Breath & Shadow
A Journal of Disability Culture and Literature
Someone said, “Is her mouth drooping?”
In response, I tried to lift my left arm and couldn’t. “Oh, God, I’ve had a stroke,” I thought. I’d been warned of such a possibility.
“No, her mouth is okay. She’s fine.” That was Jones’ voice. For the first of a million times to come, someone asked me to wiggle my fingers and toes. The left toes barely twitched. I fell back to sleep in the ICU for 32 hours, my sister sat by my side.
I awoke slowly drifting in and out. I thought about my lesions and wondered what shapes would appear if I connected the dots. Would I find the big dipper and Orion? The film already resembled the Big Bang theory. I wondered what to do with my old MRI film. Perhaps make some shower curtains. For sure, I wanted a few special shots cut for my wallet and a few framed for my bookshelves. I might need all the MRI film if I wove the shower curtains. How about some sun catchers? Or baskets? Could I get other MRI film? Could I sell the products on eBay, as there was no bottom to the bad taste reflected by the items sold there daily? Bones of Saints, Elvis’s toothbrush, water from the Garden of Eden, dirt from Atlantis, planks from the house of the Bind Torture Kill murderer, Lee Harvey Oswald’s book depository window. Why not brain MRIs made into magazine racks? Martha Stewart would be so proud.
Doctors’ rounds start early at Mayo. Every day young doctor Phillips, with his creamy complexion, came to see me. He spent most of his five minutes in my room looking at his shoes. That told me he was a Minnesota boy. He would never proposition a woman in an elevator.
Jones appeared with Dr. Phillips one morning. The senior doctor
stepped into the fog of my sleep and began talking.
“Ms. Bechtler, the tissue we got is being analyzed. It’s amyloid.”
found my voice. “What’s Amyloid?”
shook my head to try to clear it. Why couldn’t doctors,
the most important ones, come at reasonable hours when I was coherent
enough to formulate intelligent questions? Amyloid must be like
sludge because my head felt stuffed with mud. I handed Dr. Jones a
piece of paper and a pen.
I looked at his typical doctor scribbling and wondered if doctors take classes in illegible handwriting. “Neuro alpha amyloid.” I reached for my computer so I could look up the meaning of this phrase, which sounded like Greek roofing material. Then I remembered, I had woken in the night and opened the computer. I wanted to send an email telling people I had not died. The darn machine lay on my knees as I typed. It began sliding to my left. I clamped my knees but it continued its descent toward the floor. I tried to catch it, but my hand hung useless at my side as the $2,000 machine inched away. The slow motion effect was due to being half asleep or maybe the drugs, but I watched the pristine white I-Book hang in space for a few moments, then hit the tile floor popping and cracking. The screen shattered, then snapped at the hinge.
I was too groggy to scream or be appropriately shocked. I had put the pieces in the computer bag and fallen back asleep. Mary had handed me a few alpha keys that popped right off. I stuffed them under my pillow.
She said, “I couldn’t catch it. It all happened so fast.”
As if reading my mind, referring to my newly weaker left side, Dr. Jones said, “If the surgery hurt you, it’s from your brain swelling. Two, three weeks, you should be as you were. If it lasts five weeks, it could be permanent, but I wouldn’t worry yet. Swelling is common and goes down in time. We have you on steroids, which will help.”
I forced a waning smile. Easy for him to say as he moved gracefully in his fully functioning body. “Can’t think,” I muttered.
“Woman, give yourself a break, you just woke from anesthesia and a four hour brain surgery. You’ll feel better tomorrow. We’ll talk then.”
I came out of the surgery with a much-diminished left side. I dragged my left foot, I couldn’t grip with my left hand or it spasmodically gripped on its own and wouldn’t let go. I was in a low level of constant pain and I couldn’t raise my left arm higher than my shoulder. Mary was very concerned. I was very concerned.
“And,” Jones used a fatherly tone, “Diane, do not get on the computer looking up things that will only scare you. Wait for Carini or Yurekli to explain. You’ll confuse yourself. The Internet is filled with misinformation.” With that, he left, Dr. Phillips trailing behind him.
I met the parasite woman after I was transferred from Intensive Care to Acute Care. We shared a room. My sister and a nurse helped me limp to the bed. Beside me, the woman threw up violently in a pail. The nurse went to help her while Mary settled me in.
Within a few days, Maxine and I were breaking unspoken Mayo code and talking about our illnesses. Barfing, crapping, and showering in close quarters will create quick bonds. Jigsaw cut pieces of conversation had drifted over the curtains to my sister and me, and we tried to figure out Maxine ’s problem. She had a lawn-mowered swath of visible skull up the back of her head. Her fresh red incision was about six inches long. The skin was held together with a row of shiny new staples. I wanted to grab a staple remover and go to work. Mary was not in the room, when Maxine told me her story.
“I have parasites in my brain.” She said it as though she were speaking of bad weather. “They lay eggs, which hatch and cause cysts that block the blood flow in my brain. Lesions form and become infected. The doctors had to drain the abscesses for the second time this year. May have to do it again. May have to put in a shunt. They can’t remove the parasites. They can’t be killed with medication and they can’t be dug out. They told me the name of the condition, but I can’t pronounce it.”
I had a “Twilight Zone” moment not believing what I heard. Was I in America or had I been teleported to an undeveloped part of remote India? God almighty, there were problems as bad as mine, right here beside me.
She went on, “This was my third operation and I don’t know if I can stand another one. The nausea and head pain from surgery is terrible, almost as bad as the headaches from the burrowing.”
Bugs. God almighty! The woman six feet from me had creatures feasting on her brain.
She continued, “I collapsed at work with pain the first time. They did an MRI at my hometown hospital in Akron. Said they’d never seen anything like it. Sent me here. Lots of strangely shaped lesions. Docs think I got infected traveling. I’ve only been to Canada, but I petted moose and deer and drank water from streams. It was a wilderness adventure.”
I told her, “My doctors asked me about travel also. The Caribbean, Mexico, and Turkey were my exotic ports.”
Gerhardt and I went on cruises. No medical problems were due to any of my travel. What it wasn’t: Parasites or an IUD migrated to my head or objects being placed in my brain.
Rumors started in Winston-Salem, where my family members were getting spotty information and embellishing. My sister-in-law’s mother told people I was having a metal plate put in my head. Other people remarked to my mom how kind it was that her minister went all the way to Minnesota to see me. I’ve never met my mother’s minister. He went to Mayo for treatment for a stomach growth. My sister-in-law’s mother watched too much TV.
Mary was back. When I woke again, dinner arrived. I had beef stew. Yea.
The food at Mayo was tasty. I was hungry and making up for the lost meals. I was quite thankful my roommate was no longer vomiting. A full can of cold Sierra Mist fizzed on my tray. I loved the citrus flavor of this newly discovered soft drink. I ate my crunchy salad then gobbled the steaming stew. I continued membership in the Mayo clean plate club.
“Did Kevin call while I slept?” My sister shook her head. I turned to the side and squeezed my eyes. I’d had brain surgery and my son had not even called to check on me.
Mary was quick. “Mama called. Daddy, Lucas, and Gerhardt called. Lawrence called, too. I told them you were fine and you’d get back to them eventually. Now lift that left arm.”
“My goodness, that is not good. You seem much worse with walking and with your arm use than before the surgery.”
“If I am, then that’s how it is. I signed so many releases for this surgery that if I had died on the table with a scalpel in my heart, Mayo could have claimed I committed suicide while under anesthesia.”
Finished with dinner, I fiddled with the broken laptop pieces. I didn’t have tape or tools, but I had determination. I stabilized the keyboard on the mattress. I propped the shattered screen on a pillow. After attaching the plug to both the outlet and the machine, I pressed the “on” button. The familiar Apple ding rang out. I clicked my browser icon and logged in to the Clinic wireless network. By shifting the pillow, I had enough clear screen to read. I could write. I could pick up and send email. I could shop on the Internet. And that’s exactly what I did. I shopped for a new laptop. I sent an email to Scott asking him to watch for the arrival of the new computer and to take it inside the condo. I didn’t want it sitting by my door inviting thieves. I also asked him to overnight my older laptop to me.
Before I put the computer pieces back in its bag, I worked on my graduate school writing submission.
Mary and I played a game while I was in recovery. We called it “Name that Scar.” It began with the parasite woman. We were always very quiet when we played.
While waiting with Mary for her bus, back to the Kahler, a woman rolled by in her wheelchair. She had about a quarter of an inch of hair. Her fresh incision began at the base of her skull in the back of her head and slithered its way over her head to her forehead. She still had stitches. “Amazon River,” my sister said.
“Flight of the Bumblebee,” I returned.
Mary could stay only a few days. It was becoming clear to me that I’d never get my things and myself home without help. Scott not only agreed to rescue me, he said he’d gladly pay for his own ticket, a thing Lawrence would never have done. Scott wanted to know as far ahead as possible in order to book the flight at the best rate. I told him I’d let him know the minute I knew. In the beginning, Yurekli had said I’d be at Mayo about a week after surgery.
The whoosh whoosh of compression stockings blowing up air then releasing it lulled me to sleep. The stockings were to prevent blood clots from forming in the legs. Brain surgery patients had to wear them at least 10 days. I wore them, as did Maxine. The synchronized pulsing soothed me.
The next day, I made my final submission for the third semester of my MFA program. I handwrote part of it, transcribed it on a keyboard that jammed and had missing keys, read the piece for errors on the shattered screen, and sent the work from a the broken computer while it was propped on a hospital bed in the Mayo Clinic recovery wing less than one week after I’d had brain surgery. God help a future grad student who pleads for a deadline extension based on a dog eating homework.
I downloaded others’ submissions to my flash drive and had them printed at the Kahler Grand Business Center. Mary brought printed copies to me as well as copies downloaded onto the flash drive. I copied everything to more than one place for fear that the broken computer might stop transmitting at any moment. I preferred people receive two copies rather than none.
The head of studies always told us to write what we feel passionate about. My ordeal was the most important thing in my life. So, even though I was a fiction major, I wrote my truthful “stranger-than-fiction” story as a personal essay and submitted it. I received favorable comments on my piece.
A nurse wheeled me to and from the Mayo media center’s reliable computers, where I picked up and sent email. I sent a specific email to my MFA group asking them to confirm receiving my information. I copied the head of the program on my work as well. I wanted him to know I was still in school, that I had not yet started my leave of absence. I copied myself to make sure everything transmitted. It did. Later, I picked up confirmations from the Mayo computers lab then deleted it all before I logged out. Unlike Lawrence, I’m computer smart. I knew to clean my material off computers before I shut them down.
reread comments about my writing. They were healing words for me. To
read and to write. I was encouraged to write more about Mayo. But I
resisted extending my Mayo stay. I wanted to go home. The doctors
sent a social worker to assess and reason with me.