The Simple Life

My wife suffered from a long-term illness, Cystic Fibrosis.  When I say “long-term”, what I actually mean is “life-long”.  There wasn’t a day that I knew her where she didn’t have some sort of symptom or complication directly due to her condition.  Even after her transplant, every day was filled with special medications, dietary and activity concerns, and the constant knowledge that the bottom could drop out at any time.


As blunt and morbid as it may seem, her death brought closure.  It brought a bit of simplicity to everyday life.  Make no mistake, I would much rather have her here, complexities or not, but that is a separate issue in my mind.

Pre-transplant, Megan would start her day with a cough.  Not a dry it’s-winter-so-the-house-is-dry cough, but a deep cough from her chest.  I was almost always awake and moving before her, so this cough, heard from downstairs, would subconsciously signal to me that I needed to make sure the bathroom was unoccupied and a drink was at hand.  

 

She would slowly shuffle down the stairs, still clearing her throat, and enter our tiny bathroom.  She would assume her crouched position in front of our toilet, and begin her coughing regimen.  This would last upwards of 30 minutes, usually culminating in her getting sick to her stomach.  I would check on her every few minutes, and begin getting her aerosol treatments ready for her in the living room.

 

She would shuffle out of the bathroom, eyes watering and breathing heavily, and take her seat on the couch.  Another 30 minutes or so were spent breathing in a mixture of chemicals designed to first open her airways, and then deliver antifungal and antibacterial medicines to her lungs.  There would be some more coughing during this procedure, perhaps with another trip to the bathroom, while I continued to get ready for work.

 

To her credit, on most days, she would also make sure Shelby got to school on time.  She would wake up early to start her regimen, because we didn’t have much of a choice.  She’d often drive to the school in her pajamas just to get her there, come back home, and lie back down for a nap.  Within two hours of waking up, she was so exhausted that she had to sleep.  She pushed herself to her physical limits to make sure Shelby was raised as “normal” as possible.  

 

I’d check on her periodically throughout the day via text.  More often than not, I wouldn’t get a response for an hour or so, after a nap, usually stating that she was doing OK.  In this sense, “OK” meant that she hadn’t coughed up blood or created another hernia.  “OK” meant that she had successfully picked up Shelby from school, and didn’t have to take another nap until I got home that night.  It meant that she was able to eat more than a few nuggets of food without struggling to breathe.

 

“OK” meant that she may be able to go another week without being admitted to the hospital for 30 days.

 

I’d arrive home in the evening, and depending on how her day went, she or I would make dinner.  We’d retire to the couch for awhile or play with Shelby, until it was her bedtime.  On good days, Megan would walk upstairs to tuck her in.  About half the time, I would take her up after Megan told her goodnight from the couch and begin another round of her aerosol treatments.  

 

This was our normal when Megan was NOT admitted to the hospital..  Her inpatient stays brought an entirely new level of complexities, because not only was I a single father during those times (albeit with grandparents’ help), but I also had to balance visiting Megan and hour away.  After a decade of this, it wasn’t complex anymore.  It was going through the motions, without question or analytical thought.  I never once stood back and thought “Wow, I really do a lot for this woman” or “She owes me”.  

 

I still don’t feel that way.  Megan owed me nothing.  I loved her, and all I asked in return was the same.  

 

In my new chapter, with Sarah and a quickly maturing Shelby I now have a comparison to those days.  Sarah isn’t sick.  Shelby isn’t an infant.  I don’t worry about making enough to pay bills and start a fledgling family.  There isn’t a need to figure out how I’m going to get to work AND drive 45 minutes to Cleveland to visit my wife, all while making sure Shelby is home before bedtime.  I’m not a kid anymore...I’m well established in my career, and I don’t need for anything.    

 

Life has become excruciatingly simple.  I had become so institutionalized by a decade of illness that I struggle to know what to do with myself given seven days without some sort of issue arising.  I almost feel useless if nobody gets sick or needs a hand with something.  We talk so much of missing just sitting on the couch with those we’ve lost...but what if one’s normal WAS missing sitting on the couch with them?  What if normal WAS carrying them up the stairs at night or driving them to the hospital every 30 days?  I became an almost-widower twice a year in the beginning of our relationship, and near the end, it was every other month.  

 

Becoming an actual widower has only served to simplify things.  To be brutally honest, the everyday life part is easier without Megan’s illness.  


And I’m terrified of recognizing that fact.


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  • commented 2016-03-08 15:34:18 -0800
    Mike,

    My long term girlfriend (32 years) was a type 2 diabetic who, long story short, over several years and especially the last 2 1/2 suffered 5 heart attacks, both legs amputated, a stroke, had both kidneys fail and had to be a dialysis patient for her last 30 months. In that time we had to abandon our house due to delayed issues from Superstorm Sandy, became essentially homeless for three weeks and oh yeah, for a year after her illness got real, I was unemployed.

    I was preparing to become at least a partial caregiver to a double amputee diabetic dialysis patient who was a heart and stroke risk. She couldnt re-enter our house because she couldn’t climb the stairs to get in and I was in the process of getting us a ramp donated so she could come home, something she hadn’t done for her last 23 months.

    Would I do it again? YES! Without question.
  • commented 2016-03-07 23:41:30 -0800
    Mike thank you for sharing this. I have struggled with similar thoughts. Without going into a lot of detail, my husband suffered from a terrible disease that made everyday life chaotic and at times a downright nightmare. Don’t get me wrong, I would do it all again in an instant if it meant even one more day with him. It helps to remind myself that somewhere he is now free. Free from his disease, free to just enjoy whatever adventure he’s on. It’s not that I’m happier or better off – just living differently now, and it doesn’t change a thing about our story or our love.