2016-02-16 - GBS Devotional ~ True Friends
For the last three months, my husband Richard (who is also a CF writer) has been dealing with a serious neurological disorder called Guillain-Barre Syndrome (GBS), also known as Landry's Paralysis, for that is what it does, paralyzes the patient - quickly and severely. Don't feel alone if you aren't familiar with it; it's pretty rare. In fact, only one in 100,000 people get it. I kidded Richard that he would have to get something rare. ; ) If you want to read a little bit about it, here is a helpful and trustworthy link:
The good news is twofold: Unlike some of its "sister" illnesses, most patients do survive GBS and recover well from it. Also our Physical Therapist and Neurologist have declared him on track, and even ahead of many patients at this point. The bad news is that it's a very slow process, taking from several months (a small percentage) to 1-3 years (more often) for full recovery, and the body has to relearn some of the basic functions that many of us take for granted.
As we continue this journey, occasionally I will be sharing some of our experiences.
This has been a very stressful and challenging experience for both of us - me as his wife and his primary and basically only caregiver. We have friends willing to help, but some of the aspects are so personal that for his dignity, he prefers that I do it, and I understand. GBS turns your life upside down, as one day you are perfectly normal with no symptoms, and the very next, you are paralyzed and incapacitated from your normal life, and often hospitalized for a long period. For awhile, Richard couldn't do anything at all by himself. Thankfully he now can feed himself - but still is dependent for everything else, can't walk or stand, can travel only via ambulance, and still has numb hands and feet.
It would be nice to say that during this most difficult time of our lives, God made everything else go smoothly. It would be nice, but it hasn't been that way.
The first week of Richard's hospitalization, an alarm malfunction in my car left me trapped inside it, with alarms blaring, inside a hospital parking deck while Richard awaited me in the neuro unit. I had no way of explaining to people outside, yes this is my car and I'm stuck, please help me. I knew he needed me, and this was a traumatizing experience, but I finally figured out that if I took my keys back out of my purse and started the car, it would disrupt the alarm system, and that did take care of it (though this was the fourth incident).
Then my car locks weren't working normally, every night on the way home from the hospital, for over a month I was forced to drive down dark, isolated highways by myself, without being able to lock my doors. To say it was stressful would be an understatement. It would be nice to say that He made the door locks work - but he didn't. In fact, it seems that most every day, something would go awry, to make things even more difficult.
I don't know the reasons for this illness or these constant everyday problems, which seem insignificant on the surface, but wear down the spirit when they continue every day. I don't even know if there is a "reason" per se. I've always believed in Romans 8:28, but people who try to find a "purpose" in your suffering, when you are still immersed in the crisis - those aren't true friends. They are people who may be trying to assure themselves that this won't happen to them, certainly, because they don't need the refining or whatever. They may be afraid their faith would be shaken if they let themselves see that actually in this world, truly good people are not always treated fairly, no matter if they have lived their entire life "doing the right thing." As a book once said, bad things do happen to good people. We all would do well to remember this.
I am thankful that I've always known instinctively, and it was reinforced through my Victim Advocacy Training, that it is not always healing or encouraging or helpful, to instruct people about the reasons you think they might be suffering. Remember the story of Job? Some of his so-called friends were so smug, so sure they knew the reason for his serious trials, but guess what. They were wrong. His true friends were those who simply sat on the ash heap with him.
Job 2: (NIV) 1 Eliphaz from Teman, Bildad from Shuah, and Zophar from Naamah[d] were three of Job’s friends, and they heard about his troubles. So they agreed to visit Job and comfort him. 12 When they came near enough to see Job, they could hardly recognize him. And in their great sorrow, they tore their clothes, then sprinkled dust on their heads and cried bitterly. 13 For seven days and nights, they sat silently on the ground beside him, because they realized what terrible pain he was in.
Read that last verse again. They didn't tell him their opinion on why he was suffering or what he should do (though unfortunately, his wife did). "They sat silently on the ground beside him, because they realized what terrible pain he was in." Powerful words. That is not behavior that is normally in our comfort zones.
When someone we know is going through a painful situation, it is natural that we want to say something to make things better. But sometimes there simply isn't anything to say. It's not necessary to say anything. In fact, sometimes it's best not to say anything, and very often the most important thing we can do for someone in such a situation is simply to quietly be with them. It's been called the ministry of presence. We are blessed with some local friends like that, who truly understand that sometimes there is simply no way to explain why something happened, and that it is not edifying to attempt to do so. They understand that in the end, it really doesn't matter. What matters is what we have before us, and getting through it.
True friends are simply with the person who is hurting, Sometimes they are found doing something practical like mowing a lawn - and sometimes they are simply sitting with them.
Please also be careful about saying things like "I'm excited to see what God will teach you through this, or what God will do for you" etc. Fortunately, Richard and I haven't often heard these words often during these three months, but I have heard them uttered to others, in badly timed and inconsiderate ways. The words are well-meant, but can be dismissive of the difficulty of the situation, and the pain being experienced, and sometimes actually make things worse. When your world has been turned upside-down, your head is spinning, you are worn out and just trying to get everything done - it isn't always helpful to be treated as if you should be looking for lessons. God may very well teach the suffering people something. But it's not always edifying to say such things, especially early in a crisis. So heed the Spirit's leading on words and timing.
If you want to be a true friend to someone in a crisis, remember Job's friends. A genuine friend is not presumptuous or judgemental, and doesn't push their own agenda. A real friend is most interested in just walking through the experience with the person, being the ears, eyes and heart of Jesus for that person.
We'll share more later. Next time, I'll share some things for which we are thankful in this situation. Stay tuned, and thank you for the prayers, and I especially appreciate the recent friendship that God has brought my way via a mail mishap.
Janice P. Moser
All scripture references are from the New American Standard Bible (NASB) unless otherwise noted.