Je Suis Arrivé: Senegal First Impressions

I’ve been in Senegal for 2 weeks. I’m about to lay down some solid developing nation meets first world privilege complaining, but despite all that, I’m still glad I came here. It’s been a REALLY long time since I had to adjust to a new country to live in (vacation is not the same, because you get to stay in temporary housing and explore and have fun while knowing your safe and comfy bed is waiting for you at the end of the trip), and besides – no vacations during COVID! More than that, adjusting to Korea was very different than here, it was almost all culture and language barrier based because the standard quality of life in Korea is overall quite high. This reminds me more of learning to adjust to China or Saudi, the main 2 differences now are: I’m over 40 and I crave a basic level of creature comforts that younger me was more willing to do without in the name of sparkly new adventure – and this is objectively less developed than either of those places. It may in fact be the least developed part of the world I’ve traveled to, and that’s not an insult, it just means as a white American lady I didn’t have this perspective. It’s good for me, stretching me outside of my complacency and comfort zone (again), so I don’t regret it. I’m not mad about the conditions here, nor am I demanding unreasonable levels of comfort (clean, safe & accommodating my health). I just want to be honest about what I’m experiencing here, and how it makes me feel.

Getting There Is Half the Battle?

Arriving was not actually difficult. A long flight – 3 flights – but nothing a regular international traveler can’t handle. Flying in over the Sahara was fascinating. I could see the landscape change from endless sand to green farmland. There’s the jet lag package (fatigue, dehydration, swollen feet, etc), but I had a whole day in my hotel to rest before orientation. I had arranged an airport pickup with the hotel as well. So far, so good. The program is covering all those costs (assuming my expense report is accepted). The drive from the airport was looooooong, almost 2 hours. The main highways here are fairly well kept, but once you get off the main drag, the roads are not just dirt, but the dirt that remains after badly laid asphalt has cracked and eroded from flooding. There were potholes that could be kiddie pools on the road my hotel was on and I have to say it surprised me to see that this was the norm in the ritzy part of town, and made me wonder what the rest of the city looked like.

The hotel was nice, but I had forgotten to think about things like a mini fridge or a kettle, and there were no shops nearby anyway, just beachfront restaurants and an American imported goods store because I was staying in the fancy part of town near the Embassy. I thankfully have had experience with finding and using local delivery apps and quickly got my first meal delivered to my room (Dakar Food Delivery if anyone needs it). I was also a bit sticker shocked by the prices, but it seems only the expensive restaurants can afford to do delivery. A meal was costing me 10,000-13,000 CFA or 15-20$ USD. I know Americans think that’s a good deal for delivery food, but it’s wildly cognitively dissonant to be in a place that is so underdeveloped and also costs that much. Plus, I have a lingering “former poor” brain function that gets activated when I’m under stress so it feels insanely opulent to eat delivery food 2x a day for a week, which is basically what I did minus 2 lunches at the Embassy. For comparison, my Embassy cafeteria lunch was 4,000 CFA about 6$ US. I survived by reassuring myself that I was still well within the average daily food/transit allowance that is included in my budget, though I now better understand that a person eating at Western style restaurants and taking a taxi (buses are not recommended for expats for safety as well as comfort reasons) could actually use the full budget allotted to us. I expect when I’m comfortable enough to actually start taking taxis to explore other parts of the city, I’ll need that budget, too.

Post Arrival Orientation

We were hosted at the US Embassy for a 3 day orientation from Wednesday Oct 18-Friday 19. The orientation was a good way to introduce us to Senegalese culture because nothing started on time or went according to plan. (I said there would be complaining, but it’s not helpful to think of cultural differences like this as better or worse. I honestly think the number of cultures that place a high value on timetables and deadlines is much smaller than those that are more … flexible. It’s just frustrating to be raised in one style and have to live and work in the other). The policy on Embassy provided drivers changed but no one told our coordinator until the first morning, so while I could have easily walked the distance to the Embassy from my hotel, she had me ask the hotel to call a taxi and then also called the hotel herself to confirm. I have to say that while I found the whole process frustrating and confusing at the time, I do appreciate the lengths she went to that morning to make sure we were all safe and comfortable. It’s not her fault that my comfort level is directly linked to my ability to control my own environment (yay trauma responses!) so waiting around for ages and relying on other people to tell me what to do or how to do it or even do it for me is deeply anxiety inducing to me. I walked the remaining 2 days.

Getting into the Embassy is an ordeal if you don’t work there. One at a time, we handed over our passports in a little secure bank teller style window and got a visitor badge in return. Then again one at a time, we entered the security screening room where we handed over all electronics (including charging cables!) and for some reason also my nail clippers and umbrella. Even the TSA lets umbrellas through security. All our banned things were placed in a numbered box, we were given a token with the number on it and then a fairly standard x-ray for the bags and metal detector portal for us. Then we walked across a courtyard into another building where we again had to pass through a metal detector, have our bags visually examined and record the number from our token on a visitor log. We were also limited to only the front area (the American Center, the meeting room, and the restrooms) unless we had an escort, and our coordinator could only escort 4 people at a time, so had to get help when it was time to take us to the cafeteria. Somehow the free English language program that they run here is inside all this security, and local Senegalese people who want to participate have to go through an application process and pass through this kind of security every time they want to come to a class or event. It does make me kind of glad that it’s not my primary base of operations, though I am sure I’ll go back to do a guest lesson or something.

I enjoyed meeting everyone in the orientation. There were only 2 of us Fellows (we are the older, more experienced teachers… grizzled veterans of expat life) and 6 Fulbright English Teaching Assistants (ETAs) who are all adorable 22 year old Gifted Children™ that just graduated from their BAs and all speak fluent French. Only myself and 2 of the ETAs are stationed here in Dakar, the rest are scattered around St. Louis and Thies. There were also a metric ton of presenters, but since there was zero printed or electronic materials (beyond the schedule which as I mentioned was not followed), I don’t really know who all of them were and remember even less about the details of the programs they talked about. I’m trying to get it in written form, but it’s hard especially as our full time Regional English Language Officer (RELO) isn’t here yet and the deputy (our faithful coordinator) is trying to do all the work on her own.

People I remember well – the press officer and cultural officer were both fun to talk with mostly because they were also new to Senegal and more relatable to me in terms of common background and interests; the HR person who gave us our cultural lesson was awesome (Betty Hubbard, which sounds SO white, but she’s really an African woman with a lot of experience in the US and several African countries, and was delightful, I wish I had a good photo of her, but I only have what the embassy emailed me, which is mostly us). The guy who runs the largest English Club network made a good impression simply by virtue of his enthusiasm, but I was a bit sad that I probably won’t do much with their organization (although he has ‘threatened’ to invite me to come and give a guest lesson) since it is for k-12 ages and I’m going to be spending most of my time with the University. Other presenters were … not used to presenting. Several had classic “read the slides verbatim” or monotone voices. Almost all the Senegalese spoke so quietly that even at the other end of a small conference table, I struggled to hear them. It made me want to create a workshop just for them to be better presenters, an idea I may pitch to the Embassy later on.

Health & Safety

There was a security briefing, which we also got in the EPIK orientation in Korea, and those are almost always extreme, but here I’m not so sure. Things like ‘motorcycle thieves’ people who ride double on a motorcycle so the passenger can snatch bags off pedestrians and the driver speeds away are apparently very real here, such that even locals have warned me to wear my backpack on both arms or at very least, move it to the side away from the road. Don’t carry more than your money and empty shopping back into open air markets (regular brick and mortar shops are ok). Don’t walk after dark alone. Don’t hold your cell phone too loosely or someone might snatch it (motorcycle thief style). Don’t use ATMs on the street, only inside a guarded building. But also, say hello to everyone in your neighborhood, greetings and inquiring after wellbeing are crucial to being recognized by the people who might help you if you’re ever in trouble. People who keep to themselves are left that way.

There was also a health briefing from a nurse who instilled in us the very real fear of Senegalese water if nothing else. They also talked about soaking any fruits or veg you don’t peel in a diluted bleach solution and rinsing with bottled or boiled water. I’m actually not sure what her policy on dish washing is, but I’m using the tap so far, just make sure it’s all the way dry before I put food on it? I have already mentioned my extensive vaccination regimen and of course my weekly anti-malaria pills, so I was fairly well prepared. I figured out how to get smaller (1.5L) water bottles delivered to my hotel, but I’m still working on proper water delivery. I’m going through 2-3 liters of water a day here, so it’s thing. Maybe when I get my “real” housing I’ll be able to do a night boil for the next day’s water, but so far that’s been fairly impossible. The nurse also said that we would all definitely get diarrhea (yeah ok, gross, but this is a very real issue travelling to places with massively different bacteria). The ETAs kind of laughed it off until the older of us were like, no, she’s right, this isn’t a thing you avoid, it’s a thing you minimize and prepare for.

I hoped my globe trotting stomach was well equipped but I still had some antibiotics my pharmacist prescribed to me before I left the US for this exact reason. I have only had bad travelers diarrhea once in my adult life, and that was my first visit to Egypt when I got so sick I could not even keep down water. I remain hopeful that was a once in a lifetime event. My issues in Dakar were comparatively very mild. The first bout passed in a day, and I thought I was free and clear, but then it came back and lasted and lasted. Part of the problem was a lack of ability to eat gentle food. I tried to order things like a labneh (similar to yogurt) on pide (like a pizza dough but oblong) and plain rice or plain chicken, but it was difficult. I only got to go to a grocery store when I moved to a new “hotel” after my first week. Then I ate yogurt, bread, bananas, rice and oatmeal for 2 days before I gave up and went to the pharmacy for some Imodium.

Phone: Connection, Translation, Maps and More

I don’t know how I lived in China and Saudi without a smartphone. I know I did it, but for the life of me, I am baffled. I walked literally everywhere in China with my little pocket dictionary and took months to learn how to properly use the public transit system on my own. I used Wi-Fi on a tablet to pull up maps in Saudi, but mostly I only had a company driver to take me places. During my travels from 2015 on, it seems like having access to a local Sim card and internet was essential to getting around, navigating language barriers, public transit, shopping and everything else really. I like having data as soon as I land. I often get it in the airport or at a shop near my accommodation on the very first day. In this case I had deliberately not taken care of getting my own SIM card because it was on the schedule for the first day of orientation that we would do it as a group. I decided to go with the group because maybe they will be more help than I could have been on my own. No.

First we went to an Orange kiosk (Orange is a telecommunications company in this part of the world), which did not sell SIM cards (I feel like this could have been ascertained ahead of time). When we finally got to the store itself, they collected all our passports and had us wait. The store actually closed with us inside it, and finally they said that they had no SIM cards that day, and we should come back tomorrow. When we returned the following day, we had a better idea of what to expect, but we still got a bit of runaround, being told to go out to a different location to get the SIMs. I suspect they simply didn’t want to deal with a large group at the end of the day. Which, I sympathize with. I can think of several ways to have done this which would have made life easier for everyone including the shop employees, but it’s a learning experience. 

In addition to our fearless deputy RELO (a local who has worked at the Embassy for many many years), several of the French speaking ETAs got involved in trying to solve the issue, which also resulted in crossed wires. We went out, we came back, we waited. Finally they began to issue us SIM cards. They cost 500CFA (75cents US) and are connected to our passports, but that’s normal in most countries that aren’t America. It took a while to get everything sorted out, finding our numbers, loading the Orange app, etc. It was hot (no AC in the store) and stressful (language barrier and multiple mixed messages), but once I got back to my hotel and could examine the system on my own in cool air, it was easy enough. We also went back the kiosk from day 1 to learn how to add money to an Orange account. Phones are all pay as you go and there’s no way to add money online, so you have to physically take cash to an Orange kiosk. Fortunately they are everywhere. The minutes and data that came with my SIM expired after one week after which I found that the minimum purchase for a 30 day period was 2200CFA or about 3.30$. I chose a flex plan and started with 2 hours of talk time, 500 text messages, and 1.5G of data at that price point. I don’t know how much of that I’ll actually use in 30 days. Since I’m on Wi-Fi at the hotel and at school, and I only use the phone to talk to delivery drivers, I think it will last. All this could change if I go somewhere without decent Wi-Fi, but for now, it seems like the phone plans (unlike the housing and restaurants) are DEAD CHEAP, which is nice because it means more locals (students) are likely to have access.

Home Is Where You Hang Your Hat?

Housing has been a source of some great stress. I discovered as I was preparing to leave Korea that having safe stable comfortable home base is very critical to managing my anxiety levels and my willingness to do new adventurous things. My friends in the US did a magnificent job of making me feel safe stable and comfortable while I was in their home, but it’s their home. Here in Senegal, I knew that we would search for apartments after I arrived (frustrating but ok it’s probably better to see them in person), but I did not expect the reality. No amount of looking at apartments online could even slightly prepare a person for the reality. The day after our orientation finished (Saturday) my social sponsor (the only professor at my uni who speaks English and therefore got stuck with this job) picked me up to go house hunting. I had spoken with him at length in advance about the budget needs (monthly rent + finding a pre-furnished apartment) & my health requirements which include the need for air-conditioning & my inability to navigate stairs. He said he understood, but when the day came, it was obvious he did not.

Side note about stairs and health: a lot of people judge me because I’m overweight, they assume it’s laziness, and that if I’d just eat less and exercise more I’d be healthy! Nope. I’m a member of the invisible disability club “But You Don’t Look Sick”. Sometimes I am well enough to climb multiple flights of stairs, but not always. Heat makes it worse. If I’ve already walked a lot, it will be harder. It’s hot AF here and I walk everywhere. I’m going to be hoarding my spoons the whole time I’m here. (spoon theory) I don’t believe that people with chronic illness or disabilities should just NOT do things. We know what we need to accommodate ourselves. I can’t do as much. I need to rest more. I need AC for my health not just my comfort. And I need stairs to be a choice as often as possible.

The first apartment we stopped at was inside a restaurant. I mean, the entrance was at least. There were 2 ways to access it, but fundamentally the stairwell was inside a restaurant. Ok, hey, easy access to prepared food at least? However after we completed the first flight of stairs and began the second, I stopped and reminded my sponsor that I could not live in a place with that many stairs. I think he thought I was just being a lazy American when I told him about it in email, but thankfully(?) my edema was bad enough on that day that I could show him the physical effects. I hate that people have to see a health problem before they believe it’s real, but here we are.

The second place we went to was under construction and slightly underground. They told me things could be cleared away and cleaned up, but there was no AC, no kitchen, and very little in the way of natural light. Plus it was under some stairs and had a canted ceiling which gave the whole thing a Harry-Potter-at-the-Dursley’s feeling. In that case, not only would I have had to wait until it was finished and cleaned up, but I would have had to arrange to furnish it with literally every appliance and stick of furniture. I’m only here for 10 months! And even if I was up for all that, the place was tiny and dim, and I remembered how depressed I was in my shoebox in Gyeongju vs how much better I was with a more open space and a view. Another no.

The third place had a ground floor entrance, but only the living room was on the ground floor. The bedroom and kitchen were up a flight of stairs. Having to continuously explain your needs and not be listened to over and over is exhausting and demoralizing. They showed me another room in the same complex that was so tiny that the bed almost completely blocked the entrance to the kitchen. Like, you had to side scoot around the bed to get into the kitchen. Plus, no place to do any work besides the bed (again, a thing I knew from my first Gyeongju apartment during COVID was a recipe for depression). I began to suspect that they deliberately took me to some sketchy places so that the mediocre place they actually wanted me to live would seem great by comparison.

The 4th place we visited was actually a very nice building. Concierge at the front desk, and an elevator! The unit we viewed was only one floor up, but still, not having to do stairs with heavy groceries or on a bad day is always wonderful. The unit however, was unfurnished (though at least had AC installed already). I do have a budget that would allow for buying necessary furnishings, but it takes time and expense reports, and then what do I do with it when I leave? Despite all this, I almost went with this unit because it was the nicest by far. However, they demanded 4 months rent up front, and it became apparent that 3 of those months would never be returned. 1 was just an agency fee, and 2 were a security deposit that by all accounts would vanish and I would have no real recourse after leaving the country to get it back.

The 5th place, and the place they clearly want me to end up living, is the building I’m staying in now. It’s called a hotel, but is in reality a series of furnished apartments rented out by the day. My social sponsor has negotiated a monthly rate, but the apartment we viewed will not be ready until November 5 or 6, so I’m in a different room paying the day rate for 2 weeks, I guess. More expense reports.

This room is … unideal. It had a lot of flies when I moved in, but it seems since I killed them, no new ones have appeared. It only has AC in the bedroom, so I’m not inclined to use the other room. The TVs don’t work so I’m back to watching Netflix on my laptop. There was a washing machine which I was able to get the staff to help me use, and that was nice, being able to do laundry after a week of sweating. However, the shower was 80% broken, water came out of the seams around the shower head, and there was some kind of a leak around the toilet that made the floor always wet. I was not supposed to be in that room at all. I was supposed to go to a different room while we figured out the long term housing, but the person leaving that room hadn’t left by the time we arrived. Then I was supposed to be in this room for only one day, and I waited around the entire second day for someone to tell me where I was moving to, only to learn at the end of the day that I’d be there until Saturday (29th). Now I know I’m staying in this room until my monthly room is ready. I got the bathroom fixed at least.

I desperately want a room that I can know will be mine for at least a few months. I need to unpack, and settle .Twice now, I’ve woken up at 4am to discover the power in ONLY my room is out and had to get dressed enough (Alhamdulillah I still have my abaya, socially suitable to put over PJs in any country) to go the front desk to ask (in sleepy French) for the power to come back. By then, I’m too hot and agitated to go back to sleep well. The weekend brought the exciting discovery that somewhere above me someone is trying to run a nightclub from 1-5am with extreme bass. I mostly can’t hear it with my headphones in, but it was not conducive to good sleep. Aside from my comfort level, there’s finances to consider. My contract covers RENT, not hotels (it does cover hotels for a short while at the beginning, but at one point one of the people helping us look for apartments thought it would be reasonable to stay in a hotel for a whole month while we figured out housing!) And the even crazier part is that my “moving in” budget comes from the same pool of money for any projects I want to do that benefit my host country, so the longer they make me stay in hotels, the less money I have to spend on materials, supplies, or even micro-scholarships for them. I need to be in a monthly rent agreement place for so many reasons both personal and project based.

In a very recent development, a new option appears. One of the other ladies here on the Fulbright program had already done a homestay last spring, and her host mother turned out to be a realtor. In many countries, realtors help you find and rent apartments. I had that arrangement in Korea, too. The realtor my social sponsor arranged was the one who picked out all the sketchy apartments. Anyway, they got her in touch with me, so now I have a thread of hope that a better apartment may be forthcoming.

The School – Veterinarians

Ah, my “job”. I keep telling people this isn’t a job like other jobs. It’s a fellowship (yeah like Frodo!, no not really) and a project. My primary goal is the university I’m assigned to, but I’m also supposed to have side projects and other cultural whatsits to be involved in. I’ve already put out some good feelers for a side project which I’ll write more about if anything comes of it, and I’ve been invited to come and speak at some nebulous future date at at least 2 venues. Secondary projects abound, and I can take, leave or redefine them fairly easily. The challenge is my host university.

I was placed with the Ecole Inter-Etats des Sciences et Médecine Vétérinaires, and even if you don’t speak French, some of those words will be familiar science, medicine, veterinary… It is a veterinary school located inside the Cheik Anta Diop Univeristy here in Dakar. They aren’t into the humanities. They don’t have an existing English department, and for reasons I’m not clear on, they can’t just send their students over to the school of foreign languages next door to take some English, they are in fact trying to create their very own curriculum.

There is really only one guy who speaks English well enough to be comfortable talking to me, and he’s (self described) low on the totem pole, so doesn’t have a lot of the answers to my questions about the details of what they want and what resources they have for this. I finally got their curriculum proposal (in French, but Google Translate is better than nothing) which is only half written and clearly by people who have no clue how language acquisition works. I also had a brief meeting with the gentleman in charge of scheduling details, but can’t get any answers about things like instruction hours. I clearly don’t know how the semesters are structured here. It’s been explained that it’s not like a liberal arts style class where you go at the same time every week for 10-16 weeks (quarter vs semester), but that students rotate through very short and very intensive courses of study (2-3 weeks at a time?). I’m still trying to figure out if I need to design English classes on that time scale or if it’s even possible to have students regularly show up 2x a week. So far I’ve written a 4 page counter memo explaining the overambitious nature of their dream and the crushing weight of compromising with reality, but I don’t know who to give it to.

They also want clinic workshops which are much easier to create and run, but less effective for overall language acquisition. Since I have next to no data or guidance, and everyone who could speak to me about it is apparently out of town or busy for the next two weeks, I’ve decided to spend some time on YouTube and TikTok looking for videos by vets that are: a) educational, b) funny, c) both — in order to design some short one-shot workshops around those. However, since I can’t design anything until I have some idea of the students actual English level, implementing a widespread level assessment test is the first goal.

But that’s not all! They want the faculty, admin, and IT staff to have English lessons relevant to their needs! While I was cleaning 3 years of dust off the pre-COVID Fellow’s desk (now my desk) I found a schedule which had him doing 18 hours of classes a week! That is a high amount even if it’s your only job because on average, 2 hours outside of class for every hour in class is a good balance for adequate lesson prep and homework/assessment grading and feedback on a new course. Once you’ve done a course a time or two, you can drop that down to 1:1 because the lessons are basically made and you’ve developed some tricks to grading the assignments, but considering I’ll be designing the curriculum and either finding or creating all the materials, and I’m expected to have outside projects, that’s INSANE.

What Am I Doing Here?

So, here I am, wandering between my shabby hotel apartment and the local café, writing in my blog and diving down a veterinary rabbit hole on YouTube because I have no qwerty keyboard at my office and no access to the curriculum material or student information, and my social sponsor is out of town.

I wish I could tell you about the city, and the food, and culture, but honestly, I’ve been fairly mono-focused on my base level Maslow’s needs here, contending with vaguely poor health while having to negotiate in a foreign language daily for things like food, water, and shelter. I’ve talked before about culture shock, and the fact that even simple tasks take more energy in a foreign place/language. It’s no joke, and it hasn’t left me with much energy for adventure type exploring. I’ve walked around some. The sidewalks are used for parked cars leaving pedestrians to walk in traffic (yay). There are lots of vendors on the street that I look forward to investigating soon. I have downloaded the recommended ride share apps that should allow me to avoid haggling with taxi drivers, but I probably won’t do much “touristing” until December when the weather is less aggressive and I can be outside for more than an hour or two without getting dizzy.

Welcome to Senegal.

Travel & Invisible Disability

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.