Our New Normal

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When Tomorrow Comes

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

Awakenings of Our Own

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

Tracy Morgan's Aunt Flossie

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

The Days Before the Bleed

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

Head scars and all

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 boys and I

Home Again

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