It's no secret that the community of people who suffer from chronic illness and disability is in an uproar due to the rash and erroneous statements made by Dr. Phil on Tuesday, March 12. In this episode, Dr. Phil claimed that "100 out of 100 relationships that involve care-giving fail. You can be a caregiver or a lover but you can't be both." I've never seen a more beautiful response than from the #100outof100 that's trending on Facebook and Instagram, and as a young, single, chronically ill woman myself, it may seem that I'm not qualified to have any opinion on this topic at all. But, I'd like to offer a fresh perspective to the community and to overall society. Everyone may be appalled by Dr. Phil's statement, but how often does society and communities all over the U.S. actually treat the chronically ill and disabled this way? Thank you, Dr. Phil, for saying out loud what most people think, but would never make audible. Your statement is currently bringing to light the attitudes of many and states that this is a social and cultural mindset that needs to change. Well, this is my perspective, and if you read all the way to the end, you'll find that I may be more qualified to discuss this topic than some might think.
My parents were married in the year 1980, and my mother was diagnosed with chronic Lyme disease in the year 2013. It took years for my mother to receive a diagnosis, which means that there were 33 years of unresolved health problems and 39 years total of disability and struggle.
On my parent's wedding day, my mother was eminently sick, and that was merely a taste of the next 39 years for them. I don't ever remember a time when my mother wasn't sick. My mother is the best mother I could have ever been sent to because despite chronic weakness, fatigue, and unexplained neurological symptoms, she successfully raised six kids in a happy and healthy home who are now thriving adults in society. It wasn't until I came along that symptoms became less tolerable and more abundant with time. As a teenager, I remember my mother often being bedridden throughout the winter months and hospitalized frequently. It didn't make it any easier that my parents had me, who seemed to always be sick with strange and unexplained symptoms, and the frequent doctors appointments for both of us almost never left us with any answers or hope to someday receive answers.
It wasn't until I was a junior in high school that my mom went down for the long run. Her pain levels were excruciating, she would often suffer from spontaneous seizures due to the high levels of physical pain, and she experienced pain so deep and severe that I often wondered what happened to my mom because she wasn't the same person when she was this ill. She was bedridden for years, she lost her ability to walk and was in a wheelchair for awhile, and again... there were no doctors that had any answers to give us other than that there is no illness with all of her symptoms.
Right when life reached it's peak of pain and discouragement, right when most people would leave and surrender to it all, right in the middle of no improvement, and right when a large majority of people would leave... my dad chose to stay. There wasn't a life to be had. There wasn't a possibility of going to work, or church, or anything else that an average man would do because when mom went down, my dad took his rightful position as husband AND full time caretaker. The position he promised he would take the day that he married her.
I've watched my dad care for and love my mother through this awful disease for years, and he isn't planning on stopping anytime soon. I've watched him feed her, push her wheelchair, and peel her off the floor after she's passed out or after a seizure. I've watched him drive when she lost her ability to. I've watched him take over the cooking and cleaning when she lost her strength to do it herself. I've watched him do what any real man would do when the love of his life is put in a situation like this. Because why would you trust a stranger that you pay for to take care of the person that you love and cherish more than anything in the entire world?
True love has absolutely nothing to do with physical ability or lack there of. True love has everything to do with two hearts and souls that would give and sacrifice ANYTHING for the well being of the other person. And if both people in the relationship have that mindset, then both people are thoroughly taken care of. My mother has always been a help-meet to my father. And when she was able, she was always by his side, helping and supporting him in all of his endeavors. My parents set out to be a team from the very beginning, so when they were brought to a point where they had to walk through the fire, they walked through it together without being burned alive.
Not only did my father have the task of taking care of a sick wife, but he also is frequently met with the task of taking care of a sick daughter as well. My small family of three pulls together in our house, and through sweat and tears, we take care of each other, no matter how difficult it gets. Often through the fire of chronic illness, I've so frequently been shut down by others, which is why it's crucial to have a family that is your full-time caretaker.
We live in a society where the breakdown of the family is dominating and the definition of love is becoming increasingly shallow. As a young single person, I watch many healthy young people searching for someone who can be their eternal companion, and basing their decision on how much fun they can have with a person, and how pretty looking they can appear to be together. Why would you need to take care of the person you love when you have doctors, therapists, physiologists, bishops, and pastors doing it for you? Wouldn't it be easier to hire somebody who is a qualified "expert" because they learned about it in a textbook once when they were in college?
The answer is no because true love has nothing to do with how good you can look on Facebook, and often the experiences that cultivate the greatest love are not shared on social media. Often the experiences that cultivate the most love are dark, scary, and require sacrifice. Cultivation of love is often brought on by those experiences that open your eyes to how much you would miss that person if you lost them.
I'll never forget the comments I've received from people towards the men I've dated about how wonderful a man he must be because he's willing to be with "someone like me." I often wonder if the person that told me that "it makes sense why no one would want to be with me" is right in some ways. And I often think of the many men that frustratingly have asked me what it would take to be with me because they don't think they could do it.
What all these people are forgetting is that love is patient and kind. Love is not skin deep but is something that penetrates into the heart and soul of two people who would give anything to be together. What happens when that "perfect" husband or wife becomes paraplegic, or chronically ill? Has our society come so far as to say they won't love another human soul unless there's a guarantee that everything will stay easy and comfortable all the time? Because if we've come that far, then society is seriously disintegrating before our eyes. No wonder there are so many incredible disabled women I know that feel like they're destined to be alone.
As a chronically ill single girl, I know my worth. I know my mind and heart have more to give than a lot of people who are physically able and strong! And I know that there are thousands and millions of chronically ill people out there who are worthy of love because the love that they have to give is the kind of love that lasts into the eternities.
When something is broken, you fix it. You don't throw it away. When you choose to love someone who is broken, the brokenness heals. Because doctors and "experts" cannot heal you. But love can. It is possible to love at maximum capacity while coping with disability and illness. May we all choose to see that in whomever it is that we come to love someday.
I sense extreme pressure that builds up in my chest and makes my nerves tingle from my heart all the way to the tips of my fingers. Pressure that makes me fear the future and gives me a severe distaste for my present. Pressure that brings tears to my eyes when I least expect it and leaves me looking at myself in the mirror wondering who that girl is.
I'm not completely sure where this pressure comes from, but I have a slight notion that it originates from past traumas. Memories of insufferable pain from Lyme disease for long nights. Recollection of people that I love making promises they never intended to keep. Thoughts of being hurt by the harsh words and actions of people who don't even seem to understand how much effect you can have on another's human heart. This odd awareness for past experiences flashes through my mind when I least expect it, and leaves me feeling like something inside me is crawling up my spine. I can't stand it, and for once I'd like to just be me and not have to worry about being crushed again by the insensitive human temperament that so many seem to possess.
I want my heart back, and I want to feel comfortable in my own skin again around other people.
When I'm occupying my own space, I get to experience a sense of acceptance of the girl that screams to be free. In my sanctuary, I have the privilege of being that girl that doesn't eat sugar and experiences a thrill from eating healthy food. I'm that girl that can sense things that others can't and is allowed to be highly sensitive to smells, tastes, sights, and the little beauties that are all around us, and it's not crazy, it's insightful. I'm that girl that sings her favorite song as she's walking down the street and wears maxi-dresses for no special occasion, just because she can. I'm the girl that jumps up and down when she gets excited over seemingly insignificant things, and I'm that girl that obsesses over to-do lists and loves schedules, but also loves feeling free as a bird! I'm the girl that never does anything half baked, and it doesn't matter if everyone else executes everything in their lives with half the effort, because she can be happy living in her full and vitalized life. I'm the girl that lavishes my entire heart in her endeavors and thoughtfully verifies that the beautiful living creatures that she comes in contact with can experience the intense Divine love that she can bestow.
I'm also that girl who can be smiling one minute with gratitude that she's not in pain and crying the next because coping with trauma from illness is SO HARD. I'm that girl that can laugh at the humor in life one second and be on her knees in prayer the next praying for release from severe anxiety and depression. I'm that girl that can be on my feet and doing yoga one day, and in bed with a heating pad hardly being able to move the next, because Lyme disease sometimes breaks you. But when I experience my whole being in a safe place for myself, I don't feel completely insane for the various and rapidly changing ups and downs. When I'm safe, I can accept that I'm just a girl with a chronic illness who is trying to learn how to heal to the best that she can and sometimes she's dissatisfactory and defective at it, other times she thrives, and that's okay!
In the presence of large groups of people, everything changes and I often find my indestructible and merciless brick walls building up around my heart as a protection against the naysayers. I often can feel the lock and key as I stuff my personality in a corner for the meantime. I often feel trapped to be like everyone else, and if a little part of me comes out it could be dangerous in the hands of people who disagree or misinterpret. I often find myself performing the act of the perfectly composed woman who wasn't just in excruciating pain the night before and can be wherever it is I need to be because I'm expected to be there, even if my body cries otherwise. Concealing my thoughts, holding my tongue, not venturing too close... Because if you unexpectedly get too close to someone who bites... you're left suffering on levels that they don't understand simply because they haven't experienced their severe adversity yet. Protecting myself is chaining, exhausting, and lonely. And for that reason, I choose my safe space as often as I can.
Everything changes in the presence of people who misunderstand and misinterpret. And the unfortunate truth is that so many people throw wrath and fear at others simply because they lack the ability to reach their hearts into someone else's. So many lack the ability to be raw and honest with themselves and others about their lives. We all struggle, and if the human struggle was a shared effort where we all sustained each other, there wouldn't be so many who feel the need to live a double life.
I often wonder what it would look like if it were possible to compile all the tears from human suffering into a box, how big that box would have to be. And if people had a chance to witness how large that box was, if it would soften their hearts in a way that made them slightly more sensitive to the people around them and slightly more aware of the hearts that are crying out for help. If we knew how deep other people's waters were, would we take extra time to stop and help them so that they don't drown? And if everyone stopped and helped the people in deep water, maybe all the water as a whole would be lessened to the point where we could all patiently wade through less troubled waters together. Maybe if we all decided to be a little more real, and a little more honest... then maybe those who suffer wouldn't feel the need to live a double life because then they would know that they weren't along and that there were strong hands waiting to lift their aching hearts.
God doesn't expect us to live out our lives in cold hard shells so as to not let other's notice our pains. God desires us to love and lift the hands that hang down. God wishes us to let love penetrate so deep that we can all feel His Divine love through each other. I hate the pressure I feel to live a double life as a chronic illness warrior (and I know I'm not the only one), and I've found that I'm more effective at bringing light into other's lives when I'm simply striving to be my best self. Maybe all of us could come to that realization in a way that could change the world.
There is one truth that for the longest time I never believed for myself. But now I believe it, and I want everyone who suffers on levels such as this to know:
HEALING IS POSSIBLE. HEALING CAME FOR ME, AND IT WILL COME FOR YOU TO!
Healing is not something that occurs in one swift motion. Healing does not come in an instant, and healing isn't an easy process. Healing is a cleansing process. A cleansing process of one's mind, heart, and soul. Healing is a choice. We are NOT a result of what happens to us in our lives. We are a result of how we REACT to what happens to us. There are things that will come that are completely out of our control, but how we choose to react to those things will determine our destiny. If we choose wisely, we can experience healing along the road that at times will seem relentlessly long.
And here's the good news: WE ARE NOT ALONE ON OUR PATH TOWARDS HEALING! Isn't that a glorious message!? We have a loving and merciful God who is there for us every step of the way. We have a Savior who knows EXACTLY what we are going through because he suffered all of these pains we feel long before we felt them. And we have angels that we cannot see who are there to love and support us and they are fighting our battles with us. You see, we are never truly alone on our painful journeys. That was something I had to learn before I was able to get up, overcome the initial shock, and move forward in faith.
Healing doesn't come through choosing to be the victim in any certain circumstance, and for me I had to push past the agony that was taking place in my mind and heart, and make specific decisions and take action towards healing. Small choices I made back then made a massive impact on the state of my heart as time passed. These are action steps that every single one of us can make. And no, making these decisions doesn't make the heart-stopping pain hurt less, and it doesn't induce instant healing, but it teaches and heals one step, one second, one minute, and one day at a time.
These are the things I had to experience in order to reach healing:
1. I had to decide right away that I wasn't going to let this destroy me. Throughout the course of events I resolved to be strong even if I felt like the weakest person on the face of the earth. For so long I felt like a little girl that couldn't control her feelings or emotions. I felt insane and I figured that my sanity was out of my control at the time. To a point it was... there were things I couldn't control. I couldn't control the deep ache that settled in my chest for weeks. I couldn't control my inability to sleep, or my lack of appetite due to the nausea that seemed to follow me everywhere. I couldn't control the horrific nightmares I had when I did sleep, and I couldn't control feeling overwhelmingly heavy all the time, almost as if an elephant was constantly sitting on me.
So, I took hold of the things I could control. I controlled how often I fell on my knees and talked with my Heavenly Father. I controlled opening up God's word and reading to find peace and wisdom. I controlled the fact that I wouldn't allow myself to be left alone at any given time for the first little while. I controlled who I spoke to and who I did not. I controlled which texts and phone calls I answered and which ones I did not. I was constantly seeking for peace. Hidden in all of these little insignificant choices was my deep desire to not let this tragedy destroy me. I wanted so desperately to be strong, and I learned along the way that all of us are blessed with that strength inside of us. God is more powerful than pain, and He can bless us with extra strength if we so choose to develop it.
2. I decided to find myself by losing myself in the service of others. One wise teacher, mentor, and friend once told me that "you find yourself by losing yourself in the service of others." I figured in this case I didn't have anything else to lose so I might as well distract myself at least. I expressed at one point my deep and painful feelings to this friend who offered me the opportunity to come volunteer as his TA for a semester at a local high school. I'd be working with high school seniors, and for whatever reason I felt a desperate need to except his offer.
Without going into great detail about that glorious experience, I have to admit that it was a MASSIVE blessing at this time in my life to get to know those high school seniors. Being greeted with "Good morning Miss Dalton!" every morning brought such joy to my soul for a time, and my heart felt full with love for those bright and beautiful teenagers that I was working with. Serving others played a tremendous role in my healing process, and it can in yours too. It's all a part of opening up your heart again to be able to love. Love is the greatest healing power in the entire world, and when I let a small piece of my heart love again, it meant the beginning of that small piece being mended and restored little by little.
3. I had to purge my past and forgive. Forgiveness was one of my more difficult tasks on my path to healing. I wanted to believe that I had forgiven him from the beginning. And I had reached forgiveness to a point, but I hadn't let it all go. I spent so much time being angry at him for destroying me. I spent so much time agonizing and reliving those moments of horror. I spent so much time feeling terrified of the people I came in contact or with, or afraid that maybe I didn't have a future past this experience. Honestly, I had to experience those difficult feelings in order to truly forgive and surrender my past in a way that doesn't let it define my future. Along the way I learned some things about forgiveness.
First, forgiveness does not mean putting yourself in a place where your heart keeps breaking. It doesn't mean reinserting yourself into someones life who has hurt you tremendously. Sometimes we have to love and forgive people from a distance, and that's okay. Second, forgiveness is not the same as excusing. We do not have to excuse someone's wrongdoing in order to forgive them. In fact, the more we allow ourselves to experience and recognize the damage that has been done, the greater our capacity to forgive, change, and move on. And third, forgiveness creates a safe space to allow God to heal your heart. Restitution for me came from my Savior, and it came in the form of healing and restoration of my heart and mind. Once I achieved forgiveness with the help of the Savior, I was able to feel free again which opened my heart up to be healed and purge the negative emotions I had towards the one who had wronged me. We all have that power to forgive. And if we don't have that power in the beginning, pray for that power. God will bless you with the innate power to forgive and move on.
4. I had to give all of my pain to my Savior. I remember a very specific time in the course of events where I learned this crucial life lesson. I had just moved with my parents, I was in a new place, and I had met some new people that I was terrified to open up to or think about to much. I was sitting on the edge of my bed one night in horrendous emotional pain. I felt panicky and weak and my heart hurt tremendously. I felt confused and angry and I sobbed uncontrollably for the loss of my peace of mind. It had been months... I should be over it... I shouldn't be hurting so much. In that moment I wondered if I would ever feel peace again.
At the time a thought came to mind that I had read about how the Savior is just waiting to heal us of our wounds and misfortunes, but in order for us to allow Him to heal our hearts, we have to ask for healing. It occurred to me at that moment that I had not yet simply asked for Him to take my pain. It seemed impossible for one moment of inquiry to heal such a wounded and broken down heart. But I had to try, and I had to muster up enough faith for healing to occur. I retreated to my knees and pleaded with the Lord to heal me. To take my pain. And I remember clearly stating, "Please... I don't want this anymore!"
At the conclusion of my prayer I felt stillness, and I felt an obvious lift in my heart. I felt anger melt into the floor, and I felt peace fill my soul as the tears flooded down my face. I knew in that moment that my prayer had been heard, and that I was currently in the process of having it be answered. My merciful Heavenly Father was going to take all my broken pieces and build them into something beautiful. I just had to excersise patience, and after that moment, my grief and pain in the days to come was less intense, less excruciating, and more bearable. It was nothing short of a miracle and I know it's because when we lay our burdens at our Savior's feet, He heals us.
5. I had to recognize that I still had worth. I was broken, wounded, damaged... I've used those words to describe myself so many times. I knew that to most men I was "damaged goods," and in my mind I didn't disagree, and I didn't believe that I had anything to give or offer anymore. But in order to experience healing, I had to learn differently.
Nobody is ever just eternally broken or damaged unless they choose to be that way. I have so much worth, and so much to give in my interactions with others. I may be broken, and I may have some scars, but my brokenness has transformed me into something beautiful. It's ironic because in the midst of it all, in the past year my capacity to love others has grown. I know now that someday when I discover the man who I was meant to be with, my love for him won't be any less because of the love that I had for the man who hurt me.
You're not broken! You're not damaged! You're not worthless! And in the sight of God, you have infinite power and ability to love and be loved, and continue on your path towards success and happiness. That was something I wish I would have understood faster, because it's so crucial when we are healing to know who we are, and by knowing who we are, we can take back our power that God blesses us with to prosper and live life to the fullest.
6. I had to be thankful. Gratitude is essential for healing. Either I was cursed because I lost who I thought was the love of my life. Or I was blessed because I was saved from being put in a situation that would have destroyed me so much more if it would have gone on longer. I've come to know that I was gloriously blessed, and I thank my Heavenly Father every day for saving me without me even knowing that I needed to be saved. When we express gratitude, we open our hearts to healing and happiness and let go of things that we no longer need to hold on to. It's not easy to find gratitude after such horrific experiences, but it's possible to find it. We simply start by seeking for the desire to be thankful. After that, it will come if we exercise faith.
6. I have to keep striving. Stop crying. Get out of bed. Put one foot in front of the other. And continue on in faith doing the things you know you should be doing, and the rest will fall into place. You don't get anywhere in life if you spend it crying in a bed or a chair. You experience peace and healing by living and moving forward. And I will be the first to admit that it is not always easy. There will be days for a long, long time where you grieve and cry. There will be days where you will feel like you cannot continue. There will be days where all of your feelings come to the surface in the form of tears. And there will be days you just want to scream because you cannot avoid the prickly parts of healing from trauma.
But I promise you that there will also be days where you find unexpected smiles creeping across your lips. There will be days when you'll meet new people that you're meant to love and be loved by. There will be days when you find yourself laughing again. There will be days when you'll experience joy in the moment, peace for the past, and hope for the future. These moments are what make the painful moments completely worth it.
Healing is possible. It doesn't come instantly but IT DOES COME. There are still days that I hurt and struggle. There are still days that I have to relive the past. There are still days that I experience longing and hopelessness, but they get less and less the more I strive for healing. It's important to remember that you are always loved. And there is ALWAYS help and happiness ahead.
Note from the Writer: This article is in no way, shape, or form intended to be used as a way to "man bash" or condemn my ex-fiance. In the past year of my life, I have felt complete forgiveness towards him and the decisions that he made at that point in his life. I truly hope the best for him and wish him well. I share my story today in hopes to reach a point of understanding and compassion for everyone who is going through, or who has gone through something similar. I know I am not the first woman in the world to be betrayed, therefore I feel a deep connection to all of my fellow sisters who have been hurt. This is to all of you who feel dreadfully alone... You are not. You are understood. You are loved. Heaven is watching out for you and God is aware of your tears. There is hope and happiness ahead.
I have always been a very religious person. Religion has always been the core and center of my life and actions, and I grew up being taught true principles of the institution of marriage and family. I was always taught God’s purposes for marriage and family, and how to seek for and live in such a way that we can be blessed with an eternal family and an eternal marriage.
“Families can be together forever.” That was my dream since I was a young girl observing my older siblings lives and watching them marry in the Temple and find joy through obedience to the doctrines and principles of the gospel. I wanted a marriage that would last forever. I wanted a love that was governed by God’s law, therefore making it the only true and pure form of love that exists in our world today. I dreamed of children and my joy being made full by raising a generation of strong and faithful children of God. These were all righteous and worthy goals and dreams. There was just one problem with this vision: I thought it would be easy.
Not only am I single as I write this article, but I’m THAT girl. That girl that spent 6 months with a ring on her finger thinking that I had finally found what I'd been looking for. The girl that was about to step foot into the journey of her "dreams coming true.” That girl that planned an entire wedding only to find a week prior that it was all a lie from the beginning. That girl that has a story to tell. That girl that believes that experiences like this MUST BE TALKED ABOUT because keeping quiet only leaves blank spaces for deeper wounds and undeniable scars. So today I’m finally talking about it. Because my hope is that someone else out there that reads this knows that she's not the first one to go through something similar, and it’s okay to hurt for a long long time. It’s okay to take time to grieve. It’s okay to feel broken for a while. And there IS HOPE FOR HEALING, even if in the moment, the healing that you seem to desperately be seeking for seems unreachable.
It’s been one year. One long year where I’ve had the opportunity to experience a cleansing process that has left me feeling like I’ve shed my old skin… And the funny thing is that at times I still feel like I’m trying to get used to my new skin. The new me. The me that was born out of indescribable and insurmountable levels of pain that I never thought I’d experience. It’s been one year since my entire world came crashing down within seconds, and my whole life changed.
I still remember that night as if it were yesterday. I was sitting on the couch with my fiancé, and everything seemed blissful. I was to be married in a week, and I loved this man very much. We had spent four years building a friendship, and almost a year cultivating a relationship of love that is patient and kind. A relationship that I thought to be above any other relationship I’d ever find. My life seemed like pure bliss, but even so, I felt a distant sting and fragility in the air that I couldn’t quite put my finger on, so I stubbornly pushed it in the back of my mind and tuned my thoughts to visions of wedded bliss.
I expressed to my fiancé the thoughts and concerns that seemed to buzz through my mind, but he assured me that all was well and that all would continue to be well. I believed him. I trusted him. And I resolved in my mind that I was just being paranoid with my own worries that were irrelevant and irrational.
I resolved to keep busy, concluding that my worries would subside. I suggested we go and run an errand for the long-anticipated wedding we’d been planning for the past six months. And for whatever reason, I stood up and reached for his phone instead of mine to inquire as to when a particular store would be closed.
That’s when I found it.
Three words on his search bar that changed my entire visage. Three words that concluded that he’d been searching for pornography possibly just hours ago. My entire demeanor must have changed in the brief second when I read those words because he inquired of me what was wrong. I asked why those words were typed into his search bar, and I looked at him with pleading eyes hoping that there was some logical explanation.
Somewhere within the course of those events, I exited out of that window on his phone, only to find multiple windows open of sick and twisted ideas of what women supposedly look like. I felt sick to my stomach.
He did a great job.
He put on a show.
He reassured me that his brother had a problem, so the only obvious answer was that his brother got a hold of his phone and it wasn’t him.
The coldest thing I’ve ever witnessed in my entire life is the lying eyes of the man I love gazing deep into the windows of my soul as multiple lies rolled from his lips. He knew it was all a lie, but for some reason, he could look at the woman that he claimed to love so dearly straight in her eyes and lie straight to her face. I never knew until that moment how unconsciously cold a single person could be.
We talked for hours… it felt like days… And somehow, he managed to semi convince me it wasn’t him.
I came home that night with a pit in my stomach. Feeling like there was darkness all around me, and for some reason, it wouldn’t leave.
I’ll never forget when the truth finally came out.
I called him on the phone and asked for reassurance again. I pleaded for the truth, but I didn’t believe it was him until it finally came out.
Those words still sting. “It’s me… I have a problem.”
At first, I thought it was some sick joke. It never occurred to me that pornography addiction would ever leak into my life or affect me in such a deep and excruciating way. I’d never thought too much about that particular aspect of people’s lives until it glared at me in the face through dark and wicked eyes. At first, I thought maybe I called the wrong number. I thought there isn’t a way in the world this could be true. I pleaded with God: “Please no… No. No. NO! Please don’t do this to me!”
The phone fell out of my hands and hung up before I had a chance to say much more. I wanted to scream. I wanted to cry. I wanted to kick and punch the wall. But in that moment, I felt paralyzed. I had a sudden frightening sensation of someone grasping at my neck as if someone or something was attempting to suffocate me to my death.
It wasn’t long before I found myself sobbing and screaming uncontrollably. Between sobs, my heart felt morbidly dysfunctional and stone cold. Little did I know it would feel like that for a very long time. I firmly called my wedding off as I sat across from the man I loved who suddenly seemed to be a stranger. I spent the night restlessly in a panic with uncontrollable tremors from my head to my toes. Everything felt dark and empty, and I couldn’t help but wonder if maybe the sun wasn’t going to come up in the morning this time. Maybe I’d be swallowed up by this suffocating darkness for the rest of my life.
The occurrence of events after that is irrelevant. Looking back, everything seemed blurry and painful for days and weeks on end. It was all over with him. But the pain wasn’t. And it wouldn’t be for a very long time.
The days passed in everyone else’s world, while my time seemed to have stopped. Time for me was now measured by all of the different kinds of agony I was feeling. It seemed to change so frequently.
At times I felt as though someone had taken a dagger and fiercely pierced it into my heart. Over time it would then slowly be yanked out and then thrust back in again.
I almost always felt on the verge of tears. And no matter how hard I tried to keep them inside me, my tries were futile.
I couldn’t eat.
I couldn’t sleep.
Everything felt lonely.
Everything reminded me of him.
Everything made me feel overwhelmingly sick to my stomach.
I felt paralyzed.
I felt traumatized.
I felt worthless.
And I felt incredibly afraid.
There were lots of times where I felt uncontrollably numb.
I’ve scrolled through Facebook countless times and have seen all of my friend’s wedding announcements and happy wedding days. When this whole journey began, I didn’t understand why the whole world seemed to be able to marry the first person they were engaged to. And I didn’t understand why everyone else deserved love and happiness, but I didn’t. I felt like I’d been robbed… Robbed of my eternal marriage and cheated out of my eternal family. And unfortunately, this feeling of being robbed was accompanied by emotional pain and suffering I never even knew existed. I didn’t even know that all of my extreme thoughts and feelings had a name. But for some reason, once I found a name for it, I felt less alone.
Dr. Jill Manning, a marriage and family therapist and Certified Clinical Partner Therapist, defines trauma as “a deeply distressing or overwhelming experience that is commonly followed by emotional and physical shock. If left unresolved or untreated, traumatic experiences can lead to short and long-term challenges.” Dr. Manning then goes on to state that “betrayal trauma occurs when someone we depend on for survival or are significantly attached to, violates our trust in a critical way.”
Considering the fact that there’s a clinical name for it, I don’t believe that betrayal trauma is a rare condition. Nor do I believe that the number of people that are affected by it are small in number. Unfortunately the world we live in is filled with evil influences, traps, and snares that lead people to make poor choices, and therefore hurt the people that they are supposed to be loving the most. I suppose that’s why it’s so important that we cling to a loving and merciful Heavenly Father and Savior, Jesus Christ who is always the way back to hope and healing, no matter how far you’ve strayed, or whether you are the victim or the perpetrator in any given situation.
For my particular situation, I was the victim. And in such cases as mine, I had to reach the point where I stopped seeing myself as a victim, and saw myself as a woman of God with innate power and ability to experience healing and wholeness once again, which is exactly what I intended on doing…
I remember participating as teenager in various Sunday school classes, youth groups, and general life courses in high school where the teacher inquired the following question: "Where will you be in five years?" or "Where will you be in ten years?"
I remember having a thorough, well thought out image in my head of what my life would look like in five or ten years. I planned to marry straight out of high school at age eighteen. I thought to myself: "I'm a socially apt, talented, smart, beautiful girl! I'll snatch a man no problem!" I always planned that I would never date anyone who treated me less than a queen, and I'd fall in love in a "whirlwind romance", just like in the romance movies. I'd earnestly mapped out my life. I'd attend college as a music major, while my husband attended for some other high end profession. I'd live in a modest home with perfectly trimmed lawn and flawless flower beds.
By the time I reached age thirty I'd be a successful business woman with her own vocal studio, and six children. My family would be the type that wears matching pajamas, and holds hands all in a row at the store. We'd wake up at 7 every morning, never a moment later! My house and children would always be clean my husband would always come home on time. He'd greet me with a kiss, and I'd always be dressed flawlessly with my hair and makeup precisely in place. My children would never complain or make bad choices and they'd all grow up to be successful, well rounded adults.
As a teenager, my vision for life didn't include imperfection and flaws. It wasn't comprised of unexpected pitfalls and adversity. It didn't encompass imperfection. It didn't encompass Lyme Disease. Lyme disease wasn't part of the plan.
When I was 18, I wanted a husband, but instead I got a diagnosis.
I graduated high school as planned. I had two scholarships to the school I would study music at. I had a boyfriend, and a circle of friends that I was content with. I was ready to set sail into my "perfect" life. Little did I know that life is what happens AFTER you make plans.
I'll never forget the night I received that phone call. I was sitting in my small room in my apartment and my mom called to inform me that she had received the test results for the thirty vials of blood I had drawn a week prior to leaving for college. The reality is that I already knew the answer to those tests. I was struggling beyond belief at that point. My fatigue was impossible to fight. My muscle and joint pain made it hard to move from class to class. The daily panic attacks that took place were debilitating, and my endometriosis symptoms left me all alone, in tears, struggling through fits of pain. I lost a lot of weight, and I just kept shedding pounds as the time went by.
Time passed. More tests results came back positive for Lyme Disease. In multiple moments of self reflection I thought: "I already struggled to watch my mom suffer from Lyme. So why me? Why now? What about my dreams? What about my 'perfect' life?"
I came home from college three months into it. I felt defeated. I felt exhausted. I felt depressed. I felt sore and achy. I felt ugly. I felt lonely. I felt unlovable. I felt like a failure. I was in tremendous amounts of pain, and I couldn't help but feel like it was my fault. I couldn't help but feel like my dreams had been burned right before my eyes. I couldn't help but feel like my vision for my life was NEVER EVER going to happen. Thoughts recklessly spun in my head on a constant basis: "What man would want a sick girl? I probably can't even have children. I'm worthless."
I spent a great deal of time in bed or asleep on the sofa. I stopped doing the things I loved. I stopped being the person I am. Through the pain and survival tactics I used, I forgot about myself. I left my identity in the distant past that I never thought I'd ever retrieve. I suffered excruciating pain flares that left me vomiting, seizing, and screaming desperately for relief. Pain medication didn't help. For a long time I felt hopelessly aware that nothing I seemed to be doing was working. The panic in my inner being was inevitable. I lost my motivation for life. I found myself in unhealthy relationships because I desperately wanted someone to love me. There were times that I couldn't walk by myself or stand up in the shower long enough. There were times I couldn't wash or blow dry my own hair, and there were times I resolved to lay in bed and hopefully die there.
At one point the day came that I found myself in a place so dark, I found that I wasn't even the same person anymore, and the person that I was I didn't like at all. Laying around feeling sorry for myself wasn't working anymore. Complaining about having to take 20+ supplements a day, and other forms of treatment wasn't working anymore. Negative relationships and my negative attitude wasn't working anymore.
Don't get me wrong. We all must face a mourning period of our diagnoses. In no way does recognizing and fighting the negative forces around me invalidate my pain, or mean that I'm not in pain. I've suffered tremendously. I still do on some days. But since that dark time, I've had to change the way I think.
I got down on my knees one day and prayed with all my heart that God would help me out of this dark place. I began studying my scriptures and striving for understanding of why I'm really suffering so much. I began to develop a habit of those two things, and in the process I began to discover myself again. Not just the me that was in my distant past, but a whole new me that just needed to find enough light to bloom where I was planted.
I have fought a good fight, and I'm still fighting. I'm a changed person, and there's still more to learn, and more in life to go through. Lyme disease doesn't have to be restraining to the point where you can't breathe. Lyme disease makes everything in life a little more difficult. In spite of that, I've found that if I look for the light and enjoy the Olympic moments that God blesses me with, it makes the fight a lot lighter and a lot more beautiful.
What I told myself back then about being worthless, ugly, unlovable, and broken were all lies. Lies that tore at me for the longest time. But what I told myself when I was a teenager about having a "perfect" life someday without flaw or hardship was also a lie. In a way, Lyme disease "ruined" my "perfect" life. And I'm incredibly grateful that it did.
I'm twenty, I'm not married, and most days I wake up way past the time I plan to. I'm going to school to become a nutritionist instead of a voice teacher. I spend a large amount of my day taking supplements and undergoing difficult treatments. A large amount of the time I don't wear makeup, and my outfits are less than flawless. I'm still in pain a lot and my energy levels aren't as high as the average person. I've discovered that falling in a true and pure form of love doesn't happen in a whirlwind, but in a slow progression that grows a little bit everyday. I've learned that sometimes life is clumsy, awkward, and uncomfortable. I've developed a skill at catching the curve balls that life continues to throw at me. That's life! And I'm grateful. I've learned that what I thought I wanted isn't exactly what I really wanted.
My perspective on life has changed a lot in past year. You don't get married because it's easy. You don't have children because it's easy. You don't fight daily battles and search for light on a constant basis because it's easy. Life isn't supposed to be easy! The idea that I do things because they're easy and will make my life "perfect" and "flawless" is ridiculous, and lacks eternal perspective.
God has blessed me with the strength and courage I need to keep pushing through, and to discover a better life for myself. He has blessed me with ability and intelligence to find ways to heal. He has blessed me with life long best friends who love and teach me and understandingly and patiently suffer with me. He has blessed me with talents, skills, and knowledge that I continue to develop. He blesses me everyday with beautiful moments that I will always cherish, because even though I'm sick, I still am blessed enough to have those moments! He has blessed me beyond words.
Lyme disease "ruined" my "perfect" life. But thankfully, Lyme gave me a beautiful, crazy, imperfect, painful, magnificent, glorious life! Life doesn't have to be perfect to be beautiful. In fact, life is beautiful because it's imperfect and because we have the opportunity to learn and progress in ways that allow us to understand our full potential. I plan to cherish the perfect moments. Laugh at the imperfect moments. Cry through the painful moments. And smile through all of the in between moments!
I haven't let go of my dreams for my future. But my dreams for the future have shifted and changed. I have Lyme disease! So what? God has plans for me, and Lyme disease isn't going to stop me from that beautifully imperfect life that He has in store for me. It won't always be easy, but in the eternal perspective of it all, it'll be worth it. Lyme disease may have "ruined" my "perfect" life, but it also helped me to build a beautiful life.
"It's not fair!" I repeated this useless phrase to myself multiple times over when I first was diagnosed with Lyme disease. How could it possibly be fair that my life seemed to point to one horrific disease that robbed me of my dreams!? How is it fair that my dream of someday finding true love seemed utterly impossible? All is NOT fair in love and war. Fighting a war against your own body is anything but fair.
I remember throughout my younger years I seemed to be in love with love itself. I loved the idea of falling in love, followed by a whirlwind romance, an extravagant wedding, and happily ever after. That dream seemed sufficient. Sufficient for lifelong happiness? I suppose so. Sufficient for long suffering, enduring to the end, and coming out conqueror with my faithful husband by my side? Well I suppose I never actually considered hardship grinding its way between me and my true love. Unfortunately for me my hardship came long before my true love ever made an entrance. Not only that, but at times it seems as though Lyme disease laughs in the face of love. And alas, "it's not fair."
To Lyme or Not to Lyme
The problem seems to be the never ending string of problems I seem to have. More like eternal string of symptoms, loud opinions, diet restrictions, supplements, and ex boyfriends. It all begins with a spark and ends with a burned out fire, and a few extra symptoms. It all really comes down to one question… “Despite my Lyme disease, am I worth it?” It’s something to consider when deciding the all-important decision of love and Lyme, or love and health?
So am I? Am I worth it? When I suffer headaches, skin lesions, excruciating pain, nausea, weakness, anxiety, etc… am I worth those daily battles? Battles that are not won by one simple gunshot but multiple gunshots aimed all at once. Eternal supplement intake, acupressure, heating pads, hot water bottles, increased water intake, hot baths, dietary restrictions, IV's, injections, detox, detox, and more detox! All of which are highly important battle techniques in fighting Lyme. One alone is not enough to relieve pain. They must all be implemented in order to defeat. Now tell me, what man in his right mind would want such a horrible fate thrust upon him when instead he could have a nice healthy woman who can pamper him to his heart’s content? Most men when given two different roads would quickly pick the easier route. And I do not blame them. It comes back down to that basic question of am I worth it?”
So far… the answer has been no.
Multiple Symptoms, Multiple Men
Throughout this journey I’ve managed to become acquainted with three “types” of men that are willing to date me for a short period of time. Each “type” of man has “symptoms” of his own that should send every woman with Lyme disease running! Lyme in not a disease for the shallow in heart. It simply doesn’t work with these kinds of men.
1. "The Hero"
The “hero’s” symptoms include the constant urge to “swoop in” and save the day! Any chance for them to rescue a cat stuck in a tree, or an injured bird is their cup of tea! This alone is not a bad quality, but when all of a sudden I become the injured bird then it becomes really degrading! I’d like to take a moment to clarify: I’m not a cat stuck in a tree, I’m not a wounded bird, and I don’t need to be “rescued.” I have a disease. This does not mean that I am incapable, or in need of “saving.” Finding my true love isn’t about finding someone to “fix” me. It’s about finding someone to support me. I don’t want to date superman, or spiderman, or batman. I’m not looking for a hero to “save” me. Service travels much further than saving. Forthwith compassion is much greater than “fixing."
2. "The Main Man"
The “main man’s” symptoms include the delusional idea that dating me would be equivalent to those tragically romantic movies about a terminally ill woman who falls in love with some hunk, followed by a whirlwind romance! This guy seems to think that he is the “main man” in my tragic movie plot. For the record, my life is not a romantic tragedy that you find in a movie. What they don’t show in those movies is the horrific pain flares, and the extra effort it takes just to survive the day. They don’t show the chronic migraines and the all over body pain. They don’t show the pure exhaustion, the seizures, or the daily routine of trying to eliminate as much pain as possible. Those movies are unrealistic. True love goes further than marrying someone just before they die of a terminal illness. There’s more to it than that. It’s so much deeper than that. My illness may not be romantic, but lucky for me I am much more than my illness.
3. "The Award Winner"
To the “award winner,” it does not matter the tragedy that is taking place inside my body, because he simply does not care about what’s on the inside. His symptoms include his keen need to win. It’s all about claiming his “prize.” I will always be a trophy to that kind of a guy. Something that looks nice that he can brag about to others, but when it comes to my hardships and my struggles, he doesn’t care. It’s all about him and how he looks, and when I look bad or am too sick, I all of a sudden become “a sacrifice” to him, or “totally crazy!” This guy’s symptoms include his clueless nature as to what I go through on a daily basis. He doesn’t know me. He just knows what I look like. To this guy I’d just like to say that I am NOT your trophy. I am NOT your object. I am NOT your toy. I believe that this man is the most dangerous of them all, because he’s very skilled at pretending that he cares. Well, unfortunately he doesn’t. Heaven help the chronically ill woman who ends up with the “award winner,” because he is definitely not your prize to be proud of!
Lyme that's Real and Love that's Not
In today’s society we all seem to have this delusional idea of what love is. Whether that be the “flawless relationship” which includes “happily ever after” where nothing ever goes wrong, or the sex saturated relationship that is centered on physical pleasure and actually has no correlation with real, true, and pure love. Both of those concepts are a hideously skewed idea of what love is, and with the majority of people thinking that we “fall in love” it’s obvious why it seems impossible to ever have a successful relationship with anybody whether they be one of the aforementioned men above or not.
When you have Lyme disease you learn things that you otherwise would not have known. Like how an act of true love is helping someone walk when they’re in too much pain to do it themselves. An act of selfless love is sitting at someone’s bedside and enduring to the end with them. True love is about walking side by side together, not about one person walking in front of the other. True love is putting that other person before yourself, and working together to make things work. This concept goes for both the sick person, and their healthy counterpart.
Love is not always going to be “rainbows and butterflies.” At times love is enduring to the end. Love is watching the person you care about the most in pain and staying by their side through it all. Love is about compassion, understanding, and long suffering. For we do not “fall in love” as the saying goes. Love is not this frivolous concept in correlation to tripping and falling down the stairs. For to fall in love would make it too easy to “fall out of love.” We do not “fall in love,” but quite the opposite actually. If anything, true love involves “rising to love.” When the person we love needs them, we rise to the occasion! We ascend in kindness, charity, benevolence, patience, and so much more! When looking at love with this perspective it somehow causes us to look at the person we care for with a little more respect, love, and understanding. Lyme disease is real, but this concept of “falling in love” is not. If it was, then every man that so called “fell in love with me” would easily fall out of love when he discovered that Lyme disease is a test of endurance, faith, and so many more divine attributes that at one point or another we all seek to have.
One Man that I Forgot to Mention...
In my aforementioned list of men that we all seem to come in contact with, I forgot one special guy that I haven’t yet had the pleasure of meeting. This guy doesn’t have the negative symptoms of the others. This guy sees me as a human being, not just a disease. A man that strives so valiantly to put God first in his life that in return God blesses him with the ability to love his wife “in sickness and in health,” and “for time and all eternity.” A man who realizes that his strength and abilities come from the Almighty Creator and a man who’s attributes are reminiscent of Christ, our Savior, and Redeemer.
This man sees past my Lyme disease and sees me for who I really am. He doesn’t see me as “crazy” and “exotic” but passionate and wise. Someone who doesn’t see me as “sick” and “a sacrifice to him,” but someone who sees me as strong and a blessing to him, despite my illness. This man has courage, because dating someone like me is going to take a whole lot of courage. We all want somebody who loves us for what’s on the inside. This kind of guy knows how to do just that. This kind of guy is what every woman wants, healthy or otherwise.
True love is incredible. It’s incredible when it’s done correctly. It’s incredible when it is centered on true principles established by God. It is incredible when you have two people, brought together by God, striving to stay together through thick and thin. It is people who love each other so much that they would do anything to strive to be a better person for the person they love.
So is it Really Fair?
Just to clarify, this is not about me bashing on men, women, or dating. This is not about me stereotyping unfortunate courtships, and blaming one person or the other. Not every man is the kind of man in the descriptions above. This isn’t about me blaming healthy people or sick people for the painful relationships that we all seem to have at one point or another. This is me saying that we all deserve better than what we are getting, so should we not all be striving to be better than we are? Better for our future loves, and better for our Heavenly Father who loves us perfectly?
A man who is on a date with a woman should respect her. A woman who is on a date with a man should respect him. It’s about time that men start treating women with respect and love and it is about time that women strive a little harder to become women that are worthy of that “prince charming” that we all so desperately long for!
The problem with Lyme disease is that it seems to place a wall between you and any potential suiter. It’s hard for anyone to look past such a drastic part of my life and see me for the woman that I am. This does not mean that I should give up hope.
So is it fair? I do believe it is. Lyme has somehow helped me to dodge more bullets than one. Lyme has saved me from marrying the villain with “nice hair” and “blue eyes” more than once. Lyme disease has somehow managed to be my own personal alarm system for the guys who think they somehow have a right to take advantage of me. I’ve dated my fair share of “heroes” and “award winners” and quite frankly Lyme has helped me to realize that it’s okay to take time to fall in love with the right person. Love is so much more than infatuation. Love takes time. Courtship is a time to become best friends and discover who you really are deep down.
No doubt about it, all is fair in love and Lyme. So to the chronically ill women who assume that you’ll never find “the one”, keep looking. He’s out there somewhere. Now is not the time to give up hope. I once had a friend of mine tell me that “it’s a good thing you dodged the bullet before it became a tornado, because you can’t dodge a tornado!” Your vulnerabilities due to your illness are very clear, and in a way they protect you from marrying a tornado. Love is so much more than what this world makes of it. You ARE worth it! Don’t give up faith or hope. God will provide a way. True love endures, which means we all can endure a little loneliness while searching for the love we’ve all been waiting for.
And to my future love, I can’t wait to meet you. I suppose life wasn’t meant to be fair, but fairness is irrelevant because I have Lyme whether that’s fair or not. I fight Lyme every day so I can someday make you happy. I fight Lyme so I can heal and be the woman that you need me to be. I strive to be a better person and center my life on God, so someday He will provide a way for me to find you. I may be chronically ill, but I can promise you that I will be the best chronically ill wife you could ever ask for. Not only that, but I do believe that I fight so hard so someday I can get better. I continue to fight so I will heal for you. I long to make you happy. I long to be your partner through life, for time and all eternity. “You lift me, and I'll life thee, and we’ll ascend together.”
Dear Future Children,
My dear babies, I know the difficulty of seeing your mother as young girl herself, but as I sit in the silence of night, being my inexperienced age of 19, I find myself dreaming of you beautiful children more often than not. I’ve always dreamed of you, but the closer I get to finding your father, and making a life of our own, the more I find myself longing for your presence in my life.
I often find myself dreaming of every precious memory we’ll make together. Your first word, your first step, or even the first time I have the privilege of laying eyes on you. I envision my sweet little clan following me into church, like a stream of ducklings clumsily swimming after their mother. I dream of every laugh, tear, and joy that will come from a calling as fulfilling and celestial as motherhood. I picture your first date, sending you off to college, and starting beautiful families of your own. And I can only imagine the joy that will fill my heart and soul as I watch you follow God, and live your lives accordingly.
With that said, I don't believe that motherhood is all endless bliss. I realize that for every laugh there will be a tear. For every joy there will be a heart ache. I especially know that chronic illness will somehow manage to find its way into our family. That thought is my worst nightmare. If it comes to pass, just remember that despite the hardships that will come our way, I'm still thrilled at the idea of bringing each and every one of you into the world. Raising you in a home centered on love for each other, and love for God will be one of my greatest joys. Every precious moment with a child (whether that child be young or old) makes the hardships completely worth it. I truly believe that.
My precious children, right now your mother is in the process of suffering though something awful. I hope and pray that you will never have to suffer on this excruciating level for this prolonged amount of time. But if it comes to having Lyme thrust into your life, your Mom will always be with you. I will fight with you, I will fight for you, and I will love you every step of the way. I’ve traveled the road of hardship, I’ve felt the physical pains of chronic illness, and I’ve endured emotional trauma caused by physical ache and pain. It’s not over yet. Your mother still has a battle to fight, and I intend to fight until the end so I can bring you children into this world and be the mother I intend to be, and that God intends me to be.
With that said, there are things I want you all to know. Things that you should cherish. Things that are a part of your heritage, and part of God’s plan for you. These words of wisdom from your mother come directly from my heart, and they will help you to navigate your way through illness and affliction. I will teach you as you grow, and I only hope that you will cherish my words, and keep them tucked safe inside your heart. Lyme is no easy battle to conquer, but as you fight, remember your mother who will never stop fighting until she comes out conqueror.
Your Loving Future Mother
Dear Future Husband,
You're probably comfortably settled in your bed right now, laying on your back with your hands tucked up behind your head. And you're probably staring at the ceiling, contemplating work, school, and other various complications of life. You may or may not be asleep, but either way you're probably thinking or dreaming about your future. And while your thoughts are dancing through your mind at this very moment, I'm thinking about you.
I'm fantasizing the first time we meet, our first date, our first kiss, and every memory we'll make thereafter. I'm questioning if I'll ever find you, or if you're simply a distant dream. I’m lying in my cozy bed, wrapped in my comforting blankets, clutching a pillow close to me, wondering if you're thinking of me too
But future husband, where ever you are, and whoever you are, if you’re thinking of me, I bet you've never considered marrying a “sick girl.” You'll never consider it until you meet me. And when you meet me, I hope you'll be able to look beyond the disease and see the person that is so much more than the illness that her body houses. Just know, chronic illness or not, I intend on being the best wife you could ever ask for, and I truly hope that your intentions toward me are the same.
You should know that it won't always be easy. I suppose an undertaking as celestial as marriage is never easy, but I truly believe that marriage is what you make of it, and what you put into it is what you’ll get out of it. I’ll put my whole heart and soul into our marriage. And through it all, God will guide us, He will never leave us. But before we dive into matrimony, there are things you'll need to know. Marriage with a sick person is no easy task, but I promise I'll make it worth your while, and I promise that through it all, I'll always love you.
Here are the things I want you to know:
Your Loving Future Wife