When to stop driving a moving vehicle? That is the question to ponder; is it a toss up between being a responsible adult or maintaining a sense of independence? For many people, this is a difficult choice. If you live in an urban or suburban location you may have many options available if you give up driving. For others, a car may be a necessity — one needed to get to gainful employment, purchase groceries, or use to transport family members more disabled than yourself.
Podcast Host Preparing to Be Responsible and Less Independent
In this academic paper, physicians discuss health conditions that predispose patients for difficulties with tasks required for driving a car safely. People with Alzheimer dementia, epilepsy, visual impairments, sleep apnea syndrome, cardiac dysrhythmias, substance dependency, and neurological disorders with a cognitive component are at risk.
In this MDA Engage recorded webinar, the presenter shares this factoid — For every mile driven there are 20 decisions that need to be made and less than ½ second to react.
This podcast episode explores the decision-making process for podcast host, Leslie Krongold, as well as for guest, Keisha Greaves. Both chose to give up driving before a doctor told them to.
If you, or a loved one, are concerned about your current driving skills, take this online assessment to gauge whether or not you should explore driving options.
Each U.S. state has unique laws regarding senior and/or drivers with specific disabilities; check what your state has on the books.
If you’re a caregiver in search of advice for your loved one, check out this U.S. Dept of Transportation website.
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.”
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:
“Just get on with it.”
“It could be worse.”
“It is what it is.”
“Don’t worry, be happy!”
“Positive vibes only!”
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:
“I see you, and I’m here for you.”
“Describe what you’re feeling, I’m listening.”
“This is really hard, I’m thinking of you.”
“Failure is a part of growth and success.”
“I see that you’re stressed, is there anything I can do?”
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.
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.
What do you do as a patient with a progressive health condition that renders you unable to do certain tasks? Do you ask for assistance or find a work-around to accommodate for that situation? Once you ask for help, how does your relationship with your helper change?
Learned Helplessness is, according to Wikipedia, “a condition in which a person suffers from a sense of powerlessness, arising from a traumatic event or persistent failure to succeed. It is thought to be one of the underlying causes of depression.”
Psychologist Martin Seligman coined the term, learned helplessness, in early research he did with animals, and eventually humans. This New Yorker article, “Trying to Cure Depression, but Inspiring Torture,” briefly describes different applications of the research.
In this podcast episode, Mike Hamlin, a man with myotonic dystrophy, sets the tone with a friendly rant. Melissa Dixon, Ph.D., a researcher and professor (Psychiatry and Behavioral Health and Pediatric Neurology) at the University of Utah, discusses learned helplessness with children and adults and how it impacts relationships and suggests empathetic communication styles.
A family physician talks about ways to avoid the flu, and enhance your immunity, during this peak season for influenza. Plus, you might learn some flu factoids for your next flu trivia contest.
Stay on top of flu statistics by following the weekly FluView on the Centers for Disease Control and Prevention (CDC) website.
If you provide care for someone with a chronic health condition or an elderly family member, you might want to glean additional flu information from this online article.
For the Attitude of Gratitude Give-Aways through December 19th, check the Facebook group for details.
End-of-life planning is a huge topic. In previous podcast episodes we’ve covered the donation of body tissue for scientific research and attending a life transitions retreat. With three fascinating guests you’ll learn about an annual symposium which brings together healthcare professionals, patients, caregivers and others all “committed to generating human-centered, interdisciplinary innovation for the end of life experience,” a yoga therapist who trains others to care for the dying with bedside yoga, and a death doula.
Bedside Yoga TrainingMolly works with yogiMolly at bedside
Dr. Shoshana Ungerleider, founder of End Well, speaks about her motivation and the need for the annual event. Molly Lannon Kenny shares how a Life After Loss program evolved into Bedside Yoga. Sarah Miller talks about becoming an end-of-life doula and her work at AARP.
For more information about the death wellness movement, check out my article on Spirituality & Health magazine’s website.
What is prayer and how do we do it? How does prayer differ from meditation? How can prayer impact healing? These are a few of the questions addressed by three podcast guests. The Jewish perspective of prayer from a rabbi who has faced cancer and chronic pain. The Christian perspective of prayer from a Baptist pastor whose late wife battled autoimmune disease and young son is in remission from cancer. And the perspective of a yoga therapist who has studied Christian mysticism.
To learn more about the Unity World Day of Prayer (September 12), visit their website.
An earlier podcast episode is with Dr. Lamar Hardwick – The Autism Pastor.
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 you ready welcome to the glass half full podcast if this is your first time listening i hope you’ll check out some of the episodes from the past three and a half years this is our 75th episode if something you hear resonates for you then it’s quite possible that many of the previous episodes have something to offer you as well i’ve wanted to tackle this topic of prayer for a while in fact we certainly have talked about the power of faith and prayer in other episodes a couple of years ago i spoke with the autism pastor dr lamar hardwick in georgia and in one of our caregiver themed episodes we spoke about faith but we’ve never focused specifically on the power of prayer i chose now because thursday september 12th next week is designated as the unity world day of prayer this happens every year but i was able to plan ahead this time so on september 12th for 24 hours there are activities you can engage in either virtually on the internet or perhaps in your local community you’ll have to check out the links i’ve included on the glass apple website to learn more so for this episode i spoke with three people about prayer i’m often curious about the differences between prayer and meditation two of my guests address this the first guest is molly lennon kenny who is a yoga therapist teacher writer you’ll learn more about molly in a later interview i was reading her book to prepare for my interview with her about bedside yoga something she’s been doing for nearly 20 years and i realized during the interview that she’d be the perfect person to reflect on the similarities between prayer and meditation
the second person i interviewed is an old friend from college new york university rabbi ramen letter nafshi i can’t recall what robin was studying in college but she went to law school soon after her undergraduate time and for years robin worked for nolo press writing self-help legal books here in san francisco she was active in a local synagogue and was a big help to me when i made my documentary film on women rabbis but at that time she wasn’t a rabbi and i don’t even know if it was something she was considering the last guest i have is a man i met recently at a podcast conference i attended in orlando florida we were at a speed networking event for podcasters it was insane and very loud in the hotel ballroom but jay holland stood out he didn’t introduce himself at the time as a pastor but he made great eye contact and shared with me how his son had battled cancer so i’d like you to sit back and relax and i promise you a very thoughtful and heartfelt show it’s a little longer than many of the previous podcast episodes but it’s worth it before you meet molly let me tell you that i did meet her in person several years ago i attended the northwest yoga conference in seattle and she taught one of the extended sessions i i can’t tell you the name of the session but i remember really liking her so i bought her book skip ahead for so years and i noticed a post she wrote in an accessible yoga facebook group i’m in this is in the last couple of months i saw this she was promoting a bedside yoga program that she was teaching and that piqued my interest and i got in touch with her so this fall you’ll learn more about her work in her conversation she told me how she had just graduated from the living school for action and contemplation which explores the heritage of faith from the christian mystical tradition and i know this sounds unusual but it will make sense once you hear the interview but molly’s sister had recently passed away before she attended this program living school for action and contemplation
if we’re coming from the yoga side we understand this is completely different and i would also say a lot of where my work is moving into especially after having finished this two-year program with father richard rohr is i think a lot of times in the yoga world we are like we’ve sort of run away from and kind of eschewed anything that smacks of abrahamic religiosity or like the judeo-christian religions that most of us grew up in so we’re kind of we kind of steer clear of those so i think from that side when we when we think about meditation we think of meditation and prayer as being something totally different and in many ways prayer is something that we wouldn’t do or we wouldn’t facilitate from the yoga side i actually don’t think that’s true or correct um and i think that also in different traditions so for example in christian mysticism what they might call prayer in many ways like centering prayer for example is uh one of the primary practices of christian mysticism centering prayer is essentially meditation open meditation right but they just use different they use a different term for it so i think it really i think it’s a lot about defining what those terms mean i think also a lot of us who grew up with prayer we still tend to think of petitionary prayer like you know please god like make my mom get better or let this tumor go away or you know whatever it might be those kinds of prayer whereas mystic prayer is more um i would say it ends up being more on the listening side of really sort of listening to the still small listening for the still small voice of god um or when i was just when i was just at my i just graduated my program last week and so i was up in albuquerque with my cohort and one of the people in my group was saying i hate when you know when i want people to pray for me i hate asking them because i feel like why should you be praying for me you know there’s so many other people who need to be prayed for and all of this kind of thing and and i shared with him that i had had an episode on my way to albuquerque um where i’ve been reading texts from my sister that were still on my phone and they actually it wasn’t a positive idea to do at the time and it sort of sent me into a panic attack i guess would be the closest that i could come to and i just um was changing flights and i was kind of losing it in the airport in the dallas airport to the extent that actually it’s a little embarrassing a little vulnerable to say but some of the people from the personnel from personnel from the airport came out and they were like are you okay you know do you need anything in that moment i texted two of my siblings my husband and my best childhood friend and i said you can’t do anything for me but can you just let me know that you’re there and my friends who were in at the living school with me had been talking about how he didn’t like when you know to ask people to pray for him they said well that’s that’s really what prayer is that like you’ve just defined prayer prayer is really the act of reaching out whether to a uh quote unquote real person a material person or to a divine presence and saying can you bear witness to my suffering so that i don’t hold it alone and i think that that is an extremely powerful and useful tool for for all of us to whether you know whatever way we want to define it or whatever religious orientation we might connect with or or push away um the idea of being able to just open ourselves up and ask that we are witnessed in our suffering is is a prayer modality that is extremely healing and useful i’ve already told you that i met robin years ago when we were in college she now lives in concord new hampshire and is in her 10th year as the rabbi for temple beth jacob a congregation of 200 families
so what is prayer in judaism how how do jews pray when what is the importance and and what are the variety of ways that prayer is part of one’s life
so in in traditional judaism a jew prays three times a day morning afternoon and evening and prayers are essentially made up of three kinds there are prayers that praise god or bless god there are prayers that thank god and then there are prayers that make requests of god and for most of our prayers outside the sabbath all three kinds are a part of the prayer service on the sabbath however prayers of request are generally removed from the prayer service the idea that the sabbath is a day of rest and if uh god rested on the seventh day when humans rest on the seventh day we continue to allow god to rest and so we don’t ask for prayers we don’t ask for things we don’t make requests of god the only exceptions and these are interesting are prayers for peace and prayers for healing we can ask those questions and ask for those things even on the sabbath so three types of prayers three times a day that we pray but that’s the formula and the formality of prayer i think prayer for jews is as individual as each jew is prayer can be a way to speak directly to the divine prayer can be a way to speak directly to oneself and particularly if one thinks that god is within prayer can even be an expression of aspiration what what i’m hoping for right when we pray for peace or may the one who makes peace in the high heavens brings peace to us we don’t know that there’s peace in high heaven we’re we’re hoping there is but it is what we aspire to on earth and for our own lives and for our family and community so we have lots of prayers for peace and again it’s not that we do it because we think each time we say it it’s gonna um it it’s either we’re frustrated because it feels empty because it’s not being there’s no response because there’s so much war and hatred in the world but again it’s something to which we aspire or it may be something to which we seek ourselves we also note that the word for peace shalom shares its root with the word for healing and wholeness which is schleimut and so really healing means to be at peace i i will often somebody tells me that their loved one is perhaps you know in hospice or dying and i’ll ask them if they want to be on our healing prayer list to which the person will say to me they’re not going to get better and you don’t need to put them on the list and i said a healing prayer is not is not about curing healing and curing are two different things one can be healed by dying at peace with the illness one’s had or the cancer or being able to leave one’s loved ones behind or whatever it is that is that is a peaceful you know a way of healing and bringing about peace but that’s not curing those are two very different things and we don’t pray for curing when when when someone is sick we pray for a refuga is like a complete and whole healing so it’s complete you know completeness and wholeness and health and all wrapped up in that sense of peace so the idea of praying for peace with you know where the person is at not necessarily some sort of miraculous cure there’s like that rational mind knowing that that perhaps can’t happen we’re not looking for magic exactly exactly we’re looking for acceptance we’re looking for you know it’s it’s sort of what i think i don’t remember who wrote about it but somebody wrote about the good death right where you know where you have this sense of i’m not in a place of regret i’m not i don’t have um unfinished business i’m not leaving relationships ugly you know all of those kinds of things where you you come to where you’re completely at peace with with the diagnosis and your ex you have an acceptance of it and you know you you’re able to move forward in a place where there’s really a sense of peace and wholeness to you um but but you know that isn’t to say that when somebody has a kind of you know a chronic condition um which isn’t necessarily a death sentence that is the you know those kinds of prayers for peace are for remission their prayers for a particular course of treatment to work successfully even if we know that the person will come in and out of uh flare-ups to their illness um we still pray for you know you know sort of the receding of the of the uh of the condition you know so yes we can we can ask for things that seem not miraculous but i think most people pray quite frankly for themselves whether or not they’re seeking a connection to the divine prayer helps a person feel centered prayer can help a person feel of that sense of peace many people and i think this is really interesting with the yoga practitioner is that you know peace and prayer and meditation often for some are one of the same and they wake up in the morning and they have a practice that involves prayer and it involves breathing and it involves maybe yoga positions so you know it’s all along a continuum and particularly for those who are not traditional jews orthodox jews who who will wake up and say a set of recite a set of prayers that have been predetermined and and many of them you know that is a deep spiritual connection and they feel that connection to god by doing this and they feel that sense of wholeness and completion for others it feels like an empty recitation and they’re you know they do it because that’s what they’re supposed to do but they don’t always find meaning and i’ve had many a conversation with orthodox jewish friends who say sometimes like they admire the liberal denominations where you can focus on a particular prayer or a particular chant or something that brings you meaning in that moment without feeling like you have to go through a whole whitney of things just to get through them because somebody said you were supposed to do that what about community prayer as a community versus prayer alone or someone coming to you and you praying with them how are you what are the differences there so i think for for most people they are overwhelmed in a positive way when they think about the fact that a community is praying for them so people will very specifically say to me can you include my name on the healing list the prayer list i have three people on there in fact one had a stroke around the time she turned in her early 70s she just had her 80th birthday wow she’s probably yeah she’s probably about as far along as she’s going to get in her rehab she has to live in a nursing home probably for the rest of her life but truly knowing that people were praying for her every time we came together as a community and that we still do gives her so much uh joy and hope and possibility um that you know she’s taken up piano she’s taken up a little bit of painting you know she really has found reasons to live and and it helps her so much knowing that her community is praying for her every week every week every time we join together in a prayer service so it’s fascinating and and fabulous to me and i and i have some other congregants similar i have one who has chronic liver disease and she is on registries and lists waiting for a liver transplant she goes for um treatment three or four times a week um and she is you know she too loves coming to synagogue when she’s able to which she’s usually not she’s usually able to she’s usually so exhausted but it gives her strength feeling and knowing that her community is praying for her and even people in a communal setting where they may say a loved one’s name silently so it’s not even said out loud or they say their own name silently there’s this sense for many people that all of these voices together rise up to some place you know the source the divine call it god whatever and from there goes out into the universe and brings healing to all those in the universe who are in need of healing so many many many people nowadays come to synagogue to say a healing prayer whereas a generation or two ago they would come on the anniversary of the death of a loved one now it’s more to say a healing prayer for their loved one i was reading something yesterday uh because i’m trying to do a little research you know like actual scientific studies um about the power of prayer and i was introduced to the term and i don’t have it in front of me so i may be mispronouncing it intercessory prayer yeah yes you’ve got it intercessory prayer it’s that is where you’re praying for people when they don’t know you’re praying for them and the the the attempt is to figure out if it makes a difference in a person’s life are they going to be cured or healed or whatever measurement the uh whoever is doing the study uses when people who you don’t know we’re praying for you pray for you it’s very controversial as to whether or not uh there is a success rate to it you know someone will point out oh well this showed you know more people with cancer were healed or went into remission than in another study the overwhelming majority of studies show no difference at all and i think that’s partly because for people to get a sense of healing or feel an improvement and therefore then report an improvement they need to know they’re being prayed for so as soon as you add that element to it then most definitely the rate of reported healing or feeling better or even possible cure or remission tends to go up because i think people do really benefit from knowing people are praying for them it’s when you do it without their knowledge is a very controversial part of it of whether or not it’s really has any efficacy i’m glad you’re familiar with that you see you’re very i when i was in rabbinical school i did an independent study with a theology professor on and it was entitled you know why pray for healing and so it was all about it was partially about intercessory prayer but it was also about communal prayer and individual prayer and why we pray you know why go into a hospital room and stand by the side of a bed and ask a person if you can pray for them or you can join them in prayer and pray together why do that why do it in a communal setting all of that and i was trying to i was exploring in that paper of whether i could come up with a theological reason for it and i ultimately decided that no i could not because it was so incredibly individual whereas you know someone was seeking god and someone was seeking community and someone was seeking not to be alone i mean they just wanted to know that somebody cared about them and loved them and held them in their hearts and were willing to pray for them and it was just a way to counter loneliness which i think anybody who has had any kind of a chronic condition a debilitating condition knows exactly what the loneliness of illness is
so it just happens that i have a history with you but you’re certainly the right person to talk to about all this oh great
yeah this has been a great interest of mine for a very long time before i moved up to new hampshire i was both a part-time rabbi in a synagogue and i was also a rabbi chaplain for a jewish healing center across three counties in new jersey so i’ve done a lot of this i i’ve worked as a hospice chaplain i’ve i’ve done a lot of it i’ve thought a lot about it i’ve researched it it’s so i mean prayer in general is so individual and i think praying for healing does even more so and i think it’s more so because each one of us reacts to illness so differently so many of us are private people we don’t i remember a member of my congregation a number of years ago had breast cancer she did not want anyone in the congregation to know she did not want to be on the healing list right so i actually keep on the healing list like initials at the bottom where you wouldn’t where nobody would know who they are they you know like say rc maybe there’s probably you know a bunch of people in the community now with the initials rc and it doesn’t even have to be from the congregation that can be somebody i know of and you know in in my family or in you know somebody else who’s just said you know please pray for my uncle richard who doesn’t want to be announced publicly anywhere but so i’ll have those initials down there and i and i will do that with people because even though they don’t want the community to know and they’re very private people they still benefited from knowing that someone was praying for them that someone held them in their heart and you know asked literally asked god for healing each you know so it’s very very very powerful but so individual and it’s so hard to generalize therefore you know you and and we want to allow people to have their prayer life reflect who they are um and especially in a time of illness when everything else in your life is generally not in your control if you’re sitting in a hospital bed everybody else controls you know who comes in when when they poke you when they take your temperature when they do everything when they feed you what you eat everything so if there’s something about it that you can control uh it’s very powerful so being being prayed for by whom when in what capacity is often just the smallest thing to give a person control over well for how how about this um i don’t know what the best term would be i want to say disbeliever that that sounds so negative but someone who is identifies as atheist or agnostic and they’re certainly you know cultural jews or jews who no longer identify as jews but are so jewish have have you had any experience where you know they’re in a time of grieving whether for themselves or some other suffering and they can’t pray but perhaps they are more open to you know meditation or other forms of energy that are less oh oh definitely definitely and that’s where i also as i know somebody i try to either characterize prayer or where the prayer is directed in a way that might resonate with them so as one person once said to me who had a absolutely no belief in god and this was just a general conversation about prayer he said to me you know when i come to synagogue and i say the words of the prayers it’s not because i believe them to be literal he said i just think it adds to the source of energy in the universe that then goes out and touches each one of us she said i don’t think there’s any kind of divine who’s directing it or taking it all in and sending it back out but i do believe in sort of universal energy that our prayers can be added to that energy and so you know when i say the words of a prayer i don’t take the any of the god language literally another person said to me in our house we just add an extra oh and instead of god we think in terms of goodness and so when we pray we’re praying for the good and the well-being of each person we’re praying for goodness in our world and he said and that’s how we practice our judaism you know very active member of the synagogue um it’s it’s not that it keeps anybody from being connected but they’ve made peace with where they have where they are theologically when they have no no belief in god or no sense of god but it doesn’t mean they’re not gonna not gonna participate in prayer because they they recognize and i try to teach that that prayer that prayer is metaphor and i’m not going to tell you what the metaphor is i want you to find it right because because again for each person the metaphor is going to be different that’s why i try to say that people recognize that prayer is often aspirational it’s not a reflection of the way we see the world to be in actuality i know you had your own health scare uh i’m not sure how many years ago but how did that impact you as a spiritual being how did it you know change your relationship to others who go through you know a health scare so um in 2011 i was diagnosed with endometrial cancer so that was one thing but i actually do have two chronic conditions as well so i live with health conditions and scares or you know going in and out of things all the time it has been a challenge to me at times it really has i mean i have to take my own advice sometimes and and think of the metaphor not think literally i remember one time a colleague of mine who was working on his doctorate in in in philosophy and theological philosophy and he asked the question of uh to a whole bunch of people ask the question of what are you most afraid of and the end you know people had you know the climate you know collapsing from climate change and nuclear war and you know all these sort of large catastrophes that could happen and i said to him you know i’m a rabbi and i have something called sjogren’s syndrome that weakens my joints it’s in the family with rheumatoid arthritis and lupus i said you know my biggest fear is my biggest fear is that one day i will open the ark and not be able to pick up the torah scroll that my health will be at some place where i can no longer do what i love to do or what helps me with my sense of identity in the world this is core to who i am and what i do and so prayer for me it’s not the miraculous stuff it’s really that schlemut that that i will have the wisdom to know what tasks to follow that my doctors will have it um that i will keep myself as strong and as possible that i can continue to do these kinds of things i mean i’ve already accepted the fact that the role of what we call hogba which is the person that lists the taurus role at the end of a torah reading i can’t do that i can’t lift it that high above so that the congregation can see it and turn around with it i’ve already given that up but just to pick it up out of the ark that’s what i want to continue to be able to do because my illness mostly affects my hands um that’s where i feel most of my joint pain i also have fibromyalgia so i suffer from muscular pain a lot as well i mean i just sort of have systemic pain throughout my body and so it is for me it is uh um you know a relationship with god who i do believe in who is a source of strength for me uh but really not so much that i expect god to quote unquote do the work but that i do that my loved ones are there for me that my medical providers continue to be wise and caring and things like that that i was going to say that’s the same thing i was seeking in prayer when i had cancer as well you’re open with your community i assume because you’re talking about it on a podcast yes i’m very i’m i’m very open with my community what sjogren’s is how it really differs from the other connective tissue autoimmune conditions is that it is dryness coupled with the muscle pain and the other joint pain and so i have severe dry mouth and dry eye and so every yom kippur i stand before the congregation and before the service begins i actually take a sip of water and i explain that i have an autoimmune condition in which i have severe dry mouth i have to drink or else i will not be able to function and then i talk about the obligation to fast but it is incumbent upon a person if for medical reasons that they must eat or drink that it will be a greater sin for them to fast than to eat or drink and then i recite a meditation prayer written by rabbi simko weintraub that is called a medication for one who cannot do a traditional fast and i offer it to anyone in the congregation who has to eat or drink over yom kippur
jay holland the man i met at a podcast conference is the senior pastor at covenant fellowship baptist church in stuart florida he has a podcast called let’s parent on purpose i spoke with jay shortly before the hurricane dorian approached the bahamas
so let’s say you meet someone in one of these you know events that has nothing to do with your church or your community and they find out you’re a pastor and they and they’ve never been affiliated with any sort of religious group and they ask you what is prayer how would you explain that i would say uh on just the most basic level prayer is talking to god it’s the way that that we interact with god um which is a pretty incredible privilege if you think about it i mean i it would take me a few weeks to get an appointment with the mayor of my little town here in stuart it would take me some real connections to meet the governor of florida and and i don’t even know how i could meet the president of the united states but the creator of the universe allows us to come before him anytime we want that’s a a humbling and awesome thing so prayer is prayer is talking to god and are there different ways to pray you know such as alone as a community silently reading scripture how about those different pathways sure yeah absolutely i think um you know when you ask other different ways to pray you think about your relationship with with anybody else are there different conversations that you’ll have with them you know i’ve been married for 12 years and and i love having really engaging conversations with my wife but sometimes i just like being by your side you know we sometimes our time off is just happily being next to one another enjoying the presence of each other even if we don’t have a lot to say so um you know i think prayer a really healthy way sometimes is you know if you don’t know what to pray uh realizing that the book of psalms in the bible it’s it’s a song book it was ancient israel’s song book to god and and most of them are prayers to god and what’s really interesting as you start to get into them is there was a lot of complaining and and i and i actually appreciate that that god found it worthwhile in in his scriptures to show us so many examples of prayer where people’s lives were very messed up where they could not see the other side um where they weren’t just giving god a bunch of false platitudes but they were saying god how long is this going to last i feel surrounded you know there’s one of them that psalm 88 that even ends with you know and darkness is my only friend so there’s some real depths of despair sometimes in prayer but i think i think some of those are the the greatest acts of faith that you can have because to to go to god and say i don’t know what’s going on i don’t trust you know i don’t even know how to trust right now but i trust enough to still come to you is is a pretty extreme act of faith so can you speak to the power of prayer as
an action of practice for people who are going through
some sort of chronic uh challenge be it emotional physical
spiritual yeah absolutely as a matter of fact i can and give you uh just three examples and and and you feel free to use what’s helpful to you uh the first is i i this i’m actually in my second marriage my first marriage i married my high school sweetheart um after five years of dating right after we graduated from college and had a good happy marriage and you know had its bumps just like every young marriage does um that we really loved each other and were doing really well and then she came down with an autoimmune disease called ulcerative colitis and this girl who was full of faith and full of love you know spent days after days of misery and complete agony and every time we would try a treatment she would have an allergic reaction to it or something would go wrong and i mean that the number of different weeks we spent in the hospital and and between that just the number of weeks that she spent at home unable to go out unable to travel um you know there’s some real depression that hit in there and i remember one of the things that that christie would do is she would write out prayers and she would tape them all around the house so you know i would go to the bathroom and there would be prayers and bible verses taped up in there i would walk down the hallway like anywhere anywhere that you’d been it was like a breadcrumb of prayers of just calling out and hope and a lot of it was like lord i don’t understand what’s happening um i don’t know what you’re doing through this but but i still need you and um there’s some incredible comfort in that of of just realizing you know you don’t have all of the answers but you can go to the person who does now she ended up actually dying of the complications of that sickness and so that would be my my second one is um you know leading up to her death as a husband as a caregiver watching the the person i love so much just have everything go wrong there’s a there’s a lot of crying out to god in prayer but also just finding my strength and soulless in that time and i can tell you that just the regular disciplines of of going to god of making that a regular habit and not just going when things are bad but going on a normal basis uh those were things that that prepared me for when she died to be able to walk through that time it was almost like it was almost like in my life god had used her sickness to prepare me for the bombshell of being 27 years old and a widower and so you know i remember during that time just simple prayers of you know and i had a little three-year-old girl with her um and so it was like i i’m in a time where i remember one of my prayers during that time being god i just have a lot of decisions that i have to make but i am just so emotionally and spiritually drained i know i could make some very bad decisions that would affect me and my daughter right now and so god i’m just gonna i’m gonna walk in faith i don’t have enough strength to just sit and discern the right path in every way so i’m going to move and walk and lord i’m just going to ask that you close any door that might be harmful in my life and and i looking back see that god answered that and he did it over and over again not that i made every right decision but it was just amazing with hindsight how many doors he closed that would have been really foolish or harmful and so just as a caregiver of in that depths of loneliness uh a lot of complaining prayers but also gratitude and and thankfulness and how knowing that other people were praying for me and their actual prayers not just the knowledge of it but the fact that people were praying for me lifted my soul and helped me to move on and just gave me great healing able to just celebrate the life that we did have together and the fact that that you know christie is is dead on this earth but that she’s not dead that that she’s alive and with jesus and uh you know knowing that that’s not the last time we’ll see each other was was an incredible help it you know it didn’t make the day-to-day missing her easier but it it made it to where grief was not the monster that could completely consume my life and then the the third example that i would give you is uh just over five years ago in april of 2014 my little five-year-old boy elijah spiked a fever one weekend and on monday when we got him into the emergency room we found out that he had acute lymphoblastic leukemia and so you know from from that morning to mid afternoon that day just the complete floor fell out from underneath us but i even remember being in the back of the ambulance because we were in a little you know small town hospital emergency room and they said the ambulance is coming to take you to the children’s hospital in west palm beach and and i had just let two or three people know you know i’d let my pastor know and my parents and you know my wife was with me but just driving in that ambulance in the back and and starting to get texts from this friend saying hey tell elijah we’re praying for him hey tell elijah we’re praying for him and i feel like that just did not stop for three and a half years of um i i i don’t know that i don’t know that we win a day i know that we never went a day without somebody praying for us but i don’t know that we went a day without somebody reminding us that they were praying for us and um and god used that and i think one of the things that god does is it’s it’s hard to pray for somebody and then not get emotionally and spiritually invested in how they’re actually doing and so you know people would ask what can we do for you it’s like i don’t know you can’t cure my son from cancer so you know just pray and in praying they came up with things to do to help our family um i mean we it was like we went through an extreme makeover homeowner addition when we were down in the hospital we had we had people swarm into our house rip up all of the carpets lay down hardwood floors bought a new heating air conditioning system that had one of those uv lights in it to kill bacteria um i mean that like they they probably put 20 000 in remodeling in our house in the first two weeks that we were in the hospital and and i think all of that was really launched from prayer from just people lifting up to god you know lord help him and sustain this family and what can we do and then god puts things on their hearts and they and they walk so you know that’s the i think that’s one of the beauties of prayer is it’s not a one-way street i have never had god audibly speak back to me but i i mean my my life is just littered with the trail of god stepping in and speaking and you know i’ll sometimes lament about something in prayer and somebody will come along that day and give the answer that i was looking for and and even if i can’t like even if even if my prayers of that day you know like if god doesn’t answer it um sometimes i’m just able to let go because of being able to to just give it to god you know jesus has cast your burdens upon me and cast all your cares upon me and so being able to do that is uh it’s freeing like i don’t have to control the world and i don’t even have to control everything in my life i realize that that there’s somebody who loves me even more deeply than i love myself who i get to interact with and and to lay things at his feet and you know jesus told a parable about god the father saying you know which of you who’s a father if his son asked him for a fish would give him a snake and uh and saying if you being evil know how to do good things for your kids how much more of my heavenly father will do good for those who love him and so i just you know trusting that if i don’t see the answer that i’m looking for right now it’s because because in the grand scheme of things god has something bigger and greater and you know and i’ll be honest like i’ve been really really not happy with that answer in the moment but but over the course of my life you know given a little bit of depth and perspective i just i see the hand of god and what a joy to get to go to him not just when things are bad but also when things are good and when things are just normal you know like one thing about thinking you’re going to lose your son to cancer is is every day is a gift you know the most normal mundane day when nothing remarkable happens is an absolute treasure and remembering to go back and thank god for those treasures um is just something that that i think we fail to do quite often like you know when’s the last time you thanked god for your opposable thumbs well you know wait till you hurt one of them and then all of a sudden it’s a big deal but um we’re just so littered with gifts in our lives and and i think prayer lifts our soul
and your son elijah five years right five years uh this august actually i think maybe the day we met leslie was was five years from the first cancer-free diagnosis that he had so we keep having celebrations and with his it’s actually five years post treatment before they consider the very uh he’s very high risk for relapse but you know every day we go on as a is another victory day and lowers the chances of relapse so we’ve got another two years of um that cloud kind of being over us but but it’s you know what i’ve got four kids and i’m not guaranteed tomorrow with any of them so elijah’s just the one that gives us perspective on all of that there’s one more thing that i think especially coming from a uniquely christian perspective that is so empowering in prayer in the book of hebrews uh it talks about how jesus is our great high priest and the role of the priest was to come before god you know in the old testament the role of the priest was to come before god on behalf of the people but now we get to go directly to god but we do so alongside jesus and and in hebrews it says we have a great high priest who understands us because he has suffered in every way like we have yet without sin and when i really realized what that meant it meant that you know because like i know jesus was god and i know he was fully man and fully god but i sometimes think that he didn’t live the kind of drudgery life that we do sometimes but he was born into an impoverished family he grew up you know as a day laborer basically as a carpenter he you know in his ministry he was homeless he knew hunger he knew pain he knew betrayal by best friends he knew people in his family not understanding him and laughing at him and thinking he was crazy and so you know one of the confidences that i have in in going to god in prayer is that i you know as i go in jesus name you know and jesus represents me he understands my suffering and and to me that’s having a god that understands our suffering is is pretty profound and i think is is one of those calls like why would you not pray if that’s the case well thank you jay yes ma’am i wish you and your family peace during the storm and i’ll be watching the news and and sending my prayers to i appreciate it yeah i appreciate it and leslie how could i pray for you i just i don’t know that’s a that’s a good question but just recognizing me and who i am and when i do is is uh solace to me
well good what can i pray for you right now sure all right lord i just thank you for this time with leslie i thank you for putting us in front of one another at the podcast movement and having listened to her podcast some and hearing what she’s doing i just thank you for her i thank you hal she has not fallen into letting this this condition that she has letting letting those challenges be her story and and she’s not fallen into living the rest of her life as a victim and god i pray that as she puts together these podcasts that she uh mentors people god i pray that you would help her to see the goodness of god in her life i pray that that jesus would be very real and evident and i pray that you would help bring the the very people to this show that can be most help we know that there’s so many people out there just on their last ropes so many people in despair and i pray that they could find the show that they could find great comfort in it and that you could help leslie know that she’s doing a really worthwhile work and i pray that you would make it very fruitful in jesus name amen amen thank you jay 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 glass half full dot online
November is the time to recognize Family Caregivers. One man’s caregiving story leads to a conversation about strokes – one of the most debilitating medical conditions – and stroke recovery. Erica Pitsch, PT, MPT, DPT, NCS, of University of California, San Francisco, explains what happens during a stroke and what may be involved with stroke recovery and rehabilitation.
Dr. Pitsch works with stroke patients at this San Francisco location. To hear advice about balance and falling, listen to this earlier podcast episode. Check out the Balance Rap Song on the Glass Half Full YouTube channel.
Maybe you have a firm grasp on what Patient Advocacy is all about? This episode explores different ways people with disabilities, their allies, and their caregivers practice advocacy. Whether you’re searching for the best healthcare options, leading a support group, mentoring newbies, meeting with legislators, or using social media to get a message out — it’s all about advocacy.
Nancy and her friends meet Senator Cory Booker at a national Parkinson’s Disease Advocacy Conference
Nancy Husari, a retired college instructor with Parkinson’s disease, felt empowered by her advocacy experiences at California’s state capitol and in Washington, DC. Brook McCall, Grassroots Advocacy Manager for the United Spinal Association talks about her work. Marla Murasko, a Down Syndrome Mom Advocate, shares her advice and experience using social media platforms for advocacy. Nina G., comedian, professional speaker, storyteller, writer and educator, discusses how to be a disability ally.
Loose Transcription
Hello and welcome to our episode about Advocacy. I’ve been thinking about this topic for a few months and have asked previous podcast guests about it – how do they define advocacy and what actions do they take toward advocacy – because I believe advocacy can have multiple interpretations. There is no one correct answer. This episode didn’t gel for me until I heard about a friend who went to Washington, DC for an advocacy conference. More on that friend later.
I admit that perhaps my first idea of advocacy included images of going to a state capitol or local offices for government officials, or legislators, and asking for something. Years ago, when I was on my city’s library board, I did just that with a group of library-loving citizens. It was informative but it didn’t jazz me. Perhaps I lack that type of advocacy in my DNA? Not that I question its importance but…I’ve found my inclination toward helping my fellow patients – my community – a more suitable endeavor.
Just what is an Advocate? The dictionary definition says an advocate is someone who speaks or writes in favor of something…they recommend something publicly. My life as an advocate began when I assumed the role of support group facilitator. I began to learn more about neuromuscular disease and how it impacts others – patients with different conditions than mine, their caregivers and families. I listened to these stories and integrated them with my own story and experience and over the years have helped to create programs and opportunities to not just suit my needs and desires but perhaps others who may not have the energy or opportunity to advocate for themselves.
It is my hope that through the stories of my four guests you’ll learn about advocacy efforts that may be suitable for you. Not everyone can go to Washington DC and speak with senators but perhaps you can write a letter, make a phone call, use social media, or cultivate a network of allies?
The first guest is my friend, Nancy Husari. I know Nancy from my local community here in Alameda. We met at a yoga class years ago and she’s in my book club. Nancy is a recently retired community college instructor. I asked Nancy if she calls herself an artist and her response – in line with her whimsically dry sense of humor – is that she prefers being called a FLÂNEUSE. That’s F – L – A – N – E – U – S – E with a little thingy over the A. It’s French; I wasn’t familiar with the word. You can look it up. I thought she was referring to the nasal decongestant…but…no.
Nancy was diagnosed with Parkinson’s disease nearly 5 years ago. She didn’t share the news with me until a year or so after her diagnosis. She was still working full-time and her public acknowledgement of the condition took time as I’m sure many of you are all familiar with this process. Here’s our conversation about advocacy.
Nancy
I’ve been political active since the Vietnam war. A big part was through my Union. Lobbying advocacy was with Headwaters Forest when they were cutting down the Redwood trees in 1995. Our union got involved in it. what happened we got involved; the main thing was to divest state retirement teacher’s funds from a corporation. The first time we had cross pollination between labor and environment. They were both being screwed. I ended up being the person to speak in southern California. I was quoted in the newspaper. I saw a small group of people can really make a difference. You don’t really have to know anything or be an expert. All you have to do is show up and try. Later that turned in…I saw how we got what we wanted there. When the opportunity came for me to get involved with Parkinson’s, it was a natural fit for me.
I was too busy having Parkinson’s, working, and commuting. It’s a natural fit for me. What is advocacy? To me it takes political action into a specific realm with communication with our legislators…specific asks about policy. For me it means face-to-face meetings with staffers and legislatures. Advocacy does have all those meanings. My cat has small cell lymphoma and I am acting as his advocate. We all need an advocate to help us through the healthcare system. We’re doing it as a community.
what was your engagement with the structure, Parkinson’s disease organizational structure? We’re really lucky in the east bay to have PD Active – it’s not political like Michael J. Fox is. PD Active has a good support group, has a lot of exercise classes, and getting into a mentoring system. So people who are newly diagnosed have someone to show them the ropes. I needed that. I put it together piecemeal for myself. I would say I started this before going to Washington DC, I unofficially act as a mentor. I tell them about the options, medications, support groups…I think I pretty much covered it. I believe people have to take that first step. Get a moving disorder specialist. I just paid for a third opinion. There’s no diagnosis for Parkinson’s; there’s no bio marker. Only get an autopsy. It’s connected to advocacy work. I talk to people about exercise because that’s really important with Parkinsons; it’s not just everyone should get exercise. It’s as important as the drugs. Also just being an example telling people when they are first diagnosed they’re going to be really upset. But for me it has gotten better. I’m still able to do what I want to do…but I used to be able to put on a backpack…long hike for me is 5 miles. It’s not the end of the world. That’s how I see my role as an unofficial mentor to people. It was called Parkinson’s Policy Forum and run through MJF Foundation. It was really a great experience. I got an email from…do you want to apply for the forum? I did not think I would be accepted. I didn’t know anyone that would write that letter. I mentioned that I did lobbying in Sacramento. I was accepted. It was well organized, speakers, they taught us general things…Cory Booker spoke about his father who had Parkinson’s. they told us the Dos and Don’ts. It was empowering to be in a room with hundreds of people who have the same disability that I have. Maybe some were in wheelchairs. You have on and off periods. When the meds wear off, you really feel it. I saw a group of dynamic people that you didn’t need to explain things to. It was uplifting, energizing. I like being around people with the same disability and are real go-getters, being the same people they were before.
In an earlier podcast episode exploring how weather affects our health, I spoke with Brook McCall. Brook is the Grassroots Advocacy Manager for the organization United Spinal Association. During that conversation, I took the opportunity to ask Brook what advocacy means for her.
Brook
I am working with the United Spinal…it’s a relatively new program. A network. We have someone in most states. Point person for advocacy. Make connections with legislators, working relationships going forward. Advocacy is an awareness. It’s anything we’re doing to make people understand what we need for our unique lives. Making sure we have allies. People know…simple things out there to make our lives better. [what was your path to becoming a vocal advocate?] agreed! I’ve been amazed lately. For me it was a slower process. When I was in the hospital for my injury; it was the first time I was in a hospital. I learned about the insurance system. I was mind-boggled. I had family, resources. I empathize the same things are being navigated by people without the resources. I just ended up going back to school, I studied public health. How many more advocates are needed? You need to speak to the policy makers. I remember that conversation. Over the years I’ve been able to get more involved.
Brook mentioned allies. The term, disability ally, also came up during my conversation with Nina G. Nina G. was featured in our previous episode, laughter is the best medicine, because Nina is a stand-up comic. But Nina wears many hats in addition to being a comedian – she is a professional speaker, storyteller, writer and educator. Nina, who grew up with a learning disability and is a stutterer, brings her humor to help people confront and understand disability culture, access, and empowerment. She is certainly an Advocate for the disabled community so I asked her to explain the term, disability ally.
Nina
What is a disability ally? I have two friends – Hope and Elizabeth – how to be an ally for someone who stutters. If you want to be an ally to someone with a disability, you ask how do you want me to help? a big part of it to look at yourself and why do I want to be an ally. Is it about me? Steve Danner is a little person. We went to Seattle we went to NBC stand up for diversity which neither of us advanced on; what I noticed when we were everywhere people started at him. They get stared at constantly. This was so friggin awful. I started to stare at the people who were staring at him. I’m making this about me. This is me being angry. We talked about it. we want to be an ally to different people, in different groups. I think it needs to come down to genuine places. A drunk comic said to me…Dave sat there and was annoyed for me. He explained it’s a brain thing and has nothing to do with you. that to me is being an ally and they can just take it because it’s a relationship they have.
Each of these guests you’ve heard from has a disability. You don’t have to have a disability to advocate on behalf of people with disabilities. Like Nina described, there are disability allies. And there are also caregivers who make advocacy one of their goals. Marla Murasko is a Down Syndrome Mom Advocate and Inclusion Influencer. She uses social media as her main form of advocacy.
Marla
I started out with Facebook. That’s where my community was – mothers of children with Down’s syndrome. Social media is constantly changing. Instagram being visual; I need to share my message of inclusion, it’s easier for me to do it on Instagram. Drive people back to your blog. Instagram stories. Use it to bring real life to your blog. I’m connecting more and having more intimate relationships with families on Instagram. Businesses are drawn to it. I feel I need to be. I do Facebook Lives. The patient leader or advocate…
I think LinkedIn can be vital to health advocates if they are looking to connect with companies, health industry leaders. Share stories on, may get organizations to collaborate with you. they may invite you to speak at events. Have a presence on LinkdedIn. I’m taking what I put on my blog I put it on LinkedIn.
I’d love to hear from listeners about their advocacy experiences. Feel free to comment on the podcast notes for this episode on the Glass Half Full website. I’m sure we haven’t covered all the ways people can advocate for themselves or their loved ones.
No matter how you choose to express yourself as an Advocate I think it means taking the next step from being alone with your condition or disability. Stepping outside yourself, perhaps outside your comfort zone. You may never aspire to visit your State Capitol to speak with legislators but don’t dismiss it as a possibility. Here are some final words from Nancy and they are definitely motivational…
Nancy
I would encourage anyone who knows and loves someone with a neurological disease to get involved with advocacy whether it’s just signing letters, staying informed. From my experience, it really works. The more personal the interaction is…an email is great…face to face…I’m getting a lot of bang for my democratic buck. They really do what people say. They’re open to the constituents. Pictures are good. …when you see the off periods, it’s really devastating
In the continuing series, Food=Medicine, Cooking with Love explores different interpretations of how love can be a vital element in the food we eat. Whether it’s part of the mission of a local organic farm, a vegetarian chef preparing pureed, nutrient-dense food for her father with progressive Parkinson’s disease, or another chef infusing fine dining, multi-coursed meals with cannabis — each guest offers a fresh perspective for mindful eating.
Lacey Sher, owner/Chef of the Encuentro pop-up restaurant in Oakland, CA shares two recipes for nutrient-dense smoothies. Aleta Pierce, farm manager for Alameda Point Collaborative’s farm2market program, welcomes farm volunteers and CSA subscribers. Michael Magallanes, San Francisco-based chef, prepares meals for private clients.
Sweet and Green Protein Smoothie
hemp milk, coconut water, or spring water
handful organic fresh or frozen blueberries
handful organic fresh or frozen raspberries
4-5 leaves of lacinato kale or romaine
handful of parsley
2 scoops hemp protein
3 pitted dates
1/2 avocado
– add ingredients into your Vitamix or blender
– blend together until super smooth
– pour into your favorite to go jar or mug
– sip slow and enjoy!
Berry Banana Antioxidant Booster
This smoothie is full of colorful foods, such as berries and cacao, which are loaded with a wealth of vitamins and antioxidants to help the body stay strong and vital. Plus with B-vitamin dense maca, omega rich hemp seeds, and beauty boosting coconut oil, this smoothie is filling yet completely whole and natural, assuring optimal function of body and mind. Enjoy!
3 cups of water or herbal tea
1 cup frozen organic blueberries
1 cup frozen organic strawberries or raspberries
1 frozen or fresh organic banana
handful of cacao nibs
2 tablespoons raw coconut oil
1/3 cup hemp seeds
2 tablespoons maca
1/2 stick vanilla bean or ½ teaspoon vanilla extract
optional: 2 tablespoons spirulina, your favorite green powder, or vanilla
Sweetener of choice: 3 tablespoons honey or agave, 2-3 pitted dates, or 3 drops stevia (Stevia is very sweet and strong. Use the least amount to taste.)
– add ingredients into your Vitamix or blender
– blend together until super smooth
– pour into your favorite to go jar or mug
– sip slow and enjoy!
These are simple and delicious and folks can use less fruit for less sweetness. I also like to add different ingredients such as chia, moringa powder, sometimes different vegetables like cooked or raw sweet potatoes, substitute spinach for kale if I have it. So many options. ~ Lacey Sher
Resources for Dysphagia (Swallowing difficulties)
If you truly want to understand the mechanics of dysphagia, check out this recorded webinar with the author of the textbook, Dysphagia: Clinical Management in Adults and Children, Michael E. Groher, Ph.D. It’s about an hour in duration but you’ll have a much better understanding of what this condition is.
Here is a community-generated recipe guide for people with swallowing difficulties. Recipes were submitted by caregiving family members.
Here is a recorded panel discussion about food preparation for people with dysphagia. Additional resources can be found here.
More Food=Medicine Podcast Episodes
The first Food=Medicine podcast episode included Retired Navy Lieutenant Laura Root and Edibell Stone, LPC & health coach talking about their respective diets. The second Food=Medicine podcast episode featured Jill Nussinow, The Veggie Queen, at the Farm to Fermentation Festival. Jill is a Registered Dietician and author of cookbooks and DVDs. If you want to go deeper into an understanding of fermented foods and their healing properties, check out this episode with fermentation guru, Sandor Katz. This episode explores the ancient tradition of Ayurveda through one woman’s health and diet journey.
In the continuing series, Food=Medicine, Cooking with Love explores different interpretations of how love can be a vital element in the food we eat. Whether it’s part of the mission of a local organic farm, a vegetarian chef preparing pureed, nutrient-dense food for her father with progressive Parkinson’s disease, or another chef infusing fine dining, multi-coursed meals with cannabis — each guest offers a fresh perspective for mindful eating.