Book Review: Notes From a Minor Key by Dawn Bailiff

A confession: I read this book more than a year ago, and I fully intended to review it for this blog soon thereafter. I know I had all kinds of specific thoughts I wanted to share, but my memory now offers only general impressions. The perfectionist part of my wants to reread the book just to write a better review, but I'm fighting the urge.

I was extremely interested in this memoir because it is about a professional musician with MS, and it wasn't disappointing in that it painted vivid pictures of both life as a musician and life as an MS patient that I could very much relate to. Here are some of my general impressions of Bailiff's memoir:

1. It is very well written, with some beautiful descriptive passages.
2. Bailiff had some incredible musical experiences with some incredible people.
3. I would have enjoyed this book much more if she had left out the parts about her supposed psychic abilities.
4. Bailiff discusses repression-as-cause-of-MS in a similar vein to Gabor Mate. She takes it further to equate the higher rates of MS in women to a socially inflicted female shame, calling MS a "malady of repression, of anger and frustration turned inward - maybe even of self-hatred." As I've discussed before, I find these theories quite troubling.
5. I dog-eared a page because it is a description of my worst symptom: "There is this creepy, itching sensation all over my body, but when I scratch, I realize that the itch is inside my skin, underneath it somehow, and I can't get to it." Bingo.

Book Review: This is How

I am a big of Augusten Burroughs. I am also a big fan of self-help books, though I probably shouldn't have publicly admitted that. (It's mostly in the same way I really love reading organization blogs. They make me happy and excited while I envision a magical, oh-so-possible world, but my organization skills have yet to move one iota in the right direction. Same with imagining the more effective-productive-happy-assertive-etc self I could so easily become as I read the self help books. I feel happy and excited as I read, but I remain pretty much the same old self.) 

(I'm pretty sure the previous parenthetical rant made me look a little worse, rather than the better I was going for.)

Anyway, Augusten (I've apparently decided that we are on a first-name basis!) has written a whopper of a self-help book. Using his usual witty style, he gives concise and very direct advice to people in all kinds of situations from the very pragmatic (getting a job, losing weight, riding in an elevator, etc.) to the very traumatic (eating disorders, addiction, suicide, grief, etc.) to the deep-metaphysical-profound. He may not appear to be "qualified" to give this kind of advice, but overall I think this is some of the best advice out there for a lot of these issues. Plus, there are moments of comic relief!

The reason for my discussing this book on this MS blog is that one of the chapters is called How to Be Sick, and it's pretty good. The major theme of the chapter is VERY applicable for people with MS and for people with loved ones with MS - worrying about what might come next is always worse than whatever is happening in the present moment.

"Once you're in it, it's okay."

Sure "it" can be pretty awful, but "it" is never as bad as the imagining-it-in-advance part is. So, Augusten suggests adopting a "Pay as You Go" model. "What affects you now is what you deal with now." Don't pay now for what you're going to have to pay for in the future, or what you might never have to pay at all.

"Your disease will inform of what to worry about, when."

I also enjoy his pointing out of the importance of naps and snacks:

"Knowledge is important but naps are more important. The details of treatment are often confusing. Cheese is easy to understand. Eat cheese."

There is actually quite a bit of good meat to this chapter, and I recommend reading it. And the rest of the book. Especially if you are like me and enjoy both Augusten (or other searingly witty autobiographical essayists) and self-help tomes.

Review: Lorenzo's Oil

I just watched Lorenzo's Oil on Netflix. If you haven't seen it, you definitely should! The film is the true story of a family whose son gets ALD, a rare, devastating disease that affects young boys, progressively destructive in every possible way and leading to death. The parents refuse to accept the directions of the medical community (basically that nothing can be done) and insist on learning everything possible about the disease themselves until they ultimately discover and invent a treatment that has been miraculous for many sufferers of the disease.

WATCH THIS MOVIE!!

Reasons MS-ers Should Watch Lorenzo's Oil:

1. It's really good. Fabulous acting. Nick Nolte and Susan Sarandon are great. One scene in particular where Nolte's character sobs in utter anguish and despair in a stairwell is heart-wrenchingly powerful. 

2. ALD destroys Myelin, so this story is of interest to all of us with demyelinating diseases.

3. After discovering/developing/inventing the treatment, the next goal for the family was to find a way to reverse myelin damage, a goal that should be of MAJOR interest to all of us with such damage. The Myelin Project funds significant research in this area, so if you're looking for an organization to support, this would be a good one! The dream of repairing the damage that has been done is a huge one for me, as the chronic pain I live with would not at all be missed and there are so many people out there with disabilities far beyond mine that I so wish could be reversed.

4. The film contains some HUGE lessons on being an empowered patient (and/or empowered parent, caregiver, friend, etc.) on how to respond to illness, how to interact with your disease community, and how to interact with the medical/scientific community. The part of me who as a junior-high through high school age kid that was planning to be a doctor and who loves and is good at science is somewhat inspired to dive into research and find my own cure. (But then the part of me that is always fatigued and that likes the stuff I spend my time on now says, how exactly do you plan to fit the years of studying and intense thought into your life? And then we argue until we forget what we were arguing about.)

So watch this film, check out The Myelin Project and support them if you can, and be an empowered patient!

Book Review: 8 Weeks to Optimum Health

I've long been very intrigued with integrative and/or holistic medicine. It seems like the wisest choice - to consider health and healing from the perspectives of both ancient wisdom and Western knowledge. I particularly appreciate the inclusion of the spiritual and emotional sides of health and how they affect and interact with physical health. That said, I haven't ventured far in this direction in my own healthcare. This is primarily because I am very wary of many so-called practitioners of holistic-type treatments that aren't, to my mind, truly helpful and are just quack money-making endeavors. I would love to have an MD certified in integrative medicine as a primary care provider, but no such doctor exists anywhere near me.

Dr. Andrew Weil is a pioneer in this field and I've been aware of his work for some time and just finally found the time to read his book, 8 Weeks to Optimum Health. Overall I found it a very interesting read. I was pleased to find that many of his suggestions are already a part of my mindset and behaviors. I also found several new tips to add to my life. Certainly, parts of the book I will likely not engage with, but ultimately I think this is a fantastic plan for improving your health in a natural way.

For each of the eight weeks in this plan,  Dr. Weil provides directions in areas of diet, exercise, mental/spiritual health, supplements, and other areas like news fasts, avoiding chemical and energetic toxins, and appreciating art and natural beauty. Among his suggestions I already actively engage in are eating lots of garlic and ginger (currently OBSESSED with ginger tea, especially Twinings Lemon and Chinese Ginger Revive Herbal Tea and Yogi Ginger Herbal Tea Supplement - SOOOOO GOOD!!) and regular use of breathing exercises. New things I will take away include tons of great-sounding recipes, further encouragement to try adding fish to my diet, further encouragement to be more rigorous with my vitamin/supplement routine, being more considerate of energetic toxins, and perhaps trying a few herbal treatments. This final item is one reason I really wish I had in integrative medicine doc to call my own, since I am hesitant to bring up non-traditional things like herbs or any type of CAM treatment to my doctors. I also hate the nuisance that it is to talk to my doc before trying something like this.

The book included several little vignettes of healing, wherein people who have integrated the suggestions in this book into their lives share how they have become healthier in various ways. Included are a few stories of MS patients. One such patients writes: "I now regard the diagnosis of MS as a blessing in disguise. It brought me to a much more spiritual path and reminded me that my task is to be a healer...to myself." Also an MD, this patient ended up studying Ayurvedic medicine and uses meditation, breathing exercises, a mostly vegetarian diet, Qi Gong, regular exercise and the herb ashwagandha in her self-healing endeavors.

I highly recommend this book. To learn more about Dr. Weil and his teachings, visit http://www.drweil.com/.

Book Review: The Power of Music

If you're into music, you should read this book for sure! But this is an MS/pain/health blog, so I won't ramble on and on about the cool stuff in this book that might not excite everyone as much as me. The book doesn't have a major or direct relation to MS, but it does talk about music as a therapeutic tool and has some relevant and interesting points that I wanted to share.

One is just the reminder of music as an agent of healing and the suggestion that we can and should use music to harness the possibilities of neuroplasticity. I know I need to harness the power of music more often...to distract, to change mood, to energize, to relax, and so on. I think music therapy is a very powerful type of CAM that should be more a part of everyone's treatment (and life) plan.

There was also mention of the relatively new field of physchoacoustics and its use in helping relieve pain. Dr. Concetta Tomaino of the Institute for Music and Neurologic Function at Beth Abraham Medical Center in NYC did a pilot study on phsychoacoustics and MS patients with spasticity that had impressive results in reducing the amount and frequency of spasticity. An intriguing field and definitely to keep an eye (or ear?) on.

What are your favorite musical ways to affect how you feel? Do you have a song that energizes or relaxes you when you hear it?

Book Review: Flourish

I recently read Martin Seligman's Flourish. Dr. Seligman is one of the pioneers of Positive Psychology, a discipline that focuses on positive emotions and how to experience more of them. It's not about just putting on a fake smile and forcing yourself to think happy thoughts. Rather, it's a science-based approach to well being. I've read some previous work of Seligman, and the overall subject matter is something I'm very interested in.

This book expands upon previous work in creating what he terms authentic happiness. This book introduces a new theory of well being called PERMA, wherein P stands for positive emotions, E stands for engagement, R stands for positive relationships, M stands for meaning, and A stands for accomplishment. A PERMA-filled life is one not just of happiness, but of flourishing. I love the word flourish, and I think its a great thing to aspire towards.

I got lots of little things out of this book. I love reading about scientific research, and this book has a lot of it described in very accessible ways. (This is not a fluffy, frou-frou self help book. It's very much based in empirical scientific study.) There is also a lot of practical real-life application that left me feeling energized and optimistic.

I'll just mention a few little things I got from the book. First, the idea of "satisficers" as opposed to "maximizers." Satisficers are things that are "good enough" wheras as maximizers are things that are "perfect." For happiness and flourishing, generally satisficing is encouraged over maximizing. This was a big DING DING DING! moment for me. I've talked a bit about my perfectionist ways before, but let's just say that I often have a need for maximizing, even when - sometimes maybe even especially when - true maximizing is impossible, or at least causes significant negative side effects! I've been working on it, but I have a lot more work to do. Satisificing is the end of the world and will ruin everything!!! Satisificing is fine. Satisficing is okay. Satisficing is better. Satisficing is happier.

And a quote:

“Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” – preamble to constitution of the WHO, 1946

Another ding ding ding! moment. I so often focus on the presence of problems in my health, when there is very little I can do to change those things. I should be focusing on everything else, and what I can do to make that better, which will improve the overall state of health and happiness.

Check out authentichappiness.org for more information on authentic happiness, PERMA, and Positive Psychology. The site has tons of questionnaires and surveys and tests that measure things like your strengths, your GRIT, your optimism, your forgiveness and many more, if you're in to that kind of thing.

Book Review: The Pain Chronicles by Melanie Thernstrom

I've been talking about pain quite a bit lately, probably because it is such a major part of my life. I recently read Melanie Thernstrom's The Pain Chronicles, a book I would recommend to anyone who deals with pain or knows someone who does. Thernstrom is a great writer and this is an engaging read. It is part memoir, about her personal experiences with chronic pain, and part research-based academic examination of the subject. There is a lot of information about what chronic pain is, from both scientific and emotional/spiritual points of view. There is also much information about pain treatments and the hows and why of whether or not they work.

Included is information about some disturbing studies about brain atrophy caused by chronic pain: "While normal aging causes gray matter to atrophy by half a percent a year, the gray matter of chronic pain patients atrophies dramatically faster: the pain patients showed losses amounting to between 5 and 11 percent, the equivalent of ten to twenty years of aging."  Um, yikes. Neuropathic pain has an even greater impact on the brain than other types of pain: "The loss in brain density seemed related to pain duration, with 1.3 cubic centimeters of gray matter being lost for every year of chronic pain." Like the author, I "couldn't bear to complete the calculation." Understanding the physical changes in the brain caused by chronic pain reveals the "secret of the chronic pain cycle, why it worsens over time without new nerve or tissue damage: pain causes changes in the brain that diminish the parts of the brain charged with modulating pain, which results in an increase in pain, which further atrophies the brain...and so forth." I think Thernstrom later referenced a more hopeful study suggesting that the decrease in gray matter is a matter of cell shrinkage rather than death, and that some regeneration may be possible if the pain is successfully treated, but I can't find where, so maybe I'm making it up in a desperate attempt to cling to something positive.

the doctor is in!

Beyond pharmaceuticals, some of the most effective means of dealing with pain seem to be in the manipulation of expectation, attention, or both. The expectation of pain causes pain to be worse, a serious issue for those with chronic pain: of course you expect to be in pain when it is a continual presence in your life! But I'm going to work on expecting to feel better, in as much as that is possible. Issues of placebo come into play here. Belief in a treatment can do a lot for how the brain's pain modulating system works. As far as manipulating attention, distraction has long been one of my best tools. When the pain is really bad, I turn to passive attention grabbers like watching tv shows on hulu or listening to music. My favorite form of distraction by far is my niece. Hanging out with her, even just watching her play is the best form of medicine I know. Being out in nature and focusing on the natural beauty all around us is also great distraction.

some great OTC pain relief!

Here is a great quote by pain specialist Dr. John Keltner about the importance of finding experiences what can command your brain's attention in the way that pain does:

"Pain is such a persistent, relentless experience, it actually poisons and infects your brain. Pleasure and relaxation are at a disadvantage compared to pain because, while pain dominates and imprints on consciousness, they are typically quiet, subtle states. People need to find a way to have experiences that are not only pleasurable but are as important and riveting as pain. Religious experiences can be that powerful, but unfortunately, doctors can't prescribe religion. But by whatever technique - sex, intimate conversation, listening to music - people need to create moments when their attention is sufficiently drawn away from pain that they are almost pain-free, so that they can begin to recondition and reclaim their brains." 

This is great advice, and I'm going to work to include more of the things on my personal list in my life. Of course, with MS fatigue thrown into the bag of fun, including lots of the kinds of experiences that are the right kind of riveting for me is easier said than done. This reminds me of  Kate Wolfe-Jenson's "Fill-the-Bucket dates." A great idea for all of us, pain or not.

One treatment Thernstrom discusses that I'm extremely interested in and would love to try is a biofeedback-like f-MRI technique called neuroimaging therapy, which I also mentioned here. It's still in its early stages, but it essentially allows you to train yourself to control your pain to an extent. Unlike distraction, here attention is manipulated by focusing attention on pain, as opposed to focusing it elsewhere. While in the scanner, you see activity in a certain part of your brain represented by a graphic of fire. More pain = more activity = bigger flames. Less pain = less activity = less fire. Thernstrom describes it like a high-tech form of meditation. One of the creators of the technique worried it was just "the world's most expensive placebo" but they were able to determine that the placebo affect is not what is occurring in this case. I really dig the idea of this technique, as it is based in neuroplasticity, something I've read a lot about and find utterly fascinating and just plain cool. I also, of course, love the idea of having control over my pain and without drugs and their stupid side effects. I don't know how widely this is available yet, but I'm going to bring it up at my upcoming appointment with a pain specialist neuro.

Another intriguing tidbit I took away is the effect smell can have on pain. Studies have proven that pleasant smells can serve as analgesics and that unpleasant odors actually enhance pain perception. Bring on the essential oils! And what a great excuse to have a pan of cookies in the oven with great frequency!

Lots of great information in this book, but for me the best part of the read was that feeling of connection.Chronic pain is a very lonely experience, because it's very difficult for others to understand. There were many moments where I felt blown away by how accurately Thernstrom described some of what it feels like to be in pain. And she often describes it in beautiful, lyrical language. At the risk of making this the longest post ever, I would like to share several long quotes that really connected with me. For others with chronic pain, I hope you feel a similar little rush that comes from realizing that other people really get it. For those without, including those who know me in real life but don't know too much about my pain experience, I hope it helps offer a little window into what it's like.

• To be in physical pain is to find yourself in a different realm - a state of being unlike any other, a magic mountain as far removed from the familiar world as a dreamscape. Usually, pain subsides; one wakes from it as from a nightmare, trying to forget it as quickly as possible. But what of pain that persists? The longer it endures, the more excruciating the exile becomes. Will you ever go home? you begin to wonder, home to your normal body, thoughts, life?

• She feels haunted persecuted by an unseen tormentor. Depression sets in. It feels wrong...maddening...delusional. She tries to describe her torment, but others respond with skepticism or contempt.

• As has often been observed, pain never simply "hurts." It insults, puzzles, disturbs, dislocates, devastates. It demands interpretation yet makes nonsense of the answers. Persistent pain has the opaque cruelty of a torturer who seems to taunt us toward imagining there is an answer that would stop the next blow. But whatever we come up with does not suffice.

• You try to wake yourself out of pain - it's not an infinite realm, it's a neurological disease - but you can't. You are in a dreamscape that is familiar yet horribly altered, one in which you are yourself - but not. You want to return to your real self - life and body - but the dream goes on and on. You tell yourself it's only a nightmare - a product of not-yet-fully-understood brain chemistry. But to be in pain is to be unable to awaken: the veil of pain through which you cannot see, the vale of pain in which you have lost your way. To be in pain is to be alone, to imagine that no one else can imagine the world you inhabit.

• Elaine Scarry characterizes pain as not only not a linguistic experience, but as a language-destroying experience. "Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language," she writes.

Being an Empowered Patient

I've been planning for a while to write a short review of a book I recently read, The Empowered Patient, by Elizabeth Cohen. To be completely honest, I didn't read this from cover to cover. This is actually something that is very difficult for me to do. It's one of my few obsessive compulsive tendencies: it pains me to not read books, magazines, even blogs, in their entirety. Cover to cover. But I've come to realize that there is just too much on my reading plate these days. Novels and much nonfiction and certain blogs I will continue to read every last word. But in magazines and certain nonfiction, I just have to browse and skim and take what is truly interesting or relevant to me and let the rest go. It still pains me a bit, but it's necessary if I want the time to read things I truly love, which I do.

So, back to the book. I read several chapters in their entirety and skimmed others. The book didn't necessarily tell me anything I didn't already know, but it was a very helpful reminder in many ways. Additionally, Cohen offered some interesting stories and examples and provided some very useful tips. The main "reminder" Cohen gave me was how to (and why to) be assertive. In many situations, being assertive is very difficult for me. When it comes to my health, I really struggle. I'm not a big fan of doctors, and never really had a positive doctor experience before finding my MS specialist neurologist. He's the first doctor I feel really listens to me, cares about me, remembers important information about me and more. Working with him has been a great experience. I feel comfortable and relaxed with him and I usually have no problem with being  assertive.

General health and other non-MS issues? Not so much. I generally avoid the doctor like the plague. I've never found a general doc I like or that I feel would ultimately benefit my health to see regularly. And with the docs I have seen, I feel anything but empowered and assertive. Cohen offered some specific tips and suggestions for how to get what you need and be assertive with doctors. Her website even offers some worksheets to bring with you to appointments. I'm not sure if I'll use these, but I definitely plan to use some written notes before, during and after my next appointment.

I was inspired to write this post today because of a podcast I listened to earlier today that also inspired me to get more proactive, assertive and empowered about my health. I'm a big fan of Jillian Michaels of Biggest Loser fame and I have been listening to her podcast in the car lately. In a recent episode, she was joined by Dr. Van Herle (the endocrinologist she worked with on Losing It) and something about the knowledge and passion and all the major issues they were discussing just inspired me to get my butt to the doctor! My neuro nags me every visit about finding a primary care physician, and it's been on my to-do list (the place tasks go to die, usually) for ages. Now's the time. Next week, I'm going to make appointments with an internist, a gynecologist, a dentist, and an optometrist! It's time to think big picture with my health. Managing MS is only one piece of the puzzle. My MS has actually made me more grateful for my body than I've ever been. I want and need to take care of it. It's a monumental task, but I'm feeling up for it!

I'm off for a week in Colorado to visit some family. The breathtaking scenery out there is always a huge inspiration as well. I can't wait to get out hiking in the mountains and really put this body to use!

Garden of the Gods  ~ Colorado Springs, CO
CLICK ON THIS PIC TO SEE IT LARGER. YOU WILL NOT REGRET IT!!