Hope Revealed

I have been thinking about Hope. The real meaning of the concept, for me anyway, is easily missed. The word is too easy to say as a throwaway thought: “I hope it rains today. I hope you have a good time.” But in a greater sense, it requires a pause, and a careful new thought to appreciate its strength--and its weakness. I have lived with “hope” in my vernacular for 48 years now, and I think I really only understood its subtlety a few weeks ago.

I have been talking with a trained therapist about pain. Since the bowel obstruction occurred in late October, pain has been constantly with me. I don’t know why this is the case, because it was supposed to go away after my surgery. But it pulls on my abdomen all night. It nags after meals, and if I haven’t eaten and my stomach is empty, it sends sharp messages to let me know I need to put food into the process. And the damn tube is aching as well, more later in the day after sitting for awhile. These days, pain is hardly ever not with me in some form. It’s so tiring.

So I have been talking with someone trained in how to manage it. Her specialty is post-traumatic stress disorder. She sits across from me in a classic therapist’s office with comfortable couches and Kleenex, and asks me to describe the pain in a single word. “Weakness” comes to mind among five or so other words. We decide “weakness” is the word that most describes where my thoughts go when the pain takes a mental front seat.

She then asks me to dwell on that feeling and its effects on me. She tells me, "Hold them for ten seconds in my thoughts, and then let my mind go, noticing the words and images that come." I am not yet sure where this is going, but I comply. My mind tumbles forward, building on the word “weakness.”

After two or three minutes, she breaks me out of the thoughts. We talk about them for a short time. And then she asks me to pick up where those thoughts ended and let my mind begin again from there.

It’s surprising that it doesn’t cover ground it has just run across. It leaves it behind and finds new articulations of my situation, each time deeper inside my psyche than the last. And each time looking at the original pain from a different vantage point, showing me how it affects me in ways that I haven’t uncovered until now.

We do this maybe seven times until Hope comes into my mind. I find it buried several minutes beneath “fear.” It is the guarded hope that this pain will one day be behind me, and I will feel physically normal again, able to be present without feeling my body under me. Able to be happy and with my family without first making the conscious choice to do so by ignoring the pain and all it signifies.

And I realize for the first time in my life that without pain, fear, sadness, failure, death…, there is no Hope. The concept of Hope depends on undesirable outcomes for its very existence. Without the very real possibility that I will never be whole again, the hope for a revitalized life is not necessary. 

It hardly ever crosses our minds when we are healthy to hope that we stay that way. We may pray for it. We may be thankful for it. But we don’t hope for it.

Somehow this realization that Hope depends on imperfection and uncertainty helps me appreciate what it means to have it at all. Because it’s uncertain, I appreciate its presence with me and my family. I can grasp its importance as a buoy for my drowning thoughts.

There is good news on this front. I have recently been added to a very unique liver list. It’s not the classic liver list that we are all familiar with in theory. That list is called the “in-criteria liver list.” An “in-criteria” liver is one that comes from a healthy individual, under sixty, without a jail record or history of drug use, etc. These livers are jokingly called “prom-king livers” because it immediately conjures the concept of a young kid, drinking and driving on prom night who unwittingly saves someone’s life through the loss of their own. It’s a tragic moniker, but now that we know it we will never forget it.

I am on the “out-of-criteria liver list” because my cancer was slightly too large when they found it. These are the livers from the people that Jesus hung out with. They are the drug abuser livers, the chronically-ill person livers, the jail-bird livers. They may also be livers from an older person, or a person who has too much fat. These are commonly called the “ex-convict livers.” I am honored to be the potential recipient of their gift of life.  

Classic liver recipients are not generally healthy enough to receive these livers, and a liver transplant using one of these livers might not be successful with someone who has cirrhosis and is close to death. But I, I am a great candidate for these ex-convict livers. My body, ironically, is healthy enough to receive one of these livers and live through it. I can tolerate the time it takes for the liver to adjust to a healthy person’s body.

The good news here is that the out-of-criteria list is relatively short: I am already number two on the list with my blood type and body size. They’re also only allocated on a hospital-by-hospital basis instead of a nation-wide, government-regulated regional list. The Methodist Hospital in Houston is one of the only hospitals in the South to transplant convict livers, so they get all of them in the area; Fat Southern Ex-Convicts Give Good Liver!

More good news is that my  doctor, Dr. Ghobrial, is very experienced with ex-convict livers, having used them for decades now. And even better, he has a good record of success with them.

And the final piece of good news is that he and his physician’s assistant, Dawn, are deeply kind people who want me to live. They want to save me. In fact, they have—gasp—proactively reached out to me with emails telling me they are praying for me and rooting for me this Holiday Season. They want me to live. I am glad to have them on Team Wade.

But because I understand I may not get a liver, or may not get one in time, I can also appreciate what it means to hope for one.

To hope for one means to hope to remain present on the sidelines or in the stands, to remain cheerfully in the snow where a sled track runs down a hill to a kick-ass jump, to remain quietly on a walk through a forest with my kids looking for critter trails, in the auditorium for a dance recital, or at a special dinner with my wife. It means getting to be a dad and a husband. It means walking through an autumn field, sitting with friends, petting my dog, driving my jeep…. In short it means living, and enjoying it for a few more years if not decades—and without pain. 

Hope is the longing and determination to achieve a triumphant survey over past obstacles and struggles. Like a hike up a long, steep and rocky mountain trail, hope is the vision of standing at the summit, looking out over the checkered valley below as clouds cascade upward one on top of the other against cliffs that fall thousands of feet beneath me. Being there on that crest is the point of beginning the trail at all—reaching the summit. And for me, my reward is so much richer than a view and sense of accomplishment. It’s a beating heart and an evolving mind.

I live with the pain for now, such as it is. But I know the reward as well. It is a normal life. And I have tasted that before. I know what it’s like to feel good, to throw a ball a long way and watch it spiral into my son's hands, to stay up late talking, to sit through a movie. I know that is what I am hoping to regain. Without the pain of today, hope would remain foreign and intangible; lost because I wouldn’t need it. Without pain, I wouldn’t have these thoughts at all.

From the mud-soaked arms of the fighting soldier, hope is warmth and home.

From the tired legs of the cyclist, hope offers the cold beer and warm burn of accomplishment.

From the red eyes of the post all-nighter, hope holds honor roll and college admission.

From the anxious sender of a secretly passed note, hope may be a girlfriend or boyfriend.

… Without the black, sad version of the above, the lighted Hope doesn’t exist.

This “Wade revelation” may not apply to everyone’s experience with Hope. My wife has lived with an appreciation of Hope for decades. It wakes her up in the morning and keeps her infectious smile in place throughout the day. Thank God. She hopes for the same things I do, but her hope lives without the burden of seeing the potential negatives.

Maybe it’s needless to say, but I am a little jealous. Her version is an upbeat soundtrack that starts with coffee. My version is a bleary-eyed walk across a hard-packed dessert, focusing on water and bootless, stretched out relaxation at the end.

Nevertheless, we hope for the same things.

And I hope Hope makes a difference.

Pain by Request

Tomorrow is Debra’s birthday, November 16th. Each year it sneaks up on me. I set reminders. I send myself notes. And like a bad sitcom character from the 80s, it still surprises me in the last few days leading up to it, “Wha??!!”

Each year in the past, I have run down to the car wash to get a card. Which is curious. Why are all the good cards at the car wash? But they are. They are far better than anywhere else. Anyway, I go there and get a blank card. And I write a note to her that is always intimidating to start, but once in process makes an attempt to express my appreciation that she picked me, and that she stays with me as a best friend. Even now, with all my ailments, she is with me. What a beauty both inside and out. 

This time was different though. I really did have a pretty good excuse for not getting a card or writing something in advance. 

A few weeks ago now, I was sitting on the front porch of a friend’s house and he told me something that made me stop and think. He said he liked my writing but that I was only giving him (and anyone else reading what I write) “half the loaf.” He felt that I was short-changing anyone reading my various notes because I wasn’t sharing the pain that accompanies these experiences; the pain for me, for Debra, for my family. This input is from a thoughtful guy, and the feedback was unusual. It wasn’t expected. And I have been mulling it over. 

So I decided to relay the last few weeks of our experience in an unvarnished style to see where it takes me; takes us. I want to see what it reveals about what’s inside, going unsaid, to me and others. What am I denying to myself? And what am I denying to others? 

I thought I was being pretty honest, but learning these days is never boring, so I am diving in. I apologize in advance if this is tedious. It’s kind of a “stream of consciousness” account of the past few weeks, hitting on painful points. 

On Tuesday, October 20th, I started up with chemotherapy again. I have been off since June 24th of this past summer. Tuesday I got an infusion of Gemcitobine that kicked me flat. I was out that night with nausea and fatigue by 8 pm. It was a harrowing night with dramas for Debra and Cate, but I was too sick to help or be present. I could hear the discussions and tears but I could not rally myself from my bed no matter how many times I told myself that these are moments I don’t want to miss. That was the beginning.

Deb was amazing and wise with Cate, and Cate came through as strong as ever after a long night. I was nauseous all day the next day, but worked a few hours. I worked again Thursday and Friday, again nauseous and uncomfortable, but pulling together various things to keep my job in place and avoid any income disruption or family health coverage. My job is important to me, and so I work hard to put in the hours and value when and where I can. It’s a contract I hold dear. 

The weekend came and with it some relief. Since I didn’t have to sit and work, I was able to keep busy walking around doing various things and that helped distract me from the constant belly cramps and discomfort I had been feeling since the Tuesday before. 

I don’t make notice of these discomforts to my family, but Debra sees. It worries her. I can tell her stress is aggravated by my pain and hurting, so I try to suppress it as much as possible. Sometimes I scratch my belly to change the sensation I feel. She catches me sometimes, and I see her worry. 

We support one another though, me through my slight of hand tricks to hide my discomfort, and her with a little bit of supportive belief that it’s not hurting much. 

On Monday, October 26th I went into work and worked a full day. Again on my birthday, October 27th, I was in the office and working with people to pull together articles and product information. I left at about 6 pm and went home to relax with my family. 

My birthday night was wonderful. We carved pumpkins. Ben’s was Frankenstein and he did most of the carving himself with my hacksaw. He was aggressive, but careful. I was careful too ☺. Cate’s was nicknamed “Cleveland.” And Will’s had pumpkin barf hanging out the mouth. 

When Ben touched his own pumpkin’s “pumpkin barf,” Ben barfed some in the trashcan and we all laughed, including Ben. It’s a long-standing tradition to carve these pumpkins, and always generates a set of pictures that we cherish. 

Wednesday, I went to work again and had a working lunch with a new colleague. At lunch my stomach began to really hurt; cramps would crawl across the front of my abdomen from left to right, making me stop walking, or talking, and bear through them.

I worked in the office until about 3:30 and then returned home to work in my office. I kept after it until after 5, but ultimately had to come downstairs to let Debra know what was going on. “Deb,” I told her, “I know you will want to take drastic action, but just let my stomach work through this. I will be okay. But I need to lie down.” She agreed to let me lie down to see what happened, and I laid on our bed, ready to bear it out.

The pains continued but worsened and intensified. Each two minutes, I would be wracked in pain up and across my abdomen and have to breathe through the ensuing 30 seconds while my guts contracted and moved, causing me face-twisting pain and labored breaths. This was not normal.

About an hour later I called to Debra to tell her I didn’t think it would stop, and that as much as I hated it, we needed to consider going to the ER. She called our dear friend Julie Sweat and she confirmed that we should head in.

We arranged the kids to be with Deb’s parents for the night, and left for Seton. At Seton I received dilotid (synthetic morphine), which did nothing for the pain. Next I received morphine, which stopped my pain cold, along with my bowels.

It also sent me to kooky land where I lingered and conversed with my poor wife, holding my hand by my ER stretcher at midnight on a Wednesday. We had already been through a lot. But this pain was new, and we were uncovering some new issue with my broken body. Her high stress was made even higher, and I was lying next to her, totally unable to do anything but look at her and tell her I was sorry she was having to go through this with me. Sorry that my body was screwed up, causing us so much uncertainty and anxiety.

Seton was a short stay. I was in for Wednesday night through Friday night. I worked half to three-quarter days on Thursday and Friday. Health wise, we discovered that the pain was from a small bowel obstruction, and that they generally dissipate over a few days. I ate soft food for a day, and went home in time for the kids’ Halloween costumes.

I got to drop Will at a friend’s house for a Halloween party. He wore his Kyrie Irving jersey. And then I got to go sit on the front porch at the Donovan’s on Spring Street and engage with hundreds of trick or treaters and several dear friends. Halloween is my favorite holiday for a lot of reasons. It always has been. My birthday falls so close to the day that I always had Halloween-themed parties. And I have always loved the cool weather, fall colors, late nights, candy, and costumes. That was Saturday.

Sunday I awoke with the same terrible pains at about 5 in the morning. Debra went about arranging for the kids to be in various places, which is hard on them and us, and then she and I left for MD Anderson late that evening to see if we could get to the bottom of the issue. That was November 1.

I entered the ER here at MDA, and had to stop several times, gripping the handrails while walking to my room because of the pain, which was now nearly constant at very high levels (5), with points of severe intensity (8). The nurse helped me onto the stretcher and I immediately threw-up. There was nothing except digestive juice, but there was a lot and it alarmed the health staff to move quickly into action.

They numbed me up with morphine again and put me through a CT scan, which provides images of your bowels. Again, the analyst saw the small bowel obstruction we first saw at Seton, but this time it was fully closed, causing intense pain as the bowels tried to push whatever was in my intestines through from one side of the blockage to the other.

To solve the situation, the ER staff shoved a 55 cm tube up my nose and into my belly to suck the contents of my stomach out to relieve the pressure and pain. This is called an NG tube. The process takes about a minute and a half, and is very painful and uncomfortable as the nurse advances the tube and the patient tries to “swallow” it. Deb left the room as I struggled through the process. Afterward, they tape the tube to your nostril and apply suction through a container on the wall.

Over the course of the next two days, it pulled two liters out of my belly and intestines. The pain was still there, but had eased relative to its peak. I was fairly numbed to the world with morphine. I was down to 138 pounds from 151 at the beginning of the ordeal.

We had various doctors stopping in, and late in the second day of being at MDA, we had a superb doctor named Dr. Bednarski come by. It was dark outside and Debra and I were exhausted from suffering and stress. I put that Dr. B is superb because indeed he has turned out to be just that. The first night we met him though, he bluntly told us that I might have cancer throughout my abdomen, and that as a result I might need to have a large chunk of my bowels removed leaving a “stoma” bag on my hip for the rest of my life. This is a bag to hold your intestinal output because you never use the bathroom again.

After all the physical suffering I had been through and all the stress Debra had been through, this information was just overwhelming. We wept.

I am active and involved with my kids. To have a bag of intestinal fluid on my hip would just be devastating. To have cancer throughout my bowels would be a death sentence, and a long and painful one. It was a dark, dark night.

The morphine ultimately delivered me to dreamless sleep, but Deb had to go home alone. Through my morphine haze, I can still remember being deeply troubled for her as she left the hospital, and I lay helpless and drugged, unable to comfort her or help her in any way other than to pray for her comfort and strength from family, God, and friends. All of those people came through for us. But that was a long night we won’t forget.

Over the course of the next few days, we waited to see if the bowel obstruction would “just resolve,” as some 90% of them do. Of course it didn’t. But the fluid coming out of the NG tube reduced and changed color to something less alarming, so the staff decided to remove the tube. It felt wonderful coming out, and I had relief for some time.

But within a day, my stomach was cramping with intense pain again. I took a shot of morphine and immediately threw-up. The doctors decided the blockage was not open, obviously, and they needed to reinsert the NG tube.  

I had to go through the whole process again, but this time with the tube advanced to 65 cm instead of 55 cm since the last tube was hurting me pretty severely. The new tube took three tries to get into my stomach. I was on morphine, atavan and dilotid. (Today, November 15, the scab from the first tube is finally coming off my nostril. The second tube did not hurt me nearly so badly, but was very uncomfortable. My lips peeled and my throat was constantly in pain. Swallowing hurt.)

Since Sunday, November 1, I had not been able to work due to pain and / or nausea. This was very stressful since I feel obligated to work every moment that I am physically able to do so. The company is taking care of me and I need to honor their commitment. This added a great deal of stress to Debra and me about my job security.

Meanwhile, the surgical oncology team decided to take me to surgery on Tuesday, November 10^th. The surgery turned out to be successful – no cancer and no stoma bag!! Thank you, God! I heard from my other doctor, Dr. Bellister, a fabulous person, that as soon as I was wheeled from the operating room, I came out of my anesthesia and said, “Stoma? Cancer?” To which he replied, “Nope. Neither one.” He said I was the earliest patient he had ever seen who asked these questions. We laughed about it, but the stress of those two dooming outcomes loomed in my head even as I slowly pushed my way into consciousness.

I have been once again rerouted inside. However, I could not go to the restroom by the allotted time that night, and without going into details had to have a procedure that hurt terribly to allow me to empty my bladder. I worked all night to use the bathroom after that, and finally did at about 5:30 am. If I had not by 6 am, it would have been the procedure again. Suffice to say I was motivated. I slept most of that next day with Debra by me.

Over the course of the next few days, I developed a cough and sneeze from the NG tube. As you can imagine, with a new scar on your stomach, stapled closed, coughing and sneezing is very painful. I still have it, and continue to awaken many times at night just before a coughing fit or a sneeze. Drinking water helps, so I keep some handy.

And we also discovered that the reason morphine is so effective at bowel pain relief is because it completely shuts down my bowels. Since I was trying to get them moving after surgery, I greatly stepped back my pain medication so the bowels would not be paralyzed. That increased my surgery pain of course.  

Then my biliary drain came loose, moving out of my exit wound by about 3 inches, and bile began to leak down my stomach while I was walking the halls to get my bowels to wake up. (This was one of those moments where I just felt like the world was against me and my family. I mean seriously. What next?)

The surgeon Dr. Bellister showed up late in the day to take a look. I told him I was worried about walking with the loose drain. He absolutely wants me to walk, so he opened a surgical kit, took out a needle and suture, and inserted a set of retention stitches with no topical anesthesia. I don’t resent this, but I tell you simply because it happened and I want to honestly portray all we have been through. I love that surgeon, but those stitches hurt. As fate would have it, Deb was grabbing a chicken sandwich downstairs. She missed the whole thing, and I am happy for that. My nurse, Camille, was a stand-in hand to hold. She was a great stand-in.

Then the surgical IV placed on Tuesday came loose and we had to replace that. Removing it was terribly painful because the tape had folded over on itself in several places, trapping my wrist hair and taking large chunks of it out when we removed the IV.

The surgical anesthesiologist did not shave my arm even though she assured me she would. If I ever see her I will tell her that she should have kept her word, after I refrain from punching her in the chops. Pulling that IV out hurt a lot and it would have been so easy to shave my arm. It would have helped me avoid so much discomfort.

The nurse that showed up to put in the new IV used a sonogram machine to do it. I have never seen that before, but somehow, it took twice as long to do it and hurt twice as badly. I am not a fan of the “new method.”

Debra finally went home Saturday morning and was reunited with our kids. They have been with her parents and friends for two weeks now. Each one is doing okay, but it’s hard to not have a dad around. Cate is living with the Mouritsens and studying for finals. She has been doing well, and the Mouritsens have been a wonderful stand-in family. It has been very reassuring to talk with Cate and the Mouritsen family during our absence.

Will is doing well too and showing no visible signs of the stress. He went through tryouts and made the basketball team while I was in the hospital. This was so hard for me. He and I take walks and talk about his days. These tryouts have been on both our minds for weeks and I was absent for the whole ordeal. I think maybe Deb and I were happier to hear he made the team than even he was.

Ben has been doing so well. He talks with the wonderful Jennifer Dugan at Trinity and she sends Deb and me updates on him and how he’s holding up. But he cracked a little on Saturday after a pretty tough basketball game. His opponent gave him an “Indian sunburn” while guarding him, dead-legged him, hit him in the head, and punched him “about five times.” I talked to him on FaceTime and he showed me where his arm was red. I told him I wish I had been there to see his toughness and how he fought through the aggressive behavior.

But later he broke down to Debra and told her he wanted things to go back to how they were before I had cancer. He wanted me there at the game cheering for him. That is so hard on Ben, but it’s also hard on Debra and me. I miss those opportunities as much or more than any of my kids. I cherish them, and in a strange way, it’s reassuring to hear that Ben wanted me there. As I have experienced, that will not always be the case. So, while it hurts now to be absent when I was needed, it is also dear to me.

Debra is staying again home Sunday and Monday night the 16^th to be with our kids. She will be with Ben at Trinity Chapel for her birthday, which is a big deal for Ben and her. I will get snaps from Deb’s supportive friends in the audience. I am so happy she is going to stay.

I go in tomorrow to have the biliary drain evaluated. They will likely replace it, and I will be sleepy and loopy the whole day. Deb’s absence will be a welcome gift since she will be with our friends and kids tomorrow night instead of beside her loopy husband. How I wish I could be there. That is painful for both me and Debra.

The NG tube came out two days ago now. And the doctors tell me I may be able to leave by Wednesday, November 18^th. I have progressed from “clear liquids” to “real liquids” diet, and so far I am keeping them down with very little nausea. My hopes are high that I will be home soon. My physical pain has diminished, and I need to nurse the mental and emotional pain to get healthy again.

I have written my letter to Debra, my very best friend ever, for her birthday. I will send it late tonight so she gets it first thing. I am finally feeling better. I can’t wait to get home so I can try to relax.

But first I will have to resolve work so I can be sure my family remains safe. I will try to get back there by Thursday so I can put things right. Until they are back in place, my anxiety is high.

I am not sure what this note has done for me, if anything. I will put it out there and see what different reactions come from those who read it and pray for us. The reactions always come from both expected and unexpected people, in both expected and unexpected ways. We are always grateful for them. They are a wonderful “narcotic” that has only positive side-effects. Thank you in advance for anything you want to say to us.

If this has helped you in some way, I am grateful. If it’s not been helpful, please just disregard it. My family and I are not seeking sympathy in any way. I am feeling around in the dark a bit here, following some advice that I hope will minister to some. I don’t generally talk about pain, and probably won’t too much anymore. It teaches me lessons. It helps my family move forward by watching it leave. I put it out of my mind and it recedes behind life’s forward momentum. Go Life.

Behind me and my family there is so much physical pain, mental stress, and emotional pain. Ahead of us, there is more. Some of it is too big to get my head around. It hulks darkly beyond the horizon and will punch us in the gut before we’re ready. We’ll reel and teeter, but recover. It will not conquer us. It will fall!

Thank you for praying for us and sending us your positivity. We can use every focused and fleeting instance of goodness you send. We are weathering this, and we will triumph over it in one way or another, but your support is so precious and crucial. Thank you for helping us. Your friendship to me, and to my loved ones is a gift that I never fail to appreciate. Just know that whatever you do for us helps. All of it. Thank you.

Need Some Prayer

I started chemotherapy again the Tuesday before last. It was a very hard week following. I was nauseous and fatigued. I didn’t feel good at all. It was far worse than the previous treatments in terms of after effects. But I made it to the following Tuesday.

That Tuesday, Oct 27, was my birthday. I received the most beautiful cards from Ben, Will, Cate and Debra. Each was so special. I have them here and will put them in a folder for later. I am so fortunate to have a family that loves me.

Then Wednesday rolled around, a week and a day after chemotherapy. My stomach begin to hurt very badly. So badly in fact that I ended up in the ER on Wednesday night with cramps that would just stop me cold.

Seton doctors think it could be a blockage in the small intestine or an infection or, worst case, an adhesion (scar tissue) from my previous surgeries. I got an IV and stopped eating to let the bowel rest and not process any food. I was like that all day Thursday and most of Friday.

I came home Friday night. Doctors recommended a “soft diet” of food that absorbs quickly into the intestines. This includes fish and a few other things. But I am still in a lot of pain.

This is taking a toll on me and my family. We need it to stop. Can you please pray and concentrate on my bowels healing and returning to normal function? I believe we can make a difference, and I am praying and concentrating myself. But more brain power is better. Thank you in advance.

Wade

Limantour Beach, September 24, 2015

Limantour Beach, September 24, 2015

Foreward - I wrote this and sent it out to family a few weeks ago. I needed to put it on the blog, and so here it is. 

This is Limantour Beach looking north. Behind me to the south are dozens of people who made the one hour drive north from San Francisco to Point Reyes National Seashore, where Limantour Beach is located. 

There are only about one hundred people here today, despite the blue sky and crisp, fall weather. Most of them are camped under cheap umbrellas at the mouth of the parking lot; so bizarre when there are literally miles of open airy beach on either side of their little cluster.

Deb and I came to this spirit-swept place with Tom and Karen Hale. After two or three hours talking and eating with them in a wind-sheltered hollow of the dunes, we left them to cat nap on the warm sand as we walked north toward the far away headlands of Tomales Bay, which you can just see at the top of the image.

This is a special beach to Tom and Karen, having spent many hours here through their own journeys. And the stretch in the picture is especially special to me and Debra. Directly at my feet, which are teetering in the unstable sand-and-water combination of a wave’s after wash, is the fading memory of the final “e” in the phrase “Bile Duct Cancer and Scar Tissue.” 

I had methodically written the phrase from north to south, my back to the ocean, and the letters placed above where the waves were reaching so that I would not be rushed, and could contemplate the symbolism of my action and the words themselves. 

I remember being pleased with the overall appearance of the hand-written letters when I had finished. They were big, maybe a foot tall for the capitals. The curve at the bottom of the “t” was pleasing. And I built the “a” like it’s shown here “a,” with the serif touches and little hat on top. Fancy. Attractive. But temporal.

I positioned my self at the end of the phrase so my gaze took it in from stern to stem looking north, and waited for the waves to mount up and take it away. For me, this would be symbolic of this teacher passing from my life, as I have learned so much from it. And since I am now thoughtfully willing it away.

The waves came and went more times than I anticipated, long enough for me to stop waiting expectantly for the “big one” to come and take away the words. 

The elongated pause gave me time to catch up to my expectations and put them at ease. I became present in the moment. I thoughtfully unclasped my hands from behind my back. I allowed my shoulders to relax naturally against the sinews in my neck. I breathed deeply, in through my nose, out through my mouth. My face loosened. My legs and back settled. My toes relaxed in their fight to keep me upright, allowing me to gently sway with the shifting sand and water as they moved under and over my feet. 

As all this happened in me, I lifted my eyes up from the letters. I let them be where they were, etched into the sand, beautiful there where I had written them after so long and so much suffering for me and my family and those I love and would never want to hurt. They were above the healing waves. But I knew they would not be forever. 

I willed them to be gone. And I trusted the energy of God, the Earth, and my support network—you—to align with my will and thoughts and energy to make a bigger wave. 

Maybe that sounds “New Agey” to some of you. I know there is no judgment though. As a matter of opinion, it may indeed be New Age. It is certainly not a way I have looked at my life’s experiences recently, or ever. 

For you all, my closest set of kindred people, I can’t begin to articulate in a short letter the depths of the new possibilities I have been uncovering in the past month. But I’ll try because there is “an ask” at the end of this letter to you. 

This past month since my back became incapacitated has pushed me into new thinking where I have never gone. To uncover the source of my illness, I have dug deep into my past and present and found long-forgotten boxes upon boxes of stacked hurt and shame from many, many years. These are likely present in all of us. But for me, they showed up in prison walls of self-limiting beliefs. 

I carefully sorted through them, felt them again, and forgave. In some cases I forgave my parents. In others I forgave myself. But always I left the hurts behind me, out of my head and where they belong; where they cannot continue to plague my health, physically, mentally, or spiritually. 

It has been liberating. It is cleansing foulness, dirt and filth from my body that I never knew I was carrying. I am healing mentally and spiritually, and as a result I am healing physically. How can I not?

Through this process I have opened up to healthy, constructive thoughts and approaches to situations that have always hammered heavily on my weaknesses. A month after beginning this work, I am stronger and more confident, having rid myself of damaging mental overhead that manifested in physical ailments. I am happier and more content than I have been in decades.

This may sound silly to some of us, that I could be healing physically because of mental forgiveness that I am giving to myself and others. And that is okay. It’s not for everyone. Right now, it’s for me. And its effect has been somewhat revolutionary. 

The waves thumped beside me as I stood, calm, the letters at my feet, beautiful in the sand of Limantour Beach. Breathing deeply, I thought about the cancer and my scar tissue leaving my body, just as the long-held hurts were leaving it. Each wave was too short to take the phrase away. They lapped at the spaces between the letters but did not erode a single, Wade-formed stroke. 

The wind blew diagonally southwestward from the dunes, out across the beach and waves. As it came it dragged angular, dry sand in blurred strokes across the flat, hard packed shore. The sand-tinged wind whipped at my feet, legs, arm and face. It is a sensation all of us share. The sun warmed me, and what hair I have moved with the wind’s energy. 

Waves came and went. My eyes stayed high, and I continued to breathe-in my clear mind and its undeniable positive effects on my body. 

And then, much more quickly than I was ready for, a wave stacked itself on top of another, purposefully tumbling out of the ocean a little further up the beach than its sisters. As it spilled onto the sand, its energy pushed watery remnants up past my words to run a smoothing hand across them, perfectly taking every stroke and every trace of my hurt and footprints away, back to the indiscernible, endless ocean. 

It was erased. No phrase. No footprints.

It is no longer there. 

The cancer and the scar tissue have no power over me anymore. 

Am I cured? To be honest, I am believing so. There is no benefit to doubting it. And only goodness to believing it. 

But the tube remains in my gut and the doctors cannot be sure the cancer is gone yet. We will not abandon conventional medicine, and so I may look and feel terrible some days from treatments. But we are doing our best to render it unnecessary. The best instruments they have can no longer distinguish the bile duct cancer from the scar tissue that surrounds my liver anatomy. Both cancer and scar tissue are milky white in the CT scans and PET scans. If I have cancer, it is hidden within my past injuries. And so the scar tissue must go, just as the cancer has. 

I am continuously learning from the experience of having cancer. I have already learned immensely. I have learned from people who have come into my life as a result of it. I have learned from their actions. My family is more deeply connected with our community than ever before. I have new beliefs and philosophies to grow with. I am a better person, and those around me are too.

I have dug deep and released painful memories. They are no longer in me since I have literally thrown them away from me. And if they are no longer in me, then I no longer need the cancer or scar tissue.

When I think of the cancer and scar tissue, I don’t. I think of a healthy bile duct, unmarred by scar tissue so the scans can clearly show it has healed. And just as important, so the doctors can clearly see that my incurable cancer is cured. 

And likewise this is what I request from you. No prayers for healing. Instead, thankfulness for it. Prayers now for recovery to full health, quickly, so I get back into my active life. 

When you think of me, envision a clean, clear bile duct like the drawing below. All of our thoughts together can stack endless waves on top of others, easily obliterating seemingly indomitable, terminal hurt, just like the “e” that is now only a fading memory.

I will always watch.

There is a moment in a Dad’s life when his son puts his back to him, and feeling no remorse, runs away to something other.

I have experienced this twice. I remember each time. I remember the boy running and not looking back. Although I can’t see their faces – couldn’t – the excitement of the time ahead is captured in their quick, confident steps toward the other place, the other kids, the other-“ness” of something aside from me.

Selfishly I want to say, “Hey! Come back! Tell me goodbye. Give me a chance to hug you and say I love you before letting you go. Let me hang on to you for a second more.” But I don’t. Or at least not at that moment. I let them go away without an informal wave or glance back.

I guess the reason I remember these moments is because of the sadness that accompanies learning some of the lessons we all should learn as Dads.

Learning is good. That is right. I don’t think of true learning in a negative sense. Even when I was young I knew learning was good for me. I was never a kid who moaned, “When am I going to use subjunctive voice?” or “Who needs fractions?” I knew, somehow, that because I was learning these things they were important. I don’t know how I knew. But I remember knowing.

Just like I know now that watching my son run away from me to something else healthy is good for me.

Now, I can’t say that I loved learning fractions. Likewise, I can’t say that I love learning from my boys running away from me. That said, there is a deep respect and appreciation for their development process that I have internalized as a result of watching the event and then doing some serious soul searching afterward.

It happened this morning, Father’s Day, 2015. It’s a Sunday and we went to church. Ben goes to kids’ church, upstairs on the second floor in another building from the main room where Deb and I go. I have climbed those stairs when my legs hurt from cycling the day before and when my legs hurt from muscle atrophy. This morning as I climbed the stairs my legs weren’t kicking it up the required notches to keep up with Ben’s benergy. He raced up as he sometimes does, but instead of turning and welcoming me up to take him to his group, he continued to race forward into the gathering maelstrom of kids, air hockey and brightly clad, smiling leaders.

I was eight or ten steps down as I watched his head bob away from me, each step taking it lower and lower, down toward my sight line, cut off by the top stair. He didn’t turn. He didn’t wave. He ran to his friends.

I watched him go and blessed him silently in the quiet, abandoned and echoing chapel of my head. He is fearless and single-minded when he wants something. So I guess this morning, he wanted to be with others who were thinking and talking about God. That, among other things, is certainly something I hope for him.

I know that some of my friends would look at me with a raised eyebrow if I told them this made an impression on me. Well, seeing your son run away from you can be tough. I am thankful I have been through this once before, and that I can wash my experience this morning with the torn rags of my last one.

The first experience with this phenomenon was about 10 months ago when Will, then 12, went to his first lacrosse practice with the Westlake team. He had been playing with Trinity, our school since his kindergarten, and had no qualms about me being there to watch him, whether it was a practice or a game. But this time was new. He was both excited and nervous.

When I dropped him, I was beside the field in the fire lane. The field was big, and made from those small pieces of black rubber that fume into fantails as NFL players scrape along the ground after making super-human catches. The Westlake players were, to my eyes, intimidating. They wore the crimson of the Westlake Chaparrals, to whom we had lost soundly many times. They were seemingly big. And they were making fine, crisp throws in the late evening air from one lacrosse pocket to another as they warmed up, waiting for others to show up for try-outs.

As I pulled into a convenient slot to watch as Will tried out, he opened the door, “Dad, please don’t stay to watch.” His words hung in the Jeep without any response.

I said “good luck” and drove away, his back, the lacrosse bag, and his light, trotting steps away from me under the lights of tryouts disappearing behind me.

My first reaction was sadness, deep sadness. I grappled with it in a knife fight of reasoning. I slept with it on my pillow. I woke to it in the dim early morning, worn out. And I realized I had seen him grow a bit, rapidly, in a fast-forward, unfair time warp.

What is more inevitable than growth and maturation through living? One way or another, it comes. I realized that Will was struggling with newness and that I was too. When he ran onto the field, helmet on, no head turn, my chest hurt like a broken heart. But once I realized what he was running from, or more accurately, running to, the hurt subsided and I was once again put in a position to demonstrate how much I loved him, this time by watching him go.

I talked through it with him later, after my hurt was no longer in the way.

I love to walk with my kids, and when doing so, barriers diminish themselves with the quiet background of cicadas or crickets or stars or soft, side-by-side steps. Walking, I told him that I have few things in this life that I love more than watching him and his brother play sports. I told him that I am blessed by having boys who know how to handle a lacrosse stick and a basket ball.

And I told him that the next time he needs me to not be present for something, to take my love of watching him into account so that I can prepare myself to let him grow up before my eyes.

To Will’s immense credit he understood what his old Dad was saying. And he invited me to watch other practices, “I don’t care what the other kids think.” I didn’t, but secretly I did. I arrived “early” a few times to see him make shots or passes, and put a smile on my face. I don’t know if he noticed or not. It’s a silent agreement.

When you have a kid, whether girl or boy, you are fortunate that there are moments like these. Moments when you love them so much that their numbered back running away from you is lily sweet. It kills something; something important. But in its place something grows; grows from its passing. Life to that point, with all its walks and movies and proudly-built Legos and watched practices yields a fertile place for an older love.

Nothing comes from nothing.

This learned lesson is borne of a loving father watching his sons and daughters grow up in dappled spots of light. You see them still and unchanging, and suddenly without expectation their evolution is revealed, quickly, mercilessly, lethal. But with careful handling the sadness that accompanies brings new rewards and new depth.

I don’t have that many more of these in my future. My kids are growing up and I am growing knowledgeable about how it feels and what to expect. I am sure there will be others that drive deep into the heart and look expectantly for wisdom. But for now, I can love the back of their heads. I can imagine their faces. And I know their hearts.

And one day without really knowing the lessons they have been teaching me, they will find that they have a close friend who has known them since a time when they looked back to make sure Dad was still there, watching.

I'm Tired, But Not Too Tired.

That title’s not about cancer. Although I am tired of cancer and the tube. It’s been almost a year and it’s a hard road sometimes. One day is harder than the next, and sometimes the inverse is true.

But what I am referring to is when we’re tired and faced with a challenge. The challenge can be anything. It could be a blown water pipe, a burnt turkey, a light that doesn’t work, a drippy oil-pan, a terse spouse, a cable service outage, a failing computer. It’s all part of life and life doesn’t ever give us a break as far as I can tell.

One example that readily pops to mind is when Deb and I are ready for crashing into bed and our kids haven’t been read to, haven’t finished homework, haven’t gotten ready for bed, and so on. You know, it happens. We eat late. We have swim team. We have basketball on the other side of town. Whatever the case, it happens: we’re tired and there’s still time required to be a responsible parent. But more important, there’s still time required to help our kids become responsible grown-up humans.

Sticking with the bed-time example, there are really three options I see here. Option one is to ignore the kids and let them work it out. They need to learn to sleep after all, even if it takes them a few hours. Plus I’ll be snoozing on the other side of the sound-proof wall and their teachers will have to deal with their outlaw attitudes tomorrow.

Option two is to ride herd on the herd, chiding and goading the little fuzzy beasts until they reluctantly get between the sheets having pushed back the whole way. That’s hard in the base case, and when I’m tired it’s a fairly good recipe for conflict.

The third option takes a little more time up front. We gather the furry little humans together, lay out a plan with actions, inactions and consequences, leave them to it, and then deliver on the consequences both good and bad when we return at a specified time. If all goes as planned, they will be in bed in a reasonable amount of time and we will get to square our own things away and then connect with them after they are in wind-down mode.

Of course there are shades of grey throughout those three options, but in essence, those are the broad strokes of the options I see. Each one takes differing levels of engagement and effort: option one, the least, option two, the most, option three, somewhere in the middle. Generally speaking, Deb and I try to do option three the most, ultimately reverting to option one when the behaviors are ingrained.

I haven’t seen the results of my life’s actions yet, but my guess is that option one would result in kids who become adults with very little discipline, wandering from rail to rail on life’s highway. I am guessing kids under option one stay out as late as anyone else regardless of tomorrow’s responsibilities. They would procrastinate until just before the final “S” settles in on RED ALERT CRISIS. Their fridge? Full of space. Their pantry? Half-full of expired Ramen. It’s very likely they would live within the normal distribution of human well-being, but it’s not the bet we are making with our kids.

Option two, again, according to my guesswork before I have really seen the outcomes, results in almost the same thing as option one. Whereas option one adults never had their own responsibility, option two adults only had responsibility through the lens of their parents. So when they're in the real world the parents stay overly engaged in their lives ultimately resulting in resentment in both directions. Did you buy milk? Did you lock the door? Did you change the oil? Did you pay the garbage bill? Did you eat healthy? Did you go to the doctor? Sigh. I’m tired just typing.

Option three? Here’s how I am hoping it works out: option three kids become responsible adults, thinking ahead, taking time to plan and execute, stay on top of projects, consciously decide what and when to eat, and generally live productive lives, even without me.

Who knows? I could be wrong. My big “Option Three Plan” could back-fire and I could end up with criminals. But my hope is that they’re the best criminals; the Kingpins of Crime. Kidding.

The furry beasts (Will arm up, and Ben in goggles) with neighborhood friends.

I have noticed that someone in my family has been really tired lately. Our lives are more stressful these days than ever. While I generally deal with the source of stress and then put it away until I must fully face it again, Debra deals with the source all day, minute by minute, second by second. We are Yin and Yang this way, and we help one another get through life through our complementary habits.

But Wednesday night was different. We had been to see the doctors in San Antonio for another opinion on my health status. Their opinion had more color but was not a prettier picture. Neither of us wanted to hear bad news but we got it, and at the end of the day we were pretty much demolished.

That night I remember Debra vividly behind the kitchen counter at 8:45, already 15 minutes past “in-bed” time for our youngest boy, while both boys were somehow high on adrenaline. I could see the tiredness in Debra’s eyes. I felt it myself. But together we saw the bigger picture.

Option one was appealing. We could just tell them to go to bed, leave it and then crash ourselves.

Option two would get them to bed more quickly, but neither of us had the inclination to ride herd on the Sugar-Pop Boys.

Option three took mental effort to articulate to the wee-tots and then execute, but at the end of the night it resulted in the boys taking care of themselves for the small stuff until they were in bed, and the two of us being able to swoop in for those important last thirty minutes of the day when we connect without the noise of homework, pictures, texts, squabbles, clean-ups, brushings, and whatnots. Further, it allowed us to help one another recharge while they calmed down.

I guess the bigger lesson is that we all get tired: tired of school work, tired of real work, tired of listening with the intent to understand, tired of spaghetti, tired of making conversation, tired of putting up with other people’s annoying behaviors, tired of a lot of things in life.

But if we stop and think for a second or five, the benefit of working just a bit harder for just a moment longer might be able to be determined. The tiredness can be shoved aside for a moment and the benefit can be nurtured to the surface.

It’s identifying the benefit when we’re so tired that can be the most challenging. That’s the real skill here. Once you see the benefit you just might be able to take actions that bring it to fruition.

This observation can apply to almost anything. I have personally seen it apply to my marriage and family, my work, my cancer, my dog, my friendships, my workbench, really just about everything. And I believe I have observed it in my close friends as they applied it to me, giving me patience when I was the challenge they faced.

I’m tired, sure. We all are. But it helps me to remember that almost every single encounter has a positive and / or negative outcome depending on how we engage it.

Pausing to see the possibility for the positive helps me push being tired out of the way so goodness comes from its challenges. It’s not easy. It’s not obvious. It’s not the first reaction either. But it just might pay off. I am betting my life on it. 

British Rail

I had Ben this past Sunday and was driving him to a Ben-sized lacrosse game. He was tired but excited to play. He had on his helmet and pads already and was looking out the back window. I had NPR on the radio instead of my normal practice of listening to Ben’s favorite songs over and over.

On this particular day, rain clouds had been fighting a winning skirmish with blue sky, and tiny drops dotted my windshield. From NPR, an Irish voice filled the cabin. It was a man, maybe thirty, telling a story of traveling to Leeds from London to be with his mother. She was not doing well, and in fact was dying. He was a wreck. It looked as though he wouldn’t make his British Rail connection at a mid-point stop and he was red-eyed from crying as he stared out the window into rain-swept countryside, passing with the rhythmic pulse of the rails.

The conductor approached for tickets. The man presented his. The conductor punched it. But then he remained there in the aisle, looking at the man. In his dialect he asked the man if he was alright. The man, telling the story on the radio in his Gaelic accent, spoke to us as if we were sharing a beer, “Why would he give some great care? I was a big lad then, and thought I ought to drag him up the aisle and fling him from the train…. But I didn’t. I looked at him and explained why I was having a bad go.” The conductor listened and said he was indeed sorry to hear of it and hoped he would make his connection. The man turned back to the window and his blackness.

The conductor returned a few minutes later and told the man that the train would wait for him at his connection, “The other passengers will kick up a fuss, but thass not the point is it. The important point is for you to make your connection. You jump over to the other platform quick as ya like, and then your train will leave.”

The man made his connection with both the train and his momma. He finished the story with “as long as I live I won’t hear a bad word said about British Rail.”

In the car my thoughts were with Ben. He told me he liked the sound of the man’s voice, and how his words sounded like a song. I glanced up at him in the rear-view mirror as I always do. The moment touched me; the story, the man’s voice, the rain, and Ben, sitting with his child’s face turned to the window, mouthpiece in, resting his lacrosse helmet against it as the mist hung settled over the road.

I wanted to describe the kindnesses done for us over these past months, just like the conductor’s. I told him about some of them, and I think they settled within his mind; solid stones in the foundation of having and maintaining friends.

Yesterday I had a CT scan again. I am waiting now for the results. A contrast dye must be injected into your veins via IV to show any abnormalities. It's a large bore IV, about as big as a cocktail straw. To put it colorfully, it hurts if it’s done well, and it really hurts if not. The guy who put mine in had a bad day. The IV hurt really badly, making my head swim and my body sweat.

Once you have the IV, you leave the nurses’ area to sit in the waiting room and drink contrast for about an hour. People all around me had IVs and were sitting placidly watching Ellen crawl-dance to a Lady Gaga song. 

I looked at them with contempt. Their IVs must have been the good kind. Meanwhile I was sweating through my shirt and trying to breathe deeply. I was not watching Ellen, or at least not enjoying it. I returned to the nurses’ area to see if someone other than the first guy could help me.

Mandy found me. She had tattooed ankles, those doctor shoes that look like leather clogs, the normal blue scrubs, and a bedside manner that immediately put me at ease. She was from Austin and having a good day—an Austin angel with ankle tats.

She tested the IV and told me it was working beautifully. She wanted to show me how beautiful it was and asked me to look. When I did there was a large syringe hooked to it and my blood swirled placidly in the saline solution used to test and clean IVs. I immediately became faint and requested to no longer be witness to what a beautiful IV it was…. Braveheart I am not.

She had other patients waiting. I was an unexpected extra, but she tended to me. I felt a little wimpy listening to an older guy talk casually about if his IV was in yet or not….I sure as hell knew when mine went in. Mandy laughed at my grimaced joke and talked about South Congress. She wrapped my IV arm in ice, which gave my brain something else to think about. The IV stopped throbbing so painfully, and by that time I was called back to the CT machine so it would be over soon.

Mandy was my British Rail conductor. She didn’t have to stop working on others to help me out. She did a small nice thing for me, and made my day better. Her kindness only took a few moments, and it was her job. But it made me hurt less, and I wanted to note it here.

All around us every day humans take time out to help others. School counselors send encouraging notes to parents. Kids sit with other kids at lonesome lunch tables. Someone gives a compliment on a new dress. Grandparents give special birthday shopping trips to their grandkids. Friends and relatives take time to send videos, emails, letters and texts with encouragement, love and connection.

These moments are what set us apart. These actions make us better than others. These kindnesses keep us in the realm of spiritual creatures with conscience. 

It comes naturally to some of us. Several friends come to mind who give and give and give without ever expecting a return. They walk down life’s aisles looking for young souls in need of a little help.

They may not know it now, but everyday they change the course of a thousand tons of flesh and iron to help bring us all closer to divinity.

A note on the CT scan: it showed positive results. The cancer is taking a bigger beating than I am, and I am making progress toward the ultimate goal of a liver transplant. This is a great result of several months of feeling pretty dodgy, and several more waiting in the future. It helps to justify the journey when we can successfully go through a few gates. The tube remains until we get the new liver. Thank you for the on-going thoughts, notes and prayers. 

Mark Johnson

February 20, 2015 – Debra came with me today to my first therapy treatment, but she was not the only one here.

A few weeks back, Mark Johnson, Jocelyn Johnson’s husband, left this planet to return to our other, less familiar home. As one of my favorite childhood Jesus-movement musicians, Larry Norman said, “We’re only visiting this planet,” and Mark’s tourist visa was up.

During the final weeks of Mark and Jocelyn’s time together here on The Blue Wheel, a ladybug parked himself in their bathroom. It was cold months, and he stayed there for a long time. Jocelyn told me that she and Mark agreed together that once he went on to his next phase, he would send her messages through ladybugs. No moving chairs in the middle of the night. No blown hair without breeze. No mysterious empty cereal bowls in the sink. He would send ladybugs. There will be times when the ladybugs just show up of course. They are naturally occurring after all. But this is the agreement between these two soul mates.

I didn’t know Mark well during his full life. But I did know Mark when he had cancer. We would run into each other at “Cancer Camp” in Houston. He would have made a great Santa Clause later in life because of the way his eyes crinkled and flashed when he laughed – which was frequent. We talked several times in the halls and cafeterias at MDA, and we talked when he was in the room there just after Thanksgiving. Ultimately I spent a few more minutes with Mark talking about fishing. He had on a very cool Simms fishing belt, and after we covered the Snake River and its various trophies, he asked me how I was feeling now that my first chemo and radiation were behind me. We shared common ground. He had it worse than me. But we connected and talked and laughed. I am jealous of those who knew him better. 

At his send-off, his brother and several close friends talked about him with rich content borne from long miles of intimate relationship. From their words, clearly he loved deeply. He cared deeply. He made himself and others laugh. Others were better with him than without him. He was sharp. He loved a jeep under his tush, a breakfast taco in his hand, and wind in his hair. He loved to talk. And he loved to connect with people. He wanted to make sure those left on this globe took care of his family, and helped them to know what kind of person he was.

He was a special person. He is a person I would have loved to have known better. I think he could have saved me a few times, and my life would have been richer to have invested time around a grill and a dinner table with him and his lovely Jocelyn.

At his eulogy I will never, ever forget the video of him dancing in his bed just a few days prior. Watching him emphasized how much we as a species love music; how important it is for us. But as I sat there in the hard seat of the stone house of God watching Mark wave his hand, dip and swing his head, and sing with the soul of the music coursing through the room where he would leave this earth a few days hence, my heart felt him wanting to leave. It felt like he was already very close to “gone up yonder.” He was moving and rejoicing in his damaged body. He was carefree in those moments, completely unabashed in his musical rapture.

And at Mark’s request during his send-off service he shared the song “Goin’ Up Yonder”. It was a cappella with two African American singers, both towering in the balcony and of impressive height to begin with. The man set the tone with only his voice, a rhythmic basso in eight count. The woman joined and the song soared above us like a sunrise. If Mark had not already joined the heavens, at that point he entered the city and the place erupted.

I listened to all the available versions on the web in an effort to share this song. Nothing compared to Mark’s send off. Then I found this version which approaches it… The audience is an evangelical white church filled with somewhat distracting church goers. Their clothing and hair is 1980s. But try to ignore them. Focus instead on the singer, Lamie. She is entrancing, much like the woman who sang for Mark. 

The bottom line from Mark’s dancing, which was inspiring and inspired, and from Mark’s tribute song is that they were transcendent moments for me in a life-changing series of minutes.

On this planet, constrained in our bodies, we move them and make noise when music inspires us. In what way will we rejoice when we are no longer captive to the inconceivable but limited workings of our earthly bodies? Will we create giant white scars of comet light across the dark face of the universe? Will our souls turn to churning stars, erupting with cataclysmic joy and bending light millions of years into the past and future? We will be so powerful we capture and hold energy’s spectrum within us, creating darkness so absolute it is literally filled with light? What will we do? How will we rejoice?

Mark knows.

On Friday, February 20, when I arrived at my first session of therapy, I chose a non-descript tan seat two in from the end. For reasons that are unclear to me, I moved to the identical tan seat one over, closer to the nurses’ station.

I sat. Deb sat. Our nurse, Pat, came and sat. She was confident and reassuring. We talked through the drugs to be infused in my physical shell. We talked about my “power port”, a plastic bulb just under my skin that can take 300 pounds per square inch of liquid pressure and has a long catheter snaking its way into my superior vena cava just above my heart. Pat began administering the drugs to coat my brain’s nausea centers for 72 and 120 hours. And then it was only Deb and me sitting together, absorbing and coping.

I looked down at the linoleum beneath my boots, hanging loose beneath my jeans. In the sterile, intentionally isolated world of the second floor of the Texas Oncology Center, Mark Johnson had left me a ladybug. Thank you Mark. Debra and I deeply appreciate your message. This blog post will hopefully help your family know what kind of man you are, and what kind of ethereal messenger you are. Thank you for taking time out of your busy dancing schedule to drop me a line.

My boot. Mr. Johnson's koan is directly below the heel in the image, on the green tile. 

This guy didn't get here by accident. And I didn't find him by accident.

Going up Yonder video - https://www.youtube.com/watch?v=vKQGqoLWGI4

Going up Yonder lyrics

If you want to know

Where I'm going?

Where I'm going, soon

If anybody ask you

Where I'm going

Where I'm going soon

I'm goin' up yonder

I'm goin' up yonder

I'm goin' up yonder

To be with my Lord

I can take the pain

The heartaches they bring

The comfort in knowing

I'll soon be gone

As God gives me grace

I'll run this race

Until I see my Savior

Face to face

I'm goin' up yonder

I'm goin' up yonder

I'm goin' up yonder

To be with my Lord

I'm goin' up yonder

I'm goin' up yonder

I'm goin' up yonder

To be with my Lord