Saturday, August 15, 2015

My Summer: An Existential Crisis Caused By Health Issues


(Picture Caption: The only thing I seem to do well this year- Snuggle my nephew to sleep.)

A fellow Aspie and I were discussing how we tend to have an existential crisis once a year or more. Most people in their lifetime average 1-2, if that. My husband can verify that in these moments I re-define the very fabric of my self, beliefs and the foundations of my life. Autism already creates isolation in the way we perceive and understand the world. Rae, my friend, gets it because she also has Autism/ Aspergers. My husband travels often with me into the odd way I see the world and so does my best friend. They get me because I am constantly explaining and I share everything with them. I count this as a huge beauty in my life. Sometimes, though, it is so nice to talk to someone who shares my brain perceptions without having to explain. While Rae and I have different Keirsey temperaments and very different ways of living in the world our brains share the commonality of Asperger's Syndrome. The regular intervals of existential crisis are rough on us, but each crisis brings us further into enlightenment, understanding and questioning. The refreshing bit of it is that we are never stagnant. We are constantly re defining our value, purpose and meaning. It's hard and seems unfair at times but it also has it's own beauty. No one makes life harder on us than ourselves. And there is substantial evidence that existential depression does happen often in gifted individuals: http://sengifted.org/archives/articles/existential-depression-in-gifted-individual

This year's crisis started out in January when I knew I could no longer ignore my looming health issues. Bloodtests would be on the horizon with results I was familiar with and treatment that would be long and slow. However, I did not realize how far gone I was and how much more serious my blood levels were than usual. Currently, I am eight months into treatment without a current end in sight. I was threatened with transfusions a couple times but with the help of a few different people (doctors, naturopaths and friends) I managed to raise my levels these four months enough to keep "improving." My Ferritin went from a 2 to a 5 in eight months. I no longer feel like I am dying with every step but this took a toll on my physical self and my inner self. Google a level 5 Ferritin, which is my "IMPROVED" self, and a long list of symptoms and severe exhaustion is the norm. This is me feeling "better." Amongst rapid hair loss and greying, brittle yellow nails from loss of blood to my extremities, heart pain, bad skin from lack of oxygen and weight loss in all the wrong places, I have also had to face a level of stagnancy that even a cat personality finds annoying. I love leisure. I have the capacity to stay in bed for hours in bliss or curl up in a corner and not move until my bladder pushes me out of my relaxation mode. I have found that even for my feline self, eight months of "taking it easy" has taken it's toll.

The worst part of it is, it feels like it should be nothing. I look at my beautiful fulfilling life with many of my dreams coming true and I beat myself up for feeling so crappy. When my naturopath saw my blood results two months ago she asked, "How are you sitting here right now? Most people with these levels would be hospitalized or in bed all day? I have had borderline low levels before and I felt like crap but it was never as low as yours. This affects everything from the way your hormones work to your inner organs to your heart which is your very essence of health, to your skin and bones. Your body is going through deprivation. No wonder you feel like weeping all the time." When she said that I felt relief. I tend to be a trooper even if I know something is wrong until the facts are staring me in the face. Then I allow myself to feel it for a few hours. It took all my strength not to break down into gulping sobs which would not have done me any good anyway because then I would not have been able to breathe. I can't even cry properly.

Her statement was validating but the story I tend to tell myself is different. "It's just blood," I tell myself, "I just look old. It's something that can IMPROVE. It's not like I have a condition that can't be cured. It's something on going but temporary in it's extremity. It's a good lesson in patience perhaps? I still have all my body parts functioning. It's slowly improving. It is only affecting your looks and your capabilities...it could be so much worse. Get. A. Grip. Everyone is sick of hearing about it. When they ask if you are doing better they want to hear a yes. After 8 months they deserve a resounding YES. They don't want to hear that while you are steadily climbing up in degrees of improvement it is not enough to warrant much of a change in you. Just pretend. You are thirty- one not eighty. You at least have youth on your side to recover. Focus on the positive." That is basically what I tell myself but deep down I know I can't pretend with those I love. While focusing on the positive is good practice, it sometimes also contributes to a lack of facing what is flawed in front of us.

This summer has been especially hard in the fact that it's not hard at all. That doesn't make sense does it? It has been a beautiful summer with beautiful people and wonderful distractions. Inside I feel dead. Not in a emotional way, but in a energy seeping "I want to do this but I really can't" sort of way. Usually in the summertime my cousins show up. My sister and cousins are around a decade younger than me. Because of my Asperger's Syndrome I can usually relate to them very well and we have tons of fun together. This summer I was excited because my one cousin is living here over the summer with my sister.  I pictured many moments of us sharing time at each other's homes. I pictured conversations over good food and sharing my kid's beautiful daily. I pictured our old energetic city trips with immense laughter and moments so high with enjoyment they felt chemically induced.  However, how it has played out has been different then what I was expecting. I can't do what they can. I can't go on small walks let alone hikes. I can't go to noisy concerts (on my best of days I couldn't before either but I REALLY can't now) or cheer at marathons they participate in because the heat takes the last thready bits of my breath away. I can't "Just Dance" and giggle with them and my kids. I feel like an outsider. They are doing their own thing, being twenty somethings and topping the summer off with a week in Victoria together. Some things I wouldn't do anyway because of Autism, but when it's all off the table it feels so much more poignant. I am not an envious person over other's lives. I like mine. However, this year I feel the pangs of wishing to be more. I feel like a party pooper because the small ways I could relate in before are robbed.

It's hard to understand when you don't have a mind that causes being an observer in other areas of life  on a regular basis. Having Autism causes me to be a spectator in many areas of life due to sensory overload or a different approach to life. So having the few areas I can relate to people in taken away due to other factors brings on a deep sense of failure and disappointment.  Why do I feel like a failure? Because I can't be perfect or normal. What a ridiculous standard for even the most ordinary, "normal, seemingly perfect" person! I see my contradictions but it doesn't help.

Something as simple as conversing takes up a lot of energy. I laugh less even though in my heart I feel happy. I can't express it as much because it takes that which has to go elsewhere in my body. I can't cry excessively because it would hurt my heart literally. I can't laugh hard without feeling panicky after. My friend who had a heart ablation understands this. She said she could not express any emotion pre- ablation without triggering her heart problems and it led to anxiety and depression due to suppression. That is how I feel. I have to suppress to be an acceptable version of healthy in my organs.

Muscles spasm without enough blood flow, organs work harder to function at a regular interval, and the body does what it needs to do to survive. Miraculously the body does away with what is not necessary first. Not enough blood flow? Ok, let's cut off the nails, hair and skin first so that the organs can have more oxygen. I am in awe of that. Really I am. The body is amazing! But I suppose the vain part of me resents my veins for the sacrifices I have to make in my appearances. I already feel old and act old. Do I have to look it too? I look like I just lived through some awful heartache or ravaging disease. I look like I hate life or have a bad one. I am wrinkled yet zitty, my skin is sagging from lack of muscle tone and my hair is falling out in clumps. What I look like doesn't match how I FEEL about life or my existence. Sometimes I try to fake it by applying tons of make up, wearing hair extensions, and covering up my body in flattering clothes, but that takes so much energy. I wish I could do it everyday because mentally I would feel better but I just can't. I want my outer self to reflect my inner self. I feel my inner self, while struggling and different, is beautiful. I suppose each of us feels that way regardless...

I look at my sister and cousin and I feel like an outsider this time. For the first time in life, in a rare place I felt like I belonged, I no longer do. They try to include me and it's not their fault. The only ways I can participate is watching movies with them. Understandably they don't want to spend most of the summer watching and my heart hurts each time they say no because I understand but I still want to feel like I had a summer too. I realize that it's ridiculous and immature but if I am being honest with myself the feeling is there. I am going through the stages of grief. I feel angry about it or sometimes at them for something they can't control. I feel denial. We went to the city and I tried for the same level of energy I had previous summers before and I totally crashed. It was awful. I felt the bitterness creep up when usually I do not struggle with bitterness. Life is so different for me anyway that being bitter about it all would be a huge waste of my time. However, I think I am bitter because I see how much I have and I am bitter at myself for feeling like I can't live it. I feel the sharp sting of my own lack of participation in life. Especially because I WANT to participate.

We started renos last summer in our basement and upstairs. Basically we are re doing almost our entire house. Up until December I was helping a lot. I could already feel that something wasn't right but I pushed through. When I just crave being snowed in for days and days and I picture myself snuggled in bed as a life line and comforting image, I know it's time to face what I don't want to face.  I had to stop helping. The projects I loved contributing to, imagined up and designed could not longer be mine to shape. While I am so grateful my husband has the talent and energy to finish it all up, I HATE not contributing. The times I do I will hear, "Careful honey. Should you be doing that? You are going to pay for that later and be in bed for a couple days. Hon, you might hurt yourself. Go lay down." That is probably the phrase I hear the most, "Go lay down." I love him and he is such an amazing guy. I don't resent his care of me. I resent that he is right and my body is doing it's best to heal and I am impatient with it. I resent my own lack of inner peace. While I craved these sort of statements back in December/ January and needed to live in a state of couch potato until March, three months of laying down was enough. I didn't start improving until May. A ridiculously long time to do nothing. At the beginning I wasn't even supposed to do dishes. How does one be a mother, wife and friend when for months they can't attempt simple tasks? I had to redefine what it means to be a contributing member of society. I had to believe that just BEING is contributing. I couldn't even write without feeling exhausted. It still takes it's toll.

All of this lead up to my crisis. Chronic anything can cause crisis and it was inevitable. The problem is that I am so aware of my flaws and beauty that travelling it in ignorant bliss is not an option. The upside is that awareness can cause quicker processing. I am not ready for winter because this summer was an extended winter for me. I stayed in a lot more than I wanted to. I was so sick of my computer that I would just stare out the window longing for the suppleness of youth I am supposed to be enjoying. I suppose the experience causes empathy for so many young people suffering from disease, malnutrition, poverty ect. There are many people worse off than I, at younger ages. Which is why I try not to use my social media platforms to only talk about the good times. It paints an unrealistic version of life. I also believe the reverse to be true. To only talk of that which is a struggle is also unfair. Life is both good and bad. Honouring both brings a level of authenticity.

I am redefining myself yet again. I am re defining what it means to have a good life or a well lived one. I am reading challenging books on varied topics and listening to my heart when it asks for a song, a moment in the sun, or a light walk. Yesterday, everything inside of me begged to go outside in the rain. I probably looked insane to my neighbours but I walked out in the cold pouring rain in my bare feet. I gingerly touched the plants dripping with life and squished my freezing feet deeper into the earth trying to become part of it's energy. I held out my hands to the sky and steeped myself in it's tear soaked misery. Walking back into my warm haven, I felt better. When I listen to my heart, despite how the world may interpret my actions based on their own perceptions, I am a step closer to living in the moment. Living in the moment, embracing all that is, brings deep moments of beauty and pain. That is what I have to remind myself in a crisis.

I'm not better. I just am.

I have listened to this song over and over from one of my (many) favourite romantic comedies "Fools Rush In." It warms my essence when everything else feels cold.


Wednesday, August 12, 2015

Redeeming the Struggle, the Magic of the Gut and the Daily.


For over a year we have been on a journey of healing. A path that looks more like a zig zagged web of chaos then a straight forward angle. My husband and I change our minds quite frequently. We see this flexibility as strength containing a multitude of all that IS in our existence and allowing our minds to change so that we can embrace many lessons. Our healing path mimics this awareness. We don't embrace one specific diet, one specific way of healing... but we do have specifics that work for us, for a time being, specifically.

Another twist in our journey has transpired. We have been reading the book "Gut" together by Guilia Enders . While we have focused on gut bacteria for more than a year, we are constantly finding new ways of incorporating this into our daily life. Although Gut is a word that seems to have a cultural yuck factor with it we have found a magic within. The gut now symbolizes for us the beautiful dance of life that intricately makes up our micro to our macro. Neglecting the information or our respect for our natural states ties into every facet of BEING. Psychology, philosophy, belief, orthodoxy, health...ALL of it is tied to the gut in fascinating ways. It is pure magic and once embraced, an awe inspiring education.

I have read GAPS (Gut Psychology), Weston Price, Paleo, Eating for Your Blood Type ect. and our family has applied what personally works for us and discarded what does not.. What ties all of these together, is the power of what we consume and the fact that our gut is our second brain full of bacteria that makes up us and influences our decisions.

Being kind to our body...what we do, what we eat, what we converse with...the very nature of our fabric...is what enables LIFE. There is never a linear path to healing and if there is, it should be questioned. Redemption is in the struggle BECAUSE of the learning aspect. We can redeem any struggle if we have found more of our substance.

I find my substance in the ordinary, the raw, the natural, the simple and extreme. I have learned that many misunderstand me and I have to be careful what I say to keep peace although I simply can't play that game much anymore. I don't avoid but I don't look for those connections either. I have what I have, and on most days that is enough. In the past interactions my honesty was questioned continually and my paradox self was not embraced as genuine. I am learning not to care. The days that I do, I fortify myself with loving boundary quotes (link). Boundaries not to fence me in and keep me stagnate but boundaries that enable my freedom. To remind me I am worth more and can ask to be treated as the one I am. I know who I am and what begets freedom. Gut healing is not a straight linear path. In the best of guts, a bacteria can come and wipe out everything good. Such is also the landscape of relationships, the mind and all living things. Such is what I am.

My mind marvels at the way life is all connected. Resources we have needed, either through perhaps the law of attraction, or something universal, have been infused into our life with what I call enchantment: books, podcasts, music, people, moments, events, pins ect. leading us onward in a path that is infused with the daily. Daily is a combination of ordinary which is extraordinary mixed with some magic and some hardship.

My husband and I began a journey together back at the age of seventeen for both of us. We have seen each other through post partum depression that gave us both a differing case of PTSD. We have also seen those same moments give us the most life giving gifts. We have been through tempests and storms and people who were bent on tearing us apart because we seemed different. Through sweet diagnosis to bitter diagnosis, to questionings of faith to a greater faith or a lesser faith (depending on perspective) and through it all, our gut instinct, and our literal guts themselves, found a way of triumphing. Through vulnerability, constant communication in our little family, and questioning the absorption of all things, we found each other and we found ourselves. Our twenties gave us so much and took so much but I am honoured that we travelled them as partners: together and separate. Now in our thirties, we are finding more puzzles, more answers, and even more questions and sometimes the ordinary charm from every day life binds us together in a mystical dance of symmetry, while at others we are torn into chaos churning malnourishment on some level, clawing our way back to ourselves and each other.

Reading, absorbing, BEING in our home and the outdoors, learning, listening to the wind, touching each other's sun kissed skin, toes squished in the blades of grass or hearing music from our speakers or the trees and finding our rhythm in the smells of our day or the taste of what transforms to bacteria that gives life and death... all the senses living to a beautiful extreme has caused this way of life. I see it as a gift from Autism/Empath/Sensitive one ect. Having a different gut that causes a different brain scenario. Though the gut can heal and help heal aspects of the mind, we are still who we are amongst the changes. I see sensory overload, the curse gift, that can cause so much pain but also a level of healing that most have a tough time embracing BECAUSE of the deep sensory understanding.

I am content although my blood runs thin and life is not perfect. I feel both the sultry call of the inner micro and macro world and the deprived stagnancy that can also occur simultaneously. My introverted self may not show the entire world what my beauty is, the raw warmth tingle of my daily but it shows me and those nearest.

 I saw a picture of my 18 year old self pre pregnancy and though I recognized her, I realized only part of her exists in me now. I thank her for being HER as she WAS AND AM  and bringing me here, but I am also relieved life is not so stagnant as to keep me exactly her. My body may have been more supple back then but my mind is more supple now. I have accomplished the love of a lifetime in my husband and myself actually. My three children, once past the age of five, helped me find out that I actually AM a spectacular, if not culturally different, mother. Each has taught me more and infused growth on every level than any book could.

Life occurs in the gut, death occurs in the gut, nourishment and disease occur in the gut...all affect the brain and life itself. Each of us is a magical mixture of science and what can not be explained. Each of us partial to our gut bacteria, our inner working genes, our environment, and our decisions and experiences. Though these factors influence us, we also have our part to play in the world we create by learning about what influences us and how we choose to respond. I hope that on most days, my husband and our family and I continue to respond to our daily. I hope we respond by eating food that gives us a combination of good and bad bacteria (both are needed in certain amounts.) Likewise I hope we embrace the good and the bad in life's circumstance. Most of all, I hope we respond to the sensations of being alive in the little gifts of Being. I hope I savour the way my twelve year old still tucks her hand into the crook of my arm as we walk and I feel her warmth seep into my skin. I hope I take notice of my youngest's freckles that seem to dance upon his cheeks as they fill with a smile and giggle of mischief. I hope I remember the sound of my ten year old's voice as he croons his self written lyrics in his room, thinking I can not hear him. I hope I embrace my husband, smelling of construction, salt sweat, sun, and earth as he drives up in his rumbly truck after a day of working in his trade. I hope I notice his eyes and the twinkling warm welcome he always gives no matter how his day has gone. I hope when I wake to myself, despite some bodily ills, that I notice with gratitude what DOES work in my body, what beauty DOES make up my gut and all that is me.

I hope you also find the magic in your own journey and find redemption in the struggle.

A 20 minute clip of Gut author Guilia Enders in a interview. She is smart, funny, quirky...and just generally adorable...and yes I think I can say that a woman is not only extremely intelligent but also adorable ("inspiring  great affection/ charming".) Saying she is adorable doesn't outweigh her intelligence:)



And a happy song...because when I listen to this song I feel energetic and happy. This song completely describes my husband. I am so lucky: