Please take a few minutes to enjoy Sarah Kay:

We live in a small house in a nice community.  It’s a humble place.  Two bedrooms, two baths and a small front room for my office.  A living room plus a kitchen with an eating area that we use as an extension for a kitchen lacking in counter space.  We eat our meals sitting in front of the TV.  Nothing fancy.  Life is simple on our house.  The complexity of living with chronic Lyme reduces everything else to a minimum.

The place is cluttered with stuff we don’t have the energy to deal with.  A couple piles that need to make it to the car and then Goodwill.  The glass bottles that need to go to the recycling bin.  Books nobody reads that should be donated to the library.  Dirty dishes that we were too tired to clean last night.  The kitchen floor needs scrubbing.  We live in two rooms, the office where the computers reside and the living room where Cee has to spend a lot of her time.  That’s where she gets her legs up to cope with the swelling caused by Lyme’s Bartonella infection.  It’s the place we end up when we don’t have any more energy left.

Dealing with Cee’s illness has taken the life out of both of us for many years now.  It’s been a struggle to find anything worth living for at times.  Connecting with a Lyme literate doctor who is driven to discover therapies that work has made a huge difference for us.  It’s giving us our life back.

You have to learn to let go.  Let go of the notion of a clean house and an exciting life.  Let go of expectations of your partner.  Let go of expectations of yourself.  Live in the present moment and do as much as you can to keep life as normal as you can.  But let go of trivial stuff like a clean kitchen.  It can wait for a better day.  Learn to focus on just getting through today.  It will get better.  The meds will kick in.  You’ll have your partner back to share a fuller life.  Just take it one step at a time and ignore the silliness of the way “normal” people live.  Life will get better.

What is life like in your house?   How do you cope with living Lyme?

(Disclaimer:  I don’t live in a Lyme body.  I just keep one company all the time.)

I watch Cee struggling with this disease and all the challenges she faces physically.  I help with those as much as I can.  But what really frustrates me is when I can’t talk her down out of all of her guilt for having Lyme.  It causes her so much pain, and I can’t do anything about it.

Emotional pain can’t be cured by logic, and Lyme comes with an incredible amount of emotional pain.  You are the cause of a drastic change in lifestyle, are a financial burden, and can’t be there for the ones you love.  Lyme becomes you world, because controlling your Lyme is your survival.  All of that brings tremendous guilt.

It’s not your fault.

I keep telling Cee it’s not her fault.  She didn’t go running into a hot bed of ticks with a Bite Me sign on her.  She didn’t plan to be in pain for years and almost die just for the fun of it.  It happened.  It’s life.  I love her, and I’m committed to sharing this journey with her, no matter what.

Does that ease the guilt?  No.  In fact, it made it worse for a long time, I think.  There would be evenings where she would burst into tears and threaten to leave me so she wouldn’t be a burden any more.  She’d cry that she was holding me back from life.

There were times, and I’m being very honest here, when we both discussed suicide… for her, as an end to the suffering and fear, and for me because I couldn’t live without her.  There were times when this illness brought both of us to the brink of oblivion.

It’s not your fault.  Don’t judge.

I’ve been studying something called Emotional Brain Training (EBT) to help me cope with all of this.  (More about that in another post.)  I’ve learned that when Cee gets into a guilty and self-blaming mode, the best thing I can do for her, the only thing I can do for her, is to just stay calm and repeat in a soft voice, “It’s not your fault.  Don’t judge yourself.  Don’t judge.  Don’t judge.”  I keep repeating that mantra until she calms down.

Don’t judge yourself.  It’s not your fault.  It will pass.  Don’t judge.

She tells me that when I first started saying this she just wanted to fight me and argue about it.  I just kept my cool and didn’t react.  I just kept on repeating my mantra slowly, quietly, until she calmed down.   Now I do it any time I can feel her starting to beat herself up over things.  It’s helped her cope better with her illness.  The important thing about Lyme is to control your emotional state. Getting emotional about negative things, like guilt and self-blame, creates chemical changes in the body that aggravate the Lyme.  If you can help your Lymie by talking them down out of that destructive state of guilt and blame, you will be helping them control their disease.

• Does your loved one take on a lot of guilt?  How do you react to that?  How do you feel about it?
  

I am one of those keeping vigil. 
Each step comes in slow motion.  I hate this walk and the questions it brings.  Will she still be there, clinging to life, tied to so many machines and tubes?  Or will I round the corner to see her  door open, room empty, her body in the morgue waiting for me to dispose of it?  Will she have slipped away, alone, desperate, unaccompanied into that dark mystery of death we all fear so much?   What if she gave up and left while I had gone home for a troubled sleep and a change of clothes?  What if, during my long drive back to the hospital,  they tried to call me, to tell me to hurry, that there wasn’t anything more they could do and it was time to say goodbye, but they couldn’t reach me and she died alone?  Would she know that I didn’t want it that way?  That I wanted one more chance to tell her that I loved her and that my life would end when she left?   That I tried the very best I could to keep her alive?

My footsteps echo in the deserted hallway.  Left turn, five steps, right turn, thirty steps.  Just one more left turn and I would have my answer.  My head is screaming inside.  I can’t breathe.  No, no, turn back the clock.  This can’t be real.  This isn’t happening to us.  Please let her be alive.  Give us one more day together.  Just one more day.  Please?

Left turn.  For today, the answer is….

(This is one of a series of vignettes I’m writing about Cee’s first hospitalization.   Survived multiple organ failure, was in a coma or forty days, and was kept live on a ventilator.  The doctors couldn’t figure out what had caused her collapse, and they couldn’t explain how she lived through it.  She wouldn’t be diagnosed with Lyme for eight more years.)

“How do you get through this?”

Harry said, ever so calmly, “You just do.  You just do.”
Those were not reassuring words.  Harry and I were in the hospital cafeteria, trying to eat.  Eating isn’t easy when you spend your days sitting in the Intensive Care Unit beside the bed of your mate, waiting for death to come, praying that it doesn’t.

Harry’s wife was in the room next to ours.  That’s how we met.  He was old enough to be my father.  His first wife had died of breast cancer.  Now his second wife was on a ventilator, with fate uncertain.  He had been through this before.  I was hoping his experience would have brought some wisdom, some secret of how to dull the pain, how to diminish the terror I was living with every hour of every day. But instead I get, “You just do”, like some perverted ad for running shoes.

Harry was a man of the cloth, a retired minister.  I had expected some words about God and prayer and Jesus and miracles and faith making you whole.  I had expected Bible verses.  Something.  Anything.  Just a little bit of heaven to hold onto.   “You just do.”

“You just do.”

Those turned out to be the wisest words I have ever heard.

(This is one of a series of vignettes I’m writing about Cee’s first hospitalization.   Survived multiple organ failure, was in a coma or forty days, and was kept live on a ventilator.  The doctors couldn’t figure out what had caused her collapse, and they couldn’t explain how she lived through it.  She wouldn’t be diagnosed with Lyme for eight more years.)