Step One: Just Add Electrodes

My thoughts on recent brain surgery

TW: Graphic pic of the holes in my head. If you’re squeamish, be warned. There will be another warning before the pic.

Upon returning home after having electrodes placed in my brain, I had to do something about the fact that I could not wear a pair of glasses as the right side of my head hurt significantly more than the left. There is a bump behind my right ear where the surgeon rolled up the wires that will attach to the battery to the electrodes. This bump and the surrounding area feel like someone hit me with a baseball bat, so I took a pair of readers and snapped the right arm off.

I once believed that being curious was the most important life skill to possess. Now I’m thinking being adaptable is equally crucial.

Remaining curious equates to always learning new skills. But remaining loose and resilient in the face of adversity seems to be key to learning how to cope. Tools for coping can lead to hoping. I mean, it’s only a letter away, right? It can’t be just so happy songs can rhyme.

I must have had one hundred plans about how to deal with my life with Parkinson’s disease before I considered DBS (Deep Brain Stimulation) and a thousand more after I decided to begin the testing to see if I was a candidate. Playing “Wait and See” with the medical community is not as fun as the brochure makes it out to be. But I finally arrived at the precipice of step one a week ago today.

On the Sunday before Monday’s surgery, I felt calm. I had brunch outside with some friends and in the late afternoon our back patio was filled with smiling faces eating Outshined bars (fruit juice popsicles, I’m obsessed) and it occurred to me that I had done all the work there was to do. I took the time to look at all of the wonderful people who cared about me and wished me well and it sunk in that I have focused on having meaningful relationships with kind people and I could simply stand in that light for a bit. This was a race I had trained for, there was nothing left to chance.

Sunday night I slept like a baby and woke up before the alarm. I had not had any PD meds since 10 pm the night before but my body was not as stiff as it had been in the past without medication. My roomie drew me a bath with some baking soda and surrounded the tub with flowers and candles. As I sat soaking, I enjoyed being present to how I felt, how the heat of the water and the smells of the flowers were so perfect and I thought about every other time I’ve taken a bath where I allowed my mind to ruminate about the twenty-five other things that had to be accomplished and what order I should do them in case I ran out of gas. On this particular Monday morning, I enjoyed the bath like it was the only thing that mattered. I had to let go of worrying about everything. I had to stop and let the light in.

While I was in the tub, Northwestern Medical Facilities left me a message telling me to be at the hospital no later than 10:30 am. The medical coordinator initially told us on the previous Friday to be there by 11:25 am. I had stopped eating at the right time but I was still drinking water. “STOP WITH THE WATER!” the nurse yelled at me on the phone but I was oddly unflappable. As my caregiver crew was all packed and ready by 9 am I told them we could make the earlier time slot.

wearing sunglasses indoors - the universal sign of being unbothered

“We’re adaptable,” I tell the voice on the phone. “We’ll be there.”

We pull up to Northwestern at 10:20 am. There are bracelets and ID checks and we end up in a tiny room where I change into my hospital gown. Dr. Hsieh (pronounced SHAY as in “sashay you stay” in case you need to say it correctly in your head) comes in and discusses all the positive negative outcomes; death, infection, stroke, loss of speech and memory and the chance that the procedure “will not be as helpful as expected.”

I sign all of the forms saying I understand all of that. My roomies are swept out as it’s show time. There are now nine members of the surgical team, two anesthesiologists, and a few nurses in a space designed for two or three people, tops. One of the neurosurgeons keeps stepping on my IV as there are only so many spots for feet to be and the room takes on an air of chaos. Dr Hsieh asks him to “please ensure that doesn’t happen again.” A tall dark haired member of the team asks me how I feel and I reply, “I feel ready.”

“Ready,” he repeats. “Good. We like ready.”

Dr. Hseih needs me in a chair so he can affix the stereotactic frame to my head. This is the part I have dreaded. I am as wobbly as a newborn fawn as many hands to try maneuver me from a gurney to a chair.

“This will be the worst part of it all,” Dr. Hsiesh says as he injects numbing agent into both sides of my forehead and two points on the back of my head. The brain may not have pain receptors but the needle hitting my skull is a horrible sensation.

“Just like going to the dentist,” he says. A moment later I can no longer feel his touch in any area that has been deadened. There are Sharpie makers designating spots where the frame will be screwed into my skull. The frame is heavy. Dr. Hseish is content with the placement as I feel him tightening the screws in the manner of a sailor battening down the hatches of my head. “Everything involved with this frame is loud and clangy, unfortunately. But you’re doing great.” The anesthesia sirens sing their song and there are only disembodied voices in this portion of the memory film strip in my brain.

BRAIN JAIL

I know that I will need to have a CT scan to check the placement matched against the MRI of my brain taken six weeks ago, and a CT scan after the electrodes are placed to verify they are correct as well. I also know that neither scan has been ordered. I hear them preparing to take me to radiology and there is lot of heated discussion. I hear the surgical team say that they called for the CT scan fifteen minutes out. “We didn’t have you on the calendar,” I hear a young woman’s voice saying. “It’s going to be twenty-five minutes at least.”

This bulletin is devastating as the frame feels so heavy. I am not able to lay back comfortably so I am halfway sitting up, holding myself in place with my neck and my abs. Neither area gets much of a workout on the regular so I quickly feel the burn of “How long can I hold this position?” Certainly not for half an hour, to be sure.

Dr. Hsiesh’s voice cuts through the noise. “I cannot make her wait that long with that frame on her head,” he tells them. “We will need to figure something else out.”

A second scanner is opened up and everyone involved whisks me in to run my caged head through the machine. “How do you feel?”

I tell them it hurts to hold the frame, it feels so heavy. They tell me it will get better in the operating room as I will not be fighting gravity.

Then the film strip seems to go to stock footage. I feel like there are so many people in scrubs running alongside my gurney, smashing the buttons that make the doors open to take me somewhere new.

Fortunately I do not remember the saw making burr holes in my head. The tall man with dark hair from earlier is close to my face, saying “Eileen, do you feel something?”

“What would I be feeling?”

“Oh, you’ll know”

I know the electrode is in and he is checking to see how much is too much stimulation. He moves my legs and arms in circles to test their stiffness. I feel an energetic jolt through my left eye.

“I feel something,” I tell the man with the questions. I hear the static of my brain “chattering”, a microphone strategically placed to hear the energetic fields buzzing along. He tests to see whether my speech is affected. “Repeat after me, “Today is a sunny day.””

“Today is a sunny day”, I hear myself say.

They switch to the other side and there is more poking and prodding and brain chatter and I get a strong painful sensation in my right hip which has been plaguing me off and on.

“I feel pain in my hip”

“Anywhere else? How about now?”

The pain is completely gone. Like a light switch on and off. I did not know pain could disappear on a dime.

We reach the limits on the right side and they ask how I am doing and I yell as loud as I can, “I AM FREEZING AND MY MOUTH IS SO DRY” My mouth is so dry I can no longer keep it open, the air coming through it makes it feel like the skin might split at the seams.

A voice says, “You heard the lady! Get her some blankets!” I am covered in warm blankets and the film strip of my memory is once again interrupted.

In the recovery room, a woman with the softest voice to match her hands tells me it’s time to take some pills. When she gives me the water through a bendy straw, she smiles and says, “Isn’t that the best thing you’ve ever had in all of your life?”

She wasn’t wrong. In that moment, I could envision nothing better.

I then had to wait a long time for the second CT scan (thankfully without the head cage) and my roomies had gotten word hours ago that the procedure had gone well. They had met up with some friends from our neighborhood who joined them in Millennium Park for the day. The four of them kept busy, making sure flowers did not go unappreciated and the dogs of downtown did not go without proper rubs.

Visitors were only allowed from 8 am - 8 pm and it was 7:45. The evening nurse said I could have two visitors for 30 - 45 minutes, I had two groups of two who stayed over an hour. Sometimes rules are meant to be broken. They waited all day!

It’s fun to have visitors when they bring big smiles after hours.

LAST CHANCE TO TURN AWAY.

I am a sight, pink hair covered in blood and iodine.

FRANKENHEAD! Scary and gross but I wanted to see it.

I slept a lot in the hospital, thanks to the fact that my TV was broken. I had my own room and things were surprisingly quiet.

After everyone was done investigating all of my vitals and ensuring I was aware of my name, the date, and where I was at (I kept telling them I was in the Feinberg pavilion of Northwestern in room 1059 until they told me “hospital” was also an acceptable answer, no extra cred for nerdy details), they released me to go home.

We celebrated cutting off my hospital bracelet.

It takes a village. And some decent scissors.

Now that I am home I keep thinking of everything that did not go according to plan and how at every potential impasse, I focused on what was said to me repeatedly going into this. All of your thoughts, positive vibes, healing energy, and prayers came to me in the form of light. I did not allow myself to get discouraged or concerned as I knew you all had me covered. That may sound a bit unlike me to concede to a “groovy universal spirit” but it worked without me even trying. I allowed myself to be protected by your light.

But how should I classify this newfound source of support? Is there a term for groups of people focusing their energy on a single positive outcome? I find if I can name it, I can claim it. How do I make this shift a more permanent fixture in my life?

The answer was in a card I received from Wendy Wolf. She should teach a class on how to be an excellent human being. She signed it “Love + hugs”, then pointed out the plus sign looked like a bit like a “T”, thus “Love Thugs”.

I hereby christen you the LOVE THUGS.

I need to wrap up as this post is pushing the limits of acceptable email lengths. Next stop aka Step 2: Electric Boogaloo. June 16th they implant the battery in my chest.

PEACE OUT, MY THUGS OF LOVE 💜💜💜💜💜💜💜💜💜💜💜💜