An Update as of 1/25/13

We are once again in need of prayer. Bob has experienced a setback in the past week, with a significant decline in his memory function and to some extent his cognitive processing as well. Most things seem to slip out of his memory almost immediately, so that he asks the same questions and wants help rehearsing what have been the events and activities of his day again and again. He is pleasant and happy to help with things around the house, but unloading the dishwasher sets off a fresh scavenger hunt for where things belong every morning.  It has been disconcerting and worrisome for us both.

There are two possibilities for this downturn that the doctor is exploring. Even though we are not seeing much in the way of seizure activity, it is possible that he is having seizures that are too small to be seen but that are nonetheless hurting his brain.

The second possibility is that Bob's immune system is springing back into action, still confused and thus back at attacking his brain. Because Bob does not have a confirmed diagnosis and because the research into this class of diseases is quite young, one of the ongoing questions in charting a course of treatment has been to determine how much immune suppression is necessary and for how long. What we are trying at this point is a high dose of steroids that has to be taken intraveneously. A home health care nurse came to the house yesterday to administer the steroids while I was at work and Bob was home with his dad.  The nurse tried to teach Bob how to do it himself. Although at other times, that would have been a challenge Bob would have enjoyed taking on, with his current deficits it caused a lot of worry and upset. The nurse came back today to teach me how, so I will be Bob's nurse this weekend.

We may be in for a wild ride this weekend, depending upon how Bob reacts to the steroids. We'll hold onto our hats and get through, hoping and praying that this is the answer to turning things back around. One encouraging sign was that this afternoon Bob mentioned that he thought he was feeling a little better. He noted that his memory was not appreciably better but he felt somewhat less confused and befuddled. We'll hope that this improvement continues. 

Thank you for your continued help, support, and prayers. 

-Megan

An Update as 1/20/13

The past couple of weeks have been very busy weeks as we have been putting the half of our house that was impacted by the mold remediation back together. It has been an opportunity to clean out closets, throw away things we no longer use or need, and get a fresh outlook on things. We were especially blessed in this project when our dear friend Jim Klagge came to visit. He spent hours vacuuming the mountain of books to go back into the bookshelves in Bob’s office. That was a tremendous help! Not only was everything covered in potentially moldy house dust, but the painters had had to do some wall repair, so that added a layer of plaster dust to everything besides. Bob would have been willing to help, but I really didn’t want him anywhere near that project because of my concern that there was mold spores in the dust, and that that mold was in some way a contributing factor to his illness. Without Jim’s help, I’m sure I would STILL be vacuuming and cleaning books! Instead, we’ve got things nearly settled. We’re about ready to hang the pictures back on the walls and call it done.

What has been keeping Bob busy, and pretty frustrated, is getting our all of our technological devices on speaking terms with one another. The computers won’t talk to the printers, and the phones won’t talk to the computers, and televisions won’t talk to the wireless network! Our formerly peaceful home is filled with devices giving one another the silent treatment!  It has been frustrating for Bob to try to fix all of these problems because he knows he used to know how to do it, but his attempts have only seemed to make things worse. After three days in technology purgatory, on Friday we finally called in professional help to get all that sorted out. But even this morning, Bob has been befuddled by technology challenges. It turned out that somewhere in the confusion, the mouse to Bob’s laptop got switched with another mouse so that he had a mismatched set of transmitter and mouse. We finally figured it out and he’s back in business again.

Bob’s memory continues to be a challenge. There are times when it seems to be getting better and other times it seems to be worse. The past few days it is worse. Yesterday, Bob and I spent much of the morning putting together a new bed in the guest room, and then after being out for the afternoon we finished it up in the evening. When it was all finished and the room put back together, Bob was beaming about how good the room looked. This morning when I got up I happened back into the room and called out to Bob, “This room really does look great. Thanks for your hard work on it.” Bob came to join me, and looking around said, “This really does look gorgeous, but I have no memory of working on it.” Even while working on it, Bob’s memory problems were evident. At one point Bob asked me to help him move the mattress out of the way, which we did. Then he left the room for just a minute to go get something. When he returned, he exclaimed “Oh, good, you moved the mattress. I was JUST thinking that we ought to do that!”

There is better news to report on the seizure front. We had a rough patch earlier in the month that turned out to be medication related. It was scary to be back to that place. Once we got him back on his regular routine with meds, the seizure activity quieted down. Now he has occasional small episodes when there is too much stimulation, but mostly he is getting back to his regular activities. He was pleased to have a friend pick him up and take him to his Kiwanis meeting on Wednesday.

Last weekend, we had a big adventure as Bob made a surprise appearance at a WellCoaches retreat that was being held on Captiva Island in Florida. The WellCoaches community is such an important part of his life and he was so delighted to be with all of his colleagues again. It was especially wonderful to be with our dear “daughter” Erika. And while Bob was enjoying being part of the intellectual work at the retreat, I was enjoying having my toes in the sand walking on the beach and reading a novel by the pool! It was a one day respite that really helped recharge my batteries. I am now getting back into work full swing at the university as my semester gets underway. I have a particularly busy spell coming up as we bring in candidates for the Dean’s search for which I am serving as co-chair. Bob’s dad is coming from Cleveland to help out during that time, and I am so glad for his help.

I continue to be grateful for all of you who are continuing to keep Bob in your prayers. It is wonderful to have as much of our former lives back as we have, and we are still hopeful of a full recovery. But it is clear we still have a ways to go. We’ve been told that brains take a long time to heal and to expect uneven progress. We’re having the opportunity to learn new depths of patience, bolstered by gratitude and the awareness that things could have turned out so much worse. If you’ve got a spare prayer here and there, we’d also ask for prayers for our friend Amy who is once again experiencing some mysterious health challenges.

Be well. Megan

An Update as of 1/4/13

Some 25 years ago I was in the midst of a rough patch in my life. I remember sitting in the audience of a musical program put on by the Good News Community Church Choir as they sang a song on the theme of “Leaning on the Everlasting Arms.” That message resonated deeply with me and I closed my eyes and prayed “Yes, Lord, I need to lean into your arms. I am not strong enough to get through this on my own.” No sooner had I lifted that silent prayer than I felt real, physical arms surround me and pull me over into a loving embrace. I let myself relax into that embrace, marveling at how quickly and powerfully my prayer had been answered. I did not open my eyes to see whose arms God had used to answer my prayer until the song was over. I looked up to find that it was Fannie Campbell, one of the loving matriarchs of our little church community, a woman who had a known her share of sorrow and heartache and had been strengthened by it rather than having become bitter. Many times have I revisited the memory of that prayer so beautifully and lovingly answered.

Bob and I are making the final leg of our holiday travels today, returning home after two weeks in which we have spent time with many of the people whose real, physical arms have embraced us and served as powerful expressions of God’s care for us during these past four months. Our souls have been nourished with love, laughter, and play while our bodies have been nourished with good food and rest. Revisiting places that have been important to us in Cleveland, Columbus, and Washington, DC have helped Bob to re-collect precious memories. While Bob still has quite a ways to go to having his memory fully restored, visiting the homes, churches, and restaurants that have provided the context for events that have shaped who we are was a powerful and healing experience for both Bob and me.

We now return to a home that has been undergoing a transformation while we’ve been away. A crew of painters has been busy scrubbing away the mold and mildew that had been growing unnoticed on the woodwork throughout the lower level of our house, and putting a fresh coat of paint on the part of the house where Bob’s spends much of his days. We look forward to an environment that will support continued healing and the work that both Bob and I find so meaningful. We covet your continued prayers and blessings. These have sustained us through this frightening and miraculous journey.

May we all take notice of the blessings all around us in this new year!

-Megan

An Update as of 12/22/12

Bob and Megan are now in Ohio, preparing for celebrations with his family in Cleveland and then in Columbus. Megan was quite eager to take a break from all of the work that is going on at their home, including mold removal and the repainting of entire lower level. All of the constant activity and flurry of workers is difficult for Bob's sensitive system and has been overstimulating this week, leading to an increase in seizures. It will also be a blessing for him to be removed from lure of computer technology so that he can rest, relax and rejuvenate and practice what he wrote about in his poem Deep.

 

Bbo has not lost his sense of gratitute for the gift of life and his awe for "new" discoveries. We continue to be hopeful for a full recovery of his memory as things become more conscious - such as more often remembering previous conversations or having hunches about the turns to make on a trip to the store.

 

Most of all, he continues to be overwhelmed with love for his friends and family and is in the new habit of routinely expressing it! Bob is living Bishop John Shelby Spong's motto: "Love wastefully!"

 

Bob recently discovered this picture, taken of him embraced by another special member of our family, my uncle Van. The picture is from last year's annual family gathering at a church camp in Ohio.

Along with the picture, he sent me this note, "Just noticed this picture on my computer. It doesn’t get any better than this."

Given that this picture was taken a year ago, and that we are here at this Christmas looking forward to another holiday with a living Bob, he's right - it doesn't get better than this!

With joy,

       Erika

An Update as of 12/13/12

Terrific news! Bob “graduated” from his three therapies today -- occupational therapy, physical therapy, and speech therapy! His therapists were impressed not only with the tremendous progress he has made in such a short time, but also with his motivation to push himself to keep improving. It is astonishing to watch as his brain heals and he is gradually gaining access to more and more memories.

Another exciting step along this healing journey is the assessment of his neurologist as well as the speech therapist that Bob can begin to be left on his own for short periods, meaning that he can exercise in the workout room without having to have someone with him, and that I can leave home for periods of time and he doesn’t have to come along.

One last bit of good news is that the workers in their white coveralls and masks have finished the mold remediation work in the crawl spaces under our house, next to Bob’s office, and we are both breathing a lot easier – both literally and figuratively.

We have much to celebrate as we enter this holiday season.

PS – This concluding  postscript from Bob echoes Megan’s joy and astonishment over the ways in which my brain is healing. I do a lot of sleeping these days, especially when I  challenge my brain and body hard, which is an integral part of the recovery process. If I had done more sleeping in the first place, I may have never had seizures at all (although given the mold problem, other factors may have been at play as well). One way or another, the ebb and flow of work and rest is the rhythm of life itself. Read all about it in Provisions #612 and #614, titled Get Your Rest and Vital Rhythms. Thanks for all your prayers and support.

-Megan

An Update as of 1210/12

Bob has had a really great week. His memory is improving daily and he is having more “picture” memories where he can recall actual places or events rather than just facts about those places (like the addresses of the places he has lived). He is also making gains in his perceptions of space and time. Other than two very small episodes yesterday, Bob has been seizure free for nine days now! He is very much enjoying getting back to some of the work that he enjoys, like writing Provisions. And he is back to trying to get our computers up and running properly, although he is learning that he needs to take frequent breaks.

Friday was Bob’s birthday and he felt very touched by the many expressions of love that came his way. In the evening, we ventured out to the Kiwanis Holiday party. This was a risk because we have been told to avoid the stimulation of crowds, but Bob had a wonderful time getting reconnected with his many friends in the club. They invited him to say the Invocation at the beginning of the program and he led us all in a very heartfelt prayer of gratitude. They also sang him a rousing rendition of Happy Birthday!

This afternoon, we had a very encouraging visit with Bob’s neurologist. Dr. Marsteller was very pleased with the progress Bob has made in the past month and at Bob’s motivation to push himself. He indicated that with brain injuries, making a lot of progress in the early months is an important indicator for the eventual outcome. He also noted that the brain is the slowest part of the body to heal and that continued progress can be seen for up to two years from the precipitating injury. Bob was delighted because the doctor didn’t think that he needed to be supervised quite so closely, which meant that when we got home Bob took down the sign on the door to the workout room reminding him that he should have some company when he was out there. He can now resume his early morning workouts when he is up before I am.

We also are in the midst of a huge project of mold remediation in the crawl space under our house. Our house is built into a hill and it seems that moisture has been seeping through the exposed dirt floors of the two crawl spaces, as well as condensing on the air conditioning ducts in summer, creating the conditions for mold to grow. We may never know the extent to which all of this mold was a precipitating factor in Bob’s illness, but it certainly makes sense to take care of it once we became aware of it (thanks to the prodding of Bob’s sister Laurel). Today we had four big trucks in our driveway and men wearing coveralls and face masks that made them look like astronauts who were working on cleaning out and sealing the ductwork throughout our house. Various crews will be here all week to get done what needs to be done.

So between getting Bob to five different kinds of therapies as well as doctor’s appointments, and beginning to get back to work at least a little, and keeping in touch with so many of the people we love, life is busy and rich and full. It is clear that we still have a long road ahead of us, but day by day life is inching back toward normal life. And that is a wonderful thing!

-Megan

An Update as of 12/3/12

Sometimes the vagaries of what Bob remembers and what he doesn’t makes for some funny moments.

Last night we had a stressful evening when Bob’s new computer refused to start. That put him right back into the very project that was so stressing him out at the time that he got sick –setting up three new computers. In taking apart the computer, which was challenging for him but he did it successfully, he replaced the hard drive with a second hard drive that he had been formatting back in August. Because it was formatted before Daylight Savings Time, when the computer came back online, the time was incorrect. Bob called out, “What’s that telephone number you call to find out what time it is?”

Now that’s a blast from the past!

I am pleased to report, though, that Bob is practicing what he preaches and he has been taking regular breaks from the stresses of computer set-up as he becomes aware of the need to rest, both last evening and throughout the day today. That is a terrific new skill set for him! And he has somehow remembered how to get not one but two computers up and running. Amazing, what the mind can do! 

-Megan