aftermath

Outside In – ED with Angie

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kayla-collage

For anyone that has ever watched anyone die of any type of a disease, you know how absolutely horrific it can be. To know that something is stronger then them, and even with significant help of modern medicine, they’re unable to fight it off or overcome it. To watch someone try and fight so hard  for something, that in the end can takes their life, is beyond heartbreaking. To know that no matter how hard you try, or the resources you put in front of them, it’s nothing compared to what has overtaken them. A feeling of helplessness overtakes every part of you as watch the disease win.

It is through Mallory and Kayla’s stories that we are given the opportunity to learn from those who have walked this lonely path and bring forth awareness to our own words and actions regarding such matters. Because even though it may be possible that your child won’t directly deal with these diseases, there’s a good possibility that one of their friends may. After all, 1 out of 2 girls between the ages of 11 and 13 consider themselves overweight. By you being educated on these topics, you can have simple conversations with your kids, spouse, students, grandchildren, nieces and nephews – which in turns opens the door for conversation about a friend they may know that is struggling. This conversation plants a new seed that trickles down, making others around you more aware of what they’re saying regarding body image, while also being a support for their peers. You are planting the seed of knowledge, awareness and hope – which is something we need more of in this world. This isn’t something to be feared – for fear only closes the door of safety, leaving adults and children alike to feel even more isolated and alone.

When we choose to break down the barriers of these conversations, we open up room for something bigger, an opportunity to offer support and acceptance to others. I hope you are able to take from all of these entries, a new respect for those who have endured this disease themselves, as well as those who have stood on the other side – forced to watch those they love be overtaken by something, that while they thought they could control, only in turn, began to control them. Here are their stories.

My name is Angie Murphy and I would like to share with you our story of how an eating disorder turned our lives upside down. Anorexia Nervosa by definition is an emotional disorder characterized by an obsessive desire to lose weight by refusing to eat. This crippling disease took the life of our oldest child, Kayla, on July 13, 2013, 18 days before her 23rd birthday. Kayla was everything we could’ve asked for, she slept thru the first night home from the hospital, potty trained at 21 months, and learned to talk at a young age. As Kayla grew up she always appeared confident. She tried basketball, played in band and was even named Miss Kellogg. In doing all these things Kayla began to strive for perfection, which in time, we learned that perfectionism is or can be a starting point of an eating disorder. I remember her doing home work in 9th grade, she would be up all night re-writing things to make sure it was perfect. This perfectionism started to play a roll in her health, she would be up very late every night, not getting enough sleep, not eating properly, and always stressed out. We as parents, nor her teacher understood what was going on. We just thought she was concerned about getting good grades for college and was working way too hard to obtain them.

It was right before Kayla started 10th grade, that she made a comment about wanting to starting eating healthier. This wasn’t something that seemed alarming because we were always on the run and had a tendency to not always eat healthy. By January Kayla had lost a lot of weight, again we attributed it to the stress and anxiety from all her home work. My husband, Marty, said she needed to see a doctor to figure out what was going on. It was at this time the doctor diagnosed Kayla with an eating disorder and that some of her organs were in the beginning stages of organ failure. Our Doctor then referred us to Park Nicollet for admission to treatment. Kayla was so good about cooperating, but too far under the control of the eating disorder that she didn’t really understand how deadly this disease could be. But then again, none of us really did.

As we were going thru this whirl wind of facing the reality that our daughter has an eating disorder, we were so confused. My sister-in-law, Jean, also had an eating disorder (anorexia nervosa and bulimia), being that we didn’t live near her, we were never educated on the mental illness. Like so many others, we didn’t understand why she just couldn’t eat.  Kayla and our son seen how the eating disorder would cause someone to act in such a self destructive manner. But because we were not educated on the mental illness none of us understood why it couldn’t be fixed. We didn’t understand the signs that had built up to  the point of where Jean was at. This really goes to show you how naive we were to this mental illness. Eating disorders were something people didn’t talk about. That’s why it is so important to talk about them – to stop the stigma and to educate everyone on the early signs.

When Kayla was admitted to Park Nicollet in the Twin Cities we were so scared. She was there for several weeks, but bound and determined to beat it! After inpatient and weeks of driving daily 180 miles round trip to the Twin Cities so she could do outpatient treatment, she had almost restored her weight and learned coping skills on how to fight off what is referred too as the eating disorders “voices”.

Between 10 and 12th grade Kayla worked with several psychologists, some helpful more helpful then others, but during this period home life was horrible. Between the four of us, I felt like I had to always be there to make everyone’s life better. My husband and son wanted to help, but that usually ended up in arguments. Being so naïve to the disease, we really didn’t know how best to help Kayla at home. Eating disorders are so difficult. Sometimes when you try to encourage them, you are actually feeding the disorder. The tension at home was an everyday occurrence. We are a very close family but there were days I didn’t know if we could continue to live together. Our son didn’t really say a lot, he watched, but I know it was very painful to see his sister go through this. Fighting this disease takes everything out of them and you. 

Kayla was in and out of treatment several times over the four years she was in college. The most frustrating thing was when she turned 18 and legally became an adult. The doctors no longer had to tell us anything and Kayla could discharge herself from treatment when  she wanted. She wanted to get better so bad but the voices were so strong that it was hard for her to always make decisions that were most beneficial for her overall health and well being.

There are only a few treatment centers in Minnesota and Wisconsin that work specifically with eating disorders. The problem at that time, was they were so inconsistent on treatment methods. Many would get the patient to a stable point and then release them to go home. There wasn’t much guidance on helping the patient and family find a qualified psychologist or psychiatrist. They didn’t teach you how to go grocery shopping or how to really cope outside the treatment center. There wasn’t family education centers or meetings like they have now, that help you better understand the disease, or support groups to speak to other families that are going through the same thing, for additional support.

I think my husband was more realistic about Kayla’s passing, he never said it, but always worried about losing her. I was always a little more optimistic. I spoke with Kayla everyday and she was always trying to fight the voices, reminding her to stay strong. We would search for new doctors to help in anyway possible. Because the disease was so strong on top of a genetic link, I didn’t think Kayla would ever really have a full recovery, but I never imaged it would take her at age 22.

We will never have the answers to understand why this happened. After Kayla passed we were amazed by how many people came forward and said if it wasn’t for Kayla and her story they wouldn’t be here today. Kayla was such a caring and giving person. She touched so many lives, and that is our inspiration. Through this whole journey she/we were never ashamed of what we were going through, so we will continue to tell her story and continue to reach out to help others that are also dealing with eating disorders. We will continue to help educate where we can, continue to help raise money for the National Eating Disorders Association and The Emily Program Foundation in the Twin Cities. Kayla lived by many sayings, but two of my favorites were – “be the best you can be today because tomorrow is not promised to any of us” and “we can stand still and watch, or we can stand strong and fight”.

Do you feel there are other driving factors that reinforce eating disorders aside from genetics?

Yes! Eating disorders aren’t the average dinner table conversation. Which is why it is so important to talk about them – to stop the stigma and to educate everyone on the early signs. Eating disorders can show up for a variety of reasons, they aren’t just learned behaviors, it can be genetic, or how they are “wired”. I also believe society plays a big role in these types of diseases. There is a lot of pressure to be beautiful, to be thin, to be smart, and to be successful. This is a lot of pressure for our children at any age and I feel these are also triggers that start the process. Anxiety, depression, OCD and/or feeling as if they can’t measure up or aren’t good enough, can be some of the beginning signs of eating disorders or the onset of mental illness. As they grow and these issues and thought process strengthen, they start to control their life. We start to look for ways to find control in our lives and as a result, our body chemicals used for coping – diminish. This makes it the perfect time for an eating disorder to develop. What starts as having control over something, eventually begins to control you.

This isn’t just something that effects girls either, I do feel young boys are taught that they should have that perfect “10” for a girlfriend. This leads to a lot of bullying to those that don’t fit the bill or measure up to the standards that our society, communities and peers place. It is both genders that have this perception of being “perfect” in all realms. There are continually more boys/men that are being treated for eating disorders as well. We see this when we look at the pressure sports puts on our athletes. Telling them they need to be lighter to wrestle or leaner to run faster. It’s another aspect of their life they feel pressure from and one they may feel they have more control over. This plants a seed that weight is the driving force behind their performance. We, as a society, put attention in places where it’s least effective and needed, planting seeds that grow into something damaging. Which begins building forests of judgement and stigma around important and necessary issues such as these.This may not be something that affects everyone, but with millions suffering from eating disorders it is definitely something to be concerned and talked about.

Have you noticed an increase in education around Eating Disorders since Kayla was in treatment?

Yes, it’s getting there. They are now working on requiring teachers to be more educated on the signs that may lead to early detection of an eating disorder. Early high school age is a common time for eating disorders to develop but there is no age limit. Eating disorders have been diagnosed in children as young as five, but people such as Jean, who passed away from Anorexia Nervosa wasn’t diagnosed until she was in her late 20’s. Again, it starts with the conversation around it, just being more aware of it, asking more questions, and being advocates for each other – within the homes and the schools. We are gaining ground, slowly but surely.

*If you or anyone you know may struggle with a possible eating disorder, please know there is resources and help! Please contact any of the following

NEDA (National Eating Disorders Association) https://www.nationaleatingdisorders.org/find-help-support

The Emily Program at https://www.emilyprogram.com/locations/minnesota

Foundations such as these are vital in our communities to help others struggling with Eating Disorders. Just as we help fund many other research facilities, these programs are equally important and often don’t the attention they deserve, due to lack of awareness. Please consider donating to The Emily Program Foundation at https://app.etapestry.com/onlineforms/TheEmilyProgramFoundation/donate.html

**Please share this important story and topic on social media, for you never know who could benefit!**

Santa Monica

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Santa Monica Blog entry Nov 16.jpg

“Her mind’s made up
The girl is gone
And now I’m forced to see
I think I’m on my way
Oh, it hurts to live today
Oh and she says “Don’t you wish you were dead like me?”

And I remember the day when you left for Santa Monica
You left me to remain with all your excuses for everything
And I remember the time when you left for Santa Monica
And I remember the day you told me it’s over”

This was the last song I listened too exactly 9 years to the day with you. Although those lyrics mean something different since then, the feeling that arises when hearing them is still there. I had just put Gabby – 2 1/2 and sick at the time – to bed, waiting for Nathan to get home, you and I were chatting about wedding stuff. I had mentioned perhaps  meeting with Sarah to do wedding invites, I knew you wanted to do them, but she’s great at this stuff and thought maybe you could learn some things from her?! I remember feeling half guilty, half defensive by the look on your face that said “of course I wouldn’t do it good enough or the way you wanted”. It was that look, followed by a weak “sure”. I remember talking about all of these wedding things as you half ignored me, never looking at me – always facing the computer. I often wonder how you didn’t turn around and tell me to shut the fuck up – you didn’t care – because you weren’t going to there. I often wonder how you didn’t say many things to me – instead, always playing the part, keeping your mouth shut, trying to pretend to be happy for me – even though I knew you were pissed about the whole thing. Once I realized you were less then impressed with this choice of topic I said “oh Jos – you gotta listen to this song – you’re gonna love it – Santa Monica by Theory of a Deadman! I asked you what you thought and got a monotone “yeah – I like it.”

I’ve replayed in my head a million times us standing outside smoking – while freezing our asses off – we got laughing about I don’t  even know what. I vividly remember thinking – but never actually saying “you look so good, you’ve lost weight – you seem happy Jos!” Maybe I just wanted to enjoy that contagious laugh a little longer, so I didn’t say it – just like you didn’t say anything to me, so we carried on. When we came back in the house I told you I was sorry, you could finish what you needed too, but I needed to go to bed. I needed sleep – pffff – fuck – let’s be real – I always needed sleep! You acted bummed, with a brief hesitation – I took note of it, but was defensive and proceeded to bed. As I laid there – I remember feeling bad, but more so as if something seemed off – but too tired to bother inquiring. Instead, I heard you shut down the computer and walk across the kitchen floor for what would be the last time. I heard the door close and I fell asleep. And that was it. That was the last time I would see your face, the last time I would hear your laugh, the last time I would smoke a Marlboro with you, the last time I would have a discussion with you – it was the last of so many things that would taint me for so long.

For months and months afterwards, I would talk to you on my way into work as if you were in the passenger seat beside me. I would try and alter the reality of it – as crazy as that sounds – I just always felt like I needed those one-way conversations – that were far from conversations because I couldn’t quit crying long enough to actually finish a sentence. To this day whenever I feel you, I feel you on my right side – steady, solid, always quiet and always on my right.

At some point in all of our lives we have a massive shifting point, it shows up in many different ways, but it shakes us to the core. For those that don’t know what this feels like, you will in time, for it’s inevitable in the human experience. It isn’t a week long ordeal either – it’s a forever long ordeal. For as much as this blog has done for me, in regards to healing at a much more rapid rate on many levels – the replay of that night – the feelings that arise with that song – the longing to hear that laugh or see that smile will forever be imprinted when this week arises – year after year – despite the time in between.

How can something feel like yesterday and eternity all at once? There are times I feel as though I’ve lost the details as time has passed. There are parts of me that are thankful for that, for it doesn’t consume me like before – proving I’ve been able to let go and move forward, but there are also days – like today – when I wish I could remember every detail of your face, of your words, of your every breath. Here’s to 9 years – 9 down – plenty to go – but still looking forward to the day I see that face again.

The Aftermath

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blog headstone

In my head, the aftermath looked like a scene from a natural disaster. The people and place gets rocked by the chaos of the disaster, just to be left standing in the middle of what feels like a chaotic wilderness of nothing.

There are few things from that day and the days to follow that I can’t remember verbatim. From the time I got the email as I was shutting down my computer at work asking ‘have you heard from Jos today?’ To the phone calls made within that half hour waiting for my bus to go home, to me knowing that the next call coming through was going to bad. I knew it before I knew it, shit, I had already played it out in my head, I was getting off the bus to meet my mom at the hospital, because I assumed she was going to call back saying there was a message on the answering machine that she had been in an accident. The bus was pulling out as she called back and it’s as if the conversation played out in my head minutes prior, except she called frantic that she wasn’t breathing. I ran off the bus, planning to meet them, just to find out it wasn’t needed.

I was the last one to get there that night by the time I got a ride back. When I got there all of my family and then some were there, including her, as they hadn’t come to get her yet. I remember feeling a sigh of relief when my mom said she didn’t want me to go in because she didn’t want me to see her like that. And then there was the guilt the next day for not seeing her, for not laying with her, for not getting in more kisses and hugs when I had the chance. For being selfish, like I always was, for relying on someone to tell me what to do, for being afraid of what I’d see, afraid of it being real.

My dad was in Montana on his first mule hunting trip so we had to wait until he could get home. I can’t imagine what that day must’ve felt like for him, feeling a million miles away, unable to get a flight out sooner, walking around aimlessly feeling even more hopeless then we did actually being there, surrounded by everyone. I remember walking to the car to meet with the funeral home and saying to my fiance, “Is this really happening? We’re going to make funeral arrangements? Is this our life, is this for real?” And him responding, “yes, I’m so sorry”.

The funeral was on a Sunday, it was November – colder then hell, raining and sleeting. The family had visitation prior and I just wanted to hog her! There just wasn’t enough time to fit in every single I love you, I’m sorry, kiss and hug for all the times I chose not too. We were told due to the amount of people lined up, we needed to begin earlier and I remember being pissed. Pissed because I didn’t care who was standing in the freezing rain, this was all we had left with her, tomorrow she would gone forever, we needed this time – we deserved this time! The next 6+ hours consisted of hugging and talking to about 1100 people, one of the largest wakes they had hosted to date. It was overwhelming to see the amount of people that came through, from old to young alike. But I couldn’t help but think, do you see this Josie?! Did you have any idea how many people your choice has affected? I wish you knew, why did it have to be this way in order for you to see it? Those hours consisted of going through the motions, being introduced to people, hugging, and saying thank you for coming, but oddly enough, not all that much crying. As I would look out beyond the people’s shoulders that were standing in front of me, seeing no end in site to the line, there would be certain random faces that would just trigger a melt down. But all in all, as we stood on the other side, we held our shit together pretty well!

The funeral was worse for me, once again we weren’t able to get additional time with her like we’d planned due to the number of people packed in the church. And once again, I was pissed because I didn’t give a shit – this was it – this was the last time of any physical contact with her, even if it was in this form. As I bent over to kiss her and hold her hand and try and squeeze in the last of apologies and I love yous, I managed to lose a contact through the tears. This was less then ideal being that I was doing the eulogy! The closing of the casket was about enough to make all of us hit our knees as we knew this was it. The remainder of the service I concentrated on trying to hold it together so I could make it through the eulogy, I knew if one tear fell while I was up there, it’d be game over and I wouldn’t be able to finish it. I did – I delivered and I felt I owed her that. As we exited they played Eagles Wings, one of my favorite hymns and that’s when I lost it, following the casket out to the hearse, but it was worse watching them lower her in the ground. I remember being told the services are more for everyone else to come and mourn the loss and pay respects to the family, then it is for the family. It isn’t until after that, do you get a glimpse of what our new reality is about to look like. We learned how much truth was behind that statement.

Fortunate is an understatement of what were when it came to family, friends and community support. I mean, besides the fact that the wake alone consisted of 1100 people, the amount of people that remembered long after that was still so impressive. People were stopping by a few months after, always calling and asking what they do or how they could help – the response was so humbling in so many ways. Looking back, it’s overwhelming to think how fortunate we were and are! The simple gestures of hand written cards with poems and nice letters, not even just then, but for birthdays and anniversaries to follow – that people remembered! Things that are so hard to appreciate at the time, but that speak volumes in so many ways, that we often forget as the time passes. Not many can say that and I feel fortunate that we can.

But despite the tremendous support surrounding us, there was still this calm after the storm – when the world around you starts going back to their hustle and bustle and you’re forced to have to sit with it and really swallow and digest it. It was in the quiet that it really started to settle, the pain began settling both physically and mentally and the sobering truth spoke volumes. It was learning how to recalibrate our days of going back to work and into society with this….heaviness. To know eyes are on you, not knowing what to say, and if they did say anything, it didn’t matter anyways, because nothing took away the pain. Nothing even put a dent in it. It was hard to appreciate those that expressed their condolences because I was so numb, that and it was the fear of breaking down. It was such a toss up at first, one day it’s as if I was offended if someone didn’t say anything and then other days I’d pray they wouldn’t because I wouldn’t be able to contain the tears! To attempt to focus on the task sitting in front of me was next to impossible because the only thing I could think about was her. Where I went wrong, how I didn’t see it, how the rest of the world gets to pick up and move forward and how I have no clue what or where in the hell to go from here. Who am I? What is my life? Is this real or am I still in a nightmare? When will I wake up? There were no amount of words or actions that were going to change the outcome or bring me any type of peace. It was nice and it was humbling, don’t get me wrong, but at the time, I couldn’t appreciate it.

The destruction that came afterwards, the kind that settled in with the stillness and quiet – this new ‘norm’ – this new ‘reality’ – this new what the fuuuuuuuck?! It’s as if you’re looking at your life through an outside lens saying “what’s happening, where are you, did the plot in the story change – get out of this!” ha And to think, on so many levels – it was only just the beginning.

Continue reading Missing Piece

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