Our New Normal

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...

Some days are going to be harder than others. I"m going to have to accept that, and so are people around me.  After the flurry of panic in the emergency part of this situation, we are easing uncomfortably into some type of routine. After my hysterical moment Friday night, I went to bed (I didn't post to Facebook, but did write up as an entry. It was tough to write and will be tough to read.) I was supposed to drive Corey to take his SAT the next morning real early, but I woke up startled an hour too late, and rushed into Corey's room. We stared at each other in disbelief, and I expected him to be upset, but instead he hugged ME to give me comfort and said "It's okay Mom, I can take it in June." When did he become so like his dad, and I didn't even realize it? With the morning test taking off the table, I suggested we make a trip to Target to pick up household supplies. Friends and my parents have been really kind and generous with providing food ...

Dear Universe, Sometimes you are simply too much all at once. This was a tough, tough day. Thank God for my car. And Jennifer, my best friend from 7th grade, my "sobbing in the car" phone buddy, even though she is thousands of miles away. I've been bookending my days (mornings, evenings) with a visit to the hospital every day. Since Wednesday of this week, I've been throwing in hours in the office. Today is Friday, and it was Jon's first full day on the Rehab unit floor. Apparently it was also my day to have a breakdown. I was so looking forward to this day--in fact, to celebrate, I brought a tray of breakfast snacks to the floor. The unit team is wonderful, and I'm so happy Jon is able to get such wonderful care in a great facility. I think what came as a shock was how long the road seems to be right now. I was completely unprepared for everything today, the same way I was totally unprepared for everything the night of the stroke. All the possible sce...

Things I find funny Tiny nurses with giant patients. Thank goodness for Lift Team to hoist 200+ lb. people around. In ICU they had these air mattresses to help prevent bed sores, but they are very slidy. Jon, with his necessary head elevation, kept sliding down the bed toward to the foot, causing his legs to dangle off the sides. His tiny nurse, Bea, and I contemplated trying to pull him up by ourselves, then thought the better of it. He’s heavy when he’s awake—but unconscious? He could easily topple the both of us. Jon’s answers, unfiltered. OK, I hope this doesn’t sound mean, but some of Jon’s answers have been downright hilarious. The nurse administering the pre-MRI questionnaire asked Jon standard questions of whether he had any tattoos, body piercings, implanted devices, metal plates, etc. He answered yes to every single question. (What a mental picture!) When asked today “Do you know where you are?” He answered “A planned community.” We’re in Boca? W...

Hi there, Good news everyone! Jon is in the process of being medically cleared by neurology, and will be moving to the Therapy unit shortly. It is on the third floor of the same building, Keck Hospital of USC. Same directions as the before: He is in Keck Hospital of USC (the main hospital); the easiest way to GPS there is to punch in 1501 North Soto Street as the destination. The Parking lot closest to the hospital is at the corner of N. Soto and Norfolk, and you can walk uphill a bit to reach HCC 1, where you will be in the Gold Lobby. Ask directions and proceed to the Cardinal Lobby, which is the main Keck Hospital of USC building.   It is open visitation hours there, from what I understand, and they encourage visits and interaction. If you would like to bring something for the visit, I recommend brain stimulating activities like puzzles, maybe a lego kit, or alternatively, food that can be shared with the nursing and medical staff--they are his guardian angels. The na...

Yesterday I decided I would come back to the office, just for a few hours, to regain a foothold into the "before." It's jarring to be outside of your routine, plunge into someone else's daily world, and then attempt to merge the two together. Because of the nature of Jon's day, and because he is responsible for so many different things, it really took some detective work to piece things together, and Alex and I tracked down the various pieces, and other family members pitched in to cover for the gaps. I read somewhere once that married partners "store" some pieces of information in the other partner's memory. That's definitely true for Jon and me. Over the course of time, we've divided up responsibilities so completely that his mental hard drive and mine have very little overlap. I remember to the holiday planning, vacations, family outings, phones, small household utilities, college planning, dinners on the weekend. Jon keeps the building ...

So here we are at the end of a long day. Jon is napping, giving me a moment to reflect. He was moved from ICU to the regular side of the floor around 11, and he had a bit of soup at lunch and also again in the early evening. He's now is 7 North, in the same building. This side of the floor is busier, so there is more activity in the floor, and he also has fewer medical interruptions. The IVs and feeding tubes are going to be removed, we are just waiting for the medical staff to come and take off everything. It's great news, but a little scary to know he won't be directly attached to monitors. (Hypochondriac me--did I mention I had Jon take me to the ER because I had what turned out to be a clogged ear? I was convinced I was having a weird "woman's" heart attack.) So the afternoon has consisted of mostly just being together, but I got him out of the bed, standing briefly, and into the room chair. He's minimally talkative, except in brief bursts. While w...