Someone who has had a severe case of GBS most likely will a suffer severe change in personality as a result of a disruption in his or her pattern of living that may well be permanent. My wife got severe GBS a year ago last July while at our house in England. The cost of flying her back to the USA was over $40,000 alone. Luckily, our medical coverage was good, and she got the benefit from a quick diagnosis (3-4 days) and early ivig treatments.
From then on, I would say that her medical assistance ranged from well below expectations (Emory University Rehabilitation) to good (initially with local physical therapy) to below expectations (lately with local physical therapy).
The unevenness of the medical care puts a lot of stress upon someone already trying to cope with a major physical threat to one’s existence. Combine that stress with simultaneous occupational threat and stress caused by the erroding health of one’s parent. One lives in fear of what the future may bring and how it is possible to cope with such a broken world.
Few friends and associates are helpful, although I suppose they mean well. They want to know that the one who is is is getting better and better, although the actual experience of life is the opposite, at least for one beyond the age of forty. Look in the mirror; can you really say that you look better now than you looked a year ago? Or maybe five years ago? Well, it’s damned difficult to find a person asking how a post GBS person is doing who will listen when you say, “Now that you ask, not so well. She was better last month and seems to be suffering from residuals that make walking difficult, and has difficulties holding things in her hands, and may never be able to work again.”
There is a wall as tall to climb and as diffucult to circumvent as the Great Wall of China that separates the healthy from the infirm.
Typically, caregivers also find that Great Wall going up around them also. It is no longer possible to participate in many of the activities one participated in pre-GBS, and others really don’t comprehend why that is so. One gives them up willingly because the need is so great; however, one is still cursed with memories.
The solution? Short of the miraculous recovery of the ill one, the is no solution. However, it is possible to become further involved in the lives of those less fortunate than oneself and from that lose contact for a little while with your own misery. I remember once talking with Malcolm Boyd about a nearly impossible situation that I have since forgotten and asked him what I should do. His reply? “Always remember that as long as you are alive there is a good chance that you will outlive the problem.” He was right, and that advice has sustained me over the years with many other problems. Time changes all things, and what time doesn’t change, death will.