Learn Something! / Other / Tips & Tricks for Illness Management

“The Moonlight Sonata at the Mayo Clinic”

Did you know I am an avid reader? I’ve been escaping into dystopian and sci-fi type novels, but suddenly I was in the mood for a book with a chronically ill protagonist. I’ve been in a bit of a funk and I thought a narrator who voices my thoughts, who lives life the way I do (rather than protagonists who take down evil leaders of dystopian societies with their seemingly boundless energy, good health, and endurance), would be comforting. I looked through lists on Goodreads and didn’t find a book quite fitting my mood. Through dumb luck, I came across a book called The Moonlight Sonata at the Mayo Clinic by Nora Gallagher on my library’s website for physical books (versus e-book versions) which I rarely visit. I read the synopsis of the memoir – a woman with a mystery illness goes to doctor after doctor looking for answers (!!) — read a few reviews, read the first few preview pages, and promptly became unsure if I would survive standing by for a physical copy of this book. An executive decision was made; the Kindle version of this book was worth my precious “treat yo self” birthday money. I do not take purchasing a book rather than using the library lightly.

Her descriptions so far are perfect. I had to stop reading, plug in my Kindle, and load the marked excerpts here to share with everyone. Given what a day I have had, this amount of effort is telling of how profound I found these excerpts.

I dropped out of the world I lived in, where I thought I knew about disease and vulnerability and death and all that, and entered another country. It was a spookily familiar world, same streets, same buildings, same people—a sci-fi version of my streets, my buildings, my people—but it was as if the furniture were slightly rearranged, the people not quite right. It was not like another place; it was another country. It was like falling into Oz. I walked right over the border without knowing I was crossing it. It had no border patrol. I did no planning. I had no map. Dr. Lowe handed me the passport. I had it in my hands before I knew what it was.

When I read the above, I actually said, “Yes!” Everything is just as it always was, but it is all slightly skewed and different. I totally recognize this life I am living as my own… yet it is still unfamiliar after all these years of illness.

I crossed Bath Street, parallel to Santa Barbara’s hospital, and headed toward Castillo Street. I was careful to use the crosswalk. I felt the nearness of my own life, its centrality, its concreteness. Even then, early in my sojourn, in what I hoped was only a visit, not my destination, what was brought home to me was that I had taken my life for granted. A group of doctors in white coats was coming toward me, one eating a sandwich, another carrying a folder; a middle-aged woman was talking on her cell phone—all of them just walking dully along as if their lives were not fragile. As if their lives were balloons … not a huge raft that had to be lugged along the sidewalk, a large body not possible to ignore because it … had … something … wrong … with … it. The raft is me. I am it. They are all walking around, nurses, doctors, visitors, on this block, and all over the world, as if their bodies were clothes or whatever, … They are—here is the right word—oblivious.

When you become ill, you notice aspects of life healthy people do not think about. People stand and talk as long as they’d like, not once squatting down during the conversation or glancing around desperately for a chair. People eat huge meals, stuffing themselves to the point of uncomfortable fullness, but afterwards, there is no fainting due to the extra blood our stomachs require after eating and there is no doubt their stomach will digest said food. People are busy, busy, busy all day long on a Saturday, not even realizing how astounding it is they will wake up the next day fairly reinvigorated, and by Monday, it’ll be like it never happened.

I had been there, not knowing that this was my creed, until ten minutes ago. The sick? Not me. The dying? Never. I had thought I knew. I’d had the flu. I’d had a cold. But these were not enough to dump me into Oz. Because I knew that eventually I’d get well. My time in the land of the sick had always been so short, it was like a layover. I saw Thailand but only from the airport. To pass into this place, you have to not know whether you are going to get out.

Comforting doesn’t even begin to describe how it feels to have a perfect stranger articulately voice thoughts I’ve had so often myself. It immediately cheered me up. I hope my sharing these excerpts provides someone else with this feeling of connection and validation, or maybe if you aren’t sick, it will provide insight.

Since originally writing this post, I have finished the book. I still love it. I found the author’s journey to identify the “mystery disease” absolutely riveting because I could relate to so many of the hoops she had to jump through. Would I have found it riveting if I wasn’t going through something similar? I can’t answer since I don’t know what that feels like! The narrative wasn’t all doom and gloom, but it wasn’t all sunshine and butterflies either; it was real. I found the parts of the book devoted to history of religion a bit confusing at first, but they do get tied in beautifully. As someone who wouldn’t call herself religious, I didn’t find the parts about religion off-putting or difficult to relate to.

I would definitely recommend this book if the subject matter is of interest to the reader!

Here are the Goodreads, Amazon, and author pages for the book.

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19 thoughts on ““The Moonlight Sonata at the Mayo Clinic”

  1. Ok, so I have no idea why this just made me cry but it did. Maybe because I’m forever thinking how lucky healthy people are, like you said, noone stops to think all we take for granted on a daily basis. Maybe because just yesterday I was praying that I could clean my house without feeling faint and with a racing heart. This post just really touched me. Thank you for always sharing with us Jackie!

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    • Maybe it made you cry due to a combo of the writing providing validation of your feelings and, while that validation and identification is magical, you’d rather her words be a story — not something you can relate to perfectly! I think a good cry and a “why me” moment does a world of good for the psyche. It is neat to hear her descriptions had a big impact on someone else too — happy I shared it!

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    • 😊 I hope you enjoy it! I am finding she explores religion quite a bit in a non-preachy way. It was a big part of her life before (she wrote books about it) and becoming sick caused her to grapple with her beliefs.

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  2. Wow! What an affirmation. Count me in on the Kleenex party. I was a medical professional carrying the raft, yet using all of my energy and acting skills to pretend, to myself and others, as my life-long dysautonomia symptoms worsened after pregnancy, that it was only balloons/clothes and that I could keep living at top speed: “I am a nurse/mom, not a sick person;” “keep going;” “mind over matter,” “I can figure this out and not miss a day of work/life;” and so on. The preceding until my acting skills were outdone by neurocardiogenic syncope, which is a bit challenging to conceal or rationalize. You can blame being tachy, flushing, sweating, swelling, and GI issues on hormones or the environment, but doing the “Flat Stanley” is not easily dismissed or hidden. It does seem that I am now living some alternate version of my own life. My surroundings are the same, but things appear differently now . . . and I do not think it is just the pre-syncopal eyesight, because navigating is SO much more difficult. I wish there were a clearer map for this strange and scary place over which I used to be master. Thanks for sharing these powerful words, Jackie. I am glad there are “tour guides” like you along the way:-)

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    • Aw, thanks! It is quite an honor to be called a tour guide!

      Isn’t it crazy how our body will just keep going and going with new symptoms until we pay attention? A similar situation happened to me where I ignored symptoms and kept doing what I wanted until my body made it physically impossible. Touché body. I kept thinking each progression was “it” as in if I could deal with this, I would be set because I am young and have things to do, so how could it get any worse? I am guessing you felt the same way as a new mom and working in a medical environment. I think if I’d known what was wrong, I’d have been able to manage it better and wouldn’t have crashed, but who knows?

      The “pre-syncopal eye sight” sentence made me giggle. 😊

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      • Exactly! Alright legs, you want to swell, well here, take these 40 mmHg compression hose and try to swell now, suckers. Okay joints, if you are going to pop out all over the place, then I will just learn to pop you back in. What stomach? I can’t eat a normal meal anymore, okay, we will snack every three hours then and take digestive enzymes . . . and so on. I had both a cardiologist and electrophysiologist telling me I was “fine,” also. The electrophysiologist did an ablation on me for SVT and NS V-TACH, and told me that the symptoms I was left with were just something I would “have to live with.” The cardiologist told me that I probably had POTS but there was no explanation for my fainting and that I needed to restrict sodium and fluids if I my legs were swelling. When I told him salt helped me with the edema and lightheadedness, he said, “There is no physiological explanation for that, you need to eat less salt.” When I told him that salt and fluids are what the academic websites were recommending to increase blood volume and perfusion, he said, “I am not a researcher, I am a doctor.” He also told me that POTS does not cause fainting and that my GI issues were separate and being caused by the fact that I took vitamins and minerals for lab-work-verified deficiencies found by my family doctor. So . . . for the first couple of years, I had plenty of other medical professionals helping me pretend nothing was really very wrong with me, that my symptoms were unrelated, that I was being a wimp, and that I should just push through. It was essentially validation of my denial. After two fainting episodes in the workplace leading to near-constant pre-syncopy when upright, I finally found a POTS-literate cardiologist and got a tilt table test. I failed with flying colors without infusion of any meds. I felt so vindicated, yet it was in fact a gateway to a scary, different world . . . and I am a nurse, so I cannot even imagine dealing with this and advocating for myself without the benefit of my training.

        Yes Jackie, you absolutely are a tour guide to those of us who are new to dealing with this diagnosis, new to validating what has been going on inside our bodies, and new to trying to live some semblance of a life in spite of it all. The fact that you put all of this craziness into words is immensely helpful for newbies, both in terms of validation and in terms of trying to explain the experience to family and close friends. From suggesting the zero gravity chair for outside to posting pictures of yourself in a wheelchair (because some days that is just what it takes to get out of the house), you have helped me. I have also found your reviews of your Mayo visit, learning bio-feedback, and your visit to an EDS geneticist very helpful. I know how much effort it takes to post. I have largely slacked on blogging regarding something about which I used to be extremely passionate. Kudos to you for blogging despite illness and helping and cheering on the rest of us in the process:-) I appreciate it!

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        • I am so happy your finally got your answer! When you have doctors willing to help you along in covering up symptoms but never diagnosing the real problem, it makes it feel like nothing serious is wrong and that it makes sense to continue battling against your own body. I have so many more thoughts in response to your comment, but don’t have any energy today. So, I will just say thank you for your appreciation! It put a big smile on my face. Oh — and I feel like I slack on blogging too. I have so many posts in my head but sometimes it just doesn’t happen.

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  3. I hope things work out for me to personally experience the Moonlight Sonata that Mayo has to offer. While at OSF lab yesterday I also had someone tell me that while at Mayo she felt like she was in an episode of House. She said everything was “Wam Bam, Thank You Mam!”

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  4. “When you become ill, you notice aspects of life healthy people do not think about. People stand and talk as long as they’d like, not once squatting down during the conversation or glancing around desperately for a chair. ”

    That is so true! I remember once being in a waiting room and seeing this women who was asked to ‘Just wait 10 minutes’, and she just stood around while she waited. And I was thinking, ‘WOW, she is just going to stand there for 10 MINUTES!!!!’ I guess for a moment I kind of forgot that for most people standing for 10 minutes really isn’t a big deal!:)

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    • I agree! I had one of those moments today when my fiance said it was no trouble to grab extra things at the store for me. If it were me, there is a huge difference in terms of symptoms between grocery shopping for 10 items versus 15-20 items.

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  5. If I can fight my lack of concentration, dizzy spells, brain fog & syncope long enough I will read this book! Thank you for sharing these passages. I know I’m never alone, especially since I’ve found you as a friend, but I find such relief in novels I can relate to :) I just wish reading wasn’t such a big hurdle!

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      • I can’t really say which is the biggest struggle! It’s hard to see straight while dizzy, but brain fog makes it hard to keep a story line in order. And the pain of just sitting actually hurts my joints & I can’t get comfortable, which leads to circulation issues which can cause pre-syncope or fainting. It’s the combination of everything that makes reading difficult but even if it takes a year I feel like this book would be worth it. The sad part is, I completely forgot about it (and a few other books I have been wanting to read) due to brain fog! Maybe I should make an iPhone reminder :) And I’m sure you can relate to some of this!

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        • :( Aww. I can relate to forgetting but I’m sorry that even reading is out for you. Days where I can’t read are hard days for me. I can’t do TV and the like, so I go a bit crazy stuck in my own head if I can’t have little reading spurts.

          I’ve found my Kindle (I have an old school one that isn’t back-lit in order to avoid the blue light) helps me be able to read really easily laying down on my side. I also can highlight key facts of the story and search for words, so when I am confused or not remembering something, I just use one of those features to re-figure everything out. However, some of the days, reading is just impossible and I think most days are like that for you. I’m sorry!

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  6. I, too, do not taking buying a book lightly (I’m a tutor at my local library) but my crazy self has been LOSING books! I can’t stand the thought of losing a book I checked out…hence, sucking it up and buying/borrowing/begging said book I desire. :) I’m going to check out this one you wrote about.

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