PTSD and Me

It is important to know that my wife was a dialysis patient, and that she was never really healthy in all the years we were together. When we first got together, I used to count the number of days she was not in the hospital. She lived as long as she did because of her resilience, courage, faith, and toughness. Our life together was not about her health issues, but her health was a major factor in our life together.

She dialyzed at home, overnight. She did this in her chair, catching as much sleep as she could. Dialysis is a loud process: the pump of the machine, the pump of the Pureflow dialysis fluid machine, alarms of varying degrees of urgency. I slept in the other room, unconsciously on alert, unconsciously analyzing each alarm as it rang. If it alarmed once or twice, I knew Jenny had it. If it persisted, or if the alarm kept recurring, I sprang up to see what was happening.

You never know what you’re going to see. Many times I would see Jenny at wit’s end cursing  the machine, cursing dialysis, cursing the fact that she was having to do this, all while trying to fix whatever alarm was ringing. We had a big manual with a chapter called “Troubleshooting” and unless we knew right off what was happening, we’d drag it out, open it up to find the alarm, and attempt the remedies. Some alarms, like air in  the bloodline, give you only a couple of tries to fix, and then you’re done: the machine stops, and you lose your blood, meaning you pull the needles and any blood in the lines goes into the trash. That only happened once or twice when we were home, and it is a major loss. You lose your blood, and you have to get set up for another run, which takes about twenty to thirty minutes. Sometimes Jenny would leave her needles in and hook up with the new cartridge. You don’t have a lot of options here, because when you start a run, you pump in a dose of Heparin, which is a blood thinner. It’s dangerous to screw around with that, so best to start again.

Sometimes Jenny would sleep through some pretty alarming alarms, such as a kinked blood line, which causes the pump to stop, which allows the blood in the lines to clot if you leave it too long. I’d do what I can to clear the alarm and make sure she was okay. She did not sleep well, so I was glad to see her sleeping; not so glad to see her sleeping through alarms.

Jenny was on the transplant list. When she was active on the list, she was first up – meaning all available kidneys would be crossed with her if there was a possibility of matching. The last few months she was off the list due to some health issues she needed to address. But we did receive a couple calls for transplant in 2014, only to have them withdrawn because the donor did not match. Due to her antibody count, she was nearly impossible to match. The transplant doctors would tell us there’s a slim chance, but still a chance, but then when their guard was down, one or two voiced to me, at least, that it was impossible.

When Jenny was in the hospital, again, I was on alert. I didn’t sit waiting for a phone call – I didn’t want a phone call. Phone calls from hospitals are bad news. If a phone call did come, it could be the nurse calling saying that Jenny wanted me to remember to bring her slippers, but sometimes, it was worse. One time I got a call from Jenny where she was crying and frightened:

“Oh, Marko – I don’t know what’s happening! I feel like I’m going crazy, I need you.”

“I’ll be right there.”

Turns out, it was an adverse reaction to Phenergan, which was used to keep her from getting nauseated after getting morphine. Oh my God she was pissed off that they didn’t tell her what it was and what it was for.

Looking back, I realize now how hyper alert we both were. And, apparently, I still am.

Yesterday morning, my phone rang at 4:52am. It was an unfamiliar ring, and it was on Skype, which I never use, but which I have turned on anyway. I get lots of requests to be connected by many dubious people, and none from people I know. But, no one has ever just dialed until yesterday early morning. Half-awake, and wondering what the hell was going on and who the hell would be calling me at 4:52am, I looked at the name: “adwoa amankwaah.” I rejected the call. Immediately, it called back. I rejected it again. Another three immediate call backs, and I rejected each call.

What flashed through my head during this process was: who is calling me? Why are they calling so insistently? Why at 4:52am? Then:

Oh my God, Jenny – Oh my God Transplant. And I knew neither one was possible, and yet I still felt it.

I thought it may be work-related, but then seeing the name I knew it wasn’t.

That feeling of dread, of urgency, and of fear lingered, and I felt that surely someone somewhere must be dying or hurt, someone I need to help, but can’t. Even though I knew it wasn’t true. It slammed me right back into it. I wasn’t glad to realize it wasn’t true, you know, like when you wake up from a nightmare and realize, “Hey! Martians really aren’t invading!” No, I wasn’t glad. I was sad, because it reminded me of the last time it was true.

The Big Chill

We have had mountains of snow this year in Central Oregon, and we are on track to get at least another foot of snow over the next couple of days. We have had snow on the ground since December 6th. But I don’t want to write about snow. Writing about the weather is the last refuge of a scoundrel.

I will write, however, about how it is affecting us here in our community. As I said, it started snowing on December 6th, but the big dump came a week later. And then came the cold – temperatures in the ‘teens dropping to sub zero. Sisters, Oregon is on the edge of the Deschutes National Forest, and is a “destination” town for all kinds of outdoor activities, including camping. Central Oregon rents have been increasing the last few years, and therefore we have a contingent of homeless folks who make camp out in the National Forest or in their vehicles around town. In summer, it is actually doable. Since there is a lot of camping of all kinds, Sisters has amenities to support backpackers and campers. The National Forest allows “dispersed camping” which means you can trek out into the forest, find a spot away from people, and set up camp. So, some people opt out of apartments and elect to follow the primitive lifestyle. And then winter comes, and their campsites are buried in snow, and there’s no plowing out there.

On December 17th, Sisters was shocked by the death of a man who was found in his car across the street from McDonalds. He lived in his car, and he was known around town, at least in passing. He worked at McDonalds, and he spent time in the library on the computers. My son knew him from the library, but not well. The night of December 17, he slept in his car with the car running, and he died. The preliminary cause of death was carbon monoxide poisoning. The temperature that night went down to -5, and that was the first really cold night of the season. It was cold, the gentleman went into his car, turned it on, turned on the heat, and then was overcome by carbon monoxide fumes as he slept.

The truth came a day or two later: He did not die of carbon monoxide poisoning. He died of hypothermia. He froze to death. That shocked me and a number of other people in the community. His death was tragic in any circumstance, but with carbon monoxide, it was an accident that could be avoided – open the window, whatever. It was just bad luck.

But when a man freezes to death – that is different. He didn’t die because he was unlucky. He died because he was homeless. Despite having his car running, the cold still killed him. The cold was too much. The cold was greater than he and his circumstances, and it overcame what a prudent man might try to do to stay alive. And that was shocking.

He had family. How do you call his parent? How do you tell a father that his son froze to death in a car across from a McDonalds?

His death sent home the point that subzero temperatures are no joke, and that there are a number of people in our community who are at risk. It also sent home the reality that despite the fact that the economy is getting better, there are still a lot of people who are out there just on the edge of disaster.

 

I’m trying to think of some message that we can glean from this tragedy, some words of wisdom to impart that will wrap things up neatly, but I can’t. It really affected me that this man passed away, and that he did so in such a manner. It’s sad, and it shouldn’t have happened. Yes, accidents happen all the time, but the death of this man hit close to home, and it just shows that we have work to do, that we can’t just say to people “sink or swim.” These people are doing what they are supposed to be doing, and yet they are still in trouble. They have jobs, they have cars, and yet, they succumb. I guess the thing to do is to be kind. To assume goodness. Most people are good. And help when you can.

On January 1st, members of the community set up the Sisters Cold Weather Shelter in one of our local churches to provide a warm place to stay to anyone who asks on nights where the temperatures go below freezing. This is a great thing, and it makes me proud that we chose Sisters as our home. This is a great example of the things we can do to help.

Newly Discovered Favorite Things

I ran into two things today that I had never heard of before, both of which I am happy I know about now. The first is a song by John Stewart called “Mother Country,” which was a song forwarded to me by a friend in response to an earlier post. I had never heard of John Stewart, and here was this beautiful and masterful performance that just carried me along for over six minutes. I looked up John Stewart and found out he was a member of the Kingston Trio, and had been performing since I was a baby. How could this be? And then I found out he recorded a song called “Gold” in the ’70s, which I remembered, and which I did not like. And ten years ago, he performed “Mother Country,” and thankfully it was recorded, and now it’s one of my favorite things.

The second thing I ran into was a movie. I had opened up Quora and on a list of questions was this one: “What movie can you watch all the time and never get tired of watching?” I opened it up, expecting the usual answers like “Die Hard,” “Forest Gump,” “True Romance,” “When Harry Met Sally,” etc. Well, one movie came up a couple of times that I had never heard of, an Indian Bollywood movie from 1971 called “Anand.” Here’s a movie that’s been out for forty-five years, and is such a favorite in India that there are people who would love to see it over and over, and yet, it was completely unknown to me. It is the story of a doctor who was dejected in his work, who was tired of death, and tired of poverty leading to death. Then one day, a friend of a friend comes to town who is terminally ill, named Anand. Anand has cancer, and has only three to four months to live. And yet, he is cheerful. He tells the doctor “yes, I am going to die, and you are going to die. Right now, your body is breaking down, getting older and weaker, and you have only forty years to live. What does it matter as long as we are alive now?” It is a remarkable movie. I can see why people want to see it over and over.

Two favorite things in one day.

I am an optimist by nature. I look at the world, and I have to believe that we are getting better and better. I know we’re getting better and better. I believe that you can find whatever you look for. But if you look at existence you have to look at the full spectrum of existence, not just slices. Oh, there are atrocities on this planet. Oh, you can’t think of a way to kill someone that hasn’t been perfected by someone somewhere and been done over and over. And you can’t conceive of the worst things that can happen and have happened. There is always something awful that we can be shocked by, disgusted by, and fearful of. And we can do what we can to eradicate these things. But if we are to wallow in the awfulness of Man and the evils of disease and disasters, we must also contemplate the opposite: Beethoven. Shakespeare. Charlie Parker. The Beatles. And we must celebrate the good in humanity, as well. Doctors without Borders. Electrical linemen who brave blizzards to turn the power back on. The billions of small and not-so-small miracles that happen every day. I believe there is more good than evil in this world. As Fred Rogers said to do when disaster strikes: “Look for the helpers.” There are always more helpers than there are evil doers. Always.

And when I contemplate the good that is in the world, I am constantly reminded that there are incredible things I have never seen, and wonderful people I have never met. There are songs that have been written that I have not heard that will be a favorite of mine some day. There are places I have never been to that will be magical places when I finally find them. There are amazing books that I have never read. And especially, good friends I have never met.

And that is true for all of us. Keep an eye out for great things, and great people, because they are out there, and they will be your favorite things some day. It makes me happy to know that.

 

 

Loss and Life

I lost my wife, Jenny, four months ago, on August 31st, 2016. Her heart failed. It was the worst thing to ever happen to me in my life, and these last four months have been the hardest I’ve ever had to endure.

Jenny was a “dializor” – a term she preferred to “dialysis patient.” She initially went on dialysis at 17 years old. She had a transplant when she was 32 which lasted ten years before the very drugs that prevented rejection destroyed her kidney, finally. She received the kidney on October 1st, 1994, and thereafter October 1 was her “rebirth-day.” It was a joyous day until 2005, when her kidney failed, and then it became a sad day as another year went by on dialysis. She was on the transplant list, but she was virtually impossible to match. So, she stayed on dialysis and persevered through setbacks, health issues, low blood pressure, mysterious infections and fevers, and pain. Her last year was difficult, and she finally gave up hope. And then she died.

This is an extremely abridged version of Jenny’s life, her struggle, and her fantastic resilient spirit, but for the purpose of this post, that’s what happened. Jenny and I were together for thirty years, eight months exactly. When she died, my life was over.

I knew that Jenny would pass before me. I never expected that it would be as devastating as it was and is. When you marry someone, you become in many ways one person. Jenny and I had a common life. We grew up together. We shared everything. We had passions that we shared, which no one else understood. We named our dog “C. K. Dexter Haven” because Jenny loved how Jimmy Stewart called that out in the movie “Philadelphia Story.” “C. K. Dexter Haaaaaven!” She loved the idea of having a small regal Sheltie have a such a long name. And, I’ll be damned, but the name suits C. K. Dexter Haven to a tee. Jenny and I loved that, and we totally understood it since we loved that movie, and I can tell you I was genuinely surprised that apparently no one else got the joke. C. K. Dexter Haven (there is no short-hand here. His name is C. K. Dexter Haven) was Jenny’s last birthday present. Thank God I got her that puppy.

When you have that kind of relationship, you die when your partner dies. I used to think  that it was over dramatization when the husband went crazy when his wife died, like in “Gone with the Wind” when Scarlett’s father goes crazy when his wife died. Now that it has happened to me, I get it. I heard of couples dying within days or weeks of each other. Will and Ariel Durant died within two weeks of each other. Just last week, Carrie Fisher and Debbie Reynolds died within a day of each other. People can die of a broken heart. I get that. Your life is over. You have to choose to live after something like this. It is not like you died. You did die, in that your life as it was is done. There is no going back. It is over. And in order to go on, you have to choose to go on, and figure out what the hell you are going to do. And whether or not you want to.

I am blessed with a son, so no matter what else happened, my job is to help him. He needs to grow up, and he needs support and love because his life as it was is over too, at twelve years old. I cannot change that, but I can help him.

There are a lot of things in life that allow “do-overs.” In the movie “City Slickers,” the frighteningly young men were in the throes of their respective mid-life crises where  they needed a “do-over.” When you lose your spouse, there is no “do-over.” It’s cussing over. Death is cussing final. Everything you should have said, you cannot say. Everything you should have done, you cannot do. There’s no reset button. You can’t “respawn.”

I’m in the middle of this. It’s been four months, so this is new. All I know is that I cannot rush the mourning. I cannot rush my son’s mourning. It is involuntary and primal this process. One of the things that has helped me is that while Jenny’s and my life was unique, what is not unique is that I lost my wife. Every successful marriage will go through this. One partner will live. One will die. It is, therefore, a fundamental part of the human experience. And I never knew it. It never even dawned on me until I lived it that this devastating thing is common. I feel that this grief is part of my DNA, that I am riding a wave of grief and mourning that shifts and morphs and moves around exposing all sides to the pain. I was with Jenny for 30 years. Given my family’s genes, I will probably live more than 30 years longer. My future life without Jenny is likely to be longer than my life with Jenny, and that that slays me. This process is like a rebirth. I have a new life. Whether I like it or not. So I think that this primal mourning prepares you for it, or it kills you.

We adopted our son at birth, and we were with the birth mother before and during labor. That, too, was a primal experience. I was getting sympathy pains. I always thought they were a myth. But no, they surprised the hell out of me. When my son was born, the flood of love that surged in me for this little baby boy was oceanic. I had no idea. There was no choice here. He was my son. He was from that moment on my guts. My sinew. My soul. I did not decide this: it was automatic.

The process of loss for my wife is similar, except it is primally enduring the pain of my past sliding behind me instead of the intense joy of creating a new future. They both seem like they are encoded in my DNA.

What do you do with this? What can you take from it? The movies treat widowhood as a transitory phase until you get your next spouse. Look at “Love Actually:” Liam Neeson gets Claudia Schiffer at the end and all is good. Or look at “Sleepless in Seattle:” Tom Hanks gets Meg Ryan and all is good. Both movies capture well the pain of widowhood, but I am not so sure of the solution. It is not so easy to move on from the love of your life.

The only thing I know at this point is that I had this beautiful life, and now it is different. It has awakened me to how ephemeral life is – not just the breathing part, but the contextual part. My life is different every day. Life changes every day. Each day is its own creation. And some people will be joining with you, and some people will be leaving. We blend our minutes and hours into days, and our days into weeks, months, and years. But each moment is discrete and unique. Some things just ooze along with minimal change, and sometimes things break suddenly, and the whole damn thing is now a new thing.

So, I decided that one thing I am going to do this year, is to be here now. Be present. Appreciate what is. Focus on the good. Embrace the bad. Alan Watts talks of life being like music. You don’t rush to the end; rather, you enjoy it as it happens. That is true. But what is more true is that life is like a playlist. One song ends, another begins. Musicians play in one, then they leave, and new musicians come in. And then, I guess, finally, you pack up your harmonica and toddle off yourself.

I know from experience that no matter what is said about death and dying, it’s not going to become real until it happens. There is no preparation. So what I can say is, if you live, surprising things will happen. Be ready to experience them, and to learn.

 

 

Memorial Day 2016

This Memorial Day weekend I am thinking about the men and women who died defending this great country of ours. Men and women from all races and religions. Immigrants and sons and daughters of immigrants. Descendants of the Mayflower and descendants of the first immigrants who crossed the Bering Strait 12,000 years ago. They died for a dream – America is not about what America is now, but what America could be and what it is progressing toward.

American Liberty is messy. American rights are messy. We have the absolute right to say whatever we want, regardless of who is offended. We have the right to be a member of whatever religion we choose, whether others call it a “cult” or not. We have the right to practice no religion – no one will burn us at the stake because we don’t believe in God. We have the right to have firearms. We can even wear them in public. We have the right to shut up and not to be compelled to confess to a kangaroo court. Our free press is the most powerful in the world. We are the only country with the right to pursue happiness. Our rights are indeed holy – the Declaration itself declares that Americans’ rights are “endowed by their Creator.” And to an American, the ideas of curbing the press or putting people to religious tests are blasphemy.

Our rights are messy. Our democracy is messy. Our democracy has always been messy – Mark Twain complained about congress 150 years ago. We’ve had ballot-stuffing, dead men voting, machine politics since the Republic began. And yet we’re here. The Republic is still here.

Our men and women went to war knowing that our Union is imperfect. And yet they went anyway, and they died for the America as it is now, and for the America it will become.
There is no greater sacrifice. And I thank them and their families from the bottom of my heart.