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.


4 comments:

S said...

Thank you for writing and sharing this post. I can feel your pain. I did not know that you were going through so much. I have often experienced a lot of pain -both physical and mental which left me confused and took away my idealism. I have often wondered about the complexities of life. I find life a lot more complex now compared to when I was a child. With advancing age comes many health related issues and also communication issues with people who are different from us. Sometimes, writing a blog post, cooking a simple meal or just going through the day seems like a huge task. Also, I have noticed that as I am aging, I do not know why but I am becoming detached lately.
These are times of transition. We have to allow our mind and body to pass through this phase. Hopefully, it will pass. Or it may stay on and we will adjust. I don't know what will happen. But I can understand. and I hope that all will be well.
AS we are aging, we are feeling and experiencing new experiences every other day. Sometimes all this can be confusing. But we are all in it together. One day we will look back and say-I have gone through this. I have survived this. or, I am still in it but somehow I am coping.
For me, it is more like looking at life like an observer...and slowly I am learning to take things as they come but I am not there yet...I mean I am still questioning, wondering and getting confused at times...sometimes there is light, sometimes darkness ( just as you have said in your post about good times vs. struggle )and I like it when there is neither...just silence and calmness ...neither anticipating, nor lamenting...but just me and my universe...which you call being in the now...but those moments are also rare.
take care,

Kmarie Audrey said...

Loved all your thoughts. Sorry you are also travelling a similar path in life and age ect...but as you said there are some good moments...yes detachment...it can be a sign of ill health and depression ( detachment) but sometimes it is also necessary...Mine is actually medical...My doc actually said my detachment this time is not from the mind but how the low ferritin is affecting my body and I dont have the reserves to care for much of anything...except for the rare time I write a blog post!:) Or decorate my house:)

Ashe Skyler said...

Would a rocking chair, swing, or some kind of seat on the porch be too much? You'd be able to sit and enjoy the fresh air often. If any of the kids are good at gardening, flower pots could be next to you and brought in during the winter to keep them alive. (I don't remember if you already have flowers, just that you have a very pretty house.)

Kmarie Audrey said...

Ashe:
You are very considerate...the rocking chair pretty much feels like the age I am currently at ( I feel 80!) ha ha..but its a great idea. do often sit on the porch on a lawn chair soaking up the rays. Sometimes on my worst days I sit there like a blob for hours just soaking up enough sun to feel like I am alive. Great idea to put a rocker! Too bad I gave mine away!:) The kids have been doing some gardening so that is a good idea too! Thanks for the compliment- our house is full of plants but I actually don't have many real flowering plants...maybe I will get some soon!
Thank you for such thoughtful suggestions:)
I keep telling myself this too shall pass....and in a way I don't want it to because then life will be that much shorter....and this isn't so bad. I can't keep wishing it away...because it is SO good otherwise. I just wish I had the capacity to show how much I actually love my existence. It could be worse. I just feel often that an IV is hooked up backwards sucking out my life. Its a kind of tiredness that can not be explained any other way. The doc says its the low ferritin combined with really tiny blood cell sizes...guess mine are crazily tiny...who knew blood platelets would change up quality of life so much! :)

I am getting good at taking pictures that LOOK like I have lots of energy or LOOK like how I feel about life ( wonderful) but may not portray regularly...so that when I look back- it wont reflect exhaustion as much and showcase a lot of the very good times....:)