It
takes courage to share one’s story about epilepsy.
For
one thing, people are busy living with epilepsy or caring for someone with
epilepsy which takes an incredible amount of energy and time. It involves managing
doctors (many times, several doctors and several medical centers), medications,
treatments and school care. It involves managing relationships, fighting stigma
and educating the misinformed.
 |
| Kyle |
It
takes courage to share one’s story about epilepsy when it can be painful and
when the truth is very difficult to live much less put it out there for
everyone to see.
Aside
from that, it can be really difficult to talk about caring for our loved one.
We’re living it – why do we want to talk about it too?
Laurie
is an amazing mom who I think is very courageous for sharing her story. Her
family has been through all the difficult crap that comes with epilepsy and she
wanted to share her story. Laurie hadn’t written about it before but I am so
grateful she did. I admire Laurie for openly sharing so much of what her family
has been through for the past 20 years.
Robert’s Sister:
Tell us about the person you are caring for.
My
son, Kyle.
Robert’s Sister:
When was Kyle first diagnosed? Tell us about the process of getting the
diagnosis.
Kyle
had his first seizure at the age of six. I came home from a meeting and saw
Kyle snuggled in his dad's arms as they were watching TV. All of the sudden I
saw Kyle's eyes turn up and sideways into his head and he went into a full
blown seizure. His dad carried him downstairs and onto the floor. We called 911
and while we were waiting he was throwing up. Nothing the paramedics gave him
could stop the seizure. I jumped into the back of the ambulance and he
continued to seize.
In
the hospital they were giving him all kinds of things, but his seizure lasted 2
½ hours. There was no official diagnosis at that time. He had been a perfectly
healthy young boy. We didn't know what had caused this. It was a process of
many doctor visits, and continued seizures (another one was 1 ½ hours), and
calls to 911.
We
visited six hospitals, including those in NYC, Philadelphia and Boston, as well
as a call to Johns Hopkins in Baltimore. Kyle continued to have an enormous
amount of seizures after the initial one, and various kinds. At one point he
was having around 100 “mini” seizures a day. I don't know how his young body
wasn't exhausted. It probably was. How could it not be?
 |
| Kyle and Laurie |
Robert’s Sister:
How did you feel when Kyle was first diagnosed with epilepsy?
Of
course, the first thing is heartache and fear for your child. Then it was how
could this happen. I nursed Kyle a long time. He never had formula. We made
most of his food. He had regular doctor visits, and progressed at a “normal”
rate (I hate that word “normal”). Who's to really say what is “normal”?! He did
fall and hit his head on the edge of a wood burning stove as a toddler, needing
two layers of stitches. No scans or tests of any kind showed internal damage to
any area of the head or brain.
I
don't think at the time I was aware how epilepsy would change everything in our
family – forever. The common goal was “what should we do?” Were we doing our
best to help him? It was all-consuming. The endless tests, scans and medication
adjustments. There were constant hospital stays for video EEGs – having to sit
still each time while all those wires were glued to his head, hurting his scalp
(and the smell of the glue was so toxic).
Then,
the constant entertaining of a young boy who wanted to go out and play – not sit
in a bed for a week – again while being filmed. Wires would come off – Kyle
would peel them off. There were activities for kids in the hospital, but after
so many trips nothing was “just a kid being a kid.” How many times can one blow
up a rubber glove and toss it around the room! I stayed with him day and night,
and his dad was there so much too. I slept in bed with Kyle, in chairs, on
cots, whatever. Our families were watching our younger son, Keith. Not the same
as Mommy or Daddy...
Robert’s Sister:
Did your family treat Kyle differently after the diagnosis? If so, how?
I
think it's natural to have a protective guard up. We told all the neighbors in
the neighborhood what to do if he had a seizure at their house, and as he got
older and was outside with friends, told them as well. Kyle has a brother 2 ½
years younger than him, and I think he felt protective of him. When Kyle would
have a seizure in school, his brother, Keith, would run to the classroom. The
main people surrounding him had an Ativan in their “pocket” at all times to
break the seizure clusters.
Robert’s Sister:
Did the kids at school treat Kyle differently because he had epilepsy?
Absolutely.
Kids can be mean. Kyle was in special needs classes because of missing so much
school. I don't think – correction – I know he did not get proper teaching
despite the fact that we would go to IEP meetings, and had an advocate for a
while. We believed “Kyle was doing fine, etc.”
In
reality I believe he was cheated out of so much, and now at the age of 26 he still
struggles with the basics, despite being extremely intelligent. I thought we
were so on top of things, but were sold a bunch of malarky. I wish I could go
back and see exactly what was going on. Kyle was called “epilepsy kid” – a
painful “name” that Kyle remembers well to this day.
Robert’s Sister:
What treatments did Kyle try? What worked? What didn’t work?
Kyle
has been on so many drugs, I honestly would have to go back into pages of notes
and records to try and remember them all. Some had very specific side effects.
Depakote made Kyle put on excessive weight. I hardly recognize him in photos
during that time.
Something
else made him go through an aggressive period. His brother put a dead bolt lock
on his door. If his dad was working overnight (he was a fire captain), and Kyle
was acting out, I would call my neighbor who was a police officer. He would go
for a walk in the neighborhood with him and get him settled down and bring him
back. It was a very difficult period of time.
At
the age of 10, they were finally able to pin-point the focal point of the
seizures. Just prior to having a left frontal lobectomy, he had a WADA test
(torture in my book). I sat behind him in his hospital bed trying to keep him
calm as they “turned parts of his brain on and off,” so they could tell where
they would be able to cut.
Kyle
remained SEIZURE FREE for two years. Then he threw up one day with a stomach
virus. We didn't think to realize his meds had not been in his system long
enough. Nobody ever told us. Kyle had a seizure. I ended up having NYU
Comprehensive Epilepsy Center start a “Parents info section” in their
newsletter....things parents (or caregivers) had experienced and might help
someone else. Kyle had his fourth brain surgery this June. He had a shunt put
in to try and relieve an area of fluid causing pressure in his head, and
continuous headaches. He remains, with the exception of an occasional “aura,”
seizure free, taking medicines three times a day.
Robert’s Sister:
Do you think the medications affect how Kyle feels and behaves?
Yes,
I think Kyle just feels different. He is lethargic, and lacks drive. He has a
lot of anger that he has epilepsy, as well as how things played out during his
school years. He has not been able to accept things for how they were and get
past the anger. I was very sick when I was 20, and I missed out on a lot of
things my friends were doing. I can empathize with him – perhaps that is why I
had gotten sick – because I would end up being Kyle's mom.
Robert’s Sister:
Have you done any advocacy work (individually or with an organization)?
What made you
want to be involved?
I
donated some of my original photography for a gift auction for the Epilepsy
Foundation of NJ fundraiser, and solicited several people to donate desserts.
This year I have signed up for the committee. I have written an article that
was published in the FACES newsletter years back for NYU. I really could and
should (another word I dislike) be more active, but life has a way of getting
busy. I have also considered the Make-a-Wish-Foundation, as Kyle was granted a
wish when he was younger.
Robert’s Sister:
How has epilepsy affected your life?
I've
had so many mixed emotions. Fear, sadness for my child, anger, frustration, joy
for the control they've gotten over the seizures, sadness for time missed being
spent with our other son (who I think could have managed his own apartment at
12 years old).
I
feel frustration regarding all the suggestions I give to Kyle, even in regard
to “meet-ups” to make friends. He doesn't have a network of people his own age
that accept him. He has to come into his own. I worry. I wish he and his
brother were close. But that's how it is in families regardless of if anybody
has any challenges. I just wish it was different.
Kyle's
dad and I couldn't really have a “couple” life. We had to keep track of things,
sleep with our door open. At one point I was sleeping on the floor outside of
Kyle's room. It would be pretty accurate to say it changed the whole family
dynamics.
Robert’s Sister:
What is your favorite memory right now of Kyle?
Of
course as a mom, my heart and mind are filled with memories. We had a dog that
we rescued. She had a wonderful, affectionate personality but was destructive.
Kyle adored her and she would lay with him and he would hug her. I remember the
love he had for her. Kyle is a very kind person.
Robert’s Sister:
What do you want people to know about epilepsy?
I
want them to not be scared. People with epilepsy are NOT stupid. Kyle had the
highest IQ of any “kid” NYU had done surgery on at the time. He has an invention
patent-pending. Epilepsy affects people of all ages, including the senior
population. There are different types of epilepsy. Read. Become educated.
Robert’s Sister:
Is there anything else you want to say?
It
would be nice if people with any kind of challenges were more readily accepted
by the general population. And if you know a caregiver, ask what you can do to
help. Learn about their situation, and give them a “break.” Doing what we do,
though I wouldn't have it any other way, is lovingly exhausting.
Robert’s Sister:
Please tell us how we can contact any organizations you support or if you have
a website or business.
(I
am happy to donate a matted print of my choosing to legitimate epilepsy
fundraisers.)
Also,
be aware of this event:
SAVE
THE DATE!
Come back and join us for our 6th Annual Paint the Pony Purple event for
epilepsy awareness on Sunday, March 12th!
We
are returning for our 6th year at The Stone Pony for a purple-themed,
family-friendly day full of entertainment, and refreshments!
Paint
the Pony Purple for Epilepsy
Sunday,
March 12, 2017 1-5 pm
The
Stone Pony
913
Ocean Ave, Asbury Park, NJ 07712
I am very grateful Laurie shared Kyle and
her family with us and I hope their story helps other families going through
their own epilepsy diagnosis and treatment. It can be a brutal road but all you
can do is your best and Laurie and her family clearly did just that.
I think all caregivers go through
periods of reflection and have moments of regret or wish things would have been
different. It’s important for us to cut ourselves the same slack and give
ourselves the same grace we would give to others.
Also, I know today is the last
day of November which officially ends Epilepsy Awareness Month but I have one more
follow-up interview tomorrow: mine! J
Trish
