Sunday, September 26, 2004

Living a Double Life Part 2

I have choices to make.

Spend the day grieving over every single loss, or take the leap of faith that God will place my feet on a new path.

I re-invent myself, I find those childhood desires that got lost in the business of growing up and being “normal”. I color, I paint, I write all the time like the little girl I used to be…hoarding my journals in an old trunk, filled to brimming with poems, musings, drawings, and the embarrassing chatter of youth.

I don’t worry about fashion anymore. I wear whatever the heck I want to. I don’t care what others think about my appearance, just as long as I am comfortable, happy and still beautiful to my Hubby.

Those outings out into the Real World are when my personal “collisions” occur. All the social etiquette that is required.

“How are you?”

“Oh, just fine and dandy! And you?”

I listen to someone’s complaints of a recent bout with the flu.

They got better.

I wonder what that must be like to feel better.

I realize I am staring. Oops.

That happens a lot. I am not out of the house much and when I do get out…I just LOVE to look at people.

The sales clerk…she looks a bit tired, she has on a little charm bracelet with gemstones for each of her grandchildren. Her face is aged. Her face is beautiful.

I stare at the children running down the mall to the food court. Oh listen to their pounding feet! And look at those smiles.

I stare at the harried woman carrying a huge handbag, trying to go somewhere in high heels and tight clothing cell phone attached to her ear, not seeing where she is going. Why does she do that to herself?

And then I see someone in a wheelchair. I smile and wave. I know how invisible you can feel when you have to ride in one of those things. The only people who pay attention to you are little kids in strollers who giggle at you…seeing a big person in a grown up stroller. Everyone else averts their eyes, or pretends you are not there

I guess the Real World may be a bit overrated. What have I actually lost in being forced to slow down for lupus? I have more friendships now than before. I have time. I have some solitude. I have quiet. I have a happy little family…they know where I am all day, and they know that I will be there totally excited to see them and be with them when they come home at day’s end. They know how eager I will be to listen to their daily triumphs and struggles.

I have a rich internal life. My mind has the space to explore thoughts. I have the luxury of spending an afternoon thinking about a dream from last night. I am able to savor a conversation, not having anywhere I have to rush off to.

Okay so I can’t go out in public very much. But, wow when I am out…I am so thrilled. I don’t feel put out, or stressed. I think GREAT…let’s have an adventure today.

When I go into remission…as I have every hope of doing… I don’t know if I really want to give up this little double life that lupus has given me.

I will happily live without the pills, the fatigue, the pain, and wondering about my mortality.

But, lupus has carved out a life for me that I never would have explored if I had continued on the path I had chosen. Never.

So call me nuts if you want to…if you haven’t figured it out yet, I won’t care…and I won’t take it personally…but,

Sometimes I just have to say, “Thank God for lupus.”


thebaabee said...

My Sweet Friend. Yes, I complain that it has taken away so much, but I too have often said "Thank God for Lupus"  I know what you mean when you say that.  In one of my journal entries I say it has given me many things, this Lupus we have.  It has given me the thing you write about.  I love that.  One of the most glorious things it has given me is a wonderful closeness with my brother and that I will always cherish.  Love you Lu

klconard1 said...

Loretta dear, if it were not for this disease, I'd be too busy like I used to be.
I'd likely still be speeding through every day without stopping to appreciate the small blessings.   I spent much of my life that way.
I didn't have time to sit and enjoy the baskets of petunias I hung on the front porch.  Or watch for those tiny whirling miracles of flight who come to sip their nectar.
This year, I've seen the hummingbirds right on my own front porch and treasured those moments.  I've sat there and admired each petal of the abundant flowerings on my double-begonia.
I have learned speeding through the day because I can is not as rewarding as it used to be.
loving you

nonna355 said...

I sit in awe of all the things that you accomplish, to paint, to write, your
words flow like beautiful music.
I smile as I read your words, I too hate fashion but more so because of
the body I have developed from years and years of prednisone...but
I am still the same person to my husband, he must see thru rose colored
How well you understand how I feel when I use my scooter to shop or
get around~~there is nothing like alittle one peering over their stroller
trying to figure out what your doing in one <vbg> or better yet one that
has mastered the art of walking and their little eyes give away their thoughts.
Not everyone acts as though we're invisible, thank goodness for the kind
souls that ask if they can help put my packages in the car, or if I need
help loading the scooter back into the trunk~
Ah, time to reflect on life~I have lots of time now, I don't use it to my
fullest advantage, it takes to much effort, and for that I feel guilty.
But I have learned so much from having lupus, I have learned to be
thankful for everyday that I am here~~I have learned that things could
always be worse.. I have learned the true meaning of love and compassion
not only for my family but for the special lupus friends I have made over
the years.
I've learned to take today and find something good in it, because with lupus tomorrow just may be alittle harder.