In a tube. Eyes closed. Ear plugs in. Holding the panic button. Loud noises. Sometimes a buzzing. Sometimes a thumping. Sometimes a semi’s horn. When will it end? What does it see? Cold. Remember to breathe.
It all started on a Tuesday. Teaching. Pain behind eye. Strange headache. Ibuprofen didn’t help. Still there the next day. And the next day. Sudafed didn’t help. Still there the next day and the next day. No health insurance. Visit Med 7. Unhelpful doctor. No exam. Could be a tumor or an aneurism, he says. Need MRI right away. No health insurance.
Day 6. Still there. Feels like eye muscle strained. Hurts with eye movement. At night with eye closed a white flash behind eye lid.
Day 7. Still there. Darker in that eye. Close right eye. Things look dirty. Dim. Yellow looks murky. Red looks brown. Jeremy calls optometrist; asks for emergency visit first thing the next day.
Day 8. Visit optometrist. Says it’s optic neuritis. Could be indication of MS. Optic neuritis usually heals itself within 10-13 days, he says. Get MRI right away, he says. It could be MS, he says.
MS? What’s MS? What does that mean? Shots? No more walking? Pain? Call Jeremy. Crying. Hysterics. No health insurance. What to do. MRI. MS. No health insurance. What to do.
Day 17. Optic neuritis finally gone.
It’s February 2011. My faith community disbanded on December 19. Jeremy proposed on Christmas Eve. Told parents on December 30. My brother wants to know about church. What about getting fed spiritually, he says.
What about the health of your sister?
March 10. First doctor appointment & MRI. April 4 visit neurologist. High risk case of developing MS, he says. Patients who have optic neuritis plus an abnormal MRI have an 80% chance of developing MS. Another MRI in three months, he says.
No diagnosis with only one occurrence. MS by definition means there are multiple occurrences of symptoms.
Lesions on the brain. MRI shows lesions on the brain. MRI monitors lesions. Will they get bigger? Will there be more of them? Will they stay the same. Staying the same is a good sign that MS isn’t developing.
June 13. Second MRI. Neurologist emails. No new lesions, he says. Good news, he says. Another MRI in a year, he says.
Now it’s 2012. June 18. MRI number three. Routine. Just monitoring the lesions. Nothing to worry about, Jeremy says.
In the tube again. I hate the tube. It’s cold. My feet get cold. They make me take my sweatshirt off because of the zipper. But I get cold, I say. You can have a blanket, they say. Are you claustrophobic, they say. Yes. Did you take anything? Yes. What was it? Ativan. Ear plugs. Cushion around head. Panic button. Remember to not move, they say.
I know. It’s my third MRI.
Email from neurologist the next day. Similar results on the MRI, he says. But there are still concerns that I will develop MS, he says. He wants to see me, he says. Call Jeremy. In a panic. Why does he want to see me? He just emailed when everything was OK after the last MRI. It’s probably nothing, Jeremy says. Everything will be OK, he says.
June 22. Second hospital trip in one week. See neurologist. New lesions, he says. He shows us MRI from last year next to MRI from four days ago. He points to bright spots on the new MRI that aren’t there on the old MRI. Relapsing-remitting MS, he says. Drug treatment, he says. He gives us literature on two drugs and he wants me to choose between them. One is a weekly injection. The other is a daily injection. One warns that side effects may include heart failure, depression, suicide.
He leaves the room to get the drug information. I start to cry.
We leave in a daze. We don’t talk. I cry. We stand next to the car in the parking lot. We hug. I cry. I don’t want to be on drugs for the rest of my life, I say. I know, he says. Right now there is nothing more to say. Right now there is nothing more to do. Right now all we can do is drive home and stop at Target on the way. We pick up things like cat litter and laundry detergent. Jeremy buys me a new pair of sandals.
Hmm. Lots of life changing moment just before or after trips to Target. The basis for a new ad campaign? Thank you for sharing, J.
Thanks for so bravely and poignantly sharing all you’ve been going through.
Oh Janna. I’m so sorry this is happening. Your post really catches the surreality of it. Start reading everything positive you can find. I have a video link to send you.
See you on Monday?
Yes, Ann, I’ll be there Monday!
That’s rough, Janna. Sorry to hear about it. New shoes help a little bit, aye? I hope you get better news next time.
I love you, Janna. Thanks for bravely sharing this story.
Janna, you are a beautiful woman of such strength. I look forward to watching how your writing continues to record, honor and transform this process in your life. Let’s get together to do some serious writing work soon…xo
I appreciate you sharing this story so much. I don’t have MS but something has been going in in my body for over 5 years that they still can’t pinpoint. MRIs of the brain are the worst.. Meds that cause worse side effects than the actual problem. I hate it. It’s so difficult not to make it the all consuming part of your life. But You are an inspiration. Thank you.
Thank you, Crisie! It can be a long and scary and tiring journey when strange uncertain things are happening to our body. I hope that you get some answers soon.