My name is Seth Ginsberg, originally from Rockland County, a suburb of New York City, and now a New York City dweller. I’m 27 years old, and as of this year, I have lived with arthritis longer than I have lived without it. I was 13 years old when I was first diagnosed with Spondyloarthritis. Like most people living with arthritis, there are good days and bad days. And I waited for a good day to introduce myself to you, because someone once told me that I should always walk into a crowded room wearing a smile. Here I am, smiling and glad to be here. Even if here is on the World Wide Web.
You should know that I’m not a stranger to sharing my story on the Internet or, for that matter, holding hands with people who have arthritis. I am the co-founder of CreakyJoints (http://www.creakyjoints.org), an arthritis advocacy group, social network Web site and non-profit foundation created in 1999. You should wander over there and sign up for our free newsletter and join us for educational and support programming.
I was 18 years old when we started CreakyJoints – the idea came to me as I sat in bed, awake and in pain. I felt isolated living 200 miles from home, up in Boston, a freshman in college… I was frustrated that I felt so vulnerable, especially when I knew so many other people could relate to what I was going through, though everyone felt so far away. Back then, the Internet was in its infancy (remember when you had to dial-up and you kept getting a busy signal?), but we knew it was the right vehicle to connect people all around the world living with the many forms of arthritis. We’ve all been there – the good days and the bad days – and CreakyJoints was created to focus on the positives, to shine an optimistic light on reality as an arthritis patient and to collectively “bring arthritis to its knees.”
I’m a very different person today than when I first introduced myself to the arthritis world. For starters, I can legally drink (alcohol) now and even rent a car without paying an underage penalty. I’ve also grown accustomed to living with constant, chronic pain. My limitations remain pretty much the same: I can’t play sports, climb too many steps, carry anything heavy or, on bad days, open a jar of pickles (which is too bad, because I really love pickles). Reminders of my arthritis pop up all day long; at work when I am sitting too long at my desk, after an airplane ride or, dare I admit, when I lean in to kiss a date goodnight. Living with arthritis means living with surprises, and a painful “pop” of a joint during that awkward kiss is a good way to describe how arthritis can make an unwelcome appearance.
Today I live in Manhattan. I’m single, lonely at times but never far from people who understand. So I’m not in a position to complain, and I almost never do. I’ve always found it better to be funny than annoying (even though the two often intersect) and focus on the things that make me smile instead of the things that piss me off.
My mother, Emily, knows quite well what I’m going through, because she lives with Rheumatoid Arthritis. We take turns taking care of one another, though she wins the award for “stubborn Jewish mother of the year” who too often refuses to let anyone fully take care of her and tell her how to take care of herself. I watch her live with RA and over the years, the particular ways that she has adjusted to the changes in her hands and her hips. Nevertheless, she is one strong woman and the source of my inspiration. Since becoming a grandmother (not of my doing) she has a renewed youth, though on days when she has a flare, I see her limitations. Nevertheless, that doesn’t stop her resilience and positive outlook. I like to joke with my father that I “get my looks from my mother and my personality from my mother.” He doesn’t find that amusing.
We’re all a bunch of strangers brought together by a common feeling of pain, aches and limitations. Though let me be clear: this ain’t no pity party. I’ll see you here and over at CreakyJoints. Let’s do this together.
Co-founder of CreakyJoints