So, I’m back from Tokyo and it was an AWESOME trip. If you want to see pics, they’re on my Instagram, but I wanted to talk a bit about my experience traveling with Keratoconus. I was really nervous about doing this kind of travel for many years because I’ve had a couple of scary experiences doing shorter trips and getting an eye inflammation. It’s scary being in an unfamiliar place and not being able to see and adding a language barrier to that seemed even scarier. But, I’m really happy to share that the trip itself went off without a hitch and all of the advance planning I did really helped make the trip less stressful.
Here’s what I learned:
The long flight is really the worst part. Everyone gets dehydrated on long plane trips and one of the things that can lead to eye infections/irritation with folks with KC is dry eye. So…
- Hydrate a lot. A LOT. And use your artificial tears more than usual, like every hour.
- Take your contacts out. This is a must. I got a pair of glasses, even though I can’t really see out of them,for peace of mind while my contacts were out. I also brought my other pair of contacts which freaked me out a bit because they are so expensive.
- Get a mini humidifier to set up for the flight. You can get one from Walgreens or CVS. With a lot of them, they are battery operated; all you need a water bottle to attach to it.
- Download a lot of podcasts, audiobooks and other stuff to listen to when you can’t see.
- Make sure someone knows about your situation so you can get around the plane if you need to.(This last part is important for getting from the bathroom to your seat, or off the plane if you want to go the entire flight without your lenses. If you’re not traveling with someone,you can contact the airport/airline and inform them that you’re visually impaired.)
So yeah, basically all of these tips aren’t very different than for anyone else on a long flight, except for the last one.
Once I got through the flight it was pretty much smooth sailing. There were the usual problems — my night vision is terrible and getting by on some of those narrow and/or crowded streets is tricky. I said “sumimasen” (excuse me) a lot — but since my lenses were in, I didn’t have any extra problems. I will admit, that if my lenses had not been in I wouldn’t have felt nearly as comfortable navigating Tokyo;it’s not the most accessible place. One night we were trying to cross the street and became aware that the traffic control button for the visually impaired was in the WEIRDEST place, like I have no idea how anyone would have found it without help. And with public transit, finding the elevator/escalator is not an easy feat. So these are definitely things to consider should I go back and have a bad eye day.
But I do want to go back, and I plan to, and that’s something I didn’t think I would say a few years ago.I spent a lot of years retreating into myself as my eyesight started to deteriorate, and stuff like international travel became something that I started to fear, like other things in my life that I couldn’t control. Doing this trip gave me back a lot of confidence, not just about travel either.
One of the things I keep saying about keratoconus is that different factors make living with this disease different for everyone who has it. For a lot of folks early into it it’s not super disruptive and for others with more advanced cases it’s a daily challenge. And it’s easy to say “oh don’t let it change your life” because for many people it can and it does. But there are things you can do to make the life that you want happen and make things easier for yourself. I realized with planning, and help from others, I can tackle a lot of the fear that acts as a barrier to the things I want to do.