One More Time
By ShoreBookworm on November 07, 2013
On scales large, small and in between, I have had to re-invent myself any number of times throughout my life.
As a four year old, I had to learn to live with a disability after an accident caused me to lose my right eye. I had to adjust to my realigned peripheral vision, deal with curious, sometimes rude, people who questioned me about my bandages and then my prosthesis. In general, I had to learn to become a normal-but-different little girl.
Each age brought new opportunities to try on different personas. I never found a perfect fit, because I was interested in so many things that I was like a chameleon. I could wear a different identity a dozen times a day. Bookworm, writer, poet, hippie, rebel, compliant, outspoken, shy, tomboy, girly girl, daydreamer, protester, studious, overachiever, slacker, sad, carefree.
Reinvention happened over and over. Wife. Mother. Widow with four children. Career, advancing from front line entry level to executive. Homeowner, giddy with pride. Graduate school, 4.0. Prosperous, living the good life, traveling, enjoying my grown children, grateful for all of this and my many wonderful friends. So happy! Then MS struck and everything starting to slip through my fingers.
More reinvention, in reverse. This disease chipped away at all my selves, gradually stealing my career, independence, dignity, security and, unbelievably, my children. For my oldest son has slammed the door of his life right in my face. My younger one told me he couldn’t cope with me being sick, so he just avoids me.
Multiple sclerosis – it is the gift that keeps on taking. As years passed, I was gradually, resentfully, reluctantly adjusting to this new individual. I could not accept her or embrace her. I could not say stupid things like “I am so glad I have MS because it forced me to stop and smell the roses.” (People actually say that!) I could smell the roses just fine before, thank you very much. I desperately wanted my old life back. But I was finally acknowledging that was never going to happen. So I needed to deal with it. I needed to keep, keep, keep reinventing myself, no matter how much I hated it.
I starting writing again, something I had given up on after college. Love of words was embedded in my DNA. Besides being a mother, writing my blog is hands down the most fun, rewarding thing I have ever done for myself. And with writing came new friends and renewed contact with old friends. I will never fail to be astonished at the amazing, giving, caring people that surround me. Their endless affirmation has kept me going.
Then came breast cancer. Of all the despicible things! What is with this, God?!? I don’t get cancer!! No one in my family gets cancer. But I managed to hit the crap lottery again. Time for a whole new reinvention. The Before Disease, MS, was incurable and painful and cruel. Cancer can be all that and more. New vocabulary, new doctors, new procedures. Lumpectomy, radiation, hormone treatment. I was not a candidate for chemo, as I had too many health complications. Chemo could kill the cancer but it was more likely to kill me first. This was a blow. But, ok, I’ve dealt with blows before and I will do it again.
It Just Keeps Coming
This week brought news that I must reinvent myself for what will most likely be the final time. The cancer has spread.
Now I am aware none of us are getting out of here alive. I had just hoped for a bit longer than 59 years. I certainly never thought I would have to reinvent myself as a dying person.
I know it is counterproductive, but in these early days I find myself thinking of all the things I will never do. I will never have a chance to live in England, which had been a lifelong dream. I never will publish that novel. I won’t see my adored grandchildren graduate from high school, marry, start their own families. I will never go to another Springsteen concert. There are so many books I will never read. I am crushed by all the fascinating places I will never visit, the wonderful people I will never know, the dear and wonderful people I already have in my life and will never see again.
Now I must acknowledge my prince will never come. I will never again have a life partner, someone to help me carry the sorrows and relish the joys. There is too little life left.
So many nevers.
A dear friend was visiting last week. She has been resoundingly healthy for most of her 70-odd years. But this past summer she had surgery that, while serious, should have been very straight forward with an uncomplicated recovery. It did not work out like that and she is still recuperating. As she was leaving she said something about her ‘new normal’. Isn’t it funny, I said, that a ‘new normal’ never means anything good? We laughed. But it’s true. New normals are always about loss and forced change. They are always about having no choice but learning to do things in a new way, without the normal, and usually beloved, thing that is now gone.
My new normal is currently an excruciating awareness of my mortality. Every act, every conversation is fraught with portent. How much longer? Is this the last time I will do this, see this, talk to them?
It is very strange, this particular new normal, and I am struggling with this particular reinvention.
But I am nothing if not stubborn. I will not go quietly or gently into the night. Even with my limited physical capacity, I am going to do as much as I can in as much time as I have. In my mind I am WILLING the radiation to work. If sheer force of determination can cure me, I will live forever. I am heading into cancer kicking and screaming with objections, praying fervently for a cure.
I am not ready to go just yet. Stand by for further adventures. Because we all know there are bound to be some.
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