I had been in Massachusetts General Hospital for about five weeks at this point, two of which in the pediatric intensive care unit. I had a major Systemic Lupus Erythematosus flare, which included my pancreas, liver, and my muscle cells. I won't go into details about my entire hospital trip, because frankly, it's not enjoyable to listen to. It wasn't pretty, and it wasn't fun.
Throughout it all though, I stayed positive. What's a few months in the hospital? Or a few months recovering? There was tough parts, like learning how to walk again. Scars. And not being able to eat for nine days. But I stayed positive and driven with the help of my loving family and friends.
I was able to graduate high school, even after missing my entire second semester of senior year. My great relationships with staff and teachers helped me cross the finish line and get my diploma.
While in recovery from my flare, I was laying in an oncology department bed for a medication infusion. I remember a nurse telling me her best friend had lupus and suffered a terrible flare and lost all her hair! Me, with almost 2 feet of beautiful golden brown locks, shared my sympathy, but said; "yeah, that won't happen to me. I'm doing just fine."
But the worst part of it all was that I didn't see it coming. Never in my life did I imagine such a consequence.
But months passed, and so did strands of hair down my shower drain. Time went on, and more hair seemed to vanish. Tears would flood my eyes every time my mother even mentioned getting a wig.
"I'm eighteen years old mom," pardon my french, "I'm not getting a f**king wig."
Summer was starting. I wore hats. I wore headbands. I wore headbands AND hats. My sickly appearance and diminishing hair did not stop me from having a very eventful summer with loving friends.
When I was alone I would cry. I didn't talk about this to many people because I felt like I was losing who I was, I no longer looked like Dana in any sense. My hair was one of my greatest features, even since I was a toddler. My identity was fading.
Weeks and weeks passed, brushing my hair became a daily event of crying and trying to hide the wads of hair in the trash from my family, out of embarrassment. I did not feel sick, I did not want to look sick.
At the end of summer, with my very first year of college only weeks away, I realized I couldn't keep hiding what was, or wasn't, on my head. I said "Mom, I'm shaving my head."
A week later I went to a wig store. What you might not know, is wigs are rather hard to come by. We tried two stores that were absolutely terrible with rude and not understanding employees. I left feeling hopeless.
We came across a very sympathetic hairdresser who was determined to help me kick off college looking good as new, and she matched me with hair that looked exactly as my own. I put on my favorite red hat, turned around, and my friends were in absolute awe. I looked exactly how I did a year ago, before lupus took my health and my appearance. My mom was in tears.
I walked out of that salon feeling incredible and beautiful. (shown below with new hair- doo)
So, to all my new friends that I have met the past year, if you didn't already know, the hair you always compliment under my hat is actually plastic. Surprise!
If you wonder why I always have my hands on my head at a concert or frat party, it's so it doesn't come flying off while dancing. If you're wondering why I always wear a hat, it's because I love hats. And, its so you don't notice the strange hairline that appears on my forehead.
I've hidden this for so long simply because when you encounter someone with a wig, our first thought is, "What's wrong with them? Are you sick? Are you dying?" These are questions I never wanted to face. I am a happy, and now healthy, person who has to live with Systemic Lupus Erythematosus. It's part of who I am, and losing my hair was an unfortunate reality I had to face. Although I wish it never happened, it has taught me many lessons about being a compassionate person.
Firstly, be kind to everyone. You have no idea what they might be hiding, or what illnesses they can be dealing with. Often times, the worst pain is the pain you cannot see.
Secondly, keep your friends close. My close group of friends from the day of my diagnosis when I was 14 to this very second has been by my side every second. From visiting me in the hospital, offering me their organs when they thought I might need a transplant, holding my hand when crazy wig ladies started screaming at my mother. They've helped me more than I can ever describe, so thank you to my best friends that have had to learn and live the experience with me.
If I didn't have my loving team, my new family, playing club hockey with me at the University of New Hampshire, I don't know what I would have done. They heard my story (you can't play hockey with a wig, so I was forced into explaining why I had hair half the time) and they took me in without question and protected me on the ice and off the ice.
Thirdly, hiding a wig in college is very difficult. Starting in a new place was easy- nobody knew what I looked like, so having new hair didn't look any different to them. However, going to parties, any physical activities, or being close to strangers (kissing boys) were always full of fear and challenges.
Lastly, what I ask of anyone reading this to understand: It's just hair. A person can be beautiful with it, or without it.
Heres some pictures of my journey of what I call 'regrowing the fluff'
And here's some current pictures, of a happy healthy Dana, enjoying a wig-less, free- fluff life.