Our New Normal

Last night while you were Lying in my arms And I was wondering where you were You know you looked just like a baby Fast asleep in this dangerous world. Every star was shining brightly Just like a million years before. And we were feeling very small Underneath the universe. And you know that I'm gonna be the one Who'll be there when you need Someone to depend upon When tomorrow comes... When tomorrow comes... --Eurythmics It's been the longest, most eventful summer, and it's only just past the Fourth of July. We've just come back from Joshua Tree, an appropriate full circle. When I first alerted friends on social media about Jon's stroke, it was April 29, and I posted a photo of him during our spring trip to the desert two weeks prior. When Jon was taken to the hospital on April 26, I didn't know if I would ever see him be so happy and so himself ever again. Jon doesn't remember any of it, except the last few days i...

Where does our human soul reside? In our own consciousness of being (present, through sensation, the physical world, interaction with others), in our memory of being (past, fragments of memory, whole recitations, a library of experiences tucked away but seldom retrieved), or in our creative being (imagining what our sensate selves have not encountered, extrapolating from the “seen” and leaping into the “could be”)? For most people, it’s not necessary to contemplate a splitting of any of these selves. We grow, naturally, from infancy to adulthood, the multiple parts of our brains weaving together a consciousness that takes in the enormous amount of data from the world and turns it into judgment, narrative, and art. I’ve been re-reading Oliver Sacks. If you’ve never read his works, they are science and soul, side by side. As each patient case comes to him “presenting” with symptoms, he proceeds with the neurological evaluation, but also reveals the deeper ways in which each indi...

W here do you turn to for answers, advice, solace, laughter, when you've been coping with a serious illness in the family? Each other, of course, is in many ways the true answer. But there are many moments when you're alone at night, and the person you might normally turn to is the one who is in the hospital. So at those times I turned to my childhood best companion, a good book. I've mentioned before that Jill Bolte Taylor's first-person account, "My Stroke of Insight," is a wonderful way of understanding stroke and stroke recovery. Her description of what it was like to re-learn brain function, and the crucial role her mother played in her recovery, was an eye opener. All through her 8-year healing process, she emphasizes how important it was that the people around her believed and expected her to regain the functions she was working so hard to achieve. There was no room for doubters, or negative treatment, or as she called them, "energy vampir...

It's been about a month since Jon had his stroke. He's home from the hospital, and walking, talking, cooking, and conversing pretty much back to his usual self. Except for some cognitive memory recall, and numeric calculation abilities, he's regained a lot of his outward appearances of his old self, that most people would not know the difference. Because his injury was cognitive/linguistic, the healing and recovery is more subtle. It's the part of the iceberg you can't see from the surface. And everything is different. I think it's time to write about the event itself, which I've been putting off, and dreading, but is a necessary part of this story. Sunday, April 23 was a long and busy day for each of us. It was the usual shopping, cleaning, cooking, errands day. It was much more the norm that we ran errands separately, since Jon long ago gave up the boyfriend requirement of sitting in "men's chairs" while I looked at shoes. I also...

It’s been an eventful four days. In some ways, exactly what we expected, and in other ways, completely surprising.  When Jon was discharged from the hospital, we were told he was a fall risk. He had to be attended to at all times and even had a night sitter, as he would try and get around, turn off the bed alarm and try and do things around the room on his own. (The last night before he came home he didn’t talk much, but that might have been due to tiredness, or the presence of the sitter in the room.) Driving home, he was quiet but alert, and seemed to be taking in everything around him. The next 48 hours were harrowing, not medically, but because this was a transition to a new level of interaction that we all were not sure about.  When someone comes home to convalesce, it’s difficult. Home is where you’re in control, you do what you want, you know how everything works. That isn’t the case after a prolonged hospital stay. Prior to Jon’s homecoming, Alex and the b...

Today is the big day--Jon's first day back home! It's hard to believe it after three weeks in the hospital. I've got to say the last week has been a rollercoaster of emotions. Last Friday, his medical/therapy team gave us their update on what their recommendations are for his discharge, and some of it was hard to hear. They recommended 24/7 care; because of his cognitive and memory issues. If he were home alone and there was a fire, there was no certainty that he would be able to call 911, or realize he should leave the house. At that point, there were also some substantial coordination issues and assistive devices needed during his daily routine (a wheelchair and walker). It was a very, very difficult day. Saturday I made the choice that whatever was ahead, we would make it work. I would be happy for every moment we have. I married the sweetest most loving person on Earth, and that had not changed one bit. If you had told me two months ago that I would take my husband...

It’s pretty amazing how much the stroke has changed so many of the external parts of our lives, even though some other parts of our lives are blessedly the same. The boys still argue with each other with regularity, work conundrums are still the same, and ice cream sandwiches disappear from the freezer before I get a chance to have a single bite. (I’ve started hoarding sandwiches in a second location, but I’m not saying where.) “How are you?” ask friends, genuinely concerned about how we’re doing. I describe it like this: I feel like I have four full time jobs. One, planning and managing Jon’s care and progress. Two, figuring out what’s going on with my kids, and making sure at least most of their basic needs are covered (and when they’re not, here’s a twenty, just go down the street and find a taco truck—tacos can fix most problems). Three, my real “career-job” (which, by the way, I’ve discovered drives and sustains me in a way I never realized until now). And four, the logistics...

A beautiful day for a selfie in Hazard Park Yesterday I spent most of the day at the hospital, and got to see firsthand what Jon's day has been like. He's not kidding when he says every day is pretty much the same. Three different therapies, three different meals, medications, blood pressure checks, the regularities of hospital schedule. It's like going to school, and living in the school, for weeks. I can see why the nurses and doctors keep assuring me that once Jon comes home, we'll see an improvement in his progress. At the very least, family life provides differentiation in the days, even though we are the same old people all the time. In the hospital, everything looks the same, and even the clothing doesn't change from person to person. The therapies themselves are fascinating. It's repetition with purpose, combining questions, commands, physical movements, verbal cues, and sequencing to rewire the brain. It has given me insight and some ideas in usin...

Early on in this process I gave Jon an iPod with his favorite music to stimulate his memory. As he gained more and more alertness and lucidity, he began to get perplexed because he was looking for his usual apps--email, messages, etc.--but they weren't there on the device. Now you don't necessarily give someone with a brain injury access to the all their usual things. Working back to complex decision making (processes that take multiple steps, not Middle East peace talks) is going to take a while. But I figured the most he would do is delete a bunch of his own emails, or take calls from telemarketers, so yesterday I gave him his phone back. Here's what happened. He took random photos: his feet, the meal tray, a partial selfie. He's become a millennial. A short while later, he must have deleted them, because they're no longer in the phone. He texted his brother, Al: "Hi Al" He answered a text from one of the tenants: Tenant: Hey Jon I really need ...

Edmund from OT is friendly young fellow from Hong Kong, and I think Jon enjoys working with him. He reminds me of one of his favorite cousins, Fong. One of the advantages of being in LA is being surrounded by myriad cultures and people from all over the world, many of whom converge in some way through large universities like USC. So it shouldn't be too much of a surprise to run into members of Jon's team who happen to be, and speak, Chinese. Edmund: Do you know me? Jon: Yes, you're a doctor. Edmund: My mother would be happy to hear that! Do you know your name? Can you write it down for me? Me: Ah may ah, May Man. (Jon writes his name in characters.) Me: Is that right? Edmond: Ho May Man? Me: Yes! That's his Chinese name. We often hear that bilingualism wires the brain early on, opens neural pathways that is different from monolingual brains. I'm hoping this offers an advantage in Jon's healing process, as he is fluent in both...

" And do you feel scared, I do But I won't stop and falter And if we threw it all away Things can only get better" —Howard Jones It seems like every four days we are suddenly in the position of having to adjust to living a slightly different version of our lives. Not radical changes (except the first day, which was a complete shock to the system) but subtle re-orientations to life. Today we received an update from Jon's therapy team, and from their assessment, he should be ready to leave the hospital and come home on May 18, after exactly a 2-week stay in therapy, preceded by 3 days in the main neuro floor, and five days in the ICU. I think it will be great for him to be home, especially since he'll have been in the hospital for close to a month in total. Patients often will make better progress once they leave the hospital, too, because a hospital, even a really great one, is still not home, and can be an "unreal" environment over the lo...

What does it mean to be with someone through a serious health event, especially as a spouse? I've been thinking about marriage lately, of course my own, but also the marriages of other friends who have been through hard times and circumstances themselves.  In the daily back and forth of being with someone, it's easy to take things for granted. It's also hard work, and not always fun. And there is also the matter of giving the other person space to be an individual, all the while trying to grow together as a couple. I'll admit that one terrifying aspect of almost losing Jon is for selfish reasons--I've put so much of my life in our relationship, I just can't imagine things any other way. No one wants to think about that. It's like losing part of your self. Every morning I pop wide awake, get the breakfast and lunch wrapped in foil for the kids, then head out to the hospital. It feels natural now, which is kind of scary, how we have adapted in an ...

Today was a little bit harder and a little bit easier at the same time.  Alex, Chris and I met up at the hospital at noon, because meal times are the only “sure” times that Jon will not be in one of his three hours of therapy work. The good news is that Jon has regained his appetite. He seems to really be partial to fruit. Maybe his body is craving the liquid and the energy of sugars. Physically, he still has his muscle mass intact, it’s the level of coordination and balance that his brain has to re-learn. I never realized how many steps are involved with just maneuvering to turn a corner. I glanced at his schedule for the day, and remarked, “Oh good, looks like your schedule ends at 2 today.” He commented, “It’s the same schedule every day.” That was a surprisingly long comment, especially since he started therapy. I think he’ll be pretty tired most of the time we see him, at least for the next week or two, since he’s in intensive activity, and after that, his bra...