It’s 3:43 a.m. and I know I am to write to you. What I mean by that is my heart has finally let me know it is ok to share a few thoughts with you. Most of my letters are expressions of what Jane and I have come to know of the Joy of the Gospel, the Wonder of the Love of God in our lives. This letter will be a bit more of a personal statement about the current event in our lives, the onset of Guillain–Barré syndrome on March 21st. While a personal statement, it’s also kind of a blunt statement, that reflects the situation of being very critically sick and maintaining Faith.
Let me start by saying that this experience is not about increasing our Faith or testing our resolve. Our Faith is like a balloon, and going through this experience has not added air to that Trust. Likewise, I must say that we do not feel that it has taught us a new, great Truth. Actually, it has created much difficulty. I say that without complaint. Many people have gone through times such as these; we are not experiencing anything different from what millions of other families have experienced. But it has, as with everyone that has faced such issues, challenged us on every front, not just physically but in every facet of our daily lives. Jane and I both find no attribution to the hand of God in this, as I mentioned, no lesson to learn from this. We Trust in a God of Love, Peace and Grace. Our Faith is in a God who does not visit this kind of terror on His children, but comforts them during terror. He does not require us to solve a great mystery to find blessings, but reveals Himself eagerly and freely to us. He looks for us, seeks to be with us, hopes for us, loves us, cheers us on. He has paid a terrible, horrid price through the death of Jesus to reconcile Himself to us. Jesus’ sufferings did that for us freely, not to be confused with these sufferings that Jane is going through.
For us, this current ‘experience’ is due not to the Will of God, but more due to Adam. This creation we all walk around in is not the Creation that the Love of God started out with. It’s been stained by the independence of Adam and cursed by Adam’s deeds. It’s a fallen creation of Genesis 3 not the original of Genesis 1. It’s a world that takes from our lives rather than gives to our lives. What Jane has been going through, rather than adding to our Faith, has tried to subtract from it. We do not believe that it is from God; He tempts no one, He rebuilds and refreshes. We trust He does not diminish and damage His children’s lives. This experience is like the tide, it tries to erode and wash away the foundation of our Faith, tries to wear it away and diminish its rocky shore. God’s role in our lives is to do what He has done all along in our lives: support and encourage. The Kingdom of God acts as a structure for all our life experiences to hang on, it’s the framework of our strength. It’s much like the frame that a house is built on. We recently had a dishwasher leak and it leaked for days underneath the flooring in our house. That flood, if you will, damaged the drywall, the subfloor, it ruined the pad, molded the insulation, but it did not damage the structural studs or sheathing. We simply replaced and repaired the damage and used the strong original structure to put everything back together. In Life, when a flood comes (in this case Guillain-Barré) it rises up against our house, doing much damage sometimes, and in this specific case that Jane and I are facing, much damage has taken place. But, even in this, the structure of Faith, the joists, studs and rafters have held strong, and we have began to prepare for restoration.
For many weeks now I have watched Jane wrenched with pain and tears, unable to control that pain and defend her body, a body raped by pain. Many times I’ve seen her pray, many times I’ve witnessed her mouthing ‘nothing is certain but Christ.’ Jane did not learn to trust under these circumstances, during the pain and suffering; she learned to do that over the 40 years of experiencing the Grace of God. That knowledge came from earlier Faith, not a lesson during this terror. Prepared Faith gets her through it. A Faith exercised before the winds and storms of life threaten, a Faith built on a Rock and not sand, make everything tolerable. That knowledge provided the structure for her to withstand this flood of sickness. For us there is no hand of God here! If there are any of God’s fingerprints they can be found on her strength and confession. After all the suffering, Christ still remains.
During this I’ve seen things I never wanted to see, things I hope to never see again. I’ve witnessed things that are humiliating for her, things required by the critical nature of this syndrome, things that hurt. I’ve been broken-hearted for the injustice of it all, the contrast between what she has said and lived for 40 years and what she now faces. We’ve had everything stripped away and live down to the bare-bones existence, day in and day out in a hospital room with pulses, fevers, bed sores, breathing rates, loud machines, sleepless nights of pain, paralysis, helplessness of being given a bath more akin to a car wash, tubes- lots of tubes, bags, a breathing vent, needles, what must be hundreds of meds to treat each system as it failed with the advance of Guillain-Barré, time learning to breathe again, swallow again, walk again, write again, speak again. Jane and I have a constant Faith that has been imprinted on our hearts. Guillain–Barré has not revealed anything new about God’s Love, it has challenged it, tried to destroy it, but it has failed.
No terror, no pain has been able to wash away the tattoo placed on our hearts about the Love of God. God Loved us first, provided a way to adopt us into His Family, provided a Righteousness not of our own doing, a Holiness that is tied to His Holiness, before the foundation of the world determined to seek us out, make effort to capture us in His Great Love and preserve us by the Spirit of God. He was a Friend of Abraham and He’s our Friend as well. We are His possession. This moment is about His Faith place in us, His testimony of Comfort toward us. The God that we trust and believe is Love and rather than a God that is waiting to condemn or cast us off for any immediate opportunity, we have found a God that is eager to embrace, restore and heal.
There have been days when I thought about what it would be like to denounce all we believe and what it would be like to just ‘hang it up’. I don’t feel like I need the Gospel because either I or Jane are weak and just need that ‘perpetual crutch’ to lean on. There is nothing about Faith that is necessary for either to be stable, to be secure. Our Faith is chosen, loved, treasured not for any reason other than the work of the Spirit of God to gift it to us. I have sat at the hospital awake at 3 a.m. many nights and have been dismayed at what I saw happening. I have thought of how much our ‘normal’ is not normal any more. The person I saw just a few feet from me I did not recognize any more, pain had changed her expression. Sometimes what I saw was a very sick person praying, praising and ‘listening to the angels sing, listening to music that came from the right hand of God, music that (Jane’s words) could be turned off and on like WBVN’. I saw a sickness that distorted the calendar and the clock.
Nothing that had been secure prior to March 21st is secure today- well, except One. We have not been destroyed. And while we will not say our Faith is stronger because of this, we can say our Faith has survived the flood of a very terrible sickness. It is a Faith that can be as Paul said, the same Faith in little and in much. The structure of Faith that under girded our hearts remains intact and we hang on to the only thing that is certain: Christ!