An Update as of 10/29/12

Bob has continued to come back more and more to himself. It was so exciting to see Bob do some original writing while editing a brochure for the Center for School Transformation yesterday afternoon. And he has been working on re-memorizing David Whyte’s poem “What to Remember on Waking.” But most spectacular of all, when I woke up this morning, Bob greeted me with the announcement that he had spent the early morning hours writing an original poem about his experience! It is thrilling to see him be creative again and to be using his special gift with words and word play. It has really brought joy to my heart.

Bob has also enjoyed getting back to some more ordinary tasks as well. Today, he carried the trash out as we left for his therapy appointments. He enjoyed the feel of his wallet in his pocket, and making a purchase at Best Buy. On the way home, we stopped for gas and after once again being astonished by the high prices, Bob managed to navigate the computerized pumps and pump the gas. As Bob has again and again said on this healing journey, “Don’t ever take normal for granted. It’s truly extraordinary to feel ordinary.”

-Megan

An Update as of 10/28/12

Bob is doing very much better this weekend after making some adjustments to his medications. On Friday evening Bob had one of his "episodes" with the alarming new element that he was experiencing double vision. We called Bryn and left her a message about this new development. She flew into action to learn more about the three anti-seizure medications that Bob is taking. She also was able to reach Dr.Kass at Baylor who has generously been consulting on Bob's case.

What we learned is that two of the three medications are supposed to be given three times a day eight hours apart, not twice a day twelve hours apart as Bob has been given. The phenobarbital, in particular, can have dangerous withdrawal symptoms, including seizures, and Bob has been experiencing several hours of withdrawal twice a day! This helps explain the early morning confusion and anxiety while he was experiencing at the rehab hospital as well as the anxiety he has been feeling in the evenings, impatiently waiting for it to be time to take his meds.

Bryn had us adjust his medication schedule to three times a day, and what a positive difference that has made! Bob has not had any more of his episodes of feeling jittery and like he was having to struggle to "keep it together." Spacing out the Keppra has also seemed to eliminate the bouts of hypomania, of over-the-top exuberance and grandiosity that he has sometimes been having.

The third medication, Vimpat, seems to be the likely culprit for the double vision, so we have begun weaning him off of that med.

I am once again so, so grateful for Bryn's smarts, persistence, and love. How could we have negotiated this treacherous journey without her? I am upset that Bob's doctor who prescribed all of these medications has not been more attuned to these issues, and just so glad we've had someone on our team to help sort this all out.

Bob is also making really outstanding progress in recovering his physical strength and balance. He is now able to move about the condo without a walker or having someone at his hip, which he is very happy about. When we go out, he uses Exerstride walking sticks that were a gift of a group of Wellcoaches students and faculty, which is very much cooler than a walker! They even got me a set as well, so we are looking forward to making these a regular part of our exercise routine.

Thank you to everyone who has been keeping Bob in your prayers. It feels like we have taken another important step forward in his healing journey.

Megan

An Update as of 10/25/12

This was another milestone day on Bob’s healing journey. Bob was discharged from the hospital and walked home under his own power, using the wheelchair as a walker (and a luggage cart!). Receiving two doses of immune suppression medication was not a pleasant experience for Bob, but the proof is in the pudding because he has been feeling so much better since having them. This has been a challenging illness to treat because we do not have a confirmed diagnosis. All of the tests for known antibodies done by the Mayo Clinic and the world expert in Spain came up negative, so Bob falls into the 30% of cases that fall outside of the known antibodies for which tests have been developed. We are therefore left with the “walks like a duck, quacks like a duck” strategy, and Bob’s good response to the immune suppression is encouraging.

This morning when I arrived at the hospital, I did not find Bob in his bed. I was a little confused and concerned at first, but I found him down in the Day Room exercising on the exercise bike! (I was also worried because he was alone and he was supposed to be supervised in case he should have a seizure -- until I remembered that the Day Room was monitored by a camera). Yesterday in therapy, Bob had been cleared to walk without a walker as long as he had someone walking with him, and he also walked up and down two flights of stairs! We celebrated by having a “date,” walking down to the hospital cafeteria for dinner.

Although Bob has begun remembering things far back in his own personal history, he struggles to remember much in the past five to ten years. In trying to piece together his personal history, he has been intrigued to have discovered his Smartphone. He has been interested to discover text message streams, and particularly to have found his Facebook account. What might you learn about your life through exploring your phone?  

Bob’s developing but impaired memory has certainly been challenging but has also provided some levity. Bob’s journal has turned out to be an important tool in keeping track of his days and activities because he often forgets what he has done soon after he finishes it. Our first morning back in the condo, his dad made breakfast for everyone and then thoroughly enjoyed taking a shower. He wrote in his journal:

Breakfast: Scrambled Eggs & Bacon

Shower: Megan & Eggs

We had another laugh when Bob was brushing his teeth in the hospital. He kept brushing for a long time, but he had mentioned how grungy his teeth felt after taking the chemotherapy, so I figured he was enjoying it. Then he started laughing. When I asked why, he said “I’ve been sitting here wondering how long until this thing would turn off, but I just realized that it is not an electric toothbrush!”

Some things are not as funny as they once were. One night in the hospital Bob decided to turn on the television to pass some time. Perusing the channel guide, he knew right away that he wanted to navigate to Comedy Central. The Daily Show was on. Bob looked at Jon Stewart and said “ I recognize the face, but who is that guy?” He watched for a few minutes,  said and “For a guy who can’t remember anything of the past five years, this really isn’t that funny” and he changed the channel.

Bob is concerned that he has had no memory of Barak Obama being elected or serving as president, although he has been interested to learn of current events through the presidential debates and political ads. He is really surprised that if Obama was responsible for taking out Osama Bin Laden, that the election would even be close. He is also so grateful that we have health insurance through this whole ordeal. He can’t imagine that having passed legislation to make this kind of insurance accessible to everyone has been construed as a political liability.

Bob starts outpatient therapy in the morning – the next new chapter in his journey of recovery.

-Megan

An Update as of 10/23/12

Due to the spells Bob was having over the weekend, Bryn recommended that he have a 24 hour EEG evaluation completed. Bob was admitted to the hospital yesterday (Monday) and began the EEG monitoring then. 

After reading the EEG results today, it was determined that Bob was indeed having seizure activity. A second round of immune suppression medications were being given to Bob via an IV this evening. These medications give him unpleasant side effects, including causing him to at times feel icy cold and at other times, over heated. Needless to say, they make Bob very uncomfortable.

Due to the seizure activity he's been having, coupled with some general anxiety, Bob has had some increased difficulty with his memory today. His conversations have frequently looped, although he does appear to be retaining more memories than he was the first time he experienced these seizures back in September.

All of this is to be expected with Bob's current state. Bryn, along with Bob's doctors, have all stated that he may need up to four doses of the immune suppression medications, so to be having a second dose this evening is not unexpected. He may remain hospitalized through the week.

Megan was given permission from the nursing staff to spend the night with Bob. This is extremely comforting to him, but also taxing on Megan, as the way Bob is handling his anxiety is through talking. If you're up late this evening and into the early morning hours, please send positive thoughts of rest and relaxation to Bob and Megan. May they both find some quiet solace in each others presence this evening.

-Michelle

An Update as of 10/21/12

Life is a wonderful, crazy, amazing journey for the healthiest of us, so I can only imagine how foreign and challenging life feels right now for Bob. Upon his release from the rehab center on Friday, Bob has repeatedly stated how "awake and alive" he feels, but also how he doesn't feel like himself. This confusing dynamic can lead to some stress and anxiety, which in turn taxes Bob's brain. When his brain becomes overly taxed, Bob appears to have tremors in his hands and difficulty breathing. He describes this feeling sometimes as "weird" and other times as being "woozy."

On Friday evening, Bob appeared to have a seizure and Megan, Laurel, and Grandpa had to have the paramedics come in an evaluate him. Luckily Bob was well-supervised when the possible seizure happened, and he was able to communicate with Megan and the paramedics within seconds of having the episode. This, along with a consultation with Byrn, gave Megan and Bob the confidence to allow Bob to remain at the condo that night and not return to the hospital setting he had so happily left earlier in the day.

Saturday was a joyful day for both Bob and Megan. The day began with Evan, Everest, and I surprising Bob by sitting in the living room of the condo when he awoke for the day. The smile on Bob's face when he saw Everest could have been seen all the way in Columbus and Chicago. He beamed and happily stated, "Good morning, Everest Gray!" Megan spent the morning at the spa with Laurel, where she had a body wrap and massage. 

While Megan was at the spa, Bob spent time playing with Everest and stretching his legs on the balcony of their condo. He claimed that the fresh air was "invigorating to his soul." As he stood on the balcony, his childhood friend, Jim turned the corner and Bob immediately shouted out, "Hey, Jim! How's it going?" While Jim was entering the building, Bob once again beamed and repeatedly told me how "incredible" it was to have confidently and quickly recognized Jim.

Throughout this entire process, Bob and Megan have continuously been blessed by gifts from friends, both big and small. Megan has repeatedly stated that she feels like this experience has been sprinkled with miracles and that everyone who has visited, has arrived just at the perfect time when they were needed. Jim's visit was no different. 

Jim brought a truly inspirational gift with him-- a 24 page, single-spaced memoir that he had written over the past month about his life with Bob. Jim had e-mailed this document to Megan before he arrived and Bob had spent much of the early hours on Saturday morning reading through it. When Jim arrived, he and Bob discussed various events they've jointly experienced. Many of the early memories were easy for Bob to recall, including the lyrics to a musical they performed in their middle school church group! When Jim would bring up more recent events, such as his daughter's wedding this summer, Bob would have a difficult time remembering the event, if he remembered any of it all. This lack of memory for more recent events was saddening to Bob, but with prompting he was typically able to use his strong deduction and reasoning skills to come to a better understanding of the events that took place.

That afternoon, Jim, Megan, Bob, Evan, Everest and I all went for a walk on UVa's campus and had lunch at a Mediterranean restaurant. Bob learned two new things at the restaurant: 1) How to stop eating when you're feeling hungry (something he's struggled with much of his life) and 2) How to stop and take a quiet moment to savor the important things in life. In an attempt to help Bob solidify his short-term memories, Evan decided to introduce the strategy of taking quiet pauses throughout the day so Bob can internalize his experiences. This strategy also has the effect of providing Bob with some quite peacefulness, which his brain is desperately in need of.

During our walk around campus, Bob had a minor spell, but was cognizant enough to warn us of how he was feeling. We rested until the spell passed and then Evan drove Bob and Megan back to the condo where Bob could rest. After a brief nap, Bob returned to quietly socializing with Jim, Megan, Evan and I. He continued to want to discuss his situation and process through what had happened to him. He frequently repeated himself, but was aware of this and many times would say, "I think I might have said this before." or "Stop me if I've already told you this." This awareness of his looping conversations is an improvement since we last saw him two weeks ago. Forward progress!

That evening, Bob had another spell after talking on the phone with his good friend, Doug. We are assuming that this spell was due to being overly excited about rediscovering his life while talking to Doug. This spell passed quickly, however, and Bob was able to remain once again at the condo.

According to both Bob and Megan, Bob slept well Saturday evening. This morning, Evan and I awoke to an email from Bob's cell phone. In the e-mail, Bob informed us how much he loved us and appreciated how we have supported Megan throughout this "crisis." He also said that he was excited to see us "whenever you come next,," despite being told multiple times yesterday that he would be seeing us again on Sunday.

Due to the number of tremors and spells Bob had Friday and Saturday, Megan scheduled a meeting with one of Bob's ICU doctor's this morning. Eva, Everest, and I met Bob and Megan at the hospital and Bob was once again shocked to see us. Again he beamed when he saw and greeted Everest. During our meeting with Bob's doctor, Bob again became anxious and needed to step away from the conversation to calm himself. Luckily Everest is a cute distraction!

This afternoon was spent quietly resting at the condo and relaxing. Bob spoke at length today about the book he plans to write about this experience and we laughed as we all brain stormed various subtitles to accompany the amazing title he's already created. As we chatted today, Bob expressed incredible gratitude towards for his friends and family for everything they've done for him. He is especially grateful to Megan and Bryn. He continues to have his great sense of humor and his ability to embarrass me.  I'll admit that I embarrass easily, but I've also told Bob that I am going to use this opportunity to teach him some manners! He chuckled at this thought.

Overall, Bob appears to be making forward progress. Evan described it to him as though each week he turned a new corner, but that he hadn't turned on big corner like he would hope. As Evan said, "Dad, you have many corners to turn, so don't get discouraged." He's been informed by Bryn that he can make a full recovery, but that this will take time. At times Bob becomes saddened by his poor short-term memory, but he is working on erasing these negative thoughts from his mind and focusing on the positive. His greatest strength is his ability to live in the moment and he is drawing great joy and hope from his daily interactions with people. It is our hope that these moments of happiness will carry him down the road of healing. 

My request to you is that you too find ways to live in the moment, like Bob, and that you find and celebrate the joy around you. This is one of the greatest lessons Bob has been teaching me and I'm proud to share that with you.

-Michelle

A Quote from Bob

While Skyping with Bob this evening, he reminded me again how happy he was to be alive. He also stated that he "knew that wasn't guaranteed for a few weeks." I informed him that when he was at his sickest, we chose to hold on to hope, as it was one of the few things that kept us all moving forward together as a family. The following was Bob's poignant reaction to that:

"Well, I felt that hope. That hope caught some wind, which blew some sails, that led the boat of life directly to me. I'm so thankful for the love and hope of my family. They kept me afloat and alive."

-Michelle

An Update as of 10/17/12

We are making big plans for Bob to spring Bob from Rehab on Friday!  Yesterday we went on an outing with Paula, our occupational therapist, to visit the condo to scope how to make it a safe place to support Bob’s further healing. Then we went out for lunch on our way back to Health South. Bob was very interested to get a glimpse of life outside the hospital. He was stunned to see that gas cost $3.59 a gallon. He thought that he remembered it being more like $2.59. He also thought that the cars on the road looked different than he had remembered. It seemed that perhaps at that moment that he was stuck in an earlier era in his mind. Nonetheless, he was really tickled to be out and really pleased that it seemed to have sparked some new memories for him.

Last evening, though, as he settled into bed Bob was reviewing the journal writing he had done through the day. He saw that we had been to the condo and that we had been out to lunch, and was sad not to be able to remember the good time we had had.

This will be a long journey, and for now, Bob’s journal is his external memory until the internal one heals. 

-Megan

An Update as of 10/14/12

Bob met us with a huge smile Saturday morning and stood up to greet us and give us a hug. It was a wonderful moment - to think that this was the same person who was in the coma just a couple of weeks ago. It was comforting to know that he truly recognized us, not by prompting, but truly by memory. Bob continued to impress us with his physical prowess as he walked on his own power behind the walker for the full length of the rehab floor. 

He was quite thankful and truly humbled by the blessing of prayer which he felt from all of you, but especially thankful for his loving wife, who had not taken a day off from his bedside in the six week plus ordeal. He also expressed recognition that he knew his memory had issues and that his short term memory was his current challenge. 

He apologized throughout the day, knowing that he might be looping in his thoughts, but also wanted to point out that he had never felt more alive. He used terms such as electrical, buzzing, reconnection, resurrection, liberation, exhuberance, and thrilled to be alive. He was astonished throughout the day as we covered various aspects of his life, and curious beyond words for us to help him fill in the gaps of his current memories of his amazing life. 

 He is quite certain that the spirit of life decided to keep him around - and has expressed the feeling that through Megan and various other energy fields he was able to be pulled back to life by a rope when he felt as if he had gone over the edge. He likened this journey to an enlightened wisdom and spiritual awakening, and was ever curious about each and every discussion that we pursued. 

 On Sunday, he continued to make progress and was able to fill in gaps of his lifes' journeys that he was not able to connect just a few days before. On both Saturday and Sunday he talked about previously remembering that he had said that he hoped that he didn't forget the previous day; but that he was currently in the state where he wasn't afraid of that anymore. He also indicated that he was previously disoriented early in the mornings when he woke up, but that he was now remembering where he was and that settled him. 

Sunday afternoon Bob was entertained with his laptop - and even ventured to remember his initial login password. He was thrilled to learn that he had just set up three new computers at the house. He started to show extreme interest in his current career paths and was again astonished to start to connect dots on Wellcoaches, LifeTrek Coaching, Center for School Transformation and "Evocative Coaching". He is keeping a detailed journal to help him remember where his previous days and thoughts have taken him. 

Bob has also started to discuss his next book -the chronicles of where he has been, where he thinks he's been and where ever his finger tips take him once he returns to the keypads which he calls home. 

He is forever grateful for his "new" chance to experience his next adventures - just as we are grateful for our chance to experience those adventures with him. He appreciates all of your expressed love, both through emails, cards and prayers. On many occasions this weekend - he reiterated his thankfullness for all of the "Love-energy" which you have all sent. 

It is our pleasure to have spent time with him this weekend and to share our experience through this update. Maura and Dave

An Update as of 10/13/12

Our big news this weekend is that on this upcoming Friday Bob will “graduate” from inpatient rehab and to return to life in the “real” world! Our plan is to stay in Charlottesville in the condominium for the first two weeks in order for Bob to continue outpatient rehab at Health South and to be near his doctors here at UVA. We then plan to make the transition back home to Williamsburg on November 3^rd.

There will certainly be challenges ahead in making these moves, but I think these are going to be really important steps in healing Bob’s memory. One of the challenges will be that Bob is still rebuilding his physical strength from his month on inactivity. He is now beginning to get around using the walker rather than the wheelchair, except for longer jaunts like our daily walk outside, which he enjoys tremendously. We have been having some lovely fall days here in Charlottesville. The bigger challenge is going to be learning live safely with Bob having such an impaired short-term memory. His sense of time and space also seem to be pretty impaired as well. We are very hopeful that all of these things will heal in time and that he can make a full recovery. But progress is likely to be incremental and take some months, so we are going to have to establish new routines and patterns of living in the meantime.

The good news is that Bob is continues to have a very positive attitude and has a strong desire to do the work needed to get better. He is accepting of the feedback that his conversation is repeating itself and he is even starting to have some awareness himself when he is saying the same things over and over again. He has begun to keep a journal where he captures his thoughts as well as his activities at several points throughout the day. That is proving to be very helpful and is giving him some perspective of the passage of time. I am guessing that this will be one of the strategies that we maintain and rely on throughout this healing process. I’m sure we will invent others as well. Michelle shared with Bob an analogy that she uses with her students, many of whom struggle with memory issues. She tells them that their brain is like a house where the electricity is not working well, so what we can do is to make sure that there are lots and lots of flashlights in the house. Those flashlights are the strategies that we can learn to use. From the outside, people are going to see lights on in the house, but only you are going to know that you are using strategies, or flashlights. (When Michelle shared this analogy with Bob, he added “Yeah, they also won’t know how many batteries I’m using up!).

Bob is also his sweet loving self. He recognizes the people he knows and loves and that is a blessing. He enjoys having visitors and talking on Skype with family members. He also enjoys looking at family photos, even though he is a little overwhelmed at remembering so little about the context of the pictures. A coaching colleague reminded Bob that he was having the opportunity to practice IAC coaching mastery #4: Processing in the Present. Somehow there have got to be some important lessons in that!

An Update as of 10/10/11

These days in rehab are very rich and full.  All I can say is, when you ask thousands of loving people to pray for a miracle, be careful what you ask for!  

On Sept 21, I posted this request: “So for those of you bold enough to pray for miracles, you can visualize an alert and ever-curious Bob, waking up interested to learn all that has transpired while he has slept.”  I can assure you, Bob is very much awake and alert (it is hard to get him to sleep!), and ever-curious!  His days are filled with a million questions as he puzzles over all that has happened and why. In fact, one of the first challenges the various therapists who work with him throughout the day faced was to get him to stop asking questions long enough to focus on whatever skill or exercise they were wanting to get him to focus on!  

Bob is making really great progress in both his physical therapy and in occupational therapy (“Does that mean you’re going to try to change my occupation?” he asks). I am astonished to recall that just a week ago today, we were thrilled when the physical therapist at the hospital got Bob up and walking with a walker about ten yards down the hall and back to bed again. And we were working to get him to sit up in a chair for two to three hours at a stretch. Today, he was up in his wheelchair the whole day without a midday rest, and he can walk three laps around the nursing station with his walker!

Bob’s memory problems are more of a challenge and these are likely to persist for some time. Bob is generally very upbeat and engaged throughout the day. He has particularly enjoyed the visitors he’s had, especially on the weekends. He received an amazing gift this weekend of an IPad from his friends Doug and Maisie that has allowed him to watch Animoto videos of family photos produced by our daughter-in-law Michelle. He is especially fond of the pictures of his new little grandson Everest Gray (he is delighted to discover that he is a grandfather, but distressed that he doesn’t remember becoming one). He has also been amazed to review the websites of LifeTrek Coaching, and the Center for School Transformation (as have some of his therapists who have checked them out!). Although Bob recognizes the people in his world and remembers names and how he is related to people, he has almost no memory of past events, and almost no short-term memory. He carries very warm, positive feelings of having been with people who have visited or who he has chatted with on Skype, but he can’t remember specifics and does not have a clear sense of time so it feels like it has all happened “today.” Each of the past five days, he has ended the day saying “THIS has been a fantastic day! THIS feels like the day when I finally woke up! I am going to be SO sad if I wake up tomorrow and don’t remember what a wonderful day this has been!”

And then at 7:00am, my telephone rings with a very worried Bob on the other end saying, “I’ve been awake for hours. I don’t know what is happening. I’ve read the signs you made a hundred times, and they are very helpful. But I want to get out of here. This isn’t fun.”

Bob has started to keep a journal, as well as a “Memory Book” given to him by the speech therapist. Writing down his questions and impressions is starting to help cut down on the repetitive looping of his thoughts. He keeps hoping that one of these mornings he is going to wake up with his memory fully restored. The doctors have suggested that it will be a much more gradual process than that. In the meantime, it has been helpful to keep a Gratitude Journal, and to capture some of the many things we have to be grateful for throughout the day. We are blessed that Bob is alive, and that he is himself with his basic sweet, inquisitive personality and sense of humor intact. The rest we will work out over time.

I have said from the start that this experience will give us the opportunity to learn new depths of faith and new depths of patience than we’ve had before. Bob has said there are gifts to be discovered here, we just haven’t found them all  just yet. 

-Megan

A Reading from Bob

An Update as of 10/6/12

Bob has settled into this new phase of his healing process at the rehab center.  This is a good place for him to be. Today he:

Went outside to get a breath of fresh air and gaze at the distant mountains.
Washed and dressed himself with only minimal assistance. 
Took some of his first bites of solid food in over a month.
Took a walk with a walker.
Walked up and down four steps.
Played a game of Uno.

Bob is still struggling to make sense of this whole experience. He is forgetful and that makes it harder for him. As difficult as it is for any of us to imagine what it would be like to wake up in a hospital bed and be told we'd been asleep for 5 weeks, I think we would at least imagine having all of our mental faculties at our disposal. Bob has his reasoning abilities and even his sense of humor, but his intermittent and unreliable memory make it hard to put the pieces together. 

When the physical therapist asked Bob at the end of his session if he had any questions, he said "Yeah, why is this so hard?"

Although he has frequently commented on how hard this experience of coming back to consciousness has been, he has also wryly noted "But it beats the alternative!" Many times today he has expressed how grateful he is to be alive, and his gratitude for everyone who has loved and cared for him through this journey.

-Megan

An Update as of 10/5/12

As much as Bob loves Megan, he might love a new lady as well – the person who gave him chocolate pudding today!

There were a few additional sweet moments today as we prepared for the transfer to the rehab hospital:

When the NP asked if he is working on a book, he said, “I’m always working on a book.”

When he arrived at the hospital rehab, he was asked to begin thinking about having goals.   The first goal he wrote is “To have goals.”

When the doctor asked him, “What does ‘Don’t cry over spilled milk’ mean?” Bob said, “Well, you shouldn’t cry when you lose something, but this is spilled milk and I’ve been crying.”

Here was some of his narrative from today:

“I need to and want to get reoriented. I guess it is a battle, but I think of it as a gift.  I could never find these words; they have been given to me. I have to go hunting for them, but now I have a field to go hunting in.  You have to claim it as a transformation. It is not something that is given to you, even though it is a gift. You have to claim it, or it doesn’t happen.

I used to talk about transformation, but didn’t realize how hard transformation is.  It is hard. In my mind, I was doing my normal routine. I’m glad I was exercising in my mind; otherwise, I’d just lay around and be a bum!

I’m sad that I put my family and friends through it. In a sense I’ve lost five weeks, but in a sense I’ve been given five weeks. Five weeks of being here unraveling what is happening. I’ve been doing that largely unconsciously, but consciously the last couple of days. I remember these people because they love me so much. I’ve had a lot of people loving on me. It doesn’t feel fast; it feels agonizingly slow.  I used to talk about transformation, but didn’t realize how hard transformation is.  It is hard.

The therapists better watch out because I’m pretty smart!  They better have good speech therapists at rehab because I have a lot to say!”

-Erika

An Additional Note from Erika

One thing I neglected to mention yesterday is perhaps the most important thing of all: LOVE.

Bob never forgets Megan and that she is his ONE TRUE LOVE. He eagerly anticipates seeing her when she has left the room and trusts her whole-heartedly when she is present.

Megan "loves wastefully" (a beautiful phrase coined by Bishop John Shelby Spong); she never waivers in her assurance, affirmation, and admiration for Bob!

They are love authentic, love-in-action, love inspiration.

In awe,
Erika

An Update as of 10/4/12

I am having the amazing honor of watching Bob come back to life. The great pleasure of this experience is seeing his personality reemerge. He is ever curious, expressing his gratitude for being alive, all the while being witty and charming.

In the mornings, after a good rest, he is better able to comprehend and hold onto the reality of his state of health. And, with prompting and coaching, he can answer basic questions such as where he lives and the names of his family members.

This morning, we had cherished conversations via Skype with Michelle (and Everest) and Bryn. As Bob’s limbic system comes back to life, he is experiencing a great deal of emotion which expresses itself tearful gratitude for all that his family (Bryn especially!) has done to save his life and sadness for the trauma that we have been through. We have, of course, assured him that what has happened was not his choice and that, because of his loving care throughout our lives, we have had the resilience to remain strong through this.

Here are a few of the beautifully coherent thoughts that Bob had this morning:

The title of today’s poem is “Shocked and Amazed.”

In that first tiny moment of coming back to life, there is a small opening into the new day that gives us a chance to reorient our lives and to recapture our memories. That is thrilling. It is a privilege that most people don’t have and I think we have to give credit to the Source, which comes from life itself.

 The response I have is total gratitude because if I had stayed unconscious forever, I would have lost out on a whole few decades of life that I am really looking forward to.

I don’t know why I chose now to become as aware as I am. Maybe it wasn’t a choice, maybe it was a gift. If it’s a gift, I just want to say thank you, because I am someone who doesn’t normally become unconscious for such a long period of time.

This is a radical, life changing experience and will produce new material. It is a radical opening into the gift of life.

When I’m conscious, I’m curious and I’ll just grow. It’s not what I wanted, but I’ll take it as a gift.

There is a lot of new material here. I think it is good.  I have the opportunity to grow in a quantum leap. It’s a huge transformational gift so I want to claim it in that way.

It is surprising to me how surprising this is to me.

As the day progresses, and he becomes more tired, his loop of repetitive questioning increases. He is curious about what happened, why the decision was made to put him in a coma, who has visited him and why this has happened.


Tomorrow, Bob moves from UVA hospital to the UVA-Health South rehabilitation hospital to begin “boot camp.” We are hopeful that the physical activity and speech therapy will support the healing of his memory. As you can imagine, Bob is also eager to get moving while we are a little overwhelmed by the pace of these transitions and his healing!

While an exhausting practice in presence and patience, being here for this reawakening of this most beloved man is one of the most joyful experiences of my life. 

With gratitude and thanksgiving,
Erika

An Update as of 10/3/12- Afternoon

Bob's theme song today has changed from "I'm confused and perplexed about why all this happened" to "I'm amazed and delighted to be alive!" This afternoon he has been saying "Hour by hour, I am more awake and aware. More and more is coming back to me! I really have a wonderful life!"

Plus, Erika Jackson is due arrive any minute. Today is a happy day!

-Megan

An Update as of 10/2/12

Yesterday, Bob “graduated” out of ICU to the regular floor. While on one level, this was a happy event because it meant that his life was not in such immediate danger, the reality of the transition was a lot less happy. The move was short in distance -- just from one unit to another that is practically right across the hall-- but the differences in organizational culture were dramatic. When we left the ICU, we left a high functioning organization clearly dedicated to patient care. Tasks were clearly structured and organized, the staff cooperated and communicated effectively, and seamlessly stepped in to assist one another or to cover for one another when things got busy. The tone was of professionalism, cooperation and caring.

My experience on our first day in the regular unit was much different. The organizational culture on this side of the hall seems to be of poor communication, conflict, and stress, and there does not seem to be the same clear focus on providing high quality patient care. We arrived on the unit about 1:45, escorted by the ICU nurses who bade us a fond farewell, however,  we were not welcomed by any person on the new unit or told who would be providing Bob’s care. At a little after 3:00, I went looking for a nurse because I wanted to leave for a few minutes to walk Grandpa to a lecture he was attending and I was concerned that with his memory problems, Bob might lay his bed down flat (He just had) or try to get up. I also really wanted to make sure that someone even knew he was there. It turned out it was shift change time, so the outgoing nurse had to be brought out of a meeting. She opened a panel at the end of the bed, pushed a button, and left with hardly a word.

The next time I saw a nurse was after 4:30. She was very nice, but seemed to know almost nothing about Bob’s situation or needs. The two-minute interruption occasioned by my request was the excuse she gave for her not having been properly briefed. She provided him with mouth care, but nothing else. In the meantime, a rash on his legs went unattended and grew to twice its size over the course of the day.

At 5:30, the nurse came back to check on what kind of dinner tray Bob wanted. She seemed surprised when she noticed the trach and asked if he was supposed be getting tube feedings. When I confirmed that he was, she went and got him restarted in feeding after a nearly four hour delay. When I told her that I would like to get some sense of what the goals were for this phase of Bob’s recovery, she looked bewildered by my question and said I would have to talk to the doctor when they did rounds at some non-specific time in the morning. I didn’t see that nurse again.

I knew there was another shift change at 7:30, so I wanted to stay until Bob got settled in with the night nurse. We waited and waited and at 9:30 I finally called for the nurse. She came in harried and rushed and said that she had been busy with other patients and that she’d done nothing but put out fires since she’d arrived. I asked if she would at least turn Bob. He was supposed be getting turned every two hours and he had not been turned since he arrived (except for the moving around I’d been able to get him to do). She, too, seemed to know almost nothing about Bob and his care. She was not sure if he had a pacemaker or not. She also asked me if he was supposed to get water with his tube feedings.  I said that I thought he was but I wasn’t sure. She said she had no orders for Bob’s tube feedings, and that the last nurse had just started on the basis of information from the ICU nurses. She also mentioned that the computer system was down so she could not get access to information about Bob’s care.

Things were not much better with the nurse’s assistant. Bob made a joke when she said she was there to check his vital signs. He said “Oh, I have a lot of vitality, so you should find plenty!”, but she didn’t even smile.

I made Bob as comfortable as I could and I left about 10 because I was tired and very hungry. He must have seen my concern because his parting words were “don’t worry about me.” The nurse suggested that I could call back to check on him. So at 11:00 I called but was put on hold until 11:20. When the nurse came on the line, she explained that she had been kept very busy with Bob’s roommate and that this man was being moved out (I had heard him starting to become very belligerent before I left, which was also upsetting.). She told me she was just about to get ready to go give Bob his medications that had been due at 9:00pm.

I have tossed and turned all night and it has been hard to sleep. I can see that I am going to have to become even more active and assertive in providing for Bob’s care. There does not to be nearly the same concern on this unit about keeping the triple enemies of infection, clots, and bed sores at bay. I have several friends and family members coming to visit in the next few days, and I will be very glad to have them here.

The transition doctor I met with in the morning to plan for Bob’s eventual move to a rehab facility also mentioned, almost as an aside, that Bob may still have a trach and tube feed when he goes home, which also has me a little freaked out (“Oh, nothing to it”, says she). But I can’t even think that far down the road.

I can see that the next phases of Bob’s healing process are going to require a very different kind of energy from me. Hopefully, we will have a better day on the new unit. My concern is that the problems we had are not the fault of any of the harried or stressed out nurses we encountered, but are more systemic and therefore will be much more difficult to solve.

An Update as of 10/2/12

What would you want to know if you woke up in a hospital bed and found that you’d been asleep for a month?. Here’s some of what Bob has had to say:

I feel like this is my waking up day. I feel like I am waking up after a long sleep.

What happened? Why am I here?

Where is Charlottesville?

Where do Evan and Michelle live?(One time he even asked Evan, "Are you the President?")

Where do Bryn and Andres live? (sometimes when told “Las Vegas”, he wants to know “Are they high rollers?”)

Have you been here the while time? Thank you for being here. Were you here this morning? I have no memory of that.

This must have been scary for you. I’m so sorry for that. This must have been scary for our children.

I feel like a lot of people have been here to visit me today. (He seems to be blurring several days together, but also Skype seems to give his the feeling that he has been with people, which is really a wonderful blessing of technology!).

Bob’s memory is impaired and is likely to be for some time because that is the part of Bob’s brain that has been inflamed. So the conversations tend to loop around and repeat. The good thing is I can tell him the same silly jokes and still get a laugh, like that the part of his brain that is inflamed is the hippocampus --where all the hippopotami go to school, or that they have his breakfast, lunch, and dinner on direct deposit, but not me so I need to duck out to the cafeteria to get something to eat.

One of the doctors stopped by to give Bob what must be a standard talk about how being frustrated was a natural part of this healing process, but to try not to get too frustrated because it can lead to getting discouraged and not participating as actively in the healing process. This doctor has been a wonderful caring presence during these past three weeks while we’ve been at UVA, but he’s not had a chance to get to know Bob awake. Because at least so far, Bob has not expressed any frustration. Instead, in true Ben Zander fashion, he keeps saying “This is fascinating! I wonder why this happened? This will certainly give me a lot to reflect on for quite some time.”  And once he said, “I wonder what the etiology of this is?”

He also said “I had a dream that I rented a car. I didn’t rent a car did I?” And later in the evening when he was tired from a long day and a bit feverish from having had a dose of strong immune suppression medicine, “I feel like I’m in the middle of a long nightmare.”

They’ve told us that certain kinds of memory will be easier to retrieve than others. Bob seems to have a better memory for people than for events, and especially when he see faces or pictures. He has said to several of the nurses, “Your face seems familiar. I feel like this place is a community. We’ve lived in community before.”

That community of people ministering to Bob’s physical needs and tending so diligently to his well being seems about to change. We’ve been told that that he is doing well enough that he is likely to “graduate” out of intensive care and onto the floor today or tomorrow! This is very, very good news, but also a little bittersweet. How can we ever thank this skillful and hardworking team of people who have saved Bob’s life, and given him the opportunity to extend his trek of exploration and service?

An Update as of 10/1/12

Today was a busy day full of happiness and joy. Bob remained seizure-free and was communicating with us throughout the day. I'm taking some time for myself this evening to catch up on some much needed sleep, but will be back in tomorrow with a more thorough update. 

Thank you again for your continued prayers and support. Bob has continuously stated that he feels supported by a community of people. You all play an integral part in his healing community.

-Megan