Why My Rare Condition Puts Me in a Complicated Relationship With My Legs

I have a complicated relationship with my legs, because sometimes they just seem like these “things” that are disconnected from the rest of me. These limbs that aren’t behaving the way I want them to. These appendages that are causing me nothing but trouble and pain.

I sheepishly admit that until I was 34 years old, I took my legs for granted. I had always assumed they would be there to do what I needed them to do. They always had been, and I figured they always would. As it turned out, most of my part-time jobs required a great deal of lower body strength. I used to tell my students that I could stand and wait for them to quiet down in line, because I had worked in a flower shop and was accustomed to standing for hours. It was true. My legs supported me as I stood throughout my whole shift. The flower shop didn’t even have a break room; between customers, I ate while leaning against the back counter or in times of real desperation, sitting on the floor. And then there was my part-time library job. At my interview, my future-supervisor warned me that the job would be physically demanding. I emptied the outside book-return bins, pushed carts filled with recently returned books. I’d stand or squat or even sit on the floor to re-shelve the books in their proper places.

Then there was college. I did it differently than anyone else I knew, meaning without a car, for more than half my college years. I didn’t often enjoy a leisurely stroll across campus. Getting to the bus stop on time was essential. I quickly walked to and from the bus stops, and often stood when the bus was crowded.

On our one international trip, I worried about my high school French being adequate, but I never worried about my legs’ strength and stamina. After our transatlantic flight and riding a bus to the Opera District, Paul and I wheeled our suitcases behind us as we wandered the streets searching for our hotel. On another day, we explored the Louvre and walked from the museum, down to the Champs-Elysées and to the top of the Arc de Triomphe (though I had thought there was an elevator). We walked and explored the city I had dreamed of visiting since I was an elementary school student and had written a country report about France.

A couple of years later, I became pregnant, and my body did just as I expected it to. My legs kept me up and going throughout the pregnancy. I took my fourth grade students on a walking field trip six weeks before Ryan was born, so they could meet their pen pals at a neighborhood park. And then, Paul and I walked into the hospital on a Sunday afternoon, my mom’s birthday, just two days after I had said good-bye to my students and I thought I still had a week to go before Ryan’s birth.

But that was all before.

They say your life forever changes once you have a child. And that is true. But, I can also look back at my life and see another defining moment. Another before-and-after.

It was a Sunday morning in July. Paul took me to the emergency room when I woke up with my left calf freakishly swollen and tomato-red and me unable to stand. My calf had felt tight for a few days, but none of us could have guessed that suddenly my life would change and my legs would never be the same. Paul put me in our desk chair and wheeled me out to the car. We dropped Ryan off at my parents’ and went to the hospital.

And that was the beginning. Or the end.

I’m not sure.

We’ve been dealing with this for eight years. That means for most of Ryan’s life, I have lived in pain.

And now, most of the time, I’m just angry at my legs. I blame them. All these additional health issues, all the prescription bottles on the kitchen counter, all the doctor’s appointments, all the phone calls to insurance companies and to schedule additional tests. It’s all my legs’ fault. Everything is harder than it used to be. I can’t just do what I want to do, whether it’s go for a walk or get down on my knees and weed my garden.

Though at the same time, I know I take my legs for granted. I don’t give them nearly enough credit for all they still do, for all they still allow me to do. I take Ryan to school each morning, and pick him up each afternoon. Paul and I go for our Thursday morning coffee dates, and we hold hands as we walk and we talk. I get in and out of the car each day — taking care of errands, taking care of my family.

Yet, for all they do, my legs are also fairly unpredictable. I never know how they’re going to feel, how I’m going to feel, when I wake up each day or as the day continues.

Why is one day so much worse than another?

Why are some trips to the market so much more tiring than others?

Why do my knees creak loudly on some days and not all days?

It’s become difficult for me to make plans and then to keep those plans. Because I don’t want to be the party pooper who backs out of a family visit to the Norton Simon Museum or a monthly lunch date with my friend Evelyn.

I’m disappointed that my legs didn’t keep their part of the bargain and stay healthier. I felt I did my part, health-wise. I never smoked, only occasionally enjoyed a peach margarita or a sour apple martini, and even those have become a part of my past since my medication prohibits consumption of alcoholic beverages.

When Ryan was an infant, I’d lie back on the pillows on my bed, and sit with my knees bent. I’d put Ryan against my knees and, face to face, we’d hold hands. I’d read to him. I’d sing to him. I’d show him family photos in his squishy, Baby Einstein-brand photo album. And the whole time, my legs were supporting my little angel. Now, on the rare occasion Ryan wants to sit on my lap (usually when he’s hurting or sick), I bite my tongue but nod my head and let him. I’m not going to say no to those close cuddles and hugs, but they’re hard to do. I know he’s older and growing, but it’s not just him. It’s me. It’s my legs. I’m just not as strong as I used to be.

Now there are days I twist around in the driver’s seat, and place my hands under my left thigh and hoist my leg out of the car. I do it the way Grandma used to. Grandma, who in my memories was always an old woman, who sometimes wore a wig, used canes and a wheelchair, who lost her breasts to cancer and had rheumatoid arthritis.

I really don’t know what’s going on inside of my legs. There are times I pull up my pant leg and watch my muscle twitch as if some alien was inside pushing my leg back and forth, in and out. One night it happened while Paul and I were reading to Ryan before bed. Those twitches felt like contractions, each one more painful than the one before. Why? And why did it have to be then, on one of the special nights when Paul was home from work in time to be a part of the bedtime routine?

I wonder, though, if my legs are equally disappointed in me and my bad attitude, because I’m not always very nice to them. I stand in front of the mirror, and all I see are flaws. The red, blue, and purple veins. I look with distaste at the 2-inch-long scar on my upper left calf. I often stare at them, looking for swelling and checking for signs of something else being wrong.

Maybe my legs are silently protesting when I choose to take the stairs instead of the elevator. But I’m scared. I haven’t forgotten, probably never will forget, the morning I spent 55 minutes trapped in the school elevator. And how a few days later, another teacher looked at me and said, “I wouldn’t get in there again.” But there are days I don’t have a choice. Some days I can push and climb the stairs, and some days I simply can’t. Maybe my legs are mad at me, because though I hang a disabled placard when I park my car at a meter, I still go outside and play handball with Ryan. I lunge for the ball, I reach, I hit, I play hard. My 10-and-a-half year old son wants to play with me, and dammit, I’m going to play with him. I’ll deal with the pain later.

I’m not intentionally trying to abuse my body in any way. I’m just trying to live my life as fully as possible. I’m trying to be the mom, the wife, the woman I want to be while I can, because I am terrified that one day my legs won’t work at all, and I will wind up not being able to carry on like I am.

Sometimes when Paul calls me on his lunch break, he’ll ask how my legs are. Sometimes I tell him my calf is tight. Sometimes that my knees are stiff. Sometimes I tell him that they’re really heavy. But sometimes, all I can say is, “They’re still attached.” Because what else is there? I’m tired of saying it, of recounting the pain, and I worry that he’s tired of hearing it.

Before that July day in 2010, and since that day, I have never really looked at my legs with great appreciation. I always liked my soft brown hair and my big brown eyes, the same shade as my family’s front door. But my legs were just there, no different, no more special than my arms, my ears or my elbows.

Maybe it’s time to change that. To make a new deal with my legs. To start a new chapter in our relationship together. My legs are still attached; they are still very much a part of me. And I will try to look at them with the respect they deserve. Instead of focusing on how far I used to walk and how fast I used to walk, I will try to concentrate on the fact that my legs are allowing me to still walk each day.

Because that’s all I can do. Take it step by step.