Wednesday, July 12, 2017

Pick Your Poison- Life with Celiac and How to Deal With Doubters/ Health and Choices

*I actually have a pain journey of photos. I take them either after a bad attack, sometimes during or at the beginning. It helps me keep track plus it also reminds me of how far I have travelled in this journey. This post will share some from a few of the key moments of the last couple years of my pain cycles. This is for my fellow sufferers. You are BRAVE. You know your body. You are strong. Rest, be, advocate, heal and allow... I have not written about Celiac specifically because of all the flack I receive. Plus, "REALLY? YOU HAVE ANOTHER CONDITION!" Isn't high on my list of things I want to hear. However, I am constantly googling other's experiences, and the personal stories are what I treasure most, so here is a brief version of mine. Also, just because I also have Autism or know whom I am in other components does not rule out that I am a multi layer person with a host of differences and similarities in the human condition or can't have other "labels." Besides, labels are actual a way to explain, understand, grow and learn to enhance and manifest life.*

For the first time in my life, I ate Pierogis and they did not make me writhe in pain hours later or feel like my gull bladder was on fire. Because they were made with rice flour and guar gum. The Pierogis were gluten free. Two dirty words that are judged and often spoken with a sarcastic tone...."gluten free..."

Later, I told my husband, "I feel guilt about feeling so great on these items that are supposed to be worse for me than gluten. I have read all the articles on both sides. I know the fillers or gluten free substitutes can have more crap than a 'normal' Pierogi. However, I also know that we are smart about how we eat and make sure that our exposure to these things are minimal and we counter balance with vitamins, whole foods and healthy treats. But sometimes it is just nice to be able to eat a pierogi, or a store bought quick snack, or a gluten free pizza or a gluten free pancake and NOT feel sick after."

My husband replied back with his usual practicality, "It's just a different poison. Poisons are different for everybody. Define poison."

"A substance that can cause death or illness in a living person or animal...or plant or..."

"Exactly. Gluten is your poison. Thus, you eating the rice flour or Xantham gum or Guar gum occasionally and NOT suffering is a big deal. For those who can actually eat gluten without getting sick or having an intolerance or being Celiac- great for them! They may have other poisons or multiple ways their body gets sick or slowly dies. You are lucky you found out yours. So enjoy the food that doesn't make you sick even if the research says it might. Everything can be poison. Every food will have downsides and research to back it up...Some more than others. Pick what is right for you. You are the one who tells me this research-  so actually apply it to yourself."

Caption: Photo by my son because he thought I was adorable squeezing his stuffy when I was in a painful attack.

My mother doesn't wish to believe I have Celiac. Let me state that generally my mother is very supportive and she is entitled to her own opinion. I know what it is like to live with that doubt, from not only strangers, but from my original, organic family. My husband believes that it would mean she would FEEL like a failure on her part to not have picked up on it, or that she wasn't in tune enough. But she wasn't a failure and it was me that wasn't in tune. I let it slide on most days and go silent...but now I KNOW. Part of the reason she doesn't believe is because I did not get the confirmation Gastroscopy. Some prefer solid "proof" which is legitimate but also kind of funny because if one actually read the research they would find that even a Gastroscopy can miss Celiac if the biopsy is taken from unaffected Villi...which CAN happen more than one thinks. What is more of an indicator of Celiac is if a person is so sick, goes off of gluten and becomes better, takes gluten and is very sick again, and so on. My mother was quite in tune with most of my needs and always took excellent care of me when I was sick. She was always very nurturing and my children STILL ask and prefer her when they are ill. I am not as conscientious or even that great at hands on care. She is. I will be forever grateful.

Caption: The last time I was in the hospital for "an attack."

I will NEVER eat gluten again on purpose. Even if I miss the occasional glutened treat. It is not even tempting for me because the pain it caused is still fresh in my mind. I also refused to do the Gastroscopy for multiple reasons, but the main reason was that I would have to eat gluten for three months leading up to it for accurate results (because the gut can heal and not be as apparent if this step is not taken.) I had already been off gluten for half a year before the Gastroscopy appointment and I was NOT willing to go back to being hooked up to an IV experimenting with pain meds for the severe gut pain that had me in a fetal position for hours. I also wasn't willing to purposefully put myself in a position where I had a rash for days, abdominal bloating and pain, exhaustion, extreme constipation, head pain and other symptoms that eased up a few weeks off of gluten. Plus, my doctor was also Celiac and knew the symptoms and said I was a pretty clear case. Especially since my symptoms went from regular IV drips to needing help only a few times a year when I seemed to accidentally be glutened again.

Caption: The photos below are a gut related rash that develops every time I eat the triggering food. Gluten is one but I think there may be another not yet discovered. They are not zits as a specialist ruled that option out plus they will suddenly arrive and I feel them become. They start out as massive itchy boils and turn into zingy bits of burning pain...then after an hour or sometimes a few days they disappear. They cover my torso, back, sometimes neck and face, arms and sometimes legs. Then they go away once I am fully recovered.
My mother argues that we would have known when I was a child as it is a lifelong condition. Actually, Celiac Disease can develop at ANY age- click HERE for more. It can even be provoked by a virus into active duty. Celiac can also be triggered, because like any Autoimmune disease, different times of life can cause it to be apparent. CLICK HERE.  This article HERE  also debunks common myths of Celiac.

I think people also doubt Celiacs because they tend to have other conditions. This is also common. Iron deficiency, mineral malabsorption issues, and many other factors that come with this can also overlap with other conditions. It's not like life says, "Oh you already have a disease! You can't have two more!" or "You have Anemia and Lyme? Well Celiac is one condition too many...we will just skip over your body and find another host for this disease." In fact, if one has an Autoimmune Disease it is very likely for the body to host another condition like Chronic Fatigue, Fibromyalgia, Arthritis, Thyroid Issues, Anemia, Lyme Disease...the list goes on. The body can become a host to these because the wiring is 'off' or one is the root cause while the others are co conditions...or one develops later because of damage caused ect.

Caption: Three days after an episode and I can barely sit on my deck and hold myself up.
I don't blame my mother for missing the signs or not believing. I respect her own opinion, but when it comes to my body, I know what is right for me. I read the latest issue of Allergy magazine. I didn't even know there was a magazine dedicated to Allergies, but I saw it at the Drugstore and the main title had to do with Celiac and Eating Disorders so I bought it. The entire article felt like the story of my life.

Caption: I thought it was amusing there was an ALLERGIC living magazine...and I was surprised at how legitimate most of the articles were...It was a fun, fascinating read.

As a child I was very picky about what I ate. Because it felt like everything made me sick. I was constantly feeling yucky, had more stomach flu's than anyone I know. My best friend didn't throw up until she was a teen. That shocked me. I didn't know it was possible to barely throw up or get sick during a lifetime. I felt awful 80 percent of the time. I was always hurting or sore in my gut. I was prone to continual constipation. I was taking laxatives and these little tiny round stool softeners before I was ten. I hated that stuff.

I still have a tough relationship with food. I am always scared I will either react or that I will get sick. I rarely eat out or trust anyone besides my husband to cook for me. When I do actually eat someones food and ask for it again- it is a HUGE step forward. I have so many allergies and intolerance's it could take up paragraphs. It is ridiculous what I can't absorb and I feel like my list of what I CAN eat is getting smaller and smaller. (I am seeing a specialist who has her MD but is also a Naturopath about this in the fall with multiple appointments and more detailed bloodwork.)

Caption: Rash on my face after an episode and needing a few days to recover.

As I read the article pictured above, I realized that while I have never struggled with Anorexia (in fact I tend to have at least 15 pounds I can never lose) I DO have the kind of eating disorder they were speaking about. The type that is AFRAID of food. Afraid of the pain it causes. I know enough to eat healthy ish. I force feed what I can. But I dislike the pain associated with food that has been my general experience. Part of this is due to Autism and textures, but most of it is due to the previous pain I have suffered at the hands of eating the wrong item. I rarely ate and I still struggle with food. I have a love/ hate relationship with every item on my plate. I usually am desperate to eat my husband's meals but eat a few bites and I am done. He says I am the most frustrating person to feed yet he still tries. I adore him for that. The first two years gluten free were full of paranoia that I would suffer again.

Thus, when I actually eat something I enjoy, that does not give me gas or pain or a rash or constipation or the runs or any other gut trouble right away or hours later, I do a happy dance. And I will most likely eat that item a lot until my body decides it has had enough and I have a bad experience and it gets crossed off my list. My family can not keep up with what I can and can not eat. It is RARE for me to experience food as a positive experience.

Gluten tops this list. I would get wicked pain every time after I ate pancakes... even though I loved them. I got sick if I smelled toast because of the response I had each time I ate it. Most of my childhood foods were gluten products. We ate a lot of cereals, toasts, baking, pizzas, noodles and carbs because we were poor. I don't blame my parents- it was what it was and at least we ate. But I can not think of any of these items without feeling bloat and sickness. To this day Ichiban noodles mentioned create a visceral response and I have to hold back a gag. Although I loved them as a child because all the children brought them to school. And I was also weirdly addicted sometimes to the very foods that were causing me pain. This can happen because the brain can crave what is actually making one sick. I thought these foods were my favourite. Now that I have gone off of them for years I can't think of them without feeling gross. I still love baking but the gluten/ nut free baking rarely causes me any pain. It's not as pleasant of a texture for the most part, I miss that aspect of gluten products, but I'm willing to forgo that pleasure if it means less symptoms.

It is basically impossible to avoid all gluten. I know when I have accidentally been glutened because of the same symptoms that always present themselves. It usually takes me two full weeks to recover in my gut. I often think I have the flu, but when I don't throw up, I realize what has happened. Gluten can be hiding in spices, condiments or hair products. I am not extremely vigilant with care products and I know that something is still triggering my condition at least every few months.

Caption: The day after being glutened. 
When someone has been food poisoned they generally never want to go back to the restaurant that was the culprit or eat the same food again for a LONG time. I was slowly poisoned for years. Once I had the self control to actually DO something about it, I never went back. My final straw was the fourth time in a few months, I was hooked up to an IV in extreme pain and none of the meds were working. All the other tests came back negative and I did not have the flu virus or bacterial infection or even food poisoning in the traditional sense. My doctor came to see me and said, "I think you need to do an elimination diet focusing especially on no sugars and no gluten." That experience was SO bad...I even threw up a few times...that I went home the next day and gave away or threw out every item that had gluten or sugar in them. We had just grocery shopped and about 900 dollars in products was given away but I didn't care. I was THAT determined. I knew if I didn't go cold turkey I would never do it. It took me years to get to this desperate point. My husband witnessed my pain and he was also having other issues, like the runs for months, and the doctor thought it would be good for him too, because his test results were also fine for bugs or worms or viruses. We decided our whole family would make the change. Two weeks later his symptoms disappeared and I was in way less pain. Three months later I was back in the hospital for another episode, and two years later I had three more hospital trips in total for the same issue...but that was less than the average every three months I was experiencing before. I got depressed about this fact but then read it takes someone with large Villi damage up to two years to even BEGIN to heal. 

It has been four years now without gluten or processed sugar. I will NEVER go back. This was the first year I have never had to be hooked up to an IV drip with pain meds. I have been to the hospital for other reactions, conditions like Mono and normal life stuff. Just because I have Autoimmune Diseases, does not mean I will not also experience viruses or the occasional bacterial infection. But I have not actually had any sort of stomach flu for over two years. If I get a bug it is light or usually a form of gluten contamination or eating the wrong food. But it's not to the extremes it was before.

Let's say my mother was right and I don't have Celiac. Which isn't the case, but for speculation sake, let's say this was true. I would STILL not go back to gluten. Donuts, pizza, pasta, pancakes...they have all lost their appeal. I can occasionally enjoy a gluten free substitute of these...and sometimes I think the substitute is better than the gluten version. For instance, most baking done my way I prefer gluten free. But part of the reason probably is that I do not feel gross immediately after. The longer I have gone not eating these items, the less tempted I am. I can see adds that make people salivate for a donut and I feel nothing. I can smell the baking of bread and savour the smell, I will even go up and sniff it, but usually that sniff is enough for me. In fact, often I won't feel that great after and all my desire dissolves for the item after my sniff. The same happens to me for gluten baking or cinnamon buns ect. I think my brain recalls all the times bread made me sick even if I loved it. My only weakness is pizza. Sometimes I wish I could have a really beautifully textured pizza. Gluten free is ok but it's NOT the same. The closest I have come to a delightful pizza experience was the Rocky Mountain Flat bread Company's Gluten Free version.

Caption: One of many tests to figure out what is wrong...

Gluten is a beautiful option if one can tolerate it. Especially if it is not the refined flour but Heritage flour or Sourdough bread. These options feed the healthy bacteria of the body and if it's tolerated, make a great addition to a well rounded diet. I am not painting gluten as the devil for everyone. But forgoing gluten breathed LIFE into our family. We have less behavioural issues, we have more health, and we have less pain. We had to recognize what was OUR poison specifically. When my children are older they can try gluten and see what happens, but for now it is easier and has made such a difference in them, that we do not allow it. Maybe they are not or will not be Celiac? Maybe this diet has given them enough healthy bacteria that they will be able to tolerate a lot more foods better than I can? Maybe they will LOVE their glutenous foods. I ask that they never go back to refined sugar or sugar substitutes and that they stick with honey, stevia, or coconut sugar for the occasional treat, but I am fine with them experimenting out of the house with gluten. But not now. I need them to be on the same page and I have seen the difference in their lives and I am unwilling to budge on that. I will be more lenient occasionally with what they have and watch for symptoms. I am easier on gluten than I am on sugar or nuts for them, but I NEED to be careful for myself. My husband will occasionally 'cheat.' I think he has an intolerance but is not Celiac. I can always tell because he will stink up the room for an entire night when he does cheat, so generally I ask him not to. Plus, he gets immediately cranky and more sensitive and is prone to headaches. If he is going to eat gluten, he has to partake away from me and not in our house. 

Caption: Not even able to turn the computer on after all...too tired to do anything but snap a picture and lay back down...

I am Celiac. I know this with every fibre of my being. Occasionally I doubt, and wonder if my gut healed in another five years or so, if I could eat the occasional Heritage or Sourdough option. I would love to round out my diet...but I think that is more wishful thinking than actually NOT being Celiac. I don't think Celiac is my root issue but I think it is a crucial part of my health puzzle. The more I read up on Celiac the more convinced I am that it is the right diagnosis. The longer I am off gluten, the better I feel. That matters.

Some doctors also cast doubt on my Celiac because of the lack of the scope, but most do not. I also unfortunately agreed to a blood test for Celiac TWO YEARS after I was off of gluten which of course came back negative- if you do not eat gluten for three months leading up to it your body won't show the reactive antibodies....and that result is unfortunately on my chart if anyone cares to look. But my doctor pointed out that it should not have been included in my blood work when I was off gluten for that long and that Celiac is still a legitimate diagnosis for me. Everyone will have their own opinions. Heck, I was told I didn't have Mono, due to my lack of swollen throat, and that the blood test was just a precaution because my daughter had it, and low and behold, it was confirmed. Positive blood work is often not a lie, but negative blood work can often be faulty. The doctors were surprised that what I present did not line up with what WAS. This happens to me a lot. What matters is what I believe, what makes me feel good, and what health steps I take for a better future.

Caption: Depression as a result of feeling restricted.

Your health is in your hands. Drastic measures can sometimes be the very definition to LIFE. Most of us are unwilling to face the fact that we may have a condition we do not wish to have. Or have to forgo food we crave eating or change our lifestyles so we sit on the couch and cry about our lack of energy or constant pain. There is a time to rest or cry about chronic conditions. I have my moments...but health requires change. I may not be considered "healthy" but actually, I am pretty healthy for the conditions I have, because of the many changes I have made to lifestyle and diet. A disease is not necessarily a sentence to a horrible life. Sometimes, it actually provides an answer and key to the remaining bit of life being more manageable. Don't doubt what works for a person. It's important to provide other research, answers and  options, but if someone is making changes that create a better world for themselves, why do we sarcastically cast doubt or make them feel they are wrong? What is the use in that? If it works for them, celebrate it! If it gives them positive attention, why get jealous? Let them have it. Go out and find your positive attention. If they use it as an excuse not to live their most meaningful life, take that lesson for yourself and at least live YOURS. I may be Celiac, Anemic and a Lymie but I'm not dead yet. I struggle but I also have a lovely little existence for the most part... I don't wish for pity- I want support and understanding from the few I trust. From the rest of the world? Respect or at least to be left alone in my own choices. What is it you want from your health?

Song Choices: Carry On- Fun, "If you're lost and alone or you're sinking like a stone. Carry on! May your past be the sound of your feet beating on the ground. Carry on, carry on...But I like to think I can cheat it all to make up for the times I've been cheated on... We are who we are on our darkest day, when we're miles away, Sun will come and we will find a way..."

Bad Day- Daniel Powter,  "Sometimes the system goes on the blink, and the whole thing it turns out
Wrong, You might not make it back and you know that you could be well, oh, that
Strong, And I'm not wrong So where is the passion when you need it the most?
Oh, you and I, You kick up the leaves and the magic is lost 'Cause you had a bad day
You're taking one down, You sing a sad song just to turn it around, You say you don't know
You tell me don't lie, You work at a smile and you go for a ride, You had a bad day, You see what you like, And how does it feel one more time? You had a bad day."

Some nights- Fun- "Some nights, I stay up cashing in my bad luck. Some nights, I call it a draw, Some nights, I wish that my lips could build a castleSome nights, I wish they'd just fall off...This is it, boys, this is war, what are we waiting for? Why don't we break the rules already? I was never one to believe the hype save that for the black and white. I try twice as hard and I'm half as liked, but here they come again to jack my style. And that's alright; I found a martyr in my bed tonight. She stops my bones from wondering just who I am, who I am, who I am. Oh, who am I? Hmm Hmm. Well, Some nights, I wish that this all would end...Well...That is it, guys, that is all five minutes in and I'm bored again. Ten years of this, I'm not sure if anybody understands. This one is not for the folks back home, I'm sorry to leave, mom, I had to go. Who the fuck wants to die alone all dried up in the desert sun? My heart is breaking for my sister and the con that she called "love". And then I look into my nephew's eyes...Man, you wouldn't believe the most amazing things that can come from...Some terrible nights..."

Tuesday, July 11, 2017

After 15 Years Married and 16 Years Together/ Their Finest/ Learning to Embrace Life During Precarious Times.

To date, this was one of the toughest years of our married life together. Although I can think back to three separate years that almost tie for this one in a different way...Three crucially diverse struggles which differed from this year. Each in a different category. One I can not speak about, one was financial and was harder on both of us together (instead of driving us apart like the others did) due to poverty, and one was because of my Autism diagnosis. Those were tough years. We even briefly separated for awhile, not out of home, but in home, because of deep issues during one of those harder times long ago. This year was completely different, yet probably had more trauma packed into one year than we have ever experienced before. But I think it was good, to have previous experience with picking up the pieces of a married life in the past to build upon, with a year as devastating as this was.

Here we are, passed our 15 anniversary, and still best friends for the most part, even if it has taken me months to be able to say that statement truthfully. We are still healing. Still becoming. Still learning how to be together healthily once again with our new growth selves. I will admit that it took me three days alone with my husband to adjust to knowing what to do with him when alone. It has never been like that before. I could always just talk to him, or hang out and do my own thing, or find some fun for the two of us, when we were alone...but this year the children were a buffer for me. It was odd not having them around and I felt desperately in need of them. But after three days, we began to find our old groove again. A week later, and I am feeling the start of something new but I AM still adjusting. It's a new phase in our relationship. We are learning how to BE, separately and together, once again. Happily Ever After has happened and will again, but there are moments when the story gets a re set. This is one of those times.

For those new to our journey, we married young. See THIS  and THIS  post for more context and for posts written during the good times. THIS was last year's anniversary post because life was just beginning to get hard so song lyrics were what I was able to convey emotion with. THIS is why we changed our last name together, and to me, shows more of a window into our married life than most posts do, in how different we are together.

I was sick once again for our Anniversary... the week we were supposed to have off together tragically turned into a week that I mostly spent fluctuating between crying, being sick or lying in bed exhausted...and my husband just read beside me or puttered around the house. Luckily, we are also used to me being sick. My husband knew what he was getting into when he dated me as I was in emergency a lot back then. We didn't know I had Celiac and my regular foods were slowly poisoning me, and we didn't know I had Lyme. Both are newer (as in the last few years) adjustments for us, but the knowledge helps our story. I was sick the week leading up to our wedding and sick the day of with the stomach flu. Or so we thought. But interestingly enough I have been sick EVERY year the same week and sometimes a full month of parts of late June and early July, with the same symptoms and reactions. We are starting to wonder if there is a common factor we need to discover in this. If there is a Lyme trigger as a toxin in sprays outdoors, or allergies or foods I wouldn't eat otherwise...My husband was not shocked when I was admitted to E.R. AGAIN, after months of avoiding the hospital for myself despite multiple doc's appointments, the night before our anniversary. I didn't get home until three in the morning. I was a zombie on Benadryl for the following day, and when my tongue actually stopped feeling like a pound of brick, I needed time to be able to eat without paranoia and rest. So I forgot again, even though our 15th was high on my radar this year and the children were spending the week at my mother's. I was confused when there were flowers on the table and I thought they were because I was in the hospital, which was touching...then I realized they were for another anniversary that I was unprepared for.

I always say that I am lucky a marriage isn't a wedding...or an anniversary. All 15 have been miserable for me. But the day to day stuff between my husband and I? Most of that is worth celebrating or at least acknowledging. Maybe my weird health conundrums also give gifts? Turns out we have an additional week alone together. My iron is the lowest it has ever been and my cell size is tiny. Luckily, a Hematologist flagged my results and I am getting tested in six weeks for some odd, rare condition. I also have a stellar therapist who is also an MD who has taken regular care of me, something that is crucial to my well being. But I have finally adjusted to a few days without my children and now am in the beginnings of being able to rest, catch up on other aspects of life, and rest some more. My mom agreed to take the kids for awhile longer, and while I miss them and go visit them almost every day, my brain and my body needs this. I only am separated from my kids once every year or two, so I guess it is ok.

My husband jokingly remarked that I am like a Wring Wraith from LOTR...when I should be fainting or hospitalized as many are with my iron, ferritin and blood cell size levels according to online forums, I trudge through with this otherworldly stamina. Like I am already dead. Yet, I am SO TIRED, but I can look like I am functioning at average. I am not believed until my blood work is facing a professional and then they still will often be shocked. But this is what I love about my husband. He actually admires me for what I think is the pits. He actually thinks my struggles make me strong. He is often my best cheerleader and health advocate. He feeds me and reminds me to eat or sleep or even grab a sweater because my limbs are freezing in plus 25 degree weather. I shiver and develop goose bumps but I never remember to actually DO something about it. He asks me every night if I have taken my Iron or Vitamin D. He tells me to jump in a hot shower if I can't get warm or feel punched all over. He is often my radar for comfort in the outer world. He has become a part of my executive functioning and adapted to replacing aspects of myself that I struggle in. He is another part of my adaptive living as well as a friend and lover. I think that says a lot about our years together.

And I know I am good for him too. I know he would not have gotten through this year without me. In fact, he may not have lived. That is not an overstatement. There is a line in the film "*Their Finest" that speaks about not allowing depression or unease take the joy out of life and not to give "death dominion over life." That is what I cling to every day. It is what I have fought for this year. It helps that for my husband and I, our strengths balance out our weaknesses and this has served us well. He is my humour once again, and has always been before this year, and I am his light. His perspectives are more laid back which aid me in taking life less seriously, and my perspectives are deep enough for him to prod into the inner workings of his psyche. We are a team that has never had any interest in being a tragedy or a love story for the ages like Romeo and Juliet or Cleopatra and Anthony ect. Instead we want to be one of those couples that are never really celebrated but have a love that is kept spicy, strong yet average, in it's natural every day love.

Life WILL have hardships and it is natural for us to drift apart, be un-attracted to each other at different times, or grow apart....but it IS possible to come back home to each other, suddenly fall back into attraction, and grow back together. In the past it has taken patience, time, dedication, loyalty, awareness, commitment and communication. In the future it will require the same skills and time.

There was a line in the film "Their Finest" that particularly stood out to me, "It seems to me that life is so precarious and it would be a shame to waste it." Yes! A resounding and heartfelt yes! I turned to my husband and kissed him. Because I believe that. EVERY DAY. It is why I rarely stay mad at those I love for long. It's why I say "I love you" each time he leaves, I leave, I go to sleep or even after a fight. It is why I refuse to allow bitterness to rule. I give myself sufficient time to address proper emotions, but I don't wallow. It is why I do not allow myself to be burdened heavily by guilt for long. Instead I embrace life and savour the love I DO have. 

Partially this is due to health. It has been engrained in me since childhood. I have always struggled with sensory issues and disease undiagnosed until recently. Long term suffering that came and went. Pain unexplained but still vividly real. One day I was fine, the next hour I was in ER, and perhaps the afternoon after, I was happily running errands again. That is life with disease, chronic illness and sensory overload. And it can go two ways. One can either allow it to defeat, or be more determined when the good moments come to LIVE. What do I do when I am in so much pain? I pretend I am my future self and this self speaks to me, "K this will pass. Either by death or by time...and one way or another you will be out of it. So think of that moment. I am the you from that moment.You WILL get through this. You will have another phase." And if I am lucky enough, as I have been time and time again, to have some healthy or happy or at least struggling yet manageable good moments, I wish to not waste that time.

Time has always been precious to me. Especially ordinary time. Because ordinary means that there is contentment, a sense of coziness or at least an absence of trauma. Or perhaps there is pain, depression and struggle...and that precarious nature drives home the moments in between. At least, in my experience I have found this. And I think that is the gift I give my husband. He witnesses what most do not in my life. He sees me get up again and again. I often will deliver that line in different forms as a reminder that some freak accident could take any one of us- so what are we going to do with NOW?He sees me say, "Yes it is hard. It is pain but that does not diminish that there is beauty somewhere. And I will find it and enjoy it again." That spectacular now is the reason I stick through the bad times with my husband. I know deep down, that we are FOR each other and we have something special. Why would I wish to go through all this again with someone else who may not even get to the phases we have? Why would I wish to find a different sort of suffering? I also realize that not everyone has what we have, and they need to leave the situation, but for us, it has not come to that yet. The hard times are there of course, but I would rather travel the tough roads with him or apart for awhile, to meet up again, and revive the soul love we have. So I wait, or I fight, or I even give in to defeat slightly for a time but I never fully give up. Normal human emotion deserves legitimacy, and some circumstances truly do deserve time, but I try to honour that whilst still minimizing what I can to savour what IS. 

My husband has been my greatest beauty but also my greatest heartache. This year he provided more than enough heart pain to almost render me in to the depths of despair. Yet, he was still worth everything I could manage to show up with. He has picked me up in the past when I didn't think I could fight. This year he was broken. Not as an excuse to be less than he could be, but legitimately in need of help. Now he is getting back to himself, and now it is my turn to fall apart a bit...and I kind of have. Still, my soul is ever green. It may be wilted but the soil of my soul is ready to sow seeds of growth, even in the barren waste of depressed existence when I am unsure how to even show up as a person. Trudge on through. Become what IS. We still have had some beauty this year. Three gorgeous beauties are in our constant care to nurture and live life with. This I do not intend to waste.

He gives me euphoria and he leaves me sobbing in the closet. But mostly, in general day to day life, he gives me the gifts of normalcy and ordinary. Contented boredom thrown into daily chores, chosen schedules, minimal requirements, and plenty of time to love, savour and BE together. This is what I wish to focus on this anniversary. This is what I celebrate. This is what I hope to still have, if we are lucky enough to live another fifteen years together. 

The Good Witch recently had a Wedding Episode and I loved the little dialogue at the Wedding Ceremony;
"They're about to say I Do. Three little letters. Two little words. It's the simplest part of the day. But there is nothing simple about the things that remain unsaid. I do means...I do know I could be hurt but I am ready to be healed with you. It means I do want to try even when the fear of failure holds me back. And I do not know the future, but I am ready to be surprised along the way. And I do means, I do want your love, and I do give you mine. And nothing we will do will ever be the same because you and I will be doing it all together."

What a lovely tribute it is to be ready to be healed together...Happy Belated Anniversary love. You are part of me. An aspect of my soul that inspires and infuriates but mostly, pain, practical needs, joy, comfort...thank you for that provision of self and giving of all that you are. For showing up when you barely thought you could. I love you. Let em say we are "crazy because I don't care about that. Put your hand in my hand baby and don't ever look back. Let the world around us, fall apart. Maybe we can make it if we are heart to heart."

Golden Leaves by Passenger sums up this year best: "Do you remember how this first begun?
Teeth were white and our skin was young, Eyes as bright as the Spanish Sun. We had nothing we could hide.Now my dear we are two golden leaves,Clinging desperately to winter trees, Got up here like a pair of thieves, While the sirens blare outside. What's left to say when every word's been spoken?. What's left to see when our eyes won't open?. What's left to do when we've lost all hope and What's left to break when our hearts are broken? But sometimes...Do you remember how this started out? So full of hope and now we're filled with doubt. A dirty joke we used to laugh about, But it's not funny anymore. I fear I choke unless I spit it out. Still smell of smoke, although the fire's gone out. Can't live with you, but I die without. So what's left to say when every word's been spoken? What's left to see when our eyes won't open?What's left to do when we've lost all hope and What's left to break when our hearts are broken?...But sometimes

I thought of this song because I referenced 'Everyday Love'...thus Rascal Flatts and a throw back to the 2000's Country  "Each morning the sun shines through my window. Lands on the face of a dream come true. I shuffle to the kitchen for my coffee. And catch up on the front page morning news.Then she walks up behind me and throws her arms around my neck.Just another normal thing I've come to expect. It's ordinary plain and simple,Typical, this everyday love.Same 'ol, same 'ol keeping it new (Same 'ol this everyday love).Emotional, so familiar.Nothing about it too peculiar Oh, but I can't get enough.Of this everyday loveEvery afternoon I make a phone call.Listen to the voice that warms my heart.I drag myself through a few more hours..Then head on home to try and beat the dark. Her smile will be right there when I step through that door. And it will be that way tomorrow, just like everyday before. Wouldn't change one single thing about it
No, it's run-of-the-mill, still I can't live with-out it"

*I was surprised at 'Their Finest' rating that was 14A. It is enjoyable but there are two brief war scenes as well as a top frontal of a woman (which one sees approaching but seems a bit out of the proper feeling of the story) which was generally refreshing and lovely otherwise but also slightly traumatic... watch at own risk,

Lyrics to Nothing's Gonna Stop Us Now- Starship. One of my favourite songs for us.; "Looking in your eyes I see a paradise. This world that I've found is too good to be true. Standing here beside you, want so much to give you.This love in my heart that I'm feeling for you Let'em say we're crazy, I don't care about that. Put your hand in my hand baby don't ever look back. Let the world around us just fall apart. Baby we can make it if we're heart to heart And we can build this thing together, Stand this stormy weather, Nothings gonna stop us now, And if this world runs out of lovers, We'll still have each other, Nothing's gonna stop us, Nothing's gonna stop us now I'm so glad I found you, I'm not gonna lose you, Whatever it takes I will stay here with you, Take it to the good times, see it through the bad times. Whatever it takes here's what I'm gonna do Let 'em say we're crazy, what do they know
Put your arms around me baby don't ever let go. Let the world around us just fall apart. Baby we can make it if we're heart to heart And we can build this thing together. Stand this stormy weather. Nothing's gonna stop us now. And if this world runs out of lovers. We'll still have each other
Nothing's gonna stop us, Nothing's gonna stop us now Oh, all that I need is you. All that I ever need
And all that I want to do. Is hold you forever, and ever and ever And we can build this thing together
Stand this stormy weather..."

Sunday, July 2, 2017

The Many Phases of Our 'Faith' Journey- A Brief History of Moving out of the Christian Faith Slowly. Not out of Bitterness but out of Education and Growth.

Introduction: I was not going to publish this post, that has been sitting in my drafts, but my husband challenged me on it. He responded with, "That is a pretty tame and compassionately told story. Plus, it's your story. Why can't you talk about it. We get to hear about Christian perspectives and beliefs ALL the time. We generally sit politely through those we love because WE love them. Why wouldn't your friends do the same?" To which I replied, "I just don't want the very people who have supported me with my other differences like autism or physical illness, to feel I am judging them or attacking the core of their souls." To which he replied, "If they love you and know you - they know that this post is more of a quick overview directed at an internet audience. They also know how you treat them in real life and how patient, considerate and compassionate you are even when outspoken. Those who love you already know most of this stuff and those who don't know, who proclaim to love you, should maybe hear it at least once and have their own selves stretched. Post it."

*Also, I know many educated Christians, though unfortunately they are a minority or only one sphere of living at times, but so are a lot of non Christians.*

Thus, it is with great trepidation that I post this. I don't like causing hurt and I shy away from speaking about religion or politics or most hot topics because I wish for my focus to be on bettering the world, personal stories, and love. I WILL engage if I am addressing a crime or unjust circumstance against any people group but I try to let most things be fought in subtle ways. But my husband also countered that with, "Sometimes that is speaking about the hot topics for a brief moment- especially if you usually do not...not with the expectation of having others conform but to challenge conformity itself. Not wishing for those to be like you because I know you would hate that- you love your individuality- but having them know that sometimes there are stories that are also allowed to take up space and give a different perspective."

In the past, I have deleted numerous drafts about philosophy, faith, being a morally good person without faith (something most Christian doctrine and theology argue against), Spinoza, Nietzsche and other favourite philosophers, and sometimes posts about some of the ironies in many christian beliefs. Most I don't end up publishing because I realize at the end of writing, that people will still believe what they want to believe. Most people will read the research they wish to read and ignore the literature that counter balances (if it is too stretching.) It is natural to immerse oneself in the language of home and the same goes for the home of the soul. Most people (emphasis on MOST) will surround themselves with the majority of people who believe similar patterns and attend similar minded services or clubs, or social conventions that call for a bit of growth but do not stretch beyond reason.

I have realized if I am going to challenge it, I have to ask myself 'Why?" Why would I do the same that has been done to me and presume my way is the 'right way'? There are a million different ways to live a good, ethical and wonderful life. Live and let live is a mantra I try to remember. There are exceptions to this that involve circumstances where personal rights are being ignored.

Sometimes I need to write my counter balances or challenges of how I grew up or I would go INSANE. I am surrounded with a majority I do not live similar to. I have many christian friends who respect where I come from and I respect them and I am lucky to have two friends who understand my perspectives and are sometimes appalled about the small treatments, that seem ordinary to those in the faith, but damaging to those outside of it... Once I write out my strife I usually delete it because I simply needed to get the toxic mess out of my system, so that I can gracefully engage once again with those I love, who may not agree with most of my choices. Or all of my choices. This is also a lesson for me to ALWAYS read counter balancing material. Lucky for me, I spent decades in the faith I slowly grew out of, and have the counter balancing philosophies, theologies and verses constantly running in my head. I also tend to have a minority stance in most of my views on life so the counter balance is a little easier to come by, simply because I live with it surrounding me. But it's still good for me to look around at the myriads of minds stuck in a set way or box, and remind myself not to be complacent in this area.

The recent post I decided to forgo was our response to people asking to pray for or with us. I realized that I don't need to address that publicly unless someone specifically asked for me to elaborate out of a need for a game plan on that issue themselves. Plus, the conclusion was typical in that it is a contextual case by case sort of issue. I grew up constantly talking about faith, having to put everything back to god, and believing that only good came from God and no good can come from anything seemingly separated from god. I LOVED my faith and my God. My parents were considered "liberal" by most standards surrounding us, although now, are way more conservative than I am. But I liked their approach to faith. I still respect their approach by not talking about mine. It's mostly a non issue as we focus on other aspects of life which feels respectful to both sides...most of the time.

Most people assume we grew out of the faith out of bitterness or because we felt 'abandoned by god.' I remember thinking that anyone who chose not to believe in God after knowing the Bible and all the answers, was a fool or worse than wolf in sheep's clothing. I remember thinking it was pure rebellion or they must have had something horrid happen to them from one of THOSE Christians that were too strict and caused bitterness and if they only knew God/Jesus/ My Redeemer like I did, they would never have left. And then I found myself here, ironically looking back at that me, and realizing it's not like that at all, in our case at least. And I was a bit presumptuous and slightly self righteous in an innocent sort of way before to think that. In our circumstance, the journey from living and breathing christianity every day, to barely thinking upon it except when issues arise in our circles, was a slow simmer of questioning and education in one of the best times of our lives. Yup, one of THE BEST times. We had our normal struggles of course but it wasn't in reaction to anything. It was a chosen action. The reactions came LATER.

We stayed in the closet of un christianity for years. We knew how to play the game so it was easy to walk the walk on the outside. We didn't know how to be different at that point and still didn't know what life would look like, without attending church or without having support that we thought we needed, so we went through the motions while taking years to figure out how to start again. We were scared and unsure. But on the side, secretly together, my husband and I began exploring all sorts of denominations and observing the behaviour of believers in these circumstances. We went to every church surrounding us and observed the differences and similarities in both communion and hypocrisy.

The largest turning point, when we decided we wanted to be more active in pursuing another lifestyle came after we attended the "Truth Project." We gave it three sessions but it was so manipulative with fear mongering images and music. It sat wrong with us. It presented atheists as silly and picked ridiculous people for the atheistic viewpoint and solid people for the christian viewpoint. We were turned off and we were hardcore Christians, even if we had begun questioning and observing things, at that point. In that group we heard the attendees solidify each other in their own faith stances. It was supposed to be an evangelizing tool but they were simply validating each other in their own righteousness. This also began a niggling feeling in the back of our minds.

We heard them vehemently speak about an author called Brain Mclaren, which made us want to read him. We did. Looking back it was stretching for us. It does not come close to stretching us now and we find it funny how much it was. We thought we were going straight to hell sometimes. It was scary but we powered through because we needed to know. We wanted to challenge ourselves. I am grateful for the counter balancing material. Now hell isn't even a threat. If the concept of hell ends up being true, which from a doctrinal standpoint if we decided to be full fledged Christians doesn't actually fly if one is educated in the historical and ancient texts, but just for speculation sake, let's say it IS true that there is a loving God who because of his deep love, can not abide sin, so sends more than half of the world's population to hell to live in eternal burning torture...Even if this was true, we would rather choose to live how we are living now and choose ethically wise and non judgmental, open lives, and risk that chance. I no longer live in the fear I used to live. I would have even be afraid of reading an article like this. I was afraid for my friend's souls. This 'loving' doctrine ruled my life and I thought it was so grace filled. I also used to be the one who emphatically believed this was a doctrine of love. I wept for friends who did not share my beliefs.

Let me state, I understand, because of my history, how this belief system is sacred to the heart of one who believes. I have letters I wrote to my Father in Heaven. I have poems from an early age and into my twenties that are beautifully heartfelt in love for my Divine maker. My life WAS my spirituality and in a way it still IS, but has morphed into something else entirely. Previously, I would say phrases like, "I'm spiritual not religious." or "My form of Christianity is a lifestyle not a belief system." or "I love Jesus, and Jesus is not his followers, who may give it a bad name. You don't need to give Christianity a chance but give Jesus one..." I went from liberalized believer, to fundamentalist and partially Calvinistic for the first few years of meeting my husband. He was strict at first and I followed but it never sat well with me. Then we were Charismatic for awhile, Emergent and an Anam Cara sort of Irish Christianity and lastly Anglican/ Catholic. In all phases, we believed we were thirsting after God and had the right way...Until we became educated in more. I understand DEEPLY the need for faith and also the safety and love factor of such faith, but I do not share the sentiment anymore. I empathize and wish to be considerate about the beliefs involved but I do not hold myself to the same guidelines. I can see the merit without coming back to the 'heart of worship.' I also firmly believe that Christianity has a lot to give to the world and I am thankful for it's large part in my life. It IS a part of me and always will be, in both good and bad ways. I also think Jesus is a solid example...He's right up there with Ghandi and Mother Teresa or even heroes of fictional literature as well, for being an advocate for love, justice and bringing into awareness stories of morality.

The reason why Brian Mclaren ended up staying in our library was because we saw a response in him we were not seeing in most of the people around us, when it actually came down to the daily gritty aspects of accepting others. It was compassion. His words were healing and directed towards loving all people. His message seemed more on track to a Jesus we wished to know. We preferred reading him to hearing fear mongering, manipulative threats, and veiled insults to 'ignorant sinners who were not of THE way.' Or even random ignorant comments about minority groups or other's who were of differing denominations in the faith ( and the petty fights over scriptural differences), or the blatant hate towards LGBT peoples or Pro choice advocates. When it came down to it, people could never really go further into the why's and how's of the deeper issues and that bothered us. After Brian, we started to read Joan Chittister, a catholic nun who wrote beautiful books about living out the daily in a Benedictine sort of way. We still keep her books in our library too, even though it differs from current stances in some ways, we still learn and have grown from her literature. Naturally after that we hesitantly read some Buddhist material and branched out from there to other Religions and Non religious stances. We delved into morally sound Atheists and then to actual History which wasn't washed out in a winning Christian perspective. I realized my education purposefully left out certain people, philosophers, sociologists, psychologists and basic science. THAT is when we went through our angry stage. It came as a direct result of the injustice of one perspective being forced on every facet of our life BEING during our development. Even in a liberal, loving way. We felt we should have had differing perspectives to either test our faith or give us choice within our faith. Surrounded by the same beliefs, in the same people, in church, school, weekend life and extra curriculars were similar to a cult upbringing. Eventually we had to make peace with this too, but it was a legitimate phase. Sometimes this anger is still triggered if we are met with a particularly bigoted, prejudice or self righteous christian thought. I know many Christians who also feel the same in this's not exclusive to a non christian standpoint.

On the flip side, Christianity has many interesting moral and ethical teachings to consider. Many good people have chosen Christianity as their religion. Just like many have chosen to be Atheists or any number of other belief systems. As a whole, it is worthy of study. We expose our children to the Bible just like we do to Greek myths or other Historical and Sociological texts that have shaped the culture of humanity. There are some great stories to consider. We are not anti christian. We are anti closed mindedness and judgment in the name of any religion. Since we grew up in Evangelical Christianity for myself and Missions orientated Christianity for my husband, we will focus more on what we know. That is natural. We will also find little ways to counter balance the communities we find ourselves in. We often will empathize with the libertines and so called rebels simply because we know what it is like to be labelled as such. We are also anti "only a belief in god can redeem a person or make them worthy of knowing or belonging." This feels soul destroying on so many levels, in the name of being soul building.

Most of my friends are varied forms of Christian. Some are Atheists, a few are other religions and one is more like me (which is impossible to explain and is more for one on one conversations with deep trust bonds.) If I had to pick a soul twin philosopher in this regard it would be Baruch Spinoza and you can learn a bit more at an easier level about that HERE.  Listen to Podcast 164 and 165 of the Partially Examined Life for more. HERE. Most of my christian friends have ethics similar to mine. Most are kind, compassionate and non judgmental...and when they are judgmental they are mostly unaware of how they are coming across to anyone outside the faith simply out of innocence of never living that way themselves. That is the reason I bought the plaque in my house years ago that says, "Grace to Accept." Ironically it was to accept the phrases said in a benign way to me, in my own home, that were somewhat unthoughtful, inconsiderate or demeaning. Phrases, that are well intentioned but condescending. I had to realize most were spoken from a deep well of concern and love. I also had to learn that sometimes well intentioned can be challenged, depending on the relationship...and that many atrocities in our human past were "well intentioned." I'm sure many call to mind phases in history where "well intentioned or righteous thought" subjugated, destroyed or shunned people who were different. It was "well intentioned" for the benefit of all. It's akin to the the segregation issue currently in Australia where there is talk of wanting to separate Autistic children to a different classroom to "improve education for both Autistics and Nuerotypicals" (CLICK HERE for more.) There are times these need to be gently or firmly addressed for our culture to grow and benefit all.

Our 'faith' journey will continue to morph and grow or change until we die. It is often natural for those who have gone out of their faith of childhood to go back when they need comfort. It's basic brain science. Akin to going back to our mothers when we need nurturing in adulthood if they provided nurturing when we were young. If that happens, so be it. I am unconcerned about coming across wishy washy. I believe life happens and we can not predict how we will respond in the future. Growing up christian there were some very safe and nurturing aspects. But it was also abusive and unjust in some circumstances. And oh so ironic to be told you can't watch secular shows like Sesame Street that teach about sharing and kindness because of a speculated difference in sexual orientation in some of the characters, but yet the same child can go to church that Sunday, and is required to attend Sunday School, where on the flannel graph there was a lovely depiction of a heroine driving a stake into a man's head, shows of adultery, or the story of a bag of the tips of a man's anatomy held up in victory. The irony is fine as long as it is acknowledged but too often it was asked of us to blindly accept it without question. In the end, I suppose that is what we "rebelled against."

It was also a confusing and heart wrenching few years, that I would not recommend for most people...especially if they are fragile. It almost broke us to be a minority in EVERYTHING in our close circles until we built a few new ones and kept some of the old ones. It was truly horrific at some points and contradictory was like going through addictions therapy to an addict...there was a phase that made us literally sick because of how hard it was leaving behind the safety of what we knew and challenging it at such an opposite level. It was NOT easy. It took bravery and guts. It also took us fusing together which is why we took the journey together. IF we did not take it together we would have divorced, as it is that kind of difference that would not easily work in a marriage otherwise. We are lucky we at least had each other.

We still stand up to certain circumstances where it is asked of us or our children to blindly go along, singing songs or praying prayers that are not aligned with our souls in the first place. We would not ask most believers to sing, "Highway to Hell" or any Eminem song (though I did when I was a Christian! ha.) But most would feel that those songs did not portray their inner core and would refuse. So why would we sing songs about praising the lord, giver of man? Our inner core's should not be ignored or trampled on and this directly disregards our freedom. Which is worth fighting for even if it is meant to be harmless or unthinking. We respect faiths. In our home we allow for anyone of any faith to do their own blessing before a meal but we will dig in quietly in the meanwhile. In another's home we will sit through their traditions whether it's prayer or an Irish blessing or a Wiccan ritual. As long as it's not about harming others. We draw the line at abuse, cruelty, and crime.

But the general concept of love within any stance or belief system? Our youth in Christianity has served us well in those aspects and translated into other area's of life. I'm not bitter about it. I am exceedingly grateful for most of it. Our world has both good and bad and each situation has a bit of both...even the one we are consciously choosing right now has some downsides and some good sides.

I suppose in a way this post is "My fight Song" in the sense that I haven't said many of these aspects of my life. This is my fight song in the fact that I AM strong in what I am, and I don't care what anyone else believes, because I am HAPPY in my stances. I have read more than a library full of arguments, philosophy, theology...heck I was even in a dissecting and arguing bible text class for a semester in Bible school.  Plus, I attended a Christian School from k- 12. I had the ENTIRE Bible memorized at the end. It was my favourite class. I studied on the side. I was one of those kids...I know both sides and can argue for BOTH. I played on that chess board. I have no intention of going back, at this point, as my personal freedom has turned for the good. I am happier now than I ever was, in the way I believe and the rest of life. We have our issues of course but I have never lived my life in more love and less fear than I do today. Which I know is hard for people to hear. I also would like to emphasis, that I TRULY do not believe this path is for everyone.

I want my Christian friends to stay christian if they are loving versions. I want them to be challenged sometimes but I don't wish for them to be carbon copies of me. I believe the world NEEDS many different stances to be balanced. I also believe that we all handle life differently and need different thoughts to be healthy. I have one friend in particular, whom I am thinking of right now, who is the most innocent, sweetest conservative christian. She reminds me of how I was but without my INFJ personality. In fact, she is a Guardian, which means that it would be almost impossible for her to take the journey I did. She is not Intuitive and more Sensory based and in need of a concrete belief system. She lives her life beautifully. I admire her and would NEVER want to change her. So when she brings up faith issues, I try to cause the least damage by smiling and changing the subject or listening and maybe giving some of my differing thoughts on a matter like LGBT life, but not too stretching and not in a pushy way. Because I know she has no intent to harm. She is truly living out her best life. She is beautiful and I do not want to destroy her with information she may not be able to handle. Searching is not for everyone. Just like adventuring is not for everyone. My adventures are of the imagination, soul and mind. But some people like to travel the world. That would destroy me at my very core. So I don't stretch much in this area. Sometimes I try little ways of challenging myself, but I know my limits. Those who love me do not push for me to travel either. This is how I approach faith in others. If I see their personality, how they are in the world, and what they can handle is not at my level of exploration, I drop it. Each circumstance and relationship is different. My approach is not one size fits all. My husband has a bit of a different swing on this and his ENFP personality is more of a pot stirrer. Which the world also needs. I like to meet people where they are at or not at all. I also like peace but if I get unjust actions against those or whom I love, I WILL be a spitfire.

Years ago, we had to FIGHT just to be our version of ourselves. When we walked out of church all hell exploded in a sense. I had anonymous phone calls. I had men calling me and telling me what a harlot I was and how I was misleading my husband and like a wolf leading sheep to the slaughter, I was causing damage and was taking my husband down to hell with me. Yup, I am not exaggerating that one but it was from a fanatic few. Other versions of this were more subtle but with a similar, yet "kinder" approach to the same message. Over a few years we were constantly challenged, called on our personal decisions, and asked to comply. So yes, we did fight back. In small ways and big ways.

Once it mostly blew over, I begged my husband to go off the grid with me. And for the most part we did. I think most people still assume we are a different version of Christian. We like those assumptions if it means peace. We will still occasionally write upon our experiences- it is our story after all. We will fight for our freedoms and our children's. We will ask for perspective and empathy or support from those closest to us. But for the rest of the time? We wish to live in peace. We could argue on many issues because we are actually VERY educated in most stances, beliefs and other aspects of being. For more on this I would just ask you to read my library links and listen to the podcasts and come to your own conclusions. I don't wish to waste my time on arguments. I have been there. Done that. I also have a horrible memory so while I have incorporated most of these readings into my Being I wouldn't be able to talk about them much. My husband can and is willing sometimes but he is a different person. I will only fight when it comes to feeling abused on any level or sticking up for the outcasts or those who are getting an unjust end of the deal, due to people not thinking. We wish to love actively in the ways we can, live passionately and also quietly... We have a fight song. We also have a peace song. But because this post is addressing sentiments I usually prefer not to speak upon too much, I feel that leaving Rachel Patton's song for those who judge us, is perfect. I will also leave Lennon's 'Imagine' and Ozzy Obsourne's 'Dreamer' for those who have peacefully co existed alongside of us. Words are not enough to express my thanks to those who consider, still choose a different path, but respect ours.

If you want to find resources that aid in a journey, read or listen to the links in my library. I would especially recommend the podcasts "A partially examined Life" as well as "Reasonable Doubts", 'Heritage Podcasts' and 'Crash Course.' Click HERE for more and all the links.

Song choices: Fight song- Rachel Platton (CLICK), Dreamer- Ozzy Osbourne CLICK, Imagine - John Lennon (CLICK)
Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me
Losing friends and I'm chasing sleep
Everybody's worried about me
In too deep
Say I'm in too deep (in too deep)
And it's been two years I miss my home
But there's a fire burning in my bones
Still believe
Yeah, I still believe
And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me
A lot of fight left in me
Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong (I'll be strong)
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me
Know I've still got a lot of fight left in me

Songwriters: Dave Bassett / Rachel Platten

Friday, June 30, 2017

About Canada/ Don't Stop Thinking About Tomorrow/ "All I want to do is to see you Smile, If it takes Just a Little While."/ Fleetwood Mac Lessons/Brilliance and Beauty in the Midst of Dramatic Life.

Fleetwood Mac's Rumours album is one I listen to any time my life feels overwhelming or dramatic. There are so many songs that are applicable to daily drama, probably because of the story behind the album, but the band was brilliant to start with.

Yesterday, my daughter forced me to watch Glee. She said that the episode, "Born this Way" was just what I needed. Turns out she was right. Glee has always expressed my soul. I go to certain episodes when I feel or need certain insights, inspiration, song love or friendship. "Born this Way" had me celebrating whom I was once again and taking back baby steps towards feeling good about myself. I Gaga'd up my game.

This morning we watched the follow up episode, "Rumours." The first time I watched Glee Rumours I was reminded of the Fleetwood album that I had not listened to in years. I downloaded all the original songs except the last two because for some reason, they don't speak to me. But the rest of the songs?  To say they were on repeat for weeks, is probably an understatement. It was the soundtrack to my life for a full spring and summer. It was when I was officially diagnosed with Autism and I had many conflicting emotions. I need these songs when I am feeling conflict. Critic Patrick McKay wrote, "What distinguishes Rumours —what makes it art—is the contradiction between its cheerful surface and its anguished heart. Here is a radio-friendly record about anger, recrimination, and loss." I love that polar opposite, raw, brilliant way of expression. Within those complex paradoxes, there is also optimism.

"If you wake up and don't want to smile, if it takes just a little while, Open your eyes, Look at the day, You'll see things in a different way. Don't stop thinking about tomorrow. Don't stop. It will still be here. It will be here better than before. Yesterday's gone. Yesterday's gone. Try to think about times to come, and not about the things that you have done, if your luck was bad to you, just think of what tomorrow will do. Don't stop thinking about tomorrow. Don't stop. It will soon be here. It will be here better than before. Yesterday's gone. Yesterday's gone. All I want is to see you smile, if it takes just a little while. I know you don't believe that it's true. I never meant any harm to you. Don't stop...It will be here better than before. Yesterday's gone..."

Tomorrow is Canada's 150th which has had me reflecting about the beauty and abundance I live within. In any country, there are troubles and issues, but with the focus on celebration, I have chosen to look at the positive. It's a bit easy for me because I adore Canada. From cheesy misconceptions of Igloo homes doting our vast landscape to the overused "Eh" or the symbols of Moose/ Beavers/ or the Canadian Goose to the more subtle beauties of a country young. The book How to be Canadian- Ferguson and Ferguson (CLICK) is a fun, sassy read on Canadiana.

This anniversary IS literally my tomorrow. But how does it apply to the larger picture of my life's landscape? The landscape of Canada is diverse, just like it's people. I love how a person could get lost in our country. I only have to travel two hours in each direction for a different landscape. Perspective is continually challenged and changed based on weather and geography. I wrote HERE (CLICK) , "The North has a way of giving and taking so suddenly. I believe this gives the many inhabitants a live or die mentality of savouring quick goodness and seizing unexpected moments quickly. Also installing resilience in those that manage to change with the seasons, or heck, the day to day...I am a 'Northern girl, wild and free with four strong winds to carry me'- Terri Clark...It's in me and I am in it. This is who I am and although I may complain at times, and it brings it's share of pain, it also brings great depth, freedom, raw strength and beauty. True, North, Strong and Free."

Canada calls for resilience. It also, in it's hopeful state, calls for compassion. Currently, there is drama heightened all over the globe. Pretty much everyone I know is struggling. There are horrendous stories in the news every day which is why I don't read the news. I choose to focus on only the issues surrounding me because it is there that I can make the most difference. Little ripples spread over the globe, if we all are the change we wish to see in the world, in our small parts of love and awareness. I am aware of the atrocities committed when I mention my daily issues, but I don't let these deeds overshadow my own pain either. That would mean I would be allowing the troubles of others to excuse my opportunity for growth. To say, "They have it worse than I do" is to neglect the soul work of actually addressing my own issues for a better world. It's a little lazy and wrong because anyone could say it to a degree. So, my own ideas are to process, allow the emotions, become the struggle and move through it with growth and sometimes even a bit of stagnancy. Sometimes we can only show up. Sometimes growth is not existent and out of seemingly nowhere a bud will bloom.

Yesterday is gone. Yesterday taught me something. There are pieces I will take with me on my journey, but it's also important to hold out for tomorrow. Even savour or get through today. It may sound selfish, but when I hear the lyrics that sing, "All I want to do is see you smile, if it takes just a little while..." I am actually singing to myself. I am being the friend to myself I would want someone to be for me. I have done this trick since when I was little and felt no one understood me. I became my best friend. Like Anne having a mirror friend, except my friend was a part of me. I felt that I had to be own hero and wait on no one to rescue me. Not even God, even though I believed in a conservative view of 'him' at the time. I thought even with my beliefs on redemption, that it was unfair to ask someone to come rescue me in my daily deeds. It was important to hope for rescue in certain circumstances, but it did not excuse my responsibility to make as much change for myself as I could. I still hold to that stance. When I forget it, I tend to do poorly in life. When I remember to be the friend and hero to myself that I would like, I am less of a burden on society, but I am also strangely more aided by society too. I begin to see 'help' in the strangest of places. Like Dumbledore says, "Help is always available at Hogwarts to those who ask for it." or "Happiness can be found in the darkest of places if one only remembers to turn on the light."

*DISCLAIMER: I have been depressed. I feel this does not apply to depression or circumstances when one requires help. There are times when I can not even help myself. Luckily, most of them have been shorter but some were years of just getting through and that was enough of an accomplishment. I am NOT saying 'suck it up princess.' My dad used to always use the phrase from Nietzsche that is often misquoted, "What doesn't kill you makes you stronger" and I HATED IT. I love Nietzsche but that quote is not in context plus it's untrue. Not all things make one stronger. They can in some regards, but some things do WEAKEN the body or the spirit...forever. Acknowledging this is the first step to freedom. Plus, it helps no one in a state of brokenness to hear this. Thus, I am not encouraging my readers to take full responsibility for everything that happens to them. I believe in healing and therapy. What I am saying, is if you can, in the little things, it is good to try to turn on a light for yourself, if you can.*

What I am doing is asking myself to help. Then I can ask others if I really can not do it. Sometimes we receive not because we ask not. A little Jesus tip that does apply in life. We need to ask because people can't read our minds and the worst they can say is a kind NO and then we find someone else or ourselves...I am also simply remembering to turn on the light. Sometimes, the task of turning on a light, is forcing myself to put on a song even though I don't feel like it, that suits my mood. This can be work and usually I pessimistically think it won't help, but when I actually take the time to find the right song, it can sometimes turn my day around. Other lights are time spent in nature, a favourite show to watch even though others would deem it a waste of time (45 minutes to change a day? WHY NOT?!), taking extra time on make up, sitting on the deck and soaking up the sun in gratitude, steeping tea, nourishing the body, walking, hugging my children, focusing on what is good, asking myself the hard questions and coming up with a few applicable solutions, changing my inner attitude, making a change for someone for good, indulging in art, decorating...the list goes on.

Turning on the light for oneself does not mean the drama ends. It does not mean that suddenly I am physically out of pain, don't have Lyme, Anemia or Mono right now, or that I do not have struggles with Z.  It does not mean my husband and I are automatically recovered from our roller coaster year. It does not mean my children will always have good health. At the Dentist the other day, they refused to work on my daughter because they said she had Autoimmune sores in her mouth and on her tonsils. I remembered to mention Mono. They said she was having a regression and it would be dangerous to work on her. No wonder we were both getting headaches, sore throats and exhaustion again! We were still sharing drinks because we thought we were both over it plus we both had it anyway, and didn't realize we COULD get it again. Most sites say that one can not but the forums are another matter. Plus the Dentist insisted we could. So that also threw another curve into my summer, I wish I didn't have to deal with, on my table. I am truthfully, barely making it through each day, even when I get a good sleep, because of severe exhaustion on so many physical and mental levels. But shit happens.

When I tell myself, "All I want to do is to see you smile...if it takes just a little while..." I then ask myself, "What would that take? What would I wish for someone to do for me?" And I try to make it happen. Once I smile, I then realize, that it is time to share that sentiment with at least ONE other person. Be their smile. For myself, that usually involves giving into my quirkier side with those I love. It's fairly easy with them. With strangers, it takes more.

Today Fleetwood Mac will be going on the stereo as I clean my house. I will make sure we get outside at least once even though I feel awful. I will also find a way to celebrate Canada in small ways this weekend. I am determined to be a True, Northern girl, strong and free, in the ways I can be. This is my tomorrow. It's not promised and it may not even be feasible when the moment arrives, but it's a mindset for today. Because it matters to hold on to something that makes us believe in the good of all. Whether that entails god or some other form of hope or goodness. Hope can damage too in some ways, so the hope should not be the only aspect to get one through, but it is an important piece sometimes. What should be present always is a sense of gratitude, perspective or support. "It does not do well to dream Harry and forget to live."-Another Dumbledore, J.K Rowling bit of brilliance. Hope sometimes is a dream that stops us from living now. Remember to live. DON'T STOP living in love until your end is nigh.

All I want to do is to see you smile...if it takes just a little while...

Post Edit: AFTER I wrote this post I was listening to the radio and another favourite came on that really applies to this post: "If you don't like what you got - Why don't you change it, If your world is all screwed up Rearrange it. Raise a little Hell, raise a little Hell, raise a little Hell
Raise a little Hell, raise a little Hell, raise a little Hell. If you don't like what you see, Why don't you fight it? If you know there's something wrong, Why don't you right it? Raise a little Hell, raise a little Hell, raise a little Hell. Raise a little Hell, raise a little Hell, raise a little Hell. In the end it comes down to your thinking, And there's really nobody to blame. When it feels like your ship is sinking
And you're too tired to play the game. Nobody's going to help you. You've just got to stand up alone
And dig in your heels, And see how it feels, To raise a little Hell of your own. Raise a little Hell, raise a little Hell, raise a little Hell. Raise a little Hell, raise a little Hell, raise a little Hell If you don't like
What you got, Why don't you change it? If your world is all screwed up. Rearrange it.  Raise a little Hell, raise a little Hell, raise a little Hell"- Trooper 

Song choice: Fleetwood Mac Don't Stop (CLICK):

Northern Girl- Terri Clark HERE :

Never Going Back again- Fleetwood Mac ( HERE);

Also, this is so beautiful. The sun will come out tomorrow- Idina Menzel CLICK. Another song I belted out in my youth: