As a break, I thought I’d jump back to more present day things.

Like many people around the country, I have been swept up in March Madness. This may seem strange to those of you who read my blog – why would a former ballet dancer now arthritis patient and writer be caught up in the NCAA men’s basketball tournament?

The WVU Mountaineers.

My father and mother are WVU grads and I start the MFA in Creative Writing there next year. I grew up watching WVU sports with my dad. We still get together on football Saturdays to watch the Mountaineers or tune in to ESPN when they’re on in other sports.

But for any of you watching this year’s tournament, the Mountaineers captured more than it’ alums and fans attention. This “bubble team” which was 8th over all in it’s conference, The Big East went all the way to the Elite Eight, and only went down in overtime to Louisville, coached by Rick Pitino, one of the legendary couches in the sport.

Bigger than this accomplishment is that they did this by winning games away from the home court, taking on 13 ranked teams and beating 8 of them. The experts picked them to lose every time, or at best nearly every time. If there was a memo that they were suppose to lose, the Mountaineers certainly didn’t get it.

They beat Wake Forrest in double overtime, a team that many experts thought should go to the Final Four. The ousted Texas Tech, coached by Bobby Knight. All experts expected them to lose these games – many predicted by blowout proportions. They played tough in the first round against Creighton, a team who has been to the tournament 6 times in the last 7 years.

Bigger than this is the fact that the Mountaineers accomplished this without any “stars” – no All Americans. No players that were nationally recognized. They did it by playing as a team. Every game a different player made the difference. Eight players were a threat to hit three-point shots. Team. A refreshing word in a world that seems to be diving headlong into “me first” type celebrity.

Each time they played, I watched. I found myself being amazed that they could beat teams stacked with talent, with larger, more athletic players and big time coaches.

The team’s coach, a man unrecognized until this point by the sports press, had coached at every level. At one point, he coached a small college team where he also drove the bus to away games.

Besides the fact that I’m attending the university next year, or that I grew up as a fan, I think this team represents some things that tie right into my feelings and thoughts as a rheumatoid arthritis patient.

1. Never give up. The team never gave up or gave in, no matter what talent they faced or what the experts said would happen. They practiced and worked and proved them wrong. I think as a person with a chronic disease, this is an important reminder that life only gives in to RA when I give up on my ability to live the life I want. Things are not easy. The challenges are always present. If I give in I will lose. But if I don’t, I will have victories. Tenacity is key.

2. Put together the right team. Coach Beilien of the Mountaineers said that in recruiting he’s looking for good kids first. If he has the right kids with the right attitudes and they buy into his system, they’ll be successful. I think the same is true for me with my RA. My team is my doctors and other health providers, family and friends. I think that we forget that as patients and as people we owe it to ourselves to find people who care about the outcome. I won’t work with a doctor who is so clinical that he or she doesn’t see me as a person, but only as a diagnosis or a patient. I look for support from people who understand my goal is to live a fulfilling and productive life despite the fact that I have RA, rather than perpetuating the victim mentality. It’s all about surrounding yourself with the right players and working as a team, in concert with one another.

3. Dig deep inside for strength. The Mountaineers had more than their fair share of nay-sayers. Networks probably wanted flashier, easier to hype teams. Analysts wanted matchups of the coaches they called “legends.” The players and coaches at WVU kept coming together as a team, but as their post game interviews also showed, they looked for strength within themselves. They believed. Having that belief in yourself is a powerful thing. It’s easy to be negative about the circumstances when your heading out on the court to play a bigger better team or if you’re battling your RA and trying to get out of bed and make breakfast. Sometimes you have to believe you can and will get better before you do. Mike Gansey, one of the players for WVU stated playing basketball for another college, whose program fell apart. He found a place at WVU, sat out a year because of NCAA rules. During the Mountaineers’ incredible run, he called it “a dream come true.” Like him, those of us with chronic disease have to first dare to dream. Then believe. You have to believe it when you can’t sleep because of the swelling and pain of your joints. But if you can’t imagine a better tomorrow, a better outcome, you will never get it.

Lately my RA has been acting up – my knee is swelling again and sometimes I need my cane to walk. But I’m not giving up or giving in – not after my bout of March Madness with the WVU Mountaineers.

Basketball isn’t saving the world, but in a way, it saved me. It helped me stave off depression from going backwards from my RA. It gave me something to look forward to and the players offered a great example of overcoming the odds. I just loved watching them.

If basketball and sports don’t get you excited, then find something else that will. Find that point of inspiration, apply it your world. You might be surprised how something wholly unrelated brings you the answers to questions you didn’t even know you were asking.

As for me, well, I can’t wait to see the Mountaineers play next season – in person.

7:15 pm

Tonight’s actives finish with a buffet-style dinner and presentation by a leading arthritis researcher. In line for the buffet, Joanna and I talk to women from Milwaukee, Wisconsin area. I also talk to a woman from New York that knows Nick Turkas from our chapter. Actually, many people here know Nick and he is very popular, which isn’t surprising to me. He’s super dedicated and exceptionally knowledgeable. I think he’ kind of like a rock star in the Arthritis Foundation world. And, he is a big part of the reason I’m here at this summit.

Dinner includes a sort of pasta and alfredo sauce. There’s also pizza, which is most likely for the kids, but I take a slice too. Joanna and I find a table with some empty seats.
I’m a naturally chatty person; I have the gift of the gab. Across the table I meet Jennifer, who is here from Maryland. Actually, she can just drive in, since technically she is from the DC area. Jennifer is a young beauty, pale, porcelain skin, deep brown eyes and long dark hair. She accentuates these features with a pink turtleneck sweater. We chat about why we are here. Jennifer tells us about having her neck fused.

Next to her is David, from Indiana. David is forty (I find this out later) but looks much younger than this. He has a friendly face and a well-groomed beard. He’s and engineer working for a major drug company. He tells us he has had arthritis since he was a child.
I tell a bit about me, but mostly we talk about the day, the overwhelming nature of sitting in the classroom trying to learn everything. We talk about how bad weather is coming; we’ve all heard about it over the break. We munch on our dinners, hit the dessert table. I drink a decaf coffee.

After most people have had a chance to eat, the kids are shuffled off to another room for an ice cream sunday party. The evening’s presenter is announced, Dr. Tuan.

I had thought that maybe I could slip out early and not sit through another presentation. I’m tired. It’s been a long day. Dr. Tuan begins, and to my amazement I forget that. He’s a compelling and engaging person, even though what he is presenting is way above my scientific understanding. His talk? Cell-based Tissue Engineering Approaches to Cartilage Regeneration.

In English? Dr. Tuan is figuring out ways to repair joints without the current replacements. He’s growing bone and cartilage in a lab.
He’s a slight man, with glasses and an authentic smile. He’s also at ease with the microphone, something I had not expected from a researcher.

He talks about using mesenchymal stem cells in his research. These ARE NOT from embryos. In fact, there are many kinds of stems cells that can be researched and embryonic stem cells are only one kind. Mesenchymal stem cells can be found in all sorts of tissue and can be extracted from bone.

Dr. Tuan explains that they have to make a kind of scaffolding to take the mesenchymal stem cells and grow it into bone. “We’re building a house,” he explains, “and then we invite the cells to come in. The cells come and put in their furniture and rearrange themselves and multiply.”

He makes it sound so easy even though it happens on a nanoscale level. He shows us pictures of the samples he’s grown in the labs. His goal? To help the body regenerate tissue damaged by arthritis rather than use artificial replacements. “The body doesn’t always respond to metal joints,” he says. He is passionate about regenerating joints – this is his life’s work. I feel better knowing that folks like Dr. Tuan are coming up with this stuff. He has a sort of way about him that makes me think of Steve Erwin, the “Crocodile Hunter.” I expect for him to say, “Crikies!” at any moment.

The Arthritis Prevention, Cure and Control Act will ensure that folks like Dr. Tuan will continue their research.

After the presentation, I’m tired and ready to go back to the room to relax. Joanna has been eagerly waiting to watch The Oscars, something, she tells me, she does every year. We turn on the television, I half watch, scribbling in my notebook. I call my husband to check in. Matt’s been doing home improvement projects all day while I’ve been gone.

“I miss you,” he says. “Emmie misses you too.” Emmie, our beagle is sitting is his lap. He doesn’t have to tell me this, it’s something I know. I’ve been gone less than 24 hours but in this moment it feels like days have passed since I’ve seen them.

Joanna and I agree that Cate Blanchett is the most glamorous looking star at The Oscars this year. Dressed in a golden gown, she looks like the stars of old – pretty, glamorous, full of promise.

Monday, February 28, 2005

9:15 am

We are supposed to be paying attention, but I’m scribbling in my journal again.

This morning we have presenters and this afternoon is our debut on The Hill. Or first presenter is Mark Shields, who I guess is a famous political pundit. Being notoriously non-political, I have no idea who he is, but I think he has a show on CNN or something. So far, he’s talked mostly about the war in Iraq and I’m not making the connection about this and what we’re here to do. Maybe I just don’t get politics.

We are sitting in the big ballroom/classroom again and Stephanie is to my right. I like that we’ve met up with her again – there is something so reassuring about her presence. I have a coffee and a cough drop, pen poised and my journal. That’s as prepared as I can be.

I notice that Joanna is making notes; not about the Shield’s talk but about what she is going to say on our visits. Dressed in a black turtleneck, skirt and silver bead necklace, she has a determination and professionalism about her that I find impressive. I need to be more like Joanna, I think, if I’m going to do this advocacy thing the right way. I silently thank Nick for getting the okay to send both of us. Alone, I would be lost.

After Mark Shields, we have a cluster of presenters – former congressional staffers and a man who helped get legislation passed for ALS. This is interesting to me because it seems more relevant to what we’re here for. I wish we could role play some more, like we did during the Soapbox presentation. The former dancer in me longs for a dress rehearsal.

We are told that we will meet with mostly staffers. Congresspeople spend Mondays and Fridays in their districts and then come to DC for Tuesday, Wednesday, Thursday. We are assured that the staff people are just as good, if not better, than meeting with the congresspeople themselves. I take this at face value – the staffers I met at the state level were less than impressive, but I’m willing to be open to the idea that this is a totally different scenario. Joanna says, “You want to meet with the health aid or the legislative directors. Those people can actually get something done.”

Between these break out sessions and lunch, we run into Jennifer from Maryland. She looks stunning – in a chocolate brown suit with chinoise trim and a turtleneck. She has a sly smile, she’s ready for action. “Good luck,” she says as we enter the line for our buffet lunch.

My Story

When I was 22 I was diagnosed with rheumatoid arthritis.

When I was a little girl, I was like many other little girls, I dreamed of being a ballerina. This doesn’t make me unique; in any year I’m sure tens of thousands of little girls dream of being a ballerina, painting their rooms bright pink with satin slippers sewn on the linens. Moms enroll them in classes; purchase those Barbie ballet bags, which are really stiff boxes with a shoulder strap and separate compartments for their slippers. The little girls, like me, pull their hair back into a neat bun at the nape of the neck, revealing fresh, expectant faces. Ours are the dreams of tutus and tiaras.

But what is unique to me from the thousands of other girls who once dreamed of stages and costumes and pirouettes on pointe is that I was willing to do whatever it took to be a ballet dancer. Teachers were quick to point out my faults – “You’ve got great feet, but need to work on your flexibility” - but what I had more than anything was determination. I was willing to commit myself wholly to the world of ballet and make it my world.

I kept journals. I cut out pictures from Dance Magazine of the dancers I wanted to be like. I wrote down the things I wanted to improve – higher extensions on developées, double pirouettes - and tracked my progress. I wrote down my feelings – I’ll never be as good as her; if only I could make my ankles stronger I’d be better one pointe; she said I needed to shed a few unwanted pounds, but how? I gave up on football games and cheerleading and dances and drama club. Those were for others. Instead I fit in an extra class and fell asleep, face first, in my chemistry textbook.

There was some success. I was probably never destined to be a prima ballerina for New York City Ballet or American Ballet Theatre. But I auditioned and made training schools and companies. I studied away from home. I took roles in The Nutcracker, Sleeping Beauty, Cinderella.

Unlike the dreamers, I was a do-er!

A dancer knows that at any time her body could give out. Between the ages of 19 and 21 this was happening to me and I couldn’t understand why. I was too young. My teachers and artistic directors thought I was lazy, that I didn’t care anymore. I went to a sports medicine doctor and he put me on rest for six weeks and painkillers. I was depressed.

My mother, who I often fought with growing up about the importance of ballet over a traditional education, had kept me in school. This became a sort of salvation, a break in the routine of being sore, in pain and frustrated. I tried to think of what I was good at in school. I decided to take a poetry class. The English department of the university where I was taking classes suggested I take Intro to Creative Writing instead. I was a little discouraged – I loved poetry – but thought it would be an okay replacement.

Of course it was better than a replacement. I think perhaps, it was fate, or God. It was something beyond my ability to choose, but within the scope of being able to be guided.

The class was taught by a writer named Susan Neville, who literally changed my life and view of myself. Susan showed me my inner writer – that former ballet dancer who scribbled everything into notebooks – and she showed me how to take the discipline of my earlier days and put it into this new vocation. She might not know that she did this for me, but she did. I spent hours every day writing. I read books she recommended. I listened to her, enraptured, as she ran workshops, read from other’s work and her own.

Success came in new forms. I received a scholarship for my writing; I published a little. I graduated with honors with a degree in English and concentration in Creative Writing.

I don’t know if life typically gives us second chances, but I think I had a second chance at being whole. A second chance at being creative.

I miss ballet – it was all I knew or wanted to know for so many years. The dancer in me never dies but the ability has completely. I have grieved and mourned this fact for ten years. But I would never give away my writing to have back my dancing.

In the end, my official diagnosis of rheumatoid arthritis came in an unlikely way. One evening I sat reading. My legs were stiff, my knees and ankles visibly swollen. The pain was intense. I can’t handle this anymore, I decided, and got into my little red Saturn and drove to an urgent care facility. The doctor, a middle aged black man with a gentled touch and reassuring face, told me he had recently seen a lupus patient. “You might have something like lupus,” he said. “I want you to see a rheumatologist.”

He set the appointment and sent me home with an anti-inflammatory, which worked to a small degree but the swelling was still present when I went to the rheumatologist. All it took was one visit, one blood test.

On the one hand, there was closure, but also fear, sadness, frustration and uncertainty. Had it not been for Intro to Creative Writing, for Susan Neville, for my inner drive to succeed and years of scribbling in a journal, I might have lost it. I might have been nothing more interesting than a statistic.

People like me need care and medicine. We often need handicap parking, aids for walking, workplace adjustments. But what we need most is hope. Hope is what keeps you really living. Hope keeps you ever present in the world.

My name is Renée, which is the French word for “reborn.” I was born to dance and destined to write. I am still writing.

Afternoon

We get started with our “program” with speeches by various people from within the Arthritis Foundation. I know this is standard fare for this kind of thing, but really I don’t quite get the point. I don’t feel inspired by it. I don’t know these people and they don’t know me and certainly all this is for ceremony’s sake – we’re not getting information about advocating by listening to this person or that person. I’d rather listen to the other people in the audience and understand why we are all here.

After a couple of these intro speeches, we get into the advocacy agenda. The two main presenters of this information are Kevin and Jennifer. Kevin is the Sr. VP for Advocacy for the Arthritis Foundation and currently has a whopper of a cold. Jennifer looks to be about my age – early 30s, and is the VP of Advocacy for the Arthritis Foundation. Seems like a lot of designations, but what do I know.

Even though Kevin has a cold, I like him better as a presenter. Jennifer seems to know her stuff but comes off as glib. We talk a lot about kids who have arthritis, which is very touching. Having the benefit of a “normal” childhood, one without arthritis, I can’t imagine what they go through.

But on the other hand I am made to feel, during this presentation, that it doesn’t really matter so much that I have arthritis. My story isn’t what they care about or are looking for. I’m sure this isn’t what they mean, but it is how it comes across. You, Miss Adult, don’t count as much. You’re not a good photo op. Of course this is never said but it is how I feel as I sit in the back of the ballroom. I wonder if anyone else feels this way.

The one piece of information that sticks out to me, that makes my stomach drop ad makes me want to cry, is this: 50% of persons with RA stop working within 10 years of diagnosis.

I know that the legislative angle is to put people back to work, get them paying into the system. But there is a harrowing side of this, harrowing to me anyway, which is the feeling that you’re just a vegetable, that you can’t contribute or count anymore. This scares me. I want to count. I don’t want to think that arthritis is going to make me the kind of person who isn’t productive and meaningful.

At the break, I meet up with Joanna, and just seeing her familiar face, the jaunty wisps of blonde hair and her quiet smile make me feel better.

Joanna and I make friends with the woman sitting next to me, Stephanie, from Oklahoma. Stephanie is the kind of person who it is easy to be around, even if you’ve just met her. Pure kindness seems to radiate out of her, and I think it might be her eyes, large and brown and a bit like a doe. We find out she works for a chapter of the Arthritis Foundation in Oklahoma and this is strangely and wonderfully reassuring. There is something about her that encourages ease, and we strike up conversation with her.

Feeling better, I venture into the lobby with Joanna in search of coffee.

Soapbox Consulting

Our next round of informational sessions on how to be effective arthritis advocates is run by an outside consulting firm called Soapbox.

Christopher Kush is the President of soapbox and is one of those well-dressed guys with bubbling enthusiasm. And although it feels a bit fake to me, it’s not glib, and so I kind of go along for the ride, which is easy to do from the back of the ballroom. Let it all wash over you.

The point of his presentation is to keep us “on message.” This means we need to get our legislators interested in signing on to the Arthritis Prevention, Cure and Control Act of 2005, which we covered with Kevin and Jennifer. But instead of giving us an overview of policy, we get a dose of grass roots communication.

Basically, what we are taught to do is make either a formal argument for the bill or tell a personal story. The format is simple: hook, line, sinker.

I am always a little suspect of clichés, but the hook, line and sinker basically is this – you introduce yourself (especially if you are a constituent), you tell your story or make your talking point in argument for the bill (according to Christopher, a personal story is an implicit talking point for the bill) and then you make a request – that is ask for them to be a co-sponsor.

He picks two people from the audience as volunteers for each approach – formal argument and personal story. He deliberately picks a person whose personal story he knows – a mother from Wisconsin whose child won a contest by Oscar Meyer. She and her son, who has JRA, wrote an essay saying what they would do with the Oscar Meyer Hotdog-mobile and $5000. They wrote that they wanted the Hotdog-mobile at their town’s Jingle Bell Run for Arthritis to help increase awareness. And the $5000 was to come to advocate here.

I thought this was a heartfelt story; the mother made a great case because she and her son, did something to try to make a difference. And she wasn't on a script. It was real.

I also knew that to be most effective, these stories should be worked on and crafted – that some of the most important details were probably the ones that never got into the story. This, I know, from being a writer. I thought for sure they would work with us on this.

Instead, they broke us into groups. One person in the group left the room to learn to be the part of “The Senator” the rest of us were to come up with our argument or personal story.

Joanna told our group, “Wait until Renée tells her story.”

7:19 am

Up at 6 am to catch my flight. Even before the RA I have never been a morning person and now with RA I’m even less of a morning person than before. So Matt stops at Caribou Coffee to get me a large skinny latté for the ride to Columbus International Airport. I manage to dribble a little on my coat, a pea coat that is thankfully black. I try to sop it up with a little napkin with a Caribou Coffee “Espresso Truth” printed on it. A day without coffee is alike a day without coffee.

I made it through security O.K., with the taking off of shoes and all. This is mostly because there were not tons of people taking off early Sunday morning. The shoes thing, while necessary, is a big pain in the butt for those of us with joint issues. I should have worn slip on shoes, but even then it’s not easy with a swollen knee. But I don’t begrudge the airports the security check… it’s just difficult, that’s all.

Maybe they could have a “special needs” line so we wouldn’t feel like we’re holding everyone else up. Of course the woman in front of me has two overstuffed duffels as carry-ons, while I have only a seek tote.

They did have chairs to sit in during post-security re-assembly, which was nice.

My flight doesn’t take off until 8:05, but I’m happy to sit and wait.

8:14 am

In flight. As a snack I’m offered a tray loaded with packets of mini-pretzels or a biscuit/cookie type item. I select the latter, something with the trade name “Biscoff.” Incidentally, Biscoff’s wrapper shows that it has a website, Biscoff.com. Everythign has a website now, including the cookie/biscuit type airplane snack. Cyberspace certainly did blow the world open to every and all possibilities and in turn is populated with everything conceivable. This seems to be a weird thing for a blogger to contemplate, since I put my ongoing inner narrative into cyberspace and I’m wondering if it is healthy to take a break from my computer.

Actually, I’ve taken to naming my computers; my current computer is “Gatsby.” I wonder if my Gatsby dreams on the green light at the end of the dock like the Gatsby of Fitzgerald’s book did.

I feel like I should be reviewing some political policy or new arthritis breakthroughs while in flight, but honestly I don’t have that kind of material, it’s too early, and I’m still worried about my knee. So I munch down my Biscoff and wash it down with a mini-bottled water with the Delta Airlines logo on it.

10:15 – Fairmont Hotel, Washington DC

This hotel is downright swanky!

After checking in, I went through all the cool amenities in our room. Joanna and I are sharing a room, she is not here yet having spent Saturday visiting with friends and family in the area. The bellman set my little roller suitcase on a stand next to valet, where I hang the blazer I intend to wear on the Hill tomorrow, and carefully drape my pants and skirt so that hopefully they are not wrinkled beyond repair.

The bathroom is large and has a scale (I still weight 125 lbs, the weight I’ve been pretty much since I quit dancing and was 110 lbs and considered, “chunky.” I now am still weight conscious enough to always step on the scale - the old habits die hard and in my soul there is still a part of me that is a dancer. Occasionally I dip down to 122 and up to 128, but almost always right about 125 lbs and 5’5”). There a little bottles of shampoo and bath gel emblazoned with the hotels ornate “F.” There is also two fluffy bathrobes, plush white terrycloth with gold corded borders and embroidered with a crest-like golden script “F” like on the bath gel bottle. I slip one of the robes on over my clothes just because I can.

Back out in the room I leaf through the in-room food service and am somehow excited by the idea that for $15 I can order gourmet macaroni and cheese to my room. This is inordinately exciting.

I end up taking a shower because I want to play with all the room’s features and feel that layer of travel grime over the surface of my skin. There is nothing like a hot shower after flying and travel. Even the tension in my knee loosens and I feel a little bit like a celebrity with a towel around my head and the big fluffy bathrobe edged in gold. I slip on my big oval sunglasses and look out the window into the sunny morning.

After getting primped and dressed, I got to the lobby to sit and write and people watch. First I go to the hotel gift shop and buy two postcards – one for my husband and one for my parents, write a few lines and give them to the concierge to send out. I’m only gone for three days and two nights, but it is my habit to send postcards, especially to Matt, whenever I am away. It makes me feel better than being apart from him.

I have a tea in the lobby and camp out in a lavish wingback chair near a large window looking out to a courtyard with topiaries. I can’t tell if I’m surprised or impressed that this is where the Arthritis Foundation is having us all meet for the national advocacy summit. The tea I’ve picked is peppermint and is soothing and warm to my tongue.

I love hotel lobbies like this, fully of the dull hum of chatter, the coming and going, the anonymous feeling of sitting and observing. This is where the writer in me feels like she’s in her heyday.

A cluster of people sit further down the lobby from me, set up on wing backs like mine and a couch/settee type thing. Two women, one young, one old, and three men, two younger-middle aged, the other grayed well. The young woman sits as if holding court, a thin elegant type woman smoking a long cigarette between her fingers. It surprises me to see her smoking, which is odd because I don’t know her. Smoking seems like something from another era, something that is out of place in public unless it is a panic-stricken alley smoke, hidden and contraband.

This cluster of people converse in a language I don’t recognize.

Two other women walk down the long expanse of the lobby. As they pass me, the comment on the décor. “It’s good design,” says the one to the other.

I think the lobby is rather opulent, although I must admit that I prefer mid-century modern and so my view is tainted by this preference. It strikes me as odd that I’m thinking about my design preferences instead of focusing on why I’m there – arthritis advocacy. But that doesn’t get started until 1:30pm, and I have this morning to just be in the lobby of the Fairmont Hotel. And the lobby says to me “luxury,” with its sense of being away from home and in a capitol city. It looks the way I imagined the Vice Presidential mansion from Ann Patchett’s novel, Bel Canto.

I have a way of always relating things in life to stories and books and movies. My imaginary life and my real life blend together.

Someone in the lobby is smoking a cigar, even though there is a sign asking guest not to do so. I can’t see the smoker but the smell of a cigar is distinct – sweeter and fuller than cigarette smoke.

By the concierge is a little dog house and on a leash is a black lab. She begins to bark. This seems like an odd thing to happen in the lobby of the Fairmont. I go up to see the dog and see that she is the hotel’s service dog. Her name is Maggie. Maggie comes right up to me and her handler at the concierge station says, “You must be a dog person.”

I nod. “I have a little beagle.”

“Those dogs are so cute!”

Immediately I feel homesick for Emmie, even though I’ve been away only a few short hours. I feel far away from my dog and my husband, from my little house and my quiet life inside it.

1:20 pm

I’ve taken a seat in the back of a ballroom where we’re getting ready to be primed on how to advocate. I’ve gotten a tote bag full of stuff and a name tag, so I suppose that makes me official. I put my tote on the chair next to me to save it for Joanna. We’ve not met up yet, but she said she wouldn’t get in until later so I’m not worried. Plus, she has my cell phone number, so I figure she’ll call if we don’t meet up soon.

A man is duct taping some wires to the floor in the isle. The ballroom is set up with rows of tables and chairs. The room hums with the chatter of people who know each other. Currently I know no one.

In the front of our ad hoc classroom are two enormous screens, and then row on row of tables and chairs becoming more and more full.

A woman asks if she can sit next to me and I say, “Sure” and she puts her tote and coat over two chairs next to her because, like me, she has not met up with the people she knows.

I have not found Joanna at the time the session begins. In a way, it feels good to just get this thing started, although I feel anxious and I’m not sure if it is because I haven’t met up with her or just because the real reason for my visit has started and I feel vague and small in a room filed with people.

8:45 pm

Have just taken another shot of Enbrel. My right knee seems to need it - it’s puffed up like had slipped half a grapefruit just under the patella and looks like its swelling and squashy under there. Blech.

Have packed a little roller-suitcase of clothes and essentials. The essentials include all sort of sample sized items from a pre- travel Target shopping spree, and other good stuff, including:

A mini bottle of Scope
A tiny “Morning Burst” facial wash – with micro beads (sounds like fun!)
A tube of Colgate Total Plus Whitening in travel-size
A new toothbrush
Oral-B Brush Ups (in-between meals brushing solution – just fit them over you index finger and polish away)
Extra sugar-free gum in Wintermint
(I think my travel purchase show a slight fixation with oral hygiene. I like to think of it as having my smile picture-perfect for snapshots in government offices)
Razor
Miniature bottle of Herbal Essence Shampoo and Infusion 23 leave-in hair treatment (for shinny, healthy locks!)
Travel Sized Soft ‘N Dri Antiperspirant/Deodorant in Baby Powder scent
Trial Sized atomizer of Beautiful perfume by Estee Lauder (not from Target, but left from a prior gift with purchase gimmick by the cosmetic counter)
Travel first aid kit
Glysomed hand cream and Lubriderm Sensitive Skin Therapy for Dry Skin
A tiny pallete of eye shadow
A tube of Almost Makeup, SPF 15 by Clinique
Stilla Pressed Powder
MaybellineWaterproof Mascara with mini wand
Chapstick
Three tubes of lipstick and one gloss
Trail mix
Snack sized peanut butter crackers
Black sunglasses
Clothes for the hill (business casual)
PJs
Jeans – just in case there is any time to hang out
Flight and hotel info
My journal
The novel I’m currently reading
Pictures of my husband and my dog
Digital camera
Vitamins
A prescription bottle of prednisone (just in case the swelling doesn’t quit or gets worse)

How I fit this in a tote and a little roller suitcase, I have no idea. But there are peanut butter crackers stuffed in a pair of my shoes.

I’m worried about my knee – it’s been swell-y and weak for the last couple of days and I don’t know that tromping about Capitol Hill is going to make it much better. I have a fear building in the pit of my stomach about representing my local chapter of the Arthritis Foundation in Washington. Sure, I’m going with Joanna, who’s been before. But what do I know about advocating but one day at the Statehouse (with naive expectations). I’m not even a very political person (a friend actually asked me this week if I knew where Capitol Hill was. Very funny. I’ll have you know I voted in the last election, too).

But what if I screw up?

The Enbrel shot goes as well as expected. The needle sinks into a roll of skin I’ve pinched in my thigh, and I depress the medicine under the skin. Some time pulling the needle back out is worse than plunging it in, but I try not to think about it, have a cotton ball and band aid ready.

My husband Matt has purchased me the collectors DVD of Chariots of Fire. This is one of my favorite movies and so I decide to watch it before falling asleep, hoping to be inspired. It’s the story of two Olympic runners and what drives them. One is driven by his desire to overcome what he feels is the stigma of being Jewish. He feels denied and uses running to prove himself. The other is a missionary who feels that he honors God through his running. The latter is more inspiring, but the first is probably, if I’m at my most honest, most like me. Always something to prove.

I found out, by checking out all the extras on the DVD, that the actor who played the missionary/Olympic runner is dead – and quite young (the credits say 1949-2000). This makes me sad. His character in the movie, Eric Liddell, refuses to run in his 100 meter qualifying heat on Sunday because he believes it is the Lord’s day. While showing the other runners, the movie voices over his sermon, from Isaiah 40: 31

But they that wait upon the Lord shall renew their strength;
they shall mount up with wings as eagles;
they shall run, and not be weary;
and they shall walk, and not faint.

Sometimes I wonder if I will ever renew my strength. But I like the idea of this passage, and Eric Liddell’s devotion. He ends up winning a gold medal for the 400 meters, an event given to him to run so that the English Olympic committee can save face. In a surprise to everyone but him, he wins.

I like the idea of this too – surprising everyone and winning.

So before I drift off to sleep, before I panic that I won’t wake up early enough to catch my flight, before I decide that I have no business being an advocate because I don’t know much about the process, I think about Chariots of Fire and wonder what winning is in my world.

(picture of me in my late teens, warming up in the ballet studio)

“There’s the life you live, and then there’s the life you live after that.” – from the movie, The Natural

I’ve returned from my trip to DC and this quote from The Natural is stuck in my head because I feel like that is what I was there to do – tell the legislators and staff that life I led before RA and then the life I lead now that I have been diagnosed. I will be writing about this more and more, I am sure. But for now, I want to share this picture, which illustrates more than I could ever say.

I’m really worn out. But over the next days I will write in full about my experience on Capitol Hill, which I’m pleased to report was very enjoyable as well as eye-openeing. Things work differently on The Hill.

I’d like to thank all the people I’ve met with over the last couple of days, including the following:

From Deborah Pryce’s office, Shiloh Roehl
From Pat Tiberi’s office, Adam Francis
From Steven LaTourette’s office, Ryan Berger
From Sherrod Brown’s office, John Sawyer

These legislative directors and aids were all kind, knowledgeable and sincere. They listen to our stories and request with interest and compassion. They were helpful and informative.

I’d also like to thank Abby from Senator De Wine’s office and Neil from Senator Voinovich’s office for meeting with us and for listening and sharing their thoughts and recommendations.

I also am very thankful to Senator De Wine for meeting with us, and in particular listening to my story and for agreeing to look at the newly introduce Arthritis Prevention, Control and Cure act sponsored by Senator Bond’s and Senator Kennedy’s offices.

In the next couple of blogs you will hear stories about three days of meeting with legislative offices and connecting with other patients with arthritis.

I want to offer a couple other thank you’s to the folks I met and worked with these past few days:

Stephanie from Oklahoma, David from Indiana, Marty and his mom from Pennsylavania, Lori from West Virginia (A Mountaineer Is Always Free!), Jennifer from Maryland, The fabulous crew from the Ohio Valley chapter of the Arthritis Foundation, Monica from California, Leona from Florida, and all the others. You are all fabulous and have importantly have wonderful heartfelt stories to tell.

I also want to thank Glade Pauley from Hudson Ohio, who I was privileged to attend every legislative visit with, who was ceaseless in his ability to be generous, helpful and compassionate. You were tremendous!

And most importantly to Joanna, who got me into this (yeah!) who is a wonderful woman, and accomplished veteran on the hill, and who is beautiful in every way.

I must rest now, but the stories to come this week will make you think, make you feel and hopefully make you want to be involved.

C’mon, I need travel sizes. I have RA, for heaven’s sake and I can’t be asked to lug regular size toothpaste, lotion, facial scrub and other assorted amenities around airports and hotel lobbies.

Despite the fact that my luggage is on wheels.

Despite the fact that I could probably get a bellhop to help out.

I’ve been achy and swelling all week, and honestly, Target was a good, bona fide reason to get out of the house (at least in my mind it was). Besides the fact that I haven’t finished the chapter in my yet-to-be finished novel that I said I would finish, come hell or high water, before I left. Fact is, other than this blog and a few emails. I haven’t really written all week, which is really odd for me. I’ve got loads of excuses – swollen knee, headache, general ache, fatigue, stress. Pick one or pick them all, they are still all excuses.

It’s the linoleum-floored, fluorescent lighted expanse of Target that seems like the answer to my combined RA symptom/ mind over matter lackadaisical quandary.

First, I hit the “Hot Spot” a little section where you first walk in filled with specials that cost roughly $.99 each. Then to the isle between health and beauty with all the sample sizes. A miniature bottle of Scope (you have to have minty fresh breath to advocate, right?) and a small tube of Colgate Total Plus Whitening (for that 5000 watt smile to flash at senators/congress people/staffers). Then a tiny tube of facial scrub (with all the inherent pleasures of microbeads!) Mini shampoo and conditioner, mini hairspray, mini bottle of extra strength Tylenol – Oh my! A little first aide kit (be prepared!) and cute little aqua (my favorite color) case to pack it all in. I’m in heaven, and who knew heaven was inside Target?

It seems like much ado about nothing. And maybe it is. But for me, it got me out, got me going, got me thinking like Mary Tyler Moore – I’m going to make it after all!

Now, if I just make my flight on time and advocate with the voracity of shopping for traveling supplies!

And Emmie the Beagle? She got a bag of treats shaped like mini t-bone steaks. Sometimes it is good to be a beagle!

I’m a naive arthritis patient, getting ready to go to Washington to advocate. I leave on Sunday and I’m feeling rather Mr. Smith-ish.

After the visits to the state representatives, I think I’ve got a bit more of an idea of what’s in store (staffers! Smiling staffers!). But I’m still wet behind the ears when it comes to advocacy. I’m learning each time I get engaged with advocacy projects and I’m finding just how little folks really know about arthritis - Folks who make decisions on policy or work for the policy-makers.

Nationally, the Arthritis Foundation supports several advocacy priorities, which you can read about on their site: http://www.arthritis.org/advocacy/priorities/default.asp.

I’d like to think that my visits will impact the lawmakers who represent me. I’d like to think that the personal narrative is important to these decision makers. In truth, I may not meet with any legislators, with anyone who will remember anything about me past the few minutes of Q & A that might occur.

So why, like Mr. Smith, am I going to Washington?

Rheumatoid arthritis affects 1 in every 100 Americans. It is three times more common in women than in men.

RA shortens the life span by three to ten years.

Up to 85% of people with rheumatoid arthritis are unable to work by the 11th year following disease onset. Nearly 30% of these patients become disabled within the first three years after onset.

The direct medical costs of rheumatoid arthritis approach $5 billion (that's billion with a "b"!)annually, with nearly 70% of these costs attributable to hospitalizations and home nursing care.

Rheumatoid arthritis patients make more than 9 million physician visits and account for over 250,000 hospitalizations annually.

Lost productivity costs due to rheumatoid arthritis approach $20 billion annually, and rheumatoid arthritis patients lose, on average, 50% of potential earnings – think of the lost taxes, social security, etc.

So, if I don’t go to Washington to at least try to get the message out, who will? And who better than me, someone whose life is affected?

I’m planning on taking a journal and keeping a diary of my advocacy experience. Stay tuned for updates…

Joanna chairs the committee and she and I will be going to Washington D.C. Feb. 27-Mar 1, 2005 as part of a national advocacy effort. But today I did my first real advocating, here at the state level. I really didn’t know what to expect.

I met up with Nick from the Arthritis Foundation and several other advocates: Andrea, a fifteen year old girl with Juvenile Rheumatoid Arthritis, her mother, and Oralia, another RA patient like myself. The five of us had appointments with three different state representatives.

Well, let me restate that. We had appointments with their offices; we met with none of the representatives themselves, but their aides or staff people. We met with these folks during the afternoon today during scheduled visits as part of Ohio Health Advocacy Network. Earlier, other RA patients and advocates met with other offices and one group actually met with a representative. Although maybe they would have been better off meeting with the aides – the representative actually aid to them, “Well you could be worse off.”

Hey buddy, let me tell you we HAVE been worse off and are here to tell you exactly what being worse off is. Being worse off is like Oralia, diagnosed two years ago. She was so weak her daughters had to hold her like a baby to get her out of bed. Or Andrea, who had to have injections into her elbows so that the joints didn’t totally disintegrate. What dreams have been shattered for him?

Luckily I didn't meet with that particular politician. I would have been happy to take a hammer to one of his joints so he could feel first hand what it was like to wake up one morning with the kind of joint pain that we’ve all felt from RA. But, he wasn’t on my list and I’m sure security would have let me in the building with a hammer.

The first meeting I went on was with the representative from my district, number 24, Geoffrey C. Smith. Of course we didn’t meet with him. His staff person was courteous and asked thoughtful questions. He told us that he didn’t know much about arthritis, which we filled him in on. Not knowing to expect a staff person, I felt slighted that Mr. Smith didn’t see us himself – being that TWO of us were constituents from his district (I can name three others with RA in district 24 without even thinking about it). On the Ohio House website, his affiliations are listed and include the National Conference of Insurance Legislators – Health Committee Chairman.

Hey Mr. Health Committee Chairman! I’ve got a HEALTH issue, I live in your district and you blew me off.

Here’s the thing – I’m not the face you think of when you think of Arthritis – neither is Andrea or Oralia. Andrea is fifteen and an adorable-looking high school sophomore. I’m a 32 year old former ballet dancer. Oralia is a mother who used to play three hours of tennis a day. So if he thought that only old people had arthritis issues, he’d be wrong. If he thought it wouldn’t be a good photo-op, he’d also be wrong.

Considering his insurance/health affiliation, he should have met with us. We consider arthritis to be a non-partisan issue and one that has very important economic ramifications. Many arthritis patients want to work and be productive (politician speak – work and pay taxes, social security, etc.) and need support of programs that help us get the therapies and work environments that we need. Arthritis is the NUMBER ONE cause of disability in both Ohio and the US. THREE MILLION of us in Ohio have a form of arthritis. While we weren’t there today to push any particular piece of legislation, it would be important to listen to us? Why? Some very simple reasons.

One, is to know what is going on with constituents and their health. If all THREE MILLION of us with some form of arthritis were unable to work and went on welfare, it would be a huge strain on the economy. Furthermore, most of the issues we have are with getting the right medications and occupational help that keep us employed and paying taxes, rather than draining them. Through different agencies, many of the occupational needs of people with arthritis can be provided without any cost to the employer. Additionally, the three of us who came to talk with the representatives were all on a therapy called Enbrel. Enbrel is a therapy called a biologic and helps to combat the effect of RA by being injected subcutaneously, or under the skin. Synthetic proteins in Enbrel attach to receptors called TNF in white blood cells, which causes them not to attack healthy joint tissue. Enbrel doesn’t work for all RA patients, but it worked for all three of us who met with the staffers today.

Enbrel is not covered by Medicaid. 10% of Ohioans with RA rely on Medicaid to cover their arthritis treatment. In this case bureaucrats, instead of doctors, are making critical therapy decisions.

I noticed that Representative Smith had a degree in Political Science from The Ohio State University. No mention of any medical background. Curious that he should have more say with what a patient might receive as a therapy for arthritis than that patient’s doctor.

Furthermore, many insurance companies require that you try other (insurance speak – less expensive) therapies than Enbrel, which costs over $1200 per month.

Maybe I’ve been a little tough on my representative, but I have to say I did feel slighted by the fact that he didn’t meet with us. I know he's busy, but we're busy too. Considering today's events,I’m thinking when I go to Washington at the end of the month that I won’t get to meet with Congresswoman Deborah Pryce or Senator Voinovich, but some well intentioned staff people.

I noticed that Congresswoman Pryce is part of the House Cancer Caucus. Perhaps she would open her eyes to the less publicized but widespread issues of arthritis too.

On her site, she (or her staff) writes:

Dear Colleagues:

The House Cancer Caucus will work to educate our colleagues about the many issues surrounding cancer. We will work through Congress and, hopefully, with the Bush Administration to advance federal policies that further cancer research; improve prevention, diagnosis, and treatment; and enhance the quality of life of cancer patients.

Perhaps these initiatives could apply to those us with arthritis, too?

I was happy to see that there was a link to the new Medicare prescription drug bill, which was signed into law on December 8, 2003. While this legislation makes it possible for seniors to get therapies like Enbrel to patients on Medicare, it does not address the needs of those of us who do not qualify for coverage under Medicare. But it’s a good start. Maybe meeting Joanna and I would help our representative to see that arthritis is not just a disease that affects elderly citizens.

Senator Voinovich’s website also touts the Medicare legislation, which is a good place to start. His other initiatives are largely non-health related.

Today’s visits were a good starting point. Nancy, the aide to State Representative Mitchell, was very aware of arthritis issues. She suffers from osteoarthritis and was able to relate her experiences. She listened intently to our stories and offered suggestions on how to get the word out. She was enthusiastic about our visit. She was our last appointment of the day, so we left on a high note.

For someone who has not really looked at my condition from a political perspective, today was an eye opener. I don’t think most people have any understanding of who has arthritis and what we go through. The thoughtless representative who said we could have it worse may be an extreme example, but I think about how political people cajole us, feed us information on the topics they want us to think of as important to them. But what about us? Could I have it worse. Definitely. But before I get that reaction from someone, I want them to consider my story – consider me. And maybe that is all any of us who live with a condition really want.

I've also been getting ready for the Arthritis Foundation's Jingle Bell Run, which is being held this Sunday. I've put together a small team, just under twenty people, to run or walk. And I'll be there – walking not running- the first time I've participated with my team. In years past I've put together a team and then worked as a volunteer at the event. But this year I'm walking the 5K. Wish me luck.

I'll keep you posted on how it goes! Until then, listen fo our Jingle Bells.

About Advocacy

Wednesday night I attended another Arthritis Foundation Advocacy Committee meeting. Nick from the AF had us armed with folders from OHAN - Ohio Health Advocacy Network - and we devised a plan for meeting with out state legislators. All of this is like taking a begining Civics course for me (do they even teach Civics anymore?). It all begins with getting in front of elected officials so they know we are here and who we are. My fellow advocates are all people who have been doing this very thing for much longer than I have - I'm definitely the weak link in the chain - but I'm energized by being around them. And I found my way to contribute! But that will be for it's own entry in the blogosphere... so stay tuned.

Dr. Higgins, the pediatric rheumatologist who is a member of our committee, is always giving me information to ponder, and Wednesday night was no exception. She explained to me that there are only 150 pediatric rheumatologists in all of the United States. Only 150! Some states have no pediatric rheumatologists... kids with dieases like Juvenile RA end up seeing health professionals that may not have the best background to help them.

Best of Ohio Writing

I'm happy to report that Ohio Writer, the publication that puts out the "Best of Ohio Writing" awards has recognized a piece of mine, "Holiday Landscaping." I'll include it at the end of today's thoughts.

Other Random Thoughts

I noticed on the auto-immune section of Health Diaries that there is an alarming fact - 75 % of all auto-immune diseases occur in women.

Mallory, another writer here, gets much more interesting spam than I do. I always get spam for new mortgages and offers to buy medications from Canada. Also, Mallory, congrats on finding Vegan candy corn!

Check out www.arthritis.org about the Jingle Bell Run - you can run, walk or volunteer!

And, here it is:

Holiday Landscaping

I think my mother secretly wishes to be miniaturized.

She is busy decorating for Christmas. Decorating starts on her birthday in mid-November. She hauls up box after box from the basement, from shelves marked "X-MAS, DEPT. 56." The process doesn't take hours, it takes days to complete. She is a Christmas junkie, and I have to admit that after her hair grayed she did bear a remarkable resemblance to Mrs. Claus.

Today she has received a gargantuan box from Bronner’s, the World's Largest Christmas Store. Driving on the highway from Columbus, Ohio begins the every five to fifteen mille barrage of billboards for Bronner's, starting around the exit for Bowling Green and continuing over the state line. Then, driving into town you are greeted by a sign that says, "Welcome to Frankenmuth, Michigan's Little Bavaria," immediately followed by the bigger-than-a-football-stadium sized Bronner's Store. They've taken Christmas and Super-Sized it.

At the corner of the property where Bronner's is situated is a replica Silent Night Chapel with the first verse of the song in about a zillion languages, including Irish and Scottish Gaelic, Swahili and several Native American tongues. Past the chapel, there are signs for parking held by little mannequins of elves, complete with tireless smiles, peaked hats and unrealistically rosy cheeks. At night the area around the giant store is illuminated with ten-foot soldiers, choo-choo trains and evergreens all done up in tiny twinkle lights -- even during the summer months. All of this indicates that these are not the kind of Christmas people to be taken lightly.

Bronner's is part of the reason I think my mom wants to be miniaturized. During a family reunion in Frankenmuth, my mother-in-law (another Christmas junkie, first class) introduced my mom to Department 56, conveniently sold en masse at Bronner’s. Department 56 is an entire empire of miniatures based on Christmas. There are villages with lightly snow-covered castles, factories, houses and bungalows. There are itsy-bitsy people playing in the snow. There are elves training reindeer to fly. There are diners that serve Coca-Cola, as well as Starbucks and Caribou coffeehouses; tiny trees, snow covered fences, and all other effects of yuletide delight in diminutive proportions.

The miniatures are amazingly elaborate. Some are mechanized - gondolas that travel from the Christmas tree to the village, or reindeer that fly around snow-crusted lodges. With "amazingly elaborate" comes "amazingly pricey." To keep the purse strings continually loosed, Department 56 systematically introduces new items, while retiring others. Retired items require immediate purchase. They are now collectables. Mom eagerly filled her cart.

I reminded her that we must all fit into the car at the end of the Frankenmuth visit. Mom was undaunted. She went to a customer service counter and exclaimed, "Ship it!"

Now, back in her own version of Winter Wonderland, Mom places a Lilliputian-proportioned building on one of many shelves now dedicated to her Department 56 pride and joy. The building is a pint-sized factory - a Crayola factory. Its turrets are primary-colored crayons. It has a crayon fence and staircase. Around the Crayola factory Mom places little crayon go-carts driven by elves.

"Look," she says, "they're having so much fun."

I can see she wishes she had a miniature crayon go-cart. She places the Tinsel Factory next to the Crayola Factory, creating an industrial section for blue-collar elves. At the end of the elfin factory row, she places the Egg Nog Pub. The elves now have a place to go after a hard day's work. It's quite thoughtful of the needs of the elves, although she ought to know the effects of too much nog mixed with Crayola carts.

For Christmas my brother and his fiancee will visit; he will bring their Great Danes. The Danes, with their giant wagging tails, are the most perilous natural disaster to face the tiny yuletide landscape according to Mom. I can hear the elves screaming now, "Look out," and "Innnn-commming!" Mom counters the threat of dogs by making available shelving space higher than tail level- not an easy feat where massive canines are concerned. But she will go to these lengths to preserve her perfect holiday landscaping.

Slowly, Department 56 will creep over every free shelf space in the entire great room of my parent's home. My father, who I believe secretly has dreams of minimalism, will be surrounded by Mom's miniaturized holiday hideaway, hindering his ability even to set down his drink.

Christmas is a magical time of the year where clutter becomes all the rage. Perhaps it just wouldn't be Christmas without all this decorating, or as I would call it, crap. It amazes me how taste and preferences don't seem to make their way through the gene pool. I like vast, clean surfaces, usually with one decorative object and plenty of glass or stainless steel. I would be happy with a circa 1950 pink aluminum Christmas tree with bubble lights and nothing else. Mom wrinkles her nose at the thought. For her, holidays and miniatures go hand in hand.

Mom's creation becomes more elaborate after each passing twelvemonth. When she cannot go to Bronner's she calls them with requests and directions to "Ship it!" My father, giving up on all hopes of free space, buys her Bronner's gift certificates for every gift-giving occasion, which at each time received will be considered the BEST GIFT EVER. Implicit in this gift is the ability to purchase more loot for the village.

Gift certificate in hand, my mother scans the Internet, checking out dwarfish domiciles, considering carefully which she would most like to inhabit if she were only 5 inches tall.

The world functions, in part, according of the "natural laws" of physics. They make sense to me, at least, the low-level physics I learned in high school. Gravity, for instance, is a concept I get. It's the reason I can stand on the Earth, as opposed to floating around the atmosphere. Velocity – speed and direction – makes sense to me. But my favorite law of physics is Newton's Third Law of Motion:

For every action, there is an equal and opposite reaction.

This strikes me as a law with application broader than just as a law of motion. It feel like a social law or a psychic law, something maybe akin to karma. I've been thinking about Newton's Third Law, lately, as I've been writing about RA. Why? It seems like the more I write about having RA, the more I write about why I write. Could it be that my "equal and opposite reaction" is my RA and my writing?

The idea of an equal and opposite effect to a condition like rheumatoid arthritis is a powerful concept to me. According to Newton, in the physical world, whenever objects A and B interact with each other, they exert forces upon each other. So A gets a force and B gets a force and where they meet they create the concept of action and reaction. Action and reaction, working together, create all sorts of good results. A fish can swim through water because of action and reaction. The fish uses its fins to propel itself through water, but the water itself accelerates and helps push the fish through the water.

The more I write about RA, the less power and control it has over me as a person. As I gain control of my destiny as a person, I continue to write and my identity as a writer makes me less susceptible to defining myself through my disease. It almost hurts my head to conceptualize this in the language of physics and yet oddly satisfying and rewarding (more action and reaction working? Could be!).

Think, for a minute, about another application of Newton's Third Law: you can't touch something without being touched back by it. There is something delicate and interactive about this concept of touch and touching. It is the same as writing – the writing isn't complete until someone reads, understands and then reaches their own conclusion about what the writer is saying. Every action does have an equal and opposite reaction.

When I first thought about having RA, it was very one way. There was just the force of it working on me but no opposite and equal reaction. I think in non-physics terms, that I had to choose to be the equal and opposite reaction. And that's what makes people different than the other stuff in the world. Choice. Free will.

So the more I write about RA the more I discover about myself as a writer. And the more I touch things in the world, the more I'm able to be touched back by them.

Physics. Isn't it grand?

Productivity. This is the concept that I'm struggling with.

Dictionary.com has all sorts of useful definitions for "productive." Culled from these results, here are a few to ponder:

Producing abundantly; fertile.

Yielding favorable or useful results; constructive.

Of or involved in the creation of goods and services to produce wealth or value.

Effective in achieving specified results.

Bringing into being; causing to exist; producing; originative; as, an age productive of great men; a spirit productive of heroic achievements.

These are all interesting and important definitions of productive. If I felt I was living up to any one of these definitions I'd probably have that feeling of productivity!

I could blame my lack of productivity on the recent cold snap. It's not a bone-chilling cold or even the freeze the little hairs inside your nose cold. It's more of a shiver when you take the dog out to do her business cold, a remember to wear a coat cold, a winter isn't here but all the leaves are knocked from the trees cold. I usually increase productivity in the cold weather – add a gray sky and I seem to be able to get a ton done. I don't know why. Perhaps the warm sunny days are too much of a distraction.

RA is a perfect thing to blame for a lack of productivity. But If I blame my RA, my stiff knees or my stiff wrists, then I've given in to it. Every day seems like another opportunity to slip into that trap of "I can't because I have RA." And this just isn't how I want to live my life. I just can't let myself be defined by RA. I don't want to pull up dictionary.com and see me if I plugged in "rheumatoid arthritis."

It can't be an excuse. A challenge for sure, but never an excuse.

Outside, it is still a shivery 40-some degrees and the sun is trying to peek from behind my neighbor's tall evergreen. Inside, I'm wrestling to peak from behind the shady limbs of a non-productive day.

One of the things I remind my students is that in writing, rejection is a part of the life. It's a bigger part than any writer really wants to admit to, but to be a writer, you have to face facts -- more of your work gets rejected than accepted. To really be a writer, you have to love the writing itself. For me, the true satisfaction is in the process of writing rather than the results (although, seeing your name in print can be satisfying too, very satisfying!).

I've been thinking about my students, who are unafraid to try and try again at this writing thing and it makes me a little ashamed to admit my own fear. You see, I've been accepted to the Master of Fine Arts program in Creative Writing at West Virginia University. They've given me a great financial package, which includes teaching. I'll have the time to write, with mentors and a community of other writers. It's such a blessing. It's something I really want to do, dreamt about. So why do I feel like I now have to confess my fear over it?

Fear might be the most natural human emotion. We fear what is unknown. Sometimes we fear what is known. As an RA patient, I'm always fearful of what will happen to my health. What if they find some horrible side effects to Enbrel, the therapy I'm using to control my RA? What if I have a flare up that causes such awful joint damage that it will be difficult to function normally? What if my health care costs go through the roof and I can't afford treatment?

My fears about RA fuel feelings in inadequacy. I think we all have esteem issues from time to time and mine are always linked backed to having RA. I shouldn't feel that I'm not pretty or smart simply because of the disease, but the truth is sometimes those feelings snowball with feelings of fatigue, frustration over not look or feeling "normal" because of RA or just the pain of swelling.

Writing has been my refuge from RA. But now, looking at this MFA and looking to try to advance my small skill, I’m so afraid! What if my refuge becomes a tormentor? But then, if I don't do it, I've already failed at it.

What am I truly afraid of? It's a complex thing. I already write, send out my work and gather lots of "no thanks" letters… many more rejections than acceptances. And I'm okay with that. I already participate in a critique group, so submitting my work for workshop review shouldn't be too scary, and I'm eager to get suggestions and comments. I already teach, so teaching at the university should be the next step in development. When I type this out it all seems so natural, so thought out and reasonable. But the feeling inside is shaky – I have to move, my husband has to find a new job. We have to sell our house, and find a new place to live in a strange town. Should we buy or rent? What if I get there and can’t hack it? What if the stress gets to be so much that my RA goes nuts? What if I get through the three years of the program and still get piles of rejections but my writing doesn’t improve? (Okay, this is among the least rational, but in those moments of quiet desperation, it creeps in). What if the actual experince doesn't live up to my expectations?

Sometimes I shock myself by continuing to move forward, despite all the fears mounting up. I just have to have faith, because I know I want this. Faith is stronger than the fear. Maybe that's how I get through my RA, too. Maybe that's why I can work with my young students and reassure them it is worth writing even if there is lots of rejection. Hope doesn't get nearly the good publicity it should. At the heart of it all, I think I hope for things and my hope pushes me to action. That hope - hope for writing success, hope for a cure for RA, hope for happiness for my loved ones, hope for my young students' success - comes from a place inside me that I can hardly understand, but often rely on. Hope is stronger than statistics or odds.

This morning, I wrapped myself in my cuddly but old bathrobe after getting out of a warm shower. My face still showed the drowsiness of sleep, small purple circles under my eyes. I sipped coffee from a large red cup as I brushed my teeth and ran a comb through my wet, long hair. I went through the motions of getting ready for the day, kissed my husband as he left for work. All of this is the normal and mundane - safe and secure. Routine can make fear seem less potent. But I could wake up like this any day and not change. This change, my fear, make routine seem pretty attractive. But I have a race to begin, not one of speed or distance, but a race against my fear and doubt. Right now I'm just preparing...

One of my favorite movies is Chariots of Fire, and in it one of the main characters, Eric Liddell, an Olympic runner from Scotland has a great line:

"Where does the power come from to see the race to its end? It comes from within."