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Sunday, May 31

Today started out not so well, with a prolonged coughing seige that was finally alleviated with a nebulizer treatment (“thank god for the nebulizer,” Bob said). After that, things were pretty much on the
upward curve.

When Susie arrived this afternoon with a bagfull of clean clothes, Bob donned a t-shirt and shorts immediately – as far as he could without assistance. While he & I chatted, waiting for the aide to arrive to
help him dress the rest of the way and get into his wheelchair, I heard what sounded like a little rock concert down the hall. But by the time I got to the dining room to check it out, it was coming to a
close. Phooey! How could they not include Bob? Oh well, they don’t know how much music – this music – means to him. But what to do now? I asked the musician, a one-man-band playing golden oldies, if he’d mind staying a little longer to play one last song for Bob. It’s his music, I told him, and music means the world to him. “Twist my arm,” he said with a smile, as he handed me a playlist for Bob to choose from.

The dressing and transferring took awhile, followed by the taking of vital signs. I was afraid the musician would give up on us, but he was waiting when we arrived. “I’m Bob,” Bob told him. “I’m Jeff,” the
musician said. It had only taken a second for Bob to select “Lean on Me,” by Bill Withers, and he joined in singing with the opening words. Jeff said, “Yeah! Sing along with me!” So we both sang melody and harmony through the whole thing, Bob taking half of the call and response at the end of the song. An old lady in the room sang, too, and smiled encouragingly at Bob throughout. When the song was done,
Bob said, “I flew through the air, and I survived! This is a great song for a survivor!” Many thanks all around, and “God bless you” from Bob to Jeff.

Outside on a second blue day in a row (unusual this rainy spring), Bob said, “I flew through the air, and I survived. This is my new story.” And so it is.

Saturday, May 30

It’s been an up and down week, a week of on-the-one-hands and on-the-other-hands.
On the one hand, for instance, Bob passed his swallowing test Tuesday and can now eat regular food and drink clear, unthickened liquids. He reports a new-found love of apple juice, applesauce and 2% milk. Today he ate a few french fries.

But on the other hand, Bob’s being bounced out of the rehab hospital he’s been in for about a week – an intensive program which turns out to be inappropriate for him at this point. At our progress meeting
with his rehab team on Thursday, his various therapists gently but frankly used phrases like “impulsive,” “lack of safety awareness,” and “poor planning skills.” Not much progress, not making progress, no
progress, one after the other reported. The fact that he can’t put any weight on his legs yet makes everything too hard. They all agreed that a transfer for now from “acute rehab,” which this is, to “sub-acute
rehab,” i.e. a nursing home (where he’d get less intense rehab and, we’d hope, more social and recreational opportunities) is called for. And equally significant, Blue Cross requires “measurable progress” in
order to keep paying for his care. So it’s goodbye for now to Shady Grove, at least till Bob’s legs have healed enough to support him. His rehab social worker here is coordinating with two or three possible nursing homes, and we’re hoping that one of them will be both good and willing to take him. We’ll find out next week.
On the one hand, Bob is still extremely upset, feeling “like a caged animal” in his “boondoggle of a bed,” enclosed as it is with a zippered tent to keep him from falling or climbing out and injuring those legs//
But on the other hand, his helpers have made sure to keep his phone inside the tent, and he’s called several times with greetings, weather bulletins and requests for clean clothes.
On the one hand, Bob’s been very angry and sad this week. He’s cried during all our visits, an hour or more at a stretch, as we sit with him holding his hand, wracking our brains for an approach (empathic?
philosophical? breezy? distracting? humorous? silent?) that’ll help ease his mood or lift his spirits. Mostly to no avail. “I want to go home!” has been his refrain. Home not being just “home,” of course, but “before.” I want to go back to before this all happened. (And who wouldn’t? How could he not feel that way?) And don’t give me any of your happy talk.

But on the other hand, there was today. Bob called us this morning, and Susie and Melanie went over to see him this afternoon. Bob was watching TV when we got there, but he turned if off as soon as we
walked in. He greeted us enthusiastically, and, we talked as we waited together for the aides to take him out of bed and put him into his wheelchair, asking about his accident.
“You don’t remember?” I asked. “No,” he said. So I told him what he’d told me about it when he was still in the ICU. “You told me that all you could see was the gas station and the trees,” I told him. “That
sounds like you were flying through the air.”
“I flew through the air,” he said, with wonder and awe.
He thought quietly for a minute after that. “You know the song Both Sides Now?” he asked me. Sure. “Well,” he said, “it’s like I’ve looked at life from both sides now.” He paused. “From win and lose to hit and
run. It’s life’s illusions I recall. I really don’t remember much at all.” (Those of you who know the song with easily see where his words converged and diverged from the actual lyrics.)
At that point, the aides arrived to transfer him to his wheelchair. Melanie and I went into the hall to wait for him. “I flew through the air,” we could hear him telling them over and over. We wheeled him out into the cloudless blue afternoon, taking him the full circuit around the hospital building, his first “walk” outside since April 15. As he rode, he reflected more about the morning of his
accident. “It was dark and raining,” he said. “Otherwise it would never have happened.”
Afterwards, sitting outside the hospital entrance and chatting together, Bob got suddenly quiet. “I’m sorry,” he said, “I just got sad. I was thinking about how I missed the Springsteen concert.” And he started to cry. “I know, Bob,” I said, “that’s why David got in touch with Clarence Clemons.” He kept crying. “This won’t be our last chance,” I said. “Let’s think about next year.” He kept crying. “Well, let’s go upstairs and have a concert ourselves,” I said, remembering the keyboard in the rec therapy room. “Okay,” he said.
Up we went. Melanie and I found the keyboard and power cord, moved a table and pushed Bob in. He pressed the on button. “This is a song Michael McDonald did when he was with Joe Walsh and the Doobie Brothers,” he announced, “Takin’ it to the Streets.” He segued from that to another Doobie hit, “Listen to the Music,” and from there into “Levon,” by Elton John and then to “You May Be Right I May Be Crazy,” by Billy Joel, winding up with “New York State of Mind.” We clapped and woo-wooed after each selection. “New York State of Mind – that’s a great one,” I said when he finished it. “No Billy Joel medley would be complete without it,” he answered. And then he pressed the off button and looked down at the keys. “I’m tired now,” he said.
It was supper time anyway. So we put back the board and the cord and the table and wheeled him into the dining room. “I think this is where you need to be now,” I said. And while, on the one hand, it was time for us to leave, on the other hand, Bob said, “I think it is,” and kissed us goodbye.

Clarence Clemons

Today’s update is from Bob’s sister, Susie:

Bob was moved from the ICU to Shady Grove Adventist Rehabilitation Hospital in Rockville on Tuesday. This is an excellent rehab facility, located, thankfully, less than 10 minutes from our neighborhood. Mornings are devoted to physical and occupational therapy, and meals are served in a large, light-filled dining room. Each patient has an entire care team, headed by a case manager, with whom Barbara has met. The general atmosphere is focused and lively, with bustling activity and a great diversity of patient needs and abilities. The goal is to guide patients to independence as quickly as possible, and stays are usually between a few days to a few weeks.

The initial transfer was confusing to Bob, and the first day he was quite disoriented and angry. He seemed to have thought that when he left the ICU, he’d somehow be transported magically back “home,” where everything would be to the way it was, and so the adjustment to reality was rough. The first night, he tried to climb out of his bed; thankfully, he was discovered before he made it to the floor. To keep him safe without restraints, the staff installed a kind of tent-like structure with mesh sides that zip shut over his bed. Needless to say, Bob was not pleased about that. Grrrr.

In spite of all this, his P.T. sessions have gone pretty well. Erica, his physical therapist, gives him generous encouragement, and Bob’s responded by working hard with her. He’s also got a speech therapist, who is working with him on swallowing, which has been a real problem since the ventilator was removed a few weeks ago. She’s helped him to be able to begin eating again, and his meals are served at a special table in the dining room for people with swallowing issues. He still has the PEG in his stomach for supplementary nutrition, but this is definitely a step in the right direction.

We’ve all talked with Bob about his issues with his “tent,” and he’s pretty well accepted that it’s not there to punish him, but to keep him safe and make sure his legs can heal. He’s even discussed it with his nurses and promised that he won’t “try anything stupid” if they leave the sides open, which they do as much as possible, especially when he has visitors…

…which he did on Friday – his 52nd birthday! The staff began his day by bringing him a bouquet of balloons, which they tied to his bed. In the afternoon, Barbara, Susie & George arrived with handmade cards from Kevin, Melanie & Jeremy, along with a framed picture and bio of Bob, written by Walt, to hang on his wall – to introduce his caregivers to the “real Bob”. When we gave it to him, he held it in his hands and read every word before looking up with a smile and pronouncing, “That’s the real me!”

The best birthday gift of all was a phone call that came in at 4:40: “Hello? This is Clarence Clemons. I’m calling to wish Bob a happy birthday.” Yes, the Big Man, himself. Several months ago, Bob had bought a ticket to the Bruce Springsteen concert here in D.C. that took place this past week, as a birthday present to himself. After the accident, it was clear that there was no way he’d be able to make it to the concert, so his brother David, who’s interviewed Clarence a number of times, started the process of getting in touch with his “people,” to see if they could make something happen in time for Bob’s b-day. And as we all know, once David decides to get something done, it does get done! He told us that when Johnny Green, Clarence’s rep, reached him, the Big Man thanked him for the opportunity to call Bob. And he placed the call himself, no intermediaries. Do we need to tell you how happy Bob was? I don’t think so. Big, big grin as they talked, telling each other they were each their guiding light, with “God bless”es all around.

“I’ll be checking back with him,” Clarence said as he hung up. So something magical did happen after all – in spite of the tent, the still-broken legs, and the long, uncertain road ahead. On Saturday, Barbara, Walt, Susie & George had supper with Bob in his dining room, and Sunday Mimi & company came down from Phillie to see him. Barbara has told Bob’s social worker about Bob’s piano playing, so we’re hoping that this weekend’s rec therapy will include a visit to the keyboard. Things are changing every day, but that’s the news as of this moment. And now, on to tomorrow.

From Barbara:

It’s four weeks since Bob was taken to Suburban Hospital, and today, he made a big step forward – he felt, for the first time, that he could really recover. For the past week or so his mood has been sad and frustrated, mixed with great anxiety (when he wasn’t almost totally subdued by medications). At the same time,  his body and mind have been healing steadily, and his greater awareness has made him more and more upset about being in the hospital. We tried to comfort him as best we could, letting him know we understood how he felt. Today, when I came in to his room, he was as distressed as ever, insisting that he wanted to “get out” and NOW. I know at that moment he felt betrayed by my inability to whisk him right out the door, into the car and back to his apartment. It took a while for him to calm down and later, almost miraculously, his mood began to change. He’d closed his eyes for a while, and I was sitting near his bed, when he turned his head toward me and began to talk – very very slowly and softly. Some of his words were almost inaudible, and I had to lean close to hear.

“I can’t believe I did that,” he said. “But it happens.” I realized he was talking about the accident, something he has never said anything about, never wanted to hear about. We didn’t know if he remembered it. Then, he said, “I feel very fortunate that I didn’t get into a more horrendous accident.”

He cried hard, and then, “I’m sorry but this is the only way I can express myself.” And, a few minutes later, “I feel that I’m going to get my whole life back together again.”


And more news: Dr. Westerband, the wonderful surgeon in charge of his care, came to Bob’s room today to talk about next steps. He is very happy about Bob’s progress – clinically, he is 100% better than the day he first saw him, and he is ready for a new stage, not quite a rehab facility because of his extreme weakness, need for further medical care, and the fact that he can’t put weight on his legs for another 6-8 weeks. What he is recommending is a nursing facility that will give him appropriate care along with some physical therapy, occupational therapy and other help. This is planned as a step toward actual rehab.  We are waiting to see what help Bob’s health insurance can provide, and then to visit various recommended places to see what would be most appropriate for him.

There’s a long road still ahead, but Bob can do it!  Especially with all of you behind him – his extended family – whose beautiful words of encouragement come every day. Thanks, thanks, thanks.

Like all recoveries, Bob’s has its ebb and flow, and right now is a fairly tough time for him. The protracted stay in the ICU – locked into bed, with every kind of tube inserted in his body – draws on all his resources and strength. All of your loving support and prayers are adding to that strength, we know. And, of course, the wonderful work of the nurses and doctors at the hospital. Still, the trauma to his entire being is deep – and fear, depression and great agitation are part of the story, a very difficult part for him. One added difficulty is his inability to control his swallowing, despite the early optimistic report about eating. Aspiration is a genuine danger (it happened once) and he is again being fed intravenously. We hope with all our hearts that there will be a new turn toward greater normalcy soon, and thank you again and again for your visits and messages. Keep them coming!!