Three Years On (and On)

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by the Night Writer

(reposted from No Longer I Who Live)

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.

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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 who 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 was 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; most 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’ve 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. 

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