When I initially began writing specifically about ALS back in mid-January, my intention (God willing) was to write something encouraging every day for a year. But then, when February and March and April came around, a whole lot of challenges started to erupt in my home–a Holy disruption–and no matter how much I prayed for a word from God to share here, nothing came. Instead, He launched me off on a safari of the soul–an intense, frightening, mind blowing, and spirit altering adventure. There were days I felt emotionally hung over, physically sick, and exhausted.

Throughout this transformative little soul trip, I experienced moments of guilt for neglecting my assignment from God (to write). At the time, I was unaware of what was actually happening (too much in it to perceive, to believe); I feared I was allowing myself to get distracted putting out fires, grasping at straws, cleaning up messes for which I felt responsible, and second guessing myself.

I finally heard this brief directive from the Lord: “Stop talking; just listen.”

Turns out all those pesky little fires and straws, motions, messes, and second-guesses were precisely the point.

For the past few months, my soul has been the mission field, and like any mission trip, the work is the reward. The experience feels inexplicable–too big to describe or explain. Too personal to relate to others, as though writing it down and sending it out into the world will somehow alter or destroy the significance, yet that is exactly the assignment God gave me. It won’t all come out at once: Some of it needs to be refined, turned over and examined more deeply, flushed out through prayer. But here is what I can share today:

The spouse of someone with ALS can be only so honest with others about his or her personal experience, and that’s a lonely existence, hence the need for God to sweep me away on safari so I could pour it all out to Him.

It can be difficult and frustrating to inspire a spouse with a terminal illness (no matter what the stage of progression) to dream and to learn and to grow; it is equally difficult to hear God speak into one’s own present and future–and obey–without losing perspective and feeling selfish.

It’s hard to hear someone say: “Don’t let your husband do ______! He’s going to get hurt!” knowing how angry it makes him when I offer assistance, how frustrated he gets when anyone treats him like he is weak and incapable. So while I am concerned and try to serve his needs, part of honoring him is encouraging and allowing him to be independent as long as possible, knowing that the transition into this future is a strain on the marriage relationship. I know him; the world however, does not and is often unreasonably and inappropriately judgy.

As the wife of a man with ALS, I fear my safaris, now and into the foreseeable future, will continue to be of the soul–not of the body. I believe the Lord has a plan for me, too, on this earth–one that apparently is separate from and extending potentially further into the future than the one He has for my husband or for us as a couple. I cannot think or speak about this without feeling guilty, but that is my confession. We are one, yet we are separate individuals with different stories, different beginnings, and seemingly different endings.

I in no way mean to diminish my husband’s experience or his pain, but to simply be as honest as possible about my own.

I may have neglected my writing assignment for a few weeks, but I learned that this life-journey is a strange one, with or without ALS, so if God invites you at any stage to go soul tripping with Him, by all means go! Obey! Let the Holy disrupter stir things up a bit. There will be pain and confusion, but there will also be healing and clarity.