Where do I begin?
I don’t share these things about my illness and recovery because who wants to hear about the hard times? Everyone likes happy endings, right? Who wants to know about the mess? Who wants to see the mess?
I read this quote, a quote that called to me that my story is bigger than me, whatever pain it causes to write this someone else may need to hear that there is hope and healing and they will be ok” there’s beauty in everything even the struggle. You can’t see it when you are in it, but trust me, when you look back you won’t even recognize yourself.
A friend of mine is battling cancer right now. She had to cut her hair because it started to fall out. When she made a post I wrote this long message to her “the perks of being a short haired girl” One of the many things I share with cancer patients is hair loss. I know she’s in it right now, I know those words won’t resonate until later in recovery, but for now they are there for her to hold and when she’s ready they may help, I hope they help.
When I was sick, I remember waking up with a pile of hair on my pillow. I have a lot of hair so when I mentioned it to people they said “no big deal, you have so much of it” and then the in the shower when I would shampoo my hair, handfuls would fall out. Still, people would say “oh you have so much hair, you can’t even tell.” I really wanted to believe them, but I knew better, every single time I had a handful of hair in my hand I panicked. I would think what is wrong with me? Someone help.
For months I was the doctors test subject going from one specialist to the next. My arm was in pain from all the blood test when the needle would go in I would feel the pop and extreme pain would shoot up my arm. The tech would apologize and say "it’s scar tissue, you’ve had too many blood draws, I hope they find something out this time, " she would say and try to comfort me with words of encouragement she would say this happened to someone before and they figured it out. She watched as I got sicker and sicker every day weaker and weaker, more blood tests. I stopped counting. The last time I was there I rolled in on a wheelchair. I wonder what it was like for her to see me slowly decline? Did I scare her? I never went back after that.
As time passed my head was in pain and I couldn’t brush my hair or even touch my head without feeling pain. Eventually it got to the point where I was stuck in bed and the hair fell out and didn’t get brushed out and it became knotted.
When you are sick, in pain and not feeling so well, you just don’t want to do anything to cause more pain. My hair ended up being a mixture of fallen out hair tangled into my hair. Showers became torture I wouldn’t dare touch my head and would lay in bed shaking for what seemed like hours trying to warm my body back up.
It got to the point where my hair needed serious attention. Luckily a family friend is a hair dresser and she sat me down trying to comb my hair out with no luck. She said “it’s bad, I’m going to have to cut it, ” I said “shave it all off, I don’t care” she refused and cut it short. I never wore my hair short, I’ve always worn it very long. It was a huge change, I didn’t care at the time. I just wanted the pain to go away.
Eventually, the doctors figured out what was going on and then it was a battle for my life. During that time it was scary, I had a diagnosis I couldn’t say, spell or understand. When I was strong enough, I focused on healing my body I had to learn to walk, talk and write my name again. I lost a huge part of my memory. It’s scary when you have to trust others to tell you your story. I have somewhat been able to piece together things from everyone’s memory. It’s a patchwork quilt of memories. My magical mother’s way of spinning a story, my sisters cynical matter of fact “facts” and Christopher’s straight shooting truth and together they make some really good memories.
I remember lying there with Christopher and he said “do you remember me” and I was so tired of course I remembered him but I couldn’t speak. “Do you remember the butterflies when we met?” Then he sang me a song that was familiar. That made me smile. Anything I could do to let him know I was still there, but too weak to respond. I would look him in his eyes, trying to telepathically tell him “I’m here, see me, please see me, I’m ok, don’t worry, it will be ok”
The moment I could actually cry tears was so magical, there were so many days I cried in pain, in sadness and no tears fell from my face, I was that sick. Now beautiful tears flow freely as I write this.
Every morning I would wake up and not see myself, I would say “who is this? I look like a boy, I feel like a boy” It was hard. “Who is this monster?” I would say to the mirror “you are a monster, my life is ruined, my business is gone, I’ve lost everything, I am nothing” this is how I talked to myself. I knew it wasn’t right to think this way, but it’s how I felt.
There is this fire inside all of us that no matter how dark life is its burning and no matter how small it is we can find it if we look. My light was sparking so bright I couldn’t ignore it. I put this picture up on my mirror in the bathroom that said “oh beauty your angel lives inside of you” I looked at it everyday while I was recovering, along with a Post-it note that said “you are not sick” and a bunch of other little notes to remind me of something good and positive to keep going. I wanted so bad to remind myself I am not my illness, right now my body needs healing. I kept reminding myself that I will get through this and I will thrive in this world.
I grabbed books and started to learn about healing I devoured them. I learned about something called the spontaneous remission project and dreamed of being magically cured. I learned I would have to pay attention to “What I eat, what I drink and what I think” those negative thoughts weren’t helping me thrive but they were real, and they were really hard. They are still really hard. To this day I struggle with the mirror. I’ll look at it tired in the morning trying to see myself, “oh, hi there you are, my monster, I know you, I remember you, I love you monster, thank you”. My monster has become a part of me. Maybe it’s me interpreting my disease visually? I don’t know.
No matter how painful it is to write this, someone else out there is suffering and needs to hear this, needs to know that beyond disease is a life of health, happiness and love, that even though you are sick now there is a tomorrow and tomorrow won’t be like yesterday or before you got sick. It will be different. You will have to hold these emotional scars, physical scars and relationship scars in your heart and give them all the love you can give them, because they make you a thriver a survivor, they make you who you are and they are beautiful. I love my disease for giving me the life I have now. I have chosen to coexist with this thing that will eventually kill me, it’s here and can leave whenever it wants, I won’t mind, but it seems to like its host, who just happens to be me.
I used to say why me? My counselor, she said one day “why not you?” And yes why not me.
So this is why I feel compelled to share a snapshot of my story because somewhere out there is a girl who lost her hair to a disease and that desperately needs to know, that someone else has gone through it too and there is a beautiful rainbow with pot of gold at the end of this storm. You got this beauty, you got this. I’m here for you, always.
The perks of being a short haired girl
Dearest beautiful warrior:
You are beautiful and short hair looks great on you.
Being a short hair girl has its perks:
You now belong to a sisterhood of short hair girls, for some reason they all smile and nod at you like you become part of this exclusive club you never knew existed.
Shampoo last forever, washing hair takes no time, and brushing hair takes no time.
Styling it is another thing, but that’s when you can get creative with the tiny hair that you have left. I made pigtails and they ended up being spikes.
If one day you just can’t seem to style those little hairs then hats and beautiful colored scarves have become your new best friend they are fun and cute! Enjoy.
People can see your face now and will comment on how beautiful you are because you are, duh 🙄.
Short hair looks wonderful on you!
The mantra that helped me:
“I am not my hair” you are so much more!
I love you always,
You have the ability to be the best version of you and it's my job to help you get there.