Red Sky

There’s a red sky at morning,

Where I hoped you would be.

There’s a sense of belonging

That I desperately seek.

As I stand in the shadows,

Hiding safe from the rain,

I’m aware of the sound,

I’m alone once again.

Is it straight fact or fiction

When you tell me your tales?

Is there somewhere to hide

When all sympathy fails?

There’s a red sky at morning

And I’m straining to see

If there’s anything left

we can still call our own

As the fog slowly lifts,

I can see I’m alone

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Keep Calm and Eat Spaghetti

Tonight I reached an entire new level on this adventure I call motherhood; I made dinner based on what dishes were clean. 2 bowls, 1 plate, and a plastic princess bowl. This week has been crazy. Every week is crazy. The sink overflowing with dishes. It’s OK though, it matches what I think might be a laundry hamper. I’m certain it’s under there somewhere.

Spaghetti saves the night once again. I appreciate its versatility of being able to be eaten from a bowl or plate. It’s a little bit of magic at the end of this incredibly long day. Most of my family will be happy with the meal selection and one will not. He’s learned to not complain about it and I am grateful. I need something uncomplicated today. I want a sign that reads, “Please excuse our mess, Mom has been busy…for awhile”

As I was cooking dinner, my oldest assumed his position on the other side of the counter pacing and telling me about all the things on his mind. This is our time. Despite all the stresses in his life this is the time he talks about everything calmly, like I am a peer. It’s a nice change from the last two nights. We’ve been arguing a lot lately. It’s not been easy. It’s not been fun. Life as a teenager is complex. Mom of a teenager is hard. I am new to the later.

I glance at the clock as I drain the noodles. So much for my goal of eating dinner before 7. It never happens. I vow to reach my goal tomorrow as I make my way to pull my pre-teen out of hibernation and join the family. I have faith in me. I am capable of anything I want and I really want to eat dinner before 7. I also really want my daughter to be more engaged with the family.

She’s been struggling since switching schools. Logistically, she had to switch schools. We made a decision to try a charter school and the change hasn’t been pleasant. In fact, it’s been awful. I made the change hoping and praying that it would be the change needed to make some positive changes. I made a mistake and my kids are paying the price. I’ve got to do something about that.

My husband emerges from his office. We discuss our schedules and determine that if we want to spend time together today we both would need to work from our laptops on the couch. Work is beautifully busy and he is supportive. I am lucky and I miss him when our work lives keep us apart.

This Mom gig isn’t easy. No one told me how much I would cry, how there would be days that I feel so defeated that hiding under a rock (or my closet –which isn’t even big, by the way!) seems like a very enticing option. Or, that the criticism and praise that I receive from my children would be far more significant than any corporate annual review.

Some nights I lay awake making a mental checklist of everything I will do better tomorrow. Sometimes I lay awake concerned that my son won’t find his way or my daughter won’t see her worth. Sometimes I lay awake praying, with many tears, for more patience. I will beat myself up over the fact that my daughter has hid her homework all year. I will take personal responsibility over the fact that my son refuses to eat lunch. I will feel frustrated and Google the night away about parenting methods.

This week has been tough. However, among all the chaos we had the sweet moments. After two days of fighting, my son gave me a hug and told me that he was sorry. He also told me that I have beautiful singing (He sure knows the way to his mama’s heart)! He hugged his sister while she cried about the kid who insists on taunting her. My daughter told me that she hopes we are always best friends while ⁷we chatted about our upcoming projects. More importantly, we ended the day with me sandwiched between my kids and husband watching Stranger Things. It’s worth it.

I realize more than ever that all relationships have highs and lows, the relationship with my children included. We go through our lows and it will either break us or make our relationship stronger. I pray for the strength of it all. More importantly, I pray to find acceptance with the imperfect. I’m frequently asked, “how do you do it?” Please know that I have somehow found just enough acceptance in eating spaghetti at 8pm from a plastic princess bowl.

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 Putting the Pieces Together

10 years ago we sat at a large round table in an unfamiliar elementary school. “This is your team,” explained the family case worker. I’d come to know her very well over the previous months. When my son started the Head Start program, she was the one who reached out to me when concerns about “abnormalities” became obvious and, subsequently,  the desire to test my son.

We had spent weeks testing and observing behavior in various situations. At this point in my life, he was my only child. He was quirky but loving and fun! Sure, it was a little odd when he would line up his toys across the floor and then meltdown when one wouldn’t hold it’s position, but he was so engaged with the activity that I found it impressive. Sometimes he would spin in place for what felt like an eternity, a process that couldn’t be interrupted. Clothing was always an issue, tags bothered him and socks/shoes were always “too tight” despite the size. The other differences weren’t as obvious until he was among his peers.

All of it led to this moment. All the tests, meetings, and phone calls defined with a classification. “Mrs. Miller, your son is Autistic.” The room froze with everyone focused on me and I realized they needed a reaction. Cayden was playing on the chair next to me, strategically putting a puzzle together. I had learned that he loved puzzles and I bought a truckload for him to play with. Once he solved the puzzle, he could put it together in record time, and then he’d abandon that puzzle and move to the next. The puzzle he had been working on had a couple of challenging pieces and I watched as he rotated the last couple of pieces into various ways, trying to make it fit. I shuffled his moppy hair and he looked up and gave me his obligatory smile before getting back to the puzzle.

“OK, what’s next? What do we need to do?”

We discussed a strategy, various therapies, and modifications for school. We signed a lot of papers and walked out the door. As I was putting my son in his car seat, the case worker met me at my car, “I just wanted to make sure you’re ok. Most parents get pretty emotional and you seem to be handling this really well.”

“This diagnosis doesn’t change the fact that he is my son. He is the same boy who walked in that office as the one who walked out. This just better helps us know how to provide him with what he needs.”

After this, she had me talk to several families who were struggling with this life-defining diagnosis, some afraid to begin the testing process. It’s not easy to allow a system to attach a label on to your child, however I had decided that it would be far more challenging to fight the system to bend to the needs of my child without it. Either way, it’s challenging.

We had decided early on that we weren’t going to tell our son, in an attempt to let him gauge normal on what “normal” was to him. I never wanted him to use this diagnosis as an excuse to fail or, even worse, not try. However, as the years passed the dialogue changed.

What is normal? In our world, normal is:

  • Baggy socks, turned inside out
  • Soft, tagless t-shirts
  • Breakdowns over touching dirty dishes
  • Dealing with bullies
  • Anxiety over leaving the home or playing outside, because of past interactions with neighbors.
  • Anxiety of wanting to have connections with people but not understanding why the connection isn’t there.
  • Inability to make eye contact in stressful situations (when most adults demand it)
  • Stuck on the same thought process for days at a time…he has the memory of an elephant.
  • Daily phone calls to/from school. There’s never a dull moment.
  • Social anxiety.
  • Depression from “feeling different.”
  • Friends/neighbors who aren’t allowed to interact with him.
  • Abusive teachers.
  • AMAZING teachers!
  • Escalating from zero to sixty faster than any sports car, for a variety of reasons – may the odds be ever in your favor figuring out why.
  • Daily/hourly pep talks to get through the day.
  • Dreading changes in school schedules, including substitute teachers (who are typically not trained) and assemblies, or anything messing with the lunch schedule.
  • Changing our parenting approach over and over again, to find the one that reaches him.

Someone amazing told me if you’ve met one person on the autism spectrum, then you’ve met one person on the autism spectrum. Autism is defined by a spectrum of characteristics and while one thing may be present in one child, it may not be present in another.

Some amazing things that are also our normal:

  • He sees the world as a movie and is constantly creating new ones in his mind.
  • He’s ultra-aware of others emotions and perceptions. If I’m having a hard day, he’s eager to give me a hug. He’s also very aware when someone doesn’t like him and he’s usually right.
  • He seeks out affection, something that is unique from what others perceive Autism is.
  • He contemplates theories of Science and creates his own.
  • He can solve puzzles faster than most, which makes him an excellent game partner.
  • He loves art. He appreciates art and sees the stories that are untold.
  • He’s the definition of loyal.
  • He can tell you what he got for Chrtistmas when he was 3 years old, the conversation we had about that one thing when he was 5, and who directed all his favorite movies, who acted in it and what other films they’ve been in, what the critic reviews are, what year it wrapped, and why the director cut a certain scene. But, he can’t remember to tie his shoes.

More importantly, while I have shed numerous tears, pulled my hair out in frustration and know without any level of uncertainty that there will be more tears and more hair pulling; this kid is going to do great things!

His gift, albeit in a form of a diagnosis, is to view life in a way that most are incapable of doing. It’s a beautiful thing, trapped in the world’s perception of what autism is. Throughout this journey, we’ve met many other families that have been touched by others on the spectrum. Some high-functioning and some non-functioning, each with their own incredible story. None easy. 

As a parent, I pray for easier days. I pray for things that can be done without upheaval, aside from xbox and movie making. I pray for positive relationships. I pray for him to see how amazing he is. Above all of this, I pray for society to become educated and tolerant.  Until then, we’ll just keep moving the puzzle pieces around until they fit.

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My Hollywood Love Story

When I met him I had just got used to being single and enjoying it. I had traveled to Europe, I had gone out on fancy first dates, and I had found a happy balance with work, school and life.  I had ended a tumultuous 5-year off-and-on relationship about 6 months before and was having a hard time not comparing my ex with every suitable bachelor. Then I met him.

I instantly felt at ease with him on our first date and we rarely spent another night apart. Although most of time we discussed how we weren’t in a relationship, we were always together. We attempted to date other people. Once while I was on a date he and our friend took turns calling me, asking me to bail on my date and come hang out. I bailed on my date. Shortly after he told me that he really didn’t want me to date other guys.

I wasn’t in love. I just wanted to be with him all the time and do goofy projects, have Chinese food picnics in bed while watching movies, and talk about ridiculous things. And I didn’t want to do that with anyone else. He was the first man that made me not think about what’s-his-name.

After a short several months and with a twist of fate I became pregnant. We decided to join each other on a journey. We would become husband and wife. We would have a family. I wouldn’t have chosen it with anyone else but I wasn’t in love. I was enamored by the adventure that I was taking with a man that I adored.

I’m not saying that I married a man I didn’t love. I just really didn’t know what love was/is until I married the man.

We’ve had bumps in the road; sometimes those bumps were more like cliffs leading to sharp, dagger-like rocks at the bottom. There were times I wanted to walk away, or he wanted to walk away, and even times we both wanted to walk away. We’ve had people cheering for our successes and those hoping for our failure.

Last year on our anniversary we were standing on top of a dinner cruise ship in the rain, and I realized, ‘this is what love is!’ It wasn’t like in the movies. There were no symphonies and there were no dramatic moments where he chased me down and professed his love.

It started that one night when I was 120 months pregnant and we decided to go out to dinner. I was uncomfortable, overheated, and miserable. I ended up sick a few steps from the restaurant entrance as he covered me and told me that no one could see. I knew he was lying but I loved him for it.

It was the time he told me that he wasn’t comfortable holding hands all the time but still did/does it because he knows that I love it.

It was the time that he went to the store three times to buy the right vinegar for me and just smiled when I decided to abort the food project altogether.

It was the time after I had our son and saw my stomach in the mirror for the first time; he told me how beautiful my saggy skin and stretch marks were because of what we had created.

It was the times I have fallen apart and he quickly reminded me that he was at my side.  As well as the times that he has trusted me to fall apart and need/want me at his side.

It was that moment when we both wanted to walk away and I cried and told him that I felt like he didn’t see me anymore and at that very moment, he saw me!

It’s the fact that I told him on our honeymoon that the only thing I knew was that I needed to laugh with him every day for the rest of our lives. We’ve missed a few but we’re pretty good at the laughter thing!

It was the time when I said that I couldn’t stand our dining room table for one more second and asked him to take it to the backyard so I could do something new to it…and he did! No questions asked.

It’s literally every time I see him engaged with our children. Every time.

It’s the many times that I have had a new idea or a new hobby or a new found passion and he encouraged it – and more importantly, supported it!

It was that time on top of a dinner cruise ship on our twelfth anniversary, standing in the rain, at the end of an exceptionally long Lupus flair up and telling him I felt damaged, broken, and felt like I was losing myself again. He held me and then swept me away on to the dance floor. (Reason #1,575,121 that I love him, he dances with me!)

The list is pretty long and I’ll spare you! I’m not too proud to say that among the moments of “I’ve got a good one,” there have been plenty of, “what just happened?!” And I know it goes both ways, despite my obvious perfection.

The point remains, love goes beyond the butterflies and weak-in-the-knees moments. That’s lust. Lust is wonderful but it’s not love. True love is the result of all the good things and all the challenges combined. It’s acquired by patience, forgiveness, tolerance, hardship, heart break, sickness, success – all of those things that can break you but ultimately bind you together even closer because you survived! Not only did you survive but you still like each other a lot and want to keep going! And at the end of it all, you too, can find yourself standing in the rain kissing the person you love, before being swept off of your feet on to the dance floor.

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How to Change Your Life Overnight

You didn’t really think this was going to be a step by step guide on how to change your life overnight, did you? Does such a thing exist? If it does, please send it my way! Aside from that, I’m sure I am the least qualified person to give such advice. What I can do, is tell you how I changed myself from the most miserable person in existence to the ray of sunshine that I am now. Or at least, a partial ray of sunshine.

First, a little history. On April 23, 2012, I found myself sitting in the corner of my office, crouched in a corner at 2am, sobbing uncontrollably about the current state of my world.

Everything was bad.

I had chosen to pursue a doctorate, it seemed to be the next logical step for me but mostly because I didn’t know what else to do. I hated it. In fact, I hated the field of study I had chosen in general. I hated my job. Every morning when I woke up, I dreaded the thought of going there. I wanted to make a difference in the world and I was not making a difference at all; I had become a zombie in corporate America. I hated being a Mom. From the time I woke up to the time I put them to bed, it was a fight. A fight to get them to daycare, which they hated and I hated because they hated it so much. The couple of hours that I saw them at the end of the day were the worst! Rushing to “after work” activities, rushing home to feed them, rushing them to bed so I could rush to my homework.  I hated being a wife. My husband had a job he loved (still does),  and I was jealous! He traveled a lot and I was jealous. He would call me from a different city, out with friends, and I was jealous. My perception of the situation was that he had a life, while I sacrificed my own for our family. I didn’t feel connected to him. We  had just moved to a new city and I felt isolated. I hated myself. I felt like the shell of my former self, prior to kids, prior to marriage. I hated the question, “what do you like to do for fun?” I never had an answer and it depressed me. It was a recipe for disaster. And that disaster found me sitting in a corner of my office a complete wreck. I didn’t want to feel that way anymore but I just had no idea how to do anything different.

The next day, I woke up and silently got my kids ready for the day. There were no fights. My son, who is the master at intuition, just hugged me over and over again. My heart broke with each hug; I felt like a failure. I wanted to love being a Mom so much! I wanted to love my life! I dropped my kids off at daycare and drove to work in complete silence. I love music but the thought of listening to anything regarding human emotion made me physically ill. I got to work and cried in my cubicle until I told my supervisor that I just couldn’t be there that day. I didn’t pick up my kids. I drove home, climbed under my covers and cried. I was broken. In this very moment I realized that the hypothetical rug had been pulled out under my feet and while I stood there confused, I had to make some choices. I could choose to be miserable or I could choose to be happy. It sounds so simple. It’s not.

I inventoried my life and I made a very black and white decision about each element:

Am I going to run away? This was truly considered as an option. I had made a habit of doing just that most of my early adult life. That’s why I moved 6 times in one year. During the time between my 2am breakdown and this inventory I had talked to a couple of people and realized that it’s more socially acceptable to walk away when you feel wronged. It’s justified. You should be angry at the state that others put you in. I realized that if I did, then what? Would I wake up and suddenly feel happy? Or would I be more angry that no one chased me? My most loved quote, “Insanity is doing the same thing over and over again expecting different results,” had never meant more. I chose to stay.

Am I going to be Mom? I don’t have to be a Mom. There are women who choose to walk away, and I suspect it’s not out of lack of love. I chose to be Mom. It’s not easy, in fact some days are brutal. But I love my little monkeys more than I love myself. I chose to stay and I chose to be happy about it.

Am I going to be a wife? I chose yes. And I emphasize the “choose,” marriage isn’t easy. But I made the choice to do it. I can survive independently. I don’t have to be married. In fact, it might be easier in some ways to not be married. But I chose yes and made it clear at that moment that it’s our job to make each other want to be married. There is a huge difference.

Am I going to get a doctoral degree? No. With all the tears shed while working on my bachelor and masters degree, I had more moments of accomplishment and happiness that leveraged the nights of late studying and tears of frustration. There was no leverage in the pursuit. I dreaded it. It wasn’t worth it. Nothing about it made me happy.

Am I going to stay at a job I hate? This was a tricky one. We were a two-income family. I knew that my husband would support me if I had a plan. It took me a little time to answer this question, but acknowledging my dissatisfaction was key. Up until this point I had sugar coated it as if that would make me like it. Ultimately, the answer was no, I wouldn’t stay. I chose to search for my passion, but I digress.

Am I just going to hate myself? I honestly didn’t know how to approach this, but I knew how to not approach it. I had to stop putting myself down for my lack of perfection. I had to stop blaming others for my relationship with myself. I had to stop saying no to new opportunities. I had to stop looking for excuses to fail. I had to stop ignoring the problem.

When all was said and done, I realized that the only way to change my circumstances was to change myself. If I wanted my life to be different, I had to do something different. Change was never going to come by going to bed every night thinking, “I am going to be a better Mom tomorrow” or “I’m going to make my husband love me in a better way” or “I’m just going to go to work tomorrow and love my job!”

I emerged from my blanket cocoon with intention. I washed my face, picked up my children from daycare with an extra enthusiasm as they wrapped their arms around me with unconditional love. When we got home, my son asked if they could put on a puppet show for me. It’s one of my most favorite memories with my kids. At that moment nothing else mattered. Somehow despite my feelings of inadequacy, my kids still loved me.

That night I reviewed my choices and decided on my actions to support the decisions I had made. Recognizing fully that you cannot control others nor their choices that impact you, I needed to take accountability for my role in my own life and relationships. I had allowed myself to become a victim of every negative circumstance in my life. Realizing my responsibility gave me more resolve to change my mindset. I decided I needed to put out what I expected to receive. If I want my husband to connect with me, I need to connect with him. If I want to be happy, I need to do things that make me happy. If I want to love being a Mom, I need to be a loving Mom.

The next morning I woke up and embraced the different. I woke up early and I worked out, instead of hitting the snooze a million times. I got ready for the day and I put on makeup, instead of the slicked back hair and haphazardly put together outfit. I made my kids their favorite breakfast, instead of the rushed toast on the napkin as we’re flying out the door. I didn’t text my husband and tell him what a pain it was getting the kids out the door, instead I texted him and told him how grateful I am that he works so hard and let him know we missed him. I didn’t dread going in to the office, instead I was excited to talk to my co-workers about the things going on in their world. I didn’t do homework at lunch (which I frequently resented), instead I drove around and thought about the things that I could do to make a difference in this world. I nervously signed up for a yoga class. I bought a book to read to my kids. I bought a pair of running shoes. I decided to let go of all of the excuses that I had to not succeed. I silently ended relationships that encouraged misery and decided to focus on the relationships that encouraged happiness. I called my academic advisor and dropped out of school. I googled lists of hobbies and picked a few that seemed interesting. I took action! The day after that, I took action. The day after that as well. I had frequent disagreements in my head, Casey the Old vs. Casey the New. I just forced myself to get up and keep taking action.

I changed my life overnight. Kind of.

Let’s be real. Happiness is a practice, not a final destination. Some days are not easy. Sometimes the hard days can turn in to hard weeks. Over time some things have become easier but some things I have to actively reevaluate every day. I’ve decided that it’s easier to be broken and miserable; just lay down and give up. If I am being honest, getting up is the hardest part. It’s much harder to do something different and even more, challenging yourself to accept responsibility that you alone have created your misery. I had to come to terms with the fact that no one else could save me, no matter how much someone loves me, I had to save myself! I had to have courage in a way that I never felt before. I have found myself in this journey and it’s changed my life.

I have the pictures that I revisit from time to time of my children putting on the puppet show. They’re not fantastic pictures but I love these so much! It serves as a reminder of my choice to be happy. It reminds me of my lowest point and how hard I fought and continue to fight. I am not the same woman that was broken in the corner, but I remember her well and I know she is proud of me.

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My Voice

***Reader Discretion***

This is the hardest thing I have ever written and because of that, it is the hardest thing for me to share and subsequently feel it’s important to share. This is dedicated to all the people who have suffered in silence or not in silence as the result of being a victim of a sexual assault. Some readers may find this post distressing due to the content. Reader discretion is advised.

———————————————-

I lay with my eyes closed, tears sliding down my cheek, waiting for it to be over. I hear the sounds of something hitting the truck, “What the hell is she doing?!” he shouted. “Your friend is throwing rocks at my truck!! Stop crying, you’re fine!!” I clumsily tried to pull myself together.

The passenger door opened abruptly, “Get off my friend!” she growled. She turned and looked at me, “We need to leave now!” I quickly gathered my things and walked to the passenger seat of her car, she yelled something at him and within minutes we were driving quickly down the mountain road.

I sat in silence.

“Are you ok?” She asked.

“I’m fine…”

“No, really, are you ok?” She persisted.

I silently relived the events in my mind. What just happened!? I just wanted him to kiss me. We had been flirting all night. I convinced my friend to drive up to the mountains with him and his friend because I legitimately wanted to sit by a campfire with a cute guy. There wasn’t a campfire. Within 20 minutes I was separated from my friend and in his truck making out. That’s what I wanted, right? I know I pushed his hand away several times when he tried to unbutton my pants. He didn’t force me, did he? Should I have fought harder? I liked kissing him, but I know I said no more times than I could remember.

“I really didn’t want to come up here, you just don’t go off with guys you don’t know…” She continued.

“I know…I’m sorry…”

I just wanted to have fun. He was really nice. A perfect gentleman. He even gave me a jacket to wear because I was cold. I wanted to go with them, right? I couldn’t say anything, it was my choice to go. I had talked my best friend in to going! I had done everything that my parents had told me not to do. But I made the choice. The thoughts reeled through my mind of the conversation that every girl has in health class, “if you say no and they don’t stop, that’s rape.” I had said no a lot, right?! I liked kissing him, was it just expected that I go further?  I remember vividly the moment when I decided to just close my eyes and wait for it to be over; the realization that I was trapped and saying ‘no’ was of no value. Was I just raped??

I told my friend half-truths. I told her we had sex. I told her I wasn’t sure how it led to that. I told her that I hadn’t planned to lose my virginity that way, but it just happened. When we got to my house, she parked and turned to me, “I was really scared for you. I didn’t know where you were! His friend wouldn’t help me find you guys until I told him that I would kick his ass if he didn’t! I was really, really scared. Are you ok?”

“I’m fine…really…I’m fine.”

The next morning I woke up in my parents’ home. I had moved home for the summer but I was scheduled to move back to my seasonal job within a few weeks. I couldn’t face my Mom.  Somehow she would know and I would not be able to hide it. Mom’s know everything. I climbed in to the shower, turned on the water, and just sat on the floor of the tub. I stared at the water swirling down in to the drain and waited to hear her leave for work. I called a friend and within the hour had a place to go.

I called my Mom and told her a place had opened up and I was leaving that afternoon. She sat in silence, I could hear the irritation in her breathing. I knew she wouldn’t like this, but I just couldn’t stay. “Well, are you at least going to stick around so we can spend some time before you go? We never see you!” She was even more irritated with my answer, to which I responded as snotty as possible, “I’m an adult Mom, I can leave if I want.”  I packed up my bags and quickly escaped.

My drive was long and I did it in complete silence. I couldn’t cry because I still didn’t know what happened. The reality of the situation set in; I was not a sexually active woman and I was not on any form of birth control. I felt certain that he didn’t use a condom. How could I, an 18 year-old, go to a doctor without my parents’ knowing? I had never even made a doctor’s appointment on my own. I drove while nervously biting on my lips until they began to crack and bleed. By the end of the drive I had decided that I needed to go to Planned Parenthood.

I sat on the table in the exam room.

“So you had unprotected sex?”  the nurse asked.

“Yes.” I couldn’t stop the tears.

She immediately sat down her papers and wrapped her arms around my shoulders, while I cried. I cried uncontrollably. I apologized over and over again for my emotions. She just held my hand. She calmly asked more questions. I lied. I told that I was just tired. I told her that I had a lot of stress in my life. I lied. I made up a story about a non-existent boyfriend, whom I had broke up with and was, therefore, heartbroken. I lied. I knew that she knew and I still lied. I was embarrassed. I was an smart young woman and I had made some very stupid decisions and I never, ever wanted anyone to know.  She gave me the morning after pill and birth control, along with some pamphlets for a rape helpline and a sexual assault support group. And I silently carried on with my life.

I never said anything. The thought was there, a daily reminder that I had somehow failed in some way. I silently decided that I was not worthy for the guy that I desired. I silently hid in my friends’ condo and clung to my small circle of friends. I silently shut my family out. I silently hid in a silent relationship with a man who didn’t make me talk much about real things. I silently decided that I wasn’t going to be the girl who got raped.

Time moved on, as time does. I really thought I held it all together by not acknowledging it. My only trusted friend was my notebook. I wrote notebooks full of thoughts, stories, and poems; I’m certain it saved me. My notebook knew my secrets and I felt safe from judgement. Looking back I can clearly see that many of my choices were driven by the shame that I carried, but writing was a healthy choice.

There have been a few times since then in which I was forced to acknowledge the guilt, fear, shame, and every thing in between – including some emotions that I still don’t have words for. I recognize now that it will always be a part of me and part of my story. I learned that the best way for me to heal was to speak. As hard as it was/is, speak! Tell someone! Tell anyone! Join a support group – tell a stranger! I HAD to give myself a voice because there was a time where my voice didn’t matter. The fear of having a person look at me as a victim, as weak, as less than, as seeking attention, as responsible or “asking for it” – it prevented me from saying something for far too long. I agonized for years, holding this story so close that it damaged the relationships closest to me and more importantly the relationship that I had with the power of my own voice.

Every 90 seconds someone in the United States is sexually assaulted and only 15-30% of those are reported. It makes me realize that I have a lot of friends that have experienced the same feelings that I have had, that they may also still have nights when they fall asleep analyzing the situation and wondering, ‘Did that really happen to me?’ or ‘I should have fought harder.’ Mocking yourself in silence about things that you shouldn’t be afraid of; a car driving by, a shadow in the hall, a real relationship. Afraid to be broken. Afraid to have to talk about it. Afraid to be labeled. Please know, you are not alone.

(Photo credit: Blackbird Boulevard Photography)

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From the Fat Lady on the Next Row

Dear Trisha,

My name is Casey and believe it or not, we unofficially met today. I went to the gym to do my cardio followed by a sit in the steam room. I don’t like wearing the same clothes after this regimen, so I retreated to the empty locker room to change. I always pick the last row and furthest corner back. You and your friend entered the locker room just after me and proceeded to check yourselves in the mirror, giggling and gossiping. The gossip was pretty juicy in nature, something about one of the good-looking trainers. When I opened my locker, your friend wondered out loud who else was in there. I continued on with my business and you glanced around the corner and let her know, “its just some fat lady in the next row.” Your friend laughed, called you by your name and you continued, “Please don’t ever let me get fat.”

This is not some letter to let you know that bullying is alive and well, beyond adolescence. All you have to do is turn on the news or login to social media to see that it is. This is not a letter calling you out, letting you know that while I may be heavier than you, I can lose weight and your comments make you ugly. Years ago this is the sort of thing that would have left me crying and afraid to step foot in the gym again; which is the unfortunate case for millions of people every day. This letter isn’t about that. This is, however, a little bit about me, the fat lady on the next row.

I was called chubby my first time when I was 9 years old and I never saw myself in any other light until over two decades later. I remember when my family moved to Utah. I was 12 years old and felt very out of place among the sea of skinny tall blondes, with my brown frizzy hair and round face. I never felt like I fit in. When I was 13, I was called fat for the first time by a popular blonde cheerleader. She bumped into me in the hall and she looked back and stated, “Oh, it’s just a fat girl,” to her friends as they all turned and laughed. I became withdrawn and I cried a lot at night. I just didn’t fit in. I danced because it was the only place that I didn’t feel judged for anything but my ability, but I even had the horrible experience of hearing girls on my team talk about myself and others and our lack of fitting the mold. Halfway through my junior year in high school, I learned about this medication that induced vomiting and I remember feeling like my life would turn around. It didn’t. I’ve never been skinny, but I had no idea that I wasn’t fat. In my mind I felt if I didn’t purge, I would be super fat and I definitely didn’t want that!

After high school I discovered the wonder drug: Fen Phen. I lost weight, but I also stopped eating. Even after I stopped taking the drugs, I made it a goal to see how long I could go without eating. Then I got sick. But I still wasn’t skinny. When that didn’t seem like a viable option anymore, I turned to laxatives. Lots of laxatives. I could write an entire novel on my experience with laxatives and the horrible side effects that I willingly put upon my body. Guess what? I still wasn’t skinny!

When I turned 23, I discovered exercise outside of the extracurricular activities that I had chosen in high school. I discovered how to eat healthy on a college budget. I found happiness in life…but I still wasn’t skinny. However, it is my first recollection of feeling cute.

When I was 25, I had my first child. My weight yo-yoed from that time until about the age of 33. I tipped the scale at a whopping 227 pounds on more than one occasion. I had lost motivation for myself and for life – I had just lost myself. One day when getting out of the shower, I glanced in the mirror and it just hit me. It all hit me. My entire life, I had tied my ability to be happy with my weight. “I was fat, so how could I be happy?” As I stared at my body, seeing the pure damage that I had put myself through physically and emotionally, I refused to hate myself anymore and I’ve never looked back – except in the, “man, I’m rocking it!” kind of way.

So Trisha, I need you to know that there is nothing that you could say about me that I haven’t said to myself. In fact, the millions of unkind words that I had said to myself over the years prevented me from seeing myself as anything but “the fat girl on the next row.” Thank you for reminding me how far I’ve come!

I am that person who despite having chronic pain and a million other reasons, gets up and vows to do something active each day. I am that person who has ran 2 half-marathons, does challenging hikes, goes to aerial arts classes knowing that I am getting stronger every day and that is going to lead to awesome things, and I am that person who can’t wait for the next adventure. I love life. I love myself. I am not fat. I threw away all of my scales because my happiness isn’t dictated by numbers and my physical health is gauged on how I feel. If the results of my chosen lifestyle lead to a rockin’ body, that’s awesome! Just between you and I, I am pretty certain that it will! So maybe after reading this letter, next time when you see me in the gym you can say, “Hey, there’s that badass from the locker room!”

I wish you all the kindness in the world, Trisha! I hope that the trainer notices you and that you have a dozen beautiful babies. Most of all, I hope you remember to always speak kindly to yourself so that you can speak kindly to and about others.

Much Love,

Casey

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Lupus Awareness Month: 12 Things About Living With Lupus

lupus2

In honor of Lupus Awareness Month, I wish to share my story as well as some information of what it is like for me living with Lupus. I was diagnosed with Lupus in March 2011, after years of weird symptoms and at least 6 different doctors and several misdiagnosis I was finally diagnosed; Systemic Lupus Erythematosus (SLE) or Lupus. It took over a year to feel in control of my health and more importantly, feel like myself. I was lucky; I was able to maintain a somewhat healthy status for several years. Then, BAM! I was recently swept off of my feet by a massive flare up. I have an amazing support system, but in all honesty these last several months have been equally emotionally and physically challenging for me. People have asked a lot of questions. Lupus is something that people just don’t understand or have never heard of. 


The two questions that I am asked frequently; “What is lupus?” and “What are the symptoms?” I frequently refer people to www.lupus.org; it’s a wonderful site full of great information. But to answer some questions:


What is Lupus?

“Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body. Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).” (http://www.lupus.org/answers/entry/what-is-lupus)

What are the symptoms?

While these do not cover all the symptoms, these are some of the more typical symptoms. Also, not everyone experiences the same symptoms. I have bolded the ones that I have experienced. 

 

  • Joint pain and stiffness, with or without swelling
  • Muscle aches, pains, or weakness
  • Fever with no known cause
  • Feeling very tired
  • Butterfly-shaped rash across the nose and cheeks
  • Other skin rashes
  • Unusual weight loss or weight gain
  • Anemia (uh-NEE-me-uh) (too few red blood cells)
  • Trouble thinking, memory problems, confusion
  • Kidney problems with no known cause
  • Chest pain when taking a deep breath
  • Sun or light sensitivity
  • Hair loss
  • Purple or pale fingers or toes from cold or stress

 

Other Symptoms include:

  • Blood clots
  • Seizures
  • Sores in the mouth or nose (usually painless)
  • Dizzy spells
  • Depression
  • Strokes
  • Dry or irritated eyes

What I want people to know about Lupus and what it’s like for me, living with Lupus:

1. There is no cure. There are treatments to manage the symptoms. There’s a wide variety of ways to approach the symptoms, but there is no cure. I read recently (although I don’t remember where) that Lupus patients take an average of 7 medications to manage their symptoms and/or side effects of Lupus. I am far below the average, however as someone who does not like prescription medications – it’s feels like a lot. 

2. There are no known causes. Despite many theories, there is no scientifically proven cause. I have heard numerous (and some mildly entertaining) theories; however in the end, it doesn’t change that I have it. Don’t worry it’s not contagious. 

3. Flare-ups SUCK.  Lupus is a series of highs and lows. The lows are flare-ups. This is when you have a variety of symptoms that take over your body. There is no prediction for how long it will last and/or how long you will feel OK in between. It interrupts your life. I’ve had flare-ups that have lasted about a week and up to 6+ weeks. My most recent lasted 5 weeks, I felt pretty good for a couple of weeks and now I’m about a week in to another. These flare-ups are always ill-timed and ill planned. 

4. It hurts.  I feel as though I have pretty high threshold for pain, however most days I have pain somewhere. My hands, legs, feet and hips frequently hurt. During a flare up, sometimes the pain feels beyond uncomfortable. Lupus doesn’t stop at the joints though; depending on what is being affected there are other pains to be had. 

5. It interrupts your life. Yes, I already said that but it is worth noting more than once. I am a Mom. I don’t stop being a Mom because I have a flare up. However, my 11 year-old has made dinner for us on more than one occasion and I have missed school activities because I had to take a nap at 11 and another at 2. There have been many nights when I would love to go out with friends or spend quality time with my husband but I am just too tired or not feeling well. On top of this, I feel like my calendar is packed with doctor appointments.

6. Lupus makes me blush. Quite literally. Rosy cheeks, commonly known as a butterfly rash. I LOVE BUTTERFLIES. Not this one though. Thank goodness for makeup! On the flip side, I am also anemic, which makes me pale. How’s that for balance? 

7. Sometimes I lie about how I am feeling.  My kids have seen me at my worst, there’s no need to concern them more than necessary. Also, being asked how I am feeling constantly can feel a bit daunting and it’s just not who I am. In my mind I try to keep the image that I am healthy, happy, and free. I will try to project this as much as possible. However, there are moments when I just feel sad and emotionally exhausted, even depressed. This isn’t who I am and it’s much easier to say, “I’m fine.”  

8. There are things that I wish people would just not say. Any statement starting with, “if you would just try….I know you would feel better.” I completely understand that it comes from a place of love and desire to help but it can be borderline insulting, especially if you don’t have Lupus. I’ve surrounded myself with the best professionals that I can find to help me through this; trust me, I am trying to get better. I do not subscribe to conspiracy theories that my doctor is trying to keep me sick. I have met just as many inadequately trained doctors as I have natural healers and vise versa. I still love everyone who has offered a recommendation of some sort; maybe ask what I am doing rather than assuming that there is something that I am not doing. 

9. I’ve learned to trust my instincts. I have been to doctors who have told me that I am “just lazy and need to exercise more” or told that I look healthy, so everything must be fine. It creates a lot of self-doubt. More recently I saw a doctor who insisted that because I haven’t had a flare in such a long time, there is no way I actually ever had Lupus. I had to be suffering from depression…and possibly allergies. Really bad allergies. He was right I was depressed, being sick is depressing. Knowing that you are sick and being told you’re not, is even more depressing. The thing about Lupus is that it mimics so many other things; it is one of the ten most frequently misdiagnosed diseases. Furthermore, there isn’t just one test that is given to reach the diagnosis.

10. I’m not ignoring you. Lupus is far more draining than any other life challenges that I have faced. Sometimes I have to be in my own head and re-focus to press forward. Sometimes I HAVE to nap, sometimes it’s more than one nap that I HAVE to have. Sometimes I have to pull myself in to my little world and focus on what is truly important (don’t we all?). If I am not answering my door or taking your phone calls/texts/snapchats/chats/mail/morse code or reaching out to you, it is simply because all I have to offer that day, I am already giving. Honoring my wellness is most important to me. 

11. I really am THAT tired. The level of exhaustion that I have felt, I cannot adequately describe. This is coming from someone who frequently ran on 2-4 hours of sleep during my much crazier younger-years. As well as 4-6 hours of sleep during the years in which I worked, went to school, and balanced mommy duties. None of that compares to how tired I am. I am really THAT tired. 

12. Lupus is not who I am. Some days are harder than others to find my happiness. However I have fought diligently to become the person I am and to find my happiness. I will not sacrifice that for anything. I have many goals that I will still achieve (except maybe that triathlon this year – maybe next year) and a very full life that I will live! I will still enjoy my hobbies, my friends and my amazing family.

Despite dealing with this, I feel loved and that helps me feel strong. There aren’t enough words to thank my support system. My incredible little family, who constantly remind me to never give up and willingly help me out. My best friend, who has listened to me be the biggest Debbie Downer but still loves me and still treats me as the fun person that I truly am. My parents and siblings for the prayers, phone calls and texts. There is also a small army of people who help me in ways that they don’t even know. I am blessed. 

 

You’re Not Fun

“You’re not fun..” you yell. It penetrates too deep. Too tired to even fight the words. I’m not fun. I’m really not. Not right now.

You see, less than a week ago, I got the diagnosis that I have been dreading, “You’re having a significant Lupus flareup…” I almost went in to shock. I mean, I kind of knew but I kind of was in denial. It’s been over 3 years since my last one. I really felt disease free. Perhaps I took it for granted. Perhaps I didn’t pay enough attention to the monster that lay patiently inside me.

So there it is. To say I don’t feel well is beyond correct. To say that I didn’t lie in bed for almost 2 fell days with a tear-stained face trying to give myself reassurance, would be a lie. I was alone. The only 2 people that I would want by me in other countries. One of those people, I don’t think he even knows what Lupus is or maybe he doesn’t care. I haven’t decided yet.

I haven’t felt like myself for weeks, maybe longer. Frustrated with my body. The thing is, I really am fun! Despite dealing with children who are in a constant state of bickering and the arguing…oy vey! The arguing! Everything becomes an argument. Thats my full-time job. Pretty much the only time I don’t have to deal with the arguing is when they are at school or asleep. I do a good portion of the refereeing on my own. It’s like Chinese water torture…drip, drip, drip….until I can’t handle it anymore. The goal every day is to see if I can maintain patience the entire day.

But, yes, I really am fun! Just not right now. Not in the midst of discovering that I haven’t successfully evaded Lupus. I don’t think it’s fair. I am angry. I try harder than most to be healthy and yet, I have no choice. I don’t get to have control over my body. It just decides when to be sick, despite the inconvenience of it all. I get to wake up in the morning, swollen from meds, sore, and feeling far from amazing. I am depressed. No one understands. No one. So please, tell me how I am not fun as I sit here, already feeling completely unlike myself. It just feeds right in to my feelings of inadequacy.

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