Progress

It has been a long time since I’ve written anything here, but now the occasion seems to require it. But first, some background information. My wife, Fran, became ill with GBS on July 3, 2006–the day that changed our lives forever. She was on a trip to our house in Dorchester, Dorset (England), and I was back here in Carrollton, Ga. looking after our cats, taking care of our house here, and contemplating being in another play, this time in a nearby community. The local hospital was about a block and a half away, the paramedics were quick in arriving, and she got a preliminary diagnosis that ended up being correct in slightly over 24 hrs.

The hospital ended up being very fine in all respects: excellent doctors, a caring staff, etc. However, the times ahead were very difficult. She became paralyzed in all four limbs, speech became incoherent, etc. Doctors had no idea when she might get well enough to travel back to the US. I had previous experience working in hospitals as an orderly, ward secretary, expediter in a purchasing department, and a unit clerk, so I knew something about how to get things done…as far as that goes, and not very far with GBS, since one’s progress with that illness is so unpredictable. Luckily, I did guess correctly when she could return by medical jet, arranged the details, and got her to Emory University in Atlanta on Labor Day weekend.

For us, Emory University was a real bust–no doctor who really knew much about GBS, substandard physical therapy, and patient care that rated a low “F”.

Back in Carrollton, Fran received physical therapy at a better than average facility, but again no local physician who knew anything about treating GBS patients. Basically, the care that she got from physicians amounted to renewing medication for pain that the doctor in Atlanta had written (neurontin 3600 mg.) However, Fran found it little help from pain, detested the drowsiness it caused, and ended up just bearing the pain as best she could.

It has been over two years now, and I must say that the best advice I have gotten came from a nurse in Dorchester who said that her recovery was unpredictable but would probably take three years or longer. The guru doctor in Atlanta, on the other hand, said that her major recovery would take place during the first six months and that after that it would be much slower and mostly refinement of the recovery she had already made. Also, that she might very well never walk again.

Yes, two years, and only those who have lived through times like these can understand the pain of them. Improvement has come slowly, as slowly as the healing of nerve tissue. . .what is it–one millimeter per month? Even then, recovery is never complete.

However, this past month Fran had progressed enough that she could travel back to Dorchester on her own, since I had to stay here to take care of our many cats–far more in number than you would think, though all are very sweet and well looked after. Fran is, by the way, an English professor, and was travelling there for an international conference of the Thomas Hardy Society, Ltd. that takes place there every four years. She had been asked to deliver one of the papers (35 minutes), a task that proved very difficult, since GBS had skewed the alignment of her fingers and made writing difficult. Nevertheless, she was able to write and deliver the paper as planned.

A few days after the conference, she travelled to Stratford upon Avon to visit one of our old friends (she and her husband, now dead, used to maintain an exotic animal shelter that is now kept by her son near Birmingham and along on of the canals there. Fran wanted not only to see her, but to find out whether she could complete a walk along the canals like she used to do prior to GBS–and yesterday did manage to complete a walk of 23 miles.

I am writing now to tell you this because I cannot find words to express what this means to me. Some of you may know. In so many ways, recovery is never complete; one can never recover the loss of joy during those long years. What I do know is that the ground that we now stand on has been a blessing to reach. What lies ahead, as always, is for the moment unforseeable.

Don (husband and caregiver)