I remember standing on a train at the airport when someone said to me, “What’s wrong with your leg?” I remember my chest feeling like it was caving in, my shoulders rounding over, closing my eyes a little longer than usual to prevent my tears, everything within my body and mind wanting to hide, and my stumbling response in a quiet, trembling voice, “Um, well, I have this thing, it’s called lymphedema.” Lips pursed I waited for the interaction to be over. The person asked, “Can you walk on it? How long does it take to heal? My cousin broke his leg and it took him 3 months.” I never knew how to respond to the follow up questions. I wondered how insensitive people could be… So prying… This person had no idea their curiosity was cutting my heart when only my knee high compression stocking was exposed.
This happened when I was 19 years old. According to Erickson’s stage of psychosocial crisis, I was in the stage of identity versus role confusion; my essential question was “Who am I? Who can I be?” If you ask someone, who are you?, you may hear I’m a woman, I work as a physical therapist, I’m 5’9″, I’m from Kansas….
Our bodies are part of our self image and identity. They are wondrous vehicles to bring us to new places; they help us interact with our enviroment. They are also a source of judgement amongst society. Degas, an impressionist painter, began painting very thin white females which shaped the image of the 21st century ballerina. Look at current marketing ads which project an ideal body image. Exposure to media projects a certain body image which often is not reprsentative of real people.
There is a construct called the homunculus. Your brain has a map of your body (see image). If a surgeon were to touch the hand part of your brain, you would feel it in your hand. If someone were to lose their foot in a traumatic accident, they will still retain the “foot” map in their brain. Have you ever heard of phantom limb sensation or pain? This is because when the residual limb is touched, it still activates the “foot” map in the brain. According to a great book called “The Brain that Changes Itself” by Norman Doidge, a competitive violinist can practice so much, that her fingers can map together and will impair her ability to play. Also, after a traumatic or neurologic event, someone can “disown” a part of their body. This is called neuroplasticity. How does this relate to lymphedema?
How do you reconcile the “ideal” image your society has fed you with how your body actually is? I’m not sure I have the answer for that question; however I believe acceptance is an important contribution to the answer. I want to say if there ever were a process, acceptance is one.
I remember washing my legs in the shower and not wanting to look at my swollen ankle. One day, I took the bubbly loofa and watched as it slid over my swollen ankle. I said out loud, “Thank you God for this beautiful, healthy foot.” I didn’t really feel that way, but I kept touching, and watching, and praying gratitude every day I showered. As I put on my compression stocking, I would look and pray “Thank you God for my compression stocking that keeps me healthy and able to walk/move/go live my life.”
I can say more than I decade later, I can now stand up straight, smile, and with clear voice say “Oh, I have a medical condition called lymphedema.” I usually will answer the follow up questions, “Does it hurt, when is it going to get better, etc.”
I’ve struggled over the years to be identified as Breanne as opposed to the girl who has lymphedema. I want someone to ask me about my compression stocking, but I also want them to ask where I’m from, what I do, etc. My identity and body image is definetly influenced by having lymphedema, but that’s not the whole story.
Even 45 seconds can strengthen your brain maps, so take that time during the day to touch and look at your body. Whether you are using lotion for skin care, bathing, or just cozying up on the couch, use that opportunity. If someone asks you what you’re doing, just say “I’m influencing my neuroplasticity, duh.”
This has been my favorite post so far. I sometimes forget that you have lymphedema, even when I read this blog! Finding and owning identity- what a journey?!
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