I’m walking again: to the Rite Aid to get my eye drops, to Starbucks to get my mocha, and to the departure gate at O’Hare to catch my flight. I even walked through the maze of final resting places on the grounds of Fort Custer, the cemetery where my mother’s father-in-law is buried, where we paid our respects on the Fourth of July, tiptoeing over tombstones. My joints didn’t buckle. I didn’t have to scan my surroundings for an available seat. I just kept on walking, relatively upright. Each moment I walked I did so to get somewhere or to see something.  This is new; when I walk, I am no longer trying to survive stressful attempts to stay upright.


Photo Credit: Jaime Ullman

I’m walking like this because I’ve spent two months exercising with a passion. I’ve been on my back, or sitting down, or leaning over. I’ve been on a machine, the Reformer, that moves back and forth and is controlled by different-colored springs that represent the different amount of force it takes to move the Reformer’s carriage.

I’ve been doing Pilates. And Pilates has given me strength and flexibility and the confidence to keep walking.

But I have to pause after every successful workout and tr
y not to get too excited. These moments of relatively good health never last.  I’ve had RA for 34 years now, and as I get older, I find that as soon as I get comfortable with an exercise routine I have to adjust it or give it up because my body shuts down.  I know that sometime, probably sometime soon, the medicine will stop working and my knees will swell again and every exercise I’m throwing myself into will no longer be feasible.  This is the calm before the storm.

Having RA for over 30 years means that the sweat-runs-off-your-face workouts are mostly a thing of the past because feeling well is mostly a thing of the past.

But until I start to be super sick again, instead of just kinda sick like I am right now, I’m working out like there’s no tomorrow. Well, in the way that someone who still hesitates while walking down a flight of stairs works out like there’s no tomorrow.

I’ve been doing Pilates twice a week in a bright, airy studio in Los Angeles called Pilates Blue, and it’s just as serene as it sounds.  Pilates is a practice I’ve dipped into before, but never this seriously. Now, Pilates is a discipline.

I could never do Yoga. My inflexible wrists cannot handle the weight shifting back and forth. Sitting crosslegged on the ground? Nah. And I don’t want to Namaste with you.

I want to work.  I work with my instructor, Jaime, one-on-one. It’s a luxury to be able to do this but I need the attention.

The first time I climbed on the Reformer back in May I laid down on the carriage, face up and shoulders against the shoulder blocks. I was not flexible enough to bend my knees and keep them on the footbar at the front of the machine, so Jaime adjusted the springload and pushed the carriage out. I moved ever so slightly, but far enough that I could hold my knees in a position in which I could unload them.

Then the work began. I moved up and down the machine’s track in a series known as footwork. I was on my heels, the balls of my feet, then my feet were in parallel, next, rotated out, and finally, rotated in. There were few breaks and breathing was emphasized throughout. Jaime kept me on a rhythm with a soft yet encouraging finger snap.

She could tell I was straining my knees to push through the movement, and made me stop. The focus went from external muscles to internal muscles that I needed to actively engage rather than just assume they’d do the work on their own.  Once I really listened, and tried this business called “activating,” my knees were suddenly free.

Every exercise I did with Jaime was modified to account for the lack of full extension in my legs and in my left elbow. But that doesn’t mean Jaime gave up on those joints. Each week we’ve been adding a little more weight, and with Jaime’s encouragement, instead of easing up on the locked joints, I’ve pushed them ever so slightly to stretch, stretch, stretch.

And they’ve opened up. For the first time in years I can stretch my legs out all the way.

The difference in my gait is tremendous. Jaime noticed that I lifted my left hip to compensate for decreased range of motion on the right side of my body and made me work with each exercise on keeping my left hip anchored.

Now, when I walk, I think about the same thing. I notice that my left hip does hike up, so I push the sole of my left foot a little bit into the ground, and guess what, there’s less hip pain when I walk, which means I can walk farther and faster.

I hear Jaime’s voice when I’m sitting in a chair and slouching. I breathe in deeply and try to expand my ribs so that my back touches the chair. I pull my shoulders down and back, which opens up my collarbone. I hear her when I’m sitting on an airplane and breathe deeply to work some of the stiffness out of my neck. I heard her this morning when I was trotting down the street in a real slouch. Ok, that time I heard her because she was actually right behind me and told me to stand up straight.

In the words of the great healer LL Cool J, don’t call it a comeback. Yet. I’m still a broken person with serious physical limitations.  My best workouts happen when I’m feeling better. To get stronger with this disease, you have to be in a relatively good place already.

But there are things I’ve been able to do this summer because of Pilates. I took three trips by air that didn’t knock me out. On one of those trips I flew to Washington, D.C. and had enough energy to hit the gym the morning before I participated in a panel.

It’s not that I feel normal again.  I feel . . . athletic.  I’m tapped into something beyond my disease.  I resent RA for robbing me of that feeling. When I was in my teens, I’d already had RA for most of my life, but I was still an athlete, albeit one who couldn’t run very far and had to rest more than others.  I had enough endurance and muscle memory to be a slightly above average swimmer.  Before my elbow locked, I could play volleyball.  When I could still run the length of a court, I was aggressive enough to play basketball.  Now, in my 30s, the RA has ruined most of my joints.  When my knees are swollen and the RA is in full effect, no sport is really adaptable enough. But now that my RA is under control, I’m delighted to find out that through Pilates, I can reclaim some of my . . . athletic glory. My sense of self.  I wish there were competitive Pilates meets.  I’d be there.

Until then, I’ve got my very own joint whisperer to cheer me on. To Jaime and to all the others who’ve had the courage to take a look at my compromised body and still give it a shot: thank you, from the inner layers of my meniscus, and the bottom of my heart.

Here’s me with Jaime–smiling, sweating, and standing on two relatively straight legs.

Photo credit Jaime Ullman

Photo credit Jaime Ullman