Saturday, July 27, 2019

New Diagnoses and New Treatments ME/CFS and Lyme

Our son's struggles with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and tick infections (Lyme disease, bartonella, and babesia) got even more difficult this year, but he is beginning to see some improvements now, thanks to a variety of new treatments.

It's been a long, hot summer here with seemingly never-ending crises in our family, but the biggest one has been the decline of our son's health. When he moved back home in May (he's 25), he was in terrible shape - worse than he's been in years - with a bunch of new symptoms and 40 pounds lighter. We knew he hadn't been doing well lately, but we didn't realize just how bad things had gotten. I took him to an Integrative Health practice that we'd heard good things about from local friends in our support group. The practice includes several different medical professionals, though we have been focused on two of them: a Nurse Practitioner (NP) who specializes in tick-borne infections (but looks at the whole body) and a Functional Medicine Practitioner, also a nurse, who specializes in GI issues and genetics. Both have been helpful so far, and with a bunch of new treatments and changes, our son is slowly improving. We hope to get him back to the point where he can live independently and even support himself; it is a slow journey, but we are seeing progress. Here's a summary of what we have learned and what he is trying, in the hopes that some of this will help others as well.

Brief History and Background
It's always hard to give a "brief" history of our son's illnesses because it is complicated, but here goes. He became ill with ME/CFS in 2004, two years after I did (his younger brother had milder ME/CFS that began at the same time but he is now fully recovered). By spring 2006, he was doing quite well, thanks to treatment for Orthostatic Intolerance and was back to school full-time, back in band, and even playing soccer again.

In April 2007, he had sudden onset of joint pain, plus all of his usual ME/CFS symptoms worsened. He tested positive for Lyme disease (a lucky thing, since the tests only catch about 60% of cases) and was treated for it. The joint pain improved, but he never really got back to that good state he was in the previous year. Over the next three years, his condition gradually worsened. Finally, some strange symptoms - and the help of other parents online - clued us into the culprit, and we took him to an LLMD, a Lyme specialist. He confirmed that our son had two other tick infections, bartonella and babesia, in addition to Lyme. Since the three infections had been present for so many years (and gone mostly untreated), they were dug into his system pretty solidly and were difficult to treat. His immune problems due to ME/CFS made treatment even trickier.

Fast-forward ten years. With treatment for the three tick infections, plus more treatments for ME/CFS, he improved to the point where he was able to start college on time, live on campus, and graduate with an engineering degree. The past ten years had its share of ups and downs, but each time he got worse, we got the bottom of the issues and treated him. This winter, though, he experienced the severe decline that I described. He was living away from home, there was a lot of stress in his personal life, and I had switched him from his usual tick infection treatment protocol (Byron White) to a different one (Zhang), a change I greatly regret now, so his tick infections had gotten worse, with worsening joint pain, fatigue, nausea, and headaches. In addition, he had developed completely new and alarming symptoms, including severe nausea, vomiting, a burning pain in his stomach, and severe anxiety.

The Tests
Our new medical practitioners ordered a slew of tests at his first visit, including:
  • Genova Diagnostics GI Effects 3-day stool testing (our medical team now prefers the Gut Zoomer test from Vibrant Wellness for stool testing).
  • Bartonella testing through Galaxy Diagnostics (well-known as the best bartonella testing lab, though still not 100% accurate)
  • Lyme and babesia testing through Igenex (again, known as the best lab for Lyme testing, though no tests can catch 100% of the infections), plus another babesia test through Medical Diagnostic Labs
  • Special stained blood film test through Fry Labs
  • Tests through regular labs for a wide range of viruses and other infectious agents (including other tick infections)
  • Tests through regular labs for Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), thyroid function, celiac disease (gluten intolerance), vitamin D, homocysteine, hemoglobin
  • A more sensitive follow-up test for celiac when the first one showed some gluten sensitivity.
  • We had already done 23andme genetic testing and sent the results through MTHFRsupport analysis - the genetic specialist looked at that, plus sent our data through another analysis tool.
  • Saliva testing for cortisol and adrenal function (in progress).
  • DNA Connections urine test Lyme panel (recommended but not yet done).

The Diagnoses
Based on all those tests, we went back for a follow-up visit with both practitioners and learned a lot (some we already knew but much of it was new, recent, and surprising):
  • Severe overgrowth of bacteria in GI tract - the GI Effects test showed that he had very high levels of more than a dozen different nasty bacteria strains. The genetic specialist could point to specific bacteria strains and tell us what symptoms they caused, including the burning pain in his stomach, joint pain, and anxiety.
  • Low hydrochloric acid in stomach, which contributes to some of his GI symptoms.
  • Slightly low (low-normal) Total T3 (a measure of thyroid function); other thyroid measures normal.
  • Celiac disease/gluten intolerance (something we never suspected).
  • Low vitamin D3 - astounding since he takes 5000-10000 IU per day, though he wasn't taking all his meds the past few months since he often couldn't hold food or medicines down.
  • Viruses: EBV, CMV, HHV-6 - all previously negative and now present.
  • West Nile Virus - another big surprise.
  • Babesia - negative (confirming our former LLMD's conclusion that he got rid of this one infection).
  • Bartonella - 2 strains present.
  • Lyme - equivocal results but likely, given his history and symptoms.
  • Though babesia is gone, many other unidentified protozoa showed up in the blood smear.
  • Lots of biofilms in his blood (sticky clusters of cells - Lyme bacteria is known to convert to biofilms, which is part of what makes it so hard to treat).
  • Yeast overgrowth (which we already knew about and have been treating). 
  • Genetic results showed he may be an over-methylator.

The Treatments
  •  Nrf2 Activator (a Xymogen product) -  to activate the Nrf2 genetic pathway (per his genetic results - this is one of two genes present in those who don't respond fully to treatment for Lyme disease). This pathway regulates the production of important molecules that impart antioxidant activity, such as glutathione and superoxide dismutase (SOD). It also regulates the production of detoxification enzymes.
  • Resumed A-Bart and started A-L Complex, herbal formulas for bartonella and Lyme, respectively, that are part of the Byron White protocol. He'd previously responded well to A-Bart. He is VERY sensitive to tiny doses of any tick infection treatments, so he is only taking 1-2 drops of each per week so far and having to build back up very slowly.
  • Added CBD Oil, as needed for nausea, vomiting, stomach pain, joint pain, and anxiety - it's been very, very effective for him in controlling these symptoms in the short-term, while we work to eliminate their causes in the longer-term. We are using the Plus CBD Oil brand, which we buy at our local natural foods store and have found to be effective. Sometimes he buys edibles at a local dispensary, and the vape pen was also effective but effects didn't last long (if using vape, ask for solvent-free).
  • Cytomel 5 mcg (Rx) - a tiny dose for his slightly low thyroid T3.
  • OrthoDigestzyme - 1 pill upon waking, gradually working up to 3 per day, before meals - to treat bacteria in GI tract, stomach pain, nausea, vomiting, and lack of appetite. Saw immediate improvement from the first week. 
  • Changed Probiotics - stopped all probiotics he was taking, except saccharomyces boulardii (for yeast) and added UltraFlora Integrity - to treat bacteria in GI tract, stomach pain, nausea, and yeast overgrowth.
  • ATP 360 - 1-3 per day for improved mitochondria function and energy production.
  • P-5-P 25 mg - an active form of vitamin B6 that I was already taking.
  • Mega Mycobalance - 5 capsules 1-3 times a day - for yeast overgrowth 
  • Stopped methylcobalamin (B12) injections - continuing hydroxycobalamin (B12) injections (Rx) every other day only (due to genetic results).
  • Reduced 5-MTHF (20 mg - we buy both 15 mg (at link) and 5 mg) from every day to 3x/week (due to genetic results).
  • Moved Magnesium-l-threonate from afternoon to bedtime (3 pills) to help sleep. 
  • Switched from acetyl-l-carnitine to Carnitine Synergy, a product that includes both acetyl-l-carnitine and carnitine.
  • Eliminate gluten from diet.
  • Rinse with Biocidin after brushing teeth - to help with certain oral bacteria found in his GI testing. 
  • Eat 2 Tablespoons of navy beans twice a week to help with Collinsella bacteria.
Results So Far
  • Stomach pain, nausea, loss of appetite are all greatly reduced and vomiting is now rare. He can eat again, hold down his food, and is beginning to gain back some weight.
  • He's working as a waiter 2-4 nights a week.
  • Anxiety is reduced, though still an issue.
  • His average daily rating of how he feels (on a scale of 1 to 5, where 1 is good and 5 is incapacitated) has improved from a low of 3.3 to 2.8.
  • His % of time crashed (at a 4 or 5) each month has improved from 42% to 19%.
  • He's had the energy to enjoy time with friends or his girlfriend several times a week.

So, he is doing better, improving slowly but surely. He is continuing to work on diet and increasing the dose of the new supplements listed above. He has more testing to do (the saliva test and the follow-up GI testing through Ubiome), and follow-up appointments at the end of August. All these new supplements on top of the many pills we already take are a lot to keep track of, but we're helping him to juggle it all.

Now you see why I haven't had as much time for blogging or social media this summer! This crisis was frightening for all of us, and he really hit bottom by May, but we are hopeful that he will continue to improve. His goal is to make use of that engineering degree and get a full-time job so he can support himself.

I recognize that his particular set of problems is both unique and complex, but I thought that elements of what he's been dealing with would be helpful to others. In particular, I highly recommend the GI Effects testing kit from Genova Diagnostics - we learned so much surprising information from that.

UPDATE 4-11-23: Shortly after I wrote this, the Genova test became temporarily unavailable (though it looks like it might be available again now). Our medical team now uses the Gut Zoomer test from Vibrant Wellness, which my son recently took again to see how he's doing. I also used the Gut Zoomer test two years ago when I developed chronic diarrhea.

With the help of this test and treatments recommended from our functional medicine specialist, my GI function is now back to normal.

Another finding from this and later tests was that my son is severely gluten intolerant (perhaps even has celiac disease). Eliminating gluten from his diet led to further, giant improvements, not only in his GI symptoms but in energy and overall well-being. He is so much better now that he recently started his first-ever full-time job in his professional field (he is 28 and got ME/CFS at age 10). A large part of his improvement came from finding and treating GI problems, since a large part of the immune system is in the GI tract.

Have you dealt with any similar problems? Or found some effective solutions to some of these problems? Please share your experiences in the comments below.

Sunday, July 21, 2019

Weekly Inspiration: Listen to Podcasts

This morning, I was half-listening to Good Morning, America (Sunday Today was pre-empted by the golf tournament) while I did my yoga stretches, and I heard a piece on stress. The interviewee mentioned a podcast called Ten Percent Happier, so I was intrigued and looked it up. It's a podcast all about meditating, which features different kinds of meditation, as well as interviews with various celebrities (including the Dalai Lama!). It looks pretty good, so I will probably give it a try. This led to my deciding to devote today's Weekly Inspiration to podcasts.

I love listening to podcasts and split my audio time between a wide variety of podcasts and audiobooks, while doing things around the house, driving, walking, even brushing my teeth! I am probably a bit too plugged in, but if you haven't yet discovered podcasts, they're a great way to find inspiration and improve your life (or just entertain yourself). Here are a few of my favorites:

Inspiration & Improvement

Happier with Gretchen Rubin - this light, fun podcast comes from the acclaimed self-help author of The Happiness Project, Better Than Before, The Four Tendencies, and other books. She and her sister, Elizabeth (see below) chat about how to make your life happier. Their show is upbeat and insightful and includes regular features like Happiness Hacks and Listener Questions, as well as interesting and engaging discussions between the two sisters and with guests. I've been listening to this one for years and really enjoy it.

Happier in Hollywood is a spin-off podcast that Gretchen's sister, Liz Craft, hosts with her writing partner and best friend, Sarah Fain. The two of them are successful TV writers living in the L.A. area, so while their episodes are also focused on happiness, it is with a Hollywood spin. You don't have to live or work in Hollywood to enjoy the show, though. It does have more of a work focus to it, but the pair also discuss happiness at home, personal fulfillment, and mental and physical health.

The Slow Home Podcast is a newer one for me, just discovered this winter, but I am enjoying it already. The hosts are a husband and wife who live in Australia, and their tagline is "Slow living for a fast world." They talk about ways to slow down your life (something we all know about!), focus in on your self and your family and whatever is most important to you, and tune out all the noise in the fast-paced world we live in. I like that they are very open and honest about what brought them to this point, including extreme stress, unhappiness, and serious depression. Their episodes are also quiet and soothing to listen to.

The Rich Roll Podcast is one that I don't listen to regularly, but I have enjoyed a few of his episodes. I guess he is someone famous - used to be a professional athlete? - but I was unfamiliar with him. His focus is on wellness, spirituality, and other inspirational and improvement topics, and his episodes are lengthy interviews (or conversations, as he says) with various people, some celebrities and some lesser-known, on a wide variety of topics. I've enjoyed the episodes I've listened to, and they are always thoughtful and thought-provoking.

By the Book is a cross between inspiration, self-improvement, and entertainment that I enjoy. The hosts are two friends, Jolenta Greenburg and Kristen Meinzer. In each episode, they choose a different self-help book, live by it for two weeks, and report back. Along the way, they break down the elements of the book for listeners and recap their own experiences, as well as provide an epilogue on what (if anything) from the book stuck. They have covered everything from The Five Love Languages to The Life-Changing Magic of Tidying Up to Meditation for Fidgety Skeptics. The two women are super-honest and open, leading to some fascinating insights and conversations. The podcast is also very entertaining and enjoyable to listen to.

Balanced Bites Podcast is all about healthy eating. Its two co-hosts, Diana and Liz, are both nutrition experts. They are not focused on diets or weight loss but on eating well for a healthy life, something that those of us with chronic illness certainly need. I've only listened to a few episodes, but they seem to focus somewhat on Paleo and Keto type diets, but they also talk about topics like emotional eating and a wide range of health problems, like thyroid conditions and how food affects cortisol levels - again, all stuff that's relevant to us. looks like they may have stopped creating new episodes in May (since the most recent one is called "The Last Episode"!), but they have a huge archive of interesting and informative episodes.

Books Podcasts
If you read my blog regularly, you know that I love to read, so some of my top favorite podcasts are about books and reading. Here are my current top 3 for those that love books: 
  • Book Cougars - "two middle-aged women on the hunt for a good read." Co-hosts Chris and Emily are friends of mine, and I love listening to their fun podcast. They recount what they've been reading, literary adventures (like local author signings), and more. Sometimes, it's just the two of them - good friends talking about books - and sometimes they have guests on the podcast or interview authors.
  • What Should I Read Next? - hosted by Anne Bogel, who writes the book blog, The Modern Mrs. Darcy. On each episode, she has a guest - usually a regular reader like you or me, sometimes someone well-known - who tells her three books they love and one book they hate, then Anne chooses some books that they might enjoy reading next. Fun, interesting, and guaranteed to give you some great ideas for your next book to read!
  • But That's Another Story is hosted by the fabulous Will Schwalbe, author of The End of Your Life Book Club and Books for Living. This is a quieter, more reflective book podcast that is great for those who are sensitive to noise or have shorter attention spans. Episodes are usually shorter, featuring a celebrity talking about a book that changed his or her life, and Will's voice is soothing. He's a great guy, and I love listening to this fascinating podcast.

Just for Fun

I listen to some podcasts just for fun and entertainment. Here are three of my favorites:
  • Pop Culture Happy Hour - two episodes a week from a group of NPR pop culture experts on the latest and best in TV, movies, books, and music - a great source for new things to watch, read, or listen to! This is one of my favorite podcasts, and I listen to the episodes each week while I refill medicine boxes for my son and I.
  • Ask Me Another - a hilarious and quirky quiz/puzzle/game show. It's pure entertainment, with celebrity guests, plus regular contestants all competing in strange, sometimes musical, and always funny contests. Lots of laughs and lots of fun - my family laughs at me for yelling out answers while I'm listening in my earbuds (though they enjoy listening with me in the car).
  • Wait, Wait, Don't Tell Me is an old favorite in our house and my family's first choice for car rides! It's a quiz show based on the weekly news, with a focus on the hilarious, bizarre, and strange. Host Peter Sagal leads a panel of three comedians in exploring the week's weirdest news and interviews a celebrity guest each week. It's timely, fun to play along with, and very funny.

You may have noticed that I don't listen to any podcasts that are focused on chronic illness or specifically ME/CFS. I have a few episodes here and there downloaded that I haven't gotten to yet.

So, I would love to hear about YOUR favorite podcasts! Whether on illness and health, inspiration, or just for fun, please leave me a comment and tell me which podcasts you enjoy listening to!

Monday, July 15, 2019

Movie Monday: The Widows

Last weekend, my husband and I were too worn out to go out to the theater, so we grabbed a DVD from Redbox to watch at home. We finally had a chance to see Widows, a 2018 award-winning movie that is sort of like a darker, grittier, more realistic Ocean's 8, about a group of widows who take on their criminal husbands' last job to pay off debts.

Veronica, played by Viola Davis, is married to criminal Harry, played by Liam Neeson, but she chooses not to confront where their money and luxurious way of living come from. When Harry and his entire crew are killed by the police (and their vehicle blown up and destroyed) in a robbery gone wrong, Veronica is bereft and shocked. Those emotions turn to terror when she is visited by Jamal Manning, played by Brian Tyree Henry, the head of a Chicago crime ring who says that Harry owes him millions from this botched job, and that Veronica has just a few days to pay off that debt. Veronica finds notes left by Harry that describe his next job in detail, and she decides to pull together the other widows from the crew since they are all in danger and have no money. Linda, played by Michelle Rodriguez, has two kids and lost her dress shop when her husband was killed. Alice, played by Elizabeth Debicki, isn't too upset about the loss of her abusive boyfriend but has to turn to working for an escort service to support herself. Finally, they add Belle, played by Cynthia Erivo, to their group. The four of them prepare for this intricate and dangerous robbery that Harry had planned. Meanwhile, there is a corrupt political battle going on that is inextricably tangled up in the criminal world and their husbands' past lives.

As you can probably tell, it's a complex story but that just makes it all the more compelling, as you root for these formerly helpless women to come out on top. This action-packed and suspenseful crime thriller has lots of unexpected twists as the plot moves forward. I compared Widows in my opening with Ocean's 8, but it's only the plot - a group of women pulling off a complicated caper - that is similar. The tone is entirely different. These women are not having fun; they are fighting for their lives, their families, and their livelihoods. The setting in Chicago is gritty and dark. It's exciting to watch these women step up to the challenge and become strong, kick-ass heroines of their own stories. The ensemble cast is superb - both the women and the supporting men, who include Robert Duvall and Colin Farrell as father-son politicians - with strong performances all around. Of course, Viola Davis has a chance to employ her ugly crying - no one does it like her! All in all, we both enjoyed this dark, gripping drama about women taking their futures into their own hands.

Widows (2018) is available for streaming on Amazon. It is also available on DVD, and we rented it through Redbox.


Wednesday, July 10, 2019

Excellent New ME/CFS Article for Sharing with Doctors

The well-respected Dr. Anthony Komaroff of Brigham and Women's Hospital in Boston has just published an excellent article on ME/CFS in the very prestigious and high-profile Journal of the American Medical Association (JAMA) that will hopefully help to educate doctors around the world and bring some much-needed attention to our neglected disease. You can read and print the article here (it is short).

Komaroff provides a succinct, science-based summary of our disease, referencing the latest research and the recent NIH Conference. He covers the latest findings in the nervous system, immune system, and metabolics of ME/CFS patients in a brief but powerful summary and wraps it up with some theories of overall illness models. 
He does get one thing wrong, which is a bit irritating. He says that ME/CFS was first described in the 1980's, but that's the U.S.'s Center for Disease Control's revisionist history, as they renamed the disease (with that much-loved moniker CFS) in the 1980's. But, historically, cluster outbreaks (where many people in a small geographical area suddenly become ill with ME/CFS) were described and recorded as early as the 1930’s in Europe and the U.S. A British outbreak at the Royal Free Hospital in 1955 led to the name ME (Myalgic Encephalomyelitis). However, that's my only quibble - the rest of the article is stellar and will be very useful.
In fact, this brief summary is perfect for sharing with doubting doctors! 
I am definitely printing it to share with two new medical professionals we are seeing who "don't get" ME/CFS and also with our wonderful primary care physician who was the first to accurately diagnose me 17+ years ago, just as an update. The author's excellent reputation, the status of the hospital where he works, and the very high prestige of the journal make this a (hopefully) very impactful article.

Print and share with your doctors at your next appointments!

Tuesday, July 09, 2019

TV Tuesday: Imposters

Last year, my husband and I discovered the first season of the Bravo show Imposters on Netflix, and we loved it! We have been anxiously awaiting season 2, which is now on Netflix. I love this show so much that I am doling out its episodes slowly, not wanting it to end! It's a twisty, funny, original show with a great premise.

In the first episode of season one, a kind man named Ezra Bloom, played by Rob Heaps, discovers that his new wife, played by Inbar Lavi, has left him, cleaned out all his money, and threatened blackmail against his family if he goes to the police. Poof, she's gone. Ezra is understandably devastated...and confused. Then, a guy named Richard Evans, played by Parker Young, shows up at his door and explains that the same woman pulled the same con on him, pretending to be someone else and looking different. They compare stories and photos, and sure enough, that's her. They decide to track her down to get their money back (and perhaps some of their dignity, too) and follow her out to the West Coast, where they discover a woman named Jules, played by Marianne Rendón...who was also married to this same woman and conned in the same way. Now, the three of them team up to bring her down. They find her currently working on yet another victim and come up with a convoluted scheme (involving them pretending to be other people) to get revenge and reimbursement.

That's all I will say about the plot because half the fun of this darkly comic show is its unexpected surprises around every corner. With everyone pretending to be someone else, the opportunities for  humor and suspense abound. There is real emotion here and real warmth - Ezra, Richie, and Jules were all seriously hurt and bond over that - but most of all, this show is just pure fun! All of the acting is excellent, from the lesser-known main characters (and especially Inbar Lavi in the lead as so many different characters) and also from some seasoned veterans in supporting roles, including Brian Benben (whom we saw most recently as Dr. Sheldon Wallace on Private Practice), Katherine LaNasa, who you will recognize from a bunch of shows and movies through the decades, and even Uma Thurman, as a scary enforcer. All in all, Imposters is one of our favorite TV shows. It has everything - suspense, lots of twists and turns to keep it fresh, dark humor, and heart.

The first two seasons of Imposters are now available on Netflix. I just realized we have just one more episode left of the 10-episode second season - oh, no! Even worse, I see that Bravo has cancelled the show and has no plans for a third season. I hope that some other network will recognize how great this show is and pick it up. In the meantime, enjoy the first two seasons - you won't regret it - it's so much fun!

Sunday, July 07, 2019

Weekly Inspiration: Grace, Solitude, and Limits

My husband and I are both feeling exhausted and burned out (and maybe a bit depressed). We are embodying the term "sandwich generation," and lately, stretched thin between caring for - and worrying about - both his dad (who is 94), who was recently hospitalized, and our oldest son, whose ME/CFS and tick infections, plus new problems, have been out of control and much worse the past six months. It's a lot of stress, and while my own illness is normally fairly well-controlled with treatments, lately I am back to waking up still worn out and lacking in energy all day.

I am definitely in need of some inspiration, and this morning, paging through my Quote Journal, I was reminded of how much brilliance, thoughtfulness, and inspiration are crammed into the brief classic, Gift from the Sea by Anne Morrow Lindbergh (yes, she was married to Charles). A good friend from high school gave me this book decades ago, shortly after we both graduated from college, and I enjoyed it back then. When I re-read it last fall, though, in the midst of a severe relapse, Lindbergh's insightful words really resonated with me, as I think is natural given that when she wrote it, she was a wife and mother and writer like me, balancing multiple roles. I think she has something for everyone, though.

The basis for her book of essays is that she took a break from her busy life to write. She traveled to a remote spot on Captiva Island in Florida, stayed in a small cottage, and spent some time completely alone on the beach (my dream!). The contrast to her usually crammed-full life inspired thoughtful and powerful essays about the meaning of life. The amazing part is that she wrote this book in the early 50's (it was first published in 1955), but her words are startlingly relevant to our lives today, even with technology she never could have dreamed of! I wrote here once before about her book and one particular quote about solitude in Weekly Inspiration: Stillness and How to Be Alone, but today I'd like to share more of her insightful quotes with you...and of course, I highly recommend you read the book! It's a brief but powerful one. My own copy is filled with dog-eared pages that translated to a dozen pages in my Quote Journal. Here are some of my favorites:
"But I want first of all - in fact, as an end to these other desires - to be at peace with myself. I want a singleness of eye, a purity of intention, a central core to my life that will enable me to carry out these obligations and activities as well as I can. I want, in fact - to borrow from the language of the saints - to live "in grace" as much of the time as possible. ...By grace, I mean an inner harmony, essentially spiritual, which can be translated into outward harmony. I am seeking perhaps what Socrates asked for in the prayer from the Phaedus when he said, "May the outward and inward man be at one."

This passage is beautifully written and expresses a universal desire. Isn't this what everyone wants out of life? Grace, harmony, and for our inner and outer worlds to be in sync. That sounds like a very peaceful way to live, doesn't it? I think I have somewhat attained this goal, though I am often feeling pulled in too many different directions.  Certainly, chronic illness encourages you to live outwardly according to your inner core because it just takes too much energy to put up a false front!

Here's another of my favorites that resonates with me now very strongly:
"If one is out of touch with oneself, then one cannot touch others... Only when one is connected to one's own core is one connected to others, I am beginning to discover. And, for me, the core, the inner spring, can best be refound through solitude."

For me, this applies not only to my immediate situation, as I try to take care of family members, but also to my life more generally. Chronic illness for me has led to a life connecting to and trying to help others, through the local support group I run and the online groups I both run and participate in. Being able to reach out and help others is for me the silver lining in a life of chronic illness, so her words feel like a gentle warning that if I don't take care of myself, then I can't reach out to others...including my own family members. And that last line feels like my personal credo this days. I desire and yearn for solitude lately. My husband and son went golfing Friday while my other son was away, and it was such a thrill to have a few hours to myself! I wrote recently, in an article for ProHealth, about my need for solitude and the question, Has Chronic Illness Turned Me Into an Introvert? But reading this quote, I think it's more than that. I think Lindbergh was right, and solitude is necessary for recharging, for harmony, and for staying connected to my core.
"My life in Connecticut, I begin to realize, lacks this quality of significance and therefore of beauty, because there is so little empty space. The space is scribbled on; the time has been filled. There are so few empty pages in my engagement pad, or empty hours in the day, or empty rooms in my life in which to stand alone and find myself. Too many activities, and people, and things. Too many worthy activities, valuable things, and interesting people. For it is not merely the trivial which clutters our lives but the important as well."

Yes! This is my life and probably that of everyone else in today's world, too. Everything feels filled up, with no empty space, and it all feels too important to let anything drop. The ironic thing today is that even if you are housebound or bedridden, it is likely that this passage is still relevant to you because there is just so much stuff in our world today to fill our time, things that Lindbergh never dreamed of. It is easy, even if you never leave your house, to still fill every minute - with TV and movies and music and podcasts and books and social media and ...just so much content and so little time! I certainly feel that way and tend to not only fill every minute but double-fill it, listening to a podcast or audio book while I do laundry or take a walk. Empty space is seriously lacking in my life.

Finally, Lindbergh writes about how this lack of empty space plays out in the realm of relationships. This is one of many passages in the book where it's amazing that she is talking about the 1950's. Just think how much more full our lives are today, how many more inputs, resources, and information are coming at us so much faster.
"We are asked today to feel compassionately for everyone in the world; to digest intellectually all the information spread out in public print, and to implement in action every ethical impulse aroused by our hearts and minds. The inter-relatedness of the world links us constantly with more people than our hearts can hold. Or rather - for I believe the heart is infinite - modern communication loads us with more problems than the human frame can carry. It is good, I think, for our hearts, our minds, our imaginations to be stretched; but body, nerve, endurance, and life-span are not as elastic. My life cannot implement in action the demands of all the people to whom my heart responds."

I should write that last line on my forehead! This passage so perfectly captures what is probably the #1 problem in my life. I want to help everyone, but my body doesn't have that capacity. I think this also applies to what is going on in the wider world. Even if we rarely leave our homes, we are inundated with horrifying news stories about suffering children, the destructive effects of climate change, increasingly hostile politics, and more. It's almost heartening to read these words from Lindbergh - a perfectly healthy woman in the 1950's, many decades before the internet - and to understand that she, too, was limited. So, if she couldn't do everything, how on earth could I possibly, with the limitations of my illness and the expansion of our digital lives? And yet, that is exactly what I try every single week - to do everything, to help everyone. I need to give some serious thought to this idea that it is impossible, and I am only making myself feel inadequate and stretched too thin by continuing to try.

Lots to think about in this week's post - I think I wrote it as much for myself as I did for readers of my blog! Now, if only I could somehow finangle a couple of weeks alone at the beach...

But I would love to hear YOUR thoughts. Which of these quotes (or some other from another source) resonates most with you? What are your feelings about grace, solitude, and our limits? Please share your comments below.

A 50th anniversary edition of Gift from the Sea is available from Amazon, and you can listen to a sample of the audio, which features a fascinating introduction by the author's daughter.


Or you can order Gift From the Sea from Book Depository, with free shipping worldwide.

Monday, July 01, 2019

Movie Monday: Yesterday

After laughing through the trailers on TV the past few weeks, my husband and I went out to see Yesterday this weekend, as soon as it hit theaters, and it lived up to our expectations. This warm, funny, musical movie was fun and uplifting.

Jack Malik, played by Himesh Patel, is a struggling musician...really struggling. He plays small venues where his friends make up most of the audience and writes his own songs, but after years of working, he hasn't seemed to make any progress. His manager and old friend, Ellie, played by Lily James, keeps encouraging him, but one night, after yet another performance with almost no audience, he decides to quit. Riding his bicycle home, there is a sudden black-out, all over the world, and Jack gets hit by a bus. When he wakes up in the hospital - battered and bruised and missing his front teeth - Ellie is by his side. Over the next few days, he begins to notice that his friends don't understand his references to Beatle's songs, and when he sings Yesterday for them on the new guitar Ellie gave him, they are stunned by the song and thinks he wrote it. Many trips to Google confirm that he is now living in a world where no one - except him - has ever heard of the Beatles or knows any of their songs. He begins playing the songs and quickly gains attention, including from Ed Sheeran, playing himself. Bringing his friend Rocky, played by Joel Fry, along as his roadie, Jack quickly rises and gains fame. A Hollywood agent named Debra, played hilariously over-the-top by Kate McKinnon, takes him under his wing and quickly makes him famous, but Jack has doubts - about lying about writing the songs and about the role that Ellie plays in his life.

We thoroughly enjoyed every moment of this unique movie that combines a musical with a romcom and adds a dash of sci fi. It's just plain fun, from beginning to end, and the very definition of a feel-good movie. Of course, the music is great, and it's fun to watch Jack to try remember all the lyrics to all the songs. It is also very, very funny, with plenty of laughs packed in from all the characters, including Jack's parents who really don't understand his newfound fame. Patel, a British actor who I'd never heard of before, is excellent in the lead role, juggling drama, awkward romance, humor, and music adeptly. I have noticed that many (most?) movie critics have been less-than-impressed with this movie and been - well, critical, but all of the regular people (i.e. my friends!) who have seen it have enjoyed it as much as we have. So, to the critics, I say...relax! Just chill out, sit back, and go along for the ride. I think this is the perfect summer movie - poignant, very funny, great music, and with a clever premise. We walked out of the theater smiling and singing (and spent the next few days trying to remember all the Beatles' lyrics!). In fact, I'd like to watch it again just to experience that pure entertainment joy.

Check out the trailer to see for yourself:

Yesterday is currently in theaters. You can purchase tickets (including for recliner theaters, like we did!) through Fandango:

Find tickets and showtimes on Fandango.