June 16th, Every Year

Today, on the anniversary of his death, I cannot even begin to describe how I am feeling. This death is nothing like the others I have experienced. He took his own life – what so many others like to refer to as committing suicide, but I’m not sure there could be a phrase more demeaning of the human I knew and grew with for so very long. There’s some bizarre notion that suicide is a selfish or weak action, but as my therapist and I discussed earlier this week, it is in fact quite the opposite. Killing what makes you, you actually takes courage and a whole lot of it.

David was one of my closest friends and he was absolutely beautiful. In fact, he was so good that some people just couldn’t believe that someone so kind, so genuine would take their own life. But these are the people who also did not know him save for face value. My friend David had been coming to me with his struggles with depression and suicidal ideation since early on in high school. We often stayed up all night on the phone or walking around the well-lit streets of our suburban community’s streets talking through the depth of each episode, creating a game plan for the needs of each individual upheaval. And we went on like this for years, until college gave us distance and he had a steady girlfriend to fill the role that I had so often filled in the past.

So when, two years ago, I received a call that he was dead, I had been running up and down the stairs between the basement laundry room and my second floor apartment. All I remember is everything turning slow motion. Dropping my laundry basket; the clothing slowly spewing all over and the basket bouncing down the creaky hundred year old stairs as if it were some kind of weird detergent commercial. But mostly I remember the lump in my throat, the heaviness in the pit of my stomach, and the hot tears streaming down my face in a what was quickly becoming a raging river leaving behind a dry black riverbed. A tribute to my utter devastation.

The tears stopped for days. And I think it’d all be a blur save for my friends who told me that I somehow managed to drive to their house the next morning only to collapse on their floor in the kind of wailing sound that only true grief can make. I cried the whole day without stopping; until my eyes swelled shut; until I could make no more tears; until I was absolutely exhausted. It was horrible and it’s still horrible. I’ve just gotten stronger or, maybe, used to it. I’m not really sure. All I know is that today hurts, not as much as the first day, but my God without You this would be absolutely unbearable.

So for now, it’s just unbearable.

 

“Fuck your grief and
fuck your tragedy.

I am going to drop this sorrow
like a piece of
trash,
and it will not make for a good metaphor,
and it will not be pretty.

But neither were the tears,
neither was the hollow
in my chest.”

-Lana Rafaela

Progress Through Progression

It’s strange. I’ve been diagnosed with a progressive disease for nearly three years now and yet every single time it seems to take a significant turn for the worse, it seems just as shocking as that one night in September when I first found out. I should have known this was coming. Actually, I did know, but it just so happens that there is no real way to prepare for the way that it feels. So, here I am. Feeling it, and it’s absolutely horrible. I’m a three-year old kid who has lost their parents in a giant crowd of looming figures, whirling around and filled up to the brim with fear and panic and dread. Again, this isn’t a loss you shouldn’t have seen coming. It was clear as day, just as the many more in the future will be once they’ve hit me with enough force to knock the wind right out my chest. Every damn time.

Optimism. I think it’s something we all strive for. Not many want to believe that we live in a world that is filled with a wide array of evils, even when we know it to be a fact. We don’t want to believe that bad things happen to those who are good or innocent. Yet there is no denying that these kinds of things happen all around us every single day and it hurts. I mean, it really fucking hurts. We can’t just reason our way around it. It simply does not make sense.

And this is sort of how I’m feeling in this very moment. I’m sitting in a coffee shop across from one of the few friends who has never seemed to give a second thought to coming to my aid. I haven’t really said anything yet because, well, if i did I fear I might explode into a puddle of tears. I’m grateful, though, for these friends and acquaintances who recognize the severe nature of the feelings that come with existing in this sort of limbo, facing them alongside me without complaint nor question.

Yesterday I cried openly to a friend, finally able to release some of the built up emotion from behind, as the man from the coffee shop down the street from my home says, my sweet smile. That same set of teeth that flashes at strangers in the halls of the hospital I spend a little too much time in these days or that fiercely attempts to blockade the river of tears dammed up just behind my blue eyes. Existing in this way is not like having a cold nor is it like having an injury – with those come the hope, sometimes the promise of recovery. Chronic illness is another beast entirely. It’s all day, every day – something you just have to endure more than you fight. There is no escape from the constant pain and large array of grueling symptoms and I am, in turn, forced to create my own source of light in the darkness requiring you to build up a strong heart and resilient mind. It’s a world unlike any other – one of constant loss and grieving, of seemingly impossible feats, and incredible fear. It’s experiencing all of this on repeat with a societal expectation that you should “get over it.” I could continue to complain about the atrocities of living a such as this, but I won’t because even though it is exactly what I have described above, it is has also been the reason I have met the people I consider some of my closest friends, the reason I seek to better my relationship with God on a daily basis, and the reason I have been able to become the pretty awesome human being I am today. It’s the reason that through everything I have been through, I am able to take a step or two backwards and find what good, light things lie hiding in what so easily is mistaken for dark and hopeless.

 

 

Lately

Recently, I have felt an overwhelming sensation deep in my gut telling me that something is wrong. It’s a sick, twisting feeling that I cannot seem to get away from and the longer it’s here, the more emergent the need to run becomes. Unfortunately, I am no longer able to just pack a bag, jump in the car and be on my way. The state of my health not only impairs my physical and mental capacity to make even the shortest of trips, but it requires a massive amount of prior planning. The girl who used to lead great adventures on a whim now spends days organizing medical supplies, counting out pills and supplements, and resting in order to hopefully build up a reserve of energy. I often find myself troubled by this – another loss of life I am forced to grieve. I can, of course, adapt to my situation and find a new way to escape when the horrors of my health and my life become too much to bear. And while this may not be ideal, I am grateful for any opportunity to relieve my battered mind and body.

Guilt has also crept back into the space in my head as if I forgot to close a door or left open a window. I hate it, the whole idea of it. Feeling guilty for something so out of ones control seems wrong, but society’s get better mentality nearly demands it. It’s the guilt of surviving when others around me do not, the guilt of no longer being a productive part of society, the guilt that comes with the financial strain I put on my family, the guilt of letting those I love down when I can do nothing but try to survive, and worst of all the guilt that comes with watching the pain and suffering you bring onto the people you love. I can’t tell you how many times I catch myself apologizing for being sick or for having to cancel plans or for all of unanswered calls, texts, and letters. This is not the kind of person, friend, sister or daughter I ever wanted to be, but it is in fact who I have become and I am learning to be okay with that.

Along with guilt comes fear and trauma. I am afraid for the future and what that might look like for me. Because of this I try not to think too far ahead and stay in the present although my fears often times flood in especially during bouts of depression or insomnia. I truly try to live in the moment and when I do I am able to shed my worry and become the carefree spirit I am deep down, but illness is a demanding bastard that bends me to its will no matter how hard I may try to resist. It becomes traumatic after a while. My brain has rewired itself to cope with the consistent pain, loss of bodily function and cognitive ability, friends, and many of the things I loved to do. All of these things stolen from me, some suddenly and others over time, sparking anxiety, depression, and panic.

I wish I knew a way to accurately articulate the things I am feeling, but I don’t. I have become quiet. I never know what to say or when I do, I try to speak but nothing seems to come out. I started to isolate myself when a stranger mocked me for my badly shaking body – my tremor no longer masked by drugs because they ended up almost killing me. But it isn’t just strangers. Careless or frustrated words of the people I care about cut far more deep. The micro managing, the “stop being so lazy”s, the”try harder”s, and all the words that cut down, doubt, or undermine. The reality is that I am doing the very best I can. Each and every day I wake up and try as hard as I can, giving as much as my body will allow me to give. It may not always appear that way from an outsider perspective, but unless you have a chronic or life-altering illness then I simply don’t think one has the right to make that call. Empathy and unconditional love are the greatest gifts I have received along my journey, and if others are unable to, at the very least, try to meet me with open hearts and minds then I simply do not have the energy or time to waste on them. I’m not saying that I won’t treat them with those very qualities, but rather that I must invest in those who are able to reciprocate them. Time is extremely precious and in a body that tears me apart all on its own, I am only interested in genuine relationships that build and grow.

Sometimes the Mountains Are Calling and You Cannot Go

Last Friday night, I was kicking myself for starting yet another weekend sitting in bed by myself. While this is a pretty normal occurrence for me while living with chronic illness, this day was especially challenging. After just being discharged from a too close for comfort experience with septic shock and dangerously low blood pressure, my soul was just itching to get out and do something.

It was in this moment that I received a phone call from my sister asking me to meet her in Missoula, Montana–about a three hour drive away from my home. She excitedly explained that her and a few of her photographer friends would be hiking up to some natural hot springs in the snowy wilderness of Lolo Pass. This was something I had been dreaming about doing for quite a while, and the truth is that any time spent with my sister has the ability to make me feel immensely better, so as a result my heart was immediately set on the possibility of soaking in those steaming pools, while taking in the dreamy landscape.

I’ve always found that both my heart and soul find an intense kind of peace in nature. There is something wondrous about how each and every living organism comes together in the sort of perfect way that could only be the work of God Himself. And while Faith has always been a strong foundation for the life I am continually building, I have never been able to feel the presence of the Spirit so much as I do while immersed in nature. There is a quote I found somewhere a few summers back that probably explains this a bit better than I can: “At a very early age, I learned that in nature, I felt everything I was supposed to have felt in church. Walking in the woods, I feel in touch with the universe.”

Needless to say, my heart was almost immediately set on taking this trip. The potential of all the photographs to be captured, memories to be created and the peace of mind to be found overwhelmed my heart and soul with excitement. That was until reality set in…the realization that having just nearly died did not make this the smartest move on my part, and whether I could even physically or emotionally accomplish this without slowing down or becoming a burden to this group of able-bodied adventurers was out of the question. With this my heart sank.

Coming to terms with having an incredibly adventurous and spontaneous soul trapped within a body that wants to die is not only difficult, but crushing. There are times when I find myself crying out, “my soul cannot survive in this body.” I know this is not true because by now I know that I can survive just about anything. Recovery may not be an option, but adaptation is and always will be. I have to adjust to my new limitations, both survive and to maintain peace within my relationships with God, those in my life, as well as my physical body.

To say that I often find myself longing to immerse into the sweet serenity of the natural world is an understatement. And while I am happy for my family and the friends whom I love as they venture out and explore, their Instagram posts often leave a bittersweet taste and a twinge of envy. I understand that I now exist in a world in which my body and illnesses dictate my every move; more often than not keeping me confined to my bed, my room, or even in the hospital. But this is also where my relationship with Jesus has grown in the most incredible of ways. I have learned to rework my thought process and look for His presence in new places. Where I used to only feel that I could find God’s presence in the great outdoors or through the process of creating, I have made the most grand of discoveries: He is everywhere. Always. So even though the mountains still call my name when I find myself anxious or overwhelmed, I know that sometimes I will be unable to follow their call. And that is perfectly okay.

Insomniac

Dread is the feeling that hits as soon as about 9 or 10 pm rolls around. It is the sudden and heavy twisting of my stomach when my friends tell me they’re off to bed.

Dread is the fact that tonight, like every night, I’ll be sitting alone in the dark with all of my issues and emotions that I can so easily brush off during the day with a smile or a chipper conversation.

Dread is the weight of the unknown; the loss, the grief, the pain, and the utter silence of that person who–up until they started to notice my bones begin poking through my skin, the shine of my pale bald head or the dark purplish-black circles around my eyes–had said that they were going to be there by my side, all the way through.

It’s been happening for a little over a year now: this whole not sleeping thing. I’m not talking about going to bed too late or tossing and turning through the night. I’m talking about pulling back to back all-nighters, as if they were a normal occurence. When I did sleep I would rest for maybe three to four hours a night, and I say rest because that’s really what I was getting. Doctors confirmed that I wasn’t even hitting REM sleep, thus waking up the next morning feeling just as, if not more, tired than the day before. I became so fatigued that I was no longer able to remember even the littlest of things, like names or what my parents had asked me to pick up at the grocery store just minutes earlier. Other times I lost my car in the hospital parking garage, unable to remember where I had parked sending me into a full-blown panic attack. Even more worrisome was that I would lose my train of thought mid sentence, having to have friends or people around me remind me of what I was just saying. Honestly, this made me feel like an idiot for both not remembering things and not being able to recall simple things such as dates, numbers and spelling.

The real kicker is the way it messes with my head; making me feel disoriented, confused, and even a tad insane at times. I can’t tell you the amount of times I’ve been pulled in and out of hallucinations. Seeing one thing or really believing you are in a certain place and then, suddenly, snapping back to reality only to realize that whatever you thought you saw was merely all in your head. They are terrifyingly realistic. Sometimes I wake up screaming. Other times as if the wind has been knocked out of me. One time I even had to call my friend to make sure that she was alive and not dead as my hallucination had suggested. It’s like being trapped between two worlds but you keep on switching back and forth, back and forth, never truly aware of where you are until you are whisked off into another reality your brain has created.

I’ve tried basically all the medications for sleep and sedation that my insurance policy will cover, but they only seem to do nothing at all or give me some pretty terrible side effects ranging from uncontrollable crying to suicidal ideation. Currently, I’m taking twice the normal dose of Ambien for an adult female. You know, that stuff you always hear about on the news on how some dude on Ambien went out and did something ridiculous like purchasing a live yak online from some foreign country for like $6,000 and having absolutely no recollection after the fact. So, I’m sure you can already predict how this can turn ugly really quickly. People have even committed crimes, even going so far as to murder people often as a result of mixing the drug with alcohol, which you are strictly not supposed to do for these stated reasons. Not to say that if you take it that you’re going to go out on a killing spree, but it’s easy to miss the thirty minute window you have to fall asleep and what you do in your unconscious-conscious state can be both difficult for others to understand/deal with and causes you to become a potential harm to yourself and others.

But there is also the fact that I do some of my best thinking at night. The quiet isolation helps me to think a little bit more clearly, listen a bit more intently to God and write about what is pressing on my heart. A good percent of my best pieces have been, as my best friend would say, written at some ungodly hour.These are the good times. The times when I can devour the book suggestions my friends have given me or enjoy some Netflix all to myself. I find that I enjoy the gentle company of the moon and the brilliant presence of the stars. How the low clouds blanket the hills and mountains or how the pitter-patter of the rain falling on the roof sounds as sweet as a lark’s song.

And while this all sounds rather dreamy there is also a painful, desperate and quite morbid side to staying up all hours. Every single day I wake up exhausted. I’m not really sure I could tell you what real restful sleep even feels like anymore. There are the hallucinations which make it difficult to distinguish between what is reality and what is psychosis. It’s seeing the best friend you called your brother for all those years. Being able to talk to him, hug him, lay on the top of that car roof up at the top of that deserted mountain road, counting the shooting stars in the heat of a summer evening. And it’s violently snapping back to the real world where that friend you called brother, who called you a princess, who always broke our small town curfew so we could walk to the golf course and lay, laughing, all night in the cool, dewy grass, has been dead for over two years because he took his own life. It’s flashing back to the family member who backhanded me so hard I fell to the ground; the family member who wrapped both of his hands around my neck, feet dangling above the ground. Their face, red with rage, burned forever into my mind. It’s waking up screaming or hyperventilating because even a dreamlike version of that night still sends me straight into an uncontrollable panic attack. The night is both a welcoming home and a barren ghost town that will haunt me until my grave if I am not careful.

But even in spite of all of this, I still see my severe insomnia I struggle with as both a blessing and as a curse. If you know anything about me by now, you should know that I truly think your attitude can make a huge difference in the outcome or path of your outlook, life, disease(s).. If it weren’t for my insomnia, how would I have my morning chats with Emma, a friend battling Mast Cell Disease halfway across the country? When would I have my quiet time, my creative time, my time that is just for me? I’m definitely not saying that the insomnia isn’t absolutely dreadful, because it is, and it kind of makes me want to punch the s*@! out of something. I am just saying that there are silver linings in every situation. You just need to look hard enough for them.

Transparency

There are a total of seven different tabs open, each containing a draft of an attempted blog post abandoned part way through. It has been a week of absolute hell and if we are being honest, which we are, it took me about five good minutes to even sit myself up so I could start typing this. I think this and my mental state because of it have a lot to do with my complete lack of creativity and after spending the majority of my day in tears or staring miserably into space as one does when drugged out of their mind, it dawned on me that I don’t even have to be creative. I can just be honest, transparent about my experience, my feelings and the creativity will happen because I am an artist. The creativity is who I am.

Today I saw a caption on an Instagram photo that went like this: “I’m not going back to bed until I find a way to tire myself out. It seems that everything tires me out except trying to get some rest.” I have no idea if these are just someone’s words or if it belongs to some song or movie but that really isn’t the point. These words stuck out to me because I could relate and honestly, in the midst of my creative rut the pages of my journals are chock-full of disorganized and scribbled song lyrics, pieces of poetry, social media captions, and lines from films and books alike. As if in my loss for words these could somehow make up for the silence. Silence. I just spent an hour listening to a slam poet speak the same words over and over again until I felt that I truly understood what they meant. That, “..tragedy and silence have the exact same address..” and maybe that is the reason that I couldn’t speak, still can’t speak about the abuse I receive from my own family member or why I couldn’t even admit until this year that my own relative sexually assaulted me when I was a just a child or that in a few months it will be a year since I was raped and my mom still thinks that it happened to my friend because I was too ashamed to tell her the truth. Perhaps this is the reason that I shut down, have to go looking for my voice or claw at my esophagus for the words sitting so heavily in my voice box whenever something bad happens. Maybe, just maybe, this is why I felt relieved when my friend sat with me on the couch a few weeks back, holding my hand as I sifted through the sand of my thought because my brain had become a desert. My mouth, my lips desperately trying to convey the feelings I was failing to gather when he said, “It’s okay. Some things are just too terrible for words.” A rush of reassurance. It was, it is okay if there are no words in the face of calamity. In this new space of tolerance and understanding I was, by the end of the night, able to smile and utter the words, “I am so blessed,” because I am despite all the bad (and let me tell you there is quite a bit of it in my mere twenty-three years of life) the simple empathetic act of my friend created a safe space that allowed me to see beyond and rejoice in all of the goodness that I am also surrounded by each and every day.

I recently purchased a self-help book I saw on the Barnes and Noble discount table for two reasons:

  1. I am a sucker for good cover design and good design in general. I can’t tell you how many bottles of wine I used to have to pour down the sink after purchasing them simply because I found the label aesthetically pleasing. Oh, the life of an artist.
  2. When I opened the book to the first page one line stood out to me and I knew immediately that I had to own it. Well, and the fact that it was only seven dollars, but that’s beside the point. The line goes, “Emotions are energy. All of them – not just the good ones.”

This really struck me because for so long I believed that I had to repress my negative emotions so as not to come off as weak or crazy or whatever I seemed to believe at the time. I think this applies not just those who suffer from major illnesses or tragedies, but everyone because we all experience hardship and pain in our lives. Those things are not relative and it is not a game of who is worse off. Actually one of my biggest pet peeves is telling a person in distress that things could always be worse and while, yes, this is in fact true if does nothing but demean the individual’s struggles and create the complete opposite of the safe environment that I talked about earlier. This friend’s empathy created a safe new environment in which I now felt an overwhelming need to discuss what I had been at a loss for words of prior. After composing a quick text, my friend’s roommate came downstairs, sat and listened to me talk about the abuse and trials I have faced both throughout my life and now as well as my mixed feelings about the forgiveness and kindness I strive to treat these individuals with. His response was absolutely touching. “That’s the Jesus in you,” he said, then thanked me for sharing and waited until I dozed off to sleep. I awoke the next morning to a folded note next to my pillow that read, “1) Our home is your home, always. 2) You are loved. Don’t ever forget it.”

You see, it’s these seemingly small acts of compassion and kindness that make existing in a world filled with so many evils bearable. They enable us to see the good and spread the good even with the presence of wickedness still surrounding us. This is also the rooting of our Faith as we believe in a God who will deliver us from evil and His Son who made the ultimate sacrifice so that we may be forgiven for our sins, our own individual evils. We all have emotions – both good and bad. Recognizing and giving the time of day to each and every one of our emotions is not only vital to our own mental health, but enables us to grow spiritually so that we may continue to strive to live in the image of Jesus, the ultimate example of empathy. All loving, all accepting and all-inclusive.

1 Peter 1:6-9

So be truly glad. There is wonderful joy ahead, even though you must endure many trials for a little while. These trials will show you that your faith is genuine. It is being tested as fire tests and purifies gold – though your faith is far more precious than gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.
You love hime even though you have never seen him. Though you do not see him now, you trust him; and you rejoice with a glorious, inexpressible joy. The reward for trusting him will be the salvation of your souls.

#LiveAuthentic?

When I scroll through the variety of social media platforms I am a part of I often find myself feeling overwhelmed by the sheer amount of perfection I see thrust forward by friends and strangers alike. I find a sort of conflict deep within myself as I look at the edited and perfected images that fill my feeds. I find myself comparing myself to these posts that are somewhere being scrutinized over behind a screen. Is this the right look? Is this what I want to portray to my followers? Does this selfie look good? Does this look good in my feed? And let’s not even get started on the decision behind that witty caption. I cannot lie, before I fell ill this was me. I wanted my life to look perfect. I wanted the parts of my life I shared with others to not just look good…No, I wanted them to look perfect. I wanted my viewers to think wow, this girl really has her shit together. And at the time I thought in some bizarre way I was being “authentic.”

When I got sick and my life turned upside down and every single other way possible, I obviously had a lot of realizations about what really mattered and what truly living authenticly was. I found myself in a place where each time I posted one of these perfect photos where I felt sort of disgusting. It took me quite a while to understand that the fact that I felt unable to be honest and truthful about what I was experiencing and all the epiphanies I was having on a nearly daily basis. The truth was, I no longer cared about what I was posting as long as I was being honest and true to myself. Because at the end of the day or the end of it all looking like I had my shit together was the farthest thing from what I cared about it. The decision to share my story through photographs, writing, art and social media in a completely raw and authentic way meant becoming extremely vulnerable, but even more so it meant being free…Free to be myself, to share what I was actually feeling, to shed light on a life that makes a lot of people uncomfortable. I no longer felt like I had to hide or lie or sugarcoat my experiences because I now believed that they deserved the time of day simply because they were valid; are so very valid.

So if I have any advice for the people reading this, it would be this: no one is telling you to keep up this facade. Our lives are far from perfect, so why put so much time and effort into making sure that the you others see is? There is so much liberation in choosing to be truly authentic. I’m not saying you have to put every single thought or feeling you have out there, but rather that it is okay to admit that you have difficult days from time to time or that you are struggling with something or that you find extreme joy in doing something incredibly odd. Be true to yourself and to others because by doing so you just might find that there are other people who share the same feelings or interests. You may just find that this shift towards authenticity will create a ripple effect that spreads across all aspects of your life, filling you up in such a way that you never could have imagined.

Just some food for thought.

By Grace

“Tell me your story.
Where do you begin?
What have you created?
Are you free?”
-Alison Malee

In the fall of my twenty-first year everything that I had come to know about my life and myself was ripped from me. All the things I had worked so incredibly hard for, the goals turned into reality smashed to pieces before my eyes; all the dreams I was still chasing left slipping through my fingers like sand. My strong body reduced by a kind of physical pain I still have difficulty describing. I was met with the prayers and well wishes of all those who cared for me. I was greeted with flowers and gifts as if the amount of attention received would directly affect the havoc being wreaked upon my system. I wish I could say that all of this support stayed with me through my battle over the next two and a half years (bringing you to this moment, here and now) unfortunately that was no the case. The more foreign my body and more evident my illnesses became, so did the world around me. I was, more often than not, met with an inability to empathize with my situation and a severe lack of knowledge about how to live with a life-altering illness. I found myself in a society where those who fall ill are expected to get better because that’s simply how it works.
Doctors will treat you.
Science will cure you.
God will heal you.
When there was no cure or treatment to be found I was passed from doctor to doctor and then hospital to hospital. When my prayers of healing were not answered I was told that my faith was inadequate. Somehow I wound up thinking that my suffering was my fault, that my presence was a burden to those around me.

It’s now fifteen days into the new year. 2017, can you believe that? I have relearned how to walk, endured botched drug trials, been declared chronically malnourished, lost function of muscles and organs and nerves…I have come to know the greatest of losses and the deepest of sorrows. I have been to the lowest of lows. There is no shortage of suffering in my story. But along with the bad has come the ability to find resilience within my aching bones. I have come to know the most profound happiness and peace through the strengthening of my faith and by forging ever onward, greeting life on each new day with open and loving arms. Through Christ I am able to accept and trust in whatever comes my way. Courage is not about being unafraid. It’s continuing on with grace and the notion that He will be ever present through all of my fight, both the good and the bad. My faith is as raw and as real as each twinge of every nerve, the quake of my tremor and every explosion that occurs in my brain with the onset of yet another migraine. It is messy and challenging and so much different than what my beliefs looked like prior to falling ill. I ask, “why me,” and, “why haven’t you healed me,” more times than I’d ever like to admit, but every time I fall down this the deep, dark hole of self-doubt I am lifted back up by His resounding love. He offers a kind of hope that breathes into me the strength to outlast and outshine all of the pain and agony that is living inside a body that betrays me.

So, as much as I like to portray the joy and truly beautiful moments that I experience this year, I will not deny the truth of the uncertainty that I face with each coming day. My life is a treacherous and never ending battle, yet I have the will to refuse giving it anything less than my all. I am often plagued by anxiety and depression, yet I am able to detach from my fears and find peace. I am loved deeply and filled up with the most joyous light, yet I am humbled by the places I have been and the things I have seen. To think, I have God to thank for this, His Son to thank for this, the Faith to thank for this…That is more than enough for me.

For those who endure the silence with me

The most difficult part of being sick that I have experienced in the past, now almost, two and a half years, has been the disconnect between my brain and my voice box that occurs with each and every steroid treatment. Now I’m not quite sure if this happens to anyone else, but when the Prednisone or the SoluMedrol or whichever infusion or injection it is begins I am sucked away into my own personal universe. It feels as though I’m being crushed by an immense weight I cannot see. It is being unable to turn my thoughts into something even semi coherent to myself let alone anyone else. It is literally being unable to make words. Every time I feel trapped and crushed by the depression that comes with having your serotonin levels obliterated. Every single time, I have felt the weight of it as I watch the distance between myself and my friends, my family, my loves growing exponentially with each day gone by. It’s horrible. I hate it with every ounce of my being and yet, I can do nothing but watch in horror as it plays out. My brain plays tricks on me; hallucinations, vivid nightmares and the deepest depression I’ve come to know.

Every single time.

The first experience. Two years ago this February. I laid in my bed in the dark alone unable to do anything, but text one of my closest friend at the time, “help.” Of course, they had no clue what to do and after taking me to a farm that I hold so dear for a few days I found myself in the hospital with doctors being unable to do anything other than drug me so that I no longer had to feel the horror of it. Now, I no longer seek out help at the hospital. I know that this will end.. But it has only been a little over a week and I find this hard to believe because time drags out and it feels as though I’ve been lost for months. I’ve convinced myself that my best friend, who loves me more than I am probably able to comprehend, does not love me or want to see me or talk to me or care. Why? I wish I knew. I wish I could experience this differently or not take the drugs in the first place but I do not have a choice and my hope is crushed and my will is broken with every soul shattering nightmare that wakes me from my sedation. I live in fear during these times. I exist in survival mode: distract or drug. This is the only way I know how to survive it.

I apologize in advance to those who experience this with me.

Pardon my grammar.

XO.

My Blog Turns One: A Year of Refection

A year ago today I decided to create a blog detailing my life and struggle with the chronic illnesses and disabilities that will most likely take my life. Back then I never in my wildest dreams could have imagined that my words would not only reach over 9,500 people from more than 40 different countries across the world, but also help to make connections that I am certain will last a lifetime. And all this while advocating for change and awareness. Sharing my truth in such a vulnerable, uncensored and public way has allowed me to transform into the confident, strong being I now know that I was meant to be.

I can’t tell you the amount of negative feedback I have received:
“You should get a life.”
“Don’t you have anything better to do?”
“You’re just one person. How could you possibly make a difference?”
“But you don’t look sick.”
It goes on and on as I’m sure it will continue to, on and on.

But what these individuals fail to see is that I am making a difference with every unfiltered story I bust out in some random coffee shop. The reality of existing in the way that I, and so many others, do is far from pretty. In fact, it’s many people’s worst nightmare; a life ruined by illness. They look on with pity and a strange sadness deep within their eyes that I do not quite understand yet. But I have never viewed this huge life alteration in the way that so many others seem to perceive it. That’s not to say it doesn’t absolutely and utterly suck sometimes or that I do not struggle because I do, incredibly. I have learned that it’s okay to be sad sometimes, to be devastated sometimes, to be so incredibly angry sometimes… as long as, at the end of the day, I keep going. It is because of this that I consider myself not simply to just be surviving, but to be thriving. 

I do not share my story with an unequivocal transparency to gain the pity of my readers, but rather quite the opposite. I share the reality of my situation in the hopes that my words will resonate with others who are similarly struggling both with the illnesses that wreak havoc on their poor and undeserving bodies as well as the disturbing stigma that envelops the chronic, terminal and mental illnesses oppressing each and every one of us. Perhaps that is why we are the ones’ who have been destined to battle these often invisible diseases; our own cells launching calculated attacks on the very body that they are created from. Perhaps we are the strong ones. Perhaps, just perhaps, WE are the ones who were made to stand up and fight for the right to be accepted, to be loved, to be noticed, to be cared for. We are it and we so much more than what the outside eye can see.

So, thank you. Thank you to everyone who has helped grow my once tiny idea, into a platform that has reached to promote hope, change and the will to fight for one another. I could not do it without you all. There are no words to describe the sheer amount of gratitude and love that has filled my heart.