A devastating side-effect of epilepsy is social isolation.
The Epilepsy Society of the UK discusses
the link between epilepsy and mood which, of course, can affect personal
relationships.
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| Robert and Carol: a bond and blessing |
Whether this is because of the medications or the fear of
having a seizure in public, many people with epilepsy withdraw, become
depressed, lose friends and alienate family. When Robert was a teenager he was
surly, angry and depressed.
I found him once sitting in a dark closet (which is a little
disconcerting since I thought I was just telling everyone it was time for
dinner).
Robert has come a long way from those difficult days and now
has a way of developing friendships and creating bonds with those around
him. Maybe it is his deep religious
beliefs and the fact that he went to church regularly (oh let me use a pun and
say “religiously!”).
Robert went to church religiously. (Thanks for letting me get that out of my
system.)
Whatever the reason, I am happy for the change. It is a relief to see Robert excited to have
friends at Day Program and to see him be friendly with everyone he meets. He is no longer socially isolated.
In fact, if he doesn’t say hi when passing by it just means
he didn’t see you.
There are special people in Robert’s life and I can’t
logically explain why these bonds are stronger than any others. I guess in the same way I can’t explain why
some people remain friends for life and others drift away, I can’t explain
Robert’s magic touch with certain people.
Robert prays for people he has never met – my caregiving
friends that have grown to love Robert just by reading about him.
Robert always had a close relationship with our grandmother
and called her daily when they lived in the same town. I have tried to keep
that relationship going but that has been a challenge (mainly because Robert
has a difficult time talking on the phone and he can be hard to
understand).
Robert also had a relationship with Judy, a woman who also
has epilepsy and who Robert lived with for many years. I believe they met at an epilepsy support
group which is a great way to combat social isolation.
Robert has a terrific, “jokey” relationship with Richard.
Robert adores Other Brother and proudly tells everyone that he is a “bookkeeper
for the city of San Francisco.” (That’s
kind of close – he’s a principal in an actuarial firm located in San
Francisco.)
I know Robert loves me but he loves telling people I am five
years older than him even more. J
One of the most special relationships I have the privilege
of witnessing is that of Carol and Robert.
Carol is Richard’s mom (my mother-in-law) and is an absolute gem of a
woman. She’s tough, independent and
funny. And she adores Robert!
Robert loves seeing her and has been known to even offer her
a hug (and he’s not a huggy person).
The clip today is of Carol and Robert talking about their
relationship. Robert is clearly
emotional when talking and he is not an emotional guy (much of that is his meds
as extreme emotions are a seizure trigger for him). They both tell each other how blessed they
are to know one another.
I hope everyone can find a special friendship or two and not
let depression, fear or anxiety prevent those relationships. Given my experience with attempted suicide in
my family (mom), however, I am committed to talking openly about depression and
suicide so want to briefly address that issue here.
If things seem that bleak, please reach out for help. Reach out to the National Suicide Prevention
Lifeline at 1-800-273-TALK (8255).
Call 911. Notify your doctor of
these feelings so a medication change or adjustment can be considered. Reach
out to a friend or family member.
The interview with Carol and Robert really is special to
watch (one which would have been even better if I hadn’t set up the interview
right next to a major thoroughfare)!
I’m learning . . .
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