Wednesday, March 30, 2011

Unintended Consequences

I read every blog I write to Marty, preferably before they are posted. I once published a blog before I read it to her and she said, “What if I don’t like it?” My response, of course, “I’ll delete right now if that’s your wish.” Fortunately, after I read it to her she let it stand.

As an avowed approval junkie I continually ask if the she likes what I am writing, if it’s okay that I write about her and our life, if it makes her feel good, or if it makes her feel bad. The other day we had the same sort of conversation, “How do you like this? How does it make you feel? Is it alright with you if I keep doing this?”

The short, but not quite so simple answer, “Yes, I think it’s good for you.”

It has taken me a while to figure it out but that is part of why I do this, because, “it’s good for me.”

I started “MartyTalks” as a means of chronicling our journey, as a means of keeping friends and family up to date on Marty’s progress, as a way to introduce the Marty I have always known to people who will only know the new Marty. I’ve always been proud of what Marty has accomplished in her life and she challenged me and others who have known her to live better and different lives. I really wanted people to remember who she was in her old life and be amazed at the survivor she had to become.

“MartyTalks” started out as a somewhat selfless act.

The result has not been so selfless. I have found I genuinely enjoy writing about our life and our journey. I have found while giving others insight into the life of the chronically ill it has given me a new and deeper understanding of both of us. I have discovered I enjoy writing and crafting our stories, I have found I love this way of communicating.

Amazingly, through the miracle of electronic communication I have found some new friends, other people who are using the internet to find themselves. I now count as friends a poet from Australia, some wild women from Canada, a flute maker from Kentucky, a couple of very talented women who understand loss and a genuinely nice fellow from somewhere in the Midwest; all people I would never have met in the normal course of my life. And I have come to know old friends even better, finding out things about them, pieces of their lives they have shared with me I would never have known. By unveiling part of our life others have opened the curtains to their own lives.

The biggest revelation for me is I have started to become reacquainted to myself. In all of my years working in the corporate world and forcing myself to be someone else for something else I had lost a bit of who I was, who I wanted to be. It is remarkable that by caring for someone else, by writing of that journey I figured out I was lost and started a whole new process of self discovery. As I write about Marty she continues to teach me more about myself.

I think I have become addicted to the whole process, telling people about Marty, writing about what she has gone through and what she does on a day to day basis. And, I love the feedback, I love that people read about us and comment. How narcissistic is that? It feels good, it’s reassuring to know there are people, friends new and old, who are reading, following our journey and speaking back to us. Marty revels in the feedback, I read her all of the comments. I think they give validation to her, they provide value for her, she feels like she is still contributing in some way.

I do write this stuff to be read, I want people to read it, to feel it, to better understand the miracle of our life, but to tell the truth, after the discovery of what telling our story does for both Marty and me, I would write it anyway.

I know there are some who run across this blog and find it too maudlin, too sweet, too melancholy, too personal, too something. I think I am okay with that because as it turns out the biggest beneficiary of this whole process has been me. It’s just like Marty said, “It’s good for you.” She knows.

Monday, March 21, 2011

Chasing the Doctorate of Marty

My post graduate study continues in my pursuit of the elusive Doctor of Marty degree. I have been studying, doing my clinicals and taking both written and oral exams for a long time now and apparently I still haven’t completed my class work because Marty has decided to add another course.

We have now expanded our lexicon to include words like vertebroplasty, Forteo, bisphosphonates, bone density, T score and of course osteoporosis. For Marty, bone loss is not that surprising given the amount of steroids she has taken, her hysterectomy and thyroid issues, not to mention the little matter of the strokes. The fact she broke her arm a year ago without falling or that she has developed compression fractures in the lumbar part of her spine all point to significant bone degradation, thus we now embark on a new journey of which I know little.

About two months ago Marty started to complain about lower back pain when we moved her or she moved from lying to sitting. She would complain loudly, “Oh, oh, oh, oh,” a sign of real pain in that she does not complain over minor aches. Given the location of the pain and her past bouts with urinary tract infections we immediately went into infection mode. Testing proved there was no infection. Yeah.

The next thought was simple muscle strain. When we move Marty anywhere there is a certain amount of twisting and turning which could easily strain the muscles of the lower back. We did drugs, ice, heat, and rest and after about two weeks we still got, “Oh, oh, oh, oh” when we moved her and her blood pressure was continually elevated, another sign of real pain. A trip to Great and Wise was next.

He immediately brought up the idea of compression fractures but sounded reasonably confident some relief could be provided by a procedure called vertebroplasty. One x-ray, one CAT scan later we were checking into good ol' Providence for a minor procedure of having biopsy needles inserted into Marty’s back so they could inject glue into the compression fracture in the L2 vertebrae of her spine. Think filling a crushed drink can with goo. Oh yeah, a minor procedure is when they do it to someone else, if you do it to me it’s a big damn deal.

Marty had three compression fractures in the lumbar portion of her spine. Those breaks along with the broken arm she suffered a year ago indicate significant bone deterioration. All of her doctors have directed us to an injectable drug call Forteo. Being the internet maven that I am I have read all of the scoop on this drug, in particular the part about bone cancer and other side effects like joint pain, weakness and nausea just to name a few. Making the decision to start using this medicine is not an easy choice. It is just one more in a series of decisions I would prefer to never have to consider.

I lay out the choices to Marty, I tell her what I know, which is at best surface knowledge. I want her to weigh in on this decision. Taking Forteo is not easy. It is expensive, requires daily injections for two years and is complicated to maintain and purchase, and it has the whole caused bone tumors in rats’ thing going for it. It does grow bone though and the hope would be that it would strengthen Marty’s bones so maybe we can avoid another calamitous fracture such as a leg or even a hip.

I really hate deciding this kind of stuff. This is just one part of care giving that particularly sucks. This is where it would be much easier just to move on, not do anything and let the chips fall where they may, but that option pretty well bites. Marty was always the go to person for medical decisions in our family, she led on those hard decisions. My personality really doesn’t fit well guiding this decision process.

Marty tries to help but I know she is ultimately swayed by what I say or don’t say and will always follow my lead. I simply can’t abdicate; it’s not an option in our relationship today. It really falls to me to talk with her doctor’s, whom we trust, to research and read and then weigh the risks versus the rewards.

I am always biased to some sort of purposeful action, in this case the risk of doing nothing is simply not acceptable, we need to deal with the risks of taking the drug, we need to accommodate the expense and the inconvenience of the drug in hopes of forestalling future and even more devastating bone fractures.

So, once again I find myself prowling the bowels and recesses of the internet trying to increase my chances of earning the Doctor of Marty degree. Being the teacher suck up that I am I’m always trying to know more and do more for approval from the grand master Marty. She has high expectations, but she’s really pretty easy, she’ll let you cheat if you kiss her on the cheek.

Wednesday, March 16, 2011

A Heartfelt Confession

I had an epiphany, the epiphany led to dangerous self reflection and the result is this confession. As a man, as a son, as a husband, this is where I come clean, where I purge and unfortunately rat out my gender compatriots. To the wives of the world I lay prostrate, to the husbands, I’m sorry I have laid bare one of our many dark secrets.
Fresh strawberries, light yogurt, crushed ice, skim milk and Splenda blended to just the right consistency is a great topping to an evening of television fun. Like the wild man that I am I started depositing the above ingredients into our blender, without measuring anything. I then scraped out the last of the yogurt from the container and dropped the spoon into the blender to get all of that yummy stuff off. I sliced the strawberries, ate one, sliced a couple more for good measure and took the container to the blender base to blend. As soon as I hit high on the blender I remembered the spoon because of the god awful racket coming from what was left of my blender.

The liquid that was to be a cool, sweet refreshing smoothie started seeping out of the bottom of the blender all over the counter top. Being the guy I am I didn’t immediately understand what I had done and lifted the blender from the motor and more liquid quickly flowed from the now broken blender and started to run down the front of the cabinets and onto the dogs water and food dishes. Maggie the dauschund thought that was pretty cool as she lapped up the yogurt and milk. I quickly moved the dripping blender to the sink, dripping the goodness from the wounded appliance on the floor, on my feet and in the sink.

This is where the epiphany and ensuing self appraisal began. I grabbed a bar towel and started to wipe up my mess, which was a pretty impressive mess at this point. I had milky, yogurty, strawberry liquid everywhere and I tentatively dabbed, then mopped with the lone bar towel. I saw where I had managed to get the goo on front of the cabinets and on Maggie’s dishes and took a half-hearted swipe at the mess. Clearly there were still remnants of my mistake on the floor, on the cabinet doors, on the busted blender base but I started to move on anyway leaving it for someone else.

Herein lies the confession…. my name is Marty’s Husband and I’m clearly a half-ass cleaner. I have gone through life hitting the big spots, the obvious puddle on the counter, while blowing off the small spots, the sticky stuff, the stuff on the floor and the cabinet doors and the crevices of the blender. I was struck by my own dereliction of duty to my house.

When Marty and I roamed and ran the house together I used to take great pride in doing the dishes after supper, the easy dishes. I almost always, make that always, left my bride with the worst pan, the caked on pan, the burned food on the bottom pot, the pan too big for the dishwasher. I took credit for the dishes done, but I had dear Marty cleaning behind me.

It’s wasn’t just cleaning. I could always count on Marty to move the clothes from the washer to the dryer when I “forgot” or pick up that little piece of paper I dropped on the floor or put water in the dog’s water bowl or simply make some logistical but mundane decisions. Having that partner in your life who helps pick up, clean up and finish up after you becomes so habit forming you begin to count on it. Until….

Until the strokes changed everything and our roles in our marriage simply reversed.

Until the one who always completed your sentences can’t follow behind you anymore and all of the sudden you are standing in the middle of a puddle of goo and there is no one to clean it except you.

Until you figure out that the toothpick on the floor will stay on the floor until you either step on it or pick it up because you are it, there is no one following you to help, to finish, completing the task.

Until you recognize and accept the fact you alone are responsible for your muck.

As I stood in the middle of the kitchen, resigned to my task, coming to grips with my own shortcomings over the years I could picture Marty coming behind me with a warm wet towel and wiping the fragments of my mistake from the cabinet doors, muttering and cursing the whole time, saying to herself but loud enough for me to hear, “It would have been easier to do it right the first time.”

My epiphany, I miss the reality where I knew someone was behind me all of the time, I miss being able to have Marty have my back. My confession, I’m a closet slob, as are many of the men I know, but this time I simply wet the bar towel and began to clean thinking about my epiphany.

Sunday, March 13, 2011

A World of Crotches and Butts

When I was a kid I would climb the big sycamore tree in front of our house. I would wear my plastic fighter pilot’s helmet and sling my trusty BB gun over my shoulder and climb as high as I could to protect my village from the Godless commies that might be creeping up to do dastardly things. I liked being up high, above the fray, above the mundane. I liked the clear unobstructed view you could get from being above the world.

When I move Marty from her wheelchair I first position myself immediately in front of her. I then ask her to pull her right leg underneath her to support her weight as I pull her up to standing. I put my arms under hers, take my left leg and put it in front of her right leg to act as a brace then using my body weight I pull her to a standing position. All of this requires me to stand directly in her eye line.

We were leaving the lake the other day and I had positioned myself in front of Marty to lift, turn and help her into our car. As I stood in front of her, just before reaching down to slip my arms under hers she said, “Your pants are unzipped.” While speaking she moved her right arm up, pointed with her index finger at my fly, poked me in my unzipped area and laughed.

I looked at her and said, “Thanks for letting me know, but be careful poking a skunk, you never know what might happen.”

She laughed again and said, “I couldn’t help but see it, your crotch is in my face.”

Of course my crotch is in her face; her face, when she is in her wheelchair is crotch level, she sees a lot of crotches and butts, it’s whats at eye level, it’s her angle, her perspective on life. When she looks anywhere she sees a world of butts and crotches. The height from which we view life shapes us, when you are down low you see a lot more detail but sometimes it’s detail you don’t want to see, all the time.

Life in a wheelchair restricts your view almost everywhere. In the grocery store you can’t see the stuff on the top shelf, in the movies you get to sit really, really close, on balconies you get a great view of the rail, at zoos they somehow have managed to put crossbars right at eye level and in crowds you see a lot of asses. It would be great to have a wheelchair that goes up and down to raise people to eye level.

I had no knowledge about life in a wheelchair until Marty had to sit down in hers and I had to maneuver her through the maze and obstacles of daily life. Living with Marty has taught me a lot about different perspectives, she has taught me how easy it is to overlook how we put our best crotch forward to those who can’t really see anything else, who can’t avoid ogling our butts.

The most important and the simplest thing I have learned is something we all naturally do with dogs and little kids, we get down to eye level. It’s really pretty easy to kneel down, sit down or squat down to get eye level with people who are permanently relegated to sitting. Marty reacts better and engages more when she is seeing faces and eyes, not zippers, pockets or panty lines.

It makes sense, we may get some superficial understanding about people by gazing at their butt, but it’s our faces and eyes that give us detail and Marty always wanted the details. I’m just glad I have someone to let me know when the ol barn door is open.

Monday, March 7, 2011

About Them Strokes

On April 2, 2005 when Marty had a hemorrhagic stroke, 2000 other people had strokes. That year over 700,000 people were struck down by one of the two types of strokes, ischemic (blood clot) or hemorrhagic (bleeding in the brain). Stroke, in whatever form, is devastating and lethal, it is the 3rd leading cause of death in the United States today.
What I didn’t understand about strokes when Marty first went into the hospital is how permanent they are. What I didn’t understand about strokes was how many ways a stroke inculcates its way into your life and how many pieces of your body simply quit functioning or quit functioning well.

When you have a stroke, any kind of stroke there is a 25 percent chance you will die within 12 months and a 40% chance you will experience a significant impairment and a 10% chance you will move to a nursing home. And, if all of that is not good enough to get you to quit smoking, once you have a stroke the odds of you having another stroke are much higher.

Stroke kills but it is also the leading cause of disability in the United States. The effect of stroke absolutely robs people of their most precious resource, their brain, their mind, the ability to think with clarity, to communicate without thought, to move with ease. Those things we take for granted, swallowing, standing, scratching your head, getting dressed, or solitude are in the past, everything requires effort and assistance.

Marty’s first stroke, a subarachnoid hemorrhage, came very close to killing her. The majority of people who experience this kind of stroke either die or end up institutionalized. It was caused by the rupture of a congenital aneurysm in the left front of her brain. She, we, were lucky, the rupture clotted and stopped bleeding long enough for her to have surgery, it only started to bleed again once they entered her brain to repair the rupture.

My miraculous Marty largely recovered from this first stroke, but there were significant changes in her. The rupture was on the left side so she experienced significant weakness on her right side and struggled with short term memory loss and some cognitive functioning. Marty participated in physical, occupational and speech therapy and gradually recovered much of her strength but her personality and communication skills were markedly changed. The fiery, loquacious, raunchy Marty was just gone, replaced by a quiet, contemplative Marty. Pieces of her that made her the unique Marty were gone, Marty the educational psychologist would not teach again, she would not coach again, too many pieces were erased by the bleeding.

Statistically speaking, Marty’s second stroke should not have been that much of a surprise as about 25% of people who have one stroke will have another within five years. I was so full of gratitude and amazement at her recovery from the ruptured aneurysm I didn’t really think about it. I was still trying to adapt to the new Marty and trying to make sure we both maintained health insurance, I sure wasn’t thinking about a more devastating event.

Eight months after the first stroke Marty had an ischemic stroke, essentially a blood clot in her brain. This time it was on the right side, affecting her left side, this time the consequences were much worse and much more debilitating, this time she went into a wheelchair, this time she lost the function of her left side completely, this time she could no longer care for herself at all, in even the most basic functions, this time was much worse.

Marty is one of about 4 million stroke survivors in the United States. Like many she can no longer walk, stand on her own, move from one place to another without assistance, eat without supervision, bathe alone, get dressed, take her medicine or choose her clothes. Much of what was Marty is there, it’s in her eyes, her laughter, her humor, her enjoyment of simple things, but the strokes took a huge portion of her life, just as it does for so many. We are lucky to still have what we have; in spite of it all we have things for which we are grateful.

$62 billion is the cost of care and lost work for the four million stroke survivors. The medicine, the caregivers, the tools, the machines, the doctors and the hospitals all cost and all the costs mount up but all of that pales in comparison to the loss of identity, independence and self.

Stroke is one of those things that will affect most of us at some point in time in our lives. Four out of five families will somehow be affected by stroke. The best thing any of us can do is quit smoking, exercise, control our blood pressure and diabetes. The next thing you must do is if you exhibit any of the signs of stroke get medical help, right now, it can help . The consequences of doing anything else are simply devastating.
Data from American Heart Association, National Institute of Health, Center for Disease Control