Journal of Paul’s Story By Dona Sauerburger -- 2018
WELCOME to our CaringBridge Journal, which captures our adventures as we are plunged into the strange and mysterious world of brain injury!
You can join Paul, his wife Jomania, and his parents Fred and me as we learn about, deal with, and triumph over situations and events that I couldn't have imagined a year ago, requiring courage and determination.
It all started
Friday afternoon, March 23, when my son Paul was intentionally run over and dragged along the street in front of a Baltimore courthouse by a man who was disgruntled and angry at Paul about their court case.
He suffered brain injury, multiple skull fractures, a broken leg and ribs, and damage to his liver -- it took about 20 minutes to lift the van off of him and rush him to the University of Maryland Shock Trauma in Baltimore.
The story is in the Baltimore Sun (the report of his injuries is not accurate but the rest is).
I'm so very, very grateful that we were helped along with incredible insights and inspiration from our "brain whisperer," Dr. Cyndy Greenacre -- I don't know how families can get through this without someone like her!
I hope that sharing these insights and our experiences may help others going through similar situations.
We were blessed with support and love from many people, and we couldn't have done it without CaringBridge enabling us to keep in touch and update them with these Journal entries.
If you would like to donate to help other families get through their crises, you can use the "Donate to CaringBridge" link above. Thanks -- and enjoy!
Wednesday, March 28, 2018
Thank you for checking in! Paul continues to be sedated to prevent pressure from building up in his brain, and has a "brain drain" inserted (their words, not mine!) but yesterday they removed his breathing tube (hurray!) and today the brain drain was clamped to see if he could maintain acceptable pressure without it (so far, so good!) and if so, tomorrow, they will remove the drain and then perhaps then . . .
Well yeah, that's the thing. We don't know what to expect, or even when we'll know. Sometimes it's hard to be optimistic, but it’s been only 5 days since he was mangled and already he's doing things that the nurses say they don't see in some people for weeks. So I know I have to be patient, and there's a lot that is encouraging.
Pictures to the right show Paul on his second day in Shock Trauma, with his wife Jomania standing beside him.
Thursday, March 29, 2018 -- Progress!
Paul seems to be progressing quickly!
Yesterday the "brain drain" was removed because the pressure in his head is back to normal, although we were cautioned that if he gets excited or agitated, it may increase the pressure again.
So I started making up soothing lullabies to sing to him, like, "Paul is sleeping to heal ... healing and strong ... " etc.
And when we saw him, even though it had been only 6 days since he was injured, he was already opening his eyes and looking around, mumbling to the nurses that "My F***ing ear hurts!" and at one point they found him on his hands and knees in the bed, in spite of his wrists being restrained and still under sedation -- that's my boy!
In case you're wondering, the bone that was broken in his leg is not weight-bearing so he can maneuver it.
At first we were very discouraged because even though he was finally awake, he was very confused and agitated, not seeming to know who we are or what's going on, looking at us as if he's listening and understands and then we realize he's not.
But then I talked with my friend, Dr. Cyndy Greenacre, an orientation and mobility specialist who works with people with brain injury, and she said that's a normal stage of development as his brain recovers from the traumatic injury.
WHEW! I sobbed when I realized that -- I seem to do a lot of crying lately, so it was nice to cry tears of joy!
So we are very encouraged at how much he has progressed, although we realize that he may take many steps backward before he's done. We look forward to seeing him again tonight and learn about his new adventures and see what progress he's made!
Saturday, March 31, 2018 -- I’ve made progress . . .
Paul has been essentially the same since 3 days ago, when I wrote the last Journal – agitated, looking around randomly without seeming to realize we’re there, confused and mumbling incoherently, often looking frightened.
After several days of this, we knew what to expect when we went in, but I was surprised that I had made so much progress so quickly. I was able to look at him without envisioning the man he was just last week and crying throughout the visit, asking "WHY!?!????"
I’m sure every parent, spouse and child of injured people asks the same thing, regardless of how it happened, but this just seems so utterly freaking USELESS – the reason he is like this is just so an angry guy could make a point.
But today I could look at Paul, see him as he is and be with him in the moment without crying and thinking how unfair and horrible this is.
Anyway, even though things seemed dismal, something happened that gave us hope again. I'll explain . . .
He's aware we're there! When we arrived, the nurse said he was a lot more agitated today than yesterday, but when we went in and greeted him, he wasn't nearly as agitated as he was the past several days.
For several hours we assured him that he was safe, patted and soothed him, and sang those made-up healing lullabies, and we wondered what the heck the nurse was talking about when she said he was agitated today.
And then came the revelation. The nurse said he always is calmer when we are there.
OMG. I’m crying now as I’m telling this – it means he apparently notices we’re there, he’s reacting to us even though we can’t detect it. OMG OMG! So there’s someone still in there, waiting to come out.
And indeed there have been fleeting glimmers of awareness, which our little handout says is normal for this stage of recovery.
Yesterday when George (Paul’s brother-in-law) came to visit, he greeted Paul warmly. Paul actually turned to look at him and said, "George! George!"
So I’ve moved past the feelings of despair and started to notice every little morsel of progress and realize that it will go slowly/slowly, up and down, forward and back, and I must be patient and live in the moment.
But it still freaking SUCKS! And as hard as it is for Fred and me, we have each other at the end of the day, so it's that much harder for Jomania, Paul's wife.
Taking it bravely? My cousin Eileen wrote, "You are one of the most courageous people I know, and you and Fred together are a powerful team. Paul and Jomania, and all the rest of your family are upheld and surrounded by the prayers and love from many, many people."
Thank you so much, Eilene -- coming from you, who faced your hardships so bravely, that means a lot!
But I certainly don't feel brave -- I was cursing and stomping this morning getting ready to go out, yelling "F-- YOU!" to the robocalls, and then cried the whole way to picking up Jomania. But after today's visit and seeing Paul's progress, i felt a huge heavy burden lifting off my chest.
I know other people have it much worse -- a young man in the ICU was shot in the head for no reason while working at a store two days before Paul was hit and is just now starting to open his eyes, his parents and sister and family are there every day, and one guy never moves and never has any visitors -- and many other people have to go through this alone, whereas I'm so grateful to have Fred and Jomania and our family and friends like you. It's still just really hard to bear sometimes, but the support really makes a HUGE difference. So, thank you.
Monday, April 2, 2018 -- Good news!
When Fred and I visited Paul yesterday, we were very pleased with how well he is doing. He was just a little agitated but was easily reassured, and was looking at us and talking (although we couldn’t understand him), and he smiled a few times. What a thrill to have him look at us and smile and try to make contact!
It's PARTY TIME!
After about 3 hours, Jomania came to visit with some friends and her sister Freda’s family, and Fred and I prepared to leave.
As we took off our gowns, several of the visitors surrounded Paul and I could see his arms and legs thrashing around.
I wasn't sure whether we still had to keep him calm so I thought, "Oh no, is it safe for all these people to get him so excited?" But apparently, with Mom and Dad out of the way, the party was just getting started and everyone, including Paul, had FUN!
As Jomania tells it:
"I saw gunk inside his mouth, and the nurses said they couldn’t clean it because he kept clamping his teeth shut. But when I asked, he opened his mouth and stuck out his tongue, and I cleaned it with gauze. Each time I showed him the blood clots and gunk that came out of his mouth, he pulled his head back and looked disgusted!
"Later, my sister Freda massaged Paul’s legs and he said, "thank you" and then put his leg up again and looked at her pleadingly, asking for more!
"When we got up to leave, I said ‘I’m going to go home and feed the cats and I will come back tomorrow.’ Even though he is restrained, he swung both legs over the side of the bed, trying to walk with us. To not make him mad, I said ‘I’m going to the bathroom and I’ll be back.’ He said, ‘Stop lying to me!’ and we all laughed, including Paul -- it was nice."
Today when Jomania and I went back, we prepared ourselves to be disappointed and find him like he was two days ago, because we know that progress goes up and down. But wow, he was even better!
He was very calm, looking at us and speaking, often well enough to understand if you put your ear next to his mouth – it was a thrill to hear him talking again! We aren’t sure he knew what he was talking about – he asked us to bring his laptop, and later wanted his sunglasses (his laptop and sunglasses flew off when he was hit – when I told him the police have his laptop, he gave me a VERY quizzical look), and he talked about houses and later mentioned registration (some of his houses needed to be registered yesterday). And yet we discovered that he doesn’t know who I am.
But other times he obviously knew what he was talking about. After Jomania cleaned his mouth again and pulled out another huge blood clot, he said very clearly that he needed some water in his mouth. So we gave him some wet gauze and he chewed and sucked it, then pushed it out of his mouth and asked for more. Many times he calmly told us he wanted the restraining mitts removed, saying "I don’t understand why these have to be on," and later "Disconnect these!" and just before we left he asked Jomania where her knife is. She said it is at home in the kitchen drawer, and she asked why. He gestured toward the mitts, indicating he wanted her to cut them off!
This morning the nurses had him sitting on the edge of the bed and took off the restraining mitts, and he was able to brush his teeth!
So, every day seems to bring exponential improvement over the day before, and it’s only the 10th day. He is still FAR from being anything close to his normal self and we know that any day, he may plateau and reach his final stage, but the gloom that had descended over us is starting to lift.
Thank you to all you dear friends and family who are praying and meditating and sending positive thoughts and visions, I'm convinced that this can make a difference.
Thursday, April 5, 2018 -- I love you. I will talk.
Yesterday I told several of you to expect a very positive update but as soon as I got home and settled on the couch with the laptop, I fell asleep, and didn’t wake until after midnight!
It hasn't all been positive since my last Journal update 3 days ago -- when Jomania, Fred and I went to see Paul the next day, he seemed confused and mumbled incoherently. We were relieved to find that it was not because he was deteriorating, it was because he was heavily sedated (he’d been too active in the morning) – whew!
But yesterday, when Jomania and I were there, wow! Just like at the last update, Paul was very calm, alert and "with it," but this time he spoke VERY clearly (although usually we had to lean down close to hear him).
He indicated one of the restraining mitts and said, "please take this off." When I explained why they are on, he actually smiled and said "okay." He said lots of work-related things, including asking for his laptop again and saying "I need to go to Jeffrey," who we found out is his lawyer.
And once he looked at me and held up his leg and said clearly and loudly enough for me to understand from across the room, "I need socks." I asked if he was cold and he nodded yes.
But tonight, when Fred and I went there, I was disappointed because he was again heavily sedated and was looking blankly at the ceiling even when we tried to get his attention. After they changed him and got him ready for the night, he was a little more alert -- he looked at us, and sometimes we could understand his mumbling, for example asking for water in his mouth (we got him some wet gauze to suck).
I asked if he remembered Mark (his brother) and he nodded yes, then said they put together stereos (which is true!). I told him that Mark is thinking a lot about him. I talked about other people, and reminded him that we are his Mom and Dad, and he smiled.
He sometimes tried to respond, but we couldn’t understand. So I leaned down and gently held his head, looked him in the eyes and told him he had a very bad injury and we understand it is difficult for him to talk, but that he would work very hard to get strong and learn to speak again. I said I don’t know anyone who works harder than he does, and I knew he’d do well. I then I did some visioning / positive thinking out loud, my version of praying for his strength and work to recover.
And then he looked at me and said clearly enough for Fred and me to understand, "I love you. I will talk."
Monday, April 9 -- Refresh and regroup; it's all about me
I try to write these updates when I’m feeling positive and hopeful and to be honest, there is a LOT to be hopeful about. Although Paul still needs to be heavily restrained and most of the time he's too groggy to respond (he’s no longer being sedated but his blood pressure medication can make people very drowsy), he’s no longer agitated and frightened, and twice in the last four days, he has been relatively alert and occasionally made some sense.
For example he’s asked how Stephan (his brother) is, asked Jomania for some of his favorite foods, and even responded to the nurse’s question by telling her the year is 2018 (he didn’t know what month it is but quite frankly, after more than two weeks of submersion in this freaky world, I’ve lost all track of that myself!)
And all his wounds are healing well, he’s ready to move to Intermediate Care as soon as there's a bed, and go to a rehab center soon after that.
So like I said, considering that this is only 3 weeks into a process that is expected to take a year, he's made a LOT of progress and there’s a lot to make us hopeful.
But for some reason I reached my limit this evening, and didn't think I could take it any more.
It might be because, in addition to worrying about Paul, almost every day has involved some drama or ordeal involving police, social workers, lawyers, banks, insurance, going to the worst part of Baltimore on Easter morning to look for the cats that Paul was taking care of, changing the locks on Jomania's and our homes out of fear for our safety, having to get more space on my iphone to get the apps we need to handle some of this stuff, and on and on and on. Not to mention that it takes us about 90 minutes each way to get to the hospital. Thank GOODNESS for CaringBridge to help us keep up with family and friends, it would be impossible otherwise!
Hopes dashed -- need to step back . . .
But the real reason may be that . . . well, I think I indulged myself in some very high hopes, and they were rudely and abruptly dashed.
We’d been alternating between, on the one hand, thinking that some day our Paul will be back just like before and laugh with us about all the adventures we’re having now, and on the other hand grieving for the guy we'll never see again and wondering how we're going to manage if he's going to have to be restrained for the rest of his life.
So just before we got to the hospital today, one of the doctors called to say that they planned to take out the feeding tube. OMG, HURRAY!
I got my hopes up -- it means he’s able to swallow and eat by himself!
Does this mean they'll take off his restraining mitts to eat? – oh, won’t that be GREAT!? Oh, he's progressing so FAST, our boy will go home SOON!
And then we find out . . . no. The reason they wanted to take out the feeding tube is not because he's progressed so well that he can finally eat -- they had given him some apple sauce and he didn’t even try to swallow it.
They're taking out the feeding tube because it shouldn’t stay in his esophagus much longer, so they want to surgically insert a tube to his stomach to feed him.
And when we got to Paul's room, he was once again too groggy to do anything. I started to feel light-headed and nauseated again, and needed to sit down.
Please don’t worry – I know very well that things will get better, I know to expect ups and downs. I’m just having a down, and decided to treat myself to two days off. Tomorrow I'll go and listen to the little singing group I normally join to sing at nursing homes and cheer up residents – I’m going to sit in the audience and let them cheer ME up this time! And I’m going to get my taxes ready, and finish other projects that I’ve been putting off for more than two weeks.
And then I know I'll be refreshed and ready to return and patiently watch him progress slowly/slowly. Jomania was very wise, and said to think about 6 months from now, when we can look back and smile at how discouraged we were when the progress seemed so slow. She's channeling my mother, whose book (that we're releasing this month!) says to step back and get the perspective of looking at the situation from a distance. I hear ya, Mom and Jomania! I'll bounce back and once again be hopeful and grateful for the progress he's making.
Thursday, April 12, 2018 -- OMG, he knows who we are, what a world of difference!
I still can’t believe it – Paul seems to have turned a corner! Now, before I explain it, I have to say that he has a long, LONG way to go -- he’s still only about 10% back, but what a world of difference from before! He’s sitting up, speaking very clearly, making jokes, and . . . HE KNOWS WHO WE ARE!
When we pointed to Fred and asked him who he is, Paul said "I don’t know" and then made a very exaggerated wink, and said he is "Doctor Sauerburger . . . Frederick." We all laughed, including Paul! Jomania, who Paul calls "Manna," said "I am Manna, your wife," he said, "no, you are Jo-MANN-i-a!" and again we all laughed.
His facial expressions were priceless, often conveying what he was trying to say. And he struggled to say what he wanted us to know. His words came out wrong, like he said something about a ticket, and when we repeated it he’d shake his head – no, that’s not what he meant. He got very frustrated, and several times asked for paper and pencil but when he got it, he couldn’t write anything.
We said we understood his frustration, and told him he had been injured in his head and it was normal to be confused and struggle like this, and that he would get better. He didn’t seem convinced. Many times, he said that nobody cares, and we told him about all the people who have been asking about him and praying. He told us to leave, so Jomania and I went to eat while he visited with Fred (Lynn, he enjoyed looking at your balloons!). When we came back, we continued to visit, and then he said he was tired and the nurses helped him stand up and get into bed, and we talked a little more.
I'll post some pictures here.
Looks like he might go to the rehab center in another day or two – if he progresses exponentially like he’s been doing, he’ll go FAR! Thank you, everyone, for the prayers and meditations and visioning that you’ve been sending our way, we feel so grateful for how he’s recovering!
Sunday, April 15, 2018 -- Cuddling with badass Paul!
Wow, I can’t believe how well Paul is progressing since I updated you last Thursday! He’s been alert and talking and cooperative ever since, and he seems to get better each day. At first he seemed kind of frantic, exaggerating his expressions, but each day he becomes more calm and intentional. Before I explain more, I have a little story to tell:
Ever since Paul started trying to speak several weeks ago, he’s been asking for his sunglasses (which the police have) and his cell phone (which was stolen from the hospital, along with his credit cards, money, keys to his and our home, etc., by a woman claiming to be his fiance or wife – that’s one of several reasons we changed the locks on our houses, I'll tell you more about that later).
So last Friday Jomania and I gave him one of my sunglasses, and he hasn’t taken them off since! To the left is a picture of him when he first put them on. The nurse said he looks like a badass, and I agree!
For the last few days, Paul has been telling stories, I’m not sure if he’s conveying dreams or fantasies or memories or what, but they are pretty scary. Friday, it was stories about spies or soldiers going to Afghanistan, yesterday and today it was about people who work for him to rehab or manage houses in Baltimore. In these stories they are usually scamming him or sneaking around and sometimes doing harm (Paul couldn’t describe what they're doing verbally, but made some motions like pounding his fist onto his wrist, perhaps indicating doing drugs or hitting someone?). He talked about himself being strong and able to handle anything, not falling for any scams.
But when we tell him he’s been in the hospital for three weeks because he was intentionally run over by one of the tenants, he doesn’t believe it, even after we show him his injuries and the beard he’s grown.
Mostly, though, he talks about "getting the F… out of here! NOW!!!! Bring my shoes and some pants . . . I’m LEAVING!" He doesn’t believe our explanations of why he needs to stay but thankfully, he cooperates rather than yanking out the tubes and needles and climbing out of bed. He keeps saying "no one cares," and gestures to dismiss us, but now I think it’s just his way of expressing his frustration when we can’t understand what he’s talking about. Which thankfully happens less and less each day.
Here are some of the things he’s doing:
He can read! Easily!
Yesterday when we needed to replace the batteries in the little fan by his bed, he opened it up and pulled out the batteries before we could even react, although he couldn’t figure out how to put the new batteries in.
He can manipulate smart phones – yesterday he got into my itunes (*I* haven’t even figured out how to do that yet!) and he scrolls through my email (if any of you get a strange message from me, it’s him!) and looks at pictures. I don’t know if he can text.
Paul's insight . . .
Several times while he had to hold his arm relatively still for the two hours it took to give the antibiotics intravenously (we promised to take him for a ride in the wheelchair afterwards), he said that he didn’t feel well, but couldn’t describe where or how. "Is it in your stomach? is it a headache?"
Finally he said something about not feeling good about being confused.
There it was, straight from his mouth! He feels out of sorts because he’s still so confused and frustrated.
When the two hours were up, instead of trying to climb out of bed for the wheelchair ride he’d been promised, he turned to his side and started to curl up.
Jomania had been reclining on the bed beside him (there was only one chair for us), and Paul reached behind and found her arm and pulled it in front of him to snuggle, and he closed his eyes and sighed (pictures to the right).
I left them to go get something to eat. When Paul asked where I was, Jomania explained, and Paul told her that his mom was out shooting someone.
When I got back, we got ready to leave. I leaned down to kiss his forehead and tell him I love him and will be back tomorrow. "All right, mom" he said.
Wow, that felt SOOO good! He had not called me Mom since the injury, and I hadn’t even had to remind him who I was before he said it!
Even thinking about that now brings tears to my eyes (hey, I haven’t cried in DAYS – there’s not much to cry about anymore!).
He did ask me, though, if anyone was F-ing with me and I said no, and he said he had several resources to take care of me if they did. I said he’s always taken good care of me, and we were safe. He smiled and started falling asleep.
Confabulations . .
Cyndy Greenacre, a friend who specializes in these kinds of injuries, calmed my concerns about Paul's stories in her comment below -- thank you Cyndy! She wrote:
"So great for you to hear him say Mom! I am shedding tears with you!
"His wild stories are called confabulation and it's actually a sign that he is becoming more aware of activities around him and of his own body and mind.
His brain is trying to sort out the roller-coaster moments of relative clarity to confusion by "filling in the blanks" to make some sort of sense out of the disorienting cascade of internal and external sensations, thoughts etc.
"It won't make sense to us and he will likely not remember any of it once he is more fully aware (or even much after he has finished saying it.)
Scary themes of violence, deceit, spies, conspirators, aliens or the like coupled with leaving the hospital or making evasive maneuvers are common.
After all, the conscious brain has been "offline" and is awaking to a different kind of reality.
We often judge reality by our own perceptions and experiences, so if the world is wacky, it's probably natural to think someone must be tricking or hurting us.
"Simple statements of reassurance without lots of rationalization he won't understand may help until it passes.
Checking to see that he is not hungry, tired, in pain etc may also help curb confabulations arising from these sensations.
"I once worked with a gentleman recovering from a TBI who periodically got muscle cramps in his leg. He was sure that mobsters were coming into his room at night and shooting or chopping off his leg. A dose of ibuprofen from the nurse kept the mobsters at bay.
"The confabulations should become more benign in time and then less frequent over time. Continuing to send you lots of love and prayers."
Wednesday, April 18, 2018 -- Paul's coming back!
I have some very exciting news! Tonight Paul is FINALLY being released from the hospital and will go to the rehab center!!! The infection that they’d been treating has cleared up, so his urgent demands to get OUTA HERE will be met -- I don’t know if he’ll like the rehab center any better, but we’ll see . . .
So meanwhile I’ll catch you up and share a few pictures from the last few days, and then get ready to go meet Jomania, maybe have a celebratory dinner out and then go see Paul at his new digs.
Paul’s eating now!
Until yesterday, Paul still wasn’t able to swallow but when we arrived in the afternoon, his feeding tube was disconnected -- he had passed the swallow test! How great it was NOT to be tethered constantly to the feeding tube and, even better, able to EAT! We eagerly awaited the arrival of his first meal in almost a month.
In the last week or so, he often talked about going out for ice cream, and guess what they brought for dessert! Strangely, he didn’t want any ice cream, and in fact had to be coaxed to eat anything, so Jomania fed him the mashed potatoes and meatloaf (pictures to the right).
Recognition and confusion comes and goes, except for Mom and Jomania . . .
Yesterday morning, Paul knew he was in the hospital but in the afternoon, he refused to believe he wasn’t in the back of a school building. However, he seems to know I’m his Mom without having to be prompted ... Monday he told Jomania that he was taking us out for sushi and that afterwards they would drop Mom off (pointing to me) and go home -- my heart skipped a beat! And he always can tell us who Jomania is if we ask.
Reaching out to family . . .
Paul has been enjoying chats on the phone with his Dad and brother Mark as shown on the left.
Yesterday Mark and his wife Jill and their daughter Thea put together a great video for Paul – I can’t wait to show it to him! I won’t be surprised if Paul doesn’t recognize or appreciate it at first, but the nice thing about having the video is that we can show it to him again as he becomes more aware.
Thank you everyone!
We really appreciate all the support you’ve given and the prayers / visions / meditations – I’m sure that’s a big part of Paul’s progress!
Meanwhile, today was the first time I was able to start resuming my own life, getting some things done that have been piling up. I’m feeling more relaxed and optimistic about Paul’s progress, and without having to travel 3 hours a day to see Paul, I’ll have more time. I just completed a project for a conference that should have been done weeks ago, and tomorrow I’ll start calling clients and schedule some orientation and mobility training. Paul’s coming back.
Saturday, April 21, 2018 -- Presence of Mind
It’s very, very hard to curb my enthusiasm -- Paul become self-aware today!
I'll explain in a minute, but first want to tell you he is now staying at a rehab center in DC.
They always station someone in the room to keep an eye on him, and the ward is locked -- we need to have someone let us in. There are 2-3 beds in his room but he has no roommates yet.
Before I explain what happened today, I want to share the wonderful reaction that he had while watching a video that his brother Mark’s family put together for him.
To the left, you can see him watching the video two days ago.
He was very confused that day, and usually talked randomly about very strange stuff that made no sense, but when he watched the video, he was very engaged and made perfect sense!
Yesterday he watched it again as if for the first time -- you can see his reaction to the right (I had to delete a few F-bombs so his niece could watch it safely!).
Thank you so much, Mark, Jill and Thea for making it!
Becoming aware, and plotting his escape!
A few days ago, watching the video from his brother's family was one of the few times that Paul seemed alert and "with it" -- the rest of our visit was almost entirely devoted to plotting how to escape the rehab center (below are some pictures of him frantically packing his clothes, and scolding us for sitting around without helping).
Once, he packed the bag (including the hospital phone!) and tried to hide it under his jacket to make his escape, but on his way out to the nurse's station he looked in the mirror and saw the bag bulging out and said, "No, people can see it!"
He couldn’t understand why he had to be imprisoned there. When we tried to explain what happened and showed him the story and newspaper clipping, he thought the guy who ran over him looked familiar, but nothing more, and he couldn’t believe he’d been injured and needed to heal.
Today was different -- today he seemed to be aware.
He recognized the guy, AND knew that the reason he was in court was because the guy didn’t pay his rent. AND he knew that the guy was renting a house from Paul’s other brother. All this he knew without needing hints!
And after we told Paul that his laptop fell onto the street when he was injured, he even had the insight to say, "I didn’t realize it turned from a 'I’m not going to court and paying the rent,' to 'F..-off and I’m going to kill you and run over you and destroy your laptop.' None of that makes any sense to me."
My mind is blown. He's starting to realize what's going on around him, and understand that he is injured and how it happened!
As I said, it’s very hard not to get excited and hopeful – so much improvement happened in just one day, and he never seems to regress, he just keeps getting better. He even talked about how difficult it was for him to think, and seemed assured when we said we understood, and that he was getting better and better. I can’t wait to see what he’s like tomorrow! Thank you, everyone, for all the prayers and meditations and visioning that you've been doing, I'm convinced that it's made a difference.
We’ll have a meeting with the staff Monday, there seems to be the possibility that he’s going home Tuesday, though that may be a miscommunication. Stay tuned . . .
Wednesday, April 25, 2018 -- Paul’s HOME – with lots of PICTURES!!!
Paul finally can go home!
I can’t believe it – well, I can believe Paul’s finally home, what I can't believe is that he’s home and has recovered SO much . . . AND continues to improve at such a speedy rate! Just 3 weeks ago, I thought we wouldn't see this for a year (if then!).
Jomania and I brought him home yesterday and I slept there last night, but the homecoming wasn’t easy.
After a grueling and sometimes frightening afternoon (including frantic calls to Fred and talking about calling the police and getting him committed for his own safety), I was not able to sleep all night, worrying and thinking and figuring out how we could possibly handle this, calling Fred several times in the middle of the night and considering alternate plans. I cannot imagine how Jomania felt, being the one responsible for his safety, medications, treatments, etc.
Fred described it well when writing to a friend:
"Thank ye for your thoughts and prayers. We are happy with the speed of recovery----he is home, and now the fun begins. He is articulate but aphasic (can't get the right word, and once in a while still talks gibberish while thinking he is making sense) but now he’s "with it" enough to want to drive or walk or take a cab to Baltimore and check out his properties [NOOOOOOOOOO!!!!! Gott sei dank!]
"So....we are taking precautions to prevent him from eloping and getting lost or hurt trying to walk to his IT job in Virginia. It WILL be challenging, but we are grateful because when this started, I would have been happy if he just recognized us at this point........"
Here’s what happened. On our way home, we stopped for lunch at a Thai restaurant (his first meal out of the hospital in more than a month!). When we got home, Paul greeted his beloved dog and cuddled his cats with a very happy reunion!
So far, so good --
The trouble starts . . .
But then he immediately started planning (with an intensity that could not be diverted!) how to get to the properties he was managing and take care of the stray cats he had fostered in Baltimore, and was frantic to get his laptop to prepare for a meeting he imagined was happening at his job in Virginia the next day, and get some credit cards so he could pay for expenses.
Nothing we could say or do (including showing pictures of him the day of the injury) could convince him that he was injured and needed to heal. He was getting more and more determined, and at one point he tried to describe something that he was struggling to explain by positioning a kitchen knife on the table, and when I saw him handling the knife, I freaked out.
I finally decided the only thing to do is to call the guy who said he was taking care of the cats and have him assure Paul they were okay; then take Paul to the bank and let him find out the situation for himself; and get him a laptop. (Since then, we’ve learned that he could be assured if we simply reminded him that his job gave him time off with pay to recover, and the properties are being managed well.)
Anyway, on the way to the bank, we thought he might jump out of the car or run off somewhere, so he sat in the back seat with Jomania, and she held his hand when walking, and we were ready to call the police if needed.
The bank manager was extremely patient and kind in explaining what he’d need in order to get a credit card, and Paul was able to remember it vividly even a day later.
[left, below] Jomania holds Paul's arm in case he runs.
The rest of the afternoon and evening was a delight!
We went to buy him a new laptop and then went to his favorite sushi place (for weeks, he'd been talking about taking us out to dinner there!), followed by scandalously delicious donuts. At the restaurant, the people were glad to see him back again but he didn't know them, and couldn't remember what kind of sushi he liked.
However I was amazed that, as we drove from place to place along some complicated routes (we didn’t know where some of the places were ourselves), he was able to direct us accurately -- it made his orientation-and-mobility-instructor mom proud!
But when we got home, there was more trouble and arguing, as he saw no reason for taking his meds or getting his tubes flushed or his dressing changed, and when trying to use his laptop, he got very frustrated and bewildered because he couldn't figure out how to get the password to connect to the internet, resented having to get assistance from tech support, and refused to allow us to schedule an appointment for them to come. Like I said, I tossed and turned all night, trying to figure out what to do.
This morning I thought we were in for another rough day, as he came out of the bedroom frantic about where he had left his brand-new cell phone. He couldn’t believe that he hadn't had any cell phone since his was stolen the day that he was injured, and that what we had bought was a laptop, not a cell phone.
But I guess what he (and we!) needed was some time to adjust, or maybe we had started to figure out how to handle it, because the rest of today went great! He finally got to take Blackie for a walk, he shaved and trimmed the beard that had grown for the last 4 weeks, and Jomania prepared some delicious, nourishing comfort food, fixed the way Paul loves it, and we were all calm and enjoying ourselves.
Paul is home.
We may have more ups and downs but really, the rate that he’s progressing is astounding to me, and I’m very optimistic. Thank you, everyone, for your prayers and thoughts.
Paul is starting to look into CaringBridge himself now, and would enjoy if you send him some messages in the "Well Wishes" link, or send him a card. Thanks!
Paul's first full day home -- taking Blackie for a walk again, enjoying Jomania's healthy, bountiful dinner, and finally falling asleep with his dog.
Saturday, April 28, 2018 -- Onward and Upward: all we need now is time
Happily, things have fallen into a routine now that Paul is home. He remains very confused, but I continue to see remarkable progress.
An example of the confusion was last night when Jomania woke him for his meds. He thought she was an intruder and asked where his wife is. And he often confuses or forgets what happened earlier in the day, and still confabulates, although now the stories are less scary and more realistic (which makes it difficult to tell if they are true or not).
But the progress is noticeable. When he came home Tuesday, nothing could convince him that he had been injured and needed to heal.
Now he talks about the injury offhandedly, and often refers to what he needs to do to heal faster (get plenty of rest, eat well, take walks, etc.).
Last night when Fred and I took him to dinner (picture to the right) to let Jomania have a night to herself, he said that on a scale of 1 to 100, he was a -50, and now he is a 75. I think that’s a pretty realistic assessment! And he’s more patient with us and himself as he struggles to remember and to explain things – he seems to understand that he’s getting better. And he’s showing good judgment when we are out, putting our mind more at ease about him doing something irrational and unsafe.
And thankfully there are things that were relatively unaffected by the injury, such as his ability to navigate and to read, and his computer skills.
Yesterday Jomania and I were stumped looking on the internet to find and print out a form for his disability insurance, and guess who came to the rescue?
He not only was resourceful in finding it, he then figured out that the reason it wouldn’t print is that a wire had been disconnected!!!!
Meanwhile, I thought that now that he’s home, I can resume with my life, but the last two days have been consumed with helping Jomania (who has her hands FULL!) deal with insurance reps, lawyers, making appointments for medical checkups and therapy, and the police.
There is a LOT more bureaucracy that still has to be done, and I’ve found that when talking about or struggling with some of the ordeals, I still get light-headed and queasy. So I’ll probably continue to put my own things on hold for a while, to reduce the pressure and allow me to give Jomania a break a few times a week (the stress that I feel is undoubtedly multiplied many times for her, being his caretaker 24/7!).
I have to give a shout-out here. My dear friend Dr. Cyndy Greenacre is an orientation and mobility specialist working at the VA and is well known for her expertise and experience with people with brain injury. There have been at least 3 times when she saved our sanity, helping us understand the baffling and scary things that were going on with Paul and how we could support him and ourselves. Cyndy, THANK YOU! I wish that every family who goes through this could have their own Cyndy, I don’t know how they can do it without you – I love you!
And the support and prayers / visioning that we’ve gotten from you, dear family and friends, has helped us get through this ordeal – thank you BUNCHES!
Lastly, I need to say that during the first long, horrific weeks after Paul’s injury, my hope and vision (which I thought I’d never see) was to have him be the way he is right now – talking and laughing, loving, and enjoying life. He continues to get better, but I feel so grateful and satisfied, and will be patient as he continues to progress.
Wednesday, May 9, 2018 -- The Good, the Bad and the Bewildering
There hasn’t been much to report for the last two weeks, but I’ll catch you up and then share the Good, the Bad and the Baffling that we experienced at the police station yesterday.
In general, Paul and Jomania have been doing well, taking lots of long walks to run errands and go to the mall and restaurants, and enjoying themselves. And I’ve started to resume my normal life.
Hide behind that tree!
Sometimes Paul seems to be back to normal, and then something makes me realize he still has a way to go. For example, he still confabulates, and often thinks that bad people are after him. After walking with Jomania across the little street at his rehab center, he ducked behind a pole until the guy who was crossing behind them had passed, and once when he and Jomania were walking their dog, he hid behind a bush because someone seemed to be driving suspiciously through the neighborhood.
Thankfully, he's becoming aware that his fears are probably unfounded -- I say "probably" because we all changed the locks on our doors for fear of some of the people involved in this drama (as explained below), and are keeping a watchful eye ourselves!
We told him that we understand that being afraid of things like that is normal for his condition, and he laughs when we tease him about it by asking if the cars parked at the school across the street are there to spy on him.
I asked Cyndy, our "TBI Whisperer," how we go from here.
At this time, we still keep Paul under our wing, not allowing him on his own, following doctor’s orders that he not work with machines (lawn mowers, exercise machines and such) or drive, discouraging him from making any important decisions, and not relying on his judgment (such as whether / how to retrieve his beloved cats by barging into one of his empty houses in the bad part of Baltimore and possibly encountering workers who sometimes go in there to do drugs -- AGGGGHHHH!).
I think I told you that on Easter morning, Fred and I went up to Baltimore with a police friend of Paul’s to retrieve the cats, and discovered that they’d been moved.
So now that Paul is home, we’ve discussed this a LOT, and each of us – Paul, Jomania, Fred and me – has different fears and concerns and motivations about getting the cats to safety, and finally made a bond with each other that we won’t do anything unless each of us agree.
More on that later but meanwhile, I’ve been so pleased and impressed that, although Paul is disappointed with these restrictions, he seems to understand they are necessary, and is patient because he knows he is getting better and . . . well, I keep assuring him that there is a process for breaking free even though I don’t really understand it myself. I’ve been telling him that as his therapists work with him, they’ll determine when he’s ready for more freedom/responsibility and they can ask the doctor to approve letting him have more freedom.
I asked Cyndy if that is right, and she said,
"Asking the therapists and the doc is a good idea. Make notes of things you think he is doing well and when you are concerned for his safety and judgement. If he shows impulsivity and at times lacks judgement or safety awareness, he still needs guidance. The pattern of improvement and plateau will continue.
"He might be ready to make some decisions, but not others, especially if emotions run high. He may be fine when he's fresh, but less so when he is fatigued. (BTW, are their cats being well cared for? That would weigh heavy on my mind.) The fact that he can be both disappointed and understanding is a great sign -- that's flexing some frontal lobe, baby!"
Cyndy also asked if Paul’s therapists have given him screeners to determine if he is competent and capable of making his own decisions, and I think that’s something we’ll take up when he starts his new program next week. He’s been getting therapy a few times a week -- primarily speech and cognitive therapy, also physical therapy for shoulder and thumb injuries that had gone unnoticed with all the other things he had to deal with (we think he injured them trying to hold onto the car as it pushed him along the street).
But we are lucky that he could enroll in an intensive program that has therapy individually and in groups for 5 hours, 4 times a week, starting next week. This program includes outings where they have to plan, problem-solve and make decisions in realistic settings, rather than during 45-minute sessions in a clinic.
I’m very excited for him to begin, and hopeful that the program can not only help him improve, but help assess when he is ready for Jomania and us to step back and give him more freedom. Already, I noticed that Jomania trusts him to go out for long walks with the dog on his own, which we did not feel was safe when he first came home.
POLICE STATION: [NOTE ADDED LATER -- I wish I had known to stand up for Paul's rights at the time, as explained in Cyndy's message below, and am very angry with how the police handled this situation.]
Okay, now for our trip to the police station yesterday.
I mentioned that the police have Paul’s laptop and sunglasses which they found at the scene, and that his cell phone, credit cards and all his personal belongings were then stolen after Paul arrived at the hospital by a woman who claimed to be his fiance or wife.
A few hours later, when Jomania was worried that Paul hadn't come home and tried to reach him, this woman texted her from Paul's cellphone to say that nothing was wrong, and delayed the hospital from informing us of his situation (I finally got a call from the hospital at 3:00 the next morning, 12 hours after he was injured).
That woman also represented herself as his family to the District Attorney (who didn’t know how to contact us until a month later!) and served as his spokesperson at the hospital, including deciding who was allowed to visit him, and signing for permission for him to be a subject in medical research.
When we were finally able to see Paul the next day, we were confused about the situation and it took us a day or two to convince the hospital staff that we were his family, using what documents we could produce, and the woman was escorted out of the hospital by the police with the promise of returning his belongings.
I won’t get into the details (it would make a great soap opera!) except to say that dealing with this situation made the ordeal of the last 6 weeks even worse, including having to change the locks on our houses out of fear of this woman and her friends, and spending many hours talking with police and bank managers and finally talking to lawyers about getting power of attorney because she was using his credit cards and withdrawing money from his bank accounts and we could do nothing to prevent it.
Anyway, last week the police managed to convince the woman to bring his things back, and yesterday we had an appointment to claim his belongings and let the police detectives who were working on Paul's assault case meet him.
When we got there, we learned that the woman had not brought Paul’s cell phone (she brought someone else’s old cellphone instead), nor had she returned Paul's driver's license and other things.
The police said they wanted to interview Paul alone, and after talking with him for an hour they concluded that he wanted this woman to keep all his belongings. Then they told us that they couldn’t give Paul his laptop and other belongings that they had picked up at the scene, because he didn’t have his driver’s license. Even his passport would not suffice, nor the drivers’ licenses of his wife or parents.
All that was strange enough, but what affected me most was to realize how disjointed Paul’s thinking (or maybe his language?) was. After Paul’s interview with the police, he stayed with Jomania and me while Fred talked with the police about our plans for safely rescuing the foster cats. As Paul explained what he thought was happening with his cell phone and other belongings, he didn’t seem to be making any sense – I hadn’t heard him talking like that since he got out of the hospital.
In retrospect, after reading Cyndy's message last night, now I wonder whether he was being affected by fatigue, high emotions such as anxiety about his cats and excitement about being with the police and hearing the details of the incident (which the police have not shared with us yet), and the fact that he was overdue for some of his meds.
Anyway, I wish I had known then what I know now because I might not have been so alarmed.
But at the time it felt like a very rude awakening, realizing that he hadn't progressed nearly as much as I had thought, and I started to sob.
But guys, as I sobbed and hugged Paul, telling him that he wasn’t making any sense, his reaction was to comfort me.
And on the way home, he was cracking jokes about his deficits and had us all laughing hysterically. Then, as we’re all talking about his cognitive problems, he interrupted to tell Fred that he’d have to get out of that lane at the 4th traffic signal, and he was exactly right!
Anyway, in spite of all the trauma and drama, I think we’re doing well. Paul continues to improve and we continue to learn; we have a plan for him to get the cats safely (a plan which everyone, including Paul, approves!); Paul is getting the best treatment possible; and, most importantly, we are all enjoying life and growing from this incredible experience, extremely grateful for the progress that he’s made.
Thank you again, everyone, for your thoughts and prayers, I know they have been making a difference.
NOTE ADDED LATER: After we told her what happened, Dr. Cyndy Greenacre, our "TBI whisperer," said that people at this stage of brain injury should never be interviewed by the police alone, or give testimony.
When people recovering from brain injury are still confused, as Paul was, they can unintentionally be led into saying all sorts of things just by suggesting it is a possibility,
because then they confabulate a story about it, believing it to be true.
She said, "The ability to make sound decisions, give reliable reports, and reason deeply comes back slowly, unevenly and incompletely over an extended time.
This is an example of why you can't intensively interview a survivor of a severe brain injury and expect sound outcomes -- especially not for an hour about high-stakes subjects.
When the police or investigators try to interview one of our patients, we have the psychologist talk to the investigators first to help them understand brain injury; we make sure the patients have legal capacity; and we have witnesses in the room during the interview."
Sunday, May 13, 2018 -- Happy Mother's Day . . . the cats are retrieved!
Happy Mother's Day, everyone! This Mother's Day finds me content and VERY grateful that Paul is doing so well and that I have such a wonderful family and dear friends!
Before I go on, I'll share the great news. Ever since Paul became lucid, he has been concerned primarily about the cats that he had been fostering before the injury. Well, Friday he and Jomania went to Baltimore with Jomania's brother-in-law George and his cousin Habib to get them, and SUCCESS -- the cats are now at home with Paul! Thank you George and Habib!
Meanwhile Fred and I are in Indianapolis enjoying a visit with Mark, Jill and Thea, the stars of the delightful video that Paul watched when he first started to recognize and remember people. It’s so gratifying to be able to leave town and know that Paul is happily at home, well-cared for by Jomania as he continues to progress. Tomorrow he will start the intensive rehabilitation program, and I’m optimistic that he will continue to improve quickly.
Thank you, everyone, for your support and prayers, and thank you to our dear neighbor Janet for taking care of our cat while we’re away (Paul used to be the one to do that). Life is looking great!
Monday, May 28, 2018 -- Settling in for the long recovery . . .
"I am normal, it’s just that my brain doesn’t let me think!" Paul mused last Wednesday, although he didn’t remember saying it a few minutes later when I scrambled for something to write it down.
Starting last Tuesday, Paul’s been working 3-4 days a week in his rehab program to improve his memory, focus, judgment and problem-solving, as well as strengthen his shoulder and hand that were injured when he was run down. We know that progress will probably be slow, and hope to talk with the staff later this week to find out what stage Paul is in, how we can determine when he’s ready to make important decisions, etc.
Meanwhile he and Jomania are staying active and enjoying themselves, walking around the community to shop or run errands or eat out almost every day that he’s not at the rehab program, although he notices that he gets tired more quickly than he used to.
To the right is a picture of Jomania at home with their cats snuggling on their Steelers blanket.
Our updates will probably be less frequent, now that Paul's progress is not as dramatic as it was the first few months. Meanwhile, thank you again for all your support and thoughts and prayers and love!
Sunday, September 16, 2018 -- "YES! Oh yes, he GOT it . . . NICE!"
That's one of the cheers I heard from Paul and his dad, who are in the next room enjoying a Steelers game again, as they used to do every week, yelling cheers and expletives (apparently this game isn’t going well -- I hear more expletives than cheers, and things like "OMG, they suck so bad!").
The only thing that is different from last Fall is that instead of driving here with Jomania (she and I usually watched a girly movie while they watched the game), he got here by walking two miles to the Wheaton metro station, transferred to the Orange line at Metro Station, and then I picked them up at the end of the line.
I asked him how he’s doing so I can give you an update, and he said he’s "waiting to be normal again." However, he then said that regarding being able to figure things out and understand, "I don’t feel different from what I was before the injury."
I agree! He still has trouble remembering words and numbers, and I sometimes need to remind him to keep focused without rambling, but he seems to have no trouble understanding anything, from working on his finances for his tax report, to figuring out what’s wrong with his plumbing and how to fix it (although he does have trouble understanding how the Steelers can be so inept!).
To the right is a picture of him helping me understand what we have to do with our TV to stream movies off the internet.
Physically, he can’t taste or smell like he used to, he has ringing in his ears with some hearing loss and positional dizziness (although this has improved a lot), and damage in his shoulder and knee, but otherwise is doing well. He’s making plans to have his driving assessed so he can get back on the road again but in the meantime, he and Jomania are very resourceful about getting where they want to go, using metro, buses, MARC train and Uber.
The trial for the guy who tried to kill him was postponed until the end of October because the prosecuting attorney was sick, and I’ll send another update then.
Meanwhile thank you, everyone, for the support and kindness you’ve shown Paul and us through this ordeal!
I must say that this experience has helped me prioritize what is important in life, and I’m so very, very grateful that things have turned out as well as they have.
Thursday, December 20, 2018 -- Thank you everyone . . . our last update!
Hi everyone! It's been a very long time since our last update, and we wanted to check in for one last time and tell you what's going on.
This afternoon we went to the hearing where Christopher Donnie Smith Sr., the guy who ran over and injured Paul, was sentenced. Last week, on the morning that his trial had been scheduled, Mr. Smith accepted a life sentence with the possibility of parole after serving a mandatory 20 years.
At the sentencing this afternoon, Paul read his statement of victim impact. Fred and I had thought that we would have to help him write it so he could keep it focused, but he did a great job himself -- I thought it beautifully conveyed in his own words what he's had to deal with.
The experience of the hearing was rather emotional for us. The courtroom was almost empty except for Mr. Smith's wife and another family member, and us. After Paul read his statement, the judge asked if others wanted to speak on his behalf and, after strong protests of Mr. Smith's lawyer were overrulled, Jomania, Fred, Paul's brother Stephan, and I came forward one by one and briefly talked about what this has meant to us.
Then Mr. Smith's lawyer talked about the extenuating circumstances of his depression, mental illness, and anger management issues (ya think?). His family did not offer to come forward and speak for him, except to clarify that his name was Mr. Smith Sr, not Jr -- they didn't want his 20-year-old son to be mistaken for him in the records.
We were sitting a few rows in front of them and at one point Mr. Smith turned around and looked past us to his wife -- I couldn't read much from his expression.
The judge was very understanding, I thought. She spoke about what a tragic event this was for everyone involved, lectured Mr. Smith and then sentenced him. For me, it was very gratifying for Paul and the family to have our chance to be heard, and to see justice done.
HOW'S PAUL DOING?
I'm so grateful that Paul has progressed so much further than I had ever dared to hope, and is enjoying life.
He sometimes has trouble searching for a word or keeping focused, but who doesn't have that problem sometimes?
In our final update, we want to thank you, all our dear friends and family.
It was your love and support that made this ordeal bearable.
Please enjoy the video we made for you this evening -- we love you, and wish for you and your family good health, happiness, joyful holidays, and a 2019 that is your best year yet!
We are very thankful to CaringBridge for enabling us to keep in touch with and get support from our family and friends. If you would like to donate to help other families, you can use the link to the right below. Thanks!