Tuesday, April 30, 2019

TV Tuesday: The Other Two

I usually watch a TV show on my own at lunchtime on weekdays, but sometimes I don't have time for a full hour show and just want a brief respite of comedy in 30 minutes (or less). My favorite podcast, Pop Culture Happy Hour, mentioned a new show on Comedy Central, The Other Two, so I gave it a try and am really enjoying it. It's a fun comedy that also is also insightful, very clever, and full of heart.

The premise is that an adorable thirteen-year old boy made a music video that went viral and now the whole world is going crazy over ChaseDreams ala Justin Bieber. But the show isn't about Chase. The title refers to his two older siblings, Brooke (played by Heléne York), a former dancer, and Carey (played by Drew Tarver), an aspiring actor and current waiter, and the effects of their little brother's newfound fame on them. Molly Shannon, of Saturday Night Live fame, plays their mother who is a bit ditzy but really cares about her kids and is getting swept up in Chase's fame. Ken Marino plays a goofy, inexperienced manager with dollar signs in his eyes, and in later episodes, Wanda Sykes is added to the cast as a hilarious publicity manager. Each 30-minute episode is titled about a different milestone in Chase's career, while the action really focuses on his two kind but hapless older siblings. For instance, when ChaseDreams releases a sweet new music video with the lines, "My brother is gay, and that's OK" (cleverly titled Chase Gets the Gays), Cary's life is suddenly thrust unwillingly into the spotlight. A few episodes in, Brooke becomes Chase's personal assistant.

I am loving this show! It is funny but also very clever in its portrayal of our fame-hungry, social media-driven society. It's not played just for laughs, though. With each episode and each new set of challenges, both Brooke and Cary begin to grow a bit, learning to respect themselves more, and, as young adults, trying to figure out what they really want out of life. As you can imagine, Molly Shannon is great in her role as the mom, as she, too, comes out of her shell and starts to find herself, as her young son's career skyrockets. It's a warm, fun, intelligent show about coming of age in our crazy world today, in the shadow of a sibling's spotlight.

NOTE: As with most Comedy Central shows, this one can sometimes be explicit in terms of language and sexuality.

I've watched eight of the ten episodes in season 1 so far and want more! I've been watching it On Demand, where all episodes are still available. It is also available on Comedy Central's website, though only the first episode is free to all - you can see the other nine by signing in with your cable, TV, or satellite provider. You can also stream it on Amazon for $1.99 an episode or $16.99 for the season (or for the same prices on YouTube).



Sunday, April 28, 2019

Weekly Inspiration: Helping Others Makes Us Happier

Sorry for the hiatus here on the blog - I had three exhausting trips within a two-week period and am getting ready for two more! It's just been a hectic, tiring time for me. But I am trying to keep up the blog and my work with our online support groups as much as possible...which brings me to the topic of today's Weekly Inspiration - Helping Others.

The title if this new TED Talk caught my eye: Helping Others Makes Us Happier But It Matters How We Do It. It's an interesting, fun, and inspiring  talk (and under 15 minutes long!) by social psychologist Elizabeth Dunn, who studies giving and happiness. Check it out:



So, you may be thinking that this talk isn't relevant to you. After all, few of us are able to help renovate a home for a refugee family or serve meals to the homeless. But Dunn's talk - and her research - struck a chord with me because it's something I have learned as well through the past 17 years with chronic illness, that helping others is very rewarding and increases my own happiness. I started this blog more than 12 years ago, not thinking about helping others but just needing to tell our story and hoping to find a few others out there in the wide world who could relate and understood our challenges. Of course, never in my wildest dreams did I imagine back then that there were many thousands of people just like me - and parents with sick kids like us - that I would connect with. Gradually, as we found treatments that helped to improve our lives, I also realized that I could not only connect with other patients but maybe help them, too.

The blog led to forming a local support group of parents (which has grown to about 40 families with both sick kids and sick adults) which led to forming several online support groups. In each case, I found that the ability to help others - from my couch! - not only made all my time and effort worth it but also seemed to make our own struggles with chronic illness worthwhile. Being able to use our experiences to help others gave us purpose...and yes, increased happiness. I can't describe how immensely proud and happy I was when I heard my son, at one of our local gatherings, explaining to an older man with ME/CFS, many decades his senior and who had taught at his school, all about Orthostatic Intolerance (OI) and how to treat it. It's a powerful feeling to be able to help others.

And it's not just about sharing effective treatments and new research - emotional support is just as important, if not more so. Every time you reach out to another patient, even online, you let them know there is someone out there who understands what they are going through and who cares. When you are isolated and housebound with chronic illness, that simple message of connection and compassion means so much, and as we discovered and Dunn explains, the rewards you get back from reaching out to others are immense. You benefit from that connection, too, as well as the satisfaction of helping a fellow human being. It's powerful.

So, while it is definitely worthy to donate money to ME/CFS charities (especially when you read abut the amazing research breakthroughs being made every day), as Dunn points out, you get far more benefit from actually being involved and seeing the effects of your help first-hand...and it doesn't cost a thing!

There are all kinds of discussion forums and online support groups out there for ME/CFS and related diseases. AMMES has a list and a search engine for both in-person and online groups and Phoenix Rising has a popular discussion forum anyone can join. Here are more tips for finding others locally, from my article Birds of a Feather: The Joys of Community.

There are hundreds of ME/CFS patient groups on Facebook - if you're not on Facebook and don't want to mingle with friends and family there, you can set up an account using a pseudonym - some people use their first and middle names only or create something entirely new - and use Facebook solely to participate in groups. Here are some to consider:
And you can reach out to other patients right here on this blog (and many others), just by leaving a comment - same with Twitter or other forms of social media.
The bottom line is to connect - online, in-person, however you can manage it! You will feel the rewards of reaching out to help others, and you will also benefit yourself from the friendship and camaraderie of others connecting with you.


First time our local group gathered, in 2010 - all good friends now!

Tuesday, April 16, 2019

TV Tuesday: The Enemy Within

I'm back! My husband and I have been off on two trips this past week - a few days of camping in Virginia (very relaxing) and a long weekend in Oklahoma for a family funeral, culminating in an 18-hour trip home through 4 airports, on 3 flights, finally getting home at 2 am last night! And we leave again in 3 days for Easter with my family. Just trying to catch up and catch our breath in between!

So, I haven't been on the blog for a while and wanted to tell you about a new TV show we are loving, The Enemy Within - we even watched it on my laptop in our hotel room this weekend.

Jennifer Carpenter, of Dexter fame, stars as Erica Shepherd, a woman who is viewed as public enemy #1 and a traitor after she gave the names of fellow CIA operatives to a notorious terrorist who then killed them. Now, that terrorist, Tal, has set off multiple bombs, killing numerous people, including FBI agents. FBI agent Will Keaton, played by Morris Chestnut (who we enjoyed on Goliath and also starred on Rosewood), decides the only way to finally catch Tal is to bring Erica out of prison to help. One of the agents that Erica helped Tal to kill was Will's girlfriend, so he doesn't trust Erica, but he needs her. His colleagues, including Daniel, played by Raza Jaffrey, and Kate, played by Kelli Garner, are against this plan and consider Erica to be a terrorist herself, but Will soon finds out from Erica that there is far more to her story than was reported in the news. She shares her secret with Will but insists he keep it quiet for personal reasons. Besides wanting to catch Tal, who used to be her main target in the CIA and whom she knows better than anyone, she is desperate to see her teen daughter, Hannah, played by Sophia Gennusa, again. Erica and Will begin working together to find Tal, despite the protestations of the rest of the FBI team, while Erica is now imprisoned in a cell at the FBI. Each episode provides another piece to the puzzle of this violent terrorist.

We loved Carpenter as Dexter's sister, Debra, on Dexter and are thrilled to see her back on the screen in such an excellent thriller series. She is just as good here as Erica, as is Morris Chestnut as Will, as the two slowly begin to trust each other. Each episode is suspenseful and action-packed but also thoughtful, slowly digging deeper into Erica and Will's backgrounds as the two start to understand each other better. Erica is a brilliant CIA operative and analyst, and she slowly begins to prove her worth to the resentful FBI team, as they catch various Tal operatives, though the man himself remains tantalizingly out of reach. We've watched six episodes so far and are totally hooked. In fact, this is my favorite of the new batch of early-spring shows, and I can't wait to see each new episode. Both Erica and Will are complex and interesting characters, and I am eager to see what happens next in their joint mission to catch this notorious terrorist.

The Enemy Within is currently airing at 9 pm on Mondays on NBC (ooh, that means there should be a new episode On Demand today!). We are watching it On Demand, and also watched an episode on the NBC website while we were traveling. There are eight episodes currently available of the 13-episode season. It also seems to be available on Hulu or you can stream it on Amazon for $1.99 an episode or $19.99 for the first season.



Thursday, April 04, 2019

HAPPENING TODAY: ME/CFS Conference & Contact Your Congress Reps






I've been snowed under this week, preparing for three trips in the next two weeks (wish me luck!), so I am a bit late on this, but there is still plenty of time for you to participate in these two events happening today and tomorrow:


NIH Conference: Accelerating Research on ME/CFS
This much-anticipated conference is going on today and tomorrow (Friday), through 6 pm, so there is still plenty of time to watch it on Livestream. The speakers are all a Who's Who of top ME/CFS researchers, presenting the latest research findings, and tomorrow morning there is a Clinician Panel Discussion featuring treatment advice on different topics from five of our favorite top ME/CFS experts, who have helped so many patients (including my son and I!) - Dr.'s Bateman, Levine, Montoya, Peterson, and Rowe.

You can read the agenda for the 2-day meeting here.

And you can join the Livestream here now and/or watch the recorded sessions later here. I'm going to have to settle for watching the recorded sessions later, so please let me know if you see anything interesting that I shouldn't miss!




Solve ME/CFAS and #MEAction Advocacy Week
Hundreds of patients and their families and friends have gathered in Washington, DC, this week to lobby their Congressional representatives in person for additional funding for ME/CFS, as well as other needed actions. But there is still time for you to help, right from your couch or bed!

This page provides all the details. From that page, you can send a letter to your Senators for an upcoming appropriations bill, call your Congressional representatives, and share these actions on social media.

Here's a quick link to send a message to your Senators, asking them to sign two ME/CFS-related appropriations letters currently being circulated (April 9 is the deadline). I just did this, and it took less than 5 minutes! All you have to do if fill in your contact info and add a personal message, if you want to - the specifics of what you are asking them to do are already detailed in the letter for you.

Sorry again for the lateness of this post...but there is still plenty of time to participate in both of these events, right from your home.

We need all the help we can get, so add your voice to this important call-out. It only takes a few minutes!

Tuesday, April 02, 2019

TV Tuesday: Manifest

Way back in September last year, in my Fall TV Preview, I mentioned that one of the shows I was most looking forward to was a new NBC show called Manifest. My instincts were right, and my husband and I thoroughly enjoyed every episode in the first season of this twisty, suspenseful, mysterious show.

In the first episode, an ordinary American family is returning from a vacation in Jamaica: brother and sister Ben and Michaela Stone, played by Josh Dallas and Melissa Roxburgh, their parents, and Ben's wife, Grace, and their twins, Olive and Cal. They are happy and relaxed, waiting in the lounge area for their flight home to NYC, when the airline announces (as they so often do) that they are overbooked and looking for volunteers to give up their seats and travel on a later flight. So, Mom, Dad, Grace, and Olive head home as planned, while Ben, Cal, and Michaela wait for the later flight. On that second flight, though, they hit some terrible turbulence, worse than anything anyone has ever experienced before. Finally, they get through it and continue to New York, where they land safely, though their plane is immediately surrounded by police and other emergency vehicles. After disembarking, they discover that they have been missing and declared dead for over five years. It's impossible, but there they are, all 191 people on that plane, back from a 3-hour flight. All of their friends and family have aged five years. Olive is now five years older than her twin brother, Cal. Worse, many people at home have moved onto different lives or new relationships.

There are so many intriguing pieces to this complicated puzzle.  The show is a family drama, about people readjusting to each other after a five-year absence and all the complexities that result. It's a mystery: what happened to that plane? How is this even possible? And then it takes even more of a supernatural turn, as both Ben and Michaela begin to hear voices in their heads, often telling them to do something, after returning home. It's an intriguing, convoluted, compelling story with twists and surprises - both personal and universal - in every episode. We absolutely loved it, with some of the bizarre things that happened reminding us somewhat of Lost (though perhaps with a bit more focus and purpose!). The acting is all very good, and we especially enjoyed the main characters. Jack Messina, who plays young Cal, plays a growing role as the season continues, and is excellent. All in all, we enjoyed every episode and can't wait for season two!

All episodes are still available free On Demand, if you have cable. Some of them are also free on the NBC website (looks like #1 and #12-16), while the rest need a login from your cable provider to unlock. The first season is also available on Hulu, and it looks like Amazon is trying to get it for streaming (I would check back again).  Youtube has it available for $1.99 an episode. It is available on DVD, for purchase or to borrow through your library.

2023 UPDATE: Manifest was cancelled by NBC after its third season but was immediately picked up by Netflix, with great enthusiasm from its many fans! On June 2, 2023, the fourth and final season begins on Netflix.

Sunday, March 31, 2019

Weekly Inspiration: Stillness and How To Be Alone

I have been trying to catch up on my Quote Journal, where I write down passages I want to remember from the books I read. I've gotten behind and have a stack of books on my coffee table with quotes tabbed and waiting to be transcribed.

One of the reasons for this backlog is a classic book of essays, Gift from the Sea by Anne Morrow Lindbergh. I re-read it last year during Nonfiction November and felt like I was reading it for the first time. So many passages spoke to me and inspired me that my copy of the book (lovingly inscribed to me from an old friend) is filled with dog-eared pages, and I have been slowly copying those favorite passages into my Quote Journal. You can read my review of the book (plus some of those quotes!) on my book blog.

Quiet Sunday mornings when I am up before my husband are one time when I like to work on transcribing quotes into my journal, and one this morning from Gift from the Sea really struck me:
"Now, instead of planting our solitude with our own dream blossoms, we choke the space with continuous music, chatter, and companionship to which we do not even listen. It is simply there to fill the vacuum. When the noise stops, there is no inner music to take its place. We must re-learn to be alone."
          - Gift from the Sea by Anne Morrow Lindbergh

The really amazing thing about this passage is that she wrote it in the 1950's! There were TV, radio, and stereos, but Anne had never heard of Facebook, Twitter, Instagram, podcasts, streaming services, or even e-mail. Most of our modern-day distractions didn't even exist back then, yet Anne still saw a crisis of people filling every possible moment with noise and no longer knowing how to be silent and alone with our thoughts. This is something that strikes me over and over in her book (as I show with a couple of quotes in my review) - how relevant her words, written over 60 years ago, still are today, in a digital world she never could have imagined.

These thoughts brought me back to one of my all-time favorite TED talks, The Art of Stillness by Pico Iyer, which I watched again today (for the third time!). In it, he speaks eloquently about the power of stillness in the world of infinite distractions we now live in:



Ironically, while watching this video, I had constant urges to click to another tab and check social media while listening or go through some of those 100+ unread e-mails waiting in my inbox! With difficulty, I ignored those urges and tried to just concentrate on his meaningful words and soothing voice.

The funny thing is that no one is more experienced in the art of physical stillness than those of us with ME/CFS, for whom even mild exertion can have long-lasting dire consequences. When we feel bad, we are forced to lie in our beds and on our couches and recliners, while the rest of the world moves around us. But, we are just as prone to this absence of emotional stillness in the face of the constant onslaught of media and online distractions. For instance, anytime I am up and about, I have my earbuds in and am listening to audio books or podcasts (ironically, one of my favorite podcasts is the Slow Home Podcast, which advocates stillness!). I spend almost all day on my laptop and frequently check Facebook, Twitter, blogs, and e-mail. Even when I am crashed and stuck on the couch, I still often have my laptop balanced on my belly.

Though I don't practice a weekly digital Sabbath, as Iyer suggests, I have successfully incorporated stillness into my life in some limited ways. I cherish weekday mornings when I am in the house alone and it is completely quiet. No TV, no music, no iPod. Granted, I am still using my laptop but mostly using it to write, with my social media windows closed and no external sounds, except the chimes on my porch and birdsong out my window. That quiet time is rejuvenating. I put my laptop away by 7:30 each evening. This is not entirely still time because my husband and I watch TV and read together but it is at least free of online distractions and a time to just relax and focus on one thing only. And, of course, there is my afternoon nap - a sacred time that I never miss each day in my dark, quiet bedroom (earplugs and eye mask help!). Finally, several times a year, my husband and I go camping with our pop-up camper. The laptop stays home, there is no internet, and I don't own a smart phone. Those weekends or occasional weeks away are a complete respite from the electronic world and even from the distractions that Lindbergh spoke about. It's just the two of us, outdoors in nature (which is itself rejuvenating), with plenty of quiet time - a complete departure from my normal life!

There is definitely room in my life for more stillness, though. I should walk sometimes without the iPod (though I do use only one earbud so I can still hear the sounds of nature, but that's kind of cheating!) and give myself more time away from social media. I could definitely use some quiet stillness just to think, instead of always filling my quiet time with reading or writing or even copying down inspirational quotes!

I love Lindbergh's lyrical line: "...planting our solitude with our own dream blossoms." I think that is a worthy goal for all of us.

How do you find quiet solitude or stillness in your life? How do you escape the constant modern siren call of the digital world?

Tuesday, March 26, 2019

TV Tuesday: Good Trouble

I've written here before about The Fosters, a family drama that began on ABC Family, which is now Freeform. You can read my review at the link - I still love this show and am currently watching the final season 5 on Netflix. It's my ultimate comfort TV (even better than The Gilmore Girls), about a blended family headed by a lesbian couple with a mix of biological, adopted, and foster kids. It's one of those shows where surprising plot twists happen in every episode, and this one family endures so much hardship, but it is also warm and full of love. So, imagine how thrilled I was to discover a Fosters sequel!! While my husband was out of town, I was searching On Demand for something to watch just for me, and saw a new show called Good Trouble that had just posted its first episode. It was about two sisters, just out of college, who move to L.A. and live together. I started to watch the first episode and was shocked to realize the two sisters were Callie and Mariana from The Fosters!

So, in that first episode, Callie, played by Maia Mitchell, and Mariana, played by Cierra Ramirez, are driving a rental truck to L.A. to begin their adult lives. Callie is fresh out of law school, with a job clerking for a judge, and Mariana has just graduated from MIT and is starting a software engineering job at a tech start-up. Mariana has chosen their first post-college digs: a communal living space in the upper floors of an old theater building. It's got lots of character...and lots of characters! I haven't been able to count, but they have lots of company in this cool old space, and Callie and Mariana share a room. Of course, being a spin-off of The Fosters, they run into all sorts of problems right from the first episode. Callie, who has strong liberal views (hey, she grew up in a multi-racial, lesbian-led household), is working for a conservative judge, and her first case is about a police shooting of a black boy...and one of her new roommates is involved in protesting the shooting and is getting close to the boy's mother. For Mariana, her dream job with her sparkling, impressive degree comes with racism and some serious gender bias. Her co-workers are almost all males who treat her like a second-class citizen (and an idiot). And of course, there are sister squabbles and lots of romantic possibilities and hooking up for the two of them.

Just like The Fosters, this show is packed full of crises and issues in every episode, which keeps it interesting, thoughtful, and compelling. Though the actresses playing Callie and Mariana are at the center of the action, the show features a multi-cultural ensemble cast who add in additional crises and issues, and the acting is engaging. Right from that first episode, I was surprised to see how much semi-explicit (but not graphic) sex is included in the show (this is definitely no longer ABC Family) - Callie dates a bisexual man and Mariana gets involved in a threesome in one episode! Though the Fosters' kids were always getting into trouble (including exploring sexuality as teens), this is definitely more of a grown-up nature, which is appropriate for the show's themes and ages. I am loving Good Trouble for all the same reasons I love The Fosters: great cast, good writing, exploring interesting moral dilemmas in every episode, warmth, and just the right touch of humor and lightness. You can watch this new show without watching The Fosters - they explain what backstory you need to know - but why would you? All five seasons of The Fosters is still available on Netflix, so you can begin making your way through those episodes while you wait for each new weekly episode of Good Trouble. And knowing those details just makes Good Trouble all the richer. For fans of The Fosters, Callie and Mariana's siblings and moms often make guest appearances. I am thoroughly enjoying revisiting characters from one of my favorite teen shows as adults and can't wait to see what happens next!

Season 1 of Good Trouble is currently airing on Freeform, so it is available On Demand or at the Freeform website for free (11 episodes have aired so far). You can catch up on The Fosters on Netflix. Good Trouble is also available for $1.99 an episode on Amazon, as are all the seasons of The Fosters.


Monday, March 25, 2019

Movie Monday: Lion

Last month, while my husband was traveling on business, I had a chance to watch a movie I've wanted to see since its 2016 release, Lion. Nominated for 6 Academy Awards (and winner of many other national and international awards), this adaptation of a memoir is moving, powerful, and uplifting.

As the movie opens, little Saroo, played by Sunny Pawar, is five years old, growing up with his mother, older brother, and baby sister in a small village in India. When his brother, Guddu, heads out one night to make money at the local train yard, Saroo begs him to let him come along. Against his better judgement, Guddu agrees and tells Saroo to wait on a bench near the tracks until he comes back because Saroo is so sleepy. Saroo wakes up disoriented and looking for Guddu, so he boards an empty train, calling his brother's name. He falls asleep on the train and wakes the next day to find the train is moving - and still empty. He is stuck on the moving train for days until it finally arrives in Calcutta. Saroo doesn't understand the Bengali language in Calcutta and no one understands him, so he wanders around the far-away city, searching for his family in vain. Eventually, he is adopted by a kind Australian couple, Sue, played by Nicole Kidman, and John, played by David Wenham. He grows up in Australia and has a happy childhood, alongside another Indian boy they adopt. As an adult, Saroo, played by Dev Patel (of Slumdog Millionaire fame), starts having flashbacks from his earliest years. He remembers his mother and his siblings, and viscerally recalls the anguish of being separated from them and of trying to find Guddu. Saroo begins a virtual journey using Google Earth to find his lost family of origin, a task that is made even harder by the fact that his young child memories are not entirely reliable...but he has distinct memories of his family and the tiny town they lived in, and he searches across India, along the train routes, to try to find the town. Saroo becomes obsessed with this impossible quest until it takes over his life.

This is one of those "truth is stranger than fiction" stories that you might think unbelievable if it was made up. It is true, though, and that makes it all the more remarkable. The acting here is excellent, from the tiny, adorable Sunny Pawar playing young Saroo to Dev Patel's gut-wrenching portrayal of an adult tortured by memories of his lost family. And, of course, Kidman is especially good as his loving mother who wants to support him but fears how his search will end. It's an absolutely compelling narrative (hence, its many nominations and awards for adapted screenplay), and the cinematography is jaw-dropping, especially the scenes in India and the contrast between the poverty there and the wealth he is adopted into in Australia. Lion is a poignant, heart-wrenching, and inspiring  story of one man's undeniable drive to find his lost family. It deserved all of its accolades - and more.

Lion is currently available on Netflix or to stream on Amazon, starting at $2.99, or on DVD (only $3.99 through Amazon or at your local library). I don't usually watch movies twice, but this is one I could definitely watch again and again.



    

Sunday, March 24, 2019

Weekly Inspiration: Hope Written Deeply Into Our Hearts

In January, my neighborhood book group read and discussed The Rent Collector by Camron Wright, a wonderful book that was universally loved by our members, a rare occurrence! You can read my review of this moving, uplifting novel based on real-life people at the link. The author wrote the novel based on a stirring documentary, River of Victory, that his son made about a family that lives in Cambodia in the largest garbage dump in Phnom Penh. The real-life husband, wife, and children survived by "picking trash," sifting through the mountains of new trash brought in every day to find small items that could be recycled and thus exchanged for cash. They barely made enough to feed themselves, and their baby son was very sick, but they couldn't afford the treatments that sometimes helped him temporarily.

Based on this true story, the filmmaker's father, Camron Wright, wrote a novel, The Rent Collector, about this family, recreating much of the truth from the documentary but imagining how their lives might change if Sang Ly, the wife and mother, was able to learn how to read. In the novel, she spends hours with a tutor - a one-time enemy who turns out to be a friend - learning to read and how to interpret and appreciate literature. It's a captivating, moving book about life, hope, and the power of books that I highly recommend.

Here are just a few of my many favorite quotes from the novel:
"Life will not always be so hard or so cruel. Our difficulties are but a moment."
This is a Buddhist concept echoed by Sang Ly's grandfather when she is young. Many of the truths of Buddhism resonate with me, with respect to living with chronic illness. When I was first diagnosed, kind notes poured in from my friends, but the one that struck me most and moved me to tears was from an old colleague and close friend who'd had ME/CFS himself for a year during college. He just simply said, "This too shall pass," which made me burst into tears and was very comforting. And he was right. Yes, the illness is still here, 17 years later, but with treatments and lots of emotional coping and adjustment, I have found my new normal. That acute time of such terrible emotional pain did, indeed, pass.

"When you find your purpose - and you will find your purpose - never let go. Peace is a product of both patience and persistence."

"Patience is the best remedy for every trouble."
These two quotes especially struck me because I often counsel others in patience and persistence! I usually say that in terms of finding just the right treatments for each person, but I love this sentiment about finding purpose and peace as well.

"...the desire to believe, to look forward to better days, to want them, to expect them - it seems to be explained in our being. Whether we like it or not, hope is written so deeply into our hearts that we just can't help ourselves, no matter how hard we try otherwise."
Here, Sang Ly's tutor is talking about hope as a theme in literature, and how that applies to real life, as well. I love this quote because I believe strongly in hope and its power. Early on in my illness, I read The Anatomy of Hope by Jerome Groopman, and it had a tremendous impact on me. In fact, I gave my dad a copy of it when he was diagnosed with cancer, and it helped him, too, transforming his normally pessimistic attitude to one of hope, which helped him to not only endure but enjoy his last year of life. Hope is a powerful thing.

Those are just a sampling of the many beautiful passages in this inspiring and compelling novel. My book group also watched the original documentary just this past week and enjoyed that, too.

What books or quotes have you found inspirational?



Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.


          

Tuesday, March 19, 2019

TV Tuesday: The Passage

At my house, we are BIG fans of Justin Cronin's trilogy that begins with The Passage. My husband has finished all three books, and my son and I have read the first two and plan to read the third (I'm thinking Big Book Summer Challenge). So, we were all very excited to hear it was being made into a TV show. My husband and I just finished watching season 1 of The Passage on Fox, and we loved it! It's not exactly like the book in every detail, but it sticks to the basic story and is really well-done. Whether you have read the books or not (though of course, I recommend that you do!), the TV show is riveting and quickly became our favorite show this winter.

Dr, Jonas Lear, played by Henry Ian Cusick, is desperate to find a cure for his wife Elizabeth's early-onset Alzheimer's disease. He and his best friend, a neurologist named Dr. Tim Fanning, played by Jamie McShane, travel to South America when they hear about a man who is immune to disease. What they find, though, is a monster who, when they try to capture him, bites Tim and passes his freaky condition onto the doctor. Now, Jonas has two goals: to cure his wife and his best friend. He establishes a team and gets funding from the DOD to find a way to control this strange virus that transforms its victims into blood-hungry but super-human creatures. When a bird flu pandemic breaks out in Asia, the pressure mounts to find a way to cure it using a version of this virus.

Brad Wolgast, played by Mark-Paul Gosselaar, is one of the FBI agents tasked with traveling around the country to pick up death row inmates with no families who have been chosen for the testing of this modified virus, to try to get the immunities it provides without the drastic side effects. Given the choice between execution or a "drug trial," eleven prisoners choose to travel with Brad and his partner to a secluded research facility in Colorado. When the bird flu worsens, the scientific team gets desperate and concludes that a child would be the perfect host for a virus with just the right characteristics. Brad is sent to pick up Amy Bellafonte, played by Saniyya Sidney, a 10-year old girl whose mother has just died. On the way back to Colorado, though, Brad realizes he can't deliver this innocent child to whatever horrible things are happening in the facility, and the two of them go on the run.

All of that happens in the first episode! I won't ruin the fun with any spoilers because this show is filled with twists and turns in every episode. It's an intriguing plot, and the show has plenty of suspense and fast-paced action, but the relationship between Brad and Amy is at the heart of it and what makes it so compelling. All of the actors do a great job in their roles and are a big part of what makes this show so good, but Gosselaar and Sidney, as Brad and Amy, keep you coming back. Little by little, through season one, you not only see what the scientists are doing but also get flashbacks on who each of the prisoners was before they arrived in Colorado, including what their lives were like and how they ended up in prison. They all develop some telepathic abilities and so begin to interact with the staff, even though they are kept in isolation. Just as in the books, the premise is original, clever, and thought-provoking. We watched the show as soon as it aired each week, On Demand, and it was our favorite of the dozen or so shows we kept up with this winter. Now, we can't wait for season 2!

The Passage has finished its first season, but all episodes are still available free On Demand, on the Fox website (though you might need to sign in with your cable provider's password to view some of the episodes) or on Amazon for $1.99 per episode and $18.99 for the season (so you could watch those episodes available free on the Fox site and buy the other episodes on Amazon, if you don't have cable).

Check out this trailer, then watch the first episode, and you'll be hooked, too:



Monday, March 18, 2019

Movie Monday: The Edge of Seventeen

While my husband was out of town recently, I chose a 2016 high school movie that I knew he wouldn't be interested in watching with me. I love high school TV shows and movies, though, so it was a good choice. The Edge of Seventeen is a sweet, funny story about the travails of being a teenager.

Nadine, played wonderfully by Hailee Steinfeld, wants to be a sarcastic, edgy seventeen-year old, but she is also awkward and self-conscious. Her father died of a sudden heart attack when she was younger, sitting right next to her while driving. He was her greatest admirer and protector, so Nadine feels lost without him. At least she still has Krista, played by Haley Lu Richardson, who has been her best friend (really, her only friend) since they were little girls. The two of them are inseparable...until Krista starts dating Nadine's seemingly perfect, Golden Boy older brother, Darian, played by Blake Jenner. Suddenly, Krista has entry into the world of cool teens that has previously been closed to them, but that leaves Nadine alone and isolated. Things go from bad to worse when Nadine mistakenly sexts her secret crush. The only person Nadine can talk to is her history teacher, Mr. Bruner, played by Woody Harrelson, who seems just as sarcastic and hard-edged as she is, but he helps to ground her when drama threatens to take over and is truly there for her when she really does need him. Will Nadine survive high school?

I really enjoyed this funny, warm movie. The writing is excellent, as is the acting, especially by Steinfeld and Harrelson, as you can see in the clip below. It's an age-old story but very well-done and with a modern edge to it. Despite Nadine's crusty exterior, I was rooting for her not only to survive but to thrive. Nadine does manage to work through many of her problems by the end, though there are plenty of laughs along the way. Maybe people (myself included) enjoy watching the painfully awkward teenage years play out on screen because we are just SO glad to be past all that now! This is a very entertaining look at high school, and just seeing the clip below makes me want to watch the movie again.

The Edge of Seventeen is currently available on Netflix. You can also rent it to stream on Amazon for $3.99 or on DVD.



    

Sunday, March 17, 2019

Weekly Inspiration: Strategies and Tools for Changing Habits

You may have thought about life improvements like eating healthier or improving your sleep habits or even learning something new. Changing habits can be hard, though, and even more challenging when you live with chronic illness and are plagued by pain, exhaustion, and other symptoms. It's not impossible, though! You can still improve your life and change your habits - you just need to think more along the lines of tiny changes and using tools instead of resolutions and willpower (which don't really work for anyone!).

My latest article, Strategies and Tools for Changing Habits, was published on the ProHealth website about a month ago. You can read it there, at the link, or I will reprint the full text below.

What habits would you like to change or improve in your own life?

Reprinted with permission from ProHealth:




Strategies & Tools for Changing Habits

All that January buzz about New Year’s resolutions is dying down now, but you can change habits and improve your life at any time of year. It’s tough when your life is limited by chronic illness to hear all the non-stop talk about major life changes online, on TV, and in magazines at the start of every year. Who can muster up “willpower” when you are stuck on the couch or in constant pain?  

Life improvements and habit change are still possible, though, even with chronic illness. The key is to think in terms of small changes made using tools and strategies, instead of that overwhelming (and frankly, ineffective) concept of willpower. No, we can’t just push through our limits to accomplish things…but guess what? Most healthy people can’t make long-term, sustainable changes that way either!

Whether you want to eat healthier, get to bed earlier, learn to meditate, or learn a new hobby, here are some strategies and tools for changing your habits, one small step at a time:

Think Small!
Tiny steps in the right direction are more effective – and far more doable for those with chronic illness – than wide-sweeping resolutions. Maybe one of your goals is to eat healthier. Instead of trying to make a bunch of changes all at once (and probably soon reverting to old habits), change one small aspect of your diet at a time. Maybe your first step is simply to eat more fruits and vegetables. Once that has become a habit (perhaps in a month or two), then add in another small step, like reducing sugar. Little by little, you will move toward your goal. Baby steps!

Write It Down.
There has been plenty of research on this, and it applies equally well to those with chronic illness. Write out the habits you’d like to change or the goals you want to reach. Don’t stop there, though. I used to write goals every January and then be disappointed every December that I didn’t meet them! Then, I started adding specific objectives under each goal and small, measurable targets for each objective – baby steps, remember? In the example above of wanting to eat healthier, it might look like this:

Goal: To Eat Healthier
Objective #1: Eat more fruits & vegetables
Target 1: Buy frozen fruits & veggies and pre-cut produce to make sure they are always on hand and ready to use.

Target 2: Ask friend/family member for help making a pot of vegetable soup to freeze each weekend so I have easy, healthy meals ready during the week.

Target 3: Make breakfast healthier by adding fruit to oatmeal or smoothies or adding veggies to my eggs.

Objective #2: Reduce added sugar.
Etc.

Both breaking your desired habit changes into tiny, doable steps and writing them down can help to make slow, steady progress, as long as you don’t write them and forget them.  Review objectives and targets at the start of every week, to remind yourself of the target(s) you are currently working on and the bigger picture you are working toward. It also helps to track your progress, perhaps with a simple checklist for each week or, in the example above, writing down how many servings of fruits and vegetables you eat each day.

Get Smart & Learn More.
Expanding your knowledge can help you to change your habits. Maybe you want to meditate every day. A good first step is simply to learn about different kinds of meditation by reading some articles or watching some online videos. This first learning step can help to narrow down your options so you choose things to try that you think might work for you. Remember…baby steps! Start with just 5 minutes a day, testing out different approaches that you learned about.

Link to Existing Habits.
I have found this strategy particularly helpful, to link a new habit I want to adopt to an existing habit that is already a solid part of my routine. For instance, I wanted to do some yoga stretches each day because I always felt better after I did them. The solution was to insert my simple 10-minute yoga floor routine into an existing part of my day. I chose morning because it helps to loosen up stiff muscles, and I inserted the yoga stretches after I shower or get washed up and before I go downstairs for breakfast. It worked! Those yoga stretches are now an integral part of my morning routine. I’ve done the same thing to have more reading time. My husband and I turn off the TV at 9:30 every evening and get ready for bed. Then, we have an hour in bed to read before our lights-out time at 10:30. Now, it’s become a habit, and reading is a part of our evening routine.

Know Yourself.
Knowing yourself can help to set you up for success. In my yoga example, I added yoga to my morning routine because that’s when I feel best. Maybe for you, mornings are difficult but you function better in the afternoon, so you can try to establish a new habit then. Self-help guru Gretchen Rubin, author of The Happiness Project and Better Than Before, talks about lots of different ways to know yourself, like whether you are an abstainer or a moderator. Say you are trying to give up sugar. Will you be more successful with a moderation strategy of having one square of extra-dark chocolate a day? Or would you end up eating the whole bar and are better off just not bringing the chocolate into the house? She has many more examples of ways to know yourself that can help you to make habit changes that fit your needs and will stick.

Keep Trying.
You know the old adage: “If at first you don’t succeed, try, try again!” It’s been around for so long for a reason – it works! The key to long-time success in changing habits is to not give up at the first sign of a challenge. Perhaps you want to get to sleep earlier, and you’ve set yourself a target to turn off the TV and get in bed by 10 pm. You do well the first week, and then you get caught up in a new Netflix show and end up binge-watching past midnight. Oops! Remember it’s only a minor setback. Re-read your targets the next morning and re-dedicate yourself to get back on track. Or maybe you decide your target isn’t quite right for you and needs some tweaking – that’s fine, too. It’s more important to keep trying than to have a quick success.

Establishing new habits that will stick isn’t easy, especially for those living with exhaustion, pain, and limitations, but it is doable, with the right strategies and tools. Forget all that rah-rah noise about New Year’s resolutions – Run a marathon! Write a book! Lose 20 pounds! – and instead focus on small steps you can take today that will help to change your habits for good and bring you closer to meeting your goals. Baby steps!

Suzan Jackson is a freelance writer who has had ME/CFS for 17 years and also has Lyme disease. Both of her sons got ME/CFS 15 years ago, but one is now fully recovered after 10 years of mild illness and the other just graduated from college, with ME/CFS plus three tick-borne infections. Sue writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com You can follow her on Twitter at @livewithmecfs.

Monday, March 11, 2019

Movie Monday: Secret in Their Eyes

It's been a very long time since I've written a Movie Monday post, so the list of movies I've watched but not yet reviewed keeps growing! It's really tough to fit an extra blog post into Monday, since it is already busy with my It's Monday! What Are You Reading? post, plus visiting Monday posts on other blogs, plus setting up goals for the week. But Movie Monday has such nice alliteration...

My husband and I were away this weekend, and the hotel WiFi on my husband's Kindle Fire didn't allow us to connect to our cable network or any of the TV station websites, so instead of catching up on our usual TV shows, we watched a movie on Netflix, Secret in Their Eyes, a unique and intriguing suspense drama with an excellent cast (and in a hilarious twist, I mixed up my bedtime and dinner meds while traveling and could hardly keep my eyes open! But I still enjoyed the movie).

The movie moves back and forth between 2002 and 2015. Just after 9/11, Jessica Cobb, played by Julia Roberts, and Ray Kasten, played by Chiwetel Ejiofor, were working together as part of a counter-terrorism team that combined the FBI and the local Los Angeles District Attorney's office. Claire Sloane, played by Nicole Kidman, was brought in as the new Assistant DA, and Ray immediately developed a crush on her. The team was keeping an eye on a local mosque that was said to include members of a terrorist cell when they got called to the scene of a crime. A body had been found in a dumpster next to the mosque. The team rushed to the scene, only to find a horrifying surprise: the murdered person in the dumpster was Jess' beloved daughter. Thirteen years later, we see that Ray is still obsessed with the crime, staying up late every night to comb through mug shots looking for a potential suspect identified years ago. Claire is now the DA, and Jessica still works as an investigator for the DA, though she looks haggard and haunted. Ray had moved to NYC after the incident thirteen years ago, so this is the first time they've all been together since then. The action moves back and forth between the team investigating the crime originally - and meeting with obstacles - and the present, with Ray telling Claire and Jess he's found the suspect they lost so many years earlier.

This is a dark movie with plenty of suspense and unanswered questions (until the end). As you can probably guess from that cast list, the acting is top-notch, and we were quickly drawn into the lives of the characters. There's not a lot of action (which is fine with me!); it's more of a quiet psychological thriller. The tension builds as it moves from the present to the past and back to the present, and the viewer learns more, bit by bit, about the case and the investigation, with a side plot about the romantic feelings Ray has for Claire. We both enjoyed it. I read that it was based on an earlier Argentinian film by the same name that was even better (in case you speak Spanish), but we thought this American remake was well-done, thoughtful, and engaging.

Secret in Their Eyes was released in theaters in 2015. We watched it on Netflix. It's also available to rent on Amazon for $3.99.



Thursday, March 07, 2019

Listen In on Upcoming Conferences & Speakers

Thanks for your patience during my hiatus in February while I worked on my ME/CFS Treatment book - I finally made some good progress on it and made good use of the time not spent blogging. I am back now and noticed this week a flurry of exciting events coming up that will give ME/CFS patients (and others) a chance to learn about the latest, ground-breaking new research all across the many aspects of our illness. Check out these upcoming events that you can listen in on or watch, either live or after the fact:

Emerge Australia's International Research Symposium on ME/CFS
This year, Emerge Australia is the host of this exciting annual research symposium that brings together ME/CFS researchers from a range of specialties and countries around the world. The event will be held on March 13-15, with two days of scientific/research programs and a third day focused on clinical topics. You can view the full agenda here (though I don't know how the dates/times translate to American or European time zones!). You can watch the symposium live either through Go Live Australia or Facebook Live at their page. Currently, the Go Live Australia link they provided isn't working, so it's best to get updates and new links through the Facebook link or at their website (link there isn't working either, but I'm sure they'll fix it before the conference).

NIH ME/CFS Conference
Spring must be conference season! On the other side of the world, the U.S.'s National Institutes of Health (NIH) will be hosting an ME/CFS Conference on April 4-5. This conference is exciting both for its speakers and presentations, as well as for the mere fact that NIH is hosting it. The speakers include a roster of the expert names we have all come to know (and love) like Rowe, Montoya, and Klimas, as well as a list of researchers who are new to ME/CFS and presenting their work and results to an ME/CFS audience for the first time - this is a much-needed and exciting development. You can check out the conference agenda here, and register for the livestream here. Health Rising's Cort Johnson has an excellent overview of what to expect at the conference.

LDN Radio Show - March & April Programs
This one isn't a conference but an on-going radio show run by the UK's LDN Research Trust. LDN is low-dose naltrexone, a medication used in tiny doses that many of us with ME/CFS, fibro, or tick infections use to help normalize the immune system, with side effects of reducing pain, improving sleep, improving energy, and more. You can read more about our own experiences with LDN, plus resources for more information in this blog post (it is one of a bunch of treatments that have helped my son and I). The radio show airs at 9 pm London time (4 pm EST), and you can listen live or listen (or watch) past shows. All the information for tuning in, plus the upcoming schedule of guests for March and April, is at their website.


There are lots of exciting developments for ME/CFS patients and lots of great ways to stay informed!

Tuesday, March 05, 2019

Celebrate Mardi Gras with Books,TV, Movies & FOOD!

Happy Mardi Gras, ya'll!
Today is Mardi Gras day - we used to live in New Orleans, so this is a major holiday at out house! We had our annual party with a few friends (many of whom also lived in New Orleans when we did) on Saturday, and today, we will finish off the season with our annual tradition of Popeye's at a friend's house.
(NOTE: Saturday, March 2, was also my Illiversary - 17 years since I first got sick with ME/CFS. That date was a difficult one for me in the early years, but I was so busy having fun with friends this weekend that I didn't even notice the date!)
Want to join the fun today? Here is a collection of ways to celebrate Mardi Gras, New Orleans, and Louisiana today...including food, recipes, travel tips, movies & TV shows, and books! You can also check out my latest column in Shelf Awareness published today that features books about and set in New Orleans, Armchair Travel: Destination New Orleans.
Great Adult Books Set In/About Louisiana (additional titles in my article linked above):
Middle-Grade and Teen/YA Books Set In/About Louisiana:
  • Ruined by Paula Morris - a teen/YA mystery/ghost story set in New Orleans (the perfect setting for a ghost story!)
  • The Freedom Maze by Delia Sherman - a compelling middle-grade historical fiction adventure (with a touch of time travel), where a girl from 1960 travels back to 1860 Louisiana
  • Zane and the Hurricane by Rodman Philbrick - a middle-grade novel about Hurricane Katrina - powerful and gripping
  • Out of the Easy by Ruta Sepetys - most people are familiar with her two YA novels set during WWII (Between Shades of Gray and Salt to the Sea), but this historical novel is set in New Orleans in 1950

Movies & TV Shows
  • Chef  - a wonderful, uplifting movie about a family food truck that travels from Miami to LA, with a stop in New Orleans, of course! My favorite movie of the year in 2015.
  • NCIS: New Orleans - though it's a crime show, it includes many scenes of New Orleans, mention of local restaurants and landmarks, and other local tidbits. They usually do a Mardi Gras episode around this time of year, so check your cable On Demand.
  • You can also check out some classic movies and modern classics with New Orleans settings, like A Streetcar Named Desire and The Big Easy.
  • Or tune in to watch parades and other scenes in New Orleans streaming live (or if you missed the parades, some great video clips) at www.mardigras.com.
One of the locals in Louisiana
Travel
All this talk of Louisiana making you want to visit? I have written articles about visiting New Orleans  and Exploring Cajun Country - check them out and start planning your trip (plenty of food recommendations in both!). I'm certainly ready to go back!


Crawfish!
Eat, Drink, and Be Merry!
Notice that many of the books and movies about Louisiana are focused on FOOD? Yes, Louisiana - and especially New Orleans - is known for its amazing, unique food. This blog post on how to celebrate Mardi Gras includes my own recipes for some classic Louisiana dishes, plus food you can grab locally today and webcams where you can vicariously experience Mardi Gras - there are plenty of suggestions in this post that you can still manage to do TODAY! Or save it for tomorrow if you like - we eat this food all year round. 

NOTE that Zapp's potato chips - which you absolutely MUST try) have been bought out by PA-chip maker Utz, so you don't have to get them by mail-order anymore. We can now find them in local stores like Wawa here in Delaware....though we still ordered a carton of assorted flavors for Mardi Gras! (Cajun Crawtator and Cajun Dill are the best)
Me and my sons, about 10 years ago