Tuesday, October 3, 2017

Explaining Extroversion Versus Introversion in Personality Types. Mistyping Personality. How Male ENTP's and Female ENTJ's often think they are Introverts, ESFJ's as ISFJ's and how INFP's often think they are Extroverts and INFJ's are Mistaken for Extroverts ect. Accuracy is Crucial to Understanding.

I wrote HERE  "*NOTE: As I have mentioned before in posts, personality is ONE aspect of being human and your individual make up. Environment, upbringing, birth, health, trauma, life experience, mental or cognitive differences, genetics, beliefs, gender preferences, country of origin....there are so many aspects that make up YOU. However, I firmly believe finding your accurate personality helps you understand more of yourself and how you work or function out of the world. Take a free test HERE: http://www.16personalities.com - or sign up with an email and take test here http://www.personalityhacker.com/genius-personality-test/ (this site has amazing insight, podcasts and videos.) The key is to answer as you ARE and not as you would want to be like. Meyers Briggs/ Keirsey is what the 16 personalities is based on and has research behind it for a reason. It is more of a descriptor of what you value and how you work out of the world in regards to communication and relationships.* 


In this article I am focusing on Introversion and Extroversion in the types and how they can often get mixed up or that the E versus I is a misunderstood concept. Using different outside links and sources to help you figure your accurate result out, this post is meant to diffuse some misunderstandings on Extroversion and Introversion in personality types. I am citing the most common mix ups I have found in real life but there are obviously going to be mix ups in each personality type and letter. There are three other letters that can cause issues in being tested and getting a non accurate result (see last paragraphs of post.) Obviously, because I am an INFJ, the section on INFJ's will be longer  due to my personal experience.*

Both Extroverts and Introverts get overstimulated by people, but the rewards system in the brain acts differently. According to the study cited HERE, Extroverts receive a higher reward of dopamine when interacting with people. An Introvert is more likely to get this same hit from an inanimate object.

I am married to an Extrovert, albeit one who needs more downtime than most Extraverted types. But this difference makes for some interesting conflicts to navigate. The world is set up for Extroverts thus I understand him, but he needs to actively read articles to understand my Introversion. He has used the argument that the Internet is ruled by Introverts, and while I don't think that is entirely true, I do believe that he is more likely to find helpful articles on Introverts simply because they are often the ones writing the material most of the time from that perspective. Personality Hacker has a few podcasts HERE and HERE that can aid in extrovert/introvert interactions (and any other difference in lettering.)

A key to understanding being an Extrovert or Introvert is the energy hit concept, which the Personality Hacker links reference. Do you get an energy hit after dealing with people even if you have had a marvellous time? Do you need to have quiet recovery time after even if it was good? Do you feel like you can wait a long time before ever doing that again, even if it was completely positive ( there is a range obviously in any category)? Or do you get an energy high after dealing with people in general when it's positive? For instance, you may be tired or ready to go home but your energy does not need copious times to recover and you can not wait to do it again. You may feel satisfied, fuelled and almost like you do after consuming a Thanksgiving feast, and this feeling doesn't dissipate right away...if this is the case you are most likely an Extrovert.

Some mistakenly believe they are Introverts because they need some downtime after large events or they are not necessarily chatty people. But Extroversion in certain personality types can come out more as networking, business relationships or connecting based on functions and hosting. As an example, often male ENTP's and female ENTJ's can feel they are not Extroverts, even though this is often how they do Extroversion. They are types who get an energy high off of networking with people for a common goal. ENTP's and ENTJ's will often be seen hosting dinners but hiding out in the kitchen preparing, making coffees or cleaning up. They will be the ones who need ample alone time but also thrive and enjoy a good party or numerous networking discussions on whatever their job or passion is. Often it is the male ENTP whom will be questioning their Extroversion ( for some reason female ENTP's do not do this as much) and the female ENTJ's who more often than the male's get mixed up as INTJ's. My theory is that women are naturally relational and as Rationalists ENTJ women WILL feel more drained when it comes to dealing with the feeling aspect of relationships so thus feel they are introverted due to their third function. Rationalism can also be confused with Introversion just like Intuitive qualities can get mixed up with Introverted qualities, if you do not have a firm grasp on definitions. ENTJ's are usually strong leaders in some new found path, while INTJ's will be more quiet about exerting their influence over time. HERE and HERE are two articles on that I highly recommend if you are an INTJ or ENTJ - to make sure that is in fact what you are.

MBTI Online HERE states:
"YOU EXTRAVERT CERTAIN PARTS OF YOUR PERSONALITY AND INTROVERT OTHER PARTS OF YOUR PERSONALITY
Here’s where the fun begins. Extraversion and Introversion are more than just a preference. When you start to understand more about personality type, you learn these preferences actually act like verbs instead of nouns. Depending on your personality, you extravert certain parts of your personality and introvert other parts of your personality. (We go into this more in depth in our eBook – The Ultimate (and official) Guide to Extraversion and Introversion). Your favourite function, for example, will either be extraverted (expressed outwardly for other people to see) or introverted (expressed inward, basically it happens in your mind, and others can’t see it happening).
For people who have a preference for ENTJ, their favorite function is extraverted Thinking. This means that when they’re making decisions, they’re discussing it with others and often directing the group decision making. Because extraverted Thinking is the strongest part of their personality and it’s extraverted, it’s the part people are most likely to notice and is probably considered a strength for that person with ENTJ preferences. For people who have a preference for INTJ, their favorite function is introverted Intuition. This means that when they’re taking in information and learning new things by connecting the dots and seeing patterns, it’s all happening internally and they’re probably not sharing all these thoughts with the people around them. They rely on focused, complex inner maps of ideas of the present and future. Ready for the kicker? The INTJ’s second favourite function is extraverted Thinking and the person with ENTJ preferences’ second favourite function (sometimes called the auxiliary function) is introverted Intuition."

Personality Hacker has a great article on the difference between ENTp and INTP here;https://personalityhacker.com/phq-questions-intp-vs-entp/
It is also quite common for INFP's to think of themselves as an Extroverted type because they are the most Extroverted of the Introverts. They generally care and live off of their interactions with people, however, their energy DOES take a hit and they need loads of alone time. HERE is an article that explains how an INFP result could actually be an accurate ENFP (and it can go the other way too.) INFP's will often score as ENFP's or even INFJ's because of the overlap of traits that are actually crucially different in functioning but seem similar in first glance appearance. This is why it is so important to take a few tests and also bounce off answers with someone who knows you, as you are, instead of how you think you are. HERE is an article on the surprising differences of INFP and INFJ from Personality Hacker.

Dear INFP's; (Who do not know they are INFP's yet but think of themselves as something else...possibly an ENFP or INFJ or INTP or any Rationalist category for that matter...) "*It’s important to note here that INFPs are the most prone of any personality type to mistyping as something else. Because INFPs live in a world of identity possibilities, they enjoy thinking of themselves in various different lights and are able to thoroughly convince themselves – more so than any other type – that they truly are thinkers, judgers, etc. Their extroverted intuition allows them to see a situation from various different angles and their introverted feeling creates an emotional attachment to the type they decide on. For this reason, INFPs are more prone to mistyping than any other type." Taken from HERE.



INFJ's can often be mistaken as Extroverts by others, although they often score accurately as Introverts because they are usually quite aware that they like the concept of people, but struggle to deal with people on a smaller scale. However, since they are a chameleon type, it is easy to see how people could think of them as Extroverts.

An example of an INFJ being mistaken as an Extrovert in television, would be Cassie from The Good Witch series. This link HERE clearly points to Cassie's INFJ qualities, on the show, yet it would be easy to mistake her as an Extrovert as she is the pillar of the community and constantly in people's lives for their big epiphanies. Her love interest, Sam in the show, is an INTJ which is a top fit for an INFJ, along with an ENFP, for compatibility of the functions. As an INFJ myself, I can relate a lot to Cassie. When I was more involved in my community I was constantly active, leading small groups, networking people and giving advice. Even to my smaller groups now, I am often the one gently leading someone to their own self growth or epiphanies simply from my intuitive observation function. I have helped people get accurate mental health and physical health diagnosis's that their doctor could not figure out simply from this trait. Yet, I do not believe my way is the only answer and my rule is to ignore anything that does not feel legitimate or apply. Because of my Autism though and Chronic Illness, I have more need for boundaries, do less and am involved in less community activity than Cassie does, but otherwise I relate to her in almost all regards. If I was healthier in body with more energy and not constantly sensory overloaded, I could see myself being an active member in my community...oh and if it wasn't so religious.

Before I dropped out of most cultural expectations like school, church, small groups ect, I was considered a very social person. I am still considered an Extroverted type if I get thrown into a small group and nobody is talking. I will put myself out there and mimic the personality types of those involved to get them talking or put them at ease. I can seem silly if the situation calls for myself to be silly, to allow others to be comfortable. If no one talks- I will- out of my need to harmonize and make people feel comfortable.

We were at my sister's birthday party and there were three new people added to the group. I automatically gave them a loose personality typing in my head of INTJ male, ISFJ female and INTP male. These were added to a group that consisted of an ENTP male, INTP male, ISFJ female, ENFP female, ENFP male, ENFJ child, INTJ child, ENFP child, and INFJ. The meal was silent other than a few awkward attempts at conversation, even though there were five Extroverts. ENFP's will often be mistaken for Introverts. If they are in a new situation, they will either be extremely show offy and loud or will take a back seat to feel out the situation. Normally it is the first option but it usually takes an area of interest and then they are the star of the show, but in a joking, fun sort of way. Even if they are advanced in areas of philosophy or deep thought they can come off as a clown. ENTP's are not the center of attention unless it is a networking interest or a sarcastic tease. Both are slightly intimidating in new group settings ( ENFP and ENTP.) ENFJ's are very social but enjoy harmony and will wait to draw out attention based on people's interest. ISFJ's value family gatherings and will try to put out a few awkward attempts at conversation that will work excellent if the gathering is made up of mostly S types. There were only two S types in our situation, thus these attempts were slightly appreciated but not really picked up on by the Intuitives as the comments were about solid sensory aspects of dinner.

Thus it was up to me because I was in an environment I was comfortable in, so of course I blabbed about Personality Typing, and made everyone laugh. I had each person conversing about their personality by the end of it, even at the personal cost to myself. I ended up being accurate on each of their personalities which always makes me happy. I can be wrong but it's rare and often due to another person not being healthy in their version of self. My 12 year old INTJ said after the event, "I LOVE you mom. You are so funny. You make people comfortable by making the situation uncomfortable. So by you doing that you look silly but it's exactly what you wanted and they didn't know they needed. It's weird to me how you can draw people out by being odd and mysteriously accurate about themselves and yet somehow it's comfortable while being uncomfortable at first. I just think you are amazing." Which, coming from this child made my heart melt because he is not exactly forthcoming with expressions of mushy love or verbal affirmations, thus it meant a lot. But you can see how in that situation I probably came off as an Extrovert. Also, in these situation no one ever asks what my type is. This happens pretty much every time I bring the conversation around to personality, which is a lot, probably because it's a personal growth interest and aids me in understanding, tolerating and accepting people with compassion instead of a negative emotion.

At functions where personality is talked about, my type and my daughter's ENFJ type is never discussed. Yet, on the internet INFJ material is ample! Why is this? My conclusion is, that outside the computer, the mystery factor, combined with our secondary core Harmonizing function, shows up and takes us out of the spotlight even while we are in it. Both ENFJ's and INFJ's like to harmonize and blend in to make peace. Thus, we put the focus on others consistently, even if we are the ones talking. It's odd but our types are not often discussed  in groups discussing personality offline, because of this approach. Which is probably why writing about it and reading or pinning tons of pins on my type, helps me express out loud without having to actually do that with anyone specific other than my best friend and husband. I tend to take that type of attention off of myself unless it is with my very few core relationships.

Recently, my husband misinterpreted my need for downtime as cold hearted crankiness, when in reality I was just needing some downtime to process. The next day I read him an article called, "21 Things People Don't Realize You're Doing Because You're an Introvert". I actually can't chose a couple points to highlight because every single point was bang on. I highly recommend the easy read if you love an Introvert or are one yourself ( because solidarity sister/brother...)
https://introvertdear.com/news/infj-personality-type-signs/
https://introvertdear.com/news/infj-personality-type-curiously-contradicting/
http://introvertdear.com/news/infj-personality-type-unique-traits/

I may come across as Extrovert but an INFJ is one of the MOST Introverted types. We need ample alone time after conversing to process. We stay up late at night if we don't get this processing time going through events.

Another common mix up is people perceiving an ISFJ as an Extrovert. The ISFJ often knows they are not Extroverted but they are the types to be found in small groups on weekdays, teaching piano after schools or some similar activity, and hosting holiday dinners or at least attending every. SINGLE. one. This is because they deeply value the concepts of community, family and concrete ways of working in the world. ESFJ's can often think of themselves as Introverts because they absorb emotions and need down time because of this, however, they can not get enough of people and often struggle with boundaries. They both love and dislike their need for people ,so often wish they were Introverted or even type themselves as Introverted, if they are not in their healthy boundary filled place in society. The reality in this situation is that often they are simply exhausted Extroverts wanting to be an Introvert to heal, so sometimes get mistaken as this when they do their own testing.

There are many ways one can mistype in Personality, not just in the Extroverted/Introverted categories and I highly recommend this read for more:
https://thoughtcatalog.com/heidi-priebe/2015/07/heres-which-myers-briggs-type-youre-most-likely-to-mistype-as/3/

My rule of thumb in regards to personality is; If you read the articles or watch the video's on Personality Hacker or Michael Pierce or 16 Personalities and feel like they just crawled into your head and explained the weird things you thought no one knew about yourself, you have got an accurate type. If you only feel lukewarm about your entire description or don't feel at least at one point to jump up and say, "YES!" you are probably at least one letter off. My husband tested as a Guardian for years and he hated his result because his personality always felt like something he could not attain to, but finally I sat down with him and took the test with him and he got an ENFP. He actually cried a little reading his result because it FINALLY expressed his soul. Now he can not get enough understanding on ENFP functioning and how that works in the world at large. This understanding has aided him in his relationship with me and our children the most. We can laugh off what would otherwise be great misunderstandings, because we understand our core functions are clashing.

Personality studies opened up a world of acceptance for myself and my family. More than almost any other discovery in my life, it has been the most helpful. I deeply value the insights that come along with this way of relating. Instead of seeing it as a concrete way of WHO people are, I see it as a stepping stone of flexibility, enabling more compassion and understanding. However, I have witnessed the OPPOSITE of this happening when people are unhealthy versions of themselves or do not type themselves accurately or BOTH. Then personality only hinders the process because the information and understanding is mistaken. It is crucially important to Know Thyself. I hope these links help clear up some of the common misconceptions of Extroversion versus Introversion.

Go and Know thyself :)



Here are some of my pin boards:
 Pin board for INFJ quotes: https://www.pinterest.ca/KAlluraMarie/infj-personality-infps-intj-quotes/

Many article links on Personality ( with a focus for INFJ's): https://www.pinterest.ca/KAlluraMarie/infj-article-links-and-mbti-charts/

Pin board for silly and quirky Memes for INFJ's: https://www.pinterest.ca/KAlluraMarie/infj-memes-and-quirky-infj-posters/

and an Honorary ENFP board for my husband: https://www.pinterest.ca/KAlluraMarie/enfp-quotes-and-articles-to-my-hubby-from-his-infj/



Friday, September 15, 2017

How Hope was Created by A Record Player And Complex Disease Anxiety Decreased with Music.

In the midst of some complex medical challenges I have found a slight sense of solace. To be honest, for a long while, getting through the day has been considered a "success." It has been years of digging for the source of my odd blood work, symptoms ect. even though I 'present' as a fairly well adjusted and healthy adult. I finally see an Internal Health Practitioner 'Internist' and Hematologist in the next month...and possibly a Geneticist if my one test is proven a genetic mutation which looks to be the case. My blood work was considered serious enough to warrant these precautions and though my research the last few days has been worrisome and overwhelming, it is also a slight relief to know it wasn't all in my head. Slight, being the operative word. The genetic part of the puzzle makes sense for some of the issues I have had since childhood. Oh, and hey, I always could relate to the X men. I always thought I could be a mutant:) Who knows what that result will mean for the future or if it will be accurate for my circumstances, but there has to be a silver lining somewhere...

Which brings me to my little itty, bitty sense of solace beyond those few people in my life (my family, Instagram gals, and bestie amongst a few key supports), that is providing a sense of inspiration, however small it is. This is my new solace machine:


Currently, my player is churning out Norah Jones as I sit typing. Mellow grey clouds hover near. Both literally and figuratively.

I never have liked being a cliche or crowd follower. Records are in vogue which was a huge point against them in my books. It all started when my daughter used her hard earned savings for a 1950's suitcase record player. I was proud that her first choice of record was 'Fleetwood Mac's Rumours.' My dad lent us expensive speakers to use which accentuated the beauteous sound of the records. And suddenly, I was back to my childhood. I felt like a piece of my life, from a less conscious place, was handed back to me. I recalled the many afternoons I laid on our living room floor in the sunshine, next to the family record player, with my dad's huge headphones perched on my head, and the long twisting chord wrapped around me, reading the lyrics or pouring over the album's pictures. A piece of myself I didn't know was missing came home. Trendy or not, it wasn't something I could deny myself.

My husband bought me my own 1970's player. I think perhaps I was craving a more physical connection with my music, a raspier sound, and tangible printed lyrics. I was a teen in the nineties and finding a range of music was a hunt and perhaps more valuable because the music was not at your fingertips- though I admit I love available music at this time period in history too.

It was rare for someone like me, to know every musical genre. I worked for that knowledge and collected bands and oldies friends had never heard of. I made it my mission to make as many mix tapes as possible and spread the musical education of the classics and the silly and obscure, angry or eclectic. It was pre iTunes and Pre Glee, before the classics came the rage. I was a walking Gilmore Girl with my interests (a show that excited me when it came out because I knew every single film and musical reference it made.) Now, I confess that while I love all music and the genres, my go to of choice are often 70's and 80's songs, mellow Autumn music (Jazz and Easy listening) or Christmas music...because I find that I need 'feel good' inspiration. I'm not as cool as I once was for range, but I can still appreciate the beauty of any score of music.

I still love my iTunes songs and the accessibility of songs on Youtube. But the record player is a nice supplement to when I need a little bit more. I like that it is not easy to find the few records I actually want. I love that I made a connection with my aunt, whom is dying of terminal cancer. She was able to make a last trip and brought me a huge case of all her old records. We sat and listened to a few, talked about some of the tunes she introduced me to, and jived to Dancing Queen. The record player brought us another memory together. I also love the joy of the hunt again...looking for some of my favourite albums in vinyl form.

I loved 1930/40's record players but because of the expense I skipped to my next favourite time period- the Seventies. The decade before I was born but the decade my parents were stuck in, even though it was the 80's, with their style and choices. I feel so many comforting feelings just by watching the tilted whir of the golden boxed record player. The warm crackle accompanying the music, enhanced by the amplifier, causes my soul to exhale stress and inhale home.

It was an aspect of self, outside of my self, that I needed. Crooners especially sound more poignant on record...and Christmas music. I admit to being a Christmas music junkie even though it can be lame or sound uber religious...I still love the tunes and play them even when they do not line up with what I believe, Amy Grant's Christmas songs are still amongst my top played. Nat King Cole crooning the 'Christmas Song' or Bing singing 'White Christmas' make me feel immediately encompassed with magic. I have already played Christmas in our home this September. I don't understand why that horrifies some people. It was simply what I needed to change my mood.

Last weekend, everybody in our family fought. It was gloomy. It didn't start raining nicely until most of the day was done. We had a huge meltdown that I ended up having to deal with and talk through for about an hour and a half. Then my husband and I fought like we have not fought in months which brought up a lot of PTSD from the last year. I was miserable all around. It probably doesn't help that one of my elevated blood markers causes lethargy and frustration...no matter how many gratitude and meditation practices I do, it is a feat to keep the crankiness at bay. But then I was sitting in my room and I thought "Wait missy, I believe you have to (in part) make the world that you create. So why am I not acting upon that? Where is the world I am creating and how can I actively change it RIGHT now? " So instead of wallowing in my bed like I wanted to do, or crawl in my closet and cry and cry and cry, I decided that I could it least make the house cozier. So I cleaned and I put on Christmas lights and I got my daughter to bake something that we could all eat - Cornmeal Yugort Muffins -and then I realized that Christmas music was just the ticket. So I put on Christmas music in September because sometimes we need to do that. And it worked beautifully. And then the rain started coming ... my daughters plans got cancelled but she was kind of relieved, because our house was starting to become in harmony again and she wanted to witness the peace. She also wanted to listen to records in the rain… Most of the day was a write off and I'm still healing from some of it, but at the same time, changing the music enabled me to know how much I have.

Mood changers like music and seasonal changes before they are actually happening are sometimes needed. Being able to clean, creating good food and enjoying wonderful company in my harmonizing daughter was healing. Emotions can be nitty gritty and sometimes even an active choice. That day I spent at least an intense hour with each child listening to their woes and because of that effort, each child ended up feeling safe. And that feeling of safety was enhanced with Christmas music on a record player.

If I hadn't followed my heart and convinced my husband to purchase an early birthday present, I would not have experienced the peace that has accompanied the time each day that I take to put a record on. My body and spirit drag through most moments. I valiantly try to fight through what I can, salvage positive memories, and also teach my children to LIVE, but living in my current conundrum of a body without much direction, has been devastating. As the minutes tick by I know the symptoms I feel should be managed in an ideal situation and I know I could be more than I am. I know that I have some dangerous complications including sudden possible death by stroke, early Dementia and Alzheimer's, heart attack and blood clots due to one of my elevated blood markers which stem from a deeper issue...and reading about it prepares me in many ways but also overwhelms me and makes me wonder if I will find a medical professional who can help me through it the way my body needs to be treated. The pieces of why I can not even tolerate most vitamins or many foods are finally beginning to fit together. Yet, at the same time I know we are on a good path, even if it ends up being a detour, and that I have a few sturdy people in my life whom I can depend on to pick up whatever pieces fragment along the way. I am so thankful for these people who have their own life tragedies, illness and death to deal with. The record player is a tangible reminder of this proverbial horn of plenty. I can feel the soul in the music which reminds me of the souls in my life, in the earth, and in my home. The infusions of inspiration that may be small but matter. They matter as much as life itself matters.

Now I must turn the record player off and force myself to walk my daily walk, even though each step feels like a feat. Because life is a balance of both. The music prepares or heals after the journey or even fortifies during, but there are still active choices to be made. The dance is waiting.


Oh and I did end up painting our door purple...


Song Choice: Put your Records On- Corinne Bailey Rae

Tuesday, September 12, 2017

Alan Watts- Life is NOT a Journey...It's a Musical. The Damaging Politics of Liberalism and Conservatism. The Dark World of Compulsory Schooling ( Yup it all ties in)



Podcast/video Quote; "But that it is best understood by the analogy with music. Because music, as an art form is essentially playful. We say, “You play the piano” You don’t work the piano.
Why?
Music differs from say, travel. When you travel you are trying to get somewhere. In music, though, one doesn’t make the end of the composition. The point of the composition. If that were so, the best conductors would be those who played fastest. And there would be composers who only wrote finales. People would go to a concert just to hear one crackling chord… Because that’s the end!

Same way with dancing. You don’t aim at a particular spot in the room because that’s where you will arrive. The whole point of the dancing is the dance. But we don’t see that as something brought by our education into our conduct. We have a system of schooling which gives a completely different impression. It’s all graded and what we do is put the child into the corridor of this grade system with a kind of, “Come on kitty, kitty.” And you go onto kindergarten and that’s a great thing because when you finish that you get into first grade.

 Then, “Come on” first grade leads to second grade and so on. And then you get out of grade school and you got high school. It’s revving up, the thing is coming, then you’re going to go to college… Then you’ve got graduate school, and when you’re through with graduate school you go out to join the world. Then you get into some racket where you’re selling insurance. And they’ve got that quota to make, and you’re gonna make that.

And all the time that thing is coming – It’s coming, it’s coming, that great thing. The success you’re working for. Then you wake up one day about 40 years old and you say, “My God, I’ve arrived. I’m there.” And you don’t feel very different from what you’ve always felt. "

Look at the people who live to retire; to put those savings away. And then when they’re 65 they don’t have any energy left. They’re more or less impotent. And they go and rot in some, old peoples, senior citizens community. Because we simply cheated ourselves the whole way down the line. If we thought of life by analogy with a journey, with a pilgrimage, which had a serious purpose at that end, and the thing was to get to that thing at that end. Success, or whatever it is, or maybe heaven after you’re dead. But we missed the point the whole way along.

It was a musical thing, and you were supposed to sing or to dance while the music was being played."- Alan Watts
***************************************

Musicals are my life blood. Since finding out I have even less literal healthy blood in me than originally thought, the musical has become even more central in my life. I can not pick one genre or revere the classics above all else. If music has passion, a message, an inspiration, a feeling captured, lyrics which move or rhythms that create movement...I am soul singing and mind dancing. Since as far back as my memory allows, I have viewed my life as a musical. I have mini soundtracks playing constantly in my head. When I can't express myself I send out a song. Some episodes of Glee can touch me more than any other media form. My photos make the most sense and trigger the most memories when they are set to music. I can not remember most facts but I can recall the lyrics from thousands of songs across multiple musical genres. Music IS me in so many ways.

The "life is a journey and not a destination" never fit my mentality. However, the phrase was useful to remind me, at one point of my life when I was all about "getting things DONE," to just be the process. But it wasn't a phrase that really encompassed the beauty, the playfulness that CAN be part of life. Life is a musical encompasses all of the dramatic, mundane and beautiful life moments. Part of my context is that I have within me, a formally christian perspective. Christianity is generally, disguised or not, all about the destination. Heaven. In the doctrine that I was immersed in early life, life is ultimately about dying..."dying to self", "dying to the flesh" and finally dying to reach heaven. Heaven was a more perfected version of life and the belief that you can have it all; ' the mansion', the relationships failed at magically perfected, the closure, the justice of other’s not seeing your way going to hell, the meetings of people that were otherwise not available in real life...and chance after chance in eternity. It makes sense that this is an appealing doctrine to so many. If you don't enjoy life or try to make the world a better place now, you have eternity if you say the prayer and follow Jesus. Obviously, this is a one size statement and does not apply to more enlightened individuals of that chosen faith.


I don't need the counter arguments or merits of it, because I KNOW them. If I had to choose a religion to take over the world Christianity would probably make the top five simply because of the striving for peace and morality it promotes. I am not anti christian but I do take multiple issues with the ridiculousness of some of the mentalities that have been handed down throughout generations considered 'biblical' when really it boils down to power. If you have the ultimate power over death and the mentality of the "right way" then really no human can ever shake or move you to any extent other than your own fellow believers... and that power has created so many disillusioned and sad relationships and poisoned earth or neglected it in the name of heaven and new earth or worse, in hopes of an upcoming or "happening great tribulation." Celebrating natural disasters in the name of "Christ's coming" instead of actually thinking upon climate change and our part in the conundrum. On the political spectrum, Conservatives restrain growth and hamper change, while liberalism is advocating yet ironically causing hypocrisy and damage to the deeper issues in the name of advocacy.

In both spheres there is beauty, but there is also a general lack of challenge when one is immersed in one mind set and surrounded by like minded literature, people and lifestyle in any of the spectrum's from conservative to liberal. I used to, and still do, lean more to the liberal end of the spectrum, however, I have been challenging myself in this area by listening to conservative intelligence. I grew up in conservative ignorance for the most part, but some of them were enlightened, so I do not lack the conservative viewpoint. Lately, I have been looking at the irony of liberalism speaking out about labelling and words, yet censoring other's freedom. The liberalist marching and yelling, insisting on immigrant's rights while neglecting the rights of the people who call the country home, proper name insistence, "advocacy" taken to extremes, yet blindly forgetting the core issues of WHY...neither approach has been satisfying. In both polarization's there is hypocrisy and the neglect about some true issues because of the hype of the fight.

Maybe I have become too comfortable in this word called 'advocacy' and forgetting about the actual reasons I wish for equality, justice and belonging? My re framing of the *Wal Mart issue years ago, brings into mind this change of stance (see bottom of post for more) among my other cliche liberalist mindsets. Don't get me wrong. I am glad I had those stages and these issues do need to be thought and activated on...but I am also determined to challenge myself when I get too comfortable in a stance. I also need to remind myself it's important to sing and dance. To ENJOY and savour whatever morsels of goodness life has offered up.

As for Schooling, my mentalities are echoed in John Taylor Gatto's book "Dumbing Us Down" and "Weapons of Mass Destruction-A School Teacher's Journey through the Dark World of Compulsory Schooling." (Both found in my Library links.) The current school system that society upholds is still based on the Industrial Revolution's outdated concepts of pumping out factory workers. From bells, to desks, to 15 minute recess breaks, to grades, to social conditioning in the name of social "community." 

It's conformity. It is a babysitting service at best (which is unfortunately needed) and at worst, it shows our culture's outdated beliefs on achievements, possibility and quality of life. John Taylor Gatto was actually an educator in inner city education for decades, and he made some differences, but he knew from his experiences what issues we are facing within education. "Gatto asserts the following regarding what school does to children in "Dumbing Us Down": It confuses the students. It presents an incoherent ensemble of information that the child needs to memorize to stay in school. Apart from the tests and trials, this programming is similar to the television; it fills almost all the "free" time of children. One sees and hears something, only to forget it again.


  • It teaches them to accept their class affiliation.
  • It makes them indifferent.
  • It makes them emotionally dependent.
  • It makes them intellectually dependent.
  • It teaches them a kind of self-confidence that requires constant confirmation by experts (provisional self-esteem).
  • It makes it clear to them that they cannot hide, because they are always supervised.[12]
  • He also draws a contrast between communities and “networks,” with the former being healthy, and schools being examples of the latter. He says networks have become an unhealthy substitute for community in the United States."CLICK

    Alan Watt's describes exactly why I, amongst great anxiety and community protests, took my children out of school and in fact, some of the homeschooling mentalities too. "It’s coming, it’s coming, that great thing...." I didn't wish for my children to live like that. I didn't enjoy living with the destination always in mind. I certainly disliked the memorization and conformity to authority and dependence on others for self esteem. This wasn't community. This wasn't healthy socialization. It was a copying of peers within one age group listening to ONE teacher's perspective each year, with history framed by the winner's perspectives and a compete or defeat mentality. Many parents say their kids want to stay in school- of course they do! It is what almost EVERYBODY does. It seems appealing. There are 'friends' to meet and goals to achieve. But whom is the experienced parent? Whom is the adult who understands, researches and knows and to whom it is possible to evolve and grow into a new satisfying role with their children? Many parents do not have the option for alternatives because of their relationship with money which is a whole other mentality that needs to change. Other parents do not have the resources or the support which is a legitimate issue that has so many roots to address. Single parenting especially requires more support and at least the educational system offers something for them...which shows the tragedy of our current culture. 

    I realize I may be isolating people from both sides of the spectrum, conservatives and liberals, educators and homeschoolers, which is not my intent but an unfortunate side effect of giving food for thought. I do not think my way is the only way. In fact, I firmly believe I grow in my perspectives every year by reading conflicting resources and finding new ways to DANCE through life. Not in thoughtless abandon but sometimes that beauty of enjoyment, creates more inspirational change in the world, simply by living the musical. Sometimes, when I grow my mind, the result actually ends up being more enjoyment ( ironically.) Alan Watts was an ENFP philosopher. If he did not grow his mind or think outside the box or write his discoveries he would not have spoken or challenged the whole point of life. He would not have asked us to consider the musical or dance. So I do not think life requires blissfully dancing through it, but I do not believe life is a destination either. Part of music is thoughtful composition. Part of the dance is the pre conceived. Thus, I think it is both abandon and thought, at once, in a paradoxical swirl.  

    "If we thought of life by analogy with a journey, with a pilgrimage, which had a serious purpose at that end, and the thing was to get to that thing at that end. Success, or whatever it is, or maybe heaven after you’re dead. But we missed the point the whole way along. It was a musical thing, and you were supposed to sing or to dance while the music was being played."- Alan Watts.
    Post Addition: This post took a turn even I did not see coming until I wrote it. I realize it will probably tick most people off on some level, which isn't my intent as I love harmony but seems to be a great side effect of simply BEING ME and sometimes writing about it. Which I do not apologize for. However, I also realize it was a lot, unexpectedly, and that there is more context to consider along with many deeper root issues to what is discussed. I do not see me posting a follow up anytime soon, as there is a lot going on in our world. Stirring the pot is actually not one of my favourite past times even though it may seem like it is. I tend to be considered rebellious which is so ironic, because I am very focused on harmonizing in the world, yet I also believe in hashing it out in writing. This post just happened and I am unsure why, but I still felt it was important to write. If you look at the post I wrote before it, you will see the day to day in wish I strive to live my life...the magical existence of being. If you want more information and know me personally feel free to shoot an email and I can send out a few podcasts and books that may not have made it to my Library yet, as my depleted energy allows. Until then, my Library link above is a good place to start for curiosity... The next post I hope to write will be a contented, frivolous post all about records and my newly found rooted project, which probably would have been more appropriate for this post but oh well.

    *Several years ago we were anti Wal Mart and all that came with that mentality. The whole advocacy movement based on food choices and the places we could and would not shop at, because of the way they treated workers or third world rights...however, a particular moment challenged me in this area. A disabled worker that had worked at Walmart said, "They may not give me the best wages but it was the only job I could get. I also liked it. I liked greeting people. It was one of my only opportunities. If you refuse to shop at a place like that- you are only hurting the little people like me because our jobs our cut. You are not hurting the big guy in charge...my only job is affected." Hearing that, I realized that this could be applied to the sweat shops and factories that have lurid conditions but extend life in the context that they ARE. It is one thing if I go to the source to make change. If I personally know a CEO of the company than it IS my responsibility to help them see ways to improve their businesses. If I can affect change by my context I should...but if I do not..if I am not going to travel to the sweat shops and get gritty and creative to think on ways to promote change, then I shouldn't be haughtily refusing and judging those who buy Nestle products or shop on Amazon. I realized that the way I affect change begins in the choices I make at home, how to create ripples in the world that I actually have autonomy over and how every person is different within context. A disabled worker at Walmart may want better pay and treatment, but another one may love their job and the payment is enough to get them by. If I know this labourer, my job is to go help them live the way THEY want to live...not the way I think they should live...There are so many more deeper roots of issues we advocate for that we forget about in the name of improvement. Improvement is a beautiful concept but it has to be organic, and with the person to person aspect in mind...there are so many other layers to this that would require one on one conversing. This is just a tiny example of where I was challenged in my snotty advocacy over eight years ago. Sure, in a way I was helping by drawing attention to these issues, but in most ways I really was not doing much at all other than giving airs and not thinking the steps through that I should do on a day to day basis instead.


    Song choices: The theme Dance was too easy but these are the songs that immediately popped into my head:
    Side note: I just got to watch this guy and meet him briefly. One of my favourite moments this summer was at the concert, dancing with my kids and husband next to my best friends...my friend and her daughters and my kindred and her husband...


     and this is probably one of my favourite feel good songs EVEH!

    Monday, August 14, 2017

    The Ordinary Magic (That maybe isn't so ordinary) Of Being Alive. Inside a Happy Moment of the Home of Anam Cara.

    It was one of those rainy nights in which the fireplace flickered across the carpet. Bellies were satisfied with delicious morsels of fish seasoned with avocado oil, dill and lemon, and mashed potatoes perfected to creamy swirls of satisfaction. The window was washed with droplets of sacred water. Instead of creating rainbows of sunlight, the light catchers dripping from the window casings reflected murky gray. Outside the panes, the Gothic arch opening in the front wall framed the muted green tones of the outer world. Gnarled branches grew over the frame and two trees stood guard on either side of the arch, roots twisted and deep. 

    It was in this environment that I found myself thinking upon time and other such importances, and I realized, with urgency, that I needed to paint my door a deep purple...I have been begging for a purpley red door since I realized black would be too hot on our south facing home, but I finally convinced my husband that it was meant to be. And then I laughed when I looked up the significance of a purple door (I believe that my best life is lived when I see the connections and significance in all things) and found out that a purple door means "a Witch lives here." We will still be painting our entrance a burgundy purple.
    On a night that sings softly of Autumn I feel the magic of being alive. Sometimes living is bone weary exhausting, but on soft nights with spilled lamplight, nurturing food and beautiful surroundings it would seem that the abundance of simply breathing can sometimes beget the simplest magic. Sometimes being alive is at it's most profound in the mellow beauty of meetings. Where nature and materially crafted collide in a fusion of elegant, inspirational beauty. The moment was too tender not to share.

    Our home is named Anam Cara, taken from one of our favourite books in our twenties. "You are joined in an ancient and eternal union with humanity that cuts across all barriers of time, convention, philosophy and definition. When you are blessed with Anam Cara, the Irish believe, you have arrived at that most sacred place: home."- John O Donnohue. It is to awaken the awareness of your own light nature and accept this in oneself, in order to appreciate the beauty in others.

    Anam Cara reflected warmth and healing contrasted by the drizzle of sorrowful rains. This home seems to be at it's most magical when the outer world is cold, dark or drained of colour. Inside the door, the warm hues of purples, oranges, browns, reds, greens, and yellows meld together in an infusion of inspiration and comfort. It's a haven for the travel weary...usually those souls who may not go anywhere but need respite from the bitter truths of survival.


    As the skies darkened, the crystals in the window began to sparkle subtly. They were slightly swaying reflections of the light around the room contrasting against the black of night. The Gothic arch was almost encased in black if it wasn't for the solar lights nestling on it's corners. The teary rain turned into a light torrent that was pounding into puddles and splashes could be heard on the sidewalk outside. The ancient dance of hearth and environment engaging provided a soothing backdrop to pondering and musings.

    My soul sang murmured agreements. Soft whispered sighs of, "Yes this is what it is, in the best of moments, to be alive." My children were laughing in their rooms, the sounds echoing off the walls and carrying to my sitting place, kissing me with muffled joy. My husband was comfortably sprawled over the couch across from me, reading his book, his mind traversing through time, lost in the celtic world of North Umbria circa 890. I could feel the magic of transportation humming from his aura. Looking up from my screen, my gaze raked his stocky form, happy that a man so strong and able was nestled next to me, restoring himself for the next day's labour. Back to my computer, the modernity comfortably mixed with the ancient. It wasn't jarring. It was simple. Instead of parchment and ink, I was drumming my fingers on a lighted machine, but the same feelings of old were coming out into the world through a medium.

    Sometimes, in the hustle of life, I forget that savouring and taking notice of what I have, opening myself up to the ordinary pleasures of BEING, are within my grasp most of the time. Time is the most treasured possession I have and too often I forget to pay attention to what is within my time frame. To appreciate and take stock of all that is abundant, good and right. Sometimes, Anam Cara has a way of bringing this home to my soul more than any other place can. Rightfully so. And sometimes I need certain conditions of nature to force my recognition. My husband and I are creatures of Autumn. We become our best selves in the season of decay. I am not sure why this is, but I embrace the tastes of Autumn days during the year that allude to the Season.

    Occasionally, I forget, even though my personality is a contrasting paradox, that the world can be at it's most beautiful in contrasting dualities. I forget to take notice and accept the polarities. The comforting contrasts can be jarring or they can be welcoming. The difference or range of which one experiences jarring or welcoming, is in a feeling of safety to explore the differences, the beauty to encompass, and the ability to change perspective.

    The soft light of my screen is enhanced by the golden glow of a lamp casting it's warmth on our coffee machine in the next room. I can almost smell the brewed aroma of morning. The gentle clickety clack of my fast fingers across the keyboard are off rhythm to the rain swishing across the roof and trickling down the panes of glass beside me. Both are beauty. Both can bring life and both can destroy life if taken to their extremes.

    Now, I shall go outside into the deluge and be in wonder. Restored and renewed, drenched in rain water, witnessing the growth of the earth and the shimmer of trees. May your ordinary magic be experienced tonight or tomorrow or maybe in one of your Todays.

    Song Choice: After I wrote this the lyrics of Across the Universe popped into my mind, "Words are flowing out like endless rain into a paper cup
    They slither while they pass, they slip away across the universe
    Pools of sorrow waves of joy are drifting through my opened mind
    Possessing and caressing me"- The Beatles



    Friday, July 28, 2017

    The Summer is my Winter Season PART TWO. Summer for The Chronically Ill. Easing Summer Guilt for the Chronically Ill. Bitter Truths and Acceptance. Tips and Hacks To Summer Survival.

    Introduction:
    *This is a follow up post to "The Summer is My Winter Season" which I wrote about HERE last summer. I ended that post with; "I love the wild roses and peonies blooming in summer. I adore the sunrises and sunsets. Thoughts of cold ice tea and home churned ice cream. I love hearing fires crackle in neighbouring yards or hear birds twittering in the trees.The vibrant colours, ever green landscapes and diverse skies feed my inspirational artist eyes. I do love summer for many reasons, but it's still my soul winter. I don't hate it. It's not my least favourite season but it's the one I struggle with the most. I love all seasons for what they are and each one has some downsides amongst the positive. The whole year visually is a delight to anyone who enjoys nature and being alive. Of course I regard summer with that same respect and some of my best moments have been created during the summer, but that does not lessen the effect on my mind...." Or my body. This post will be focusing on how Summer effects the body for the Chronically Ill and also how that in turn, affects the mind.*



    The Challenges of Summertime:
    Summer. That time of the year when everyone seems to be outside in the sun all day, laughing on beaches, trimming outdoor hedges, sipping on sugary drinks or licking dripping heaps of ice cream, exploring and adventuring. And those who suffer from Chronic Conditions (*a disease that lasts longer than three months and often has long lasting effects and day to day fluctuations in symptoms), have to fight the feeling that they are less than human for not participating in a 'normalized' way. Often these diseases are "invisible" in the sense that those who suffer from them can look normal. They are also often cyclical. There are flare weeks or times when a sufferer can barely get out of bed, but then there are moments when the body almost seems "normal" and is able to carry on day to day existence without too many issues. Many of these conditions can cause an increase in symptoms with time change, travel, new foods, weather, and time limits on sun exposure for varied reasons, which makes summer tricky. Add to the list, limited energy or mobility, and it is easy to see why Summer can be the biggest challenge of the year for someone who is sick.

    A Sense of Loss:
    Summer is the season I struggle with a sense of loss. I am typically not a lonely person. I enjoy solitude and hermitage. However, Summer can bring out my inner struggle with feeling left behind. What I also dislike about Summer, is that most of the year I can get away with not seeing people or not attending events, but in the Summer I feel it is more noticeable. I feel judged for being the person who fails to show up. This happens especially with extended family. I can see them in the winter, and everyone is tired or wishes to watch a movie while being sprawled on the couch. But in the summer there is this expectation to have energy at family gatherings and meals. To DO something, swim, stay longer, extend the time into a picnic, explore outdoors, or go on a spontaneous trip. And I end up being the person who not only declines, but puts a cork in everyone else's plans of inclusion. Summer is when I feel most misunderstood. I don't feel heard.

    The Pressure to Stay:

    People will say phrases like, "A day at the beach reading by the water will be relaxing." or "A summer BBQ will be fun! You only have to stay for an hour..." Then when I try to leave, the looks and questions and people pressuring me to stay or for my family to stay while I 'go have a break at home', makes it even worse. I don't want to be away from my family. I want to build summer memories with them too. I would rather do something that I can handle, with them present, because my time with my children and husband are precious to me. I don't wish to be left behind or away from them so I will try to show up when I can or present a different plan to them that may not include the others who do not understand or accommodate.

    The food at a BBQ could trigger a flare up and depending on the day, I may have already used up all my energy on a thing called ' getting up.' A day at the beach for someone with Lupus could be deadly. For someone like me, with Lyme's, it will mean fun in the sun for awhile, but then my hidden bacteria enjoy the heat and come out to play from their hidden homes deep in my organs. Thus, for weeks after a full day in the sun, I can be in pain or the Flu.

    YET, I remember days in the sun. I WISH I could go enjoy them without suffering. Sometimes I have to bite back envy when I see a family picnicking in the summer heat and laughing over a BBQ with friends. I remember what it was like. I enjoy aspects of life in that regard too even if I can not sustain the energy anymore. Sometimes, I will choose to suffer later for the sake of NOW. Sometimes, on the rare occasion, I CAN suddenly partake in these events without lasting consequences, so it can also be confusing for people to see the pictures of me doing the same event I declined of theirs on a good health day. There is a real sense of isolation in the summer I do not experience at any other time.


    The Chronic Guilt that Comes With Chronic Illness:

    I also struggle with epic levels of guilt. I have to fight phrases like:
    - I SHOULD have been able to take my kids out for more than an hour on such a beautiful day.
    - I SHOULD be able to swim for a little while anyway.
    - I am ALWAYS the one who has to say No.
    - I RUIN every one's plans.
    - I seemed like SUCH a crank but it hurt to smile.
    - I am SO BORING. I couldn't laugh or crack jokes like everyone else because I felt that migraine of exhaustion and through the brain fog I could barely hear what anyone was saying. My memory failed and I could not think of anything to say and it was hard enough to remember who I am let alone engage in stimulating conversation. I am an interesting person. Why could I not have conveyed that?
    - I can be such a full blown bitch. I just don't have the energy to pretend at nice anymore or the filter for my mouth. Why couldn't I have refrained from allowing my inner bitchiness to come out?
    - I enjoyed that person but they had not idea because I could not communicate that feeling. My brain froze up and my communication skills were impaired due to the pain in my body. I WISH I could have been better company.

    Those statements come to me in varied ways, almost every night of summer. I fight the guilt from the disappointment I hear from a fellow family member's voice when I say I can not attend their wedding or funeral or shower or get together.

    Flack and Expectations from Other Sufferers:

    Even my fellow sufferers of chronic conditions, can make living with chronic illness worse. Because they may not have the same triggers, so they may say damaging phrases like, "Well I can do that and I have ___." Or "You just power through and it's worth it."

    Let's not do that to each other.

    Some conditions can be a worse diagnosis but have less side effects than a slow going one. We never know what someone is dealing with. We don't know how tired their brain is or how depleted their body is. We don't know if someone is on the brink of hospitalization even if they are standing in front of us smiling and looking normal like usual. Fellow sufferers can be tough on each other, if they do not think outside their own boxes, to realize that every trigger is different. For instance, a bit of sun will make me feel warm and comforted. Due to extremely low Ferritin and iron levels, my limbs are always ice. The feeling of being warm can be a huge relief. But for my aunt with Lupus, I have to remind myself NOT to ask her to sit on the deck with me, for even a short time, in the sun. Little bits of sun are healing for me. I have to remember not to encourage the same sort of healing offhandedly to her.

    Accepting Chronic Illness But Still Suffering Depression Side Effects:

    The fact is, I have come, mostly to terms with my health. I know I have good and bad days. I also choose to look at my conditions as learning tools to embracing life when I can and relaxing into letting go the rest of the time. Yet, even with my mind healthy approach I struggle with depression. I don't want it all. But sometimes I want a little part of that freedom people with health take for granted. The gutting truth is that we, the chronically ill, ARE missing out on some aspects of life. Little things like being able to randomly eat a new food without paying for it. Or sporadically being able to have the energy to sustain a quick day trip. That is a loss that requires grieving from time to time. When we manage to do something "normalized" we get this insane high and we think, "Maybe I am getting better! Maybe I can do this activity." And so we bravely try another adventure on a good day in the future, or even the exact SAME activity to a devastating result. The previous high enhances the inevitable low moment of 'normalized failure.'

    Broken Dreams, New Dreams and Altered Expectations:

    I love Broadway and concerts. I love music and dancing and my soul flies when I can participate in any of my interests this way. But I have had to leave concerts I loved because I was sick or felt like I would fall over from my exhaustion. And when this has happened, I cried and cried. I WANTED to be where I was not. I paid money for the ticket. I invested hopes and dreams into the moment. I probably had to pull out my partner from the event and also ruin their time. Yet, I can't just turn back and say, "Oh I'll make my body trudge through!" My bodily limitations will not allow that. When my body is done with pretending- it stops functioning normally. I can't force my blood cells to grow larger with healthy red oxygen. I can't force the Lyme bacteria to go back into hiding or stop triggering food intolerance's. I can't ask my Celiac to give me a break when it is accidentally glutened. Even if I chose to have my Endo tissue removed from around my organs in a risky surgery, I would STILL feel the phantom effects (or so I have heard from all sufferers I know of the same condition.) I just have to go along with my body which sometimes feels like it is not my own. It feels like I am stuck in a vessel that is not truly all me. It is hijacking me for a terrible ride into pain.

    Kindness and Forgiveness to Self and Others:

    Carly Jennings wrote an excellent article on 8 Tips to heal from Autoimmune Disease HERE and I highly recommend the read. But I wanted to highlight two of her points;

    "Kindness: To yourself first and foremost because this is an incredibly difficult challenge and many people will not understand. You are doing your best everyday. Give yourself credit and be proud of yourself. Also be kind to those who help and support and love you. It will make you feel better too.
    Forgiveness: It will take time to forgive those friends/family who leave you and those who judge you. It may take longer even to forgive yourself and your body for failing. To rid yourself of the thick heavy guilt of somehow causing this or for being a burden. I believe long-term (invisible) illness is one of the biggest tests of character one can face. Dealing with the all consuming harsh physical reality alongside judgment and stigma is beyond overwhelming and unfair. Of course you are justifiably angry but after a while you do realize that your energy is better spent elsewhere and you have to begin to let it (and other people) go. Release it all and forgive when you can."

    Over the last ten years, due to chronic illness and diagnosis of different brain wiring, I have completely overhauled ALL of my relationships. Differing people have become my support while others have gone to the background of my life, while others have left or I have booted them out, completely. The ones I have the hardest time with are those who I have explained through writing or given chances at understanding, but STILL continually give me a hard time or silently sit on judgment about who I am. Or constantly ask, "Why?" I don't have the energy or desire to explain how I am doing outside of my writing so I will fakely say, "Fine."  I find it worse when I am accused of being selfish because they mix up with my limitations due to symptoms and differences with my ethics. I don't have a relationship with a few previous sibling like relationships because of this factor. I have had pressure to conform and I conformed for more than half of my current life. It isn't happening any more. My 'health happy days are too precious to me.

    The Comparisons from Family:

    There is a woman of my extended family whom is a cherished part of my support. She is an incredible person who has had her bowel removed from Colitis, RA, Kidney Failure, a slow growing rare form of lung cancer AND diabetes. She constantly hosts people in her home, makes us meals at age 70 plus, and travels. She doesn't understand me even though she deeply loves me. I have less of a cocktail of health than her, though my conditions are quite a mouthful too, yet I have less energy than her. I also come from a different cultural mindset and I firmly believe some of her conditions were enhanced from her giving too much. She is often stressed about people. She gets so tired out after company even if she enjoys it and I refuse to live my life that way.

    We are also completely opposite personality types. What she sees as love - I see as burdens and vice versa. She remarked recently to my mother, "What is wrong with her? She used to go to everything and now she goes to nothing. It is so hurtful. I am concerned about her and doesn't she care about anyone? That is just what family does. They SHOW up for each other even when in pain. I do it all the time. Why can't she?"

    First off, I am an introvert. I already was born with less energy for other people. Add to that being an Aspie, and there will NEVER be a lot of people at a time on my investment list. Especially if they need a lot of attention or support to understand my odd ways. I just can't invest that way. I give a lot but to a very contained group of people, whom I also get from in some way or another, in general. For the first 26 years of my life I gave and gave and gave to anyone who needed me. I was WAY sicker than I am now (believe it or not.) I also was miserable and stressed often.

    I will always love her and the rest of my extended family. I show up where I can. Send money often when I can't 'be there' or find creative ways of giving without too much physical effort.

    When The Pressure 'TO DO' Bleeds On to My Children:

    I also feel this pressure for my children. Members of the extended family will often come to my children with some idea of activities they can get involved in, summer camps...basically everything that was my childhood and I struggled through. Constant event, after constant event and yes, some are amazing opportunities. In my childhood, I had some epic experiences, but they did NOT make me who I am. I enjoyed many of them, but I also suffered and have no desire to repeat that life for my children. Add my chronic illness that has been going through a rougher time lately, and I barely have the energy to make sure my children know they are loved and taken care of some days. Although most of my energy will go to them in schooling and spending time with them...which I love.

    They are NOT missing out. We give them many other life moments that I can manage within my own limitations and time frames. We think outside the box. Yet when I say, "NO" to summer camp, my entire extended family takes it upon themselves to gang up on me, "Why not- you have to let go of your kids sometimes." or "It will be healthy for them." or "It's school credits. Why wouldn't you use this opportunity." And for months or years until the event is over and done, I will hear about it occasionally from one of them trying to convince me that the activity is the right thing to do.

    Occasionally, I will get justifiably angry at the well meaning interference. Yet, even though we are not always close, I do rely on my extended family for support and in a way we are excellent family to each other. I have had to implement more boundaries over the years and distance, but I generally appreciate the time I have with them. Thus, I have had to learn to let people go and let the anger go...or smile and nod, "Probably not, but thank you for thinking of my child." It's only when they become pushy that I decide to leave the situation or write a text like this later, "Thank you for videoing that summer camp for our daughter as an option. She felt very loved and valued by you by doing that. Now that you have given us that option we will think on it over the upcoming year and let you know if we decide it is something we will do. If it is not, she will still have a valuable and meaningful life. Its a great opportunity - just like many things in life. As a family we have to all be on the same page and some things CAN wait till she is older. While you can encourage her in her dreams and goals , please do not pressure her to see this as her only choice of fun or summer thing to do. We will decide eventually and are thinking upon it but we are in no rush to part with her for 3 weeks. She has only a few years left of being a child in our home and a lifetime of adult opportunities. Anyway, she loved that you thought of her and that means a lot to everyone so thanks." 

    I know that the opportunities are good. However, it is just as fine to live a normal quiet life without those activities. Our culture has a huge fear of missing out. Chronic illness has taught me that sometimes missing out CAN be painful but, once balanced, there ARE other valuable ways to enjoy life. Even knowing this, and seeing my children thrive and be calmer and more confident versions of their peers even though they do way less, still does not ease the guilt.


    You Did NOT Cause Your Condition:

    The fact is that the guilt that comes with chronic illness never fully goes away. It comes and goes. But some seasons are longer lasting. I didn't make myself ill. For two of my conditions, (Celiac and Sensory Overload that comes with being Autistic since birth) I was sick most of my life. Endometriosis began in my teenage hood when my heavy periods did not account for the insane pain I had every month. For Chronic Lyme disease and co conditions, the one doctor predicted that I was infected sometime in my childhood and it was triggered by the birth of my children. I still have no idea why Anemia plagues me on and off through out the years to awful degrees of oxygen deprivation. My thyroid nodule probably was produced by everything else. Last year's sleep test showed genetic insomnia- yay, another condition that enhances my inability to show up for life in a way that matters to most people. These conditions trigger each other. I didn't cause this pain so why do I feel the brunt of the responsibility for it? No one wants that kind of attention...especially those of us who have tasted the freedom of a healthy life once upon a time. "I believe long-term (invisible) illness is one of the biggest tests of character one can face. Dealing with the all consuming harsh physical reality alongside judgement and stigma is beyond overwhelming and unfair."- Carly Jennings.

    Hacks and Tips for Going Out:

    I've  had to learn to take the teasing with a smile when it comes to the precautions needed for chronic illness. I keep track of my disinfectant as much as my debit card. If I am going out, so is my disinfectant. I wipe down shopping carts and door handles. My children also know that anything they touch has to be wiped off first and their hands are always waiting for a application of sanitizer if we are out on errands in crowded places. Why? Because getting sick with a bacterial infection ON TOP of chronic condition can not only be more enhanced and painful but life threatening. Or it's just pure misery on top of a daily struggle. I know, I had mono for the first part of this Spring and I am still recovering. This means, anyone who is in contact with me, has to also be cautious.

    I have to pace myself. I will often get dropped off at the door of an establishment, even if to onlookers, it looks that I am a young, lazy thirty year old. But this conserves my energy for the outing so it is worth it. I make sure I have an escape plan and secondary back up plan for the times we do go out.

    I also take pictures on ANY day that I actually get out of the house or look nice. I know it won't last so I want to have some memories tangible for my children as proof that I tried. It also helps me to be grateful for my life to see myself smiling, even if I was tired, because of the gratitude I had for life.


    For more tips on summer hacks click HERE and HERE. If you have younger children click HERE for thirty ideas of summer fun while chronically ill. Also, check out the list of helpful links I left below this post.

    The Bitter Truth:

    I have really been struggling this summer, like each summer before. I valiantly apply perspective. However, on bad days, I have to admit, being chronically ill can be devastating. One of the worst parts for me is feeling nothing but wanting to feel joy. The other day we had a lovely time going out for coffee in the morning with a cherished aunt, followed by my children swimming in the grandparents pool while I laid down and talked to my best friend inside, followed by a trip to the theatre with my sister for the latest Spiderman (which we all loved.) I rarely see my sister and barely hang out with her for long periods. But I could not manage to think of anything to say.

    My head was pounding and even though the day was good, I just felt exhausted. It's an effort sometimes to speak. When I am this low in iron I can't finish the bars of a song. I love singing along to songs. It's really hard on me and sucks the joy out when the breath stops and I have to sit quietly to regain some oxygen. Later that night I felt incredible guilt. I felt like the bitch of the family again. I am known as the cold one with dramatic tendencies. The Rachel Berry of the family...dearly loved, fiercely protected, but constantly misunderstood and mocked. My husband often teases that I was born with a star over my head. That though I am hated by many, I always seem to have those ones who would do anything for me, no matter how much of a high maintenance case I am... This is true at times. My kids also say that watching Glee I am most like Santana, I say horrid things that seem very funny even though they are kind of bitchy. My daughter says it's what she loves most about me. It makes me relieved to know that even with my hard hitting comments and sassy tones, I am still loved. I have a sweet side too that has been well cultivated but if I had my filters off, I probably wouldn't be thought of as 'kind.'  However, I know how I come across at all given moments and it's tough when I am trying to convey love but don't actually do so. I know when I am perceived as not interested or 'off.' But in those moments, when exhaustion is the culprit, I can't explain and I can't even pretend...which is huge for me, if I can't pretend...

    On that outing, I barely talked to my sister. The kids and hubby took over and had a good time, but I felt disenchanted. I loved Spiderman but at the same time I barely laughed though I was smiling inside. It took too much energy to laugh with the others. I wanted to lie down the entire time and this time I wasn't even paranoid about the theatre because I was too tired to care. The next day, after an ok sleep, I suddenly felt the energy to laugh or entertain, but it was too late. I wished I would have been the fun sister...but then again, I only was that girl when my sister was a teen and even then, my INFJ persona lends an aspect of seriousness that doesn't scream fun. But I can still make my loved ones laugh by saying ridiculous things or my off humour, but I didn't that night and I regretted my exhaustion. Then I was mad at my illness for robbing me of simple moments. I was angry that illness forces me continually to reevaluate the meaning of life, the beauty of simplicity, and the bittersweet.

    Why must I always think upon these things? Why must I be the one who not only suffers from the condition, but has to manage it, explain it, understand it, and accept it? The bitter truth is because I have to. It's both beauty and pain. If I do not look at the dark and light of it, I will find myself either in immense depression or insane despair. It is what it is. I will be what I am. It's a cycle of acceptance, depression, inner peace and anger. Different days will trigger different phases. Perhaps that is why those who suffer from these conditions are often brave people who understand the meaning of life in an old soul way? But it's NOT glamourous. It's not idealistic though my idealistic self will add aspects of that into the picture when I write... it's real life which means it evolves and adapts and is never linear. It's gritty and unfair. Such is life. Chronic illness seems especially unfair because it is. It's not easy to spot, understand or cure...let alone manage. It effects everything and isn't just about the body but about the spirit and mind. I can have the most positive attitude, eat healthy, exercise, meditate, and do all the things I am supposed to do, but I will STILL have flare ups. I am sick less then I used to be due to strict management and the actions I mentioned above, but sickness side effects still happen. I am still playing host to the bacteria, the small blood cells and low ferritin, the reactive villi, the differently wired prefrontal cortex, the nodule, and the tissues wrapping themselves around my pelvic organs while being sleep deprived. I can't do much about any of that in the long run even if I maintain, manage, and help. That is a bitter pill to swallow. Even tougher is to witness what this ends up taking from me...moments as simple as summer nights...and "summer dreams being ripped at the seams..."

    To be honest, the lyrics that pop into my head every morning when I wake up are, "Each morning I get up, I die a little. Can barely stand on my feet. Take a look in the mirror and cry...lord what you doing to me?"- Somebody to Love, Queen. The rest of the song doesn't really apply to my situation but those few bars are incredibly accurate.

    Conclusion:

    It would be wrong to say I hate summer. But sometimes I do. The post I wrote last year HERE sums it up nicely, "In summary, summer, to me, is a tease or the flamboyant friend who is awesome for short stints and epic for a few fun times, but is not the friend for soul work, regular intervals or deep diving. Maybe for many people, that is the friend of choice, for a fun time. But for a soul like mine? It simply doesn't suit. In that regard, summer is my winter. It gives me sparse return on my investments in some cases, and exponential ones in other big areas. It is what it is. Beauty and brutal to my body and mind. But, at the end of the day, I still find that I regard each moment with gratitude. Each season, though affecting in different ways, brings out a different aspect of being. I love that. Our life, no matter the season, is a mixture of holiday simple life, and necessary work to live. But we enjoy almost all of it. We don't save our energy or time for "Holidays" but create a life that we don't need a vacation from. While we enjoy short spurts into the unknown, any season brings it's own beauty to our table. I suppose this is contextual too due to our living choices, educational choices, philosophies of life, and work choices, but each season brings both respite, creativity, joy, pain, burdens and struggles. We try to live in gratitude for the former while respecting the latter."




    *Examples of a Chronic Disease would be any Autoimmune Condition ( Lupus, Lyme, Celiac, M.S., Thyroid ect), Rheumatoid Arthritis, Anemia, Endometriosis, PCOS, Cancers, Dysautonomia, ect.ect.

    *While this post can somewhat apply to mental illness I left those out because I have covered my struggle with anxiety and depression in other posts. See side label for more.

    HELPFUL LINKS:
    At home Activities and online resources for people with Chronic Illnesses: http://standinguptopots.org/livingwithpots/self-improvement 

    9 Summer Survival Tools when You have Chronic Illness: http://www.huffingtonpost.com/lisa-copen/9-summer-survival-tools-w_b_5548406.html

    Two other people's experience with guilt:
    https://themighty.com/2016/05/experiencing-guilt-with-a-chronic-illness/

    https://www.healthcentral.com/article/coping-with-the-guilt-of-chronic-illness

    How to Overcome Summer Loneliness:
    http://thehealthsessions.com/how-to-overcome-summertime-loneliness/

    28 Things To Do When you Are Bored and Sick at Home:
     http://thehealthsessions.com/28-fun-things-to-do-when-youre-bored-and-sick-at-home/

    Another post about Struggling with Chronic Illness:
    http://carlyjennings.co.uk/health-healing/journalling/

    What to Do if You have A Fear of Missing Out:
    http://living-brightly.com/inspiration-harmony-bliss/when-fomo-is-real/

    Song Choice: Cruel Summer ( of course:) Bad Blood- HA HA because I literally have bad blood. I have an odd sense of connection:) and Counting Stars by One Republic as well as Fight Song by Rachel Platten.


    THIS is also a good list of songs for those with Chronic Illness.