When I was little, Ben’s age or about 7, my family went on a trip to Beavers Bend National Park in Oklahoma. It is a pine forest surrounding a lake in South East Oklahoma with rustic log cabins, screened porches, fire pits and hiking trails. Sadly, I don’t recall any beavers.
I do recall that my brother Will and I had some 12-inch plastic action figures called “Johnny West” men we brought along. There was Johnny West, a fictional cowboy with snap button shirt and boots, and there were General Custer, Wyatt Earp, Geronimo and several other famous characters fashioned after the still-intriguing Wild Wild West of my childhood.
We set up those Johnny West men in our cabin’s fire circle in various states of action with their plastic guns and hats, and then we positioned ourselves about 20 feet away with new “wrist rocket” sling shots my dad had purchased for the trip. We shot rocks at them for hours. Since I was little and not able to aim the sling shots very well, my great contribution was mimicking fall after fall of the Johnny West men when they would take a direct hit.
After the battle, I inspected my newest Johnny West man, a Mohican named Fighting Eagle. He was shirtless, and when the dust settled his warlike chest had several deep gashes and cuts. I was pretty upset that my new guy was messed up, but my mom put red finger nail polish on his wounds and then he looked very, very cool. It’s a memory with conflicting emotions of both dismay and pride, and I recall them both very distantly, like looking up at the dive boat floating on the surface of a sixty foot plunge.
The other memory from that trip is that it’s the first time I remember that my stomach would very often get upset after we drove for a distance of any significance. When we arrived at the cabin, I can remember lying on a naugahyde couch on the screened porch listening to my dad and brothers playing that Johnny West game while my stomach hurt too badly to get up. As near as I can figure, now that I have 20/20 hindsight, after sitting for such long periods in a moving vehicle my abdomen would flare up because even as a little kid I had a fairly large choledochal cyst on my gall bladder. The position and movement must have aggravated it and caused me discomfort.
This all came to a head when we moved from Durant, Oklahoma to Springfield, Missouri. The drive was 12 hours in the front seat of a U-Haul moving truck that I had helped pack. It was late summer, and my stomach began to hurt after the drive, so after we arrived in our new home I had to lie down on one of the quickly-assembled twin beds in my new room. I can vividly recall lying on the bed looking at the blanched summer ceiling while push lawnmower noise ebbed and flowed as my dad would make passes by my windows, slowly mowing the lawn, the concentric rectangles of unmown and mown grass growing conversely smaller and larger. I was lying there awake when my stomach really began to ache, and I began to yell out for “Mom!”, as little kids do when they’re sick.
My brother Pres is the one who came into my room since Mom was outside. And it was Pres who found the softball-sized lump in my chest where the cyst on my gall bladder had finally grown to the point that it slid out from under the camouflaging side lobe of my liver.
I remember lying there thinking that if we didn’t have a doctor to fix me up, Dad would have to shoot me with a Johnny West style revolver to put me out of my misery. What a strange memory, but it’s there frozen in crystal as I laid next to the bedroom door on the bed, under the brightly colored Mexican blankets we had gotten from our friends in Brownsville in South Texas.
It was, of course, a Saturday so the only medical option was the exorbitantly priced emergency room. Somehow as kids we always ended up getting hurt on the weekend when the only option was the ER. More than once my parents bemoaned this fact…. Anyway, we went to St. John’s Hospital’s ER in Springfield, Missouri and thus began a long ordeal of multiple surgeries that would last the entire fall of my second grade year.
To sum up the procedures I underwent, the doctors removed the choledochal cyst and my gall bladder, and while they were in there poking around, they found that my kidneys and their system of tubes and reservoirs and ducts were also severely damaged. So, over the course of the next three months, they laid me open four separate times.
I think my parents figured out that I spent almost 16 weeks in the hospital during that time. Oddly I don’t remember it as too bad. My parents would buy me a new present for each week that I was in the hospital. I specifically remember some very cool 6-inch army men that had posable arms and legs, their upper and lower torso swiveled, and they had helmets I could remove. They brought a package that had four of those guys with machine gun installments and I had them set up in my hospital room for weeks.
There were also various lovely people who entered my life and my family’s life at that time. The one that stands out the most to me, really as the embodiment of all those people, was Patsy Ferguson. She was a brunette, very attractive, and dressed nicely every time I saw her. She was a classy seventies lady about Springfield. She picked me out as her cause and brought me twenty or thirty little metal cars that I still have today. And when the holidays rolled around and I was still in the hospital, she brought a four-foot white plastic Snoopy Christmas tree encircled with white lights and with little Snoopies hanging all over it with scriptures on the bottom of their red skis. That tree lived in my kids’ rooms on Christmas up until this past year when it finally gave in to life’s natural deterioration. We saved several of my favorite Snoopies for ornaments. Patsy was a huge ministry to me, and I and my family have benefitted from it for decades, and will continue to for more years to come.
I also remember that my immediate family gathered to me and that together we made some life-long memories. The one that stands out in my mind is me in an adult-sized wheel chair, my brother Will pushing me and doing wheelies, and with my family in tow, one night we all adventured through the empty holiday halls of St. John’s hospital to a huge, formal room with thirty-foot, floor-to-ceiling windows and dark walnut walls. The walls held larger than life portraits of the hospital founders. The furniture was post modern black leather with chrome legs and railings, and there was an enormous lighted Christmas tree there, reflected in the their shining outlines and the windows against the night outside.
I recall coming home that year for Christmas, and as luck would have it, someone gave me some mustard color pajamas. I was already sickly looking and skinny, but after adding in that horrible pair of PJs, I don’t think we got one snapshot where I didn’t look like the walking dead. Happy Holidays!!
So what’s my point in relating these tales? Deb and I saw the movie Wild last night. (For those of you groaning now, yes, it was a bad decision to see a movie about someone’s mom dying of cancer. But I have to say it was an even worse decision to make the movie in the first place. (I give it two stars out of ten. Sorry to any Reese Witherspoon fans out there.…) None the less, we saw the movie and at one point the mom, who is dying (and I am not), looks at her daughter who is unconvincingly played by Witherspoon, and says, “This was never meant to be me. We had so many good things that were just beginning.”
It was a moving point in the movie, but for me, far away in another place in my mind, it spurred my thoughts to wondering if my version of “this” was meant to be for my version of “me”: was I really supposed to be the one with cancer? Why isn’t it some loser / loner like the freaking Unabomber? And if it is supposed to be me, then why? It’s a common thought for anyone who is face to face with mortality whether it’s theirs or someone else’s in the room. And believe me when I tell you that there is no satisfactory answer.
But in my case, let’s face it, when it comes to serious health issues, more than once I have been the unlucky recipient of fate’s stink eye. In every other sense she has smiled on my life more than anyone should hope for. I have all that I could or should want⎯and I feel blessed to have it. I believe I have been given the opportunity to appreciate the beauty of what I have more by shouldering the weight of this latest round of drudgery. I can bear the weight because I am used to it. I am well trained by my mistress fate. I know how to do it. And I can help my family as they learn. The only answer to my question above is to accept the twist of fate, put in your mouth guard and do some mental ass kicking.
How else to bear up under this burden? I know it’s not fair to just boil it down to “ass kicking.” For starters, you can no more kick fate’s ass than bottle lightning, as they say. And aside from that, someday in the future, someone may want to know what I did while I have been here. So, there are three major aspects to my strategy.
The first one I have mentioned and written about dozens of times. I have used it my entire lifetime, but this time in particular it has become very tangible. In essence, when adversity comes, I acknowledge it but I use it to enhance my life. My life and all it contains so beautifully and simply will pass whether I am on board and paying attention or not. So I push hardship, tiredness, and all the rest of that pile to the back of the bus while I remain as active a participant in my crazy life as I can. As a result of this strategy, it’s easier to get out of bed. It’s more fun to have Nerf wars in the hallways with the boys. It’s a deep pleasure to create art and listen to music with Cate. It is more fulfilling to have movie dates with my wife, even if we see Wild. In short, life is just better knowing that by engaging it, you are kicking hardship squarely in the tender bits.
The second part is very mundane. I do what the doctors tell me to do. Blah blah blah. It’s boring, but at the end of the day, they are trying to make me better and hopefully, no matter how they deliver the requirements, what they ask me to do is going to heal me. So I do it and get it done, whether that is taking pills that make me sick, shooting a needle full of stuff into my belly every morning, wrapping my tube gingerly with gauze or walking around the block multiple times a day.
The final part of my strategy is far more abstract but just as important to me. I have faith that I am supposed to be here. I have faith that somehow, by my being here, life will work goodness on me and my family and those who surround us. I have faith in God and his will.
By its very definition “faith in God” dictates that our Gods remain bigger than our minds can conceive. They remain beyond us, in every sense. We have moments where we glimpse their reality when we pay attention, but in general, they remain shrouded in poems and abstract verses, or hidden in plain site with verses that tell us exactly what they want for us⎯if we can only believe. But at the core of our beliefs, God’s intellect is broader, and his words are many-layered, leaving us to determine for ourselves to make a leap of faith. His power is too huge to put in a container. His breadth is beyond staggering. And His love is without limits or definition. He has done his part and we must do ours, however large it seems to us.
For me personally, this means I have chosen to believe in Jesus’s life, death, and divine purpose for coming to this planet. I have also chosen to believe in a God of intelligent design. Given these two leaps of faith, I feel as confident as I can in saying that God has not thrown me a “curve ball.” He doesn’t do that. That implies some level of indifferent capriciousness. Damn that notion. God is not that guy. I chose not to believe that. I chose to believe that he knows what my family can withstand and benefit from. I am here, with this disease, for many reasons. Some of them have become clear to me. Some of them will only be seen years from now with perfect hindsight. I am looking forward to those days….
I empathize with the mom from Wild who says, “This was never meant to be me.” But I disagree. My world is already better in some ways because of it. My family is growing closer because of it. My relationships are deeper because of it. Sure there are some hard spots, but I think it was always meant to be me.
I do recall that my brother Will and I had some 12-inch plastic action figures called “Johnny West” men we brought along. There was Johnny West, a fictional cowboy with snap button shirt and boots, and there were General Custer, Wyatt Earp, Geronimo and several other famous characters fashioned after the still-intriguing Wild Wild West of my childhood.
We set up those Johnny West men in our cabin’s fire circle in various states of action with their plastic guns and hats, and then we positioned ourselves about 20 feet away with new “wrist rocket” sling shots my dad had purchased for the trip. We shot rocks at them for hours. Since I was little and not able to aim the sling shots very well, my great contribution was mimicking fall after fall of the Johnny West men when they would take a direct hit.
After the battle, I inspected my newest Johnny West man, a Mohican named Fighting Eagle. He was shirtless, and when the dust settled his warlike chest had several deep gashes and cuts. I was pretty upset that my new guy was messed up, but my mom put red finger nail polish on his wounds and then he looked very, very cool. It’s a memory with conflicting emotions of both dismay and pride, and I recall them both very distantly, like looking up at the dive boat floating on the surface of a sixty foot plunge.
The other memory from that trip is that it’s the first time I remember that my stomach would very often get upset after we drove for a distance of any significance. When we arrived at the cabin, I can remember lying on a naugahyde couch on the screened porch listening to my dad and brothers playing that Johnny West game while my stomach hurt too badly to get up. As near as I can figure, now that I have 20/20 hindsight, after sitting for such long periods in a moving vehicle my abdomen would flare up because even as a little kid I had a fairly large choledochal cyst on my gall bladder. The position and movement must have aggravated it and caused me discomfort.
This all came to a head when we moved from Durant, Oklahoma to Springfield, Missouri. The drive was 12 hours in the front seat of a U-Haul moving truck that I had helped pack. It was late summer, and my stomach began to hurt after the drive, so after we arrived in our new home I had to lie down on one of the quickly-assembled twin beds in my new room. I can vividly recall lying on the bed looking at the blanched summer ceiling while push lawnmower noise ebbed and flowed as my dad would make passes by my windows, slowly mowing the lawn, the concentric rectangles of unmown and mown grass growing conversely smaller and larger. I was lying there awake when my stomach really began to ache, and I began to yell out for “Mom!”, as little kids do when they’re sick.
My brother Pres is the one who came into my room since Mom was outside. And it was Pres who found the softball-sized lump in my chest where the cyst on my gall bladder had finally grown to the point that it slid out from under the camouflaging side lobe of my liver.
I remember lying there thinking that if we didn’t have a doctor to fix me up, Dad would have to shoot me with a Johnny West style revolver to put me out of my misery. What a strange memory, but it’s there frozen in crystal as I laid next to the bedroom door on the bed, under the brightly colored Mexican blankets we had gotten from our friends in Brownsville in South Texas.
It was, of course, a Saturday so the only medical option was the exorbitantly priced emergency room. Somehow as kids we always ended up getting hurt on the weekend when the only option was the ER. More than once my parents bemoaned this fact…. Anyway, we went to St. John’s Hospital’s ER in Springfield, Missouri and thus began a long ordeal of multiple surgeries that would last the entire fall of my second grade year.
To sum up the procedures I underwent, the doctors removed the choledochal cyst and my gall bladder, and while they were in there poking around, they found that my kidneys and their system of tubes and reservoirs and ducts were also severely damaged. So, over the course of the next three months, they laid me open four separate times.
I think my parents figured out that I spent almost 16 weeks in the hospital during that time. Oddly I don’t remember it as too bad. My parents would buy me a new present for each week that I was in the hospital. I specifically remember some very cool 6-inch army men that had posable arms and legs, their upper and lower torso swiveled, and they had helmets I could remove. They brought a package that had four of those guys with machine gun installments and I had them set up in my hospital room for weeks.
There were also various lovely people who entered my life and my family’s life at that time. The one that stands out the most to me, really as the embodiment of all those people, was Patsy Ferguson. She was a brunette, very attractive, and dressed nicely every time I saw her. She was a classy seventies lady about Springfield. She picked me out as her cause and brought me twenty or thirty little metal cars that I still have today. And when the holidays rolled around and I was still in the hospital, she brought a four-foot white plastic Snoopy Christmas tree encircled with white lights and with little Snoopies hanging all over it with scriptures on the bottom of their red skis. That tree lived in my kids’ rooms on Christmas up until this past year when it finally gave in to life’s natural deterioration. We saved several of my favorite Snoopies for ornaments. Patsy was a huge ministry to me, and I and my family have benefitted from it for decades, and will continue to for more years to come.
I also remember that my immediate family gathered to me and that together we made some life-long memories. The one that stands out in my mind is me in an adult-sized wheel chair, my brother Will pushing me and doing wheelies, and with my family in tow, one night we all adventured through the empty holiday halls of St. John’s hospital to a huge, formal room with thirty-foot, floor-to-ceiling windows and dark walnut walls. The walls held larger than life portraits of the hospital founders. The furniture was post modern black leather with chrome legs and railings, and there was an enormous lighted Christmas tree there, reflected in the their shining outlines and the windows against the night outside.
I recall coming home that year for Christmas, and as luck would have it, someone gave me some mustard color pajamas. I was already sickly looking and skinny, but after adding in that horrible pair of PJs, I don’t think we got one snapshot where I didn’t look like the walking dead. Happy Holidays!!
So what’s my point in relating these tales? Deb and I saw the movie Wild last night. (For those of you groaning now, yes, it was a bad decision to see a movie about someone’s mom dying of cancer. But I have to say it was an even worse decision to make the movie in the first place. (I give it two stars out of ten. Sorry to any Reese Witherspoon fans out there.…) None the less, we saw the movie and at one point the mom, who is dying (and I am not), looks at her daughter who is unconvincingly played by Witherspoon, and says, “This was never meant to be me. We had so many good things that were just beginning.”
It was a moving point in the movie, but for me, far away in another place in my mind, it spurred my thoughts to wondering if my version of “this” was meant to be for my version of “me”: was I really supposed to be the one with cancer? Why isn’t it some loser / loner like the freaking Unabomber? And if it is supposed to be me, then why? It’s a common thought for anyone who is face to face with mortality whether it’s theirs or someone else’s in the room. And believe me when I tell you that there is no satisfactory answer.
But in my case, let’s face it, when it comes to serious health issues, more than once I have been the unlucky recipient of fate’s stink eye. In every other sense she has smiled on my life more than anyone should hope for. I have all that I could or should want⎯and I feel blessed to have it. I believe I have been given the opportunity to appreciate the beauty of what I have more by shouldering the weight of this latest round of drudgery. I can bear the weight because I am used to it. I am well trained by my mistress fate. I know how to do it. And I can help my family as they learn. The only answer to my question above is to accept the twist of fate, put in your mouth guard and do some mental ass kicking.
How else to bear up under this burden? I know it’s not fair to just boil it down to “ass kicking.” For starters, you can no more kick fate’s ass than bottle lightning, as they say. And aside from that, someday in the future, someone may want to know what I did while I have been here. So, there are three major aspects to my strategy.
The first one I have mentioned and written about dozens of times. I have used it my entire lifetime, but this time in particular it has become very tangible. In essence, when adversity comes, I acknowledge it but I use it to enhance my life. My life and all it contains so beautifully and simply will pass whether I am on board and paying attention or not. So I push hardship, tiredness, and all the rest of that pile to the back of the bus while I remain as active a participant in my crazy life as I can. As a result of this strategy, it’s easier to get out of bed. It’s more fun to have Nerf wars in the hallways with the boys. It’s a deep pleasure to create art and listen to music with Cate. It is more fulfilling to have movie dates with my wife, even if we see Wild. In short, life is just better knowing that by engaging it, you are kicking hardship squarely in the tender bits.
The second part is very mundane. I do what the doctors tell me to do. Blah blah blah. It’s boring, but at the end of the day, they are trying to make me better and hopefully, no matter how they deliver the requirements, what they ask me to do is going to heal me. So I do it and get it done, whether that is taking pills that make me sick, shooting a needle full of stuff into my belly every morning, wrapping my tube gingerly with gauze or walking around the block multiple times a day.
The final part of my strategy is far more abstract but just as important to me. I have faith that I am supposed to be here. I have faith that somehow, by my being here, life will work goodness on me and my family and those who surround us. I have faith in God and his will.
By its very definition “faith in God” dictates that our Gods remain bigger than our minds can conceive. They remain beyond us, in every sense. We have moments where we glimpse their reality when we pay attention, but in general, they remain shrouded in poems and abstract verses, or hidden in plain site with verses that tell us exactly what they want for us⎯if we can only believe. But at the core of our beliefs, God’s intellect is broader, and his words are many-layered, leaving us to determine for ourselves to make a leap of faith. His power is too huge to put in a container. His breadth is beyond staggering. And His love is without limits or definition. He has done his part and we must do ours, however large it seems to us.
For me personally, this means I have chosen to believe in Jesus’s life, death, and divine purpose for coming to this planet. I have also chosen to believe in a God of intelligent design. Given these two leaps of faith, I feel as confident as I can in saying that God has not thrown me a “curve ball.” He doesn’t do that. That implies some level of indifferent capriciousness. Damn that notion. God is not that guy. I chose not to believe that. I chose to believe that he knows what my family can withstand and benefit from. I am here, with this disease, for many reasons. Some of them have become clear to me. Some of them will only be seen years from now with perfect hindsight. I am looking forward to those days….
I empathize with the mom from Wild who says, “This was never meant to be me.” But I disagree. My world is already better in some ways because of it. My family is growing closer because of it. My relationships are deeper because of it. Sure there are some hard spots, but I think it was always meant to be me.
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