Today we meet Linda, a mom living in North Dakota with her
husband and her 43 year old son, Jason, who has had uncontrolled epilepsy since
he was 2 ½ years old. Linda and I
crossed paths last year during epilepsy awareness month and she shared her story with Robert’s Sister then. Linda
and I immediately had a connection because her Jason and my brother, Robert,
seem so similar. Close in age, same
uncontrolled seizures, same positive attitude. Meet Robert’s doppelganger:
 |
| Jason chooses Happy |
Robert’s Sister: When was your loved one first
diagnosed? Tell us about the process of
getting the diagnosis.
Jason was diagnosed in 1971. He was 2 1/2 years old. We live in a very rural community in North
Dakota so getting a diagnosis was long and difficult. We started at the ER at the local hospital,
we were then sent to the nearest neurologist (who was 180 miles away) for
testing and examination. Over the course
of several years, we went to the Mayo Clinic four times, the University of
Wisconsin, Gillette Children’s Hospital in Minnesota and the University of
Minnesota. It was a long, difficult
journey, not just mile-wise, but mentally and physically. We now have a neurologist in South Dakota and
at The Epilepsy Group in Minneapolis, Minnesota.
Robert’s Sister: How did you feel when Jason was first
diagnosed with epilepsy?
Scared, confused, angry, sad and helpless but hoping somehow
it would all work itself out in the end with an answer as to why and, of course,
with seizure control. After 41 years, sadly, we do not know why and Jason still
continues to seizure on a daily basis.
But now, I feel okay. It is what
it is and we just take each day as it comes but truthfully those feelings I had
in the early years still creep in from time to time. Sad is the one that gets
me the most.
Robert’s Sister: Did your family treat Jason differently after
the diagnosis? If so, how?
Jason's younger brothers grew up knowing Jason as a brother
who had seizures so, no, they just accepted him as he was. The extended family, of course went through
the same emotions as we did but overall he wasn't treated all that differently,
we were just more cautious for reasons of safety.
Robert’s Sister: Did the kids at school treat Jason
differently because he had epilepsy?
Yes, but not always in a bad way. Jason was a pioneer of sorts at our local
school. No one previously had seizures
to the extent Jason did or had behavior or mood problems (caused by medication)
like Jason. So for teachers and students
alike it was a learning process. Of
course, there were always someone who teased but for the most part the kids at
school and the teachers were protective of him when it came to seizures. But he was also left behind as far as forming
friendships, mainly because the kids just didn't understand why he acted the
way he did. Jason had many years of bad
behavior caused by the seizure medications he was on so kids tended to leave
him alone. They were friendly from a
distance but responded if it was required because of a seizure in the classroom
or on the playground. Jason was in
Special Ed with mainstreaming out to a few classes. For the most part, we had very understanding
teachers for Jason who were easy to work with.
Robert’s Sister: What treatments has Jason tried? What has worked? What hasn’t worked?
Jason has been on practically every medication out
there. None have really worked. Most caused horrible behavior and mood swings
so we finally settled on Carbatrol and Lorazepam which control the behavior the
best. On all the meds he still continued
to seizure so it just was a matter of deciding which med gave him the best
quality of life without turning him into a zombie. He still averages 30 seizures a month which
may seem like an unacceptable number but it just is what it is. Besides the medications, he had a Temporal
Lobe Lobectomy in 1983 which failed and a Vagus Nerve Stimulator Implant in 1999
which also failed. He was just hospitalized
a year ago for two more medication trials (“black label” drugs) and tests. Neither medication worked and from the testing
and because of his past history, the neurologists at The Epilepsy Group
informed us there were really no more options for Jason at this time.
Robert’s Sister: Do you think the medications affect how Jason
feels?
Most definitely!
Robert’s Sister: Have you done any advocacy work (individually
or with an organization)? What made you
want to be involved?
When Jason was first diagnosed with epilepsy, I became an
ARC member and was on the ARC Board for many, many years. I was also involved with Spark, a local
parents group. We worked with other
parents, teachers and administrators and the community educating them about special
need children and adults in our school system and community. I also helped,
along with many others, in making the dream of a sheltered workshop and group
home in our community a reality. I am
now a Crowdrise member trying to raise awareness and funding for epilepsy.
Robert’s Sister: How has epilepsy affected your life?
How has it not! From
the moment of Jason's first seizure, the whole dynamic of our family
changed. I quit my job. Instead of
vacations, we spent time in clinic or hospitals. We spent time trying to
convince Jason's brothers he wasn't being favored because of the amount of time
his dad and I devoted to his care. We
spent time trying to deal with the guilt I felt, because I knew that is exactly
how his brothers felt when they were younger. Having to ask family members to
"watch" Jason from to time for one reason or another and knowing they
really didn't feel all that comfortable taking care of him if one of us weren't
there too, so I just quit asking. I
could go on and on, since I think it affected every aspect of our life in one
way or another on a daily basis. But,
40+ years later, despite the seizures and all that goes with that, life is
pretty darn good compared to what many others face in their own little corner
of the world. I read somewhere that if
we all threw our troubles in one big pile, we would probably still take our own
back compared to what's in that pile.
Robert’s Sister: What is your favorite memory of Jason?
Jason giving his younger brother by eight years advice. His brother had come home for the weekend
from college tired, depressed and confused about where he wanted to go in his
life. And, as his Dad and I discussed
this with him most of the weekend, Jason sat quietly on the couch probably
taking in every word said but saying nothing.
When his brother came to say goodbye to him before heading back to
college, Jason got off the sofa and looked at Ryan and said, "You know,
Ryan, you can choose happy or sad. I choose happy, what do you choose?" Simple as that! Ryan said it was the best advice of the whole
weekend. That piece of advice Jason gave his younger brother has stayed with me
all these years. If he can choose happy
after all he has been through, then seriously, how can I complain how a life of
epilepsy has affected me and my life?
Robert’s Sister: Do you ever wish Jason didn’t have epilepsy?
Every second, minute, hour, day, week and year.
Robert’s Sister: What do you want people to know about
epilepsy?
To just be aware of the stigma and fear that still surrounds
those that live with epilepsy in the schools, workplace and life in
general. And of course the first aid
that goes along with someone having a seizure.
[Note from Robert’s Sister: First aid information from the
Epilepsy Foundation can be found here.]
Robert’s Sister: Is there anything else you want to say?
Jason will be 44 in a couple of months. He works at ABLE, Inc.
(a sheltered workshop here in town), five days a week, lives at home with us,
still thinks of his two younger brothers as his big brothers and is an uncle to
three nephews and two nieces who are so gentle and kind to him. He loves his
sofa, movies, puzzles and books and accepts life for what it is and never
complains about anything. If anyone asks
if he is having a good day, he will always nod yes. He still chooses Happy even if he isn't as
verbal as he once was.
Robert’s Sister: Please tell us how we can contact any
organizations you support or if you have a website or business.
Robert’s Sister: Thank you, Linda, for sharing your epilepsy
story!
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.
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