Thursday, July 31, 2014


I gave her a drink of her berry flavored G2 Gator-aid.  It’s not necessarily her drink of choice, but it is one she tolerates to keep me placated. I tilted the bottle up at her mouth and a little bit leaked out of the bottom and dripped down her chin and trailed to her neck.  I dabbed at it with a towel.

“I’m sorry, “I said, “I got in too big a hurry.”

As always, the woman whose new normal is unparalled levels of tolerance says, “That’s okay.”

Playfully I say, “So you forgive me?  You won’t hold a grudge?”

“You have to remember to hold a grudge.”

There it was, once again, my wife, she of two major life altering strokes, she who has suffered major brain trauma, tells me what’s real, not just for her, but for me. 

“You have to remember to hold a grudge.”

I’m not a big grudge holder, partly because I don’t remember some stuff, partly because I manage to get over fluff stuff, and partly because I’m a hell of a guy, yeah right.  Truthfully, I do have some grudges, some over real stuff and some that are stupid.  I should try to forget.

Yes, there are a couple of people out there that I’m still a teeny tiny bit ticked off at over slights to me or my family, slights they probably never knew existed, slights that still stick in my craw and make me want to remember and carry around a rock in my shoe so I will remember and carry a grudge like some self-righteous badge of defiance and strength.  

Brilliant, ain’t it?

Marty is the one who should hold some grudges, grudges for all of the indignities she has been forced to suffer, for all of the painful procedures she has endured, for all of the times people have looked past her because she was sitting in a wheelchair.  She should carry a mountain of grudges, but mostly she can’t remember the bad stuff.

“You have to remember to hold a grudge.”

When she was in the ICU after the aneurysm she lay comatose in her bed for six weeks, rarely responding to anything.  They did stuff to her, they poked her, they prodded her, and they ran tubes in her and caused her great discomfort.  She was terribly sick and I can only imagine how horrible it would have been to feel, to have been aware.  The doctors said she wouldn’t remember a thing.  She didn’t, I’m thankful.

Marty does remember some stuff; she particularly remembers the good stuff.  She remembers the grand kids, she remembers their names and when they have been here, she remembers the visits from family and friends (maybe not the details), she is aware of and remembers important moments.  

Bless her she has forgotten most of the bad things and bad times we have had before the strokes and after.  She has forgotten my impatience, my slights, my errors and my sins, and because she has forgotten, she has forgiven.   In her own way, in the way of the new normal, she has forgiven me, she has forgiven others for the countless miscues in life, she doesn’t remember and thus she holds no grudges. 

It’s simple really; you can’t really hold a grudge when you move past the past, when you forgive, when you really no longer care about the small stuff that stacks up in your head and heart. Okay, maybe it's not that simple.

Marty used to have an amazing memory, it was scary good.  She doesn’t have a great short term memory any more; the strokes took that skill away.  But, that’s sort of okay; I like to think she saves her brain cells for the best parts, the things that make her smile.

Sunday, July 20, 2014

The Only Choice

I know exactly why I do it and it’s not because I’m a saint or a particularly self-effacing guy.  I’m not patient or generous enough to qualify for sanctification and I have a very healthy ego and really like to have my way in most everything.  

I do it, because for me, there was never really a choice, for me, caring for Marty became my sole focus because  doing anything else was failing at my most fundamental commitment, caring for the one I love the most.  

As with many daunting tasks in life it was less about choosing and more about just simply doing, not thinking, not analyzing, just doing one task, one procedure, one day at a time.

I didn’t choose the job of caregiver.  Marty didn’t choose the job of care receiver.  Shit happens, strokes happened and what happened gave no room for assessing, developing options and then choosing one of said options.  There was one choice, do what I could, develop skills I didn’t have, plan and take care of my wife.

Yes, the whole promise thing, you know the sickness and in health thing is a huge part of it.  It turns out that was a real live serious kind of commitment, not just some stuff you say at a wedding that you may or may not remember saying.  Who knew?

Marty and I joke for time to time that if the roles were reversed she would have chosen to slap my happy ass (her words) in the nursing home.  She grins and laughs and says, “I’d do it in a New York minute, I would put you away and take the rest of the money and play”.  

I’m not sure she got the rhyme.

I know different.  She is really the one who taught me about taking care of your own; she is the one who modeled caring for your family when they were broken.  She saw it from her mother, she saw it from her father as he cared for her mother and she modeled it with our children when they were sick or simply heart sick.  

If the roles were reversed I would have sat my happy ass at home where she would have clawed and scratched to take care of me. 
I’m not trying to speak for other people in the care giving business.  I’m sure there are many out there that sat down and made a conscious decision to give part of their life to caring for someone else.  There are millions of young and old alike who take care of hurt or ill children, parents or spouses.  We are legion and whether you admit it or not you will be confronted with the issue of either giving care or receiving it at some point in time. 

People live longer, we survive more traumas, we fight past more deadly infections, we live with debilitating events more frequently, we know how to extend life.  I’m not sure we have figured out how to care for and help people to have that extension of life be a quality extension.  It takes someone’s time, money, heart and effort to step forward and wrap themselves around the broken.

The point is that stuff happens to us all and how we immediately react to that stuff probably says less about our fortitude and righteousness than we would like.  Some people step up, not because they are somehow inherently more caring or just better humans, they do it because there are no other options, there are no other choices. 

I’m not better than, I’m no saint and it gives me the willies just thinking about how I drag down the curve for really altruistic people when I’m compared to them.

I love my wife, today more than ever.  I made a promise and it matters to me today more than it did yesterday.  Personally, I work better if there are no choices and if I only look at today and choose to care for Marty today.  

It’s not much of a choice when it’s the only thing you can do.

Sunday, July 13, 2014

Okay is Really Very Good

It’s been about six months.  I hate to put the bad voodoo on us but it’s been about six months since we have seen the inside of a Providence Hospital room.  

For us, for the chronically ill, this is a big thing.  Not doing the hospital for any length of time is freeing, it’s cause for celebration.

I know, some of you have never seen the inside of a hospital and the only way you would is if death was nigh, but we are too frequent flyers and dance the happy dance when we can string consecutive months of hospital abstinence together.

It takes about six months of good health for me to start to breath deep again, to sort of relax; to let the anxiety meter drop out of the red zone.   Personally, when things are good I quit looking at every blood pressure reading taken and I quit watching Marty’s every yawn, every twitch, and every shiver.  I step off the knife’s edge.

That doesn’t mean I’m not on guard duty.  I still worry about Marty being fatigued and if that’s some sort of indicator.  My ears still perk up to a cough or a choke or a complaint of pain.  I’m just not hyper about….okay….I’m just not AS hyper about it.

Marty was last in the hospital at the end of January for a bad bladder infection.  After that we started a prophylactic dose of a narrow spectrum antibiotic often used for bladder infections.  Since we started that daily regimen we have had nothing but clean pee, can I have an amen for clean pee.

We did make one late evening trip to the ER for what turned out to be an upper respiratory infection we could manage from the house with the assistance of Great and Wise and his fab crew.  We caught it early, hit it with additional big time antibiotics and there you go….home recovery, no hospital stay.

We do the hospital dance pretty well, the fact that you can adapt to almost anything if you do it enough or see it as an occasional necessity is a testament to human adaptation.  Hospitals are not normal places.   

Prior to Marty’s first stroke hospital stays were for monumental kind of illnesses and strictly reserved for the very very sick or injured.  I guess that still applies because when we go to the hospital Marty is pretty sick. 

You’re missing my point…..mostly because I’m meandering.  The point being…Marty is doing really well.  She seems to feel good, she does get tired pretty easy but I think that’s because it’s hard to continually recover and live life when you have had a traumatic brain injury.  She needs really good rest and sleep and sometimes that doesn’t happen.

When Marty is doing well, when she is feeling good, when she laughs a lot, when she makes the occasionally sarcastic remark, life seems very normal, even, dare I say, good.  Am I allowed to feel good in this really weird existence?  Do I have to feel guilty when I do?  Naw…

We were about to get out and run some errands the other day and I caught myself feeling good about our life.  It was quiet, we were going to run normal errands, save the fact that I had to move Marty from her wheelchair to our car, it felt like what you are supposed to feel like when you have retired and don’t have to worry about stuff.  

It was a moment of contentment followed by the kind of mundane errands that life requires of normal people.   I’m okay with mundane.

Friday, July 4, 2014


Marty will be 60 this year on August 23.  Ten years ago 60 seemed a sure thing.  Nine years ago, after the first stroke 60 seemed possible but for the first time I had doubts.  Eight years ago after the 2nd stroke, 60, for Marty, seemed doubtful.  

Marty will hit 60 in August and we are going to have a party.  We are going to have a big party to celebrate something amazing, a life continued.  I asked Marty if she wanted a party, she said she didn’t, I said too bad, this is a big deal.  She is on board now and helping with the guest list.

I’m not a party planner but I have picked a date (real hard in that Marty’s birthday lands on a Saturday), a venue, some food and I’m working on an invite list….you’re all invited….all of you.

I’m putting together a pictorial history of Marty for this thing and I’ve had a big time going through old and new photos.  I apparently used to be thinner.  The funny thing is I never thought it so, I always thought I was a bit chunky.  Not so.

Marty never thought she was very pretty but in looking at our photos she was wrong.  I look at all of these old pictures and I see who she once was and when stacked together with current photos you see the evolution, you clearly see the youth, the beauty, the years and the disease.

There’s the picture of the two year old Marty which looks remarkably like our two year old grand-daughter Emma.  There’s the picture of 2nd grade Marty with the pixie hair cut and the 18 year old hot Marty with the short skirt.  The picture of Marty with her hair pulled back wearing my gray sweater sitting in front of a pile of books really takes me back to when we met.

The picture of Marty with a three day old Matt just blew me away.  I forgot about the photograph and I’m not sure I realized how beautiful it was.  There’s a picture of Marty with a one year Erin, a picture of Marty with Becky, a best friend,  in the desert outside of Las Vegas and several pictures of her with her chin resting in her right hand, a gesture that is and will always be a quintessential  Marty look.
There is a picture of Marty standing between our children with very short hair, with very little make-up; a scant five months after the first stroke almost took her life.  But, there she is standing there victoriously.  It shows a completely different life from the picture taken of her four months earlier, standing, a full head of hair, standing in the kitchen of friends, seemingly healthy and happy without any thought of what was to come.  Our lives shifted massively in the eight short months between photographs.

There are the whole family pictures, the holiday pictures, the snow skiing pictures, pictures in Spain, in London, with babies, with grandparents, all of the images running in a string of time.  All of them separately show a woman, all of them together show a story, a story of a life well lived, a story of a life well loved, a story of a full life, but most importantly a story that continues in spite of life itself.

I see in the pictures that separate what was normal and what is normal today.  I see in the pictures the fragility of life, I see in the pictures a woman who never thought she was very pretty but was and is actually beautiful in so many ways.   

It’s really a hell of a story, August 23rd, be there.