It was early last Saturday morning and I breezed downstairs to head out for the day. I walked through the kitchen on the way to pour myself a cup of coffee and saw my youngest sister sitting alone at the table, picking at cold egg whites and a couple of blueberries and calling it a meal.
I lost it.
I looked at her and said as emphatically as I could ” You are stronger than this!” and stormed off to work.
We talked back and forth later and I tried my best to let her know that it wasn’t her that I am angry at. It is her eating disorder. Her stupid, selfish, life taking eating disorder.
The one that makes my words catch in my throat when I see her in a tank top or towel, headed to the shower when I realize how incredibly small it has made her. So small I want to cry but instead I look at another member of my family and manage some sad laughter.
The one that allows her to think she can regularly eat portions that do not even support basic body processes and be ok.
The one that has robbed her of so many years.
The one that has made me realize that as long as it is here, I will most likely outlive my baby sister.
THAT is why I am angry. I think another reason I reacted is the sheer helplessness of dealing with anorexia. Everyone always has an answer: Have you tried this? Some relative tried this and it WORKED. The problem is that after a decade, we have tried everything and done everything we can. I think a decade ago we thought that by this point it would all be over. And I think at this point we have realized it never really ends. And sometimes, there is a deep guilt in being happy. Because I don’t know what it feels like to wake up everyday and not feel anything other than the horror of needing to face your greatest fear at least three times that day. I think it is the same guilt that many people feel when a loved one is hurt and they aren’t: Why not me instead?
So in answer to my insensitive comment about Jolene being stronger – she is. She is one of the strongest people I know. But an eating disorder is just so equally strong and she fights it every day. Everyone gets tired every now and then. Even the people who are in the sidelines with her.
And as we come to terms with the fact that Ed is here to stay and that we need to find a way THROUGH instead of a way OUT, I feel so very blessed to call Jolene my sister.
No matter where life takes us – to me you are perfect.
Last night, my mother gave one of her presentations of our family’s journey through anorexia to a local group of women.
This is a noteworthy event because I breezed in to watch the presentation after teaching a spin class, only to realize that the presentation was over and my mother had decided to call my sisters and I up to the front to field questions. Thanks for the heads up…
Regardless, we stood in front of the ladies and questions slowly went from being directed at us as a group to my littlest sister, Jolene.
I was so proud of her last night.
She calmly explained that the second my mother will turn her back, she will throw out the salad/sandwich she is “eating” without hesitation.
She explained that it is easier to lie to our mother about what she ate then to actually eat the food.
She shared that how she helps other girls with eating disorders is to tell them all the things that she doesn’t believe about herself: That they are beautiful, strong and worth something. That they will beat the disorder.
I told them that Jolene is the strongest person I know because she wakes up every morning and knows that she needs to face her greatest fear at least 4 times that day…and she gets up anyways.
We all calmly spoke about the tragedy that has encompassed our lives over the past decade. Because it is a reality. It is ok. We have learned that we can trust Jolene with anything and we can trust her eating disorder with nothing.
We have learned that she and her disorder, ED, we call him, are separate things. It is not her fault, we are not disappointed in her, and we have hope in her recovery.
After the session closed, Megan whispered in my ear – “Let’s grab the littlest one and go get some coffee together.”
So we went.
We left all of the heartaches that we experienced this week, this month, this decade and we hightailed it out of there together. We spent the rest of the evening in a coffee shop, laughing uproariously at the stories we had to share and the ideas we brainstormed.
I had a post all drafted up for today, but I threw it out the window in lieu of something else much more important.
Christmas seems to be a loaded time for many things; our tables are laden with wonderful food and our week is saturated with family events. It is a happy time. We are surrounded by the people we love and a feast almost every day of the week.
For an anorexic, that is the problem.
Jolene has been doing very well for the last while. She found a medication that worked with her and she had been actively trying to surround herself with a support network and positive influences.
The tricky thing with an eating disorder is that it is subtle. It slips up quietly; a few discouraging words from a person here, an interaction with a trigger there, and suddenly, what was looking like a breeze slides into battle field territory. Suddenly we notice that we are losing her again. The voice that we hear is no longer her, but her eating disorder. Her decisions are clouded by her impulses.
I am not saying Jolene has gone backwards. Any recovery is full of ups and downs. But Christmas strikes a deep fear in the heart of someone who struggles with food and makes each day a struggle.
We need to find a balance with the Christmas propaganda that you will need to “Lose Those Holidays Pounds” which assumes you will GAIN anything at all or suggests that food is a thing to be feared rather than celebrated. We need to find a way to celebrate sensible eating and the wonderful gift that our bodies are. Yes, we come in all shapes and sizes, but that is what makes it amazing.
This Christmas, eat your vegetables, have a bit of pie, and celebrate how beautiful you are and how blessed you are to be surrounded by family and friends.
And if you think of it, please send out positive thoughts and prayers to Jolene. Christmas is never an easy time for her, but we are celebrating the fact that it is her first Christmas with us in a while and surrounding her with support and love.
In a Canadian November, the world loses it’s sparkle, I think.
It is that blah time between the heat of summer and the magic of Christmas and it is full of rain, cold, grey skies and men with moustaches. As we creep into the first week of December, I think November stays with us like a cold virus that we cannot shake or like a damp blanket. It is grey.
I have been hearing this echoed in my friends conversations. Saying that this is when the negative self talk comes in. When the loneliness sets in. When life just sucks.
And Christmas comes and is wonderful, but then we are right back to the grey.
There are many reasons for this, I think. There is the lack of sun, of course. (Take your Vitamin D, friends.) But a host of other things. People venture outside less because of the cold. If this is you, try to go on a walk to get some fresh air. If you need a reason to get out of the house and get walking, my friend has a blue heeler for sale who has a lot of energy…
Max
Do small things that make you happy. Read a book or magazine that you love. Buy yourself some flowers. Call a friend.
In my circle of friends, there are a number who struggle with anxiety and depression. Having a sister with anorexia and depression, it is no longer taboo in my house or mind – which is how it should be for everyone. If you are struggling from either anxiety or depression, speak up.
Tell a friend who will understand.
Dive into a hobby (I know when I have gone through difficult times in my life, I find a marathon or goal race to train for to focus on).
And talk to a professional or doctor.
And everyone, no matter where we are in our winter journey, should start each morning with a healthy dose of this:
or this:
I love you guys. I felt from some of the things I have been hearing that we all could just use a warm fuzzy and a hug today.
If you need something completely mind numbing, here is what I have been writing this past week:
We have someone in our family who is just..awkward.
We want him to leave and we have told him this, but he follows us everywhere. We tried to leave him in the mountains of Utah, but he slipped inside a small corner and followed us home.
He makes us cry in public places.
He makes relationships really hard sometimes.
He makes life really hard sometimes too.
I am not talking about my father, the only male in our immediate family- rather the enigma that our family has coined TED (acronym for The Eating Disorder).
It has been a while since we have talked about this because sometimes it is easier to just not. After living almost a wretched decade with TED and hoping he will leave us, he still continues to explore his regular haunts within our family.
Jolene has been back home for a number of months now and she is doing great. She is working at a local restaurant and spending time with a close group of friends, going to Marine land, camping and canoeing. In other words, trying to take her life back. But there are some days when we still notice that all is not well and Jolene needs a little bit of extra support.
There has been a lot taken from us in the past decade, even though we have become stronger. Jolene finds it especially hard to connect with our father and myself, something we are still trying to sort out the pieces from.
Last evening, I found myself getting angry over a trivial matter and finally gave up and told Jolene what I was really upset about; how I wish we could have relationship – something that has been stolen from us over the years of fighting the monster of anorexia. It is those moments of pure honesty and yearning that we win another battle against anorexia.
Things are not perfect, and I don’t think they ever will. But they are ok and for now, we are holding onto that and forging on in the fight of our lives for this precious sister and daughter that we are so blessed to call ours.
Together we are so much stronger. Ladies night out with makeovers and dinner.
As a family, we fiercely want to prevent this from happening from anyone else and to help others who are walking the same path. We have some important events coming up that we would love to have you join us in.
1. Next Sunday (August 5), The Optimist Club of Petersburg is hosting a Breakfast in the Park in support the awareness and treatment of Eating Disorders. It is from 9 – 12 pm at the Petersburg Park and they have an amazing menu planned! My family and I will be there and would love to see everyone out! For more information on the event, click here.
2. On September 18 – 21, my father’s business will be hosting a fundraiser for Eating Disorder Awareness at the International Plowing Match. They will need at least 25 volunteers to sell Home Hardware pails and ED bracelets & mittens over the 5 day Plowing Match. We will be looking for volunteers who can commit to a full or half day at the event by August 1, 2012. (Or as soon as possible.) If you are interested in helping out and in raising awareness, please click here.
Thank you. We appreciate this more that you will ever know.
Only an extra ordinary person can get an eating disorder.
Because it takes extraordinary strength to fight one.
It is National Eating Disorder Awareness Week. Remind the people in your life that you love them and that they are of irreplaceable value. If you want to tangibly support NEDA, consider buying a pair of mittens with the recovery words Freedom and Courage in the NEDA purple.
Contact me if you are interested.
I am Florida-bound to reunite with a certain special sister that I haven’t seen since October. Au revoir!
But it does remind me that National Eating Disorder Awareness Week is swiftly approaching and I am hoping to get my life sorted before then because I am taking part in some community awareness that I would LOVE for you to join in on.
NEDA Week is February 26- March 3 but I am a part of a pre-awareness campaign and will be speaking on February 9. Because I have absolutely zero computer skills, I just copied and pasted the text of the flyer below. Just another way that you can support those with eating disorders.
I remember when I went to hear a recovered anorexic speak when I was struggling with my eating disorder in high school. It wasn’t that I wanted help or even planned to get well, I was just curious on what it was like on the other side of things. I was wanting to know if it was worth it. Now I get to be that person that gets to tell them that it IS worth it. And so are they.
I am going to use this photo of me when I was a child. Every one deserves to smile when they look in the mirror.
In honour of eating disorders awareness week, 2012
FREE COMMUNITY EVENT
EATING DISorders:
STORIES OF RECOVERY
February 9, 2012
at 7 P.M.
St. Andrew’s Church
54 Queen Street North (at Weber)
Kitchener
(Parking and entrance at rear of church)
Please join us in witnessing stories of recovery for persons who live with an eating disorder. These courageous individuals will share their experiences, with personal insights on what worked best for their own recovery. Family members will also talk about how to support a child or friend with an eating disorder. Local treatment providers will be on hand to answer any questions.
Sponsored by EDAC (Eating Disorders Awareness Coalition of Waterloo Region) and Trellis Mental Health and Developmental Services Eating Disorders Program.
Christmas dredges up a lot of different feelings for me and I have to say I am relieved. For a very long time, I have not felt much regarding Jolene; people ask how I am doing and the answer is fine. I am not lying. I am. I have had this discussion often with my family and others dealing with tragedy. It is an excellent tactic of the brain because we are not meant to spend our days in our pajama’s, eating ice cream from the carton and wallowing in our own tears and misery because that will not help anyone. So we just feel nothing but a lot of love for Jolene.
But as Christmas approaches, I am feeling it all. Frustration, anger, guilt and sadness.
Frustration with the fact that Jolene seems to be going backwards. That her voice sounds smaller every time I talk to her and her desire to fight her eating disorder doesn’t exist. It is so much money and so much time from my family, the government and friends and it sometimes seems for nothing.
Frustration with the well meaning people that touch my arm and tell me “She is going to be ok and completely healed, just wait.”
I am sometimes tempted to whirl on them and ask them what secret knowledge they have discovered that my family has neglected to unearth along the way. How they can flippantly promise such an unknowable thing? Jolene may never be healed and that is something we need to work through every day. It is like telling a family member of a level 4 cancer patient that “They will live, just wait and see!”
Anger that Jolene is needing to miss Christmas with our family.
Anger that the monster has grown stronger and she is trying to self harm so they cut her nails to the quick and put gloves on her, like an infant. So she will spend Christmas day sitting on a couch, little hands in gloves, eating food that she loathes to touch and without the tangible support of loved ones.
The other day my mother came up to me, put her head on my shoulder and said in a small voice, “Some times I wonder where God is.”
And I guess that is where we are all feeling as Christmas approaches. What we all felt when we heard that Jolene’s Christmas wish was to come home for Christmas, say good bye to us, and go back to Utah and allow the eating disorder to take her life.
Guilt because I am moving forward, living a wonderful and colourful life while my sister cannot do that. Guilt because I live for the moment where I can wake up to my life and Jolene lives so she can go to sleep and forget. Guilt that I have a beautiful man in my life that makes me feel like I can accomplish anything, that I just received three of my dream jobs in the last month teaching enriched high school english, writing for the Waterloo Region Food Roundtable and working at Alternatives Journal. Guilt that I can laugh till I cry with my mother, talk for hours with my sister Megan and discuss ideas about life and the world with my dad.
I am living and moving and I feel like I am leaving her behind.
So naturally, this conjures up a lot of sadness right now. You will not find me in my pajama’s, face planting in Ben and Jerry’s but you may find me crying in the car or at random inopportune moments.
Like on my run this morning when Christina Perri’s “Jar of Hearts” came on my iPod because that is the song Jolene had chosen for her recovery song.
She chose it as her message to the Eating Disorder this summer when she came home. And that hasn’t changed, but she just let her heart get broken again.
Last week, we had family therapy session with her councillor and her and as a family we were supposed to say what our hopes and dreams were for her in the future to show that there are people who believe in her when she doesn’t believe in herself.
She responded “Well, I like everything you said, but I think I will just let you all down”.
So I began thinking that it was about time she had a jar of hearts that she can see every day. Full of dreams and hopes and memories and inspiration that are not just from our family, but our community and the world. So I am collecting them from you. I am taking the messages you said, placing them on a heart and sealing them in a jar with the lyrics to the song and sending it with a local family that is driving to Avalon Hills to see their daughter who is with Jolene there. This way, Jolene can get a message of hope, love and a little laughter for Christmas so maybe she won’t feel so alone, so hopeless and so sad.
So if you want to join in on this, please send your message to me in the comments below, my e-mail account or bring it into Home Hardware in Wellesley tomorrow. I will be accepting messages until 5 pm tomorrow. Thank you to everyone who has already sent some, you are encouraging our entire family with them.
If you are unable to send a message and want to help Jolene in some way, we are selling Eating Disorder Awareness Bracelets at Wellesley Home Hardware and Anna Mae’s Bakery for $2.00 with the message “Freedom” and “Courage”. If you are unable to make it to those locations, contact me and I will get your order to you.
Our family and staff at the Wellesley Home Hardware Building Centre worked all week to prepare for an event that tied together our Fifth Anniversary at our new location and an event to create awareness about Eating Disorders.
We knew that Nedic (National Eating Disorder Information Clinic) would be there with information as well as some local families that have girls in Avalon Hills to be faces behind the disease for the many people that came to support us. We also had rumour that Elizabeth Witmer, MPP was going to come hear our story and present our story and other’s stories to those who can make a difference.
What we didn’t know was that the local media and CTV was going to show up to raise awareness. And that the story is the second in news.
We were so honored to have Shannon and Dawson stop by to meet us and give us hope that recovery is possible.
One thing we have decided is that even if Jolene would never see recovery, we want to do every thing we can to prevent the disease or ensure recovery for other individuals struggling with an eating disorder.
Looking a bit stiff....
We shared our story alongside other families who had daughters with eating disorders to Elizabeth Witmer
Elizabeth being interviewed by CTV
A father/daughter briefing
I am so excited for what this event means to our family and community. We are taking steps in the right direction to establish In Province Treatment for young people with eating disorders. We listened to many heart breaking stories yesterday and we pray that we can put a stop to the difficult situations created with out of country treatment.
Thank you to every one who showed up to support our family, our event and Jolene. And thank you for everyone who donated their time, their money and their resources to make it possible.
We are so grateful.
Jolene called today at noon and our family told her all about the event. Jolene had written a letter to be read as a plea to establish in country treatment which Elizabeth Warren asked to have a copy of to share in her work. Jolene is not doing well right now; she is still on couch rest a month into the program (meaning no activity as a result of not eating her food. She literally goes from the couch, to the table to her bed.) Please keep her in mind as it is not easy.
Despite that, so much good came from yesterday. I was asked to speak at an event hosted by Grand River Hospital during Eating Disorder Awareness Week in February as a recovered anorexic to give hope and answer questions of those who are battling the disease. I am so excited to see where it will go from here.
In the middle of the night, I heard the muffled sounds of my family getting ready and at 3 am, I heard the door slam with a note of finality.
Jolene is leaving us again. She is strong, but anorexia was stronger this time. My parents are boarding another plane to take her back to the States and do another batch of paperwork and prayers hoping for government funding. And then leave her there again for as long as it takes.
I watched her pack her bags with the stoic silence that decended on her the moment she found she was returning to Avalon. What do you say to a person that would rather die than go back to a treatment centre for a disease she believes she will never beat? How can I reach her, show her I love her despretely?
The answer on her last night home, like always, was animals.
Jolene, Portor, Wilson, and myself
That picture was taken a while ago, but it sums up Jolene. I recently told her that I see a beautiful young woman emerging from her small body. One with passion, purpose, interests and abilities.
She told me she hopes she can use them and she is not crippled by anorexia forever.
I don’t often talk about her or anorexia, partly for privacy and mostly because it has just been a normalicy for almost a decade. But every once in a while, it will peek over the safe box of normal feelings that you build and remind you how much it does hurt to see a beloved family member suffer every single day of her life. And how angry you are at the disorder for robbing her of everything she deserves.
I am not asking for sympathy, but I am asking for prayers. I am not praying for anorexia to leave immediately, I am just praying for a miricle.
