Epilepsy Awareness Month Day 15: Friendships, Bonds and Blessings

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. 

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 . . .

Spilling the Family Secrets

After my mom died, I started writing a book about caring for her through her earlier depression and then as she succumbed to the cancer mercilessly thriving within her.  It took me ten years to write which, even by my perfectionist standards, was a tad on the lengthy side. 

I did wonder why it took me so long to write.  Sure, I had the usual (okay, the excessive) disclaimers but maybe there was something else that hindered my ability to finally call it “done.”

This book was something I was bursting to write.  I hoped the experiences I shared of growing up with a depressed mom and (most likely) bipolar father would help others in similar situations. (Having a brother with epilepsy didn’t even seem not “normal” to me).

As a family, we kept these things to ourselves and took care of the inevitable problems that resulted from these challenges ourselves. 

Then I wrote a book . . .

Both Mom and Dad had died when I published the book.  Dad knew I was working on it and assumed he would figure prominently and even joked about some of his most outrageous antics that should be included. He had started to read a few things I had written before he died but was always either effusive with the encouragement or indifferent.  (Dad never experienced what it was like in the middle of the road – always to one extreme or other). 

In the back of my mind, I was concerned about hurting his feelings with the book.  I was also very aware of how Mom would feel about it if she were still alive.  (I can see how this stops people from writing memoirs!).  I knew the book was written with love but didn’t want to hurt anyone’s feelings.  Growing up in a family concerned with appearances, this was a huge struggle for me. 

There isn’t forgiveness in the book but only because there is nothing for me to forgive.  We went through suicide attempts (Mom) and 3-day mental health holds (both Mom and Dad) but they had always tried their best so why would I have to forgive them?  There was nothing to forgive.  What we experienced was just part of what happened in our family, without malice, and I knew we all loved each other.  Forgiveness was an unnecessary part of the experience. 

I quieted my internal disclaimers and my concerns about hurting anyone’s feelings and hesitancy to spill the family secrets. 

I took a deep breath and published the book.

Then people started buying the book. Friends, acquaintances and extended family. 

Oh crap.  The extended family.

What would they think?  I loved my extended family and would never do anything to hurt them.  How would they feel about me opening the basement and letting everyone see what was down there? 

I don’t know for sure yet.  I did receive a very heartfelt letter from a couple members of my extended family. They both read the book and shared with me some tragic parts of their lives that I hadn’t known about.  I was honored they shared their own childhood experiences with me and hope sharing those experiences helped them in some way. 

Everyone has a story to tell and I like to listen to these stories.  My intent in telling my own story was to tell it with love and understanding and to let others know they are not alone with their family secrets – no matter what those secrets are.  What happened in my own family is nothing compared to what others have experienced but we all have something. 

Since publishing Forever a Caregiver, I’ve heard from many people who have said my book helped them realize they were not alone because they had similar childhoods.  They’ve told me this book that took me years to not only write but find the courage to actually publish, has helped them process their own experiences. 

These responses and those from my immediate and extended family make this ten year investment completely worth it. 

If you have a story (or family secret) to share, I would love to listen.  Acknowledging these experiences and sharing them can take away the hold they may still have on you. 

If you’d like your own copy of Forever a Caregiver, please visit here.