Pajama Day

“Chilling out on the bed in your hotel room watching television, while wearing your own pajamas, is sometimes the best part of a vacation.” - Laura Marano

I have been trying to recall when, if ever, I have spent a day in my pajamas when I wasn't desperately sick or recovering from surgery.  Then there was today.  It is six o'clock in the evening.  I am still in the pajamas I put on at six o'clock last night.  In fact, I'm still in my bed watching innocuous movies and playing Words With Friends.  It has been a wasted day and a needed day.  I am teetering on the edge of burnout, putting in too many stressful work hours in the winter that will never end.  It has been alternately snowing and sleeting since nine o'clock last night, my windows a constant patter of ice pellets hitting the panes.  I am forgetting what the sun looks like in the ever grayness of the sky.  It is April 14th and bewilderingly it is still winter.

My plan was to get some spring cleaning done in these days of my husband's absence while he is on his annual golf vacation.  But my closets are in the same disarray that they were in yesterday.  I am housebound, yet unable to muster enough interest to do anything in my house.  Some pretty new stones I bought last week are languishing in my craft room as is the necklace I promised to repair for my sister.  A half dozen pieces of furniture are waiting for my creative touch.  If I go downstairs, I will feel guilty for not at least making a start at getting them done but I can't see them from my bedroom.  Out of sight, out of mind.

I was supposed to have an overdue dinner with some friends but they live in a country home, too far from the city to make the perilous drive tonight.  I would order in dinner or go and pick it up but it is far too nasty outside to ask anyone to deliver it or to venture out for it myself.  I have some mussels in the freezer that I can always heat up or I can make a bowl of angel hair pasta with a portobello cream sauce.  I'm reasonably sure there is one last split of prosecco in the fridge.   I might even take a bath and change my pajamas if I can summon the energy.  I'm afraid to look at the weather forecast for tomorrow.  Eventually, I will have to get out of bed.

Pieces

“The worst thing about falling to pieces is that humans can do it so quietly.”
― r.i.d

At the end of my treatment for breast cancer in 2006, a very generous friend treated me to a day at a luxurious spa on Queen Street.  I had a pedicure and body scrub followed by a hot stone massage.  When the therapist put a hot stone on my solar plexus, I started to cry, small tears at first which developed into a salty sea.  I was embarrassed by my tears, unable to stop them and stunned by my level of grief.  For nearly a year, I had been brave through the pain of two surgeries, the debilitating side effects of chemo and the almost paralyzing fatigue of daily radiation.  I put my best face on every day and went to work.  I still ran my home and looked after my family.  I didn't see the meltdown coming.  If I was going to fall apart, I expected I would have done it earlier.  I had survived, there was nothing to cry about at that point.

For the last two years, I have once again been staring my morality straight in the eye.  Two surgeries, lots of pain, lots of fear.  Heart failure and heart failure the sequel.  I've mostly been brave.  I put my best face on for every medical appointment, wanting my doctors to like me enough to work hard at saving me.  I put my best face on to go to work.  I run my home and I try to take care of my family and friends.  Through the grace of God, I have survived.  The news is good.  The surgery has been declared a success.  And yet, now on the other side of it, I am feeling those small cracks begin along the fault lines of my soul.  I suspect the crash is coming.  I'm not looking forward to it but maybe it's what I need to let the true healing begin.

Checking My Balance

"Where wealth is health, bankruptcy is death." - John Maiorana

Last week I started to wonder if I have become emotionally bankrupt.  As silly as it sounds, this pondering was a result of my response or lack thereof to the last two episodes of This Is Us.  My friends were posting on Facebook that they had cried buckets after the late night airing of an episode on Super Bowl Sunday.  Another episode aired on Tuesday night.  Some of them were still crying on Wednesday.  Then I started to see magazine articles popping up in my newsfeed about how heart wrenching the episodes were.  I really like This Is Us and normally my emotions tend to be a bit close to the surface.  I'm that person who cries at Hallmark card commercials.  But for some reason, I didn't shed a tear during either of those episodes.   I could appreciate the theater of them but they left me feeling nothing. 

So, living in my head, as I have been doing lately, I started to worry.  Why are my emotions so flat?  What is wrong with me?  I thought perhaps it was just cabin fever.  On the day my post-surgical restrictions were lifted, I celebrated by putting my hair in a ponytail (a two-armed task which I had not been allowed to do), drove to the grocery store and the hardware store.  My mood improved a bit but I still felt pretty flat.  A few days later, there was another mass shooting at a school in Florida.  I can now definitely state that I am not emotionally bankrupt.  I cannot stop crying.  I am experiencing a depth of sadness that I haven't felt for a long time.  How is it possible, I keep wondering, that one morning a group of mothers kissed their teenage babies goodbye and dropped them off at school for what would be the very last time because they would be shot to death in the corridors and classrooms by another teenager with an automatic, legally obtained gun?  How is it possible that their senators and congressmen, governors and even president lack the will and interest to do what needed to be done so long ago to keep them safe?  What were their lives worth to the politicians who took so much money from the NRA?  Maybe I don't actually want to know.

Emotionally bankrupt - no, just saving my deepest emotions for things that are real and I can add a lot more emotions to the list.  I am not just sad, I am outraged.  I am scared for my American family, for my cousin Stephanie who is a teacher, for her daughter Bella who is a little school aged child.  I am resolved to do something about this horror.  I don't know what and there are some who will say it is not my country - not my business but of course I will not, cannot accept that.  There are no borders that restrict love for family and care for others.  I don't know what the right action is for me to take now but I will figure it out.

Waiting for Parole

“Stone walls do not a prison make, nor iron bars a cage.” – Richard Lovelace

It has been a little more than three weeks since my surgery and I'm suffering badly from cabin fever.  Everyone has been really kind, offering to drive me around or do my errands for me.  While I'm very grateful for their attention and kindness, I am climbing the walls.  I don't want to be driven around.  I don't want to be accompanied on every errand.  I just want to get in my car and drive to the craft store or the bead store and spend an hour wandering the aisles and looking at all the things I don't need but that give me joy to look at and that spark my creativity.  I want to pop down to the hardware store and pick up a case of canning jars, come home and can the dark sweet cherries that are freezing on my back deck and mix up a batch of wild blueberry jam and some grapefruit jelly.  I want to paint the table with the carved legs that has been calling to me to be refinished but that I am not allowed to lift for another week.  I'm waiting for my four week post-surgery sentence to end - waiting for parole.  

Another week and I will be able to go back to physio, which I have so much missed, not just for the relief it gives to my aching bones but for the way my therapist Claire, soothes my soul and spirit.  A couple of treatments under her capable hands and I will once again have the feeling back in my left toes as well as two functional shoulders. I can hardly wait.  

I'm trying to be patient.  Trying to understand the lessons of this latest challenge to my mortality.  Looking for the gifts that this problem surely carries in its hands.  I'm finding it a little harder this time but I'll get there. 

J A C K I E

"A  rose by any other name would smell as sweet." - William Shakespeare

It's petty but it's getting under my skin.  An old friend of mine, writes my name as Jacquie.  She comments frequently on my Facebook page.  Perhaps because people see her comments so often, a number of my other Facebook friends have started writing my name as Jacquie, Jaquie, Jaqui or even just Jacq, I guess as a derivation from my full first name.  But my name is Jackie.  I have always written it as Jackie.  I sign my name as Jackie.  I sell my wares under the name "Jackie's Creations".  I'm not sure why it bothers me so much but it does.  It annoys my sister, Cathy, when people spell her name with a K after they have seen her name correctly spelled with a C.  Perhaps we are all sensitive to the use of our names. Perhaps I'm just nuts.

My name is Jackie.  And while it is pronounced just the same as Jacquie, Jacquie and Jaqui, to my eyes it does not look as sweet when it is not correctly spelled.

Recovering

“Find a place inside where there's joy, and the joy will burn out the pain.” - Joseph Campbell

The truth is, it was worse than I had feared.  The level of pain was beyond anything I thought I could withstand.  I spoke to the nurse practitioner the day before and asked her to make a note on my file that I needed to speak to someone in anesthesiology about minimizing the pain.  She contacted them but they were not prepared to have a conversation with me.  So twenty minutes before surgery when I met the doctor who would be in charge of keeping me pain free, I alerted him to my concerns.  I talked to him about my last experience with pacemaker insertion and about the pain I suffered when I had an angiogram in October.  I begged him to be gentle with inserting the needles and tubes he would be putting in my arms.  I told him about the seven tries it took the team at Mt. Sinai to get an IV into my arm.  He rolled his eyes.  

I sobbed on the operating table for three and a half hours.  They tried to keep topping up the local but it didn't work.  They tried to put me to sleep but the pain was so intense, I could not sleep through it.  They kept my face draped.  No one saw the tears though I felt desperate for someone to wipe my wet face.  My right shoulder alternated between the sensation of a hot knife stabbing me and an unbearable ache.  It wasn't even the shoulder they were working on.  After a couple of hours, I begged them to allow me to reposition myself.  They stopped so I could shift.

At the end of the surgery I told the surgeon that I will die before I will allow him to do that to me again.  The battery on the defibrillator will expire in five years or less.  He clearly felt terrible.  He told me that while the vast majority of people have no nerve endings inside their veins, it is not true for everyone.  Ninety-nine point nine percent of people would feel no pain other than the topical reaction to an ineffective or inadequate local.  But a tiny fraction of people have nerve endings there.  I am one of them.  He had only had this happen once before. If he believes my heart can withstand it, all future surgeries will be done under a general anesthetic.  I suppose that is something.

I cried on and off throughout the rest of the day and night, saving my tears for the time I was alone.  I didn't want to upset my family.  Still, I felt overwhelmed with the trauma.  I'm still trying to work through it.  I tried to sleep it away but I was not in a private room.  The woman in the bed next to me had a lot of company.  Nine people shouting over one another in Italian stayed until almost 10 P.M.  They used the bathroom in our room.  I was disconcerted and disgusted.  When they finally left, the moaning and calling to God in Italian started.  It went on all night.  I was desperate to sleep, dehydrated and in pain.  There was no care, not a single person offered me a glass of water.  I drank the ginger-ale that my sister left next to my bed.  I was so grateful.  At 3 o'clock I got up, used the bathroom and read for a while.  At 4 o'clock I dropped my heart monitor from my bed, pulling the leads off my chest.  I could hear it beeping at the nursing station a few steps out my door.  No one came and I couldn't manage to reconnect it.  I got up and walked to the nursing station to get it reattached.  At 5 o'clock I finally fell asleep.  

Six o'clock brought a technician wanting to do an ECG.  Six ten brought someone who ordered me from my bed to get weighed.  Then there was blood work.  I pointed to the large red sign on the wall behind my bed - no blood work, IV or blood pressure to be done on the right arm.  The technician told me to get over it.  She stuck the needle in with hostility and walked away leaving my right arm badly bruised.  The night nurse came in to do my vitals.  She was supposed to do them hours earlier but she hadn't bothered with me during the night.  Ten minutes later when her shift ended, the day nurse came and did my vitals again.  She asked me if I had my own meds with me and I told her I did.  She told me to take them and I told her I would after breakfast.  I cannot take them on an empty stomach.  For some reason, breakfast came late to the unit.  Mine didn't come at all.  She checked once again to see if I had taken the meds.  I told her I was still waiting for breakfast.  She called the dietary department.  They had somehow forgotten me.  The food was disgusting - cream of wheat, a slice of Wonder bread, still partly frozen and a prepackaged hard-boiled egg.  I could not face the cream of wheat.  I ate the Wonder bread and opened the egg.  The smell was nauseating.  I held my nose and choked it down.

I didn't get picked up for my 9:10 x-ray until 9:40.  I stayed in the x-ray unit for thirty minutes after it was done. There was no porter to bring me back to my room.  The nurse practitioner wanted to know where I had been when I got back.  I was late for my meeting with her.  It had thrown off her schedule.  I tried to be patient.  She is no doubt, a competent young woman but she looks to me like she is twelve years old and she spoke to me like I am a doddering old lady. We were interrupted by the technician who came to check my device.  The nurse left me some meds to take.  I asked what they were.  She told me to take them.  I pointed out to her that they were not my meds. She took them away.  Then back to the nurse practitioner who told me that she was reluctant to let me go home as my blood pressure had been so low in the morning though it was back to the low end of normal.  I told her I was going home regardless.  The doctor came to see me.  He apologized again, saying that he didn't remember the pain issue from my first pacemaker surgery.  I told him I would forgive him as long as he let me go home.  He agreed.  The nurse practitioner would not execute the paperwork for three more hours.  At nearly 2 o'clock I was finally on my way.  Home has never looked sweeter.

It is now two days later.  I have mostly stopped crying though I still have my moments.  My husband has gone back to work.  I am alone though my sister drops in to feed and water me.  I'm relishing the solitude - relieved that I don't have to hide in the bathroom or pretend that I'm napping when I feel a bout of tears coming on.  I put on a little bit of makeup.  I look a bit gray and there are dark circles under my eyes.  I'm trying not to upset anyone.  The sun is shining - some respite in an otherwise gray day.  Tomorrow will be better.