Ode and Wandering

This one is pretty raw meaning both that I did very little editing and that it made Bree feel very vulnerable. Everyone has always been very supportive and respectful with us sharing and I ask that it continue. Thank you!

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Ode by Arthur O’Shaughnessy

We are the music makers,
And we are the dreamers of dreams,
Wandering by lone sea-breakers,
And sitting by desolate streams;—
World-losers and world-forsakers,
On whom the pale moon gleams:
Yet we are the movers and shakers
Of the world for ever, it seems.

I’ve read some strict interpretations of this and what it means but I’m going to go out on a limb and say that poetry can be subject to different interpretations.

Bree is a music maker and dreamer of dreams but she is wandering in a desolate place. Her mind is full of fear and doubt, forgotten by the world but in that place she is finding friends and hope and strength and as those ideas grow she will move and shake the world and the world will never be the same.

The reason I have so much hope in this is because I have conquered, and watched others conquer. Check out our friends the Fellow Wanderers. This poem is about creation, it is about ideas, and I think it is about having the courage to wander, to get away from society and what the world thinks. Wandering helps us become the movers and shakers of the world that we want to create. But that takes courage that not everyone has.

Bree and I had an interesting conversation about her eating disorder. She knows that I know what’s going on, but she does it anyway. She wants to be better in her heart and make changes to get her on the path to recovery but when facing the moment head on she gives into her fear. Not all the time but often enough that it sets back her recovery.

I have taken a less aggressive approach to her recovery, she knows I’m here and I want her to fight and she wants that too, but wanting something and acting on it are different. I know the only way this will stick is if she wins her own battles and conquers her own demons. She has good friends and is seeking professional help but in the end that is only help. They cannot recover for her, and neither can I. They cannot put food in her body and keep it there. She has to find that change inside herself and I can’t wait for that to happen.

When she finds that courage, that hope, that conquerer there will be no stopping her. She is already one of the strongest people that I know and she will change the world when she realizes that. I think that potential is also something that scares her but when she is ready for it, faith and hope and love will replace that fear and that will be a wild ride.

Fellow Wanderers

The common thread of these fellow wanderers is that they recognize that we are valuable as individuals. We all have value and have an opinion that is uniquely ours. Embrace yours! You are you for a reason. We should make an effort to understand one another. We are all wandering and conquering.

Today is a shout out day. I want to share some stories of fellow Wanderers and things that keep me inspired. I will mention a few today but I’m planning on more detail in the future. I always try to be inclusive, probably to a fault, so to be clear these will be businesses, blogs, groups, etc. that inspire me. Obviously family and friends support and inspire too and I count some of these people as both and therefore the disclaimer was required. 🙂

Wanderers go by many names. The definitions I’ve found include those who know where they are going but choose to embrace a journey, they are dreamers, music makers, warriors, and conquerors. We all struggle with different trials; anxiety, depression, ED, shame, guilt, physical disease, cancer, infirmities… we all have our battles that we must face. A friend, and family member of mine is one of these conquerors and he has a story to tell.

The following comes from the Our Story page on The Conquer Shop:

“My name is Noor, creator and owner of the The Conquer Shop. I am an engineer, a businessman, an outdoors enthusiast, a depression survivor and a Lupus conqueror. We built this site as a way to honor all those who are fighting with diseases such as lupus, cancer, depression, anxiety, ptsd, and any illness which are a consequence of the world we live in.

“You see, I grew up watching my own mother struggle with severe pain for years; every day was a struggle just to move about and get her daily work done. Yet she did. She raised me and brother with a determination that would not die.

“Little did I know that I would also become familiar with chronic illness in my own life.

“My Mom always used to say that someone who has not experienced chronic illness cannot truly understand what it is really like: the daily struggle, the fear of a major attack, the wish to just be free.”

From The Conquer Shop home page:

“Together We Conquer
Our Mission is to stand together and show support in the face of Cancer, Lupus, Depression, Diseases and Adventures of all kinds. You are not alone; together, we Conquer All The Things.
A portion of every sale is donated to St Jude’s Research Hospital to help children fight and overcome their battles with cancer.”

I want you to finish his story so you can see the hope and joy that he has found in conquering. Please follow the links and read his story. Explore the shop and support a fellow Wanderer.

 

I heard a quote once that I will butcher here (I’ll still put it in quotes though) and if you are who I stole it from feel free to take credit in the comments. “Telling someone who is having a great day that their day can’t be that great because someone else just made a million dollars and someone else just scored their team the winning goal is the equivalent of telling someone who is depressed that other people have it worse so they shouldn’t be sad” with that in mind this next group is amazing and is not shared because I want to show how much worse other people have it or to shame anyone into thinking their service/contribution is inadequate. These are just amazing people doing amazing work. The group is OUR Operation Underground Railroad (Facebook page). They rescue people, particularly children from slavery and many of their operation focus on sex slavery. There was a different group supported by Ashton Kutcher whose video went viral when he testified to congress. This group does similar work at home and abroad. I’ve donated to them in the past and plan to do so in the future.

Another inspiration is one of Bree’s best friends. She started a website called The Tailored Market (Facebook page) to sell women’s clothes. Her goal is to create a place where numbers don’t matter, which is hard with clothes. She shares beautiful stories and embraces everyone who comes with an attitude of acceptance. She shares her own personal stories of her battle with ED and is doing what she can to raise awareness about the way we talk to one another and ourselves regarding our bodies.

The last one I want to talk about is the non profit More Than Shame (Facebook page). Their mission is to try to raise awareness of the debilitating effects of shame, and how its different from guilt. While also promoting ways to combat its effects.

‘Shame corrodes the very part of us that believes we are capable of change.’ -Brene Brown

Shame tells us we should suffer in silence, and not bother anyone with our internal struggles. It tells us that if anyone knew what was going on in our lives they couldn’t possibly love us. So we suffer in silence, and we become sicker. It is not until we realize we are MORE than shame, and there are people waiting to accept and help us on our roads to recovery that we can truly heal. My favorite video from this guy/group is called The Silent Epidemic.

Thank you for giving value to my voice. The common thread of this post isn’t Eating Disorders. Only one (maybe two) of the above groups related to body image. The common thread is that they recognize that we are valuable as individuals. We all have value and have an opinion that is uniquely ours. Embrace yours! You are you for a reason. We should make an effort to understand one another. We are all wandering and conquering. The more we help each other the better we will understand our own journey. That sounds like trickery, how would I learn about me from helping somebody else. To which I answer, when we get outside ourselves by helping/serving/supporting others we can look back and see ourselves more clearly. Maybe we see someone struggling, pleading for support. Maybe we see someone who isn’t as flawed as we thought. Maybe we realize in that moment that we can let someone in to help us, like we just helped someone else. I feel like a challenge to perform random acts of kindness is in order. Please go help someone in a small way today, not asking for anything in return, and see if what I’m suggesting works. Or get really brave and ask for the help you need. Good Luck! I will report on mine soon and you should share or comment with yours.

 

What I wish I’d known coming in…

Dream together, plan together, set goals together. It is so cliche but “‘Together’ is my favorite place to be…”

While this is written with specific people and circumstances in mind (newlywed or about to be married) . I encourage all to read with an eye to self reflection. Today is a new day, today can be different, I/you/we can be better today than yesterday!

Someone asked me what I wished I’d known about getting into a marriage with someone battling ED. I’ve spent some time reflecting on this idea and what I would tell somebody about to take that plunge. I realized that much of this advise (in fact, all of these ideas and concepts) has helped our relationship and it’s not all about ED. It’s about loving someone for who they are, with all their faults and baggage and letting them love you too. Because I have news for some people, you have faults and baggage too…

When we were first married I didn’t know about ED. She had kept it hidden for years before I came along and in my naivetĂ© I didn’t see the symptoms or signs. Today I might because I’ve educated myself but in the beginning I didn’t know what I had gotten into. After those first rough years of not knowing the true cause of the deep pain she obviously had, I learned about ED and began to understand. When someone says “knowing is half the battle” they aren’t kidding. Just knowing about ED improved our relationship. I knew where some of the emotions and distance was coming from. This didn’t stop my frustrations at times but it did improve my understanding and acceptance. Just to be completely honest, there were times that were really hard and kinda sucked.

When ED is in control there is little you can do about anything, meals, money, goals, future, even intimacy. My goal is always to be loving and caring and let her know what I feel and think but I’ve learned to be cautious in my compliments. I find her beautiful all the time and I’ve learned to communicate to her that beauty is more than body image or physical observations.

For example, I love how caring and kind she is to those in her care. She can also be brutally sarcastic, especially when she sees something silly or wrong. She always makes friends even though she’s scared to do new things or meet new people. I admire all these parts of who she is and, if I could, I would have focused more on them earlier in our relationship. Notice none of these things have to do with food, weight, size, etc.

Everyone should focus on size less, healthy is good but our body isn’t everything we are. We can’t forget that our spirit, our soul, also needs attention too and for someone battling ED it probably needs more attention. You can’t combat a disease with a wounded soul. I would have focused more on our spirituality. I would have focused on being good and kind more. Not bragging or anything, being good and kind is something I have always done and believed in. My parents engrained that in me when I was young and I’ve strived for that my entire life. However, with all the stresses that being newly married and starting a life together brings I didn’t focus on it enough in the beginning.

The problem with these ideas is that they take practice and patience. They also require a deep understanding of the individual, these are things you have to learn. I encourage patience and love and err on the side of quiet and kind. This is a challenge because you will feel frustrated and angry. You will feel unappreciated and unloved because ED is getting all of the attention. There have been many times that I have not handled this well and probably accidentally set back her recovery. Not by directly triggering about food or body image, even before I knew about eating disorders I wouldn’t have done that, but through lack of compassion or through my frustration when she needed love.

Everyone has these experiences on some level. We are learning to share our life with another human being. Agency, or free will, is something that I cherish. When we are married we agree to share that with our spouse. If you are religious, we also share that with God. My experience is unique in some ways but should sound familiar in many others. I encourage you to find your path together. The more together you are on the journey the closer you’ll be at the destination. Like with a compass if you are off course by 1 degree you will be off hundreds of miles by the time you are supposed to be at your destination. If you stick together without even one degree difference you will end up at the same place.

Dream together, plan together, set goals together. It is so cliche but “‘Together‘ is my favorite place to be…”

Intro to Triggers

This week is Eating Disorder Awareness Week… Likely only those who are already familiar with the subject are aware of this. Which is kind of a sad statement given that an estimated 8 Million people (3% of the U.S. population) have an eating disorder. I also suspect that this number is low given how people react and think about the subject.

I can only imagine how many people this impacts indirectly. Friends, family, even acquaintances will see the effects. Today I wanted to broach a subject that will be more difficult and sensitive. I wanted to discuss triggering. Those things that cause recovering people to revert, or they might not even be headed in a positive direction and the trigger makes their behaviors worse.

**A quick note on triggers. Obviously triggers are real and can cause someone deep pain. In todays context there are jokes about people being “triggered” over things that others think are silly. I’ll admit that I find some of them ridiculous. I believe that we should be mindful of our fellow man and help each other where we can. I had a hard time expressing these thoughts because I don’t want to downplay triggers and I don’t want to turn people away who have a misconception about triggers. To be clear – we are talking about genuine psychological triggers not people who get easily offended. (see urban dictionary or your favorite internet search for common meanings of trigger, triggered, triggering)**

Some triggers we need to face head on and others we need to avoid until we are strong enough to face them, or face them in increments instead of all the time. I’ve observed that Bree does better with food when she doesn’t prepare it (However this observation falls apart when people are around, e.g. potlucks, extended family dinners, parties, etc.).

I’m assuming, and we’ve discussed at length, that when she is around food while preparing it she is triggered and won’t eat that meal as well. I’ve found that when I prepare a meal and she helps in other ways that things go a little smoother. She’s not around the food as much and is less triggered. Leading her to eat better. I haven’t discussed this with any professionals so I don’t know if this is good or bad BUT I’m happy to play this role.

I should probably also note that this doesn’t always work, I’m trying to keep this real but my optimism pokes through and as I reread things they always seem super successful. This is not the case. These last couple weeks and months have been rough on this front. While other things go better, this slides downward. We pick up and make progress but it’s a long hard road.

It’s interesting that what works for one person doesn’t work for another and what triggers one person won’t trigger another. Even with the same eating disorder. We are all unique and so are our behaviors and challenges.

The other discussion I want to have about triggers happened on Facebook.

Two quick notes: 1)  I won’t use names these are two great people and 2) in no way is this meant to make them look bad. In fact, I admire and respect the way this was handled and love that they were both looking out for my wife.

Bree posted a picture on Facebook, a friend mentioned something about Bree’s body. It was a nice compliment, something many women face and would love to hear. However, it COULD be triggering for someone with ED. One of my wife’s friends who has shared her own experiences with ED commented on the comment mentioning these triggers, and specifically what it could have triggered for Bree.

I thought to myself that I was about to see some fireworks. Everything was very polite but also blunt. So I thought that would cause a negative reaction. I was very wrong.

These two people don’t know each other, and I’ve observed too many misunderstandings on Facebook to be optimistic. But guess what, the first lady replied politely and asked a genuine question about what she could say that was different and less triggering. The whole thing was an insightful conversation that really touched my heart.

Having that be touching may sound weird because it seemed like an innocent conversation. They were respectful, thoughtful, and insightful about how we should treat one another and learn from each other. Needless to say, I was impressed with the quality of my wife’s friends. These people were truly trying to help and then truly trying to learn.

On this topic specifically, rather than focusing on physical body image in our talk/compliments we could focus on deeper more meaningful observations about those we know. I think that this is a positive change to our mindset and would help avoid many of the triggers that are out there. But not all triggers can be eliminated and we can’t expect others to know what they are. We need to be loving and forgiving to ourselves and others when we are triggered or cause someone to be triggered. We are all always on the road of self improvement, I know that I need mercy and grace as much or more than everyone else.

In searching for a way to conclude these thoughts my mind keeps turning to the general publics view on triggering. I mentioned it briefly up above implying that it might be an over used term. I keep reminding myself that just because it’s overused doesn’t mean that it doesn’t exist and that it’s a real thing that impacts a lot of people.

I recommend checking out this post 5 Things You Shouldn’t Say to Someone with an Eating Disorder. The article has some practical tips on how to love those you know are struggling. Things not to say as the title implies and several suggestions to replace those triggering comments with.

I believe firmly in loving my neighbor and doing everything in my power on a personal level to not be someones trigger. This is what made the Facebook conversation beautiful. Both women were trying to be loving, choosing to be mindful of others and learn without forcing an opinion. We don’t know the internal struggles of those around us. They may have a darkness that is threatening to drown them and I want to be a life-preserver not a rock. I think when we show love and kindness, and enter into conversations with an open heart and mind we can never go wrong.

Book Report: Life Without Ed

When we started this I intended to write more often. Really I have but none of it came together like the first post.

I have recently learned that people with Eating Disorders struggle with the concept of self. So please, bear with me for just a moment while I introduce myself. I apologize if it comes off arrogant or inconsiderate given the over arching topic of this blog. I promise that I will tie it back into the topic at hand and also the big picture 🙂

I am happy, optimistic, and hopeful. I’ve had some great mentors and role models in my life. I consider myself successful, I have a BS in Biomedical Engineering and work as a Quality Engineer for a Medical Device Manufacturer. I have two children and a wonderful wife. We love being together and going on adventures to the beach, the mountains, or even just to the park. I’ve never struggled with my personal identity. Im learning though that this is not the case for everyone. Especially for someone who struggles with an eating disorder.

Bree introduced me to a book she’s read “Life Without Ed“(I’ve just started reading) but I would like to share the concept with you, and as I read the book I would like to share what I/we learn. The book is written by Jenni Schaefer. In the beginning she describes an abusive relationship with Ed. She continues to describe the problems and effects of this horrible relationship, and then we realize that Ed is actually E.D. for Eating Disorder. Its the theory in the book that when someone struggling with an Eating Disorder can learn to detach the illness from themselves into Ed, they can begin the road to recovery. In order to change your relationship with Ed you have to learn to stand back and separate yourself  from him. They can let go easier when they can find an identity completely separate from their Eating Disorder.

I’m learning from the book, and our own experience, that people with Eating Disorders struggle with the concept of self to the point that it’s hard to distinguish themselves from Ed. They struggle to determine  their own thoughts verses Eating Disorder thoughts. My wife had highlighted this in the book:

“I always knew what Ed thought but had to really search to find out what was going on in Jenni’s mind. Oddly, I realized that I knew Ed very well but frequently felt as if I had never even met Jenni.” Jenni Schaefer “Life Without Ed, Tenth Anniversary Edition.” McGraw-Hill Education, 2014. iBooks.

Often people ask general questions in order to get to know someone. Sometimes simple questions leave my wife anxious and at a loss for an answer. For example if someone asks her what she likes to do for fun, her mind goes blank. So much of her identity deals with her issues with food and she rarely gets to reflect on her own self. She has spent so many years with Ed’s thoughts in her head all the time, she struggles to find her own voice. Im also finding that Ed is so encompassing that often people lose the desire to recover all together, because they are afraid of what will be left once the disorder is no longer in control. Ed has been calling the shots for so long, and their worth gets so tied up in how well they are at keeping Ed happy, its overwhelming and scary to think of life without him. Meanwhile I’m overwhelmed thinking of her life with him.

Bree and I have recently had a few discussions about what causes Ed to manifest. Sometimes her struggles seem small and insignificant, and other times they are completely consuming. I have begun to realize how difficult it is for someone on the outside to distinguish Eating Disordered thoughts and therefore understand our loved one appropriately. We are all emotional creatures, we feel joy and love, sadness, anger, and frustration. Ed seems to live in the negative emotions. That is his domain but in the same way an addict feels release, or relief, Ed can make you feel better in the short term but long term you feel guilt and frustration. This is Ed, this is how he works.

Throughout our entire marriage I’ve had a hard time distinguishing between Ed and Bree’s emotions. Over the last few weeks I’ve made an effort to do so. Bree recently had an experience which has helped me see the way her emotions, and therefore eating disorder behaviors swing with her circumstances. She had a friend visit recently, this friend has been an amazing support for Bree and knows her eating disorder well. This particular weekend was planned months before as a sort of reward for following some challenging meal plans and taking some hard steps in her recovery. Bree said that during this weekend she felt more “normal” in regards to food than she has in a really long time. She was able to go to lunch with her friend and just have fun instead of having the overwhelming anxiety that usually goes with her. She was free from the normal pressures of motherhood and stress which allowed her to relax and feel safe and supported. Ed was still there that weekend, he never really leaves, but he was easier to ignore. After her friend left and she had reached the end of the “goal” they were working towards, Ed got louder.

Since that weekend Bree has been very homesick, which has made battling her eating disorder extremely hard. We moved 6 months ago to California for my work and consequentially moved away from both of our families. Her family has spent the summer in Bear Lake Utah since she was a child, and they are currently there right now. Bree has always been big on traditions especially surrounding holidays. We even met on the 4th of July which just adds to the memories and emotions. Homesickness is a normal emotion and it is Bree not Ed. However it makes the battle with Ed more difficult because its easier to use your Eating Disorder to numb unpleasant emotions than it is just to feel them and deal with them in a healthy way.

As I read “Life without Ed” I’m trying to learn how to assist her in her battle, but the part I’m struggling with the most is telling the difference between Ed and normal emotions. Sometimes it obvious, and sometimes it’s not.

I’m happy to be on the road with her as she finds herself. As she separates from Ed we’ve drawn closer. I can tell when she’s losing the daily battle because we aren’t as close. Likewise I can tell when she’s winning. I don’t know how to encourage winning using positive feedback. I do intend to find out!

 

My Beautiful Wanderer

I choose to fight with her and sometimes I don’t know how. So by trial and error (many times lots of errors). We are climbing this mountain together and now we’ve decided to document the journey, our wanderings.

Wanderers:
“They are a refreshing depart from the average Joe. They view life in another way, a way that enhances experiences and justifies randomness. They find beauty in the ugly and challenge traditional norms. They protest the typical and the rigid and demand a life that’s less stoic and more magic.
They dream of books that haven’t been written, cities yet to be discovered, and lives yet to be lived. They see the beauty in the unknown and the trivial. They find meaning in the mundane tasks of everyday life and inspire others to seek adventure and originality. They are the leaders of the pack, the revolutionaries and the inspiration for the rest of us.”

“You make plans until you’re ready to leave, then leave the plans behind.
You trust your gut more than any tour guide.
You’re fascinated by maps and oceans.
You find beauty in the ugly and ugly in the beautiful.
Your family is the only reason you ever return home.”
Excerpts from: Wanderlust is Real 22 Signs You Are a Wanderer by Laurin Martin

We all know the jokes about how men don’t understand women, especially husbands and wives. But there are those of us with additional unique circumstances that make understanding a necessity AND particularly difficult.

We all want and need love and affection in our own way, but how do we show that to someone who has difficulty believing it? I’m not talking about low self-esteem, that would be akin to calling someone with depression “sad”. I’m talking about Eating Disorders and how they are a true mental illness. Often those suffering from these conditions are all around us and we never know. My wife has struggled with eating disorders at various degrees since 7th grade (17 years now). We met when we were seniors in high school and were friends but didn’t date until 2 years after high school. I’ve known her for a long time, and never knew how deeply she was struggling. In many ways I still don’t, but I am trying. I didn’t know she had an eating disorder until our first year of marriage. Only recently, the last two years or so, have I been learning of the long and lasting impact of this disease.

About a year and half ago my wife reached a pivot point when her behaviors began showing physical symptoms. Her doctor drew labs and the abnormal results showed that her body was in real distress. Even this didn’t “scare” her enough to seek professional help (again). With the help of sincere and caring friends she realized that it was time to get serious about making changes that would help her. She had seen therapists in the past, but this time sought treatment from a therapist, a dietitian, and a recovery center. The professional help she received helped her in ways I never imagined. There were times at this point that I was selfish and self-conscious because I felt that she could get better if I just loved her enough or if she tried harder. I didn’t know that she was trying, but lacked the tools and support to overcome certain hurdles. I thought that we could do it on our own, but obviously I didn’t know what I didn’t know. At times I am still ignorant to her pain and/or don’t know how best to help. I will be forever grateful to the professionals who have been, and still are, helping her and the friends who got my beautiful wanderer started down that path.

So, I want to share my experiences of loving someone who is fighting this battle. I choose to fight with her and sometimes I don’t know how. So by trial and error (many times lots of errors), we are climbing this mountain together. Now we’ve decided to document the journey, our wanderings. Unfortunately, we are still near the beginning of the journey to recovery. The road is long and rocky and isn’t always marked. There will be highs, lows, and in-betweens. I’ll try to share it all. We’ll try new things as we learn about them and share old experiences that worked and that didn’t.

Maybe I can help someone who is trying to help and support someone they love as they fight their battle. We all give and receive love in different ways. Hopefully with some extra understanding we can love and support them well. If nothing else, I know that this will help me and my beautiful wanderer. I certainly hope we can help our families, friends, and everyone struggling in their journeys.

Quick note: This is written from the perspective of a husband. This is not indented to diminish the experiences of other relationships in our lives. Additional discussions can and should be had with relation to Brothers, Sisters, Fathers, Mothers, Cousins, Aunts, Uncles, Friends, etc. This is merely a starting point. This is not intended to ever be a comparison of who suffers more because the whole intent is to better understand how to love those close to us in a way that is best for them.