thanks to Bank Square Books and Sift Bake Shop). It also was a time to reconnect with family, see someone who grew up with our oldest son and to visit beloved landmarks.

In May of 1992, we honeymooned in Mystic. Several years ago, we returned to Mystic to stay while our youngest participated in the New England Drama Festival. Both of those times, we wandered through Mystic Seaport, loving the old buildings and ships.

This year we returned for the book event, knowing we also wanted to visit the Seaport again but also hoped that we could get together with family, and see the owner of Sift, who grew up just down the road from us. By the end of the day today, we had seen family (one cousin who Paul hasn’t seen since 1991!), shared hugs, laughs and tears, great meals, hung out at Sift and visited with Adam, and just felt the love all around us. I met new readers and made some new friends. Sitting at the Seaport, we met someone who is related to one of my favorite teachers from high school. What a small world!

A little sunburned, a little tired, a little over-emotional, it has been a wonderful trip full of love, love, love.

 

Gratitude? Yes, gratitude.

Today I was struck again by the amazing people in our lives, who bring us love and support every single day. It made me reflect on how fortunate we are.

I am thankful for the gorgeous sunshine. For grown (young) men who still give hugs. For sheep who love to cuddle. For glasses/contacts that allow me to see. For the garden growing. For friends who send text messages to check on us. For friends who ask the hard questions. For friends who come bearing french fries. For people who openly say, “I love you.” For friends who will simultaneously laugh and cry with us. For the smell of the freshly cut hay. For my husband who protects me and comforts me. For our grandchildren thinking we are funny. For love. I am thankful for love.