RheumaBlog

Same dragon, different day.

I really did. There it was, that iconic American city, turned into the real thing just by spending seven cramped hours squashed into an airliner with 200 other people. Now it was just a not-impossibly long, cold swim across the Hudson from where I stood. NYC shimmered in the westering sun, curiously weightless–even ethereal. And, like the old cliché, it was so close–and yet, so far away.

April 18, early evening

April 18, early evening

It was the evening of April 18, somewhere around 5:30 p.m. I’d spent the day inside a huge conference room at the Hyatt Regency Hotel, Jersey City, learning with about 60 other patient health bloggers/advocates how to do what we do better. The program was fantastic. The things I’d heard, seen, and learned were swirling in my head, a mix of images and ideas I had yet to separate and pin down.

And now, there was New York City. It was right there. There was a subway station and a train a short stroll away that could shwoosh me beneath the river and spit me out within a block or two of the World Trade Center. I’ve dreamed of going there for a long time to pay my respects at the 9/11 Memorial, and being realistic, I knew I’d probably never have another opportunity to do it. Sure, I still had a dinner with several of my fellow patient advocates to attend, but after that, I’d be free to board the train. In mere minutes I could be peering up at those incredible skyscrapers–including the newly finished Freedom Tower–from my own, 5’3″, wide blue-eyed perspective.

There was just one problem. I was so stiff, achy, and exhausted I didn’t know where I was going to find the energy to make it through dinner, let alone to wander NYC on foot afterward.

The fact was, my rheuma-dragon had sucked away most of my oomph. The old beast was making my hands and feet hot, swollen, and painful, and making the rest of my body feel like it had been stuffed loosely into a barrel with stones the size of fists and kicked rudely down a steep hill.

I decided to go to my room and lie down until dinner, hoping to recover a little bit of energy. And instead of ruling a trip across the Hudson into the city out, I decided I’d wait and see how I felt after the meal.

As you might have guessed, I didn’t go to NYC that night. My dragon had just taken too much out of me. But I wasn’t sad about it then, and I’m still not. I got to see that magnificent city with my own two eyes, even if it was from a distance.

And really, I got a much greater gift from the weekend than an hour inside a postcard from Manhattan: I got to meet dozens of truly remarkable, amazingly brave, resilient, selfless, loving and laughing people–and all of them fighting their own personal dragons, each of which is as big, as cruel, and as merciless as my own old rheuma-dragon.

I wasn’t the only one at the HealtheVoices15 conference who was in pain, ill, and exhausted that night–but who looked perfectly normal on the outside. I wasn’t the only one laughing and talking, exchanging anecdotes and email addresses even as I groaned inside. Every single person who attended the conference was a smiling warrior fighting a serious (and often devastating) disease, like metastatic breast cancer, ovarian cancer, and prostate cancer; leukemia, CLL, MM, and WM; HIV; hepatitis C; psoriasis and psoriatic arthritis; cardiovascular disease; IBD and Crohn’s disease; mental illnesses such as schizophrenia; multiple sclerosis; Type 1 and Type 2 diabetes; lupus; and like myself, rheumatoid disease.

It was overwhelming. Humbling. Inspiring. Seeing all these people–men and women just like me–who were not only living well with their diseases but making it their business to reach out and help others like them gave me such incredible hope for the future.

This is human kindness, love, and resilience in action. And the sponsors of the HealtheVoices15 conference (Janssen Biotech and Everyday Health) brought us all together to help us learn new (and in some cases, better) ways to reach out to others like us to offer our support, encouragement, love, and care. We learned how to protect ourselves against compassion fatigue, how to measure our success online, about how to make the best of our online resources, and how to stay on the right side of the law while blogging, tweeting, and otherwise writing for the public, and we learned about how we might turn our patient advocacy into a full-time career, if we wanted to do that.

But the best part of the conference was still the people who attended it. The biggest eye-opener, for me, was that we all shared the same feelings about our diseases and how they affect us. We’d all felt alone and isolated from the rest of the world. We’d all felt misunderstood and often minimized by society–and even the healthcare industry we depend on to treat our disease. Almost all of us had begun our journeys into health/patient advocacy because we wanted information about our diseases that our doctors couldn’t–or wouldn’t–share with us, so we started looking for it on our own, on the Internet. And we all wanted to find others like us. Once we’d found them, we were hooked.

It’s taken me several days to wrap my mind around what I learned during the HealtheVoices15 conference. It’s taken that long just to recover from the travel, renew my energy, and get my rheuma pain back down to manageable levels. But it was worth it, all of it, for the huge gift of meeting my peers and making so many new friends.

I’m just babbling, now, so I’ll bring this post to a close. First, though, a little housekeeping:

1) Jannsen paid for my travel expenses for HealtheVoices15, but of course all the thoughts and opinions I’ve expressed here are entirely my own.

2) As you’ve probably noticed, I’ve changed RheumaBlog’s design to better fit a variety of devices. (Update: I’m still working on the site, so don’t be surprised if further changes occur without notice. It’s just me.)  😉   You can read it much more easily now on your tablet or cellphone, if that’s how you roll. If you’d like to see my blogroll, more about me, my twitter feed, and archives, scroll to the bottom of the page and click the little triangular button.

4 thoughts on “I Saw New York City

  1. J.G. Chayko says:

    Wow, what an exciting amazing weekend for you. I am so glad you enjoyed the experience and I hope you get to see some of New York. I love it over there – I am such a country girl at heart, but to visit New York city was just spectacular. And it’s amazing to know I have a piece of family history there (my great-grandmother was a vaudeville actress). Now here’s a lovely thought – New York is so big and filled with frenetic energy, wouldn’t it be lovely to lose your dragon in the throng? 🙂 X

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  2. Leslie Rott says:

    I would love for you to come back to NYC sometime and see all the things you wanted to. I can be your tour guide!

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  3. Mary says:

    So glad you were there to represent RA patients. What a wonderful opportunity. Don’t feel too bad about missing the city itself. I live an hour & a half away and still haven’t made it to the memorial. Partly because it is so sad and partly because NYC just overwhelms me. I hope you have many more chances to see the city.

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  4. Irma says:

    I’m sorry you didn’t get to see NYC, but I can understand how you had no reserves left for that trip. But it sounds like you enjoyed the conference and the camaraderie, and that’s worth a lot. I will be there in a couple of weeks to spend my daughter’s birthday with her and she has instructions to plan something mellow for the evening we arrive. I know I’ll be short on reserves that day. Love the looks of the blog!

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