Getting Rid of the E.D.

Pumpkin Cheesecake - Take that Ed!

2011-09-26T09:16:00.000-07:00

I am thrilled to be able to write that it has been a remarkable summer of health and recovery for all of us. It has been amazing to watch Emily slowly disentangle herself from the remaining Ed thoughts and behaviours. When I wrote in May, Emily was doing really well with eating and her weight but, she was still very obsessive about food. She spent a good chunk of everyday focussing on food related activities like looking up recipes, shopping for food, and cooking and eating 'healthy' food. This continued over the summer but started to wain about six weeks ago. Now she spends a normal amount of time getting breakfast and preparing lunches.

This morning she told me that she feels like she has started to rediscover her ability to eat intuitively. She said even a month ago if she was hungry she would think, 'will I have a granola bar that has 100 calories, or will I have 300 hundred calories of fruit and dip?'. Now she thinks 'do I feel like having a granola bar or fruit?'. She also told me that the only thing that triggers 'Ed' thoughts is feeling overly full. But the good news is that she recognizes them for Ed thoughts! It gave us the opportunity to talk about how replacing every thought and behaviour associated with Ed would take some time in the same way as it took time for them to build up. She also told me about a memory that just came back to her about the first time she noticed that she liked the feeling of being hungry better than the feeling of being full. That was in grade seven, two whole years before we even started to notice anything. If the disease took over two years to reach it's peak, and two years of rebounds and relapses, then we should expect that it will take two years to dissipate completely.

The things that I still see as being Ed related are her limited repertoire of restaurant meals that can tolerate and her continued outright aversion to a few things she used to love. But there was progress the other night with pizza, something that has terrified her for a long time, after having a small piece, and asking for more, she commented that she was surprised by how she had convinced herself that she hated something that tasted so good.

In the meantime life is blissfully normal. I spent the summer, distancing myself from the role of CEO of the family based treatment process. I can't even remember the last time I went grocery shopping. Today I cracked open a cookbook because I wanted to, not because I had to. But the sight of all of my frantic scribbles from last fall, momentarily sucked me down into the deep dark Ed abyss, reminding me that I have some work to do to shed my own post-traumatic stress. Once I got over my mental lurch I was delighted by the experience of reading the recipes and and seeing all of the possibilities rather than all of the things that Ed wouldn't approve of. I am really looking forward to preparing, sharing and enjoying Thanksgiving dinner this year. It has always been my favourite family meal and even when Ed was with us, it was still enjoyable, but I have a feeling that this year will be extra special for me. I think to mark the occasion I will substitute pumpkin cheesecake for pumpkin pie for the thrill of watching Emily eat cheesecake which for me has become the iconic nemesis of Ed.

So now I find myself, along with others, asking, if Ed will be gone for good. I always believed in the theory that if the brain is not deprived of nutrition for more than two consecutive years, then the disease does not get hard wired into it. I hope this will be the case for Emily and I would not be surprised it is was, but I also wouldn't be surprised if Ed resurfaced. I find myself looking at her behaviours through my Ed filter every couple of weeks. The frequency of doing that is a good measure of my recovery from the trauma. Two years ago I was doing it every waking moment, two months ago it was every week, now every other week. It is not upsetting to have to do it, not like finding my list in the cookbook was, rather I consider it to be my duty to be curious and vigilant until I know she is safe from Ed.

Now that I have so much more time and ease in my life, I am starting to get back to some of my favourite activities like singing in a choir and I just started a 300 hour yoga teacher training program. I will be blogging on the topic of my observations of teacher training as a way to deepen my learning experience. I think the healing power of yoga could benefit the families who are struggling with anorexia so maybe my blog will be helpful in an indirect way. I won't say this will be my last blog on Getting Rid of Ed, but it will be the last one as long as we remain in our current state of health and recovery. I will insert a link to my yoga blog on 'falling in love with myself' in case you have an interest. Namaste!

ED's going down!

2011-05-03T13:19:00.000-07:00

I don't know if I am capable of conveying my current emotional state in writing without sounding trite and foolishly naive but here goes. My darling, daughter is back. She is better than back, she is a wonderful 17 year-old version of the sweet, charming, vivacious girl we had before the demon ED took over. And I am feeling lighter than air. The weight of the conscious and subconscious worry has been lifted. I feel like I've been released from a prison of dread. I wish every parent who is still in the throes of dealing with ED, could get a dose of this sensation for a day to help them replenish their energy.

It's been a long two years, of rebounds and relapses but now after six continous months of being at the right weight (in her case the 52nd percentile), adequate fat intake, cognitive remediation through playing SET on her ipod, a bout of binging and purging that left her feeling disenchanted with her disease as a friend, followed by a transformational trip to Poland to deliver wishes to terminally ill children, she is back.

I don't think for a minute we have gotten rid of Ed once for all, but I know that she is managing Ed, he's not managing her anymore. And I know that if Ed gets a hold again, we can get back to this place again. I know that every day she is happy, is a gift to be treasured. I know that two steps forward and one step back is still a step forward. I know that food is the medicine, eating is the therapy, and that evidence based knowledge can save children and their families.

I am blissfully grateful to every one of you helped along the way, with your gestures of love and support or your silent well wishes. I owe so much to the parents and the professionals who have been working as advocates for FBT and evidence based treatment. I hope to be able to find my own way to make a contribution to this community. If I can help you please let me know.
Namaste!

When Stomach Flu is a Good Thing

2011-02-21T09:58:00.000-08:00

Last weekend Emily came down with a severe bout of stomach flu. It made us a little nervous, but things have been going so well that I didn't feel the need to react to her lack of eating for the first 24 hours. Instead I decided to ride it out and see what happened once she got past the symptoms. By Sunday night she was ravenous and although she choose her items carefully she had no problem eating them with the gusto of person who is hungry and relieved to be able to eat. I kept a close watch on her for the next few days because I was aware that any restriction for any reason can trigger the ED thoughts, voice and feelings in her.

A few days later, as we were driving to the hospital for her weigh in, she shared with me that she was feeling ready to move forward with recovery. When I asked her what had prompted the shift she said it was because having the flu reminded her of two years ago when she was too sick with mono, to eat and how she felt so relieved to have an excuse not to eat. But this time when she was too sick to eat she was disappointed and worried about it. And that made her realize that she is further along in the recovery process than she thought.

While I was overjoyed to hear that she was feeling ready to choose recovery, I wasn't all that surprised because for the last month she has been successfully taking full responsibility for her breakfasts and lunches. I have to confess that we kind of blindly stumbled into her taking control of her nutrition as a result of unexpected house renovations that resulted in Emily having to move in with relatives. At first we talked a lot about meal planning and did the food shopping together but then it just evolved into her taking over most of the planning, shopping and preparation of her breakfasts and lunches with only minimal supervision by her aunt. I feel that in the past we have gave Emily control of her food too early in the process.

I hope that her success with managing her meals without supervision has bolstered her confidence and made recovery seem a little more do-able. But I have been fooled by the ED so many times in the past that I know there is a possibility that her words, behaviours and even her weight could be yet another elaborate rouse on the part of this demon disease. But until I see evidence of slips and relapse I am going to enjoy this bubble of contentment.

Celebrating 8 weeks of Rebound

2011-01-07T08:04:00.000-08:00

We have made it to week eight of refeeding without any signs of relapse, slips yes, but relapse no. I attribute this milestone to using the magic plate to deliver the following prescription:
1. adequate levels of fat i.e. 60-70 grams per day
2. nutrition intake at least every four hours
3. a variety of foods

Emily's weight is maintaining at exactly the 52nd percentile of the growth chart for girls, which is roughly the percentile she was at from birth to age 12. Her mood and energy level are largely very good. She is eating her meals with only occasional objections. She is juggling school, friends, water polo and fund raising for a trip to Poland with a normal amount of frustration and success. All in all, I would describe this as the best she has been in at least two years.

We are indebted to Harriet Brown's book, 'Brave Girl Eating' and the good people at the Maudsley Parents website who offer the 'ask an expert' program, for providing us with information and insights that were critical to getting us to this week eight milestone.

While things are good right now there is still work to be done. Emily has rejected the efforts of the Team to provide her with CBT so they have released her from treatment. She will be go in for bi-weekly weigh ins and we will be notified if her weight drops by two pounds. She has acknowledged that she is not prepared to let go of the eating disorder and make recovery her goal. But she is prepared to stay on track with eating to ensure she can achieve her goal of going to Poland in March. And she is not making any movement toward taking responsibility for her nutrition. It is as though she will eat as long as I am in complete control. She will snack on her own but she won't tackle suggesting or preparing a meal.

I have been pondering her inability to let go of the disease and her alexithymia which is the inability to express emotions with words, a term a learned from watching Dr. Thomas Silber in this UTunes video called Grand Rounds . And wondering how they are connected to each other and to the E.D. and what brain functions are involved in maintaining them. Every time I read or watch something on cognitive remediation therapy (CRT), it just rings so true with what I see in Emily. But so far her Team have not been able to offer any help in that area. I recently watched Kara Fitzpatrick's presentation on insights into the neurobiological basis of eating disorders and was once again struck by how those concepts help to explain Emily's inability to change her mind about the E.D. At Stanford they are conducting a study to determine if CRT prior to CBT helps the patient to develop the cognitive capacity to shift their thinking so that the CBT can be more readily adopted. I believe that CRT could help Emily to develop better set-shifting and central coherence functioning and then she would be more receptive to the CBT and indeed be better at dealing with problem solving in many areas of her life. But I can't figure out how to access CRT for Emily.

When the Recovery Bubble Blew Up

2010-11-25T01:46:00.000-08:00

I recently completed a Myers Briggs Personality Indicator tool, and for the fourth time, it confirmed that I have a preference for viewing the world through facts, data, logic, and objectivity as opposed to intuition and feelings. So perhaps that is why I keep failing to tune into my 'spidey sense' when it starts tingling.

The tingling is a tiny little voice that asks, is she upstairs purging? But it's answered by the 'show-me-the-facts' voice that says 'she can't be, I don't see any evidence of it'. Which is followed by the soothing seductive voice of Cleopatra, queen-of-denial, who chimes in with, 'it's your imagination, she's doing fine, she's just tired, or it's just teenage behavior'.

But eventually the spidey sense, triggers the researcher in me and I start looking for and finding the evidence I am dreading and then I realize that the recovery bubble is just an illusion that Ed is dangling right in front of my blind spot.

Thankfully, my intuition also drives me to research online for more resources and information. I order two new books, one for Emily, which she accepts but says 'thanks' in that fake, squeaky Ed voice, while her eyes briefly flicker with Ed's abject scorn and hatred for me. And a book for me, that I am not sure I can quite face up to reading because I feel like I am too raw emotionally to read about the suffering of another child and family. But I force myself to crack open, 'Brave Girl Eating' by Harriet Brown, because I want to get back to viewing my daughter as brave and courageous. I need to find a way to shift my mounting anger and frustration with her for appearing to not want to let go of Ed.

Over the next week, Brave Girl Eating, begins to transform my thinking, my knowledge, my attitudes, my beliefs, my patience, my resilience, my life. I'm not quite sure how or why it made such an impact, but I think it has something to do with triggering a watershed synthesis of all of the learning that I have acquired over the last 14 months of FBT. By that I mean, I have been steadily acquiring knowledge and skills and increasing my understanding of anorexia and FBT. And I have been applying my knowledge and analyzing my applications and their outcomes, but I haven't been able to step back and weave it all together into the right blueprint for my daughter and her specific pathology and our specific set of circumstances and family dynamic. Now, for the first time, I not only feel like I know more than Ed knows, I trust in what I know and I trust in how to apply it.

What I know now is that in spite of being weight restored, my daughter needs to eat every three hours and she needs eat foods containing fats, every three hours. If she doesn't she starts to slip in her thinking, her sleeping, her mood, and in her brain's ability to use the medication she is taking. The other thing I have learned is that every act of restriction, even the unconscious ones, trigger the eating disorder thoughts and feelings. These two facts translate into the realization that Emily is not ready for phase two of the Maudsley method - regaining control of her eating. And she wasn't ready last December, or in June or in September when we allowed her to take back control of some of her eating.

Sadly, I have come to realize that because we wanted to keep recovery moving forward, we undermined her recovery. Now she has lost hope that she will ever recover, she feels like she can only sustain her motivation to fight Ed for six weeks and then she falls into the abyss and it just isn't worth fighting for anymore. Who could blame her for feeling so hopeless. Six weeks ago she started the downward spiral, four weeks ago my spidey sense started tingling, two weeks ago she admitted that she didn't want recovery, she wanted Ed, but she agreed to let me feed her for one week, three meals, three snacks, 60 grams of fat. One week ago she still didn't want recovery, but wonder of wonders, she continued eating, her mood improved, her anxiety over eating seemed lessened, she was more engaged with her life. As far as I am concerned the nutrition and especially the fat is working. Yesterday she reluctantly agreed, at a Team meeting, to continue with treatment. Her words were not very encouraging and clearly part of her brain is still very stuck in the Ed world, but I am going to slather that part of her brain with peanut butter, cheese, ice cream and butter six times a day until her brain gets stuck on recovery.

Go read, 'Brave Girl Eating' if you are refeeding a child, or if you are supporting a friend or sibling who is refeeding a child. It will help in ways that will surprise you.

The Recovery Bubble

2010-10-03T04:20:00.000-07:00

Tomorrow will mark six weeks since Emily chose to stop restricting with the help of the magic plate and an increase in medication. This section of the road to recovery has been a pretty straight line. Emily's weight is healthy, she eats meals with relative ease, she is preparing her own lunches and some breakfasts. She even served herself at supper recently. She is back at school and thriving, back at water polo and loving it, back into socializing with a variety of friends and is even exhibiting episodes of typical snarky teenage behavior.

But, and you knew there would be a 'but', sometimes it feels like her mood is a little too good, which is probably the medication. And her list of comfortable, easy foods is quite limited while her list of 'bad' foods is very long. I have also seen a pattern of her becoming intensely fixated on ideas like going to Poland to help sick kids, and doing water polo five times a week, and getting her nose and lip pierced, and can't shift her thinking away from her version of the issue even when there is substantial objective evidence that she should.

I have found myself describing our current state like being in a bubble where everything is good, stable, moving in the right direction and faintly glowing with the promise of significant recovery. But like all bubbles it can be burst anytime by the smallest unexpected pin prick, or be blown off course by a predictable but unavoidable wind storm. So my challenge is to enjoy the bubble while it lasts, be prepared for the inevitable wind storm that life will bring up, and most importantly to be awake enough to notice when some unexpected pin prick causes her to shift from living in the bubble to pretending to be living in the bubble.

To meet these challenges I need to get the team going on the CBT that got deferred due to Emily's restricting and team member unavailability. I need to revisit the information on 'set shifting' and make more inquiries into the availability of cognitive remediation. I need to spend a little bit time of everyday reflecting on whether or not there is evidence of a pin prick to try to see when she is starting to slip rather than waiting until she has completely slipped off of recovery mountain.

So this is why blogging is such a powerful tool. Before I sat down to write today, I didn't even know that I needed a game plan let alone what it would entail. And if any one out there has any suggestions for ways to help a mom notice slips, and more importantly how a mom can help with slips, I would love to hear from you.

Namaste

The Magic Plate is back on the table

2010-08-28T04:11:00.000-07:00

After a tortuous weekend for Emily, on Monday she made the decision to stop restricting with our help. She said she really didn't have a choice because there is so much that she wants to do with her life and she can't do it if she isn't healthy. I was surprised by how quickly she was able to shift her thinking because on Sunday I was thinking she was going to end up back in the hospital because she couldn't eat anything and was an emotional and mental wreck.

On Sunday afternoon, after a dreadful morning, I was desperately trying to think of something to distract her from her pain and a friend offered to take us kayaking. She really wanted to go but I was concerned that she was too weak to manage it safely. We checked her heart rate, which seemed okay, but I said she had to eat something in order to go. She managed to get some fruit and yogurt down and I brought some snacks. She kayaked for about 20 minutes and came back to shore, she wouldn't admit it to me but I think she was exhausted. While I was out on the water she ate some more food, then asked to go swimming. Together we swam a couple of hundred meters, the water was 24c degrees, which is very warm for us, which made it tolerable for Emily. That night she ate several pieces of sushi. It took her a long time and she ate it while watching TV, but she ate the entire package, which was the most I had seen her eat all week.

Monday morning she surprised me by getting up early to say good bye to me because I was going back to work. She seemed 'lighter' mentally. Monday afternoon when we talked on the phone, I commented that she seemed a little less stressed and that's when she told me she had made her decision. when I got home, she presented me with a list of menu items that she finds easier to eat and a grocery list.

Tuesday we met with the team, she told them her decision and we discussed strategy for the next week which included upping her medication to help reduce her anxiety over eating, refeeding at 1200 calories a day and working up to 1800, no exercise or driving the car for a couple of weeks. Her vital signs are all good, her weight is still within a healthy range. We dusted off the magic plate and she re-started her slow climb up recovery mountain.

The refeeding has had it ups and downs this week but it has been more up than down. By Thursday she was ready to spend time with some friends, and she spent Friday studying for a math exam that is coming up on Tuesday. She says she is seeing a friend today, which I hope she does and tomorrow we have plans to attend a fundraiser for a wildlife animal sanctuary that she has a great interest in. I see my role, in addition to refeeding, requiring me to throw interesting and fun 'life' activities into her path to keep her connected to her motivation to be healthy. I even told her she can use the 'I need to be distracted' card to manipulate me into taking her just about anywhere she wants to go.

For the most part, I have been feeling very calm and strong and steady throughout this latest episode, which I know is because of my yoga practice, especially the meditation. I meditate on the qualities of a beautiful tree in my yard every morning. It helps me to stay rooted, grounded, consistent, protective, accepting, nourished and open and flexible to whatever the wind blows through my life. That's not to say that I haven't had moments of sheer terror that the E.D. would destroy Emily, and moments of regret for not seeing it sooner, and moments of self-pity for having to do all the work related to refeeding. But they are just moments that I allow to come and then let go. I know I can make the choice to let them go or hang on to them. A year ago, when all this started for me, I didn't know how to let them go and they consumed me. It turns out that the E.D. has been a powerful catalyst for some extraordinary changes in our lives. I am not grateful for the E.D. but I am grateful for the positive changes.

If I am back to blogging, the E.D. is back

2010-08-21T05:20:00.000-07:00

Well truth to be told, it was never really gone. And truth to be told, I never really felt like it was in spite of my darling Emily's very exceptional acting abilities. Upon reflection, I think there was maybe a five week episode, following the hospital stay, where healthy Emily was stronger than the E.D. Then we went to the cottage for five weeks and the E.D. got stronger and stronger but the restricting got harder and harder so binging and purging silently took up residence with us for most of our time away.

Once again, I found myself observing behaviours that seemed unnervingly familiar. And once again, I was chalking them up to adolescence in the face of Emily's exasperated "Really, I'm fine Mom" responses to my queries. Apparently 'really I'm fine' is code for 'the E.D. is alive and well'. But a few days after our return home, Emily bought two items at the grocery store that screamed 'Hi it's the E.D., remember me?' - rice crackers and cup of soup. And like a combination lock tumbling through the right sequence of numbers, all my little nagging thoughts clicked into place. My mind reoriented itself to look through the E.D. filter and reality took hold. I was standing in the kitchen, kind of verbalizing my stream of consciousness in real time, and I saw the look of sad agreement on Derek's face and knew he and I were on the same page.

We had a team meeting set up in a few days but I wanted to let Emily know that we were gravely concerned so that she wouldn't be blindsided at the meeting. I took the opportunity to mention a couple of my concerns to her, which she refuted at first. But I like to think that I saw a little bit of relief in her. Relief that the cat was out of the bag, or perhaps that now she didn't have to go it alone.

She said that she didn't want to talk about this to anyone so I was the relieved one at our meeting, when Dr. C, was able to draw her out of her fierce reluctance to disclose her thoughts and feelings. But what poured out of her was so very hard to hear. The anorexia voice has taken over her thinking 24/7, she is engaged in full blown restricting, although thankfully the purging has stopped.

Dr. C, has given her four options and four days to consider them. She can continue restricting, try to stop restricting on her own, try to stop with the help of the team and us, or go back in the hospital. She has been given an exercise to use to help her make her decision. She is wandering around the house in the E.D. fugue, unable to distract her mind from the 'voice' to get any relief, unable to eat, unable to stop thinking about eating, unable to choose health and life over the power of the E.D.

She told me last night that she still can't believe that this is happening to her. She is embarassed and ashamed and doesn't want to let everyone down and she hopes that people won't find out. We are in holding pattern until Tuesday when she has to make her decision then the team will instruct us on how to move forward. I think that if she chooses to let us help her that we can implement the 'magic plate' strategy and bump up her team interaction to help get her back to being strong enough to give the E.D. the heave ho, if not for good, than at least for a while. I wish I could stop her suffering and mental anguish, it is the curse of motherhood to not be able to kiss it and make it better.

What's in a name like Ed?

2010-05-24T04:53:00.000-07:00

The five weeks since we discovered Emily's relapse has been the proverbial roller coaster ride. Week one was a descent into the pain and anxiety that re-feeding brings on, coupled with regrouping with the ED Team. Week two saw some improvement in Emily, both physically and mentally as she became nourished again, but that was short lived due to the decision to take her off of the antidepressant. She had been taking a very low dose of Zoloft since October but her Team was beginning to suspect that she might have bipolar disorder, in which case that particular drug wouldn't be appropriate and might even have contributed to the relapse. She stopped taking the medication on Tuesday and by Saturday she couldn't eat, by Sunday she couldn't drink, by Monday she was in the hospital with a feeding tube.

While the process of diagnosing bipolar disorder was engaged she was started on Seroquel. For the next ten days, she got to experience, the angst of dealing with a feeding tube, re-feeding on hospital food with strangers, life on a psych ward, group therapy, triggering and being triggered by another patient with an ED, the joy of a good night's sleep, regular therapeutic sessions with her psychiatrist and increasing clarity over the high cost of AN. During this time we watched her transform as her, Seroquel induced, anxiety free personality emerged. It was utterly amazing to hear her say things like, 'I'm getting so behind on my school work, but I'm not going to worry about that right now'. But at the same time she was clearly torn by the prospect of leaving the safe, trigger free, cocoon of the ward, for her life that was waiting on the outside.

In the end, the desire to attend a school dance and an upcoming three day school trip, won her over and home she came. Re-feeding at home this time has been much easier, we are controlling her food choices and portions but she is doing lunch on her own at school. This week coming up, in preparation for her school trip, she will be making her own selections, dining out, and eating with others. This weekend, hubby and I are going away and Emily will be staying at home with a friend of mine who will help her with meals and keep her company.

We can see that she is working very hard at re-establishing her life but more importantly she is expressing a different mindset. She told us, in a Team meeting, that this is the first time she has felt like she really wants to get rid of the AN. Last fall when she came home from the hospital, she was planning to do what she was told to do until we stopped controlling her food or until she moved out and then she would revert back to the AN. Now she wants to get rid of the AN and get her life back. She wants to get to go to PEI this summer, learn how to drive, fall in love, go on the school trip. She went out by herself to meet up with friends three times last week, something she would never have done this time last month or last year.

She has also decided that she doesn't want us to refer to her eating disorder as 'Ed' anymore because it doesn't deserve a name, or a term of familiarity. So we are now referring to it as the AN, or the E.D. like we would if it were Alzheimer's Disease.

So the roller coaster ride continues. We had a great week but now with the stress of studying for exams, and perhaps spending a little too much time with friends, she is feeling more anxious and it appears that eating is more overwhelming. But she says she is trying to focus on the positives rather than the negatives and today feels better to her than yesterday did. It is clear to me that when her thinking is not fogged up by the anxiety she is able to shift her thinking to more positive and productive approaches.

It turns out that she doesn't have Bipolar Disorder but the Seroquel, seems to be working very well for her by reducing her anxiety and enabling her to sleep well. Although the idea of using a potent drug on a developing brain is scary, and this drug has the potential for significant side effects, the side effects of the AN are even scarier.

One final thought about the Seroquel side effects is that, without her anxiety to squash her ability communication negative emotions, Emily's adolescence with all of its raging glory is finally emerging. I say a big happy welcome to the sloppy, moody, can't decide what to wear teenager, who doesn't want to spend time with me any more unless I am taking her to get something she wants. What a sight her messy room is for my sore eyes.

How could we have let Ed take over our daughter-again?

2010-05-15T06:51:00.000-07:00

After several months of dealing with the ups and downs of life with a teenager recovering from and eating disorder, we discovered that Emily was in fact not recovering, she was in a full blown eating disordered state again. She was restricting, purging, and exercising excessively. She had dropped nine pounds, was exhausted and fainted at school, was withdrawn and was spending hours obsessively planning her strategies for getting to her new goal weight of 76 lbs.

After the initial shock wore off, then came the excruciatingly painful question, how could we have let this happen right under our noses - again. How could her E.D. Team have let this happen while she was in treatment? The questions were tinged with a hint of that destructive 'blame game' mentality but thankfully my yoga practice has enabled me to develop a much healthier attitude, and very quickly I knew the answers to those questions were critical to us understanding and learning from the experience so that we could move forward with 'getting rid of Ed'.

What we learned was that we were relying too heavily on her weigh-ins, as a gauge of her mental health. For example:
1. We rationalized the odd behaviours that were emerging as just typical teenage behaviours, because after all her weight was still okay.
2. We fell for the many 'illness' excuses that she invented for avoiding finishing meals and activities she was too tired to do. It couldn't have been malnutrition induced fatigue because her weight was okay.
3. We relaxed the 'every meal, as a family, at the table' practice, at her request, and why wouldn't we revert to old habits when her weight was okay.
4. We assumed the comments she was making about having a bad day or a tough time, or wondering what would happen if she got really sick again, were just random comments resulting from random bad days. How could there have been a building tidal wave of full blown Ed when her weight was okay?
5. We knew she wasn't really connecting with the psychologist that was doing her CBT, so when she finally dissolved into tears in a session we assumed maybe she was starting to break down some emotional barriers. And we weren't alarmed enough to press for a different approach to the therapy because she appeared to be eating and maintaining her weight.

The problem was that she didn't weigh what we thought she weighed. We think she was weighting herself down for her weigh ins. Ed had us all fooled again. But here are some of the signs I will look out for now: gum chewing, an increased interest in grocery shopping, a desire for foods like rice cakes, and other low calorie low fat snacks, chronic illness complaints, baggy clothes, requests to have supper while watching TV, school lunches made and packed when I'm not in the room, a desire to walk to school, lack of interest in spending time with friends. I knew all these signs from the first time through and I know my mind ignored them the second time through, but they won't get by me another time. Ed will have to become even craftier to outwit me a third time. Sadly though I suspect he can.

Another week another kilo

2010-01-30T03:22:00.000-08:00

Wednesday, at our meeting with the Team, Emily showed another weight loss and although it came as no surprise to me, I think Derek and Emily were a little surprised. I could see the Team shift into a different mode and intensity with this week's weight loss and I think that triggered a sense of relief in me because after the meeting I felt better than I had in some time.

Their response was to first try to understand what's been going on, which turned into a very humourous conversation after I finished my little bout of blubbering. We were describing the various and sundry ups and downs of Emily's world, including her first heartache over a self-professed bisexual boy who, unbeknownst to Emily, turned out to be dating her friend from school. And who was in fact waiting downstairs in the lobby for Emily to finish her session so that he could come and have supper with us after spending the earlier part of the afternoon with her. Derek suggested that they record this particular issue on their 'WTF' column, which just cracked all of us up. He can be so funny in these meetings, when he is recounting his observations, which I think is partly his way of handling his discomfort over sharing the intimate details of our life with outsiders.

The next part of the discussion was to figure ways to get Emily's food intake back up and we settled on adding three milk servings back into the mix, getting back to tracking the food intake to ensure that the Food guide values are met, and making her finish her dinner regardless of how much snacking she has done after school.

The final part of the discussion was around consequences to her if she was unable to get her weight back on track. The approach here is to take away physical activities that she is not nutritionally sound enough to manage, as opposed to taking away non-physical privileges like her phone or computer. We don't want her to be punished for having the disease because it is not her fault that it has kicked in, but we do need to keep her safe. Unfortunately Emily isn't doing very much physical activity so we don't have a lot of leverage here other than making her come home for lunch or no allowing her to go the Red Tail nature camp. But they have given her a week to turn around the weight loss trend before we have to impose some restrictions.

So far the week is going much better. Healthy Emily re-emerged on Tuesday morning and fingers crossed, has kept appearing for most of the day ever since. We haven't seen the teenage she-devil version except when Derek can't help himself and has to tease her about it. She has given into the new reality around the food and we haven't see Ed nearly as much at the table for the last three days.

I think I started breathing again some time on Thursday, but didn't recognize it until Friday. I was in a very bad place mentally from Monday to Wednesday when I had a sense that my negativity was mounting into an all consuming kind of mental numbness. I don't ever remember feeling quite this way. It felt a little like the beginning of depression but it was more oppressive than depressive, like my mind was caught in a vacuum of emptiness because it couldn't handle the fear any more. I felt like I was on autopilot and then I noticed it subsiding after the meeting with the Team and by the time I finished my run the next morning, it was gone - thank God!!!!

Now that I am reflecting on how I felt, I wonder if my new yoga practice had something to do with how I reacted this week. And if it did, I am not sure if that was good or bad. Yoga has been extremely challenging, both physically and mentally. I can't say I enjoy it yet, but it is a total distraction from everything in your life and it forces me to live in the moment if only for 60 moments a day. At the end of one of my classes, during the rest period, I started crying and so I just laid there for 5 minutes trying to cry quietly all the while filling up my ears with my tears. The class as focused on twisting moves which I later found out are the considered to be the physical equivalent of an emotional wringing out, which kind of makes sense to me. I hope that I can get more out of my yoga practice than flexibility and I am trying to be patient with the process of growing into my practice and so far I feel comfortable with being patient, which is not really like me, so that's a good thing.

Time to go make breakfast for Emily. She has water polo today, so I will be spending a lot of the day feeding her, but at least I enjoy cooking warm, filling winter dishes.

Relapse #1

2010-01-23T03:48:00.000-08:00

If I had to concoct a recipe for an eating disorder relapse (and why wouldn't you use a food analogy here) it would look like this:
- Five days of a sore throat
- 10 days of mounting exam anxiety
- A dollop of post Christmas blues
- A shopping trip for larger sized clothes

Mix that in with parents who don't recognize that Ed is lurking around, and then can't acknowledge that Ed has come out of the shadows and into the light. Fold in a heaping dose of misplaced optimism that tiptoeing around Ed will make him go away.

Let the dynamic stew for 10 days and voila you have a full blown relapse, complete with anorexic thoughts, behaviours, anxiety over eating and a two kilo weight loss.

But I wonder if you can call it a relapse when there hasn't been a full recovery. Maybe in this case it's just called a setback. But from where I sit emotionally right now, the word 'setback' seems far too innocuous for the level of fear and dread and distress that we are experiencing.

Every morning I wake up with a hope that today will be better and so far everyday it has been worse. And what is different this time is that Emily's attitude is more tinged with teenage rebellion so she is fighting back with nastier words and tones. For the first time I feel like Ed is going to damage our relationships, which I find ironic because that was Emily's fear back when she was in the hospital and it didn't come to pass until now. Maybe she was too sick to fight us then, but now she is just healthy enough bolster Ed with all of her pent up teenage rage.

Today I have promised Emily that I won't bring up Ed all day. Which is hard to do on the one hand because I don't want her to think that Ed will go unchallenged. But on the other hand it is difficult for me to point Ed out to her because I know I risk igniting a tidal wave of emotion that not only swamps her but us too. I think I will keep a journal of her Ed behaviours today and maybe try writing her a letter tonight with my reflections on what I saw and what I felt and thought about what I saw. Maybe if I present it to her in non-confrontational love letter format it will be less offensive to her.

I think I just had an epiphany, as I wrote my last paragraph I remembered a show I watched on teenage brains. Using functional MRI's researchers have learned that teenagers tend to interpret every emotional reaction as anger and every conversation with authority figures as condemning and conversely they respond with anger to pretty much everything. Phew am I ever glad I remembered this because now I am less concerned that my actions and words are responsible for upsetting her. Probably whatever I do or say will piss her off, because well duh, she's a teenager. Now I am feeling very grateful that I forced myself to journal this morning, this revelation will probably keep me sane for the next little while and I have to say a little island of sanity is a good thing because there is a whole bedroom of looney tunes right above me.

I don't know where this setback will take us over the next few weeks. I do know that our lives are on hold in terms of the get away weekend that Derek and I so desperately need, my work travel in February, meals, menus, recipes, etc. And that sucks especially after a bit of time and space where things seemed 'normal'.

Thankfully we still have the team to help guide us through this and they are available weekly again for now. And thankfully we know a lot more about Ed, and about how to fight him. We know more about ourselves and our capacity to tough it out. And Emily is healthier and wiser herself. I think she forgot how strong Ed can be and how sick he made her, so this setback will serve to remind all of us of that this retched disease is a formidable foe.

Chocolate Cake for Breakfast

2010-01-07T11:16:00.000-08:00

If someone had told me four, three, two or even one month ago that we would be eating chocolate cake for breakfast to celebrate Derek's birthday I probably would have scoffed and said 'that'll be the day'. But today was the day.

Now it must be said that Emily was uncomfortable with the idea because she doesn't like change around eating habits, and she only had a small piece, but she ate it and enjoyed it. Who knows what kind of 'nutso' things Ed screamed in her head all day about it, but she did it and although she did it partly to please us, she also did it partly because she wanted to. Ah, the sweet taste of success lingers on my tongue still.

We had a very good Christmas holiday. We did some of our traditional things including many food related activities and we did some new things too. She just kind of went with the flow. I checked in with her, maybe too often, to make sure that she was comfortable with whatever was going on and she seemed to take it all in stride. She had her fair share of Christmas goodies and sometimes Ed kicked up, but not always.

She maintained her weight over the last three weeks in spite of having a sore throat for five days. Her menstrual cycle continues with lots of pimples, bloating, cramps and moodiness which are all great signs of her excellent health. Her energy level is good enough to allow her to do 8k runs. And she looks fantastic, if I do say so myself.

Mentally she tells me that Ed is only present about 50% of the time which she considers much better than 100%. I want him gone completely but he is not working on my timelines is he? Lately, I think she has been getting more uncomfortable with her current weight. I guess when you gain 25 pounds in four months you kind of can't help but notice it. But she realized that wearing clothes she bought about 12 pounds ago is a trigger for those thoughts so after her session with the Team yesterday she announced that she needed new jeans and new school pants. I wonder how many of us to quiet the nasty 'self improvement' committee in our heads with some clothes that fit properly and make us feel good to wear?

I have come to realize that one of my challenges for this stage of her recovery is to not let my guard drop and to make sure that we keep anchoring ourselves with breakfast and dinners at the table. Over the holidays things got a little out of whack for us and while a change was good in the short term I believe that we need to come together twice a day to break bread and commune for a lot of reasons. We have all but stopped playing cards or games at meal time because Emily doesn't need that level of distraction. Plus we added a lovely dog named Kismet to our clan recently and he provides more distraction for us.

One of the other challenges that we are facing right now is figuring out which of Emily's behaviours are Ed related versus puberty related. We think we are seeing a lot of normal teenage angst, defiance, snarky toned retorts, emotional highs and lows. But sometimes we aren't quite sure how to handle her because we are virtually brand new to the whole teenage parenting role. But at this early stage of the process I can usually laugh off her antics because normal teenage stuff is a treat compared to the psycho Ed stuff.

Things are good for us right now. Life is feeling more normal all the time. I don't wake up feeling panicky. I don't feel stressed about what to serve for meals. Emily has started making her school lunches and taking more independence around her other meals. We've seen a difference in her enthusiasm and appreciation for meals since she has taken on the responsibility of feeding and caring for Kismet. I know she is at a stage in her life when she needs to establish her independence and ironically Ed robbed her of that completely so we need to help her to regain it in ways that don't jeopardize her health or her growth. That will be a tough balance to strike but at least I know what I am up against and I am feeling rejuvenated enough to take a stab at it.

Happy New Year, Happy New Decade and Happy Birthday to my wonderful guy!

Our darling daughter is back!!

2009-11-27T05:05:00.001-08:00

Yup it's true, Emily, the real 'honest to God' Emily, is back. I can't believe how far healthy Emily has pushed forward and how far she has pushed Ed back in the last two weeks. She is not only back but she is happier, more self accepting, wiser, and less prone to anxiety than she was three years ago, long before all of this started.

We now see a vivacious, courageous, compassionate, engaged, upbeat young woman show up at the breakfast table every morning. We see a person who has the tools to cope with the run of the mill frustrations and disappointments of teenage life.

We have only seen Ed at about three meals out of the last 20 and I think we kicked his butt in a kind but effective way. We don't see 'Ed' rules around eating, we don't see over reactions to stress, there is less clinginess, less dependence, less obsessive behaviours.

We are utterly amazed and utterly grateful.

I have to confess that it all happened just in the nick of time because I was starting to unravel. I had a major melt down two weeks ago which made me realize that I was approaching the zero stress tolerance level. I knew the time had come to distance myself from Ed or risk my mental health. I had several escape fantasies emerging in my tired brain, some of which were pretty scary, but I chose returning to work part-time, quitting caffeine, exercising more regularly, and getting away all by myself to a few days, (which is where I am right now). My self-care tactics, combined with Emily's progress have enabled me to get to a much happier and calmer place.

Self-care is tricky thing. It makes a lot of sense in theory but in reality it is impractical. Afterall when you are running around feeling like your hair is on fire finding some 'me' time isn't realistic. But even harder than that is acquiring the ability to a) figure out what you need, b) figure out that you are actually entitled to self care, and c) figure out how to ask for what you need. I think women have a really hard time with this, I know I do. But one of my many readings on dealing with 'Ed' talked about the responsibility that parents have to model 'self care' for our children. What a concept, not only am I entitled to self care, I have a duty to practice it and model it for my child. I can do that, because in case you don't know this about me, I like to follow the rules. So if you are like me and never learned about self care because your parent's didn't model it for you, it is not too late to jump on board this train to well being. Even if you don't have kids, you should consider it your duty to model self care for others that you love.

Who knew work would fall under the self-care category. One of my many, many lessons from the past few months is that when you lose the ability to work, for whatever reason, you appreciate it all the more when you get it back. Returning to work has been very therapeutic. I love being there because the people I work with are fantastic and extremely supportive, I get to enjoy walking to and from the office, I get to work on interesting and stimulating projects and tasks, and I know I already said it but - I get to spend time with the amazing people in the Coop Office. It is a completely 'Ed Free' zone.

Some other signs of my progress include the realization that I went for a run the other day for the first time because I wanted to, not because I wanted to escape. I don't feel the need or desire to talk about the ordeal to anyone; it is no longer 'top of mind' for me. When we saw the Team yesterday I didn't have a list of concerns to raise with them. When a team member asked me if I saw light at the end of the tunnel I realized that the little light I saw a month ago has spread to fill my entire range of vision and now 'Ed' is a little black dot in that vast sea of light.

Emily has turned a corner on her recovery and so have we. Some of the signs of recovery are quite subtle. She ate birthday cake at a party Saturday night. She helped me grocery shop without dread or anxiety, she even said she loved yogurt drinks and could drink them all day. She is dining out with Derek tonight and she agreed to let me invite Grampy down for supper a few days ago (ironically he turned me down though when he found out it was a vegetarian meal). Subtle or not, the signs are monumental.

And through all of this, Derek has been there providing a safety net, a shoulder to cry on, a joke, a game of Crazy Eights, a sounding board, a retail therapy buddy, a friend, a Dad - a husband extraordinaire. Grateful doesn't even begin to cover it.

Things you never want to hear your kid say

2009-11-08T08:17:00.000-08:00

Reflecting on the past week made me realize that things have recently shifted in two important ways. For the first time in 10 weeks, I felt okay more than not, and our 'new life' started to feel normal instead of pained and awkward. I guess it is a testament to man's capacity to adapt to new environments and Emily's capacity to continue moving forward with her recovery.

Early in the week I read a great deal of a book called 'Skills Based Learning for Caring for a loved one with an Eating Disorder'. It scared the hell out of me because there seems to be so much to learn but it gave me an idea of how to approach Emily on a few issues. That night I tried to engage her in a conversation to get her to rate herself on a scale of 1-10 on how ready she is to look after her nutritional health. At first she rated herself a three, but then when I asked her to walk me through a day of feeding herself and she started listing what she would choose to eat for breakfast and lunch she realized she was actually higher than a three. I think she is maybe at a six.

Then I tried to get her to talk about her 'Ed' eating rules but she was really not into having that conversation. I tried to convey that eating rules are not healthy and are keeping Ed going and that talking about them helps to lessen their hold over her but I am sure in her head she was thinking yadda yadda yadda mom! I was heading out to go to my first choir rehearsal since August and she was reluctant to let me go. She is like an eight year old afraid to let her mom out of her sight. I offered to stay home so we could talk more about stuff and she laughed and said she could handle me going out if it meant not having to talk any more. I mentioned her clinginess and separation anxiety to the team and they reassured us that reverting to previous anxieties is a normal reaction but that the skills she is learning to deal with Ed can be used to deal with any form of anxiety. Phew, I hope that comes true.

We had a good meeting with the Team on Wednesday. Emily's weight was up again which is good because if she gets sick this winter and loses weight she will have some wiggle room. So I was surprised to find that Ed felt the need to join us for dinner that night. But I realized it was a chance to use my newly learned 'skills' to deal with him. I think he surfaced to test the waters because Emily asked for, and was granted, permission not to be monitored for purging after meals any more. As much as healthly Emily wants that privilege she knows that Ed is still a threat so she let him out of the box at dinner to see what would happen. I was really glad that I was able to step up to the plate and state that I believed that her not finishing dinner was Ed not healthy Emily. It is always hard to initiate a difficult conversation because my natural reaction is to avoid it and make excuses for her not finishing her meal. And this time I remembered to tie the need to get rid of Ed into her goal of taking up water polo in January so that it wasn't looking like a power struggle between Ed and me. Can you tell I was pleased with myself?

The following evening, Emily had four KVA (school) friends over for dinner and fifth to watch a movie. Two of them stayed for a sleep over which meant that Emily had to eat several times in front of people. She said it was really hard but since she has been eating in front of them at school for a while now and because she was rewarded with the fun of socializing she was able to do the hard work of eating so that she could enjoy the rest of the event. Her friends from KVA were delightful, a big change from Shambhala.

So all in all it was a really good week and I was starting to let down my guard a bit when out of the blue Emily started talking to me again. I was delighted to hear her say that she is really enjoying feeling well physically and that she is starting to use and to trust in the techniques and tools the team are teaching her for managing Ed. I wasn't ready for her to tell me that in the week before we found out about Ed, she had resigned herself to the fact that she dying and wouldn't live past the end of the year. I can't begin to describe how mind boggling it is to know that my highly intelligent, loving, warm, compassionate beautiful daughter was so ill that even with the full conscious knowledge that she was killing herself she was unable to ask for help. When I asked why, she said it was because she thought it was absolutely hopeless and she was too tired to even talk to me about it. So I will not be letting my guard down any time soon. You can't when you are dealing with a disease this deadly.

But the rest of my life starts today with the full knowledge and fear that it is more vicarious than I want to acknowledge. So now I am plotting my return to living. This week I start to plan out how to integrate working, singing, socializing and exercising into our new life style of meals, appointments, discussions and schleping Emily around. And being the 'planner' that I am, I will enjoy this project I will work on re-energizing myself with some rest and relaxation.

Gotta run and get lunch for my poor girl who is feeling yucky and sore from her H1N1 shot.

2009-10-31T06:21:00.000-07:00

In our family we usually celebrate milestone events by getting together to share a meal or at least a cake. But one of the hundreds of things that suck about 'Ed' is that he has put the kibosh to that family tradition, at least for now. This week Emily achieved a significant goal in her fight against anorexia - she reached her goal weight of 110. But although it was the hardest thing she has ever done we didn't turn to her and say 'congratulations, you did it', and it didn't even occur to Derek and I to take a private moment to acknowledge how relieved and grateful we felt that we've all made it this far. Instead we just moved on to the next topic on the list of things we needed to discuss with the team. Our only acknowledgement to Emily was that she could switch to skim milk and cut out one snack a day. It wasn't until the next day that I realized the magnitude of this milestone, Emily is weight restored and we have finished phase one of this treatment process, only two phases to go.

That prompted me to read about the next phase of treatment in my reference books which state that the goals of the next phase are:

for us to maintain management of the eating disorder symptions until Emily shows evidence that she is able to eat well and maintain weight independently
to return food and weight control to her
to explore the relationship between the anorexia and normal adolescent development issues i.e. self esteem, body image, relationships, independence

I don't allow myself to envision Emily eating independently yet because it seems so far off. While she is eating snacks and lunches as school she finds it extremely difficult to eat in front of her classmates and she will only take what she considers 'healthy' foods to school. She still isn't comfortable with the idea of having any family members in for a meal or with going out to a restaurant. She will eat what I feed her but won't participate in choosing or preparing it. She will help herself to snack items occasionally but only if I give her permission. The Team have advised to work on these challenges one at a time until she is comfortable with it because stacking them up will be too overwhelming for her. I have found that when she sets the challenge for herself she will meet it, like snacking and then lunching at school, but if I try to get her to do something she won't do it. Tonight we are going to a Halloween party and I will be curious to see if she is able to eat anything. Maybe eating in front of ghosts and goblins will be easier. She mentioned that Thursday is pizza day at school and she would like to be able to participate in that soon. We tried take out Chinese recently and that didn't go very well. Damn I want my old life back! Actually what I want is to go back about five years and get to do it over in a way that would prevent Ed from getting through the door.

As for the last goal of this phase, exploring the relationship between Ed and adolescent issues, I am very afraid of what that will entail. I am exhausted from phase one and don't know how to muster the energy to learn the new skills and behaviours that the Team is promoting for her healthy emotional development. The kinds of issues we have to deal with loom large in my tired mind. She needs to become less attached emotionally to us because right now she can't even sit in a movie theatre with someone between she and I. She needs to develop peer relationships that are more appealing to her than her relationship with us and she hasn't spent any time with friends in over a week. She needs to become accepting of her body image but she won't even go swimming yet because she doesn't want to be seen in a bathing suit. She also needs to get ready for dating and be comfortable with her sexuality and at this point in time that seems at least five years away to me. And our reward for her achieving all this adolescent development is that we get to deal with the kind of typical adolescent behaviour which we all know drives adults crazy.

Apparently one of the purposes 'Ed' is serving is to be a big wake up call to the fact that how you parent a child is vastly different from how you parent a teenager. My new term for this stage of my life is 'full frontal parenting', and if that has military undertones it is meant to because I feel like everything about my parenting style is underseige and that I am having to regroup and remuster every 10 minutes.

But old habits die hard and I gave into one yesterday and cooked a dutch apple pie to for us to eat and celebrate Emily's successful weight restoration. She gave me a quick flash of Ed's disapproval over the idea of celebrating but she tucked in and ate most of her normal sized piece of pie leaving behind a piece of crust that frankly I left behind too because it wasn't homemade.

And now it is time to figure out what to cook for supper, make my party appetizer, get my costume ready and finish putting up the Halloween decorations. And if anyone else asks me what I do all day I am going to lose it.

When pimples mean progress

2009-10-22T04:17:00.000-07:00

Emily is continuing to make excellent progress. She gained two pounds this week which means she is only two pounds away from the bottom of the ideal body weight range for her age and height. And what is really amazing is that she has actually come to realize that she feels much better at this weight.

The advantages of her reaching the goal weight are that she can switch from 2% to 1% milk, her hair has stopped falling out and she is able to take on more physical activity. She will be starting phys. ed. tomorrow, but is only able to let her heart rate reach 120 beats per minute for this week, and she plans to start walking to school. I was concerned that she would have to increase her caloric intake to compensate for her physical activity but that is not the case because once she is at the goal weight she would have needed to reduce her intake in order to not continue gaining. But by adding physical activity she can maintain the same food intake and maintain her weight. Well that's the theory at least. The down side of reaching her goal weight is an increase in acne because her body is producing estrogen again and I am sure many of us can relate to the horror of teenage pimples.

Healthy Emily is present so often now that when Ed shows up it is readily apparent. She becomes totally silent, motionless and gives off a very troubling aura of intensity. I can spot Ed at 50 paces these days, I don't even have to see her face to know when it is happening because the change is so dramatic. Sadly she turns into the girl she has been for the last year so we are very familiar with what Ed looks like only now we get to see it in contrast to healthy Emily.

Emily has managed her morning snack at school with no problem and we have progressed to me bringing lunch for her to eat in the car and she takes her dessert into the school to eat with her classmates. Her motivation is to have more time to socialize with her classmates. She is really enjoying school, and the people there a great deal. She started taking German and Mandarin and I am in awe of her ease with speaking German. Her teacher asked her if she had taken it before because she sounds so natural. She is also playing the piano again and she has been jamming at school with a couple of other students, both of whom are outstanding musicians. There is a school fundraising event this weekend, a bake sale on Spring Garden Rd. in front of the Gardens, on Saturday between 10-2. She is looking forward to participating and even hopes to be able to make some marble squares to sell. So if you are in the area on Saturday bring your cash and get some goodies.

Today, she set the goal of taking her school blazer off during class. She is the only student who wears her blazer so she is starting to feel like she is standing out. When I met her at lunch she said she did it. It was harder than she expected it to be at first but it got easier after a while. Ironically, she noticed that a couple of kids left their blazers on today. She also commented that she has the most 'fitted' white shirt which made her feel a little awkward. In fact the white shirt, which is one of her H&M purchases from the weekend, is very flattering, so although no one said anything about her not wearing her blazer I am sure that the boys in her school noticed.

Emily thinks she might try lunch on her own at school tomorrow. Derek and I are both apprehensive about that but we have to let her decide if and when healthy Emily is ready. And we will have a contingency plan to compensate for any uneaten food. She is planning another weekend of socializing with friends just like a real teenager - phew that's a relief.

Her session with the Team yesterday gave her some tactics to use to reduce her Ed thoughts at meals. She is going to tell herself that 'yes this meal is hard, but it will be over soon and then I don't have to think about eating again for another three hours'. She is also going to try to go to school all day instead of just mornings, so today is the second afternoon she has stayed this week. She has been avoiding Thursday's drama class and can't quite articulate why, so it will be interesting to hear what she discovers about herself today.

She told me last night that she feels like she is not in the same league as the rest of the students in her class because they all seem to be very smart and accomplished at one thing or another. She said she is the least motivated student in the school. I missed the opportunity to ask her how that made her feel but today when she told me she signed up for an extra course, grade 11 biology, I realized that she might be feeling the need to work harder to feel like she belongs and deserves to be there. I plan to explore that with her tonight and give her the chance to label and voice her feelings rather than suppress them. I have been reading up on how all eating disorder patients suppress their feelings through starvation because the process of restricting food intake is a very time consuming distraction from all other thought processes and activities and one of the physiological affects of starvation is that it numbs the mind. Emily can't really remember much about the weeks before she went into the hospital because she was so starved that it is all a blur to her, but she does remember that it wasn't as hard to endure as the first month of treatment was. So now she has the opportunity to learn how to express her feelings in appropriate and productive ways so that they don't fester inside making her need to rely on Ed to help her suppress them.

The challenge of course is that Derek and I are both emotional suppressors so it means that we have to learn to do this ourselves so we can model emotional intelligence for her. Many of us think that suppressing our feelings is a sign of emotional maturity but in fact it is not because suppressed feelings not only cause sadness and a host of mental issues like passive aggressive behaviors and depression, they also cause physical illness. The alternative is to use our feelings to guide us through our lives by using them to understand what makes us feel good or scared or joyful or anxious. Today as I listened to the news about the Canadian dollar reaching parity with the US dollar I started to enjoy a happy memory of a shopping trip south of the border, but then the reporter started talking about how bad the rising dollar is for Canadian truckers, my little moment of joy got squashed by feelings of fear for the economy and sadness for the truckers. But I chose to use that feeling to guide my actions and change the damned radio to a station that was playing soothing music that took me back to my nice memories. Bad news makes everyone feel bad and yet we willingly expose ourselves to it relentlessly in the name of what 'social awareness'. How can we justify trading off our mental, emotional and physical health for a cursory knowledge of current events? I know that from reflecting on my own life and from watching Emily suffer so much that we ignore our feelings at great peril. But man oh man, it's gonna take a lot of work to change 50 years of conscious and unconscious habits. How ironic that the song, 'We've only just begun', by Karen Carpenter, who died of anorexia, is rattling around inside my head as I ponder this stage of treatment.

Well I gotta go finish cooking up my newest recipe, peanut chicken noodle something or other. Fingers crossed that she'll like it.

"Having a social life is a lot of work"

2009-10-19T09:52:00.000-07:00

Thursday evening, as Emily was trying to line up her social calendar for the weekend, she remarked that "Having a social life is a lot of work". That one little phrase, caused a mini avalanche of emotions in me. I was relieved that she is engaging with her friends, which she hasn't really done in a year. I was saddened to think that she has been missing out on so much living. I was dumbfounded, yet again, to realize how oblivious I have been for so long. I was filled with hope that she will continue to stay engaged and experience the joys and challenges of adolescent friendships. I was amused by her sense of humour.

The weekend was full of normal person activities (NPA), including a birthday party on Friday night, which allowed Derek and I to go out to dinner by ourselves, a visit to the Farmer's Market with a friend, a Saturday night outing with more friends, a clothes shopping expedition on Sunday and the crowning achievement, doing morning snack at school with her peers (she had been joining me in the car in the parking lot for snack).

Each of these events posed significant challenges for Emily but she wanted to find a way to make them work for her. Each act of independence from Ed is a cause for celebration in my books. The strategy is to get her so engaged in her normal life that she will be more motivated to give Ed the boot. When she asked the Team about doing snack on her own, their response was, 'can you trust healthy Emily, to eat?' Which I thought was a very interesting way to put it and I will use that approach with our next challenges.

For the birthday party, which included a supper buffet, she chose to eat supper before going so that she wouldn't have to deal with making food choices there. She is allowed to eat whatever she likes beyond what we feed her, so the Team told her to eat party food if she felt like it, but to not put any pressure on herself. She wasn't ready to eat in front of her peers but she had a big snack when she got home because she was hungry. She commented that she liked being at the Farmer's Market because she was surrounded by so many people enjoying eating so many different kinds of food and they didn't even appear to be concerned about what they were eating. I am not sure if she believes she will ever get to that mind set. I know it is only since this whole thing came up that I have realized that I have to make a conscious effort to simply enjoy my food without thinking about whether or not I can afford those calories.

The shopping trip was interesting because she really loved the clothes at H&M but she had to work so hard not to let choosing sizes and looking at herself in a mirror bring out Ed. She said it was about a five or a six out of ten on the anxiety scale, the jeans were particularly hard. I guess bathing suit shopping is a little way down the recovery road. She managed to meet the challenge to the tune of a little over $200 so all in all very successful. Then we had a smoothie in the Food Court which was also tough on her, especially since there was a table of teenage girls nearby who were creeping me out with their intense stare in our direction. (I think they were mesmorized by Emily's gorgeous hair).

In spite of these wonderful improvements, she is still very attached to Ed. One of her therapeutic goals this past week was to find a way to stop focussing so much on her food at meal time. We work very hard to distract her with games and conversation but she sits and stares at her food, moves it around her plate, eats tiny bites, eats the easy i.e. low density, low calorie, foods first, complains of feeling too full to finish and sometimes she just sits there while tears well up in her eyes trying to find the strength to take another mouthful. Some foods seem harder than others. She really struggles with eating chicken or ground beef, which are the only two none vegetarian proteins she has managed to eat. I spent several hours scouring some websites for new recipes based on things I know she likes, but the vegetarian options require larger portions which she can never finish. But even with her struggles at the table she continues to gain weight. Last Thursday she was up to 106, which is really great considering how much more active she was. She is taking in enough calories and she is eating many meals much faster than she did initially. And her need to be distracted when she is finished a meal has lessened in some cases too.

This week's meeting with the team will be the first one where she will start doing some cognitive behavioral therapy on Ed. She has been doing a little bit at each session but this week she will spend a significant chunk of time alone with the psychologist and social worker and then Derek and I will join them to find out what her goals for the week are and to discuss any problem areas. I am still a little concerned with the affects of the Zoloft because although they are keeping the dose at the 75 mg level, to me she seems a little too happy, but then again I don't know who the real Emily is anymore, maybe without the depression and anxiety she is a really cheerful person.

Yesterday I felt a sense of mental relaxation that I haven't felt since all this started. It is amazing how comforting 'normal' can be, when you haven't had it for a while. It feels like the very worst is behind us, even Emily has said she feels that way too. I know there are far worse situations that a person can experience but I would not want to relive the last seven weeks and I wouldn't wish it on anyone else either. We are grateful for all of the support we have felt along the way from everyone who is out there wishing us well. Keep the jokes coming. I look forward to having a big celebration feast with all of you when Emily is ready to enjoy it too.

A flickering light at the end of the tunnel

2009-10-14T06:53:00.000-07:00

The last week has seen some amazing improvements in Emily which I can only attribute to the antidepressant medication taking effect. She is much happier, more well rested, has fewer headache complaints, more energetic, is eating a little faster and is genuinely engaging with people and activities.

She has attended four half days of school and seems very comfortable getting back into the swing of things. Saturday we had company over for Rumoli and she joined in with a mid afternoon snack which marked the first time she has eaten in front of anyone, other than Derek and I and hospital staff, in five weeks. Sunday she went to a friend's house for the afternoon which was the first time she spent time with a peer since coming home from the hospital. That was followed by her participating in a Thanksgiving dinner with my family. She took an Ativan to help her through the event and while she didn't quite finish her meal, she did have an dinner roll before we sat down so her caloric intake balanced out quite nicely especially since she also had a small piece of pumpkin pie. She took a lot of wonderful photos of all of us, many of which will make good blackmail fodder. On Monday I took her and a friend to the Fall Fair and then we went to Derek's family Thanksgiving dinner. She relied on an Ativan again but she not only ate everything I asked her to eat, she also drank some real coke and ate at least two small pieces of apple pie for dessert. I would expect her to have gained more weight this week but she has been so much more physically active that she may not have increased all that much.

Her weight last week was 104 and the weight they want to see her at is 110, so six pounds to go, at 1-2 pounds a week now seems doable. After that she will be more mentally ready to start the therapeutic work on Ed and maybe start doing a small amount of exercise.

Yesterday I wondered around enjoying a small but not insignificant sense of relief. It was not a great big huge sigh of relief because I am too wary of Ed to think huge steps forward are likely and because I am too weary to feel much of anything. But more alarmingly, Emily has started to exhibit some new odd behaviours like jumping around, making weird, almost childish, noises with her mouth, being a little more aggressive in her reactions to Derek and I, constantly moving her feet when she is sitting down and flitting from one activity to another. This morning she complained of feeling jittery and shaky on the inside and having a headache. I think, based on my web research, that she is reacting to the antidepressant. I called the team to make sure she sees the shrink when we go in for our weekly session tomorrow. Her dosage was increased five nights ago so perhaps she doesn't need as high a dose as they expected. I hope they don't have to take her off this drug because her mood has been so great since Saturday. She is even going to a friend's birthday party on Friday night, something she hasn't done in almost a year.

I would hate to see her have to go through the torture of coming off one antidepressant and starting another because that takes weeks and the Ativan is not a good alternative. On the other had, from what I have read about adverse side effects of Zoloft, she could be headed from some really unpleasant reactions including an escalation of self harming thoughts and anxiety. We will have to wait to see what the shrink advises tomorrow, but for today we have happy Emily, at least between meals.

Gotta go finish making lunch, pizza and salad, and pick her up from school.

It's always darkest before the dawn

2009-10-07T13:54:00.000-07:00

So far this week has been every bit as bizarre as the last four. The antidepressant hasn't kicked in and Emily's mood has continued to decline with a few dips into utter dispair and hopelessness. Then when she's had an anti-anxiety pills she is almost happy.

She has been unable to finish at least one meal a day, unlike last week when she finished everything. It appears that Ed is working very hard to keep control of things, maybe it is his last big fight, maybe she has to feel this miserable because she has been suppressing her pain for so long that it just needs to come out. Maybe this is a good thing, but it is a misery to witness and very scary to think that she may not get out from under the burden of this horrible illness.

Today we saw the Team and they are a bit mystified as to how best to motivate Emily because she has lost interest in everything. She hasn't picked up her knitting or crafts all week, she struggles to do even a bit of school work, and she hasn't seen any of her friends or family. She must be getting sick of looking at me and Derek! But they have decided, with our full endorsement, that Emily should go back to school tomorrow and Friday morning and see how it goes.

She is very anxious about school because she doesn't know what to tell people, she is afraid of the pressure of school work, she can't imagine what do to about snack and she can't bear the thought of wearing her school uniform skirt. Of course we can help her maneouver all of these things, but I think a big part of her reluctance has to do with not knowing who she is without Ed. She has been defining herself as the person who restricts and doesn't'eat and now she doesn't have that persona intact any more and she has said repeatedly that she doesn't know who she is without Ed.

I can't wait for her to get out of the house and have the chance to focus on something else and I am really looking forward to having 2 whole hours to myself from 8:15 to 10:15, which is when I have to circle back to the school to do snack with her.

Gotta go get supper on the table.

Better Living Through Chemicals

2009-10-04T12:33:00.000-07:00

Emily has started taking an antidepressant medication, which will take a couple of weeks to kick in and in the meantime she has an anti-anxiety medication she can take before meals to make refeeding less stressful.

The medications are meant to give her some help with getting through the refeeding because the eating disorder thrives when the brain is malnourished. It thrives because a malnourished brain produces less serotonin, a brain chemical which we all have, that, gives us self-confidence, a feeling of safety and security, causes us to feel sleepy, and gives us our appetites.

The antidepressant can't increase the serotonin but it can change the way the brain uses it which can over time cause the brain to produce more serotonin. Unfortunately in anorexics, their brains produce even less serotonin as they are gaining weight which continues until they are close to their ideal body weight which is when the brain chemistry normalizes again.

So until the brain's serotonin levels are normal, Emily will continue to have high anxiety and obsessive thinking over all Ed related issues which include, food, eating, weight gain, body image, clothes, relationships, self esteem, exercise, restricting and purging.

The energy Emily has to expend to deal with the anxiety and obessive thinking have taken their toll. She is emotionally and mentally exhausted and suffers from insomnia, which together are a recipe for the constant headaches she is experiencing. Under these conditions, anything beyond eating six times a days and activities that provide a distraction from the Ed thinking are all she can manage. But hopefully she can squeeze in a few hours of school this week and a guitar lesson. They will also provide some welcomed distraction which we hope will outweigh the angst she feels when she thinks about doing them.

Today at lunch she took the anti-anxiety pill for the first time. It really zoned her out, and it's always freaky to see your kid a little high. I will be interested to see what she thinks about the experience once she sobers up, which should be anytime now. This drug is addictive so she will only use it for the next two weeks until the antidepressant kicks in.

The antidepressant has some side effects including drowsiness which in her case is a good thing because she takes it at night and it should start helping her to sleep through the night very soon. It also causes some stomach and bowel upset but so far she hasn't complained very much about that. The most frightening possible, but rare, side effect is an increase in suicidal thoughts. She was given the drug with the condition that she will tell us if she starts to have kind of self harming thoughts and we have a 24 hour emergency response phone number to use if that happens or we can take her to emergency right away. The shrink, Dr. C. has never seen this happen in eating disorder patients so she is very confident that it won't happen with Emily, but we will have to be vigilant over the next few months.

The other interesting thing that happened this week was that we found out Emily has been lacking confidence in us using the Maudsley Approach to treat her disorder. She had been doing her own research on treatment options and she was afraid that we weren't using the best one for her, partly because she knows they aren't treating the illness yet, but also partly because Ed knows this approach is working, as evidenced by her weight gain, and he doesn't like it.

The Team spent some time talking about the need for her to refeed before she will have the mental and emotional energy to devote to the therapy which will focus on changing her thinking and behaviours. And we assured her that we felt the Maudsley was the best approach for our family but that if it didn't work we would try every other approach out there. But it wasn't until she found the Maudsley Parent website and devoured everything on it, that she became more confident in this approach. She really turned a corner on those fears on Thursday morning which in turn resulted in a really good day for her.

Unfortunately, she got sucked under by Ed thoughts yesterday when she was dressing because she spent too much time looking in the mirror which generates a host of distorted images and thinking. And today she was deeply disappointed over not being able to volunteer at the Run for The Cure, which we have done as a family for five years. Because she needs to shift her thinking from Ed as a friend to Ed as a foe, I took advantage of the opportunity to remind her that Ed was the reason for her disappointment.

On the upside, she has found enormous comfort from a couple of books she's been reading on eating disorders. And she discovered that laying her clothes on her bed can give her an idea of whether or not they match without having to look in the mirror. She's a smart girl. She'll get there.

A little therapy for the whole family

2009-10-04T08:20:00.000-07:00

It has been a week of highs and lows. Wednesday was extremely intense for all of us and Thursday was the brightest day we've had in a very long time. Friday was good, Saturday was just okay, today, Sunday, is teetering back and forth between not good and okay. I know this is a normal pattern for recovery but knowing doesn't preclude wishing for things to be better.

On Wednesday, when we had our session with the Team, Emily was reluctant to express just how much pain she is experiencing to them. She and I had talked about it the night before and I encouraged her to write down her thoughts to help her bring them up at our session, but she doesn't trust the Team members enough to let her real feelings out.

The Team spent quite a bit of time talking about the need for Emily to stop bottling up her feelings. In fact, all three of us have work to do on allowing ourselves to feel and express our anger, frustration, sadness etc., etc., etc. We are a trio of emotional suppressors and accommodaters, we don't like having negative feelings and we certainly don't like letting them out of pandora's box. But as we were told, unreleased anger and sadness causes more problems than it avoids. I am grateful that Emily will have the chance to learn how to deal with her negative feelings as an adolescence so that she won't have to carry those behaviours into adulthood the way I have. We are currently experimenting with letting our true feelings out of the bag while we are playing Trouble and believe me when I say we are getting lots of practice time in, like six times a day because we play at every meal as part of our 'distraction' from Ed strategy. I'd say that so far we have only scratched the surface of the issue of letting our feeling out, but I am planning to take it to the next level real soon. I can't wait to see the looks on their faces when they hear me yell out my frustration the next time one of them sends me home when I am only one space away from being safe.

Gotta go start lunch! Here comes those feelings of dread that she will find lunch too painful. Guess I haven't managed to let them go yet.

A Treadmill of Dread

2009-09-29T12:24:00.000-07:00

Today when I woke up, for a split second, I had no conscious awareness of the events of the last month, it was like before I knew that Ed existed, and then, like a blow between the eyes, it all came crashing in on me again. I have spent most of today either crying or on the verge of crying. It feels like I am mourning the loss of my life before Ed. While I would hate to relive the last month over again, I wish I could go back to a time before I new about Ed. Losing your innocence is a tough thing, especially when you are out of practice because you have had a such a good life that you haven't had to face that particular challenge in a long while.

After only a week of having Emily home I am feeling mentally and emotionally fatigued from trying to be 'up' all the time regardless of her mood, which ironically is quite good day in spite of mine. I am going to chalk it up to this jeeshus head cold that has been making me miserable and hope that very soon I can be more comfortable with our new life and less stressed by the constant fear that I am doing things wrong.

I have never liked being around sick people because I feel their pain as though it is my own, they call it mirroring and apparently some people are born with more mirroring neurons that others. I'm pretty sure that I got too many for my own good. For me, if you stub your toe, I can not only actually feel the pain in my toe and but I can also imagine how you are feeling in response to the pain. So I have to work really hard to suppress those thoughts and detach myself from other people's experiences. With Emily it is magnified because of our close bond, so being with her 24/7 is draining for me. In addition to working hard not to let her pain and anxiety overwhelm me, I am constantly worried that I have prepared food she won't eat and constantly obsessing over finding the right foods for her 'magic plate'. 'Magic Plate' is what they call the process of presenting a patient with food to eat, without giving them any way to dwell on it before, during or after.

I am on a tread mill of constant dread. Dreading preparing food she won't like, dreading calling her to come to eat because I know she hates coming to eat. Dreading that she won't finish. Dreading that we won't be able to successfully distract her. Dreading that her emotional pain will overwhelm her at any moment. Dreading seeing that look in her eye that she gets when she is so exhausted from being anxious, that look that just beseeches me to make it all go away. Dreading not being able to give her relief from her pain.

I have to learn how to let the dread go. Not suppress it, as has been my lifetime habit of handling unpleasant feelings, but actually let it go. I'm not sure how to learn this skill but I am sure that once learned, it will come in handy, it will be one of those transferable skills that I am always preaching about to my students.

On the positive side of the balance sheet there is Derek. Ever cheerful in the morning regardless of how much sleep he gets, ever optimistic, ever ready to do whatever he can to make things better for either me or Emily. He has been an emotional rock for us through this. And he does laundry too. My respect and admiration for him has grown to new heights over the past month. Thank you to Robyn and Jeff for teaching him how to be such a wonderful husband and father.

Gotta run, there's supper to cook!

Being Home - The good, the bad and the ugly

2009-09-26T05:52:00.000-07:00

Day three at home finds us still struggling to establish a routine that balances the work of 'getting rid of Ed' with normal everyday living. The 'Ed' work is still taking over but I recognize that it is early days and we are on a pretty steep learning curve.

The good part of being home for Derek and I is not having to be at the hospital. And while that is partly good for Emily, she really misses the feeling of being cocooned and sheltered from the outside world. She says she felt safer there and more distant from Ed. Home is full of painful memories and triggers that are overwhelming for her, even though home is also full of good things like privacy, better food, more freedom, less noise and no needles for blood taking.

Emily continues to amaze all of us, includng the Team, with her ability to identify and articulate her triggers. She has discovered that being anywhere near the kitchen makes her feel too connected to the food which she is better off viewing as her treatment. It's a little like being forced to sit in the room full of the torture implements before and after the torturing. But alas we all learned that the hard way because on her first day home she spent too much time in the kitchen, as per our normal family habits, making her anxiety level rise to an unbearable level by bedtime. And her bedroom is full of triggers as well. That is where she spent all of her timing obsessing over food, and counting and recounting calories and fats consumed that day, then planning and replanning calories and fats to be consumed the next day. She says the smell of her room, which was repainted in May, reminds her of going there to escape the smell of food cooking, so the lingering paint smell reminds of that Ed behaviour.

It is so heartbreaking for me to watch her in such emotional pain whenever something triggers that downward spiral into into that dark and twisty place of fear and anxiety. That for me is the ugliest part of this, watching her pain, but at least now it is on the outside and not on the inside festering in the form of suicide by starvation, like it was for the past year.

One of the bad parts of this process is the food planning and prep. At this stage it is relentless because I am still learning what items to serve, how much, figuring out the right combinations of food types, and then preparing it. I just finish one meal or snack and I am starting to think about the next one. But a lot of this will become second nature to me as I do it more often. It is also really tough to figure out how to time 'normal person activities' around the food. Yesterday I had an appoinment in the morning with my counsellor and then the three of us had an appointment with the Team in the afternoon, so everything had to be precisely timed to fit in the prep, eating, and travel time around the meetings. I am exhausted, and my head cold doesn't help. But the good news is that Emily has eaten everything she has been served and even asked for a couple of extra cookies and a bit of extra stirfry. And Derek and I are both finding that eating every couple of hours is making us feel much better physically and has all but eliminated the need to snack on junk food in the evenings.

It has been impossible to get our meals on a regular schedule so far, but once Emily returns to school we will have to be much more structured. Poor Dad dropped down the other evening and I had to tell him we weren't available, and we don't answer the phone when we are eating either so we keep missing calls and then I am too busy or tired to remember to call back. But we really appreciate the calls and check ins so I hope people won't be offended and stop reaching out to us.

Our meeting with the Team yesterday helped us understand what is working at home and what is not. Emily gained weight since coming home but she asked to stand backward on the scale because she didn't want to see what she weighed. We talked about some strategies for her to use when she is feeling the pull of Ed, like deep breathing and distraction. And we talked about her starting to do some school work because that will be a great distraction. I think they want her to try returning to school on a part-time basis next week so that she can have some normal activities to keep her busy.

Even though the session went well, last night at bedtime she was overcome by her fears and anxiety and said she wished she wasn't at home because Ed was constantly overwhelming her. Bedtime seems to be the worst time of the day for her. Her only relief when that happens is distraction but at 11:30 pm I don't have much left in me, with which to distract her. Today we will go to Chapters to find some books she can lose herself in. During the day she is distracting herself with crafts, she decorated a 'recovery' box with beautifully painted designs, she completed some Christmas crafts for gifts, she is knitting a recovery blanket and she is looking for more things to paint.

Now I have to go and start the snack prep and finish menu planning for the day. Kathie invited us to visit her and John at the lake but Emily isn't up for socializing yet, although she did tell me to feel free to go there by myself, which was sweet of her.

Able to Breathe Again

2009-09-22T12:08:00.000-07:00

Yesterday was a watershed day for us. For Emily because she finally gained the confidence she needed to try recovering at home, for all of us because she is being discharged on Wednesday and for me because I got to read a book called 'Eating with your Anorexic' that lifted the veil on my distorted and painful feelings of guilt. The book is written from the perspective of a mother of an anorexic daughter, and as I read her description of what she witnessed and experienced as her daughter was sucked under by the disease, I felt so much relief to learn that I wasn't alone in my ineptitude, that I literally took my first real breath in three weeks.

The author, Laura Collins, wrote, "In August before grade ten, this smart girl began to believe that 1,000 calories was too much food for one day. If she ate breakfast she felt unentitled to lunch. She referred to water as good and bread as bad.

If it were little green men she saw, instead of what she saw when she looked in the mirror, we would know what was delusion and what was not. Our family's anorexia awakening lacked that clarity.

I still wish it were little green men: I think they have a pill for that. And even if they don't, that sort of delusion isn't life threatening. Eccentricity you can live with. But this thing that was happening to her - that changed her so completely- this wasn't benign or a curious phase of dieting. This was horrifying and immediate and scary. The girl we knew was no longer there, no longer rational, although we tried to treat her as if she were. Her mind and body were fading as if her life's blood were being drained away. In fact it was."

The author goes on to describe how her doctors didn't recognize the illness for what it was even when she laid out the symptoms, the irrational behaviors and thoughts and said she believed her daughter was anorexic, her doctor said, upon examining her daughter, 'You should probably eat more, but you are still doing all right.'

It seems that part of the problem is that the actual definition of anorexia precludes many people from being diagnosed until they are so severely ill that recovery is almost impossible to achieve. Regardless of your delusional mental state, you have to be 15% below your ideal body weight and you have to have stopped menstruating for three consecutive months if you are female in order to be officially diagnosed as anorexic. So the day before you reach 15% below ideal body weight you aren't anorexic, in their eyes you are just suffering from disordered eating and it will probably work itself out. Or if you are like Emily and haven't started to menstruate you can never be technically diagnosed as anorexic even though you probably haven't started because of the starvation. So doctors, who don't see a lot of patients with eating disorders, are looking for the symptoms they have learned and are not inclined to react until those conditions are met.

The problem with this approach is that when your doctors put your mind at ease you suppress your internal warning bells and then because you don't know the language and culture of 'anorexia', you don't know that starvation causes an obsession with food that leads to reading cooking magazines, planning and serving meals to everyone else, that horrible, disgusting 'pro anorexic' websites are teaching your child the ways and means to support the disorder and that a desire for a bracelet of red beads is a way to show off your 'pro ano' life style, and a broken arm is an attempt to take your mind off the food obsession through physical discomfort. You don't know that being cold all the time, dizziness, indecisiveness and social withdrawal are all signs of starvation. And you don't know that your child's heart muscle is so weakened that a hot shower could stop it. You don't even know that you don't know.

But thankfully we know so much more than we did three weeks ago. We know what we need to do and how we need to do it and tomorrow we get to put it into practice and Emily is ready to let us put our new skills to the test at home. I know so much more than I ever wanted to know about this horrific and devastating disease. I know that I need to shed my own obsessions with weight and body image in order to be able to be a true role model for her. I know that we all need to stop wounding ourselves with negative self talk about food and guilt and carrying extra weight and not exercising enough or over exercising for the wrong reasons. I know that my issues with food did not cause this disease in her, but that this disease is going to help me to reshape myself. How ironic is that?

So here is what the next few months will look like for us:
All meals are carefully planned out to meet Emily's nutritional and preference needs.
Meal and snack times are fixed as much as possible:
8:00 breakfast
10:30 snack
1:00 lunch
3:30 snack
6:00 dinner
8:30 snack
For now she will not be involved in meal preparation or clean up and will only have to worry showing up and eating. This is to relieve her from her food obsessions.

We will take 30 minutes to eat together, during which time our job is to distract Emily from the overwhelming anxiety she experiences when eating. We will also gently point out her disordered eating behaviours which she does unconsciously like taking very small bites, eating easy foods first, not using utensils (it slows her down), eating from everything from left to right, pushing food around her plate.

Then we will spend 30 minutes together after each meal to keep up the distraction and prevent her from purging.

We will track and record everything she eats and doesn't eat.

We don't try to bribe, negotiate, threaten, use guilt or tricks of any kind to get her to eat.
We will spend 2-3 hours per week at the clinic working on the treatment by reflecting on what is working and problem solving what is not. Emily will be weighed and will receive personal therapy to help deal with the issues of body image, perfectionism, hyper self criticism and self esteem.

When she is ready she will start doing school work at home and then returning to school on a gradual basis.

She will gain control over her own eating one snack and meal at a time and as she and the team feel she is ready.

We will do little projects like dining out or having someone join us for a meal - she hates anyone seeing her eat- and letting her make some food and quantity choices.

She is allowed to help me bake cookies or muffins if she is able to partake in eating them.

We will not talk about anything remotely related to dieting, weight, calories, clothes too tight etc., etc....

I will continue with healthy amounts and types of physical activity

She will be advised on what kinds and amounts of physical activity she can perform. It's a slow transition from 22 hours of bed rest a day to being up and around for 16 hours a day. And she still isn't eating enough calories per day to support normal activities and gain weight.

Initially she isn't allowed to do any physical activity but she is permitted to go apple picking in 10 days - yippee!!!

In between meals, we are going to totally ignore Ed and carry on as though he doesn't exist.

We invite all of you to join us between meal times to help keep our lives ticking along in as normal a fashion as we ever did, not that I am claiming it was normal before!

Recovery at home is still scary

2009-09-19T13:23:00.000-07:00

Meal support seems to be going well. Emily has eaten almost every meal and snack since I started eating with her. Last night Derek joined us and it went pretty well. I thought she was doing great but today she started talking about how every bite is getting harder for her and that she is so afraid that she won't eat at home and will end up back in the hospital. I think the fact that she is afraid she will fail at home is a good sign because it means that she doesn't want to fail. She is starting to really hate being in the hospital and doesn't want to end up back here which is also great because it might motivate her to keep moving toward health and away from Ed.

It is so frustrating that she is getting better physically but the eating disorder isn't being treated yet. She looks so much better and healthier inside and out, but Ed is still controlling her thoughts and you can see how much she struggles with every bite.

I wish with all my heart that I could wave a magic wand and make Ed go away because he is the scariest son of a bitch I have ever encountered and I have seen a few ugly monsters in my life time.

A Plan of Attack Emerges

2009-09-17T09:52:00.000-07:00

The Team doctors have mapped out a plan for the next week and if all goes well Emily will come home late next week. The plan includes me doing meal support on my own with Derek joining in on the weekend. On Monday, Derek and I will get training on her nutrition requirements and start selecting Emily's meals for her from the hospital menus. This will help prepare us for meal planning at home. Emily doesn't have any say in what she eats but we can make choices for her based on what we know she likes and prep methods that she prefers. Emily gets to stay away from thinking about food choices to help keep her anxiety minimized. She told me that it was really challenging and tiring to be constantly trying to figure out exactly what she would allow herself to eat. She was consumed with thoughts about food all day, every day and now she finds it is a bit of a relief to not have to think about it. Even now when she gets her meal tray she looks at everything and does a mental calculation of calories and fats and leaves the food items with the high numbers to last.

Medically things have improved considerably, she doesn't need to be hooked up to the heart monitor during the day, she can have daily showers, she can walk for 30 minutes a day, blood work will be done once a week. Next week she will get a pass to go out of the hospital for a few hours, she wants to go to Superstore to get a sweater from the Joe Fresh line. She gained weight but I haven't heard how much and they have not indicated what her healthy body weight is. They don't like to discuss numbers with patients because they get too fixated on them.

It has been recommended that I take 4-6 weeks off work to implement the program at home. Dr. C, will provide a letter for work. We might need to remove some mirrors because it is common for patients to be a little obsessive and distorted in their physical appearance. Dr. C, told Emily to expect to not like her appearance but to try to trust the opinon of others because her thinking will be distorted.

Things I've learned to day:
She doesn't like being asked to try to eat a bit more once she makes decision that she is done, this makes want to resist eating even more.
She is still afraid of coming home and experiencing conflict with us over meals
Dr. C, says most patients end of with stronger relationships with their families after going through this treatment program
Our weekly sessions will take about 2 hours and will be at a regular day and time each week.
Apple picking is the goal
Physical activity will be restricted to normal movement required for daily actitivities until further notice and then introduced very slowly
School work comes after health, but return to school will be gradual and based on her comfort level.
She doesn't seem very interested or bothered about school work right now

One meal at a time

2009-09-16T13:08:00.000-07:00

I had my first meal with Emily today in God knows how long. The funny thing is, I didn't even know that we weren't eating together for most of the last year, or at least not approaching eating together from the same point of view. The experience was a little stressful for me, but Emily said it was way better than she thought it would be and asked me to have snack and dinner with her too.

She wasn't able to finish breakfast but she said that two weeks ago she would have been disappointed to have eaten that much in a whole day, now she was a little disappointed not to have been able to eat that much in one meal. That, in my opinion, was a very long way for her to have come in two weeks. And while I know, because the 'team', have told us that it will be two steps ahead, and one back, for now at least we are moving ahead.

I was shocked to realize how much my mental, emotional and physical mood was uplifted by hearing her say those things and by her having a good meal experience with me. I am more hopeful than ever.

Yesterday we had a funny, funny as in odd, conversation about her abhorrence of smoking, wherein I asked how she could allow 'Ed' to starve her to death, but she couldn't conceive of smoking because it was so unhealthy. She gave me a look that reminded me of kid in 'the exorcist' and replied that she didn't wake up one morning and decide to starve herself to death, but it was a gradual disintegration of rational thinking. It was a really awkward moment between us, and there was a medical student in the room witnessing the whole thing, but I can't help but wonder if it didn't strike a nerve. One thing is for sure, if looks could kill, I'd have been six feet under.

Today, I met with my counsellor for the first time and the hour was taken up with my 'telling the story' of how Emily ended up so sick and what the immediate future looks like for us. I hope that next week we can start working on my feelings of guilt and fear because I can afford to be spending energy on those feelings when we get Emily home. The refeeding process will take six hours per day, plus meal prep time, plus sessions with the team. I know I will need to take a leave of absence from work for some period of time because I wouldn't be able to do a good job at work and I can't afford not to put everything I can into getting rid of Ed and getting Emily back.

Intially i.e. the first month, Derek and I will spend every meal and snack with Emily and eventually we will probably trade off meals when Emily goes back to school and I go back to work. It reminds of the level care you give to a baby, kind of like a maternity leave. Life will be very different for us during this phase.

Distraction is the key

2009-09-15T13:41:00.000-07:00

It was so good to see Emily have a better day today. We met with Tara, one of the team members, and talked about Emily's reluctance to come home. She is afraid that she will create conflict and that we will be fighting a lot. She said she really needs a distracting conversation which allows her to eat mechanically. She agreed to let me join the nurse for breakfast tomorrow morning to start my meal support training by observing her while I eat my breakfast. Emily doesn't want people staring at her while she eats which is why she wants me to be eating too.

Emily told Tara that she sometimes fights Ed by saying that the 'ensure' has as many calories as the meal so she might as well take a few more bites of the meal. She talked about how much she wants to go apple picking and that fall is her favorite season. Tara suggested she use that desire to help her fight Ed during meal time but I don't think she is ready to concede that apple picking is better than restricting but we'll see.

We also talked about Emily identifying things about her home life that help or hinder her to fight Ed. I needed to check in with her to make sure that my own issues with exercise, food and body image don't undermine her confidence in me. She said that my long bike rides seem excessive to her but that going to bootcamp and running a couple of times a week don't bother her.

Other things that distracted Emily today: knitting, meeting two Ottawa Senator hockey players, hanging out in the teen lounge, more knitting (not sure if the knitting isn't a little bit 'ocd')

I am very tired today after staying here until 11:00 last night. I hate to leave so early in the evening but I need to be here for 8:00 am to share breakfast with her so it's early to bed tonight.

Update - Monday, Sept. 14

2009-09-14T10:18:00.000-07:00

Well it's been an interesting day on the road to recovery. Emily's anxiety over her meals is increasing steadily, her weight continues to drop, and the mix up with her breakfast meal this morning (it had a slice of ham on it) set off a series of melt downs for her. After she very reluctantanly agreed to try some non-vegetarian meals, she was angry and upset because she feels like her life was much better before we found out about Ed. Now she is stuck in bed, being forced to eat - hospital food, being forced to stop being vegetarian, and not able to do any of the things she loves. She is too ill to understand that Ed caused these things to happen, she just feels like us finding out about Ed caused these things.

But on the plus side today she was granted two hours, one hour at a time, of wheelchair time, she got a bath and she knitted a cell phone case, thanks to Nana's knitting kit. And she has decided to spend 30 minutes a day on homework.

On the down side, Dr. C. told me today that Emily is indeed very sick and that Ed has a very strong hold on her. Emily doesn't feel like she has much hope of getting better, but all of us, including her team believe that she will make a full recovery. Dr. C, has decided that she will start Emily on anti-anxiety medication as soon as her heart rate is a little better i.e. Thursday. She believes that Emily's anxiety is contributing to Ed's hold on her because it is human nature to revert to the behaviours that give us comfort when we are afraid and in Emily's mind, Ed gives her comfort.

Dr. C. mentioned that she thought Emily would be medically stable by early next week and then hopefully she will be ready to come home to continue the refeeding there and the treatment on an outpatient basis. Emily, however, doesn't feel comfortable coming home yet because she is afraid Ed will be able to trick Derek and I, and that she won't eat for us the way she eats for the 'authority' figures here in the hospital. So we need to work on building her confidence in a home based program. Derek and I have been given some materials to help train us in meal support and we will get to observe the nurses in action and then practice with Emily here in the hospital and ultimately take over that role completely before she comes home. We met a new team member today, Judy, who described her role as getting between Emily and Ed and that will be our role too.

I am suffering from a severe case of information overload after my sessions with the team members today. I am too tired to go to choir tonight but I hope to make it next week. And I am going to see a counsellor this week to get some help dealing with my own 'stuff' that is emerging from all of this.