Naked

With CRT’s 4-week criteria having run its course I am now just over a week into the second of the two 12-session therapy studies. Exposure Therapy lays out everything that you dont want to touch. Your fears are just there – naked – and you are expected to stand them down. To put it lightly its hard work. To get a little more in-depth with description its both exhilarating and terrifying, anxiety-provoking and stress-reducing, disorder-revealing and rationality-impelling all rolled into a plate of pancakes. With syrup and margarine the stack of three buttermilk griddle drool-enticers sat in front of me on a clean white plate at breakfast this morning.

Dr. Cristopane spread out her notes on the table across from me as we waited for the food to arrive. “What would you say your anxiety level is right now?” she asks in all seriousness. Most of the time I don’t know. I have a SUDS (subjective units of distress scale) list of things I associate with different levels of anxiety in front of me for help but its still tricky. I will generally either do something or I won’t and I very rarely exhibit outward expressions of anxiety. I tell her that I’m probably a 7. To me that is the equivalent of being on 42nd street in Manhattan with crowds, having an argument with a friend, or getting called into team meeting on the unit. My list is actually more like a level of difficulty in making the choice to do something sort of scale. Once I have decided on a course of action the actual movement it consists of isn’t so hard.

As I alternately munched on my pancakes and sipped the iced apple juice to my right Dr. Cristopane continued to ask how I was feeling and discuss the various resistances and disturbances of demeanor that came up throughout the meal. The pancake breakfast was a level 8 on my pre-built hierarchy of fear foods. In general my hierarchy primarily consists of carb-based items. For some reason they seem to be the things that I not only like the most, bagels, muffins, pastas, pancakes, etc, but also the main thing I have cut out of my diet through the eating disorder. Its hard enough for me to consume one carb component at a meal and two is virtually unthinkable when I’m eating out by myself. It was originally VERY difficult to admit that I even had issues with those foods to Dr. Cristopane because I knew that I would be faced with them if I did. I am here for a reason though, and, if I can’t come head to head with these things within these walls then I know I will have that much more of a hard time once I get home. If I don’t before then I don’t know if I ever will.

I mopped up a bit more syrup with the last bite of golden-brown goodness and smiled. Tasty, filling, and satisfying in more ways than one. The meal took effort but it was entirely worth it. Exposure is very much a roller-coaster. As Lia says: “If how helpful it is is measured by how shitty it is then it’s extremely helpful.”

Cheers to that!

Vocal Censorship

“She almost looks normal, doesn’t she?” Hank, Diane’s husband didn’t even try to keep his voice down as he addressed the oldest of their 6 children. The boy nodded slightly, with a hint of embarrassment in his cheeks, as his father continued to voice his train of thought. “She doesn’t look so…Well, she’s got some meat on her bones anyways; some umph to her face.” He turned to look at his object of description. Diane was across the room getting her evening vital signs done in the little red chair next to the nurse’s station. Her eyes didn’t reflect whether she had heard her husbands comments or not and, although I don’t think he particularly meant for her to catch wind of them, He hadn’t censored his observations either.

Open mouth - insert foot...

So many people it seems just don’t know what to say to a person recovering from and eating disorder. Then again there is no right thing to say because even the basic “you look so healthy” can be taken the wrong way. I don’t know when exactly the term “healthy” started translating into “fat” but, somewhere along the line it morphed in our brains to take the shape pf something undesirable. Our friends and family just want to support us, and they really do mean well, but when one of them jokes over the phone “So, you getting chubby?” somehow the laughter is lost.

Sometimes we are able to brush it off. Sometimes it can take a little while and some contemplative processing of the situation. Sometimes, too, it just depends on where our heads are at in order to evoke some positivity from the compliment. It is inevitable though; these comments will happen. Just the other day a man, talking to one of the patients out in the fresh air park, patted his own tummy and exclaimed with a grin: “They’re fattening you up, huh?” He was kidding around. He didn’t know the reason she was here at the institute. A comment like that though could be a potential major setback.

Amy, who has recently reached her 90%, went shopping with her mom and sister the other day. Amidst the racks of colorful fall clothes and warmer winter jackets they chatted ideally. Amy doesn’t remember what the conversation was about though. What stands out for her was her sister exclaiming: “Hey! You have your butt back!” and her mom following that up with: “That reminds me; we should get you a few new bras too, now that you can fit into one. Amy doesn’t like that those were the words for the day that stood out for her almost as much as she doesn’t like that they were said in the first place. Its so easy to just wish that everyone else had a little more sensitivity to the situation and vocal censorship while simultaneously wishing we ourselves could grow a thicker skin. Even that common phrase though translates differently for us. Thinking of growing a thicker skin denotes the gaining of something in our minds and gaining always translates to a weight issue.

All of this is why longer treatment for an eating disorder, to be in recovery, doesn’t mean just putting on the bodyweight you lost. In fact, most people say thats the easy part. The real challenge comes after the physical gain; its about really changing the way we think. Restructuring a mind is a difficult thing in a healthy person, let alone one who, at a diminished weight has lost brain matter and the ability to focus through starvation. There is pretty much no sense in trying to break through in therapy until the person has put on enough weight to really start thinking clearly.

All of this is why I’m here though. They are constantly trying to find new and improved ways in which to fight anorexia. Thats part of the drive for me to get better myself – being able to help in the success ratio for the disorder with the highest mortality rate on record. I’m using my experience to help make things better and that makes in one of the most important jobs I have ever done. Another reason to feel proud.

Yes, Stomach, I hear you

Score one point for getting through things that I didn’t want to do. My tally must be pretty high right now but this time I think I will count double points for the added factor of having to do it 2 days in a row. These back to back trials of perseverance that I refer to are the long-awaited research meal days. I was too anxiety-ridden to write about it while in the midst of the experiment but, now that I can breathe with the assuredness of it being over, hindsight has again set my thoughts in motion. part of me, the forgiving part, wants to shrug and chalk it up to just having been an experience. The other part, however, would love to riddle the telling of the last 2 days with some very colorful language. I think I’ll try to find a happy medium.

The anticipation on Tuesday, the morning of reasearch meal #1, was quickly dropping like a fog over my world. When I sat down to breakfast I knew what to expect on my measly tray – two 4 oz. apple juices, a yogurt and an apple. Everyone else got the pancakes we had been asking for fervently through the last two months. Balls. I missed out on that one. I was told that they were really good though. After that I was okay until about 9:30 or so…until the hunger started to claw its way into my consciousness. Then it was all over. I couldn’t think about anything else except the pending lunch. The others did their best to help distract me but the anxiety grew to an all-consuming high. Its strange to think that I used to eat so little when my body craves so desperately now. At this point there is no denying what it wants. No confusion.

Finally, just before noon, one of the research assistants came up to get me. I followed her, in her white lab coat, downstairs and back to the same tiny room I had done both the exercise study and the sweetener test in. Everything was the same except this time there was a little round table with a plastic tablecloth ala “Lady and the Tramp” in the middle of the room. She sat on the bed while I sat at the table and in front of me was placed a sheet with a 1-10 scale and varying degrees of anxiety provoking situations listed throughout as a guide. We sat in silence for a full 3 minutes while I was instructed to think about the upcoming meal. At every one minute interval she asked me to rate my anxiety level on the scale.

Before the meal came I was repeatedly scoring quite high. I was anxious because I just wanted to eat. There were no guidelines as to how much had to be eaten. It was just whatever I wanted to do while the video camera in the corner taped my actions and her voice buzzed in over the monitor to periodically rate my levels. The tray that was finally placed in front of me had only a few items on it but they were large. I was suddenly staring at a large bowl of regular potato chips, an 8 oz. bottle of water, a family-size tube of real mayo, and a footlong turkey and swiss Subway sandwich on wheat. Other than the meat and cheese there was only lettuce and tomato on the sandwich.

That was it. Once I got the go-ahead I dug in. That first day it was excellent but I think I would have eaten just about anything they had put in front of me. I only ate 2 or 3 chips but I got through almost all of the sub, eating all of it’s insides and leaving about 1/3 of the bread; all the while my anxiety slowly decreasing. It felt great to just get some substance. After that they had some paperwork for me to fill out, some questions to answer, and then I could go about the rest of my afternoon as usual. That didn’t stop me, though, from dreading to have to do it all again the next day.

When I awoke the next morning I was calmer. The exact same test two days in a row so I knew what to expect. I was armed with knowledge. Then they threw a wrench in my gears. I was hungry going into breakfast and actually looking forward to the small amount of bulk I would get from the meal. Something, anything, to fill me up just a little. When I got in the dining room and saw my tray my jaw dropped. Apparently all I was to consume today was one lowly toasted English muffin and a 4 oz. container of apple juice. I grudgingly ate, trying to make it last as long as possible, and then spent the remaining time at the table not only hungry and anxious but pissed off as well. No one else who had done the same study before had gotten the English muffin version of research breakfast.

I got through it though. Lunch and a twin meal to the previous day was placed in front of me. I ate, with less anxiety this second go-round. I’m going to have to ask at research group next week what exactly they are looking for in this study but, for now, I’m okay. For now I can go back to enjoying my normal size expected meals.

At least until I have the third research meal day just before I head home.

Hunger Games

Today is the day! I just made it this morning with the scale balancing right at the 3/4 pound gain that has occupied my line of vision for the past 2 weeks. Not only am I not RTU for the weekend but I am finally at my 85%. The next step is to put in a privilege request form to move up to level 4b so I can roam the building at my leisure. I could, potentially, be annoyed that I have to wait through the Labor Day holiday weekend before they approve the request at the next staff team meeting on Tuesday…but I’m just not feelin’ it. I’m too happy that I got to where I wanted for so long to be at to let it frustrate me.

It was before lunch, only a few short hours since I had been weighed and realized my goal in the scale clicks, when Dr. G pulled me aside. With 85% comes the two major therapy studies that Columbia is doing right now: exposure and CRT. There are 4 weeks of each, 12 sessions apiece and each person eligible does both. Its a random draw as to which one you start with but I’ve got my fingers crossed for exposure.

First things first though. I won’t know which will be kicking me off until I’ve done whats known as research lunch for two days in a row. From what I’ve seen and the details I have been told by other patients who have already been through it I am curiously anxious to start. The breakfast and morning activities (or lack there of) prior to research lunch has me a little nervous towards my mixed emotions.

Its all very moderated so that each person doing the meal has the exact same thing for the breakfast leading up and the standard that they serve is much less than what our bodies are used to having. Every person I have seen with the diminished breakfast on their chosen research day ambles around the whole morning try their darndest to not gripe too much about the every persistent stomach pains growling audibly.

Aside from the miniscule meal, in order to keep everyone’s physical exertion and intake in check, there is no morning coffee allowed. So there goes the once daily caffeine boost we are each allowed and then we also omit the 10am morning Ensure as well. It may seem that being on so many calories each day would cause us to kneel and thank the ceiling at the cutback but thats just not so. All there will be is annoyance and hunger, hunger, hunger. We need all of those calories right now! Our bodies want them. They crave them! To top it off, on research lunch day, we are RTU till the afternoon meal is over. That means no fresh air, no trips to the store, no nuthin’.

Thankfully all of this only goes until 1:30 in the afternoon and, with my newly approved 4b status I already know where 2 pm will find me. I’ll be sitting in the upstairs cafe with my Boston Globe Sunday crossword book lounging in full relaxation mode. Oh, and one more thing, my nice caramel-colored steaming cup of coffee will be my teatime guest of honor.

Earning the goods

I elevator down with Clara in her stiff white lab coat for the next research study on the agenda. We floor-hop for a minute, letting others on and off, before deboarding to head to the same room that the sweetener study was held in. Mostly the room hadn’t changed still housing the same little bed, same cameras on the walls, same desk with the same laptop computer on it, except this time there was a large black treadmill in one corner. I had to stop myself from scanning the paneled ceiling for a water bottle drip within the confines of the human hamster cage.

I sat down at the desk and was given a two page questionnaire to help pinpoint different levels of emotion I might be feeling at the moment. Before shutting the door behind her as she exited the room Clara placed the same little call button as last time to my right so I could notify her when I was finished. Not being particularly angry, depressed, excited or overly emotional in any other way I flew through the paperwork and started my stint on the laptop. This study also involved the repeated pressing of buttons in order to earn rewards but the incentive was different this time. This one was called the “work for exercise” study.

I couldn’t help thinking in the back of my mind that it was silly for a person to be willing to sit and push a button for upwards of 40 minutes, switching hands until both wrists hurt, just for a maximum of 30 minutes of slow walking on a treadmill. I understand how this would be a totally fine reward for a person who has an exercise addiction, which many people with eating disorders do have. However, I couldn’t keep my mind from ruminating on the absurdity of that reward anyways. If we didn’t have fresh air time that we were able to walk around during, and had to remain sedentary on a constant basis like I did at Remuda, that tiny bit of movement may have been seen as much more desirable. Heck, who knows, I may have even worked the full 40 minutes for the half hour trade.

Apparently I wasn’t the only one who saw the treadmill time as something not worth working for. They had added in a second reward of cash that I could press the button to earn. The maximum of that was $30 and it was received at the end of the session. As the exercise minutes accumulated 3 at a time, the money built $3 at a time as well and at the end of each earning I could decide which of those two things I wanted to work for during the next session.

I picked the cash. Of course I picked to work for the cash. If the treadmill had been the only reward the test to see how hard I would work for it’s company would have been over before I laid one finger on the button. I clicked away for about 12 minutes, switching hands, switching fingers, and eventually stopped when my wrists started getting sore. My need to do artwork pain-free outweighed my desire for more money. If I had kept it up, going for the whole $30, I doubt I would have been able to draw anything for the rest of the afternoon, or even write this entry now, without feeling the repercussions.

In the end I wound up with $15 which i figured would buy me about 3 weeks worth of morning coffee from the upstairs cafe. All in all it was a satisfying experience. I filled out one more short questionnaire about my moods and anxiety levels at that particular moment, rang my little buzzer, and sat back to wait for Clara’s escort to go upstairs again.

The sweetness (part II)

Flaw number 1 in my coffee sweetener test was that, ever since the caffeine detox I have been trying to keep the intake down to one small cup in the morning. Number 2 was that, not only had I already had the early cup but Fridays, because of Coffee Klatch, I wind up having a little bit more than usual. So, I didn’t really want coffee to begin with when they came to get me for the study at 4 pm. 3 was that they didn’t specify what cup size they would be presenting me with and I was surprised at the large drink placed in front of me when I had expected the smaller size I normally get. Coffee, for me at the small size, is complete with 3 Equals, so thats what I worked to earn even though I didn’t want the coffee to begin with.

Had i known the coffee would be a bigger size the outcome would have definitely been different since that size I will usually put 7 or 8 Equals in. I don’t know if it would have been different in that I wouldn’t have worked for any Equals because, to get 7, was a lot of button pushing for something I didn’t care for at the moment anyways. Or maybe the outcome would have been different in the way that I would have stuck it out and worked for all 7 knowing thats what I would normally put in a cup that size.

I told the lab techs about these contributing factors and sort of felt like I maybe hadn’t provided them with a good enough result template. I guess, though, that there is really no correct or incorrect way to provide our information. I suppose thats the reason behind it being an ongoing study. Well, I did what I could. Hopefully they’ll get some of those result-altering kinks worked out in the future. Who knows. I did my part, it way definitely interesting to say the least, and now thats that.

Positives

I am so very ready to be done with this activity monitor business. The tape holding it to my skin is getting itchy and its a pain in the butt jostling all the wires around every time I change clothes or use the bathroom. I know I’m griping and I only have about 3 hours of its company left but, hey, were supposed to be honest with ourselves here.

Today marks the 3rd day of the 2200 calorie regimine. It also brings with it the onset of my first daily Ensure Plus shake. People keep asking me how I’m doing with the new additions to my menu, whether I’m anxious or might perceive any problems with them, but right now I don’t. Not yet. I try and leave the answer confident but open-ended. Right now I am still hungry between meals which makes acceptance of all of this that much easier. So long as I can continue to not let my mind wander into the zone of food analization I think I will be okay.

In the past, although I always have liked their milk-shakey taste, Ensure drinks have been a source of apprehension for me. Mostly this is due to their presence in my life being a sign of a major change underfoot. Through time and association that is just the weight they have come to hold with me. I do my best to keep a positive attitude through this because my acceptance and continued determination depend on it. I count myself lucky for the ease at which I have had staying in that frame of mind so far but, as much as I would hope, I can’t say for sure that things will continue this way. I suspect there will come a time, as the additions continue, when I’ll be full all the time…but I’m choosing to deal with it as it happens.

For me its been easier to take things as they come both in dealing with anxiety and also with placing trust in the onset of events. When I look to the future, in terms of being able to uphold the lifestyle I am learning here, I don’t know for sure what is going to happen. Its easier for me though to stay determined and upbeat as long as I remember that, although the possibility for just about anything is there, I don’t have to deal with the mights and coulds of it all right now.

So today, yea I’ve got the addition of the first Ensure, but if it helps quell my hunger between breakfast and lunch, then bring it on!

Plugged in

This morning brought with it wires and monitors. I have been hooked up, taped down, and activated in order to participate in the first comparative phase of one of the many studies. The device they have me tethered to really isn’t all that obtrusive. Mildly annoying and slightly awkward at best what it does is monitor movement and activity. The study, which consists of two parts, is one that is exploring the expenditure of energy in a person who is underweight versus a person at at least 90% of their natural body weight. The little tabs and wires I’ve got on will only be with me for 48 hours this time and then again for another 48 much farther into my stay here, once weight stabilization has been reached.

Although the findings from this haven’t begun to get analyzed, being only a year running so far it is still in its baby phases, there are some interesting theories that come from nature behind it. In a natural basic environment history has shown that a person or animal of a low body weight, despite lack of energy, actually moves quite bit more than they do at a higher weight. It would make sense that their lack of food would give their bodies the drive they need to actively seek nourishment. The question is: Is there such a compulsion in eating disordered patients? How do we move and when?

If bulimic the drive to find food would presumably be there due to the binge aspect of the illness, but what about anorexic patients? There is no conscious desire or need to go forage because of anorexia’s defining restrictive nature.

The hope is that, through this, we may find out if there is any excess movement when underweight due to the subconscious need to satisfy hunger. If so it would lead to theories having to do with the excessive exercising that so many eating disordered patients partake in under the possibly superficial guise that they are trying to burn off extra calories. Could the many long hours spent at the gym and walking the streets be actually due to the body’s misplaced need to seek nourishment? Only time will tell. This study still has years left to it but I’m already intrigued to learn what the findings from it are. In the meantime, though, I can definitely say that I won’t miss the device I am wearing once they take it off Wednesday morning. So far 8 hours down – 40 to go.