Marginalized Medicine

Something I have been dealing  with for a very long time is the critical impact of marginalization and dehumanization of a patient in the modern practice of medicine. On a surface level, Doctors need to take away the factors of an individual’s life in order to perform their job when they need to diagnose and prescribe medicine but more often than not this leads to a complete lack of empathy and respect for the patient and their experiences. The patient becomes a piece of a statistic, another number in a chart. They become the best fitting description and are plopped into that category haphazardly, all risks of misdiagnosis set aside. The patient no longer becomes a person experiencing an ailment but a problem to be solved, and they lose a sense of humanity. It is no longer important to shed that insight to find the true cause of the problem because it is too difficult to find! We don’t have access to the resources to diagnose easily, we don’t have access to the resources to properly improve our healthcare system…. yet here we stand as patients ourselves, trapped within a system of impoverished information that leads to the over categorization of an individual’s experience.Now, some Doctors go so far as to be set in what they know, and from that our experiences as patients are meaningless. Those Doctors instill anxiety in their patients which in turn manifests as new medical problems, and so the cycle begins. We become trapped by the attitude of our medical worker; happy helpful individual’s give you hope, while those who doubt your experience provide a basis for fearing the medical field in general. 

The fear of not being taken seriously leaves you raw and angry when the Doctor brushes your worries or pains aside, and you are left feeling ashamed and scared of sharing your state of affairs with anyone; if the professionals won’t take you seriously, who will? For those with chronic illnesses, or those undergoing diagnostic procedures that feeling can leave you terrified and isolated. When the Doctor does not listen to your lived experience because it doesn’t match what this statistic says or that text states it to be it feels like you are somehow no longer important as a human, as an individual; it feels like the Doctor thinks that you no longer have the right to be experiencing what you are experiencing because you don’t fit the grid. Unfortunately, those precious stats are created because people have problems and enough of them exist to coalesce into a pattern, not the other way around. It almost seems as though the label you are given ends up meaning more than the experiences you go through in your day to day life. As if you giving your best isn’t good enough because it isn’t producing their results. You feel trapped not only by your chronic illness but by the people around you, society itself. You cannot perform to the standards set by the so-called higher power and for that you are marginalized and with little respect. You lose value. You become less.

 

This morning I finally went in to my Doctor to apply for the Access Service at my university as well as ODSP (Ontario Disability Support Program) and my feelings are very raw still because it did not go well. After a year of treating me for Fibromyalgia she questioned the diagnosis. I had been diagnosed by a different Doctor last summer because she was on Maternity leave, and there had been no question there, and she never questioned to medicate me… but when it came to social assistance I had to prove that this was my last resort by having a small emotional break down in front of her because she questioned the diagnosis. She conceded at the end on writing Fibromyalgia on my school form (it had been on last year’s) after I explained teary eyed and panicked that I have anxiety with Doctors and diagnoses as well as Doctors taking me seriously after my old family Doctor and my entire family spent the first 20 years of my life saying everything was in my head– I was diagnosed with very bad case of Celiac disease at the age of 20 after switching doctors. I explained how hard it was to have social interactions in general because of my celiac and fibro. My migraine medication and fibro medication combined make me linguistically incompetent orally so I am either constantly in pain or not socially capable to function in a job setting. I haven’t felt so horrible before… It was bad enough spending years of my life not knowing what was wrong with me, being patient X, then being given a life long sentence of fibromyalgia (which I can manage for school– just not school and work), but then I had to be told I was potentially led astray, when I still feel and experience everything every single day. 

I have not felt so dehumanized and isolated in a single instance, so easily. Cast aside like a piece of dust on the wall. “Oh, you’re quality of life can’t be that bad! You’re only 22″ Is all I was feeling in that conversation, whether that is what she thought or felt or not. 

-Penelope

 

PS. This is also happening after I had an unexpected Celiac reaction on Saturday Evening (when I had one on Wednesday) so it was painful enough that I was screaming and whimpering uncontrollably for over an hour at the worst parts and am still in quite a lot of pain from it…. 

Unreliable but trustworthy

Something I have been trying to make more sense out of is the difference between reliability and trust. Many people may think that it is the same thing, but I beg to differ. I believe that these two concepts, though similar, stand alone in meaning. To me, trust is a matter of truth while reliability is a matter of follow through, and you don’t necessarily need one to have the other.

I personally value both of these skills differently because within my personal context of life, I strive to be trustworthy and am but am very often unreliable. To keep your word, to tell the truth, be honest with yourself and with others is to be trustworthy. To show up, not cancel last minute, keep in communication, etc is to be reliable. I value reliability in communication much more than physical reliability because I understand that circumstances with arise where you may not be able to follow through with plans, but if you communicate that you have done your part.

Communicating consistently allows for a demonstration of respect, loyalty and importance for who ever you are planning with. In my circumstances, I can’t always follow through with plans, and I have come to accept that as a fact. This doesn’t make me happy, I am not forced to stop making plans, but I do have to maintain a realistic self-awareness all the time and communicate that where necessary. Because of this though, I consider myself unreliable. It is the times that my health issues are debilitating, where I have no control over the situation, that I really consider myself unreliable. There is nothing I can do at that moment in time, but that doesn’t change the impact on the people around me and the things I need to do.

On the other hand, I pride myself on being trustworthy. I am a listener by nature, and have always been there to offer an ear to listen, a shoulder to cry on and a hug to hold. I don’t give unnecessary advice, I don’t force my opinion on others. I don’t share what you tell me unless it is something that directly involves me and concerns me alone, at which point it is my information and I have a right to share with someone to keep myself sane. I talk to a very few people about the deepest parts of myself, but for the most part, everyone else gets the very surface and no one knows who said what to whom. I’m not a gossiper. I’m not there to pick drama and start a fight. In those actions I consider myself truthful, honest and therefore trustworthy…

But just because you can trust me doesn’t mean you can rely on me being around. I don’t usually run away and hide myself from social contact, though it does happen. I usually get swept up in the busy nature of adult life and time flies before I can’t even cast a second glance. Or more often I will be physically unable to be around, which is usually the cause of my disappearing and being a hermit, but I am up front and honest about that.

Trustworthiness and reliability are two very distinct skills and I honestly think that people need to start recognizing that and acknowledging that difference. It would save a lot of hardship and pain when people have to maneuver the expectations that are bestowed upon you at every turn and stage of life.

My thoughts on soul-mates

Sometimes all it takes to find yourself or the half you feel you are missing, is to find that missing piece. Now I’m not talking about that sweeping majestic romance that tears you off your feet and flings you into the thoughtless careless flight of puppy love, I’m talking about finding the partner that was meant for you. I personally do believe in the concept of soul-mates, that there is someone out there who is just right for you, but I don’t believe we all are given the opportunity to find them in our lifetime.

There are so many people on the earth that it is nearly impossible for everyone to find them, but I think that there are ways to tell whether you have the chance to at some point in your life. I’ve personally always had this instinctive gut feeling that there was someone out there for me. I knew I would find him, and I knew what I was looking for. I had a list of characteristics of his personality and basic physical features that I always knew were just right for me. I used to pretend that because someone displayed some of these character traits they must be the right one! I would focus so much on those traits that I would ignore the rest of my gut feelings that screamed “no! It isn’t right! Stop it! It won’t last!”. I wanted that person so badly that I would be certain in my impatience that he would just show up the next day so I could live my happily ever after….

Then I realized that I had been imposing that lost on all the wrong people, that I had been impatient and dumb about my romantic choices, and that I needed to take a break and stop looking. I looked so hard for so long that I didn’t know how to stop looking, but I figured it out by distancing myself from the idea of relationships and smothering my own heart. I knew that I would find someone right for me, but that knowledge gave me dangerous rose coloured glasses. Yet, as soon as I stomped on those glasses and looked out with clear vision, I was met in the most unlikely situation of finding him. Finding the man I had known was right for me.

We clicked and sparked like wildfire from the moment we met. A short conversation at a party led to exchanging Facebook info, and plenty of very riveting conversations. We had planned for an evening hanging out, but the closer I came to the night the more my heart fluttered at the thought– which I would promptly stomp on and repeat to myself “Stop it! You are not allowed to talk yourself into thinking he is the right one like all the other silly times you’ve done!!”…. It turned into a date as soon as the evening began. It was the first time I had met someone who understood me so easily and deeply, without any idea of what I had been through. I kept my thoughts in check and have stayed grounded and realistic though, and still my heart hasn’t faltered. We keep communication open, we talk about everything and plan together, we are both seriously committed to eachother and understand that to make this work takes effort. We understand that life will change us, and that we can’t know what will come, but the universe has seemingly sought out to ensure we have a solid foundation. Everything with my health has flared up worse than it has for a good two years; my fibromyalgia, my migraines, my celiac disease, medication failures, I went through drug withdrawal in the transition to new medication, sickness (bad RTI), and that’s the tip of the iceberg of what we’ve actually been through together already.

I can’t say that love is easy, that love makes things go away, that love fixes anything, but I can say that it makes it so you aren’t going through all those ups and downs of day to day life alone- and if you feel like you’re missing a part of yourself, can make you feel whole.

The leafless tree

When you walk through the park in spring and summer, it is easy enough to tell when the seasons have been rough. Trees you’ve once known to be proud and strong are barren with the smallest bloom of new growth riddled around the roots and trunk. The limbs stand there, empty husks to the life they once knew. They have been beaten by the weather, resources or infestations, and you can see the scars. Though they are still alive and burst into life from the source, the dead limbs stand with no strength ready to fall at the lightest pressure. When we see these trees we don’t choose to burden them with weight by building off of them or climbing onto them because we know that something is wrong.

We see these trees with a small sadness for their loss, but more than anything we understand that they need to heal in their own time and require no pity. The need care and fair treatment, plenty of light and water.

I am like those trees but the piece that couldn’t survive the weather is inside, unseen to the naked eye. I am strong as I have regrown around the husks and grew vines to cover the dead limbs in a mask. I can survive and grow on my own, though I need to be careful what I weight myself down with. I don’t need pity, but I need care and consideration.

In my opinion, any mental or physical chronic illness functions in a similar way. Until you can regrow what you feel you have broken or lost in yourself, there is a feeling of being incomplete or weak inside. No one can see the effects of the environment on you, and your roots are firmly in the ground, but you cannot build when the rest of the structure of yourself is faulty. You cannot grow when you force yourself to bring life to the branches that are lost, you have to start again from the source, the roots of your very self before you can reclaim yourself, but you won’t ever be the same. Those dead limbs will always be there, shaping the way your new growth can take. They become a part of you, and as you grow into them, you begin stronger and stronger.

Theory: the physiological development of the spiritual self

I have spent most of my life researching this obscure, hard to define concept of “religion” or “spirituality”, have just graduated with a degree in religious studies, am working towards a double major in religious studies and linguistics before doing graduate studies in religious studies. I grew up in an agnostic household with familial Catholic roots, explored my own spirituality from the age of ten and have spent countless hours researching everything that wasn’t the abrahamic religions until second year university. I know much more about neo-paganism than any other tradition in a broad sense, and am now a Catholic Druid. I practice a syncretic form of Catholicism and Druidic neopaganism spending mist of my life as a Buddhist practitioner or neo-pagan Druid. I don’t speak Christian Vernacular, but I am beginning to understand it in pagan terms as time goes by.

My theory is one that I currently cannot prove, but have found strong evidence towards the possibility and is as follows:

There is a physiological aspect of the human being that is spirit (or participant in an energy field non reliant upon our physical substantial reality) that develops as a soul like any physiological part of the human anatomy or psyche, leaves our bodies at the time of death and turns into a spirit. Here the soul is defined as the organic substance that is in a state of growth and change, while the spirit is defined as the final state of a soul that no longer grows in an organic fashion and returns to the base energy from which everything exists. In the spiritual development of a soul, or the time in which a soul is able to grow during life, an individual will grow in conjunction to their natural physiological calendar, specifically, their neurological development. The likeliest source of the connection of an individual that allows them to sense the spirit which permeates all existence in our universe is developed in conjunction with or through the development of the frontal lobe.

My theory suggests the involvement of the frontal lobe in the development of controlling the soul’s interaction sigh the spirit because of the patterns displayed in human developmental patterns as well as sociological aspects indicating possible connections to this development. A soul will develop whether the individual interacts with the spirit. In the early development of children, as their higher function emerge (Freud’s 4-7 years old), they often demonstrate the ability to interact with the spirit in a way that later is over ruled by the next stage of development in reasoning and critical thinking. In the teenage years, individuals may begin to develop skills or question, as this is often a large period of growth. I am more familiar with young children as I have two young half sisters whom I have cared for often and have been teaching and tutoring elementary school aged children for the last 6 years in varying capacities. For adults, modern research has found that the final stage of development of the frontal lobe occurs in the early to mid 20s, which is concurrent with the occurrence of spiritual awakening or exploration.

I have a fair amount of research that I can apply to this go support my theory, but I have not done adequate research for opposing this theory and have not pooled together a credible bibliography, so for the moment this theory will remain an idea that is open to research and scrutiny! In any case, I like my theory as it does explain a great deal of sociological confusions surrounding religious traditions from an anthropological and sociological point of view.

I run from nothing but myself; I fear nothing but myself

Sometimes I feel like I’m lost here, like this world is a dream and someday I will wake up and find myself far away from here. It’s funny because you might think that I am running alway, wishing to escape, but I’m not. I know that my life as it is now is real, that it is no dream, and no matter how much I might wish it, I most certainly won’t be waking up. I’m scared, out of place, in fear of myself and my life itself. I fear that which I’ve always been, that which I’ve experienced, that which I may one day face. I feel alone and lost, even in company. I feel like a stranger in my skin, and I always see more than my poor eyesight allows. I’ve sought out answers to my questions and with each answer I’ve asked five more questions, found myself more and more helpless to the truth.

When I am awake, my thoughts stir with life and ideas of a greater picture for humanity, one that needs more than I think I can give. I feel disheartened and heavy. I feel tired, and I wish beyond belief that this reality wasn’t mine. I wish that I could give it away, that I could turn my back and run… Run and run and run until I’ve run so far that I have run from myself. There is nothing I fear more than myself. I fear truth because I have grown to doubt what I know from being surrounded by disbelief… Unfortunately, knowing people often find disbelief in things that do exist doesn’t make it any easier to exist through. Some say that I’m strong, some say that they take inspiration from me, but I don’t believe them… I know it is the truth, but I can’t bring myself to believe them, because I was taught to question myself. I’ve grown so used to others not believing in me that having support is foreign and scary.

If I could turn the clock back, I wouldn’t, but instead, I have been pretending the clock doesn’t exist. I know that I feel surreal because I have continued true on my path through life when others would say I wasn’t good enough, or would say my pains or illness were all in my head… Maybe it is from this that I want to wake up from. Maybe I don’t want to face everything I’ve been through, because that would mean admitting it happened. Admitting it hurt me, left me more scarred and maimed inside than I want to admit. I can’t avoid the surface scars– the neurotic tics, social anxieties and problems with control– those are always present to me and those around me, but the deeper ones, the places I’ve hidden away from even myself, those I don’t want to see. I don’t want to be broken inside, I want to be that ideal picture of greatness that was set for me to strive for… But that ideal doesn’t exist, and I feel like if I admit that, I will be weak. If I admit what I’ve been through, what I’ve really been through, I won’t be accepted, I won’t be liked, I will be shunned, called names, and I will be forgotten.

I panic when I am alone because I am faced with myself. I’m faced with a lifetime of memories that are so different than anything I had thought was normal. I’m faced with memories that predate this life in this body. I’m faced with glimpses of my future that I’ve known since I was little, and have one by one come to pass. I’m faced with my heart, my ideas, my opinions… And I want to run away from them… But with each step I take in escape, I am face to face with everything and want to cry.

As much as it pains me though, I will never back down or give up. I take everything my life has in store, and I continue, I move forward and I go on. The only solace I have found in this emotional and physical burden is my spirituality and intellect. Where others can find peace or relaxation in video games, art, reading or such, my health has kept those from me. I still enjoy them, but I can’t guarantee when I can or can’t do anything– but even when I can’t understand the world around me, even when I can’t speak or read or interact, I can think and exist in mind and spirit. That is my only certainty in this life. Night after sleepless night I escape into myself and find peace in the knowledge that I am here with a purpose. I am a messenger, here to iron out as many wrinkles as I can, and teach people to prevent more wrinkles than are needed in our societies. I think about what I have accomplished and plan for the future with hope that things will work out in such a way that my plans can work.

I am a dreamer, a thinker, a creator and a doer… And it scares me. Not because I doubt my own capabilities, no. It scares me because I know what I can do it and I do it without any doubt. Though I run away from my emotions, I am real and driven in ways that surprise everyone who doubts me. I have been and continue to do everything I set my mind to and succeed– but my drive and accomplishments do nothing to wash away my pain. As hard as I push and fight in my uphill battle, I’m still running away from the ghosts that haunt me too. They scare me so deeply, and I don’t know how to face them. I don’t know if I want to face them, though I know eventually I will need to. For now, I will keep running… And someday I may muster the courage to face myself… Because there is nothing in this world scarier than myself…

–Penelope

PS. Insomnia doesn’t make running away from yourself any easier because everyone else is asleep while you sit in bed with your eyes closed, willing sleep for hours on end, trapped in a dark room with nothing but the shadows peaking in the reflections of your mind.

Poem: an endless fog in my mind

While I wait to go forward the night and darkness over take me
I am lost to the abyss and stand perilously close to the edge
Peering over the side I find myself stranded and lonely
Hands reach towards me to pull me away and grasp the nothingness within
Sullen and worried the stand as wisps so far away in the dense fog
Yet again I look around not knowing what I see or hear or touch
I am stranded confused blind and dumb waiting for something else
I’m lost and teeter dangerously closer to the edge and want to fall
Heavy and leaden I am pulled from afar down into the gruesome depths
I don’t know where I’m falling or how long I will have to fall
I don’t know if I will stand again or if I am lost to the dredges and smoke
Maybe I am not falling but floating motionless in the expansive void
I contemplate how I came to be trapped in this listless colourless fog
Help me
I want to make my body stop and rest in this fog under an eternal shroud
Too tiring to act like I am not addled or lost to this confused state
Sitting alone the fog settles in around me with no hands grasping me
I feel warm and peaceful yet I’ll at ease in this void within my mind
Maybe I could learn to exist here and forget that I am more
It would be so easy to lose myself in the fog so maybe I never truly was
There is no past present or future in the swimming cottony fluff
There are no plans needs wants or expectations when I am lost
There is no certainty of knowledge or flow of the streams of time
There is only me
Alone
Enshrouded
Unreal
I am the nothingness that twirls around and fills my very being
There is no reality in this dreamy cloudy weightlessness
I am not here nor there nor anywhere
There is just an endless fog in my mind

I hate medication

It is as simple as this: I hate medication.

I am currently unable to sleep because my acute migraine treatment medication has reacted with the super uncomfortable tingly sensations reaction everywhere rather than make me sleepy like it has previously. My last meds for migraine and FM treatment worked for a month before failing, and the ones before that to treat just my migraines gradually stopped working after 3 months of use and failed completely after 7 months of use. Pain medication doesn’t help my FM or my migraines, and I can’t swallow anything during a celiac reaction so relief from that is non existent. My body metabolizes medication quickly and normalizes to it without fail, and I’m worried that I will be stuck on an endless medication trial and error period with brief respite followed by overwhelming pain as the medication fails and my body is no longer used to being in that pain all the time. When I was in the hospital with appendicitis, I was given a narcotic that has since aggravated the nausea/vomit response in my body that I had not had to experience in conjunction with migraines before hand. My old family doctor had me on estrogen birth control with my aura migraines for four years, and it took switching to a new doctor to figure out why that caused constant migraines and neurological symptoms.

Medication doesn’t solve the issue, it just puts a laced bandaid over the issue at hand and causes more problems than it seemingly tries to fix.

Vitamins are useful when paired with a balanced diet, but those and allergy medication are the only pills that have actually had a positive impact on my body.

My rant is done.

An update after radio silence

It’s a wonder how little you need to escape when you have found yourself in a safe place, but when you’ve lived on the run, where do you go to find strength? Is it somewhere outside, or is there a way to find that inner strength used to run away. With inertia gone, all those fears you run from come crashing inwards, a surging tidal wave over your heart and it feels like you’re drowning.

I’m in a home where I am safe from conflicts surrounding myself, where I am not a burden, where I feel that I am loved for who I am for the first time in my life, and in the peace of mind it brings I am lost. My health is shaky, my medications have failed, I’ve had to drop out of performing in the choir I’ve rehearsed with all year the week before performances, I’m searching for new employment because the elementary school I worked at is done for the summer, and I’ve just finally recorded from a terrible respiratory tract infection that had me bed ridden for most of last week. I had to cancel plans for today last minute because I woke up to a throbbing, nauseating migraine after experiencing the scariest rare auras again for the first time since November on Friday (where I lose fine motor control in my hands and mouth and can’t speak though my thoughts are uninhibited). I have been blessed with the most patient and loving of partners and love my boyfriend dearly for his constant support and strength; and the hopes I once had of finding my safe home taking more of my problems away and making life easier have all been burst. Living in a healthy home has certainly made my life better, but in no way has it become easier… And that makes me wonder if my spirit will ever find respite from the constant tired and worn away feelings… Whether I will struggle forever, or whether someday something will ease up.

I haven’t faced the pain from giving up on the things I love because of my health problems yet, and I know I have bottled it up. Missing my choir’s performances has left me feeling hollow and empty in my creativity, I’ve given so much of what I love up over and over that it feels as though the universe is trying to teach me to not care… If I don’t care, I won’t lose anything, because there won’t be anything to lose in the first place. It isn’t a healthy way to look at it, but I feel more broken now that I’m in a safe place than I ever did trying to escape from unhealthy living situations. In safety I’ve been given the chance to see everything I’ve hidden away and bottled up, and it is daunting to find in myself. The pain from my migraine has worsened this sensation as it cements the immanent nature of the effects in my day to day life that I have had to deal with for the last four years now of chronic migraine and eight for fibromyalgia. I’ve spent my life fighting for each day, and I’ve succeeded, but at a cost. The cost is my own self, because the longer I fight, the harder it is to remember why I’m fighting in the first place, the easier it is to see where I have failed, and in my new experience with a healthy partnership, the harder it is to be alone with myself especially in times of flare ups or illness.

I’m not running from anything harmful anymore, I have the direction planned fit my life, I’m taking those necessary steps, but it’s hard… Incredibly hard.