Category Archives: Accessibility Issues

Avoid the Sun and Listen to Your Mother: A lupus cautionary tale (#HAWMC 17)

Today’s HAWMC prompt is dear to my heart because I have learned many, many Butterfly Lessons the hard way.

Learned the Hard Way. What’s a lesson you learned the hard way? Write about it for 15 today.

My favorite hard-headed story is about the sunbathing. Probably anyone who has ever heard of lupus knows that one of the illness’ distinguishing characteristics is sun sensitivity. To sum it up in a catchy phrase:

“The Sun is not my friend.”

I am pretty good at minimizing sun exposure, but must admit that I still love to travel to sunny places. I have gone to the Caribbean several times and even went to Hawaii and Tulum, Mexico (which is crazy hot).

Each trip I managed by keeping out of the sun during the heat of the day, always wearing a hat and sunscreen, and become best friends with beach umbrellas. The trips have gone well though I sometimes get sick towards the end.

For me, sun exposure is kind of like Russian roulette, because I don’t get sick every time (but when I do get sick, it is very, very, bad).  For example:

•    I took a trip to Miami and basically only went from the airport to my hotel.  I was curled up in the bed with stomach pains for 2 days.
•    I went to the Epcot Center and waited in line to get into the park for about 15 minutes. I only made it about 100 hard yards into the park before I was overwhelmed by pain. I had to return to the hotel and stayed in bed for about 2 days. (I am kind of sad that I never actually got to see Epcot and am trying again this summer. Maybe I can get a Drs. note to bypass the line?)
•    I went to Myrtle Beach, South Carolina and walked from the car to a shopping center and had a flare. I was sick the whole rest of the trip.

In all three cases above, my sun exposure was minimal, but the pain was maximal. It hardly seems fair. But one family trip I took in graduate school ended badly when I completely ignored my common-lupus-sense and ignored my mother’s sage advice (recreated below) . . .

Mom: Katina, do you think you should be in the outdoor pool so long in a swimsuit? You know the sun makes you sick.

Katina: Why are you such a kill-joy? Can’t you see I am enjoying myself? Can’t you let a sista hang out with her cousins in peace?

Mom: Ok. It’s your funeral.

On this trip, I didn’t get sick right away. I was lulled into thinking that all my pool-side sunbathing would have no negative consequences. But I was completely wrong. When I went back home, I had a “fatigue” flare and could not get out of bed for an entire week.

Katina: Mom! I’m sooooooo sick. And I live alone. Why, Why, Why do I feel so bad?!?!

Mom: I told you so.

The Butterfly Lesson: Avoid the sun and listen to your mother.

Take care,

Katina Rae Stapleton

Advertisements

Am I too invisible for accessible seating?

The Backstory:

Last year I wrote a blog post called “I need a do-over” about the perils I face when I have to stand on the commuter train all the way to work. My commuter train has double-decker cars with about ten seats on each end that don’t require going up or down stairs. The “no-stairs” seating area can be used by anyone, but is supposed to be prioritized for  people with special needs. 

The Wheelchair/Cane Guy Incident:

Sometimes my legs feel perfectly fine and I can stand all the way into DC, about a 35 minute ride.* But if I am having a lupus or fibromyalgia flare, my legs sometimes feel like someone has hit them with a car. On those days I really need a seat.

One day last week I got on the train with my legs feeling a hot mess. So I took my own advice and sat in the first available seat, which happened to be in the accessible seating area. I rode the train happily until we reached the second-to-last stop where someone in a wheelchair was being helped on the train by the conductor.

The person seated next to me got up so that the wheelchair could be moved into our two-seat row, but nobody else moved an inch. I didn’t move either, because I was waiting to see where the conductor wanted to place the chair. It could go in the 4-person section I was sitting in or the 4-person section across the aisle.

Right across from the aisle from me (also in a wheelchair accessible seat) was a guy who walks with a cane. “Cane Guy” started waving at me to get up and move even though 1) the wheelchair could have just as easily replaced Cane Guy’s seat as mine, and 2) the woman in the wheelchair was still being helped onto the train. Cane Guy just kept waving at me and I started to feel uncomfortable, like I had done something wrong. Finally, I did something I immediately regretted. Instead of holding my ground, I got up, walked up the flight of stairs, and found another seat. 

It was very surreal for me because I give up my seat all the time for people with wheelchairs when I am feeling well. But that day my leg hurt and I felt a wave of disgruntlement, especially towards Cane Guy. As I limped up the stairs, I thought to myself: “My leg hurts! Bad! Why did I have to move? I have just as much of a right to sit on the ground floor as you do, Cane Guy! Does your leg hurt as much as mine?!?.”

I got even more upset when I realized that not only was Cane Guy still sitting in the accessible seating area, so were four other people who could have moved instead of me. 

I have never felt more invisibly ill than I did at that moment.

To Cane Guy and my other seatmates, I probably looked like a perfectly healthy person who should have been willing to give up her seat without question. After all, I did not have a health challenge that they could easily see.

At the moment I gave up my seat, I couldn’t think of what else to do besides refuse to move and create a scene.After all, the woman’s wheelchair did have to go somewhere, and my seat was one of the two best options (Cane Guy’s seat was the other).

What was I supposed to say? “Excuse me, I may look healthy (and fabulous), but I am really an invisibly ill person who is having trouble standing and navigating stairs.  Can one of you move instead?” Well, actually, that is what I should have said, but I didn’t think of it until I had already moved and was mad, mad, mad about it.

As I stewed in my seat, I decided while it was too late to say something to Cane Guy, it wasn’t too late to say something to the conductor. So when I got off the train, I waited to speak to the conductor and told her I had felt pressured by Cane Guy to give up the seat I really needed. She was actually quite kind, but noted that there was no visible signal (like a wheelchair or a cane) to indicate that I also needed the accessible seating. While I agreed with her in principle, I wondered if this could have all been avoided if there was some way that I could indicate being “physically challenged” without having to tell my entire health history on a public train. While I love blogging about living with Lupus, I have no desire to tell my fellow commuters about it just for an accessible seat!

I finally came up with a future option that strikes the balance of providing information without over-sharing. If someone asks me to move for a wheelchair and I am not up to it that day, I will simply say: “Can someone on this level switch seats with me? I don’t mind moving for the wheelchair, but because I have a disability I also need a ground-level seat.”

Has something like this ever happened to you? What did you do? What do you think I should do in the future if I face a “wheelchair vs. my seat” dilemma?

Take Care,

Katina Rae Stapleton

* The irony is that Lupus and Fibromyalgia are so fickle that sometimes my legs are so painful that I can barely walk and other times my legs are strong enough for me to dance the night away. By this weekend my flare had passed and I was able to go to a party and dance for much of the night. Go figure . . . .