When I arrived in Seattle after two flights and little sleep, I hurried to baggage claim to reunite with Matt and Maddy. And then Jenn, a stranger to me but a friend to Matt, picked us up in her van and we drove into the city.
I saw the Space Needle and it was there I realized the sores in my mouth were worsening at a rapid rate. The dry air on the plane hadn't helped. I pushed food around my plate and tried to engage, but talking hurt and my mood was damaged by the pain.
For the first three nights of the trip, I laid in my bed in Jenn's sailboat in her yard and cried silently from the pain and from the rawness of emotion that pain exposes.
I was surrounded by what would become new friends and wonderful children. And yet, I couldn't connect. I couldn't be me, because I couldn't talk.
I am loud, talkative person. I have opinions. I am fun but I worried these new people thought I was stupid, or snobby, or just awfully quiet. I wanted to go home, even though I was surrounded by tremendous beauty and wonderful hospitality.
The illness had followed me on vacation. And the juxtaposition of beauty and pain made me sick and insecure.
I wanted to be myself but the ulcers in my mouth stopped me. I wanted to make people laugh. I wanted people to like me and I was so afraid that they didn't. I wanted these people to be my friends and was afraid I was missing my only opportunity.
Sometimes I am struck by how different my life is from my peers'. Everyone gets tired and everyone's back hurts but my pain is different. It is cutting and unfixable and I'm tired and my back hurts too. One of the kids remarked on how much I napped and it broke my heart a little. I want to have their energy.
But all I really wanted was to be my self. The person who I am, the person I have worked to be.
A few days into the trip, I was having a good time but struggling, knowing how much better my time could be if I wasn't in constant pain. I took some very strong drugs and suddenly, the sores faded.
And I came alive.
I noticed the change in these strangers (strangers who I now call friends) attitude towards me. They were absolutely nice before, but now I felt like I was a part of something. I felt I had blossomed and bonded, just in time to make what I hope to be lasting connections.
I have friends who marvel that I travel when this ill. But I travel because I need to get out of my head. And feeling so sick while I was away truly challenged me. It crushed me.
Luckily, I had a great time. I saw beautiful places, met beautiful people. I bonded with children who will always have a piece of my heart. I spent time with my best friend and his kid. I met Jenn and Sara and Daniel and Rebecca and Kerry and Luke and Olive and Betty and Lucy and Henry and Thor and Rylie and I felt accepted and loved.
Traveling teaches me about myself. How to persevere and take that hike, despite the pain. How to speak by listening. How to reconcile rot with beauty, pain with treasured experiences.
This trip consoled me.
This trip taught me and showed me beauty. This trip reminded me that I am living a full life, despite the pain. And no matter what, I will keep doing it.
New Huffington Post Blog
Hi. I haven't been here in awhile.
It's not that I don't have the time. Boy, do I have the time. I have the time to watch TV and babysit my niece and take long rides to the beach on the bike my legs are too short for.
I have the time. But writing or reading might remind me that I should write or read, and I don't think I'm ready for that.
But maybe I am. Yes. Here I am.
In May, I was put on a drug for nerve pain. I immediately had a bad reaction to it, and we reduced the dose. Two weeks later, I held a bottle of morphine in my hand and did the math.
It'd probably take a few of these plus a couple of Xanax to kill me. I held the bottle in my hand and thought about it, how I wanted to be dead without having to do it.
But I stopped.
I reached out and I got some help and I saw a guy, a doctor. He told me that the drug had caused a really bad reaction, making me suicidal.
I would describe myself as prone to depression. I have a million excuses: I've basically been bed-ridden for 9 months. I am living at home. I don't and can't work. Writing is fleeting when I feel like this. It's hard to get me out when I'm sick.
One thing stood out every time I thought about ending my life. My niece's face. It shone like a sun every time I collapsed into the blackness of my head, of my bed. I could never do it, I thought. I would never ruin my family and friends' lives like that.
But boy, did I want out. I wanted no more of the lupus, the pain, the depression. The loneliness and fear and boredom. I just wanted to sleep.
I don't know when I started to get a little happier. I think it was around when I booked my trip to Washington. That gave me something to look forward to.
Eventually the drugs flushed out of my system and I was no longer on the floor. But sometimes, I'll catch myself crying over nothing, though those days are less and less now.
I guess I wanted to say that there is where I've been. Under my covers, wishing the rain to stop and the sun to shine. Grasping for glimmers of summer and riding that until I am out of my bed and biking to the beach to see that sun rise.
If you feel the ways I've just described, please get help. Not everyone is going to understand but someone will, and they will save your life.
Thank you for your support. I am feeling less like a Cymablta commercial and more like a real person. I'm blessed. We all are.
I am out of bed and I am smiling and I wish the same for all of you.
Saturday I was straight trippin
Itching to get my summer clothes
Went to my parents to search for robes
Found a bunch of sundresses to my delight
Little did I know I almost didn’t survive the flight (of stairs, doesn’t rhyme)
The pile of Forever 21 dresses lay in my arms
Barefoot, no socks to slip on
I approached the top of the stairs like I was pro
Been walking since I was 1, not to brag, yo
Made it down one step and much to my surprise
I almost had an untimely demise
I tripped then stopped then started again
When I looked up I was at the very end
I started to cry, man I started to scream
My dad found me face down in the stream (of blood, doesn’t rhyme)
My nose is bruised, my forearm broke
But I refused the ER, a $500 premium ain’t no joke
Been a few days and I’m all rusty and sore
This blog’s titled nine lives so again I endure
Can’t kill the Berg, can’t get her down
Maybe this summer I’ll up and drown!
It's been almost 2 months since I traveled to Colorado and Las Vegas. But in 8 days I head to Friday Harbor off the coast of Washington.
This lupus flare has had me back at home in NJ for almost a year now. I worry that I'm regressing, watching my friends bolt forward while I remain stationary.
I don't think I'd survive if I couldn't travel and write. They're the only way to get out of my head, and my body out of my bed.
One week, one week and I'm in the air again.
This one's a little God themed, but let it be known how I don't plot these, think about them, or even have an idea about what I am going to shove together on a magnetic surface until I sit in front of my sad, 20 year old mini-fridge. So maybe it's about God. Or maybe it's not.
Who knows? It's just magnetic poetry, yo!
Text as I'd have done it:
your coffee dark
It is almost
vision of the
You are steel.
For to be
and you must
wild, broken, brilliant