Facebook – and other lies we tell ourselves

I went to a wake this afternoon. It seems to be something I have been doing far too often lately.

This one was for an old friend.

Let me clarify – he was far from old.  As a matter of fact he was just 43.  But he was a friend from high school, which apparently was a long time ago.

laugh a little louder

In high school we had a thriving youth group at my church.  We spent so much time together, they became extended family.  We came from different schools, and our ages ranged – but there was a love and peace and acceptance among us that was really something spectacular.

We met at the church sometimes.  We watched movies, played games and talked.

We sometimes went on retreats- Koinonia, Pennsylvania, Virginia.  We traveled to youth gatherings.  We laughed, we cried. We held each other up.

youth group

But time got in the way and years passed.  College led into grad school, and husbands, and wives, and jobs.  Then there were children and houses… and, you know how it goes.

Before you realize it – it has been 10, 15, 20 years since you have chatted with a friend.  Nothing ever happened to cause the separation, just life – getting in the way of keeping in touch with those we love.

I met up with him last year, at the wake for his mother.  We talked for a while – like old times.  Years seem to evaporate in the presence of those we truly love.  You see he was one of the “good guys,” and possessed the capability to light up a room with his sense of humor.  He showed compassion for everyone, and had the ability to make you want to talk to him.  I left that day, not overly confident we would see each other again soon, but still missing my high school youth group, and the security that the net of dear friends had woven for me through some trying times.

So when the news came this week that he had died.  Without warning or explanation.  That he had left behind a wife, 2 children, his dad, 2 brothers, 2 sisters-in-law, and their children – I was absolutely stunned.  That’s just not the way its supposed to go down.  He was one of the good guys.

So I found myself today in a funeral home in New Jersey having an impromptu reunion with my high school youth group.  Most of us are “in touch” via facebook.  I read an article here, see a picture there.  I catch a quick status update from time to time.  Sometimes I click “like.”  And somewhere in my head I have justified that this constitutes remaining in touch.  I was appalled at myself for even allowing the illusion to fester.  Don’t misunderstand me.  Facebook, and its social networking concept is fantastic.  But it does not – nor can it ever- replace conversation, interaction, a hug, or – as we used to say in high school – a “nose pet.”


Facebook has been a blessing for me in so many ways.  I have “met” so many other Cowden’s Syndrome patients.  I have learned about, and shared experiences with others who suffer from rare diseases.  Meghan has connected with two young Cowden’s friends – one on a different continent.  But it still doesn’t fix the inherent problem with being able to look at a computer screen and delude yourself into believing you are “connected.”

I don’t know what the answer is.  I, like all of my friends, lead an incredibly busy life.  But I do know that leaving all my connections, and contacts with the people I love to facebook – reducing them to “likes” on a page, is not the answer.  I looked around the small group gathered in the room, and I felt genuine love for these people.  I enjoy their company.  I find them funny and engaging, just as I did some 20 plus years ago.

As we reflected on our friend – we did our best to catch up.  Then we hugged and went our separate ways.

I hope this will serve as a wake up for me, and that one at a time I will at least find the time to send an Email, or make a call.  Life is busy – but there has to be some time – just a few minutes.  There has to be.

We can’t be destined to meet again only at the next wake, when another one of the good guys is gone too soon.


Mourning his loss… hoping he is getting plenty of “nose pets” in heaven.

What’s in a name?

It has definitely been a week, (ok – month…year) for reflection.

I started this blog in May of this year, after some encouragement from another Cowden’s sufferer.  Once I realize how to do it, I was prompted to name the blog.  I didn’t really give it much thought.  I went with the first thing that popped into my head.  And so, “beatingcowdens” was born.

The name seemed appropriate at the time, and I guess it still is.  But because situations, and people are ever changing, I don’t think the name means the same thing to me as it did 7 months ago.  Back then I had already had my double mastectomy, and I think I still was under the notion that if we got out in front of enough things we truly could “beat” Cowden’s Syndrome, the same way you “beat” a football team.

Well, I have come to realize to “beat” it would be to “defeat” it, and since I lack the power to change my genetic makeup, that simply can’t be.  So now, I view it as a process.  I spend each day, “beating” Cowden’s.  Every time I get up.  Every time I go to the doctor.  Every time I fight to get better, and recover.  Every time I explain to my daughter that it is all about HOPE and determination.  This is all part of the process we call “beating” Cowden’s.


So really, what is in a name?

I guess it’s all about perspective – but then again, isn’t everything?

I had plenty of time to think about the whole “name” question today, as Felix, and Meghan and I took a trip to Bethlehem, Pennsylvania.  We accompanied the Moravian Churches on a bus trip to tour Bethlehem, and to take in the Christmas Vespers at Central Moravian Church.

bethlehem 5After a few hours in the bus, we got to tour the town.  We walked up and down Main Street, enjoying the little shops, and a nice dinner.  It was a welcome switch from the normal craziness of doctors, and illnesses, and therapy.  It was better than filling out paperwork related to the car accident.  It was, even through the chilly mist, a nice family day.

bethlehem 1

Although I must admit, as we gathered into the church for the service I still felt a bit odd.  For so many years, and until so recently, I sharply defined myself as a Lutheran.  Now, I was looking up at a Moravian star, marveling at the wonders God can work, and the sometimes unusual ways our prayers can be answered.

moravian star

Personal issues with the Pastor at my home church left me unsettled and in many ways devastated earlier this year.  So, I turned to God and asked for guidance as I looked for a new place to bring my family to worship.  It was a long process, with lots of prayers, but some time in late August, I drove up Victory Blvd.  I made a left and parked.  I went into Castleton Hill Moravian Church on what I thought was a whim.  I later thanked God for sending me the message I had been asking for.  I brought my family the following week, and we have been attending faithfully as a family ever since.

So as I sat tonight in the Moravian Christmas Vespers service, I asked myself, “What’s in a name?”

I know a good deal of Lutheran theology, and I am learning the history of the Moravian church.  There are countless similarities, and a few differences – all of which I like.  Knowing that no place or person is perfect, and everyone has their shortcomings, I like the welcome feeling I get at each worship service.

bethlehem 3

So as we settled into the top row of the balcony of Central Moravian Church, I stopped and prayed.  I asked God for peace from the constant turmoil that seems to surround our lives.  And, as I sat there with my husband and my daughter a deep peace settled on my soul.  Here in this almost 300 year old building, I found peace and comfort in the fact that my family was now enjoying church with me.

bethlehem 4

What’s in a name?  Lutheran, Moravian…. I don’t think God cares.  He looks for a heart that is right and focused.

I couldn’t get through a day, especially not sharing this diagnosis with my daughter, without the firm belief that we are being watched over.