Friday, March 22, 2013

Three Kinds of Love

“There are three kinds of love,” she said as she was holding court at our supper table.

Marty was listening and eating a little at a time; I was watching and listening to Renea, the caregiver who was holding court.  I was listening, mostly, partly I was listening for my opportunity to weigh in on the discussion; trying to think of what you are going to say really limits understanding, but not in this case.

 “There are three kinds of love.  The I’m in love with you “if” kind, where someone loves you if you do something, there’s the I’m in love with you “because” love, “because” you do something for me, and there’s the I love you “ in spite of” what you do kind of love.”

I stopped, started and stopped again and reserved comment while I played her words in my brain.  In a very simple, somewhat skeptical take on love she had described the romantic feeling, probably too simply, but fairly accurately. 

Part of what I heard her say reflected the cynicism of someone who has been loved poorly, part of what I heard her say reflected reality, part of what I heard her say were my own words coming back to me, a recognition that the people we love, the good people we love will invariably fail us from time to time.  Expecting the people I love to fail is my own brand of cynicism.

I know it’s too simple but it applies, it applies to my own life.  I didn’t fall in love with Marty as part of a bargain, an “if” kind of love.  Yes, there was a “because” factor, not “because” she did things for me or to me or because she had things.  I loved her “because” she was smart, funny, attractive and bold.  I have stayed in love with Marty “in spite of” a whole lot.  I suspect she can rightfully say the very same thing.  

We succeeded in our marriage “in spite of” what we said and did to each other.  I love Marty “in spite of” the strokes.  I love Marty “in spite of” all of the things we have gone through, all of the years of growing up, all of the years of maturing, all of the lunacy of a long relationship.

Bear with me because it will all make sense.

Yesterday I barked, I barked for good reason, I barked out of emotional fatigue and frustration, a very reasonable reaction.  The constancy of care giving, of worrying, of just doing everything gets to me some times and I just wear out emotionally.  Unfortunately the result is jerkishness on my part and guess who bears the brunt of that jerkishness?  Marty Jean, she’s the closest and safest target.

This time Marty barked back, bless her soul.  As she lay on her back in her bed she explained in very precise words that her end of this whole stroke deal pretty well sucked too and that maybe she got the worst end of the deal.

I was a little taken aback by the flash of the old Marty and I took a breath and started to rationalize my behavior and explain to her I wasn’t just mad at her and I wasn’t trying to take out my anger out on her; all of the words vaguely familiar from years of previous arguments.

I put my left arm under her shoulders and my right arm under her knees and I lifted and twisted her to a sitting position on the side of her bed.  As I put my arms under hers to help her stand she looked at me and said, “Well we need to hire someone to take this shit.”

“What shit?” I asked.

“Your frustration, hire someone for you to be mad at, I don’t need this shit.”

“We can’t hire someone for me to get mad at, no one would do that.”

She paused as I pulled her up from the bed to standing and as I was lifting her left leg and pivoting her on her right to sit in her wheel chair she said, “Sure we can, there are a lot of people who are at home putting up with the same thing for free, someone will do it for a buck.”

“Yeah right.”

I guess Marty loves me too and maybe, just maybe, Marty has to love me in “spite of” the shit I dish out from time to time not “because” I help take care of her.

By the way, if you are interested in the position of shit taker just let me know, there are no real benefits and it doesn’t pay very well but you do get to hang with Marty and that’s sort of fun.

Wednesday, March 13, 2013

Who to Blame

She didn’t do it.  It wasn’t really her fault, really, I’m serious. 

God didn’t do it.  She didn’t have strokes because God wanted that, really, I can’t believe that.

We have to learn to quit blaming the broken, quit blaming God for the brokenness.  Some things just are.

It’s a pretty natural condition, assigning blame.  I call it natural because it’s what I naturally want to do and I am Joe Average so I know and understand everything.  When Marty had her first stroke I badly wanted to blame someone, I wanted to hold someone accountable, I just couldn’t find the right person.

When Marty had her second stroke I was still looking, looking for someone or something to blame.  It just seemed natural that someone or something did this to her and I wanted to be angry and shout at the person or entity responsible.  I just couldn’t yell at the right person, it would have helped if knew who that was.

There is the crowd that wants to blame this on Marty.  She has to have some accountability and aren’t we all about the accountability.  She was overweight, she smoked, she didn’t exercise and she had a family history.  I thought about blaming her for this whole mess, it made sense and it would be easy because she feels guilty about the burden she has cast upon her family.  She feels like she is to blame so why not just blame her.

The only problem with that theory is that there are lots and lots of people walking around who made a lot worse life style choice than Marty and they have not been afflicted with this disease or any other disease.  I see them every day, I know them, I know their history, I wonder every day why not them instead of Marty.  There is no answer.

Is Marty to blame?  Maybe, partly, I suspect the strokes would have come regardless of her life style choices.  The ruptured aneurysm that almost killed her was congenital.  That’s not her fault.
There’s the fundamentalist religious crowd that wants to blame Marty and her sins.  Their view is this is God’s wrath visited upon an abject sinner.  She made mistakes in God’s eyes; she has to pay God’s fee for the mistakes so God takes those things she most prizes as payment.  I’m not sure I buy this theory of blame either, aren’t we all abject sinners?

Maybe it’s my fault.  If I hadn’t worked so much so far away so much of the time, maybe I could have made a difference somehow.  Maybe it’s my sins we are both paying for now, maybe God smote Marty to teach me a lesson.

Then there’s the whole test your faith Book of Job kind of thing.  If this is a test of my faith, I’m losing, if it’s testing my loyalty, I’m doing okay, if it’s to teach Marty and I a greater lesson, I ain’t seeing the point.

There are those that will say this is part of God’s entire big plan for Marty and me, that everything happens for a reason and some day we will see the reason.  Maybe, I have a hard time with that.  I’m a pretty big believer in free will and I just don’t believe in a God that jacks with you like that. 

I’m sorry to all of you who might be bothered by this view but I don’t think God’s plans included Marty being stricken like this.  I believe we have all been touched by God for our very existence but after that, I frankly think God has a much more Laissze-Faire approach to his creation.  God kicks the rock down the hill and then watches it roll, God lets us live life.

What I believe is… we break…. and to quote Gaga, “We are born this way”.  We are created a miracle, a delicate, finely tuned miracle built with remarkable strength and fragility, we break. 
It’s like the old Mouse Trap game, the game where you built a series of triggers, like balls rolling into a basket, to finally drop the trap on the mouse; if one thing in the chain is missing, if one element is out of place, the trap wouldn’t fall and catch the mouse.  In this miracle of a human body we break if the smallest of things gets out of sync with the rest of our body.  We are breakable, we were created breakable, God doesn’t have to proactively break us, it just happens.

None of this means we can abdicate our responsibility in life that we shouldn’t take care of ourselves and those around us.  I understand the role we play in breaking ourselves and others.  I understand it is natural and human to want to lay blame and fix accountability in an effort to ensure some things never happen again.  

We can’t forget the Newtowns, the Auroras, the Katrinas, the Iraq war, 9/11 and all of the other more minor issues that fall on all of us.  We must learn, that’s part of the process too.  I’m just saying that sometimes we should spend more time dealing and understanding the aftermath of the event than blaming the victims.

The right Reverend Leslie of FPC confessed to God the other day in her sermon she needed to quit trying to figure out why bad things happened, why blackness befell good people.  I agree.  It’s not natural to not wonder, but there are no real answers.  Sometimes stuff just happens.

Sunday, March 10, 2013

It's More than Inappropriate

“Ma’am, what you did, because you didn’t want to walk an extra ten steps from the parking space right over there, is make a hard life just a little harder.”  As we drove out of the parking lot, it flashed through my mind, that’s what I really wished I had said.

It was sprinkling, just enough moisture in the air to get your hair damp if you stood out in the open,  as we turned down the open walkway from the hair salon.  Basey’s salon, where we both get our hair cut, is in a small boutique shopping center consisting of three or four hair salons and a couple of shops.  The center is square and small with shops in each corner of the square so anywhere you park you are never more than a few steps to one of the boutiques.

As we turned the corner I saw a car with a handicapped placard hanging from the rear view mirror parked right beside our van.  It was parked in the yellow cross-hatched part of the handicap parking spot, a spot where you are not supposed to park anything.  The car blocked wheelchair ramp and prevented us from lowering Marty’s wheelchair ramp. 

Renee B, our caregiver of the day, and Marty stood under the canopy of the shopping center as I pulled the van out in the middle of the parking lot all the while mumbling about the idiot that blocked us.  I then walked over to Marty’s wheelchair and carefully lifted the back of her chair and gently let her down off the three inch curb.  Renee then rolled Marty in the afternoon mist over to the waiting van.

About the time I started raising the lift with Marty on it I saw a woman with a couple of bags walking down the breeze way from the shops, walking where we had just been.  She saw us and I could tell she hesitated just a moment before walking to her car.  She was busted, she was watching the results of her cavalier parking and she knew what was happening.  Unfortunately for her she knew I had seen her and it was too late to beat a retreat.

Personally, I’m a bit conflict averse, but there are times I’m not and as I stood in the wet air, in the middle of the parking lot putting my wife in our van I just couldn’t help it.  I looked at the lady as she kind of tip toed toward the offending car. 

“Is that your car?” I asked.


“I don’t meant to sound harsh ma’am (notice the ma’am, I’m born and bred Southern), but you blocked us in and you blocked the wheelchair ramp.  You are parked illegally.”

She looked at Marty as she was sitting in her chair and rising into the van and said, “I’m so sorry, you should have come and got me.”

I was really trying not to be harsh and aggressive, I said, “Ma’am I don’t know who you are and where you were, how in the….”  I caught myself.  “There’s no way I would know where you were.”  I bent over and started hooking up Marty’s chair in the van so it wouldn’t slide around.
She unlocked her car and started to get in.  “I’m sorry.”

I turned and looked at her and said simply and stupidly, “It’s just inappropriate.”  Yes, that’s what I said.  Of all of the pithy, nasty, biting comments I could have said, I chose, “It’s just inappropriate.”  I’m a killer.

She looked at me and I could see she was getting a little ticked.  “I’ve said I’m sorry, I’m not saying it again.”

I said, “Yes you did, yes you did,” and turned and fastened the last hook to Marty’s chair as the lady slammed her car door, pulled out and drove around our van.  

I checked with Marty to make sure I hadn’t made her too anxious, I checked with Renee to make sure she wasn’t freaked out by my confronting the lady.  I was agitated but I had not been overtly rude, I had “Mamed” her to alleviate the sharpness I felt and I had turned away, accepting her apology, sort of.  

Before disability came to roost in our lives I never once thought about living with a disability, I never gave a handicapped parking spot a second thought, I never paid any mind to a wheelchair ramp or how doors were positioned or how wide aisles were.   Now I see things differently and I get my hackles up when people make life harder by not playing by very simple rules.

The rules really are simple and require a level of decency that is not that hard to summon:  don’t park in a handicap spot unless you really need to, even if you have a placard or a license plate, don’t park too close to a vehicle with a wheelchair lift, they are easy to see, don’t park in those yellow marked areas and don’t park in front of a wheelchair ramp, even if you are just running a quick errand.   

Remember, when you are breaking the rules for your convenience you are trapping people who already feel trapped and confined.  

I really wish I had explained to the lady that getting around in a wheelchair is hard; handicap parking places doesn’t make anything easy, just a little less hard.  I wish I had told her that we happily deal with the harder every day.  It's not great, but it’s okay that “doing things” is more difficult, it’s okay that it takes longer for us to do things and to go places.  I wish I had simply said, it’s hard enough, please don’t make it harder.

Tuesday, March 5, 2013

Defining the Anxiety

It was a little after high noon when Great and Wise stepped into the room.  He looked at Marty and said, “You look a lot better than I expected.”  That was Friday a week ago.

That Thursday afternoon Marty and I took a ride as we often do.  She had refused an outing to replace her glasses saying, “It takes too long and I have to try on all of those glasses.  It’s a pain.”  Maybe I missed something when she didn’t want to go get glasses.

That night, Thursday night, all seemed well, she bathed, she laughed, she coughed.  At bedtime things seemed a bit off.  It’s really hard to describe but her body was doing things she didn’t want it to do.  She was stretching in a peculiar way, just for a couple of seconds, her body contracting while she made a yawning noise.  

It was enough for someone with a Doctor of Marty to know things just weren’t right.  I’ve seen it before; her body’s reactions were a nebulous indicator of something different, something worse.
Sleep wasn’t easy for me that, I knew something was off.  I got up a couple of times to check and Marty was sleeping comfortably.  By the time the sun started to rise I was up and had already decided we were going to take Marty to our friendly neighborhood emergency room.  Things just felt off and I don’t do off when I can keep from it.

Erica, Marty’s a.m. caregiver, got her dressed and did her vitals.  Her blood pressure was now uncomfortably low and she clearly didn’t feel very good, though she would never admit it, the hospital is not high on her list of places to visit.  The hypotension confirmed my earlier decision to take the ride to a higher authority.

We made a Presbyterian type trip to the hospital, meaning we got ready, “decently and in order”.  We gathered our supplies, documentation, got our “go” bag, got cleaned up and went to the emergency room where they immediately moved us to triage.  When the triage nurse saw her blood pressure was 90/55 they immediately rolled her back to an exam room with Erica and I shuffling behind.

Within in minutes they were hooking Marty to an IV for fluids and blood tests, had her on supplemental oxygen and communicated her vitals and medical history to the ER doctor.  Within 2 hours we had seen her blood pressure move up from 85/55 to high 90s/60s, we had determined she did not have pneumonia, we had ruled out a UTI (I would have lost a bet on that one), but had discovered she had a whale of an infection as indicated by a very high white blood count.

I think it always kind of freaks the Docs out when I ask a lot of questions and want details and numbers.  I want to know what her white count is, not just that it’s normal or not, I want to know what her Sodium levels are, not simply a recitation of everything seems normal.  I’ve been there, we’ve been there, I know, the numbers give me data, the data gives me knowledge and the knowledge keeps me calm.

Ultimately the diagnosis, like so many diagnoses, was vague:  upper respiratory, sinus, some bad infection leading to systemic inflammatory response syndrome (SIRS) or sepsis.  Now there are several stages to sepsis ranging from pretty sick to really damn sick.  We were early enough to get to pretty sick.  Had we waited longer to seek help  we would have rapidly made it to really damn sick.  This is my nightmare.

When Great and Wise stuck his head at noon he looked at Marty and told her there were too many unknowns and we needed to stay in the hospital.   I agreed, like that made a difference, Marty disagreed, that didn’t make a difference either, we were destined for a multi-day hospital stay.
She really did look good, her color was good, her demeanor was good, but her blood pressure was scary low, all of the diagnostic tools indicated she was really pretty sick.  Great and Wise also said he was leaving town for a much needed respite to go see his family.  I said yeah and boo at the same time.  Yeah for his much needed to time away and boo for us to be relegated to the ubiquitous hospitalist.  

Great and Wise is the only Family Practice Doc I know that follows his patients in the hospital and we missed him.  I personally think he leaves every now and then to make us appreciate what a good medical deal we have.  He succeeded, we love us some Great and Wise.

Marty spent the next four days in the hospital getting fluids and IV antibiotics.  God bless the people who discovered penicillin and the people who expanded the use.  I know they are often over used, I also know they have saved millions upon millions and I really know they have saved Marty more than once.

Marty was not happy to be there, she really doesn’t like it at all for a lot of reasons.  If you ask her why she doesn’t want to be there you get the usual loss of control, like to be at home, poked and prodded too much answer.  She told me right after the delicate and demeaning  in-and-out catheterization to obtain a urine sample, “You wouldn’t believe what they did to me down there.”  Yeah, I know, I was there.

The hospital ain’t for sissies or the easily embarrassed.  It is the place where, if you are lucky, watch, wash, and follow directions you can leave better than you arrived.  That’s what we did last Monday.  We came home.

She’s better today than she was yesterday, she’s much better than she was when we drove to the emergency room in the cold early morning, she’s not as good as she will be with more time.  She hates going to the hospital, she annoyed that I made her go, she was a bit perturbed while there and I think she’s still just a tad bit ticked about the whole thing.  

She also knows it was the best and only thing to do.  I know it was the best and only thing to do.  This could have been so much worse, if we had waited, it would have been worse.  I worry that some day we will not see the signs in time.  It’s what keeps me up at night; this is what defines my anxiety.