grieving without community…

I read a blog that was written after a very beloved woman left her family and friends too early due to breast cancer.  It was titled Grieving in Community and the blog is called Mundane Faithfulness.  It was about what it is like to grieve with others through loss.  How comfort and healing come with sharing laughter and tears together after a loved one has died.

It is an opportunity that I have sorely missed.

Most of the time grieving is done with family and close friends.  But for some of us grieving happens alone.  Grieving happens in places that are so inappropriate, like the gym or the church bathroom.  Grieving takes place watching a commercial on t.v. or walking down the aisle in Walmart.

It happens in those places because grief must be let out.  It must be poured out while sitting over coffee or tea laughing and crying hysterically. If it isn’t, grief takes it upon itself to seep out in places you don’t think it belongs.

You can have family and friends and not have  a shared community of a love one who has died.  It makes the grieving process a lonely thing to walk through.

There were times after Sams death that I felt as if he may have been a figment of my imagination.  I knew that he wasn’t, but he may as well have been in that moment.  It is a hard thing to grieve someone no one else ever knew.

I have family and I love them, and they love me.  But we are not a community.  We are not cohesive.  We are fractured, some of us talk, some of us don’t.  Some of us see each other, some of us don’t.  None of us interact in each others lives enough to have a community to grieve with if one of us dies.

Like with Harriet.  I grieve with my foster sister, I talk to my foster brother occasionally, but I didn’t know her friends and she didn’t know mine.  And the rest of my family, well, we don’t share that kind of deep hurt.

It was the same when Sam died and the same when my father died.  Although with my dad fortunately  there wasn’t much to grieve.

I think walking these deaths alone has made the grieving process much longer.  More chronic if you will,  It has made it harder to process and to let go.

I could have attended some kind of grief support groups over the years.  But I didn’t need that, I needed people who knew my loved ones like I did.  I needed someone to remember getting our butts handed to us by Harriet, I needed someone to reminisce about the heart of a man named Sam.  I needed a community of people to walk through all this mess.

Not that my friends and loved ones have not loved me through and been supportive of me.  Not that they haven’t hugged and held and reached out to me.  They have.  My friends and my family absolutely love me and are awesome to me.  But our lives are so separate.

And it is a seperateness that I cannot fix.  And I hate it.  I hate grieving alone.  I hate missing alone.  I hate crying alone and laughing alone.  Because whether you are sobbing or cackling hysterically in the bathroom at church all by yourself people kind of look at you funny……if there are two of you at least people think you are laughing at a bad joke….or crying at it because it was so stupid.

If I were being fake I would start in on the “So lesson learned I am hopping out there to make some community”.  Or “now is the time to build that community and let this be a lesson to me for next time”.

But really all I wanted to do was say that grieving alone is a reality and it is hard and it sucks.

I am not trying to figure out answers to the great dilemma. I am just pointing out that there is a dilemma.  and to ask you that if you know someone who is grieving alone please be patient with them.  Please let them take to long to get over it.  Let them hang on to their grief, let them muddle their way through.  Sometimes for some of us, all we have is the grief to proove that someone once loved us.




Can’t go over it….

It’s a book called We’re Going On A Bear Hunt. it’s about a family going on a bear hunt and encountering all kinds of obstacles, like tall grass, deep rivers, sticky mud, blowing snowstorms, dark forests and narrow and dark caves.

It’s amazing how so many times real adult life relates to a children’s story.  Or maybe it is just me and I still have growing up to do.

Benign Joint Hypermobility Syndrome, EDS type 111, EDS Hypermobility. They are all the same thing but since my diagnosis this is how many times the name has changed.

Here is a link to learn more about Ehlers Danlos Syndrom (EDS)

What is EDS?

I was diagnosed sometime in 2009 or 10.  At the time I had thought I had finally found a reason for all of my symptoms.  But neither the Rheumatologist nor my general doc seemed super concerned nor did they offer much info.

So I went on a hunt to find my own info.  What I found though was not much.  Much the info I found was from other countries. American medicine did not seem to acknowledge the depth of the issue of my type of disorder .

So if the medical community ignored it, it must not be very real.  Which allowed me to go into denial that it was even a real “thing” and I could keep searching for a cure.   Denial really only leads to further frustration, further anger with God for not helping me figure out how to make myself better.

The other night after weeks of hip pain I decided to do some more research to see if possibly the EDS 3 could be the cause of the problem.  This time around I found so much new information.    I found lists and lists of symptoms.  My symptoms.  I found stories and stories that were my stories.   I found the end of my denial.

All of my adult life that I remember is filled with pain and fatigue.  For the rest of my life that is what I will feel.  There aren’t any cures.  There is no diet or pill or exercise that will change the fact that the collagen in my body is somehow defective.

I know I have said I have accepted this fact before, really I haven’t.  Really in the back of my mind I kept looking, searching, praying, hoping and begging for it to be different.

But reading my life in the stories of others have changed everything for me.  I can do things to help support my body, I need to lose weight. I can strengthen my muscles to support my joints better.  That’s about it.

Headaches from tension to migraines a given.  Mind numbing fatigue, all over pain.  Arthritis, those are a certainty for me. It hurts to walk, it hurts to not walk.  It hurts to work out and it hurts to not workout.  I am damned when I do and damned when I don’t.  But still I find myself grateful.  There are six types of EDS and within each type are differing levels of severity.  I think I am luckier than most.  If you read about what others have to deal with, I am on the mild side.  Thank you Lord.

And that book keeps going through my head  “Can’t go over it, Can’t go under it, Oh no! We’ve got to go through it!”

I just have to go through it.

I so often think about what I could do, what I want to do, what I should do, what I WOULD do if this thing didn’t plague my life.  Some days I feel like I am grieving a life that I think I might have had if it weren’t for fatigue and pain sucking all the motivation out of me.

We as humans spend our lives trying to figure out ways to get around things.  To get over and under issues so that we don’t have to go through the hard stuff.  In reality we really only make it much harder on ourselves.  The journey over the mountain is dangerous and draining, and it takes much longer.  The journey under the mountain often takes us deeper into our crap and our tunnels always collapse in on us. In trying to go around the mountain we usually end up lost and off of the path frantically searching for a way back or staying hopelessly lost. That is me, staying hopelessly lost until finally I decide “Oh no, I’ve got to go through it!”

Denial has held me in bondage, acceptance of truth will set me free.  Time to turn my energy in a more positive direction.  But if I am being honest giving up on the idea of a cure is heartbreaking to me.  I hate giving up and I hate giving in.  I hate admitting failure.  I hate not being able to control and fix this.  I hate feeling weak and less than.

But the truth is that I am tired of beating my head against a brick wall.  This EDS thing takes enough out of me and I really don’t need to give it more of me.  as the Borg from Star Trek say….resistance is futile.  And in the end it is harmful.

It is time to let God fight my battles for me and for me to trust Him in this.