I
The harsh sterile lights of the hospital are so bright after our mad dash through the summer night.
The nurse comes out and takes us to a room and says that the Doctor will be in shortly.
I didn’t know then that that is a very bad sign.
“Your grandmother has died of a heart attack,” the doctor says.
II
We wait in the waiting room. The surgeon comes out. There is no request for a private room.
“Your mother’s surgery went well. We think we got it all,” he says.
III
I take my mother to the Doctor. She needs some antibiotics for a sore throat.
The nurse comes out and asks me to call my father to come over.
The Doctor wants to talk to him.
I call him, he races over. I go home.
He calls later. The cancer has come back.
IV
The tech is talking during the ultrasound, all chatty and friendly. Then she stops chatting, excuses herself, and another doctor comes in. They start using Latin terms. There are no more smiles. Then they say, “the results will be sent to your Doctor.”
V
The tech is finished with the MRI. I ask for the CD. He comments that I have some interesting results. “Your Doctor will explain.” he says.
VI
I see my fourth Doctor. She takes me back to her office and starts showing me the MRI results and the bright white lesions next on the Halloween picture of my spine and brain. They are not even remotely “interesting.” They are terrifying.
VII
I get an iPod for Christmas so I can listen to music while I lie absolutely still while the medicine that both helps me and kills me slowly runs down the tube into my arm. Don’t move your arm, they say. Sign this release saying we told you about the chance of lethal brain infection, they say.
VIII
The chance of seizures is small. The main side effects are stomach pain, nausea, dizziness, internal bleeding, and strange dreams. I look forward to the dreams. I wonder if people have the dreams because they have been told about the likelihood of strange dreams.
IX
My cane has a leaping jaguar handle. The TSA agents are intrigued,
X
Disabled people get special treatment at airports. We also get spoken to as if we are small children. A reasonable exchange?
XI
A neighbor explains to me that everything is caused by my diet. I have to change everything. “You must eat more kale, “ he says. “Kale saves lives.”
I think about putting that on a tee shirt.
XII
My husband cooks my every meal. He does all the housework. He does everything to make my life easier. It’s like being a very spoiled child, but never having to do chores again.
I miss doing chores.
XIII
There is no cure, but we’re getting closer. It’s like being on a long car trip, asking if we’re there yet.
Right now, having multiple sclerosis is like an endless road trip, but with no stops for Cinnabons.
Tags: bad news, cinnabon, disability, doctors, kathleen cooper, multiple sclerosis
Difficult, brave, and beautiful, Kathleen. Thank you.
Oh, wow. Wow.
Love for you and your family. <3
There are so many of those people in the world! And if you don't sound receptive to whatever idiotic idea they have, then obviously you just want to remain ill.
I held my breath nearly the whole way through. Powerful piece.
And I’m crying. MS sucks. Take your awesome jaguar handle and beat the crap out of your neighbor, then tell him that kale will heal his broken nose.
Couldn’t read earlier, as I woke to the news that a neighbor had died and was very shaken, but this is beautiful. Fuck kale gently with a chainsaw; telling your truth saves lives.
Couldn't read earlier, as I woke to the news that a neighbor had died and was very shaken, but this is beautiful. Fuck kale gently with a chainsaw; telling your truth saves lives.
This is so powerful. Thank you. Also, that cane is stylin’.
This is so powerful. Thank you. Also, that cane is stylin'.
It’s you, me, and President Bartlet out here, man.
Me too. This got me in the gut.
Thank you for sharing. As a retired nurse, I have seen and heard much of what you are writing about. I want to honor your in your fight with MS.
This was really wonderful, thank you for sharing.
My sister was diagnosed with MS at 27, three years ago. I am perpetually terrified for her. She had a relapse a few months ago where she suddenly couldn’t walk and she lives 700 miles away and I had $12 in my bank account, there was no way I could get to her without robbing a dude, and though my helplessness was profound I could not even begin to imagine how she felt – at least I could have walked to her. In short, I am a terrible sister.