Thursday, July 21, 2011

You're My Sister

My sister heather has Epilepsy.  It all started about 20 years ago when she began having seizures.  They were terrifying.  I don't think any of us ever got used to seeing her have a seizure.  After having a grand-mal seizure, my sister would be "out" for the rest of the day, completely wasted.  Sometimes she would bite her tongue.  Sometimes she would stop breathing.  Always, she would wet the bed.  My sister has managed her Epilepsy over the years with increasing doses of very strong medications.  Medications that have had significant side-effects such as weight-gain, kidney and liver damage to name a few.  And still she would still have seizures.

As she has aged, her seizures have become more frequent, and she has started having "petit mal" seizures during the day.  They are just like their name suggests, smaller, shorter seizures where Heather would just zone out for a few seconds.  Sometimes she would be walking and just fall down, and it would take her a minute to get up and be "reachable."  She hasn't had a driver's license in years.

Well, she finally got fed up with the seizures, the uncertainty and the anxiety of it all and decided to take a drastic risk in order to put an end to her daily nightmare.  She decided to have the portion of her brain that was causing her seizure activity surgically removed.

She began with scores of testing and hospital stays, all designed to try to find where in her brain, her seizures were originating.  The only problem was, they couldn't find it.  They even sewed electrodes into her cheekbones to see if they could get a reading, with no success.  So the only thing left to try was a nightmarish procedure called "grid mapping,"  They opened up a portion of her skull, placed 60 electrodes on her brain, and closed her skull again using titanium screws.  Then they waited.  The doctors felt like they only needed one good seizure to get an accurate reading.  They got five in a row.  So two days later, they operated on my sister, removing a section (about 2/3rds of a twinkie size is how they explained it) of her brain.  We had no idea how my sister would come out of her surgery.  We didn't know, nor could the doctors guarantee, if she would have any speech, motor, or visual impairments.  We didn't know if she would lose her memory.  What we did know, what that the brain is an amazing thing, and that hers had already compensated for seizure damage by switching her speech and motor functions to opposite hemispheres.

Well, after her second surgery, I decided to go see her.  My husband and I had seen her before she went into her second surgery, after she had already been through her first.  She had a mass of electronic cords coming from a giant bandage on her head, and she was in pain, but she was in pretty good spirits, was able to laugh and talk, and generally looked and acted like my sister.  So after having seen her in that state, I was unprepared for what I found when I went up after her second surgery.

Although she had had all of her bandages removed and electrodes removed, she was swollen almost beyond recognition.  Her right eye was completely swollen shut.  Her hair had been buzzed. She had almost 40 staples covering the left side of her head in the shape of a U.  She also had a shunt that was draining fluid from her brain.  I was speechless.  I was not prepared to see her that way.

Because she was asleep, I decided not to wake her up, but just write her a note and leave instead.  But before I could get out the door, she opened her one eye and looked at me.  I didn't see any sign or recognition.  To make matters worse, she began speaking nonsensically.  I began to be worried.  She kept asking me if I could get that "white thing with a black top and if I thought that would help?"  Help what?  I eventually figured out that she was wondering if a warm washcloth would get the "stuff" out of her swollen eye.  So I warmed a washcloth and wiped her eye over and over again.  She asked me if it looked better.  I said no, because it didn't, but I probably should have said yes, just to make her feel better.

At that point my mom walked in her room and explained that her speech was normal for this type of brain surgery.  Her brain was simply learning to "rewire."  My mom left again to go get her a smoothie, and she and I were left alone.  She kept asking me to wipe her eye and so I did.  Before I left to go, I decided to ask my sister is she knew who I was.

"Heather, do you know who I am?"

She looked at me with her one good eye and said: "You're my sister."

I felt so relieved!  But I decided to probe further.

"Which sister?"

"My oldest sister."

"What's my name?"


When she said my that I started to cry.  She remembered me.  She knew who I was.  But even beyond that, her remembrance of me felt like it was more than a simple statement of fact.  It felt like an awareness of a connection between us, an acknowledgement of our sisterhood.  A bond, no matter what it's quality, that will never be broken, no matter what comes between us.

1 comment:

  1. This is incredible. I was in a car accident before my senior year of HS, which ended with me having to take meds for seizures for years. The thing that was the hardest was I *felt* like a different person. So I stopped taking the meds (yeah, CRAZY teenager!). Fortunately, I never had another seizure, but it helped me realize how physical conditions can influence our personality, our spirit.

    I'm so glad your sister came out okay. How is she doing now?