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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Sadness and Miracles

I am so relieved to be home, but there is no getting back to normal as there is no normal left.

I had been in the hospital for three days while the options for surgery on my gall bladder were batted around.  That third day my surgeon, a local superstar wunderkind, previously all good cheer, came to me with an absolutely stricken look on his face.  An ultrasound, x-ray, MRI and CT scan, all done while testing the gall bladder, were showing a mass on my liver.  It did not look good, he told me.  In fact, it was probably a worst case scenario.  I was pretty stunned, but not as upset as I would have expected.  I didn’t cry or anything, I was just numb.  Fortunately, my friend Christine was with me the first time he broke this news and that made an enormous difference.  Thank goodness I was not alone.  He had already been concerned about doing gall bladder surgery because of my compromised breathing.  Now the surgery I needed for a liver tumor was so complicated and serious, I actually had to be transferred to a different hospital where he worked with another surgeon who specialized in liver surgery.  And there was no question of not doing it.

When I posted this on Facebook, the response was staggering, with comments and encouragement and support from almost one hundred people, some of whom I didn’t even know.  Father David, our wonderful Interim pastor, visited and prayed with me, but to be honest, my own prayers were hollow.  I was dazed.  I sent final messages to my children and funeral plans to my friend Louise, to be given to the kids as needed.

The night they transferred me I had a final CT scan before they organized the surgery.  The next morning the surgeon was in my room again, this time almost speechless.  He felt like an idiot, he said, because the CT scan from the night before showed no tumor on my liver anymore.  There was nothing there.  Nothing.

I did not believe the surgeon was an idiot, although I don’t think that was the most appropriate approach to the news he had.  I also do not believe several doctors could have misread multiple radiology studies.  On the other hand, I had had no expectations of miraculous healing.  I just wanted a peaceful death.  Full of self-loathing, which is cheerfully supported by the people I love most in my life, I never considered myself a miracle candidate.  But it seems that might be exactly what I got.

I have sign hanging on my bedroom wall that says “Count Your Blessings”.  I bought it long ago, before I got sick, when I was leading what I felt was a charmed life.  Four fantastic kids who were wonderful, fun company, a terrific, rewarding career, my little dream cottage, travel, back in school for my Master’s, there were almost too many blessings to count.  Then they started falling like domino’s when I was diagnosed with transverse myelitis and, ultimately, MS.  My family relationships are now in a shambles, with most of them not even speaking to me anymore.  My career is finished and I will lose my cottage anytime now.   Travel?  I cannot even travel to my back garden.  My friend Marc, the Wheelchair Kamikaze, likens a diagnosis of MS to a personal Hiroshima. (Read his moving post here)  It may seem like a histrionic and hyperbolic reference.  But the comparison is apt in that the destruction of your former, healthy life is complete.  Our lives are ultimately shattered as thoroughly as that city was by the atomic bomb. 

Despite what turned out to be incredibly good news about no tumor, it is very, very hard to keep positive.  It is a gorgeous spring day today here at the shore and my family just left for the beach and the Ocean Grove flea market.   In my previous life I would have been there already.   I long to sit in the sun and listen to the ocean, to stroll around the flea market and people watch.  But I can’t get there myself anymore and I wasn’t invited to join them.   I am too much trouble to take along.   The logistics of getting dressed, getting me and my wheelchair into the car and then getting onto the actual sand are overwhelming. 

I am simply so weary of being ill.  Anyone else would have had the simple gall bladder surgery already and would be on the road to recovery.  I sit here, a bundle of complications, with a tube in my abdomen, playing a waiting game until someone is brave enough to take me on.  I have already been told I can expect to wake up from surgery with a tracheotomy and on a vent (a hole in my throat and a machine breathing for me).  They anticipate that I will not be able to breathe on my own as I come out of the anesthesia.  The prospect of living on a ventilator makes me feel physically sick.  Yet I feel tremendous guilt for being so miserable, because I know there are people who are far worse off than I and I am still fortunate in many ways.  I still have many, many friends, each a blessing in themselves.  I suppose my ‘miracle’ is another blessing, put in my path to ponder.   I continue pondering…but mostly I ponder my lost son, how incredibly sad I am and how much I miss my old life.

____________________

To while away the idle hours I have been doing a lot of embroidery and some sewing. Whilst my familiar perches at my head. 

 

I loved these little sailboats from Sew and the City.  I had saved the pattern for my youngest grandson, but I think he has probably out grown them already.  So I stitched them up for the baby of a dear, dear friend who is coming to visit.  I stuffed them lightly, the easier for bitty hands to grip them, and I tied together a few bells and put them inside each.  If the little nipper managed to somehow open the toy, they are too big to choke on in a bunch like that.  My Resident Critic, my daughter, felt they are too girly.  But babies love primary colors, so I stuck with scraps from my Depression-era fabric patterns.  I think they are cute.

The only problem is it made me think of my precious little grandson, who I have only seen twice since he was born eighteen months ago.  I have lost so much, did I have to lose him too?  So I ended up crying the whole time I worked on them.  Tears are supposed to be cathartic.  They are not.  I simply feel worse than ever, bereft and utterly broken by the casual cruelty of this inexplicable estrangement.  

The birds and pansies came from a pattern that I got from an embroidery designer who is based in Cape Town, South Africa.  They were inspired by a Victorian gift book published in 1896.

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Love Hurts

I would like to ban Mother's Day.  Perhaps Christmas and Thanksgiving as well.  For so many of us, it is simply one more opportunity to have your heart ripped out of your chest.  It could be a passive aggressive or actively abusive partner, a thankless, deliberately hurtful child or a resentful, narcissistic parent.  Or, for those of us who have truly hit the jackpot, it could be all three.  Not to mention missing my beloved grandmother, who was like a mother to me.  The day ends up being just another exercise in pain, regret and self doubt.

I never heard from two of my four children on Mother's Day.  But I Skyped for almost an hour with my daughter in Texas while we laughed and she repeatedly told me she loved me.  And my other daughter posted this on Facebook:

Happy Mothers Day to all the amazing women I know especially my mom who always surrounded me with strong wonderful women and made me the mother I am today. And to my mother and sister and in laws who treat my baby girl like their own!

I guess I am not all bad.

Happy Mother's Day to all mothers out there and to all who are like mothers to other people.  Thank you for all you have done and continue to do.

Music to be sad by (lol):


   










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Random

Gee whiz, this work thing really gets in the way of your personal life!!

Between work and wedding and physical therapy three times a week, I have no time for anything.

But here are a few things that have been on my mind.

Eye

I got a new prosthesis this week. This always makes me cranky and unhappy. It reminds me of all the things that could have been and of what I don’t have. This is usually something I try not to think about too much. But at a time like this, denial, my good and faithful lifelong companion, deserts me. Reality is unavoidable.

I have big green eyes. A few years ago, the ocularist who was making my prosthesis remarked I had beautiful eyes. I thanked him politely but cringed. I wanted to say “You mean I may have had beautiful eyes. I could have had beautiful eyes. I did have beautiful eyes.”

But not anymore.

It just makes me sad.

Living Alone

I am currently living alone for the first time in my life. It is blissful.

I had one 23 year old parasite I mean child still living with me until 3 weeks ago. We had a serious, civilized discussion and she organized herself and moved out as a responsible adult.

HA HA HA HA

In my dreams.

What really happened is she ignored me the day of my eye surgery, went out that night in my car and left me alone for the whole night, let my indoor cats out by leaving a door open and committed various and sundry other passive/aggressive insults to my existence.

So I calmly explained to her why this was a problem for me and how she was exceeding my boundaries.

HA HA HA HA

In my dreams.

What really happened is I had a lunatic, maniacal melt down and did an imitation of the kid in The Exorcist, complete with head spinning and levitation. I think I spoke in tongues too. Because after a while it wasn't even English anymore, just shrieking, incoherent gibberish.

So she is now living with a friend and all are happy. Well, I actually don’t know if all are happy.

But I sure am.

Dreams

IV Solumedrol, which I have been given multiple times to treat out of control MS symptoms, has many terrible side effects. Osteoporosis, kidney damage and diabetes are all things that it can cause with repeated use.

So what is my concern about this powerful steroid? Excessive facial hair.

Last night I dreamt that dozens of bristly little hairs burst out all over my chin and face and no matter how many times I plucked them, more kept popping up. It was horrible.

What can I say, I’m shallow. A hairy chinny chin chin is a fate worse than death.