When I was a senior in college, I was just like any other student. I wanted to finish up school. I was already thinking about becoming a journalist, and was looking around at newspapers I might want to work for. I was always an overachiever, something of a perfectionist, and I was eager to start my career and establish a future. But right around that time, I started getting sick. One time, I fainted. Another time, I had a seizure. I had aches and pains that simply would not go away. And what was incredibly frustrating is that the symptoms were vague. It could be anything. It could be nothing.
One incident I recall very clearly is going to the local library, and as I was climbing a flight of steps, all of a sudden I lost control of my legs. I could not keep climbing. I ended up grabbing the railing in the nick of time, before I fell backwards and badly injured myself. It was clear, then, that there was something going on and I had to take it seriously. That was the start of a very long journey.
I was diagnosed with lupus and with RA, and the next few years I spent traveling from doctor to doctor, hospital to hospital, up and down the East Coast, trying to find a treatment regimen that would work for me. I went to the Hospital for Special Surgery in New York. I was in Boston. I went to Yale. I went to the Mass General. I visited Johns Hopkins in Baltimore. Eventually I was also diagnosed with a rare neuromuscular inflammatory disease, polymyositis, as well as fibromyalgia. My body just wasn't responding to any sort of treatment, anywhere.
To put it in perspective, meanwhile, up until that point in my life I had never really been sick. I hadn't had chicken pox as a kid. I had never broken a bone. I had never even had a cavity.
In the midst of all this, I still managed to get a job as an entry level newspaper reporter, working a Sunday to Thursday schedule. There was a time when I was doing IV treatments and would spend Friday and Saturday in the hospital. Nobody at work had a clue that any of this was going on. I had these two separate parts of my life.
I've been fortunate to work for one place for the past decade – my local Board of Education. The first five years I worked in Adult Ed; then I became transportation specialist, meaning I'm the go-to for parents and staff regarding anything to do with pre-K to high school busing, including field trips, et cetera. And recently I started helping the district's media relations department. I write news releases for local media, and articles for the district's weekly e-newsletter. I've finally come full circle with what I originally started out doing!
I've always tried to be independent. That's important to me, the same way it is for most people. But you also learn to compromise. For example, I'm a homeowner, but I had to accept that a small house, with an upstairs and a downstairs -- which is what I originally envisioned -- would be too much for me to maintain. So now I have a one-level condo. It's accessible, and in many ways I have the best of both worlds. I have my own place, but somebody takes care of all the things that I could not do on my own, and I focus on the household.
A key lesson in all of this is that it really takes time. I have spoken to people who have been newly diagnosed and I've told them that they shouldn't expect to come to grips with their condition, or even to find the right treatments, right away. I've had my share of pity parties and angry moments. But one day, perhaps a year or two ago, I realized that I'm more than okay with who I am. I still have a lot of issues, especially in terms of the constant pain and exhaustion. But overall, I've come to grips.
I've spoken to many people over the years who have told me, "Oh, I don't know how you do it. I could never do what you do." And I always tell them, "Yes, you could -- because you wouldn't have any other choice." The fact is, you don't know what you're capable of until you are put to the test. And what I've learned is that the human spirit is incredible. It really is.