Sunday, August 28, 2016

Obligations as "Privileges" for Our Children- The Problems Behind the Mentality Of Over Scheduled Children

The start of a new season comes with natural changes, growth, die off and perspective. It's part of the process of life. In Autumn most are preparing for school, extracurriculars and signing up for as many possible "privileges" for our children. In moderation, all of these things can be beneficial. But it's the interesting mentality behind most obligations that could be challenged. I often hear parents say that they see these sign ups as privileges. Indeed they are. But so are water, food, shelter and clothing. Yet, it would be ridiculous if we set ourselves up with constant food simply because it was a privilege. That kind of reasoning sets the stage for all sorts of excess and even a hidden type of guilt choosing, over consumption and not making room for others. Out of the belief in privilege we mistakenly think if we do not sign our kids up, then we are NOT setting our kids up for a good future, making them into whole beings, or giving them "enough" love. We mistakenly equate discipline and skill as love. Of course these are important stepping stones to wholeness but we have over emphasized them because our culture is all about being privileged. It's about finding that perfect job that makes a soul sing and living the life of dreams. But is that really what we want for our children? Deep down is that what our children wish from us?

We must deconstruct our choices and mentalities. Sometimes we think we are going against the crowd when really we are another form of baying sheep. Of course, there is nothing wrong with being sheep either. In moderation we need some sheep. Just not an entire society full of them as the endgame goal. Why are privileges "privileges" in the first place? What does this mean in our lives? Why do we believe we need to cash in on most of them? Is there another way to encounter the same value without exhausting our time, resources and children? Can our children be loved simply BY being? Can they learn love and other valuable attributes without joining a sporting event, music lesson, second language ect? Can they not learn organically themselves based on their interest with us supervising discipline when absolutely needed? Should we not be a facilitator instead of controller of our children's desires and gifts along with challenges and needs? Oh but they must be equipped with the skills to find the best career to enjoy! What about simply teaching them to enjoy everything...including the mundane and mediocre? The life lived in the ordinary and what beauty to be found! What about the value of boredom as a step into creativity?

A privilege by definition is a right, immunity or advantage granted to a certain people group. Why are we holding this up as something to cash in on? Many atrocities, judgements and prejudices are committed in the name of privilege. Ask any minority group. There are many advantages too of course, but there are also valuable lessons to be had in not being privileged.

There are hard knock rules of life that give underprivileged children the grit to get by in a harsh and sometimes unfair world. Not that privileges are bad within themselves. Each of us have privileges that contribute to our glittered viewpoints. I am writing from a place of privilege because I make most of my own choices, have my own autonomy and am middle class. On the flip side I know what it is like to not be in the people group who have the advantage culturally to succeed. I also know what living with an impairment is like. In that regard I have learned valuable lessons about BEING. The tough questions are ever present. This has damaged me and served me equally. I am glad that my childhood was not spent focusing on my abilities. While there were aspects of that, most of my childhood was spent with free time, responsibility within that time, and allowance OF time. The part that was focused on my abilities I now receive therapy for.

What does it mean to have a disability in a world that prizes ability? A world where slogans for those who are different even include the words "see the ability." Well intentioned and true in some of their worded merit, but limiting within themselves. People should be seen for whom they are; a unique package of beauty and struggle, strength and weakness. Instead we should just see beyond. Beyond package, beyond words, beyond ability, beyond mind into the soul...the genuine, innocence and soul that IS. My particular slogan is supposed to be a puzzle piece. Something most of the autistic community takes issue with but those who are parents of the Autistics and those even trying to help... promote. That is usually how it goes. We don't want to be seen as a fascinating puzzle. We just ARE. Of course there is education and support to go along with that but it first comes from a place of love. Slogans, no matter how well meaning, only further complicate the issue. They veil it with more misunderstanding and cloak US with further stigma while trying to free us. It's ironic and unfortunate. On a larger scale it also factors in to what we choose for our children in the first place. Education, improvements, and preparation. What are we preparing for? Another cog in the wheel of the work force? Another life like so many of our peers that are unsatisfied, constantly searching, scared and exhausted? It's one thing if they join the workforce because they have learned that any life is of value. It's completely another to try to rise in it because they think that it GIVES value. There is a difference.

I will be happy if my children work at Subway their entire lives and enjoy their down time, learn to manage their money so that they can live within their means and validate all of their own experience...the messy and neat. If they struggle with depression because they are prone to it but still see that in that they ARE, it matters. If they need to go on disability because they can not fit into culture, THEY STILL ARE. They still give and they are still valued. If they are bored, that they learn how to give time to find creativity. I will also be happy if they decide to be a lawyer because they love helping people and they love using money wisely and enjoying it. If they prefer to spend hours alone working at a job because it is what comes naturally to them, so be it. What a person really desires they will find a way to do, no matter most of the odds. No matter what "privileges" of are joined or not. What exactly are we hoping for them to achieve?

Before we sign our children up for another music lesson or sporting event we should ask ourselves a few crucial questions. Why are we doing this? What does it mean for US? What does it mean to them? Where in our story did we get this ingrained belief? Even if it is a good belief, could there be a question or caution within it? Why is this particular music lesson (or insert event here) important? Can our children learn the same values without putting out that money and time? Can we personally vouch for that valuable resource of money and time? Are we considering our exhaustion, borrowing money, borrowing time, and other hindrances to society as part of the equation just as equally as we are considering the benefits? Are we buying into these societal norms because we believe in research, funded by programs that promote and make money off of these events? Because they give jobs and make our society go round so we become part of the cycle because everyone else is?  Just because we take a different perspective on it, however healthy, doesn't meant that we might not need to step back and question.

At the end of the day we will all make different decisions. I don't want mini robots of me because I value individuality and freedom. Plus I secretly enjoy aspects of the crazy sign up sheets... because it means other people are super busy in their lives and less likely to be in mine. Yes, I benefit from it too. I also love that after school times are often full of parents running around which means life is more likely to be quiet for my children to explore. I value that because I am a quiet soul. I realize for others who have a extroverted souls or a heart for services may want to meet and greet as many people as possible. For those children, it actually may be important to be in a few of these obligations/privileges. But those children are certainly not the norm we portray them to be. A busy society means less likely to get into trouble, to be rebellious, to THINK, to be more creative and thus to be more effective. If effectiveness is a all means...but most people want more for their children.

At the end of the day, ALL children want to know they are worthy and loved. This will be a large contributing factor in regards to content, whole adults. Most parents want their children to feel love and thus pick a lot of misplaced ideas of what this means instead of giving the children what is most fleeting to them- TIME. Childhood is only a quarter of an average human life. They have plenty of time to be effective adults and plenty of time to learn. In fact, when their brains have matured they will learn the lessons of discipline whether through hard knocks or fantastic support...but the children who have love do have an advantage and indeed a privilege worth it all. The children who do not, also have the possibility to succeed despite the odds and validate their own existence.

Each child can learn they are worthy because they exist. Not because they know two languages, play the cello, or can pirouette. Oh but these things give them more to enjoy. Really? So a child who twirls clumsily is less happy and aware than a child who can ecarte? Are they more passionate simply because we define these art forms as passionate? Are they more driven because our perceptions of ballet inform us that obviously a person who performs in ballet lessons has to be driven and disciplined? Yes, yes there is something to be said for the love of ballet/dance/ ect.. I do know dancers who chose ballet because they LOVED it, not because their parents or society valued it. In them, the spark is real. I am picking on ballet simply because it is one of the popular choices along with certain sports, the violin and second languages. Why? Because in previous studies these have been proven to enhance life. But we forget that many other aspects of being can achieve the same effect if we only open our inner eyes. Also, ballet, the cello/violin, second languages, basketball/hockey/soccer, ect. whether we want to admit it or not, are associated with money, privilege, status, sophistication, success and ease in life. What person wouldn't be tempted by that future package for their children?

 Our children should be allowed to pursue what they are passionate about. Yes, there are opportunities we can give them to explore options but how many parents force their children to continue piano because they believe one day their kids will be grateful? Maybe they will, but there would be other, just as beautiful skills or take it further (no skills but whom they are) that they would also be grateful for. Time itself, love or the merit of freedom and exploration, among them.

My point is any child will turn into an adult who pursues excellence in whatever they deem, whether it's waking up with a grateful attitude, enjoying the friends in their lives, or editing a book or whatever it is, if they are given sufficient time to value time itself, they will always value LIFE. It's not the action I take issue with. It's the age at which we introduce these things, the time and money debt we go into FOR them, and the ingrained beliefs behind them spurred by fear we don't even recognize we have. That niggling voice that says, "Will my child survive?" "Will they have what it takes?" "Will they 'succeed'?" "Will they be happy?"

Why don't we just allow what IS now. Give them basic skills and opportunities in daily life for problem solving and love of life? The truth is they may not make it into adulthood despite our best efforts. Or the most well balanced, educated child can still turn into an unaccomplished, unhappy adult. A babe who had a disability will STILL have a disability  in what culture is in majority, but that does not mean they are not worthy. We do not have to make up for what the world sees as lack. Because it's not true. We can rest in that perspective. We need to avoid marginalizing of course, but we also need to allow WHOM a person IS. There is a balance to strike between facilitating challenge and promoting self acceptance. We simply have to perceive another way and show that by acknowledging the difference, validating it, working around what needs to be to survive but also allowing what IS.

Will my children be better because I pick this mentality? Nope. They will have their own struggles and successes. Also life happens and is unpredictable...who knows about their future. But right now, they ARE and that matters. Letting go of outcomes but embracing the advantages when they happen too matters. Plus, it's easier for my husband and I to give them time when we are not running around. Part of our life enjoyment is loving the time with our kids. So it is also serving us.

It's good to value a privilege. It's also good to have a few obligations for the sake of a successful society. But there are many good things we do not have to continually participate in. What matters is what we choose in the end. Mostly, WHY we choose what we do. Sign up the kiddos for some fun. But even if they are asking for something, it does not mean they need to do it. My children have asked to participate in one particular event for years. But we can't afford it in our lives thus I have given them other privileges or opportunities that give the same attributes of growth within our own means and level. Each time I tell them no their faces fall for a bit, and they still ask at times, but they are given reasons and alternatives...I have heard that people are concerned that maybe I am allowing them to miss out on being a world class star in that form. So what? In reality, is a world class star happier? Maybe because they are doing something they love, but can someone love their ordinary bliss just as much? Deconstruct it further... Your own conclusions will lead your heart home. It may look differently from my may still choose the violin, the ballet, the soccer or the language lessons...hopefully not all at once, but that is your choice. Just ask yourself why, why, why? My son loves languages for the love of them and engages on his app. Maybe he will be fluent one day, maybe he will only know a few words, maybe he will forget them all. If our world suddenly switches to a different language he does not know, I am not worried. He will learn it. Life may be tougher because he doesn't know it for awhile, but the beauty about humans is we adapt. I want him to savour whatever IS. What is it you want for your children deep down?

Song choices: Bloody well right- Supertramp. Follow your Arrow- Kacey Musgraves

Saturday, August 13, 2016

A Post Inspired by the Song "That I would Be Good" . A personal Story of Being Good Enough Despite A Religious Background.

A friend pointed out a song from Alanis Morisette to me. Alanis was part of my formative years but somehow I had missed this particular song. I had a listen and was struck by the lyrics.

Growing up surrounded by various versions of christianity, grace was preached. Repentance and forgiveness were repeated daily themes. Yet, the conversations, the pressure, the sermons, the judgment disguised in prayer or in rebuking a fellow "sister" insinuated the exact opposite. I was a sensitive soul so this did not go unnoticed and while it had it's affects, I was also lucky that I grew up with a bit of a princess complex. I was very loved at home, adored by those who chose to love me, and felt (even when I had a belief in God in that way) that I was also un boundlessly loved by my "creator." Thus, I was luckily unscathed by most of this hypocrisy in theology. However, many of my friends were not. Unfortunately, because of strong beliefs, I unwittingly contributed to this at times even while trying to help. We don't realize how indoctrinated our speech can be until we have stepped out of our boxes. It's taken me years to get certain automatic phrases out of my vocabulary and still I tend to sound like a typical christian which is fine if I was one but this does not fully encompass my essence.

I was often preached to be "part of the world but not OF it." That the world had all these horrid consumerism, materialistic, evil, awful pressures and that christians were exempt from a lot of this because of choices to abstain and "Gods covering grace." What I have found is the opposite. Now fully immersed in what is considered a "pagan" lifestyle I have found grace. Yes, I admit that the world CAN be materialistic, evil and there is a huge pressure to consume, but there was in the christian sphere too. Instead of celebrities it was Michael W. Smith, Amy Grant and worship music (This post really dates me, doesn't it?) Instead of buying "wordly" clothes we bought clothes with ripped off captions and plagiarized sayings. Or with pretentious phrases like, "Love them, don't judge them" which were ironically judgy in and of themselves. I digress. So we were "set apart from the world" with our little ways of working around the system while ironically being a duplicate copy in a different form while still believing we were "good."

I remember many in my circle having massive secret self esteem issues. Made worse by the fact that if God loved them, they were not supposed to have self esteem issues. God was always supposed to be enough. If you believed in God and were suffering depression or an illness ect, different sects of christianity would have different fixes, judgments or verses or prayers to complicate the matter.

 I think the hardest stage for us was when we were stepping out of this. The first few years of our transition we were on the edges and we felt really annoyed by those "conservative, fundamentalist" christians who gave "the rest of us" a bad name. But years later, fully stepping out, we realized the issues became clearer, the grace was abundant, and life was less confusing. It probably helped that we didn't give a flying @#$@. When you are out of it, you care about love, but it doesn't bother as much when someone is fundamentalist or too Calvinist or too Evangelical or too Anglican or too whatever....eventually it's the same fabric but a different colour. You don't care when someone accuses you of being selfish...because you know your worth, that you have love, and you also admit to selfishness both for growth and life enhancement. Each one has beauty and each one has a bit of corruption too. Suddenly everyone is on the same playing field. And if something bothers you about it you can challenge it without it triggering much emotion, ignore, or focus on what is compatible between you and the other person. Suddenly everyone is enough. Suddenly everyone is both beautiful and brutal, including one's own self.

The secret I discovered was that I was still good. I was good enough. The following lyrics are by Alanis Morisette and underneath are my experiences with each;

"That I would be good even if I did nothing."
Where I grew up, deeds were everything. You knew a person by "the fruit they bear." Outward appearances, servitude, a good attitude...these were all things prized to show the God who may be. This pressure was especially tough on women. I remember most mother's day services were about the Proverbs 31 woman. I was asked to bake pies for events even though I did not bake. When I said as much they told me I was on the list and it was how a woman contributed to the health of the church and since I was a member it was important to do. Since I had young kids at the time I was already overwhelmed but my husband was quite conservative in those days so he pressured me to bake the pie. I went to the local store and bought one. Money that should have gone to our babies. A small example of what was asked of us on a regular basis. I was told I was only something if I accepted God. I was nothing without belief. I was told I was a lowly sinner, worthless, and the most selfish creature but all is redeemed through the Lord. Obviously, for a time I bought that. So thankful I do not anymore. Admittingly this was only one subtype of christianity and for most of my life I was luckily a member of a more generous orthodoxy of christian thought. However, the other strong voice in the community was constant "accountability" and never peace. Never good enough. Always watching your brothers and sisters and "lovingly" rebuking them in the name of Christ.

Stepping out of that addictive pace of "doing" was really tough on my spirit. At first I thought I was not good if I did nothing about most things. Now I am sick and some days consist of nothing. Yet I know I am still good enough. I am still worthy. My children and husband still love me. Even if they did not, within whom I am, doing nothing, I am still good.

"That I would be good even if I got the thumbs down,"
Being an outspoken writer occasionally has given me opportunities for definite thumbs down. I have had practice with disagreements, challenges and opinions on my character. The perspective I have chosen is that I was once one of these people who judge me. I was once in a completely different mindset. Also, being out of it, I realize how much it does not matter. We all have our own path...let's let one another walk. The beauty is often in the mistakes. We need to allow each other to make them. We can support, challenge or have a neat the end though, even if I may adamantly disagree, I have realized that the beauty of my freedom is that they get to have theirs. Even if I may believe it is damaging to the world or myself. They need to be on their own path. The thumbs down or disapproval to me means that I am just part of the world. We all will have people who approve and disapprove and if I am living for the thumbs up I am not truly living my own life.

 "That I would be good if I got and stayed sick"
This is probably one of the hardest lines for me. I had to gulp for a minute and ask myself, "Am I good enough being sick and staying sick?" The beauty in illness is what it teaches. There is a lot of brutal too. I have tried different cures, lifestyles, mentalities, spiritualities, and practices. Some  helped heal while others have managed a few symptoms, yet here I am, still spending days in bed or in pain. Am I good enough? I prefer to view this one through the eyes of a child. The other day my daughter was listening to "Mom" by Meghan Trainer. Her eyes filled up within the first line and she grabbed me tightly, "That is how I feel about you mom. You are my best friend and I love who you are. Nobody has a mom like mine." Awwwww. I replied, "Even when I can't do anything for you sometimes or be a typical mom?" She smiled, "I especially like it when your mad. You are hilarious. I like that you can be real and how you are... makes me feel good about everything. Even the bad things." I was blown away. My daughter takes the brunt of our household work when I am sick. She sometimes is MY caretaker so the fact that she said that meant loads more. I am good enough even though my body is broken. (See side label Anemia for more on this)

"That I would be good even if I gained ten pounds"
I have been there, done that and have gained ten pounds again. Before I was fifty pounds "overweight" and for years I tried many healthy eating habits and exercises until one day I went off gluten. Within three months it just melted off. But three years after eating healthy and fresh an extra ten pounds is back. In fact, I walk more and do more healthy things than ever before. Sometimes weight just happens. Due to lack of sleep, disease, or life. The first time this happened I was devastated. I felt so yucky. Luckily, I did not lose weight until I learned to accept my weight, otherwise I would have missed out on some of the beauty of being "overweight". What I have a tougher time with now is just the adjusting to fluctuations and the reasons why. An awesome song that helps me whenever I have body issues is Meghan Trainor's cheesy "Me too." Because we should all want to be whom we are. Anything less seems like a sad way to spend life. And I was one of those girls who wished I was Jennifer Lopez. But I have so many things Jenny from the block (lol) doesn't have...and she has many I don't have. We both have beautiful live's with strife and beauty. What is the point of wanting more? I have written about body image more in depth HERE and HERE. I have gained ten pounds. I am good enough. I am still my essence. Anyone who can't see that can walk.

"That I would be fine even if I went bankrupt"
We have ALMOST been here too. Years ago we were advised to go bankrupt. We actually didn't but those two years were hell. See THIS post for more. Money is a tough issue. To be honest, I don't know if I would have said I was enough during these years. It felt like we were operating continually from a place of lack. Money runs deep and our beliefs regarding. We don't know until we are searching the couch for basic needs or purchasing that diamond ring without a second thought, how ingrained our money issues are and how they add to our value. I had friends who did go bankrupt and looking back said it was the best thing that happened to them though hard at the time. We live and learn. It's hard but even still, within finances, good or bad,  the important attribute is that we are still fine within ourselves.

"That I would be good if I lost my hair and my youth"
Living with chronic illness and an old soul makes youth relative. Sometimes I act WAY younger than my age and feel like I am getting younger while getting older (CLICK) while other days I feel like I am way older than most of my decade old friends. Body wise, I don't hold up to my peers. I have to guard my time and schedule like a banshee just to be stable. I have lost my hair. Contrary to those with luscious locks understand, losing hair truly can bring on a crisis. Click HERE, HERE and HERE for more on that topic. What I have found? While sometimes it is important to fake it to make it (CLICK) acceptance is crucial. Hair loss has provided an opportunity to rethink social constructs, sexuality, and soul work and put them into a larger perspective. I am good enough.

"That I would be great if I was no longer queen"
Yea...I get this on so many levels. I am queen in my house. I love it and it would suck to lose that adoration and love, but there was the year our marriage was on the brink of divorce and I resented my children. There was that year when no one seemed to like me and I didn't know if I liked anyone either. I wondered if I would survive my love lost. Yet during that time I discovered crucial truths to being. I found comfortability in being anonymous. That was the time I learned that I do not need anyone to even remember me if I die because I am just a part of the world. That is everything and nothing. I found a strange peace in that. I was great within nothingness.

"That I would be grand if I was not all knowing"
I had a lot of answers when I was an evangelical christian. I was brought up with arguments and verses to back them up. The Bible was my ultimate authority. Now, while interesting, that book does not hold any sort of authority over me at all. Our years of adjusting from something telling us everything to everything open to interpretation were gut wrenching. Having more questions than answers seemed more than unsettling. In fact, we went through a couple existential crises as a family and as individuals. Now, I have a few more answers for myself again but for about five years everything was open to interpretation. The answers I have now are also open to growth and perspective. In my childhood, I had learned I was nothing without the Lord. That I was all but a wretched sinner with nothing but the blood of Jesus to atone for me. How terrifying was it to slowly question that and to unravel all my previous answers to life. Those were tough, tough years made tougher by those trying to convince us to be blind. Yet in not knowing we found a grand grace.

"That I would be loved even when I numb myself"
I'm human. Which means I will sometimes numb myself. Being an INFJ means that I abstain from most addictions but I would be lying to myself if I did not admit to my vices. I use music, chocolate, sex, sleep, decorating and purchasing to avoid feeling some darker things sometimes. All of which are good things in moderation. I am not a judger of individual people even though I DO judge social movements. Thus I do not often judge myself but if I am going to be tough on someone, it will most likely be myself first. I used to think I was such an underdog when I gave in to a numbing behaviour. Now I realize I am still loved by my husband when I do. I have that grace and acceptance. I am loved despite needing to escape sometimes.

"That I would be good even when I am overwhelmed"
Living with sensory overload (CLICK and CLICK and CLICK) mean that my life is often overwhelming. As my posts mention, I have learned to manage some of this and accept the rest. In my essence, I am good even when I am overwhelmed.

"That I would be loved even when I was fuming"
Ha! Well, it doesn't happen often that I am fuming but cranky? Yup. Plus I am passionate. My husband calls me his little spitfire. I know I am loved...especially when I am mad. My husband, for some reason, gets a kick out of me when I am angry. He says I am terrifying but also humorous. This is good for me. Because of my upbringing I was the toughest on my temper. I was always trying to stifle anger instead of honouring it and using it appropriately. My husband's love of my anger has taught me more about using it appropriately than any denial ever could. My children also seem to think I am funny when I am fuming...and believe me when I say, I am dead serious in those moments, but they dissolve it quickly with their acceptance. They have taught me how to also love them when they are angry...and allow them to BE and express.

"That I would be good even if I was clingy"
I am fiercely independent. But I am also clingy. That paradox factor again. It depends on the person involved. Usually I prefer my space, but if I get particularly attached for some reason I can be quite clingy. I have had to work on boundaries in the past. However, even if I AM clingy sometimes I am still good. We all are "too clingy" or "too independent" at various stages of life but within this, we are still good enough. We are still worthy of being human as we are.

 "That I would be good even if I lost sanity"
Lol...sometimes I feel I have lost my sanity and perhaps I have? Having a different wiring plus a personality that can be opposite of said wiring can make for some interesting complexities. Sometimes I look at people eating and feel like I am watching some alien ritual. I think people should poop skittles instead of feces and it baffles me that this can't be the case. I find most cultural traditions bonkers. But I suppose in general my sanity could sometimes be questioned. But I am still good. As the Cheshire Cat answered, "Mad, completely bonkers, but let me tell you a secret...all the best people are." Sometimes I envy the completely insane. And sometimes I think that they have more things right than wrong. It's like the Matrix or Adjustment Bureau of the brain. Whose to say what is real? I often feel like Alice in Wonderland. Except everything normal is Wonderlandy to me. Without sanity we ARE still.

That I would be good, whether with or without you.."
This is a tough one. None of us like to be completely alone. I thrive on being alone but I would still be devastated without those I love. I have had to learn though, that completely on my own, I am still good enough. No one else can define, make my choices or BE me. That is up to me. It has to be enough.

Song Choices: That I would be Good- Alanis Morissette, The Last Resort- The Eagles

Tuesday, August 9, 2016

The Joys of a Mediocre Life, Sporting Achievement and The Downsides of Award Ceremonies in Schools.

Post Edit: Music, sports and all things gloriously human are wonderful endeavours in and of themselves- this post is focused on how our awareness changes our perceptions and views and what this affects...especially when we uphold them as institutional "norms."

( Caption- when my kids were little ones)

Recently on Pinterest I came across this article by Krista Di gui What if All I want is a Mediocre Life? (click)

There are movers and shakers in our world. We need a balance of both. Of course we need the goal setters and strivers but in North America, the priority is emphasized on them and we need a counterbalance of those who shake the status quo. We need those who are content to sit back and BE. The people who are happy with a "mediocre life" which in reality is quite extraordinary. Krista writes, "The world is such a noisy place. Loud, haranguing voices lecturing me to hustle, to improve, build, strive, yearn, acquire, compete, and grasp for more. For bigger and better. Sacrifice sleep for productivity. Strive for excellence. Go big or go home. Have a huge impact in the world. Make your life count. But what if I just don’t have it in me. What if all the striving for excellence leaves me sad, worn out, depleted. Drained of joy. Am I simply not enough?"_ Krista Di Gui

A memory surfaced of myself sitting in a grade five gym class. I was watching my peers compete for attention and I was baffled that the teacher was giving mixed messages. The teacher told us to be kind to one another yet when we were in our game we had to compete, achieve and ruthlessly find a way to win. I recall sitting and thinking something along the child version of, "No thank you. What if I don't have it in me to play this sport? To compete and taunt my friends in a 'healthy' sporting style..." I was always an old soul. To some that meant "boring" or "Lazy." My report cards never failed to mention, "She could use more participation." or "Would like to see her achieve more goals for herself." And my gym scores were the worst! A lot of my scores were due to unknown Dyspraxia, but even without that factor, I would never have thrived in gym class. I didn't want to compete with my peers - I wanted to harmonize or advise or challenge them on an equal plain of diversity. I was the one who choose to walk around the school at recess having deep conversations with a few close friends over playing. 

"She would shine if she could try a bit harder to go after what she wants." Wait, what? "SHE wants?!" That was a misplaced phrase meant to convey what the teacher wanted. The beliefs about hard work, value, impact, team spirit and all those ra ra ra phrases were meant to create a conforming team that would compete to achieve. Which is fine sometimes, but as a school goal I found it interesting that the sports teams were the focus of budget, time and that even the parents seemed to misplace the value of these teams as something higher than should be.

As my own children have aged I have challenged a few people kindly on this mentality. In the end the basic argument they have is, "Well it has been proven that healthy sport is crucial to a child's development and a healthy society. It's a way to build team spirit." Um no it's not. It may SEEM like there is team spirit, but if you take those children and put them on separate teams they would ruthlessly tear each other apart in the name of the game. There are other gentler ways that are just as effective. Yes, sports have their place and do help channel aggression into a safer manifestation but sports are not the only way to teach children loyalty and how to work together. A healthy society is one in which each individual can find meaning, no matter whom they are, and find a way to give this meaning in their own special way. Not by being another effective cog in the wheel for achievement and prosperity.

(Lol J.P Sears Satirical's always crack me up...)

Sports are a channel for body fitness and awareness and a channel for countries to compete without war, but in basic form sports are just another cultural way to promote achievement. If you are an avid sports fan due to enjoyment or because of the beauty you see in the movements or functionality of a team- good on ya.  As a whole sports still have their place as a practice but let's be truthful about what it is all about. (Music has also done this while ironically trying to combat it- same issues with a different format...competition and achievement instead of beauty for joy's sake.)

The last straw for me, when my kids were in school, were the award ceremonies. Looking around at the hopeful faces and crushed spirits hurt my heart. Of course the same kids received the same awards every year. The same parents would proudly show off the medals of their kids. For the school it was a way to show "Hey look at these few kids who uphold our amazing standards so well. Look at what we taught them." For the parents it felt like their children were considered an extension of themselves and not their own unique vessel. Why were we putting children in a spot to think that these awards held some sort of meaning over their lives?

Of course there were the participation awards that everyone got but we all knew that was a joke. There is a time and place when we should honour brave acts of kindness or physical accomplishments, but an end of the school year "celebration" is not one of them. Yet our whole society is set up like this. From grades, to sports, to family events to church to spirituality. It is ingrained in us that pomp and ceremony are the big moments in life. Private and Public schools hand out the academic achievement awards and behavioural awards. This practice, based on competition and teacher/ student relationship, becomes the center of wrapping up the year...and most times it is not the celebration that the child actually needs.

Achievement Awards could be put under the category of Discrimination Awards in some cases. There are children who thrive under pressure (during tests) and can sit appropriately at a desk. There are children who can not. No matter how hard they try. It's not about rebellion in most cases, or for a lack of trying. It's about certain characteristics that not all are born with. Many children with undiagnosed learning disabilities, dyslexia, memory problems, or other disabilities never get the privilege of an award.

"Smart awards" do not actually say much about the intellectual capacity of a child. There are many successful adults, who have paved the way in our society intellectually, who failed school. Not because they did not have brains, but because the school system was not set up for the way their brains were wired. Or they simply thrived on thinking outside the box- Einstein!

There are children I know who received the Academic Awards every year and are failing miserably at adulthood relationships and general life choices. Dear parents and children: These are NOT an indicator of future success nor are they an indicator of future failure.

 If a child does well at school it is one of the three reasons:
1) They tried REALLY hard or have parents who push really hard. (But some of the children who do not do well, try REALLY hard too- without the same results.)
2) They are naturally inclined to listen, replicate, and mimic back necessary information.
3) They are gifted or received tons of support.

Achievement Awards tell children that in life they will be rewarded for conforming to the "right" tests and the "right" way of learning, or that they will only get recognized if they have a certain type of brain. While our society is set up to be about competition, our school systems should not be a proponent of this. Not only does it single children out to be bullied by those who are jealous or as the "smartie pants" but it also singles the children out who did not receive a reward. It sends the message, intended or not, that they just don't make the cut. They just did not try hard enough. At the end of the year, if there must be a ceremony, it should be about celebration of each child's abilities.

In Private schools there are behavioural awards, or in my case "Christian Character" awards. Ours was called the "Daniel Award" and it was given to one student in the class, every year, who exemplified "christian" character by being kind, considerate, and all those other qualities. Ironically, my classmates and I noticed as we got older that it was not the pupils who were actually compassionate, empathetic and inclusive but rather those who were on sports teams and constantly seen, or those who were shy and never bothered to interact. Because interaction DOES involve tension, disagreement and sometimes a falling out...but that does not mean it is going against christian character. It's simply life relationships.

If we actually get into the "christian" doctrine, this practice goes against what it means to be a follower of Love. There was a scripture taught that good deeds are supposed to be done in secret. Another verse taught was to learn how to encourage each other and build each other up.

 The children who get picked by this are often the same children who received academic awards as well. Why is this? Because those are the children that the Teacher sees and is impressed with more often. The "Christian character" award is not going to go to a child who acts up in class because they don't understand. Never mind that this child is the one at recess who compassionately includes others. The teachers can't see everything and can not reward what they do not know. This divides children. The children who receive it feel above the other children. (It's not their fault. They are just kids who are mimicking their parents. The adults own this responsibility.) Often the child who acts out is the child who needs to see value in themselves. They are in need of more love and attention.

Those who do not receive it begin to wonder at their internal state. Are they actually bad? In my school, in every grade, as we got older it became more and more of a joke. People tried to AVOID getting these awards because then we got singled out as the "Teacher's Pet"or the "Goodie" ect. In Elementary, however, most took it very seriously. We would sit hopefully in our chairs begging for our name to be called. I have seen children cry after awards. Their innocent hearts do not understand why their beloved teacher would not single them out. ( Yes, I received the award for being complacent and shy in grade five. I wouldn't say I was more worthy than any of my peers and it bothered me.)

We are teaching children that good behaviour is rewarded. It's not always. Good behaviour should simply be expected. Also, questioning and determination are attributes of behaviour that are not honoured. This is unfortunate. We do not want little rule following robots. (Well, I don't.) Wouldn't it be more beneficial for children to learn to decipher good from bad on their own? If this practice is considered "christian" then private schools have a lot of thinking to do.

During the year, if a child is acting especially kind and a teacher notices, they should take them aside and honour them with recognition without other little eyes taking it in. If a child in the classroom is achieving because of extra work, the teacher should recognize it individually and praise it.

Unfortunately, those whom are bothered by the ceremonies are worried to voice their opinion. Legitimately, they don't want to be seen as "rebellious" if they take a stand against this practice. The people that often volunteer to be on a parent committee or school board are often people who value rules, tradition, structure, institution and method. Most school boards are full of people who thrive in social and structured settings. While that is great for the school and is not necessarily horrid attributes to have- it's not so great to the artists, disabled and differently wired who do not adhere to all of those standards. It is tough to understand differences if life/school comes easily or the structure makes sense.

Most seem to eat it up without asking a question. The awards set the tone for the goals of the school.  I have seen, not only the results of the Daniel Award and Academic Awards in adulthood, but the consequences in childhood. I have also heard many parents, who are very diverse in beliefs, be upset after the Awards on who received what or who did not.

 My son was one of the children who cried after the KINDERGARTEN awards. My daughter was confused after she did not receive the Daniel Award in grade two. But here is the paradox. I don't want them to receive the awards either. I would rather they were not left out from anything but I also do not want them singled out in a positive manner publicly. Instead I want to do this in tiny ways everyday. In the school setting, this just contributes to ego and does not foster being good for good's own sake. It's not just a ceremony. It says a lot about the values and principles the school takes over the course of the year. Luckily, I think some mentalities are changing and there are quite a few teachers who are beginning to question this practice as well. Why do we consider this just a harmless tradition? If we are a country who believes our educational standards should be based on equality and altruism- is this a practice that supports this belief?

I hear comments on the new granola way of living... a lot of people mock the non competitive, no winning sports functions that are happening now. While that suits me a bit more because playing for playing's sake is a beautiful way to BE, I still don't believe that is the way either. We are basically replacing one goal with another in the same format. Obviously, it's not going to work beautifully, but small steps in a different direction will eventually get us on to a completely different path.

A ceremony celebrating the joy of each child could be a easy alternative. The parents will get to see their children have their turn, the teachers can award every child in some form, and the children can feel equal yet unique with the words being given to them. It's not impossible nor is it utopian. It's quite attainable and though it may have some downsides too, in the end it's a far more reaching alternative. The ceremonies are long anyway. Why don't we skip the pomp and circumstance and instead take a few seconds to focus on every child or do that separately in a classroom and let them perform in the way they thrive best for their parents?

For multiple reasons, including the above, I had to pull my children out of the system. I couldn't handle the layered mentalities from character to learning to physical fitness. I was consistently stressed and one of those parents who I'm sure the school dreaded seeing. My children were not happy either. They had huge anxiety and depression (in kindergarten!) and their needs required something with less sensory overload. I found the first years of homeschooling tough until I found my groove in unschooling. Now, I LOVE it (see side label for more.) I know that many people can not afford the choice my children and I have, but many can not choose it because of their mentalities. There is a lot of prejudices wrapped up in homeschooling. For the children who are in school, my hope is that these issues will find alternative ways to grow.

 If we simply value the "brightest" stars we are discounting the backbone of society. The educational system and the church system (ironically) are the biggest culprits in setting us up for believing that bigger is better, that we need to strive for excellence, and that we need to compete to make it. Why are we judging our lives based upon what we can SHOW? We are not taught the value of the mediocre. The beauty in the plain. The joy of the ordinary.

I know I am enough. Deep down, even within the school system, I knew that I was different and didn't fit. Luckily, because of my support system, personality and coping mechanisms, I learned how to channel my "rebellious" spirit into a way that wasn't harmful to myself or others mostly. Despite this benefit, in my twenties I still had to deconstruct a lot of crap. I slowly eased out of all these systems and people groups...and I found peace, joy, happiness, love, self control, patience, kindness, gentleness, tough boundaries, appropriate anger, and honour of all things dark and light. It is enough. I am enough. That was never taught to me and if it was there was a contradictory message to go along with it.

I love my simple life. My cottage small filled to the brim with colour, life, and love. The joy I receive from those whom I love and acceptingly love me back. The contribution I make to life simply by being in it. The give and take to survive is a part of it but not in a conforming way, though that also has it's place.

I have limitations. Some days those limitations are tough. However, I also am at peace with whom I am within these things. I have found deep inner joy despite very hard life moments. It's a soft foundation of acceptance. In all its layered darkness and light, I love life. This is the joy of a mediocre life and I would not trade it, because it's an ordinary miracle. I don't care if my name is lost in obscurity after I die. I don't need to have that immortality to feel worthy. What I have- I have. What I am- I AM. My star may not be bright but it's illumination fills the tiny spaces surrounding. It matters in what it is.
*Regarding the Olympics...the video was satirical and while it had some truths I will also mention women my aunt recommended that are "fierce and labour for little money or glory."  Christine Sinclair and Karina Leblanc, Kadeisha Buchanan, Jen Kish, Clara Hughes... My aunt pointed out that these women show all kinds of ways to be human together. I admit that I am not a sports fan in general and do not know most of these women but sports have also contributed to positivity, rights for varied people groups and they CAN contribute to a general world outlook of positivity when not focused on sole achievement. There are biases everywhere...we write about the ones we see and hopefully also challenge the ones within ourselves. 

Monday, August 1, 2016

Let's Talk About Lyme- Because Usually I Refuse to

*This is a personal post discussing something I do not even really discuss with most close to me. Why am I diving in to the material now? Recently I had a flare up and decided late at night to read up once again, on my denial condition. EVERY SINGLE word applied to me and I knew once again that Lyme is what I have. Sometimes, one needs to vent or write to understand. This is how I FEEL and not necessarily what should be done.*
*I love the light on this photo. It was a mistake. Because I didn't realize the flash was on the mirror it did this neat floaty, gauzy effect giving the illusion that I'm holding light. Which was a little parable in itself. Most of my mistakes or diagnosis can be turned around into some sort of beauty. I have to always remind myself that just because it wasn't intentional does not mean it can not be made intentionally into something good. In this case, I am finding that hard to do...*


I have had about a decade of unexplainable pain, symptoms, fatigue and crazy symptoms that seem serious but go away a couple weeks later, along with other more continuous issues. A few years ago I saw several different specialists. Most were Naturopathic, but one of them was a former M.D. who now practiced Naturopathy along with Allopathy. I walked into his office with a print off of my entire last five years of blood work, medical history and issues. It was the first time I had paid any attention to what was called Lyme Disease.

He browsed through my files, looked up and said," I bet you feel like no one has ever figured you out? That all the doctors think that you make it up in your head but why you would make this up is beyond your thinking? Do you often go on antibiotics and end up sicker than when you started them with flu like symptoms and weeks of detox? (Yes) Do you often need time to recover from exercise, sleep depravity, heat, sugar, certain foods, alcohol and stress? More than the average person to the point where you think you are coming down with food poisoning or a very bad flu? (How did you know that?) Does your Anemia stay with you no matter how often you take iron supplements and change your diet? " (Yup) ...His questions got more personal and so accurate I started to sweat. I was worried because he was pegging me, which had never happened before. My gut started churning and I was worried he was going to say something like cancer or that I was officially dying.

Instead he smiled compassionately and said, "This is NOT all in your head. In fact, you follow a very typical and extreme case of undiagnosed, chronic Lyme disease. Unfortunately, the blood test in Canada is not accurate at all and the States blood tests cost half a grand to send away and a lot of times a negative can still mean a positive. What tells us more is your medical history, certain symptoms, other blood markers, and especially your reaction to antibiotics. Antibiotics cause a herx reaction or what is called bacterial die off in Lyme. Those with Lyme disease, no matter what type of antibiotic, will have this manifestation and often feel like they are dying or get very sick with antibiotics of any kind. Also, you have all the symptoms of the three co infections which I would peg by your descriptions as Bartonella, Cat Scratch, and Babesia. The Co infections in your case are causing even more issues than Lyme. Which is why I would say you are a more severe case. You are not crazy- you are run over by bacteria hidden in your organs and wreaking havoc on your body. Unfortunately, the cures for Lyme and Co Infections are only 70 percent effective and they make you sicker. It's about the same as Chemotherapy for a cancer patient. Some people can not handle the treatment thus they live with the Lyme. Eventually this can lead to death in some cases because of an unknowing Herx reaction that increases inflammation similar to Ebola, but without the bleeding, and organs shut down and a sort of sepsis. This is rare but it can happen without knowledge and managing of symptoms. Especially in a medical setting when you are given antibiotics without the support of IV supplementation and careful monitoring. Your choices are limited. You can either choose the antibiotic method. Unfortunately for you, I believe this has been in your system for ten plus years. It's not the same as being bitten by a tick and then being able to easily expend Lyme by a three month antibiotic treatment. Your biology is now completely altered by the bacteria that has lived in your body which is why you get some crazy pain and symptoms when triggered into die off. For you the only options of treatment would be Allopathic. Years of antibiotics that can cause other side affects and you will be in pain and barely functioning for most of those years and it's not a guarantee because even a couple hidden spirochetes in your body can cause a relapse. OR Naturopathic. Which is just as expensive running up about 500 dollars a month and without a knowledgeable practitioner and IV for supplementation you can cause great damage or even death. It will take probably an average between 6 months and 5 years of treatment. For you I would pick the longer amount. The results are the same as the Allopathic route...which means you may come out cured but with lingering issues, or you may have gone through all of that to be almost in the same boat. Most Canadians also have to travel to the States for a few years for this treatment. I know it's a lot of information. Do you have any questions?"


Did you feel overwhelmed from just reading that?

Of course I had questions, but none came to my mouth at the time because I was trying not to completely fall apart. Thus I decided to travel to another city to see a woman who specialized in Lyme and other Autoimmune Diseases. This time I told her NONE of my symptoms. Instead she hooked me up to a machine and without me saying anything, she ruled out Lupus. She asked if I had been diagnosed with Fibromyalgia and Irritable Bowel. I said Yes. She said that is common in my case and mistaken secondary conditions of another cause. This time I was ready for it. She asked if I had heard of Lyme and the co infections. She mentioned the same co infections the other doctor has asked me about. It was depressing. She charged 600 dollars for each session and all of the supplements for one month exceeded that. Then I took blood work elsewhere and they said all my markers that a Lyme person has are met. We could not afford to do the healing.

I am not the type of person who is community minded and would HATE raising money for myself or my kids. I also have limited time with my kids in our  home. I had already spent a few years needing aid from a woman who helped out in our home and I NEVER wanted to be that dependent again. I love autonomy. Being a person who already has minimal control over what my body does- means that I am unwilling to give it all up on a lower stat chance of healing. I am also extremely sensitive and I would never purposefully choose more pain than what I already have.

I armed myself with research, books on Lyme from the very few professionals who were actually educated on the topic, and began my depressing decline into obscurity. The more I read, the more panicked I became. I almost wished I had some other disease that was more straightforward, that was studied more, and that could possibly be removed from a surgery or something more solid. I spent months in this mode, barely coping because of a stress flare, and feeling out of control.

During this time, a few years back, word spread amongst our circles that I had Lyme Disease. A few people in the Lyme community reached out. I received a phone call from the head office of Lyme Disease awareness in my province. We talked for an hour. She was compassionate, kind and very informative. But after I hung up, I knew that I could not stay in this mode. I was DONE. I decided that, other than when I am in a huge flare and need to be reminded that I have Lyme and a reason for my pain, I will pretend I DO NOT have Lyme. I will not talk about it. I will not read about it unless I need a symptom explained. I will not put it on my medical records because the doctors treat me like I am crazy and ask where I got diagnosed and are cruel, doubtful and skeptical at best. I did not want to be known as a Lymie. I did not want to be part of the sweet community of sufferers- I didn't want to be defined by a disease. I did not want people asking me how I was feeling everyday. I did not want to be a damn medical anomaly.

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. This is how I dealt with my issues, probably unhealthily I might add, to enable myself to LIVE and stay out of a depression that basically pushed me towards death. I wouldn't recommend this approach unless you are a personality like mine. Even then it is important to read all literature, get second opinions, and talk to a therapist first before you allow yourself denial.


I am a feeler. I empathize to the point that it is damaging thus I have had to learn boundaries. My struggle with illness over the years has taught me many valuable lessons on what is important in life, what makes a person valuable, and how to BE. I have had to learn compassion for myself. Last year I had a spur of the moment discussion with a stranger who was hanging green ribbons over town for Lyme awareness week. I got out of my car and asked her how she was feeling. Turns out it was her son who had the disease. We talked about the weeks that are hidden in bed, the hours that are almost too painful to bear, and then the 'passing for normal days' that most people see and judge upon. At the end she gave me a big hug. (Those who know me will be surprised at the fact that I actually was a willing participant in a hug with a stranger. Weird. I guess I needed it.) She also gave me seven green ribbons of my own and encouraged me to tie them on my trees. She told me that the more awareness we have, the more doctors will start to see that Lyme IS prevalent in our area and that we DO need more education on it's manifestation, symptoms of chronic or dormant older Lyme and not fresh bites, and treatment options. I realized I was being selfish to not allow anyone else to know I had Lyme, so I hung the ribbons. It took a lot of guts to do that because the last thing I wanted was people asking me why I have green ribbons on my tree.

Disease is stretching. Not only physically but spiritually, emotionally and mentally. In order to have compassion for others, I needed to also extend it to myself. What this looked like for me is different for what it would be for others with the same condition. I decided that I would treat the side effects of Lyme at the very least with my Naturopath and Therapist. This means being on top of stress through therapy and having the little symptoms in my body explained to cause less fear. Naturopathy addresses any nutrient deficiencies or excess (once I had an excess of zinc which was causing a lot of issues) due to the bacteria running the system amok. My body composition is always changing because of the whims of when the bacteria come out to play, so keeping on top of the additional symptoms, help with my functioning levels. I also make sure I am constantly on top of these eleven things:

The above link is extremely accurate. My husband was astounded at how well it described me. Ten of the Eleven points deeply effect me and can be the difference between days in bed and a few good hours a day. I made the mistake of going for a deep tissue massage once and could not walk for a week other than from my bed to the bathroom. I was so sick. When the full moon comes out I am a mess and I hate showers. I thought these were coincidences...I used to love my showers and could not manage a good day without starting with a fresh shower. Now I avoid them as long as is hygienically possible because I feel so terrible after. There are so many little ways this disease has affected my daily life and frankly, I resent it.

I would also add a twelfth point to that list: Travel. Travel basically triggers sleep, temperature, schedule changes and many other factors that contribute to a Herx. It's sad but true. I can't really travel. Even a few hours away makes me feel very sick and usually takes a week to recover.

A note on exercise- it completely sucks to not be able to work out like I want to. I used to LOVE Yoga and an aerobic program I did. I felt fit and lovely. Years ago, when the symptoms started, exercise was the first correlation I noted between feeling like I was hit with a truck and poisoning the day after. There is a part of me that is vain. I like to be in shape. Not excessively but enough to be in control of movements and stay in the size I am most comfortable in. However, disease has changed my perceptions on that. Sometimes I still struggle with image but then I realize- other than disease I have everything in life I actually want...I am grateful and want to soak up the beauty instead of being a martyr about what I don't have. But that does not mean I don't feel it sometimes. For instance, the other day I was watching a person do yoga and I wanted to do it I told myself to do just a few easy poses, a couple little push ups and five squats as a start. It seemed feasible. At the time I felt fantastic, the next day I thought I may have to visit the hospital. That part of it really really blows. When it is a choice out of enjoyment and then the enjoyment has consequences. I try to walk as much as I can (which isn't a lot) to ease some of my muscle loss. I don't want to be totally incapable of my own body or deteriorate, but sometimes we don't have a choice in how our body declines despite our best efforts. It's a balance. One that is always changing.

Here is part three of a list of symptoms. This is just ONE page of many and I can check off almost all of these at varied times:  I try to remember that most normal people would feel a little disillusioned, depressed and overwhelmed if they read that list and could relate to most of it. Does it mean I will wallow in my discomfort? No. I realize others have it WAY worse and would trade diseases with me in a heartbeat. But does that fact stop me from my normal process? No! Compassion also means allowing emotion.

Usually I am good at coming around to acceptance and positivity in the midst of dark times. It's just who I am. On occasion, I can get to this point with Lyme but it doesn't last long. Thus, my need to be in basic denial. What is the point of engaging with the subject matter if I can't do much about it? I only treat and manage what I can but do not actually treat the disease itself. Sometimes, if I hear a story of a Lymie or Lyme Awareness on the radio or in the news, I get angry or I start to cry full fledged gulping sobs out of nowhere. Obviously I have not dealt with it properly and need to remind myself of compassion and perspective.


Many people with Lyme have Anemia. The one Doctor described it as, "The bacteria attack different systems in different people. The bacteria or spirochetes hide in organs, the lining of the brain, the blood, muscles and tissue. There are many instances like yours in personal accounts of the blood being continually depleted of iron despite no known other cause and proper nutrition in Lyme patients. We have also found that it's a lose lose situation for supplementation because iron actually FEEDS the bacteria and causes them to grow and then the bacteria feed more on the blood. If you start reading the literature from the rare specialists in this area you will see this pattern occasionally. It is only mostly narrative in theory and it is important to rule out other causes, but if you have ruled out all other causes and your iron therapy doesn't help much this is probably the case. Do what works for you. Go on the iron if you are desperate or if it improves a little but if you get a ton of flares and flu symptoms, perhaps take a break so the bacteria lessen, and then try again. Basically you will become a cyclical creature. You will have to consistently be in tune with new things in your body, symptoms, triggers and flares and honour what best manages these things."

Anemia is difficult enough on it's own but it's a condition that seems more straightforward to me. It is one I am willing to speak of with people. Thus, when people ask how I am doing, I talk about the struggles of Anemia instead of Lyme. Though it could be secondary to my condition, it is also a hard health issue to live with all on it's own. See below taken from HERE.

"Q: How difficult is to live with anemia?
A: It’s very tough. One of the things we learned, however, is that the ability of the body to adapt is tremendous. Over time, even people with moderately severe anemia say, “You know, I really don’t feel that bad.” 
Although people are fatigued or can’t do as much as they could before, they slowly adapt their lifestyle. Instead of walking to the grocery store once a week, they may go once a month and buy everything they need because they’re too tired to keep going back. There’s a lot of adaptation that takes place, but anemia can be very debilitating. "
That is my life in a nutshell: Adaptation. It is true that adaptation is an incredible talent of the body and the mind. The last check my Ferritin was at a 5 which is better than my former 2. I go for more blood work this month. It is amazing that I can do what I do with those levels. A few years ago, when my Ferritin was that low I did not cope well. (See Anemia label for more on this topic.) However, now on the majority of my days I can push myself to take little walks, pretend to be normal, and do things I could not do before. Have I been cured? Nope. I just adapted over time to a new normal. I also spend a lot of time in my bed or in my house. For the first time in 3 years I gained fifteen pounds. I feel worse about my body but I have more energy. My husband prefers me this way with energy but I am yet again adjusting to a new body image. I had just gotten used to being smaller and then again a fluctuation happens. I did nothing new to bring on the weight. (See diet label for more information.) It just happened and if anything may be attributed to my insomnia. However, a perk in energy has been welcome.
My life is compromised of management. People who do not deal with disease have no idea what this looks like. Just because I have energy does not mean I am up for more activities. It means that for once, I may have what looks like a normal day. If I am going to give my energy it will be to the ones who have sacrificed for me first. Which is my family, bestie ect. They deserve that extra output at times I can give it. They also deserve for me to manage my stress levels. This includes implementing boundaries, staying away from toxic people, staying away from most extroverted events being an introvert myself, choosing places of meeting that involve comfort and stability, and pampering hard choices with sensory appeal. They also deserve for me to manage my other triggers like heat, cold, diet, sleep, chemicals, attitude, minerals and supplements, and perspective.
At some point every day I have to ask myself, "Who controls your life? What type of life journey do I want and how can I achieve it while honouring my limitations yet still implementing a few challenges?"
A typical day revolves around my home. I try to balance achievement with being. My kids take a lot of the chores I can not handle but I do what I can. We explore, adventure and spark curiosity when my body is able and we relax, inspire and create when my body can not. At the worst of times they find their own activities to do while I lay in bed or try desperately to escape the pain with sleep. But that is only at the worst of times a few times a month.
If you have Lyme I would highly recommend most of these practices. MOST of these tips have contributed to a better well being and have helped me adapt and manage my symptoms:
I am unafraid of judgment. Being an Aspie, INFJ and general anomaly in many ways- judgment is something I have been dealing with since toddler hood. I put no stock into opinions of others unless they are educated, compassionate or a nurturing presence in my life. I do not value titles, degrees or any other sort of attainment in a person. I do not believe achievements make a better person. Nor health for that matter. There are horrible people who have diseases and horrible people who are healthy. Many people with educational titles lack character. There is a difference between being informed and educated and being brainwashed or conforming. Although I admire those who approach education with an open mind and dedication. Basically, what I am saying is that judgment is subjective. Even mine. It's contextual and based on so many factors.
But judgment is also a reality that I prefer to shelter my family from simply because it helps with stress levels. And boy! Do people LOVE to judge unexplainable conditions. Un- health is still considered a weakness in our society. We have a lot of Ableist mindsets subconsciously and consciously that contribute to our hidden prejudices. This is partially why I do not often speak about Lyme. Most of MY people are supportive even if they are baffled by the subject matter. Heck, I am baffled and I have had years of personal experience, research and reading to back up my knowledge, so this is understandable. But I have so little extra energy to give. I don't feel like wasting it on people who already have a standard in their head of human experience that they can't jump over. "I no longer have the time for forced friendships and meaningless conversations."- quote. Thus, speaking about Lyme in my particular context, feels generally like a waste of time. Yet, it is a reality of mine. I should honour it from time to time.
Do you have any conditions you refuse to speak of in general? I am not asking a disclosure of secrets but instead am asking to consider the why. It's ok if you still need to keep them close to your heart. Non disclosures are legal for a reason and important. There are so many complicated contexts, belief systems and experience that affect life with disclosure...which is why this post may be eventually taken down. On the flip side, while I firmly believe there are no completely safe places (although there are some rare havens), risks are still important to growth. Education is important through personal narrative. Each story matters no matter how crazy it may seem. In that we contribute to adaptability in the human race, compassion growth, and the journey towards acceptance....even if it may simply be one more step of acceptance within our own selves. It still matters. "you'll find that life is still worthwhile..."*
Post EDIT: A week after writing this post I found the book "Rain on a Distant Roof-CLICK The Story of Lyme Disease In Canada." I could have written almost all of it. It gives educational facts, medical politics, the mystery of Lyme, the failing of Canada's medical tests and doctors, and the personal autobiographical stories. There are a few stories that I would change slightly but otherwise I was astounded someone wrote about pain the way I experience it.

Song Choice: *That's how it goes- Michael Buble (click)

Misty Blue- Dorothy Moore click. Damn you Lyme (changes in lyrics applied to lyme- mine- ha ha what is life without a little twisted humour?) - "Oh it's been such a long time. Looks like I got you off my mind but I can't. Just the thought of you and my whole world turns misty blue. Oh (lymie) just the mention of your name- turns the flicker into the flame...listen to my baby I think of the things (I) used to do and my whole world turns misty blue. Oh baby I should forget you. Heaven knows I've tried. Baby, when I say that I am glad we're through ( which isn't true) deep in my heart I know I've lied. I've lied. hmmmmm. Just the thought of you, my whole world turns misty blue. Oh I can't forget you..."