Milroy was here: The story of how my cankles drove me to otherwise become an overachiever

Raychelle Muhammad
Mar 15, 2018 · 8 min read
Photo by Nirzar Pangarkar on Unsplash

Out of nowhere, when I was 10 years old, my left foot ballooned. It wasn’t the result of an allergy attack or a sports injury and I didn’t have a known chronic ailment as a precursor. For reasons unknown, I had developed this swollen foot and calf and nobody could tell me why.

This would be the beginning of a journey into endless prodding, needle pricks, and blood tests which yielded very little in the way of a reason why it happened. What I did know was that on top of being the tallest and thinnest Black girl in my class, I was now also the weirdest.

Being deformed all of a sudden immediately began to shape my self-worth. There was something wrong with me and maybe I wouldn’t be accepted for who I was when people found out. Dressing the way normal people do in shorts, dresses, sandals, and flats put my feet on front street. I had to find a way to compensate for my flaw.

I was well into my adult years before I could give my condition a name. Doctors scratched their heads trying to figure out how I could be on the planet for over 10 years before it manifested itself. They called it lymphedema, which is just swelling due to a blockage in my lymphatic system.

Trying to explain my diagnosis to the average person, especially fifth and sixth-graders, only caused me more angst and frustration. Now I know that what I have is called Milroy’s disease. It is a congenital defect and if anyone wants to know more, I can just tell them to Google it.

Theodore Roosevelt Elementary — Sixth Grade

Other than being a visual distraction, Milroy’s didn’t stop me from doing what pre-teens do. It didn’t cause me to limp or limit me from any physical activities. But Milroy’s did teach me how to hide.

I was already shy, so having a big foot drove me to become a master at diverting attention away from how I looked. I became an overachiever, leading with my brain and ability rather than my appearance.

Being the third of six children who were all honor students, I naturally had the desire to distinguish myself as an individual. But having some bizarre disease wasn’t exactly what I had in mind. I didn’t want to be the problem child whose health condition meant using the family’s limited financial resources on doctor’s visits and medical tests.

Photo by Paul Volkmer on Unsplash

So I made fast work of my studies finding a permanent place on the honor roll. I stayed out of trouble for the most part and excelled in extracurricular activities through the eighth grade.

By the time I got to high school, I had discovered sports. Playing basketball and volleyball gave me confidence. It didn’t hurt that high-top sneakers and knee-high tube socks camouflaged my sometimes seemingly clubbed-foot.

Up until the ninth grade, my Milroy’s was more of a cosmetic issue than anything else. But the summer before the tenth grade, everything changed. My first bout with a flare-up called cellulitis landed me in the hospital for 11 days. I suffered fever that reached 104.8 degrees. The ice bath, they said, was necessary.

My left leg tripled in size, was flaming red, and was burning hot to the touch. I had never felt such pain and nausea and delirium. The skin peeled like a bad sunburn for months after the worst was over.

All me.

Somewhere along the way, my right foot and leg decided to join the party. By the end of that summer, I had a similar flare on the other side of my body. Luckily, we were able to treat it at home. But my sophomore year in high school kicked off with me hopping around on crutches against the backdrop of my parents getting divorced.

We had already spent the last year living in a house that was without power and water for a short time in the winter. My dad had gone AWOL and stopped paying all the utilities. He visited me all of one time during my stay in the hospital signaling that things would get worse before they would get better. My Milroy’s was an inconvenient distraction and I had to figure this thing out.

What I learned about Milroy’s was that my compromised immune system left me vulnerable to illness. At any given time, anything that I was working towards in life could be interrupted without warning. Thoughts swirled in my head as I wondered how I would navigate life with this inevitable series of speed bumps ahead.

How would I level the playing field? How would I compete? Milroy made it clear that he was here and he wasn’t going anywhere.

My answer was that I had to be great. If I kept high grades, then being sick or lethargic wouldn’t hurt my GPA much. Milroy’s forced me to work ahead, be exceptionally efficient, do things right the first time, do things well, and to always have a plan B and C.

Teachers, employers, and coaches had to know that this ailment wouldn’t slow me down. If I had my way, they would never know I was living with any disease at all. Most didn’t.

That strategy worked for a while, too. I graduated in the top one percent of my high school class. I was an all-district varsity athlete — even made the academic all-American volleyball team.

As far as my college situation was concerned, I was batting a thousand. I received academic scholarships from Stanford, USC, Duke, Northwestern, and Georgetown. Milroy’s became my fluid-filled motivation to succeed. I had won.

Graduate of Jesse H. Jones High School Vanguard Program

In my mid-twenties, however, Milroy reared his ugly head yet again. I found out that the mountains of stress I was under at work were not compatible with my condition. Being a pleaser and putting in the extra hours to make myself invaluable landed me back in the doctor’s office.

For years I took anti-inflammatory drugs, steroids, and antibiotics to manage the rampant flare-ups of cellulitis. The needles and the prodding and the blood tests were joined by trips to the rheumatologist and x-rays called venograms.

Bedside manner be damned, my doctors affirmed my unusual diagnosis every chance they got. “You’re just weird,” Dr. B. told me. She even went so far as to tell me to “stop being such a baby” and “just get back to work.” Needless to say, I found another doctor, but the best she could do was prescribe me a steroid in hopes that it would speed my healing.

And all that work I had put in making myself so irreplaceable as a manager of an off-price retailer didn’t buy me any sympathy from my bosses. They actually resented my absence.

I remember my district manager hurling subtle threats at me if I didn’t “figure out what was going on” and get back on the job. After all, I was making things more difficult for everybody who had to pitch-in during my medical leave.

I knew that my lifestyle would have to change if I wanted to get healthy and stay that way. But I let having Milroy’s convince me that if I stopped being everything to everybody, then they would throw me away. In a way, I was right.

But after one flare-up that took me months to recover from, I had an epiphany: Instead of making my Milroy’s work for everybody else, I would have to find a way to make my lifestyle a better fit for me. That took time.

Vegetarian pizza

Several years passed before I really started to slow down but when I discovered fasting and made a move towards a more plant-based diet, the flare-ups all but disappeared. I had to start putting myself first.

Milroy wasn’t an invited guest in my house, but I was empowered to keep him in his place. I had come to accept that there would likely always be varying degrees of fluid in my lower extremities, but I don’t have to be a slave to it.

What I didn’t consider was how others perceived my struggles with Milroy’s over the years. After all, it was just a part of me. I had adjusted my life in a way that removed the uncertainty that it brought along for the ride. I wouldn’t let Milroy’s be a problem for anyone else but me.

Unless I mention it now, my siblings probably don’t think twice about it. That extended hospital stay in the summer of 1983 is remembered largely as a one-time incident.

Twenty years later in 2003, my siblings and I stood in a hospital room with my mother after the doctor delivered her diagnosis of stage 4 terminal lung cancer. She said in front of everybody that I was her hero because I had lived my life with a “debilitating disease.” Mom vowed to fight for her life as I had. But not once did I ever think of Milroy’s as “debilitating.”

Was it uncomfortable at times? Yes. Was it a huge inconvenience? Yep. Did it make me dread shopping for shoes? No question. But debilitating? Not as far as I could tell. Psychologically, it was debilitating in many ways. I just hadn’t realized it.

My maternal side of the family

Learning how to cope with Milroy’s helped me nurse my mom right out of this life. I had amassed skills that made it possible to tackle motherhood, homeschooling my now-18-year-old daughter, help her get into some pretty great colleges, hold down as many as four jobs at a time after my divorce and job loss (which happened within two months of one another), run several businesses, and even help a few people along the way.

As long as I don’t sit around brooding about what life might have been like if Milroy hadn’t showed up, I’m good. I don’t apologize for him anymore, either. Milroy is just part of the package so folks will just have to take us or leave us. And you best believe that if I do decide to take a seat, I’m propping these feet right up on a desk. That’s what works for Milroy and me.

Thanks for reading! Follow me on Twitter if it suits your fancy! :)

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