“Facebook friend.”
That phrase diminishes the absolutely real
friendships and connections people make using social media so I won’t use it
here. I met Eileen through a friend of a friend and we have followed each other’s
caregiving journey for a few years now.
 |
| Eileen and her son, Will |
We may not have met in person but she has touched my
heart with the stories of her kindhearted, goofy and genuinely sweet son who
just happens to also have seizures.
Meeting face-to-face does not define a friendship
and seizures do not define a person. I think you will be just as convinced of
this after reading about Eileen and her son, Will.
Robert's
Sister: Tell us about the person you are caring for.
I
am a caregiver for my son, Will Orsini. Will was born in South Korea and joined
our family when he was 5 months old. He is now 23 years old and has been having
seizures since he was 6. At that time, he had been developing normally and
showed no signs of physical or developmental challenges.
Robert's Sister: When was Will first diagnosed? Tell us about the process of getting the diagnosis.
Will
was diagnosed in 1999. He had been sharing with us that he was seeing pictures.
We thought that he was daydreaming, but then then started wondering if it was a
psychological issue. One day he tripped because he said the picture came into
his brain and he couldn't see. At that point we felt we might be dealing with
something physical. Shortly after that incident, Will started screaming, saying
that there was a scary picture in his brain, followed by him losing his sight
(no picture) for a couple of minutes. He was rushed to his pediatrician, who
arranged emergency appointments with a pediatric ophthalmologist and
neurologist. The ophthalmologist did not think it was a visual issue. The
neurologist asked us to get an EEG and MRI. Ten days later, the neurologist
called us to inform us that Will was having seizures in the occipital lobe, and
he was started on seizure medication.
Robert's
Sister: How did you feel when Will was first diagnosed with epilepsy?
We
were frightened, worried, lost and very naive. The idea of our son having a
chronic illness was devastating, and yet we were innocent enough to believe
that lots of people have seizures and there's medication out there so maybe
everything will be ok.
Our
daughter was 12 at the time and rarely had had to see the doctor even for
normal childhood maladies, so regular doctor visits were unchartered territory.
The pediatric neurologist we initially saw was not very communicative and
discouraged any type of self-educating. He never shared with us how bad Will's
EEG was, but thankfully was worried enough about it to refer us to a colleague.
We ended up transferring Will to his care for one year. When the results of a
sleep-deprived EEG ordered by the newer doctor landed Will in the ER because
the doctor was out of town and the doctor covered for him panicked, we knew
that there had to be a better place for Will. We made an appointment at the
Children's Hospital of Philadelphia in 2000, and never looked back.
Robert's Sister: Did your family treat Will differently because he had epilepsy? If so, how?
In
our immediate family, as Will was only 6, he was already supervised very
closely, but that stepped up a bit as we were recording each seizure. In our
extended family, Will already was treated differently, in a very good way,
because he was the youngest grandchild by 6 years. Everyone was in shock that
our boy was sick, but like me, were scared yet cautiously optimistic.
Robert's
Sister: Did the kids at school treat Will differently because he had epilepsy?
As
Will's seizures were on the quiet side, and he was only 6, there was never a
discussion with classmates. As he progressively got worse, requiring 1-on-1
supervision as well as being in a special education contained classroom, I'm
sure he was perceived as different, but I don't believe he was aware. The fact
that Will needed all this extra support/supervision should have been
devastating, but at that point, we were relieved that he was being so closely
supervised not only for his physical safety but being protected from possible
peer unkindness.
Robert's Sister: What treatments did Will try? What worked? What didn't work?
In
the 17 years that Will has been seizing, I think it is safe to say that he has
tried pretty much everything out there. Some were poison to him, i.e.,
phenobarbital, bromides, Zonegran, Lyrica, and Keppra to name a few. Some
agreed with him, but were ineffective. Some agree with him, help control
seizures, but lose their efficacy after a while.
There
are meds that he has gone on and off and then back on over the years with mixed
success. These would include Depakote, Lamictal, Tranxene, Topamax, and
Felbatol. Will was also evaluated for a resection, but 5 days into the Phase 2
monitoring, it was determined that his seizures were firing off all over his
brain, so taking the chance to resect one portion would likely present a larger
chance of damage/complications than providing seizure relief.
Will
has also been on the Ketogenic Diet twice. The first time, when he was 10/11, for
18 months. He was an exemplary participant, and was actually seizure-free,
while on no meds, for 6 weeks. However, the seizures started kicking in again,
and we were also having difficulties maintaining his weight. The second time
was when he was in his mid-teens. He was on a more relaxed version of the diet,
also medically supervised, but it was not effective in helping to control Will's
seizures.
Lastly,
Will has had a VNS since 2001. Initially, we were unsure if it was helping out
at all as Will was, as he is now, seizing multiple times daily. However, when a
sharp increase in seizures coincided with a dead battery reading on his VNS, we
felt it was proof that it was an effective part of Will's seizure arsenal. Will
just had his 4th VNS implanted in June 2016.
Robert's
Sister: Do you think the medications affect how Will feels and behaves?
Most
definitely. Overall, most would judge Will to be a very mild, even-tempered
person. However, over the years we've had tears, anger, confusion,
inappropriate/long lasting focus on one issue, hyperactivity, lethargy,
paranoia, etc., that can all be linked directly to a medication or combination
of medications he is on. Just recently, while in the midst of med changes and
adjusting to a new VNS, he has been doing the over-focusing thing, while
physically, his appetite has deserted him and he has lost 34 lbs. I cannot
imagine how confusing and frustrating this must be for him.
Robert's Sister: Have you done any advocacy work (individually or with an organization)? What made you want to be involved?
Honestly,
other than fundraisers for the Epilepsy Foundation of NJ, I find myself being a
very insular person as far as advocacy is concerned. I am happy to answer
questions for friends of friends who are going through a similar experience, as
well as for perfect strangers through the Children's Hospital of Philadelphia.
However, especially since my husband left 5+ years ago, I find myself often
feeling overwhelmed with Will's care. When he's with his dad (Wednesdays for
dinner, Saturdays overnight to Sunday PM), I'm grateful to either have time to
myself, spend time with my daughter or to connect with friends. I look at all
that you do and wish that I had the emotional strength to be more giving.
Robert's
Sister: How has epilepsy affected your life?
My
role as Will's mom has changed little in that my big boy continues to require
the same amount of supervision and care that he did when he was a little boy.
There are times when this is very wearying because in the "normal"
course of life, your children grow up, move on to a certain degree, and a 58
year old woman starts to explore what she would like to do for the rest other
life. Being Will's full time caregiver as well as his custodial parent can
present a unique set of challenges...he gets home from his 4 hour volunteer
program at 1:30, and then it is only he and I until 10/11 pm. However, I am on
a constant quest to be grateful that I can stay home and be his full time
caregiver, as well as stopping the "what now?" lament by embracing
that there are a lot of "new normals" that need to be accepted, and
just move on.
Robert's
Sister: What is your favorite memory of Will right now?
So
many, but this one is so indicative of who Will is. I have a muscle disease
that can render me a little weak/unsteady of my feet at times. One morning,
while I was standing in front of the open refrigerator putting food away,
Potter (Will's service dog) playfully ran by me very quickly, just brushing my
leg. Unfortunately, on that day, it was enough to land me flat on my back.
As I was catching my breath (I was fine), I was thinking that Will, who was
sitting nearby eating his breakfast, must be dying with suppressed laughter as
it must have looked like something out of Tom & Jerry. All of a sudden, I
felt two hands under my shoulders, attempting to lift me off of the floor. No
laughing, no joking, not even talking . . . just calmly helping his mom off of
the floor. It truly touched my heartstrings and absolutely was an accurate
example of the essence of Will.
Robert's
Sister: What do you want people to know about epilepsy?
In
general, I feel that people have a very one-dimensional vision of epilepsy.
Either it is some poor, pathetic crazily sick person convulsing, losing control
of bodily functions, needing to be hospitalized with every seizure, OR a
condition which can be successfully treated with medication, so what's the big
deal?
There
are so many layers, so many different ways that people are affected by
epilepsy, so many types of seizures, and no two cases are alike. Will began
life developing as a normal child; started seizing at the age of 6, and
epilepsy never looked back as it ravaged his wonderful brain.
He
has times when he appears very unaffected and normal for brief periods of time,
and people are always very anxious to paint an unrealistic picture of him being
cured. They don't understand that these are brief intervals, and even during
these intervals, if they spent time truly interacting with Will, that his
permanent brain damage will not go away AND he is still having small seizures
that they cannot see. I've had professionals at school say that he seems to do
better when he's busy!
I
think that people are very intimidated by epilepsy because there are no pat
answers for diagnosis, identifying seizures, treatment, etc., so they go ahead
and scarily simplify it themselves. I wish people would throw away their
preconceived notions of this damnable condition, and open their minds and truly
listen to the individuals and their families who are actually walking the walk.
Robert's
Sister: Is there anything else you want to say?
Not
really, except to thank you for giving me the chance to answer these questions.
It has proven to be very cathartic. :-)
Robert's
Sister: Please tell us how we can contact any organizations you support or if
you have a website or business.
Nothing
comes to mind right now, but thank you so much for all that you do. Your
efforts in all directions inspire and give support, strength and hope to many,
including me.
I think what
Eileen says about epilepsy being different for everyone is so true. There are
so many different kinds of seizures and they wreak havoc on the brain – not to
mention the medications that can cause so many different (and awful)
side-effects.
What Eileen is
doing as a single mom is phenomenal. Caregiving is tough work but Will is well
taken care of and protected and it is clear he loves his mom. (I have to admit,
the story of Will picking Eileen up from the kitchen floor brought me to tears.)
I am grateful to
Eileen for her time and appreciate her true friendship.
Trish
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