Bedtime Story

It is late or maybe it is early, I have really never been sure what to call these in-between  hours. Before the early birds rise and there is only some shift workers, bar people, and me. I have always known there are others, the unemployed, the brokenhearted, and those who have lost their way. Now I am becoming keenly aware of another night dwelling group.The concept of time for these people is clearly divided into day and night. The rhythm of the day is normally controlled by events, things you do, while nights are often measured not in events or even hours, but in minutes. How long was your night is often the most relevant question that can be asked. Night terrors may have a specific definition, but for me it’s meaning is more generic. To be afraid of, or long for the night to end or sleep to come. Do not mistake me I have always love the night.It has a quite and a beauty, that is wrapped in mystery that escapes the bussle of the day. When images are less clear, stars more bright, and the moon is the strongest candle in the sky; more things are possible, time moves differently. Nothing for me is more beautiful, than when the countryside, hopefully not the road, is covered with snow and the orange-yellow waxed sphere is almost full. You can see critters move in the distance and look almost as surprised as you about the subtle illumination of the landscape. The eyes of the trucks and cars,by far the greatest predator in the taming of our world, are not as harsh as they are on cloudy nights.

The chill in the night air is a reminder that winter is coming. Something is different now and it is in me. The soreness in my throat, the increasing gravel in my voice, and the ever continuous secretions that threaten to choke me unless expelled, shout that these winter nights will not be short. Sleep that I have often found evasive will for periods yet to be determined, escape me. I know to be true what the Starks so often repeated in the Game of Thrones , “Winter is coming and the nights will be long.”   I have for short periods, although it seemed long at the time, been a member of this other group that I speak about; those who are sick, those who are in pain, those who have  yet to find the medicated fairy dust of the sandman. Those who have, often wake up with a different problem. My foe is scratching and clawing at the wall, soon I will leave for Mayo and the battle will truly be engaged. Fear not my stout hearted friends for there are times, not long, when I do that for you. To quote my dad, ‘bravery before battle is little more than a snap shot in time and tells you very little about actions once the battle begins.’ There will be wars and rumour of wars for all of us, they can not be avoided forever. For now I am happy and will enjoy natures beauty tomorrow.  Sleep well my friends, if you still can.

Sunflowers & Windows

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Let the Son-Flower in You

Went with Will to  see sunflowers  today. Will is a religious guy and had the idea of taking a picture of a sunflower and the words above ( his saying) and putting them together to make a poster. I kind of like his photo. Who knows maybe we will. We were hoping we would get an opportunity to shoot some pictures of Sunflowers on a driving run into Kansas; you know get paid to shoot the pictures cause we were delivering something, somewhere. We just haven’t went far enough West to find a good pictures from the road; so we went to the sunflower farm in Lawrence. . It feels different than finding shots on the road, similar to shooting fish in a barrel. It is a little late in the season and we could see the tracks of those who came before us, but there were plenty of flowers still in bloom. It was nice, there was no crowd, in large part the field was ours, no other on lookers, except a young couple, not too young, acting a little silly. At that moment their world consisted of only sunflowers and each other. My voice was a little weak, so I pointed to my camera and said, ‘you look good’; she smiled, nodded yes and mouthed thank you.  So I snapped a few shots from a distance. In some ways it was like a window into the past, somewhere I could never visit again. The wildness I missed in the flowers was some how captured in the openness and playfulness of this young women in a field of sunflowers. Her companion, like me, was really just an observer, she owned the scene. I will never be young again, but love and playfulness is not limited to a certain age, we should never out grow it, I haven’t, I sometimes just spend long periods when I can’t find it. When you are faced with losing your ability to eat, to breath normally and maybe life itself, you start to focus on what you hold sacred.  God in his grace, gives these moments to everyone, I hope I didn’t squander too many.

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Will and the Sunflowers

 

 

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Unknown Sunflower Girl

 

Who is Your Neighbor?

Below is a picture and some words  Will and myself put together for a former neighbor, although I am not sure she ever received it.She is a former neighbor because her husband, about my age, died of cancer a few years ago and not too long after, she had to move. There family affected my life in many ways. For example,  it is doubtful I would have the nerve to write this if wasn’t for them. I have on occasion been called anti-social by some not others; anyway, I am one of those guys who says,’ I not a funeral person’. I am not sure what a funeral person looks like, but, I knew I wasn’t one. People like me believe everyone will be happier if we don’t go. I was home schooling my son Wyatt, so I was in a bit of dilemma. I have no problem rationalizing my own goofy thoughts, but draw the line at teaching them to others. So we went.

Chris’s funeral changed my mind about a lot of things.  It was a reasonable large funeral and I knew very few of the people there. Lisa (the wife) and his two kids were kind and seem to appreciate our presence. I told Wyatt we would sit in the very back that way we could pay our respects and be reasonably sure we weren’t bothering anyone. OK, so maybe I pass along some of my goofy thoughts.  We sat in back. At one point toward the end, the minister asked if anyone had anything they wanted to say. There were nice some little stories, but none that spoke to the Chris I knew. I told Wyatt, “to use Pastor Carl’s vernacular, the Lord as put it on my heart to say a few words”. So I marched up to front and took a really deep breathe and said, most of you don’t know me, I am Wade. I have only known Chris for about twelve years   and I am just a neighbor. But that’s the thing, if  you live by the Brummet’s  there is no such thing as just a neighbor. I am no biblical scholar but I’m pretty sure Jesus had something to say about the topic. He seems to think it was kind of a big deal.

When you have a special needs son like I do, it is easy for people to walk on by, to not get involved. I was certainly not looking for anyone to get involved. This was my  problem and I would do my best to handle it. That is not what happened. The Brummet’s did more than stop. Lisa had a background in nursing and offered to watch Wyatt and Will. We accepted, for first time in several years I went out for dinner with just my wife. Their two kids, who were older than mine and definitely higher on the cool scale; befriended my two kids. Nothing a parent can do helps their kids confidence as much as being accepted by an older, cool kid. Will went with them to all their church youth activities, including 3 day camps. It is still the only times Will as spent a night without his sister,mom or me. So if someone asks me who is my neighbor, I will know the answer. If someone asks what was Chris’s legacy , he was as a good neighbor and a family man. ( pointing to his kids)Those two young, and do mean young adults are a walking tribute;  Did you noticed how they have conducted themselves during a very difficult time, and on this most difficult day.

I quickly walked down the aisle and motioned to Wyatt to follow me. When I went through the back doors into the lobby area, a man ask me to come over and sit down; there are some people want to speak to you. Trying not look petrified in front of my son, I said sure. I spent the next forty-five minutes having people I didn’t know tell me how much they appreciated my words. Lisa also made it clear how much my thoughts meant to her. When it was all over, I turned to Wyatt and said, ‘some people just never quit teaching you important lessons’. As we pulled in the driveway , I asked Wyatt, ‘what did you learn today?’ He thought for a minute and said, “Sometimes you have to risk rejection to be nice.” I smiled and said, “maybe, just maybe, I am not a complete failure.”

 

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Between Hope and Despair there is Life

I went to bed last night without the sounds of the crickets or the hoot of our resident owl, instead their was a gentle hum of a cpap machine. It belongs to my brother in-law who gave up a golf trip to accompany me on my holiday of  exploration. He is retired now and I am assured that he has the time. Golf is not just game, it has saved him from his retirement, it has provided the motivation to engage. This engagement is not limited only to the sport, but to in life in general. It was a sacrifice for him to give it up.

I can not dwell on his kindness because at this moment, it only serves to make me feel more diminished. I do not ask myself how I am I doing, sometimes however, I ask, ‘were am I at in this process’. To accurately answer this question, one needs to honestly look for and find the location of two poles; despair and hope.  It is not as simple as it appears my friends because when you look  at despair it must be much distinguish from the acceptance of facts, but then again, do you, really? In addition, the line between self-delusion and hope is not always clear on a foggy day. Despair is closer this morning than it as been. I am at Mayo’s, and provided the PET scan turns out good, what was inoperable is operable, why? simple put, because they are Mayo’s. To say it is different kind of hospital would not explain anything. My son, Will, when they got home from dinner last night, said, ‘it is more than a hospital, it is the town center and everyone and every business respects it’s people and patients. It is like the whole town was created for one purpose, for sick people to get better. Then he smiled at me and said, it is not heaven, not everyone gets better; some die and some don’t die, but don’t really get better’. Will has cerebral palsy, he knows a little bit about getting just a little better.

When I write these post things, they are about me. I have failed if they are only about me. I want them to touch on themes we all face. This is about hope and it’s counterpart despair. What does each truly mean mean. Is there a time for every season, and if so, when is it. If you are somewhat confused then join the club. Perhaps I have descended into meaningless gibberish. I have returned , I have crawled back to surface where life exists on a normal plane. On this level of existence, I will say things like, yes it looks very promising, there may be some difficult moments. Eating will be very problematic and there will be an ongoing threat of aspiration, but with lots of therapy and hard work with the exercise program, I might be able to eat something at some time in the future, sometimes. You know, feeding tubes aren’t that bad, I hear you get use to them.That my readers is if everything goes well. Let’s stay hopeful.

It a few hours I will go for my pet scan, if it turns out bad then all bets are off, in the doctors words, there will be no reason for the operation, we’ll come up with some treatment, but we will no longer be looking at a cure. He seems reasonably sure it will come back good.  As for my desires, the stronger pull is that it will turn out as predicted, but there is part of me that would sigh with relief if it came back bad. Say good-bye to the doctors and just do what I can for as long as I can and call it a day.   I don’t know, is that despair or just weakness, maybe it is something else entirely. I am not sure, is it possible just different ways of looking at good and bad.

This is what I think, as long as there is life there is hope, the more important question is, hope for what? Sometimes life can give you more than you can ever imagine and sometimes a lot less. Mostly it will give a little more in some places and a little less in others. Remember this, life without hope is questionable at best; so look for it. Often, we can’t see it till it is taken away.

love to hear your comments

Term Limits

There are important terms I should ponder, as I wait! Some how feeling more than stripped naked in this grown that ties in the back; which manages to hide even less of my vulnerability than my dark humor that elicits the occasional nervous laugh. The terms for the day are squamous cell carcinoma, staging,radiation, chemo, inoperable and the crowd favorite ‘five year survival rate”.  These descriptions and predictions cannot hold my interest, my mind is occupied by a single word that is both wider in scope and deeply personal. They do however produce a kind of nervous boredom similar to the effect the ongoing delays have on the people around me. These serious terms speak the unchallenged language of science. While their necessity is undeniable, at this particular moment their objectivity strikes me as temporary and hollow. My word has an almost spiritual bent and I find that the solidity and permanence of it’s subjectivity addresses the essence of what it means to be human. The chatter in the hallway foretells the coming of the sandman to finally put me out. As he positions me for my ride, in a somewhat hoarse voice I speak the word ‘friend’. Thinking I am talking to him, he pats me on the head. In the quiet before his fairy dust works it’s magic, though miles away, I hear my friends voice and realize I will always hear his voice and know the peace of his wife’s heartfelt hug. It seems my beliefs contain science but is not bound by it; for how could it ever explain my friend and his wife.  Feeling both lucky and less, but not less than lucky, I smile and go to sleep.

Thankswade

The Big C -Retribution

 

Before I start I want to clear up any misconceptions about the title, I do not think cancer is a curse from God, although it could be an interesting topic of conversation.The word retribution is meant to reflect my case and my case alone. My cancer is more than likely the result of actions with foreseeable consequences. For future reference I will seldom be putting in disclaimers, political correctness is not high on my priority list right now.

Hello,cancer guy here, I call myself that because I had a good friend who didn’t want to be known as cancer guy. The decision of whether to keep it secret was taken away from me. My son was in the office with me when the doctor told me I had a tumor on my epiglottis, that it was cancerous,and was caused by my history of smoking. This is the son you never reveal a Christmas gift to, unless your floating a trial balloon. So one way or the other,the word was going to spread rapidly.So I am going public in a way that is truly bazaar for some one who uses a flip phone and thinks social media means you get an occasional e-mail.

Upon hearing this, I was kind of in a state of maybe not shock, but at the very least, sorry Doc,could you run that by me one more time. I have known several people with cancer,some have died tragic deaths,even those who survived would not describe the experience as a walk in the park. Those people were all victims, I am the perpetrator of my own disaster,and what about it’s affect on people who depend on me.So maybe I am selfish, luckily I grew up Lutheran,we founded that whole saved by grace thing.  I do not try to divert the responsibility of my actions on the tobacco companies. I did not smoke because I saw an ad on TV that made it look cool, it didn’t. I really, really liked to smoke.It is true,that I do not feel as guilty as many would like and do not feel relieved that my bad actions are being punished.   I’m not a big fan of purgatory, I want the best possible outcome.That is not completely true, I want to wake up and find I have been in some kind of Dickens’s like slumber.

When you write, it is best if you know what you want to say, good thing I am not a writer;I am a delivery driver. I have made numerous bad decisions in my life and now me and those I love will pay the price. It seems it is true that the sins of the father are visited upon the son or children because it is not gender specific. It varies, sometimes I am more afraid of death and other times survival. I still have not mastered the talent of true altruism.I don’t want to be cancer guy, I don’t want to have cancer, I can’t afford it. Let me go back to being the only person that don’t text and thinks a phone is something you talk on. If you don’t mind,I would prefer to be called flip phone guy or dinosaur; but that was my old identity, my children always tell me I need to learn to embrace change, sometimes it is cruel master, even if deserved.  Now that I have confessed my quilt,I see no reason to dwell on it.

So come join me when you can on this misadventure, I will laugh when I can and hide my tears when I must. Hopefully we will discuss issues that affect us all, from a slightly different perspective. I say goodbye for now and will continue this conversation later,if anybody is interested, probably even if their not.

Communication Disease -(Possible Cure Restores Loving Relationships)

 

This may seem counter-intuitive to people who don’t measure their marriage and relationships in decades, my marriage is a tad over four; but at some point the ability to communicate with your spouse starts to decline. It is a general trend and will have variations along the way, but the direction is clear, even if the cause isn’t it.  It is not a general law, to the best of my knowledge Newton stayed clear of this area, but I can confidently speculate it doesn’t have to be this way. The point I would like to submit to you the jury is the fact that it is not true with friends. It may become quickly awkward to talk to a friend you haven’t seen since high school, but that is not a life long friend, that was someone you knew in high school. I am talking about people you have  continued to see and talk to over time. These friends are able to understand what you mean even if you don’t know how to explain it. Whereas a longtime spouse can totally misinterpret your comments even when you know exactly what you’re trying to say. And when you subtly suggest, In fact, it is very clear what your trying to say and have you considered the problem may lie in the part of her brain that processes the sound waves coming in through her ears and that it might be a good idea if she has it check out.

At this point, she normally explains that there is no need. She knows exactly what is wrong and has known for along time now. Her explanation can best be described as a wear and tear theory. According to this theory, I have, over time, wore down her ability to expect cooperation and consideration from me, so the only logical thing to do is to respond irrationally and make communication as difficult as possible, because maybe then, I will want to talk to her. In an effort to be accurate, I was paraphrasing her remarks, it was not a direct quote.  It is important to keep in mind that we are talking about old relationships, this can be a good thing because your spouse’s disappointment in you is expected, so therefore, no cause for alarm; like arthritis,  most of the time the best thing to do is to just grin and bare it. There is no cure, mostly you just avoid things that particularly aggravate it. You know, many of the things you use to think were fun.

So you can imagine my surprise when I thought I found the cure. Like most cures it did have a few side effects, I am talking about the communication disease, sorry arthritis sufferers. Solving the communication problem is no small thing. Just imagine sitting down with your spouse and seeing love in their eyes, she is trying to anticipate your needs, make sense out what your saying and make sure you feel wanted. Pretty amazing uh, ok, now the side effects, they are too long to list so I will sum them up in one word, cancer. Before you jump up and grab the nearest cigarette or other nearby carcinogens; I may have jump the gun. It is beginning to look like the communication disease was only in remission.  I didn’t know;  being a cancer newbie I was hoping this was an unforeseen benefit. I would appreciate any help on the topic from those of you with more experience.It only took one silly mix up about some medical papers for her realize I was still me. The same person I was before, I hadn’t been reborn into a new more lovable version, the only difference, I was diseased. I felt sorry for her, I know she was hoping for something different. It is very difficult to be the spouse of someone with cancer. It always sucks.  When you are not financially equipped  to handle such an occurrence, there is a whole layer of additional problems that can be just as long term and devastating to the ones who depended on you. Given these circumstances or any circumstances the change in our relationship had been nothing short of a miracle. I am not ready to go back to some sort of status quo.Excuse me, I got interrupted by call, it was her, the conversation was pleasant, reasonable and it was good. Perhaps there is hope, wouldn’t it be better for both parties to go through this knowing they are loved and loving in kind. Easy for me to say, I’m the one with cancer.