Just because I am disabled…

Just because I am disabled does not mean I am not a woman.

Just because I am disabled does not mean I am stupid.

Just because I am disabled does not mean I am incapable.

Just because I am disabled does not mean I am not an adult.

Just because I am disabled does not mean I am weak.

Just because I am disabled does not man I am not strong.

Just because I am disabled does not mean I don’t have an opinion.

Just because I am disabled does not mean I don’t enjoy life.

Just because I am disabled does not mean I don’t like sex.

Just because I am disabled does not mean I am worthless to society.

Just because I am disabled does not mean I am “broken.”

Just because I am disabled does not mean I am not proud of myself.

Just because I am disabled does not mean I don’t like my body.

Just because I am disabled does not mean I am impolite.

Just because I am disabled does not mean you can push me or touch me without asking politely first.

Just because I am disabled does not give you the right to call me names.

Just because I am disabled does not mean I am not important.

Just because I am disabled does not mean I can’t make my own decisions.

Just because I am disabled does not mean I can’t love.

Just because I am disabled does not mean I can’t drive.

Just because I am disabled does not mean I can’t earn a degree.

Just because I am disabled does not mean I can’t shop.

Just because I am disabled does not mean I don’t enjoy the natural world.

 

Just because I am disabled does not mean I am not a living human.

 

 

 

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The Downside of Positivity

I was on the phone with a dear old friend, telling him about an upcoming move. “And it’s right across from the hospital, which is either terrifically convenient or phenomenally depressing!” I finished, describing my new apartment’s location with as much humor as I could manage.

“Well, that’s a good thing!” he said.

“Why?” I asked. “Which one? That it’s convenient…?” There was something in his tone that made me think I was missing something here.

“I was going to say, because it will inspire you to get better!” he told me.

Ouch.

 

With well-known illnesses — say, a cold — most people do not dole out droll little bits of wisdom concerning positive thinking and inspiration. No one believes that a cold will go away because I simply want it to. Instead, they recommend some OTC medications, rest, and perhaps a good hot whiskey with lemon. It’s only when an illness or condition is not particularly well-understood and is (usually) long term that the troubling statements about positive thinking start. Once you’ve experienced this for a while, you begin to notice some very troubling downsides to positivism.

  1. The continual stress on “being positive” can deny the validity of other feelings, like sadness, anger, or loss.
  2. Pushing positive thinking can lead someone to feel guilt over feeling any other emotions but positive ones.
  3. Positive thinking alone will not cure diseases. But statements like the one my friend made place the burden of regaining health solely on the patient. To get better, I just needed the proper mental state, or the right motivation.
  4. The “positive thinking will cure you” mindset leads to guilt on the part of the patient when positive thinking does not actually lead to health. Since guilt is a negative emotion, this can lead into a downward spiral … must think positive to get healthy – not getting healthy – not positive enough – my fault, guilt is a negative emotion, must instead think positively – still not well, more guilt because the first influx of guilt wasn’t apparently quashed well enough. Guilt on top of guilt.
  5. If a cure is not achieved, then to those pushing positive thinking, you just haven’t thought positively enough. This leads to patient-blaming by those who believe in positive thinking as a cure-all.
  6. A failure to improve could imply that you just need more motivation to truly be positive. This does not always mean creating positive and enjoyable experiences for a patient. My friend thought that living next to a hospital might, through mentally stressing me, inspire me to become get better. Emotionally and physically vulnerable patients can be put in harmful situations quite easily. To this school of thought, a more intense job, a long hike, or abusive emotional manipulation are all just things to motivate you to get better, and are therefore completely justified.
  7. I sometimes feel that positive thinking became a fad so quickly because Western society is losing the ability to deal with negative emotions. We become frustrated when someone is hurting and we can’t do anything about it, and instead of empathizing, we cheat. We tell someone to stay positive. We blame them for their emotions and condition. We run from the wide range of emotions someone who is chronically ill experiences. Embracing positive thinking as a cure for illness doesn’t just hurt the patient — it stifles emotional growth for those around them by giving them an easy out. Blame is usually easier than empathy, sympathy, and compassion.

Being positive is not completely a bad thing. Most of us, when given the choice between being depressed and being content, will wholeheartedly chose contentedness! It is also very possible to be both chronically ill and happy. I am by no means against positive feelings or saying that those with disabilities cannot be happy. No.

Rather I think it might be time to admit that positivism has a negative side too, and applying it as a panacea might very well wound those it is supposed to heal.

 

 

 

Traveling with POTS, VI

Travel buddies are the best.

When I was a teen, I couldn’t wait to take a few solo trips. In college and the first few years of graduate school, I did just that. There was something thrilling about setting off by oneself into the great world and successfully conquering one small bit of it. (Even though in my case it was usually more luck than skill that saw me through my (mis)adventures!).

To be honest, though, the joy of traveling by myself had started to wane just a little bit even before I got sick. Taking pictures was a way to share my experiences with others without having anyone physically present, but it was initially a sort of substitute for real human company. Then I feel in love with photography in earnest, and I also became much more ill. As I really began to struggle, a travel buddy was the ticket to successful travel… not my boarding pass, which I lost once. When you’re lost in brain fog, a travel buddy can help point you towards the right sex bathroom; when you’re too weak to lift a case, a travel buddy can help lug it over (or convince someone else to do the lugging for both of you!). A travel buddy can remind me about medications, shout at rude people, drive a rental car, and make sure no one accidentally puts something I’m allergic to in my water or meal while I’m in the loo. In return, I’m an endless source of bumbling amusement most especially, but I try to have their back as well. And the tab, whenever possible, I’ll admit.

The funny thing is, even with my changing perspective on solo travel, if POTS hadn’t slammed into me I might not have learned to not only tolerate, but to even enjoy someone else’s company on trips. Wrecking ball style, it shattered my illusions about the safety of solo hiking, and brought in instead an appreciation for fellow travelers and their journeys that I had never even considered. Even when I am well enough to go driving around a city and spend a day on the town by myself, I find myself checking over my shoulder not because of danger of being alone, but because more often than not I want to look back and share this experience with someone.

Travel buddies. Hard to find, but worth the investment.

 

 

Traveling with POTS, V

Two words. Checked bags.

Except for medications and whatnot, of course. Which, let’s face it, probably fill your carry-on and/or personal item anyway. Spring for a snazzy carry-on to make the fact that you’re carrying enough medications for an old folk’s home more palatable, and consign the heavy stuff to the tender loving care of the airline.

 

Traveling with POTS, IV

My luggage is also full of compression wear. I packed a lot, and I used almost all of it. I thought about not bringing much… but then I remembered that I probably wouldn’t want to spend time and energy on vacation hand washing hose every night. Thankfully even compression athletic leggings don’t take up much space or weight in luggage.

Even if I don’t need thigh-high squeezers at home, when I’m traveling the stress and additional demands of travel mean that I sometimes really have to just flail about putting the things on and lump it (literally, because on a bad flare day the pressure might bring about a rash). But it’s worth it. The difference in between watching a movie or counting the soggy popcorn kernels on the floor of the theater is a pair of boa-constrictor tight hose in a stylish (*not*) nude.

Traveling with POTS, III

I pack a lot of shorts and pants. Compression hose might look nice with a dress, and I love dresses… but I sit cross-legged everywhere, or even curled up with my knees hugged to my chest. I have too many younger relations who haven’t grown out of their “I see London, I see France!!” stage to do otherwise.

No, I’m not afraid or emotionally stressed. Physically, it seems to help with the blood pressure issues and nausea of my version of POTS. Many websites recommend similar tactics while standing or sitting (“fidget!” a UK site recommended! 🙂 So at restaurants, churches, graduations, stadiums, and theaters, I defy the norms of society. I don’t sit properly with my feet on the floor, or with my ankles crossed. I yoda, and smile. Invert my verbs too, I sometimes do. 🙂

 

Chair with Wheels

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This trip marked a first for me. Amazingly enough, I’d never used a wheelchair except in hospitals and doctor’s offices. I knew I needed to try to use my body as much as possible. “Use it or lose it!”: that was my mantra. The truth is that I probably missed out on some evenings out or trips to places like museums or zoos, just because I was simply too tired and couldn’t stand that long.

But at the end of my last trip, I flared. A few days before I  was supposed to fly home, I lost my own private battle to stand rather abruptly, not even making it all the way through the simple hymn I was supposed to be singing. To complicate matters further, the day after I made it back home I’d be undergoing a procedure. I needed rest. I needed help. I needed to not stand for hours in check-in lines, security lines, and boarding lines. I needed a wheelchair.

Of course, I couldn’t just go and request one, pushing aside years of denial in one casual click of the mouse, o so easily. No. I researched involuntarily denied boarding online. I sought advice from that bastion of support, Facebook. People in a dedicated POTS group instantly responded. If it would help, go for it! That’s what it was there for. The wheelchair assistants were paid. No, I wasn’t taking it from someone else, and it wasn’t just cutting in line. If I thought I would have issues, a wheelchair was a perfectly logical, very practical thing to do. I stared at the screen. Then I decided I needed another opinion… so I tracked down my younger sister.

“It’s just a chair with wheels!” she snorted, rolling her eyes. “Just do it already!” Then, problem dismissed, she tossed her hair back and settled down to do some real work.

Hmm.

Ok.

After another hour of pointless agonizing, I finally went through the online check-in process and requested assistance going through the airport. My sister stood behind me, providing emotional support and no doubt inwardly rejoicing that she wasn’t going to be a withered bent shell of a human being due to carrying her stubborn sister through a terminal. All it took was a few clicks of the mouse on an easy website, and it was done.

There rest of the process was equally simple — and amazingly, almost everyone reacted like my sister had the first time I asked her about getting a wheelchair through the airport. We went to the front desk of the airline and checked our bags (ok, I sat off on one side while my sister waited in line. Have I mentioned she’s rather awesome?). The harried man behind the counter very kindly confirmed my reservation and directed us to some seats off to the side. A perky woman checked our boarding passes and brought a wheelchair over in a few short minutes (or rather a transport chair, lacking any way for me to control it). My sister and I spent another few minutes behind a baggage area before another young woman came and took us all the way through security and to our gate, cheerfully and very patiently. We waited at our gate and I chatted with other passengers, not a one of whom seemed to care one whit that I was seated in a wheelchair instead of a normal seat. It was a discount airline and we were all in for a tight and uncomfortable trip no matter what; there was a strong sense of fellow-feeling and brotherhood as we contemplated hours in vinyl jumpseats. There was a longer wait to actually get on the plane, but half-way through the boarding process someone else materialized and propelled me down the ramp.

I napped for most of the flight, curled into my vinyl square like a cat. There are some advantages to being vertically challenged. 🙂 After that rest, I felt like I didn’t really need the wheelchair for the trip off the plane. There isn’t nearly as much standing involved in the deplaning process, and it is extended periods of standing that tax my system. But in the end, I was glad that I simply got back in the seat. Another nice man took us at warp speed through hall after hall…after hall… after hall…. the terminals were strung together and endless. When we arrived at baggage claim, of course our baggage hadn’t — it’s a quirky constant of air travel. If you are on time, your bags are late. The wait for your bags is directly related to how few delays you experienced in flight. Got through TSA fast? Take a number and wait 20 minutes in line at the baggage clerk’s desk, sucker! But the longer you are delayed, the faster your bags beat you to your destination. It once took me 29 hours to fly from the Central Coast of California to Denver. My bags beat me by two days.

I had been worried that I would be judged, the young woman in the wheelchair. How could she need this? I impulsively told everyone what was wrong: “I have POTS. Postural Orthostatic Tachycardia. The part of your body that automatically controls things like heart rate and blood pressure? That’s broken on me.” I told people who didn’t even want to hear it. I was babbling and knew it and just couldn’t stop. It didn’t matter one way or the other, though, and finally I began to relax a tad. Gradually I got accustomed to watching people from my new position. I didn’t seem to be any more or less visible than I was normally, which is not very; people’s eyes frequently slide past me. If they did it now for a different reason instead of the normal lack of perception, I couldn’t tell. There were a lot of butts. It wasn’t always terribly comfortable having someone else push me, because with a transport chair there wasn’t any easy way for me to move myself if I was in the way. I had to crane my neck around to look at the person propelling me, and it felt so impolite to talk to someone without looking at them, but even more impolite to simply sit there without any sort of lubricating conversation.  I got a sort of childish glee from the few things I could do, like pushing the elevator buttons. “I got it!” I’d squeal from the chair, face to face with the ranks of glowing circles. I hadn’t been that pleased with my ability to punch the button for the ground floor since I was four. Ah, well.

For a first experience, it was incredibly positive. I was treated with courtesy everywhere and kindness at almost every turn by the staff. My fellow travelers, amazingly, treated me like any other travel-weary, sweaty, and frustrated journeyer on the bumpy sky lanes. I have to thank Frontier Airlines and their excellent personnel for helping me. It was an emotional step to take, but now that’s it’s been done my worry over using a wheelchair seems nearly as childish as my excitement for pushing elevator buttons. I don’t know whether or not overcoming this reluctance will open up a whole new world of evening operas and museum day trips yet. But I do feel that big events seem far more doable than they have in the past… and I now know that my local zoo rents chairs with wheels. 🙂