Here I am, moments before the procedure I said I would never had.  I am smiling because   1.The nurse was able to put in a really nice IV and 2.  I have this really cool heated blanket on that blows hot air through the whole thing.  Small pleasures.

So I am home, with a bit of an infection so I am on antibiotics once again.  I am still in a period of shock, and overwhelmed by all the tape and tubing that has suddenly become the reality of my life. Grief of change, loss of the plan for my life, another wave of the realities of MSA flood over me.

This month's Spirituality & Health magazine has a column by Geri Larkin, author of Close to the Ground; The Seven Factors of Enlightenment. She talks about learning to lean into suffering.  "Until we realize that there is simply no escape from the pain that life brings and that all we can do is sit in the middle of the fire, we only pile suffering on top of suffering.  Resistance is like that.  So we lean in.  And suffering dissipates."

Living with terminal illness is like being hit by a series of huge waves.  Life goes along day by day; I begin to think I have a handle on how this disease works and BAM!  Something knew. 

Having MSA sometimes feels like some deviant gnome with sharp scissors is living deep in my brain; ready to cut the next connection to some important body function. 

This gnome has been hacking away at whatever the cord that connects my brain to my bladder for some time.   First I had an occasional accident, which I chalked up to just getting older.  So I began wearing pads and began a serious exercise program of pelvic floor exercises, guaranteed to do the trick.  So when that didn’t work I began all the tests with an urologist, including a test that includes electrodes, tubes, wires, a male x-ray attendant, and a bucket.   I am not kidding. 

Many medications followed more pads and finally a sacral nerve stimulator that actually worked for a year before the deviant gnome finally managed to disconnect my brain from my bladder. Diapers ensued.  I have been told that in the world of adult incontinence they are called by the brand name Depends.  They were somewhat dependable until the gnome found yet another small connection to snip.  So Wednesday I am having a “Supra Pubic Catheter” put in.  This is permanent, unless Jesus himself comes down and yells surprise!  This was all a joke!   A tube will be placed in my bladder and out my lower abdomen, hence the supra “above” the pubic-bone name.  The catheter then flows into a bag, attached to my leg in something that looks like a holster.  I imagine robbing a store by grabbing the bag and yelling stick em up!  They would probably give me the money just to get me out of the store.

Once again I will go up to Seattle for a day long procedure, including having to have a nearly impossible to place I.V.  Last time I had two anesthesiologists using dueling ultrasound machines looked for one tiny vein, while the nurse quietly checked out my ankle, finally finding a vein and getting the I.V. in before either doctor could even find a vein.  You have to love nurses.

When I first was diagnosed with MSA, before that naughty gnome got to my ability to balance, hold a cup without shaking and caused me to pee all over the place I made a list of things I absolutely would not do.   I just could not allow my family to care for me all hooked up like that.   For example I would never have a tracheotomy, or a feeding tube, a pacemaker or a supra-pubic catheter.  I was convinced at that future moment in time, these things would be deal breakers and that I would end my life before allowing these things to happen to me.

Today I spent the morning with my whole family at our annual Easter brunch.  I have many cousins who were there, cousins with new babies, kids who have grown a foot since last Easter, kids I couldn’t even place the family is so big.  My brothers and sister and all my wonderful nieces and nephews were there, and of course, more babies.    As I write this all three of my grandchildren are playing in the backyard, reenacting their favorite movie Frozen on a trampoline.   I could have missed that. 

In the middle of this next big wave I am surrounded and held by those who love me.  My husband and daughters, my grandchildren and friends.  And I come up for air long enough to recognize that I can still be here, still engaged with a tube in my belly, or for that matter any number of wacky things I swore I would never do.

My dear MSA on-line friends, people with MSA and their caregivers wrote in response to my asking the question “When is it enough?”

From a caretaker I received this note:

“I know my mother felt like a burden to her family for having to depend on us all completely for her care.

But this is how I felt about it; yes it was very hard work and there were times you thought you couldn't take anymore. But I wouldn't change that time with her for anything in the world.

She was taken far too soon as it was at 63. So anytime that we had left with her was priceless.  I look at it this way, when your daughter was a baby, she was completely dependent on you for her care, and even all the ugly phases of that... as we all know, taking care of an infant is demanding too... but would you trade that for anything?  Your love for her overlooked anything demanding that you may have had to go through during that time.  It is the same feeling for us caregivers.  Our love for our mom/wife/grandmother is what carried us through that time and we WANTED to care for her.  We wanted her here for as long as we could have her.  As taxing as that time was for us all.... I would not hesitate to do it all over again, to be able to spend that time with her again.   Let them love you.”

So I am scheduled for Wednesday to have a procedure I said I would never do, and I am happy about it.  The big waves continue, but I am getting better at this soul surfing.

The story goes that in the mid 60’s my Grandpa Bill financed a tavern for his son Bob.  Grandma Lu seems to have been left out of the loop, as this transaction came as a bit of surprise to her.  Now I am not sure if the purchase of our cabin, Granny’s Pad, transpired as a direct retaliation to the tavern, but however it happened, my Grandma Lu bought a cabin on Hood’s Canal for her three daughters.

I remember my first visit to the cabin.  It was the summer of 1965.  We drove down Highway 99 to Highway 101, then through Shelton and right along the Canal.  The first water we passed on the right became known as “Not It”.  What we were waiting for, “It” was the first place you can see the canal along Hwy 101.  That was “It” and it meant the cabin was near.  My brother Randy and I knew all the landmarks along the road, because the first to see the sign to turn  would call “I got it!” and that meant they got to use the little boat first.  Driving to the cabin this last week, in 2013, I again had the feeling of returning to my spiritually special place.  I thought “I got it!” as the sign came into view. 


The cabin itself is simple, two tiny bedrooms, a small kitchen and an open living room and dining area, with a deck that went out over the water.  Remember that this story has three daughters.  As we entered the cabin the first time my mother shows me the bedroom to the left,  that is Aunty Ta Ta’s room (eldest); the bedroom to the right, that’s Aunty Trudy’s room (middle daughter); and my room is right here!  My mother proudly points to the space between Trudy’s room and a small bathroom, big enough for a double bed. Anyone who needed to get into the one small bathroom had to go right past the bed.  That is the birth order of the girls, Ta Ta, whose real name is Catherine, I am named after her, Trudy and my mother, the baby of the family.  I think the arrangement is perfect.

This arrangement of rooms remains today, even though all three sisters have passed over.  So the ownership of the cabin has gone from the three sisters, to two daughters each in Ta Ta’s and Trudy’s families, and four siblings sharing our mother’s third.  That is eight owners.  All decisions and money issues around the cabin are decided by the “Rule of Three”, weeks are shared by threes, money is shared by threes, and decisions are all made by the Rule of Three. Things get done when it is necessary, eight owners have different ideas about what is important, or worth money and time so it boils down to one of us finally just doing it. Everyone is usually pleased by changes and upgrades, unless they are not, but anyway it goes, we work it out.

The thing that everyone agrees upon is that Granny’s Pad is our special place.  In a small cove with a group of cabins all in a row, ours is right on the water.  The tide comes in and out, lapping against the bulkhead, surrounding three sides of the cabin.  In the winter, my favorite time to be at the cabin, the high tides used to completely surround the cabin, forcing us to park our cars up on the Highway and wade in.  I remember those flooded days as so still, not a sound or wave spoiled the expanse of water that spread past the cabin, up to the little road and across to the stream.  Salt water meets fresh.  Those floods don’t happen as often anymore, some remedies have been made, very technical, a large berm of gravel now sits in front of the stream, keeping the stream and the canal from the great conjoining.

I had my first romance at the canal, the handsome young Shannon whose family had a cabin in the next row; I learned to ski and swim really well, my father taught me how to eat raw oysters and make a bonfire.  He used to say if anything ever happened, like the Big One, we were to try hard to get the cabin.  At the cabin we would be safe.  At the cabin, nothing not even an atom bomb could hurt us.  I still carry that feeling of feeling safe and protected when I am at the cabin.  My father told me I would be safe there, and I believe him.

Those where the days of no sunscreen, so we all stayed sunburned from June until school started.  I took several boyfriends to the cabin, but one stuck around.  Chuck became my husband, and I think he really married me for the cabin.   Time goes so fast, soon we started bringing our baby girls, Sarah and Heather, who along with their cousins, all grew up combing the beach for all the treasures we could find.  Giant moon snails, ghost shrimp, there never ending generations of tiny crabs.  Now my daughters are grown and their children are enjoying the cabin. 

Last week, in the middle of a rainy March the children played out on the beach, back in the forest and at the small bridge they call the “Troll Bridge”.  They went through several changes of clothes in a few hours and then joined us in the steamed up cabin, table set for dinner and plates piled with fried oysters and steamed clams.  Our grandson Oliver takes great pleasure in dissecting his clams as he eats.  What’s that part Grandpa?  That is the clam’s stomach.  What is that green inside there?; as he opens the stomach up on his plate.  That is the food he was eating, grandpa responds, not even glancing at Oliver’s plate.  Oh, that’s cool, and he eats the clam bits. 

I felt something hard as I bit into an oyster.  I pull it out, and there in my hand is a perfectly round tiny pearl.  I take a second and just sit in amazement as the canal once more reminds me of life, and the endurance of family, the resilience of the body.  Oliver now has the pearl in his “special area”, really an altar on his top bunk.  All his special things, Legos, rocks, shells, transformers, all the things a young boy holds dear.

Several years ago my friend, Dr. Seji Iwata was visiting from Japan.  I drove him out to the Canal; we saw eagles and elk along the Hama Hama River then went to the cabin for oysters and sake on the deck.  It was freezing cold, the tide was out.  I began picking up oysters from the shore.  Once he realized that the “rocks” I was picking up were oysters he began gathering large handfuls.  We simply opened the oysters and ate them raw, with a drink of very cold sake.  A moment of being with a good friend, the tastes of the sake and oysters and the sun that day is one I picture often as my version of heaven.

Both winter and then early spring brings an amazing array of shorebirds, eagles, gulls, seals and sea lions.  Occasionally whales swim by.  On a sunny January I find myself snuggly wrapped in blanket on the deck, a cup of coffee warming my hands.  I lay still on the recliner and just breathe.  Cool air, warm sun.  I can hear the sounds of the birds that I love so much.  I have both giant and pocket size binoculars, and a spotting scope.  I document in my bird book then bird, the date and location.  Most of my shorebird entries say Granny’s Pad.  Lying in the sun, eyes closed, I repeat my list:

Bufflehead; Golden Eye; Barrow’s Golden Eye; Common Merganser; American Wiggin; Eurasian Wiggin; Red eye Grebe; Grebes in dancing courtship; Cormorant; Cormorant with wings spread to dry; Blue Herron; Eagle; crying immature eagle receiving a fishing lesson; Eagles courting; King Fisher; Surf Scotter; Mallard; Common Loon; Loons courting.

This is the place, at the cabin of the three sisters, in the place of romance and parties, of children and grandchildren; being warm on the deck; the water lapping; walks in the woods, of crisp cold oysters and sake on the deck in January, driving in late on a snowy night and needing to turn the electricity and heat on quickly, I say, "it's freezing in here!". My bird prayer repeating; all of these memories fill my mind during the times that I am in pain, or preparing for surgery, or having yet another round of procedures that hurt so bad they don’t even try to lie by saying “just a poke”.

Bufflehead; Golden Eye; Barrow’s Golden Eye; Common Merganser; American Wiggin; Eurasian Wiggin; Red eye Grebe; Grebes in dancing courtship; Cormorant; Cormorant with wings spread to dry; Blue hereon; Eagle; crying immature eagle receiving a fishing lesson; Eagles courting; King Fisher; Surf Scotter; Mallard; Common Loon; Loons courting.

My story is of the Canal, the memories of being there with friends and family, seasons passing, my bird chant, life itself is stronger than any pain, procedure or medical condition I endure.  I know who I am, I am Lula’s granddaughter, whose youngest daughter is Margie; and I am her daughter.  I have a cabin, a small tiny bit of heaven on Hood Canal, and it sustains me.