From Here to There: My brain surgery story

In May, 2001 I was a senior at UMass, Amherst, about to graduate with my BS in Biology. I was applying to biotech companies and labs in Boston, looking forward to graduation and making plans for the summer.

One fine, sunny, spring day, I got a headache.  I have a long history of migraines, so this headache wasn't particularly bad, as headaches go. I took something for it and then went out for pizza and a smoothie with one of my roommates.

As we walked back to the apartment afterwards, I felt a pressure change in my left ear and it began to ring. I remember thinking that we must be about to get a weather change, but when I looked up - the sky was blue and clear to the horizon.

The ringing in my ear worsened over the next hour or so. As I laid on the couch, my left hand and foot fell asleep - prickling and tingling. I remember dangling them off the couch - attempting to wake them up when my entire left side went numb and tingly. One nostril. Half my lip. Half my tongue.

I called my parents and we decided perhaps this was a new type of migraine symptom. My roommate took me to the University health center. They, too, agreed this was likely a migraine and sent me home.

When I woke the next day, the tingly numbness remained. I returned to the health clinic and was advised to go to the local hospital. Once there I had a CAT scan - and after that, everything changed.

There was bleeding in my brain.

The doctor asked if he could call and speak to my parents. When I told him my father's cell number from memory he said,

"See, that's good."

I got a little scared at that point.

My father arrived, having broken a few land-speed records and I was admitted to the hospital for additional testing.

There was no explanation for the bleeding. I was neither a hockey player nor a cocaine user (both of whom develop this type of hemorrhage, apparently).

I was informed that due to the location of the bleed, deep in the center of my brain (my right hypothalamus to be exact) the offending blood vessel was inoperable.

I left the hospital with a cane to help me walk on my numb left foot, and a plan to wait and see what happened.

A day later the ringing in my ear worsened.  The bleed was worsening, and I was transferred by ambulance to Mass General Hospital. Funny story - the ambulance drivers got a bit lost, asked a local traffic officer for directions and my father beat us to the hospital. I'll never forget the look on his face when they wheeled me in.

In Boston, my condition was suddenly not only operable but a bit old hat. I had MRI, MRA,  and ultrasounds and was told I would have surgery in about a month.

Another funny story, in true I-am-a-graduating-senior style I had been taking kickboxing and yoga as my final 2 electives that year and I was required to complete those classes in order to graduate. As I couldn't participate, I watched tai-bo videos (no, seriously, ask my mom - she was there) to complete the kickboxing class and I wrote an essay to complete the  yoga class.

One month later, I had surgery.

Here's me - the eve of  my surgery.
One last photo of my hair before they shaved it.

My parents and my beloved niece in pre-op with me.
My sister totally got yelled at for taking pictures.

I remember being wheeled around what felt like the basement of Mass General. The halls were plain, white, and cluttered with scary medical equipment. The room they took  me to was freezing. The staff was very kind. The anesthesiologist gave me something to calm my nerves. Then a mask and counting backwards from 10.

The surgery took 12 hours. Much longer than we had anticipated. My family waited and waited while everyone else went home.

My beloved niece.

I remember waking up from the anesthesia and being extubated with my eyes taped shut.

Then I remember being wheeled down a long hallway to see my family. First I said, "That's my dad! He's wearing yellow!" because I was happy he was in the same shirt he had been in that morning, it meant that I had woken up the same day.

When they stopped to let me talk to my parents I said, "That sucked" because I thought it would make them laugh - it did not - and they all yelled at me for it later.

I spent that night in the Pediatric ICU - it was the only bed available. I remember asking repeatedly for water that I wasn't allowed to have. I had nightmares about unsolvable math problems and huge hulking pieces of machinery.

I've been told I wasn't quite myself after surgery. I had nystagmus - which made my eyes move in a bizarre way and I had a large visual field deficit. A large portion of the left upper quadrant of my visual field would be forever shrouded in static.

I was in the hospital only 2 nights and then sent home.

The two marks in the center of my forehead are from my skull being screwed into
 a halo to hold me still during surgery. I had them all over my head.

40 staples.
They hurt coming out.

My first post-op shower.
Starting to look like myself again.

 

I rocked quite the comb-over, no?

I took about a month to recover and then I marched right on with my life. Got a job in a lab in Boston, learned the ins and outs of public transportation, and let my hair grow back in.

In hindsight I realize that I did not emotionally process this experience well at the time. I stayed strong, stayed positive and didn't let it slow me down.

There was no real follow up care. I went in to have the staples removed, was deemed "cured," and set free from neurology.

I had horrible nightmares.

My future husband used to sit by me until I fell asleep.

I worked in biotech for awhile and then returned to school for nursing. My experience as a patient made me want to care for others more directly than with test tubes and notebooks.

About midway through nursing school I developed panic attacks and generalized anxiety. I went to therapy, talking for hours about my experience. Finally acknowledging the fear and pain I had smiled my way through.

I also began to acknowledge the permanent changes in my body. My left foot and parts of my left leg are permanently asleep, and my left arm had lost some of its' range of motion.

I found my way to yoga and pilates. I can honestly say that my yoga practice healed my heart. Through yoga I started to trust my body again. I hadn't even realized that I was no longer comfortable in my own, mortal, fragile skin.

Yoga allowed me to feel safe in my body again.

This body is mortal, there's no getting around that - but yoga helped me cope with that reality, and helped me breathe easily again.

Pilates made me feel strong. Helped me regain what I could in my left arm. With my trainer, I did things I didn't think I'd ever be strong enough to do, and that was healing as well.

My body is a safe place to be. My body is strong.

Now, it is the fondest wish of my heart to help others find peace in their body. It is possible.

No matter where we are right now, we can get from here to there.