disability

The Sights of Tours

/ Gallivantrix / Leave a comment

Although I only spent 5 weeks in the city of Tours, France, I feel like I managed to squeeze in quite a lot of sightseeing around my French classes and cheese eating. In an attempt to organize my adventures there, this is the 2nd of 4 posts about Tours and it features attractions which are close to the city center, such as museums, gardens and interesting tourist attractions.

Musée Compagnonnage (The Companion Museum)

This was the first museum I visited in Tours because it was right next to my tram stop. I don’t know what I expected from a place called the Companion Museum, but this was not it. The Companionship (Compagnonnage) were any and all artisans and craftsmen who made things with their hands and then passed the knowledge of their crafts through apprenticeships. As you may imagine, that’s most of professions. It’s something between a secret society and a very strong union. In fact, given the amount of masonic imagery, I’m surprised to find that the museum denies any connection beyond the coincidence of the compass and square.

According to their own legends, the Compagnonnage dates back to the construction of the temple in Jerusalem, known as the “Temple of Solomon”, in the 10th century BC. The colossal project, under the direction of the architect Hiram, would have been led by Soubise and Jacques. Different legends also make these last two monastic and chivalrous characters. Salomon, Father Soubise and Maître Jacques are the 3 legendary founders of the Compagnonnage. However, there’s no archaeological evidence of the Compagnonnage until the 13th century. Incidentally, the Free Masons are not found until the 18th century so if they are linked, the French did it first.

The Compagnonnage includes any industry in which people work with their hands directly to produce things. I was going to try to list them, but the museum website takes a whole page to do so. It’s… a lot. Excluded careers were things like merchants, academics, doctors, architects and engineers (presumably the later because they design things rather than build them. Carpenters and stonemasons, people who implemented architectural and engineering designs, were absolutely included in the Compagnonnage.)

You can read more about the historical ups and downs on the museum website (thanks Google Chrome for auto-translate), but it went fairly strong until WW1 dealt it a near fatal blow. It didn’t really recover until after WW2, and it’s worth mentioning that although they claimed to welcome anyone wishing to improve in their profession, they didn’t agree to admit women until 2004(!) and didn’t actually accept one until 2006. Even though many of the trades historically included into the Compagnonnage were industries which had many women workers including sewing, weaving, laundry, and baking, it seems the society was about more than just teaching skills and protecting workers. Quelle surprise! (by the way, all of the art pieces below are sugar and pastry!)

Despite the overwhelming presence of misogyny throughout the history of Western civilization, I still enjoyed seeing the craftworks and tools of the various trades included in the Compagnonnes. I also believe that the centuries-long tradition of protecting the rights and wages of these workers has likely influenced the French cultural value of workers’ rights and collective bargaining. Did you know that striking is protected under their constitution? That not only can they not lose their jobs for striking, their employers must continue to pay them during the strike? That’s a big accomplishment for the same culture that produced Versailles.

The Hôtel Goüin

This is what happens when you don’t plan in advance and just wing it. You get weird stuff. This hotel is on my walk from the tram stop to my school and I got curious about it, and noticed it’s opening hours were only on Wednesdays and Saturdays. I looked at it very very briefly online and saw that inside was an art gallery with rotating exhibitions. I thought, well I like art galleries, and it’s free, so why not? 

First, let me say, I do think it’s worth it to poke your nose into any free museum in your vicinity. Heck, even any museum under 10$ is likely to be worth a stop to me. I have gone into unexpected museums before, things I ran across that were adjacent to another stop on my journey, and it’s roulette. Also, since I had totally failed in the planning phase of my stay in Tours, I was eventually bound to suffer the slings of ‘wing it”, and only not mind too much because a) it’s 5 weeks, and b) my goal in Tours was not sightseeing – it was French Living.

If you or someone you know is headed to Tours and you happen to be in Old Tours on a Wednesday or Saturday, sure, drop in. However, there’s no need to put it on your bucket list. This summer, the Olympics are being held in Paris, so all of France is in Olympic fever. The Hôtel Goüin being no exception, they decided to offer an exhibition on the Paralympics. In large part, the exhibition was mostly very beautiful and inspiring photographs of paralympic athletes, but the upstairs (no elevator, btw, way to accommodate the athletes being celebrated!) contained not only documentaries, but interactive displays where visitors could “try on” a disability and attempt a sport. … I don’t even know what to write about that, other than, yes, I’m sure that’s what they were for because a museum employee told me about it and smilingly encouraged me to try.

If you are not cringing with me, or are wondering why I am, please check out some videos on YouTube by following this link.

The Musée des Beaux Arts

The third and easily most impressive museum I visited was the Tours Museum of Fine Arts. You can go to France and not visit an art museum, but why would you? I spent about 2.5 hours inside the museum of fine arts. I only took photos of things that struck me in particular, but it was room after room of beautiful stuff. I love looking at oil paintings up close. There’s some things that no photograph can ever capture, the quality of light, the ability for a part of a painting to seem like it’s glowing, the way the brush strokes move the eye, the size (both the enormous paintings and the tiny details). Seriously, even gallery-pro photos rarely do them justice, but if you want to see the museum’s own photographic collection, click here. 

Nonetheless, I cannot paint a picture of a gallery with only words, so I hope you enjoy the pictures I took and that maybe it can inspire you to visit an art gallery in or near your own town. Galleries often have wide collections, and even trade around highly desirable artists so that everyone can get a chance. The Tours museum is not anything so grand as is found in Paris, Lyon, London, or New York, but it still had a Rubens, a Rodin, a Rembrandt, and a Monet alongside many lesser known but still very talented artists from the 14th to 21st centuries.

Garland of flowers and trompe l’oeil, Jan-Philips van THIELEN, mid 1600s
Anonymous copy of the Mona Lisa painted mid 1500s
Mary Magdalene, Matthieu FREDEAU 1642
The Virgin, the Child Jesus and Saint John the Baptist, Eustache LE SUEUR, early 1600s
Portrait of a woman in spring, Workshop of Nicolas de LARGILLIERRE, early 1700s
Diana and her companions resting after hunting, Louis of BOULOGNE 1707
Allegory of the Times, Wealth, Power and Love; Claude VIGNON, mid 1600s
Nude study, Léon BELLY, 1857
Sarah Bernhardt in her Belle-Ilea garden, Georges CLAIRIN, late 1800s
Leaving mass on Easter Day in Labastide-du-Vert, Henri MARTIN, 1915

I recently had to try and explain Queer Coding to some folks and I found myself returning to YouTube to shore up my own understanding and references. One of the videos I watched pointed out that a lot of artists who painted under the totalitarian glare of the capital “C” Church used secret signs in their paintings of religious icons, and imagery out of Greco-Roman mythology to be able to portray scenes of queer love, romance, and eroticism that they could otherwise have been turned over to the Inquisition for. It was a perspective that made looking at many of these paintings from the 14-17th centuries much more entertaining.

I had to put this painting on its own. This is “Panoramic view of Tours in 1787” by Pierre-Antoine Demachy. When I turned a corner and saw this view, I was absolutely stunned because that’s the bridge I ride the tram over every day too and from school and my apartment. It’s actually fairly easy to regognize the major landmarks like the Cathedral on the left, the large white buildings with black roofs along side the road which is the Rue National (those are still holding shops today), and the Tower of Charlemagne as the tallest structure on the right. The artist was able to make the buildings in the distance look larger than they really are, and there are too many trees and new buildings for me to exactly replicate this view with my camera, but I gave it a go.

The lower floor of the museum is where the rotating and seasonal exhibits live. When I visited, it was an exhibit about the history of women called “THE SCEPTER & THE DISTAFF. BEING A WOMAN BETWEEN THE MIDDLE AGES AND THE RENAISSANCE“. Although it did have some generalizations, it mainly focused on France and it’s neighboring European countries and offered examples of illuminated manuscripts and artistic renditions of women as visual aids to the historical records. Anyone who has studied the history of women in the West will be well aware of the issues, but for those who are not, may I recommend the recent re-translation of Simone de Beauvoir’s eminent work, The Second Sex. If you’re on this website, I assume you like to read and so recommend the book, but there are plenty of YouTube videos reviewing and analyzing it. I don’t claim it’s the authoritative book of feminism (it’s got issues), but she does a very good job of assessing the historical condition of women in Western culture.

After I finished inside the museum, I headed outside to look for the pickup spot of the hippomobile. I didn’t make up that word. “Hippo” isn’t just a big African water mammal, it’s actually the ancient Greek word for “horse”. “Potamus” is Greek for “river”, which is how the hippopotamus got it’s name – river horse. Thus, the hippomobile is simply an ancient Greek way of saying horse-car, or horse drawn carriage. I don’t know why the one in Tours uses this name instead of the wildly more common French word “calèche“, but the first time I saw it on the website, I fell in love with the word and I refuse to relinquish it.

The internet further told me that I should catch this wonderful ride in front of “Fritz the Elephant” outside the Musée des Beaux Arts. When I arrived at the museum, a sign outside advertised the ride as picking people up at Fritz the Elephant as well, yet by the time I finished my museum tour, I still had no idea where (or really what) Fritz the Elephant was.

The Story of Fritz the Elephant

In my mind, Fritz would be a statue, or maybe a mural, adjacent to and clearly visible from the museum. Upon exiting the museum, I took a quick walk around the gardens (lord do I love the way the French put gardens everywhere). I found a little food stall, and a playground, and a trombone quartet (very unexpected), but still no elephant. Finally, I went over to a building off to one side that looked like it had been (or might still be) a stable. Lo and behold, there was Fritz in all his taxidermized glory, sheltered from the elements by a roof and plexiglass.

TW animal cruelty: because western civilization didn’t figure out animals had feelings until really recently and this is a story out of history. But also, there’s a silver lining at the end? If you want to avoid it, skip to the Hippomobile section where the animals are treated with kindness and respect.

Around the turn of the 20th century, the Barnum and Baily’s Circus was at its height. You may have been exposed to a glorified version of this with a singing Hugh Jackman, but the real circuses relied heavily on exotic animal shows, and the treatment and training for those animals, including elephants, was cruel and violent. Fritz was in captivity for 35 years, which would have been most of his life considering Asian elephants only live into their late 40s. He was purchased by Barnum in Germany in 1873 and shipped by sea to the US. Sea voyages were especially hard on animals then, since they took a long time, had terrible conditions, and there was no medication available to help the animals with anxiety or seasickness. Many elephants died on such voyages, including several of Fritz’s companions. 

In 1901, the B&B circus headed over to Europe for a continental tour. While in Bordeaux in May of 1902, Fritz began to show signs of agitation and aggression, and so was chained to two other elephants to keep him in check. When the circus reached Tours in June of the same year, the circus offered a parade through town as a way of attracting visitors to the shows. Though the parades were difficult, they were also often the only time the animals had any real freedom of movement. 

For reasons unknown to history, Fritz became enraged during this parade. 35 years of captivity and violent treatment cannot have been without consequences, and whatever the reason, Fritz freaked out and terrified all the local parade attendees. The handler was able to get Fritz under control and on the ground (laying down), but director on site still ordered the elephant put down. As horrible as that is, the method of execution was worse, and yet it’s inhumanity may have been the reason why Fritz became such an important historical symbol. The method used was strangulation with chains and rope. It took more than three hours for Fritz to pass. 

The remains of Fritz were sent off to a naturalist for preservation, and within 8 months the skeleton was installed at the natural history museum, and the taxidermized hide was placed in the former stables at the Musée des Beaux Arts. The press latched on to the story, framing Fritz as a gentle giant and a victim. Wild speculation abounded as to the cause of his rage. Some posited it must have been a lit cigarette burning him, but there is no evidence to support this claim. Regardless, Fritz became a beloved mascot of the city of Tours, and the tragic incident became a pivotal talking point for a growing movement acknowledging animal suffering and animal rights. 

As of my visit, more than 100 French cities ban the use of wild animals in circus shows, and the French government at the federal level has decided to completely ban all use of wild animals in travelling circuses by 2028. If that sounds like a small and late change, you aren’t wrong, but France isn’t behind the times. Most developed (rich) nations are still in the process of passing similar laws, often in patchwork and piecemeal ways, and of course developing nations are struggling enough with human rights, that it is difficult to get them onboard with eliminating animal exploitation which can mean the difference between feeding their own children or not.

I have talked about ethical animal tourism before and how important it is to patronize businesses that prioritize animal welfare because that needs to be seen as a viable economic model in order for more people to follow suit. 122 years have passed since Fritz was strangled to death on the streets of Tours for simply being a wild animal, and that seems like a long time, but we were still going to circuses with mistreated elephants when I was a kid. As short a time ago as 2008 I watched a tiger jump through a ring of fire in China (I didn’t know that would happen when I sat down for the show). Kids on the streets in Africa and SE Asia use baby monkeys they took from the mothers in order to lure tourists into taking and paying for cute selfies. There are still plentiful places that offer swims with captive dolphins or rides on captive elephants as tourist attractions. We love looking at and interacting with animals, but all too often that love is toxic.

Horse-drawn carriages are another great example. I’ve been to developing countries where the horses are near starved, dehydrated, and forced to work without a break in the scorching sun. I recall at one point in Egypt seeing a sign near an area with shade and water troughs that an animal welfare organization had fought to have installed for the horses which carried tourists around the ruins. It’s hard to convince a person who lives in a state of desperate poverty that they need to prioritize an animal when their own children may not have enough. A shorter work-day means less money, and is a big barrier to enforcing any kind of animal rights. Thus it’s up to tourists who take the rides to express a firm requirement that the animals be treated well. Stop paying for rides with badly treated animals and the drivers will change.

Please check your sources. Look for the zoos that have habitats of comfort and preservation (lots of zoos these days are changing their habitats to protect and serve the animals, and they rely more on rescuing animals that wouldn’t have survived in the wild or breeding programs rather than capturing healthy wild animals). Look for animal interactions that protect the animal ambassadors. They exist. Animals that for one reason or another don’t mind interacting with humans on their own terms can be great species ambassadors and inspire humans to better protect the environment, but we have to respect their boundaries and needs. Even the pet cafes can have better treatment of their animals, such as creating spaces where the animals can retreat when they want to, and having highly trained staff around to make sure the animals are safe and comfortable at all times, even if that means disappointing a customer.

We may be past the era of such tragedies as happened to Fritz, but we still have a long way to go to restore the balance between our love for interacting with animals and our ability to respect them.

The Hippomobile

Thankfully, in France, the labor rights are strong, even for horses, and these chevaux have restricted work hours, mandated breaks, days off for extreme weather, and nice digs.

“Our equine friends are given a day off every Monday. The horses that draw carriages in the morning are replaced by another set in the afternoon. The animals take breaks in the shade of the magnificent cedar tree outside the Museum of Fine Arts. The carriage driver decides which route to take depending on the time of day, weather conditions and/or the horses’ energy levels. When the weather is unfavorable to horses, the timetable may be modified or suspended.” — quote from the Filbleu website regarding this service

I joined the first afternoon tour (3:30pm) and although I was a bit disappointed that the weather plastic remained down (it had rained heavily a few days before), I was seated right at the back and could look out the open rear for clear views. I didn’t see a lot of new things because by this time, I’d lived in Tours for over 3 weeks and had done a lot of exploring on my own. However, Old Tours is endlessly charming and the weather that day was simply stunning, so for the price of transit ticket, I happily enjoyed the clip clop of horses hooves while I admired the scenery. 

The Cathedral of Saint-Gatien

This stunning cathedral is right next door to the museum and makes an easy side trip. I may have a love affair with gothic architecture and stained glass. I can’t seem to stop going into cathedrals which are all generally of a similar blueprint, and staring in wonder at the scale and scope of human achievement in terms of really big, really complex, and emotionally moving buildings. I took far too many photos of the different types of stained glass, but I admit that I’m more interested in the colors and shapes than I am in the catechism represented therein, so I can’t tell you what they are supposed to be depicting (though there were dozens of signs explaining each window inside the church).

When I was in the Fine Arts Museum, I found a painting of the cathedral, and did my best to replicate the angle in modern photo form. It may be a silly American thing, but we simply aren’t used to buildings which have stood for centuries, and despite knowing how old the building is (800 years), seeing a 200+ year old painting of the cathedral made it’s age somehow more real.

While I was in the church, the trombone quartet that I had found in the gardens outside the museum showed up to practice with the organist. I love listening to the giant pipe organs! It started out quiet enough so you could hear the trombones, then the organist pulled the stops out (that’s where that phrase comes from, right?) and wham!

The Botanical Gardens

Another thing to love about France is the ubiquitous nature of nature. I mean the public gardens. Although what the French call a garden may be anything from a highly cultivated botanical display to an asthetically designed artistic movement, to a grassy place with a water feature, they are all clean, safe, and well maintained, and above all free to the public.

I wrote about my three gardens in Paris earlier this spring, so while experiencing the long weekend and excellent weather in Tours, I decided to pop in to the Botanical Gardens. I was not disappointed. The bus lets passengers off right at the main entrance to the gardens (although there are multiple entrances because it is such a huge area of land). I started by walking to my right into a maze of botanical specimens. The plants are arranged in pleasing beds and trellises and I suspect at least part of it is in bloom in every season except winter. There were three paths with three different points of view and experiences, and at the far end sat a grand glass greenhouse. Unfortunately, that was closed during my visit, but it was a fairly small part of the overall parc.

As I turned around and headed back towards my entry point along a different pathway, I was treated to entirely different scenery and the sounds of very vocal frogs. I managed to sneak up on one in the water feature and snap a photo before he plonked into the depths. I walked for a while simply admiring the plants and small streams, watching families and couples enjoying picnics in the grass, and then suddenly I came upon the menagerie. Here in the middle of this garden were a small number of animal habitats. I recall seeing the same thing in the Jardin des Plants in Paris and being generally surprised that any free-to-all style park could afford the staff and upkeep for that. 

It is by no means a full zoo, but I feel like it added a layer of beauty but also entertainment and diversion (especially for children). There were some wallabies, peacocks, flamingos, turtles, tortoises, and a lot of farm type critters (chickens, geese, ducks goats, rabbits, and even a pig). Most of the animals were fenced away, but there was a mini-farm where people could go in and get a bit closer. 

At the opposite end, there were two playgrounds with equipment for children to climb and play on, and still more beautiful lawns of grass for people to picnic and nap on underneath the enormous sprawling trees. I left the park feeling tranquil and refreshed with the satisfied feeling that my last weekend in Tours was extremely well-spent.

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.

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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:

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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!

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Travel & Invisible Disability

/ Gallivantrix / 1 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??

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*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.
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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.

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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.

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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.

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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.

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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.