Monday, June 3, 2013

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 hereIt 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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Muffie said...

Unlike you, I DO believe in miracles, and I'm sure yours was long overdue! OK, so maybe it didn't cure you of MS or make your life situation any easier, but it did save your life. Maybe it was just an error on the CAT scan, but I'd really think of it as miraculous and happening for a reason.
Love the sailboats -- you're so clever!


Anji said...

Why shouldn't you have a miracle? Perhaps Father David has extra strong prayers.

Having spent a few days with my 90 year old MIL I appreciate how difficult getting around must be for you. We took her for a short walk around the village in her wheelchair - just 10 minutes to see the spring flowers was enough for her. I didn't realise that it was so easy to give so much pleasure. I hope that someone manages to get you out to see the sea.

I don't think that the boats are too girly and I'm sure that the baby will be too busy with them to mind.

The embroidery is beautiful, it's such a long time since I picked up a needle other than to sew on yet another button .

Your cat looks very regal.

kathy said...

I feel your pain..and know you must be in very bad financial shape..medicade I'm thinking. Have you thought of assisted living? It might really be better to have some people may even be good at helping others..I feel that in you. i've looked around not in NJ but in Florida and was surprised how nice some are..i'm sure it's not what any of us picture for ourselves or our family members..wish the best for you.

Unknown said...

I'm sorry for your weariness, Marie. I'm sorry for your daily losses and alone feelings. I'm sorry for the tears that didn't bring resolve, just more tears and fears.

You are loved. Your life has a purpose; God promises that we are here for a reason.

Meaning is not simple. Finding meaning in a life that feels empty is very difficult. I'm sorry.

On another note, the sailboats are delightful.

Webster said...

I am so glad that the spot they "found" on your liver turned out, well, not to be a spot on your liver. Miracle or mistake? Does it matter? It's good news.

Now I hope your gall bladder surgery goes well.

I think your sail boats are squeezably cute - and babies aren't gender savvy until we make them that way. Pshaw on that.

Your cat looks regal, and happy that you're back home.

Marie said...

See what I mean? How dare I be sad when I have people like you in my life?

Tricia, you have reminded me to dig up my copy of "Man's Search For Meaning". I am going to reread it because 40 years of therapy has not been enough. lol

Frankl said "The salvation of man is through love and in love". And that is reaffirmed by the loving support I get from so many of my wonderful friends.

Thank you Muffie, Anji, Kathy, Tricia and Webster!