Book Review on All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride

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My high school graduation gift – the original Walden Wahine Blue Funboard. Photo by Undiagnosed Warrior (2002).

As any avid reader will tell you, it’s really quite rare for a book to find you rather than the other way around. But that is exactly what happened with Jaimal Yogis’ third book entitled All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride. More times than not, the reader selects their next material based on their individual interests or as a way to fulfill an empty segment of the self in some manner. For some people, books bring with them all the adventure that may be missing from one’s life; other stories may appeal to more intrinsic motivations of the reader, perhaps offering the integral preservation of the self as if the words and the wisdom divulged in the ink shares the hidden secret of the world, the true meaning of life, or what you need to do to be happy. My go-to reading material, on the other hand, would put most people to sleep: college textbooks, medical journals, research studies, psychological theories, and self-help books about coping with chronic illness. Although my personal interests were much more diverse before I became really ill, both science and research were pretty much the only running theme for which I came to understand the social environment. I am far too analytical to find truth any other way. I should also preface that I’ve never made a commitment to one religion or belief system over another yet have always considered myself highly spiritual according to my own definition of the word. This was the only way that I could reasonably explain my natural attraction to the ocean or the way that large open bodies of water always made me feel at home, particularly in providing much-needed peace within the surrounding chaos of the outside world. All I’ve wished for lately, though, is some semblance of calm within this storm so that I could securely ground myself once again.

“Psychologists say blending into our surroundings is a feature of having thin boundaries versus thick ones. In decades of studies, thick-boundaried people see themselves as part of firm groups (“we do this; they do that”). They see the world as separated into good and evil. They don’t recall dreams well or feel unified with the diversity of the world. Thin-boundaried people remember many, often wild dreams. The border between self and other fall away from time to time. It’s easier for them to feel empathy, but the thin-boundaried sometimes struggle to say focused” (Yogis, 2017, p. XVII-XVIII).

This book review is long overdue as a result of the endless disarray that has taken over my life as of late. In addition to my health declining and my symptoms worsening, my ability to read and write is becoming progressively compromised as I can’t seem to concentrate long enough to put words together that make sense without significant effort and medication anymore. It’s also been challenging to manage my symptoms after recently losing multiple doctors and, therefore, having to find new providers willing to take over where the other doctors left off. Not to mention the fact that I’ve been trying to get through the final semesters of college by taking courses that unnecessarily require at least three or more different writing assignments per week. Thankfully, I only have 2 more classes left until graduation. It’s just been extremely hard to manage anything more beyond medical appointments and academics, so I apologize for the long pause in between updates. Perhaps this is one of the many reasons reading All Our Waves Are Water happened at just the right moment because, if we’re being honest here, it’s been getting harder and harder to stay positive about the future when you’re constantly dealing with one setback after the next. I mean, how are you supposed to maintain hopeful about the future when all you have to compare to is the mundane life you’ve felt stuck in for years? It doesn’t help any that I’ve been overly consumed with thoughts of permanent and total disability with the latest developments in my quest for a diagnosis – the final answers still remaining. Regardless, questions arising about the future continue to be difficult to answer with any definitely, but isn’t that case for all of life’s greatest questions regarding one’s spiritual path and purpose? At least that’s what the author of this book set out to answer in sharing his anecdotes about adversity, whether in love, in travel, in surfing, and eventually in reaching spiritual enlightenment – but perhaps not in the way that you’d expect from a spiritual novel on surfing.

“…the tube was the perfect metaphor…The definition of a wave is a “disturbance moving through a medium,” and the memory of wind is spiraling through the medium of ocean. Atoms, molecules, cells, are bouncing air’s message in an endless domino effect – a game of telephone. Each swell is a sort of ghost, an illusion that only looks like a firm set of matter in motion. And people are too. We look firm with our cookie-cutter parameters: head, shoulders, knees and toes. But the bits of matter that compose our bodies are constantly getting traded out by new water, new food, new air, new chemicals. There is no static amount of stuff that stays with us from birth to death…” (Yogis, 2017, p. 76-77).

The first thing you’ll notice when initially thumbing through the pages of All Our Waves Are Water is the fact that some chapters of the book are cut perfectly straight and narrow, while the edges found in other chapters are clearly jagged and mismatched by comparison.

This distinction in the boundaries physically represents one of many stunning metaphors found within the broader context of the book, whereas the true meaning and eloquence of these metaphors are better illustrated in the author’s tales of surf trips in exotic locations, recollection of events while in the pursuit of a graduate degree in journalism, struggling with the acceptance of adulthood at the start of a professional career, and stories of lost relationships that led to newly found friendships that ultimately composites Yogis’ mystical journey towards spiritual enlightenment. However, a lot of what is written in All Our Waves Are Water is not what you would normally expect from a traditional surfing book, though the ocean and surfing act as the underlying metaphor equating to spiritual and emotional transcendence into adulthood. Surfing and spirituality also participate in the author’s memoirs as both the antecedents and moderating variables that distinguishes life’s successes from perceived failures, acceptance from frustration, or happiness from sadness if you will. Nevertheless, Yogis does a great job at blending spirituality and surfing into the storyline as his inner voice speaks to readers using the same dialogue that we all use to converse with our friends about our experiences, while combining the positive and negative self-talk into the dialogue as either a question or guide for achieving one’s greatest path in the journey.

“This time around, for whatever reason, I had to keep close to the sharp earth and human chaos. This wasn’t the happy path or the sad path, the perfect path or the imperfect path, the caged path or the free path. It was just my path. I had to look into my heart and trust it because nobody knew it, and nobody could walk it, but me” (Yogis, 2017, p. 186).

Aside from the apparent wisdom that comes along with any spiritual growth and development, the author’s internal conflict over settling into adulthood or fleeing from the modern world also brings with it an experience that nearly all readers can relate to in learning how to adjust one’s expectations for the future to fit within the reality of personal circumstances. This, more than anything, resonated with me on a deeper level than any of the lessons found amid the author’s chronicle of events because I honestly have no idea what I am going to do with my life after I graduate from school, especially as I watch every opportunity for recovery slipping away as one treatment fails me after the next. I know we all question the future to a degree, but it’s even more so when you have a chronic illness because it’s next to impossible to plan a future when you can barely commit to plans you made for later that same day. I’d take physical pain over the unknown time and time again; life’s a lot less stressful that way.

“We all know that we could go any day: a car accident, a brain aneurysm, a heart attack, a bullet. Rich and poor, black and white, gay and straight, nothing protects us. We know this, and yet we don’t know it. We move through life as if we have forever, as if we can take a stroll around the block, the cappuccino made unusually well, the Tuesday fusilli, for granted. We live as if there will always be a million more like this. So we filter out the details. We go on stressing about accumulating achievements the big impressive things. But the big impressive things we hold up as the meaning of it all – success, the house on the hill, the shiny car, the World Series title – the things we decide are worth filtering out the little things for – are they so great?” (Yogis, 2017, p. 228).

One of the main things I loved about All Our Waves Are Water is that it provides a myriad of metaphors to help readers examine the overall quality of their lives. It was also a pleasant, but unexpected, surprise to find that a lot of the symbolism in the book seamlessly applies to the expressive nature of both physical and mental illness.

“You couldn’t run away from sadness any more than a river can run uphill… Life was sad. Really sad. Loss. Sickness. Cruelty. Death. There was no way around it. But sadness, when it was always allowed to be itself, was strangely not sad. Sadness was just sadness. Tears just salt water” (Yogis, 2017, p. 41).

Yogis’ accounts also offer readers critical lessons in coping with the pain and disappointment that’s inherent to the inherent obstacles to health and well-being when you’ve been diagnosed with a physical or mental disease as well.

“…the ‘run-of-the-mill person,’ when shot with an arrow, ‘sorrows, grieves, and laments, beats his breast, becomes distraught. So he feels two pains, physical and mental… the pains of two arrows.’ The person trained in mindfulness, however, when shot with an arrow, feels only the physical pain and ‘does not sorrow, grieve, or lament, does not beat his breast or become distraught. So he feels one pain: physical, but not mental” (Yogis, 2017, p. 190).

Could something so minimal and nearly effortless such as mindfulness be the hidden secret to having a happy life? Maybe, maybe not. But isn’t it worth trying to find out? Plus, it’s hard to argue against all the scientific research that suggests that practicing positive psychology can teach chronic illness patients how to effectively cope with pain and symptoms, thereby improving therapeutic outcomes and minimizing the need for pharmaceutical interventions in treating physiological and psychological disorders (Ghosh & Deb, 2017).

“In other words, you witness what’s in front of you – breath, sensation, thoughts, feelings – without trying to change what’s in front of you… scientists now know that doing this simple act every day increases immune function, decreases pain and inflammation, increases positive emotions, decreases depression, and on and on. Doctors are now prescribing mindfulness for everything from back pain to postpartum depression. But for early Buddhists the point was not only getting better grades, fewer colds, and feeling a little happier. It was to actually end suffering – like, for good. Thoughts create reality, when the thinking, and suffering is an experience in the mind. Master your thoughts – or simply let them be without constant reactions and identification – and you master reality. You master being” (Yogis, 2017, p. 37).

Whether you have a chronic condition or not, there’s still quite a lot to learn from this book since it’s full of the raw emotions that consistently thwart and frustrate personal growth. Part of the trouble with trying to gauge personal happiness and success accurately is that the only thing we have to compare these variables to is the modern standards that American’s use to measure and define levels of success, such as beauty, productivity, and income – none of which come even close to resembling any aspect of spirituality and enlightenment. Still, perhaps the most important lesson found in the entire book is learning how to adapt to the ebb and flow of the waves of life by approaching conflict in a similar manner as waiting for the perfect set of waves to come. While wading in the water, you can either become restless and angry or you can accept the fact that the ocean is out of your control. In other words, there will always be difficulties in life – it’s simply unavoidable – but it’s how you choose to handle or perceive each individual setback that will ultimately regulate the amount of pain or suffering you experience as a response. Personally, I’d rather bask in the sunshine than not feel the water at all.

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Waiting for that perfect wave while surfing Sebastian Inlet. Photo by Undiagnosed Warrior (2002).

“There are cycles. Some patterns repeat. Some are shocking flash floods. But here is the thing about storms. I don’t wish them on you, but they are coming and would you want it differently? What would we talk about? How would we become strong? How would we get off our lazy asses and look into what is actually going on here? What would we celebrate? Storms, after all, have that rare power to bring us – yes, we humans who love to devour each other and put it on TV to watch again – together” (Yogis, 2017, p. 230).

The hardest decision in life essentially lays in the choice to either run from the storm or ride it out. The only person with enough power to settle on the best course of action, in this case, is you – no one else can choose a path for you. It helps when friends and other loved ones support your journey by offering enough encouragement and motivation to push you forward in attaining your hopes and dreams for the future, even if there may be many obstacles left to overcome. In all reality, that’s truly what life’s journey and spiritual enlightenment are ultimately all about – it’s the endless pursuit of goals and self-actualization in hopes of achieving one’s highest potential so as to gain access to the ever-elusive experience of spiritual awakening (Maslow, 1943). The rest of the time is merely paddling through the choppy water until you reach the eye of the storm so that you can breathe for a moment before starting the process over once again.


All Our Waves Are Water

Image by Jaimal Yogis [http://www.jaimalyogis.com/]

If you’d like to purchase your own copy of All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride, please visit one of the following online retailers:

https://www.amazon.com/All-Our-Waves-Water-Enlightenment/dp/0062405179

https://www.harpercollins.com/9780062405173/all-our-waves-are-water/

https://www.barnesandnoble.com/w/all-our-waves-are-water-jaimal-yogis/1125172299


References:

Ghosh, A., & Deb, A. (2017). Positive Psychology Interventions for Chronic Physical Illnesses: A Systematic Review. Retrieved from https://link.springer.com/article/10.1007/s12646-017-0421-y.

Maslow, A. H. (1943). A theory of human motivation. Psychological Review, 50(4), 370-396. doi: 10.1037/h0054346.

Yogis, J. (2017) All Our Waves Are Water: Stumbling Toward Enlightenment and the Perfect Ride. New York, NY: Harper Collins Publishing.

Really Exciting Announcement

October is Dysautonomia Awareness Month…

and I have some really, really  exciting new to share with all of you.

Back in August, I was selected as a volunteer patient advocate for Dysautonomia International for my area and I submitted a request to city council asking for a proclamation on behalf of the City of Colorado Springs formally recognizing the month of October as Dysautonomia Awareness Month. So after following up on the request for weeks and keeping in touch with other volunteers from the organization, the city signed my request this week. It was formally announced today on the Dysautonomia International website and has been sent out to all the local newspapers and news stations in the area. I’m not sure if the story will be picked up but I’m so proud and honored to be given this opportunity.

Copy of the Proclamation

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City of Colorado Springs Proclamation for Dysautonomia Awareness Month

The Official Press Release

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Posted on the Dysautonomia International Facebook Page

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 Other Pictures

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Can you tell that I was excited?

I’ll be posting a ton of awareness stuff throughout the entire month of October, although most of it will likely be on the Undiagnosed Warrior Facebook Page. You can visit the page here  if you’re interested in learning more about Dysautonomia.

I will also have some really important medical updates to post as well. I’ll try to get those updates posted as soon as I can. Hope all my fellow warriors are managing okay.

Welcome to the new age, to the new age…

The anticipation had been killing me, but I finally received the call that I had been eagerly waiting for from the vascular surgeon. I was in my therapist’s office when the call came in, but luckily she was kind enough to let me take it since she knew it was something I had long been waiting for. I think she was curious herself. Needless to say, it was probably a good thing I was in her office when the call came in, as I was not a happy camper.


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He started by saying he looked at my CT Angiography results and he had spent some time doing research, as well as talking to fellow vascular surgeons. 

Good.  I figured he had some research to do, considering the result. 

He goes on to say my renal vein definitely shows a large amount of compression.

Okay, go on.

He asks how I’ve felt lately.

“Terrible.”

“Remind me of your symptoms again?”

*sigh*

“Well, I have had horrendous stomach pain every day.

I’m nauseous constantly.  

I can’t eat anything without being sick. I don’t digest my food.

I have diarrhea and/or constipation that is limiting.

I am tired all the time. And not just tired, EXHAUSTED.

Dizzy, heart palpitations, spinning, and chest pain.

My limbs go numb. I have arthritis. My legs are stiff and painful.

I have livedo reticularis. 

I have painful rashes. They are getting worse and change day-to-day.

My hands are now so blistered I can barely hold on to anything…”

He says, “well none of those explain Nutcracker Syndrome…”

“Right. I haven’t had hematuria in years. Just the back pain and left, flank pain. Abnormal, unexplained bleeding. But all my abdominal pain is on my left side…

“So yeah, nothing relating to the Nutcracker Syndrome. Like I said before, I don’t believe in it.”

“What about the Superior Mesenteric Artery Syndrome? Or the May-Thurner? Both were noted in the results.

“I saw it, but I don’t believe they are the cause of your symptoms” he says.

“Well, SMAS can cause severe abdominal pain, nausea, anorexia, vomiting…”

” No vascular compressions typically causes any symptoms at all. None of us (vascular surgeons) believe that these ‘syndromes’ exist.”

“Oh…”

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“Besides, on the small chance that these conditions even exist, they are so rare. It’s not possible for you to have all three. “

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So the report it wrong? Because it says I have all three.

I felt my face getting really red. I didn’t know whether to cry or scream.

“I think whatever you have is systemic.”

“But it’s not showing in my blood work. If it was systemic, you’d think my blood work would show it…”

(I think this to myself, but I can’t say it out loud. I’m too frustrated and  taken off guard to even say almost anything at all)

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“Like I told you during the consult, I want to take a very ‘conservative approach’ to this. I don’t suspect the Nutcracker syndrome is causing your illness. I suggest you continue looking for the cause of your illness elsewhere. After you have exhausted everything else possible, then come back and I’ll re-examine you again. If at that time, you don’t have a diagnosis despite exhausting all other options, then we can go ahead and try to balloon the vein and see if there is any relief.”

“Okay. Thanks for calling.” I hang up.

I’m positive that there was no hiding the disappointment and  sadness in my voice during that call.

I don’t care though. Maybe it’s something he should hear. Not that he cares.

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I am beside myself at this point. I can barely breathe, my chest is tight, and I have no idea what to do.

So let me get this straight…

All these world-renowned doctor’s, who have researched these disorders extensively, don’t know what they are talking about?

The Mayo Clinic, The Cleveland Clinic, and The NIH know less than you, is that correct?

All the patients in my support groups are just lying about their symptoms?

Everyone in the Nutcracker Syndrome Group?

The Superior Mesenteric Artery Syndrome Group? The Wilkie’s Group? SMAS Support?

The May-Thurner Syndrome Group as well?

Not to mention these patient’s doctors (world-wide) who not only diagnosed them with these “imaginary” syndromes but also are treating them for it too. Are they lying?

The invasive surgeries that these patients have undergone, their feeding tubes that have saved their lives, their medications… Is it all for nothing?

All of those people with these ‘non-existent’ disorders, particularly SMAS, that have lost their lives to these conditions… must have never existed either, right? 

What a crock of sh*t!

{Excuse my language.}

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I debate on sending him all the research and case studies I have found.

There’s so many, but it probably wouldn’t matter anyways.

GARD Superior Mesenteric Artery Syndrome

Superior Mesenteric Artery (Wilkie’s) Syndrome as a Result of Cardiac Cachexia

Wilkie’s Syndrome

Wilkie’s syndrome causing persistent vomiting

Patient with Both Wilkie syndrome and nutcracker syndrome

Nutcracker Phenomenon and Nutcracker Syndrome

Case Report: Nutcracker syndrome: A rare anatomic variant

Current trends in the diagnosis and management of Renal Nutcracker Syndrome: A review

May-Thurner Syndrome

The list goes on and on…

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I feel panic inside. Now, what do I do? Where do I go from here?

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I tell my therapist what was said. Of course she thinks this is crazy. At least it’s not just me. She has looked into every condition and every medication the doctors have mentioned or I’ve found in my research. This is why I like her so much and why I continue to keep going. She tries to understand me. She respects my opinions. At least there’s someone.

I see her look down at my hands and legs. My hands are red, swollen, peeling, and visibly painful. My legs clearly look bruised in spots, with purplish-molted discoloration.  

She asks me, “what’s next?”

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I have composed myself by this point. No point in breaking down, anyway. There’s nothing I can do to change this doctor’s mind. Plus,  I’m used to being disappointed by doctors. He’s not the first one to not believe me, or give up on me. Sadly, he probably won’t be last either. 

“I find another vascular surgeon. Get a second opinion. I start over… again.”

“How do you feel about that?”

“I’m just tired of it, really. I feel nothing anymore. You get so close, then hit a wall. Over and over again.”

“That’s frustrating. It shouldn’t be that way”

“No, it shouldn’t. It’s unfair and it sucks, but that’s the reality of it. This is how it is to be chronically sick. Normal people don’t see this side of healthcare in their yearly check-ups or their infrequent appointments for a cold or flu. But we (those with chronic illness) deal with it every day.  Every day is a fight to get the proper care. These doctor’s don’t care. Health care in the United States was not meant for us (chronically ill). Yet, we keep fighting, who know’s how. Probably because there is no other choice. What else can you do?”

I lean further back in my chair. I’m not hiding my frustration or disappointment well. I know she understands, or at least can acknowledge,  how I feel. This alone makes me feel better. Well, at least better enough not to scream or cry, which was my initial reaction to the news. Even though I have had plenty of time to process what was said by now, I’m still in a bit of shock.

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As per usual, today was spent picking up all the pieces.

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I called multiple vascular surgeons all over the entire state and I found a few actually in town that accepted my insurance. Although I know an in-state doctor more than likely won’t have a great deal of expertise on any of my conditions, it’s the only option I have currently. I’d prefer to see one of the very few doctors (all in the highly accredited and well-known clinics across the country) that specialize in these disorders, but my insurance won’t pay out of state and it’s just not feasible for me financially. At least not at this time, maybe ever.  

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I made sure to ask them if they had surgeons who were familiar with ‘rare vascular compression disorders’. Of course, a lot of explaining of the conditions ensued and I had to be placed on hold multiple times while they asked the doctors, but I found two potential offices that may be able to at least give me a second opinion. They need another referral, however, which wouldn’t be an issue if my primary care office would actually answer their phone so that I could schedule an appointment with my doctor. But alas, both yesterday and today I got the infamous voice mailbox that literally goes nowhere. (There’s no actually recording, just a beep to leave a message. And every time I do leave a message, I NEVER get a call back) I guess I’ll try back on Monday.

Thankfully, Monday is the start of a new week.

It’s a good day to start from the beginning, once again.

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Keep Your Head Up, The Colors Are Beautiful

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Lot’s of new things on the horizon, so I figured I’d give a short update.

  • On UndiagnosedWarrior: Been updating and organizing pages, adding new information, noting some tips and tricks, and other things here and there. Take a look around and let me know what you think. I have some good ideas and really want to add more content for those looking for a diagnosis, as well as those who have already been diagnosed. And, of course, keeping you updated on my search for a diagnosis. 
  • On Life: I’m officially back out of work, but this time my short term disability has been approved. After the whole mess with getting a Lupus diagnosis, then having it taken away, then given back by a different doctor, I’m still confused as to whether or not I ACTUALLY have it.  I have a few tests pending and some recent tests that have come back with very interesting results (*Hint: It was enough to finally PROVE my disability claim). I’m waiting for the doctors to call to discuss their thoughts, so I don’t want to jump the gun on yet another diagnosis, so I’m going to wait to post, but I’ll update as soon as I can.

As for now,

I just want to leave you with the strength in knowing

 that all your struggles, all your hard work, and your persistence to keep looking 

IS WORTH IT!

I know it is hard to stay patient and that you are tired of waiting,

especially when  you have been sick for so long.

But waiting is always the hardest part. 

Keep trusting your instincts. 

Trust the journey.

You know your body better than anyone.

The answers lie WITHIN YOU.

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“Keep your head up
The colors are beautiful
When they say give up
Turn up your radio
All the sentimental memories you own
When they say grow up
It’s just like a funeral
Keep your head up
The colors are beautiful
Keep your head up
It’s all right in front of you
When they say wake up
You’re breaking ridicule
When all the sentimental memories you own
Keep you trapped inside your room there all alone

And it feels like
It feels like you’re lost
And it feels like
It feels like you’re lost

Is there some way you can be out on your own?
Trust yourself
Don’t waste another day at all

On your own

Keep your head up
The colors are beautiful
And it feels like
It feels like you’re lost
And it feels like
It feels like you’re lost

Is there some way you can be out on your own?
Trust yourself
Don’t waste another day at all

Watch this fade away
Everything fades away
Keep your head up
The colors are beautiful”

(“Head Up” by Sugarcult)