smile in pain

For many years, my life has been controlled by an invisible illness. Perhaps recently with the mass weight-loss, it has become more apparent that I am sick, however most of the time my appearance would never suggest that I’m somebody who’s chronically suffering. 

This story may not be the most poetic, classically structured, print-worthy, or meet the approval of all the English Majors out there, but one thing I can promise is that this is very, very real & unfiltered. I suppose the one good thing about living a life that’s in a constant state of chaos, is you don’t really have time to crave accepted or entertain the disproval of others — It’s funny how that pans out. 

In late 2018, I had my wisdom teeth removed. Post-surgery, the life I once knew became a fantasy. The knowingness that I could once wake up, jump out of bed, hop into the shower, and run out the door, is haunting. It’s such a foreign reality, that I almost resent who I used to be, because I can’t be him anymore. At the time, I wanted nothing more than to be someone else.. somebody better, smarter, better looking, famous, you name it.. not even realizing how fucking blessed I was to wake up daily & not suffer. — It’s unclear why the surgery was the trigger of this, however it’s likely these conditions were already existing in me on a smaller scale, & the surgery fast-tracked the inevitable. 

From the outside looking in, it’s understandable that others won’t fully realize how debilitating these conditions are. For the most part, they’re fairly unfamiliar to the vast majority of the world — the concept in general is difficult to grasp. It’s hard to relate to extremes that aren’t in your handbook of personal experiences. As difficult as it is to reflect, I’ve experienced both sides of life. I’ve had the pleasure of living out my dreams to a certain degree, done what I’ve loved for most of my life, & prior to this, I rarely battled any major physical health issues. One thing I can say, is someone whose been an extremely mentally woke/cognitively “aware” individual, what I once “thought” the definition of suffering is, was so far in left field it’s not even funny. We cannot truly learn the depths of something by reading it, or even seeing it for that matter. It does provide a visual understanding perhaps, or at least conscious awareness that pertains to the illnesses/conditions, but living it is so, so incredibly different. Everyday things are impacted, things you would never even think of like how you shower, or the amounts of food/foods you can eat. Even just the simple task of going outside and standing in the sun is undoable now, because my body absolutely freaks out anytime there’s a minor fluctuation in temperature.. Some may say “If we can’t comprehend it by learning your story, what’s the point in even listening?” — the important thing throughout all of this is people like me, we don’t necessarily need you to know the depths, to be honest, from my personal heart I pray to GOD you never have to learn the exact degree that this suffering consists of.. what we do need the world to know is that we’re different.. Our lives are very much separate from the ordinary world, and it’s so fucking important that people at least open their mind to accepting that life for us is much more difficult than it may seem to the naked eye. If my story can help open the eyes of someone that was once closed off, or mentally dense, that is a huge victory. 

One of my conditions is called Dysautonomia. To put it simply, the autonomic nervous system is basically the control panel of our body, that regulates blood circulation, heart rate — all the important stuff that should happen automatically. People with this condition have a compromised control panel, so even things like rolling over, standing up, putting on a stock, can send your heart rate from 60bpm to 180bpm+ in an instant. Another condition I have is called Erythromelalgia, this one is a song of a bitch. It’s basically burning of the hands, feet, ears, and anytime my body changes in temperature, my chest, arms, and forehead burn/itch like you couldn’t believe. To put it into accurate terms, it literally feels like I want to rip my skin off, because it’s as if I am burning from the inside out.. The only way I’ve ever managed to control this is by living in a cold-climate 24/7. Anything above 63F/18C and my body is in the danger zone. This is easily the worst condition that I have, and basically prevents me from doing most things. The burning sensation of my extremities are far more frequent, and cannot be avoided by cool temperatures.. This happens almost on a cycle, 12-14 hours after I wake up. Once the burning in my feet is triggered, I can no longer stand up. If I do, my feel will burn, veins will bulge like 1-2cm out of my feet, and the pain from standing is incomprehensible. I’ve literally screamed out loud and dropped to the floor many times from this. The only remedy I’ve found to help with this is going to sleep… As long as I am not walking around or overly physically active, I can avoid early daily triggers within that 12-14 time period, but if I encounter a heat trigger it will sometimes cause the extremity burning to start early & I will have to suffer even more throughout the day. As a guitarist this poses a great issue, because when I play for extender periods of time, my fingers burn/hurt, and it prevents me from practicing/recording like I used to. Even things like sitting at my computer chair are difficult tasks because my feet will go purple, and the opposite will happen, causing my feet to be ice cold/painful.. It seems like no matter what I do, there’s no winning in any of this.. The best method that has worked for me is laying in bed constantly, trying my best to be a producer from my laptop in my pyjamas, all while trying to keep my mental sanity intact — which I’m sure you can imagine is a very, very difficult thing to do. 

One thing that has helped me a lot is my family/loved ones have helped me throughout this process a lot. I think this is the part that really helped me hold it together. Things like preparing meals for me, driving me to appointments, my Grandma would even go as far as walking with me at a snails pace outside, just to add extra comfort incase of an emergency. If I can say anything, having a great support system is pivotal in this experience.. I can only imagine how hard it must be for those who suffer with this, that are surrounded by people that don’t love/support them. My heart is forever dedicated to all of you. If you’re reading this and you’re a parent to someone like me, just realize that as much as we may be an inconvenience to you, it’s about 100x harder on us mentally to actually live with these conditions.. Trust me, we want to run, we want to play, we want to be on sports teams and make you proud.. But understand that we can’t. It’s not our fault, we didn’t choose this path. 

The daily battle of this never ending internal war.. The great unknown — constantly divided/disconnected. The mental battle attached to this lifestyle is catastrophic. How many miles must be travelled before there’s any sign of relief? Is feeding into the system and filling our system with pain meds and zombifying ourselves the only way that we can escape? I refuse to believe it. Aside from smoking weed a few times in high school, I’ve never done drugs before. It has always been something that mortified me, and I’ve seen so many people that I love consumed by them. So throughout all of this, I’ve just suffered in pain day in and day out. It’s not a feeling anyone should ever have to experience. You have to think about the mental repercussions that has on someone.. Thankfully I am a very stubborn/disciplined human, so I’ve managed to somewhat keep my mental state controlled.. however to the guy/girl out there that has no backbone or support system, I know that they are in an even worse place than me.. Often such a bad position that they end their own lives, or succumb to the medical world that is based around numbing their lives. I’ve seen the before and after of someone that is consumed by pain drugs — it is not the outcome anyone should have, let alone the only favoured one.  

If I am being honest, there’s 1000s of pages that could be written on the depths of this. In courtesy of your busy schedules, I’m going to try my best to keep this as condensed as possible. 

Let’s visit the symptoms that are encountered daily/weekly. Since 2018, there hasn’t been 1 day of relief or a symptomless day. This is going to be a length list, and it’s honestly possible I will forget to mention some..

Rapid heart rate
Heart flutters
Weird breathing patterns/difficulties
Chronic leg pain
Drastic weight loss
Shoulder/Back Pain that doesn’t go away with massages
Sharp Chest Pain/Irritation
Burning feet/hands/ears
Burning skin when temperature changes
Freezing Cold Hands/Feet (alternates between burning/freezing)
Joint pain
Memory loss
Difficulty finding words when speaking (occasionally)
Constant thoughts of death/dying
Heightened Depression/Anxiety
Panic attacks 
Flashing lights/Delayed vision 
Numbness/Tingling in my extremities
Easily irritable 
Chronic fatigue
Blood pooling in feet (Purple feet / bulging veins) 
Inability to sweat 
Body shakes / tremors 
Extreme allergies to anything scented, detergents, fragrances, foods, etc.

As you can see, the list is absurd. I experience a lot of these on the daily, and at the very least weekly. Prior to getting sick, my experience with these things were rarely, if ever.. It’s crazy how life can change so quickly/drastically.. I’ll never understand it. Part of me is in disbelief that this is even possible, there’s a recurring belief that I died & I’m currently in hell.. It would make a lot more sense to me. It’s as if I’m looking in a mirror, with an unrecognizable person staring back at me.. Who have I become? Why am I this way? What happened to me? … 

We don’t know how long our story goes on for. Life is fragile. All I can say is that throughout my experiences, I’ve learned A LOT. There are many layers to life that most people will never understand, and there are still many more that I won’t either. If I can use my experiences to shed light on how the other side lives, that to me at least gives me continued purpose in what feels like a purposeless life. I’ve never been a particularly suicidal person, however I do have fantasies that death would be far easier than this.. But I refuse to give up. I’ll leave this earth when the universe decides my time here is up. Until then, hopefully this experience can reach someone that’s currently suffering and needs to feel a bit closer to someone.. I know how powerful it can be to be understood.. In a world where answers are the furthest thing from common, knowing someone truly understands you is the next best thing. 

I’ve been on an extremely intense health-kick/diet. For the past few months I’ve practiced anti-inflammatory diets that have lots of research to prove effective in chronic conditions, and you can guarantee I will do my best to keep at it. In the miraculous event I overcome this, it’s my promise that I will devote my life to raising awareness / helping others that are currently suffering from this. Hopefully that day comes, and I will be able to share a lot more promising words with people, other than just my story that’s based around suffering. Until then, I’ll be here doing my best to find a way around this devastating condition. 

If you’re currently struggling, newly diagnosed, or relate to anything I’ve mentioned, don’t hesitate to reach out. This story is so much bigger than just me. Millions around the world are suffering daily, & it’s important that they have a voice too. Please, please be patient. Try to be understanding. Try to listen and even if we may seem ungrateful at times, or constantly irritated, just know that in our hearts we are so appreciative. It’s honestly because of you that we’re still here fighting.. It’s way easier to give up than it is to fight through this everyday, so the fact we’re still here should magnify our efforts.. Because most days we don’t even have the energy to get out of bed, let alone try to enjoy/love life.

——

I close my eyes, and instantly I’m a child again. The beautiful warm air, coupled with a cooling breeze.. I smile. I’m smiling for real this time. Free from fear & worry — the days are filled with love and excitement. I can see myself running, there’s faded memories of the belief that one day I’ll make people proud.. maybe someday I will even do something extraordinary.. But then I open my eyes, and instantly, I’m surrounded by darkness. Reality opens the door. The pain is still there, my legs are still numb, my hands hurt, breathing is difficult. I’m scared. I’m laying in bed, crying on the inside. I want to be that child again. I feel like I’ve failed him. Looking back, my heart breaks at every little smile I gave, all the love that once existed within me.. Where did that little boy go? Why did I end up here? I used to be so beautiful and pure. I miss him. I close my eyes often to visit who I used to be.. Free from reality. Back when I didn’t have to smile in pain.