Guest Post: Just resolving to “get well” doesn’t cut it. What does?

This post by guest blogger Jennifer Crystal has also appeared here. Jennifer is an alum of NeuWrite Boston.

Last year at this time, I wrote a post about New Year’s being a sort of mockery for patients with chronic illness: each day of suffering is much like the one before, and we cannot simply resolve to get well with the change of the calendar, the way we can resolve to lose weight or drink less coffee. So much of our convalescence is arbitrary.

For Lymies especially, we often can’t say how our energy will be one day to the next; even taking all of our medication correctly can make us feel worse before better. Spirochetes, like cancer cells, can replicate and burrow deep within our bodies and brains, despite our best efforts to fight them. Despite our will to stop them. One of the most frustrating aspects of living with chronic illness is not being able to control what is happening to your own body.

When I first got sick, I vacillated between the classic fight or flight responses to my situation. At first I thought I could ward off reality with a “mind-over-matter” mentality. I insisted on working at summer camp despite the fact that I had a serious case of mono; I drove back to Colorado after camp, willing myself to be well enough to ski that season; years later, after long-term treatment for tick-borne diseases, I moved to Vermont as soon as I got my PICC line out, sure that my determination would be enough to see me through any hiccups I encountered.

Each of these decisions landed me back in bed, sicker than before. Resolve and will and determination and a positive attitude were not enough to combat an aggressive physical infection.

Other times, when frustration got the best of me, I’d throw up my hands and think, what does it matter anyway? Why not stay up so late that I become too agitated to sleep, read and write so much that my neurological symptoms flare with electric intensity, skip my nap to have a bleary-eyed visit with a friend? I remember telling one friend, “Sometimes I feel like my life is a movie. What will happen next?” I figured that even if I didn’t take care of myself, even if I pushed myself beyond my limits, eventually it would have to work out, right?

Wrong. There was no script calling for someone or something to swoop in and save me. My life was not scheduled to get better in a neat little 120-minute package. I was the one writing the script. It was up to me to decide if eventually things would work out.

Of course, there were parts of my illness that I could not control; there were the actual bacterial and parasitic infections that could only be treated with intense antibiotic, anti-malarial and adjunct therapies.

But there was another part that was up to me. After my serious relapse in 2007—following the failed move to Vermont—a friend told me that he was concerned about a pattern he’d noticed since we were in college: a pattern of me pushing myself past my limits, not giving myself adequate time to rest, ignoring or perhaps not seeing warning signs until I had already crashed. “Going back to Vermont—or anywhere—without dealing with these issues would be a mistake,” he cautioned.

That was enough of a wake up call for me to really think about they way I treated myself. For so long, I’d fought my body when it couldn’t do what I wanted it to do. I got angry and frustrated when I wanted to ski or climb a flight of stairs or sit up for a meal but couldn’t. I berated myself for not getting better fast enough. My mind and body were forever battling each other. If I intended to win the war, I had to stop that pattern.

Two members of my medical team introduced me to the concept of cognitive behavioral therapy: recognizing patterns and behaviors that were causing myself harm, and training or retraining myself to act differently in those situations. For example, to help combat my insomnia, my sleep doctor recommended that I start going to bed at exactly the same time each night; that I use my bed only for sleep, so my brain would not associate it with activities like reading or watching TV; that I spend the hour before bed away from screens, listening to quiet music and doing deep breathing exercises to help myself relax. I could not control the neurological firestorm that Lyme was causing in my brain, but I could reinforce with good behavior the medications and treatments that were targeting that physical problem.

The same theory applied for the way I scheduled my day, the way I handled stress, and the way I set limits and boundaries for myself. It wasn’t easy. There were setbacks and slip-ups. It took a great deal of discipline to politely excuse myself for a nap at the same time each afternoon; to set time limits for talking on the phone; to walk away from my favorite TV show because it was making my neurological symptoms flare. I didn’t want to do any of those things, but I started to understand that I had to do them if I wanted to get well.

Over time, the new habits I created became routine. Taking proper care of myself became my top priority, and giving my health that significance made it easy to keep up the practice. Soon my body and brain were not arguing, but working as a team to get well. I started to get better much faster once my body realized that I was going to care for it properly, that I was in this fight with it, not against it.

We Lymies can’t control the spirochetes, but we can control ourselves. We can control the decisions we make and the habits we create that can help move us towards health. We can’t resolve to get well in the new year, but we can promise to take the best care of ourselves possible, to help achieve that end goal of restored health.

Lyme survivor Jennifer Crystal is pursuing a Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at jencrystal5678@gmail.com.

Simple Science: The Neuroscience of Memories

This post is the first in our Simple Science Descriptions series of pieces written with the Up-Goer Five Text Editor restricting writers to the ten hundred most used words in English. It's harder than you might think! Send your entries (preferably under 350 words) to jeanyang [at] mit [dot] edu.

-

I study the brain. When you think about it, the brain has made possible everything ever--from music to computers to hospitals, from kisses to high-fives to tears.

However, to me, there is one thing that the brain does that is the most amazing act in the world, and yet it happens every single day just in between your ears: the art of memory. When you think back to your first date, what you had for lunch today, or who you were as a child, you're actually cutting through time and feeling everything that makes memory so important, so story-like. It is who you are and what gives you a sense of "you" as the days and months and years go by. It is what goes away when some brain pieces break down and become broken thoughts.

Your brain is actually very much like the brain of other animals, such as the small, cat-hating, fast-moving animals that so often come out to eat at night and scare people to jump onto their chairs. To study the tiny pieces of the brain that make memory possible, I put on a clean, white, almost dress-like long-armed shirt and play with these animals each day. While doing so, I also can make their brain cells to respond light. Send some light into the brain and, as if part of a movie that you know was a lot of money to make, you can now control thoughts with flashes of light. My work can also take this a step further: it is now possible to find out which brain cells are holding on to a single memory, to make only those cells respond to light, and then to use the very same light to turn memories on or off, or even make new ones! Imagine being able to turn off memories that sometimes force people into a never-ending, deep-blue state of pain on the inside, or to turn on the kind of memories that remind us how happy of a thing life can be. So far, this is only in animals but, after all, we are animals too, just ones with bigger brains that know how to read and write and reason.

This is my work, and the age of memory control is here.

- Steve Ramirez, Ph.D. student in Neuroscience

Simple Science: Busy Doctors Make Less Money for Their Hospital

This post is the first in our Simple Science Descriptions series of pieces written with the Up-Goer Five Text Editor restricting writers to the ten hundred most used words in English. It's harder than you might think! Send your entries (preferably under 350 words) to jeanyang [at] mit [dot] edu.

--

Being sick can cause you to spend a lot of money on the doctor and the hospital. The money you spend is not completely set by how sick you are. When your doctor is not tired, you may need to spend more money than if your doctor is tired. A tired doctor often writes less. When a doctor writes more, you often must spend more. This is because the stuff that a doctor writes is used to figure out how much you must spend. If doctors look at the stuff they did when they were tired at a time at which they are not tired, their hospitals may make more money. So, when a doctor has a lot of work, the hospital may get less money from each person that the doctor sees that day.

- Adam Powell, Ph.D.
President, Payer+Provider Syndicate

This is based on Dr. Powell's article, Physician Workload and Hospital Reimbursement: Overworked Physicians Generate Less Revenue per Patient.

Simple Science: Social Robotics

This post is the first in our Simple Science Descriptions series of pieces written with the Up-Goer Five Text Editor restricting writers to the ten hundred most used words in English. It's harder than you might think! Send your entries (preferably under 350 words) to jeanyang [at] mit [dot] edu.

--

Humans are very good at some things, like recognizing things and using words. Computers are very good at other things, like working very fast with large numbers. I try to make the computers good at the things that humans are good at, like talking to and understanding people.

I build computers with bodies that can see, hear, and move around. Some of these things are already in the world - they build cars or clean your floor. But they aren't very good at working with people, because they don't understand how people act.

I try to make these seeing, hearing, moving computers better at dealing with humans by helping them understand people's voices and faces and also by making the computers act and move in ways that make people feel safe. This has many practical uses, because these computers can then do things that humans had to do before, even if they didn't want to (like making the same things over and over again all day).

Seeing, hearing, and understanding other people is very hard, even though it seems easy for us. So my work can also help us understand how humans do these things so easily by letting us check whether our ideas about how humans hear, see, and understand others are right. We make a guess about how it works in humans, then check to see if our guess is right by making the computer do what we think humans do and seeing if the computers act the way humans do.

- Sam Spaulding, graduate student

Simple Science: Formal Models in System Biology

This is a post in our Simple Science Descriptions series of pieces written with the Up-Goer Five Text Editor restricting writers to the ten hundred most used words in English. It's harder than you might think! Send your entries (preferably under 350 words) to jeanyang [at] mit [dot] edu.

--

Life is hard to understand. Animals and other living things are made of parts which all start the same, but become different as they grow. They do this by sending signs to one another. The order in which these signs are felt changes their meaning and can change how the parts grow. When the signs break down, the parts don't grow right, and this can make people sick.
We are getting better at finding the signs, but understanding what happens when different signs arrive at the same time, and fight is still hard. I use computers to build an understanding of these relationships in growing animals. The computer allows us to study "what-if" questions, check with what we already know, and gives us new ideas. Sometimes they also need us to find new ways to use the computer to ask these questions.  By doing my work I hope  we can better fight the things which make us all sick and better understand life.

- Dr. Ben Hall, Microsoft Research

Simple Science: Research on Multicore Memory Systems

This is a post in our Simple Science Descriptions series of pieces written with the Up-Goer Five Text Editor restricting writers to the ten hundred most used words in English. It's harder than you might think! Send your entries (preferably under 350 words) to jeanyang [at] mit [dot] edu.

--

My work is about how to make computers use space well. All computers have a lot of space for work that takes a long time to get to. Computers also have other space that is fast to get to, but there isn't much of it. Most of the stuff people do with computers doesn't fit in the fast space, so the computer has to decide what to keep in the fast space and what to put in the slow space. This is hard to do because the computer just follows orders and doesn't know what the person using the computer really wants. So it has to guess. Even worse, the person using the computer often doesn't exactly know what they want, so it's really left to the computer to guess!

In new computers, this is harder because a new computer is really several computers in one, and the fast space for one computer will not be quite so fast for the rest of the computers. This means that its not enough to decide just what to keep in the fast space, but the computer should also decide where to put things. It is even harder because it turns out that it is often a good idea to take space from one computer and give it to another. But you want to make sure you don't take too much from one computer and slow it down too much.  Once you've done that, you need to make sure all of the computers agree about where things go just in case they happen to work on the same stuff.

All of these different concerns make it a very hard problem, and the best we can hope for is to get close to the best answer. My job is to build computers that let us do this at all, and then come up with ways to get closer to the best answer. I also try to do this in ways that make sense for some deep reason, instead of ways that seem to work but we don't understand and may not work always.

- Nathan Beckmann, Ph.D. student in Computer Science