Monday, October 28, 2013

Just One More Time

On scales large and small, 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.  Living the good life, traveling, enjoying my grown children, grateful for all of this and my many wonderful friends.  So happy! Then MS 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

MS – the gift that keeps on taking.  As years passed, I was gradually adjusting to these new personas.  I could not accept them or embrace them.  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 f-ing 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 probably be the final time.  The cancer has spread. 

Now I know none of us are getting out of here alive.  I had just hoped for a bit longer than 59 years.  I 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 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 going to be some.


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Jane Turley said...

My dear Marie, I am so sad that, once more, you have been dealt such a terrible hand. Sometimes it is so very hard to accept what seems the random nature of our fate:(

I am pleased though that you will not go quietly and gently to the night; I'd expect nothing less! You have incredible inner strength and resilience and I feel sure these qualities will help to guide you through the difficult times ahead. Remember too, that you have a very powerful and eloquent voice and using it will help not only you but, very possibly, many others who are suffering from cancer and MS. I think there is time yet to share more of your wisdom and humour with the world:)

I am willing you to kick that cancer's ass, my friend:) XX

annie said...

I'm sorry to read this. I enjoy your blog, and perspective on life. Good luck with everything.

Enjoying the Ride said...

Marie, I'm sorry for all that you're going through, but I'm thankful that you share it with us so thoughtfully and eloquently.

Once in a while I am guilty of writing about the "advantages" of MS, but I try to characterize it as 50 steps backwards in one step forward, to keep it in perspective.

Good luck to you, and please keep writing.

Muffie said...

Oh, Marie, this is just awful. I keep hoping and praying that things will turn around, and you'll be doing better. Then I read this post, and I wonder how you manage to write it all down. And please continue to 'rage against the dying of the light...' I'll continue storming heaven that things get better for you.

beth5393 said...

Hugs coming your way, Marie
Acceptance is not giving up, it is acknowledging the truth. I share your sadness in giving up the dreams on what you think are the un-attainable things, but hear your tenacity in reaching for every last bit of joy that can be had.
Believe in miracles, they happen all the time.

Judy said...

May peace light your path.
May gentle love nurture you
on this new journey.

Anji said...

England isn't all that great.

I'm sure that you are not going to give up without a great battle. My thoughts are with you

Shorespinner said...

Don't count yourself out too soon. I have several friends who are Stage IV with mets and they are still here and kicking after years. 11 years in one case. Thanks to cancer research there are new drugs that enable cancer to be treated as a chronic disease, albeit a nasty one requiring frequent monitoring. But you're used to that I know! I am praying for COMPLETE healing.

The Wheelchair Kamikaze said...

Marie, old friend, I am saddened to hear of this latest battle. That said, I know that you have the heart of a lion, and that you will engage this new adversary with all the weapons at your disposal. Pardon my French, but fuck MS, fuck cancer, fuck it all. Nobody knows what's coming around the next bend, and I know for sure that a dame with your guts and chutzpah certainly will not go gently into the night.

My thoughts are with you, and I rage at the universe on your behalf… XO, Marc

Marie said...

I am overwhelmed by the concern and good wishes of all of you. I am so sorry it has taken me so long to reply to your beautiful comments.

Jane: What can I say? The thought of never meeting you breaks my heart. So maybe I will take that up as a goal to achieve? That will keep me going. That and laughter, of course. Gotta keep laughing, my friend. :)

Annie: Thank you so much for your kind comment. Cancer shmancer, I am so glad you like my blog! lol I will be shameless about my writing until I draw my last breath. lol I hope you keep reading. I will be keeping up with you, too. :)

Enjoying the Ride: Thank you for your lovely comment. I truly hope you are not offended by my thoughtless remark about MS. Everyone needs to live their experience in their own way and I have no right to criticize anyone. You certainly are not 'guilty' of anything except sharing your remarkable and personal journey. You are inspiring. :)

Muffie: Thank you for your prayers and for your concern. I am so grateful for your caring. I will continue to rage!

Beth: Thank you for reminding me miracles do happen. And oh boy, thank you for the virtual hugs. I can use all I can get.

Judy: Thank you for your beautiful and inspiring comment! It is a new journey. One I don't particularly want to take, but who knows what it will bring?

Anji: You probably didn't mean to, but you made me laugh with your blunt remark about England. I know I romanticize it, but for some reason when I am there I feel more at home than anywhere in the world. I makes me wonder about past lives. At any rate, it is what it is and I have to just focus on surviving. Thank you for your faithful readership and friendship. :)

Shorespinner: I cannot even type your name without crying. My dear, dear friend, you have added so much joy and strength to my life over these thirty-odd years. So many happy memories. Who would have ever dreamed either one of us would have to experience this nightmare, never mind BOTH of us?!? Thank you for your encouragement and the wisdom of your experience. I love you very much.

Marc: Thank you so much for your beautiful comment, written with your usual eloquence and poignancy. I am so grateful for your friendship and I believe you captured the situation with just the right word: fuck. Fuck fuck fuckity fuck fuck fuck. Sigh. I love it that you think I have guts. I feel like a wimp right now. But I am trying to give it my all. That is all I can do.

Thank you EVERYONE for leaving a comment. You guys keep me going. xoxo

Webster said...

Marie, reading this took my breath away. I am so sorry you are going through this. I am also happy to read you saying fuck... fuckity fuck this cancer. Fuck MS while you're at it. Be alive each day that you live with these bastards. And hopefully somewhere in there you will find some joy, too.

Oh, and fuck your kids who are too weak to deal with your life as it is. I'm sorry, but I don't think it is your fault that they are selfish and weak. I am just sorry.

Marie said...

Webster, I second that fuck and raise it by a fuckity fuck fuck! lol Can you fucking believe it?!?! I must have been some cretin in a previous life.

I AM finding much joy, thank you for that. I am so surrounded by loving people and wishes and prayers, that I am overwhelmed.

I wish I could be nonchalant about missing my son but there are times I literally sit and howl with the pain of his rejection. Cancer, MS, losing my eye, being crippled by lymphedema, it all pales beside his absence in my life.

Thank you for your unfailing friendship, my dear Webster!!