Summer is a time of vacations and trips. The stress of travel burdens even those who are healthy. When you are ill and live with a chronic condition, those burdens often deter us from even trying to travel.
The last time I traveled was over two years ago – for the wedding of a dear friend I’ve known for 25 years. After a long day of flights, I ended up in a Florida hotel room with a nonworking phone. So I could not call the front desk for the meal I needed or for any other help. I was stranded. When a friend who was staying with me arrived 7 hours later, he had the energy to be furious. I did not. I was just a crying mess.
Even the idea of travel can exhaust us. The brain fog makes it hard to figure out what to pack, so either indecision causes us to pack too much or frustration causes us to pack too little. We are required to be obsequious and lovely to everyone because we never know when we are going to need a helping hand from a stranger. The indignity of being at the eye level of each and every adult crotch as we traverse through airports in a wheelchair seems only to reinforce our subservient position.
And then there is the waiting – waiting for the wheelchair. Being sick makes you patient as well as a patient. With decades of meditation practice, I excel at getting myself into a zen mode, but the strain of travel can challenge even my experience at conjuring that mindset.
Over the past two decades of living with a chronic illness, I have developed strategies for travel. I knew to ask for the restroom on the way to the gate so that when I was abandoned I wouldn’t have to find someone to take me if I needed the facilitates later. I try and buy food when I arrive at my destination airport at one of the food vendors because I would not have food at home nor the energy to prepare any food even if I had a stocked kitchen. I would remind the flight attendant that I needed help when we landed and asked politely and sweetly that he or she call ahead.
That last tactic didn’t always work. I once waited nearly an hour for a wheelchair. But usually a call from the air before the plane landed helped to reduce the wait time.
I greatly mourn the old National Airport in DC. You could walk off your plane, grab your luggage and be on the taxi line in less than 1000 feet – back when I could still walk in the airport. Now, every airport is a shopping mall requiring long and needless distances to get from one gate to another. That means time and money helping those of us who are handicapped.
Disney World is another place with needless distances. Eleven years ago, I arrived early and alone to meet my family – a reunion a year following my mother’s death. The staff at the hotel claimed that they were prohibited by Florida law to push my wheelchair to the room.
I then did something very out of character. I did not burst into tears at the shame and embarrassment I felt at being unable to function. I had to dig deep into my old personality – the confident, assertive person I was before I got sick. I got angry. Now, anger takes energy that sick people don’t have – or if they have energy, generally they need it for better things. So we don’t get angry easily or often.
I replied, very quietly and clearly, “That’s a peculiar claim because the laws of Florida didn’t prevent a stranger from pushing me through the Orlando Airport. Perhaps it’s a rule here at Disney resorts, in which case I will sue under the American Disability Act and any applicable laws of Florida I can find. And make sure every one I know who works in broadcast journalism knows about it.”
Someone then “broke the rules” and got me to my room so I could rest up and recover from the trip before my family arrived – which was exactly why I had planned to arrive before they did.
Four years later, I travelled in a South American country for the wedding of another long time and very dear friend. I will endure the ordeal of travel for my dearest friends because they are the ones who keep me alive. I’m very loyal to them and travel if at all possible to be present for the biggest rituals and events of their lives, even if I end up in bed for months after. And yes, that happens. There’s always a cost.
At a local airport in this foreign country, I had to be on a particular flight to meet up with a French woman who was also going to the wedding. I did not know her. She was also a friend of the bride and she had agreed to drive me to the wedding destination several hours away which was terrifically kind of her because otherwise I could not have gotten myself to the remote wedding location. So, I could not miss my flight.
To my great regret, I did not speak the native language. After I checked in, I was deposited in a crowded room and appeared to have been forgotten by the airport officials and airline staff. I couldn’t even tell who was in charge. I looked at my watch again and again as the departure time approached. I had to go to the bathroom. And I had to get some food.
Finally in a panic, I called an ex-boyfriend who lived in the country and spoke the language and asked for his help. I handed the phone to an official-looking someone for him to speak to. I don’t know what he said (or to whom) but I was immediately taken to the gate and onto the plane with no bathroom stop and no stop for food. I didn’t even go through security. Thanks to him, I made the flight, I met my French companion and made it to the wedding.
Later, he admitted that his country does not support people with disabilities very well. I felt grateful for the laws we do have in the United States, even if they are imperfect.
My passport is up for renewal later this month. I questioned whether or not to renew it. When I last renewed my passport in 2008, I did so because a man I was in love with told me he wanted to take me to London and Paris. That trip never ended up happening.
But I was optimistic that he would take me. Was I still optimistic? Is it realistic to think I am going to be able to travel abroad again? Am I still the sort of American that owns a passport?
I know many American never get to travel abroad and don’t even own passports. I know that the travel I did before I got sick was a privilege – a great privilege. I knew that I was lucky then; and I appreciate the fortune of health and wealth that enabled those trips I have made all the more since.
I love to travel for the same reasons I loved learning. For me traveling was a way to learn – about art, architecture, history, food, language, people. And to learn about myself in contrast. Sometimes I traveled to retreat in order to learn about myself. I first decided to become a yoga teacher and later a therapist because of a yoga retreat in 2002. That trip saved my life because, although I’d been doing yoga for more than five years already, for the first time since getting sick in 2000 I had agency over my body in a way I didn’t believe possible. On the plane home from that trip, I decided to become a teacher, drew my logo and started to plan.
When I was a little girl, I had a suitcase with stickers from the cities of Europe. Foreign places loomed large in my imagination and in the books I read – of Madeline in her two straight lines, of Mary Lennox and her secret garden, and of many historical figures I read about for fun – such as Mary Queen of Scots and Katherine Swynford.
I was lucky to be able to first travel to Europe when I was 18 on a school study trip. I backpacked through Europe again on my own for a month after college; I declared that was the only graduation gift I desired. I also studied law for a few months in Italy more than twenty-five years ago and managed a religious pilgrimage to England about five years after I got sick.
But in the last ten years, I have used my passport four times – twice for weddings abroad, one family trip and one yoga retreat. None of those seem likely in the foreseeable future. I don’t have the money to travel any longer in any case. So I had pretty much decided not to renew my passport.
Then Anthony Bourdain died. Now, if anyone has proven that you can travel and learn a lot simply by going to the other side of town, Bourdain did. He taught us to ask questions, be curious, and to be sensitive. He went to my college about a decade before I and described the experience so accurately in his inimitable way that he made me laugh and cry. I loved his storytelling, but I loved his attitude more.
Ed Lavandera, National Correspondent for CNN, suggested in a tweet that “a proper tribute to Anthony Bourdain would be wherever you live, venture across town, across the tracks, to a place you wouldn’t normally go and find a place to eat and talk with strangers.”
So even without a passport, we can travel and learn about others and ourselves. But in honor of Bourdain and as an affirmation of his values, I decided that yes, indeed, I will renew my passport.
If I’m an advocate for anything, it’s to move. As far as you can, as much as you can. Across the ocean, or simply across the river. The extent to which you can walk in someone else’s shoes or at least eat their food, it’s a plus for everybody. Open your mind, get up off the couch, move. – Anthony Bourdain
And you know, if you’re too sick to get off the couch you could do no worse than to watch and accompany Bourdain on his explorations. Anthony Bourdain: Parts Unknown was scheduled to come off Netflix US on June 16. But Netflix announced they are available for the foreseeable future. Here is an essay that suggests five episodes to start with and why (Beirut, the Bronx, Hanoi, Sicily, and South Korea).
Travel in whatever way you can – abroad or at home, over the ocean or the river, yourself or vicariously through another. Being a traveller does not require an able body and disposable income. To be a traveler is to embrace a particular attitude – an attitude of openness and learning and possibility.
So I will return to the way I travelled when I was a child – in books. I will read books that have been translated from other languages. And I will seek out movies and series that challenge my perspective and really mess up my Netflix algorithm. I will look at maps so I can visualize being in these places of my imagination. I’ll search online for videos and history and context.
And I am very fortunate I live in a city with food from countries around the world. (There’s a joke that every time a foreign country endures a coup, at least three new restaurants open in Bethesda, a Washington DC suburb.) On my good days when I can venture out, I can make a choice to eat at a place that offers unfamiliar food that I would not normally choose. If I can’t get across an ocean I can cross a river.
I do not want more of the same. I want to learn because learning will help me feel more alive and less sick.
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