Tuesday, December 15, 2009

The Pied Piper of Rheumatoid Arthritis

I met our next RA warrior six years ago when I had to teach her how to start a commercial dishwasher. Ginger and I started the freak parade soon after, an informal rag tag mix of people with auto immune disease and other challenges. The woman holds a Bachelors in Music Education and is a district music teacher in addition to private cello teacher. Both a daughter of a woman with RA and RA patient herself, Ginger is one of very few people I am proud to call best friend.

Favorite thing to do:

I really like to sleep. But other than that, I enjoy hanging out with my friends/fellow teachers. We have a great time together.

Favorite pick up line:

Yeah man is NOT a pick up line that works. I just want that to be clear.

How would you classify your disability?

Physical/medical I guess. JRA affects life in different ways on different days. For example, the fact that my immune system is supressed makes my job difficult because I am exposed to so many germs and because my job with kids is so hands-on (if I didn't go move their fingers, they would sound even more like dying cats than they already do). So in that respect I guess it's medical. I have been on so many antibiotics in the last year that I've grown to hate them. Also, my kids think I'm a germaphobe because I have a rule in my classroom that "if it goes in your mouth, it goes in the trash" and I make kids wash their hands every time they cough or sneeze. Also, I constantly smell like hand sanitizer, never touch my face, and wash my hands after every single class (at least).

In the physical respect...if the arthritis happens to be flaring (which could be any time my body feels like it, any time the weather gets cold, etc.) then it's hard for me to perform normal everyday tasks like getting dressed, driving, cooking, writing, playing instruments (this is a big one in my job). Since my job entails traveling to up to four different schools a day and I don't have a classroom, it's much more of a physically demanding job than it is for most teachers. I have to be outside in the cold; I have to set up and tear down rooms by moving furniture and setting up chairs and stands; I have to carry my materials with me to every class, either from my office or from my car; I spend a fair amount of time repairing instruments and transporting them (basses are heavy, folks); and I play up to five different instruments in a day. So, that makes work hard. I also live upstairs above my landlord's garage, so in the event that I'm having a really bad flare I have Papa John's, Jimmy John's, and the Chinese place on speed dial (also, did you know that Dillon's will deliver groceries and Walgreens will deliver prescriptions? And your gay boyfriend will often deliver dinner as well? Handy things to know about). I also have a toilet seat extender handy for days like that and keep miultiple heating pads in my house and office. If I feel that I absolutely have to go to school during a flare I conduct/teach from a stool rather than stand.

Plenty of days, though, I feel just fine and am more than capable of say, reupholstering furniture, putting up Christmas decorations, going camping, or just generally kicking ass.

Does your school/boss/job administration help you to achieve your goals at work/school?

Yes-in education, they actually force planning and goals down your throat. However, despite many requests to do something about my lack of classroom (which has a more far-reaching impact than just my own physical health-namely, the educational well-being of my students) I still don't have one. With budget cuts, I'll be lucky to have a job next year so for now I'm willing to put up with this.

Is your disability on file at your job/school? If so, how did you break the news? If not, do you plan to do so?

Not officially. But I teach in a relatively small community that is very tight-knit, and everyone knows everything about everyone else. My colleagues all know about my arthritis and are actually very sensitive and helpful, and my administration knows because I've had to call in arthritic a few times. I don't know that I ever officially broke the news; I interviewed with a brace on my left wrist and have always been pretty open about it.

Would you classify yourself as in the closet about your disability?

No. I joke about it a lot, even with my kids. When my elementary kids whine about standing for half an hour it's easy for me to get them to stop by saying "hey, my body is eating my knees as we speak and I'm still standing. You'll live." Also, when I play or lead them in stretching things pop a lot and it sometimes freaks them out-I have to say something like, "sorry, my body is make of rice krispies, it snaps crackles and pops." It's also a good teaching moment for the kids-people with physical disabilities/diseases can do really cool things. And I am the coolest.

What are your professional/study plans for the future?

I'd eventually like to go back for my master's. I don't know how long I'll stay in this job before deciding to teach somewhere else where I don't have to travel between so many schools and do so much physical labor, but I've put so much in and built the program so much that I think another two years at least in my current job are warranted.

If you were to give advice to a young person with a disability, what would you say

Do what you love, even if people tell you it's a bad idea. Life is too short not to do what you love.

Ginger's "Five things you want to do before you die".

1. Attend the entire Burning Man Festival.
2. Climb Tikaboo Peak in Nevada and watch the Area 51 runway lights come on.
3. Get married and have kids.
4. Run for and serve in at least one political office.
5. Travel all of Route 66.

I hope she destroys all the evidence before she runs for office


  1. Yeahman! And i know Ginger has perfected a unique pickup line for use on mexican donkeys/fences. And perhaps men vacuuming themselves.

  2. The vacuuming man shall forever be my team captain....and the donkey shall forever be my team mascot. I really should have included on my bucket list the desire to go into business with my colleagues and open a bar called "The Teacher's Lounge."

  3. Thanks for sharing your story! I also have a story to share about living with chronic pain - you can find it at patientsdilemma.blogspot.com. Thanks for reading, and feel free to leave a comment.