Tuesday, May 6, 2014

Having lupus, Part 3: How lupus made me a better wife






I've got your back, Rose.
-Johnie







I have commitment issues.

I had a moment of panic on my wedding day.  I was afraid maybe Johnie wasn't the one.  I was afraid I didn't know him well enough.  I was afraid he was just putting on a show, and would get me to Kansas and then make my life miserable.

 The only way I could make it down the aisle that day was to repeat these words in my mind: "You can get a divorce.  It's okay.  If it doesn't work out, you can leave.  You don't have to stay."

Not the most romantic or reassuring thing for my husband to know.

I mean, I believed in the sanctity of marriage in theory.  But when I was being completely honest, I told Johnie I didn't have enough confidence in myself to be sure I'd stick around if things got bad.

When things get hard or uncomfortable, I look for a way out.  Why would I be any different in my marriage?  And it doesn't help matters that I tend to be a loner and independent to a fault.

Johnie clearly took note of my warnings in one of his classic attempts to be romantic a few years after our vows: "Amy, I really want to make you happy.  Not only because I love you, but because I really don't want to have to find another wife."

At least he realized I was serious.

Of course I wasn't wanting to stay in a marriage that involved abuse or cheating or a husband who just didn't respect or value me appropriately.  But I also wondered whether or not I'd be able to stick by Johnie if marriage became hard in a way that wasn't necessarily his fault.  Like if he got sick or injured or lost his job.

I just saw wives who labored through husbands' paralysis, or terminal illness, or dementia.  I wondered if I would have their strength.  I was afraid I wouldn't.

Johnie has made my life better in so many ways.  I'll be honest: That's a big reason why I chose to marry, and him specifically.  (It didn't hurt that he is also H.O.T.)

What if he was no longer able to provide financially?  What if I had to care for all his needs around the clock: feed him, bathe him, change him?  What if we could no longer travel together, or go out together, or laugh together?  What if he lost his personality or his memory?  What if marriage became more of a burden than a blessing, would I actually stay?  I didn't know.

But for all of my doubts, Johnie never had any.  As reluctant as I was to pledge 'til death do us part, Johnie was sure it was me and only me, no matter what.  His loyalty and devotion was deep and sure from even before he put that ring on my finger.

And in all my worries about him one day becoming a burden to me, I never really gave much thought to me becoming a burden to him. 

That changed when I faced lupus.

I was no longer the wife he married.  My healthcare cost more, while my earning potential decreased.  The likelihood that I would have more physical daily needs he would have to meet skyrocketed, while my ability to keep up my part of our household chores plummeted.  If I can get pregnant with his child (because we have never "tried" we aren't sure whether or not lupus has affected my fertility), the pregnancy would automatically be high risk.  And any children we have through biology or foster care or adoption would require more care from him on my unpredictable down days.  My weight fluctuates uncontrollably.  My hair falls out and breaks off.  My face has big, ugly spots on it 90% of the time.  There are even some days I don't feel like cracking a joke.

And who knows what the future holds for him and me.

Lupus made me less of a partner and more of a liability.

But none of that mattered to Johnie.  I apologized for all the things he was losing with my diagnosis.  He didn't accept it because he said it wasn't needed.  And as we laid in bed that night after we got the news, he held me and wiped away my tears and reassured me.

"You know I'm here for you.  I'll do whatever I can for you to help.  Just let me know...  Whatever it takes.  I've got your back, Rose."

It was a weight lifted off my shoulders and I was so thankful.  He was so fully devoted to me even when I wasn't to him.  And now even when I didn't bring nearly as much to the table, his commitment remained in a way I wasn't sure mine would have.

That changed me.

How much harder my diagnosis would have been if Johnie had treated our marriage the way I always had.

I vowed then to give myself to Johnie with reckless abandon.  For my devotion to him to match his to me: unwavering and never-ending.  No matter what.

I confessed to Johnie one night shortly after that I hadn't been the wife to him I should have been.  That it was wrong of me to withhold my full devotion.  And I pledged to him that -- though nearly seven years late -- I was completely committed to him in a way I should have been from the beginning.

I worried it would be too little, too late.  But I don't think it was.

I read somewhere that more than half of all marriages end less than five years after a lupus diagnosis.  That statistic frightened me at first, but I don't worry about it anymore.

I don't have as much to offer Johnie as I once did, but I offer it fully and freely.  And in that way, lupus has made our marriage even stronger, even better, than it already was.


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This post is part of a series on how lupus has affected me.

Click on the links below to read more:

Part 1: Introduction, The horrific mystery disease

Part 2: The bad times

Part 4: A practice of patience

Part 5: More on the pit

Part 6: Exhaustion

Part 7: Saying no

My diagnosis

My herbalist and the treatment option I am choosing right now

My recent lifestyle changes

To learn more about lupus, you may visit the Lupus Foundation of America.