Monday, November 26, 2018

The Sophie Chronicles...part 1

Crusin to the airport...smiling

My heart is big enough for this pain.

I have spent more time away from Sophie in the past 6 days than I have in the previous 15 years.  And the most ever days in a row....which before November 20, 2018 had been one.  There may have been one other day I am forgetting, and don't want to be overly dramatic so I am adding an extra for the sake of false memory.  I know the one night, I was in Kohler WI.  I know everything about that one night because my x and I were on the verge of breaking up and my best friend had asked if we could watch their children that evening because she was headed to Madison for a funeral.  My X and I got in a huge fight because I did not think golfing in Kohler WI was going to solve our ills and my friend had never asked anything of this importance of me.  My X had put his foot down her or him.  For years and years I harbored anger at myself for choosing such a ridiculous ultimatum...and Kohler didn't accept dogs.  We never went anywhere that didn't except dogs.  So that day I had disappointed myself twice.  And I am telling you right now I would do anything to get that one night back.  Five thousand four hundred and seventy five days ....would never be enough.  There are never enough days for those we love...we will always want one more.

The calendar that hangs on my wall, November's photograph I didn't like the second it had arrived in the mail...and I often flipped it to December in my room.  It came out darker than the actual photo and felt quite ominous, apparently because it was.  And then there is December...with two of my favorite pictures of Sophie and the message to be brave.

December 2018

 A little over a week ago I wrote a tiny bit about giving Sophie a bath...and how docile she sat.  There were a few things I couldn't say - the most important being a little voice told me this would be the last time I bathed her.  Since I got ill I have had to farm off many of the tasks of caring for Sophie, like taking her to the vet, or making her food.  But a task I rarely delegated was giving her a bath, I had such joy being able to take care of her like that, and she hated bathes so I would always do that myself.  Or micromanage the person who was for me.  One of the hardest things about having a body that doesn't cooperate is not being able to show up.  You don't realize how much of your self worth is tied to what you do.  You do your best to compensate and find value and self worth towards others in many other ways, but being able to depend upon you to show up has been taken out of the equation.  Now many people will tell you I still show up....I will answer any call at any time, I will listen and I will try every coping method to make it to something.  But that nagging feeling that you can't be there in the same way you were takes a toll on your psyche.

That was one of my great fears when I began delegating tasks for Sophie to others, what if her affections change.  In truth the exact opposite happened it was as if she dug in further to my side.  The last six months have been physically very taxing because she no longer cared for others to take care of her - she only wanted me...and this was a hurdle I was willing to jump.  It was mainly the nighttime she changed her eating habits and after all the helpers left is when she decided to eat.  Now my little sweetheart had IBS and through the years we have done a ton of homemade diets.  Lets just say my hands after this past six months may still smell like Gerber baby food that I often would hand feed her as she sat patiently and I sat across her.  At first this was absolutely exhausting, but I then learned how to pace.  First  I would turn off my phone or the tv and all my attention went to her.  Instead of it being a burden it became this gift.  It reminded me of helping my grandmother after her stroke.  So between the hours of 9pm and 11pm most nights you would find the two of us sitting on the floor as I whipped up batches of rice cereal, Gerber ham baby food ( by the way who in the hell feeds that crap to babies, no offense if someone reading this did - not judging but man it doesn't smell very pleasant) and deli ham or chicken and scoop it into my hands as she ate.  Many nights I would talk to her and joke well its just you and me kid.  There were many nights I would tell myself drink this in - this bonding this connection because these are the moments that one day you will ache for...

Just you and me kid

Moments are easily lost in the shuffle of a busy life.  But this illness; and I'm not saying this because I am some zen master, but it forces you to savor moments.  Your life becomes segmented into these tiny moments - and if you don't learn how to be grateful for them this illness will swallow you whole.  So I would tell myself look you are feeding her this is a huge accomplishment and damn is she cute. 

So Saturday night, I don't know what possessed me to get up and go downstairs and give her that bath - I didn't think I just did. Unlike previous bathes when she was done she didn't run like crazy in circles and ditch me like we were playing tag, she calmly stayed wrapped in her towel as I held her and dried her off.

I have a very long post that maybe I will finish because I am a curious person and I like details so I just assume others do too.  That post is much more detailed from Saturday to Tuesday - but maybe its better as a journal entry.  However, I needed to put something out in the cyber world because I'm not sleeping very well and every night since last Tuesday as I'm trying to get to bed I think how will I write this post, do I start at the beginning when I first met her in McDonald's parking lot in Flagstaff or do I start at documenting the end...or discuss what this new beginning is like without my constant companion and a chronic illness.  Or do I write to help others that have gone or will go through this moment and say if I can do it - you can too.  It is all a bit jumbled right now and perhaps that is the best way to go...this is a blog for heaven's sake not Hemingway.  Just because she was perfect this blog doesn't have to be.
Butterfly Beach

What I can say right now is that I am simultaneously grateful and gutted.  That in the end my greatest fear was I wouldn't do right by her and be by her side at the end and I was.  That in the end she took care of me as she always has by rapidly declining on Saturday and Sunday evening so that I took the flight home that my parents were already scheduled on Monday evening.  That she rallied and took in one more joyful trip thru the airport where she is everyone's emotional support dog for those moments of oohs and ahhs.  That Tuesday was one of the most beautiful days filled with love and peace that I couldn't wrap my head around she was gone. That my friends and family supported us in ways that was overwhelming in their care. 

In those final days I did something that with this illness I always feared I could not - I showed up.  It was just me and her - I did not delegate - I was strong for her as she has been for me.  That I had a plan with my vet and he was amazing so we were home, in my bed with her head on my lap as we have been for so many years.  In those final moments it was just you and me kid...we did it.  I am so very proud of us...I will miss you forever.

March 28, 2013 - November 20, 2018

My heart is big enough for this pain.

Saturday, November 17, 2018

How to Be Well

Sunday afternoon I was gathering the last few things to pack on my way back to Phoenix.  It had snowed the day before; I felt this was a fitting sign it was time to go.  After this early snowfall it is hard for people to understand that the pit in my stomach was as big as the Grand Canyon and my resolve not to get on the plane was growing deeper by the moment.  I started some nervous rituals such as looking at what jewelry I should pack and the gloom and doom if something happens all my jewelry goes down with me...thus none for my nieces.  I then chastise myself this is absolutely ridiculous as I put my grandma's engagement ring in and out and in and out and back out again of the case.  Then I thought I will put it on my finger and that will answer my neurosis - it didn't fit.  So of course it was coming with me.  The sliver of a gold band was not.  Then my attention turned to my slightly swollen fingers that the aforementioned ring didn't fit and the muffin that has arrived around my waist...and vanity blissfully helped my resolve to get on the 5pm flight.  My doctors are there, the weather will make it easier to walk outside, perhaps I can fit more comfortably into my jeans.

Then I just sat.  I sat in my bed and looked out onto the snow and I sobbed.  And I sobbed and I sobbed.  And then I grabbed my calendar all swollen eyes and fingers to pack and I turned the if a year ago I knew I would need a sign as it turned to December; be brave and I thought of the badge a friend had sent to me that hangs in my bathroom "I am brave."  I can do this again, I can do it because it is the best chance of next summer being more.  I reminded myself that feeling brave and being brave are two very different things.  It may not sound challenging to head to sunny AZ, but it is so much more than a flight.  It is a continuation of a fight; one every year feels harder to win.

I am tired of doing this trip -this trip means this illness is still in the driver's seat; and I'm so so tired of being a passenger.   Yet I'm so grateful that my body doesn't have to push through a winter.  Every six months I go through the same pro and con list and find the list where I am out ways the list where I am headed.  There is more to write on this but for the moment I will leave it at that.  I had pulled it together pretty well; knowing no matter the little voice inside my head it was a test not a sign and I would be traveling with my parents and Sophie on the 5pm flight from Milwaukee to Phoenix.  Period end of story.  And then my niece walked in - "no one told me you are leaving one tells me anything" For the love of God stab me through the heart twist and turn it and then hit me over the head.  Luckily resolve was set and I was able to comfort her rather than indulge myself.

She asked ten year old questions..."what are you doing for Thanksgiving"...oh honey nothing but that's no big deal I can't eat most of the good food anyways.  "Why can't you see a doctor here"...well soon maybe I can there is more information but these are the doctors that have helped me the most and the weather is hard on me....I said I was so sorry I thought she had understood last night that I was leaving...and then realized the suitcases were in the guest room and maybe leaving to her just meant she was heading home.  To be frank I was a bit surprised at her nonchalance attitude and even joked she was getting so grown up it was no big deal I was heading out.  A good reminder of what we say and others hear are often not the same thing.  I did the only thing I could I just held her tight, and tears silently went down my face and reminded her she would be too busy to even miss me.  This is not a vacation...this is hard.  It is hard to leave and it is hard to stay.

So here I am.  I have arrived.  My doctor has a new machine that is similar to the UV blood one that I have done before but more powerful.  That is the blood is removed and taken to the machine and honestly I don't know exactly what the fuck happens but its been helping her other patients that are living in limbo walking the tight rope and she is very hopeful it will push me to the other side.  The good news for me is that I am only going to her office twice a month so I do feel a bit like a snowbird on vacation.  So I am scheduling "outings" in as I would a doctor appointment and seeing what can be accomplished.

I have learned over the past few years of being relatively stable in this instability that pacing is my number one best treatment option.  Which is a really hard concept for those that are well to understand and very difficult to do without constantly questioning yourself could I do more - should I have done less.  I am trying to look at the next 6 months as a sabbatical - being isolated from so many friends and family there is a bit where I can breathe again.  I don't feel like I am constantly disappointing people or watching everyone live these full lives that mine use to parallel.  Being secluded in Phoenix often is less lonely or a different kind of lonely than being back home.

I gave Sophie a bath tonight.  It was a wonderful feeling that I was able to take care of her in that way.  She normally isn't a huge fan, but she was quite docile I hope because her skin is a bit sore and it felt good.  However the reality is that she is more fragile.  Oh don't get me wrong she is feisty - ask anyone besides me that dares to try and pick her up.  Our time is limited that is not in question - and I can only hope that its some mystical sign that she will leave me when I am well.  It's fanciful thinking but one I've thought of a lot; this past summer I have needed to care for the ever present companion.  She is tired; and I only too well can empathize.  Love.  I had intended this post to be completely different than what came to be...til next time. xo xo

My favorite book that helped me cope with this crazy illness is Toni Bernhard's How to Be Sick.  I am just praying that soon I will re learn how to be well.  How to Be Sick 2nd Edition

xo xo 

Disqus for Festzeit