Friday, April 13, 2018

"You are TOO much" or "Your Posts are too Lengthy" or "Why Don't you Privatize your Space?" Addressing the Nonsense Geared at Minorities/ Autistics/ INFj's. "This IS me."

Over the years I have received various opinions about my thoughts. There are three negative statements however, that have been more prominent. After I receive this feedback, I will force myself to take a breather, accept the honest opinions of others as their own, and question my reasoning. Here are the top three statements and how I have dealt with them internally;

1.) "Your Posts are TOO lengthy." "Can you work on shortening your words for ease and accessibility?" Or my absolute favourite, "I could have read the whole thing, but it was too long so I stopped. It was fine and well written." 

Erm okay? So you were interested and you COULD have read it, but on the principle of the matter (it being too long) you decided to stop? It is one thing to stop reading because you simply don't have time. We all have to consider our time. It's our greatest gift. I respect that. I skim all the time - even my own stuff. Skimming is a gal's best friend.

But why tell me that MY communication needs to change. This is my process. Just skip it or skim it but why tell me what to do? This is particularly irking, if I wrote a post FOR or TO someone and they give that feedback. Immediately, they are downgraded from my circles of sharing or importance. Not because they didn't have time, but because they clearly did not respect my time put into trying to make their world better. If they don't read or skim that is one thing. But bossing me around to communicate just like them is not ok.

They can give negative feedback in dialogue, but that is another matter completely. When this happens to me... If I have something to read that I don't always have time for, I will consider the other person's personality differences, skim what I can, pick two points that I can give positive feedback on, quickly write a response, and send immediately so I do not forget. Because if a person is important to me, I can give them a few minutes of my day every once in awhile. I don't expect this type of feedback on every thought or post, but yea, if it's been awhile since I connected, I expect myself to acknowledge a friend's thoughts and existence. (P.S. This has NOT happened recently with posts. My cousin's Ferritin post was well received:)

First off, there are years or posts that I practice concise, shorter writing. But other years or posts are about my process. Which is long, speedy, and already cut in HALF by the time it gets to the page. That is just who I am. Other Aspies have also blogged about this issue. We have so many internal thoughts rolling around, that we need an outlet. Often our outlets are writing or monologuing. Both of which we have received flack from the outside world on more than one occasion.

This is nonsense because I have never claimed to be a "professional writer." I am a writer, for myself because I engage in writing. I also then hope it can help someone who maybe had similar experiences. End of story. I am not on board with perceptions of how things "SHOULD be." However, I AM aware of my readers, thus at times I will go out of my way to edit a post in half, or in hindsight go back and make cuts. I will also sometimes make underlined headings so that people can skim or skip to the parts that are relevant to them. In the end, this space is a healthy spot for me, to get out thoughts or words that I do not often have a forum for otherwise. Because I get inside my thoughts and it is hard to find a way out, detailed writing provides an outlet. It also depends on what type of post I am writing.

I understand accessibility and feel it's important. I do it in the ways that I feel I can. I have limited energy. Writing a long blog post surprisingly restores my energy. But notice, that I do not actually write captions explaining pictures ect, like most Neurodiverse blogs do. I just can't. That stresses me out, and unfortunately drains the energy I have for my family because of chronic illness. I will not be accessible to all people. That is just how life goes. I will try my best in the ways that I can. I will sometimes stretch and grow myself. I am finely in tune and honest with whom I am. I know what I am or am not capable of. I know when to choose the tough path or the easy one. This blog is primarily for enjoyment.

2.) "You are TOO much." Or "Just get in the boat!"

I realize the second statement seems semi unrelated, but these two statements are what I spent the better part of my first 4 years of therapy on. As a child and teen, the people whom I was told loved me most, the ones who protected me or took care of me, or witnessed my life, regularly gave forms of these statements to me in some way, shape or form. Even if they complimented me on other areas or deeply loved me, I learned two facts quickly;
I wasn't fully accepted for whom I was deep I learned to mask and conceal. I became Elsa. Second- I had no real autonomy. If a sensory experience was "too much" for me, I just was ordered to "get in the boat."
I was told my fears of water were unfounded but actually, they were quite logical. I was continually asked to ignore my own internal process. I was told that my thoughts or feelings about something were "unrealistic" or "too dramatic." This created a dangerous position to be in. I did anything a doctor would tell me to do. Much to my detriment. I just listened to people in certain positions of power, not because I agreed, but because I doubted my own experience and defaulted to "professionals." Luckily, I learned about personal autonomy gradually, beginning with the birth processes of my last two children at 20 and 24, but did not reach full autonomy until about 26.

I now understand that this is also nonsense. Why do these statements not hold up? Because I was already an anomaly. I was a minority so my experiences were considered illegitimate. But that did not mean that I had no meaning. Or that I was absurd for being me. What was absurd was expecting me to conform when I was clearly not fitting in every step of the way.

I also understand WHY this happened. I can look back now without feeling the absolute grief I used to about childhood. I used to feel embarrassment for myself and the others involved. I used to feel deep pain for being ignored where I needed attention. I used to feel disrespected. I also felt paranoid about my way in the world. My anxiety was heightened because I was constantly given mixed messages of "You are loved" but "Don't be like this, don't be your truth." Of course, this made me question whom I was and it took years to get to know myself again in my later twenties.

In the end, I worked through blame, criticism and pain, to realize it was not my fault, and it wasn't any of my caretakers' faults or those who loved me. Did I still have to deal with loads of memories and relationships in therapy over the years? YES. But, I also started to unravel the deep wounds. Because, the fact is, when someone or something is not understood, they are contained or feared or forced to become something else. Naturally, that is what happened to me. My real fear of water was written off as trivial. I still can not think of swimming lessons without massive palpitations. I was told to "DE -sensitize." A favourite term of ABA specialists and "normal" people. But de-sensitizing a logical fear or something that makes sense, as a reality, or a phobia, will not work. It's like calling people who are germ adverse hypochondriacs. When you look at the history of the world, more people have died from disease than any war. Most wars were also won BECAUSE of disease. It is a fact that if the world is going to be wiped out, it will be more likely from disease than a nuclear bomb. Vaccinations happened the same time as advanced hygiene. Disease went down due to the hygiene factor more than the vaccinations (although some of these were a huge advancement.) This is simply logic. So it makes sense, if one cares about longevity, to be careful about hand washing, contagions ect. It's cold logic applied with practicality.

My sensory experiences WERE legitimate. (Check out the Sensory posts on side label. Especially the Halloween HERE or Thanksgiving one HERE.) Just because over 80 percent of the population May not feel the same, does not mean the other 20 percent are not legitimate. Or insert whatever statistic you like. There ARE exceptions always. One reality does not negate another. Being forced into a boat, being told to ignore it, getting in trouble for wanting to throw up from a noise, being told when the worst of sensory would bombard me and I would cry, that I was "Too much" contributed to the massive self esteem issues I began to have at the tender age of six.

Oftentimes, certain personalities are more prone to comment this way on my persona. Usually it is unhealthy persons who have not yet known themselves. Also, the majority have been ESFJ's. I now know why this is. A close friend is a pretty balanced ESFJ. We actually get along well in moderation. Our processes are different but we can agree on harmony. However, ESFJ's can feel frustrated by the individuality of an INFJ, as they are more for the collective good. They do not always love exceptions to rules, which INFJ's often portray. Also, the aura of mystery can feel devious to them at times, as well as the fact that INFJ's give advice. Advice feels like being bossed or feels degrading to many ESFJ's. Thus, my natural personality could be continually offensive. This is ONE small example of how personality understanding takes most of the pain away from a statement. Because when understanding to context is applied, then it feels less personal. (See THIS and THIS and THIS video on ESFJ's process.) This can also happen in ANY personality type and engagement.

Today, if I get these statements, I DO initially feel the pain again. It's like a battle wound that has since healed completely but still receives phantom pain or has arthritis when the weather changes. I have to tell myself, "Those are messages from people who may not give deeper thought to what they say. Perhaps they lack self understanding or the larger picture. Maybe they are wounded too. You have dealt with this. You may be too much for some people, but for the few who matter, you are just enough. You have your mistakes, you have your flaws, but you are still worthy. You have strengths and you have disabilities. Remember that a large compliment is just as damaging to the ego if massively internalized. People are fickle. Opinions change. Both the good and bad opinions become neutral when one knows themselves. Enjoy the good but don't let it blow up ego. Question yourself with the bad. Then question the person who said it. Give grace when possible or contextual. Apply boundaries or distance when needed."

"Look out cuz here I come. And I'm marching out to the beat I drum..."- This is Me.

3.) "Why Don't you Privatize Your Space? If you value privacy so much, why not take it private. You share too many personal things that should not be processed in public."

This statement I have only received 4 times. Once, it was said to me via email, when someone who did not even know me well, read my blog, made some conclusions about me, and decided to confront me. Though it was audacious, it was also a form of brave, so I gave her my time. She was a worker at the local school who had witnessed aspects of my life growing up, but had yet to ever have a personal conversation with me one on one. Thus, I took that context into consideration when reading her words.

"Hide away they say, we don't want your broken parts...Run away, they say, no one will love you as you are.... but I won't let them break me down to dust... I know that there's a place for us." - This is me 🎶

To be honest, I had to ask myself the same question the day I started this blog. I have had multiple blogs, switching when each one became well read. I have had two private spaces as well. In the end, I have settled on this place the last few years. It has felt like home. I try to keep posts to 2-6 per month because I am aware I give lots of information, so I try to not overwhelm on a daily basis.


The reason I keep it public? In the past, I have received emails from strangers, connections, or statements in the comments, about how one post changed some one's complete way of thinking. I have been often asked to write self help. It's not so much about my actual writing, as it is, I think, about my way of being in the world. My honesty with self, tends to help others be honest with themselves. A comment I have received multiple times in the last two years alone. As an INFJ, that matters to me. If I went private, I would neglect to give to the people who need this space in some way. Those who are irked by 'me', can simply close their browser. Walk away. Those that either love me and want to know my inner workings a bit, or those who are just curious to learn, or those who are looking for something specific like my health journey, can search and find. That is important to me. I feel I can give to a few people in the world this way. Actually I KNOW I can. Just because the majority find the information "useless" or "too much" or makes them uncomfortable, does not mean I am not giving... in my own way. That is what true inclusion is. Allowing people to be whom they truly are and respecting them for it, even if it is not typical.

I write primarily for self first. For healing and processing. I need to write occasionally to understand. Once I put it out in the world, I feel better. It's a letting go process. But secondary to this, my writing is for the few who maybe grew up like me. With beautiful childhoods that still caused massive damage. With internalized confusing messages of whom they should be. I know I am lucky to have 13 plus years of therapy, diagnosis, self help books, researching and a good support system backing me up. I feel it is important to spread that support a bit, because I have it. It's a privilege that I can share in this way.

Private blogs are important. We all have differing processes. This space is just the tip of my daily life. My inner processes are so much more complex. For instance, this blog post alone only took 20 minutes to write. What takes longer is editing, finding a song or picture and emailing out to the list of a few people who thus far have not said anything that would stop me from sharing. Although certain posts I do not send to anyone and let the finders find, while other posts I have differing email lists (that I unfortunately sometimes mix up. Yikes.) My main cognitive function is internal. Which means that my inner world is more of a reality to me than my outer surroundings. For people with the opposite personality functions this sounds ridiculous. But, from my context, I understand their mentality but I also could never live in it either. Add to that, Autism and being an INFJ, and my internal process is probably more intense than most other people who share the same functions...unless they are also differently wired or own an intense, internalizing personality.


"...🎶 Another round of bullets hits my skin. Well, fire away, cuz today, I won't let the shame begin. We are bursting through the barricades and reaching for the sun. We are glorious. Yea that's we've become. I won't let them break me down to dust. I know that there's a place for us, for we are glorious. When the sharpest words want to cut me down. I'm gonna send a flood, gonna drown them out, I am brave, I am bruised, I am whom I meant to be. This is me. Look out cuz here I come. And I'm marching out to the beat I drum. I'm not scared to be seen. I make no apologies. THIS IS ME....And I know that I deserve love. There is nothing I am not worthy of...This is BRAVE, this is BRUISED, this is whom I'm MEANT to be. This is ME...I'm not scared to be SEEN. I make NO apologies for this is me...."- Keala Settle and Cast.*
**"🎶Oh life is waiting for you, it's all messed up but we're alive🎶..."

*"This is Me" was my second least favourite song on the "Greatest Showman." Although, I loved them all so this was a tough call. LOL. While I felt it was good and beautiful, it didn't feel too applicable to my current journey. My self of 25 and under? Definitely. I would have probably blasted this more than "Defying Gravity." But with a lot of personality study and different wiring, I have more of a gentle acceptance of whom I am now that I don't need to prove, but in writing, for those who are still coming to terms with themselves, I make sure I take a strong stance of worthiness and explanation. This song fit perfectly for those who are still learning they are worthy because they exist. Don't be scared to be seen. In short, that is why I keep up this blog. I am not going to quit out of fear. If I quit, it will be because of a new phase in life and not for others qualms or internalized self insecurity.

Song Choice: This is Me- Greatest Showman

Life- Our Lady Peace (the lyrics to this song helped me get through Junior High.)

Misery- Soul Asylum

Loser Like Me- Glee:

Thursday, April 12, 2018

'Operation Low Ferritin' Game Plan/ Whole30 Reset/ Kelp and BC1/ Life Enhanced by Self Growth and Lists/ I can not be Wonder Woman.

*Dedicated to Atlanta Rae :)* Also these are my experiences and not to be used for medical advice but as stories and encouragement. It is important for you to make medical decisions based on what you can manage. Your life, Your body.*

My cousin has a Ferritin of 12. Mine is at a 4. She recently visited and we spent most of our time together laying on couches watching movies, reading or chatting...and then needing to lie down and recover from such 'strenuous' activity. If you have had Mono, then you can imagine what a Ferritin below 20 feels like. Except it's more constant and without the fevers, but it feels similar. When I had both Mono and Low Ferritin I was surprised I was alive, every day upon waking. When I went to bed, I could only congratulate myself on getting through the day.

Because I have struggled so many years with low Ferritin, I know what I will and will not do as far as getting my levels up. I have tried almost every form of iron out there. I have changed diets. I have seen my Naturopath. I have done the Iron needles (BIG MISTAKE), I have been offered the Iron Infusions and Blood transfusions. I said no, after extensive research. I still do not regret saying no. The last time I was semi successful in raising my levels, I was taking organic well sourced Kelp, BC1 absorption salts, and had recently done the Whole 30.

It's time for another overhaul. I will link back in a few months with the results (most likely closer to mid summer after blood work.) But here is the tentative game plan.

'Operation Low Ferritin' Game Plan:

1.) The Whole30 Reset. Our family did the Whole 30 a few years back. The first week was tough but we LOVED the remaining month of eating clean. After the first bit of feeling terrible, we gained energy, lost a bit of weight, cleared up varied issues, and became more aware of food. The results lasted a good year. Months after we slowly re incorporated foods but still felt pretty good and kept losing weight. We did end up gaining weight a couple years later, but some of that was 'grief weight' and medications combined with hormone/chronic conditions.

We will be starting the whole 30 in a few weeks, after we use up the Yogourt and Half and Half Cream in our fridge for our coffee. We budget for groceries and do once a month shops, thus we can not afford a reset until we use up our perishables. Health is priority, but so are finances. We feel that this way we have honoured both. I looked into ordering organic veggies and fruits near us. Since we will be eating loads of produce our dairy/other grocery budget will go to this instead. (We actually only have butter, yogourt and cream for dairy, but for a family of five with a couple teens, this adds up to a couple hundred per month. Especially since we ate Greek Yogourt every day for breakfast and used it in smoothies.) The focus will be on iron rich veggies and meat with a bit of fruit. As a family, we feel this reset, discipline and the deeper issues of food with the Whole30 diet, together is immensely bonding and beneficial.

2.) Kelp pills and BC1. I am hoping that the Whole30 will help reset my gut bacteria. It did in the past. This may help me absorb better. I will admit, this is never a permanent fix for me. I still have other issues. But it helps. With the Kelp and BC1 from my naturopath, it should be easier to absorb the iron in my food. (This is also done with daily Vitamin D and C because I am low on both.)

3.) Iron tablet 2x a week. My Haematologist was horrified that this is all I'm planning to take, but I can't do more without suffering. My Naturopath took one look at the expensive brand of 150mg I was taking and exclaimed, "No wonder you felt poisoned." It was full of chemicals and dyes. I have since switched to another brand. It still affects me but I hope with the other 2 points of lifestyle change above, it will go further than expected.

4.) Treadmill for 20 minutes instead of 40. I will continue with Physiotherapy for muscle injury due to low oxygen. My physiotherapist monitors my exercise level. I am not allowed to be aggressive nor work on muscle strengthening yet other than the 20 minutes of walking a day. I also have to go easy on the walks. No cardio. Aggressive cardio at this point could equal muscle injury or heart attack or stroke. (All this information is covered in other posts of mine.)

5.) Sleep and rest as much as possible until the levels go up. I struggle with this point. I actually look pretty normal in my functioning to most people. I can go weeks without talking about exhaustion or low ferritin, until my kids and hubby even forget about the fact that it affects me. Since I have had it for so many years it is "my normal." I don't really want to be that person who says every day "I'm tired." Some days I do, but I bite my tongue a lot. Because otherwise I would be saying it all the time. I am bone weary done. I need to lay down after any activity. I go to appointments and crash at home. I am breathless after climbing my stairs or after shopping trips. But I mask some of this. Not because it's the right thing to do necessarily, but because it's been ten years. I can't make it always about me. But if you are new to low ferritin, TALK ABOUT IT. It's important that your support team know how serious it is. Your family needs to know how low functioning you will be. Back up your information with links and research. Understanding is the key to healing.

6.) Perspective and Grace. Daily I have to remind myself that I need to cut my ability to do stuff in half from what is expected. At the very least. When certain people give me advice I know I can not fulfill, I smile, say thank you and I find another way that I can manage. The body is low on oxygen. It's conserving energy. It's storing fat because the Mitochondria is not functioning properly. Try to reset gut bacteria. It may give you a boost. But don't be too depressed if it does not fully fix your issues. The results of gut bacteria are impressive, but life comes in dips and perks. Remember to balance quality of life with needed results.

Low Ferritin is associated with IBS, Fibromyalgia, Autoimmune Diseases like Lyme, and other conditions. You can not fully help what you have. It is NOT your fault. Despite what doctors may tell you about your diet or your decisions. Do these play a part? Absolutely. But health is a journey. I have tried it all. Yes, gut bacteria is a LARGE part of living healthily, but life still happens. Enjoyability of life is also a factor. It is important to try new disciplines and health res sets. The Whole30 is NOT a diet. It is a RESET. It's akin to a Elimination diet and each list of "okay foods" for your body will and SHOULD differ from another person's results.

Here are some more of my posts on Low Ferritin:
About the 120 Day Cycle of Blood and the Pros and Cons of Iron Pills

Catch 22 In Iron Health

How it feels when a Ferritin of 9 Drops down to 7.

The Happy Difference from a Ferritin of 2 that Ups to a 9

Anemia and Depression. How it feels.

A Brief Explanation of Low Ferritin

You did NOT cause your Condition

Low Ferritin and the MTHFR gene and Exercise

Life Enhancement and Choices:
I love having goals. I can't wait to get started on the Whole30 after I use up what we have. It has also helped me to make goals in finances, schooling, lifestyle ect. With low energy, it is important for me to pace myself but also be clear on what I want my life to look like and where I wish to use the limited energy I have. Recently, I created a calendar of such goals and it has taken a huge weight off my shoulders. I have lists for chores, small renos/maintenance, meal planning and goals, personal growth, kid's growth/ unschooling goals, exercise/movement, beauty goals, emotional growth, future finances, future job goals for the husband, and future time disciplines. Most of these list are focused on baby steps with SLOW growth and low expectations that are built upon as time goes by. Except for food...the Whole30 demands a full overhaul and starts big, but we should all have one aspect of life that requires more from us, right?

Life is enhanced with Self understanding, Self compassion, Self respect and Self discipline. We make better choices by knowing when we can stretch ourselves and when to go easier. The higher the awareness, the easier the choices. The enjoyment of my one beautiful life means discipline for health but also easy going acceptance. It is always a balance of both sides of the coin. Quality of life matters. But preventative measures against disease by food and movement also matter. Each person will have to find a way to manage stress and incorporate inspiration. In the end, I have to constantly remind myself that I am NOT Wonder Woman. As much as would LOVE to be her or I'd settle for Gal Gadot, I need to look realistically at whom I am and what I am capable of.

"... 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..."- Kacey Musgraves.

Bet all that gold gets heavy weighin' on her
I wonder if it's scary, always tryin' not to get hurt

Tonight, Tonight- Smashing Pumpkins

Tuesday, April 3, 2018

My NON Funeral Wishes. An Introverted, Autistic's thoughts on Planning A Death. Why I Don't Attend Most Weddings or Funerals.

I've always known I did not want a traditional funeral. Lately, we have experienced a few family deaths, along with my own health scares a couple years ago, which had me solidifying my plans. Each funeral has been an expression of the person who lived or their families' thoughts on them. In the ways they wanted to be expressed, each was beautiful. Today, I attended my aunt's funeral via Facetime from my sister. I even spent a bit of time 'hanging out in her purse.' Which seemed an odd commentary on our current culture but also refreshingly funny. She was so sweet to hold up the phone for me during the tributes. My Uncle's was heartfelt and lovely. The funeral honoured my Aunt's planning and wishes. In that it was heartfelt and inspirational. When I am thinking of my own end, I have had to think upon what would be meaningful for me.

A few years back, my husband and I were driving past the local graveyard and I said, "I always hate driving past here because I picture my bones in that ground and I dislike that thought." To which my husband replied, "You don't have to be there. You could get cremated and request your ashes in our yard or other meaningful places with just the kids and I." And suddenly, driving past the graveyard never bothered me again. I felt so free. I knew I would not be there. I loved the thought of my ashes being by a tree in our backyard or some other place. I felt at peace.

Death is different for everyone and we all need to make choices based on whom we are. I don't think it is bad for people who have chosen to be buried nor do I judge any other deathbed wish. I know, for myself, what I feel better about, when I look to the end.

To me, Weddings and Funerals, are eerily similar but one focuses on celebration of life and the other of death. Actually both celebrate life in different ways to a degree. Both involve mourning of old ways and change. Obviously, there are also key differences. I didn't even enjoy my own wedding, although it was charming and the work all our loved ones put into it was appreciated. However, I love my marriage. My extended family now know that I generally will not attend most funerals or weddings. I am supportive and if I get invited and am close to the people, I will send a large gift and make sure I celebrate or mourn with them in alternative ways. I have a few exceptions to this that are contextual and circumstantial. If my children choose large weddings or funerals I will absolutely be there and honour their wishes.

For years I could not even look at Wedding photos without feeling sick. I would also feel inferior, yucky and socially inappropriate thinking back to "my day." Now, with more than 16 years behind us, I can look back with time, a bit of maturation, and knowing myself, and have a differing perspective. I also see how much everyone tried to make it splendid for me...and in that it WAS beautiful. I didn't know myself, so thus others didn't know what I needed either. We all thought it was an expression of whom I was then, and no one can be blamed, including myself. Thus, now I see the photos, where I know I was pasting on a smile, because I remember being so sick and just anticipating the days' end, but instead of it reminding me, like it did in past years, that I was a fake or a failure, now I see strength. I see a woman who tried her best to make everyone else feel good on her day. Because she noticed the effort involved even if it was making her sick. I see a woman who could not wait to have the day over with so she could start a life with the one she loved. But, I now also see all the people, who were having years past it felt like it was at my expense. Now, I see that it's just what cultures do and it was supposed to be a gift. So I will now take the gift with mixed emotions. In it's time- it was beauteous and pleasing. 

Every single person who sacrificed their time or money, behind the scenes decorating or making food, to make the day special for me, I deeply am thankful for. I can think of each of their faces, and the varied ways they gave to the best of their ability. Within that, the day was a gift. Would I do it differently now? Absolutely. But if I did it again, at that young age, in the same context, I know it would be the same. I now look back and realize it was what it was, for the time that it was, and unique and appropriate in it's own way. What I DO like, is orchestrating photos, even if I am pasting on a smile. Most of the candid photo time that I have with friends or family, is a fun time for me. We end up laughing a lot or enjoying our time, even if the photos are purposeful. If I could now, I would have a small gathering for a wedding but still have a photo time. I love that in my pictures I can see my cousins and sister...In the photos they do not even come up to my shoulders, but now most of them are taller than I am. I love to see the way we were together, because it triggers one on one memories, that I had with each of them that may not have been captured on camera, but were meaningful to me.

I am Autistic and experience painful sensory overload. I can also be socially awkward and make things accidentally worse for people. I also am an Introvert who dislikes large gatherings. My therapist told me a few years back, "I also have a family member whom is sensitive and can not attend these functions without getting very sick after and paying for it for days. You do not have to attend the big moments in life for people. The people who love you and who you truly love back, will feel important if you show them in daily deeds and little moments your care. If you don't attend a funeral, then send money, a gift, a lovely card or written tribute or give your presence one on one later, for the people you are close to. That is just as important as showing up. Yes, our cultural experiences and expectations and history hinge on these big gatherings. Some of them ARE important to do. However, they are based on the majority for healing. Community mindedness DOES create a good world, but there ARE exceptions. You are an exception. I know whom you are from the years we have been together and I know you love deeply and often make the world a better place. What you find healing will be different. That is ok. The minorities wishes are not often granted. It is ok for you to do things differently. As long as you still choose to love and respect when you can. Find alternative ways. Just know your small family may not be respected or may even be fought against for honouring who you are. Try to find support for them too and make it easier when you can while still being you." I found that validating and meaningful.

I feel joy in different ways than the majority. I am glad that people have lovely moments at weddings or larger gatherings. I have had a few meaningful, joyful or connective times myself in these circumstances. Especially in my younger years when I could tolerate overload better. My way of joy may be different, but it's not less. My way of being in community with people and having a handful of deep connections that would do anything for me, is how I need to move in the world. Again, it's different, not less. Just like I would view large funerals and weddings as different, but not less than my personal preferences.Quite honestly, many of my friends are not in my vicinity or even my own country. But they are deeply and avidly loved by me and I am by them. We share life together. I carry on unconventional relationships within my friendships that have a lot of space and distance, but they are also deep and full of love.

As my husband and I talked about each of our final wishes, we both realized neither of us will have funerals. My mother was appalled. She said, "But what of the people who wish to grieve you or come together. The funeral is for those that remain." To which I replied, "While I wish to be sensitive to that...People can plan what they wish themselves, in their spaces. What I wish for, is simply for my children and husband to do something in our home. They can also plan a separate small gathering with extended family or friends...perhaps a cozy sharing of our home in a hygge way. I DEFINITELY would love for them to do a showing of some of the slideshows I have made for our children over the years...I love those videos and would love it if they had time watching and remembering our good life together. Music and film are important to me.  But I don't want a large gathering and I don't want to be hosted in a church or sanctuary. As an Introvert, that is not me in this life nor should it be in death. I would also love if my close friends wrote letters to my children or husband or whomever survives me with tributes. I am ok if they want to write something on their spaces to honour the life I had with my family. I would rather people showed up for those left behind with daily deeds like a small meal given, a note or two, some music or gifts, and memories, but otherwise, I do not wish for anything but small, cozy, celebrations in the home that I loved with my husband and kids, and my parent's yard, with the videos I made and cherished, and supports of the people I left behind..."

This decision took a load off of my shoulders. I can now live freely, knowing my funeral will not be a moment of existence. Instead my family can pay for the cremation but use the rest of the death funds for themselves. I would like for them to simply live their best life...keep the writings and videos they liked of mine, and own every second they have left of their worlds. It's unconventional. Another family member called it "selfish." But I don't think planning our own ways to honour our lives is selfish. It's important for us to embrace our lives, know ourselves, and ask for our final wishes to be carried out according to who we are. Aren't all funerals a form of self? Even the ones that carry a final religious message are self serving the faith of those whom lived. It's not wrong, but it could be thought of another way too. So I do not believe that asking to not have a funeral or memorial in an official, unknown building is selfish. I have talked to the people who it would affect the children and husband, and made sure that they know I have thought of them. I still want them to have closure, professional counselling support, and some moments of community with those who actually know whom I was. I would be honoured if they commemorated me by keeping my blog for themselves or my videos I made, but most of all by just carrying how I loved them in their hearts, and embracing their lives to the fullest.

My husband has similar wishes. If he goes first, it is the same story. He does not wish to be in a church or building either. It's not either of us. If other people decide to go against his wishes and do their own thing anyway, that is out of our hands. It would show, though, that we were not actually known nor respected. We will honour each other the way we have discussed. And our children will carry out these wishes, with or without outsider support, if we both pass on. But we hope that they will get support from the people who actually knew them and us well. I trust my small group of friends to remember my sentiments on life and support accordingly. I may not be a present person in larger communities, but I KNOW without a doubt that I am avidly loved by a few key people. Who also avidly love my children and husband. We are known deeply by a few. And those few are enough.

I do believe vows are sacred. The choice to honour someone for life can be a beautiful event. Death and birth are also crucial moments of life change. But we all have choices, to a degree, within these moments. For instance, with my second baby I wrote out a birth plan, knowing that things could change. Some points in the birth plan were not honoured, others could not be due to an emergency, but the essence of what I wanted and needed happened. I had a doula to make sure that most of my wishes were granted to the best of her ability. This mattered to me. It did not mean that I judged anyone who had a birth different from mine. Choosing to not have pain meds did not mean I looked down upon women who needed them. Each birth is contextual and individual, even though each birth affects community and the world at large. So should it be in vows and death.

I want my children and husband to know every day I am alive that they are my golden hours. I hope to convey this as often as possible. I also wish for my extended friends and family to know this, in the ways I communicate...that they are important and worthy because they exist. That I love them differently, in the ways that I can, and value them when I think of whom they are. In death, I hope that I will have given enough of that love to those in my circles, that they can continue to life fully and own every second that this world can give to them... And live.

Song Choice; I Lived- Glee version of One Republic.

Saturday, March 31, 2018

Life as Music and Comfort During Grief, The Death of My Aunt, Pancreatic Cancer, Wishes for My Cousin, and Kacey Musgraves' "The Golden Hour."

I wasn't there, but with her last breath, my aunt was surrounded by family and the sound of the music she loved, as she died. Her daughter, my cousin, was unusually close to her mom. Similar to my daughter and I. They were Lorelie and Rory. Best friends and Mother/ Daughter. After fourteen long months of a roller coaster of emotion that the brutal beast of Pancreatic Cancer brought swiftly (after additional years of suffering,) my cousin watched her mother listen to her last song.
 (My aunt is the on the far left)
My aunt and my mother.
"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 the colours... I'm just sitting here and thinking that time is slipping and missing my mother...mother..."- Kacey Musgraves (*1) A daughter is missing her mother dearly and I can not begin to imagine the distress in my cousin's soul.
(My aunt is in front of the red candle watching my grandparents kiss. Each person in the photo besides my grandparents themselves have passed on. I can't even imagine the weight they have had to bear during this battle of their youngest daughter's after losing siblings, friends and other dear loved ones. Losing a child at any age is the deepest of sorrows.)

My aunt introduced me to some of the loves of my life; Eighties Rock, Country Music, Rom Coms, Elvis Presley, Audrey Hepburn, Barbies, and Keren Carpenter. We shared our tastes, magazines, and loved to explain to each other the back stories of songs written, bands who were famous, and their life stories. Pre Internet, this was a challenge and full of fun to find resources to back up our claims and prove our points about musicians, bands and life. The day after her death (today) I discovered Kacey Musgraves new album, "The Golden Hour." I realized that I could not share it with my aunt, who liked Kacey and Country tunes, but I somehow found comfort in the music despite this fact. Kacey wrote on the back of her Digital Booklet; "There are certain conjunctures that you can't think your way through. You just have to feel. I found myself at one making this album. It was like the universe was majestically saying "this is a time to be present, to witness the beauty of this incredible world you are lucky enough to be alive in" despite it being more complicated than ever and filled with so much darkness. We all need a little light right now. We all need compassion and art to flourish. We need to remember that when moving forward feels impossible, somehow new love still finds its way up through the cracks in the sidewalk. The sun still rises and the birds still sing. Inspiration finds it's way to you again..." I found this sentiment to be exactly what I needed.

Auntie Donna taught me how to put on my first bits of make up. I was about six, sitting on her bathroom counter watching her apply her foundation. I watched fascinated and wistfully proclaimed, "I wish I could be as pretty as you. I wish I could wear that too." She smiled and said, "Oh honey, with your olive skin tone, you are lucky to have that fresh childhood glow. You will have your turn for cosmetics, believe me." I think I looked a little crestfallen because she laughed and added, "But you know what? Make up can be a lot of fun. It's part of the beauty of being a girl. Some things are not so fun, so why not put on your morning face. Let's put on a little bit of eye shadow and lipstick." I looked in her oval mirror after her gentle application, and I felt gorgeous. My side ponytail and overalls didn't diminish my perceived glamorous affect. Anytime my aunt slept over, in the morning she would exclaim, "Let me put on my face before I come out." I loved that phrase.

Auntie Donna helped me find my voice in music as my main language. Music is medicine, empathy...and friendship. Before Christmas my Aunt came out to visit and brought two huge bins of her old records for me. She proudly told my husband, "Kiss always appreciated this type of thing. Missy has loved the music like I do. She knows that it can change life. I wanted her to have these pieces of me that we shared." We put on a few records while we talked. I found it hard in some ways because the Aunt that I related to in my youth was different from the Aunt who had gentled and was a smaller version of her old self. Watching her waste away in body and slowly in spirit was terrible. But I didn't wish for her to know I was thinking upon that. Because she was giving the fight of her life and still living every second she could. I wanted to respect that and give it dignity and not allow my own feelings to disrupt that journey. We sang 'Dancing Queen' together with my daughter. Which reminded me of the first time she introduced me to another diva, Stevie Nicks. "Some people thought she was witchy, and she was in the way she could bewitch music. I love Stevie. She was the queen of music but she also had sass. She chose her own way." Kind of like my Aunt.

She was so so beautiful. I can remember staring at her photos on my grandma's wall, hoping that I would be as beautiful as her some day. I memorized some of her photos. She was so pretty to me, in both spirit and body. I emulated her when younger. I watched carefully, and many of my formative ways were because of her when I was under fourteen. She is part of the reason why I find 70's style so attractive and appealing. I loved her seventies looks.

"Is there a word that I'm feeling tonight? Happy and sad at the same time? You got me smiling with tears in my eyes....they say everything that goes up...must come down..."- Kacey Musgraves (*2)

"When it rains, it pours, but you didn't even notice, it ain't rainin' anymore. It's hard to breathe when all you know is, the struggle of, staying above, the rising water line. Well, the sky is finally opened, the rain and wind stopped blowin,' but you're stuck out in the same old storm again. You hold tight to your umbrella, well 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 and orange and green, and at least a million others. So tie off your bow, take off your coat, and take a look around. Cuz' the sky is finally open..."- Kacey Musgraves. (*3)

I have to be careful not to dwell too much on the last months of my Aunt's life to the point of being "stuck out in the same ol' storm again." She was a very different person to me, although with the same core essence, in her last year of life. It is important to honour and recognize the fight she had at the end of her life. It was a legitimate part of her journey. I can't write it off. But I also have to remind myself to not stay in the rain either. My aunt also savoured the colours in life. She was always a feisty woman with a lusty side, who laughed hard, loved fully, angered easily, and worked for every moment of her life.

Kacey also wrote on the back of her album; "There are different masks we all wear the represent different sides of ourselves. None of them are solely us and yet they all are. There's the lonely girl, the blissful girl, the new wife, the daughter missing her mother, the hopeful girl, the selfish girl, the sarcastic rhinestoned Texan, the shy girl and the life of the party, the winner and the loser. They are all characters on this record. None of them alone are me and yet they all are..." I hope, that even with the grief, my cousin can feel free to be each of those versions of her self. Just like her mother did. I hope that she will not be constrained by each role, but fully own the beauty and realness inside. I want her to eventually find her days in the sun amongst the shadows, while still allowing herself the darker days. She's still young and in her twenties, and deserves to live life with bliss, even though she will carry this sadness and the waves of grief with her through out life.

(Me and my cousin)
"Northern lights, in our skies, plants that grow and open your mind. Things that swim with a neon glow, how we all got here, nobody knows. These are real things. These are real things. Oh what a world, don't want to leave. All kinds of magic it's hard to believe. Thank god it's not too good to be true. Oh what a world, and then there is you..."- Kacey Musgraves (*4)
(My cousin with my youngest. She is called their auntie because she had no other siblings and I felt she deserved that role...just like her mom she has been incredible to my children. Especially when they were younger and we could spend more time together.)

Langeston Hughes wrote that "Life is for the living. Death is for the dead. Let life be like music. And death a note unsaid." Death is detailed, complex and non linear in feeling. Each person's grief story is legitimate and different. Those whom are left, are the living, and while they live, have to find a way to carry on too. Northern lights, plants and the beauty in everyday magic is a gift...but the beauty we see in the souls of each other is the highest of all. When that breath is taken, the fall out is tough to justify. I am not the one to do that for anyone. I just know that music brings me back to life.

"You can't find it sittin' on a shelf on the store. If you try to hide it, it's gonna shine even more. Even if you lose it, it will find you. There's no way to stop it, but they'll 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..."- Kacey Musgraves (*5)

When I was five or six, my mom brought the silky white dress into the room. She put my hair in curlers so I could rock the Shirley Temple look in the morning. Because my pretty Auntie was getting married and I was the flower girl. I remember, on her day, she bent down to eye level and whispered, "I am so glad to be sharing this day with you sweetheart. I just love you so much honey. You are SO beautiful in that dress. Look at you. All the young boys are gonna turn their heads when you walk in." She was affirming of my beauty and told me often that I was one of her most precious people. I remember looking at her beautiful face, framed with eighties bangs (that she actually pulled off) and her gorgeous tiara veil, and hoping that I would be as happy as her on my wedding day. At the reception the family sang, "Oh Donna" from her husband and she cracked up. I could never hear that song without thinking of her and how she looked that night. When I was asked to put something on a card for her filmstrip at her funeral, those lyrics were the first that came to my mind, "I know a girl, Donna is her name, and since I met her, I have never been the same. Oh, I love that girl. Oh Donna." (*6)

And I never have been the same. The people in our lives help shape wisps of ourselves. The month before she died I wrote to her, "Listening to your records. 'How Wonderful Life is now that you are in the world." (*7) She wrote back, "Elton. Oh that man can sure write songs." I texted next, "Yes, I tried calling. I was also sitting here thinking and talking to Hubby. He and I were discussing how you are one of the main supports we had for our marriage. We have always been forever grateful to you for liking us together. It is always been very valuable to us and will continue to be valuable as the years pass. Also, you have been one of the few people who have seen our children's disabilities and try to understand them but also have seen their spirits and been a lookout for them. Our kids will be forever grateful and have been partially shaped because of you. So I wanted to thank you for that. We love you very much." She wrote back, "So as I sob reading this, I just wish you were here so I could give you giant luvs, hugs, kisses and squishes! I just love you so much honey, your mom texted me and I saw your text then so I read it and you got mommy to put put on Facebook, wow! Had no idea you felt like that. And you know what? It came at the right time, I was sick today and couldn't get my pain under control, that sure helped!! Feeling much better now, thank you, I would phone you but it's late there and you probs won't read this till morning anyway, much love honey."

(I love how I am looking at her in the photo below)

"... 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 truth 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 is a place to land, I don't need a superman... 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 is a reason why you always see it in the movies...Because baby, I ain't Wonder Woman..."(*8)

My aunt was strong but she also had her struggles and flaws. Sometimes life broke her too. She was particularly upset about a procedure she had to do and texted me about it. I wrote, "You are more than any procedure done to you. You are more than your illness. You are more than a series of symptoms. Sometimes they will take over cuz they are part of your but your essence remains in dignity even when you feel some of these things are undignified. Dying is horrible but there are moments of beauty like witnessing the strength of those who love you around and also in you. Seeing that generations will go on and pass part of your spirit onward with them. That they too will pass onward and their energy will change into new (or however one believes.) I read a quote that said that 'Watching the people we love die bit by bit is the hardest thing life demands until we recall that watching the people we love die bit by bit in a certain sense is what life simply is. It just usually takes more time for the bits to go by in some cases.'- quote from (?) I'm sorry this is happening to you- that your process is a painful one often. That you have to tread through unpleasant moments with not much to look towards for time here except time elsewhere. I wish you more moments that are pain free  and moments of dignity. I hope you can retain your spirit while you endure the final moments of what bodies tend to do- be it slow or fast (and she did). In a way yours is both- it expired too fast but is also taking you slowly in pain:( That's unfair and tragic in so many ways. I'm sorry and wish that burden could be lifted from you. On the flip side I see how much you still give to life just by breathing. Right now until your time comes. None of us know when we could go. You have had goodbyes which in a way is bittersweet. You make a difference to life by being you. You are loved. It's ok to be both strong and weak at once. To need help and to be...that some procedures are necessary - it's ok to have all those emotions. It is human and normal. Just know that you are not any less loved or respected for what you must endure. We will carry you onward in our hearts and our children's hearts because you helped shape us and in that you will live."

I was nervous after I hit send because I never know how people will respond to my weird, honest philosophies and sentiments on life. I sprinkled the text with heart emojis but I was worried I made it worse for her. But then I looked at her text back, "Awe my heart overflows with love for you my sweet niece! thank you for that! I just love you to pieces." I was relieved I eased her burden instead of stressing her out more. She always loved the blog posts I sent her and was one of my biggest fans. I always appreciated the time she took and will miss seeing her email address in my contacts and the thoughts of her that went with it...

I was on the treadmill today listening to "I Dreamed a Dream"(*9) and I became slightly choked up. The song expressed the sorrow of the moment. "I dreamed a dream of time gone by. When hope was high and life worth living. I dreamed that love would never die. I dreamed that god would be forgiving. Then I was young and unafraid. And dreams were made and used and wasted. There was no ransom to be paid. No song unsung, no wine untasted. But the tigers come at night. With their voices strong as thunder. As they tear your hope apart. As they turn your dreams to shame. And still I dream she'll come to me, and we will live the years together. But there are dreams that cannot be. And there are storms we can not weather. I had a dream my life would be, so different from this hell I'm living, so different now from what it seems. Now life has killed the dream, I dream."- Les Miserables. I would not wish the last few weeks of my aunt's life, of hell on earth, on anyone. There are dreams that can not be and storms that are almost impossible to weather. She had so many dreams left to share. But I am trying to focus on the ones she DID get to live.

My Aunt gushed over me and told me often what a character I was. She avidly protected and laughed at my fierce individuality and innocence. When I was seven, Auntie Donna came to me elated, "Sweetheart, guess what? I am going to have a baby!" Later she laughed and said, "Now don't you get jealous on me. You are still gonna be my sweet girl too, no matter what baby I have, but it will be like you get another special younger sibling to look after." My dark haired, elven cousin entered the world months later and I was enamoured. And also slightly jealous but my seven year old self got over it. My aunt predicted that one. She knew me well in that regard as her intense, scorpio niece. But she still made room for me though all of her being went into her little girl. The dream she dreamed became reality when she held her little bundle and her life was never the same. Her beauty can be seen through my cousin in so many ways. Her light is carried on within the life of her daughter.

Another phrase of my Aunt's was, "And don't ever forget to wipe off your face at night. Or else you will look like me! Always take off your make up honey. Wash and freshen up for a new day." (My dad snapped the blurry picture above when we were camping. I was a teen and even in the outback I was fastidious about my facial routine thanks to my aunt.) She passed the same practical wisdom on to my daughter. And really, when I think about it, it's also a bit of a philosophy. To wash off the grit and old bits and take a moment to savour the golden hours of life as one hopefully anticipates the next day.

Auntie Donna, how wonderful life was when you were in it. You contributed to so many people and their lives. You lived and owned every second that this world could give. I admire your strength and am in awe of the dignity you could muster through your varied trials. We mourn you. But we also celebrate you. Goodbye my rockstar aunt with the dyed red hair, beautiful make up, super sass, and large heart. Thank you for all you did to support, teach and love me and my family. We will remember. xoxo

2* Happy Sad- Kacey Musgraves

3* Rainbow- Kacey Musgraves

4* Oh What A World- Kacey Musgraves

5* Love is a Wild Thing- Kacey Musgraves

6* Oh Donna-- Ritchie Valens

7* Your Song/ How Wonderful Life Is- Elton John

8*Wonder Woman- Kacey Musgraves

9* I Dreamed a Dream- Idina Menzel and Lea Michele