disease

Outside In – ED with Angie

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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!**

Inside Out – E.D. with Mallory

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 “Why can’t you just eat?” “Why don’t you quit eating?” “Why would anyone want to vomit after every meal? Gross!” “Why can’t you control the thoughts in your head?” “Why can’t you just be happy?” “Why can’t you just calm down?” “Did you see how much weight she’s gained – Ew!” “Put some meat on those bones” “If you were hotter – I’d date you” “God I’m so huge” “I hate my body” “I wish I looked like her” “Why did I have to get my mom’s hips?” “Is it so much to ask to be Beyonce?”

Welcome to the 21st century – where a majority of today’s focus rests on physical appearance. Too fat, too skinny, thighs are too big, ass could be bigger, take some from the gut, put it in the breasts, oh and the extra could be nicely added to the lips, I mean we hate to waste any, God only knows there’s plenty to spare! Welcome to the thought process of a majority of today’s population! If we don’t say them, I can guarantee we think them far more then anyone cares to admit! Whether about others or ourselves, the fact that this much thought goes into one aspect of the millions of things that make up a person – is a problem.

These are the ugly little seeds that are constantly being planted in not only our heads, but our kids’ heads on a daily basis. We stand in a check out line at the grocery store to thumb through the latest magazine with the latest named sexy actress, they watch commercials with half naked men and women, they hear adults talk about how much weight they’ve gained or how they shouldn’t be eating anymore, we hear men laugh and joke about sexist remarks or the ass on the waitress, or the lyrics to songs that reinforce what a “10” should look like.  Adults and children alike are constantly being reminded of the importance we’ve placed on body image – what seems harmless is often more harmful then we believe. We are setting precedence of what is the “norm”, leaving people to think that the only way to ‘fit in’, to be accepted or to be worthy of love – is to mirror these size 2 women, or ripped men. The fact is, that constant conversation, in any manner, around body image, good or bad – is the overall problem. You add these subconscious thoughts to a child who already struggles with things such as depression, anxiety, bi-polar, OCD or just plain fitting in, and you’ve set them up for a psychological disaster that could easily put them into place where control is no longer theirs.

This is a 2 part series on eating disorders, this entry showing what the inside looking out looked like from Mallory’s viewpoint. Angie will tell us what it was like from the outside looking in, watching her daughter endure, and eventually losing her life from Anorexia. This is another issue few care to familiarize themselves with because we often feel it’s nothing we need to worry about with our children. However, I think you, like I was, may be more surprised then you think about the stigma, signs and symptoms that can be associated with these diseases.

My name is Mallory Schad and I am in recovery from an eating disorder. My hope in sharing my story is that I can help shatter the stigma wrapped around mental illnesses. Yes, eating disorders are a mental illness, it’s not something you choose. I believe I was born with this disease. I believe I will always battle this disease, but most of all, I believe I can conquer this disease. Here is my story.

What was your “official diagnosis” and what does that mean via text book – more importantly – what did that mean to you? Has this been something that has always plagued you?

For as long as I can remember, I have struggled with body image. I was a “tomboy” growing up. I wasn’t your typical “girly girl” – I liked hanging with the boys, and dressing like one. My mom was supportive of my taste and always took me shopping in the boy’s department. She never tried to change me, nor told me I needed to look a certain way. So, for the most part, I dressed like a boy. That’s what I liked. Often times in public, I was mistaken as a boy. I felt ashamed of what I looked like, due to others’ reactions and perceptions of me. It was confusing. I was just being me. What is wrong with being me?

It was 7th grade where I finally gained some freedom from outside remarks regarding my gender. I was becoming more interested in make-up and grew my hair long. Funny how people stop ridiculing when you seem to appear “normal” or fit a mold that makes them comfortable. Aside from the harassment I endured from outsiders concerning my gender, there was another factor that I believe played a role in my developing disorder. As a 7th grader, I was a young athlete participating in sports at a higher level. Because of this, I became close with peers and fellow athletes that were older then me on a daily basis. I looked up to them and I felt like they had taken this shy little 7th grader under their wings. I was thankful for them. Exposure goes with the territory of hanging with students older than you. The topics I discussed with my friends in school, were very different from those that I overheard after school during practice. Topics discussed were natural for young girls their age, but for a 12 year old, it was very eye-opening. These girls were going through puberty and experiencing their bodies changing and developing. Naturally, I then became aware of my own body. I remember hearing others talk negatively about the size of their bodies. Comments were made about “being fat” or “having big legs”, etc. I remember a teammate crying at Cross Country practice, telling the coach she “had more weight to carry”, therefore had a harder time keeping up. I knew the weight had nothing to do with her performance. She was not overweight.

I stepped on the scale as a 12 year old and glared at the number I saw staring back at me – 89 pounds. You can’t let yourself get above 89 pounds. I remember feeling scared for having that thought go through my mind. I didn’t know where it came from, so I brushed it aside. I started becoming more aware of my changing body. I was gaining muscle as an athlete and noticed my thighs getting bigger. They touched when I walked. How come the other girl’s thighs don’t touch when they walk? How come my thighs are so HUGE??? “I HATE my thighs”. Fast forward to 9th grade. It was the beginning of Cross Country season. Apparently, I had grown over the summer people felt it was necessary to comment on other people’s bodies, as if it was worthy of discussion. I’ll never forget having 3 people in one day comment on my weight gain. “You look bigger out there running – Strong! Other people had noticed it too. That one stuck with me. I didn’t hear the “strong”, I heard the “bigger”. I went home after practice and paced in the garage. I was filled with rage. “Why was my body anybody else’s concern? I was pissed. I only wished I stayed pissed and didn’t turn that rage inward on myself.

I remained aware of my body through high school. As I entered 11th grade I started developing some disorder behaviors. I purged for the first time when I was 15. It wasn’t then that I fully engaged in this disordered behavior, but I definitely played around with it. During college, I experienced the inevitable “freshman 15”. I was 23 when I started binging and purging. This cycle went on for about 5 months, I’d lose weight and people would notice. They commented. I continued in my cycle of destruction. I saw a psychiatrist because I knew my behavior was unhealthy, but inevitably stopped going. I didn’t think I needed the help. I somewhat snapped out of that cycle of destruction for the time being, only for it to return.

When at your lowest, what did your mental, physical and emotional state consist of? If you could give us a briefing on what went on in your world on an average day, as well inside your head – what would that look like for you.

At the age of 24 I moved to Bemidji, MN for a change of pace. This became the best and worst time of my life simultaneously. In the fall of 2012 I decided I needed to step up my game to get in shape for my cousin’s upcoming destination wedding that February. What started as going to the gym, quickly became being obsessed with the numbers on the exercise machines. Every day I worked out – having to run longer, while increasing resistance and burning more calories. Something HAD to be more intense than the day before.

I was diagnosed with Orthorexia. For those of you wondering, the ‘text book’ version of Orthorexia is an “unhealthy obsession” with otherwise healthy eating, a term which literally means “fixation on righteous eating.”Along with this came the same mindset around food. Everything had to be strictly “the best”. When the various work out regimens weren’t enough, I decided I wanted to get back into running. I ran every day. It was my outlet, or so I thought. Every time I ran, I had to beat the pace from the day before, always having to push myself harder. This sort of mind set is what sent me into a downward spiral. It was “all or nothing” for me. There was no grey. Black and white thinking was my new norm. 

At my lowest weight, I was not living a life for myself anymore. I was living for the disease. There was zero space in my mind for anything other than disordered thoughts. I was consumed. My dietary intake became very rigid. I developed numerous food rules which included constant restrictions, followed by punishing behaviors. Anything else I ate outside of my obsessively strict and rigid guidelines, was done because I was in the company of others, because I felt I needed to hide my odd eating habits. This was my “FIT IS THE NEW SKINNY”. This was my “I’M GETTING HEALTHY” bullshit the media feeds you to believe. But nope, this was something else. This was the diet industries damaging message it sends to the public. Eat this, not that. Do this, to look like this. Looking like this, will make you happy. Wanting to look a certain way, became an unattainable nightmare.

 I was also diagnosed with body dysmorphia. Perhaps for some people they can work out and maintain a rigid diet and truly be healthy and happy. For someone fighting a mental illness, it became insanity.

I became so obsessed with counting calories that I started purging to restrict my caloric intake. I would eat small portions of food, believing them to be large, and then purge afterward. Often times after eating, I would feel such intense guilt and anxiety. Purging became my escape from the anxiety. Sometimes during the day I would go in a cycle of eating and purging for hours. I slept a lot to keep my mind from thinking about food. I wanted to eat all this delicious food that everyone else was having around me, but I couldn’t allow it. It was simply off limits. 

I also developed behaviors called “body checking”. I would measure my wrists and certain parts of my body. I would put certain articles of clothing on to make sure they were still lose, or that they were becoming more lose. I would look for protruding bones in my body, running my hands over them obsessively to make sure I could still feel them. I would take “progress pictures” and compare what I looked like previously to past pictures. I was so fixated on gaining muscle. I couldn’t pass a mirror without looking in it. But the thing was, my mind was playing tricks on me. Of course those bones aren’t protruding anymore and the pants are growing tighter and you look huge in those pictures.” Back to the gym, and you better go to bed hungry”.  The anxiety around that was paralyzing. This cycle was on repeat and this was what day in and day out consisted of for 2 years.

In the end, I did lose the weight. I did gain muscle. Physically, on the outside, I looked “fit”. I received compliments regarding my appearance, which only fueled the fire inside to keep the cycle going. What I wasn’t noticing at the time, was that it was never enough. I could lift a certain amount of weight, run a certain distance at a certain pace, but nothing was ever good enough. There was always room for improvement. This was my high, but also my imprisonment, my punishment. I often times got down on myself for not being a better student in college and partying too much in my early 20’s. I felt like I was turning my life around by achieving this “healthy lifestyle” and that I was making better choices for myself.  I wasn’t healthy though. I was exhausted all the time. My memory was shot. I would blackout often, felt weak and suffered with chest pain due to tears in my esophagus from purging.

Mentally, I felt at complete war with myself. I was not living my life at all. I was living for the disease. I was on a high from “controlling” my dietary intake and working out, but at the same time was severely depressed and didn’t know it.  

What were the general feelings that arose around food in general?

Immense fear. My underlying anxiety just overflowed to food, instead of having anxiety without consumption, I had it with the consumption. If I was consuming something I deemed “safe” I felt empowered. If I was out to eat, or eating something with family or friends that was not my choosing, I felt immense fear and anxiety. I wondered how it was prepared, and what ingredients were involved, which led to panic. I was not shy about sneaking off to purge the food either.

There was also sadness and guilt. I knew what I was doing was unhealthy, but I couldn’t stop because it made me feel so good. When I was eating inside my comfort zone it felt like a high. Everything was a judgement on myself, I obtained self-satisfaction by controlling my urges to eat what was doomed to be “bad for me”.

Grocery shopping took hours. Food was strange for me. Think of it as a drug that you only need a bit of. How do you start or stop when you feel so out of touch with the reality of it? When it controls you?  How do you develop a healthy relationship with it? Food is sort of like drugs in a sense, but also very different – because you need it to survive.

At what point were you aware this had become something beyond your control that needed professional help?

After being told by a doctor I was clinically malnourished, I started seeing a counselor, but she didn’t specialize in in eating disorders. In fact, noone in my area did! In all honesty I figured since I was there, I’d just get some good life counseling and tips to get myself back on track with school since it had taken the back burner to my rigid exercise routine. Besides, I never said I had an eating disorder, I just had “tendencies”.

After about a month, the counselor asked me if I’d consider inpatient. I thought she was crazy – no way! Eventually, she said she couldn’t help me, as she didn’t want to see me walk through the door again continually wasting away.  She quoted me previously saying “I’d give anything to have a healthy relationship with food” and made the analogy that – walking into a grocery store is like shopping for drugs for someone with a drug addiction. It’s insane. She told me it was time to seriously think about treatment. And I did. I called the Emily Program in the Twin Cities on a Friday and was admitted the following Monday.

                    How many times did you attempt help and was it actually helpful?                           If so, what parts did you feel were most detrimental in your journey to healing?

I attempted to seek help a few times, but was never committed. I would lie to counselors and tell them I was better. I wasn’t ready. I didn’t get help until I was completely submersed in my disease.  Eating disorders are really good at telling you that you don’t need help, or that you’re “not sick enough”. Master manipulators they are. It’s tough, because there is so much emphasis surrounding healthy eating and exercise, that it can be hard to tell when you have crossed the line into unhealthy habits.

How long have you been “free” so-to-speak from this disease and who are you since this journey as you continue to heal?

The decision to choose treatment over the comfort of the disorder was the hardest choice I’ve ever had to make. I knew my world would be flipped upside down. I knew it would be hard. I did 4 months of intensive outpatient. 4 days a week I would spend the day at the Emily Program. Re-feeding, dietary classes, group therapy, individual therapy and yoga. I’m not going to lie, the process was painful, but also very liberating learning to disconnect and free myself from it.

My mental state was at an all-time low. I struggled with suicidal ideation, major depressive disorder and anxiety. My body was in immense pain for a few months from the changes it was enduring. Week by week though, I learned about the disease and how to cope. I had no choice but to choose recovery after having my eyes opened to the dangerous lifestyle I had been living.

I’d say it was about 3 months after completing treatment that I became comfortable talking about the disease. I was still very uneasy and untrusting of my body right after treatment. It took some time to take the skills I had learned in treatment and put them to use on my own. I slowly became comfortable with the process and became more open to discussing it.

Today, I want to speak more freely and openly about the disease. I want people to be aware of it and to understand it. It’s so very misunderstood and there can be so many varying layers to it. I want people to know they are not alone, and most importantly that they are not abnormal for having the thoughts/behaviors they do. I want people to know there is help out there and that it’s possible to be freed from this deadly and agonizing disease.

Do you feel this still controls a large part of you, or something you’ve been able to slowly distance yourself from?

I have my good days, bad days, and everything in between. For the most part, my days are good, but there are days I still struggle with my current size and weight. There are times I wish I was smaller, or more fit. But then I remember what I felt like when I was those things. I wasn’t happy. I was sick. I was slowing wasting away in all aspects. Every day takes work. There isn’t a day that goes by that I don’t have to stop myself at some point and revert my thinking. It’s been 2.5 years since treatment.

I still struggle. I’m not where I used to be, but I know it’s going to take time. I’ve come a long way and I feel hopeful that it will only get better. It took a lot of work to get to where I am now.

What do you feel is the biggest driving force behind eating disorders? 

It can be very different for everyone, but often times I think it’s a fight for control mixed with societal beauty standards. But more times then not, eating disorders tend to mask other issues. I know for me, when I was in the depths of the disorder, it wasn’t beauty driven. It was about control, obsession and perfectionism. I had underlying issues that I needed to deal with and focusing on “getting healthy” felt like I was bettering myself.  I was masking.

I think the younger generations are very susceptible to developing eating disorders. There is a lot of pressure to fit in and look a certain way. I also believe that eating disorders do not discriminate. Any person at any age can fall victim to the disease.

How has this changed the course of your life? Is this a topic of conversation you feel deserves more time and light?

I’m not really sure how it’s changed the course of my life. I want to reach out to others and make myself available. My goal is to be a mentor to those struggling and to spread awareness and education. I want to help others along their path as I continue to learn, grow and heal myself.

Eating disorders take more lives than any other mental illness. That’s a staggering statistic, so yes, this disease absolutely deserves more time and light.

If you could speak to this age group- or any girls/women/men either at that turning point in their life-or already suffering, trying to hold on- what would you say?

I would tell them there is more to life than what they are desperately holding on to. That I know how terrifying it is to let go of the comfort the eating disorder provides, but that nothing compares to the freedom that treatment and recovery provide.

Help is out there. Trust in others. Trust in the process. Find a support system and reach out to people. Treatment and recovery is a real ugly bitch. It rips you wide open. You have to take a good look at yourself and question what you want for yourself in this life. I’d tell them it’s tough, but it’s so worth it. Most of all, it might not be your hardest battle in life. Choosing to fight preps you for the rest of whatever life throws at you. You learn about yourself, and you learn how to truly enjoy life.

I would tell them that we are all individuals and that we all have struggles. To look within and figure out what it is that is causing pain – really dig into it. Often times, eating disorders are masking a bigger problem.

*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!**

Outside Looking In – Jodell

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When you stand on the other side of watching someone steering their life into oncoming traffic in slow motion – painful is an understatement. Imagine watching your parent, child, best friend or spouse play russian roulette. You know at some point, the bullet will fire from one of the chambers – it’s just a matter of if they quit before it does. While you know the ultimate outcome, they grin and continue on – willing to gamble.

This is what it can feel like when you stand and watch someone unravel at the seams as they continually pull the trigger – or – pop another pill, snort another line, smoke another joint, chug another glass or fill another syringe. You can’t understand why aren’t they just fixing it, why can’t they see it, why would anyone in their right mind feed themselves poison and consume it willingly?! It’s a slow motion horror film.

Jodi and I have had countless conversations regarding this as years have passed and it’s also something that has been a hot topic within my own family. I don’t know if there is such a thing as a “right” or “wrong” answer. I don’t know if it’s possible to save another, or if continuing to enable or cutting ties is best. Or, at what point it’s enabling and what point it’s handing them the bullet and placing it in the correct chamber for them. I do know that these entries, from cancer, to addiction to eating disorders (stay tuned;) ) have brought to light the many facets of disease and the choices we make with them. Sometimes knowingly engaging in what could very well be their quickest way to death, sometimes holding out for anything and everything to avoid it. Disease can eat at us in ways we didn’t know possible, in ways we’ve never identified with before, or taken the time to consider how closely related they truly are. This entry builds off of Joshua’s – showing what the view from the outside looking in can look like. And, as always, it isn’t always as it seems.

Thank you Jodi for reminding me that “right” or “wrong” isn’t always that easy – that love looks different in many realms. Sometimes that means engaging, sometimes it means letting go – despite the pain. But it almost always means trusting – trusting that they’ll come through it when, and as they are willing or need too. Trusting that they remember that help is available when they’re truly ready. Trusting that as the stigmas vanish with time, this will open up new doorways of conversation, lessening the need for division and lack of hope and resources.

Your stories are the exact ones the world is needing to hear right now – the realness, rawness and truth behind them, in what seems like a fake, false and untruthful world right now! To hear what may have felt like failure, only to rise and overcome the darkness – these are the things we need more of going through our news feeds. Thank you for sharing your personal story! 🙂

Describe your and Josh’s relationship growing up…at what point did that relationship begin to change?

My brother was one of my best friends growing up, we are only 16 months apart. We were average country kids, always four wheeling, riding bike, hanging out under the bridge on I-90, and jumping off the house! (Yeah, we actually did that for fun, when you live in the country you have to be more creative!) Granted, we had our typical sibling fights, but most of the time we had a lot of fun! In high school we would go to the same parties and we hung out with the same group of friends. It was so much fun to have him there, I always felt like I never had to worry about things much because he was always there. He was always, in my eyes, was someone that everything came easy to him – national spelling bee champion in middle school, extremely smart, and athletic. The kind of guy that others would be jealous of! I know I was, I struggled with math in school (still do!) and it just comes so easy for him. I would study so hard and he didn’t even show up to class and he’d still pull good grades.

Looking back, everything that we did – involved partying – I guess that was just the “norm” for a small town. Once we graduated high school I moved to the Twin Cities and then to Mankato. Josh was a bit of a wanderer and always seemed to show up where ever I lived and I loved to have him there because he was always the life of the party! It did, however, start to change.

He couldn’t keep a job, began to get DUI’s and was always in trouble with the law – which, in time, meant that every time he would call or stop over, I knew that he wanted something. I would let him stay or give him money – whatever I could do; he was my brother and that’s what family is for – right? I was kicked out of an apartment because he kept coming in through the window and kicked out of the bar I worked at for fighting. It was hard to not be able to have my brother even come in while I was working, so I begged the owner to give him another chance – but that didn’t last long. He went from being the life of the party to the one who usually ruined the party. In the beginning when people would ask are you Josh’s sister I would love to say “yes”, because it usually followed with “man I love that guy, he is so funny!” followed by a crazy story about him. But, that also changed with time – it became, “Oh man I can’t believe that you are his sister – that guy is fucked up or he owes me money.” I have watched him get his head bashed into a metal step by three guys, get his face smashed into a curb, seriously countless fights – too many to even remember. He had an attitude where he honestly didn’t give a shit – fearless was an understatement.

Did you always know there was a true “problem”? At what point did you realize this was bigger than recreational and fun? What were signs that made you aware he was using?

Josh was in treatment for drinking the first time when he was about 14. I, of course didn’t think it was a problem, because even at that age, it was just the “norm”. Even when we were in our 20’s, he had been getting pretty bad and was in trouble with the law countless times, didn’t even have a licence or a job for years – I still thought this is just something that he will out grow. The drug use always seemed recreational from my stand point as well. He would say that he could quit whenever he wanted. He would smoke weed but decided he didn’t really like, which then led to cocaine, then ecstasy. I still thought it was just something that would pass – no one ever says “I want to be an addict when I get older” – so I just figured it would stop. The drinking kept getting worse and with that, so did the drugs. I knew he had a full alcohol problem when he was in his early 20’s but I also knew that he wasn’t ready to change. By this time he had been in treatment several times. We had countless family days were my mom, dad and I would go and leave thinking “this is the time it is going to work” but it never did – it just kept getting worse. There were so many times I would have to go pick him up and he had no idea where he was or how he got there and he was usually driving on a revoked license. The last time he was in treatment I thought this might be the one that sticks.

He had picked up some hitch hackers on 35 and ended up at my camper in clear lake, IA. I told him staying there wasn’t an option, but Josh was so messed up I didn’t know what to do. So, I gave him some food hoping they would eat because god knows the last time either of them had. They went to a state park a couple of miles from our campground and continued to party. I don’t know what they were taking but Josh had his usual liter of vodka almost gone, looking for more alcohol. We got into a fight and I told him to leave, but when he left – he was so messed up he thought he was taking the road but went right through the playground. There were kids playing and he was within a few feet of hitting a child that was coming down the slide. It all seemed to be happening in slow motion. I ran after him as well as many others, but he didn’t stop – he didn’t even realize that he did that. It was the worst feeling I have ever had in my life – watching him come so close to possibly killing someone, none the less a child! The next day he called and said he needed help. My dad and I took him to the Fountain Center once again, on the ride I told him about what happened and he just cried and screamed, telling me not to talk about it – he didn’t want to know! See the thing is, my brother is one of the best guys you will ever meet, with one of the biggest hearts so the thought of this possibility would have destroyed him – my whole family in fact. They said his blood alcohol level was so high he should be dead. These scenarios were countless – things like this just kept happening on repeat.

At one point, he was in an alcohol induced comma, when we got to the hospital, they advised us to prepare ourselves to say good bye to him. Miraculously, he woke up and 3 days later was out of the hospital and the first stop was the liquor store. This would not be our last trip to a hospital with him either. His heart has stopped completely three times and had OD’d on heroin twice (that I know of). To be honest I don’t know why he is still on this earth with us. I knew he had a drinking problem and his use in coke and ecstasy had increased but it hadn’t crossed my mind he could die from it…. As horrible as it may be to say, I wasn’t overly concerned with coke and x, as they are hard drugs, but it was something that a lot of other people I know did. I guess I thought he’d get bored with it, well did he ever get bored with it – that is when heroin and meth came into his life. These drugs are something that truly come out of the depths of hell and will rip anything that you love about a person right out of them. They become unrecognizable. For everything that we had been through with Josh and drinking – I found myself now saying, “I wish it was just drinking again”.

What was it like to watch him deteriorate or delve deeper in the addiction? What did his behavior consist of during this time?

It is honestly like watching someone slowly kill themselves and that is exactly what he was doing and it was even harder to know he didn’t care. We lost several close friends in high school to suicide and Josh knew the pain that brought, so he promised he would never, although I know it crossed his mind several times. This was just as bad as losing someone though because I did lose my brother. Every time the phone would ring or my mom would send a message saying ‘call me right away’ my heart would sink. It was never ending – just waiting for the news to come that he was gone. He had completely changed – my big hearted brother was no longer. He didn’t care about us; he treated his druggie friends better than he did his own family. He was always combative and would fight with my parents. I told Josh I would never forgive him if something happened to them during one of their fights. He wouldn’t listen to any of us – there was so much anger in him. You couldn’t even talk to him anymore, he cared about drugs and that was it. I had no idea if I would ever see the Josh that I loved again.

Did you want to help him more or realized you needed to distance yourself when this happened?

I had tried for years to help him. I would always be there when he called; I would give him a place to stay, money, and food whatever he needed. It affected my relationships too. There were many times I was told ‘it’s your brother or me’, or, ‘this has to stop’. How do you stop it though when you love someone and you just want to help them? How do you live with the guilt if something were to happen? I was with him for years side by side having fun, drinking and partying, so now that you have an addiction and I don’t – I’m not going to help you? I ask myself over and over why this all happened to him. Why not me? Alcohol was a big part of my life but it didn’t take me on this downward spiral. Why did it happen to him? He could’ve been anything and done anything – he is so intelligent and loving.

I have so much guilt still to this day that I should’ve done more, I should’ve stopped it, or I shouldn’t have partied with him so much. It took me a long time to start saying “no” to him but I finally did. I had to cut him from my life. I knew when he would call and I started to say no it was going to be bad and it broke my heart! He would call and ask for money or buy him vodka and he would yell and say horrible things, which led to me crying every time I got off the phone with him. I lost my brother……..he was gone.

My parents and I started to fight over this too. They would always bail him out anytime he was in jail, they’d give him money, they let him live at their house without working – it was just years of drinking and doing drugs. He had no respect for my parents or their house. I can’t even tell you how many drug deals and users that he would bring over to my parents because they wouldn’t do anything about it. They were completely enabling him and his addiction. I know why they did it. I can’t imagine having your child out on the streets not knowing if he was going to live. But I kept telling them that by letting him stay there with no concerns of shelter or food they were now killing him. I know it is really harsh to say but my brother was dying in my parent’s basement in front of their eyes and they were allowing it.

What did his mindset consist of when he was using, what emotions did that trigger in you?

His concept of reality was gone. Trying to talk to him was next to impossible. The things that a person would consider horrible were no big deal to him. He has two beautiful daughters and he thought he was being a great dad to them because he was “around”. He loves his girls more than anything but even that love couldn’t stop him from using and his mind was so warped that he thought he was giving them everything that they needed. When in all actuality, he was high all the time with them, yes, he was physically there but it wasn’t an environment for children to be raised. One of the last times I talked to him – my best friend from high school, who loves Josh like her own brother, was home . We ran into him while we were out and she was so happy to see him, even though he wasn’t the Josh that she loved. She asked him how he could live like this and he laughed and said “are you kidding me…..me – live like this!?!? I have never been happier in my life – you two are the ones who are phoney and living a horrible life!” It went on and on and he finally left because the fighting just continued. That was a moment when I felt there is no way that the Josh I knew is ever coming back. How in the world could someone who was high on heroin at the time, have no place to call his own for him or his girls, not a dime in his pocket, not have even the slightest clue where he was going to sleep for the night or ever give his kids the life they deserve – EVER say that he was happy?! His whole outlook on life was gone….he was gone.

Was it hard to see the potential in someone, and know what they could be – but unable to teach or show them their own self-worth?

I wish that Josh could have seen what everyone saw in him. Like I said, he was the one that most would have loved to be; loving, smart, funny, good looking and so caring. The thing about all of this is, is this is how we all perceived him from the outside. When in all actuality, he had extreme anxiety that started when he was very young, so this was his way of gaining self-confidence. I was with him every day, how did I not see this? From the outside, he seemed so confident, had tons of friends and millions of girls that were dying to go out with him! I wish that he would have told me when we were younger so he could’ve gotten the help that he needed so long ago.

What was it like as a spectator from the sidelines? Explain what the highs and lows looked like from the outside and the affect it had on you and your family.

It was emotionally draining not knowing where he was or if that next call was going to be the call that he was gone. I just wanted him to snap out of it and get his shit cleaned up. I don’t know how he lived like that for years and never will. I do know that it is a disease that consumes everything. It is deeper than any of us can even begin to comprehend. It takes everything that you love or care about and throws it away. To the point that your number one concern is where do I get the my next hit? It broke my heart to step away. I told my husband that my brother died, he will never come back. It is a death, a death to a relationship that should last forever. I didn’t have anyone, I felt as though I was an only child now. I would get so jealous and almost mad at my friends that had siblings that they could call just to talk, go shopping with, and have holidays together. It wasn’t fair!!

It was also hard to watch my parents. Like I said they did anything for him. But as things progressed, my Dad started to see that he had to let go too – which made things worse. Josh and him are close but have always seemed to have this underlying issue between them. I think my Dad was just so disappointed because he could see all the potential he had and instead, was throwing it away just as he had watched his own Dad do for years. Watching my Dad and Mom fight over Josh was never easy either. My Mom wouldn’t ever stand firm and the tension that brought to their marriage was almost too much. My parents love my brother more than anything – how do you turn your back on that?

If you had to compare him at his lowest to today – what are the differences? Who and what do you see when you look at him today?

There is no comparison to that person and who Josh is today. He is such a giving person and best Dad, I see how much love he has for his girls and it is almost too much it makes my heart hurt to see him love them so much. He has found faith and that is getting him through this journey. I know that it’ll always be an uphill battle but he has the support of his family and we will be with him every step of the way. He is working and realizes how rewarding that alone can be to, just to have the responsibility of a job and what comes with it. I truly can’t say enough about the man that he is today; every time I think of how far he has come I can’t help but cry. I can honestly say that I have never in my life been so proud of someone before. I talk about him all the time and I love it more than anything! Now when someone says, are you Josh’s sister, I gladly respond…….’YES I AM’!!

I don’t think of my brother as an “addict” – he is a survivor. It was a part of his life but it wont define who he is or who he chooses to become from this point forward. Josh is a brother, friend, father, son, and an all around wonderful person.

What is your take on the Judicial System &/and resources offered to those struggling with addiction?

Our society has a negative look on addicts, as though they aren’t as “worthy” as them – when in fact everyone deals with issues in their life. This just happens to be theirs, so why is the stigma that comes with this widely spread problem viewed as if it’s something that doesn’t deserve the same love and attention that we would give that of a cancer patient? I think the most frustrating part of these years – was the huge lack of long term help and resources. The traditional treatment programs do not work, for Josh anyways. We need to focus on mental and emotional health as much as staying clean. There was more then one point in my brothers life when he came to me and said ‘I am ready I need to go get help now’. For those of you that have dealt with this, know that when they say now it has to be now, because in an hour it could change! I would call millions of places and ask for help and I always got the same answer sorry we are full we have an opening in 3 months will that work!?! No it wont he needs help NOW!

As far as the Judicial system – once you are “labeled” in the courts eyes – there is no helping – they sentence you to jail or a half way house, (which by the way, are just places where you meet more connections!) Josh was first offered heroin when he was at a half way house in St. Cloud. My parents and I left there thinking okay this is it – it’s going to work and 2 weeks later he was gone. My parents got a call at 2 am from Josh, he had been living on the streets for a couple of days and had no where to go, so back they went hopes shattered – not knowing what was in store for them with the years to come!

It is so sad that we have chosen to dismiss the underlying issues that drive addiction, to think that a 30 day program is enough to dig beneath the many layers that have been created. Not only that, but following that short treatment, we put them back into the environment in which they came from – only setting them up for additional failure with even more contacts and no additional long term options.

A note from Josh’s mom, Vicki regarding the difference in who he was versus who he is today….

He has totally turned his life around now and lives it how God wants him too. He feels like he is worth something, has a job now and loves being around his family and he is the best single dad I have ever seen! Our hearts are filled with joy now that we know he is safe and taking care of himself and his family! Now, he talks about how alone he felt and scared all those years he was growing up drinking and doing drugs. He hated his life, even though he let on that he was so happy and didn’t have a care in the world, he now feels relief. He was so miserable he didn’t know what to do other than stay drunk and high, as this masked things from the surface. It seems incomparable to think of that person and the son we have back now! Today we have our son back in our lives full force and it is such a good feeling that he feels good about himself now and has found his place on earth with God. We are so thankful!

Despite where we’re at in life, we can all use additional support, visit www.crisisaverted.org for a complimentary phone call to learn more!

*If you or someone you know is in need of help, here a general site/line to start with to better direct you of resources within your area drugabuse.gov or https://www.samhsa.gov/find-help *

*If any of this resonates with you, or you know of someone it may help who is personally struggling or has family that is, please feel free to share on social media to bring forth awareness and hope, while breaking down stigma around this subject!*

Inside Looking Out – Joshua

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“My Name is Joshua Kuhlmann. I am an alcoholic. I am a meth and heroine addict, but only when accompanied by alcohol.” This is how I would’ve identified myself the last time I walked into treatment. I was 39 years old, this was approximately my 9th round of treatment, 2nd round of inpatient. This time I knew it was the last time, I felt it deep within me, I was finally bowing out of this life I became to know and rely on.

For all the thoughts and words that come to mind when we hear words such as “recovering meth or heroine addict” – vulnerable, courageous and inspirational most likely aren’t on the top of many’s list. When actually, those are the words that are deserved for anyone who has succumbed to any type of an addiction, and especially the wrath of harsh substances such as these. To not be able to see your life beyond your next sip or hit, to have your mind so overtaken by something that literally owns and destroys you, as well as every facet of your body and life, is something many more know then society cares to recognize. This is not always what it may seem from the outside looking in, it’s far deeper then that. It’s a world of it’s own that only exists to those caught in it’s darkness – it’s mental illness in another realm – masked by and numbed by a substance. To hear someone’s countless stories of being at the bottom of this barrel for years on end, only to see them a year later, an entirely different and new being – watching them rebuild their life literally one minute, hour or day at a time is quite amazing. To beat the mindset of knowing that at any minute they could go back to any of it with a simple phone call – is inspirational!

Thank you Josh, for not only sharing your story, but teaching and reminding me what the meaning of truly being one’s self looks like. To be forced to function in every single area of your life with total and complete surrender, vulnerability and sobriety is not a task many care to attempt. To be back in the work force, raising children, building and starting new relationships, a home and most importantly rebuilding yourself! Everyone “lives their life”, many never walking down the path of addiction, but few live their lives consciously, always looking to improve themselves, being open and adaptable to change and giving gratitude for the simplest of things the rest of us take for granted. And that is just a few of the great things we can learn from you and all those who have walked this with you. You have so much to be proud of and so much more to look forward too on this new and exciting, while also challenging-in-it’s-own-way journey.

Here is Josh’s story, which will be followed by another entry from his sister, Jodell, who will give us a glimpse of what it was like to stand on the other side, from the outside looking in.

At what age did it begin and were there any underlying reason? What substance did you start with?

It began when I was in elementary school, when my dad passed me a beer to take a swig. There was this feeling of acceptance I got, being “one of the guys”. It was a rush, a relief, as if I was on top of the world, all my problems washed away in that one sip. It was the social norm for my parents to host card parties and sit around and drink, especially in a small town. This was the normal setting I was exposed too, so it didn’t seem foreign to me. From that point forward it slowly, but consistently grew – it planted a seed of acceptance that I didn’t realize would snowball into something far bigger.

Let me just give you a bit of a timeline of what this life looked like. I rang in my 13th birthday smoking weed for the first time, which then led to regular use. At 14 I got what was the first of many minor consumptions. Age 16, my senior year, brought with it my first round of outpatient treatment. Although the drinking didn’t slow, I wanted to be able to participate in football, and this was mandatory in order for me to do so.

I graduated at 17, this just gave me even more time during the day to indulge in partying, with that came regular use of cocaine. I had a great job, I was making good money removing asbestos from homes. At 19 I buy a house, drinking copious amounts of vodka, while feeling daily rushes of regular cocaine use. I can average 2-3 days before crashing. A majority of this great income is spent on sipping, chugging and snorting. One of what will be four DUI’s follows shortly after, along with 3 friends committing suicide. This scares me, but I’m still feeling as if I need these outlets in order to be “social” because my anxiety is so intense. Age 20, I lose my job because I’m not able to function and make it there regularly, but not a huge deal, besides, I’m making enough money dealing. I’m feeling really good about myself, people look up to me and respect me and it fills another void. The reality of my friends deaths start to settle a little too close to home, so I move to distance myself from this, with the hope of going to college and playing football to get my life back on track. This instead turns into more hook ups and even better money selling coke! It’s funny how you say you’ll “never” until you’re standing there doing that “never”. I swore I would never shoot up, but somehow find myself doing just that. This is what my life from age 20-30 consisted of – partying day and night, selling coke, having sex with multiple women – living the high life.

Roughly at the age of 30 I OD’d (for the 1st time) off percocet and oxy, followed by a 3 day coma. I wake up pissed, wanting out, and begging my mom for money to go get another liter. I fractured my spine from having alcohol withdrawal seizures. The realization of this injury from having seizures from withdrawals, is a bit of a scare. So, I decide another round of inpatient treatment is necessary. That followed a half way house, with 60 days of sobriety, only to get kicked out of 2 more half way houses. Another overdose – this time on heroine. I end up enrolling to college, which lands me a $5000 check to live off of and supply my needs. At one point I end up in the Anoka County Courthouse bathroom drinking rubbing alcohol to keep the shakes at bay, with nowhere to go and no clue what my next move will be. This leads me back to parents again. Although I’m working, I meet who becomes my long time girlfriend, who just happens to be a bartender. This works out well considering she supplies my booze stash. She enables me even more, always paying the bills, which allows me to carry on with my lifestyle while she works, in turn I’m caring for her daughter. This works out great, I’m home more at least, out less partying, but still feeding off the toxicity that has always resided between us.

When I’m 32 I’m in the beginning stages of liver failure, noticeably jaundice, with extreme pain. This leads to a week of sobriety after being hospitalized, but corrected itself, only to have repeated itself. This is a realization that the half gallon of vodka is no longer feasible, so I pick up meth, besides it’s a great diet regimen! 😉 After awhile I’m going through an 8 ball of meth at a time just to keep me going. 3-4 years of meth, followed by heroine for a change of pace. It’s like a version of a doctors prescription to alternate between Tylenol and Ibuprofen, except I’m alternating meth and heroine. I wasn’t biased towards one or the other – unlike others – I had friends on both sides of the track. For those few years, I never intentionally slept. I mean I slept, but I never thought “I should go to bed” or “it’s bedtime”. I crashed wherever, whenever, but it was only at that point that I got rest.

At this point I can’t see the light of day, nor do I have alot of motivation to do so, this is just simply my life day in and day out. I am a master manipulator using and abusing anything and anyone that gets me from one hit to the next. While it feels good to feel good, being admired by so many, what I don’t realize, is, I’m being manipulated, used and abused by all around me just as much. So, here I am, feeling on top of the world, only having occasional rising fears of being without my safety nets.

Addiction of choice and why – explain the highs and the crashes – what did it feel like physically, mentally and emotionally.

Alcohol was always a factor, it was the first thing I did each morning and the last thing I did each night. Within a few hours of waking I had the shakes, looking for my next swig of booze – preferably vodka. The drugs weren’t near as important to me as the vodka. Drug of choice would be ecstasy, but isn’t something I did alot of because it was tough to keep the high for extended periods. The booze was my coping mechanism, while the drugs made me feel 10 feet tall and bulletproof, adding to my confidence. As my roommate says heroine was “a warm blanket of amazingness”. You could be getting your head bashed in with a club and think everything was good! But when the vodka was dry – it was instant panic, I was legit scared to think of not having any. I never did the drugs without the booze, to do it sober was actually scary to me. Straight up, uncontrollable anxiety.

How do you think this affected those around you? At the time, did you think there was any ripple effect to your family?

Nope, not at all. I thought I appeared to ‘have it all together’ and someone to be looked up too, and honestly, I was – in that world. Outside of ‘that world’, it was total denial when it was brought up to me, I didn’t think it was anything I couldn’t control.

Turning point in your life – the last straw – the one that started your journey to get to this point.

I think subconsciously, I knew when I was 32, when the realization that the onset of liver failure had begun. That scared me, but instead, I buried myself deeper. Fast forward to 2015, I have 2 warrants out for my arrest due to drug sales after being caught with a wire. After ins and out of what I hope would be a pass back out the door after lack of evidence, my lawyer informs me another county has additional sale charges on me. But, even then, I’m feeding myself lies to keep myself sane. This is the realization that my avenues of escape are looking thinner by the minute and I should probably start prepping myself for a long haul of sobriety, whether prison or long term treatment, I wasn’t getting out this time. I actually tinkered with the thought of taking the 120 months in prison over the option of mandated inpatient for a year.

The real, official turning point is when I’m sitting in the wreck room in jail – I come across the Holy Spirit Handbook. This changes everything. This is literally my “coming to Jesus moment” in a way I’ve never experienced before. There’s this feeling of total and complete peace, calmness and serenity that flows over and through me. And this time, I don’t have an ounce of any substance in me. For the first time in my life, I know I’m going to be OK, and I’m actually excited about being admitted to MN Adult and Teen Challenge. This is the start of a new life I didn’t know was possible, or perhaps wasn’t willing or ready to embrace all those years. It was better then any high I had ever experienced, it was the most peace and comfort I had felt my entire life.

What are some of the biggest challenges you’ve encountered since being sober?

I would have to say keeping my anxiety in check, although nowhere near what it used to be, it still arises, especially in a social setting. Learning to be aware of it and trying to find coping mechanisms to offset it is a work in progress. Another thing that I’ve been trying harder to work on, is learning to focus attention back on myself, doing the inner work required to heal. It’s always been a mindset of blame, pointing the finger outside of me, that I’ve never taken responsibility for my actions. Now I’m trying to learn how to balance things, patience with my kids and family, but especially with myself. Learning how to co-parent while also setting boundaries, recognizing manipulation, being open to feedback without defaulting to blame and just establishing myself. To try and retrain my brain to remember things and be aware without going back into default mode. I started so young, I don’t know that I was ever able to establish myself and my own true identity. I guess that’s the beauty in rebuilding.

What do you think are the biggest problems that come with the stigmas of addiction? What are some missing factors you feel are being overlooked when addressing these issues and the judgement that comes with them, especially in younger kids?

The lack of understanding coming from all angles, especially at home. I told my dad once about my anxiety, (although I didn’t know that’s what it was at the time), the response was along the lines of “deal with it, don’t be a pussy”. But the older generations didn’t discuss their problems, so maybe he didn’t know any other way to respond without thinking something was wrong with me.

I was sitting in jail after my second DUI, flipping through a magazine when I came across a Paxil ad. As I was reading the side effects such as racing thoughts, shortness of breath, restlessness, irritability, or difficulty in public places – I came to the realization that this was me! I am that blue pill – more like I need that blue pill! To realize that other people had these same symptoms was amazing to me, because I thought it was just me! I was so excited about the fact that this pill could help me that I went up and asked the desk clerk to give me some, not realizing it wasn’t that easy.

Another thing people don’t realize, is this isn’t just one set of people or only people of a certain social status engage in substance abuse. I used with plenty of people that came from higher social statuses, kids of doctors and other respectable careers. The stigma that only people that come from crap households or poverty level use substances to cope, couldn’t be farther from the truth! And yet we were viewed as the “scum” or “losers”.

Sometimes I wonder if I had known or learned to cope better with my anxiety if I wouldn’t have went to other substances to rid myself of these feelings that in fact were normal to many. Sometimes I think my parents should have just left me sit in jail the first few times I was in, maybe it would’ve changed my mindset. Instead it just enabled and reinforced my behavior, knowing they’d come to my rescue when I got caught again. But, I guess it’s hard to say for sure, either way, this was how it unraveled for me.

Has it changed your path or purpose in life since? Do you feel you endured it for a reason and are meant to do something with it?

Absolutely. I’ve lived my life unknowingly being so selfish, only worrying about myself, but now I know it has nothing to do with me. I realize it was all fake and false before, even looking back – there were so many odd things that happened that lined up in my favor – that redirected me. My life resides in Christ, which in turn out flows into everyone around me. The fact that I’m alive is evidence in itself of what my life purpose is. No one endures what I did and almost dies that many times for nothing. It’s all part of a bigger plan.

There is no denying that overall substance abuse, especially in meth and heroine are on the rise – what do you think are significant contributing factors to this problem?

Prescription pills are a big factor. Although this wasn’t a direct reflection in my case, I do hear of prescription pills being a sought out source, it seems common within the treatment world. They’re fairly easy to get a hold of. As far as the rest, I don’t know if there’s a certain “go-to” I think it depends on preference or whatever is available.

What and who do you see yourself as now? How would you identify yourself?

I am Joshua Kuhlmann, I am a child of God, saved by Jesus Christ. I know what the highest of highs feels like, along with the lowest of lows – simultaneously – from trying to catch a buzz in a courthouse bathroom to sitting in a jail cell reading the Lord’s word. I have done alot of shit, seen alot of shit – but I am truly grateful for every part of my journey. Because I know what it’s like to stand on that side, and I look forward to spending the remainder of my life standing on this side, helping others in their journey of recovery!

Despite where we’re at in life, we can all use additional support, visit www.crisisaverted.org for a complimentary phone call to learn more!

For more entries regarding personal stories surrounding addiction, check out Ron’s story.

*If you or someone you know is in need of help, here a general site/line to start with to better direct you of resources within your area drugabuse.gov https://www.samhsa.gov/find-help *

*If any of this resonates with you, or you know of someone it may help who is personally struggling or has family that is, please feel free to share on social media to bring forth awareness and hope, while breaking down stigma around this subject!*

Siblings Tribute – Jamie and Kristy

/ Revolution.07 / Leave a comment

kristy collage 2

Brynn and Jamie both sent me their responses to the entry on the same night. It was quite astonishing how many similarities there were between their stories. Although the response has been overwhelming in regards to the tributes, it saddens me to know how many people can truly relate to this heartbreak. Either by enduring it themselves or watching someone close to them endure it. It’s painful in all realms, each in their own way. But at the end of the day, our hope is that those reading this have a greater sense of hope in knowing they aren’t alone in their grief, their support or their fight.

*Disclaimer: A box is tissues is recommended – you’ve been warned! 😉

You and your sister (names, background, ages)- who were you both pre-diagnosis?

My name is Jamie (Puetz) Groebner, I was 29 years old when my sister Kristy Puetz was diagnosed with Ovarian Cancer at the age of 37, she fought a miraculous 9 years before passing away by my side on February 21st, 2014 at 4:15 am at the age of 46.

Who were we??  Very stubborn red heads, always looking for a good time!!                  Growing up with 8 years between us, we fought about everything… she was in charge of me a lot since my parents both worked outside the home.  When she was mad at me she would often pinch my cheeks together with her thumb and pointer finger.  I hated it. I usually ran from her, down the street to John Deere where my dad worked as a parts manager, crying my eyes out with sore cheeks. I knew he would let me stay with him until he was off.

As we grew older, we found out fairly early on in our friendship that we did a lot of the same things regardless of the fact that we lived miles apart.  We liked the same music, we sang with emotion in the car, we were passionate about our friends and their lives.  We were social butterflies at heart – we loved to plan a party, loved to be the life of one, and couldn’t wait to hit a happy hour somewhere! And it wasn’t for the fact of getting drunk, it was because being with our friends and laughing was so uplifting and we loved that! We loved making memories with our family & friends.

What battles (disease, metastasis, how many times in remission/relapse) did she endure and for how long?

I worked in the Baldwin Building at Mayo Clinic Rochester at the time of her diagnosis. My supervisor at the time seemed so cold hearted by not allowing me to go to Kristy’s appointments. That day when my pager went off, I picked up my phone and instantly could hear the gasps in Kristy’s voice when she paged me, through crying gasps she breathed the words cancer; and I immediately went into panic mode, I left work and ran down to the second floor to the room she was in with our family physician. I told no one where I was going because at that time none of it mattered, I just needed to be with her. The search began the next day to find the primary tumor. It felt like time stopped after days of invasive tests and biopsies, she was diagnosed with Stage 4, Grade 3, Epithelial Ovarian Cancer. The tumor had grown the size of a cantaloupe on her ovary in her abdomen. Our family hit rock bottom once we were given the grim news. Surgery was planned for March 10th, 2005.

I think back to the morning of surgery. At the time, my husband Ryan and I were living in Mazeppa.  Kristy and I talked on the phone most of that evening, as she packed.  I met my parents and her at the hospital the next morning, and immediately started taking pictures of her because at that time, her Oncologist told her she had maybe a year, if not less to live.  I started documenting everything that day. The updates, the calls, the pacing, I remember that feeling of my stomach turning inside out, sort of the way it feels writing this, complete torture. The worst part – I had to attend a mandatory meeting with HR at work or I risked losing my job. In the middle of that meeting I started crying, I couldn’t believe I was sitting there and not with my family. I said something along the lines of ‘while all of you are worried about who’s doing what at work, my sister is in surgery’, (I may have said a few other not so appropriate words as well) but I was so upset. I walked out, ran back to Methodist hospital, thinking for sure I was going to lose my job.

I just made it back to her room when the resident surgeon came up to talk to us. They opened Kristy up from sternum to pelvic bone and searched through her entire cavity to make sure they got as much cancer as possible. My first reaction was to hug her, that’s when the tears fell. My parents and brothers were there, each of them walked away engulfed with their own emotion.  We heard the elevator chime… I can still see her rolling down the hall at 6pm. She was so swollen, the largest I’ve ever seen her, all of it fluid. We were warned she would look like this, however it was so hard to see her look so different, (in the operating room they inverted the bed to help with the positioning of her intestine so they could work on detecting all of the cancer) little did we know this would be the new norm of her many hair and body changes.

I started talking to her right away, telling her I loved her, and that they got it all… I’ll never forget her eye opening just a little and tears fell… she heard me loud and clear. That night I slept in a chair, not a recliner although I wished for one, it was a wooden desk chair, but I kept telling myself, the pain I feel from getting a bad night’s sleep is nothing compared to what she is going through.

The next day I asked for a bigger room and by the third day we upgraded to a larger room, and I finally got a sofa sleeper. We watched so many movies, when it was nap time she always told me to put in Legal Eagles with Robert Redford in it…. that usually had us both sleeping in minutes! I never left the hospital during her stay. I helped her shower which may have been a true test of sisterhood. 😉 She had 3 drains coming out of her abdomen and it took her a while to be able to stand up without excruciating pain. Until she had the drains removed and enough strength to stand on her own I would get part way in the shower with her to wash her while she held on to her drains, shaking in pain, crying for me to hurry. My tears silently falling at the situation in front of us.

She even had me make a photo guest book of all her visitors, taking each person’s picture as they stopped by or as flowers and gifts were delivered. I had them sign a get well note on each page where their picture would be, and we put it together after she was dismissed and before she started chemo. Through it all, there were lots of tears, and lots of laughs too. She made the best of it, and never let people think it was as hard as it really was.

Kristy started chemo 6 weeks later, in April of 2005. From there it was recurrence in 2009 revealed through a liver biopsy, followed by a different regimen of chemo. In January of 2011 it was discovered that she had mets to liver and in the right lower quadrant. That round of chemo had to be discontinued due to severe dermatitis. Then it was hospitalization for a small bowel obstruction, which was the first of a few to follow. By November of 2011, the Ovarian cancer showed up again in the CT of her abdomen and pelvis. More chemo, more hospitalization, more operations, more nausea, more struggles, more tears, more heartache, more fighting. This roller coaster continues on and off with multiple hospital admissions until there were no more options.

Explain what impact this had on you personally and how it changed both of your lives/perspectives, good and bad.

I lost my best friend. The first half of our lives we argued and acted as if we hated one another…actually I drove her crazy, yet all I could think of was being just like her. When it changed, we had a connection like I’ve never had with any friend. Only sisters know what I mean when I say that, and I don’t mean to say it in a bad way because I have some truly great friends who I care about as if they were my sisters.  But it does not compare to the bond I had with Kristy, one that was built long ago. The bond that holds our past, our childhood, our family trips, our countless phone calls, and an understanding of one another, our bond, was solid as any iron or stone. Unbreakable.

The treasures are the countless strangers, physicians and nurses who became our friends and the connections she made at the chemo, which is more like a gas station really. The countless beds and chairs stationed in one area where everyone checks in to get filled up on poison. Kristy though, she changed the tempo on Gonda 10… if you ever visited her there, you always had an idea of what room was hers. It was always the loudest!  And she didn’t like to sit in the chairs much unless she was only going to be there for an hour or two. In and out she’d say, I want to hit happy hour at Jonnys! And if her cycles ran longer than that she usually asked for a room with a bed, because the pre-meds would make her tired. After her nap you would usually find her up walking the halls with her IV pole checking on others she had met the week before. Sharing a joke, there was always laughter  or, her calling maintenance to come fix something she seen was wrong. Everyone loved her. She brought social hour to chemo and she made it better by just being there.  She yearned for hope from others yet she gained so much more.

Genetics is a huge factor. After three tries we finally found out why she got it. The Gene mutation BRCA1. If my sister wasn’t so aggressive in her fight and in her curiosity of ‘why me’ … we wouldn’t know.  And with that knowledge she has saved me by making me promise her I would get tested. To think all the while I was trying to save her, in the end she saves me. Wow – that is love!

What did this consist of for you personally – to recall being a cheerleader on the sidelines, observing, but being unable to save them? (Ultimately the trauma of being the survivor).

From day one, I researched, I did everything I could have done to save her. I called all over the world looking for the right clinical trial. Each one would get shot down by different doctors due to a certain chemo she had taken, or the numbness in her feet and hands, the length of her disease, the stage, where it had metastasized. Each time I thought I found one that might work I would send it to a team of doctors I worked with who were my backbone of soldiers with their medical education. They would compare her to the study and we would all determine what the outcome would be.  I, of course would not take no for an answer so I would enroll her, only to find out later she wasn’t a match. I needed concrete information to prove me just what they had told me all along. Her cancer sucked the energy out of both of us. Watching someone I care so deeply get knocked back down after enduring so much. Time and time again she inspired people by keeping that smile on her face, even when deep down, she was miserable.

The illness itself is exhausting. Her only chance was the poison that was pumped into her body, and she had to find the strength and courage to stay alive through fatigue, vomiting, pain and sadness. She just did what any of us would do. Fight like hell to stay alive. Because that is all she wanted, was to live, love and be happy. The worst part, the suffering in the end… let’s be honest – it is what it is right….suffering? The cancer starved my sister. Suffering. It produced road blocks in her gut and her gut stopped working. Suffering. She could no longer eat or absorb nutrients. Suffering. She had a peg tube placed in her abdomen to help relieve the pressure so she didn’t continue to vomit multiple times a day. Suffering.

Do you feel you’re meant to do something differently with your life because of her death? And if so, what is your hope/goal? How do you want her to live on? 

I was in nursing school prior to both my mom and sisters’ diagnosis. I was released on a compassion leave from the program when my mom was diagnosed with terminal small cell lung cancer on March 8th, 2013.  I returned in the spring after her death, however my return date was only a few days after my sister was discharged home on hospice.  I wasn’t able to finish then either and was given my second check mark, meaning I wasn’t allowed to return. If I were to ever be a nurse I needed to start the program over. I felt as though I failed my family, my goals, and it was so stressful, but my heart was broken. School didn’t matter as much as my mom and sister – nothing does when you’re in that situation. Thankfully, I learned enough in school to know how to care for them and understand what was going on with their bodies, and to feel confident enough to be able to follow their wishes to die at home. For years my role was to help Kristy fight her cancer, then I was helping my mom too.

I’ve definitely changed. I was by her side to help her, guide her, and cheer her on, lift her up when she was at her worst, give her hope, and coach her through. When she died my caregiver role was over. I was lost… numb. The pain was like a dagger being shot into my heart and twisted a hundred times.  Over time, when I thought that pain would subside… I would be forced to be reminded it hadn’t… it’s only gotten more bearable. She was such a good person, sister, daughter, and an amazing aunt to my kids, and nephews, and Godmother to my son. For months I felt like I was walking around in a fog. Then I had genetic testing done only to find I was BRCA1 positive too. One blow after another, the hits just kept on coming. Surgery, menopause, patches, depression, wow…

Each day I think about her, and I think about what little I have went through and how awful I feel one day and how great I feel the next. I can’t even fathom what Kristy went through but I will say, I have learned how she put on her mask each day and made the best of it. I return to the promises I made to her that I would stay involved in her fight. I want to continue to help spread awareness to others about this horrible disease.  I hope as time goes on I can actually stand in front of an audience and not cry while I talk about her because I miss her so much. My goal is to continue to be an advocate for others by staying involved in the organizations that she was passionate about.

Kristy was my best friend, my sister, my rock. I thank God each day that he chose us to be sisters…

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In closing I want to share a wonderful note sent to her from a physician friend of ours: it’s pretty powerful so be ready… 

First of all, please accept my condolences for your loss.  It has been a terrible year for the Puetz family.  It just a year ago when Kristy’s mother was diagnosed with cancer and died within only a few months.  Kristy had a different course, living 10 years with cancer but, in the end, it also took her from us. We are here today to mourn the death of Kristy but also to commemorate her life.

I met her through Jamie around the time of Kristy’s cancer diagnosis and over the years have had the privilege of being her friend. We talked about many things but more than any subject was about how cancer affected her life. She was treated initially with the hope of cure but when the cancer came back the first time she realized she would never be cured. Being told one has cancer is an enormous shock because it is our expectation that our bodies will keep on working. When young, we don’t even think about our health.  We have injuries, infections, and so on but we always assume it will be ok and we will recover. Being told one has cancer changes this forever because the body failed us in a way it was never supposed to. Even when cancer is treated successfully, we are never the same.

Kristy handled her cancer better than anyone I have seen. She seemed to always look at the better side of life and, although she had her down days, she went on with the expectation she would be well.  Some people put their life on hold thinking they will resume it when the cancer is cured. They forget to live when they should be celebrating every day they have. Kristy did this; she had an illness but she was well.

I ask my patients if they have a spiritual part of their lives. What gives their life meaning? For some it is their faith but for others it is family, work, health, hobbies, volunteerism, pets and so on.  Each person has a different answer, but the basic question is “Why do I get out of bed each day?”  Because we “have to” is not a good reason.  We get out of bed to do something, see someone, accomplish something; we look forward to the day.  When health and other life changes occur, what we have relied on to give us meaning may no longer be possible. This may be a crisis because these things serve as our energy supplies and are the reasons should want to get better. The ability to find new reasons when the old are no longer possible is resilience. Kristy was amazingly resilient and why she is an inspiration to many. She found new reasons to live as long as her body would allow.

Funerals are for the living. We honor the dead by coming together to mourn our loss but also to celebrate their lives, remember what they mean to us and to tell their stories. Funerals should also remind us that we too are mortal and someday people will gather to remember us. We all should live our lives with this in mind in all our dealings with others, in our coming and going, in how we behave, and determining what will our legacy will be? We need to live mindfully which means being mentally present each day. Some people spend much of their time thinking about the past with regret or anger. Some spend all their time thinking about the future worried about what will happen and our inability to control it. We don’t, however, spend much time thinking about the present, yet it is the only thing we have.  I think this is best said by Jesus in the Sermon on the Mount in Matthew 6 25-34.

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Who of you by worrying can add a single hour to his life ? 28 “And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

We also need to live our life remembering it is not our own. Our life is a gift of God and we need to be ever mindful of Him.  We should live our life seeking Him and his righteousness because some day we will answer to Him about what we did with our life.   

I am sorry I cannot be there with you today but my thoughts and prayers are with you in this time of loss.

Larry Bergstrom

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This is a speech that Kristy had written for the Corn on the Cob Day Pageant.

This is a shortened and modified version to bring out some of the humor that Kristy brought forth in her every day life. While highlighting some of her own strength and bravery – that she worked so hard to bring forth during her own trials and tribulations. I have no doubt it was God’s will to help her help others during their journey, along with her mindset and attitude – is what brought her far beyond that original grim diagnosis of less then a year to live. To be the light through the dark, the humor through the pain and the rock through the unsteady waves.

“I always thought when I lost my hair I would be devastated.  Well that wasn’t so bad….the thing I missed most about losing my hair was losing my eye lashes.  I just felt naked without them….the best part was I didn’t have to shave my legs and my skin was so soft! I know there really isn’t any “best” part about cancer but if I had to pick one that would be it!!

Cancer is scary, it’s a scary word to anyone and living with it isn’t easy, but I tell myself that I am not going to let this cancer change me or anything I liked to do.  IT WAS NOT GOING TO CONTROL MY LIFE!

 I was told that my life would be like riding on a roller coaster.  The cancer would be active then dormant, I’ll go on a break and so on and so forth.

Cancer is devastating………………………..to everyone touched by it.

I have learned a lot throughout this journey.  There have been a lot of tears but there has also been a lot of laughter.  I’ve met so many people, and shared my story to others who get diagnosed so they know what to expect… or what to try that has worked for me – even though each case is different.  And if you know me, or follow my caring bridge page, weird things tend to happen to me and all you can do……….. is just laugh! Because I try to live my life to the fullest each day, and I try not to let this disease or anything else bring me down.

The theme for you is “home of the brave’ … and each of us is brave in our own way, my bravery comes from deep inside myself knowing I’m not giving up…..knowing I have an enormous support system in my family and friends.

For the girls sitting up here tonight…. Courage and bravery are not just about facing risk, but also, afterward, about going back to the people you love, your community and sharing your experience, and encourage them to be strong.”

Kristy

*If this resonated with you, feel free to share on Social Media – not only to raise awareness but to bring hope to any who may be struggling*

Siblings Tribute – Brynn & Jaime

/ Revolution.07 / Leave a comment

Blog-tributebrynnnjamie

There isn’t anyone that doesn’t know of someone that has battled a disease at some point in their life. Whether it be cancer, mental illness, eating disorders, cardiovascular disease, Alzheimer’s, alcoholism, or addiction – to some degree, disease is disease. Some have triumphed over their struggles, while others fought the battle until the end, only to lose the war.

Although we lost our siblings to different diseases, we still watched them endure hardships while fighting against something that, in the end, was stronger then them. We, as family, were forced to sit on the sidelines, unable to make their physical, emotional or mental pain cease. From various forms of chemo, radiation or surgical treatments to different anti-anxiety and anti-depressant medications- they were forced to put their mind, body and soul through some excruciating pain just to be able to add another day to the calendar.

While we all know of these people, we don’t really, truly know these people. We’ve all heard of stories pertaining to disease and death, however, it’s rare that we hear or see what happens behind the scenes. The lasting impact it has on both the patient and the family and the roller coaster of emotions that take place along the way. From the fight to the triumphs and back to defeat, from what seems like never ending decision making, just to hope it was the ‘right’ one, just to doubt it and yet be forced to trust it all at once. From the overwhelming support of those around you, only to feel so alone in the crowd of supporters. From the distress on so many levels, only to hope it’s worth every ounce of energy put forth by everyone. From the tears to the triumphs, from overwhelming sadness to finding laughter in the little moments, the heartache to the joys of the smallest things you never noticed before, from the heaviest of guilt weighing on us down to trying to see the bigger picture through the diluted veil. From watching them in pain in every realm, to one day being forced to feel much of that same pain. This is a journey that so many – too many – experience, but one that often times doesn’t get brought up in the rawness in which is truth for many. And I want to bring forth that rawness, that truth and the awareness behind it.

I feel truly honored to be able to share this ‘Siblings Tribute’ with 3 other strong, brave, compassionate and determined souls to bring forth both their siblings stories, as well as their own. Our hope is that this can offer a sense of peace for those who are struggling in any way – to know that you aren’t alone on this journey, whether you’re the one who’s in the ring for another round to fight, or the cheerleader on the sidelines – your story matters! This is Part 1 of a few entries and I am truly so grateful they agreed to do this with me! Although these entries were excruciating to write – I’m excited to share both of their stories, as well as their sisters battle against a disease we’re all well aware and hear far too much about – cancer.

*Disclaimer: a box of tissues is recommended – you’ve been warned 😉

Jaime collage 2

“Sisters from the start, friends forever from the heart.”

You and your sister (names, background, ages)- who were you both pre-diagnosis?

My name is Brynn Ashley Soderlind. I was 31 when my sister Jaime Teresa Gartner was diagnosed with breast cancer on October 14, 2011. Jaime was only 32 years old. I was 8 months pregnant with my first child as I sat in the waiting room of the doctors office. My three year old nephew, Jaime’s son Jameson, sat on my lap on a blue upholstered bench. He was such a patient child. He held my hand and we sat there mostly in silence. It seemed like years. We waited and waited and waited. Finally, three hours later, Jaime came down the dark grey hallway. Her dark brown long hair framed her beautiful face like a picture. I remember her brief eye contact with me and then her eyes quickly fixed on her son. Tears were pouring down her face as she opened her arms to meet his little body. He fell into her with relief. She looked to me and smiled as she wiped her tears quickly from her cheeks and shook her head “no”. I knew right then that the massive lump in my sisters breast wasn’t a cyst or an enlarged lymph node. My throat felt tight as I swallowed hard. My sister had cancer.

We grew up with a strong sense of self. We lived out in the country on a hobby farm with our loving parents and grandparents, some goats, chickens, pigs, dogs, rabbits and a blind cow. We had great company each day with our siblings- Ericka, Ian and Seth- and the neighborhood kids our mom babysat. We loved to hike on the land and explore the 132 acre woods that we lived on and absorb all that nature provided to us. Jaime and I loved to take our Red Ryder BB guns out and shoot targets that Ian would set up for us. Life was easy. Life was so good. We loved to go to Whitewater State Park and as teens we would spend most of our summer hiking and swimming. We also loved to travel and took several road trips together and with friends. We did almost everything together. Where there was Jaime, there was likely Brynn.

We would end up moving to Colorado together in 1999. We loved the mountains. We loved the experience but eventually we ended up back in Minnesota together.

Almost a year before her cancer diagnosis, Jaime and I were in Esthetician school together. Jaime and Jameson lived with my husband Adam and I in our condo. Jaime and I had a long history of sames. We had the same jobs, wore the same clothes, loved the same foods, had the same friends, lived in the same cities, read the same books, listened to the same music. Her and I shared a bedroom, secrets, underwear, makeup, cars, lunch money, dreams, aspirations, germs but mostly, we shared genetics. I was encouraged to have genetic testing done shortly after my 33 year old sister had a bilateral mastectomy. I knew that if my sister had breast cancer at 32 years old, I had a pretty good chance of getting it too. When I got the genetic counseling and testing, my daughter was a baby and still breastfeeding. I remember the fear surrounding a positive genetic mutation. What if I too shared the BRCA2 mutation? I knew for me, it would mean a mastectomy and possibly a hysterectomy. That meant no more children. I was ok with that as long as I had an upper hand on controlling the disease.

I had a strong feeling that I didn’t have the mutation. I soon learned that Jaime had the same feeling. Sure enough, I tested negative for the BRCA2 mutation. I cried so hard when I heard the positive news; half of me was relieved and half of me felt guilty. I know it may seem strange, but it was like we had always shared everything and now we didn’t. And I was happy and devastated all at the same time. You see that’s the tricky part about disease and being a caretaker to someone you love so much. The cancer may have taken over my sister’s body, but it also consumed me, differently, but still the same. It completely changed everything.

I thought about cancer all day long. I thought about ways to help heal. I threw myself into research and tried to educate myself as best as I could. I attended every appointment. I quit my job to care for her full time. Her cancer became my cancer. Her life sort of became my responsibility. I’d lie awake at night running through all of the “to do’s” Did she take all of her meds? Did she eat enough? Were all of her appointments scheduled? Did we write down all of our questions? I learned as much as I could about her tumors on my own time. When they told her that her tumors were ERPR positive, HER2 negative, I researched. When they told her that she needed  radioactive Theraspheres implanted into her liver, I researched. When they said there was nothing left to try, I researched. I always wanted to find a way to save my sister’s life. I wanted her dream of becoming a grandmother to come to fruition. I wanted to see her pain-free and dancing in the woods at night like we used to do when we were young. I wanted to travel again, hike, shop, sing, learn to knit and play guitar with her. She always wanted us to take knitting classes and guitar classes together, but I guess we never made the time. I wish we would have figured out how to make it work. Especially guitar lessons. We both loved singing and music so much. I imagine how therapeutic it would have been to be able to play guitar and sing together during her 4.5 year fight against cancer. We both had our own guitar and knitting needles, but never learned. Now, I am ready to take guitar lessons. I will learn to knit this winter. The thing I’ve learned is that life doesn’t wait for us. We have to take advantage of the time we have- right now- today. If there is something you want to learn or experience, go for it. Set goals! Chase dreams! Jaime’s goal was to make it to Mother’s Day. My goal is to make sure that women aren’t dismissed when they find a lump in their breast, at any age. Jaime was dismissed by 3 different doctors before the fourth ordered a mammogram. 3 different doctors! None of them thought she had cancer because she was young and because they told her cancer didn’t hurt, so her lump must have been a cyst or something. It will take me a lifetime to get over the dismissal she received from those individuals. If a 31 year old woman complains of discomfort and has a sizable lump, it should be taken seriously. Mammograms save lives. Every lump should be examined thoroughly.

What battles (disease, metastasis, how many times in remission/relapse) did she endure and for how long? Explain what impact this had on you personally and how it changed both of your lives/perspectives, good and bad.

Jaime possessed a natural ability to find the positive in situations. She never complained about her circumstances. Not one time. She never had a pity party. I’m sure on her own time alone she often struggled, but she never divulged any of those feelings. She made light of the adverse reaction she had to steroids during her radiation treatments. She would joke about how the development of Cushing’s Syndrome was the worst part of the entire cancer experience because she had a 100 pound weight gain which was painful and left her almost unrecognizable. Her skin began to split in areas from the rapid weight gain. Her body ached all over.  They learned that the steroids they were giving her for pain control caused her adrenal glands to fail and shut down. Jaime didn’t mind loosing her hair. She liked hats. She knew she could manage the mastectomy with future reconstruction surgery and prosthetics. But Jaime did not know how to be ok with the Cushing’s Syndrome and her physical immobility and intense pain. In my opinion, the most challenging piece through her cancer journey the rapid weight gain and pain that accompanied it like an orchestra.

Jaime was diagnosed in October of 2011. She started chemotherapy quickly. Her lump was so invasive and so aggressive that they feared removing it without hitting her with a cycle of chemotherapy prior to surgery. Jaime had 7 rounds of chemotherapy between October 2011 -April 2012. On May 11, 2012, Jaime underwent a bilateral mastectomy and sentinel lymph node dissection. They inserted tissue expanders inside the chest wall to reconstruct her breasts with implants. The expanders were placed behind the muscle of the chest wall. The idea was to slowly stretch the skin by filling the expanders with air overtime to accommodate an implant.

We moved into her apartment in May after her mastectomy to care for her and Jameson. She couldn’t be alone and certainly couldn’t care for her three year old son by herself. I spent my days with Jaime, Jameson and my 7 month old daughter Poppy. I took her to appointments, cared for her and the children and did all of the normal day to day tasks and errands. I had so much help from Adam at night and on the weekends.  Following her discharge from her mastectomy, Jaime’s pain continued. She had so much pain. She was so weak and tired. Her surgery sites began to show signs of infection. I called the clinic with great concern. I was reassured several times that what I was describing was “normal healing”.  When her pain became unbearable, I brought her into the ER at a different hospital. She was quickly admitted after examination. She went into surgery the next day to  have the tissue expanders removed because she was septic. I felt so angry and so frustrated. I felt like I let her down. I had called several times with concern. I was always told that it was normal. Now she had a major setback in her recovery.

After that surgery to remove the expanders, Jaime never really felt good again. Ever. It was like the infection had gotten into the core of her being. She was so unsure. Her days and nights consisted of doctors appointments and pain management. After that surgery she went six months without seeing a doctor. She moved to Waseca and rented a house. She and Jameson lived right next door to our mom and stepdad. She just never felt good. Mom and Dad expressed concern about the lack of medical care and lack of follow up. Jaime was in a deep dark depression. She seemed to feel like they did everything they could do for her and this was what she would endure. We felt that she should be closely followed with scans and check ups. Nothing was scheduled. She had no desire to go to the doctor. Then in November of 2012, Jaime came to visit us in New Hope. She was in so much pain in her hips and low back that she could hardly walk. The pain was constant and ibuprofen wasn’t even coming close to touching it. Adam encouraged her to go to the ER. After some persuasion, she agreed. The ER dr in Plymouth MN listened to her history and decided that a pain injection of Tordol  to her hip would suffice and he sent her home. No scans were ordered. Her blood work showed elevated white cells and all of her numbers were either a bit high or low in almost every category. They knew she had cancer earlier that year. Why wouldn’t they have investigated her complaints and concerns more thoroughly? She was a 33 year old single mother with a history of breast cancer. I will never understand the lack of care. Fast forward a month later, she has similar complaints of low back pain and hip pain. Adam takes her into the ER again, and she gets the exact same diagnosis and treatment. They say it’s likely menses pain and they encourage a hot bath and ibuprofen. That was in December 2012. A moth later, on January 21, 2013, she fell in the bathroom in the middle of the night while visiting us in Duluth at our new temporary home. Jaime managed to crawl into the living room where she was able to wake us with screams like I have never heard before. After helping her up, Adam got her into our SUV and drove to the ER at St Lukes. At 3am on January 22, Adam texted me that he and Jaime were meeting with a neurosurgeon and likely she needed spinal surgery to fix her broken lumbar. He also mentioned that they were quite confused how she managed to break her lumbar by falling in the bathroom since the lumbar is the strongest part of the spine. After laying flat for 4 days in a body brace, the biopsies revealed that Jaimes entire skeleton had been infiltrated with breast cancer. I remember the look on her face when they told her that her breast cancer was a stage 4 and terminal. She looked relieved. She looked frightened. She looked so young and so lovely. I was engulfed with sickness and anger. Terminal breast cancer?!! How did this happen?

After she broke her back, she realized that St Lukes hospital in Duluth Minnesota was where she was meant to be. She began her care and treatments of weeks of radiation, many surgeries, continuous chemotherapy, injections in her neck and back and pain management. The nurses and doctors were incredible at St Lukes. She felt cared for and loved and validated. Her pain was finally explained! She could finally trust medical staff. She became so close to her oncologist, Dr. Based Goueli and her nurse Terri. They gave her the greatest care and love. She trusted them. I trusted them. We were able to navigate through all of the bad news together and even in her final days, she felt comfort and trust when she talked to Dr Goueli or Terri specifically.

During her battle, she also had to have a hysterectomy. Pathology of her ovaries detected breast cancer. From there, Jaime’s cancer spread into to the liver. Her care team kept up on her treatments of chemotherapy and she was able to fight for another year and a half. Jaime ended up passing away on a beautiful sunny Thursday morning in the arms of me and our older sister and our parents. Jaime had been in hospice care at St. Luke’s hospital for less than a week. Jaime died from liver failure caused by metastatic breast cancer to bones and liver. She had so much trouble breathing in her final hours. I remember feeling like she was drowning and I couldn’t pull her up or give her air. She fought until the last breath. April 14, 2016 was the hardest day of my existence. I lost a big part of myself when she passed. She had been unable to communicate the last day, but moments before she died, she opened her eyes and made brief eye contact with me and began to cry. She quickly shifted her eyes to our sister Ericka as tears fell down her face. Her eyes fixed towards my parents with her last breath.

I remember my mom placed her delicate hand on Jaime’s sweet face as she gently ran her palm down over her eyes to assist them to close. I remember the sound of my dad pulling a bandaid off of Jaime’s arm and throwing it across the room as he wept. I continue to replay these moments over and over- just like the the day she was diagnosed. The connections. The similarities. The tears. The beauty and the tragedy of it all. The brief eye contact that cut like a knife, the tears that poured from our eyes like wine, and the fear and yet the calming sense of peace that embodied all of it.

What did this consist of for you personally – to recall being a cheerleader on the sidelines, observing, but being unable to save them? (Ultimately the trauma of being the survivor).

I am forever grateful that I was able to care for my sister during her fight with cancer. I was able to support her and fight right along side her. I made sure she knew that she wasn’t alone. It’s been a month since she passed. The sorrow and pain really does come in waves. Everyday I wonder if there was anything more or anything else I could have done to help her have more time. I guess there will always be a part of me that will lament over the possibilities of treatments and cures. She ultimately decided that she would fight until the very end and she did. She fought so hard. Now I sit with my sword down and my shield up. I am still at war but all of the enemies are gone. I am less now. I am forever less without her here beside me. I will never understand why my sister had to fight so hard and ultimately die fighting breast cancer.

How has this changed you and your life course? 

Jaimes diagnosis absolutely changed me. I changed because I had to. I quit my job to care for her, we cancelled a move across the country to care for her, and I directed my focus and energy towards her health and healing.

Jaime and I were somewhat different from one another. Physically we were basically opposite. Our personalities, although different, meshed as we complemented each other well. We understood each others sense of humor. We had so many common threads and so much interest in one another. We had our own language and the ability to read one another with little effort. Sometimes we even felt one another’s pain or discomfort when apart. Jaime was 20 months older than me. We were only a grade apart in school. She always joked that I was the “big sister” and she was the “little sister”. I was taller, so that was ok with me. I will remember Jaime as an intelligent, loving, generous, carefree, slightly unpredictable, esthetically well maintained, stylish woman. She always had a big beautiful bright smile and she was always late for everything.

Since her passing, I have had a strong pull towards becoming more carefree and less concerned about details that don’t matter. I’m trying to learn to live in the moments that we are given each day.

I am contemplating my next steps and trying to discover what is best for me and what is next for me now that she is gone.

Do you feel you’re meant to do something differently with your life because of her death? And if so, what is your hope/goal? How do you want her to live on?

Jaime left me with three quotes:

“Be a rainbow in the cloud”  

“Something will grow from all you are going through, and it will be you.”  

 “Don’t worry, No one likes a know-it-all”

I am doing a lot of soul searching and digging deep to find my balance and my purpose in life. I believe that Jaime’s spirit will help to guide me down the best path.

I do feel that I have great compassion and empathy and love and concern for others. Jaime has always encouraged me to become a nurse… but she also wanted me to pursue an acting career and become a professional photographer so I’m a bit confused about her impression of my actual talents or calling. I guess I may be confused as well? I feel like I need to find a vessel that allows me to help advocate for people struggling to find the medical care that they need and deserve. I don’t want one more woman with a lump in her breast to have to go to four doctors just to get a mammogram. I want to bring awareness to breast cancer affecting young women. Breast cancer isn’t only killing post-menopausal women. Breast cancer doesn’t discriminate. Men, women, young and old are all candidates for breast cancer. Screening is key! Early detection saves lives. Genetic counseling helps us to make informed preventative decisions  about our health. Who knows, maybe my sister would still be here today if the first doctor who saw Jaime would have ordered a simple mammogram.

Jaime will live on in the masterpiece she created. Her strong loving intelligent boy Jameson carries her beauty, strength and perseverance. He has her personality and her heart of gold. Jameson is the greatest legacy and a beautiful reminder that my sister still remains.

**If this resonated with you, feel free to share on Social Media to not only raise awareness, but bring hope to any that may be struggling**