What Epilepsy Means to Me: Kathy Patterson and her daughter, Jenny

Here it is mid-month and I have to say I am absolutely amazed at the courage and perseverance shown by each and every one of the people interviewed this month. 

I also have to apologize.  When I was creating my interview questions, I debated about asking, “Do you wish your loved one didn’t have epilepsy?” because I didn’t want to sound like one of those  idiotic newscasters who asks, “How does it feel to have your house burn down?” 

DUH!  HOW DO YOU THINK IT FEELS??

I chose to keep the question and have been surprised at the variety of ways people answer the question so was happy to have left it in.

Until now.  Our interview today is with Kathy Patterson who lost her 18 year old daughter, Jenny, to epilepsy in 1994.  I really wish I had deleted that question for Kathy but I didn’t and now I feel awful about it. My heart goes out to Kathy for losing her daughter and I can only hope my question (or any of them for that matter) didn’t make this interview more painful for her. 

Kathy was gracious enough to answer my questions and talk about her daughter and I am grateful to be able to learn about her Jenny. 

But I think we can all agree that I should definitely NOT be a newscaster . . .

Robert’s Sister:  When was your loved one first diagnosed?  Tell us about the process of getting the diagnosis. 

Jenny - What a radiant smile!

Jenny was first diagnosed when she was 12.  She was at her first appointment with the orthodontist and dozing off in the chair.  She got up to go to the bathroom and rinse her mouth when the staff heard a great commotion.  They knocked on the door, and when she didn’t answer, they went in to find her on the floor and not really aware of anything.  She didn’t remember what happened.   They thought maybe she had slipped and fell since the floor was wet, but the sink was dry so they didn’t know where the wet floor came from.  (As it turned out, the wet floor came from her… it’s common to lose your bladder when you have a seizure).  We took her to her pediatrician who suspected epilepsy and referred us to a neurosurgeon.  He did an EEG and tried to do a cat scan, but she had another seizure on the table, which pretty much confirmed the diagnosis.   

Robert’s Sister:  How did you feel when Jenny was first diagnosed with epilepsy?

We were shocked.  We read everything available and tried to figure out where this came from.  It’s unclear if genetics plays a part, but both her father’s uncle, and my paternal grandfather both had epilepsy.  We figured we’d all take it in stride and do what needed to be done to lessen the consequences of the disease.  As it turned out, her seizures were caused by noise during the twilight of waking up or falling asleep.  Her doctor called it “nocturnal epilepsy.”  She never had a seizure when she was wide awake.  We had to make adjustments – turn off her alarm clock, the ringer on her phone, and the answering machine.  We had to wake her very gently in the morning. 

Robert’s Sister:  Did your family treat Jenny differently after the diagnosis?  If so, how?  

Jenny was the only child left at home; her two step-siblings were grown and gone.  We were determined to have her continue to lead a normal life and since she was fine when she was awake, we figured it would be relatively easy.  She was quite athletic and there was no reason for any of her sports to stop.  The only thing she could not do was scuba dive.  Her step-dad was a scuba instructor and she wanted to learn.  We could not allow that.  A seizure underwater was a death sentence – kind of ironic; in retrospect, we probably should have let her try.

Robert’s Sister:  Did the kids at school treat Jenny differently because they had epilepsy? 

Not really.  Her friends were interested to know what to do if she had a seizure when they were around.   As it happened, shortly after she was diagnosed some of them were at our house just lazing around and Jenny had a seizure.  They were compassionate and cared and wanted to do something, but as you know, there is nothing to do.  The seizure has to run its course.  Jen would get horrible headaches after a seizure, so there were times she had to stay home from school.  We made her wear a medical bracelet and a friend asked her what the bracelet was for because he also wore one.  He was also epileptic, made a comment about ‘shaking,’ which made her laugh.  She immediately felt less self-conscious, although the bracelet was soon taken off and not worn again. 

Robert’s Sister:  What treatments did Jenny try?   What worked?  What didn’t work? 

The only medication she took was Phenobarbital, although the dosage had to be monitored and adjusted as she got older.  She hated having to take it.  She had always been very bright, never needed to study much and always got very good grades.  Suddenly her concentration was not what it used to be and she had to work to get the good grades.  The Phenobarbital worked, though, and she had much fewer seizures. 

Robert’s Sister:  Do you think the medications affected how Jenny felt?

She died because she stopped taking her meds.  She took a smaller dosage in the morning than she did at night, but it still affected her concentration.  She was in her first year of college and wanted to do well.  She had gone several months without a grand mal, so she figured she didn’t need the meds.  The final seizure caused so much adrenaline in her that it stopped her heart.  She had spent the night at a friend’s house and her friend did not know CPR.  The EMT’s were unable to revive her. 

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

We have not. 

Robert’s Sister:   How has epilepsy affected your life?

Epilepsy took our daughter away from us.  It has taken years to accept that.  However, our faith has helped us create a “new normal” without her.  We know that she touched people in a special way and that is very comforting.   Our house had always been the gathering place for her friends.  We thought we knew all the kids she hung with.  During her memorial service, the Monsignor asked if anyone would like to speak about her.  A young man from her high school who we had never seen before got up to speak.  He talked about how Jenny had probably saved him from a bad life of drugs and alcohol.  She was a true friend of his because she cared enough to tell him the truth.  To this day we don’t know who he was, but I pray he’s remembering her and still doing well. 

Robert’s Sister:  What is your favorite memory of Jenny? 

Her entire life is my favorite memory. She never went through the “I hate my parents” stage.  She had a great sense of humor and was fun to be around.  She would cry at the movies then be embarrassed because of it.  She was tall and very thin, but could out-eat her football player boyfriend – and not be embarrassed about that!  She had very keen insight about people.  She was an observer… she would sit back and take everything in, then when she had something to say, it was usually profound.  Even at a young age not much got past her.  When she was around 7, we were having a good discussion about something while we were eating dinner.  I was trying to word my next sentence carefully so I slowly said, “it scares me to think…” when Jenny chimed in, “it scares us when you think, too, mom!”  That was the end of the serious discussion.

Robert’s Sister:  Do you ever wish Jenny didn’t have epilepsy?

Of course. 

Robert’s Sister:  What do you want people to know about epilepsy?

That they should never, ever stop taking their meds.  Epilepsy is not curable (at least not now).  Medication helps control it.  They have to take it seriously.

Robert’s Sister:  Is there anything else you want to say?

She once told us that when she was having a seizure she felt like she was drowning – she had a feeling of being underwater.  That would cause her to gasp for breath; occasionally she would stop breathing.  During her seizures, her dad would gently call her name; she could hear him, but couldn’t respond.  It was comforting to her to hear his voice and in her words it would “call her back.” 

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business. 

In lieu of flowers at her memorial, we requested donations to the Epilepsy Foundation. 

Robert’s Sister:  Thank you, Kathy, for your courage in sharing Jenny with us.  By sharing Jenny’s story, she will continue to affect more people than you know.

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.