I promise I will finish the last part of the mini series very soon, but I have noticed a large increase in views on my blogpost, When a Christian Meets Chronic Illness, from December 2018, over the last few days. So I have decided to write more about that today. I have been encouraged to continue to share my journey and life from my point of view, and am filled with joy that my words have been able to help so many. Today’s post is inspired by my cousin’s fascination of my odd brain phenomenons (he is also, by the way, non neurotypical), my sister who cannot express what she experiences on a daily basis as someone with Autism who is nonverbal, my own obsession with the human psyche and trying to understand why mine is so complex, my neurologist who continues to fight to find a way to decrease my seizures and migraines, and the new medication added to my daily regimen that seems to be promising.
I am a normal adult, at least from what meets the eye. I have a Bachelor’s Degree in Journalism and a Master’s Degree in Organizational Communication. I have two steady jobs, one that involves teaching English to children overseas, and the other is caring for a family member as a home health aide. I am an extrovert and love to be out and about, exploring, connecting with people and the world around me. The more people I get to know, the better. I have been married almost four years now, own a home, and have a few fur kids. I have some awesome best friends that I have been blessed with who I catch up with regularly, even though we can’t see each other often because life becomes busy after college days. I have been a supervisor before and miss my job at Alden Library fondly. The reason I left that job was because of a family emergency that required me to leave Athens to move back to Columbus a few years ago (you can find more on this in older posts). I am blessed and I have a fulfilling life.
Nevertheless, there is a lot more to me than meets the eye. I have a lot going for me, but it isn’t always easy. There are many days where I cannot work because seizures or migraines leave me debilitated for the rest of the day. I am on 6, sometimes 7, different medicines a day to control my several illnesses and disabilities, such as Poly Ovarian Cystic Syndrome, Anxiety, Epilepsy, Chronic Migraines, Sensory Processing Disorder, etc. I have a service dog that can sense and smell a scent (undetectable to me) to alert to migraines, seizures, or when my blood sugar drops too low thanks to occasional insulin issues with my PCOS hormonal imbalance. A lot of my illnesses are caused by the other, or make at least aggravate others. So sometimes having a bad migraine causes a slew of seizures. Or whenever my hormones are especially out of whack from PCOS, I can have bad seizures. Anxiety and panic attacks can happen before or after a migraine or seizure. Having heightened senses can make me prone to anxiety. Is that extreme itching seasonal allergies or an allergic reaction to the new medicine? Am I tired because of one of my conditions or because of how many medications I take? I will never know. As much as I love to do things and be out in public, it is also draining, especially going to the grocery store. For some reason in particular, the grocery store can cause major sensory overloads and sometimes even complex partial seizures, where I lose awareness of where I am and am unable to move, respond, or do anything for a bit. I know that I am not alone in simple outings being a challenge to those of us with disabilities. There is something called the spoon theory that explains how chronic conditions cause fatigue and emotional drain, which is why things that don’t bother “normal” people can be exhausting for us. Yeah, it’s bleh.
My husband the other day asked me which illness would I choose to have removed if I could have one completely removed in an instant. It was hard for a second, but I think I would have to choose the Epilepsy or chronic migraines because those seem to affect my independence and ability to function day to day the most. Although, sometimes I would love to have normal sensory perceptions, rather than heightened sensory perceptions. Yet at the same time, if I were healed of my sensory processing disorder suddenly, I don’t know what I would do with myself because it has become a part of who I am. While sometimes I hate it, other times it benefits me (more on that later). I can’t say that about any of my other conditions. I feel like most of us with chronic illnesses and/ or disabilities would love more than anything to be normal. In fact sometimes I cry out to God asking him why I have to be “weird”. I ask him why can’t I be normal so that I can be able to do more for him, because I feel inadequate. People like myself feel like we are burdens to everyone around us, even our doctors, especially if what we have can’t be solved easily. But for some things, like Autism, a cure isn’t always wanted. Rather, understanding and compassion instead. I know many with Autism who are outraged by the notion that their “Autism” is something that must be eradicated, rather than accepted. Autism changes the way someone experiences the entire world, but it doesn’t make them any less of a human being than anyone else. Autism is one of many conditions misunderstood and stigmatized, much like how mental health is stigmatized. Trust me, I know. I have been shunned by many for not fitting the normal mold, and many wonder how I can still have chronic conditions even though I have prayed for healing and believe in Jesus. I believe God has a purpose in everything and that if he doesn’t heal me, there is a reason for it. It is still a process, but I am realizing more and more everyday that God can use any of us and that his will is greater than we can ever imagine. I may not be as capable as many others, but my strength comes from the Lord and with Him, anything is possible.
Back in September, I had a wonderful conversation with a cousin of mine. We talked about everything from life, to TV shows, and our chronic conditions. He is on the spectrum, so he has Sensory Processing Disorder like me and understands how it is a unique aspect of what makes us, “us”. But, he doesn’t have epilepsy, so he was curious as to what some of my seizures look like. Medication has controlled certain types I used to have, while some I still continue to have. As I explained what I feel and experience during seizures, he was mesmerized. He wanted to hear more. Of course, he didn’t like that seizures are bad and can harm me, but some of the ways they manifest themselves are strange, and that fascinated him. Heck, my own brain both fascinates and scares me too. Like I wonder what the heck is going on up there and why so much energy is firing off all of the time. I bet his reaction is what my neurologist is thinking to himself when I describe my symptoms, because I am a weird case where my brain looks completely normal on the MRI images. I know doctors have to hide their emotions and be stoic, but I really wish I knew the thoughts of my neurologist when working on my case. Or maybe not, haha. Sometimes when I have complex partial seizures things feel surreal, as if I am watching a movie of myself and everything around me is suddenly not real, or it becomes unfamiliar. During those types of seizures I am unable to react to my environment briefly, and afterwards I feel a rush of fear and then extreme sorrow. Occasionally, instead of sorrow I feel a huge burst of intense euphoria, like I am suddenly on top of the world. Those were some of the worst seizures I ever had, and I am thankful that medication has caused those to cease. The seizures that cause bad smells such as the smell of fire, have also gone away. And I haven’t fallen down the stairs ever since I have been on medication. But I still have myoclonic seizures and absence seizures a lot, and full blown grand mal seizures (in my sleep). Myoclonic seizures are when your body muscles decide to contract very abruptly, causing jerks and spasms. Sometimes they’re barely noticeable, and can only be felt. Other times they can be seen by everyone and you end up throwing whatever you had in your hands (I have spilt many drinks thanks to this. Thankful for my wooden floors). Absence seizures happen when I am doing something then suddenly I freeze and am unaware and unable to respond, and then sometimes I will resume what I was doing without even realizing what happened. Often what helps me realize I had one is the conversation I was engaging in suddenly sounds like gibberish, or the person with me notices and points it out. Like a few weeks ago I was pulling a hoodie off, and as I began to take it off, I had one. So for like 30 seconds I was frozen with my arms halfway in the air, and once it was over I finished taking my hoodie off. My husband Robbie was like you had a seizure and I was like “oh I did?” My sleep seizures unfortunately involve full on convulsions and sometimes I stop breathing. This is where sleeping with my service dog becomes a life saver. If she can’t get me up she will wake up my husband.
Another thing my cousin and I talked about was the fact that I have Synesthesia, which is rare but really cool. Look it up ;) I like to keep how I experience it a special secret that I only share if I know you. There are many forms of it, and I think it is awesome. I think it is one of the coolest things about me, honestly. And to think when I first noticed it I was about five or six and I thought everyone experienced it until I told Robbie about it one day and he was like “huh?!” and then my former therapist excitedly told me I had Synesthesia. I love it, I think it is very fun and it is one of the reasons I don’t want to ever lose my extreme sensory perceptions. So about this Sensory Processing disorder I’ve mentioned numerous times, let me share with you what it is like to be someone who has it, as this is what makes me not neurotypical. Sensory processing disorder is exactly what it sounds like; it means my brain doesn’t process information it is given by my senses in a normal way. For some, it means that their brain under reacts to sensory stimuli, whereas in my case, my brain OVER reacts to stimuli. And I mean truly overreacts. I can hear so many sounds at once and they all sound like they are at the same volume, which makes being in loud spaces really hard sometimes. In the first town home Robbie and I lived in, we were the only ones that lived in our section because it was a new build. There was only one other person who lived down the road. In the winter I would wake up in the middle of night every night whenever the people who lived down the road’s heat pump kicked on. I would wake up when I heard ours too, but I could hear theirs fairly well too. Now I have to sleep with white noise because I can hear the cars from the main road where I live, even though I live several side streets away from the main road. I can’t handle the sound of any sort of chewing, I have to put ear buds in or find a way to drown the sound out. One time at a restaurant there was only one other person there and I could hear her eating with her mouth open, and with every chew, I felt as if someone were stabbing me in the ears. It was so painful, but I know it wasn’t her fault so I decided to extremely focus on something else in order to not lose my mind.
Along with sound, smell is also over reactive. I cannot stomach many food smells, which I believe is partially why I am such a picky eater. If someone has really strong perfume on, sometimes I feel as if I am going to throw up or can’t breathe. I also know what every person I know smells like, their natural smell. I can tell if someone hasn’t showered in a week (gag) and I can even tell if someone is sick based on their smell. I could tell you who was my friend and who wasn’t if you blind folded me and had me smell their neck. Weird right? I guess I am part dog (just kidding). My eye sight isn’t 20/20 anymore but whenever I get my glasses prescription updated, I am overwhelmed by how clear I can see things. Like I can see the tiniest detail in the leaves on the trees, and each carpet fiber on my parents’ carpet. Colors can be overwhelmingly bright, but I love it at the same time. Touch sometimes feels really good, or really, really painful. Like sometimes a light touch to my arm feels like a thousand needles pricking my arm all at once. Or it can feel so good that it takes your breath away. There is one thing I feel more strongly than others, it is the feelings of those around me.
I am a normal adult, at least from what meets the eye. I have a Bachelor’s Degree in Journalism and a Master’s Degree in Organizational Communication. I have two steady jobs, one that involves teaching English to children overseas, and the other is caring for a family member as a home health aide. I am an extrovert and love to be out and about, exploring, connecting with people and the world around me. The more people I get to know, the better. I have been married almost four years now, own a home, and have a few fur kids. I have some awesome best friends that I have been blessed with who I catch up with regularly, even though we can’t see each other often because life becomes busy after college days. I have been a supervisor before and miss my job at Alden Library fondly. The reason I left that job was because of a family emergency that required me to leave Athens to move back to Columbus a few years ago (you can find more on this in older posts). I am blessed and I have a fulfilling life.
Nevertheless, there is a lot more to me than meets the eye. I have a lot going for me, but it isn’t always easy. There are many days where I cannot work because seizures or migraines leave me debilitated for the rest of the day. I am on 6, sometimes 7, different medicines a day to control my several illnesses and disabilities, such as Poly Ovarian Cystic Syndrome, Anxiety, Epilepsy, Chronic Migraines, Sensory Processing Disorder, etc. I have a service dog that can sense and smell a scent (undetectable to me) to alert to migraines, seizures, or when my blood sugar drops too low thanks to occasional insulin issues with my PCOS hormonal imbalance. A lot of my illnesses are caused by the other, or make at least aggravate others. So sometimes having a bad migraine causes a slew of seizures. Or whenever my hormones are especially out of whack from PCOS, I can have bad seizures. Anxiety and panic attacks can happen before or after a migraine or seizure. Having heightened senses can make me prone to anxiety. Is that extreme itching seasonal allergies or an allergic reaction to the new medicine? Am I tired because of one of my conditions or because of how many medications I take? I will never know. As much as I love to do things and be out in public, it is also draining, especially going to the grocery store. For some reason in particular, the grocery store can cause major sensory overloads and sometimes even complex partial seizures, where I lose awareness of where I am and am unable to move, respond, or do anything for a bit. I know that I am not alone in simple outings being a challenge to those of us with disabilities. There is something called the spoon theory that explains how chronic conditions cause fatigue and emotional drain, which is why things that don’t bother “normal” people can be exhausting for us. Yeah, it’s bleh.
My husband the other day asked me which illness would I choose to have removed if I could have one completely removed in an instant. It was hard for a second, but I think I would have to choose the Epilepsy or chronic migraines because those seem to affect my independence and ability to function day to day the most. Although, sometimes I would love to have normal sensory perceptions, rather than heightened sensory perceptions. Yet at the same time, if I were healed of my sensory processing disorder suddenly, I don’t know what I would do with myself because it has become a part of who I am. While sometimes I hate it, other times it benefits me (more on that later). I can’t say that about any of my other conditions. I feel like most of us with chronic illnesses and/ or disabilities would love more than anything to be normal. In fact sometimes I cry out to God asking him why I have to be “weird”. I ask him why can’t I be normal so that I can be able to do more for him, because I feel inadequate. People like myself feel like we are burdens to everyone around us, even our doctors, especially if what we have can’t be solved easily. But for some things, like Autism, a cure isn’t always wanted. Rather, understanding and compassion instead. I know many with Autism who are outraged by the notion that their “Autism” is something that must be eradicated, rather than accepted. Autism changes the way someone experiences the entire world, but it doesn’t make them any less of a human being than anyone else. Autism is one of many conditions misunderstood and stigmatized, much like how mental health is stigmatized. Trust me, I know. I have been shunned by many for not fitting the normal mold, and many wonder how I can still have chronic conditions even though I have prayed for healing and believe in Jesus. I believe God has a purpose in everything and that if he doesn’t heal me, there is a reason for it. It is still a process, but I am realizing more and more everyday that God can use any of us and that his will is greater than we can ever imagine. I may not be as capable as many others, but my strength comes from the Lord and with Him, anything is possible.
Back in September, I had a wonderful conversation with a cousin of mine. We talked about everything from life, to TV shows, and our chronic conditions. He is on the spectrum, so he has Sensory Processing Disorder like me and understands how it is a unique aspect of what makes us, “us”. But, he doesn’t have epilepsy, so he was curious as to what some of my seizures look like. Medication has controlled certain types I used to have, while some I still continue to have. As I explained what I feel and experience during seizures, he was mesmerized. He wanted to hear more. Of course, he didn’t like that seizures are bad and can harm me, but some of the ways they manifest themselves are strange, and that fascinated him. Heck, my own brain both fascinates and scares me too. Like I wonder what the heck is going on up there and why so much energy is firing off all of the time. I bet his reaction is what my neurologist is thinking to himself when I describe my symptoms, because I am a weird case where my brain looks completely normal on the MRI images. I know doctors have to hide their emotions and be stoic, but I really wish I knew the thoughts of my neurologist when working on my case. Or maybe not, haha. Sometimes when I have complex partial seizures things feel surreal, as if I am watching a movie of myself and everything around me is suddenly not real, or it becomes unfamiliar. During those types of seizures I am unable to react to my environment briefly, and afterwards I feel a rush of fear and then extreme sorrow. Occasionally, instead of sorrow I feel a huge burst of intense euphoria, like I am suddenly on top of the world. Those were some of the worst seizures I ever had, and I am thankful that medication has caused those to cease. The seizures that cause bad smells such as the smell of fire, have also gone away. And I haven’t fallen down the stairs ever since I have been on medication. But I still have myoclonic seizures and absence seizures a lot, and full blown grand mal seizures (in my sleep). Myoclonic seizures are when your body muscles decide to contract very abruptly, causing jerks and spasms. Sometimes they’re barely noticeable, and can only be felt. Other times they can be seen by everyone and you end up throwing whatever you had in your hands (I have spilt many drinks thanks to this. Thankful for my wooden floors). Absence seizures happen when I am doing something then suddenly I freeze and am unaware and unable to respond, and then sometimes I will resume what I was doing without even realizing what happened. Often what helps me realize I had one is the conversation I was engaging in suddenly sounds like gibberish, or the person with me notices and points it out. Like a few weeks ago I was pulling a hoodie off, and as I began to take it off, I had one. So for like 30 seconds I was frozen with my arms halfway in the air, and once it was over I finished taking my hoodie off. My husband Robbie was like you had a seizure and I was like “oh I did?” My sleep seizures unfortunately involve full on convulsions and sometimes I stop breathing. This is where sleeping with my service dog becomes a life saver. If she can’t get me up she will wake up my husband.
Another thing my cousin and I talked about was the fact that I have Synesthesia, which is rare but really cool. Look it up ;) I like to keep how I experience it a special secret that I only share if I know you. There are many forms of it, and I think it is awesome. I think it is one of the coolest things about me, honestly. And to think when I first noticed it I was about five or six and I thought everyone experienced it until I told Robbie about it one day and he was like “huh?!” and then my former therapist excitedly told me I had Synesthesia. I love it, I think it is very fun and it is one of the reasons I don’t want to ever lose my extreme sensory perceptions. So about this Sensory Processing disorder I’ve mentioned numerous times, let me share with you what it is like to be someone who has it, as this is what makes me not neurotypical. Sensory processing disorder is exactly what it sounds like; it means my brain doesn’t process information it is given by my senses in a normal way. For some, it means that their brain under reacts to sensory stimuli, whereas in my case, my brain OVER reacts to stimuli. And I mean truly overreacts. I can hear so many sounds at once and they all sound like they are at the same volume, which makes being in loud spaces really hard sometimes. In the first town home Robbie and I lived in, we were the only ones that lived in our section because it was a new build. There was only one other person who lived down the road. In the winter I would wake up in the middle of night every night whenever the people who lived down the road’s heat pump kicked on. I would wake up when I heard ours too, but I could hear theirs fairly well too. Now I have to sleep with white noise because I can hear the cars from the main road where I live, even though I live several side streets away from the main road. I can’t handle the sound of any sort of chewing, I have to put ear buds in or find a way to drown the sound out. One time at a restaurant there was only one other person there and I could hear her eating with her mouth open, and with every chew, I felt as if someone were stabbing me in the ears. It was so painful, but I know it wasn’t her fault so I decided to extremely focus on something else in order to not lose my mind.
Along with sound, smell is also over reactive. I cannot stomach many food smells, which I believe is partially why I am such a picky eater. If someone has really strong perfume on, sometimes I feel as if I am going to throw up or can’t breathe. I also know what every person I know smells like, their natural smell. I can tell if someone hasn’t showered in a week (gag) and I can even tell if someone is sick based on their smell. I could tell you who was my friend and who wasn’t if you blind folded me and had me smell their neck. Weird right? I guess I am part dog (just kidding). My eye sight isn’t 20/20 anymore but whenever I get my glasses prescription updated, I am overwhelmed by how clear I can see things. Like I can see the tiniest detail in the leaves on the trees, and each carpet fiber on my parents’ carpet. Colors can be overwhelmingly bright, but I love it at the same time. Touch sometimes feels really good, or really, really painful. Like sometimes a light touch to my arm feels like a thousand needles pricking my arm all at once. Or it can feel so good that it takes your breath away. There is one thing I feel more strongly than others, it is the feelings of those around me.
So why do I consider my sensory processing disorder a part of who I am and something I don’t want to ever give up? Well because it does have its benefits. Music is incredible and when it is a song I enjoy, I can feel it through every sense receptor on my body. The sensation I get during a great song is indescribable, but I love it. I get chills, I get a wave of pleasure, and an extreme rush of joy, and then relaxation. Also some smells also bring me great joy too. Like the smell of chlorine, which reminds me of swimming, one of my favorite things to do. The smell of my dogs (not the gross wet dog smell, the smell of their skin) and my husband’s natural smell, give me a sense of comfort and security. The scent of Downy scent beads (I am allergic to the fabric softener itself) helps me sleep at night because of the memories the smell releases. Oh and the feeling I get when I am around people I care about, is perhaps the best aspect of sensory processing disorder of it all. Just being around friends catching up, gives me HUGE rushes of euphoria. Sometimes it is so intense I feel like I am going to faint or explode. Being around people I love and who love me too is just amazing, and being able to feel that love on a different level, it is, well, amazing. I wish I could always be around my friends and loved ones because the feeling of love, the actual feeling of mutual love (And I mean all forms of love, not just romantic) is amazing. It shows me how God intended relationships to be. Full of love, respect, gratitude, and pleasure.
Lastly, I will touch on how having chronic illnesses affects how we interact with others. We want others to like us for who we are, and to be our friend because they enjoy being around us and not because they feel they have to. I have been around people who pretend to like me, and I can feel it. So please, don’t pretend. It is okay if you don’t like me, I can respect that. I am the type of person who wants to be liked by everyone. I sometimes break the norm by befriending doctors, waitresses, dentists, ect. I go through great lengths to try to read everyone and see how they feel about me. But something I have been learning through life is that not everyone will like you, no matter what you do. And that is okay. You just keep moving forward. I am blessed to have a lot of people in my life who like me for who I am, and I love them each for who they are. Those of us with disabilities just want to be treated like anyone else, honestly. Thank you for taking the time to see what life is like for someone who isn’t “normal”. If I haven’t scared you away and you want to continue being my friend, then I value that more than I can ever say. And if I did scare you away, that is okay. I realize it is a lot of be friends with someone who comes with as much baggage, so to speak, as someone like I do. Either way, I wish you blessings and the best. Here is some scripture for you to think about <3
Edit: I forgot to add the new medicine I'm trying for my seizures has made me itchy, but it seems to be calming. Like I haven't been this calm since pre covid19, so I'll take the extra chill affect.
And now these three remain: faith, hope and love. But the greatest of these is love. 1 Corinthians 13:13 NIV
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