I am a mutant... Living with Lymphedema.
20 years ago.... I remember waking up and thinking "what the phck did I do to myself?" I hadn't been anywhere. I wasn't out the day before doing any hard labor. In fact, I remember not doing anything at all. It was Alabama in the summer time. It was too hot to go anywhere. Too hot to even breathe outside. I didn't even want to put clothes on that day. But that morning...#GuhlPlease...that morning, I was convinced I had been out drinking the night before and fell down a flight of stairs, twisted my ankle and hit my head and couldn't remember a thing. But I was only fifteen, and I had spent the ENTIRE summer with my dad...my southern dad... IN ALABAMA. And between him and my very southern sophisticated mother, me being a pass out drunk was highly unlikely. I had spent the hole day watching the Animal Channel with my little brother and sister like the good little children we were. (HA!)
When I woke up that morning my ankle was the size of a softball, not a baseball, but a softball. My shoes didn't fit. I could barely walk, but I didn't feel pain. My foot looked like a football. But I didn't feel pain. It was just swollen and firm like molding clay. In fact when I pressed down in some spots, I could leave a fingerprint in my leg. I didn't know what to do. But I didn't feel any pain so I didn't think it was a big deal. I said nothing to anyone about it. In fact, It wasn't until a month later when my mom came to pick us up when I thought about it again.
I remember the first appointment when we made it back to L.A. I also remember the doctor being young....and confused. Took him hours to figure out what I had... but he was still confused. I was only fifteen with no history of lymph node removal, trauma to the area or reason to believe this was hereditary. Initially, no treatment was offered. Much later, by a different doctor, I was urged to take a water pill and keep it elevated. Which was kind of impossible... because I was in highshool.
Then it dawned on me... I'M IN HIGHSCHOOL!! This had all happened over 2 months time during my summer vacation. I now had to return to the world's most harshest critics with a very noticeable and very new deformity to a very much needed lower extremity. I had a long history of being teased for my height and scrawny limbs but to add an abnormality to my already lanky figure was outrageous.
Needless to say I was terrified. That year was supposed to be my year. I had fallen head over heels in love with volleyball and all I wanted to do was play. But this disease had taken a tole on my spirit. For a brief moment I was varsity captain. But my body began to kind of break down. I was always so tired and sleepy. It was getting harder to keep up. I tried so hard to hide what was wrong. And do you know how weird you can look trying not to walk with a limp?.... HORRIBLE!! My wardrobe was already questionable, but attempting to blur others perception of me quickly became the bane of my existence.
And then came the infamous sandals... After giving up on the current state of my social "footprint", I began to focus on comfort. I resorted to wearing any and everything that felt like pajamas. Sweats, baggy t-shirts... just whatever felt good. While shopping one day I came across these sandals in the mens' section of Payless. These shoes were awful!! They were the Hiker or Trek sandals that you would typically see on children. They were black with a blue Aztec print on strap, one strap across the toe and one across the ankle, both Velcro...completely hideous... for a girl anyways. Complete social suicide. Those sandals became known as the "Jesus Sandals", thereby making me the girl with the"Jesus Sandals". I no longer had a name, I had a problem.
I'm literally laughing out loud as I write this, because looking back I probably would have made fun of me too. Regardless of all the ridicule I still manage to have a somewhat normal high school life. I didn't have a lot of close friends and I wasn't popular by any standards. The friends I did have were AMAZING!! (I hope you're all reading this and know that I appreciate y'all). I went to prom both junior and senior year (and various other proms after that for 6 years straight...lol!!)... not many get to do that. And looking back on all that I was able to accomplish, I should have been much happier than I was.
Living with his disease has taught me that no matter how bad the situation you think you're being punished with... it's never really that bad and it can always get better. Taking time to reach out and put forth an effort to learn about the obstacles you're faced with can afford you a great support system. I wish I had told more people what I was going through, so that they could 1) understand why I was such a hermit crab at one point in my life, 2) realize that I wasn't being mean or disconnected... I just genuinely didn't feel good enough, and 3) help spread awareness about incurable diseases like Lymphedema.
I hope this reaches someone in need of an extra push to go out and live the life that they deserve... so they can one day look back on everything they went through and say...
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If you're reading this and have any memories you would like to share, I'd love to hear from you in the comments.