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 . . .

Blessings and Gratitude All Around

One weekend a few months ago, Robert asked me to find his pocket phone book.  I knew we didn’t have this but I looked in his closet anyway.  I told Robert there was no pocket phone book to be found.

Robert's Bible cover

The next weekend, he asked again. I explained we didn’t have it.

This happened for several more weekends.

I finally realized he wanted a particular phone number so asked him who he wanted to call.

“My church.”

Well, goodness.  I told him I could find the phone number of the church and could call them.  He liked that idea so I called the church and left a message, not really expecting a call back. After all, Robert has been sending Christmas cards to this church for the past five years and hasn’t received a call or card back.

As gently as I could, I told Robert not to expect a response. "I'm sure they won't call" is pretty close to what I said.  

The following weekend, Robert asked for his pocket phone book.

Oh boy.  This topic is not going away.  I had to get a little tougher with my message.

I explained that we had already called the church and left a message. Robert was right there when I had called! I explained that I already looked for the pocket phone book and it was gone.

It’s gone – we do not have it.

“It’s at the other house.”

No – it’s gone; it’s gone.  It’s really gone. There’s nothing more I can do.  I’m sorry.

Silence and a stare.  Never a good combination.

That was on a Sunday. 

Monday morning, someone from Robert’s church called me. 

If ever there was a time for a hallelujah this was it!

Hallelujah!

He remembered Robert and was grateful I had called because they wondered if Robert was okay.  They had grown fond of him and had hoped for the best when he was no longer attending the church. It was great to hear how much Robert meant to this person.  He promised to have one of the pastors call Robert and we discussed the best times to call.

I was thrilled to come home and tell Robert a pastor from his church was going to call him. Robert’s eyes got a little bigger and brighter and his smile was spread across his face.

This meant so much to him; I hoped the pastor really would call and would call soon.

Two nights later, Pastor Franz called to talk with Robert but first he talked with me for quite some time.

Pastor Franz told me how much Robert meant to him and the church. He explained that Robert helped him (a pastor!) solidify his own faith way back when and he was extremely grateful we contacted him and was grateful to know how Robert was doing. Pastor Franz told me he had been on a bad path but he admired Robert’s faith and conviction and their conversations helped put him on the path to becoming a pastor.

For almost 15 years I have held a grudge against this church because a few of Robert’s church friends had convinced Robert God had cured him of epilepsy and he no longer needed to take his anti-seizure medication.  I don’t even know if this church was the same one Pastor Franz was from but I held a grudge against “Robert’s Church” anyway. As a result of this irresponsible advice, Robert had several relentless seizures while our entire family was visiting the ocean with my mom who was dying of cancer. 

To say I held a grudge is an understatement.

After talking with Pastor Franz, I put Robert on the phone.  Pastor Franz spoke with Robert for several minutes (even though it can be difficult to understand Robert over the phone) and I overheard them praying together, talking about God and Jesus. It appeared Pastor Franz was asking Robert if he needed anything but Robert didn’t quite understand him.  They eventually said their goodbyes and Robert handed me the phone again with a look of pure joy on his face.

Pastor Franz thanked me for contacting him and promised to send DVDs of their services - every week - and offered to send anything else Robert needed. 

I in turn thanked Pastor Franz for giving Robert something I can’t give him – a prayer with someone from his church whom he clearly respects.

Robert was elated the rest of the evening and I could feel my heart letting go of the grudge. It kind of didn’t want to but I thought it was time.

I am very grateful for what Pastor Franz gave Robert that evening and am grateful for his gifts of the promised DVDs which faithfully arrive in our mailbox twice a week.

I am also grateful to Pastor Franz for giving me the gift of forgiveness of people who were no doubt well-intentioned but woefully (and dangerously) uninformed.