Friday, April 08, 2016

The glue that holds us together

Just three days ago I was recapping our St. Louis visit with her via text message.  I knew she understood the anxiety that returning to St. Louis brought.  Although the "city" has brought my husband health, it has also seen some really dark times, and I have spent the loneliest months of my life there.  And there is always a question of how long his health will last.  And she understands.

Her husband's visit was the very next day.

Although we never met during Steven's first transplant, I found out that they were on the transplant floor the same time as we were.  They lived in the same row of duplexes post transplant. And they visited the same doctor's office back in Springfield once they returned home.  And I was oblivious. 

But she wasn't. 

Because we had another mutual friend on the floor, she had found my blog, and through it, found me, and later the courage to introduce herself.  I immediately felt like I had known her my whole life and mourned the time we had lost after the first transplant.  We needed each other then so badly...and we didn't even know it.

Tuesday, on the way home, she shared that she still, a year and five months out, got that sick feeling when returning to "the Lou", and she was fighting it then.  The anxiety and the sickness was taking hold, and it was such an isolating feeling.

I told her that there were days, that, after what I have been through, that I feel so fierce and so strong that I think I can take on the world...and then seconds later I feel as if I could shatter into a million pieces and I wonder if anyone would notice and care enough to try and pick them up and glue them back together.

And she gets it.

It isn't a plea for sympathy.  It's so far past that.  Sympathy isn't what we are after and in fact, it turns my stomach.  I don't want soft spoken "bless your hearts..."  I don't want averted eyes and pats on the back.  I don't want, "I don't know how you do its", because if we are being honest, I don't know how I do either. 

If these are your responses to people like me, know that I am not judging you, because I've been you.  The person that doesn't know what to say, or what to do.  The person who wonders if they should even acknowledge the struggle, or when they should stop.  The person who wonders if it is still a struggle, or if the person just somehow gets used to their new life.

They don't.  I will answer that for you.

As long as there is loss, an emptiness, a cancer diagnosis, a major life altering event that has forever changed their life, they are not used it.  "Used to it" implies that it isn't noticed any longer.  I could be wrong, but I don't believe that this ever happens.  It may become easier, but I don't think you ever get used to your life being so devastatingly different.  It may not hit you like a tidal wave, but you still feel the impact and the sting.


 I can not ever remember once liking my physical appearance.  Never.  I always wanted to be a petite, dainty, small thing that had the masculine man that took care of her.  There were multiple problems with this picture I had painted in my head and my physical stature was just one.

Mentally I am not one that likes to just sit back and let someone take care of me.  This is an issue.  (At this moment I am wanting to bang my head on the desk and cry, "Why?! Why?! You were such an idiot!" ...)  However, even when Steven was able, I wouldn't let him.  I took care of things.  It's what I did.  He was busy working his tail off and so, when I wasn't at work, I was working at home too.  I never just sat around. 

I reflected on this many times as I found myself throwing wood into our wood stove this past winter. Sometimes in frustration I would kick the frozen wood that was stuck together in the pile, and I would find myself laughing. It was during these times when I was outside, doing things many women wouldn't/couldn't do, until they had no choice, I thought about how growing up I had already had these expectations placed on me.  I milked cows for my dad, got up wood, and helped haul hay.  I did many things that boys did because my dad didn't have boys.  It wasn't something I was necessarily proud of, but I wasn't ashamed either.  It was something that just was and I wanted to be something else.

But God had different plans.

God knew I needed to be strong.  God knew I needed to be headstrong and want to take care of things myself.  God knew that I would have to be ok with getting in and getting dirty.  God knew that although I thought I wanted to be dainty, and petite and the little housewife that was too feminine to ever be dirty...I wasn't going to be cut from that cloth and that wasn't the life I was going to be led to lead.

So...I am still strong. 

It is hard for me to stop there and not to go on and say something negative about my body, or my weight, or my appearance.  But I will stop there.  And I will be kind, for once, to the body that has allowed me to care for my family.  The body that has allowed me to work hard, and be tough, and endure months of sleepless nights lying on a hospital cot.  A body that has woke up to help her husband in the middle of the night, and walked down a hospital hallway to sit alone in a waiting room and look silently out the window.  A body that has sorted medicine and sorted socks.  A body that hugs her husband, her kids, her friends and anyone that whose face mirrors the sadness I have seen in my own. 

A body that has refused to give up even when my mind was so very tired, so very sad, so very anxious, and just wished that it would.

A body that refused to give up because it is strong.


My friend and her husband went to their appointment on Wednesday, just one day after Steven's and her text that day made me sick to my stomach.  I've been sick ever since.

Her husband's labs revealed an issue and he has since been readmitted to Barnes.  It is a very real possibility that her husband, now one year and five months post transplant, has relapsed.  He is having biopsies today.

My heart is broken.  I didn't sleep well last night as I thought about them in their hospital room and I knew what they were going through. Today they have been on my mind all day and when I talk about them I am fighting back tears. I have been there. In some ways, I am there still.

We were only five months post transplant when Steven relapsed and they are one year and five months!  My heart feels the icy cold of anxiety creep in and instead, this time, gets angry.  My heart screams out, "When can I finally get some peace?!  When can I rest easy?  When can I sleep through the night without the dreaded fear creeping up?!"

I honestly don't know if I will ever rest again. 

I know that the doctor said that three to five years seems to be the point when you can start to relax.  If we make it that far, I am afraid I will have forgotten what relaxing is by then.  I'm not sure I will know how to go back.  And I have too many friends that I have added into my heart and I am now carrying them with me.  None of us can relax until we all make it through.  I don't think I will ever rest again.

However, I do know this: 

Lori, I am not the only strong one. 

You are incredibly strong.  You are a force to be reckoned with. 

You can do this.

You are not alone.  Not even close.

We love you. God loves you.

If the time comes and you feel the need to shatter, into pieces, please rest assured, I will come, and I will bring the glue.  You will, once again, be strong.  I promise.

Prayers my friend.

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