chronic illness

The Body Keeps the Score, Bessel van der Kolk

/ Gallivantrix / 1 Comment

This remains one of my favorite books for trauma recovery. I read it right after CPTSD: Surviving to Thriving, so close that they seemed like one big book. I finally had a chance to re-read it almost a year later. Those wait times at the public library are intense, but I guess I’m glad so many people are reading this kind of book, especially during COVID. This book currently lives in my top 5 list for therapy books, and I highly recommend reading them together like I did, as they are very complementary. This post is very long because this book is very full of important ideas. I hope you stick with it.

Bessel van der Kolk is a very accomplished and experienced psychiatrist and researcher in the area of trauma. He started working with Vietnam veterans in the 1970s (before PTSD was a known diagnosis) and has been instrumental in hundred of studies and research projects to better understand the impact of both single traumatic events and long term traumatic exposure. His work with war veterans led him to understand how childhood trauma was both similar and different from combat trauma, and he has been vital to the understanding of CPTSD. He is an expert the experts defer to. “The Body” was published in 2014, so it’s fairly up to date as far as technology and research techniques described.

This post is so much longer than other book reviews because the book itself covers so much. It tells the history of understanding and treatment of trauma. It explains the scientific studies used to advance that understanding and treatment. It addresses the social, political, and economic barriers to the study, understanding, and treatment. It shares case studies of individuals suffering from and recovering from trauma. It shares statistics of the staggering number of people who have been traumatized in one way or another in life. It addresses the critical link between “mind, brain, and body” in how trauma affects us and how we heal from it. And it looks into a range of treatment options, explaining how and why they work, or don’t. Yet somehow, Van der Kolk does all of this in a casual and personal narrative style that carries the reader through his life’s work in a compelling and interesting way.

Just My Highlights

There’s no way for me to even try to summarize everything that Van der Kolk talks about here. I won’t do it justice. I stress again how worthwhile a read this is for everyone. Understanding trauma and the historical, social, and political context of cycles of abuse is the only way we will ever make changes. There some standout points that I want to zero in on for my review, and some opinions I’m squeezing in because this might be my last therapy book review post.

The Historical Cycle of Trauma and Suppression

Hysteria and Sexual Abuse

In the mid-late 1800’s some ‘scientists’ named Jean-Martin Charcot and Pierre Janet were studying hysteria. Although a lot of the people diagnosed with hysteria were women, there were also cases of “hysterical blindness”, “hysterical paralysis”, memory loss, and a host of strange behaviors that occurred in people across the gender/age spectrum. At first, Charcot was looking for a physical cause, but when he was unable to find one, he turned to hypnosis, and came to the conclusion that all these problems were being caused by the repressed memory of traumatic events.

Freud came along and got really into finding out what those traumatic events were and got deep into talk therapy, actually listening to his clients (not something doctors had done before). He determined that the young women suffering in this way were all suffering as a result of sexual abuse at the hands of an older male relative. He thought he had a great breakthrough, until he realized that it would mean that a huge number of the well respected men in Vienna would be guilty of raping their daughters and nieces, including his own father. He thought that maybe the promiscuous FRENCH could be doing that, but he just couldn’t countenance that his own Viennese men could be doing the same. He backpedaled and changed his theory, placing the blame on the girls as “seducers” of their fathers and uncles.

World War I & Shell Shock

Then a few short years later, as WW1 came around, and there were British soldiers having weird symptoms after battle. The term “shell shock” was coined and some scant treatment began. However, as the tide of the war shifted against the British, the top brass decided that “shell shock” was just a coward’s excuse. That “real men” don’t break down from a little light war trauma, and they banned the use of the word in any documents. Some soldiers were arrested, imprisoned and even executed because they had trauma that no one in charge wanted to believe in.

There were plenty of doctors pleading to be allowed to study and treat it, but the gag order was politically expedient to win the war. Another generation was blamed for exhibiting symptoms of trauma that those in power had caused. In America, the WW1 vets had it a little better for a brief moment. They were temporarily greeted as heroes and awarded combat bonuses, the money to be given as a delayed payout. When the depression hit, the veterans rallied in DC to ask for their bonuses so they could afford housing and food. The police and army were sent in to scatter them and burn their camps. Congress voted to never give the vets their money, and they were left to fend for themselves as a new crop of young men were lined up for the slaughter of the next big war.

World War II, Vietnam & PTSD

WW2 of course went through just about the same thing. Suddenly “shell shock” was rediscovered to be real. It was even treated for a hot minute before being dismissed again when the reality of the extreme damage being done to a generation of people in the name of war turned out to be too big a price tag for the law-makers at home. Generals and politicians would much rather believe that men and women are faking it, or fragile, or damaged in some way that the leadership cannot be held accountable for. It wasn’t until the Vietnam veterans came back that we finally started to see a break the cycle of discover and repress. PTSD is now a well recognized condition, but the battle isn’t over. It’s currently recognized almost exclusively for combat veterans, with some exceptions for civilians in war, major catastrophes like the 9-11 building collapses, or devastating natural disasters.

Van der Kolk and his associates, however, found that trauma comes far more frequently and affects far more people than this commonly accepted understanding of PTSD can encompass. In addition, the results of ongoing or repeated trauma, of childhood trauma, or of sexual trauma may have many similarities to PTSD as described in the DSM, but it’s not 100% the same and more importantly, the treatments are not equally effective. These discoveries led doctors like Van der Kolk to advocate for a new diagnoses in the DSM:  Disorders of Extreme Stress Not Otherwise Specified (DESNOS) aka Complex-PTSD, or CPTSD for short.

The DSM is BROKEN

What is the DSM? Some of you may know it well, others may be totally confused. DSM stands for Diagnostic and Statistical Manual of Mental Disorders and it’s the big book of Mental Health. Doctors and insurance companies use the DSM for diagnosis and treatment, but in America anyway, more importantly MONEY. Insurance will not cover a diagnosis or treatment that is not listed in the DSM. This gets tangled up very quickly, because when health and money meet in a room, health loses every time. I can’t even scratch the surface of everything that is wrong with the American DSM model, but in regards to PTSD and CPTSD the main problem is that they are NOT the same.

Multiple studies have shown over and over that they are not the same, and that treatments for one do not work for the other (or may work, but less effectively). As a result of this, people who are suffering from prolonged traumatic exposure get diagnosed with: ADD, ADHD, GAD/anxiety, depression, bipolar, BPD/borderline personality, anorexia, bulimia, OCD, alcoholism, drug addiction, and a bunch of other acronyms because the doctor is trying to address their symptoms in a way that fits the DSM. The best case scenario is that they do this because they know the insurance won’t pay for it if it doesn’t match the book. The worst case is that they simply do not believe any diagnosis not in the book is real.

DSM 5 Defines Trauma

I did some extra reading about the DSM, since van der Kolk only mentions the failed attempt to get CPTSD into the DSM 4 in 1994, and we are currently on DSM 5. I wanted to know if any progress was made. The answer is unfortunately, not really… They did expand the diagnostic criteria for PTSD, and added a “children under 6” category, but it’s still not going to cover most people in the CPTSD range.

What is considered “trauma” by the DSM is extremely limited : “The person was exposed to: death, threatened death, actual or threatened serious injury, or actual or threatened sexual violence”. It fails to reflect any of the studies of long term exposure to many other types of trauma, such as the ACE study, nor has any relation coercive control style abuse.

I discovered another diagnostic manual called the ICD-11 (International Classification of Diseases) has added a separate category for CPTSD. The bad news is that it is very limited in scope. It still focuses on exclusively horrific traumatic circumstances where escape is unlikely, like torture, genocide, slavery, etc. “Prolonged domestic violence” is there, but not well defined. There remains no reference to the coercive control or psychological control that prohibits escape, nor of issues like systemic racism or medical trauma. In addition, it requires flashbacks (intrusive memories & images) as a symptom, which are common in PTSD, but according to most experts, not in CPTSD where emotional flashbacks (which lack a visual component) are more common.

Treating a Symptom Instead of a Cause

Without the ability to get a correct diagnosis for the underlying cause, many CPTSD sufferers are limited to receiving treatment only for their symptoms, so while these people may experience relief of symptoms while under treatment, their suffering resumes as soon as that treatment stops. Not only is this a massive healthcare disservice, but it’s contributing to a huge waste of money. Traumatized individuals are unable to function in a healthy way, and often need government resources for chronic health issues, job loss, and criminal behavior. (if you need more proof of this, read the book)

Additionally, some of what are seen as “problems” might really be “solutions” within the context of trauma. An alcoholic is not merely physically addicted to alcohol; their drinking is a self prescribed treatment to forget some pain they are unprepared to deal with or in some cases even acknowledge. The same can be true for any addiction including gambling, drugs, sex or food. In the Realm of Hungry Ghosts by Gabor Maté is an excellent exploration into the traumatic roots of addiction including socially prized addictions like overworking.

Obesity is another great example of why we can’t just treat symptoms. It is a major health epidemic in modern America, but if people are overeating as a trauma response, a defense mechanism, or to self-sooth, then no diet/exercise program will ever be successful until the core wound is healed. Van der Kolk explains that many obese patients also have a history of sexual molestation, assault, or abuse. Others may have been bullied or beaten up when they were small, and may feel strong and powerful by being larger than anyone else in the room. They feel safe from future assault or abuse because of the extra weight.

Of course, most people suffering this are not consciously aware of this in the mind. They do not think “fat will protect me” as they have another scoop of ice cream. They just feel better when they eat, so they eat. When they go to a doctor for help, it should not only be about diet, exercise, or surgery, but should include a look for deeper mental health causes that lie at the root of addiction issues. The problem with that is, as long as the DSM and major health organizations refuse to recognize that systemic social problems and resultant trauma are causing all these health problems, patients will continue to be misdiagnosed, mistreated, and inevitably blamed and shamed when their incorrect treatment fails.

The Cycle Isn’t Broken

My takeaway from all of this, the history and the DSM, and stories in the book of how van der Kolk and his associates were thwarted from doing research or having that research recognized, is that we have not escaped the cycle of notice and repress. We are still as a society unwilling to recognize that parents, caretakers, leaders and other people who are supposed to love and protect us are the deep root cause of untold amounts of pain and suffering. Crime, violence, illness, and death are all linked to childhood and domestic trauma, yet we can’t even properly diagnose or treat it. We’re looking for ways to blame the victims, a faulty gene or just a lack of moral fiber, but heavens forfend we look hard at ourselves and see the damage that our blindness is causing.

So many of the books I’ve read on this journey talk about the fact that trauma is caused by what the brain perceives as a threat, not what is objectively a threat or agreed upon by society to be a threat. Limiting PTSD and CPTSD diagnoses and treatment to people who have experienced “bad enough” trauma by someone else’s standards is part of the denial and suppression cycle. Of COURSE genocide and sexual slavery are undeniably horrible. OF COURSE the people who experience that are traumatized. What Van der Kolk and many others are trying to show us is that trauma is neither rare nor limited to such obvious horrific sources — that in reality, trauma is widespread and pervasive in the world, and that it comes from places we don’t want to see.

Although the scientific and ethical advances of the last 40 years enable us to look back at the hysterical women or the shell shocked soldiers and finally recognize the injustice done to them, we are not immune to selective blindness and denial. Just like Freud could not admit his own father or other “respectable” men of the city were committing atrocities on their own daughters, just like the generals could not accept that the decision to send young men into war was dooming their minds as well as their bodies, modern society struggles to accept that parents, teachers, lovers, doctors, and bosses are responsible for traumatizing millions under their care. Being able to admit the reality should not be about blame or retribution, but rather about truth and reconciliation. Until we are willing to face the facts, millions of people will be barred from true healing, and inevitably pass their pain on by traumatizing others in continued generational cycles.

Mind, Brain, Body

The other main takeaway of this book is the way in which the brain and body interact. Van der Kolk refers to a triad of “mind, brain, and body”, which has some nice literary overtones, the rule of three is a popular way to go. It also, I think, helps people to bridge a previously unbridgeable gap between mind and body. Starting with Aristotle and made ‘accepted fact’ by Descartes, a lot of people for a large part of history have believed that the “mind” is a totally separate thing from the “body”. Despite the fact that Descartes was a philosopher and had no physical or medical evidence to support his theory, it was so pervasive in the minds of the educated men that when modern medicine made the scene, no one really thought to challenge this “accepted fact”. At most, doctors believed that while the mind may be able to exert some control over the body through conscious effort or willpower, that the feed was strictly one way. ‘Mind over matter”, right? Wrong.

Advances in Science Change Our Understanding

As the study of neurology really came into its own in the 1990s, we got to learn all kinds of amazing stuff about how the brain works. The brain is a physical organ that runs on chemical and electrical reactions and controls the body, more or less. But… it is also where the mind resides. We still haven’t found the “seat of consciousness” in the brain, because it turns out that what makes us “us” is a very complex system of electro-chemical reactions, only a very small amount of which we are aware of at any time.

Start by thinking of your “mind” as the part that does the thinking (your “self”, your autobiographical memory, your inner monologue, and such); and your “brain” as the gray stuff inside your skull that releases hormones and neurotransmitters, and handles the auto-pilot for all the organs you can’t be bothered to think about (what does a spleen actually do? Your mind doesn’t know, but your brain does); and then your body is everything else. Then you can start to see where van der Kolk is going with this triad, but it’s not really three separate things, it’s more like three concentric circles. The mind, after all, resides in the brain, and the brain resides in the body. They are connected intimately and they are inseparable, and the flow of information goes in all directions.

We think of our body as being under our mind’s control, yet, that’s barely true. You don’t control most of your organs. You can hold your breath for a bit, and control your toilet needs for a short time, but other than that, you can’t really interfere with the body’s functions. Moving my fingers along the keyboard is a conscious effort of my mind, but if there’s an unexpected loud noise while I’m working, I will flinch and look around well before I’m aware of doing so. My “mind” doesn’t make that decision, my brain and body get on about it without me.

In fact, there is a lot that happens in our bodies that affect our brains, and then in turn change the way we think. For one example, the vagus nerve is a large nerve road that leads up from the gut into the brain, but most of the information that travels along it is not sending instructions down from the brain, but instead is sending information up from the guts/abdomen/lungs/heart to the brain. Van der Kolk examines the way in which mental health issues manifest in the body, and even more cool, how engaging the body in therapeutic techniques can help to heal mental health.

The Body Manifests the Damage of the Mind

In addition to the long list of mental health issues that can result from unrecognized PTSD or CPSTD, there are a lot of body health issues that can crop up as well. We can all think of physical reactions to stress like an upset stomach, or a headache, but that’s just the tip of the iceberg. As the trauma goes untreated and often suppressed or ignored, the body takes up the symptoms. Thus, the name of the book: The Body Keeps the Score. Things like asthma, chronic fatigue, chronic pain, epilepsy, obesity, diabetes, heart disease and cancer are all common body reactions to long standing traumatic suffering. The ACE study (Adverse Childhood Experiences) done with the CDC and Pfizer found that people with an ACE score of 4 or more had a much much higher incidence of all these physical health issues*. That means that the more types of trauma children suffer at home, the more likely they are to be sick as adults.

*NOTE: the ACE study is not a diagnostic tool. It was a study of trends over a population and should not be taken as an indication for any individual. Many contributing factors for trauma and recovery are not accounted for in ACE. Not all children who experience multiple ACEs will have poor outcomes, and not all children who experience no ACEs will avoid poor outcomes—a high ACEs score is simply an indicator of greater risk

I was personally struck by the chronic fatigue and pain issues because I struggled with both while I was still a teenager living in my mother’s house. In the end, I was told I had fibromyalgia: a diagnosis that is based on patient’s reported symptoms and a lack of evidence for any other clinical diagnosis. I had many other health problems while under the control of my parents that diminished as I gained independence and distance, only to return in other stressful times of my life.

It’s All In Your Mind, But Not The Way You’ve Been Told

“Psychosomatic” is a word that is far too often used as a synonym for “imaginary”, and yet, that’s not what it means. Psycho means “of the mind” and somatic “of the body” so, yes, it means that a bodily symptom is caused in the mind rather than from an outside agent like a virus, bacteria, tumor, etc. Chronic illness sufferers frequently have physical symptoms ignored, dismissed, and even been accused of making things up for attention. Far too many medical professionals are stuck in an outdated model of medicine in which the mind and body are separate, and must be treated separately, so that if no evidence of illness exists in the body, then they believe no illness exists. Have you ever told your doctor something hurts only to have them say, “well, it shouldn’t” or worse “no, it doesn’t”?

As I read this book, I began to see the connection between my original trauma, my trauma triggers, and my health issues, and I gained validation for my rejection of the idea that any of my physical issues are “all in my head” in the standard western medicine pejorative use of the phrase. I learned a new way of understanding what “in my head” really means. Van der Kolk and his associates have conducted a number of studies that demonstrate that the physical symptoms generated by traumatic stress are real, and they can be healed by addressing that trauma. It may be “in our mind”, but it’s also in our brain and in our body because those three concepts are not truly separate.

How To Heal Trauma

Professional Help

Most professionals in PTSD/CPTSD agree that it is necessary to access and integrate traumatic memories in order to heal. Up until very recently, the primary way to do this has been talk therapy: a specialist helping to guide a patient to talk about the traumatic experience and then guide them into placing it in the past. Exposure therapy and hypnosis have also been used with alternating success. Hypnosis got a bad rap for supposed “planted memories”, and that turned out to be mostly media hype, but the damage is done. Exposure therapy can work for some things, but a lot of trauma survivors end up being re-traumatized by exposure therapy, not healed. Talk therapy has the best track record, but it’s hard because you have to form a trust-based relationship with a trained therapist which takes a lot of time and money.

There are a few other therapies that need to be done by a professional that use the brain body connection. One of these is EMDR (eye movement desensitization and reprocessing), it uses bicameral stimulation to help patients access traumatic memories and to integrate them into the proper context. EMDR is not hypnosis; it does not require a trusting relationship nor rely on the doctor to uncover or interpret anything, and it has a pretty good success rate with very low recidivism. It works better on PTSD than CPTSD, and better in adult onset trauma than for childhood trauma. No one really knows why the bicameral stimulation works this way. The leading theory is that it simulates a sleep state (REM) when the brain sorts memories out of the “now” bin (hippocampus) and into the “past” bin (neocortex). Memory integration is a normal function of sleep, but traumatic memories are often stuck in the “now” bin, which is why they still feel so urgent. I know the chances of it working for me are not great, but I would still like to try it if I ever get the opportunity.

Another method is neurofeedback. Using an EEG to measure brainwaves, doctors can show patients what various parts of their own brains are doing by translating the brainwaves into audio or video signals. Then the patient can learn to control certain types of brainwave activity through a kind of trial and error while getting easy to understand feedback from the music or video. Being able to hear/see our own brainwaves gives us a concrete goal to focus on and enables us to use the mind to control the brain.

The last one examined in the book is “psychodrama“, which sounds like what you go through with your crazy ex, but it’s actually a kind of theater therapy. Actors and doctors worked together to create a variety of programs to help trauma survivors process their feelings. It can give patients a way to roleplay out experiences in a safe environment, thus getting resolution to previous instances, or plan on how to handle future triggers. It can help patients find words they need to express their feelings, or it can even provide words when the patients cannot find their own. An episode of the medical drama New Amsterdam showed the hospital psychiatrist making vets with PTSD put on a performance of one of Sophocles’ plays about a soldier abandoned by the military after being wounded. It is not a medically accurate TV show, but it was cool to see psychodrama being used in pop media, and that particular play is actually used in psychodrama therapy in real life to help soldiers process feelings of loss and betrayal in therapy for PTSD.

Self-Help

The big message of this book is that our mind, brain, and body are inextricably interconnected. We can’t treat symptoms without treating the cause. In order to heal, we must heal all three together. The mind-body connection flows both ways. The mind can make the body sick, but the body can also heal the mind. If you can’t afford or even find a therapist who is knowledgeable in CPTSD or the techniques listed above, you can do body work on your own.

Body work, or somatic therapy, is a way that trauma survivors can learn to feel safe and present in our own bodies again. Things like massage, yoga, meditation, dance, or tai chi can all help a trauma survivor to re-establish a healthy mind-body connection and learn how to listen to the signals of the body again. It’s not necessary to do those activities with any particular focus on your trauma because the benefit comes from establishing a deep connection between your mind, brain, and body, and these activities on their own have been shown to reduce symptoms of depression, anxiety, invasive thoughts, emotional dysregulation, and executive dysfunction when done regularly over time. 

It’s hard to believe that something so simple (and free) can have such a large impact on our mental and physical health, but if you’re struggling, then it can’t hurt to try. There are tons of free YouTube videos, apps and games for the phone, and even a few gaming systems that take all the guesswork out of what to do, just follow along for 10-20 minutes at a time. A quick Google search will turn up dozens, but here are the ones I use:

Yoga: I enjoy going through this 30 day challenge because it’s a little different every day, and I don’t get bored. It’s ok to skip activities that hurt or are too hard.

Grounding/Mindfulness app: PTSD Coach was designed for veterans and is sponsored by the VA, but you don’t have to be a vet to use it. Even though it’s aimed at combat PTSD, many of the free activities are good for anyone in need of more grounding and mindfulness.

The Tripp app on Oculus Quest: I know not everyone can afford a gaming system, but if you happen to already have one in your home, this is a stunning audio-visual experience that makes daily meditation and breathing exercises a real joy.

If you’re like me, and you want to see the science behind why this works, then there’s no better place to start than this book.

9 Days in Taiwan 2/2: City Scenes & Foodie Dreams

/ Gallivantrix / Leave a comment

Taiwan part 2: In addition to beautiful natural scenery and a wide variety of temples, I meandered around some of the more famous urban settings such as the “old streets”, night markets, subway stations, urban parks, and street art. Winding through every Taiwanese experience is the food, unique and delicious. I often forget to eat while out doing tourist activities, but here the food IS the tourist activity, so come hungry!

City Scenes

Taipei

Shifen Old Street 十分老街
I went here as part of a day tour which also included the Geo-park, the waterfall, and the other famous old street, Jiufen. Old streets are very heavily curated quaint “old timey” feeling places that are actually tourist traps, but they’re fun tourist traps, with good food and excellent instagram photo-ops, so very worth going to. There’s nothing wrong with enjoying inauthentic-yet-fun attractions.

Shifen is famous for it’s train-tracks and the lanterns. It’s one of the only places you can send off a flying lantern, and probably the only place you can do it while standing on working railroad tracks. It’s a very small place, you won’t spend a day there, but it’s fun to walk around and see the small shops, specialty local foods, and of course, the lanterns.

Jiufen Old Street 九份老街
My views this day were severely inhibited by a very dense fog. This is advertised as the place that inspired the art of Spirited Away, but my guide told me that Miyazaki said he’s never been here. When I followed up later, what I found was this interview he gave (sorry, it is NOT in English) where he says he bases the scenes of his movies on his own surroundings in Japan, not in Taiwan.

20190111_141403

Jiufen does bear a striking resemblance to the city scenes in Spirited Away, but it is purely coincidence. I actually find it very sad that the Taiwanese tourism industry is promoting this untruth to attract visitors because Jiufen is amazing in it’s own right both because it is beautiful, and because of all the amazing food. People who go only because of it’s nonexistent connection to the movie come away disappointed instead of just enjoying Jiufen for what it is.

If you’re in Taipei, it’s certainly worth the visit. We took a city bus to the top of the road and walked back down to the tour bus parking lot. It’s about 200 stairs and only one way, so you won’t see different sites walking both up and down. I have a lot more to say about Jiufen in the “Foodie Dreams” section of this post below.

Taichung

Xinshe Castle 新社莊園古堡
This is a fantasy resort designed to look like a European fairy tale. It’s a little piece of Europe for those who can’t visit. When you think about it, it’s not that different from a Western country having an Oriental garden with little Tang Dynasty style buildings and pagoda gazebos. Sometimes you forget that other people are watching us while we’re watching them. I probably wouldn’t have gone on my own, but I was invited along with an ESL teacher who was also on holiday from Korea that I met in my hostel. She used to live in Taiwan and spoke quite highly of the garden and grounds. She was most excited about the swarms of fish in the pond that practically shove one another out of the water to get at the fish pellets tourists drop for them.

Most tourists go there to take pictures. Asian cultures really enjoy posing in photos, so much that there are often lines to stand next to famous landmarks or views. People will respect the line, but if you only want a photo of the view with no people it can be a real challenge. Since it was winter, there weren’t too many people in the park and I got a lot of photos, but I still had to wait strategically to get the best views free from posers.

Houli Forest Park 后里森林園區-天上掉下了一顆種子
After Xinshe we went to a flower garden which was less flowers and more interesting visuals including a really immersive video of pollen and a giant globe light show. I’m still not sure we went to the “right” place, because while everything on the internet says “go to the Houli Flower Farm”, what they actually mean (and show pictures of) is the Zhongshe Flower Market, which is in Houli, and probably very pretty, but reported as very small.

I on the other hand ended up in the Houli Forest Park which doesn’t turn up if you search in English (you can copy paste my Chinese above, or use the link). We had to park a ways out and there were shuttle buses into the park. If you take transit to the Houli Station, it’s less than 1km to walk from the station to the park.

This slideshow requires JavaScript.

The Houli Forest Park is gigantic with displays of flowers and garden styles from around the world. It’s got a bit of United Nations through plants thing going on. There weren’t too many flowers because it was winter, but the garden displays were still fun and interesting. After dark, the large sphere puts on a lights and music show that is visually hypnotizing.

20190113_183841_000-ANIMATION

Kaohsiung

Dome of Light 光之穹頂 at Formosa Boulevard Station 美麗島站
This is the world’s largest public art installation made from individual pieces of colored glass. It also just happens to be in a subway station in Kaohsiung. There’s no reason not to see this stunning work of art if you are in the city.

Pier2 Art Center 駁二藝術特區
I heard about the amazing street art of Pier2 and set aside a full afternoon to visit. I was pretty disappointed at first because, although I found what was clearly a very artsy area, it was much more artist work space than art on display. I enjoyed everything I saw, but I couldn’t understand where all the photos on Google Image search of Pier2 were hiding.

Only after a bubble tea break did I finally figure it out! All the signs point you to the right (if you’re facing the water). However, if you go left, away from all the “pier 2” signs and across the street and around the corner– there are all the warehouses filled with cute artist shops and restaurants!! Along with more murals, crazy street art, and giant art installations. The local street signs and maps of the area were very confusing, but it was worth it in the end.

Food

Before going to Taiwan, I asked people what they recommended I eat. I scoured the internet for recommendations of “must try” foods, and while I did find things that people ate, there wasn’t any kind of definitive “Taiwanese Food” list. Now that I’ve been, I realize that this is because you can go anywhere and eat anything and it’s going to be awesome. There are just too many wonderful variations and local/seasonal limited editions that it’s impossible to compose a full list, but if you are looking for some definitive items: bubble tea (boba), pineapple cake, beef noodles, pork rice, and dumplings. Here’s what I ate, and I can recommend all of it, but if you can’t find it, don’t worry because you can’t miss out on delicious dishes as long as you eat at any non-franchise place.

Taipei

Theif Chen Tea House 大盜陳茶飲 (the name is only in Chinese on Google Maps)
On the day I got my SIM card, I was just wandering around the neighborhood, and happened to spot a sign in the window for smoked oolong rose milk tea. Milk tea and boba (bubble tea) are absolute must haves in Taiwan, and there are lots of chances. The flavors are the fun part. This was made with smoked oolong and rose syrup and it was entirely dreamy! Smoky and dark, floral and sweet, creamy and cold.

20190110_120228

Lin’s Wagashi Confectionery 滋養製菓
Just down the street I spotted a confectionery shop with  fresh strawberry red bean rice cake. A traditional mochi style rice cake with sweet red bean paste, a combination I already love, with the added bonus of a fresh ripe strawberry. Heaven!

20190110_122012

Food Stalls near Taipei Station: not on a map
There are things like semi-permanent food trucks, but not all the way to “night market” status. Walk up, buy some food, walk away, zero seating. My Google Maps history says I got out at exit M5 and headed toward my hostel (We Come Hostel), so somewhere in that area there are amazing dumplings. I got pork and cabbage, good alone but awesome with the spicy sauce ($1.25), and the winner of savory food that day was the pork bun. I thought it was a little plain at first because my first bite was bun and juices, but the meat filling was amazing, tender, and a little lemongrass flavored (.50¢).

20190110_204803

Literally any convenience store:
It’s not only local food stands and tea houses that have food adventures. I got a ginger Twix at the corner store. It’s basically a Twix with a gingersnap core. I do enjoy trying local variants of global brands. If you pop in for a bottle of water, take a look around and see if there’s something unique on the shelves.

20190110_205521

Shifen Old Street
While reading about the Shifen Old Street, I discovered a recommended local delicacy of chicken wings stuffed with fried rice. There is one small shop which takes the bones out of chicken wings and stuffs them with fried rice. It’s absurd and delicious. Walk all the way up (it’s not far) and look for this cart.

Jiufen Old Street
This is a foodie bonanza. Other than the night markets, this was the greatest concentration of interesting foods in one place. I didn’t even have time to sample most of it because I couldn’t eat enough! Of what I did get to try, the winners were pineapple cake and peanut ice cream. Pineapple cake is another super famous Taiwan treat. I did not understand what the big deal about the pineapple cake was until I ate some. I had an idea of western style pineapple upside-down cake, which is a bit like a fruitcake and not a thing I’m very into. The Taiwanese pineapple cake is nothing like this. It looks like a very plain beige square, but holds a taste explosion. The middle is a perfect pineapple compote and the outside is a crumbly rich butter cookie.

The peanut ice cream (above) is actually pineapple and taro ice cream with shavings from a huge block of candied peanut wrapped burrito style. It’s a wonderful mix of sweet, salty, fruit, and creamy. I also tried an award winning nougat cookie. The coffee flavor was rich and well balanced with sweet, salty, and bitter. I understand why it won awards. The most interesting was a kind of thin pork jerky (paper thin) spiced with cinnamon and wrapped in seaweed. I would have never thought, but nori and cinnamon go well together. I mostly ate samples because a lot of the goodies were only sold in large gift boxes, but I’m glad I got to try so many things! Taiwan food is epic!

At the Underground Mall at Taipei Station
Somehow I was still hungry after all that food in Jiufen, so I got some beef noodles and onion pancake for dinner when we got back. The beef noodles are another famous item, and you can find them just about anywhere. It’s nothing different from what you’d expect, beef broth, noodles, beef and spices… it’s just… yummy.

20190111_174244

Taichung

Yizhong Street Night Market 一中街夜市
I chose a less famous and more local night market at the advice of my hostel, and ate so much food! I had fried squid for dinner and candied fruit for dessert. This type of candied fruit was something I first had in China and love love love. I was only sad they didn’t have the tart haw fruit version, but strawberries are a good substitute. While exploring, I kept seeing signs for black sugar bubble tea, turns out “black sugar” is basically molasses. The tapioca pearls are cooked in the molasses mixture and then mixed into the milk tea. SO GOOD!

Across the street from No. 65, Zhongxing Street, Dongshi District Taichung City
While I was hanging out with another ESL teacher and her local buddy, he drove us to a small hole in the wall restaurant. Google Maps doesn’t have the place I went, but in street view, I can see it’s across from No.65. Look for the teal awning, not the red sign. It’s a Kejia restaurant (Kejia are a local minority people) and I ate so many delicious vegetables.

The Uptowner  雙城美式餐廳
The ESL teacher I met on my trip invited me out to brunch at a local American influenced place. I got these beautiful Florentine Bennys, perfectly poached eggs, and delicious sauces with spinach and tomato added. I know it seems strange to go to Taiwan to eat American, but remember I don’t get this kind of food in Korea.

20190114_135523

Miyahara Ice Cream  宮原眼科
While I was looking online for famous food spots in Taichung, the Miyahara Ice Cream factory came up. It’s a top of the line gourmet ice cream and chocolate place that is in the old remains of a Japanese ophthalmologist’s building. Today it has a magical atmosphere that reminds visitors of Hogwarts. The building alone is worth a visit, but since you’re there, be sure to eat the ice cream too. They do sell single cones and cups out front (no seating), but if you come in, you can get one of the amazing 4 scoop sundaes as I decided to do in place of a normal dinner that night.

The 4 flavors I chose were 44% chocolate (light and creamy), 80% chocolate (dark and smokey), black tea and green tea. When they bring your ice cream to the table, they wheel out a toppings cart and you can choose 5. I went for cheesecake, pineapple cake, fruit candy, butterfly and bear cookies. While I was eating, the staff brought by a bonus raspberry flavor fluffy cheesecake dream to taste, so I ended up with 6 toppings. The ice cream was a bit gelato-like, very smooth, and dense, creamy not icy. The flavors were strong but balanced, and there was so much variety in my sundae I never got tired of combining different ice creams and toppings together. Taiwan really is foodie heaven!

Kaohsiung

Liuhe Night Market/Liuhe Tourist Night Market 六合夜市/六合觀光夜市
The night markets are the best place to get dinner if you’re willing to forgo seating (and it’s worth it to eat standing) At this one, I got baked scallop for an appetizer, Aboriginal style wild boar ribs for the main dish, and Chinese style candied sweet potato for dessert (also one of my favorites from China). It was so much fun to see all the foods on offer and to talk with the vendors. There’s less tourism in Kaohsiung, so they were more excited to have a visitor try their food.

Bonnie Sugar 駁二店 (at Pier2)
Another great example of serendipity. I was just feeling a little hungry after hours of walking and taking photos, so I popped into a cafe in the art area. I was rewarded with an amazing fresh fruit tart that the Parisians would be proud of and a carafe of fancy tea with fruit ice cubes. Too posh!

Near the FlyInn Hostel
Kaohsiung is much more industrial than either of the other two cities and there was very little to eat near my hostel, so I ended up with some strange food choices including whatever this chicken thing is and a random place where the old lady called her son out to help me because my dictionary won’t work on the menu. I really don’t know what it was… mystery dinner!

Just goes to show that no matter where you choose – the 5 star Yelp reviewed restaurant or the soup shop down the alley, you’re going to find Taiwan a gastronomic delight.

If you want to end your view of my Taiwan travel here on a high note, I certainly don’t blame you, but I continue to post stories of my physical/mental/emotional limitations during my travels because I want people with invisible limitations or chronic illnesses to know they aren’t alone and that your limits don’t have to stop you from seeing the world. 

Invisible Illness & Love of Travel

In Taipei, a day of temples and a full day tour wiped me out in the warm weather. Far from being “warm winter”, the unusually hot weather and high humidity (25c + 85% humidity is unseasonable) combined with hours of walking and hiking. By the third day I had to cancel additional sightseeing because the body said no. 

In Taichung, I met some fun people to spend the day with, another teacher who in lives Korea and her local friend. The local friend had a car and offered to drive us around and we had a lot of fun taking photos and being silly tourists together, but at some point I ran out of spoons and had no idea how to explain or adapt with these friendly strangers.

Trying to explain a few of my limitations and the accommodations I’ve made for myself (not expecting anyone to do for me, just the way I’ve come to manage my issues) I got a lot of push back from the girl who invited me along. Don’t get me wrong, it was 90% a good day but it was so hard to get her to understand why I was in pain and tired at the end and why I wasn’t going to be up for more the following day. She’s 13 years younger than me and basically said everything in the “you don’t look sick” playbook. I love meeting people and making new friends, I know I had more fun and more experiences with them than I would have alone, I just hate that I have to push myself beyond my limits just to be the slowest one in a group.

In Kaohsiung, going to Maolin and Foguang Shan on the same day was a lot. I got on the road at 7am, hiked all over a mountain for several hours, navigated the bus system on my own when Google turned out be a liar, hiked more at a mountain monastery (so. many. stairs.) and navigated back to town without relying on Google which is frankly crap about Taiwan public transit info. It was a 13+ hr day, and about 5-6 hrs spent hiking the hills and stairs.

By the end, I was tired, and my feet hurt like hell, but my legs were fine. It’s not a matter of being weak or out of shape because the parts of my body complaining (feet, ankles, lower back, hands) aren’t the muscles used to climb. I slept hard and long, and while not fully recovered the next day, I mentally/emotionally felt better than I did after the tour group day in Taipei or the day in Taichung with the other teacher and her friend.

It seems I just handle the challenges better when I’m on my own time table rather than trying to keep up with others. Being on my own still isn’t 100% guaranteed to be “at my pace” because sometimes I still have to hurry to catch a bus or something, but it definitely has less negative impact on my well-being. It makes me a little sad to think I’m just going to have to turn down invitations hang out with fellow travelers on the move, I love meeting people, and I get lonely quite often, but knowing I can achieve my travel goals if I’m patient with myself is something that can help me out while I’m on the road. 

That was my reflection at the end of the Taiwan trip a year ago. I still think it’s very much true. Even just walking to dinner with friends from the office, I struggle to keep up. In Ireland, I could see that some terrains I pulled ahead and in others my travel companion did. I had one good “hiking” day in Korea last fall, but mostly because we all agreed to go super slow and stop often for photos and the weather was awesome. Here in Spain as I write this I can tell that some days I have more or less brain fog, or that my ankles or knees are more or less able to handle the stairs. It’s not fun, but I can handle my body and brain most of the time, even the bad times. The hardest part is the isolation I feel when I get left behind because other people can’t. I ask if you have a friend or relative who is fine one day, but can’t do anything the next, don’t make a fuss. If they are a little bit slow, just slow down, too, but don’t say anything about it. It means more than you can imagine to be included without being made to feel like a burden.

Get By With a Little Help From My Friends

/ Gallivantrix / 1 Comment

I know I publish in a maddeningly irregular schedule. The reality is, this blog is my hobby and not my job, not even a part time one. I actually spend money to run this sucker and I’ve been able to do that for 5 years while never asking for anything from the readers except possibly some likes and subscriptions which are really only for the serotonin boost because I do zero monetizing here.

I have some deeply mixed feelings about the ability and tendency to monetize every possible aspect of our lives, but that’s not what this blog post is about. This is the first time in 5 years I’m going to ask for money, but it’s not for me…

They say that 40% of America is just one missed paycheck from disaster. That rises to 60% for even a small health crisis. I had a medical disaster in 2008 that I’ve alluded to here from time to time, and it made me understand just how quickly a smart, driven, well-educated and experienced person can go from a reasonably good life to being homeless and unemployed. It’s terrifying. One day I’ll actually write that whole story, but I’m still not ready.

The only reason I made it through is because of my family: chosen and bio. People who let me crash, people who let me use their homes to sleep, bathe, cook, and eat in. People who loaned me money or just bought things for me when I needed it: medicine, clothes, food, gas. People who kept helping me for years, even after I got a job and wasn’t in “crisis” mode because they understood that it can take years to fully recover from a fall like that.

One of those people is my chosen-sister, Carla Jones.

20151216_180348_LLS

We met as teenagers back in Tennessee and when I moved to Seattle, she was only a couple years behind me. She slept on my couch for more than a month when she landed, even though she had a job within a week (a job she still has 14 years later) because she didn’t have enough money to pay first and last month’s rent until she got a couple paychecks under her belt. It was a tight fit. I hadn’t yet broken up with my abusive boyfriend (because I was still in that brain fog of denial and guilt), and the three of us were trying to live in a one bedroom apartment while he was trying to turn me against her to retain his control (which I now know is a common abuser tactic, yay). Seeing the way he treated her was probably the biggest catalyst for me to finally escape.

Several years later, when I was recovering from my health crash I needed to move again. I had been living in the attic of an insanely kind and generous family with a new baby and although I had found a job again, I was still not making enough money to rent my own place. I’d been “paying” about 300$ a month to the household I was living in, but I promise that’s a fraction of what any room in a house in Seattle will actually go for. Really, look it up. There’s people renting a couch in the living room to sleep on for 500-600$. It’s crazy.

They were being incredibly nice about the whole thing, and had not given me any kind of eviction notice, just a request that I move on so they could better use the space for their own family. Reasonable! Meanwhile, Carla’s living situation had become untenable. She was living in a rundown basement apartment with a slumlord of an owner who refused to fix anything including the leaks that were contributing to the masses of mold, and an ex-con, ex-roommate who refused to get their stuff out of the apartment.

We decided to pool our resources and move in together. I didn’t have much in the way of money, I was making thousands less than her, but I did have good credit (thanks dad), and the tenacity to spend 3 months searching every apartment for rent in Seattle to find The One. In the end, I found us a space with 2 bedrooms, 2 bathrooms, a dishwasher, a disposal, a fireplace, and a balcony! For only 950$ a month!  My problem? I didn’t HAVE half of rent, plus half of internet, water, garbage, electric, etc… I had taken a shitty phone job expressly because it paid 100% of my health insurance premiums and I was still hella sick.

Despite the fact that Carla also has a chronic illness, she was in a much better position. Her job was unionized, and she couldn’t lose it for being sick. She had a home office, so she could crawl from the bed to the chair on bad-but-not-too-bad days. She had disability insurance that would pay out if she had to miss too much work. She agreed to take the larger bedroom with the en suite bath and to pay the lion’s share of the rent and shared bills.

I honestly have no idea how much money this saved me during the time that we lived together, but I know that I would never have been able to achieve my current dreams without her support. When I left in 2014 to move to Saudi Arabia, she let me pack my things into the front closet, and to leave my furniture, books, tv, art, etc all around the shared space. It saved me the cost of a storage unit at a time when I was sure I’d be returning to Seattle to live again.

On top of the financial help, Carla has been a steadfast emotional support to me since we met. She accepts all my weirdness and all my illness without batting an eye. In many ways, that’s worth even more because there’s no way to measure love.

I could tell you more about Carla’s life, about her childhood poverty, how she lost her mother because of doctors who were too biased against women and poor people to find the cancer until it was too late, about her lifelong battle with extreme migraines and trying to navigate the same biased healthcare system that killed her mother, how she struggles daily to be understood as a person with an invisible illness.

I could tell you how she loves tacos and crazy socks and weird hats and dressing up like a zombie. She is one of the kindest and most generous people you’ll ever meet. She’ll give whatever she has to help others, even when she probably shouldn’t. She’ll feed anyone that comes in the door, and loves to make Christmas stockings full of shiny dollar store junk because everyone should have a full stocking Christmas morning.

She cooks the most amazing food, and I could tell you about every magical birthday cake she ever baked that made me feel loved and special. How one year, while I was deep in a My Little Pony obsession, she figured out how to make the MMMM cake (Marzipan Mascarpone Meringue Madness) because she saw how happy it made me.

I could tell you about her for thousands of words, and hundreds of pages because she is that much a part of my story. For more than two decades she’s been there for everything, and now she needs more help than I can give.

She’s having another flare up that’s causing her to miss a lot of work. She’s not going to get fired, but she could get evicted because landlords don’t wait for disability insurance to pay out. While she’s sick, she doesn’t get a regular paycheck, and the disability insurance is taking an unusually long time to come through. She’s burned through her savings and although I’ve been able to take some of the pressure off by paying a few other bills, there’s just more than I can do alone, however much I might want to.

Today I’m asking in the true American crowd-fund-your-illness tradition, but not for myself: for Carla. If you like my blog (which is free), think of donating to this fund as a way to say thank you to me by helping someone I love. If you have a friend or relative with a chronic illness, and you know what this is like, spare a couple dollars. Every little bit helps. Click the link or button to open a link to the Just Giving page for Carla:

download

I hope that you and your loved ones never have to experience these things, but if you do, then I hope there is a world of kind strangers out there willing to lend a hand, too.

Thank you everyone!

283338_1029369291415_4319378_n

Travel & Invisible Disability

/ Gallivantrix / Leave a comment

I am not a “normal, healthy person”. I have been diagnosed with a wide variety of “low grade” / “high functioning” disabilities. One was actually considered severe enough to get me financial aid and accommodation for my BA studies, but only accommodation by the time I got to MA because the state of Washington didn’t have enough money to give to priority 2 disabilities. Priority 2 or “high functioning” are considered to be people who are strongly impacted by a disability, but still able to care for themselves without outside help like an in-home nurse or expensive medical equipment, and mostly still able to participate in socially economically valued work with only moderate limitations or accommodations. They’re often also called “invisible disabilities” because … “You don’t look sick!”.

I don’t feel the need to list my diagnoses, or defend my illness. That’s between me and my doctor. If you want to learn more about invisible disabilities and how you can be a better friend/boss/family member to people who have them, please read more on the youdontlooksick website. This post is about what it’s like for me personally to travel abroad with an invisible illness and how I deal with it physically and emotionally.

The Background:

Just living my life I try to spend at least one day a week doing nothing, or as close to nothing as possible. I might do laundry or take a shower, or wash some dishes. And somewhere, there’s a “more disabled” quotes because I hate comparing disability or trauma because wtf that shit is relative not absolute, person who is like wow laundry! Laundry isn’t nothing; that’s like 4 spoons, are you kidding??

Image result for spoon theory meme

*Follow this link to read about Spoon Theory in relation to Invisible Disability
If I go more than two weeks without this rest day I get pretty messed up. Again if you can’t imagine, think of how you feel if you miss two nights of sleep in a row. You can still go to work, but it sucks a lot and everything is harder.

Think of my body like a very fuel inefficient car. I get 12-15 miles to the gallon. Average is 25-30, and very fit people are like Priuses… in a lot of ways. You can’t turn a lemon into a Prius with diet and exercise. Even when I’m putting a lot of time and energy into my body, it isn’t going to do much better than about 20-25. So if I spend a lot of time, money, and effort I might be able to reach the low end of average? And then have no time money or energy to do anything else… yeah, I’ve tried it before, special diet, measuring all the food, exercising every day, and it helped me get in better shape, I could do more exercise, I could hike a bit better, I thought “wow this is so much improvement for me” until I went on a short hike with some very physically average people (not athletic types) and was left in the dust…

People say “you can do it if you’re determined enough”, but when you have a disability that limits your metaphorical mpg or spoons, it can take more energy to get to the healthy food and exercise than you get back by doing it. It stops being worth it. If you’re tempted to say “but…” or offer some advice, please, please, go look at the You Don’t Look Sick website first.
Image result for spoon theory meme

In nearly every vacation/travel in my life before the summer of 2018, the trips were so short that even if I pushed myself to the limit of my ability, I could rest when I got home. This summer, I was on the road for 7 weeks and I learned the hard way that is too long of a time for me to “push through”.

The Buildup:

Paris:

Unable to keep up with my friend and her family, I wonder if there’s something wrong with me. I often struggle to keep up and I tend to think it’s because the people I meet on travels are a bit younger and more athletic, but I’m finding I really need more rest stops than the average bear my age and older.

It wasn’t until I was seated at dinner and realized I was struggling to mentally focus on what the kids were saying that I realized how tired I actually was. I don’t know how much is jet lag, how much is the weather, and how much is just my ever decreasing number of spoons.

I think once I’m free to sit and pause for rest and refreshment at my own pace it will be better? I don’t mean to complain (except about the heat) I’m having fun. I’m just worried about spoons.

Belgium:

(after returning from Sunday in Ghent) My feet reached a point of pain that is found only in uncensored fairy tales. I remember in the original little mermaid she felt like every step was walking on knives. Ursula had nothing on this OG witch. We’re talking Bruce Willis at the end of Die Hard levels of foot pain. I honestly expected blood when I took off my socks.

Image result for die hard foot pain
I have a known medical issue in the left one and usually wear a compression bandage when I’ll be walking a lot. I think the right foot was forming a blister under a callous.
My back was almost entirely unwilling to bend. I really puff up and stiffen in the heat, and the more I stand and walk the worse it gets. I’m not trying to be a whiny baby, I went anyway. But it’s not a thing I can push through forever.

I ditched all my Monday plans. You can’t enjoy things if you’re too tired or in to much pain. Instead I woke up around 8 and made myself a Brie sandwich for breakfast and ate the rest of the chocolate (I’m in Belgium, for heaven’s sake) then passed out again until after noon.

Tuesday in Brussels: The high temperature today was only 16C. It was such a relief. I am in denial about how badly the heat affects me. But every time it cools off, I have so much more energy. This is not to say I was filled with energy today, but I went from feeling like the walking dead to merely slightly sore.

I’m having an early evening, more rest maybe another hot bath later on. I feel like such a broken human that I can’t keep going without so much rest. I don’t know why. I know I need to rest when I’m at home. I usually have at least one “do nothing day” a week to keep myself going. Yeah, that’s life with my invisible disability. It’s so hard to do that on holiday, though, I feel like I’m missing out or not talking full advantage and I just have to keep thinking of that night in Thailand when I hit the wall so hard I crashed. I am not giving up on adventure life just because I don’t have perfect health, I’m going to keep living to my fullest, even if that isn’t someone else’s fullest or even younger me’s fullest. I’m going to do self care and be ok with resting and watching cartoons on vacation so that I can really enjoy when I do go out to do things.

The Netherlands:

(Airbnb in Lanaken, Belgium. Nearest “city” Maastricht, Netherlands.)
It turns out misophonia sound triggers are a real thing for me. I had them in Saudi but was so emotionally wrecked there from other problems that they weren’t a huge change from my daily state of mind.

Related image
It happened to me in Korea this year where a produce truck came and parked near my house and just left his loudspeaker going. I went from annoyed to panicking, my heart rate soared and I couldn’t think. I tried closing all the windows but the sound was too loud. It isn’t just volume, I listen to rock and roll super loud and love it. It’s about not being able to escape. The sound is an invading force, it’s attacking me and the flight/fight/freeze response in my Amygdala is triggered. This one is especially “fun” because it could be related to any one of my diagnoses, since it can be a symptom of several, but I’m not really interested in fighting through more doctors to find out since every visit to a doctor is a fight to be believed and treated. The cost/benefit of seeking help is a thing we have to consider very carefully when we have limited energy to invest.

Anyway, here I am in my Airbnb making coffee and reading Facebook, and the church bells start. Normally, church bells ding for the hour and then stop, but this day they don’t stop and suddenly I feel it starting. I jam my fingers in my ears and start humming to try and drown out the sound and every time I check it’s still going. Not even a tune, just ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding ding…

Then I’m just standing in the kitchen fingers in my ears trying to do parasympathetic breathing to bring my amygdala under control and I realize that I’m in terrible fear of becoming too broken to function.

The Breakthrough!

This is why the obstacles are hitting me so hard emotionally, of course heat and culture shock are contributing factors but this has been so much harder than previous challenges emotionally and I couldn’t figure it out.

It has been like peeling an onion to get inside this thing. Yes it’s too hot, yes there’s culture shock, and the nature of the obstacles themselves, the bathroom is too far away from the bedroom, the transit is unreasonably difficult, and the conservative old white colonialism-is-great attitude in the Netherlands was seriously harshing my groove especially compared with the vibrant multiculturalism of Paris and Brussels. And finally today I got to what I really hope is the gooey center of this Gobstopper of ick, the fear of being too broken to function, fed by all the above issues.

But this is it. I’m afraid there will come a point when I can’t manage. When my dream, which I just got a hold of these past few years, will slip away as my body and mind betray me and I sink back into a life of mere survival. I did that for so long: find the only job that you can manage with your existing disabilities, lie about them so you don’t get fired, spend 90% of your free time resting and hope your friends and family don’t give up on you.

Image result for brain fog meme

The Resolution

“What can I control” is one of my lessons from Saudi. Life is full of crap you can’t control, expat life maybe more so. KSA life? Woah. The point is to survive in that kind of mess you need to focus on the things you can control to maintain balance against the things you can’t.

In my case, that means a lot more “me time”. I was worried going into this summer that I wouldn’t get that. Even slow days involve a lot of variables and people I can’t control. I’m staying in other people’s homes. Even with a private room, there are elements I can’t control.

Image result for saving spoons
Everyone understands how much it sucks to get sick on holiday, to feel like you lose precious vacation hours to illness but also most people think you should just push through if you can. I find I don’t enjoy things as much if I’m feeling like crap. I do what I can to prevent getting to the point I can’t do things, and sometimes that means spending hours resting when I don’t feel sick yet.

I’d love to be normal bodied. I’d love to be able to just go and do. I’m not saying disabled people don’t have worth or can’t enjoy life, but I don’t know anyone who wouldn’t rather have full functionality. It doesn’t benefit me to spend so much of my life resting except that it allows me to live the other parts more enjoyably.

I remember how devastating it was when I was told I was going to be sick forever and the long list of things I couldn’t do. I was so relieved when that turned out not to be as bad as the doctors told me, and I’ve been trying so hard to accommodate myself, but as I get older, my symptoms are getting worse.

Every year my body’s response to the heat it getting harder to bear. It went from ‘getting slightly swollen feet and needing more rest’ to ‘watermelon feet that stay swollen all summer and not being able to be outside for more than an hour before I just start shutting down’. If you don’t have a disability, you might not realize what ‘shutting down’ looks like. Watch a tired toddler. Or imagine how you feel after a very intense weekend of high activity and low sleep. Yeah, it can take ableds 16+ hours to get as tired as I get in 1-2 hours of high heat.

I tried to keep up with a faster walking woman I met at the brewery and got lunch with and had to quit because aside from the fact that I was feeling like I was at the gym instead of on holiday, I got a blister after just 15 minutes of walking at her pace. Yes, part of that is being “out of shape” but if it had been cooler weather I could have done better, I know because I do better with physical activity under 18°C. No hot yoga for me.

What is the worst that could happen? I think Thailand showed that. I ended up so thrashed I couldn’t do anything. Instead I have to try and make sure I’ve got the spoons to do the things I was most interested in or already paid for and I let go of the rest if conditions aren’t right. I’ll still do and see more than I would if I didn’t go at all.

The Aftermath

By Hamburg I came to terms with the fact that it is ok to just relax on the sofa with the windows open and enjoy the breeze from my bed. I gave myself permission to be comfortable without feeling guilty for “wasting opportunity”. I don’t have to go someplace less comfortable, that requires more clothes or money just because I’m in another country.

By Copenhagen the weather had returned to temperatures that were no longer destroying me and I found that I had the energy to get up at or before 9am and keep going until midnight or later for several days in a row. Even with better weather, after about 4 days of this I really wanted a rest day, but my friend felt very left behind because had to return to the Airbnb to long into work every afternoon/evening, so decided to push through to spend one more day with her. It wasn’t ideal for my health, but it wasn’t a catastrophe either. I was able to take my rest day when I arrived in Sweden.

Sweden was the best environment for my body and mind. The weather was great – cool and lightly rainy (some heavier rain, but I was lucky to always be inside or driving for it). My pain was mostly gone and my energy was way up. If it weren’t for the record of notes I kept in earlier parts of the summer I might have thought my memory was playing tricks on me in regards to how bad I’d actually felt before. How can a body go from being so inoperable to being mostly fine from something as simple the weather? I still don’t know, but it’s becoming increasingly obvious that I need to do my best to avoid high temperatures, and to accept that my limitations apply to long term travel, not just when I’m at home. It turns out napping on vacation can be pretty cool, too.