April 20th, 2014

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.

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