My Friend Loves My Wife

How people react and approach Marty in her wheel chair means something to me, in fact, it means a lot.  I may place too much emphasis on how friends and strangers treat Marty but if they are afraid, if they are reluctant to greet her or touch her or speak to her I make value judgments.

I don’t know if that’s fair or not, it just is.  It’s a big reason why I trusted son-in-law Lyle when we first met him.  He was not afraid, he did not stand back, he greeted Marty, he kissed her cheek, and he treated Marty like his girlfriend’s mother.  It went a long way with his girlfriend’s father.

I have a lifelong friend who has been my friend, roommate, teammate, counselor and friend for over 50 years.  Like any long term friend ship after we graduated from college and got married we kind of drifted apart, talking from time to time but going years between conversations.  

He is my best friend and he has known Marty since the beginning of Marty and Marty’sHusband.  He knows Marty from when she was the old Marty and now he knows the new Marty.  Post strokes and post his own heart attack Skip became a fairly regular visitor to our homes.  It was a fantastic renewal; his was a very welcome face to both Marty and me. 

 

Skip and I talk, about everything.  You know the kind of friend, the kind of friend where you can tell your deepest darkest ugliest stuff and they still love you, for me, that’s Skip.  Early on Skip confessed to me that it was hard for him to see Marty in her current state, he was unsure of himself with his old friend.  

He just didn’t know how to “be” with the new Marty and he really missed the old Marty, the sharp as a tack Marty, the killer wit Marty, the totally unpredictable Marty.  He didn’t know what to do with his sadness at the loss of the old Marty and he didn’t know how to act with the new Marty.

Things change with familiarity.  Skip has been with Marty a lot over the last couple of years.  He has sat down with her for meals, he has sat on the edge of her bed, he has celebrated birthdays with her, he has talked to Marty, he has hugged Marty, he has come to know Marty as she is today.

This last birthday I took Marty out for her favorite meal at a local haunt in Waco, chicken fried steak.  Skip came up and went with Marty, Nykkie and me for dinner.  Nykkie needed to drive her car home so Skip rode with Marty and me in our van.  

After we parked I let Marty, in her wheelchair, down from the van and had to go park the van because all of the handicapped spots were filled.  Without Nykkie I watched as my old best friend wheel my very best wife up to the door of the restaurant.   He didn’t ask, he didn’t hesitate he just did. 

It sounds small, it sounds insignificant and maybe it is for some, it’s not to me.  The guy who once confessed his uneasiness with Marty’s new persona was pushing her out of the heat, no questions, no pause, just lending an appropriate hand.  

When we got home ahead of Nykkie, our trusted care giver, I once again got up in the van, unhooked the wheelchair anchors and let Marty down.  Once again, Skip took Marty in her wheelchair and rolled her out of the sun, out of the heat to the garage door.  He struggled a bit getting the wheelchair over the threshold, the same threshold we all struggle with from time to time, but he put his foot on the back of the chair, kicked it back and rolled Marty into her room.  My old friend had become a hand.

Skip loved Marty, he loved that she was smart, he loved that she was funny, he loved that she had spice.  Like me with Skip, like me with Marty, there is a deep and abiding shared history which brings us close.  That shared history, that inevitable closeness surrounds and suffocates the discomfort with the broken Marty.  There is too much history to forget who she really is.

 

Skip loves Marty today.  He sees past the brokenness to the person she was and is.  Skip kisses her cheek, he sits on her bed beside her and laughs and talks with her and always wants me to tell her hello as we say goodbye from a phone conversation.

It makes me love my friend even more.

We're Meeting New People.....In the Hospital

So far we have met Shireen, Odessa and Katie.  Shireen is from Kenya, we met her in the emergency room, Odessa is not from Odessa and settled us into the room about 1 a.m., Katie is taking care of Marty in her room today.  We are lucky; these three nurses have been great.

Marty got sick last night, she did the body spasm thing and then, right after eating a marvelous dinner I had prepared, she threw up.  I don’t think it was a commentary on the pork tenderloin even though it was a bit dry.  It was, as proven by our ER visit, a systemic response to infection.

It was a surprise to all that we ended up in the ER that evening because we had just visited the good offices of Great and Wise to talk about a myriad of other niggling details.  Marty was sharp, clear, and responsive and at the doctor’s office.

After talking with Great and Wise I was flying solo in the late afternoon to give a couple of our ladies some much needed time away from us.  I kind of like being in the house alone with Marty, it gives us some time just to ourselves and keeps me really connected to all of the little idiosyncrasies of caring for Marty.  

I wish I could accurately describe Marty’s body’s actions when she does these spasm things.  It starts as a yawn and a stretch but is longer and more pronounced.  It is obviously different from a voluntary stretching of stiff muscles.  It almost always ends with a little moan from Marty and her upper torso contracting to the right.  

It’s all pretty subtle but when I see it I almost always start sweating from anxiety.  It’s actually a pretty amazing autonomic reaction on my part, Marty stretches uncontrollably, I sweat.

Dinner had been prepared but I knew, as subtle as it seemed, as much as I just wanted to blow it off and chalk it up to hyper vigilance we were going to make a trip to the ER, I started making plans.  Providence ER allows you to go on-line and set up an “appointment”.  What it really does is gives me some idea of how long we would wait to be seen.  I set up the appointment for 9 p.m.; the emergency room was clearly busy.

We ate supper and as I was cleaning the dishes, Marty still at the table started to heave a little, she was about to puke.  Now here is an amazing piece of rather gross information, I stood beside my bride as stuff came out her mouth, hands under her mouth catching the not digested food in a cloth all the while talking in a soothing voice, encouraging her not to hold back but let it go.  

This is completely contrary to my normal persona, in fact I’m feeling a little bit nauseated just writing about it, but for some mysterious reason that only loved ones and parents of puking little kids understand, how I felt about the vomiting process was not paramount in my mind. 

I immediately started planning a trip to the ER, not at 9 p.m. but right then.

As luck would have it the ER had received my request for an appointment and called and said I should bring Marty now.  I gathered the tools of our trade, the med list, the med history, the spare bag with hygiene essentials, my I pad and I pad charger.  With Marty loaded and locked in the van we got to the hospital about 6:50 and were in a room seeing a doctor and Shereen the Kenyan nurse by about 7:10, God bless Providence.

We made it up to a room on the third floor a little after midnight with the diagnosis of a mild pneumonia.  We met Odessa, the remarkably competent and caring floor nurse, she checked Marty out and in and I gave her my spiel and I left Marty in the competent hands of Odessa and her care giver La Shonda about 2 a.m...

We are still in the hospital hanging out watching Ellen and Jeopardy and CNN.  Marty has slept most of the day which is a good thing since she slept very little last night.  We have seen Great and Wise and will make some decisions about the length of stay after blood tests in the morning.

We don’t like being in the hospital, it really kind of bites.  All things considered we are here because we need to be and will do what we need to do to take our next step on our rather odd and winding journey.  

I never would have thought I could hold warm stomach fluids in my hand.  But it’s like a lot of things, you just do it without thinking because if you think about it too much it makes you kind of queasy.

Who Survived....Who Thrived?

I wonder what happened to them, the people we met along the way, the sick, the broken, the injured we came to know on our journeys through hospitals, ICUs and rehab units.  I wonder who survived; I wonder who found a way to thrive.

I don’t know that I have ever experienced the same intensity of emotions, good and bad, during our time in hospitals, ICUs and rehab.  You experience the joy of survival and the abject fear of the unknown with complete strangers surrounding you.  You see others experiencing the same thing and you come to understand you are the stranger watching people in very intimate personal times.

The ICU at Parkland Hospital was a desperate place filled with desperately ill people and desperate people who loved them.  At Parkland ICU there were no walls, only curtains separating all of the patients and their visitors. 

Because I was there a lot and there was not much privacy I watched a lot of patients and their people come and go.  I saw them bring in a young man, about 16 or 17, his mother by his side.  He was from a small community north of Dallas and had apparently run his motorcycle into a culvert and suffered major trauma to his body and his brain. 

I watched as his mother and father along with friends come and talk to the unconscious young man.  The men were all in the National Guard and I assumed they must have had medical training because they were working with the young man, working his legs and his arms talking to the comatose young man, encouraging him to keep functioning.  The father was destined to be shipped out for Iraq in about a week, this was 2005.  

While I was completely consumed by my own fear and grief I couldn’t help but feel for the poor mother who was dealing with the catastrophic injuries to her son while waiting for her husband, her partner, to be sent to a war zone. 

I wonder what happened to the kid.

The Zale-Lipshy ICU was much better.  There was a real waiting room and real ICU rooms where you could ignore visiting hours if you were quiet and kept a low profile.  I met the mother of a young man who had been a football player from Texas Tech University, my alma mater.  The kid had been on scholarship and took a hit the wrong way and broke his neck.  

The young man had been paralyzed for years and he and his mom were veterans of ICUs and the illnesses associated with paralysis.  Their story gave me a little hope and a lot of fear about the future for Marty and me.  I could not see me ever doing what this woman was doing, certainly not with the calm and grace she had.

I know what happened with this young man.  He died about three years later.

Marty went to Pate Rehab in Dallas four months after her second stroke.  At this rehab the clients lived in apartments and were trucked into the rehab facility daily.  Marty and I stayed with two men, Max, who was a fairly young man that had lost use of his left hand and leg due to a stroke and Campbell, a really sweet middle aged bald fellow who had also had a stroke and was prone to crying.  Both were confined to wheel chairs but much further along than Marty. 

I kept in touch with Campbell’s wife for a while after we left and I know he eventually got to go home.  I’m not sure how he progressed after that or if he ever got out of his wheelchair.  Max went home and I assumed because he was young had a good chance for recovery.  I got word from Campbell’s wife that he passed away not long after he went home.

Then there was the young woman who died in the ICU at Providence Hospital immediately after child birth.  She was fairly well known in the community and there were a lot of people around the ICU waiting room following her progress.   I don’t know the details; I can’t imagine how devastating it must have been to lose someone on such an amazing occasion. 

I wonder how her husband and child are today.

We saw countless people, husbands, old men, coming and sitting with their injured or ill wives night and day.  We saw mothers caring for children and caring for aging parents.  We saw life, the beginning, the middle and for some, the end, the dirty hard end, the real journey of life.  

Life can be, life is, amazing.  It can be singing at the top of lungs jumping up and down dancing joyous.  I like that part.  

It will also be dirty, down in the mud, broken, bloody, misery at times.  Real living is both.  It helps when you are looking at your journey to remember and you remember the people who have been on the trail with you and have touched you in some way.  

I remember all of their faces; I hope they all have found peace.

Dying Decisions

When I took Maggie, our geriatric dachshund, to the vet the last time I stood there and looked at her and confessed to the vet, “Every morning for the last few weeks I looked in her crate to let her out and kept hoping she had died in her sleep.”

The vet looked up from her business with Maggie and said softly, “That rarely happens with dogs who are well cared for.”

Maybe she told me that to assuage my guilt for doing in my old dog, maybe it’s really true, maybe well cared for animals live long, comfortably and fight to the end. Maybe it’s just happy talk, I don’t know.  

I want to believe there is a little truth in what she said and I wonder if the same could be said for people.  I wonder if maybe, as we get older, more infirmed or deathly ill good care means we don’t go easily, good care means we hang on a little longer to live and love those loving us.

My mind, being what it is, obsessed and a bit crazy; I ruminated over the vet’s comment and I eventually thought of how the comment applied to my life with Marty.  Of course that’s where my little pea brain went because all things, especially notions of life, love and death all come back to Marty.

No, I don’t secretly hope she dies in the middle of the night, not at all.  Marty has beaten the odds so many times in this whole journey; she has already outlasted any common sense mortality projections.  Marty has been at death’s door and refused to walk through; in fact she nailed the door shut.

The question is, did she do that because she has had good care, did she do that because she wasn’t ready to go, did she do that because she is one stubborn lady?  All three of those things are dead true but I don’t know how we have arrived at this point in our lives.     

I know that Marty gets exceptionally good care.  She has me watching over this team of amazing people ranging from a marvelous Family Practice Doc to our children and their partners to four fantastic care givers.  She gets good care, she gets good love.

I also know that good care often leads to really hard decisions like telling your doctor to put that purple wrist band on your loved one, you know the one, the one that has DNR scrawled on it.  I know that most of us will eventually be making some of those hard decisions affecting the people we love and some of those decisions will literally be about life and death.  Hard, really hard, impossible decisions lie in wait for all of us.

Having your long time canine companion put down is nothing compared to deciding to end life saving medical treatment, even when you know, even when you are sure with every fiber of your being that you are being true to a loved one’s wishes, even when you know death is a release.  I’m sure it feels like giving up on someone who needs you, someone you love enough to let them go.

I have known Marty for over 40 years.  She and I have talked, like most, about this very thing.  I know with every fiber of my being that she does not want to be on a vent again.  I know very clearly she does not want to have major surgery again, I know she does not want to ever darken the halls of a nursing home, I know what she wants.  

I don’t know what I can do, I’m the weak link in this particular chain, just like so many of the people who stand over their loved one’s bed trying to decide when and whether to unplug.  Knowing what’s right doesn’t make the decision easy at all.

I don’t want Marty to die in the middle of the night like I wished for with Maggie. With Maggie I was in my own way wanting to be spared the weight of having her put to sleep.  I’m not asking to be spared any part of this journey with Marty or any of the gut wrenching decisions that are part of that ride.  Shoot, the way this ride is going it may be Marty and our kids figuring out what to do with me. 

Ultimately, almost all of us will have to make a stop on this ride to contemplate and decide, how best to honor and care for the person we love.  

My wish for me and all of you, I hope it happens rarely, I pray it happens with love, and I hope we all show remarkable courage. 

Pontificating on Physics

I learned very little when I sat through high school Physics, I really kind of hated Physics.  I do remember learning that it takes energy to maintain an orbit and even more energy to alter an orbit.  Marty’s Husband burst out of his care giving, Waco, Texas heat orbit with a trip to Boston last week (what does it say about you when you talk about yourself in the 3^rd person). 

Rudimentary physics taught me that to maintain an orbit without any energy expenditure you have to exist in a perfect vacuum and not even outer space is a perfect vacuum.  When your environment is full of the gunk of life, stuff like responsibility, paying bills, working you clearly have to use energy just to maintain your orbit.

Marty’s first stroke threw us completely off-kilter and blew us out of orbit careening through a vast unknown space.  It took a lot of energy to get back into some kind of reasonable orbit.  Hell, it took a lot of juice to simply stay in orbit and to maintain any sense of regular rotation.  We were just getting into some semblance of a new rhythm; we were just starting to replenish our energy stores when the 2^nd stroke happened.

In the interim, between strokes, I had found enough energy, I had found my way to starting a new career, altering my own orbit just a bit.  I had signed up and paid for an alternate teaching certificate program so I could get back into the flow of life with a different kind of job.  I was looking forward to starting the classes when Marty slumped to her left that evening of January 3^rd.

After the 2^nd stroke we had to establish a completely new life, one that was totally unfamiliar to both Marty and me.  We had to force ourselves into an uncomfortable new orbit and it was exhausting to get there.  I found that it took a great deal more energy to live our lives and keep from succumbing to gravity and burning up as we fell to earth.  We spent a lot of our fuel simply staying alive.

I went to the teaching certification classes and actually took the tests to get my teaching certificate all while Marty recovered in the hospital and rehab.  When it actually came down to looking for and starting a new career I found I was completely out of gas and only had enough fuel to get us into our new orbit and keep us there.  There was no extra for outside interests or exploring new orbits.

We eventually got into a rhythm and learned a lot about our new orbit and the world we were circling.  We got accustomed to our new route and we were both able to maintain status quo without as much energy, but it seemed impossible to find the energy to break out of orbit and do something different.  It was simply too much work, too much worry, too much expense of high cost fuel to try and take a trip or start a new career or develop new friendships.

Things have changed in our world, not completely, it will never be normal, but frankly, normal is not all it’s cracked up to be.

Today I have found the energy and the bandwidth to do some stuff and not completely obsess over my bride when I’m doing said stuff.  Hey, that’s a big thing for a guy who is a 24x7 worrier. 

We have some excellent support in our lives and our children are always willing to spend time and energy in our orbit.  Because of all of that I’ve been out of my box a couple of times, I have seen some new orbits and in doing so I’ve learned some new things, and I love seeing and learning new things from new people and exploring strange new worlds, like Fenway Park.

I miss Marty when I go; mostly I miss not having her to experience the new stuff with me.  I think when I leave Marty misses me, some, but she likes the break, the small alteration to her own orbit.

I think she sees when I am gone her orbit changes just a little too and she too has to work a little harder, she has to use more energy to alter that orbit and not crash.  I think she likes that seeing the world from a little different route. 

A lot of this whole thing is about how much energy you have, what is using that energy and where you want to expend that precious resource.  Always and forever I will circle our world with Marty that is where I will and want to spend the majority of my time and energy. 

I will continue to go and come back, I will continue to break free of our own gravity and explore other worlds and then re-enter our orbit.  Marty will continue to support my temporarily breaking free because I often bring gifts from foreign lands and sometimes that gift is nothing more than a stronger me better equipped to keep us both in orbit.