This is my grief.

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There is nobody to share it with because nobody else understands my grief.   Many can empathize because they are going through their own grief.   But your grief is your grief to deal with and while we can all commiserate with each other, you know your grief and I know my grief.

I might be perceived as a grieving widow.  The assumption is she’s fine and is doing well. Nobody understands my grief.

I get up every day (thank you, God) and (mostly) do the things that need to get done but it is a struggle – every single day.  Nobody understands my grief.

Don’t feel sorry for me because this is my grief.  This is my pain and I will gladly suffer grief because I have seen what physical and emotional pain does to a person.  I watched it for 4 years with my sick husband.  Oh how strong and courageous he was … You don’t know courage; so much can be said for what we choose to show the world.  He was never a dramatic person so why bring drama into the mix?  Nobody wants to talk or hear about the downside of cancer.  It’s not death people – death is a welcome end to the misery.

My grief isn’t just the loss of my husband – it is all those 1,506 days from the very first phone call that there was a problem with his health. The tests kept us busy and then the diagnosis – we both died a little that day and the grief began.

Grief is about who was there and who wasn’t there and figuring out in your mind how to forgive those that weren’t.

When you have taken care of someone for so long, and watching the horrors of what the mind and body goes through in a slow, methodical death, you don’t ever get to forget that and over time, it becomes more prominent in your mind than when you were going through it. I am not just talking about physical pain.

I would not expect anyone to understand my grief,  it would be impossible because there was not a single person who lived with that man and intimately saw what I saw. So much was not for public consumption.  Nobody understands my grief.

Have I lost all of my marbles? It’s possible that during those 1,506 days I lost many things. It is now, nearly 14 months post death that I am starting to understand my grief. It is not just the death it is the hours, moments and days in between diagnosis and death compounded by the insurmountable sadness felt at being alone.

I know I have a support system. I have people who care and so many people who are going through something so similar, but completely different.

This is a process, I know.  The many stages of grief described have not been applicable in my case. One could not possibly understand my grief because there was no greater love than the love that we shared together, in sickness and in health. This is my grief.

God Speak

This post may be a little too “religious” for some of my friends, so if you want to scroll by, it won’t hurt my feelings!  You know why?  I’ve been to Easter!

I was given Christian religious instruction growing up … Baptist and then Methodist and a bit of Catholic thrown in.  At eighteen, I was a Catholic convert.  I left the church after my divorce from my children’s father and an ensuing Annulment.  The resultant theory at that time was that my children were bastards.  Not so – they were conceived in love by the love of God.  But the “shroud of shame” felt left me hurt and feeling less than inclusive.   I joined the Lutheran church.  I have never attended any church regularly other than growing up and except when I was Catholic.  Once a Catholic always a Catholic, so they say.  So here I am, my daughter is going through RCIA (The Rite of Christian Initiation of Adults) in the Catholic church so I have joined her on a few occasions and this week, Sunday, Monday and Tuesday (after attending Saturday evening mass with her) I attended a “mission” called the Running the Paschal Mystery given by an amazing man, Dr. Terry Nelson-Johnson.  If you ever have the opportunity to join in on one of his talks, Catholic, Protestant, Muslim or Jewish – do yourself a favor and listen!  Yes, there is a lot of Jesus talk – it is after all a Christian based Mystery – beginning with Holy Thursday.

What I learned during these evenings was mind-boggling.  Each night brought funny, sad and inspirational stories in Terry’s life that related to the “mystery”.  Here I am, sitting in the church, the holiest of all places and Terry is shaking a pom-pom yelling loudly “For God’s Sake” … now in my teachings, you just don’t say that.  It’s wrong, sort of like I am going to hell for saying that.  Well guess what?  For God’s sake, it’s okay!

I wish I could tell you (and even though I have the booklet and CD) everything that Terry relayed to us, but that would not be right.  Suffice to say that I am renewed and thankful and despite the trials that I have endured, I laid them down, just as Jesus did, on Good Friday.  Yes, he laid down his burdens.  All of this happens after having an amazing meal with His friends the night before.  Terry brought us through these days (and what day Holy Saturday is …) as if we were right there, but in modern time!

One may not agree with all the teachings and heck, even the Pope now sees things in modern time … I bet Jesus didn’t agree with a lot that was going on either and he just did the best he could under the circumstances.  So this “Running Paschal Mystery” begins with Jesus running a marathon and stopping and calling us to finish the race for him … brought together with shouts of “Jesus, Jesus, he’s our man …” you are not sure whether to laugh, cry or get up and start running through the pews!  Seriously, that’s how engaging this is!

What Terry does is make parallels of our lives with the days.  Holy Thursday … what is Holy Thursday to you?  Part of me feels my Holy Thursday died on 12-9-14 but then I turn and see my daughter and her fiancée dealing with two blessings of a six and four year-old.  Ahh, this is my Holy Thursday.  Tomorrow Holy Thursday may just be different.  I’m thankful for whatever feast feeds my soul.

Not one among us has ever missed Good Friday.  Good Friday is whatever burden lies within.  Ill health, finances, death, mean-spirited people, judgmental people, brokenness – it is whatever is the opposite of Holy Thursday.  It is a Good Friday when you can lay those crosses we bear down.  I have seen plenty of Good Friday’s in my lifetime and I was able to lay them down at the foot of a beaten up wooden cross.  The affirmation that this is just what Jesus did and there He was, pom-pom in hands saying “Therese, Therese, she’s our woman, if she can’t do it, no-one can.”  And so I did.  It was such a Good Friday!  I let the pain and the heartache of the death of our son (Keith’s oldest son) breathe a new life into me.  I let the loss of my brother so many years ago, give me the boost I needed to lay down the heartache of the death of my sister and I felt their energy give me the energy to lay down my biggest burden, to fully give it to God, the death of my husband.  None of this was done without tears.  Not one bit of any night did I not sob, along with so many others in attendance.

I’ve laid down these burdens and it’s Holy Saturday and I have to wait.  Do I sit vigil and wait for it for God’s sake?  No way. I join-in-community with others and share the good news.  In my faith, yes, Jesus is coming, but He may already be here.  I hear a story of Terry’s mom in her ninety’s and frail and her caretaker is a Muslim woman.  Terry’s mom, a devout Catholic, insisting that her Muslim caregiver pray at her bedside and not out in the hall – and in turn teaching this woman to pray the Rosary.  OH, there is no need for Good Friday in that!

This, my friends is what Christianity means to me.  It is not exclusive, it is inclusive.  It doesn’t make me less of a Christian to believe what I believe, for God’s sake – just believe.

And now, it all comes down to this – Easter.  Easter is the promise of a better tomorrow.  Easter is death with the most glorious of sounds.  Easter is life.  It is new life.  You felt it, you saw it, you tasted it and you broke bread with it.  You gave those burdens to Him.  You waited long enough – it’s Easter, for God’s sake.  Enjoy the new life, you’ve earned it.

Two more things that I took away from “Running the Paschal Mystery”

  1. Have you ever seen the picture of laughing Jesus? First time I saw it on social media, I thought, boy that’s not right.  laughing JesusOne story can change an image in your mind forever.  Imagine I’m begging you, it’s Holy Thursday and Jesus just invited a bunch of his nearest and dearest … why not show Jesus laughing holding a glass of wine!  Eat it!  Drink it!  Enjoy that meal and community with Him!
  1. Despite growing up different religions, we always said the Catholic Grace before a meal: Bless us oh Lord for these thy gifts which we are about to receive, from thy bounty, through Christ our Lord, Amen. My grandkids say: “God is great; God is good, let us thank him for our Food, Amen.”  Same prayer only different.  Terry Nelson-Johnson says grace throughout the day to many circumstances… Bless us oh Lord for my eyesight, every morning when he wakes up, etc., etc. – The lesson in that, for me, the more thankful we are the more thankful we present to the world.  Oh I am thankful!

Bless me oh Lord for my family, for my children and for my burdens which you have taken to give me the most blessed Easter.  I am home, I am home.  Happy Easter!

If you are ever in the Chicago area, look up Dr. Nelson-Johnson and attend one of his “Running the Paschal Mystery” – I guarantee you will not be disappointed.  http://soulplayonline.com/

 

 

 

 

 

Of Love and Fear – The beginning

March 1 2016
It was the second week of November 2010.  Keith was heading into day-surgery to have his port placement.  I needed something other than my earbuds and music, so I quickly made my way to the gift shop while he was being prepped.

I found what I was looking for.  It felt strange to look for hope in an object outside of faith. But there is was – FAITH & HOPE! I think I needed to do something with my hands, something to hold … there was no thought of thumbing through magazines… Who could concentrate on words?

There I sat, my world crumbling, listening to the words of “Nights in Rodanthe” sung by Emmylou Harris.  My mind could not stop going to a bad place.  It was just under two weeks of finding out he had cancer and three days after the diagnosis:peritoneal carcinomatosis – mucinous adenocarcinoma of appendiceal origin.

I was lost, sitting in an open room with others waiting for their loved ones, all by myself in every sense of the word.  The procedure was simple and would not take long to place in his chest.  But there was a waiting period afterward and then he was sent off to x-ray to make sure the port was placed where it needed to be, and that’s when the general surgeon came out to tell me he did well with the placement.  I had been in my own little world and must have looked and sounded as if I had just heard the news my husband succumbed to the disease.   I looked up when I heard, “Mrs. Surges” and that was it.  I lost it.  I sobbed, right then and there.  This procedure was nothing compared to what Keith would endure in the future.  The surgeon looked at me as I was trying to catch my breath and apologize for my emotions, “This is scary, serious stuff – I know.”  From that day forward, I never apologized for my emotions (unless I couldn’t get the words out, more an apology for the delay … you know I’ve spoken before about the sobbing snot-cry … not pretty).

I so needed to find a way to put my game-face on for Keith.  I did, and would do again, anything for that man.  Chemo was going to begin in two days.  Our lives forever changed by the word cancer, our hearts full of love for each other and the thought of how scary and serious this “stuff” was, brought out a fearlessness like I had never known.  I could do whatever it took to the save my husband.  In the end, I have no doubt he was saved from the cancer and the unfairness of it all.

I’m not the same person I was in November 2010 – I am a better person.  I have always been a kind person and have always been a caregiver.  I don’t hold on to metal pieces anymore.  I still listen to Nights in Rodanthe and cry.  It’s a musical score in a movie by the same name about love and loss and how to pick up the pieces in the face of tragedy I am living my life as Keith would have me live it; without fanfare, without guilt and without feeling the need to say I’m sorry for my emotions.  I think I use my emotions productively.  I hold onto the beautiful memories I had with Keith secure in the knowledge that I truly did help save him.

The world just had Rare Disease Day on February 29th.  It is sad that Keith didn’t get to lend his own voice but I believe my voice is a combination of both.