An Honest Answer

I was at dinner recently with a small group of friends.  Someone asked me how my daughter was doing.  There are times this question makes me want to scream.  This was one of those times.   I didn’t want to say Gillian was “fine” because, well, she’s not.   

No one wants to give an honest answer to this question – how are you – even when the question is asked out of genuine concern.  There is an unspoken code of social conduct that deems any response other than “fine” is not acceptable.  Especially at dinner among friends.  But regardless of where or when someone asks this question, I’m uncomfortable with the answer.  Why? 

Because people who suffer with chronic autoimmune diseases are simply not in the same category as those who suffer from colds, flu or cancer.  There is no cure for Lupus.  If you’re lucky you might go into remission.  But Lupus will never go away.  They can’t cut it out of your body or destroy it with radiation or dissolve it in a cocktail of chemo drugs.

So, when my friend asked how Gillian was I said what I always say (if my daughter is not in the hospital).  I said, “she’s fine.” 

My response was dishonest.  Cowardly.  And disrespectful to my daughter. 

Well, I’d like to honor my daughter.  I’d like to start a trend.   When someone asks me how Gillian is I will give an honest answer.  I’ll start at the top and work my way down.  I’ll say, she’s alive.  She’s not in the hospital.  She’s not (at least I don’t think she is) at this moment in horrible pain (but she could be and she’s just not telling anyone).  Her disease and her pain (?) is under management.    

Why shouldn’t we be honest when someone asks us how we are whether we suffer from a chronic illness or not?  What’s the formula for a response?  You perform a quick analysis; emotional, physical, mental state…check.  Fine. 

Would you tell the truth if you weren’t fine?  Would you let people know how you really feel?  Probably not.

Why not an honest answer?

For Gillian…

This blog is for my daughter.  She has Lupus and, yes, Lupus has her.  It’s not a happy relationship.  Not by a long shot.

Gillian is going on year ten with this disease.  It doesn’t seem to quit.  I guess it doesn’t really know when to quit.  There is a very short list of disease-slowing events which generally involve tricking one’s body into believing that it doesn’t have an autoimmune disease.  These tricks come in pill form or IV.  And as the saying goes…the cure is more times than not…worse than the disease. 

My daughter is going on her sixth year of marriage.  She has an  adorable four year old son.  She’s just finished a Masters degree in Microbiology and is currently in the process of applying to graduate schools in order to earn a doctorate.  Sounds like a good life.  And it is.

And then there are the events that didn’t make it into this years’ family Christmas card.  For example, last year she was hospitalized five separate times.  She was in ICU twice, intubated both times.  She’s had meningitis twice.  And, by day 15 of an 18 day hospital stay in October (the 5th stay of 2011) the frustrated team of medical professionals charged with treating my daughter blamed her, yes I said blamed her, for her illness.  Outrageous.  But through it all she’s always looking up.  She’s always moving forward because, frankly, the alternative is unacceptable.   

I’ll save the problems she has with her in-laws for later.  I might need a separate blog for that.