Apparently last year, and the year before, I didn’t blog or do a podcast episode relevant to Thanksgiving. I want to make up for that…because…I am grateful for a lot! I often express gratitude in response to something difficult I’m experiencing.
Moving to Mendocino in August of 2021 was a huge transition. So much intense preparation with sorting and packing through 20 years of stuff. Saying goodbye to friends, familiar locations, a healthcare infrastructure, and more.
There were many obstacles to hurdle. I had a series of falls which led me to become a user of walkers, wheelchairs, and scooters. Emotional upheavals in my personal life. But with all of these I would try my best to tap into the good things…the here & now where I was safe in my new home, surrounded with love from my partner and cat family, and living in a natural paradise of Redwood Forests and Pacific ocean cliffs.
It is hard, though, to problem-solve a physical and/or emotional challenge and stay in that place of gratitude. Are there really people who have mastered this? Or, have they not been faced with some pretty hefty challenges? I think one of the key skills I’ve learned over my life is to not feel like a victim. Everyone’s got their stuff to work through. Having a sense of humor helps. As does being aware of others and their painful struggles. Developing a sense of empathy. Being a witness to others pain.
But does this have anything to do with gratitude? In my rambling mind it does. My mind right now is a little different. My mind or brain fog? Big news — after 2.5+ years of being cautious and well-vaccinated and boosted, I tested positive for COVID last weekend. It was surreal.
Over the last few months we’ve gradually become more carefree by eating in restaurants. We’ve entertained but have made a rapid-testing protocol for visitors to our home. After the third booster I felt like it was okay to unmask at an event with good cross ventilation. I was having fun. I did have fun with all of those Zoom parties back in 2020…but…I missed being with people. So I’ve been rejoicing lately; feeling grateful for new friends here in my new home.
On Saturday I received an email from a member of our local Jewish community that several people at a dinner party I had attended, tested positive for COVID. There were close to 100 of us at a restaurant for a closed party; everyone had pre-tested. But, something apparently went wrong. It’s bigger than just our community; the schools on the Coast closed due to the outbreak.
So here I am with….ssshhhh…COVID. I feel like a pariah walking around the house masked but grateful that my partner tested negative. I’m grateful for the vaccines and boosters because this situation could have been so much worse off for me. Do you remember how many people died? I’m a little miserable yet grateful too. How do I juggle this paradox?
The doctor quickly prescribed Paxlovid which is free. To my surprise, the 3 pills 2x/day are big and the directions with the medicine and on the Pfizer website stress, “do not chew, break, or crush.” Hello!? What about those of us with dysphagia? Do you know how many people — doctors, friends, strangers — thought they were suggesting a novel concept of “applesauce?” Crushing pills in applesauce helps but my throat muscles aren’t fools; they know a big hunk of hardness from mush.
And so, I guess I’m grateful to still have a little spunk in me to consider this a new crusade for me and Big Pharma. I posted in a dysphagia support group on Facebook and one woman, who has a feeding tube, shared her story of calling Pfizer; they have no intention of creating a liquid form of the drug. I am grateful to align with others to shed light on this health inequity. Oy!
I guess this was a bit of a Thanksgiving Rant. Here are a number of things I am TRULY grateful for:
I can’t believe it’s been four months since my last post.
May was a big month – filled with the May Movement Challenge. Nearly every day of the month there was at least one – and in many cases multiple – free, accessible, online movement classes. It was amazing! If you missed it, here are some highlights.
Each Saturday we had a virtual pow-wow complete with a stretch session, an instructor teaching about an aspect of a movement practice, and someone sharing about their personal journey with movement. I am tremendously grateful to all of the movement instructors who volunteered to teach. Special thanks to those who donated prizes for the weekly Give-Away (Lockdown Comedy ticket, Month of Chair Yoga classes, Life Coaching Session, Magazine Subscription to Spirituality & Health, and a wonderful grand prize of Daily Harvest organic, plant-based meals.)
Daily Harvest has extended their discount offer. Use the code GLASSHALFFULL to get your discount.
Over 200 people registered for the inaugural event. We have a Facebook group for those who would like to continue their movement practice challenge.
So where was I during the months of June through August?
As President Biden might say, “Here’s the deal…” It’s one of those pandemic stories. I did a good job with quarantine. My partner and I masked, socially distanced, didn’t go inside buildings other than our home, and saw very few people in person. I became a Zoom pro. I amped up my exercise routine and took daily walks.
During one of our daily walks my partner and I discussed my changing needs. Although I remain ambulatory, walking presents challenges. Especially when stairs are involved. We live(d) in an old Tudor house with my office and the bedroom on the second floor. I was incredibly mindful when going up and down the stairs. It was exhausting.
So, on one of these walks, I said “let’s move.”
There was always the option of renovating our home to make it more accessible but I really didn’t want to disrupt the architectural integrity of the house. It served us well for nearly 20 years. Plus, the COVID-19 experience had an impact on my values. Nature is so important to my physical and emotional health. I wanted more of it.
If ever I was asked about my “bucket” list, all I could ever say was to wake up in the morning and see the ocean. Without going into the long story, I got my wish. We moved from Alameda to Mendocino, California. Ironically, in 2018 I wrote a blog post for Brain + Life about my love of Mendocino. At that time I couldn’t imagine moving to the country. With a chronic health condition? Don’t I need access to neurologists, cardiologists, pulmonologists?
I don’t know. I never needed to see a doctor during the first year and a half of the pandemic. My healthy lifestyle has enabled me to continue to lead a quality-filled life. My hope is that I’ve now enhanced that healthy lifestyle. The air is fresher, there’s an ocean breeze, and everything is just slowed down. So far, this household of two humans and five cats are enjoying it.
And I’m back with the Glass Half Full! Stay tuned for two new podcast episodes before the end of September.
For the last few days I’ve felt un-motivated. Lethargic. Not depressed but not my usual self. Sure, we’re still in a pandemic. Sure, it’s going to be awhile before I can get the vaccine. Sure, it’s damp weather which is never good for my muscles.
But, I think the catalyst for this malaise was finding out that a member of my support group died last week. His wife let me know the day after he passed. He and I were never close but we did have a connection.
The first year of a longitudinal research study I participated in across the country in Rochester, New York, he also participated in. In fact, I discovered he changed his date of participation to coincide with my visit. At that time, it creeped me out. It was a two-night hospital stay with lots of diagnostic testing and a muscle biopsy. The last thing I was interested in was making a new friend.
He apparently never felt rebuffed and continued to seek my friendship in and out of the support group. In fact, he even photographed my wedding, in 2008, to my female partner. This may have been a stretch for him since I assumed him to be of a different political persuasion than myself. This was before 2011 when marriage equality was federally granted; hearts and minds still weren’t quite ready yet.
Over the years I met his wife, and adult children, and felt a kinship with him though in the last few years I had a difficult time understanding his speech and he wasn’t keen on communicating via email or Facebook. But, I considered him a friend. Occasionally, he’d ask me questions related to my experience with specific myotonic dystrophy (DM1) symptoms.
During the pandemic I started doing virtual support group meetings every two weeks. He never joined but I assumed he got his support from his family which now included a few grandchildren.
When his wife messaged me, I wasn’t surprised. I was sad but in the last few years I’ve seen many of my support group members — and larger international community of DM1 friends — pass away. Mostly due to respiratory complications. I’m somewhat numb to it.
Since this man wasn’t much older than myself, I can’t help but experience his loss partially as a nail in my coffin. I responded to his wife with an appropriate response but I had to make sure she knew about the BioBank at our local research university. I know this was of great solace for other families when they lost their loved one so I have to assume others may find it useful.
And so, life goes on. Days pass and I feel more alive than having one foot deep six.
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I used to be a big fan of making New Year resolutions. In fact, a few years ago it was the focus of a podcast episode, New Year Resolutions: You must do the things you think you cannot do.
But this new year is different. We’ve all been through the pandemic. We’re still in the thick of it. Everyone is ready for it to end and return to some sense of “normalcy.”
My impulse to usher in the new year in a semi-celebratory way resulted in a Zoom event open to all of my Facebook friends. I can’t say it was a party but hopefully people had some fun; we did have a dance contest donned with PPE to the one-hit wonder song, Safety Dance.
But Zoom attendees were also treated to 15-minute segments of goodness and positivity to whet their appetite. Included were presentations by friends — Rumba with Tina, Yoga with Kristi, Sketching with Nancy, Encaustic Painting with Wendy, Meditation with Ellen, DIY Mushrooms with Jessica, and DIY Edible Cannabis with David.
During the 3+ hour event I also made use of the Break Out Room Zoom feature twice (no, Zoom.us has not sponsored this blog post but I’d be delighted if they would). I wanted smaller groups to engage in brief conversation as well as have the opportunity to meet new people.
The first Break Out Session discussed, “What have you learned about yourself during the pandemic?” While the second session had participants respond to, “What change are you willing to make to create a better world in 2021?”
Though a Zoom Host has the ability to jump from room to room, I chose to stay put for any newcomers. Once people returned to the main Zoom room, I asked how the discussion went and people seemed pleased with their experience.
And now I will respond to those prompts.
What have you learned about yourself during the pandemic?
I have resilience. Don’t know how I got it, but I do, and I’m glad. I need to have many different types of social connections and I’m okay with these being virtual. I am risk adverse and very obedient of public health mandates. Knock on wood, I have been very healthy during the pandemic. Sure, I miss eating at restaurants, going to movies and concerts, and traveling but having a robust respiratory system wins out.
What change are you willing to make to create a better world in 2021?
I want to let go of hurt feelings and resentment and always come from a place of love. I want to accept that I may never understand someone’s behavior and/or intention. I want to do what I can and use my talents to help people feel connected to each other.
Granted, this has been a very difficult time for everyone. We have all been affected in different ways and to varying degrees.
But, I’m not a fan of the memes I see posted on Facebook and other media outlets, i.e. 2020 was a dumpster fire of a year as well as the more expletive-laced sentiments.
I want to view 2020 as a test. This entire world went through something scary and horrific together. Hopefully, we won’t have to experience another pandemic like this in our lifetime. But, we will go through difficult times.
Whether it’s a local disaster, the loss of a friend or family member, or our own debilitating physical or mental health…we are sure to face adversity again.
How will you respond?
Well, not really. No podcast episodes for the month of May due to a very bad computer. Naughty as heck. She/he could have reminded me of their age (6 years!) and I would have paid attention…treated her/him as a respected elder…gone easier on her/him. But no! Poof!
So, I’m waiting on a new one. And like everything else now, it’s moving slowly…from China, or Japan. Who knows? Not much else I can do but wait.
But for YOU…I’ve got some YouTube videos: Quarantine Life, videos related to Movement & Exercise, or a cooking demonstration for those with swallowing difficulties.
Maintaining a regular exercise routine has been vital for my mental and physical health during quarantine; I put together this list of mostly free or low cost online resources.
I’ve written a few COVID-19 blog posts: How I Cope with COVID-19 and How I Exercise at Home with Myotonic Dystrophy. I’ve even participated in two webinars related to maintaining good nutrition during the pandemic: Food Preparation for the DM Community and Practical Strategies for Eating Well and Keeping Immune System Strong during COVID-19.
If you want some evergreen, relevant podcast episodes, you might consider starting a mindfulness or meditation practice. Or prayer as a healing modality, which I believe can be akin to meditation.
So many things can be therapeutic; you know laughter can be the best medicine? Have you considered Sound Healing? I’ve seen several practitioners taking their work online.
My mental and physical clarity is enhanced by my daily walk through nature. Even if it’s just around the neighborhood. Every day I discover new natural and human-made curiosities.
One of my natural relaxing remedies — and the most downloaded episode of Glass Half Full — is explored here.
I hope you’re taking good care of yourself. Personally, I’m in it for the long haul; I’ll wait for that vaccination. I’ll miss hugging, traveling, and eating in restaurants but…I’d like to be around for awhile. Take care XOXO
I feel this sense of uneasiness. It grows each day. I’m grateful for when my mind and attention are actively focused on something other than the coronavirus.
Then a news alert pops up on my watch or cellphone. Or I overhear a conversation. Or there’s an email message from my healthcare system. Or I tune into the news right before my near nightly indulgence of The Daily Show which entertains and slowly lulls me to sleep. It’s good to catch a few laughs after the news so I can re-gain my clarity.
What is within my control to protect me? According to my healthcare provider and the CDC, “wash your hands.” Well, I’ve got that one down even though I refuse to sing Happy Birthday during the process.
I’m avoiding crowds and I cringe if I hear someone near me cough or sneeze. I’m a little hesitant to hug friends now when I see them…but I have. It pops in my head when they’re approaching me for a hug…should I be doing this? This is the hardest part. I love connecting with people and don’t want to view other humans as pariah.
But we know so little about this virus. People are walking around, asymptomatic, and they could be carriers. As persons with chronic health conditions, we are more vulnerable. Some of us have compromised immune systems. I know a common cold can wipe me out and take close to a month for me to get back to my level of optimal health.
I wouldn’t call it a widespread panic but personally, the uneasiness is like an internal itch that tenses my nerves. It doesn’t help to have government leaders who lack knowledge and compassion.
I have no great words of wisdom to convey. I’m scared and I suspect many of you are too. I’ll take all of the sensible precautions.
A brand spanking new podcast episode will appear…hopefully before the end of the week. It will be Food = Medicine: Mushrooms. But, for now…check out these Food = Medicine podcast episodes:
An interview with Sandor Katz – the Fermentation King
Food = Medicine (1) – featuring two mostly plant-based consuming friends, one with DM1, the other with DM2
Food = Medicine (2) – an interview with Jill Nussinow, R.D., The Veggie Queen
Food = Medicine: Cooking with Love – featuring a chef who prepared special foods for her father with Parkinson’s disease, an organic farmer, and a chef who prepares foods with cannabis
Selective memory? I remember many things. Like that amazing dinner we had last night at a posh vegan restaurant somewhere in London. I even remember the name — Vanilla Black. But I have no idea what I had for breakfast, lunch, or dinner three days ago.
It probably wasn’t as memorable. Not as pretty. Not as tasty. And maybe not as healthy.
Depending on our metabolism, our digestion may move slowly…sluggishly…so it’s prudent to have a sense of what you eat, how much, and when. How can you know what may have disagreed with your system if your memory isn’t always keen?
Last year when I started using the Health Storylines app, I took quickly to the Food Diary feature. Having the app on my home desktop computer as well as my smartphone allows me to capture my meals quickly without relying on three-day old memories.
The feature also provides space for you to record any type of physical reaction to the meal.
Another way I use the feature is to scan how I’ve been eating the past few days — have I consumed enough greens, fruits, and other healthy whole foods? Am I limiting my intake of processed foods?
Because I can’t rely on my memory. 😉