nolongeriwholive

[nolongeriwholive]

Three years on (and on)

One week ago, the day before Easter, I spoke before our monthly men’s breakfast and told them that there is a difference between facts and truth. “The facts were,” I said, “that Jesus was dead. They took his body down off the cross, wrapped it, and put it in a tomb, rolled the stone across the entrance – and left him for dead. That's all they knew. The Truth was something much greater and even unimaginable.”

Then I said, “Two years and 51 weeks ago, the doctors at the Mayo Clinic told me that the facts were that I had ALS and I had 3 years to live, and the last year was not going to be a very pleasant one. They said the facts were that my body was going to deteriorate, I was going to be in a wheelchair, and need an oxygen tube and feeding tube until I ultimately wasted away.”

I stepped out from behind the lectern - on my own two feet (no cane, no braces)  - so the men could see me in full, and far from being wasted away. I smiled, inviting them to laugh, and they did, softly at first and then louder as I looked down and regarded myself as well. 

“The Truth,” I said, “is something more. God healed me of ALS,” and then they were clapping, cheering and stomping their feet. 

Three years ago today, April 22, 2014, my wife and I received that diagnoses, and the apparent death sentence. To say that the rest of that week was the most surreal in my life would not be an exaggeration. Faith and family, as you know, were the key pillars then and going forward, as you can see if you back through this blog. To some extent, a blunt diagnoses such as that can be extremely clarifying. “If the doctors say there is nothing man can do,” I reasoned to myself, “then that only leaves God.” Galatians 2:20 came to me: “I have been crucified with Christ; it is no longer I who live, but Christ lives in me; and the life which I now live in the flesh I live by faith in the Son of God, who loved me and gave Himself for me.” If I was as good as dead, then it truly was “no longer I who lived” and that became both my focus and the name of this blog that I started a few days after the diagnosis. 

If you’ve been following along here, you’ll know that 13 months after I was diagnosed I was undiagnosed, also at the Mayo. I still had some symptoms, but I was too healthy. Since then I’ve continued the story here sporadically. There were additional miracles to report (as you can scroll down to read), but also a life to live. My youngest daughter moved to Prague in late 2015 and we flew over there for 9 weeks as she transitioned, and we returned there last fall with our oldest daughter and newest grandchild. These and many other things were blessings we could barely have foreseen while sitting in that doctor’s office 3 years ago. 

There has been great joy in our lives since that sentence was lifted, but I have also known some pain and some sadness. The sadness stems from the fact that ALS still has a spectral hold on me. Several people that I came to know during my time with the disease have since succumbed, and new people have been added. A friend and former co-worker has been diagnosed and is fading rapidly. Another man I had met and known when he was the radio voice of the Minnesota Vikings in the 90s died of ALS last month, and I was greatly moved (and saddened) to read recently of the University of Minnesota scheduling a special one-person graduation ceremony in March so a PALS father could watch his son graduate because he was not likely to live long enough for the May ceremony.  

These things touch me on a deep and personal level that is hard to explain. It frustrates me to know that others suffer, and more than once in the last year I have asked the question that I never asked  in that first year: “Why me?” I take no pride and put no stock in my own piety as having anything to do with it. There are likely people with more faith than me, and as many (and more) good reasons to live as I have, who have died, or are dying of this brutal disease.It is hard not to dwell on this at times, but I resist trying to “figure it out”. Man trying to “figure out” the ways of God is responsible for a lot of bad doctrine and pop theology out there because we insist that God’s ways make sense to us. I came to the realization that my healing was really not much different from my salvation. In both instances i had done nothing to deserve such boons, yet God had moved on my behalf, even before I knew what I needed or could ask for it. I can only trust and assume that there is a reason for it, and that reason (or reasons) will be evident in time. And, perhaps, it already is. 

I mentioned the pain I’ve experienced. I wasn’t referring to emotional pain or spiritual unrest, but severe, even crippling pain like I had never known in my experience of knee surgeries, abdominal surgery and back surgery. Late last year I ended up with a case of severe carpal tunnel in both my right and left hands and wrists. Nobody has ever died of this, but I never felt so much like I wanted to. I couldn’t move my hands or arms without pain, and I couldn’t sleep for more than 20 minutes or so before I had to move my hands again, causing me to wake up. I prayed, I struggled, I ultimately ended up getting a cortisone short in my left wrist and surgery on my right one; the recovery, too, was more painful and longer-lasting than anything I’d previously experienced. I even dipped into the prescription opiods that I’d been able to do without after previous surgeries. I was pretty miserable, and even asked God a couple of times why this was such a challenge after what I’d already received and experienced. No answer was forthcoming, until I went back to the Mayo for a post-op follow-up with my orthopedic surgeon. 

The Mayo Clinic is a huge campus; the main exam buildings are 15 stories, and when my wife and I came out of my appointment in the orthopedic section we saw a couple from Iowa in the waiting room that we had met at my son-in-law’s first church out of seminary. They had been real sweethearts to Faith and Ben and the kids, which is how we got to know them. They also knew my testimony, and as we talked to them that day in the waiting room they described the tests the wife had been undergoing for numbness in her feet. The tests and symptoms sounded all-to-familiar to us. My wife said we should pray for them, and they were all in favor of it. Without any self-consciousness, we held hands right there and I prayed. I don’t remember what words I used, but I know I asked God to bring them peace and to do what He had done in my life. As we were praying my wife noticed that a woman sitting in the row in front of us was leaning back toward us to listen, and was crying. When we finished my wife asked that woman if she would like prayer for anything as well. 

“Oh, yes,” she said, still in tears. “I was diagnosed this morning with ALS.”

“God healed my husband of ALS,” my wife said. Along with our friends from Iowa, we poured out even more for her right then and there. There was peace in her face when we finished and as we talked more about what she was going through and what I had experienced. Her mother was with her; they had driven up from Arkansas to see the doctors at the Mayo - and just so happened to be sitting in that row, in that waiting room, at that time. We exchanged phone numbers and later that evening she called me to talk some more. She told me that she had just been saved a few weeks prior to coming to the Mayo. I told her that when I was diagnosed I didn’t know  just what God was going to do, but I believed He would do something. “I don’t know exactly what God will do for you, or how,” I said, “but the fact that He could so orchestrate things so that we could meet today, right when you needed to hear this, gives me a lot of hope and confidence.” Since then we have been checking in with each other every 4 to 6 weeks. (Oh, and the first person we prayed for that day ended up getting very good news from her tests: no ALS, just a  neuropathy in her foot that could be treated with therapy.)

I addressed this in similar fashion with the men at the breakfast last week; mist of whom are going through life-altering trials and challenges of their own. “I don’t know why I am still here today, but I’m pretty sure that speaking to you is a big part of it.”

- April 22, 2017

One of my favorite songs is “The Sea” by the 80s group, The Waterboys.. I listened to this song often in the year after I was diagnosed, and in the time since then. Land-locked all of my life, I have always been mesmerized by the sea whenever I had a chance to look upon it. Similarly, this song always helped calm my mind whenever I tried to get too much into “figure it out” mode during this adventure, and brought me peace. The music critics often describe the song-writer, Mike Scott as a “mystic”, but the meaning of these verses has always been clear to me. This life is the river, and it leads to the sea. All the things I know, or think I know, as I navigate this river pale when I have glimpsed the sea and what awaits. 

I am not afraid of the shore. 

[nolongeriwholive]

I was initially diagnosed with ALS just a few months after my third grandchild and namesake was born. Thoughts of one’s future can go kind of dark after this kind of news, and one of the hardest things was to think of how little time I’d possibly have to know these three children, all under the age of four. At the time it was hard to conceive of the joy we would ultimately experience or to picture life going on. It does go on, of course, and I’m glad that I get to be part of that after all. I am especially pleased with the proof of that, now in the person of our newly arrived fourth grandchild.

I am pleased to introduce to you Adelaide Constance Rit Worley, or ‘Laidey (or Laidey-bug) as we call her. The word “rit” means “laughs” in French, so we also know her as our “Laidey of Constant Laughter.”

God is good.

[nolongeriwholive]

A faith for radio

When I was in college I was part of a radio comedy group that put on a half-hour show once a week for a semester. We called the program “The Ugly Medium” because if we were good looking we’d have been on television. I still have a face for radio, and recently I had the opportunity to return to the airwaves when my friend Brad Carlson invited me to his show when he subbed for regular host Paul Ridgeway on KKMS in the Twin Cities last week (Oct. 25).

Brad wanted to talk about my experience of being diagnosed - and then undiagnosed - with ALS plus some of the other miracles I’ve experienced in my life. We talked for an hour (with commercial breaks) and I was surprised at how quickly the time went by. I had some notes with me, but we probably touched on maybe 20% of the things I thought I might be called on to say. It was a fun experience, and I hope listeners found some encouragement. I don’t know that anything I said would be a surprise to readers of this blog, but if you’d like to hear the show you can listen to the podcast at the link below.

https://soundcloud.com/on-the-way-with-ridgeway/10-26-15-otw-hr2

- 10/03/15

[nolongeriwholive]

Vorpal blades and manxome foes, Part 3 – of Tumtums and other trees

One of the highlights for me throughout the period of my ALS diagnosis was the peace I had right from the start, despite the ominous news. As I’ve written before, I realized that my past experiences with God, through Christ, had prepared me to be able to deal with this new challenge. Perhaps the most important experience was my bout with cancer in 2011. I was not peaceful going into that, but it came to me during that time. It helped me then, and was crucial now. How did that peace come to me? This blog-post from back then explains it. From a four-part series I wrote, tied to Lewis Carroll’s “Jabberwocky”:

He took his vorpal sword in hand,

long-time the manxome foe he sought - 

So rested he by the Tumtum tree,

And stood awhile in thought

Most people who know me would likely say that I’m a pretty positive guy, strong in my faith. I’ve experienced many miracles in my life, including healing,  and I’ve learned to wield the “sword of the Spirit, which is the word of God” (Eph. 6:17). I’ve been blessed to have been used to pray and heal others, including a couple of dramatic cases, one of which was a true matter of life and death.  In fact, thinking back on it now, I can say that there are two people alive today because God used me to pray; once to open a barren womb and once to stop the effects of a massive stroke. Those are stories for another time, because I also have to say that despite these experiences, I found myself feeling low and more than a little alone after the Jabberwock announced, “Game on.” 

The lowest point actually came between the time I had the biopsy done and when I got the results. It was a Friday night and I made the mistake of entertaining the jubjubs and bandersnatches late at night before going to bed. One of the factoids I came across was that if left untreated, prostate cancer metastasizes easily into the lymph nodes and into the bones, especially in the lower back and hips, and once into the bones is often fatal. My father ultimately died of lymphoma, detected via a bone biopsy,  and the very reason I had gone in for a physical in the first place was because I’d had chronic pain in my lower back and hips for a year that just never seemed to go completely away.

When I read that, well past my bedtime, I suddenly pictured cancer having got into my bones and lymphatic system because I had ignored the pain for so long. It was a fitful night, to say the least and I was not a jolly and well-rested fellow on Saturday morning. As I prayed scriptures of peace and healing that morning something strange happened. It was as if I dozed off for a few minutes where I was seated, which wouldn’t have been unusual given the lack of sleep and my stress level. The thing is, when I “came to” I was at once at peace. I had the definite sense that I had been somewhere else for a few minutes, but I had no recollection of where or what had been said, only that my attitude was completely changed. And as I went about my morning I started to think of reasons — some pretty obvious unless you’re trying to think clearly after midnight — why the pain in my legs and hips couldn’t have been bone related. As the day went on, my outlook continued to brighten, perhaps because I was such a clever fellow.

Then Sunday morning came around and during the praise and worship part of our service I suddenly had a picture in my mind of two trees in the Garden of Eden. One was the tree of life and the other was the tree of the knowledge of good and evil. At that moment I realized that I had been spending all my time swinging from the branches of the wrong tree. I had turned to the knowledge that I had from my work in healthcare, to what I had found on-line and from other resources, and been bounced around pretty good. Not that it was all evil — it is the tree of the knowledge of good and evil after all — but there isn’t any peace in that knowledge, even when I had thought I’d “figured out” the fear that had disquieted me the day before.

I also realized that I while I had had knowledge of the Tree of Life, I had not been drawing on my understanding. That is, while I had been embracing God’s word, I had not been dwelling on His character and on the things He has done in my life.  I had talked earlier in the morning with my pastor about what I had gone through and what I thought I had realized. He was standing near me after I had this revelation so I walked over to him while the music was still playing and with a smile said, “You know, there were two trees in the garden.” He must have understood what I meant because when we moved into a different part of the service he asked me to come up front and handed me a New Living Translation and asked me to read Psalm 139, verses 1 through 18 to the congregation.

O LORD, you have examined my heart and know everything about me. You know when I sit down or stand up. You know my thoughts even when I’m far away. You see me when I travel and when I rest at home. You know everything I do. You know what I am going to say even before I say it, LORD. You go before me and follow me. You place your hand of blessing on my head. Such knowledge is too wonderful for me, too great for me to understand! I can never escape from your Spirit! I can never get away from your presence! If I go up to heaven, you are there; if I go down to the grave, you are there. If I ride the wings of the morning, if I dwell by the farthest oceans, even there your hand will guide me, and your strength will support me. I could ask the darkness to hide me and the light around me to become night—but even in darkness I cannot hide from you. To you the night shines as bright as day. Darkness and light are the same to you. You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. Precious are your thoughts about me, O God. They cannot be numbered! I can’t even count them; they outnumber the grains of sand! And when I wake up, you are still with me!

“That is the Tree of Life, John,” he said when I finished and returned to my seat. From that morning on I no longer had any fear about what was going to happen, even when I received word the following week that the biopsy was positive. I pursued the options that were before me with peace, supported by my wife who said she would agree on any course of action I chose that brought me peace. I smiled when I came across John 16:15, remembering the Tree of Life: “You did not choose Me, but I chose you and appointed you that you should go and bear fruit, and that your fruit should remain, that whatever you ask the Father in My name He may give you.”

Here are links to the rest of the series:

Vorpal blades and manxome foes, Part 1 – ‘Twas brillig

Vorpal blades and manxome foes, Part 2 – Jubjubs and frumious bandersnatches

Vorpal blades and manxome foes, Part 4 – Snicker-snack

- October 30, 2015

[nolongeriwholive]

Searching for a handle on the moment: another miracle

There’s a scene in the first Men in Black movie where the uninitiated Will Smith has just watched Agent K (Tommy Lee Jones) shoot the head off an alien - and the alien’s head grew back. Smith goes outside right after that and stares off into the distance. K comes up to him and in his Joe Friday voice says,

“Searching for a handle on the moment?”

That’s a bit like how I felt back in May when my neurologist said that, after 13 months, he no longer thought that I had ALS. Then, of course, my wife and I were very, very happy. As you may recall, though, despite this deliverance I still had nerve damage in my feet, a condition called “foot drop” where I couldn’t raise my toes at all, and it was difficult to raise my feet. Without my AFO braces (robot feet) I could easily trip when walking around because my toes could catch on a piece of carpet or any obstruction.

There were a few who asked me why, if God had healed me of ALS, did He not heal my feet and ankles, too. My response was, “I don’t know - I stopped telling Him how to do things when I put it all in His hands shortly after being diagnosed.”

Neither God, or the Mayo, were through with me, however. My neurologist suggested that I have spinal surgery to relieve the severe stenosis in my lower back. He thought that may help my feet. I had consultations with two other spine surgeons who considered my condition, my x-rays and MRIs, and the limits of their ability and technology. They concurred that the surgery could help, or at least keep things from getting worse. At best, I could hope to regain some function, but given the amount of nerve damage I likely wouldn’t regain all of it. Oh, and it may take as long as two years to know if the surgery was successful or not as the nerves regenerated (or didn’t).

Well, I’d had some experience in letting peace be my guide throughout all of this, and I had peace with going through with the surgery. I checked into St. Mary’s Hospital on the Mayo campus on the morning of Monday, August 17. During my admittance physical a nurse grabbed my feet and asked me to push and pull against her hands. When I couldn’t she asked, “Foot drop?” I replied, “Ya think?” The surgery took place that afternoon.

At 4:00 a.m. Tuesday morning the night nurse came to check my vitals. This, too, involved asking me to push and pull against her hands with my feet. I complied, still half-dazed from the drugs and a fitful night. Something seemed strange. “Did that feel kind of strong to you?” I asked her.

“Yesssss,” she said, making notes. Later that morning the resident came and repeated the test. Once again I was able to push down and pull up with both feet. “Wow,” the doctor said. A physical therapist came in a little later and did the same tests. According to him my “dorsal flexion” was at about 95%; he was amazed. The surgeon showed up as the PT was finishing with me.

The surgeon had just wanted to tell me that the procedure had gone well and, as he said before, he hoped that in time I could get some function back. “Well,” I said, “According to this guy here (pointing to the PT),” my dorsal flexion IS back.” The surgeon paused a few moments - perhaps searching for a handle on the moment.

“That’s unusual,” he finally said, in measured tones, before asking me to push down and pull up with my feet against his hands. (You don’t get to be Chief of Surgery and Head of the Department by being easily excited).

Later another PT, a woman, came in to see me and repeat the tests. “Who has Foot Drop?” she asked, brightly. “Not you, Mister!” Still later the head of the Physical Therapy area also stopped in. In addition to the up and down he checked my strength side to side, and found that there’s still some weakness with that movement, but was nonetheless impressed. We thanked the Lord throughout these visits, of course. I was told by one of my many visitors that day (though I can’t remember which one) that regaining motion in my feet so quickly is nearly unheard of; even if the surgery is successful it would take weeks or months - at least several days - for my body to recover from the trauma of the surgery enough  for my feet to regain their range of motion.

You know, there are times when I wish I had a soundtrack playing through my life so that when some big, miraculous thing happens the music would change dramatically to help me get a handle on the moment. It doesn’t affect my gratitude, however, and I like nice surprises!

My recovery from the surgery hasn’t been all hearts and flowers, though. They weren’t kidding when they talked about the post-op trauma. I was surprised at how weak my legs were, and especially how painful. There weren’t any issues with my calves and feet, but the backs of my thighs spasmed with almost any movement, and the pain made me gasp and grit my teeth, even with opiod pain-killing drugs and muscle relaxants. This, combined with not wanting to do anything that might aggravate my just-stapled back, made it very difficult to sleep or move, and lasted several days. I had a hard time even rolling over, needing to use my arms to grab onto something in order to pull myself over, and I needed a walker for a couple of days (and realized how limited you are in what you can do with your hands when you’re using a walker), then two canes for a while and then one cane. In the last few days I’ve been moving around largely without a cane, both when I am using my braces and when I’m not (I’m trying to spend more and more time, and cover more distances, without the AFOs in order to build the strength back in my calves).

Pain was really only an issue for the first week, but the weakness was surprising and frustrating. At one point, as I struggled to sit up or tried to make my legs do what I wanted them to do, I came to the sobering realization of how closely my temporary condition mirrored those of people with advanced ALS. That revelation served to mitigate my whining and turbo-charge my gratitude. It also  turned my thoughts to the PALS I’ve come to know and follow on-line; bringing me to another moment missing a handle.

I know God healed me. Any questions I may have had along the lines of the Mayo simply having misdiagnosed me disappeared moments after I started moving my feet in the hospital (which may have been the reason why these miracles were separated). It’s easier to think about how it happened, though, than it is to think about why it happened. I can assure you that my piety and righteousness had little to do with it. Over the course of this blog I’ve described my thinking and the revelations I’ve received and how my relationship with God through Christ has changed over the past 17 months, but these have been more about me letting go and trying to get out of His way.

I thought I had deep faith and great spiritual insight before this happened, but I found out that my wisdom was worth nearly nothing, and my faith had depths I had barely plumbed. As with Abraham, the father of faith, I did not consider the state of my body to be sufficient to prevent the working of the promises of God. Like Abraham, I have had a constant series of missteps and fears stretching back over decades, yet God has sustained me and my family.

With all my heart, I believe that what God has done for me He can and will do for you in whatever trial you are facing. With all my heart and all my brain I wish I could give you a formula for how that happens - but I can’t. It’s beyond formulas or doctrines, and into the realm of opening one’s heart to the relationship and trusting Him no matter what it looks like. I do know that one of the first things I prayed when turning this over to God was that I wouldn’t “waste this ALS”; I wanted my experience to be an exhortation to others - even if it meant no more than dying well. If there’s one thing I can do it is to assure you that that relationship can and does happen (and deepen) and that if you seek Him he will respond, and amazing people, books, thoughts and ideas will find their way across your path.

And even now I don’t consider that I have fully comprehended His ways or His plans for me. Despite all that I have seen in my life, and all that I’ve experienced the last year and a half, I feel as if I’ve barely begun. From a human perspective, that would be a very discouraging thought. From my new perspective, that is exciting.

In fact, it reminds me of what Tommy Lee Jones went on to say to Will Smith as he helped him recalibrate what he knew and thought was possible. “Fifteen hundred years ago everybody knew the Earth was the center of the universe. Five hundred years ago, everybody knew the Earth was flat, and fifteen minutes ago, you knew that humans were alone on this planet.”

He then said one more thing that I believe applies to you and me and the handle we’re reaching for:

Here are some of the most useful links to past posts on this blog that describe my experience from diagnosis onward:

The Call

The Answer

Bucket List

Possibly my last post on this blog

The perspicacity of hope

Claw marks

To hear the inaudible, see the invisible, do the impossible

Thanksgiving

Doctrine, doctrine, give me the news

[nolongeriwholive]

Hear about my year of living dangerously

It may surprise you to know that I don’t love the sound of my own voice. In fact, I don’t care for it all - at least when I hear it when it’s been recorded. I really need to work on my Sean Connery impression and start talking like that all the time.

Anyway, I had an opportunity to share my ALS testimony with the Inside Outfitters men’s breakfast group back in July, and I found out it was recorded. I was able to download and link this below for the blog. This group is made up of men from a three or four churches and also a bunch of guys going through the Minnesota Teen Challenge residency program for drug and alcohol recovery. I wanted to exhort the group with my testimony of “living dangerously” by deciding to trust God rather than the reports and wisdom of the world or even my own brain and body. This serves as an audio outline of the year between being diagnosed with ALS and then being told by my doctors that they no longer think I have ALS. It’s a summary of the things I did, but more about the things I didn’t do in order to hear the inaudible, see the invisible and do the impossible through Jesus Christ.

Aside from not liking the way I sound, I also wish I was smoother in my presentation and there are things (as always) I wish I had said, or said a little differently. It is my first effort to encapsulate an entire year of awesome into a something less than 30 minutes. (Note: we had few sound issues with the mic in the first few minutes. We were aware of these as they occurred and I spoke louder or repeated myself if we had a dropout. Fortunately, we got it fixed before too much time went on and the rest of the audio is strong.)

Click the link to listen in when I was invited to “Share what God has put on your heart.”

Audio: My Year of Living Dangerously

[nolongeriwholive]

That thing you do

I work in the employee benefits industry. Here's an article I wrote with a different take on my ALS experience, this time looking at it from the role my employee benefits (especially group life and long and short-term disability) played over the past year. Despite being a benefits  industry insider I was surprised by a few things I learned. This article was distributed in June to our EB clients, in appreciation. Some of it will sound familiar to regular readers, but the perspective is different.

Mayo Clinic, April 22, 2014

Neurologist: "Do you like your job?"

Me: "I like it a lot. I’m not sure if I want to do it for the rest of my life, though, if you know what I mean."

A few minutes earlier my neurologist (everybody has a neurologist, right?) had given my wife and I the unwelcome news that I had Amyotrophic Lateral Sclerosis (ALS) – also known as Lou Gehrig’s Disease – and that the average life expectancy for someone with my condition was three years after diagnosis. The news hit us with the kind of cold shock soon to be experienced by thousands of people undertaking the ALS Ice-Bucket Challenge the coming summer. My doctor was a "rip the Band-Aid off all at once" guy, so he quickly continued on with all the unpleasant things we could expect to happen to my body as the disease progressed. That’s when he asked me about my work.

After my response he said, "Well the good news is that when I write ‘ALS’ on your diagnosis, there is not an insurance company out there that will challenge you if you want to go on disability."

Disability? Leave work? A horse race was going on in my mind. The news of my diagnosis had jumped off to an early lead, but coming up hard on the outside were sudden thoughts of what was covered or not covered by my group insurance, of how I’d provide for my family and whether or not (or for how long) I’d need to keep working in order to maintain benefits, and what would happen to these benefits if I stopped working. The ironic thing about all that was that for the last 30 years I’ve helped market employee benefits in one form or another for insurance and reinsurance companies. I created brochures, sell-sheets, table-top displays, posters, enrollment campaigns, direct mail pieces, ads, newsletter and magazine articles – all to promote the benefits of group life, long-term disability, renewable term, HMOs and PPOs, critical illness, supplemental life insurance, and more. I thought I knew all there was to know about these products and how they worked and had, myself, dutifully signed up for similar benefits every year.

And then I was diagnosed with a terminal illness and most of those bullet points left me.

It didn’t take long to reacquaint myself with the basics, and even to learn about some features I wasn’t aware of. My purpose in writing this article is two-fold: first to acknowledge my debt to all of you in our industry whose work has made these benefits possible. When we’re underwriting or pricing a product, or managing a claim, or performing the countless calculations and administrative details that allow these products to do what they’re supposed to – or even just writing promotional copy – we can lose sight of the ultimate recipient of our efforts: people like me! Thank you! Second, I want to describe my first-hand experience in exactly what these benefits have meant to me.

Short-term and long-term disability

I first recognized the value of long-term disability (LTD) coverage when a former boss suffered a stroke at the office. While he eventually recovered and rejoined the workforce, he hadn’t had LTD, and his and his family’s struggles were compounded by the lack of income replacement. I’ve always signed up for LTD coverage as a result, but I initially couldn’t recall if my premiums were paid by me or my employer. It turns out that these were employer-paid, so my 60% salary benefit was going to be taxable. In other jobs I’ve selected the employee-paid option, reasoning that the nominal monthly expense would be more than offset in the event – gulp – that the benefit was ever necessary. On the plus side, I didn’t realize that my LTD benefit would actually be based on my "benefit salary," a combination of my salary and annual target bonus, so the monthly income was going to be a bit more comfortable.

Of course, LTD has a six-month waiting period, but I also had short-term disability coverage (which I had never really thought about). My length of service entitled me to 13 weeks at full pay and another 13 weeks at 60%, but I had enough paid time off in my PTO bank (another benefit) to make up the difference. I could essentially "retire" in early July and experience full pay for the rest of the year.

Group and supplemental life

I’ve always maxed my company group life and supplemental coverage, even as the premiums increased as I got older. It was simple, and "just in case." I soon confirmed that my policy continues on a guaranteed-issue basis while on LTD as long as I pay the premiums. Lo and behold, though, the policy also features a waiver of premium benefit triggered by my disability, meaning I can keep the policy in force without premiums while on LTD. I was also surprised to learn that the policy included an accelerated death benefit that would pay up to 75% of the face amount if I were (ahem) to have less than a year to live. That means I’ll have emergency funds to tap if out-of-pocket medical expenses zoom upward, or, if that’s not necessary, a sizeable "estate" to leave for my family to offset missing out on extended earning years to save for retirement.

Critical illness

While group critical Illness (CI) coverage is not part of my current benefit package (although RGA does reinsure it), it is a useful and usually affordable benefit. A typical policy offers $25,000 or $50,000 lump sums paid without restrictions that would have come in handy to remodel my home to be more ALS-friendly, or to buy a wheelchair-compatible van or any of a number of fun or necessary things that might come up.

An early retirement

After my diagnosis, I was still feeling pretty strong and healthy with only some minor weakness in my legs and a little numbness in my feet, both of which were mitigated by the ankle-foot orthotics (AFOs) prescribed by the Mayo. I had little trouble walking, driving, or typing (as long as I didn’t try to use my toes) and I continued to work for a while as I went about getting a handle on what was supposed to happen to me. The normalcy of coming in to work was surprisingly refreshing. The three-year window predicted by the Mayo, though, had me pondering whether I wanted to invest my mobility in walking back and forth between my workstation and the coffee- break room. It was also becoming harder to keep my mind on long-term marketing plans and strategic objectives. My wife and I decided I’d begin a medical leave in July and "retire" to enjoy my relatively good health as well as to free me up to focus on working through the thicket of Social Security and Medicare benefits and requirements.

My last day in the office was July 3, 2014, and the following week as everyone was going back to work after the holiday, I was sitting on my mom’s patio with a cup of coffee trying to get a handle on this new life. I had my first summer job when I was 12 years old, and since then I’d never had a summer "off." It was kind of fun, but it took a while to get over the "phantom limb" syndrome of thinking that there was something, somewhere that I needed to be doing. I did have a little work to do, though. There was a large, time-sensitive special project at the office that required some unique experience and couldn’t be handed off to someone else in the short term. RGA’s LTD carrier, however, has a provision that allowed me to work up to 20% of my time (basically, one day per week) on something for RGA without affecting my benefits. This project was perfectly suited to that requirement, and I was able to maintain some contact and not feel cut off.

Return to wor – what?

Health insurance was a big concern. While there is very little available in the way of treatments for ALS, it can be a frighteningly expensive condition to manage as it progresses, requiring home and hospital care, therapy, specialized equipment and more to help a "Person with ALS" (PALS) move, breathe, chew, swallow and communicate with others. Plus, I had quarterly trips scheduled to return to the Mayo for its ALS Clinic.

In one of those trips last November, however, I had a second EMG test that showed – to the great surprise of the ALS team - that my test results were nearly identical to the results from the previous April, meaning that the disease had not progressed in my body. My neurologist told me how surprising that was, and that it could indicate that I was an "outlier" in terms of life expectancy – perhaps even double-digits.

With a longer time line and relatively good health I realized I was in a better position to aid my family’s long-term security if I kept working. Suddenly, another feature of my disability benefits became relevant: return-to-work (RTW). While that is a desired scenario for most forms of disability, it is not usually associated with terminal illnesses. Needless to say, my contacts at our disability carrier were as surprised as my ALS team at the Mayo (but not as surprised as the folks in the Social Security office were). Our own HR department was also thrown off just a little by the possibility, and both they and the disability carrier had to do some extra research to be sure that it was not only possible for me to come back, but that it wouldn’t be harmful to my future benefits to do so.

Once we worked through all of that, we began to observe the formalities, including a RTW checklist. Our HR rep called me to ask me some standard questions. One of these was whether or not my healthcare provider offered any RTW coaching. I let that hang in the air a couple of moments before answering, "Well, my healthcare provider really doesn’t have a lot of experience sending ALS patients back to work." We laughed about that, and it was one of many highlights of the RTW process, all of which rank behind being able to "RTW" in the first place! I am exceedingly grateful for both the professionalism and compassion demonstrated by my RGA co-workers and especially by the great people working in RGA’s HR department and for our group life and disability carrier. They may not feel as if they have gone above and beyond in their duties, but it certainly feels that way to me!

As I write this now, one year after the initial diagnosis, I am indeed back at work full-time, in the position that I was scheduled to take immediately prior to being diagnosed, supporting RGA’s global offices. Health-wise, I feel much the same as I did a year ago. I can walk (with a cane for balance) and drive, and I don’t have any problems with my swallowing or breathing. I’m still talking and typing (again, without my toes) and appreciating the entire experience. Since my job is one that is well suited to working from home, that’s what I do (my management and most of my internal clients are in distant cities). I’m happy to be back and contributing, but I will be making sure that I don’t have any unused personal time off to carry over into future years.

I definitely have a different perspective now on the things that used to stress me, and a greater appreciation for the business that I’m in and the people that I work with!

Epilogue: Shortly after submitting this article I returned to Mayo’s ALS Clinic for my regularly scheduled visit. As with my visit last November, the disease had still not progressed any further in my body. In fact, my neurologist is now of the opinion that it is "increasingly doubtful" that I even have ALS! They still don’t know precisely what is wrong with me, but the three-year life expectancy prediction appears to be moot. After a very interesting 13 months I now look forward to a long life, full of normal problems. Strange as it sounds, I don’t regret the experience at all, thanks to the perspective I’ve gained as a result. I have a new appreciation for just about everything – and that certainly includes my employee benefits! – J.S.

[nolongeriwholive]

Skin deep

Today was the monthly men’s breakfast where I help out. It’s an outreach we’ve been doing for almost 20 years, with the cooking and ministry done by men from a couple of churches. The beneficiaries of our efforts are primarily men from the Minnesota Teen Challenge drug and alcohol rehab program. Last year at the June meeting I shared a message about my ALS diagnosis and my faith and expectations going forward. The news hit the group kind of hard; I’ve spent a lot of time with many of them in the kitchen and as an occasional speaker over the years.They have been very supportive.

Then at last month’s breakfast we had a little bit different format and things were kind of rushed, but I was able to take about five minutes to share the news that the doctors no longer think I have ALS. We had a little celebration together but there were people to be fed and schedules to be kept so we didn’t have a lot of time to talk about it. This morning, though, when I walked into the kitchen Rick, Larry, Don, Pierre and Pepe all came up to me and gave me big, individual hugs and told me how happy they were for me, and how great God is. Later in the morning I’d get the same from Leroy, Earl, George and others. I was so touched to see their joy and their concern for me.  

Oh, and did I mention that all these men happen to be black?

You know, it’s been a crazy week. It began with controversy over one person’s racial identity in the state of Washington and ended all the way across the country with a white man killing nine black worshipers in a Charleston church. A black man preached this morning at our service about tearing down walls between the races and we pondered that it doesn’t matter how you are perceived, or how you “identify”. All that matters is how God identifies us, which is by recognizing Christ inside us - something that has absolutely nothing to do with our skin, and everything to do with our heart.

I keep hearing these serious people calling for a national discussion on race; most seem to want to do the talking, and for you to do the listening. Well, they all are welcome to come with me any third Saturday of the month, to roll up their sleeves, and to join in some discussions taking place while scrambling 18 dozen eggs, or frying 10 pounds of bacon, or washing an endless series of greasy pans, or sitting shoulder-to-shoulder, thinking about who we are really supposed to be looking like.

[nolongeriwholive]

Road Trip: Bridges

I guess I’m not finished with this blog just yet. I’m working on another post digging deeper into reason and reasonableness and additional perspective on what I’ve experienced. In the meantime, I think this “Road Trip”*  helps set the stage. This was originally written in August, 2007.

* (essays from my old blog that help illustrate the road I’ve taken to get to my present thinking.)

The bridges of Minneapolis and San Luis Rey, and the Tower of Siloam

Who, what, when, where? Those are the first things we want to know when a disaster makes the news. Close on their heels comes the question hardest to answer: Why?  

That question breaks into two parts, the physical and the metaphysical. Why did the bridge fail structurally, and why were these particular people apportioned to survive, die or be injured? The first question will eventually be known to the millimeter; the second will remain fuzzy. Implicit in the second one, however, is the fear that everything is random, that there is no justice, or that justice is applied on a scale so grand that we can’t calculate it; either way we are left with uncertainty as to just what measure is due us personally. The thing is, we want there to be a reason and order to things, and optimistically assume (or hope) that our own accounts will balance to the “good”; promising or justifying our own deliverance from calamity.

We easily extend our version of grace to others (as long as they’re victims and not members of the opposition party), generously judging them good or innocent by the most general of categories: he was a “nice guy”, she was a young mother. “Why do bad things happen to good people?” we cry. Other people, or other times, might view calamity as judgment or karmic justice.  

Similarly, was it chance or God’s plan that resulted in the deaths in the collapse of the 35W bridge in Minneapolis? Was it God’s indifference that lead to the fall, or God’s providence that the calamity was not more catastrophic? If there is such a “goodness” scale, by what measure can the survivors claim deliverance and what comfort can be given to the families of those who didn’t? How can a former missionary go missing while a child abuser survives?

People didn’t start asking these questions just when President Bush took office, either. In his 1927 novel, “The Bridge at San Luis Rey,” Thornton Wilder tackles similar questions and circumstances in the person of Brother Juniper who tries to ascertain the central failing in the lives of five people who perish when the titular bridge falls into a chasm. (He could come to no conclusion). Going back a bit further, in John 9:2, Jesus was asked about a blind man, “Who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.”   Whereupon he made mud and put it in the blind man’s eyes and then sent him to wash in the pool of Siloam, healing his blindness. Interestingly, Siloam is mentioned again in Luke 13 when people suggest to Jesus that calamity overcame certain people as a judgment. His response: “… those eighteen on whom the tower in Siloam fell and killed them, do you think that they were worse sinners than all other men who dwelt in Jerusalem? I tell you, no! But unless you repent, you too will all perish.”

Or, (excuse my jump in character but not in context), in the words of Clint Eastwood in Unforgiven, “We’ve all got it coming.” The point being made was that no one is innocent, but each may come to the revelation of salvation by grace; by the work of God, not man.

I’m not trying to be dark. In fact, I believe that there is an order and justice in the universe even if we can’t see it all at once. I believe that because, in fact, we are able to see beauty and justice from time to time. If it weren’t so, all would be chaos and despair. Instead, in the midst of the refining fire of a disaster there are gleaming streaks of gold rising through all the impurities; the acts of courage, altruism and goodness in the survivors and rescuers (perhaps even unplumbed in their lives up until that point), and of a community pulling together in empathy and faith.

Bridges are aspirational; tangibly they are an example of our ability to overcome an obstacle to achieve what we want. The failure of one is not just a challenge to getting what we want, it is a repudiation of our ability to even conceive of it; the cutting of the tight rope woven of our doctrines that we walk to find our own salvation. In Mark Helprin’s book “Winter’s Tale” the allegorical and eternal Jackson Mead, an engineer representing either Lucifer or man (I go back and forth on this), strives to bend steel, nature and his will into casting a tremendous bridge of light to Heaven that — like our human understanding — touches the far shore for a moment and falls. Yet one of the messages of the book is that the balances are exact; and one thing cannot fall without something else rising and even more gloriously.

The 35W bridge fell in a crush of broken steel, concrete and bodies — and though the dust sought to obscure it, we could suddenly see something clearly: we are the bridges, standing in or reaching across the gap for and to one another.

Standing, always.

That the work of God might be displayed in his life. Hmmm.

- May 27, 2015

[nolongeriwholive]

But, Catherine, everything's that true despite us - the things they're talking about, natural laws - will always remain true despite us.  What matters is what's true because of us.  That's what's up for grabs.  That's where the battle is.  One remembers and values one's life not for its objective truths, but for the emotional truths...The only thing that's really true, that lasts, and makes life worthwhile is the truth that's fixed in the heart.  That's what we live and die for.  It comes in epiphanies, and it comes in love, and don't ever let frightened people turn you away from it.

Mark Helprin, from “In Sunlight and in Shadow”

A Kingdoms Coda

In my last post I described how we live in two kingdoms at once: the world that surrounds us and the Kingdom of God. The quote above is one that I read often during my “year of ALS” because it’s one way of understanding these kingdoms: one a kingdom of natural laws that are true despite us, and another kingdom of emotional truths - or supernatural laws - that are true because of us.  What are those things? 

First, let me say that I love Helprin’s writing. No one else makes me pause, frozen in awe, as often as he does. Sometimes I don’t even quite grasp what he’s saying, but I know I’ve just read something beautiful and true and I have to let it settle into me. That’s what happened with this excerpt. Like a slowly unrolling scroll, or an opening bud, it’s mysteries were revealed to help me comprehend a greater mystery.

What are the natural laws that are “true despite us”? They are the things we see around us and pit ourselves against daily, and that we humanly can’t seem to fully overcome despite our goodly intentions. They are the laws dictated by the nature of Man: greed, folly, self-serving lusts and perverse do-goodism that call for more and more written laws that avail nothing; they are ways that seem right to a man but whose end is sickness and death (and the short-term enrichment of a few). We are distracted into fighting unwinnable battles against the nature that will always remain true despite us.

We need to fight (often with ourselves) for what’s true because of us; that is, what God has done for us - faith, love, salvation, healing, fellowship, and a likeness of God’s nature. The objective truths that Helprin refers to could be things such as how much money you make, your clothes, your house, all the stuff that has to be divvied up when you die. The emotional truths are the strength and character of your relationships with God and especially with other people; they are the things that can’t be divvied up, they can only be multiplied because these are what live on in others.  

That’s what’s up for grabs, that’s the truth that’s fixed in the heart and what is worth living - and even dying - for. It comes by revelation (epiphanies) and by love, and it can be scary to to step away from the objective in order to pursue the truth that’s fixed in the heart, but don’t be frightened.

[nolongeriwholive]

Possibly my last post on this blog

"Son of man, stand on your feet and I will speak to you." - Ezekiel 2:1

This is definitely the longest, and possibly the last post on this blog. No, I’m not dying. Far from it, as it appears. Last week I spent 3 days at the Mayo Clinic for a series of scheduled exams, and one unscheduled exam. The weakness in my lower legs, and the drop-foot and partial numbness in my feet are all still there, just as they have since before I was diagnosed a little over a year ago. It’s what is not there that stands out.

Normally by this time in the disease’s progression my upper legs should be weakening, my hands and arms shaking, the skin on my lower legs twitching as the damaged neurons fire on their own. I’d quite possibly be in a wheelchair and may even have a feeding tube. I might be slurring my words. None of that is happening. My neurologist also asked me how many times I’ve fallen down. When I told him “zero” he got me up on the table and started testing my reflexes and touch sensitivity, as well as the strength in my hands and arms. He then dimmed the overhead lights and examined the muscle structure in my legs with a pen-light. He turned back to his desk and I put my jeans back on and sat on the small couch, next to my wife. The doctor studied his computer screen, shook his head and turned to us.

“I don’t want to put you on an emotional roller-coaster,” he said, “but I’m not so sure that you have ALS.” (So much for that.)

It wasn’t a complete shock; in preceding trips to the clinic the diagnosis has gone from “95-98%” sure; to “90-95% sure,” to “possible ALS”, to “increasingly doubtful ALS” on Tuesday morning. I’ll come back to what it might be, if not ALS, later. First, let’s look at the three possibilities to explain what has happened. 

I never had ALS; it was something else.

I have ALS, but it is an unusual form that progresses very slowly (and there are documented cases of this)

I had ALS and it has been healed or arrested

Taking these possibilities point-by-point:

1. I never had ALS, and there’s been something else wrong all along.

That’s logical. Further, my wife has never believed that I had ALS, and the first words out of everyone’s mouths when I first told people of my diagnosis were, “Are they sure?” I usually said, “Well, it’s the Mayo, not the people who created MNsure.” The fact is, ALS is a disease diagnosed by exclusion; it doesn’t show up in body fluids or tissue, or in x-rays, MRIs and CT-scans. EMG test results are a reliable indicator, but diagnosis starts with ruling out every other possible disease that can be detected.

The comprehensive battery of tests I underwent last April ruled out Parkinson’s and MS, as well as two other forms of motor-neuron disease. The MRIs showed some stenosis in the neck and lower back, but these weren’t thought to correlate to the nerve symptoms in my legs. The series of incomprehensible (to me) tick marks from the EMG, however, said ALS. Nearly identical tick-marks in November from a second EMG said the same thing; of course, they shouldn’t have been nearly identical. Presumably, given my symptoms haven’t advanced, those tick marks still say the same thing and a neurologist seeing these for the first time may make the same diagnosis. Still, the Mayo has been at this longer than just about anybody; they were the ones, in fact, who diagnosed Lou Gehrig. Nobody’s perfect, but Saudi princes don’t fly into Rochester, MN in their private jets for the weather. The Mayo’s pretty good at what they do.

2. I have ALS, but it is an unusual form that progresses very slowly.

I'm told that each PALS (People with ALS) condition can be a little different and that some people progress slower than others, and can even plateau in different stages. My neurologist acknowledges that this is a possibility, and initially said I could be an "outlier" last November, but by now even that is unlikely. I guess I could be an "out-out-lier".

Or, it could be my Enemy is an out-and-out-liar.

3. I had ALS, but it has been healed or arrested.

Since there was no change in the EMGs between April and November, and no change in my physical condition since being diagnosed, could it be that the disease was halted in my body, perhaps as early as the week of my diagnosis when our family gathered in Iowa for praise and worship (not protest), or in the following weeks as numerous friends and family stormed Heaven on my behalf? I don't think God works on the telethon method of prayer where as soon as you hit the 10,000 prayer mark the healing is released, but I have seen fervent and effective prayer that availed much (James 5:16). Yet I still have the bum knee and drop foot - and if I was healed of ALS, why would I have to live for a year thinking that I had that hanging over me? Let's examine this, too.

My year of living "dangerously"

I think I've been pretty consistent throughout this blog that I found peace early on in whatever God had in store for me, but that I definitely left room for the possibility of being healed. In The Call I laid out my personal revelation of my own spiritual hubris and how I needed to re-position myself, and the peace I gained as a result. In the follow-up post, The Answer, I described the difference between being heard and being answered - and the inspiration to try and use this blog as a way to encourage others to follow along with me to see where it might lead - either to longer life, or a useful perspective on dying. I could imagine and accept both outcomes as I tried to become more attuned to seeing God's perspective. Even in the naming of this blog - No Longer I Who Live - I tried to graciously accept the death of my "old" man so that I could better appreciate the Grace that I felt surrounding me that I might hear the inaudible, so I could see the invisible - and do the impossible.

That may sound crazy, even dangerous, but this experience has not been wasted on me. I have recalibrated a lot of my life and my thinking this past year. I was already looking more at the "why's and wherefore's" of God's words, rather than the "do's and don'ts"; this took a deeper turn after the diagnosis. I also found myself thinking in terms of "weeding" vs. "seeding"; that is, being more focused on what I was sowing into my life, my family and my world vs. the things I was trying to root out, and trying to become a person known for the things I was for rather than the things I was against. Perhaps Christ would have taken me along this path anyway, but I had been living a distracted life, and this situation brought me a clarity and focus that should stick with me for a long  time (and, I hope, forever). I'd like to hope, as well, that other people have gotten something similar from this experience, too.

Healing and the Kingdoms

I believe I have been healed, supernaturally, of ALS. Some may say that is improbable - perhaps even more improbable than the meager statistical percentage of a natural or lucky remission, or that I have a rarer and slower-acting form of the disease, or that the Mayo made a mistake, or that there is some “natural,” if yet unknown, explanation. And I’d say, “Of course; and who created the natural?” I’m also reminded of the statistical improbability of me surviving the first weekend of my life, or of my wife having two children (including a red-haired, blue-eyed girl by special request) despite having a tubal ligation and being ravaged by endometriosis, or my former manager’s life and speech capabilities being spared after a massive stroke, or other wonderful things I’ve seen.

I wish I could give a simple answer or useful doctrine for how the miraculous intercedes in this life. If I could, there’d be a lot more miracles happening around me. I can assure you, however, that it does happen and that it has little to do with my piety or any perfection in my life. I can also assure you that believers live in two kingdoms simultaneously (Luke 17: 20, 21) and this is a gift of grace to us. There are things we can do that allow us to perceive and experience more of the Kingdom, but in the things I’ve experienced it may be more about availability and expectation rather than ability. We often trip over ourselves trying to figure it out. My personal belief is that miracles are the currency of the Kingdom. If we were living fully in the Kingdom we'd think nothing of it when they occur. When we just visit, though, we're all about the exchange rate. I think the key for me in this situation (unlike other times), is I let go of any thought that I might dictate to God what should happen to me -  or how (see “The Call” link earlier) and said “I want to focus more on what You want me to do, and less on what I want You to do.” When we got the good news last week, my wife and I were very pleased, but we weren’t necessarily shocked. 

Kicked out of the club

At the same time, my heart aches for my brothers and sisters in the PALS (Persons with ALS) club - even if the Sergeant at Arms now escorts me out. I know I have gained great insight and encouragement from their courage and, almost invariably, their positive attitudes. I don’t know exactly how I originally expected the PALS I met in person or on-line to act in the face of their condition, but they each exceeded my expectations by miles. None said it better or more powerfully than Anne Neu, though, in her post:

“Here’s the hard truth. I’m not grateful that Jon has ALS. But I don’t believe we need to be grateful FOR our trials, we need to be grateful IN our trials. Our happiness can’t hinge on our circumstances. We can choose to live at the mercy of what happens to us, or we can choose to live a life of happiness.Sometimes we feel sad. It doesn’t change the fact that we choose to be happy.”

I don’t know that I have any better handle on “why me” than I did back when I shared  Doctrine, Doctrine Give Me the News after getting the first "no progress" report last November, indicating that this affliction might not be unto death. As I said then, we want there to be "one weird trick, or three simple things, or maybe seven effective habits, or ten commandments, or 12 steps to give us a formula for success."

Perhaps there is just “one weird trick” as described in Proverbs 3:5-8 -

Trust in the Lord with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths. Do not be wise in your own eyes; Fear the Lord and depart from evil. It will be health to your flesh, And strength to your bones.

Trust in the Lord and lean not on your own understanding. Leaning on my own understanding limits me unnecessarily when there is another who knows more than I do and is not constrained by my ignorance. If I lean on my own understanding then I’m standing in the wrong place. For that matter, we all are standing in the wrong place; God wants to move us to the right place. As 2 Corinthians 1:20 says, “All the promises of God find their yes and Amen” - not in me doing everything correctly, but  - “in Him, to the glory of God through us.”

I am learning I can trust in the “yes” of God. I believe the same is available to others, to you, as well. Not because I tell it to you, but perhaps because if I share my experience you are encouraged that it is possible to experience that revelation for yourself.

Full restoration

So what about that knee that needs to be replaced, and the stenosis in my lower back? If God is doing a healing work, why leave the job unfinished? As one of my friends said on Facebook the other day, “Oh, to know the end from the beginning!” Is my deliverance from ALS an end to itself, or just a beginning? If I’ve learned nothing else in the last 390+ days, is that my logic and understanding will always fall well short of God’s. Could it be it was easier to turn what is impossible to Man over to Him while reserving knee replacements and drop foot for myself? I know I’ve been guilty time after time of clawing back things that I supposedly turned over to Christ, and this may be one more lesson for me (though that implies that I may someday have everything figured out; another conceit of man.) The answer to those questions is a giant, “COULD BE.” I am looking forward, however, to how this eventually turns out, whether through skilled healers or the Great Physician. 

“Or is something within me still like a beaten army fleeing in disorder from victory already achieved?“

I do confess, however, that despite the love and support I took from my family and my faith, and the encouragement and insight I gained from others, I had a couple of bad days when I felt frustrated and even ill-equipped for what I thought I was facing. Interestingly, these both occurred within a day or two prior to me receiving breakthrough news at the Mayo, back in November and again last week. How often are we at risk of letting go of what we’re holding out for, just moments before the answer comes?

I also gained a new appreciation for the axiom: “Don’t sweat the small stuff. And it’s all small stuff.” That was an effective stress reliever in many ways. Now, however, as I look ahead to a future that has been re-opened to me, I’m struck with a new thought: Why should my life be full of so many small things? I want to do big things. As a result of this experience, I believe these are yet within my grasp. Perhaps this blog will continue after all, but along those lines. It is, after all, no longer I who live.

My deepest thanks to everyone who has come this far with me.

“Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.” 2 Corinthians 1:9-11

- May 17, 2015

[nolongeriwholive]

Road Trips: The reason for grandchildren

There’s been some sharing on-line today about a philosophical article suggesting that a big reason behind social injustice these days is that strong families impart an unfair advantage to their children and so, in the name of social justice, we should consider prohibiting certain kinds of parental involvement that is especially beneficial in producing strong children. (No, I’m not going to link to the article). It did remind me, though,  of a piece I wrote in 2011 when my oldest grandson was still a baby and I had the opportunity to see some of the lessons my wife and I passed onto our daughter being reflected in the way she and our like-minded son-in-law were raising their son. I also saw the indications in my old post that the best hope for social justice may lie with strong families raising strong children able to make a difference in the lives of those receiving fewer “advantages”:

The reason for grandchildren (January, 2011)

Down among the reeds and rushes A baby boy was found His eyes as clear as centuries His silky hair was brown

Never been lonely Never been lied to Never had to scuffle in fear Nothing denied to Born at the instant The church bells chime And the whole world whispering Born at the right time

-Paul Simon, “Born at the Right Time”

Our pastor likes to say, “God gives you children so that you can grow up.” The point is that your thinking changes when you realize the long-term responsibility you have, and your behavior (hopefully) changes when you start to recognize your less admirable traits showing up in your children. Unless, of course, you don’t mind your child turning into a despicable evil genius.

A second thought along this line occurred to me the other day: “and God gives you grandchildren so you can mature.” By that I mean the satisfaction that comes from seeing all the things you worked so hard to put into your child manifest itself in and around your grandchild. It’s the pay-off for the blood, sweat, tears and unpopular decisions you made to strengthen your own character as well as your son or daughter’s and it comes when you see how they love and teach their own children in turn, perhaps even with a greater patience and discipline than you yourself possessed at the same stage in your life. It’s at this point that you realize that your hopes for the future are bearing fruit and your work has passed from your hands.

I also realized that the same thing applies not just to the natural children you’ve borne or created, but to the “supernatural” or spiritual children you’ve discipled in the faith. How warm and glorious a feeling it is to see these children living on and sharing the things they’ve learned with others. Whether with natural or supernatural children, this is the point where you are truly overcome with the realization that something of you really is going to live on.

As an aside, this revelation may have germinated with me last week at the Bible study I lead at the Red Wing correctional facility. As it happens, each of the men in the study will be released at some point this year and I was moved to read the short chapter of Isaiah 61:1 to them. The first verse — “the LORD has anointed Me To preach good tidings to the poor; He has sent Me to heal the brokenhearted, To proclaim liberty to the captives, And the opening of the prison to those who are bound…” — was what had first caught my attention, but it was the rest of the chapter that was the most powerful because it deals with what can happen for those that receive that word and that liberty. Among these is in verse 3 — “that they may be called trees of righteousness” — and especially verse 9: “Their descendants shall be known among the Gentiles, And their offspring among the people. All who see them shall acknowledge them, That they are the posterity whom the LORD has blessed.”

The mens’ faces were a bit gob-smacked as I challenged them to be those trees and I saw the realization soaking into them of the effect they could have into the next generation and the next in the families they had yet to create. “You have the chance,” I told them, “to have your grandchildren say of you either that ‘Grandpa did 10 to 20′ or that ‘Grandpa was a mighty man of righteousness who was an example to our family and set my feet on the path.’”

And T. added, “Or they could say both.”

Amen.

As for my own grandson, now five and a half months old, his face often has gobs of different things on it, but it is almost invariably smiling. And why shouldn’t he? He is literally surrounded by people who love him and are happy to see him and quick to want to hold him. As the Paul Simon lyrics said at the beginning of this post, he’s never been lonely, never been lied to, never had to scuffle for fear or had anything he needs denied to him.  If called upon I would gladly and readily pour everything I am and everything I have into him, but I can relax because I see that  my  daughter and her husband already know what it is they have to  impart. My heart overflows with joy when I watch my grandson or hold him close and at the same time I feel an ache knowing that every day the news brings stories of babies that are resented, cursed and abused.

I look into his eyes, as clear as centuries, and stroke his silky brown hair and think of those born into suffering now and the deprivation they face that goes beyond mere food, clothing and shelter. I think of their lives and future paths leading into captivity and the need for someone, someday, to bring the words of liberty. And I hold my grandson even closer and whisper into his ear, “Born at the right time.”

“Road Trips” are a series of posts I’ve written in the past that describe “the road” I’ve taken to get to my present thinking. 

- May 6, 2015

[nolongeriwholive]

Give me one good reason why I should never make a change

Above: a house in Budapest.

My 21-year-old daughter, Patience, is about ready to fly the coop. For the past two years she’s been working toward moving to Prague to live for one or possibly two years to teach English as a second language (ESL), and now she’s got (almost) enough money saved, she’s enrolled in the certification program over there and the one-way airplane ticket has been purchased.

And in perhaps the most extreme case of helicopter-parenting you’ll read about today (but probably not this week), my wife and I are going with her for the first two months, with our own little side-trip to Budapest on the way (the kid’s going to have to meet us in Prague, so tough noogies). Under normal circumstances this would be a pretty big change. I’m not sure what we’d even call normal anymore, but now it’s a big boulder-in-your-throat kind of change. This is something Patience has been wanting to do for some time as she accumulated college credits at a breakneck pace to graduate at age 20, and since well before I was diagnosed a year ago.

In part you can blame her mother who once told her to do something big while she was young and unattached rather than waiting until she was older. (And the kid listened; go figure). I’m not so sure I was ever 100% on-board with the idea since I know I’ll really miss having her around, but I mostly kept my own counsel and hoped that Patience would get distracted and pursue something else. It was a vain hope, of course, because I’m in a position to know better than anybody that there’s never been much capable of distracting this girl when she has her mind set on something. Even when she was little she was the one making plans and carrying them out. Dedicate her nine-year-old entrepreneurial self to earning the funds to buy an American Heritage doll? No problem. Write 50,000 words in one month for NaNoWriMo at age 13? She could do it in her sleep (in fact, I think some of it may have been written in her sleep). Win the first short-story writing, novel-writing and play-writing contests you enter? Check, check and check.

So - oh, me. Oh, my. 

To tell you the truth, this situation was one of the first things I thought of after the initial shock of the diagnosis last April. To say I was conflicted is an understatement, especially in context of the doctor saying average life expectancy is three years. I had a rising hope that, given that kind of window, she might decide not to go; I felt bitter regret that she might not want to go, and that my health would be the cause of it. As much as I want to greedily hoard every moment, greed carries its own seeds of bitterness within.

Furthermore, if you’ve been following this blog, you know we have a different take on “life expectancy” than the doctors. That is, we are much more “expectant” of God’s grace and power in our lives, and we’ve seen that borne out this last year as the disease has been slowed nearly to a standstill and I’ve been able to return to work and do all kinds of “normal” things that are nonetheless bathed in the awareness of just how special they really are. You may also recall that I’ve talked about bucket lists here. While travel is something people often want to do when diagnosed with a terminal illness, it really hasn’t been that high on my list. I’ve traveled a lot in my life, and loved it, but my focus is on what I can put into other people’s buckets, rather than what I can cram into my own. This new opportunity is actually a chance to travel AND pour some memories and adventures into someone else’s life; to help set the stage and open doors for the exciting future we believe is in store for her. 

Isn’t that what any parent really wants? We know that at some point - near or far - there have to be things that live on after us, no matter how tempting it is to keep things the same. Bittersweet is the word that was invented to describe the process of resisting and embracing change at the same time. So, give me one good reason why I should never make a change, to be willing to accept all that will come in both faith and hope (which is expectation), in order to open the door to go out, rather than hold it closed against what may try to come in. To paraphrase George Ezra: “My fear, my loneliness; my blasted selfishness...

“But for you, you, I’d leave it all.”

Below: Prague

- April 28, 2015

[nolongeriwholive]

One year on

It was a year ago today that my wife and I sat in an examination room in the Mayo’s neurology department to hear the results from all the poking, prodding, scanning and zapping I’d been through in the past month to finally get to the bottom of the chronic weakness and muscle spasms I’d been having in my legs the past few years. Our daughters were down in Iowa, where the oldest lives and where my youngest was visiting. I had been warned, and had shared with my immediate family, that ALS was one possibility. Still, there seemed to be so many logical explanations why it couldn’t, shouldn’t be ALS.

Well, you know how that turned out. My neurologist was compassionate, but blunt, sharing the diagnosis and a fairly detailed outline of what we could expect to happen to my body. The next hour was spent in a kind of haze that felt like a bad dream in the middle of a sunny day. The first challenge of the disease was to try and figure out how to share the news. What we discovered - and what my neurologist had already realized - was that there was no way to sugarcoat things. You can try and put a ribbon on the grenade before you hand it to someone, but it doesn’t make much difference. 

On the other hand, you do gain a certain amount of clarity. We both knew exactly what we needed to do next: gather as a family. We called our bosses and cleared our calendars for the rest of the week. We called our daughters, Faith and Patience, and gave them the news and said we were going back to South St. Paul to grab some clothes and then we were coming their way as quickly as we could. Faith thought that was a good plan, and told us that until we arrived she wanted us praising God (not that we needed much urging). We did that, but I don’t remember much as we drove through the afternoon and into the evening before reaching Faith’s house in the dark. As I parked the car I saw my girls come outside, and as I unfolded myself from the driver’s seat they stood in the beam of the headlights, poised to pounce. I stood up, took a breath, looked at them and then threw my arms out wide, whereupon they both zoomed in to wrap me up and the gut punch I had received hours earlier started to fade.  

Over the next several days we prayed together often and Faith organized evening praise and worship sessions in her living room. Our prayers weren’t prayers of woe or weeping, but of thanks to God for all the miracle provisions already made in our lives over the years and for His hand, guidance and peace to get us through this latest challenge. We spent time talking, laughing, and playing with my grandkids; sharing ideas that came to us. One of the ideas that came to me was to start this blog as a way to keep friends up to date, but also to share the process with others of how I am trying to move from being a “thinking Christian”, where I pick and choose what I believe, to being a “Christian thinker” where I try to see all things from Christ’s perspective and not solely from the doctrines of man (especially my own).

Being wrapped in the arms and love of my family those first few days, and knowing that we were of the same mind, was a tangible example that I was not, and would never be, alone. The evening before my wife and I were to return to Minnesota my son-in-law had a project in the basement, my grand-kids went to bed and Marjorie and the girls went for a walk. I was in the living room reading by myself when I realized that for the first time since getting the news I was by myself. My breath caught for a moment, but I let it out in relief and gratitude for all that I had received from my family, but also from God’s word and spirit that had been rushing over me, reminding me and confirming for me that I had already been called out of death and into a new life; indeed it was no longer I who live, but Christ who lives in me. Whatever form that new life may take, let it be a useful one.

(I shared this video on this blog early on, but here it is again: Faith and Patience singing “Sweetly Broken”, which was one of the evening songs we sang.)

- April 22, 2015

[nolongeriwholive]

Who am I? They often tell me    I would step from my cell’s confinement    calmly, cheerfully, firmly,    like a squire from his country-house.    Who am I? They often tell me    I would walk to my warders    freely and friendly and clearly    as though it were mine to command.    Who am I? They also tell me    I would bear the days of misfortune    equably, smilingly, proudly,    like one accustomed to win.    Am I then really all that which other men tell of?    Or am I only what I know of myself?    Restless and longing and sick, like a bird in a cage,    struggling for breath, as though hands were compressing my throat,    yearning for colors, for flowers, for the voices of birds,    thirsting for words of kindness, for neighborliness,    tossing in expectation of great events,    powerlessly trembling for friends at an infinite distance,    weary and empty at praying, at thinking, at making,    faint, and ready to say farewell to it all.    Who am I? This or the Other?    Am I one person today and tomorrow another?    Am I both at once? A hypocrite before others,    and before myself a contemptible, woe-begone weakling?    Or is something within me still like a beaten army    fleeing in disorder from victory already achieved?    Who am I? They mock me, these lonely questions of mine.    Whoever I am, Thou knowest, O God, I am thine!

Dietrich Bonhoeffer

A poem I’ve had on my office wall for years, written by one of my heroes, who was executed by the Nazis 70 years ago, on April 9, 1945.

[nolongeriwholive]

That was the week that was

When you get to be my age, the years and birthdays tend to blur together. I remember turning 21 in Paris, and few other key milestones, but most are just a happy blur. Except for last year. Sure, how hard can it be to remember a birthday just one year ago? I've a feeling that one is going to stick, though.

My birthday is April 3. Last year, on Monday, March 31st I had a call with my boss who told me that our new boss wanted to pull me out of the Division I'd been working for almost 20 years and make me available to the company as a whole. On Tuesday, April 1 (yes, April Fool's) I was down in Rochester, MN at the Mayo. I had been there a couple of weeks earlier to get scheduled for a knee replacement, but the orthodpedist strongly urged me to have a neurology exam first, which turned out to be on the first. That was the "first" day that the neurologist told me they thought I could have ALS, and that they wanted to do a comprehensive series of tests to confirm the initial diagnosis.

Wednesday the 2nd I returned to the office and one of the people that worked for me had put a meeting on my calendar for first thing, in order to give me her two-week notice. That's happened before and I knew how crazy things were going to be for me until she could be replaced, but my internal reaction was more like, "Well, that's interesting." Then, on Thursday, April 3, my birthday, my uncle passed away early in the morning. My memory fades about that point - I'm sure there was a Friday that week, but I couldn't tell you a thing about it. 

The next few weeks were chock full of crazy as I simultaneously had to work out a plan to transition from my old job to a new one while trying to figure out how to cover the responsibilities of my departing team member, schedule more tests and trips to the Mayo and, oh yeah, schedule some grieving time for all that was lost or was in the process of being lost. I don't recall being overly stressed, though. Perhaps it was because I'd been through much of this before, and whle "Uncle Lou" was new, I had faced and overcome cancer in the past. Remembering the things I'd been through - job turmoil (even unemployment), uncertainties, deaths in the family -  and how they had all turned out, gave me peace. I also remembered the excerpt from her journal that my mom sent me right after my fiftieth birthday. This, too, helped me remember that it had taken a few miracles for me to even get here, and there was no reason to think anything was going to change now.

When I was first pregnant with John, it was difficult for me to accept that we were going to have a baby so early in our marriage. We’d had two weeks while he was on leave after we got married. Then he was gone seven months and bingo! Pregnant! I was working, had been working before we got married. My salary was needed because as A1/c the pay was meager. Benefits with medical, but buying groceries, paying for a car and putting gas in it, plus payments on our ‘palace’ on wheels that measured 8′ x 28′ including the hitch didn’t allow us to run the little oil stove at night. In Texas, there’s nothing to stop the north wind but barbed wire, so we turned it off around nine o’clock, went to bed when it started cooling down. Chuck got up at four a.m., ran on tip-toes and pranced while he lit the stove and got it started again. He’d jump into bed and touch me with his cold feet, wanting help to warm them. THANKS!

Before we knew it, I got up one morning hemorrhaging. Off to the hospital, admitted for three days, baby saved. How weird. This is October 11, 2007 and it was October 11, 1957 when this emergency happened. But, I had to quit work. No housework, not even sweeping. Stay off your feet and lay low. Then in November, I got the Asian Flu which was the first of the many flu bugs that started taking the nation for years. Into bed, racked with chills and fever, sick and afraid I was going to lose the baby I hadn’t thought I was ready for. Chuck said at the time he felt that I really needed him. I had been so darned independent and sure of myself.

 John was born April 3rd, three weeks and two days early. He was six pounds, 1/2 ounce. We had some dreadful experiences after he was born. He was put into the incubator and Intensive Care. The pediatrician and obstetrician told me while I was still in a deep fog from being over anesthetized, “Mrs. Stewart, we usually take the mother to see her baby before she goes to her room from recovery. However, we are very concerned. He’s having some difficulty. We aren’t sure if it’s the heart or the brain, but for his sake we can let you see him through the window but you won’t be able to hold him.” So I said, “I understand, better safe than sorry,” and went back to sleep. I did see him through the window. It was hard to believe that this was our baby. But I was still so groggy that I was asleep in the wheelchair before I got back to my room.

The next morning, Chuck was there. “What’s wrong with our baby?” I cried. “He’s fine, Marilyn, he’s fine.” So throughout the day as I awakened more and more I was torn apart by wanting to hold him and not being able to. The girl in the room with me had her baby. She was a minister’s wife and they named him John Paul. The next day, about ten o’clock, a nurse came into the room. She glanced at the chart at the foot of the bed and said, “Stewart. Oh, honey, we nearly lost your baby early this morning. If it hadn’t been for the intern on duty that suctioned him and suctioned him, he wouldn’t be here. In fact, we don’t know if he’ll make it!”

I was terrified, but supposed to act like an adult, I don’t know. I called and called for Chuck. He didn’t answer. Visiting hours came and I was still calling and he wasn’t showing up. Where was he? Didn’t he know our baby was about to die? I was racked with anguish and anger, where was he when he should be here with me? It was Easter Sunday, too. About three o’clock I got out of bed and went to the window and looked out, as if I could see anything. While I was standing there, tears running down my face, I heard, “Marilyn, what are you doing!” I turned around and there was Chuck with my Mom. He had called Mom and Dad in the wee hours of the morning and told them what was happening. Mom got the first plane out of Indianapolis headed for Fort Worth. They were both upset that a nurse would tell me something like that. I bemoaned that I hadn’t even had a chance to hold my baby. And couldn’t they at least let me do that, just for a few minutes? They did arrange it. I held this tiny bundle that looked up with blurry eyes, a very unhealthy baby with jaundice. That scared me, too, but I’m a MOM, and he was the most precious thing I’d ever held, other than his Dad. “John Avery, you will make it, you WILL, do you know that?”

Mom stayed a couple of days after we got out of the hospital. A week after he was born, the pediatrician said, “I can’t believe that this is the baby that was so sick. This is a miracle. We didn’t expect him to survive but we released him to his parents with hope against hope.” Now look at you, John, you big old woolly bear. You still curl your hair with your fingers when you read, just like you did when you were a baby, and guzzling a bottle empty, contented and full.

 I will make it. I will.

- April 3, 2015

[nolongeriwholive]

Taking a step, taking a seat

“ALS has its own gravity, strong enough that each repeated orbit is always just a bit smaller, a hair closer to the sun.”

Those are the words of another PALS (Person with ALS), Dr. Bruce Kramer, from his book entitled “We Know How This Ends: Living With Dying.” They describe the gradual but inexorable failure of his body. It was a shock when I read that today, because I’ve been having very, very similar thoughts lately, along with images of a large fish racing away with a line streaming from its mouth - waiting for the tug.

I’m still walking. I’m still driving. In fact, when it comes to driving I’ve even been capable enough to maneuver hundreds of miles through heavy ice and snow storms twice in the last six weeks, even with my ankle braces. But my left knee - the one that needs to be replaced - hasn’t responded fully to the synvisc injection. The pain is mostly gone, but the left leg is weak and unwilling to do its share, which means more work for the right leg and also means that I use my cane almost all the time now to take some of the strain and to help me maintain my balance (on the plus side, my grand-kids all love playing with the cane, even Little John.)

BUT, my legs get tired very quickly now. So much so that when I take a shower in the morning I can hardly wait to towel off and get out to the bench in my bedroom where I sit to put my socks and braces on.

When I was first diagnosed, my physiatrist said that I could get a special chair that fits in the shower and would let me sit down. “Thanks, but no thanks,” I thought to myself. The last couple of weeks, though, as I lunged for my bench, I’d started thinking of getting a shower chair. I even found a very affordable one on Amazon. Yet I couldn’t quite bring myself to order it.

The cane was one unsteady step in a direction I didn’t want to be going; a little tug on the hook. A shower chair was another tug, or a step on a slippery slope (and with my feet I have a lot more trouble with slopes than stair-steps). I’ve been fighting the line because, you know, sometimes the line breaks. At the same time I’m also realizing that I can wear myself out trying not to die - to the point where I have no energy to live. As Bruce Kramer also wrote:

How's this for a good death? It is predicated on a good life, one in which we take the opportunities given to make the way a little better for others.

It is looking for the good in each gift of a waking day.

It is understanding that a good life is easy when everything seems like it is going your way, but the proof of goodness comes when conditions are most adverse, when the deck is stacked against you, when the most mundane of behaviors might require a day's worth of energy.

Rather than a limitation, the cane extends my ability to go where I want to go, to do things I want to do, to see people I want to see. Any energy I can save by sitting down in the shower (and health issues I can avoid by not falling down in the shower) means more of my finite energy can go to visiting my grandchildren, or going to the prison, or doing anything that allows me to make things a little better for someone else.

I can get a shower chair for free from the local ALS society chapter, but I’m working now and can afford to buy one for myself, whereas there may be someone else today who needs that free chair. At some point I may need a walker, or a wheelchair or something else and I will do what I need to do to have the strength to be where I need to be.

So, today, I ordered the seat.

And today, you should also know that Bruce Kramer found a good death. 

Thank you, Bruce.

- March 23, 2015