Redefining Normal


Life is not a static experience.  Change is inevitable and part of the human condition.  If we’re lucky, our lives are enriched with events and experiences that give us the opportunity to learn, love, and live.  We have  children.  We have friends and lovers.  We work and go to school.  We get married and divorced.  Whether we’re rich, poor, young or old, we develop life patterns that we call “normal”  …. the events in life that are, for the most part, typical and expected.

I had all those things in my life.  School, family, husband, child, job, money, divorce, no money, aging parents, bills, sunny beaches, friends, music.  Then in 1992, normal changed.   And believe me, having a chronic incurable illness was certainly not my definition of normal.

Lupus forces me to constantly re-define normal all the time instead of once in a while.

So while balancing the constant changes in our lives, we try to manage our disease, too.  And if our disease does not respond to traditional or alternative therapies, most of us try to find inner peace and acceptance.  Many of us can’t.  Occasionally luck and divine intervention plays a part in remission or healing. Regardless of all the obstacles and limitations, normal constantly changes.  I honestly never know day to day if I’ll feel well.  I may wake up feeling physically fine … or not.  I may be able to run down the stairs, or have to hold on to the railings one step at a time.  I may be exhausted at lunchtime and have to force myself at work to accomplish tasks but sometimes have the energy to sail through day.  I might feel strong enough to run errands after work but often can’t get out of a chair.  It’s a miracle I have any friends left because I frequently have to cancel get-togethers or parties. I’ve learned to lower my expectations.

Lupus often flares up with little or no warning. It’s incideous.  Just like cancer, diabetes, mental illness, AIDS and epilepsy (to name a few), lupus worms itself into our bodies and attacks.  So we fight.  We take medication and see doctors.  We seek inspiration and courage.  We pray for miracles.

We re-define normal every day, every month, and every year of our life.  It’s not fun.

This holiday weekend I had the good fortune to experience what I used to call “normal.”  I usually refer to stuff like this as BL (before lupus).  I spent Saturday with a dear friend.  We took a long drive along the river road between Missouri and Illinois, enjoying the boats on the water and the beautiful white cliffs on the Illinois side.  We shopped, had lunch, and found a favorite little “produce ranch” on the riverbank that sells the best home made pies in the Midwest.  The following day I went to church and sung with a choir I’ve been in for over 20 years.  After that, a few of us went out for brunch.  And after that I spent a lazy afternoon with my best friend and her mom.  We cooked a traditional St. Louis Labor Day BBQ : pork steaks with Mauls BBQ Sauce.  We drank wine and laughed a lot.  On Monday, I met up with my 2 brothers and other family members for dinner.  It was wonderful.  And I didn’t take any of it for granted.  I felt like I had lupus bonus points!

I was grateful this weekend for the gift of all those experiences.  Usually, I don’t have enough stamina.  Usually, I have too much joint pain, or a headache, vertigo, and the jitters that accompany prednisone.  Usually, I’m just too tired, because doing laundry, cleaning the house and shopping for groceries are enormous tasks that take all the wind out of my sails.

One day at a time?  That works for me!


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