Tuesday, August 24, 2010

The 23rd of August

Yesterday was Marty’s birthday, the 56th, the fifth birthday since her first stroke, the fourth since her 2nd. For Marty, every day is a victory, every birthday is cause for a celebration of living; for me this birthday is a milestone therefore a time for an historical retrospective.

Five years ago on the 23rd of August we had a birthday party celebrating Marty’s recovery from the cerebral aneurysm. While she had clearly lost part of herself to the brain injury she had made a remarkable recovery. We celebrated with friends, music, singing and tears. Somewhere along the line I had become a real crier. Marty was clearly different and cognitively diminished but we looked to the future with hope for recovery and I felt secure in beginning a search for my future.

Four years ago on the 23rd of August we looked back on the past year envious of what had been. What we lost with the 2nd stroke during those 365 days was huge. Marty was no longer able to walk or care for herself in any way. She rarely talked and never really initiated any conversation. She used very simple sign language simply to say yes or no. This birthday was a milestone, but it was devoid of hope and I was more focused on Marty dying than her living.

Three years ago on the 23rd of August we had marked time and seen some improvement. Marty was not as sick, but she was still ill and weak a good part of the time. We did some therapy, we learned to watch for signs of illness and we established a remarkable rapport with Marty’s doctor and his staff. We had finally found excellent caregivers and we had learned to live and work in tandem with them. Death did not seem as close. We again celebrated Marty’s life, not just her birth, but her continued life with family and close friends.

Two years ago on the 23rd of August we had the celebration at our home with family. For Marty’s birthday we had a photographer come and take family portraits. This photograph now hangs over the mantle in our lake house as my personal ode to narcissism. It reminds me of something the Cartwrights of the Ponderosa would have had on their wall.

The year was marked by another very close call in November and for the first time our doctor, Great and Wise, asked me the question, “Do you know what her wishes are?” Not a question you want to be asked, but it is a question where you better have already talked about your answer with people who care. I hated the answer.

We, meaning me, had learned several critical procedures over the previous year. I learned how to better care for Marty; the chief lesson, how to deep suction. It’s an awful procedure but one that allows Marty to fight infection better. While we spent some time in the hospital, we had finally found a rhythm to our life, I was finally seeing how we could live and enjoy our life instead of waiting for an inevitable death.

Last year on the 23rd of August we had a party at our new lake house. It was a great gathering with family, friends, a pregnant daughter-in-law and an improving and reasonably healthy Marty. That year we lost Andrea, but added Erica to our caregiver stable of Nikkie and Renae and we found great comfort and peace in strong, reliable women helping us through our life. These three women are one of the biggest improvements in our lives. We had to kiss a lot of frogs to find them…..actually, maybe they found us.

This August 23rd was a scaled down day-of party. Being the domestic god that I am I did cook the requested chicken fried steak, mashed potatoes and cream gravy. The CFS was great, the potatoes were perfect, the gravy was thick, heavy and not really white, I’m still in training. We will have a bigger birthday bash with the whole fam over Labor day. We have a raft of birthdays in August and September; apparently our family likes to procreate in the winter months.

Over the past 12 months I have continued to learn, I have continued to become a better caregiver. We have all gotten better. We experienced one devastating seizure and equally devastating broken arm which drove us to new meds and new methods of care for Marty. We have learned new things about infections and maybe, just maybe have turned a corner on the frequency of said infections because for the first time ever we have gone three months, a quarter of the year, antibiotic free. That’s a really, really good thing.

Our progress over the last five years has been nothing short of amazing, but then you have to know I married an amazing woman. We have gone through the proverbial peaks and valleys of life and I suspect we have more hell and heaven in our future as we continue our journey. I think when we look back, when we look at our history, when we see the tracks we have made we gain perspective on that journey. As I look back and see how Marty has gone from a woman barely able to talk and constantly under a death watch to my wife who clearly sees, feels and enjoys significant parts of her life I can see how amazing our journey has been. I have moved to hopeful.

Friday, August 20, 2010

Advice From My Brain Damaged Wife

I've said it before, Marty says it again, I hover. It’s just part of who I am, I have a problem, I admit it, my name is Marty’sHusband and I hover.

Before Marty's strokes I was a hoverer. When we had an argument, when things were off with us just a bit, I would, in her words, figuratively”take her pulse" or "check her temperature" to the point of driving her a little crazy. I would circle her, watch her every move and pretty much drive her crazy trying to get her temperature and the temperature of the room. I guess all of the practice of figuratively taking vitals helped me in the transition of literally taking her vitals.

I still do the same thing, I still hover, I still buzz around Marty like a big gnat with a beard watching for signs; now I simply check for different things. But, just like our little dachshund, Maggie, who is always up my butt, driving me crazy, I'm always up Marty's derriere, just watching, looking, checking to see if everything is alright; of course I drive her a tad bit nuts.

One of our caregivers, Nikkie, has a 14 year old daughter who has been having more than her share of physical problems, not the least of which are severe seizures. I've seen Marty have a couple of seizures, it's not for the faint of heart, and in fact it's one of the most frightening, disconcerting events I have ever seen. Xaveria, Nikkie's daughter has had several episodes of multiple seizures. I understand the stress Nikkie feels.

At lunch the other day Nikkie confessed her own hovering proclivities; it’s in her paternal DNA. Who can really blame her for excessively watching over her baby girl, who can blame any of us who hover incessantly?

I asked Marty if she thought I still hovered too much, thinking maybe I have done better with her recent spate of good and stable health. She of course said, "Yes, you do, all the time." One of the things about Marty that has not changed is you should never ask her a question if you are afraid of the answer, because she can be unfailingly blunt,

I looked at her and stumbled through my standard excuses of why I was a hoverer and how vital my hovering was to her well-being. I asked her if it kind of drove her a little bit, a tiny bit, nuts. She looked at me with her soft blue eyes, swallowed, took a deep breath, sighed, and said, "It drives me a lot nuts." I would hate for her to sugar coat it for me.

It’s why I fell in love with her, the frankness, and it never fails to amaze me. I said, "I just can't help it. I worry, I’m a worrier. I want to make sure you are all right. How do I quit that stuff, how do I quit hovering?"

Marty looked at me, stifled her laughter just a bit, grinned, and with all seriousness and wisdom said, "Just take two steps back."

Okay, from the mouths of the brain injured comes great wisdom. “Just take two steps back,” is great advice, but like so many things, easy to say, hard to do, to take two steps back.

“Two steps back,” is great advice for Nikkie, the caring mother, to keep from smothering her daughter, when she can. It’s a wonderful thought for me to keep from being the nagging husband to Marty. Its even great advice for those with Obama derangement syndrome, and it’s a perfect admonishment for those who are comfortable with discarding our 1st amendment to the constitution. In short, its pitch perfect for all of us who occasionally take ourselves, our tasks and our ideas too seriously.

Just listen to Marty and take two steps back and see if maybe, just maybe, all of the hovering and obsessing is actually helping; take two steps back and maybe your perspective will change, maybe it will be just a bit clearer for you. Sometimes seeing things from a distance really helps.

Thursday, August 12, 2010

The Marty Test

Before Marty's strokes, before she was relegated to a wheelchair, before her ability to communicate was burned away by the brain injury from the strokes I never really paid attention to people in wheelchairs. I was like most of the rest of the world, I saw someone in a wheelchair, I saw someone debilitated in some capacity, I saw someone who was different, and I looked past them. I wasn't necessarily afraid, I was unnecessarily uncomfortable.

I see it a lot now, almost exclusively with adults, a lot with young adults. It's a bit scary for them to see Marty, to see someone like her who can't move for themselves, who can't really take care of themselves, we are completely dependent on others. Some do as I did and look past her, some avert their eyes, the very young often stare because the wheelchair, the broken body is new to them, it's foreign to them.

I look to see how people react to Marty in her new condition. It's become something of a test, the Marty test. It's funny and a little bit sad the people who flunk the test. It's not a hard test, it's really pretty easy, you simply have to recognize that it's Marty, be able to engage with her on some level and touch her; so simple yet so hard for some. I do understand, though I no longer have sympathy for the failure to reach out and touch the least of us.

I've seen how a few, just a small number of her old friends, have been washed away by the discomfort. I'm not sure if it's the change in Marty from gregarious, engaging and physical to her new quiet, internal reflective self. I'm not sure if they think the stroke is communicable and they are afraid they will suddenly be "stroked". I suspect it is a little of both. I'm not sure I would act much differently if they were the ones in the wheelchair and I was one who just simply didn't understand the beauty of touching Marty as she is now.

Lyle, Erin's boy, and Sammy and Luke, family friends, always pass the Marty test with flying colors. Lyle is an adult who had to pass the test to move into our family, the other two are children who simply revel in the company of others. Since Lyle first came into our home he was never afraid to talk to Marty directly, to touch Marty, to kiss her cheek when offered. Lyle laughs with Marty, he jokes with Marty, he treats Marty as his prospective mother-in-law, and he passes the test easily. His comfort with Marty is part of who he is.

Luke and Sammy are kids. I’m not sure if it’s because their mother is a physician or simply because they are kids but they talk to Marty, they ask Marty questions and are thrilled when she answers them. The comfort they both have with Marty, and I suspect anyone like Marty, is what gives them the passing grade, they aren’t afraid, they aren’t restrained, they treat Marty like a regular person which is all that’s really required.

Here’s the truth. Marty is different. She is different in many ways from what she was; she is different in many ways from the norm, whatever that is. What so many overlook, what so many don’t understand is that Marty still feels, she still is very intuitive, she still knows who is comfortable around her, she still listens and understands clearly, she just doesn’t carry the conversation anymore. I don’t think that kind of thing is that important to her any longer.

The test, oh, there really isn’t one. Maybe there should be. Really it’s just a way of saying and recognizing some people who have difficulty relating to people who are different. I can tell you, if there was test, all you would need to do to pass is treat Marty like a real human being, like the person she has always been, and then just maybe touch her a little bit, she likes that, so do I.

Thursday, August 5, 2010

A Wedding is Coming

My baby girl is getting married. The little girl who captured my heart 27 years ago when she was born with the roundest head I had ever seen. The little girl who I rocked to sleep, who often snuck into our bedroom to sleep on the floor next to her mother, who learned to snow ski between my legs and cried all the way down the mountain in a blizzard, who could be soft and cuddly or rough and tumble, who could throw a softball and catch a bass, my baby daughter who is somehow a child of the sixties is marrying some guy named Lyle. Oh, shit!

It's not a big surprise, in fact, it's time, and even I accept that it's time. Lyle is a good guy who has passed the Marty test, Erin is special, they are a match, a good match, it’s very clear they love each other.

I don't have the first clue about weddings and I’m in over my head. I miss Marty. I know all about marriage and I'm a veritable font of unwanted, unneeded and unheeded advice about marriage. I know zero about the social graces and rules and societal laws which apply to this process on which we are embarking. That's where Marty would have been my guide.

When Marty and I got married 35 years ago my job was to keep Marty from having a hit put out on her mom and to be where I was assigned when I was told. When Matt, our eldest got married, my job was simply don't make things harder and get out of the way. Somehow this seems like it’s going to be more complicated for the father of the bride.

Marty was one of the world's great idea people. She would have been perfect in some very esoteric think tank. Her innate ability to see things others don't see and to capture different perspectives were an incredible complement to my more basic view of, well, everything. Sometimes she made the simple complicated and the easy hard, but she never settled and she would have been dead smack in the middle of planning this wedding and she would have found unique ways to craft every minute of the event. It was an integral part of her nature that the strokes took away from all of us.

That's just one part my wife I miss. I know the kids often miss the consummate "mom" part of Marty and I know Erin feels this deeply. It's when we are faced with milestones like a wedding or a baptism or a birth that I miss the old Marty the most. The feeling of my loss, the knowledge of her loss, the feeling of being on an island alone is sharpest and most poignant when we are faced with touchstone moments in our life. It's when I am most reminded of what has changed, what is gone forever and how different life is for us.

As happy as Erin is about this union she feels a very real, almost tactile sense of loss. There are times Erin misses her old mother. She doesn't miss the love, because the love is still there and obvious in the way Marty touches her and looks at her; Erin simply misses the mothering Marty did so well, both of our kids do. I try, I truly try and remember how Marty would have handled a situation or what she might have said, but I'm just a big ol' hairy, occasionally impatient Dad, it's just not the same, I don’t have the same skills. They are stuck with a good father but a poor substitute for a wise and sage mom.

We all realize we are lucky to have Marty in any capacity to participate, to help choose, to simply be there for the wedding. We all appreciate and recognize the good and great gifts Marty still brings to all of our lives. Those things are very real; you just can't forget what was.

The best part of what will transpire over the next months in planning this little soiree is Marty and Erin won't be fighting as many mothers and daughters do while planning a wedding. The sad part is that Marty and Erin won't be fighting as many mothers and daughters do while planning a wedding.

The plan for now is to involve Marty in all elements that seem reasonable and in ways she tells us she wants to help. She wants to be involved, she wants to help choose a dress, and she will be great at helping with the cake (me too), we simply want to keep her engaged to the extent it feels good for her and for Erin. She has already helped me go through the first pass of a guest list and she has started planning in her own mind what she wants to wear as the Mother of the Bride.

For me, I know, I get it, Father of the Bride's main job is say, "okay, that's sounds great." I got that down, now I just need someone to help me with where to stand, and Marty has already offered to tell me where to go…..