I believe the time has come to admit that my life as the choo-choo engine that could has evaporated.
I turned 45 this past week. And I got to thinking that I am really tired of fighting, fighting, fighting every day of my life to be the person I used to be.
Quite frankly, the person I used to be is not even someone I would chose to be around any more. That person wasted time on being busy; believing that being busy was a sign of one's importance. That somehow managing to schedule every living breathing moment of that old life sent out the signal that I was important, or that I had achieved my goals, or that I mattered.
Yep... loads of pride.
And pride has been what lupus has stripped away from me layer by layer by bulky heavy layer.
When I left work due to disability, the pride that I wore like a heavy armor took a beating. If I could not work... then who am I?
I fought hard to recuperate so that I could return to my career. I felt like I was drowning in an ocean. Actually, I was drowning in the "sea of me", but I couldn't see that. Too many salt water tears in my eyes as I grieved for my "old life".
And here's a real kicker when you get whomped by disability... the bills keep pouring in. The disability payments do not. Our family income was sliced in half. We started selling off things just to cover the bills.
More pride was surrendered when I had to admit that I was not going to be returning to any job any time soon. We had to file for a deferment from my student loan that had paid for graduate school; graduate school training for a career that I could no longer participate in.
Every time I talked with the student loan peole, I bust out into tears like someone had just told me that a loved one had died. Yes, it was that bad. I felt absolutely humiliated. My husband took over in order to protect me from the constant upset.
Yet, another layer of pride flew out the door when we finally decided to sell my car. I was notdriving to work any more, heck... I could barely drive any more. I waved good-bye to my object of freedom and swept some pride under the rug.
I was not the poster child of patient endurance through all of this. I kicked, screamed, ranted, cried, and fussed the whole way... only taking time out for a nap or two.
So with the exception of two, my old friendships dried up and drifted away.
I always thought I was a good friend. Swallowed some more pride and spent a lot of time feeling sorry for myself for being abandoned.
I still had enough pride in me to forget to think about the reasons why those friendships ended and owning my role in that.
I worked myself into enough of a stew to determine that since I was home full time I would prove to myself and everyone around me that I was super mom and super wife. I chose to forget that this body was not with the program. I worked myself up into flare after unbearable flare by forcing my body to do chores and tasks that it was no longer capable of doing.
Instead of asking for help, I piled up the clutter in an extra bedroom and slammed the door shut. Pride has no boundaries, including stealing floor space from the family.
Eighteen months after being told officially by the medical folks that I have a disability, I had to sit in front of a judge with a lawyer to PROVE that I have a disability. I had not even acepted that I had a disability... that whole scene was surreal. Begging for what I had put into the system from years of employment was one of the most degrading events in my life. (And this said from someone who has survived abuse.)
We finally got the disability income. The settlement just paid off the debt that had accrued. My old lifestyle of popping into a store and buying whatever whenever I wanted to was long gone.
More pride trudging out the door.
Throughout all of this upheaval, I clung to maintaining some kind of public face. I wrote about these hurdles with lupus. I wrote about other interests, and I cartooned. But, I was always chasing the carrot at the end of the stick. My pride was still in the driver's seat dictating that I HAD TO BE the BEST. Overachieving, trying to prove to everyone and myself that I was some how valuable because my writing was receiving recognition.
In the meantime, I was continuing to sacrifice my health in order to keep up the pace reuqired to pull in that kind of attention.
I have juggled too many projects at once, trying to hard to please my pride. She is a ravenous task master.
I wanted to launch a fully functioning web site this autumn, but I just can not. I wanted to be cartooning several comic strips a week, but I just can not. I want to blog every day in each of my blogs, but I just can not. And I have several book projects piling up.
Folks, my body is worn out and tired. Even what pride I have left (and there is plenty left... I am always going to be working on that)...
anyway...
My body is not cooperating.
Over the past three years, I have been backsliding time and time again. I am now reduced to having a window of three to four hours out of my day in which I am "functioning" well. And some times those hours are not even consecutive.
The depression has lifted significantly, but maybe that is due in large part to the fact that I am accepting reality. I have to learn to live within the limitations of this body until the time comes when this body, mind and spirit are able to heal fully.
I have set my priorities firmly.
So I will be slowing down. Actually, I already have. Any of you who read this blog regularly know that.
I just thought I would take the time to tell people why.
At this point on my healing journey, I am couched (or stuck in bed) a good deal of the time. My husband has paved the road so that I can stay connected to my online buddies. He gave me a laptop computer with wireless internet connection so I can be online from bed.
So you'll never know when you're getting a "yoohoo" from me while I am scrunched up under the covers!
And regarding the blogging and cartooning... I am grateful for every moment I have placed into this work. And I am going to keep writing and drawing. But, I just wanted to let everyone know that because I have slowed down, I am thoroughly ENJOYING the whole thing. I get so much happiness when I complete an entry or a comic strip. And when I hear back from people... it means the world to me.
And... in the words of the great Forrest Gump...
That's all I have to say about that.
copyright 2007 Loretta Kelly, MSW
3 comments:
great blog information on lupus, i know all too well.
hi,
belated happy bday!
i end up on your blog through google.
so you have lupus too? its not great really to have it. but i still look at the brighter side.
can we exchange links?
hi,
i set up links to all my post about lupus in my blog.
you can see this links under my lupie life story.
thanks/
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