Saturday, March 2, 2019

To Slow Growth, Music, Kacey Musgraves, 'Golden Hours', Healing Marriage, and Love in All it's Forms.


My wings of freedom are often tied. I can sometimes be found painstakingly untangling them but sometimes my husband easily reaches around and reminds me to fly. Kacey Musgraves recently won a deserved Grammy for her album "Golden Hour" which has been playing in our home since the day of it's release. The album is my go to for healing and inspiration and invocations of Hestia. Hearth, home and self Soul care. In it, she sums up the feelings of my relationship with my guy nicely: "Now you're lifting me up, instead of holding me down. Stealing my heart, instead of stealing my crown. Untangled all the strings, round my wings, that were tied. I didn't know him and I didn't know me. Cloud nine, was always out of reach. Now I remember what it feels like to fly. You give me butterflies, hmm. You give me butterflies. Kisses full of colour, makes me wonder where you've always been. I was hiding in doubt, till you brought me out of my Chrysalis."( - Kacey Musgraves, Butterflies)
                                                

Within our Merry go Round of love, year after year, there are fluctuations, invitations into new experiences, comfort in old routines and supports through the Circus Trap of chronic Illness and differences. He brings comfort into places where I feel only distress. If my coat is too heavy but I am cold without it, in a day away from home, and I am under prepared (a situation I don't find myself in often but it happens) he will disappear into Winners or Plato's Closet and come out with a soft, trendy (usually men's option) that works beautifully on me. It's always something I would not pick out myself but suits me entirely. I think that says something about our partnership. Love can actually be found on a shelf in a store or a men's rack of Sweaters. (Recent Hoodie pictured below...) Love is a wild thing in concept but can found anywhere...

"Even if you lose me I will find you. There's no way to stop it so don't try to. Running like a river, trying to find the ocean, flowers in the concrete. climbing over fences, blooming in the shadows, places that you can't see. Coming through the melody when the night bird sings. Love is a wild thing... Oh, I used to be scared of the wilderness of the dark, but not anymore..."(-Kacey Musgraves, Love is Wild Thing)

My husband steam rolled into my life at the age of 17 with kisses full of colour. I had been obsessed with Elvis for most of my childhood, and my guy became so envious of that, he wanted me to take down the posters in my room, which made me laugh (I kept them up until we were married.) But little did he know, that he was my new version of Elvis. My classic love song that would belong to me until the end of time. "All I ever wanted was something classic. The kind of love song that goes on till the end of time. All I ever wanted was a little magic. With a good laugh, jet black sparkle in his eye. You're my velvet Elvis. I ain't never gonna take you down. Makin' every body jealous, when they step into my house. Soft to the touch, feels like love, knew it as soon as I felt it. You're my velvet Elvis baby.  I don't really care about the Mona Lisa. I need a Graceland kind of man, whose always on my mind. I wanna show you off every evening. Go out with you in powder blue and tease my hair up high. You're my Velvet Elvis."(- Kacey Musgraves, Velvet Elvis)



He walked in with magic. I could not get over the fact that movies about love seemed suddenly sub par in comparison to our love. The new butterflies brought wonder and excitement. And now, 17 years later into our marriage I ask him suddenly, "How long have we been married?" and without missing a beat he charmingly says, "Not long enough." I go back to writing a blog post he doesn't realize he is the center of, and he keeps reading his book, looking like a combination of Aquaman and Starlord and I am smittin' still. He's my comfort and joy and the first person I think upon whenever I hear a new song. "It's the song that they're playing, the words that you are saying. It never felt so right. And I'm the kind of person who starts getting kind of nervous, when I'm having the time of my life. Is there a way for the way that I'm feeling tonight? Happy and sad at the same time. You got me smiling with tears in my eyes. I never felt so high. No I never have been this far off of the ground. They say everything that goes up, must come down, but I don't want to come down... I don't mind it all, I'm used to falling. I'm comfortable when the sky is gray, but when everything is perfect, I start hiding cuz I know that rain is coming my way. Cuz I'm happy and sad at the same time...."(- Kacey Musgraves, Happy and Sad)

I am often my feelings and am often more comfortable with the darker emotions like sadness, anger, depression and anxiety...I read that type 4 with 5 Wings are the only personality type that have to learn how to embrace joy, laughter and happiness and it's their flip "darker emotions." That's probably why I am drawn to bubbly musicals because they provide relief to my mind. He knows how to calm my fears of happiness and he teaches me to just enjoy the ride. 
"All that I know, that you caught me at the right time. Keep me in your glow, cuz I'm having such a good time, with you. Baby, don't you know, that you're my Golden hour? The colour of my sky. You set my world on fire. And I know, I know, everything's gonna be alright. I used to get sad, and lonely when the sun went down. But it's different now, cuz I love the light that I found in you. Baby don't you know that you're my Golden Hour, the colour of my sky, you set my world on fire.... You make the world look beautiful...I thought I'd seen it all before. But looking through your eyes, it looks like paradise..." ( Kacey Musgraves, Golden Hour.)


He is my Golden Hour. Laying on the couch in our living room I can hear his laughter over my music from the Library and my heart lifts. The smile is upon my face before I realize I am even happy...He has that affect on me.
Yet, we have had our hits and misses. Recently we came out of a two year struggle after his mom passed. Our marriage took the hits willingly and we came out stronger, but for awhile there I often wondered about divorce. Yet, I knew starting something with someone else would bring the same problems so why not weather it with our history backing us up? (I do think divorce is a good option in many cases but it was not for ours.) "You look out the window while I look at you. Saying I don't know, would be like saying that the sky ain't blue...you can have your space cowboy, I ain't gonna fence you in. Go on ride away, in your Silverado....We had our day in the sun, when the horse wants to run, there is no sense in closing the gate...Should have learned from the movies that the good guys don't run away..." (- Kacey Musgraves, Space Cowboy.)
Luckily, my cowboy didn't ride away. He wanted to sometimes, but he was one of the good guys who worked hard to stay (I realize some good guys also need to walk away.) And looking back I am so relieved we weathered that storm. He may not be Blaine Anderson, but he is better and I often think my obsession with that character is more about energy and myself combined with the feeling aspect because Blaine (Darren Criss) does a beautiful job at wearing the full scope of human feeling masterfully. I digress. I'd still choose my husband over my fictional dream character.

"Oh what a world, and then there is you. Did I know you once in another life? Are we here just once or a billion times? Oh I wish I knew, but it doesn't matter, cuz you're here right now and I know what I feel. These are real things. These are real things. Oh what a world, don't want to leave. All kinds of magic all around is it's too hard to believe. Thank god it's not to good to be true, Oh what a world, and then there is you." (-Kacey Musgraves, Oh, What A World)

Because Oh! What a world it is with him in it. He makes me feel every single drop of rain. The subtle touch of his gentle kisses on my skin warm me up to the nearness of joy. He reminds of the realness of life when I am caught up in my mind. I'm the type of gal who always wanted a partner. It just was what I desired more than anything else in the world. I wanted a love song to be the prelude to an epic movie that lasted several sequels long. Often my five year old self would cry into her pillow bemoaning the fact the Gilbert Blythe was fictional and Elvis and Gene Kelly were  already dead.
"Bursting with empathy, I'm feeling everything, the weight of the world on my shoulders, hope my tears don't freak you out, they're just kind of coming out. It's the music in me and all of the colours..." (- Kacey Musgraves, Mother.) 

I am a feeler. An INFJ, Type 4 with 5 wing, who is an empathic, strongly emotionally coloured person. This is balanced by the logical aspect of Autism, but the odds of being calmly stable are not in my favour. Ironically, however,  I often come across this way. Every day I struggle against my range of feelings. I AM my feelings in most cases. It IS the music in me and all of those colours. Kacey's song and I have that in common. That is how a 4 type, INFJ will be. I also need ample alone time, even in a marriage and my guy respects this. "Even if you've got somebody on your mind, it's alright to be alone sometimes. It's the lone, it's the lone, it's the lonely weekend. It's a low, it's a low, it's a lonely feeling without you. I guess everyone else is out tonight. Guess I'm hanging by myself, but that's alright. It's the lonely weekend."(- Kacey Musgraves, Lonely Weekend.) I love that on weekends we can be in the same house but doing our own thing for hours. Yet, we are still sharing meals and a quick kiss passing in the hallway. Sometimes we dance in the middle of a conversation or suddenly start laughing at one of the children's antics together. It's good to finally laugh with each other again more naturally after the tougher years we just walked out of.

 "When it rains it pours but you didn't even notice. It ain't raining anymore. It's hard to breathe when all you know is, the struggle of being above, the rising water line. Well, the sky is finally open, the rain and wind stopped blowing, but you're stuck out in the same old boat again. You hold tight to your umbrella, but darlin' I'm just trying to tell ya, that there's always been a rainbow hanging over your head. If you could see what I see, you'd be blinded by the colours. Yellow, red, orange, green and a least a million others. Tie up your boat, take off your coat, and take a look around. Cuz the sky is finally open... it will all be alright..." ( -Kacey Musgraves, Rainbow.) 

After the latest Bipolar phase of our marriage, in the last six months, I have had to choose to see the rainbows. It was easier in some ways to hold on to the raining pain. During the tougher time, for more than 18 months I was living with my guy but being a single parent and struggling to keep it all together. Then, when he finally became well enough to become his full, realized self again, I fell apart because I was running on fumes...fast forward to now, and each day I have to actively remember how far we have come. When he is angry, I have to remind myself he is not Jekyll and Hyde anymore and that he will calm down quicker. Instead of reacting in PTSD, I have had to consciously choose to see that I am not in that boat anymore. That is tougher than I thought it would be at times. Yet, here we are and there are rainbows of colour in this new reality swirling around us. Maybe the melancholy blue is deeper and more pronounced than it was before but the warm burnt orange, mellow yellows, and calm greens, along with a myriad of other colours dancing around us, are showing up once again. 



"I like where this is going, you like it too. We rarely never ever ever don't see eye to eye, but we're  going to. I can show you strong, I can fight for you, I can try to move mountains if you want me to. But baby I ain't Wonder Woman. I don't know how to lasso the love out of you. Don't you know I'm only human? And if I let you down, I don't mean to. All I need's a place to land, I don't need a Superman, to win my lovin', cuz Baby, I ain't Wonder Woman. Bet all that gold gets heavy. Weighing on her. I wonder if it's scary, always trying not to get hurt? I know how it feels, it ain't easy, there's a reason you only see it in the movies. Cuz baby I ain't wonder woman. I don't know how to lasso the truth out of you, Don't you know I'm only human. All I need's a place to land, I don't need a superman to win my lovin'...you don't know how to fly but that's ok, neither do I."- ( Kacey Musgraves Wonder Woman.)

I love that he does not expect me to be Wonder Woman. And even though he can come close to a super hero to me at times, he is no Superman. A fact in which I am heavily relieved because living with perfection would be misery. Neither of us have to fly, and that fact keeps us grounded. Although we enjoy the magic of Being on a fairly regular basis. We are learning to have fun with each other again. It used to be so easy. Our relationship started out with laughter and balancing each other out...and today we still have those strengths...but the heavy weight of death and personality disorder due to grief fallout and differing roles stifled some of our natural hilarity. Learning to laugh again can be tough, soul work. But slowly, surely, our love is re blooming and the Phoenix has to burn before it arises. And I am in love with a slow burn of beauty, growth and becoming.



"... Good in a glass, good on green, good when your putting your hands all over me. I'm in love with a slow burn. Taking my time, let the world turn. I'm gonna do it my way, it will be alright, if we burn it down and it takes all night, it's a slow burn. Yea..."(- Kacey Musgraves, Slow Burn.)

To 'slow burns' of growth, music, Kacey Musgraves, 'Golden Hours', Healing Marriage, and love in all it's forms.



*All songs from Golden Hour by Kacey Musgraves. The soundtrack of our year. The only Song I did not include from the Golden Hour album was "High Horse" even though I love it too but it didn't fit the post. I highly recommend purchasing the album on record but it can also be found on Spotify or Itunes. Youtube links for each song can be found in the post above.

I found this version of "Here you Come Again" by Kacey Musgraves and Katy Perry in 2014 and it made me so happy. I didn't picture the two of them together but it made me like Katy more and her sassy little style ( her documentary a few years back had me crying lol....see, feelings.... LOADS of feelings...) Anyway, Dolly Parton is another one of the many women I adore and admire and someone I wish could bottle even half of her cheeriness and this song is one of my fav's from her. I am so glad she was recently recognized as performer of the year... Enjoy this fun cover!; 

Tuesday, February 26, 2019

Women's Equalization? Are we the Same or is it Better to be "Different but NOT Less?" Women's Health "Equalization"/ Autonomy and Respect.


"Oh you are a Feminist." I have heard that statement more times than I can count, and it is often accompanied by a tone of derision, from mostly men, yet on the flip side of the coin from strong, fellow women I have heard condescendingly, "You are obviously not enough of a Feminist." Which one am I?

I am what I am, a product of my body, hormones, genetic make up, choices, environment and so much more...

Recently, we had a study in our home and the topic of Women's Rights came up. There was back and forth between the males of the group and the two only females of the group which included myself. I find I am often the female minority in Philosophy groups- a point I am still curious of. Is it religious demographic or is it a larger question of female and male? I don't know. Anyway, at one point in the conversation I became fed up and interrupted with, "It's like what we advocate for in Autistic communities....Autism is DIFFERENT but NOT Less. As Autistics we do NOT want the same opportunities as "normal" people. If you put us in an extreme sensory situation we will not measure up. If we are required to give the proper eye contact and the same socially acceptable behaviour as our peers, we will probably not be given the job. What we need instead is greater understanding that although we may have differences and weaknesses in some areas, we will have strengths equal to or surpassing in others. The same should be said for women in general. While it is true that some women can be stronger than men, in general this is not usually the case. But just because we are not physically stronger, does not meant that we should not have the same freedom to try certain jobs ect.

"Different and not less" is about respect for the individual. It's about autonomy and the ability to choose the life that works for us. It is about the ability to bring our certain skill sets and be acknowledged for them or given the time and patience for us to prove our potential in outside the box ways. It's about defying societal expectations instead of conforming to them, but it's also about trying, in our own way to achieve societal contributions and acceptance. It's that fine line between the Yin and the Yang. And it's more work than just general social acceptance and pushing everyone to achieve the same goals.

In Women's Issues, I am getting frustrated because even though we have made substantial steps toward autonomy, the suppression of our clear differences is being affected during these marches to freedom. While there are exceptions to all things and ways of Being, in general, there ARE biological, physical, chemical, psychological, and physiological, differences between the male and female body. These should be celebrated instead of ignored. Also, they are an important part of health and functioning.

In our day and age we still do not talk about the complications of prolonged menstruation and women's health. Women are starting periods as early as 8 years of age and sometimes bleeding into their fifties. This time of menstruating is longer than anytime in history- especially without the multiple breaks of pregnancy that were part of life before this century (which obviously came with other serious health issues.) While the pill has been toted as the "miracle pill", many women are finding after years of being on BC their health problems come back worse and complications arise from long term use, even if they didn't get the horrid side effects that can accompany birth control. Long term effects like increased blood clots, cancer, early death, infertility, hormone imbalanced conditions, and autoimmune diseases ect. Women's health is under researched and not discussed often enough. Even saying the word "period" is often met uncomfortably from both men and women! Yet, the jokes of male anatomy are often met with snickers from all sides at the very least. Birth and menstruation are essential to human life, both male and female and should be an accepted part of conversation in all circles. Until we get to a point where the women's body is treated as more complex in medical situations and with the respect we deserve, women have a long way to go in "equality." Equality does not mean that our bodies should be given the same amount of time as a male patient's doctors appointment, it means we should be given a longer slot of time to be equal in treatment. Fair is not fair. Equality should mean that menstruation and it's potential health effects should be as researched as male pattern baldness even though the money is not in it.

An example of un-equal treatment would be how women are treated when they have heavy bleeding but refuse Hysterectomy, Ablations or the Pill. See THIS ARTICLE. Our system is Male centric. The female doctors that have dealt with my issues often do not have the same issues I do...I honestly believe most female doctors are in the percentage of women who have experienced light, normal bleeding because they probably wouldn't have had the time or energy to get to that position if they had heavy, iron depleted, menstruation month after month. It IS limiting. One in 5 women experience heavy bleeding or complications from their cycles. It is a pretty hopeless situation for those who do not wish to compromise their body with the effects from birth control or have an Ablation and Hysterectomy.

Personally, I know this to be true because I have also been treated with derision, condemnation and rudeness in multiple medical situations because I refused to go on birth control or to have an ablation. I have been heavily anemic for most of my life and have spent the last decade with a Ferritin ranging from 2-9 ( and never higher than 9.) I have been on birth control once and it made my issues worse and my bleeding lasted for months. After extensive reading, many anecdotal stories and the limited research on the long term effects on Women's health, I will never go back on it. That said, I do believe it has a place in society and that for a select few it is the best choice. The doctors are not kind when they realize you will not easily be fixed. It is rare to find a Doctor who advocates for root cause or takes the long term, long hours of digging and care to diagnose the complexity of women's health issues. I have also found women doctors to be especially unkind about this because if the pill worked for them, why wouldn't it work for me? Some of these same women march in Women's Rights rallies which I find slightly ironic. I guess I find acting upon beliefs in the day to day more substantial, although there is a place for marches too, but if we are going to march, we should know the full scope of women's experiences and engage in understanding.

THIS ARTICLE sites, "Recently, Hormones Matter has begun to explore the legalities of the medical informed consent, here and here. With all the adverse effects associated with endometrial ablation, especially the need for hysterectomy later, one must question whether women are informed about those risks. As I have found when investigating this topic, there are few long term studies on endometrial ablation. Many of the articles cited for this post come from paywalled journals that are not readily available to either the patients or the physicians – the costs are prohibitive for both. So it is not clear whether the physicians performing these procedures are aware of the long-term risks associated with ablation. And as one physician suggests, neither the pathologists nor radiologists responsible for diagnosing post ablation pathology are trained to recognize these complications. Without data or access to data and without training, one wonders whether it is even possible to have informed consent for a procedure like ablation." 

Why is it, that in 2019, we still do not have involved informed consent on Women's health procedures? Why is this so under researched? Why are Doctors so prone to slap a "hypochondriac" label or "Anxiety" label on women who are suffering with hormonal issues or bleeding issues that are legitimate and need new cures? Thus far, there are no long term cures for Endometriosis nor for PCOS or Hypothyroidism or many issues that mostly belong to women. We are in an age of scientific discovery and so called "rights" yet we have not even made huge strides in these areas. Or what about the scarily high rates of death and longe term affects in maternal health care? Yes, we have made large strides, and yet most causes of mortality or morbidity are from Doctors mistakes in the Health care system. See THIS, THIS, THIS, THIS and THIS article.

I hear men talk about abortion and the injustice of it and yet I do not hear them talk about the injustice of the rising mortality rate in pregnant women or infant death. Why is that? Every day approximately 830 women die of PREVENTABLE causes of death in childbirth. Until you can talk to me about that issue, I will not listen to arguments of equalization between males and females. Until you can discuss the 4.8 million (as of 2016) females and children being sold into the sex trades and the whopping 85% of women in domestic abuse situations as opposed (to the also sad statistic) of 15% men, you can not talk to me about abortions. 

In my personal birth experiences I had a doula twice to advocate for my rights, and in these situations my rights were still ignored in some regards. My body wasn't treated as my own in my first birth and I suffered severe post partum depression for years after, along with heavy bleeding for 12 weeks and health issues. Nurses were often worse then the doctors. It is a travesty that women are cold to other women and treat these tender issues between life and death as trivial. While birth is an everyday part of life, it is in no way trivial.

Having female genitalia and hormones IS different from having male genitalia and hormones. Equalization would not be fair. We NEED to be treated differently. But that does not mean that we should not have the same amount of opportunities that men have enjoyed in the past. We should have access to our own decisions, and the ability to make a good life, whatever that entails, with personal power.

With my anemia and blood loss every month, I could never hold down a regular job. Other women in my experiences have either understood that because they have been there too, or are generally pretty harsh about it. Are we not all on the same side? Should we not be fighting FOR each other instead of WITH each other? If I choose to stay home and have my husband work, and he is happy to do so, should that not be acceptable? (*If my daughter wants to work and is capable of doing so and her partner wishes to stay home, that should also be a right celebrated.) Am I not still working and still legitimate in the social order of things? If my husband protects me when I am vulnerable and bleeding and can barely get out of bed does that make me weaker or incapable of making my own decisions? Does it mean that he "rules" over me? I am proud that my guy feels compelled to protect me when I am physically vulnerable. FYI that physicality does not mean I am weaker, on the contrary I'd argue it makes me stronger in some aspects to deal with what I do and still BE, but it does mean he has different strengths I rely on during different parts of the month. And I have strengths and protect him in other ways. I want him to open the doors for me. I want to lean on him when I can barely make it to the next room because I am so depleted of oxygen and iron. I want him to advocate for me and stick up for me when the male or female doctors are not listening to me but they will listen to him. It doesn't make up for the injustice of the situation but I'm grateful he is around. And what of the women who do not have a stronger partner or advocate for them (be it male or female?)

When I am pregnant and I choose not to go to war, am I less than a man? If a woman wants to go to war for her country she should. But she is generally in the minority and I think that is ok. If we actually look at the health stats of women in general, we see why that is. Millions of women suffer from minor to major hormone and cyclical or pregnancy/birth related life complications. We ARE at a disadvantage this way. But we also BIRTH life and create in ways that men can't. Men are not less because they do not do this, and we are not less because we can.

Because my health issues are more complex in this female body I am housed in, am I less legitimate? If I am suffering and find myself at the mercy of the medical system to try to find the root cause is it just female hysteria? History says we have made progress, and certainly there have been baby steps, but personal experience along with a majority of anecdotal evidence, has proven we have a long way to go.

I do not want to be equal to a man in body. That's not how I was made. I know a few women who could possibly be equal in the hormonal concoction or perhaps in strength they surpass many men, but in general it is the exception and not the rule, so why are we advocating for this? It will do us a huge disservice. Many middle aged women are stuck between wishing to come off strong to maintain their jobs but also dealing with the hormonal affects of cycles and aging. Before this time men have been the majority in the work place and women have proudly and rightfully found their places, but now we have to ask ourselves, how do we make work places and society more women centric too? Not just females fitting into the male prototype of being able to be constant, instead of a woman who is cyclical and should be proud of her ties to the moon, nature and nurturing? Yes some women are not and that is okay too but for the majority who are - where is our cyclical society? Where are the peer reviewed studies on our long term health affects and hormones? Where are the damaging statistics on many of the archaic procedures and medicines still harming us? Where are the work schedules that allow for our cyclical flexibility?

Anytime this conversation comes up, a man usually brings up the subject of the "de- masculinity" of boys in our culture. While I do believe there are some concerns with the pendulum swinging too far the other way, due to our recent patriarchal past and rightful reactions to this, I still feel the same rule applies to men. I want my boys to be different not less. They can have whatever expression of their lives that they chose. And I wish for them to respect the women in their lives and be aware of cycles, changes and differing health concerns. I also want the women in their lives to respect their different struggles, strengths, health and weaknesses. I am not a man and can not speak for one. However I have and CAN advocate for my husband and boys in many situations. That is what I wish for them to also do for me. We are all human and in that we are equal. Yet, we all have our differences and in this time in history, it is important that we do not ignore these facts, while making crucial steps onward into growth and hopeful change.


Song Choice: Wonder Woman- Kacey Musgraves....I chose this out of a myriad of songs because of this lyric "Don't you know I'm only human? And if I let you down I don't mean to. All I need is a place to land, I don't need a super man to win my lovin' cuz baby I ain't wonder woman." And yes, that is it. WE are the human scope of brilliant diversity...yet we also have distinct challenges in our genetic make up that need to be acknowledged in places of health and the work place. It's complex, it's tricky and it involves the rights of many, but with a case by case approach and societal expressions of different NOT less, it CAN be accomplished. We all can rise to complex life challenges and come out celebrated. ( On a side note Congrats to Kacey for winning the Grammy's Album of the year as it is probably the record I have listened to over and over the most since I bought it the day it came out...YAY!)




Post Edit: I AM grateful for the tests, procedures and birth control we DO have, however in this time of history I think it is reasonable to push for advancements. The realm of Women's Speciality health is still fairly new and we have further to go. Birth Control pills gave us freedom and many countries could still benefit from remedying the lack, however, the side effects and the long term effects need to be more researched and I am SURE there are better alternatives yet to come! For those of us who do not have those options due to family history of blood clots or excessive bleeding or whatever, there should already be ongoing progress into alternatives (Depro Provera alone needs an entire post on it's own about it's dangers and research ect....) Another entire post could be on the comfortability and support during scary tests for women. We could also do better in this department even if it means a few more health care dollars thrown into cheery paint, waiting room art and kinder technicians...I digress because I could go on and on....:) 

Tuesday, January 29, 2019

Where the Lost Things Go: On Lyrics, Memory, Longings and Post Partum Depression Long Term Effects


My words have flown to the place where lost things go. I used to know what I know, and now, I know I am missing pieces of what I had, that are lost in time and memory. They are there... yet not quite.

Over the Christmas Season we went with family to the film 'Mary Poppins Returns.' My feelings for the film were mostly neutral and I don't feel like writing a review, however, the song, "The Place where the Lost Things Go" caused tears to well and spill over onto my cheeks. I was hit with the precise words for expressions I didn't realize needed to be let out. Because the lyrics can be both metaphorical and literal...especially to a person who struggles on (what feels like) borderline dementia and chunks of memory taken due to PPD and other life circumstances. I don't even have memories to hold on to in many circumstances. It's odd and I feel for patients who are slowly losing their memories. I can relate to aspects of the film "50 first Dates" and often have to remind myself of whom I am and who is valid in my life and who I know on a daily basis... I feel I can express myself with help from the lyrics to 'Where the Lost Things Go' by Scott Whitman interspersed with my thoughts outside of the quotations.

"Do you ever lie awake at night?
Just between the dark and the morning light?
Searching for the things you used to know
Looking for the place where the lost things go?"

I often lie in bed, in the 'Greatest Showman' style, with a 'million dreams keeping me awake.' Many of the times it can be pleasant but interspersed and delving into depths there are troubling themes, and a sense of searching. I try to recover the things I've lost. At different stages of life the theme varies. After a death of a loved one it is often about tangible memories or pieces of them that I can honour by holding on. At other times I am searching for myself. Looking for the girl who has had stages of immense contentment, despite the trials of life, or the girl who found herself within losing herself. Sometimes it is about grief for an old phase before moving on to a natural and exciting new aspect of life. And still at others it is about recovery. Because it is much harder to recover from traumas that bring back no memories. Blank pieces of history can sometimes feel like a blanket that is rifled with unexplainable holes in the fabric. I search for the places where these lost things go.

"Do you ever dream or reminisce?
Wondering where to find what you truly miss?
Maybe all those things that you love so
Are waiting in the place where the lost things go?"
My daughter at 3 months old.

This year has been beautiful yet an overarching crisis of midlife or baby fever has encompassed it for me. I see my children growing, shooting past stages and at times I feel frantic to slow it down because I now LOVE being a mother, teaching and having my children constantly in my home every day, witnessing their beauty, helping them become themselves and attuning myself to their needs, while also being independent of self and allowing them to do the same. It is a beautiful community in our home and I see it ending all too soon. Sometimes I feel I have lived decades within one. That I have lived the lives of three in one and what else is there? This year we have gone to do our Vasectomy Reversal 3 times and then I decided against it. I don't want an empty nest at 43. Luckily friends have assured us that it will be longer and with special needs there will be an aspect that is forever, even if a different kind of independence surfaces. But it's more than that. It is a heart wrenching grief I never thought I would feel. Because I truthfully struggled with motherhood the first few years and never dreamed of being a mom. The sensory overload was enough to make we want to throw up constantly the first few years, even if I loved my children. But with each age and stage I loved it even more. My sister reminded me that I said every stage was my favourite except infancy. Unfortunately, I missed a lot of what I loved, because I was suffering the real detachment that can happen with PPD.

I truly missed many of the younger years. Years and ages I actually loved but I wasn't fully in, because my brain was almost a foreign entity. I will often refer to those years in third person because that girl does not feel familiar at all. I don't really know her. She felt taken over in many ways. I read this (CLICK) article recently about a mom who had PPD with her second baby. What she expressed hit me in the heart because, I had not told anyone this, but it was my exact thoughts upon seeing my 18 month old girl when I had my second son, "The little girl who walked through the door, nervously holding her father's hand; who scrambled up on to the hospital bed and threw herself on top of me in a wholehearted embrace, was not the child I'd said goodbye to two days before. A bizarre metamorphosis had occurred. She looked huge, suddenly. No longer a little girl at all. Compared to the baby's delicate limbs, her toddler hands and feet seemed enormous. Compared to his newborn fragility, her chunky vitality seemed almost menacing. In the space of just 48 hours my eye had become, shockingly, unaccustomed to her." Oh there is a hidden memory dredged up where the lost things go. Sometimes it is harder to actually find. Maybe it is better to, at times, be lost.

A few weeks after my son when I was still fighting a large uterus infection.

Reading the rest of the article I started panicking. Deep, quick breathes and I understood the term "gut wrenched" because that was what I was experiencing. I was gut wrenched because I realized that it was fully my experience. I gave my daughter half of her anxiety (she was born colicky and anxious anyway but I contributed) and I carried the same shame this mother carried. It triggered a memory of my daughter sucking her soother by my door and saying, "Mamma you are my best friend- am I yours?" Her vocabulary was strong and by two she was expressing empathy and deep thoughts. And I recall my heart crumbling at the realization that I was failing. I was failing to show connection. 
My son and his daddy back in the hospital with jaundice.

"My aunt, in whom I eventually did confide, offered wise counsel: "These things happen. You can't protect your children from life. Give it time. Love will return." And eventually it did. Not simply with time, but with hard work and conscious effort. "( Found HERE) That was my story too. It was conscious effort and now my daughter is one of my best friends. I recall using her nickname as the password on my phone messages instead of my son's out of a sense of duty to remember her. It was a constant reminder to be present to her. Now, we are the Gilmore Girls in many ways. 

"When Jessie was about seven, we went on holiday with another family. Their daughter was the same age as our son, the same age Jessie had been when he was born. Watching our friend's three-year-old daughter, I suddenly realized that I had no memories of Jessie at this age. Where her third year should have been there was a 12-month blank. It really was as if I had lost my mind, or part of it, during that time. As if I'd been suffering from some kind of emotional amnesia; a temporary blindness of the heart." Recently I asked Jessie about this time in her life and it seems that something similar was true for her: "When people asked me what I remembered about having a little brother, I used to say that my mum had been very ill and had been in hospital for two years. I think it was actually only two weeks, but that was how I remembered it: you not being there for a very long time."  She doesn't have any conscious memories of that time, but she wonders if it explains certain things, "Like how I used to hate it whenever you went out. It made me feel really panicky." ( https://www.theguardian.com/lifeandstyle/2009/jul/04/motherhood-second-child-family
I have almost zero memories from my twenties. None actually, unless suddenly triggered by photo, someone else or a video or if I wrote them down in blog posts (which luckily I did heavily back then.) All I have on recall are large chunks of blank spaces. I can remember my teen hood vividly, I can recall my third child's birth and then my memories come back in bits and pieces after that. My daughter had such bad separation anxiety, I used to call my dad to drop her off at Kindergarten because every single day she would cry or scream and hold on to my legs...and it was May and I was tired. Everyone told me it would quit by Christmas. My dad remembers being accosted by her and he would wait till she looked away for one moment and would quickly slip out because otherwise she wouldn't break eye contact as her little lip would be quivering and her sad eyes would be begging, "Stay." And I was part of the monster who created such a mess. And yet, I also cannot hold myself completely responsible either.
My daughter and I with first day snuggles. I was so cold and shivering all the time with high blood pressure but these moments still mattered.

There were so many factors. I look back now and realize my birth with my second son was natural but traumatic to me. He had to have the vacuum because the cord was around his neck and in the hurry the nurses dropped the vacuum (and later my afterbirth which then looked like a bloody war zone) and it was shoved into me without being disinfected. I suffered nine weeks of clots the sizes of oranges, high blood pressure, heavy bleeding and high fevers and anxiety until finally I had a D &C to clean me out. Luckily, at that time I did not have access to Internet to research or find out that I was actually close to serious death a couple times. Antibiotics and the D&C saved me. The vacuum saved my son. He also was re admitted for severe jaundice and had to be put in the incubator his first week of life. I was already depressed from my first birth (and didn't know it) because it was 36 hours of hard labour, culminating in a moving epidural, the drip, and hours of pushing that resulted in feeling nothing more than the initial joy when I finally held her but attachment took longer. I was kept in the hospital for 5 days with high blood pressure probably from gestational diabetes ( that did not happen with my other two.) No one explained what was happening or that it was serious. I had no idea until recently reading all of these articles.
The first time I saw her face.

I thought she was beautiful and I recall being struck by her eyes but then I wanted my husband to hold her after a time spent gazing. I felt a deep love for her but I also felt a bit of disconnect as well. More of a concern for myself. Which was vastly different from my need to hold both my sons without any drugs involved. There are so many issues for women and childbirth that are complex and need to be addressed. (Read the article for more on that found HERE.)
I suppose some of the lost memories are a blessing because when I suddenly recover some of them, I can be immobilized by a sense of lost opportunities, grief at what could have been and horror at the close calls that were not fully dealt with. But on the flip side there are also beautiful choices, moments of sweet innocence and witnessing of wonderful firsts that I miss too by the lost things. 
"Memories you've shared, gone for good, you feared
They're all around you still, though they've disappeared.
Nothing's really left or lost without a trace
Nothing's gone forever, only out of place."
7 months pregnant comforting her.

Only out of place...I was out of place. In the theatre I looked over at my daughter while this song was playing and her face was crumbled in a sob. We took each other's hands and held on tight. I think we both knew what has been lost and what has been found.

I also read her the above article in between quiet tears as she gently cried. We talked about what we could remember and the effects we have, the responsibility each of us bears today, and the weight it will carry into the future.

"So maybe now the dish and my best spoon
Are playing hide and seek just behind the moon?
Waiting there until it's time to show.
Spring is like that now, far beneath the snow
Hiding in the place where the lost things go"
Last summer with my daughter


I love the lyrics above. They are hopeful. Currently our frozen ground is harbouring Spring, and metaphorically this is also true. Sometimes, memories hide until we are strong enough to face them. I have been researching babies, stages, breastfeeding, birthing, post partum, miracle vasectomy stories, and reversals constantly. I have been obsessed since last Spring. I cry with each cycle. I beg to undue what was done. My husband agrees and then I question myself. Am I just wanting what was lost? Am I looking for a re do? I know it is more than that. I have a huge list of motivations- some are good and some are less noble. I have a LONG pros and cons list. It is deeply personal. 
I was 9 months pregnant here and exhausted but felt so guilty about my daughter I recall forcing myself to bake with her and it took all the energy within me. I was also anemic.

But one aspect stops me each time from going through with a plan to naturally birth more, even though my biological window is closing and I love motherhood and have wanted a bigger family since my third was born. My doctor can recall me looking at my husband right after and smilingly saying, "If it is like this, I would like more." But my husband wanted to end on a good note. And part of me, faced with some failures of the past and scared of history repeating itself, allowed the decision. It was mutual. And I can't fully regret it because I was a baby making machine and I know I would have many by now...which isn't bad, but I did need a large break to find autism/Aspergers, to find my children and know them in a way that I could handle, and to catch up on sleep and find patterns that worked for us. But each time I start to wrap my mind around pregnancy and infancy (both of which were not my favourite times) and justify them as an ends to a means ( beautiful children and more of what we have) I stop at the post partum period. Because maternal death is still alarmingly high for the times we have. READ HERE. Because you can still die from post partum pre eclampsia up to 12 weeks later and I would be paranoid that entire time. I didn't realize I had minor forms of deadly experiences. But mostly because I can't put my daughter (or sons) through any sort of detachment again. Even if she is older. Even if she says she will understand and can handle it. It stops me with panic every time. I am older, wiser, and set up for a better go...but what if it is traumatic again? What if I am triggered into that state of being? And with this realization, I end up sobbing because I can not bring into fruition what I wish to... because of who I am. Which is hard to face. To see your disabilities and limitations and realize that they hold you back from some great life choices. 

"Time to close your eyes, so sleep can come around
For when you dream you'll find all that's lost is found.
Maybe on the moon, or maybe somewhere new
Maybe all you're missing lives inside of you."

My dreams have been fraught with babies, birthing, pregnancy, nightmares, threats and disconnect...and I am hoping that soon they will slowly fill with the good again. I didn't realize post partum depression still affected me today. It was off my radar for years. I had no desire to delve back into talking about it nor did I wish to think too much upon it's longer lasting effects. Maybe my daughter and I have such a good relationship because of our rocky start and intentions? Maybe what is bad turned into something good? But there are still those lost chunks of childhood I missed. There are still aspects of life I grieve for. I didn't realize I would have to face them years later as my children grew.

I didn't realize that they held me back from some life choices I would otherwise have. Maybe in my dreams or somewhere I previously knew... I will find that what I am missing and that it lives inside of me...but right now I just feel it's missing. And the longing for a pregnancy, labour (yes even labour if it's like my third) and child (not baby exactly) are my mind's way of trying to remedy that? I can't figure out if I am choosing the possibility of it as 'a no' out of fear or out of bravery? Sometimes it feels brave that I am saying no to a deep desire out of repercussions for the children already in my care. Sometimes it feels cowardly because I am scared of death, body long term effects (like fallen bladder or other labour related tragedies) and mental harm (post partum depression.)
Six months pregnant holding my daughter

A good friend encouraged me to birth creativity instead. I am a strongly creative person and thrive on various changes I make. I have done this in many ways and it helps but it's not ending my obsession. When I read the article cited above about the mom and her daughter, I spent the next day resolved in my heart to just concentrate on what is in front of me. Being a future orientated person that is not easy- I like to plan. So I painted my son's room. Then I painted some more. Then I re arranged the living room and read 5 books...I see now why sometimes my Aspergers gets mixed up with Bipolar mania. I do have phases...yet the creativity helped save my sanity. (I can relate to my Bipolar friends a lot and I feel for their journey yet they teach me more about the sanctity of life than many neurotypical people at times...)
She loved kissing her baby brother in my belly and feeling him kick.


"So when you need her touch and loving gaze
Gone but not forgotten is the perfect phrase
Smiling from a star that she makes glow
Trust she's always there, watching as you grow

Find her in the place where the lost things go."

I love that these last lines can be about a physical person lost yet found or an idea...or a past self. Right now it applies to my past self, that 20 something gal who didn't realize how much trauma affected her. Maybe she is smiling at who she became? I often picture myself coming alongside her at those birthing times and saying, "It will be hard, some moments you will fail or wish you could have chosen something else. At other times you will be so fulfilled the greatest films could not express your joy, but you will become, dear one. You will live through this too to see them grow into beautiful people. You will even find yourself while the lost things go and hide until you are more able to deal with them in a softer glow of safety. "
Moments with her.

When I look at photos I see immense joy and satisfaction. I know I struggled but I also know that within that, I came home to myself when I held each of my children. I wish I could have made the earlier years less about me and more about them in regards to less anxiety over bodily complications. I wish I could have been less tired, but don't all mothers? I wish I could have a do over with the same children and hold them even longer. I know without a doubt I savoured what I could. It was ever present on my mind and heart. Motherhood has been my sacred struggle and sacred Being. I never knew it would be the role of my lifetime.


Last week.

Maybe what I'm missing is inside of me? Maybe we will eventually add more children in some way or another? Maybe we never will and find new ways to grow, but regardless, I have to honour the places where the lost things go. And when they are found it is important to speak about them, process them and find replacements to some while holding on or letting go of others. I have no answers for myself right now but I have a song of expression...and that helps. A little at least.


Thursday, December 27, 2018

Autism At Christmas, Masking and the Flame Of Beauty In Being Different.




I have never written about being Autistic at Christmas. Because Christmas is my favourite holiday and I have not wanted to seem like I am complaining or add any sort of downside to the beauty. Today I caught myself on that messed up, worldly logic. I was viewing Autism, once again, through the lens of "other ness" instead of the organic, every day experience it is for me, and thus, part of Christmas too.


Michelle Swan recently wrote HERE (Click): "I am autistic.  Everything about me is autistic. I do everything I do autistically. Over my 44 years I have learned, often quite deliberately, to do things in ways that you will interpret as “normal”. But, I am still autistic, even when you can’t tell I am by watching my behaviour. I am using a strategy called masking to blend in. I am passing as non-autistic. The masking that I do is for your comfort and for mine. It is for your comfort, in that when I seem to be “normal” you aren’t scared of me, you don’t feel a need to find explanations for my behaviour, and you don’t feel a need to go out of your way to support me in anyway, or to have to do things to help me that you might find inconvenient. It is for my comfort, in that when I do not inconvenience you, you treat me better- you speak to me kindly, you value my words more, you respect me. When you don’t know that I am autistic. You also expect more from me. You assume I am capable..." (https://hellomichelleswan.com/masking/ )





Christmas is my most wonderful time of the year. My husband teases that it is my essence of "innocence, sparkles, colour, gifts, and childlike wonder." Basically I can relate a LOT to Elf. 
We do the Santa experience with no shame, full blown...it's all about WONDER for our family. Unlike Halloween - click HERE (which is my next favourite) or Thanksgiving (click here), I do not experience the same level of sensory burn out, because my inner self lines up so closely to Christmas that I can tolerate more 'Holiday.' Yet, I am still me. As Michelle continues to write HERE, "But it is a double edged sword. Because I am not the same as you. I am autistic. So even though I might be able to make myself appear to be like you for a while in most situations and contexts, there are some things I just cannot do, and some I can only do up to a certain point before my resources are stretched beyond capacity and I can’t mask my autisticness any longer.  I know what the social expectation is. I just can’t always meet it. I feel upset about it. Embarrassed. Ashamed. My internal self talk mimics your outward expressions, “you can do better”, “pull it together”, “come on Michelle, try harder”. Just like the knowledge that people want me to be a certain way, I take it on and internalize it. In the same way that almost everyone around me unintentionally taught me as a child that conformity is the goal, I reinforce to myself that I need to be what you expect. "


To illustrate this point, I will take you through some beautiful moments this Christmas, with photos to enhance the experience, but give you my version of what happened and the miscommunication that can occur along with the immense beauty involved:
Pictured above, we went to a market place with my husband's side of the family followed, later that week, with a sleepover at my sister's home. Following the Market, we walked around a Mall for about an hour enjoying the Christmas Decor and festive spirit. I was prepared for the onslaught of sensory and knew it would be a insanely busy near Christmas. I have also been depleted in my iron stores at the lowest I have been all year and knew that I would have to really up my acting game to seem energetic. I BROUGHT the energy, the conversations...and some of my quirkiness, because when I am trying that hard, some of my normal self will inevitably seep through. As we were walking with my husband's sister, children and father, I was chatting happily, while my children were steering me away from close, crash collisions with passerbys. I was completely oblivious to anyone in my path. This may seem rude to those I am oblivious to, but it is honestly because my executive functioning can not comprehend one more aspect of the outside world. I felt proud that I was carrying on conversation even though I felt like my coat was so heavy and taking each step was painful drudgery. I was proud that I was breathing normally even though my heart felt it was working extra hard. That I was taking interest in what they enjoyed while acutely aware of the sounds of people and the echoes amplifying, smells of popcorn, B.O., foods, soap stores, plastic ect. The sensory that most people can tune out after adjustment, I am continually CHOOSING to ignore or at least push back into my peripheral. So of course, some of my normal checking of what comes out of my mouth also does not get censored as much as usual. AKA what my family lovingly dubs "quirky behaviour." 


I was in the middle of talking with my nieces and nephews when I spotted striped pants in a window that reminded me of Katherine Hepburn's style in "Bringing Up Baby" or "Philadelphia Story." Because 1940's/50's were the MAIN obsessions of my youth, anything related to that period, especially film wise, will probably bring out my off the cuff comments. In the middle of a sentence I turned around to my husband and his sister and father and without taking a breath I pointed and exclaimed over the heads of people weaving out of our group, "LOOK BABE! It's Katherine Hepburn pants!" and then I promptly finished the sentence I had started before about school with my nephew and niece without missing a beat. But all of their laughter registered in the back of my brain enough that later I asked what was so funny. My husband replied, "We all just think you are adorable that's all. My sister laughed and told me you were really cute. It's your joy and obliviousness to the fact that most people do not act like you do in public places I guess." I was flattered that I was thought of cute which is better than what I used to be thought of ( snotty, aggressive or rude.) I also was baffled that it was a big deal. I thought I was doing SO WELL at being normal:) I surprisingly enjoyed myself for all the exhaustion I felt- seeing all the Christmas lights and sparkles kept me full of joy and comfort. Normally I can barely tolerate Malls, but at Christmas, I can focus on what brings me inspiration and enjoy. Yet, even with a positive experience, it still took me three days alone to recover from a good time. 

Pictured above is my younger sister with me...she is a decade younger as evidenced by the lack of wrinkles opposed to my frown lines. In some ways it is is clearly obvious I am older and more experienced, but in other ways, she will always trump me...for instance in the genre of "capability." I can't drive myself anywhere, go to appointments by myself, or cook for myself...which severely limits me and what I do. She of course, does all these things. We decided to spend the night at her house because we had appointments the next day in her vicinity.

In the evening we took a drive, after getting our favourite Second Cup Coconut Lattes and viewing the richest homes decked out in lights and Santa themes. It was magical. As we were driving though, we passed a dumpier part of town and on my left there was a dilapidated building with a shabby light that read, "Virus Removal." My brain was trying to figure it out, but it took the Aspie/ Autistic literal route and I blurted out, "VIRUS REMOVAL?!?!? People actually BELIEVE that? How can that be a thing? How is that legal?" and everyone died laughing. I was still confused and thinking in my head that anyone who was innocent ( and desperate) enough to go there looking for a cure would walk out more diseased than they already were. But on the outside, I was laughing heartily with everyone else, because I have learned that once the situation is explained to me, it's almost always funny, and I may as well laugh WITH people and understand that it's not AT ME per se, but more enjoying me. (At least that is how I choose to look at it.) My sister, between laughs, explained that it was for computers, which still seemed sketchy to me, but it was better than the image I had in my head of a rusty needle puncturing someone to extract an unseen and incurable virus out of their blood.

Later that night at the sleepover, my children slept soundly and I was awake till 6:30 AM. I was sick, exhausted and panicky. At 5 am I had to keep repeating, "You are brave, You can do this. That sound is just her furnace, that smell is the food being cooked from the people upstairs, the flashing light you tune into every few seconds is just the smoke detector, your stomach hurting is from all the mango you ate at supper!" Even though I love my sister's place and felt completely comfortable and taken care of with my husband and children beside me, my sensory system was on full threat alert. For anyone who has watched the movie, "Temple Grandin" with Claire Danes, It was akin to that moment when she walks into her room, which she has loved for months and it feels like a horror film. Because the maid had left the fan on, and suddenly the curtains were swirling and her room looked foreign and scary... She runs out of the room screaming with her hands over her ears and enters full meltdown mode because her brain can not make sense of the "new" environment. Gah, I was SO MAD at myself because each time I would almost relax, something new would get my attention. I was exhausted and close to tears because I was supposed to be sleeping so I could have fun the next day. I was "supposed" to be "normal" and be having a fun excursion. 
How was I supposed to be able to visit my children in the future if they do end up moving out? How was I supposed to do future hospital stays with whomever may need me? How was I supposed to travel if ever the need arose? These questions were running over and over in my head. I felt all of my disability and then some...YET, I also kept telling myself, "Yes you may be disabled in some things but you are so capable in others...Why must this define what you can do?" To which my other voice would reply,"Because it's ridiculous...it's supposed to be so simple. You are in your mid thirties, gave birth to three and was pregnant five times, have a beautiful home and are respected among some of your peers yet you CAN NOT sleep over at your sister's house without a full blown panic attack and being up all night!" To which my compassionate self would reply, "Go to sleep, it will be better in the morning. You can do hard things. You are brave. Difficult experiences to someone else would be a walk in the park for you...it's all relative. You are brave..." And then my other voice would show up again and on it went for hours and hours and hours until I was so sick, the thought of an inevitable hospital trip ended up shutting my brain down at 6:30 am till I awoke at 8am.... 

And yet, despite that terrible night, I ended up rocking two medical appointments, one of which was being poked by a needle over and over again, and the other was my daughter's ultrasound to which the technician was so impressed by my ability to read the ultrasound behind her that she gave me all the information I asked for. I recognized a cyst and asked the type and she replied, "Wow most people don't see that or understand the anatomy of ultrasound. Yes you are right that is a hemorrhagic cyst that just burst recently..." And normally ultrasound technicians are not allowed to discuss any results but because I was neutral about the subject matter, could keep up and was curious we discussed the entire process like two co workers would. This was followed by an insanely packed trip to Costco, where yes, I did walk around like a zombie and I don't even remember how I managed to walk out of the store, on one and half hours of sleep, but at the end of the day, I knew I was different... Which should not shock me as deep down, I KNOW it, yet somehow it always does.



Honestly, sometimes I don't wish to write about these topics because I don't want people like my sister who reads my posts sometimes, to think I had a terrible time. I don't want the situation to be marred or viewed as me complaining. I also prefer to focus on the positive with the people I love. I had some lovely moments during the sleepover. I also don't want people to stop inviting me even if I say no, because of course, everyone deserves to be wanted by those they cherish. YET, so often I don't have the words at the time to express my needs or inner thoughts. Autistics often communicate best, if they can, in writing, and it would be a disservice to my children who have similar struggles, but do better because of THIS factor, to know my inner process too.
Leading up to Christmas I went label crazy. I repainted and labelled my entire pantry, cupboards and fridge. My husband thought it was a little OCD, but I enjoyed it. For me, cleaning and organizing is an energy outlet when I feel there is a lot going on. Even if it's all good stuff. I needed the "down time" of cleaning and painting while pumping Christmas tunes. Readying my home is preparing my spirit. We re did both trees twice ( and a third time for the living room due to burnt out bulbs!) But each time I savoured the process.




 Yes, that is the Balrog sitting on top of our Library Geek tree....


 My Jewellery tree in our room even got some Christmas love.
Our living room got done thrice but I loved the result.


Unexpected gifts in the form of iron keys, sunshine and twinkle lights are some of my favourite things.


 Each child made their own Christmas Trees out of tomato wire and garland and decorated them for their rooms:
This season was full of beautiful little moments. The snow was fantastic and dreamy whilst Christmas tunes were played, the kids enjoyed home made baking, and we had many moments of ordinary bliss. I love my life. But I love it at home. I don't seek many outdoor adventures nor need to travel to find beauty and wonder. 











 The Season for me is opening our gifts to the children early because at Christmas it is too much and I want them to enjoy singular aspects. It's about Christmas PJ days and reading in the library, having the people we love over or going to their homes...but yes, in all of that, I AM still Autistic.

 What shocks me the most is my unexpected outbursts. It takes me a lot to get to a moment when I have no control or many little moments that add up to suddenly snapping at something that seems insignificant. My mother called to discuss the menu for our PJ opening night at her home on the 23rd. She was on speaker phone and I over heard her telling my eldest son that we would be having cold cuts, veggies and cold fruit. I yelled, "No!" so vehemently and angrily she went silent on the other side of the line. My daughter's jaw was open and my husband looked at me like I had grown another head. I didn't have any words of explanation nor could I communicate my distress nor did I fully understand WHY I was distressed. My mom said we could discuss the menu later and promptly hung up while I endured the censorship of my little family. Finally, almost in tears, I figured out why I suddenly had a violent aversion to cold cuts. Half an hour later.... "It's just that summer is great for that menu but in the winter it makes me feel cold and yucky. I crave warmth and on a special night it should be food that matches the Season. We can tell her we will eat at home first if it's too much work but I just can't stomach that food." I felt embarrassed and six...but it was what it was.







I knew I was being completely Autistic in my aversion but the thought of that meal made me want to hide in my closet or throw up. I still can't fully give the words as to why but it created such a visceral response in me, and after days of outings and being at the mercy of many people's wishes, I finally wanted something that felt like HOME outside of home. My mother ended up being great about it and we had a lovely gluten free brunch for supper. My husband teased that everyone bends over backwards for me, which stung a little, because there is truth there in some aspects, but also there is the fact that I am continually doing THIS for other people. 

"My behaviour will change from what you have come to expect from me. You will call me “angry“, “clumsy”, “antisocial“, “rude”, “awkward”, “aggressive”, or “weird”. If you bring it up with me I will sometimes just say “I am tired“. But I am simply being autistic in public. In a child it might look like a tantrum. In an autistic adult it often looks like a sudden withdrawal with no explanation. It often looks like unexplained tears that you assume are unjustified because you don’t see the reason for them. You might call them weakness. They are not. They are a sign of strength and determination. And even the tears are for your comfort. They are what happens when I know I have to shut down for my own health and safety, but I choose not to in order to do something you expect of me. And later, when I am alone, I feel intense anger. At myself. For choosing you, again, over my own self care. Because my masking isn’t honest and it lacks integrity. It hides who I am. The benefit for me is short lived and fraught with complications. There is nothing wrong with me. Nor any real reason why I should change myself to conform with your standards of normality. It is a burden that I carry for you. And I wish I wouldn’t do it." (https://hellomichelleswan.com/masking/)







It's not that I wish to be understood by the world because that would be boring. I like to be mysterious. Sometimes sensory things excite me or do the opposite of what they normally do and I do not wish for people to expect the same reaction because it's not always true. I like protecting my privacy. I don't share my inner process to anyone verbally unless it is my husband and children or rarely some of my closer friends... Because I process inwardly and work things out on my own. However, on writing occasionally I share timidly, not to be asking for special treatment or even help. Because I crave independence. So often it is taken away from me in many aspects so I keep what I can keep or do...Sacred. I know I am also strong, capable in odd ways and add value to life. I LOVE LOVE, LOVE my life and do not wish for posts like these to be misconstrued as dissatisfaction. SO why? Why write about my favourite season within this lens? When I could have talked about all the beautiful days we had or the fact that we have had people over EVERY single day for 17 days straight and despite being an Introvert and Autistic I have enjoyed most of it and been hospitable and received as much as I have given? Why discuss Autism at Christmas when Christmas is when my spirit comes alive and everything seems merry and bright or if I am struggling, it still seems to be a different sort of dark beauty? Well, it seems I just answered my question within that last question.


Christmas is still MY experience within a different lens...and maybe, just maybe, it's another person's too...and perhaps the more stories are being told all over the web, from fellow Autistics, the more differences can be at least tolerated instead of viewed as rude or aggressive or ignorant?





In the end, the moment pictured below sums it up. I was freezing, drained and my executive functioning was not computing the fact that I could go get a sweater or a blanket ( it never does...if I am covered it's because my family notices I need something warm.) I noticed the fireplace in the Kitchen was on from lunch so I plopped down in front of it and was texting my bestie. I was snapping a picture to show her where I was, when I realized what an interesting picture it took. I was surprised to see my reflection. So I snapped a couple more and was pleased at how the tree was captured behind me and I did not look as tired, cold or as different as I felt. In fact, I looked like I was purposefully posing and a completely "normal" individual. I loved that the picture did not show that I was just about to tear my earrings out because they were driving me nuts or that my legs had missing shaved spots because that often happens with executive functioning or that my deep wrinkles were not super harsh from barely sleeping the night before. I loved that the oranges were peaking through on the cupboard speaking of abundant choices and that the fire in the reflection reminded me of one of my favourite songs when I need a little self, pep talk, "This girl is on fire...She's living in a world and it's on fire, feeling with catastrophe, but she knows she can fly away, Ohhhh oh oh oh oh. She got both feet on the ground. And she's burning it down. Ohhhh oh oh oh oh. She's got her head in the clouds. And she's not backing down. This girl is on fire. This girl is on fire. She's walking on fire. This girl is on fire..Looks like a girl, but she's a flame.."


To those girls and guys on the Autism scale, or any place of difference really, I hope that you can celebrate yourself in any Season, while also being aware of the moments that may make you stand out. In this Post- Christmas Season I hope there are still glimmers of magic, cozy fires and subtle flames that highlight home, belonging and comfort. 
With Tidings of innocence, joy and WONDER.

(Videos of the last part of our Yearly Tradition of reading "Twas the Night Before Christmas" on Christmas Eve, taking turns as a family reading...it's neat to see the growth and differences from year to year...and I am generally exhausted every time we do it and wanting it to be skipped!)