I never saw a stick of butter I didn’t love, or a steak I could pass up. My idea of exercise is getting up from my desk about 4 and taking a stroll around the block with the dogs to air out the kinks in my long over-stressed body. I work, and work hard, as a writer: I’ve written 36 books and countless magazine articles, mostly about food.
Not so surprisingly, some of those choices have caught up with me. Last March, I had open heart surgery, and was under anesthesia for more than 6 hours, while the docs scoured out the remains of almost eight decades of indulgent living.
In the weeks following the surgery, I noticed some dramatic changes. People would come to visit in the hospital and I had only the dimmest memory of their faces. I couldn’t remember their names. And when I went to rehab, I couldn’t keep the schedule straight. I would go on the wrong day, or the wrong hour, or the wrong week, no matter how rigorously I wrote the appointments on my calendar.
The worst moment was: once I got the green light to drive again, I jumped in the car and took off. But despite the fact I’ve made that drive thousands of times, I got lost en route to the store. I ended up pulling off to the side of the road and crying.
That, more than anything, made me realize that since my surgery, I had some pretty big holes in my memory. My friends had been telling me that I repeat myself a lot, but now it really sank in that this wasn’t just forgetfulness: it was something related to having been put under for surgery.
When I consulted my doctor about my post-surgery memory loss, he was quite calm about it. “Just give it time,” he said. “Your memory will come back. Your brain needs time to heal.” My cardiologists also say that a “flaky memory” is perfectly normal.
Just give it time,” he said. “Your memory will come back. Your brain needs time to heal.”
My heart was stopped over 14 months ago. That’s a big chunk of the time I, as a nearly 80-year-old woman, likely have left. How much more time do I have to give?
One day, after trying to find directions to the store, I broke down in my living room, alone except for my sweet dogs, who stared into my tear-streaked face with beseeching looks. When I recovered, I got angry: I decided I was going to sue the doctor who had put me under. He must have made a mistake.
But when I hit the internet, looking for personal injury lawyers, I discovered that it was completely predictable–common, even—to suffer memory loss after long periods of anesthesia. And while I may only have a dim memory of signing a consent form before surgery, this possibility is laid out there, so I likely didn’t have a case.
I discovered that it was completely predictable–common, even–to suffer memory loss after long periods of anesthesia.
Since then, I’ve been thinking of my mother a lot lately. Like all of my female forebears, she too suffered from high blood pressure, and ultimately died from a heart-related ‘incident.’ (Don’t you just love the use of that saccharine word – incident? Why don’t they call it what it is? An effin’ train wreck.)
My mom had a hard life. After my father came home from the war, racked by night terrors and permanently disabled, she cared for him for the next twenty years, despite her own health complaints. But her generation knew how to get through tough times. As she said to me often when I was a child: just go to your room and don’t come out until you have a smile on your face.
Now, nearly 80, I’m finally trying to assume her same sense of poise and optimism, in the face of my own memory loss. I try to buck up, look at the bright side, and not kick every stone in my path. My life may be harder, and more frustrating than it once was: but I’m still alive, to take care of my dogs, enjoy my children’s success, and take pleasure from my friends.
And maybe, if I’m patient and live long enough, my doctors will eventually be proved right, and my brain will finally get the time it needs to heal.
https://folks.pillpack.com/wp-content/uploads/2019/06/BN-WT674_bkrvob_GR_20171227132829.jpg8101242Linda Eckhardthttp://folks.pillpack.com/wpinhere/wp-content/uploads/2017/03/folks-logo-1.pngLinda Eckhardt2019-06-07 13:49:382019-06-07 14:01:24What No One Tells You About Going Under
Eight years ago, while out on a jog near his parents’ house in the days before Christmas, Tom Dixon, a pre-med student at the University of Pennsylvania, was struck by a car. Waking up in the hospital, Dixon was told that he suffered a brain injury and would have permanent episodic memory loss. “I tell people it was a day I’ll never remember and a date I’ll never forget,” he says.
Dixon was told by his doctor that he would need a notepad to record details: what he had eaten during the day, who he had spoken to, what plans he had made. The idea struck him as archaic. “I said, ‘God no, I have a computer in my pocket. Let me do what I’ve been doing since late middle school, when I got my first cellphone.’” Dixon began augmenting his memory loss with his smartphone and computer. A few years ago, while working on a masters degree at Temple University in psychology, he decided to make an app that could do his remembering for him. He called it ME.mory.
The app, which has a few thousand beta users from Somalia to Spain and is due for public release in 2019, says Dixon, allows users to record a “digital memory,” each one searchable and organized by date. Users can even attach emotions to the notes, to help them recall the memories better (it is currently being retooled and will be available to new users by the second quarter of 2019). “Who are we but our past moments?” Dixon says. “We like to think we are carefree at any given moment but we need a sense of direction, a sense of purpose.”
Traumatic brain injuries (TBI) constitute a major cause of disability and death in the U.S. It is thought that 1.7 million Americans experience TBI annually and about 2% of the U.S. population live with some kind of TBI-related disability. Auto accidents are the third leading cause of TBI among all age groups, according to the Centers for Disease Control and Prevention. Due to the sheer scope of TBI cases, it has been referred to as the “silent epidemic.” Though awareness of TBIs have increased over the years, with public attention focused on football-related concussions and war veteran head injuries, it is still relatively poorly understood by medicine. We caught up with Dixon, 34, to hear about his experiences living with a TBI-related disability and how, through embracing technology, he has been able to adapt and thrive.
Dixon was told by his doctor that he would need a notepad to record details… The idea struck him as archaic. “I said, ‘God no, I have a computer in my pocket.’”
What was your rehabilitation experience like following your accident?
I was in an ICU for a week and a half. I had intensive inpatient rehabilitation through Moss Rehab’s Traumatic Brain Injury Program. They’re famous for it. After a bit of time with them I went into outpatient treatment. I qualified for funding for extended services a year and a half later, also through Moss. Speech therapy, occupational therapy, physical therapy. Speech therapy relates more to how you think through issues and problems, how you would tackle something confidently, how you process thoughts. Occupational therapy is more about proving you can “do things”: get from one location to another, cook a meal by yourself, use your bank account, etc. It all made a big difference. They helped me change my career focus from psychiatry to educational psychology. I got my masters in that in 2014, entirely after my injury.
What was your memory like during this time?
I had pretty severe memory loss at the beginning, much more than now. There is a recovery window where you regain a bit of functioning. They put me under with medications to give my brain a chance to heal. Initially, when people would explain what had happened to me, all I said was, “Wow.” There was a huge initial period where my family had to be convinced that how I was proceeding was typical for someone with an injury like mine. I had a notepad by my bed that said, “You were hit by a car. You’re in recovery. Your parents will be here at 4 o’clock.” After that I went through the rehab stuff.
Initially, when people would explain what had happened to me, all I said was, “Wow.”
What is the extent of your memory loss now?
Let me ask you: what did you eat for lunch yesterday?
On my own, I can’t tell you. That gives you some extent of my episodic memory loss.
No matter how hard you try?
It’s definitely not a matter of effort. This is where we need to be mindful of what is the overlap between memory and logic. If I start telling you I did not eat this thing, that would be using logic because I know the things I don’t eat typically. The sense of who I am has remained. Also if I know I was in this area of the city, I probably wasn’t eating, say, Chinese food. But no matter how hard I try, I don’t know for sure. Even for last night’s dinner I don’t know.
A look at Me.mory, Dixon’s upcoming app for people with traumatic brain injuries and memory loss.
Is your brain still in recovery?
The window, they say, is six months to two years for quote-unquote recovery. It’s been a long time since then, getting closer to a decade now. Recovery is done. The reason I say quote-unquote is because I take a strong opinion–and many others in the brain injury community do as well–that there is no such thing as recovery. There is a period where you do regain some functioning. But I’ve lost this very huge part of my organic memory ability. It’s perhaps even “invisible disability” discrimination to talk about brain injury with recovery; if I lost my arm would people say to me, “You’ve recovered?” No. They would say I’ve adapted and learned strategies. Why do we say, because it’s an invisible disability, that it’s recovery rather than adaptation?
For years, I was using Twitter. I had a private account. I tweeted for myself to myself; I had no followers. That was my memory, a Twitter memory.
What has your adaptation process been like?
For years, I was using Twitter. I had a private account. I tweeted for myself to myself; I had no followers. That was my memory, a Twitter memory. If you lose your phone you don’t lose your Twitter account. But it was hard to search my own memories. I would have to download my Twitter archive onto a laptop and then I would have to search. That’s something I needed with ME.mory, that functionality to be able to search my memory on the go. I was doing the Twitter thing for years. Even into graduate school. I got into Temple for my masters in 2012. I was even doing it when I went into this idea incubator they had there. I walked in and said, “I have an idea for an app.” They put me in touch with the developer.
What’s the difference between your app and, say, the Notes app on my Iphone?
What do this robot and Thomas Dixon have in common? They both store their memories digitally.
My entire ME.mory is searched when I use the search feature, then it gives all the search words I’m looking for in reverse order, with the most recent at the top. It’ll automatically highlight for me in the entry where the word is. ME.mory will give statistics like, “Hey, you mention coffee more in the morning than the afternoon. I guess you drink coffee more in the morning.” Or, “Look you haven’t seen this friend much this year compared to last.” Things like that give me all sorts of data that I can make inferences from. The graphs let me see if changes are happening overtime. I also get graphs related to what time of the day I’ve mentioned something, split into four time periods.
How many times a day do you post?
Sometimes I don’t have much going on so there’s nothing to note or there’s too much going on so I have no time to. Looking at my app right now, I have an average from the last five days of three posts per day. I haven’t made any today. Yesterday I made six, partly because I was seeing old friends. Sometimes I hand people my phone and ask them to write things in my ME.mory. It’s been cool to show them years later what they wrote, then we talk about that experience. Yesterday my friend wrote about the night we were having, playing retro video games.
When you tell people you can’t remember your life, they almost always say, “I’m sorry.” Then you tell them you have a digital memory and they almost always say, “That’s awesome.”
What are some of your future plans?
There’s a book I’ve wanted to publish. It’s already written and twice edited. My experience with my disability and inventing ME.mory is really captured in the title I want to use: I’m Sorry, That’s Awesome. When you tell people you can’t remember your life, they almost always say, “I’m sorry.” Then you tell them you have a digital memory and they almost always say, “That’s awesome.” These are the actual words. I heard them a few times last night and will hear them tonight at my high school reunion.
How have users responded to the app?
When you release something people decide how they’re going to use it. You can tell them how but people just end up running with it, like what I did with Twitter. We’re seeing the same with ME.mory. Parents are recording their children’s life; caretakers are recording lives of the elderly; patients are using it as an injury log to bring up with their doctor later, which I do actually. I take seizure medication and in the doctor’s office I will pull up all the entries with the word seizure to show the doctor. I don’t need to prepare any notes before the appointment.
People act like memory loss is only for one small minority but it’s all of us… We all have severe memory loss.
How do you think about memory and memory loss?
We all have severe memory loss. If I ask you what you had today last year for lunch you don’t know. You forget the overwhelming majority of your life. People act like memory loss is only for one small minority but it’s all of us. We’re already making tech reminders all the time. I’ve just readjusted how we use those technologies for my own purposes. I’ll make calendar alerts for stuff that aren’t appointments, stuff that I want to keep in mind generally as time passes. I’ll email myself things to do that are not urgent. I rely more heavily on texts. But I’ll also get on a call like this then update my memory later about the call. Those are a number of workarounds that a lot of people are doing some version of already. I think of memory loss as a universal issue.
https://folks.pillpack.com/wp-content/uploads/2018/12/Screenshot-2018-12-21-10.25.25.png12021602Brent Cranehttp://folks.pillpack.com/wpinhere/wp-content/uploads/2017/03/folks-logo-1.pngBrent Crane2018-12-21 10:48:472019-01-22 11:32:24The Man With A Digital Memory
Emily Eifler leads a beautiful life. Every morning, she wakes up in San Francisco’s Twin Peaks next to her husband of 12 years, thanks to the caterwauling alarm of their alarm clock cat, who rigorously needs petting at dawn. She lives in a tiny, picturesque little house, with a bright and fragrant garden, where she sits, stroking her other cat. As she does so, she eats toast, butter, and honey, while reading comics — fantasy comics like Kieron Gillen’s The Wicked + The Divine are her favorite. When she’s done, she practices her yoga, and maybe does some dancing on the patio. Then she goes to work.
“I just draw on my head.”
A tatterdemalion of bright textures and clashing colors, Emily bikes to her lab in SoHo. She makes for a morning-brightening sight: her head is half shaved, she wears rainbow wool dresses and silk scarves over leopard print leggings, and her eyebrows are often smeared with streaks of literal magic marker. “I don’t mess with lipstick or foundation, no mascara or traditional applications of eyeliner. No contouring or cover up or highlighter,” Emily says. “I just draw on my head.”
It works. She looks like an awesome video game character, which is sort of appropriate, because Emily is a respected VR researcher, who spends her professional days working on the problem of how people perceive and integrate into the virtual world.
For almost a year, Emily has been posting a spherical 360-degree-video on her personal blog every day. These spherical videos are specifically important to Emily. She lovingly describes them as “little ladlefuls of space-time,” a way for her to externalize a moment into a virtual room she can explore at a later time. “My videos are a way for me to construct memories,” Emily says. That’s important for her. She can’t form memories like other people can. Whether it takes weeks, months or years, Emily’s chronic amnesia always sweeps them away.
On her 10th birthday, Emily’s family and friends went to a local hotel pool for a swim party. Invisible amongst the squealing and splashing–except, perhaps, in the flickering of the candles on her birthday cake–a carbon monoxide and chlorine gas leak unevenly filled the area. Everyone was poisoned, but Emily and her mother, a doctor, were affected worst. Emily’s mother experienced stroke-like side effects that practically paralyzed her with a crippling migraine for the next eight years. As for Emily, she developed what she calls “a grab bag of neurological issues, from Alice in Wonderland syndrome to post-traumatic stress disorder.”
Like her mother, Emily gets chronic migraines, which she treats with magnesium supplements and medical marijuana. (“It’s a miracle drug,” she says. “They say too much pot makes you a slacker, but I only have a full-time job because of medical marijuana.”) She suffers from periodic and debilitating trembling attacks, where her entire body feels set to shake itself apart. Her body’s ability to accurately tell where it is in space, called proprioception, is also severely limited, causing significant balance issues and forcing Emily to walk with a cane. But this condition actually makes Emily uniquely suited to tackling how a person is supposed to physically sense where they are within a virtual world when they can see and hear it, but not feel it. Non-virtually, that’s a problem Emily’s been dealing with ever since she was 10.
Curiously, what many people might find the most horrifying side effect of Emily’s brain injury is the one which bothers her the least: after a few months, she forgets almost everything. “I can’t really remember anything after the age of thirteen,” she says. If what happened was particularly meaningful, Emily will remember the fact of it afterwards, but not the details, or any of the first-person narrative. For example, Emily says that she knows that she once went to China on a trip, but she has no memory of anything that happened there. She doesn’t remember what she wanted to be when she was growing up, or why she went to college.
I miss my brother, even though he died a long time ago. I don’t know what I miss about him, but I do.
Sometimes, not being able to remember is as tragic as people, largely informed by movies like Christopher Nolan’s Memento, might expect. Years ago, Emily’s older brother Ryan died. Emily knows this, it’s a fact, but she can’t remember what Ryan’s face looked like, what happened on the day he died, or really almost anything about him. It’s just not there. The only thing that is there is sadness. “I still cry about it sometimes,” Emily says. “I miss my brother, even though he died a long time ago. I don’t know what I miss about him, but I do. Trauma is sticky. Those emotions are still stored in my body; my body still recognizes the welling of my heart.”
Beautiful with a fashion sense all her own.
But there’s also moments of great beauty in constant forgetting. Emily’s husband, Steve, who remembers things in “Technicolor detail,” is someone she says she is “constantly falling in love with” all over again. Because she can’t remember their life together, he lovingly describes it to her in newsletters, meant just for her. Through Steve, Emily is able to experience, again and again, the moments of passion, friendship, silliness, and tenderness that have intertwined them: their first date, their first kiss, the day they moved in together, the day they adopted their cats, and so on. Steve just never gets old for Emily. “Yesterday, he was in the living room, reheating food, while doing a silly dance and some weird voice,” she says. “I just sat there, thinking: he’s awesome, I love him so much. But I know I’m not going to remember this, which makes me enjoy it so much more in the moment. I can’t be nostalgic in the future. I have to be nostalgic for right now.”
I can’t be nostalgic in the future. I have to be nostalgic for right now.
One thing does concern Emily about her future. She and Steve have started talking about adding a baby to their happy household of buttered toast and cats. “We both want to have kids, but what does that mean? I’m going to forget their whole lives.” But ultimately, Emily and Steve don’t think it has to be a deal breaker. Even without a long-term memory, they know that Emily can be a good mother… the same way she is a great wife, a caring lover, a hilarious friend, a talented artist, a dutiful daughter, a respected professional, and more.
“When people first meet me, they’re so aghast that I don’t have a first-person narrative memory,” says Emily. “They think that if it disappeared, they’d disappear with it. But I’m still the same person: I didn’t lose my identity just because I lost my memory.” After all, everyone forgets. Emily just knows better than the rest of us that being good at remembering doesn’t have much to do with the kind of person you ultimately are.
https://folks.pillpack.com/wp-content/uploads/2017/03/emilyemily.jpg12441737John Brownleehttp://folks.pillpack.com/wpinhere/wp-content/uploads/2017/03/folks-logo-1.pngJohn Brownlee2016-08-03 09:00:342019-05-28 15:26:20Ladlefuls Of Space-Time
Folks is an online magazine dedicated to telling the stories of remarkable people who refuse to be defined by their health issues. By sharing the experiences of these individuals, we hope to change people’s notions about what it means to be ‘normal’.
Editorially independent, Folks is sponsored and published by PillPack. Part of our mission at PillPack is to create healthcare experiences that empower people. We don’t believe people are defined by their conditions. We pay our contributors, and we don’t sell advertising.