Over the past month there’s been some chatting — with a Professional Patient and a few virtual friends sharing how they cope with the holidays.
I noticed a Facebook posting from a high school classmate identifying himself as a professional patient so naturally I was intrigued. In this video I ask David Weiss all about his 11 years of experience as a professional patient which includes giving feedback to first- and second-year medical school students, participating in tests doctors must take before the Florida state boards, and teaching doctors how to give a male examination using his own penis and prostate.
If you missed the December podcast, you’re welcome to listen or watch it on YouTube; the participants did dress quite festively. Joining me are Andrea Klein with collagen 6 congenital muscular dystrophy, Janice Laurence with Charcot Marie Tooth neuromuscular disease, and Roma Leffmann who advocates for people with acquired disabilities as a stroke survivor. Together we discuss everything from dysphagia, incontinence , single life, ableism, and gifting.
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:
The lyrics to Don’t Laugh at Me speak to anyone who has felt like an outsider. Whether or not you were bullied as a child, this song will likely resonate with you. Steve Seskin, the singer-songwriter, and his co-writer were first inspired by a young girl’s experience of teasing in grade school. But, the song encompasses inequities experienced by those living with physical and developmental disabilities as well as people experiencing hard times.
A few months ago I [Leslie] first heard the song in the online dance class, Rumba with Tina. Many of the other virtual dancers were familiar with it and sang along. I just cried. After the class I googled the song title and discovered I knew the songwriter. Steve’s wife, Ellen, has been a participant in the Northern California Myotonic Dystrophy Support Group I facilitated. What a small world!
Steve’s songs have been recorded by recording artists such as Garth Brooks, Reba McEntire, Waylon Jennings, Tim McGraw, Colin Raye, and Mark Wills. Visit Steve’s website to learn more about his music and check out the organization Steve is involved with: Operation Respect.
Liz Ann Kurdrna, Pilates instructor, feels like her emotional recovery from a rock climbing injury is ongoing yet “knowing that I have to show up for someone else…by teaching…it helps. It helps you uncover the stronger part of yourself.”
In this podcast episode, Liz Ann talks about her lifelong love of rock climbing as well as her participation in other outdoor activities such as swimming, snow skiing, and cycling. In Montana, where she’s lived for the past 20+ years, she teaches online and in-person Pilates. Liz Ann has competed in local Triathlon events with the Challenged Athletes Foundation.
In this video Liz Ann demonstrates a few Pilates Breathwork exercises.
To learn more about Liz Ann’s online classes, check her website. You can register for her Seated Pilates class sponsored by BORP.
I remember years ago when I had a Toyota there was a dealership I’d go to regularly for oil changes and other car repair. You know how you drive into a big open space, like a warehouse? Well, there was a huge banner hanging inside that said SMILE. And maybe it had a smiley face. It kind of pissed me off; like it was a command – come here and spend more money than you need to and dammit, you better have a big fat smile on your face as you wait an inordinate amount of time to be waited on by surly people.
And maybe Bobby McFerrin’s song was popular around that time or isn’t that song always in vogue – DON’T WORRY, BE HAPPY! I’ve liked the song; hey, it got everyone to know who Bobby McFerrin is but people in San Francisco knew of him and his leadership in a 24-hour acapella song event at Grace Cathedral on New Year’s Eve. That was something to be happy about.
But I digress. No one wants to be forced to smile or be happy.
A month or so ago I was on a Zoom chat with one of my new Mendocino friends. We’ve bonded over having chronic health conditions. Hopefully you’ll meet her soon. I can’t recall the context, but she used the term toxic positivity. I’d never heard that term before. But I remember it perfectly described what we were talking about.
And then I started seeing the term in other places. You know how that is, something is unearthed and then all of a sudden, it’s everywhere!
So, skip forward to a week or so ago. I was telling someone about a virtual support group I had facilitated. We were sharing coping tools for the holidays which can often be so bittersweet. Especially when you have a chronic health condition and you’re around friends and/or family that just don’t get your condition and challenges.
It was a good meeting. Several of the people in this group have never attended a support group meeting…and are a little shy about sharing. But it was going well until this one gentleman started saying something like how he didn’t understand why people weren’t happy or joyful. He went on to share how his family and friends help him and he’s just jolly jolly jolly. He, I seem to recall, said something to the effect of DON’T BE NEGATIVE, I don’t like all of this negativity.
In my 23+ years of facilitating support groups I have vast experience of dealing with negative people bringing a vibe down but rarely had I experienced this kind of behavior.
It wasn’t a downer meeting…just people honestly sharing what seems to be a difficult time for many people. Like, you don’t have to have a debilitating progressive neuromuscular disease to understand how the holidays are bittersweet for many.
So, as I said, I was sharing this experience with someone in the patient support community, and he said, “you know I think this is an example of toxic positivity.”
According to the Mental Health Association in Delaware:
With toxic positivity, people’s negative emotions and experiences are downplayed and disregarded. Instead, only positive feelings and experiences are encouraged.
Apparently, this has become more of an issue during the pandemic.
The website goes on to say:
Toxic positivity statements can be directed towards others, stated by others, and aimed towards oneself. Some signs of toxic positivity statements may be dismissing emotions, minimizing someone’s experience, giving one’s perspective instead of validating someone’s emotions, shaming someone for expressing frustration, and brushing things off. Some examples include:
Did you hear that one Mr. Bobby McFerrin?
Okay, I am guilty of using the statement “It is what it is.” But in defense, I’ve used this for minor setbacks like when our cat Abner knocked over our tree and some precious ornaments broke. I was mad for a little bit but my partner was sad and cried. I said It is what it is.
A more compassionate response, as I’ve learned, would have been:
But what about the support group? How do I handle the perpetrator of the toxic positivity when it’s not me?
I think I mentioned to Mr. Positive in Your Face how I’m a big proponent of positivity – after all, I have a podcast called Glass Half Full – but it’s also very common to have a difficult time with the holidays. I cut him off too…because…wouldn’t you know, Mr. Positive attempted to dominate the conversation. I wonder if he listens to my podcast. Hmmm.
In addition to the website for the Mental Health Association in Delaware another high ranked Google search result was a podcast on KQED. The episode focuses on teachers who have had a particularly rough time during the pandemic – having to change curriculum for remote learning, having a hybrid setup with in-person teaching on one day and remote the next day as well as having real fears of dying and/or separation from their child if exposed.
In some communities’ teachers were force-fed positive phrases and instructed to do breathing exercises. One woman talks about being shown a TED talk with psychologist Kelly McGonigal talking about making stress your friend. The podcast narrator defines toxic positivity as focusing on the positive and ignoring the negative. This mindset has caused a lot of teachers to feel guilty, stressed, and overwhelmed.
Ironically, McGonigal is one of the psychologists often featured on one of my favorite websites – the Greater Good Science Center at UC-Berkeley. I decided to see what articles The Center had about toxic positivity. The search results displayed one with the entire phrase; there were many results for “toxic” or “positivity.” The one result was a comment from someone in response to a “Finding Silver Linings” practice. The truncated comment included, “I do wonder how this process starts touching on the territory of toxic positivity. When we’re frustrated and discouraged, how can we own the feelings and…”
So, toxic positivity has not yet merited much attention from the Greater Good Science Center. Interesting.
I know how hard it is to hear about someone’s suffering. Even if you are compassionate, you might not know what to say. And often there isn’t any magic phrase to ease their discomfort; maybe they just want to be heard, or witnessed?
But let’s all agree…when we’re hurting there isn’t anyone that can whisper a few words to snap you out of it. DON’T WORRY, BE HAPPY! Wow, if that worked we’d have no need for psychologists, therapists, counselors, alcohol….You get the point.
I’m still all about tools and resources to help manage difficult physical and emotional issues. But sometimes you need to sit with something and wait and find the right path out.
So during this holiday time, please be gentle with yourself as well as others. If someone is hurting, ask them if you can help but don’t assume that what works for you will work for them like a magic pill.
When you’re told you have a tumor the size of a grapefruit growing in your brain, and you have it removed, and you live to tell the story about it without experiencing profound disability, then you have a lot to be grateful for.
That’s what happened to Amy. Learn more about Amy’s health story in this podcast episode. She had no idea about a brain tumor until family members made an intervention and tests revealed the source of her various symptoms which taken individually caused no alarm for Amy.
‘Tis the season to be grateful. And Amy is grateful for much. What are you grateful for?
In the latest AARP magazine Michael J. Fox talks about how gratitude is a source for his continued optimism in spite of having to give up acting because of unreliable speech.
The UC-Berkeley Center for the Greater Good explores the concept of gratitude with evidence-based research. Check out articles and video clips here.
An earlier podcast episode, Gratitude & Thinking Small, includes an interview with noted author and Buddhist practitioner, Toni Bernhard.
Christina Leffmann, or Roma as she prefers to be called, is passionate about indoor and outdoor rock climbing as well as the Acquired Disability Peer Support Group she started. In June Roma traveled to Salt Lake City to participate in Paraclimbing National Championships (you can see Roma climbing at 12:30 in the video).
In her early 20s Roma experienced a series of strokes and identifies as having an acquired disability which is different than being born with a disability or aging into a disability. Currently she works for the Center for Independent Living and has an active life with a daily stretch routine, swimming, and weekly cycling. And rock climbing, of course.
Earlier this year Roma shared her movement practice at one of the weekly Zoom meetings as part of the May Movement Challenge.
Self-Care, or radical Self-Care, is the theme for the 5-year anniversary of the Glass Half Full podcast. This short episode features my brand of self-care — daily routines that are my sustenance, not just an end-of-the-week treat. Whether it’s nutrition, movement, or attitude my waking hours are spent minimizing symptoms associated with a progressive neuromuscular disease and maximizing a limited supply of energy.
As part of the anniversary celebration, join me in a streaming Facebook Live event on Sunday, March 21st at 11:30 a.m. Pacific. I’ll be joined in a lively discussion on Self-Care with previous podcast guests.
On Friday, March 26th at 11:00 a.m. you can participate in an interactive presentation, A Journey With Movement & Exercise at the Virtual Abilities Expo. Registration is free.
You can get your own mug, t-shirt, mask, etc. at the Glass Half Full storefront.
A contemplative practice includes meditation, prayer, mindfulness, yoga, tai chi or qigong, journaling or anything that helps ground you. Some people use affirmations while others use music to help them ease into a more tranquil state.
Shameka Andrews (pictured above) shares her meditation experience with individuals and organizations and even at a local farmer’s market in upstate New York. Positive affirmations and mirror work have helped Shameka move through feelings of depression and isolation associated with having a physical disability,
Gareth Walker talks about finding mindfulness meditation and how it’s helped him cope with Multiple Sclerosis.
Mary Holt, RN, went through a mindfulness meditation training that changed how she works with patients and families dealing with neurological conditions like muscular dystrophy and Parkinson’s disease.
Melissa Felsenstein used sound meditation to help her move through depression and anxiety. Here’s a sample of Melissa’s work.
Molly Lannon Kenny, a yoga therapist and graduate of a program in Christian mysticism, discusses similarities between prayer and meditation.
Author Toni Bernhard offers her Buddhist perspective on meditation and how it has helped her deal with a chronic illness.