Comments are closed.
Chicago and the Honeymooner Ladders
July 27th, 2015
T minus 6 days
The next day we take the Hiawatha train into Chicago from Racine. I take a Xanax to take the edge off, but my edges are so jagged that it doesn’t do anything. I’m a porcupine.
Dr. Burt asks me the same questions as yesterday, and this time I tell him everything. He says, “You don’t have an enhancing lesion.”
This means I am not in the trial. I think to myself that it’s okay. I was okay before I came. I should know better than this. Why did I think this would work?
“I gotta tell you, your cervical spine is moth-eaten. You’re headed for disaster.”
I wonder if he is intentionally trying to be cruel. Doctors are mean.
He puts his head in his hands and rubs his face. He lifts his head and says, “I’m going to treat you out of compassionate care.”
I know what this means. He’ll treat me, but I won’t be a part of the trial. This is what they do with dying cancer patients who want to try a new miracle cancer drug that hasn’t been approved by the FDA. I’m pretty sure I’m supposed to be happy, but I feel broken. I tell him thank you, and we leave. I have no idea how I get to the lobby. I suspect that Heather led me.
My flight home is delayed by four hours, and I play candy crush the whole time.
When I get home, my husband is overjoyed, but I’m having trouble feeling happy.
For some reason, I keep thinking about the honeymooner ladders. Let me explain this a little bit. I’m a rock climber — I’ve been one for over 25 years. I have a gang of friends that I go climbing with — and we take big trips and little trips, and we often go to West Virginia to climb at the New River Gorge.
Here is picture of some of the ladies in our crew. For your reference, Stephanie is the second from the right, and Krista is right behind me. This was last year at Red Rocks.
The approach to Endless Wall involves a 60-foot stretch of ladders called the Honeymooner Ladders: wooden ladders at the top of a canyon, orange cliffs all around, a river flowing and falcons flying way below you. This was the work of elves, for sure. You climb down the ladders to access the cliff faces, and at the end of the day, you climb up the ladders. Easy.
This was about two or three years ago when my leg had been getting weak when I got tired. When it gets weak, it’s like the leg starts to fall asleep. First it falls asleep a little bit (20% gone), then more (50% gone), then more (80% gone). Eventually, it’s like swinging a dead thing, and I use trekking poles to keep going. And if I rest, it recovers. I kept the fact of my leg’s weakness 5 miles away from me. I did not like it.
So, it’s the end of the day, Krista, Stephanie and I decide to hike out. We have ice-cold beers waiting for us at the cars. It’s hot and muggy, poison ivy is everywhere, and we’re a long way from the Honeymooner Ladders. When we get there, my leg is already 40% gone, but the ladders have never bothered me before. I don’t want to inconvenience my friends. I decide to rest at the top.
Krista starts up first. I wait for her to get about 20 feet ahead of me before I start. I get about halfway up when my leg goes away. Gone. Stephanie calls up to me. “Everything all right?”
“My leg is dead.”
“Oh.” She says. There really isn’t any more that she can say. I look down at her. She is looking up at me.
Panic makes my skin tingle and tears are pressing at my eyes. Going down makes no sense. I’m halfway. My vision closes in, so all I see are the ladder rungs in front of me. What am I going to do? Focus. I figure I’ll hold on really tight, and if my leg blows, I’ll be able to catch myself with my arms.
There is not enough air in the air.
I go up one rung. Reset. Breathe. I’m over-gripping. I should relax my hands or they’ll get too tired.
I go up another rung. I shake my hands out.
As long as I take this one rung at a time, I’m pretty sure I’ll make it. And I do. Eventually, I make it.
When I get to the top, I’m trying not to cry. Krista touches my arm and says, “It’s okay, you can cry if you want to.”
So, I cry. Stephanie comes up and says, “Well, that was really scary.”
She sees me crying. “Want to watch me do my arm exercises?”
She makes her arms trace small circles then big circles, and she succeeds in making me giggle. I rest. We walk out. Later that night we eat pizza and drink beer.
That fear, though. It’s the same as what I fear about MS. I reckon it’s garden variety fear. We all feel it sometimes. The true thing is this: I can’t keep MS 5 miles away from me anymore. It is closing in, and I need to pay attention.
test Filed under Stem cell transplant for MS | Tags: Chicago, Dr. Burt, HSCT, MS | Comments (16)16 Responses to “Chicago and the Honeymooner Ladders”
You’re one tough broad, Karen Staman. I have complete and utter faith that this will work.
Karen, I had no idea you’re on these journeys – physical, emotional, geographical, etc. Love and healing energies your way. Know that I’m only blocks away. If you/Chris need anything, don’t hesitate to ask.
Thanks for sharing your journey. You are an amazing, strong and beautiful person. And a very gifted writer! Thinking of you and miss seeing your smiling face each week at the climbing gym!!!
Karen, count me in with those surprised and saddened. I’m sorry to hear this is something that has been dished out to you. I hope you’re not shy to tell us what could be helpful, though I do know from experience it’s sometime hard to even know yourself. (Oh, and by the way… your writing is eloquent and insightful!)
I’ve been thinking about you. I keep meaning to invite you to lunch. I bet we’d have a lot to say to each other.
Thinking of you, Karen! Your writing is really brave, and so are you for trying a new treatment. If you keep posting, I’ll keep reading.
I love proactive, make the world and ourselves better kind of people. Like you. Just like you.
Tears keep streaming down my face every time I read your blogs.Your writing is such a gift. I know I can relate to so many of your emotions as you describe your experience. Even the feeling “of competence” on the train. Thank you for telling the Truth. I am not sure how many of us have experienced that BIG fear. Although, maybe many have on their own journeys. I have in my own way, and I get it. You are not alone in any way. And by sharing your story, none of us are alone. I love you. I know you can do this, all the way to the top and to great health and healing. Laura
I am so glad that we are in this together. You aren’t alone either.
Keep being you. And writing. And being you. And writing.
I wish I had some kind of epic yogic advice to shine through the letters and words. But you’ve heard them all.
You are brave. You are a badass. And you are making a difference in this world. What is more important than that?
I’m here, cheering you on.
xoxo
Jen
You did give me yogic advice that I keep with me; I will write about it in a future blog — ideas are simmering — but the advice was, “It doesn’t matter where you are. Just find your edge, and work there.”
Hanging with you on this journey Karen. Your blog posts are fantastic.
No wonder Maddie is so tough and strong. You are amazing, I am so glad to be on the soccer sidelines with you these many weekends, and look forward to many more. Good good luck, all thoughts and prayers with you and your doctors and medical team. Please let me know if there is anything we can do back here in NC!
Mary Maclean
Mind over matter. One rung at a time.
Oh, and remind me never to arm wrestle you.
We are with you Karen – cheering you on – every rung of the way!
Powerful writing.
Life is so fucking unfair sometimes.