It’s the May Movement Challenge! This podcast episode explains all you need to know about the #MayMovementChallenge2021 featuring Stanford University’s Research Physical Therapist, Tina Duong.
Tina’s worked with both children and adults with spinal cord injury, stroke rehab, and neuromuscular disease. She talks about stretching, diaphragmatic breathing, and how to take care of yourself when starting a movement practice. Learn about the FITT Principle (Frequency, Intensity, Type, and Time) as it applies to movement and exercise.
Once you’ve listened to this episode, don’t waste any time in registering for any of the five information sessions on Saturdays during the month of May. Take a look at the Events Calendar for May with over 75 classes — all free, online, and most with accessible accommodations.
Each Saturday in May will feature instructors leading a stretch, discussing a different aspect of movement as well as motivating us to select attainable movement goals.
Telling a patient story can be a highly emotional task for anyone. Thankfully, there are people who can help. Emily Newberry – author, speaker, coach – at the Kaiser Permanente in Oregon, is one of those people.
Emily was a natural story teller having spent part of her youth helping others tell their stories through song. Over the years she’s perfected the craft and simplified the process. It’s not rocket science, she says, just remember two facts and a feeling.
As part of Kaiser’s Person & Family Centered Care, high impact storytelling is important for patients as well as healthcare professionals. A patient story can create a call for action.
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.
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.
Do you see images of yourself reflected in popular media? As a person with a chronic health condition and/or disability, is your life reflected in movies, television, print, or social media?
In this themed podcast episode you’ll hear from Christophe Zajac-Denek — an actor, musician, surfer, skateboarder, and little person — whose podcast, I’m Kind of a Big Deal, explores the unique lives of people with dwarfism. Christophe has worked in Hollywood movies for 11 years but rarely do you see his face.
Lindsey Kizer, recently diagnosed with narcolepsy, appeared in an earlier podcast episode. Her experience of narcolepsy reflected in media has usually been a joke with the character falling asleep mid-sentence.
John Poehler is a published author and award-winning blogger in Colorado. Diagnosed with bipolar disorder in 1999, John’s memory of mainstream media’s representation of people with bipolar disorder was far from accurate.
Daniel G. Garza, an HIV/AIDS patient leader, advocate, and educator talks about the first movie where he saw characters portrayed with HIV/AIDS. Daniel has a blog/podcast and YouTube channel.
Ania Flatau, an avid dancer born with spina bifida, was featured in a previous podcast episode, Ania has never seen spina bifida represented in popular movies or television but she is quite proud of a certain wheelchair skater, Aaron Fotheringham.
For those with myotonic dystrophy, like myself, all we have is this documentary, Extremis.
Transcript
welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready welcome to the glass apple it’s our first episode for 2021 took a little break no vacation just working on social media the website search engine optimization oh so many things behind the scenes but we’re back this episode is all about how we’re represented in popular media on television in movies print and social media whether we have a chronic illness a disease and or disability are we seeing ourselves reflected in popular media i know i’m not i think i can safely say i’ve never seen a character with myotonic dystrophy on a tv show or in a movie well there is a documentary it’s called extremists extremists extremists and it’s about a palliative care doctor and one of her dying patients has myotonic dystrophy it was incredibly painful to watch and several years ago there was a tv medical drama called royal pains i didn’t watch this series but i saw facebook posts from people in my patient community that there was an episode that mentioned myotonic dystrophy so i mean sure i found that episode i uh i marched it only to be let down it mitotic dystrophy was mentioned as a possible diagnosis for a patient i don’t even think you saw the patient but it was quickly discounted so like you could sneeze and miss the whole thing so again to thinking about the power of medium representation over the last few months i’ve interviewed a few people people with different health conditions or disabilities to hear if they felt represented in popular media the first person you’ll hear from is Christophe Zajac-Denek that’s a hyphenated last name not just multi-syllabic i met kristoff at a virtual podcast conference he’s originally from detroit but because of his avid interest in surfing skateboarding and punk rock he made his way to southern california Christophe identifies as a little person and has a podcast called i’m really a big deal he shared with me that there are between 200 and 250 different types of dwarfism and people exhibit different symptoms depending on which type of dwarfism they have the condition that Christophe has is called cartilage hair hypoplasia in your lifetime how have you seen the media change in the representation of little people and when when did the term little people become i’m assuming it’s acceptable yeah like are people that you met in your community do any people resent that term or is it a term that came out of your community sure yeah those those are really important questions the tour i’ll start with the term little person the term little person is acceptable um you could also say dwarf however when i’ve posed this to guests on my show some of them have strong feelings
in us in a way that they don’t that doesn’t define them and so they don’t want to be called a little person or a dwarf they just want to be called by their name and just like we all do you know your condition does not define who you are so in that same breath that’s the same with us you know little person is it’s it’s fine it’s pc so is dwarf you know um [ _ ] or the m word as people refer to it as is not okay um you know but words are just words in a in a sense and if if somebody actually wants to come up and have a conversation with me and say you know if they were to call me a [ _ ] or something like that and i wanted to if i saw value in the in the conversation or you know where where this was somebody that was just maybe misdirected or something like that and even if they’re not you know it’s still okay to say hey that’s offensive and that’s not all right to call somebody out like that my name is Christophe in fact another guest on my show does that and he is incredibly brave um whether they call him out as an offensive term or not he will go up to people and say hey you know the proper terminology is this but also my name is joseph and it’s nice to meet you and i was born this way and he interacts with kids on this level and i i never would be i i’ve never been able to do that before you know maybe this past year or two because you know it’s still accepting yourself and all of my friends that i’ve shown that to as well they’re like that’s so cool i don’t know that i got the balls to do that just to you know go up to a mother and a child and to confront the situation and and because with each situation that passes if it’s not rectified or if there isn’t some sort of positive interaction or a teaching moment or something like that that’s a moment that’s lost and that’s another moment that goes by where it’s okay to maintain confusion about how to interact with us or other people with disability you know and to me the whole reason why we have that is because the media doesn’t include us you know i’ve worked a lot of show i’ve worked in hollywood for 11 years and you’ve seen my face once maybe twice you know and it’s not because i haven’t worked it’s because hollywood covers me up for everything you know my face is covered in prosthetics or makeup or just costumes and masks and crazy wardrobe and things like that and trust me i want to do that stuff because it’s fun and i can do that stuff and i need the work so please pay me but also you know you just complimented me on my face and i’m not searching for compliments but i’m not this disgustingly grotesque object that seen in a commercial or in and i’m not saying myself i’m saying all of us you know everyone everyone that meets my friends with dwarfism think that they’re incredible they’re like your friend is so cool how they’re so awesome i never you know knew another little person before them or you know before you or whatever and it’s the personality that shines through right and that becomes inaccessible when little people are hired as props or just warm bodies to move around a costume or some foam or something like that and so that’s how i see how society sees us you know and it’s taken me a long time to figure that out because remember how i said i would get paid you know 10 to 100 times as much you know in a costume as i would get playing music well there’s the there’s the hook right there right money but then once you start to think about it and you you’re thinking okay well i’m i’m not getting any equity on my face or my skill because i’m in a costume they could have hired anybody and there’s just a list and if whoever said the first yes is going to get the job so it doesn’t matter you know what i look like in that regard and i think that that’s sad and i i do think some stuff in hollywood is turning around for the better with that i mean peter dinklage is blazing a trail and he’s awesome and i’m i’m really proud of him and what he’s done and the station agent i love that you mentioned that film that film is is incredible that when i first saw that i was thinking who knew who knew about me this is crazy it’s actually i’ve identified with that so much and just more of that is what i think we need and you know even when there are certain things that in my eyes are exploitative i still see there’s a part of me that still sees value in you know like the little women of la and dallas in new york and stuff i mean it’s a reality show so there’s going to be ridiculous drama and things going on but still you get to see little people you know it’s it’s not i i don’t see that as steps backwards i see it as steps forward even though it’s it it’s this fantastic thing and it’s it’s reality tv and stuff like that i i respect that there’s a show that that shows us you know and and because you have to work on opening the door somehow and i think that you know what tara created is important and it’s good and it’s gotten attention of a lot of people the next person i spoke with is Lindsey Kizer in north carolina Lindsey appeared in an earlier podcast episode about coping with COVID she was diagnosed over a year ago with narcolepsy what do you think the biggest misconception people have about narcolepsy you know whether it’s friends or family members just in general i think you know most people think it is like what you see on tv you know where someone can be you know mid-sentence or you know doing whatever normal activities and they just in an instant fall asleep out of nowhere and that’s not how it happens at all you know i don’t really know where that has come from um because even that’s not even something recent as far as the past few years you know that’s been over time and it’s you know being diagnosed i really saw how people really believe that you know co-workers not really friends because they had kind of seen some of the progression up into up to my diagnosis but i’d even say acquaintances and even you know new co-workers and people that had met me after when i say have narcolepsy i get the question either what is that or wait so you’re just gonna fall asleep while you’re talking to me that question would make my would make me cringe so bad for so long how does popular media tv television books and you know i guess social media too how how do they portray narcolepsy i mean it for most people it’s a joke um you know one of the first movies that anyone ever mentions is always deuce bigelow um and he goes on the date with the girl and she just you know middle of dinner after he drops her off at the house you know she’s falling asleep out of nowhere and that really is the image for a lot of people that you know i’m gonna be talking to him or sitting at dinner and i’m just gonna fall asleep you know my face will be in my food um you know i’ll fall and hit my head something like that and a lot of them after they you know spend time with me you know they do realize that that’s not true or some of the ones that you know had that perception and had no idea i had narcolepsy you know that does change social media i do think is starting to do a really good job especially thanks to some of the organizations at trying to correct that narrative because there are a lot of people that are very outspoken about that not being the truth on social media and i do think that’s starting to but that’s definitely a big mountain to climb because it has been something that’s you know been drilled into people’s heads for many years thanks to movies tv shows and who knows where this idea came from well you know i i never saw deuce bigelow um but i did see rumblefish did you see that okay i have to interrupt for a moment now i’ve since realized it was not rumblefish i saw i mean i didn’t see that movie and it’s by the same director gus van zant but it’s his other movie my own private idaho from 1991 which features the actor river phoenix as a character with narcolepsy it’s older than deuce bigelow so maybe that’s why you haven’t seen it okay and and that was the first time i think it was river phoenix who was in it do you know who he is i have heard the name i could not think of that face off the hell in my head right now well he’s uh he’s since deceased but he is or was joaquin phoenix’s brother i guess his older brother and he was in a movie um gus Van Zant i think that’s the filmmaker and it was very it was kind of an art house movie so it’s very attractive to visuals but he river phoenix’s character did have narcolepsy and for me that was the uh first time i ever heard of the condition and i was probably in high school or college so it could be like 30 years old the movie so maybe but it was a drama and then so it wasn’t you know i it would be interesting for you to see it and then tell me what you uh what your take on the portrayal is because i i’m sure it was a bit more empathetic than a you know comedy like so many fallen you know their head in the soup or something i definitely will have to check it out because i have not seen it come up you know most of the tv and movie portrayals of it it is more of you know a comedy show or movie so that definitely would be interesting to see you know if it does have more of an accurate portrayal for sure back in october of 2019 oh so long ago when we traveled freely i went a trip to las vegas to attend the health conference i went from wego health it was a huge conference and it’s hard to imagine being in a crowd like that now but i got to meet other patient leaders from all over the country and one of those patient leaders is John Poehler john lives in fort collins colorado and he wrote a book which was published in 2020 it’s called this war within my mind based on the blog the bipolar battle i think it was right before christmas that i talked with john via zoom and we were both well bundled for the cold anyhow john really stood out for me at the conference he’s very warm and friendly so i have looked forward to including him in this podcast so you were diagnosed in 99 right right yeah so in the 21 years how have you experienced people’s reaction and understanding uh to bipolar condition you know when you when you talk to people has do you feel like people are more understanding now than when you first were diagnosed oh definitely definitely beyond the shadow of a doubt because when i was first diagnosed i know a lot of people when they are diagnosed they kind of they deny it at first they’re like oh my gosh why me i was actually really excited about it because i’d been searching for answers for a few years and so to finally have a doctor say john this is what you have and it matches up completely and not only do you have this but we can manage it it’s not like a death sentence or anything we can we just need to find the right treatment for you and so i shared it with a lot of my friends my family and so forth but i found out real quick that especially back then there was a huge stigma i lost a ton of friends um and i just i had a lot of bad experiences with broken friendships relationships because of my illness and actually i haven’t really been open about it until the past i started my blog at the beginning of 2017 and that’s when i just decided i’m gonna tell everybody you know i don’t it doesn’t matter to me anymore and i actually have a good response and that’s why you know when we met last year in las vegas you know getting that award on twitter that was really showed me wow people are starting to understand more and you know there wasn’t a wego health back when i was diagnosed there weren’t any of these huge organizations that you see now and so it’s it’s definitely a lot less i feel a lot less stigma compared to the way it was back then you know i don’t necessarily think like in you know mainstream media i don’t feel like it’s portrayed as accurately as it could but i mean it’s better than it was back then how has the media in popular media whether television books movies uh celebrities you know coming out how how has it changed over the years from my perspective just from what i’ve you know i’ve experienced when i was first diagnosed i tried to watch a bunch of the movies that you know portrayed characters that had bipolar disorder and i couldn’t relate to any of them at all it just seemed like they were more stereotypes of what someone with bipolar disorder lives with and the past few years i’ve seen a bunch of new movies come out and they’re getting closer but in terms of portraying portraying us as a character on tv i haven’t really been too excited with what i’ve seen there’s one movie i’ve seen that the director he has bipolar disorder and he acts in it and it’s an independent film and i saw it last year i previewed it and that’s probably the closest that i could relate to because it was from his story it was based on his life and i totally could relate to that so it’s come a long ways that’s for sure in terms of like actors actresses um people on the you know that you hear who are some examples of kanye west yeah yeah that’s i’m yeah that you know yeah that’s kanye west i know he i know he has bipolar disorder and it’s you know i i feel bad for him because you know i could you can see that he’s suffering and we have i have no idea obviously we don’t have any idea about personally what’s going on with him but seeing his outbursts and stuff i mean i can relate to some of how he’s acted so in terms of the reality of what like untreated bipolar disorder looks like i think that you know that he’s an example of that um but there’s others too there’s a there’s a gentleman on a general hospital in maurice something i’ve man i wish i don’t remember the name names too well but he’s a i i’ve i’ve heard him speak and i’ve read articles in bipolar the bp hope and he is great like he speaks out and i really like what he does so the the actor is on the as bipolar but not yeah yeah oh okay yeah he actually has and i think they put it in the script i’m not sure but in terms of him and talking about it it’s for me it’s it’s awesome to see someone in a light like that that has you know so many followers so many people that he’s in the spotlight and he feels so comfortable just talking about mental health bipolar disorder that’s i think that’s a lot different than way back when but then of course you know we can’t leave out carrie fisher i mean she was uh she’s been you know spokesman spokeswoman since the very beginning so and she’s been always just so cool so yeah no i always forget that uh she did come out at some for me i think the most you know just as terms in terms of a character the main one i think about is from homeland claire danes yeah you know you know how different communities i’m i’m jewish and you know when something comes out in the media and people always go is it good for the jews is it bad for the jews so i always think that different sort of minority communities do that you know so was that portrayal how did people in the bipolar community was there talk about her character and there was actually i think she actually uh spoke with uh influencer at some somebody who has bipolar disorder and kind of got she she was consulted by her and uh supposedly she used that to for character or whatnot but a lot of people that i spoke with thought that they did they didn’t portray it as well in the actual script you know as her as a character as an actress i i think she does an awesome job with it you know but she’s not the one writing the script you know and i don’t i think some of the storyline it just doesn’t really drive and make sense with some things like uh she was she stopped her medication and then she got psychotic and manic and like she took her meds again and she was fine like the next day and that’s completely you know i mean you know it’s like these meds don’t just kick in like that and it’s like oh a day later i feel 100 you know so you know just things like that so but i think it’s good that they you know the consensus from everybody i’ve talked to is the same it’s you know it’s nice seeing characters in actual the you know on screen that they’re trying to portray bipolar disorder which is you know really good i haven’t met Daniel G. Garza in person but i’ve seen him virtually many times daniel has been a long time patient leader advocate and educator for hiv aids he has a very impressive resume he’s a board of director for a health center an ambassador for a number of non-profit organizations winner of the hero of hope award for patient advocacy from ipain international foundation as well as having a number of media outlets his own podcast youtube facebook live daniel has a lot going on so this is just an excerpt from our recent zoom conversation you’ll hear more from daniel in a future podcast episode he represents two patient communities those with hiv aids and anal cancer what are your feelings about how popular media has represented you know hiv aids people with hiv aids and or people with cancer and in particular you know anal cancer i think let’s let’s say aids i think aids for a long time aids was just death people just died and one of the very first movies that i ever saw about aids was a movie called it’s my party with um eric roberts uh gregory hunt griffin heinz i think it’s rare anyway he was on on gonzo anyway uh Margaret Cho in it uh uh john is in it there’s a lot of great actors in the movie and it was about how men of that time who were positive and were dying would commit suicide and right so that their families could collect the insurance com money but they would make it seem such a natural debt so that the families would like the insurance and that was one of the first movies um interesting enough my mom and i got to see that movie together when i was really sick in spanish so after i was diagnosed her and i was it was on tv in south texas in spanish and she watched it with me and that changed her view on hiv i think media also print if you open a magazine and you see a medication for hiv and aids they always pick the most beautiful buff guys and they’re out hiking looking at the sunset and it’s so pretty but it’s not always like that medications doesn’t always no um i i think we could do a lot better i think we could do a lot more i think that we need more latino we need more spanish information out there medication doesn’t medication is good for your body but it doesn’t always make you feel great and i hope people can understand that difference like it’s good for me i know my medications are good for me i know they’ve made me strong i have a strong immune system my t-cell count is undetectable i have great hair like everything’s good but it doesn’t always make you feel great there are complications even after all these years of medication there are days when you know diarrhea happens or constipations happen or your mood swings and and i think we need to talk to people about that i i think we lost a little bit of the fear that we had for HIV um back and and people got very like oh there’s a pill like i can no yes yes there is a pill but this is not a club that i want you to join just because it’s not that bad um it it is that bad it is it it affects your mood it affects your relationships um for some people it affects your your vision of your future there are still people in 2020 that i know of who have not told their families that they’re HIV positive there are people who hide their medications in aspirin bottles so that their family doesn’t know that they have HIV so no it’s it’s yes we’ve moved a lot forward in treatment and in services but we we haven’t let people catch up yet and i think that’s where we need that in media we need that representation out there um cancer man um i think anal cancer
is the butt of the joke and all this i think we don’t talk about it like we we should and i and i’m also guilty but i should i as a um anal cancer survivor i should be more aware of what i talk about and how i talk about it and what i say out there um and i don’t do it mainly because HIV has always been my main focus but it’s connected and i should be more of that and i think and please anybody watching or listening this is not bulletin belittling any other cancers but i think breast cancer has always been up front breast cancer has always been like the main cause that a lot of people go to when they when you hear cancer i think a lot of people go to breast cancer and then everything else falls behind nobody intended uh but i started a facebook page for us to me men with ostomy bags and
there’s there’s lack of communication in the group i i don’t i haven’t figured out how to get people or gentlemen to talk about it it’s very difficult to get the conversations going because um cancer affects a whole lot it doesn’t just affect your body it’s body mind and soul cancer as a gay man has affected my relationship with my partner not just emotional but physical intimacy not on his end it’s all me because i i put barriers and i set up walls uh because i haven’t had a chance to sit down with other to be very specific to with other gay anal cancer survivors and go how does this affect you with your relationship how does it affect you sexually uh how do you see your body now my last guest for this episode is Ania Flatau who you may remember from the last podcast episode about dance Ania lives in southern california is an avid dancer and was born with spina bifida have you seen you know growing up or now as an adult any images of people with spina bifida they you know had an impact on you positive or negative oof um you know not really like i mentioned like in the the spinal in spinal disability spinal cord injury world i’m growing up i saw a lot of images and and like there’s even a show on tv called push girls oh yeah like all of the representation i saw growing up was people with um spinal cord injuries and um you know i grew up thinking that it was because people like people who are in the mainstream society kind of look at spinal cord injuries as like for lack of a better term sexier than spina bifida so like their stories like they they relate more to the stories of people who’ve gone through trauma than they do you know somebody who’s going to talk to you about like a neural tube defect you know and i was born with blah blah blah blah that’s how i grow up grew up thinking and um i never really saw a lot of images of like influencers with spina bifida and that’s why i feel like it’s so important for like when people with spina bifida have like their conferences and their get-togethers for people with spina bifida that they realize that like even if you’re like not an influencer and you’re not famous because you lived your life with spina bifida and you you work and you you you live your life and and do it to the best of your ability you are an influencer you don’t have to be on tv to be an influencer as long as you’re living a life and and doing something that someone behind behind the lens is looking at and going like i want to do that you are an influencer and you are making an impact um in somebody’s life i’ll give you a quick story so when i graduated from college right um i brought my friend with me who has cerebral palsy and he was struggling with the thought like do i go to school do i not go to school just the fact that he saw me graduate and that i had my diploma in my hand was enough for him to go i’m going i’m going to college like this is what i’m going gonna do and that’s what i mean like you never know who’s looking and you never know who’s like watching every step that you make and is drawing inspiration from what you do yeah i think that like you really don’t have to have that i’m famous label to be of influence every single one of us has that ability that’s my answer to that question um i think that like even though we’re not on tv it’s okay because there will be somebody in your immediate community that is going to make you go that is freaking cool i want to do that you know like you know like well okay i lied there is aaron fathering him aaron fatheringham has spina bifida and you know he’s competed in nitro circus and he’s definitely made a name for himself so he definitely is i haven’t heard of him what does he do no he doesn’t he’s a i mean i’ll google it but yeah he does um it’s i can’t remember the specific name for it but basically it’s like wheelchair skateboarding so if you if you look up nitro circus it’s this massive um like extreme sports um i don’t even know like competition like they have biking and and skateboarding and like they do all these massive tricks and he’s one of those people that like like he was the first person in a wheelchair to do a backflip on a massive like really massive skate skate ramp wow so yeah he is definitely one of those one of those people who is like you know he’s made a name for himself and and you know you throw his name out there and you have spina bifida like 90 90 of us are gonna know who he is um yeah that guy’s crazy but um i mean i would never do it but i definitely see him and i go okay he’s he’s living his best life so why can’t i you know what i mean like whatever that whatever that definition is for you just live your best life is like i think that that’s the point of being an influencer is like seeing somebody killing it and you being like i can do that too you know well i think i can say that none of us seem to be thrilled with how we’re represented in popular media about a week ago i was on a community we go health zoom call and a woman on the autism spectrum urged all of us on the call to boycott a movie i wasn’t familiar with this so i googled it and the movie is called music and sia the musical performer is the director apparently many in the autism community find the yet to be released film offensive it includes spirit stereotypes and they’re upset that the character is played by an actress who is neurotypical of course i can’t comment on any of this since i know few facts but i invite any filmmaker or writer to include a character with my atonic dystrophy in their next creative work and i won’t mind you know if elizabeth moss amanda pete or kate planned [ __ ] play her or me
thank you for listening to glass half full leslie invites you to leave a rating and review on iTunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot online class half full dot online
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.
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.
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.
If Emma Goldman were alive and experimenting with the virtual life, she may have said something like this. Why not dance through the pandemic? It’s good physical exercise, ignites oxytocin, and can bond you with a community.
Yagmur Halezeroglu and Tess Hanson from Dance for All Bodies (above) and Ania Flatau from Wheelchair Dancers Organization
Several accessible dance organizations have brought their talents online and thus expanded their reach nationally and internationally. One organization, Dance for All Bodies, co-founded by two recent UC-Berkeley grads — Yagmur Halezeroglu and Tess Hanson — feature a variety of professional dance instructors teaching accessible dance in a variety of styles from salsa to urban jazz and even chair tap.
Another group, Wheelchair Dancers Organization, pairs wheelers with walkers, and offers online classes in Island Fusion, Hip Hop, Latin Jazz, and Bollywood. One of their wheeler instructors, Ania Flatau, also offers dance classes on YouTube Live through her Facebook group, Cat Daddy’s n Krew Virtual Fitness with Ania.
Loose Transcription
Hello…in this podcast episode I’m sharing more of my pandemic experience with you. A couple of months ago I interviewed two people affiliated with BORP – Bay Area Outreach for Recreational Programs. BORP is an amazing organization that has really stepped it up during this bleak 2020 by providing online classes.
But BORP is not the only group helping us cope physically and emotionally. Today you’ll learn about two other nonprofit organizations — Dance for all Bodies and the Wheelchair Dancers Organization.
My first guests are Yagmur Halezeroglu and Tess Hanson. They are the co-founders and directors of Dance for All Bodies which you’ll hear them speak about as the acronym – D FAB.
I found out about this online dance program through dance friends I met at Rumba with Tina which I attend on Saturday mornings. D FAB is relatively new and features a variety of professional dance instructors teaching accessible dance in a variety of styles – salsa, Flamenco, Brazilian, Hip Hop, Contemporary Ballet, Urban Jazz, Diaspora, and Chair Tap.
It’s fun, it’s educational, and it’s a good work out.
I asked Yagmur and Tess how they met.
Tess
“…we went to UC Berkeley” – applied for same job – Cal Performances. Ushers, assistant managers. Met fall semester. Yagmur had a lime green backpack. Realized we both loved dance.
Yagmur
DfAB started a one-time dance class I organized at hospital. Amputee community. Amputee support groups. There is a gap the way we view dance. Taking action and making change support what you believe in. Tess and I put this idea together. Big Ideas competition. How can we scale this class? Worked with AXIS dance company in Oakland. I ask about her work with the blind. Tess talks about the beginning. One of her brothers is autistic; James is a part of my life.
Now that both Yagmur and Tess have graduated, I was curious to know how they envision the future of D FAB.
Yagmur
We’ll just take It wherever it goes. Tess naively thought we’d need a year to get it sorted out. So many ups and downs. It feels like a good, worthy work in progress. They met at BORP at Ed Roberts. Once the pandemic hit, our lives just changed. Let’s try online…how did you find dance instructors? Judith Smith helped find instructors. Stephanie, Janpi – through word of mouth. Dancers with disabilities. We want to connect these dancers with experience choreographing.
Yagmur
Looking for partners and sponsorships. Challenges we’re facing. Initial award. Crowdfunding campaign in late March. We don’t have a source of revenue beyond donations. We want to compensate the team. Bring our classes to new audiences. Spread beyond our little bubble. Partner with a hospital. adaptive dance in schools.
I asked Yagmur and Tess how they feel about the past year and all of their accomplishments.
Tess
Tess talks about how people feel after the class; we get lovely messages that provide the fire to keep going. Can I do this? I’m really proud of the partnership with Wheels of the world – an accessible travel organization. We had a lot of classes in rapid succession.
As you can tell these young women are quite inspiring. I had just assumed they were both dance majors but they weren’t. Yagmur studied cognitive science and hopes to pursue medical school and Tess studied environmental health and policy and is currently doing field work for a water conservation group.
You can learn more about their organization by checking the links on the Glass Half Full website.
My next guest is Ania Flatau. I met Ania earlier this year because she was one of the instructors in an Island Fusion dance class I took offered through the Wheelchair Dancers Organization – or WDO. WDO was founded in 2008 in San Diego, California by Beverly Weurding – a woman who has Limb Girdle Muscular Dystrophy. Ania’s been attending WDO classes for the last four years.
I first asked Ania about the organization.
Ania
The classes are for disabilities…we call them rollers and walkers as partners. All the classes are for all abilities, all levels. Teachers who roll, teachers who walk.
Ania
Tell me about your love of dance; what were you drawn to? My parents are from Poland. When I was in high school. I was an athlete. I thought I was a bad ass. I felt so uncomfortable; he was pulling my arm. At the end I was so uncomfortable that I wanted to figure out how to do it right. One summer I took a trip to Poland and my parents found a dance camp for wheelchair ballroom. These dancers…dancing for six hours/day; they were training for the world championship. They kicked my butt. I remember feeling challenged…that’s where my love for wheelchair ballroom started. I started to feel more and more comfortable with my body. I felt a oneness that I had never felt before. I was…a senior in high school. I got into those fields because of the wheelchair dance.
Ania
Ever since that dance camp I’ve been doing something dance related. It makes me feel like I am centered in a world. Being a person with a disability…disconnected from your body. I feel present and centered.
Ania
I teach a dance fitness program world of dance u jam. We partnered with world of dance – a massive network. The songs are urban, like hip hop. When covid hit I…how am I going to get my fitness on? I was toying with the idea of teaching virtually. I created a Facebook group. the name is cat daddy’s and krew virtual fitness with Ania. A hip hop dance move called a cat daddy looks like you’re rolling a wheelchair. I was trying to find a creative way to honor the culture where hip hop came from and have an ode to the dance…cat daddies are wheelchair users and krew is everyone else.
So there you go…I learned something about hip hop. You can find out more about Ania’s Cat Daddy and Krew on Facebook; I’ve got a link to her group in the podcast notes and her YouTube Live classes are free. Ania told me she likes the accessibility features like the captioning that are available on YouTube. If you have any questions about modifications for the dance moves, she’s more than welcome to meet with you – virtually – to suggest options.
I hope you’ve enjoyed this episode but more important, I hope you check out the dance classes available at Dance for All Bodies, Wheelchair Dancer’s Organization, and Ania’s World of Dance U Jam.
Loneliness is a public health issue. It was before the COVID-19 epidemic forced us into social isolation. Former U.S. Surgeon General Vivek Murthy called loneliness a “growing health epidemic,” and even wrote a book about it – Together: Why Social Connection Holds the Key to Better Health, Higher Performance, and Greater Happiness.
In the United Kingdom they take this issue very seriously and now have a Minister of Loneliness. Sophie Andrews started an organization called The Silver Line which is a helpline for lonely and isolated seniors.
Does loneliness impact those with chronic illness and/or disability more than the general population? Curious to know how you rate on the Loneliness Scale or maybe you’d like to take a quick quiz for a less robust assessment.
In this podcast episode we explore that question as well as the antidotes for loneliness. In this presentation for the University of Utah’s Program for Inherited Neuromuscular Disorders, I discuss how I’ve handled social isolation during the pandemic.
My friend, David, talks about the Big & Mini online program he’s become involved with as well as Quarantine Chat.
Although geared toward an older audience, Humana has a toolkit full of ideas on how to combat loneliness.
Loose Transcript
This podcast episode is about Loneliness. My interest in this topic was sparked a year ago when I heard a British woman – Sophie Andrews – speak at an event I attended. She had already done a TED Talk two years earlier. Her story is a captivating one, which I won’t go into now; you can check out her 15-miin video online. But due to her early life experiences, she learned how a listening ear can change someone’s life direction. She founded an organization called The Silver Line which is a helpline for lonely and isolated seniors.
In Sophie’s talk – as well as in subsequent articles and books that have been written – we learn how loneliness is of epidemic proportion. Research studies have found that loneliness and social isolation is often correlated to high mortality rates and deterioration of both physical and mental health. In the UK the concern about this public health issue has launched a new government position – the Minister of Loneliness. Seriously. In 2018, Tracey Crouch became the world’s first person to assume this role.
The former U.S. Surgeon General, Vivek Murthy, called loneliness a “growing health epidemic,” and this past April his book, Together: Why Social Connection Holds the Key to Better Health, Higher Performance, and Greater Happiness, was published. I have the book, started reading it but unfortunately I’m far from finishing it.
But, earlier this year, I was taking my first-ever class in public health – at a community college in downtown Berkeley — and decided my final project for the class would focus on loneliness in the chronic illness and/or disability community. I was curious to find out if this was similar to what is explored with older people as well compared to the general population. Is Loneliness more common in our community regardless of age?
On March 1st of this year, I posted a poll in the Glass Half Full Facebook group with 6 responses to the question, “Do you experience a sense of Loneliness?” It’s a small sample but the response, “Yes, I often feel lonely even though I have friends and family” received the most votes followed by “My loneliness is a symptom of being homebound with limited exposure to people outside of my family.” Personally, I don’t know most of the respondents though two of them I do know. They’re both caregivers. And they’re lonely.
And just as I was starting my research, I stopped going to the class due to the pandemic. How ironic to be taking a public health class that is pre-empted by a pandemic that creates an even more powerful experience of loneliness and isolation.
I did have time to gather a few academic research articles relevant to the topic but it is certainly not an exhaustive body of literature. I have no definitive answer to the question – is loneliness greater for those with chronic illness and/or disability? I mean, right now…so many of us have dramatically changed our social networks. Hopefully, many of us have found some solace online; I mean the Zoom stock has skyrocketed. I use Zoom almost daily. But, I digress.
The five research articles I found are from different journals – Cognition and Emotion, Caring Sciences, Social Psychiatry, Social Behavior and Personality, and Community and Applied Social Psychology. Three are European studies – Dutch, Danish, and Norwegian — and one Canadian and one from the U.S.
Most of these article reference Robert Weiss who in 1973 conceptualized loneliness as perceived social isolation and described it as a gnawing, chronic disease without redeeming features. He identified six social human needs that if not satisfactorily met lead to feelings of loneliness. The needs are Attachment, Social Integration, Nurturance, Reassurance of worth, Sense of reliable alliance, and guidance in stressful situations.
So if you start with Weiss and his theory on loneliness from 1973 you can find 47 years’ worth of discussion. But, I didn’t dig deeper and I assume you won’t either.
So…isn’t loneliness normal at different times in our lives? Like, depression is something many of us have experienced from time to time. I’ve gone through brief periods of depression linked to an unfortunate experience but I’m not clinically depressed. I’ve also experienced a sense of loneliness at different times. Although I had many friends throughout grade school, I really didn’t feel heard or understood until my first year of college when I embarked on my first true romantic relationship. That’s a powerful feeling and unfortunately, more rare than I’d care to admit.
Robert Weiss, in fact, does make a distinction between social loneliness and emotional loneliness. Perhaps right now, during the pandemic, many people feel more of a sense of social isolation but still maintain a sense of emotional contact through the phone, internet, or at a six foot distance.
I can remember being at parties, surrounded by friends and acquaintances, and feeling alone. Just not in the groove of connecting with others. And I’ve been in situations where I was surrounded by dogs – at someone’s home when a party was taking place – and finding solace and connectedness with the dogs, rather than the people. Okay, that was a slightly drug-enhanced experience. But, the point is…being alone and lonely are not synonymous. And feeling lonely can be temporary or in some cases, the norm.
Let me get back to these articles I read. Only two of the five were specifically related to people with chronic illness and/or disability. In the Danish study they wanted to find out who were high risk groups for loneliness. They used a self-report survey with over 33,000 Danish citizens and found these factors were associated with a higher risk of severe loneliness – being a member of an ethnic minority group, receiving disability benefits or unemployment, living alone, having a prolonged mental disorder or psychiatric treatment. Severe loneliness was reported for just under 5% of those responding to the survey. Another 16+ % of the group were classified as moderately lonely.
One article teases out the distinction between solitude and loneliness whereas solitude expresses the glory of being alone. This article also briefly examines social isolation among the non-human animal kingdom and cites studies where fruit fly’s lifespan was shortened, obesity and type 2 diabetes developed in mice, the immune system of pigs was impacted, and other negative physical responses in a number of animals – all due to social isolation. The Canadian study compared a group of 274 adults with physical disabilities (MS, osteoporosis, Parkinson’s disease, arthritis, and “other”) with a group of 319 healthy adults without chronic illness. Each participant responded to the Loneliness Questionnaire and sure enough there was a statistically significant difference for people with chronic illness. They had a greater experience of loneliness as compared to the general population.
So…what’s the antidote? What can we do about it?
Before I skip to the brighter side of this theme, are you wondering how lonely you are? I mean, how do you compare the experience of loneliness? We all have different expectations from our varied social networks. And I’m not talking about the movie with Jesse Eisenberg portraying Mark Zukerberg. A social network, or support network, or social circle, essentially refers to humans in your orbit. A network of social interactions and personal relationships. This may include family, work colleagues, friends, or even the barista at the coffee shop you frequented every day…before the pandemic.
I tend to think of my social network as the people in all of my disparate little communities – my life partner, my neighbors whom I tend to see more frequently than most friends now, all of my Zoom buddies from dance and exercise classes, book club, support group, happy hour with my high school graduating class…
I strongly believe that my ever-expanding panoply of small groups helps me combat loneliness, helps me be resilient. Sometimes I don’t feel these connections as deeply intimate; I mean, how close can you be to many people? I’m not saying quantity wins out over quality…but…over time I have re-adjusted my expectations.
But let me get back to the antidote. I hope to shed light on all types of resources and inspirations for you to mitigate some of the loneliness you may experience.
So, how lonely are you? right…that was a question I posed. Considered the Gold Standard, the UCLA Loneliness Scale is a 20-item scale designed to measure one’s subjective feelings of loneliness as well as feelings of social isolation. I’ve provided a link to this in the podcast notes at the Glass Half Full website. There’s also a shorter, and less robust, quiz available at the website. I scored 19 which puts me at average for feelings of loneliness.
But how you score isn’t really important. It’s how you feel.
Last week I received a sample issue of O in the mail with my AARP magazine. O is Oprah Winfrey’s magazine. I was flipping through the magazine and saw an advertisement for a special O supplement called The Power of Connection: Your Guide to overcoming loneliness, building community, and finding joy in every day. Now, I’m not suggesting you go out and buy this. It’s pricey; I got it on Amazon. And I certainly don’t profit from this announcement…no free cars for me. But, it’s pretty good. Far easier to digest than the research journal articles I read and most of the short articles reflect solid research. And there’s stuff in there – antidotes for loneliness — that I’ve talked about – book clubs, exercise classes, support groups. Hell! Maybe Oprah’s been listening to the Glass Half Full?
The antidote is Connection. We are social animals. We need each other. Sure, there are introverts and extroverts. But…whatever dosage you require, we still need each other. And pets are great. We’ve got five cats. I love them. But, I still need to connect with other humans. To laugh. To converse. To listen to and be listened to. Even to argue with.
Sometime last year I listened to a podcast interview with Vivek Murthy, the former U.S. surgeon general I mentioned earlier. I believe he said, “Loneliness is a subjective discrepancy between our actual level of social connection and our desired level of connection.” We’re all different in terms of how much connectivity we require. He spoke of a few antidotes but stressed one solution is serving other people. It shifts the focus away from you and reaffirms that you have value to offer.
In October I spoke at an online conference for the University of Utah’s Program for Inherited Neuromuscular Disorders. The title of my presentation was Making Connections. I spoke about my early experiences of forming social networks and what I’ve been able to cultivate during the pandemic. I invite you to check it out; perhaps it will spark some ideas for you?
One of my friends, David, has found unique ways to connect with others during this period. David lives alone. According to the U.S. Census Bureau survey in 2018, 28% of households in the U.S. are occupied by only one person, and this number is increasing. David doesn’t have a chronic illness or disability but, as I said, he lives alone and is a young older person. In one of the research articles I read for this topic the researchers assigned names for different age groups; apparently I’m middle-aged, at least for two more years. And David, who is ten years older than me, is a young, older person.
Anyhow, we had a conversation about two things he’s discovered during the pandemic – Quarantine Chat and Big and Mini.
If you check the Glass Half Full website there’s a link to a video about the Big & Mini program featured on the Today morning show where David makes a cameo appearance.
Another antidote for loneliness that I gleaned from an article in a magazine is to focus on increasing your circle of concerns as opposed to your circle of friends. It helps shift your focus to a collective connectedness where you can feel a part of something bigger than yourself.
Are you ready for three days of workshops, adaptive activities, and discovering resources and services to enhance your quality of life?
Peruse the agenda, make plans for November 20-22, and register for the free Virtual Abilities Expo.
President and CEO David Korse shares the 40+ year history of the annual event in this podcast episode as well as whets our appetite with the impressive lineup of Expo activities.
There’s something for everyone — whether your interest is in disability rights, adaptive movement, or how to make your home more accessible.
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