Micro Details of Traveling with Health Issues

By: Loolwa Khazzoom, Founder, Dancing with Pain

July 29th, 2016 • Travel Dance HealPrint Print

By definition, when you are managing multiple health issues, and doing a good job of it, you become “high maintenance.” You cannot just go with the flow, as much as you’d like, because you have to pay attention to details. On the one hand, it is perhaps letting go and flowing that will cross you over into healing. On the other hand, not paying attention to or responding mindfully to all the little details can end up biting you in the ass.

Speaking of ass, I had a friend who readily acknowledged that she was a pain in the ass – specifically, because she knew what she needed and she advocated for herself. Constantly. She wouldn’t just ask for something, but if it was not done the way she needed it done, she would push for it to be taken care of as she needed it done. She was a role model and inspiration for me.

See the thing is that when you have health issues; when you know all the nuances involved; and when you have been burned by not tending to those nuances, in the interest of making your life easier by avoiding tensions with others, you are well aware of what can happen if you don’t self-advocate and push for what you need. “I’ll just…” you think at the time, wanting so badly to take the path of least resistance. Then you end up in bed for a week, kicking yourself for not speaking up. Again.

But when you do speak up, you can end up in some variation of an all-out battle. People can respond to you like you’re an asshole, not someone with a health issue and/or disability who is valiantly practicing self-care, in ways that are clear and respectful – ie, speaking in a gentle tone, saying “please” and “thank you,” and only asking for the bare minimum of what you really need from someone.

I’m encountering these micro-details in my travels. They are exhausting. Let’s start with the last place I stayed. When the host stuck out his hand to shake mine, I informed him, warmly and sweetly, as I always inform people, that I can’t shake hands because I have hypersensitive wrists. “But I can give a warm wave,” I said, as I always do, smiling and waving.

I explain why I don’t shake hands, because I have discovered that many people take it personally. I add the smiling and waving thing because it conveys my warmth and assuages any bruised egos. Plus people typically think it’s cute and laugh, breaking any tension they may feel. This guy, however, clearly was turned off by that exchange, as evident in his irritated facial expression and body language. It soon became apparent to me that at that moment, he decided I was an asshole and wrote me off.

So already, we were going into a relationship with me labeled as an annoyance. It’s kind of like when you self-advocate with doctors, whether asking for additional information or questioning a course of action on your body, and they decide you are not an intelligent, conscientious, and self-loving individual, but rather, a “difficult patient.” They label you as such; it goes into your chart; and then every doctor – who listens to doctors over and above patients – then treats you as such. I wrote about this phenomenon at length in my articles on what I coined as “The Good Patient Syndrome.”

Back to the guy at the last house: While the space itself was magical, nestled in the rolling green hills of Kapaa, with an expansive view of the mountains in the distance, which was profoundly calming to my nervous system, there were numerous issues with it. First, unbelievably, there was construction going on in the valley just below the house – a government project where people were building their own houses and therefore purchasing the land and materials for a total of under $100,000. I say “unbelievably” because the whole impetus for this trip was the chain reaction of events initiated by the asshole neighbor next door in Seattle, who spent four full months tearing up the street in front of my house, with all manner of heavy and extremely loud machinery, while refusing to give me advance notice of when jack hammers might be involved. That in turn led to stress levels through the roof, which in turn undermined all my hard work of the past five years and caused the nodules to grow by 15% and elevate my cholesterol and sugar levels (despite the exact same diet) to dangerous levels.

Which all goes to say, the construction in the valley below was an awesome project – I whole-heartedly support such initiatives. It just should have been mentioned in the listing, which I read carefully to ensure there were no booby traps (cats, dogs, squishy beds, smoking of any kind, etc). When I expressed concern (but not the combination of panic, distress, anger, and overwhelm I was feeling – given that, among other things, it was too late to find another place to stay, as listings book up quickly in the summer), the host downplayed my concern and claimed that he had written something about the construction in the listing, but somewhere “hidden” – well not “hidden,” he continued, but somewhere not obvious. Truth is he did not write about it at all. (I double-checked after the exchange.) But I didn’t argue that point, salient as it may have been, in the interest of being conciliatory. Pick your battles and all that.

Then there was the fact that the pots were all Teflon and scratched – making it unhealthy for me to use them; the rolling counter/cutting board had two very large marks that looked suspiciously like black mold; the coffee maker – which I had to ask him for, despite the fact that he should have provided it as an AirBnB host – was disgustingly dirty, to the point that I didn’t even want to touch it; the bullet blender, which I needed for my morning smoothies (supplements plus berries plus juice) was also dirty, and even after I washed it, there were little black stains that also looked suspiciously like black mold. Then there was the actual dirt in the corners, on the sides of the floors, in the cabinet and drawers in the bedroom, and on the windows throughout the space – the latter of which also looked suspiciously like mold.

I wanted to use the cutting board and coffee pot but needed them cleaned. I didn’t want to ask the host to clean them, however, not only because he was already rather hostile toward and uptight with me, but also because I would need to ask him to clean it outside the unit, so that the mold would not become airborne and therefore even more of a problem. Given his energy and interaction with me up until that point, I knew he would have a hissy fit about even bringing up the mold issue, never mind asking him to clean it outside.

In general, it’s like you have a certain amount of “request points” with someone, and you have to be judicious in how you use up those points – unless it’s someone who is already aware of and caring about health issues and disabilities. Someone who leaves shit dirty and moldy for his paying guests it most likely not that person. (As a side note, amazingly, he and his wife were massage therapists. I would not want people with this energy and lack of awareness and compassion to touch me.)

There were numerous other issues with this place: The sheets and pillowcases were stinky like body odor, making me question whether they had been washed at all; there was no curtain on one window in the bedroom and only partial curtains on the other window in the bedroom and the window in the bathroom – leading to discomfort around privacy; and while there was a Britta water filter, for which I was grateful (it does not seem to be provided typically by AirBnB and VRBO hosts), there was no kitchen towel, bathroom floor towel, or sponges, and there was a general lack of supplies and utensils.

There was, in fact, so much “off” with and unattended to in this place, that I needed to buckle down and deal with it all on my own. So I put the coffee maker into the rolling counter/cutting board and rolled it to the space outside the unit; I bought my own steel all-purpose pot (adding to the load in my suitcase – another and related issue), in which I could make army-style coffee, tea, and all manner of meals; I bought my own sponges; and as I decided to do as a general rule, I bought my own “green” dishwashing soap and spray, to keep things clean without making things toxic. Other than that, I lived out of my suitcase, to avoid the dirtiness of the place.

I reserved my requests for one kitchen towel, one bathroom floor towel, the coffee pot (which I didn’t use, without saying anything, so as not to ruffle feathers), and the cutting board (ditto). After letting a few hours pass, to avoid a sense of “bombardment,” I then made my most important request, via text – asking for information about the construction next door. The host had said it was only on the weekends. I wanted to make sure that was the case. People can say things lightly, when there is no consequence to their being mistaken. I, however, did not want to be rudely awakened by machinery so loud that it could injure my ears again.

So I asked a few things: First, was he certain that it was only on the weekends, ie, had they ever worked on the weekdays; second, what time did they end (I already knew they started at 8:00 am); and third, might he know the name of the organization sponsoring the project, so that I could call and get some details.

I received a snarky email from his wife in reply, informing me that they cannot control the construction any more than they can control the wild roosters (which wake people up at 4:00 am). I was further informed that it’s “not their business” to get involved in the project going on, and that they therefore do not know the name of the sponsoring organization. In addition, I was informed, not so subtly, that they would be happy to help me cancel my reservation on their property. Lastly, I was given unsolicited advice that I should stay at a hotel, where I could “control my environment.” Never mind that self-healing easily costs as much as $6,000 a month; that hotels appropriate for health issues typically $150-$200/night; and that even in the best case hotel scenario, you can’t really control your environment.

Her ignorant and callous response in turn left the burden on me to take the high road and de-escalate the situation. I replied that I did not expect the hosts to control the environment; that I was simply asking for information so that I could manage my expectations and take care of myself accordingly; and that if they did not know the name of the organization, they did not know it, end of story. I received two more texts advising me that 1) yes they sometimes work on weekdays and 2) the houses were near completion and that the work being done was minor. That was actually helpful information. As I surveyed the site, I saw that it was true and reasoned that there might be some drilling, sawing, and hammering, but nothing crazy involving major machinery. As it turned out, the construction ended up being a non-issue. With earplugs, I was able to sleep right through it.

However, that exchange, plus the general sense that the couple had labeled me a pain in the ass simply for having health issues and practicing self-care, left me feeling extremely uncomfortable. The space was down and away from the main house, which was great, because I could avoid the hosts – which I did, skulking past the house whenever I went to my car, hoping nobody would come out. I washed the stinky sheets with quite a bit of anxiety, however, knowing it would become an issue if the host “caught” me washing them – again, seeing me as a pain in the ass instead of apologizing for having stinky sheets on the bed. The laundry did in fact become an issue, with the guy questioning and micromanaging the frequency of my loads and the very fact that I washed my sheets (at all) during the two weeks I was there.

I thought about leaving but ultimately decided to stay and get whatever spiritual juice I could out of the situation. The dynamic, I realized, triggered childhood issues of having to tiptoe around my parents, in particular my father, who would fly into a fit of rage over the smallest things. As a child, I became adept at anticipation, which in turn required hypervigilance – in particular, constant awareness in my head of how the other person was thinking/feeling and where that person was in space. The dynamic was happening in this AirBnB situation. I was anticipating likely encounters and the likely conversations that would follow, preparing what I would say. My planning thoughts bordered on obsessive in their frequency.

One rainy day, midway through my stay, I decided to dance in the rain – literally. I danced for two and a half hours on the back porch of this unit, soaked and deliciously happy. My dance took over the energy of the space and dramatically shifted it. Suddenly I was in my head, not the hosts’ head, and my energy was filling up my being and emanating out, instead of feeling myself caving inward, with the hosts’ energy. I was then able to breathe and trust myself to handle any encounter. I suddenly felt able to advocate for myself in any encounter, because I was in my body and being, instead of playing both sides – being in my head and their head at the same time. I had the power to command an exchange instead of be at someone else’s mercy. I still did have some anxiety, but it was nominal, limited to this final laundry issue:

One night, toward the end of my two week stay, I spilled water on the floor, and the floor towel became disgustingly dirty because of all the grime on the floor. By then, the host had asked me to keep laundry to a maximum of every other day. However, I did not want to put the disgusting towel in with my clothes in the wash, meaning I had to do two washing loads (though I was putting everything in the same drying cycle). I was anxious the host would come into the laundry room, get upset that I was doing two loads, despite his request, and get angry that I was putting such a little amount into the washing machine, in particular, using “hot” water instead of cold or warm. I just didn’t want to deal with it. So again, I found myself skulking around, scurrying in and out of the laundry room, peeking to make sure they weren’t in the laundry room before heading over to it, all so as to avoid confrontation.

Which all goes to say, here’s the thing about traveling through VRBO and AirBnB: You’re at the mercy of the host, to a certain extent, even though you are paying for your space. You re-enter a family-like dynamic, perhaps even child-like dynamic, where you have to ask for your needs to be met, and the host may or may not be forthcoming, with or without added judgement and drama. When you have health issues, and when the million micro-details involved in managing those health issues are not taken care of, you have an extra number of requests to make, which increases the likelihood that you’ll be seen as a pain in the ass, which in turn increases the likelihood that there will be some unpleasantness, discomfort, and/or conflict, which in turn increases your anxiety levels and discomfort in the space.

Over the past 15 years, since the onset of chronic pain, I always stayed at The Marriott, because the high standards and brand consistency (except in one surprising case with a downright squishy bed) made it predictable and therefore safe to travel, even with health issues: There was a firm bed with soft top, meaning I could sleep without triggering back pain; there was a bathtub in the room, meaning I could soften my body before sleeping and therefore improve my sleep; there was a Jacuzzi for additional softening and soothing; there was a gym, where I could work out; and there was a mini-fridge, where I could store my supplements and food. The Residence Inn brand of the hotel chain was my favorite, because there was a full-on kitchen to boot – making it almost as easy to stay at the hotel as it was at home.

The thing is that hotels, in particular of this caliber, are very expensive and therefore unrealistic when traveling for long periods. In addition, most of the hotels in most of the places do not have full kitchens. Staying at a hotel additionally means there are neighbors on the other side of thin walls, and especially when there are people staying upstairs, in particular when they do not tread lightly, it can set off pain in my very sensitive ears. In addition, given the hypersensitivity of my body, getting in and out of elevators, and when things are crowded, moving through the communal space of a hotel, can be challenging. For example, when people push to get into the elevator instead of waiting for and giving space to people coming out (as frequently happens, though you might not notice unless/until you are adversely affected by it), their movements trigger a pain episode that can last hours or days.

Above and beyond those considerations, I just like the idea of living in a home away from home. I am much more of a down-to-earth person than a hoity-toity one. The idea of living with the locals, as the locals do, is very appealing to me. I am a traveler, not a tourist, and I do not want to be removed from the place where I am staying.



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