Limited: When Thriving Isn’t an Option. Low Ferritin And Spirituality And Meaning.

How do you deal with limitations? The kind that are not surmountable or conquerable? When solutions fail and conventional methods have devastating effects? How do you feel about the phrase, “I want to thrive not just survive”? How does a person with limitations of any kind learn to live a life of meaning and inspiration? Can limitations be a blessing in disguise? Are they somehow redeemable or do they just suck? Can it be a both / and situation? 

I’m limited in many ways. However, there is one limitation that affects other limitations. It is a ‘trickle effect limitation’ that stems into other categories like weight gain, depression, self esteem, anxiety, energy and a general knowing that I can’t do the things I generally want to do as a “go getter.” I’ve written about this before. Multiple times. I’ve come to terms and peace with it - and then cycled around to grappling and trying to control it. I have often viewed my consistent low ferritin as the proverbial thorn in my side or Achilles heel of autoimmune disease symptoms. I have other long term diagnosis to deal with, but it’s this one, that gets me down the most. Because I’m at a catch 22. I’m allergic to the solutions and had a life threatening experience the last time I went under anesthesia. So I am quite literally stuck. Which means, when there is not much a body can do about an existing condition, there has to be some sort of understanding to ease the burden, a process of both grieving and acceptance (over and over again) and a general support system. 

I have found personal Forums and Reddit to be that place for me. Most doctors don’t get how it feels. It takes a fellow sufferer to understand. Thus, I’m including some pictures of Reddit forums below this post but I’ll summarize them. To put my situation into perspective- currently my Ferritin is at a 1, and my hemoglobin at an 8.3 ( in Canada 83.) It was slightly higher before, but my regular cycles completely wipe me out each month. I can usually guess when I’m up or down a point or two from my latest bloodwork. There are times each month when I drop off the face of the earth and stay around my bed. I can’t even have people over to watch shows during this phase.(Conventional medicine is out of the question for my body - believe me- I have tried all the solutions I can, as I have been severely anemic since the age of thirteen. I have also suffered some extreme trauma in medical situations I’m still not over.)

On Reddit, there are many forums for my symptoms but one of my favourite feeds was titled, “How many of us are actually bedridden?” Another was, “Do you constantly feel like you’re slowly dying?” The general consensus is that all these sufferers feel “lazy” and like even folding laundry is exhausting. That’s relatable. For myself, my heart goes through the roof when I pick up my cat or climb the stairs. My children usually bring the cat to me. To an outsider, it looks like my family waits on me a lot - which they do. Our rhythms and normal life look like I’m a total Princess (which admit-tingly, I kind of am sometimes. I’m so lucky they get it mostly.)

(This bookmark cracked me up.)

I’ve dealt with this for so long I know the tricks to look “healthy.” In fact, I’ve been told by doctors there is NO way I have what I have - and then they look at my bloodwork and they are astounded by the facts staring them in the face. The most common comment is, “You look so healthy and energetic! People at your levels are usually bedridden or hospitalized.” One of my more astute Doctors looked at me and stated, “I bet after this appointment you go home and lay down to recover for a couple hours.” Yup. I also wear bronzer to make my previously olive skin tone (which is generally a sickly pallor now) shine through. To me it’s not fake- it’s what it would be if I was healthy. I wear hair extensions when my hair falls out (which it does in cycles.) I cover my nails when they start yellowing or are white due to lack of oxygen. I wear three layers of eye concealer and sparkles to cover or deflect from my dark circles that could often rival Franklin Rosevelt’s. I use silly words to cover the fact that my memory loss is showing up at the moment. There are MANY other tricks I do to look as healthy as I can- I mean, dignity brings a certain level of humaness. I’m also naturally a go getter and high energy person, who can be extremely disciplined at bringing the energy game to life, even while feeling like I’m dying. Some people feel this is fake but it’s not. It’s me trying to live my best life despite my reality when possible. I’m genuinely interested in most people and I want to bring kindness and energy to the conversation. I dislike explaining or being a victim. I also dislike the judgments or the well intentioned solutions (but that is my pride speaking there.)

But the evidence is in the pictures below. I’m not alone. It does sometimes feel like I’m dying slowly. Ordinary tasks sometimes have me gasping for air. Movies with friends are my best way to get quality time while still “fitting in” because I don’t have to exert myself. It looks lazy often: it’s a coping mechanism that enables me to still feel like I have a life. I attract high energy people sometimes, but then I get left behind. I pick and choose events based on timelines where I can feel I can bring it! I pay heavily for some events but that’s the cost I’m willing to pay if I’m there generally. Sometimes I need better plans. Recently we spent a family gathering outside our home for 8 hours and that amount of sitting without laying down for my heart with lack of oxygen had me quite sick afterwards. It’s taken days around my bed or couch to recover. Next time I may have to count the cost and decide on a better plan. My family doesn’t love leaving me alone to go do the things either. They generally understand how painful my limitations are and lucky for me - they like to include me. They try to include me on what I feel I can handle. Sometimes they restrain me from myself. I take on more than what I can chew often because I WANT to be ABLE. 

Which brings us full circle to my original questions. 

Thriving is a privilege. Surviving is too actually. On many days I’m just grateful I’m alive to this precious life. I know I’d be dead if I’m ever in any situation where I bleed at a normal level ( any accident really.) I read a lot of WW2 stuff and I know I’d be the first to go. My family knows this too. I’m weak but I don’t want to be. I try to be strong for the level of weak I am - if that makes sense? It’s another reason why Elphaba singing to Galinda in Wicked “I’m limited… and look at you- you could do all I couldn’t do…” gets me every time. There are things I have to pass the torch on to someone else who will be inspired by me to do it. I won’t get the credit unless it’s a rare and lovely exception. I won’t be SEEN by anyone other than God. I can even look like the bad guy. I may be the one to start a movement but honestly, I’d rather be the one to finish. That’s not the case most of the time. I long to be active and beautiful. To shed the extra weight I have literally and figuratively, and run in the fields with abandon. I struggle with “normal person envy.” There is so much to unpack regularly. 

YET, there is a silver lining. Limitations? In faith, they are what points me to something Greater. I’m consistently running to the One Whom is Stronger and Understands (OK yes, I also run to Google often too which just makes my anxiety worse.) My meaning is not often based on the world’s standards of “get it done!/ be capable!/ live your dreams!/ be all that you can be!” Nor the Christian version of that either (I’m living in that context) which looks often like “be the greatest example!/ be a constant witness!/ change the world!/ bear fruit!/ find your purpose!/ do great things for God!/ you were meant for more than the ordinary!” 

The last phrase is true to a degree - we were made for more than the ordinary - because we were made for a Creator who loves and has more for us. Yet, that doesn’t translate to performance. My situation is redeemable when I reframe it in the kingdom upside down. When I see that the sum of my life is contained mostly to my house but also to the people I have IN that home… when I’ve given hours of my time in discussion to someone who is struggling - and then they get to go live life - and I’m mostly stuck to my couch/ bed or deck… I have a perspective choice. I get to ask myself, “What truly matters on my death bed? What matters to the heart of God? How did Jesus spend most of his ministry?” The answers are swift and like a healing balm. I’m not Jesus but I love that model of spending a life talking, taking the time with other outcasts or people who are sick, and don’t feel like they fit or need respite.

 I’m not God. My limitations often stop me from being my own type of god. It can be deceptive - being able to do all the things. When the ability is taken away what is left ? 

My husband stated to me last night when I was reading Reddit feeds to him, “ Honey, the only reason we often forget you are quite sick or limited is because you forget. You are so good at pretending to be normal, pushing through and not spending all day in your bed even when you are craving to, and disciplining yourself to present a certain way, that we are even fooled. By You! Sometimes you have to be the one to realize your limitations. I know you know but sometimes it doesn’t translate to action. We also want to respect when you want to and CAN do something or choose to take the cost- so you have to set the tone.” 

Easier said than done. I don’t want to be the person who is continually pointing out how limited I am. I don’t wish to be a martyr or a victim. I also don’t wish to de value the life I’ve been given or the limits I’m responsible for. For better or worse this IS my reality. God knows what is possible and what I’m responsible for- in that I can rest. Daily I run through my gratitude list. Topping it is my family that has SEEN my struggles and successes and whom still deeply love me. They truly do treat me like a precious human. They help me physically and respect my help mentally, emotionally and spiritually. I’m in an optimal position for what I deal with. Being out in the world isn’t easy but inside my home - I have it good. Which is what I try to share with the people God gives me in my realms. My prayer is often “Send the people you want me to share my haven or words with and help me to lean on God when they are ready and able to go. Show me the people you want me to send books to or share with - as it’s something I can do.” 

These limitations can sometimes be absolutely awful. There’s so much I do want to do. I am human after all. There is so much I grapple with. I want to be at a weight I enjoy. I want to be able to do all the things. I want to be able to work out heavily and have the energy to go on long walks because they are beautiful. There are so many things I want to do that I can’t. I dislike explaining it to a lot of people or new friends and I just try to get around it to seem as normal as possible for the most part. Unless they actually read my long blogs - ha! But the longer they spend with me, the more they will know that something is not quite normal. (Ha this doesn’t even count the Autism factor or my other differences!) 

One aspect of life I tend to get right often, is the love of the Creator. I know without a doubt how very loved I am by the One Whom Is because of my limitations- which cuts through the bullshit of life and goes straight to the spiritual heart. I know I am that bleeding woman in the Bible. And I know that the hem of His garment is enough. Even if it doesn’t translate to full healing physically - it does translate to full healing spiritually often. I know where my meaning lies, even if I get it mixed up often. It’s easier for me to live in the Kingdom Upside Down because of these limitations and that is something… I suppose. Once again, it’s BOTH/AND.

Do I want to thrive not just survive? Absolutely! Is it my reality? No, although sometimes Grace gives me seasons or moments of thriving. That taste is bittersweet. But that’s ok, because stories of survival can be inspiring. I know that the person who is more disabled than I - bedridden and incoherent - is still incredibly precious to God and life. As long as they are still breathing they are WORTHY to exist. Their survival means something on this plain of existence. That humbles me. 

Song choice: This song is a song from the nineties (laughable so with its beats;) but I love the lyrics. I sing them often in my upside down world. Kingdom Upside Down - Morgan Cryer : https://m.youtube.com/watch?v=RNwtwMUMGVM 

Also Dance the Night Away from Barbie seems appropriate: https://m.youtube.com/watch?v=dAwLMS8fgoA

(click on photo to see the words.)

The 'Wicked' Movie- A FULL CIRCLE Moment

* There are no spoilers for the movie unless you know nothing about the original broadway play.*

The first time I heard this song Defying Gravity in 2005 my heart beat wildly. My aunt had sent me a fuzzy Broadway bootleg clip of Idina and Kristin. She stated, "I think this will be up your alley." Little did she know that she would fuel an obsession that would take me through the next twenty years of my life. I watched Defying Gravity and the emotions thrumming in my chest sang, "This is it. This is the song I have always been looking for!" The untold story of the Wizard of Oz through the Broadway Play Wicked hit my heart in a very personal way. While I loved the bubbly character of Glinda, it was Elphaba, the seemingly wicked, whom I could strongly relate to. I found pirated versions online of Idina Menzel playing Elphaba and Kristin Chenoweth as Glinda. (In those days there wasn't streamlined social media nor the clips we have today. It took hours of searching and I also did not have any Broadway friends. I was alone in my Broadway obsession's at the time.) 

I bought the full soundtrack on Itunes and listened to it over and over again. I had to guess the storyline from the songs until mainstream media finally had more accessible information on the entire play. I ordered Broadway merch online from Ebay. Anytime I saw the word "Wicked" on anything Halloween I would buy it. My husband has the soundtrack memorized from the multiple times I played it to the city and back. Also, whenever I was upset (which was a lot in those days) I also played it. I fell in love...my only other prior loves coming close to that level in media were Gene Kelly dancing in the rain and Judy Garland singing in any movie, but Judy especially singing Over the Rainbow in the Wizard of Oz. The first screenplay I wrote at age eight was a knock off of the Wizard of Oz in which I forced the neighborhood children to practice and perform for our parents. Of course I was director and Galinda the Good witch swirling in a pink dress and feeling like the world was an amazing place. ( I was a bit of a diva I’m told. In my twenties I got a lot of flack for it so I mercilessly squelched that side of my persona.) But truthfully, I wanted to be Judy Garland until I read her biography at age ten. I was five when I cried for hours over the shortness of life. I cried for my teddy because he didn't have a soul. I sobbed for Judy Garland because she was no longer alive. It was my first metaphysical crises. I don't know what brought it on exactly. I think the main trigger was that I had just finished watching Meet Me in St. Louis with my mom and she happened to mention that all the people in the movie were dead. Maybe, she thought, that being only five, this fact would breeze over my head. Instead it breezed into my brain and remained there forever. The truth of time was already hammering its rules into my subconscious. 

Each year I would google Wicked movie remake rumours, hoping my favourite original Broadway gals Kristin and Idina, would be included. Fast forward to this year of 2024, the night before my movie attendance, and I woke to nightmares of hating the movie. I was nervous and dreading it more than I was excited about it. Would they ruin it for me forever? Would the obsession that calmed me during my post baby blues of my third child, carried me through my Autism diagnosis at a time when barely anyone was discussing Asperger's Syndrome/ Autism, and brought me through lonely hours of washing dishes as a mother of three belting out the soundtrack over and over again, be irrevocably ruined forever by this movie?

From the moment the opening started, I was left breathless. The dashing Jonathan Bailey Dancing Through Life completely crushed any lingering whispers of doubt. He may have surpassed Gene Kelly for me (in that moment) which is saying A LOT. The movie did not feel like 3 hours - I could have stayed longer (which anyone who knows me would be surprised at, because I constantly check the time at theatres as I tend to have panic attacks in them.) I am eager about part two. It also helped, that a journey that began as an isolated obsession, was shared with a van full of 6 theatre gals, whom belted out the showtunes from the original the entire way there, playing with harmonies and expressions of each character. We even dressed up together, which I did often as a Witch from 2005 onward, but in a conservative town, the word Wicked was often just chalked up to the evils of humanity (along with most witchy things until Harry Potter movies created a happy mainstream beauty to that witchy wonder.) I can not count how many times I was asked why I had that word 'Wicked' all over my house or what my obsession with witches meant, or the meaning of the lyrics to Defying Gravity that were a decal on my library wall. Which is understandable when it is out of context, but I would get so excited when the odd person would know what it was or be open to hearing ALL about it. To come to a place in societal time when dressing up in costume is barely a blip on people's radars (or gets the full compliments) and Wicked is one of the most searched news currently, it feels like a full circle moment. 

A couple years ago, when we did our renovations, I gave most of my Wicked stuff to my daughter. I was trying to be more grown up. I was trying to fit more into my town. Maybe if I had less Wicked words around my home, the church people groups would host more events at our home? I noticed that while people raved about our family and our home, when we offered to host official churchy things, it was gently rebuffed even though our home is set up to entertain and host. Luckily, we are still massive hosts in the community to those who may not fit, and those who love to be a part of our family existence. But at the time of getting rid of stuff, I thought that maybe people would be less scared of me? Although, the caveat to this was some very conservative friends, whom loved me, knew about my obsession, and even though they did not understand it, they would buy me witchy things for my home. One friend brought me a signed photo from Idina Menzel (I cried) and another brought me witchy shoes and brooms ( cried at that one too!) One of my dearest blog friends from down in the States, made me a witchy quilt with parts of my shirt from the Broadway version and other material I sent her. It is still one of my most treasured possessions. In fact, I can think of many lovely gifts my home was filled with from people who cared including wicked T shirts and memorabilia. I adore that about my life.

 

Needless to say, last night I asked my daughter if I could have my stuff back. To which she replied, "Of course mommy, I kept it for you, I know you go through these extreme stages and I knew it was so much of your soul that hopefully something would re ignite and remind you of that." Maybe the decal can eventually find its way back on to my living room sliding door at least? I miss it. 

In all honesty I still feel you can’t beat Idina or Kristin in Broadway’s Wicked but it didn’t ruin it for me at all. The sound felt a bit “muddy” at times and the dancing a tiny bit modern but beautiful, and there were a few times that I missed the original humour of the quirky Broadway charm…but those are my only notes. I have a feeling after multiple watches this may become my new movie obsession. As for the soundtrack - I try to listen to the movie one but it just doesn’t hold up to the quality of the original Broadway soundtrack - so I always end up switching back to that. The vocal ability of the original broadway cast is phenomenal. 

Today, I dug through my old blog archives from a previous blog I took offline, and found more than a few posts on the topic of Wicked. When Glee sang their first Wicked song, I bawled. Finally something mainstream was sharing my love with me. Finally, I heard people talking more about Wicked.  Broadway across Canada brought it home to me a few years later, and each time it came to my vicinity I attended. First with my sister, than my entire little family, and then my good friend and finally my husband and I. I found the post I wrote after my first attendance written in 2011. I feel I have had a lot of growth since the writings of the post, but the core of whom I am, and the deep love I have for each song in the musical has not changed. Now the world shares the love with me, and I am better for that sharing. Now I have friends who are re igniting my love of musicals and Broadway. The heart of whom I have been since a toddler, but often pushed aside in social circles due to baffled looks, is now understood by multiple people outside of my sister, children and husband! That old soul is rising like a Phoenix. I now I see that I’m also a lot like Galinda ( to the point my husband thought she acted more like me in the movie … it’s funny the lenses we see ourselves in as opposed to how someone else sees us?) My father asked my husband, “Which one do you see your wife more in because for me I saw her in both strongly - isn’t that really weird?” 

My husband laughed and replied, “ That's what I thought! She has such a two sided strong persona !”  My mom would state something akin to, “She was more Galinda as a child and teen and Elphaba as a young adult.”  Which is accurate to a point - I was oblivious to my differences with autism into adulthood created a rude awakening and brought up a few issues of my childhood… ( lol my daughter was jealous she wasn’t compared to anyone but she said it was fair since it was my favourite film ever and we see her in many other films.)

 I see my past years of becoming as tumultuous and full of drama and mistakes. I was awkward (still am but not quite as much.) I sometimes was self absorbed while trying to figure out who that self was. I lacked confidence often due to sometimes being quite isolated. But now, I see that the person I am today is slightly more balanced. I quite like her. I know she is IMAGO Dei. I see her in a different light. She also now fits the swirls of both pink and green comfortably without needing excuses as to why. Wicked was a large part of that journey. I know without a doubt, that the CREATOR of all that IS good, loved her and this journey for her too. The one WHOM IS has a surprisingly different set of standards and I know that while I was singing, SPIRIT was enjoying the heightened joy of my soul, right along with me.

(The broom a dear friend gifted me with too and I also got teary. I love it!) 

To see that full circle journey, I am sharing my old post down below along with some previous photos. Enjoy!

Post edit: My best friend from HERE ( https://worldwecreate.blogspot.com/2019/03/sad-endings-can-equal-calm-beginnings.html?m=1 ) wrote to me after we watched the movie together and stated, “ Alphaba, really did remind me of you! Totally!! Head strong, good morals, the weight of the world on her shoulders, scholarly:) yep!“ 

***Below posts were Written in 2011. Keep in mind that terms I use like "Aspie" were ok at that time and even promoted. Also, there are aspects of myself then, that I have let go of now...but I find it beautiful to see this full circle of what was written more than a decade ago!***

Excuse me for this completely frivolous post. I am shamelessly promoting 'Wicked'. One word:

Phenomenal.

This is my favourite Broadway Musical. The comedic script inconspicuously brings several deep themes into the audience's mind. Contrasting the hidden depth is the artistic design. It is apparent from the tiny beads covering the gorgeous costumes, to the dragon head topping the magical set, that all the little details showcase talent. Exceptional. I have listened to these songs on Itunes with the Original Broadway Cast recording over and over. Indina Menzel and Kristin Chenoweth sing for that compilation. If you are a fan of Broadway hits at all I would recommend looking it up on Itunes. 

The lyricist Stephen Shwartz is brilliant. My spirit flies high when I hear 'Defying Gravity,' My passion is ignited with 'As Long As Your Mine,' laughter is invoked for 'Popular,' and 'For Good' brings all past friendships to the forefront of my mind. 

These passionate feelings simply from listening to a few songs were nothing compared to the live experience. "Everyone deserves a chance to fly...To those who ground me- take a message back from me. Tell them how I am defying Gravity. I'm flying high."

To anyone who longs for a place to belong, or the soul who feels a bit different... WICKED speaks to you. I would not recommend the original book. Although the writing is well done, I found it quite perverted. (This is coming from someone who can be quite comfortable with sexual content but I found the original Wicked book lacked taste.) However, the play would not be in existence without the book... which gives a slight point of redemption. The themes in the play focus on friendship, misunderstanding, discrimination, judgements, and the age old adage that appearances can be deceiving.

(It was tough to perfect a wicked look when hundreds of people were waiting their turn for a picture. Ah well.)

My sister gave me tickets as a Christmas present...and I have been waiting ever since. We both decided to go full out. Not many were dressed up for an afternoon which made it that much more fun. We even bought cheesy matching shirts and indulged in a pre-show Ozmopolitan drink. ( Fabulous green vodka.)

I think she wanted me to stop saying "yay we're here" so she stuffed the cherry down my throat. I at least kept hers a bit away:) I cracked up when the picture was done...after I stopped gagging...

At our after show meal, my waiter asked if I was one of the actresses in the Broadway production. (The bonus of living in a hick city full of wranglers and cowboy hats. Needless to say he was tipped well:)

I completely relate to Elphaba...although I have some ditzy pieces of Galinda in there. I think perhaps that is why I love this show. I may not be green but I can relate to not being the skinny gal, the spunky blond, or the gal whom life comes easier to (although let's be real, sometimes it does and I am happy for those times.) I understand wanting to hang out in libraries or museums instead of clubs and parties. I understand passion at an injustice threatening those who may not stand for anything. I understand finding fulfillment in books or a craft. I often make a mess out of trying to do good...which ends up being bad. I understand being misunderstood. Being taken as wicked or witchy when I am just being me. In fact the more I think on it, the more I see myself in Elphaba...at least she gets some magic out of the deal...well, and the man too I guess. Thank God I did get that!
 I am in love with Wicked. If you ever get a chance to splurge...
Try Wicked.

"Something has changed within me. Something is not the same. I'm through with playing by the rules of someone else's game."-(Defying Gravity) My life anthem. In three sentences. A song that I want played in the video montage at my funeral. (Yes, I want a cheesy video montage.) (lol 2024 update - I don’t want this at my funeral. Ha ha;) 

In  the book Asperkids Jennifer Cook O Toole describes her Aspie daughter's obsession. "The following summer, when her dad and I went to see Wicked: The Untold Story of the Witches of Oz (2003) on Broadway, she was so enthralled with my descriptions of the plot and music that she literally begged me to pull up bootleg recordings of Elphaba the witch on Youtube. The soundtrack became background music to our lives, posters decorated her room...That love has never gone away. Last year at age 7, I finally took her to see Wicked...(Jennifer goes on to describe that her daughter also has an obsession with Athena and the Percy Jackson series...I also love those.) So what did this tell me about my child? Actually, it wasn't that hard to see if I sat with her "friends" for a while. In WICKED, we learn that the villain  the one who is "different," is actually the heroine. Against all odds, Elphaba will "defy gravity," flying upwards, embracing the awkward witchy costume others have assembled for her as they continue to misunderstand her efforts to "do good." From high atop the theater, she sings defiantly to the jeering mob below, rejecting their slanderous name calling. Elphie is free of their intimidation and condemnation. No. No amount of disdain can topple her..."- Jennifer Cooke O Toole

"As loud as my daughter could yell, as tall as her little body could stand, my daughter was saying that yes, she knew she was different, but that was because of- not in spite of- her very differences that she mattered, that she belonged..she too was hoping that there was a real place she belonged. She needed the world to know that she was neither wicked nor weird, she was just supposed to be. And so I spoke in her language. I hugged her and sang a line from Wicked, because I knew nothing would be more potent than her own special interest in letting her know I GOT it. I heard her. Softly I called upon the lyrics of friendship and admiration. She, too would change the whole world, like Elphie had changed those who truly knew her, "for good."- Jennifer Cooke O Toole

Like Elphie sings, "I'm limited. Just look at me. I'm limited...and just look at you. You can do all I couldn't do Glinda." The fact is...I AM limited. I feel continually misunderstood in my efforts to do good. Those who are normal seem to get accomplished easily what I sweat to put into practice. I have often longed to be free of the condemnation and constant correction of others. It's an Autistic/ Aspie issue. I know it definitely is, which may be tough for some to understand, but my differences have coloured every interaction of my life. When all I want to do is change someone indefinitely for GOOD.

I want to know that I have impacted my friends to the point that they would be tempted to use For Good at my funeral. Yes, I am that passionate about it. "I've heard it said, that people come into our lives for a reason, bringing something we must learn, and we are lead to those who help us most to grow, if we let them...and we help them in return."(For Good lyrics) I feel many people have been led to me and away from me. I do believe it is because I stretch people...and they definitely stretch me. I would not have it any other way. I want to have that impact. That strong reaction. I think it is why many can not foster long term relationships with me, and why many women are either intimidated or loathe me. (Yes I have heard the stories and I have bawled my eyes out because I did not know what I did. I was myself. And by being myself I am often disliked. I am not saying this for pity. Just stating a fact like Aspies often do.) The song goes on as Glinda sings to Elphaba, "But I know I'm who I am today because I met you...who can say if I've been changed for the better but because I knew you I have been changed for GOOD." That line is the greatest compliment ANYONE could give me. It's the inner desire of my soul. Elphaba sings back, "So let me say before we part, so much of me is made from what I learned from you. You'll be with me like a hand print on my heart. And now whatever way our stories end. I know you have re written mine by being my friend." That is how I feel about every significant friend that has crossed my path. There are some crucial friends who have made ME because of what I learned from them. Being an Aspie, I absorb characteristics, I watch nuances, I find personality traits I want or can relate to and fashion them into myself. I partially make myself up out of facets of whom I choose to be friends with. It's just how we learn to relate. Luckily, I have chosen well. I would say I have very good taste when it comes to people to imitate, give back to, and become friends with.

I make a lot of mistakes. I know I am not the easiest friend to live with. I make people passionately angry at me, and slightly annoyed, and also strongly endeared. It can not be easy to sit on that rollar coaster ride. I often send this line out to all I know; "Because I knew you. I have been changed for Good. And just to clear the air. I ask forgiveness for the things I have done you blame me for."
Glinda sings back, "But then I guess we both have blame to share, and none of it seems to matter anymore." I WANT that. I want the blame to be shared. I want my contacts to see that in their own lesser way they also had a different part of responsibility...and then I want it not to matter. Because it does not to me once reconciliation is talked upon.

(My husband gave these figurines for my thirtieth and he hand painted Galindas hair as they were both from the Wizard of Oz but he wanted them to be reminiscent of wicked. There wasn’t much streamlined paraphernalia and I squealed when I opened them!) 


The Wizard and I...This song hits home because Elphie sings about how she hopes the Wizard will explain her curse/gifts ect and change her exterior to match others, and how she will finally have some merit after living with constant rejection. In childhood I was often overlooked, or chosen as second best by my friends. The song, "I'm not that girl" sums it up perfectly, "Every so often we long to steal to a land that what might have been but that does not settle the ache we feel when reality sets back in. Blithe smile, light limb, she who's winsome  she wins him. Gold hair with a gentle curl, that's the girl he chose and heaven knows I'm not that girl. Don't wish. Don't start. Wishing only wounds the heart. I wasn't born for the rose and pearl. There's a girl I know. He loves her so. I'm not that girl." I feel I should be one of those girls who manages to keep nails immaculate. The ones who complete a polish of their entire being on a daily basis. I wonder with awed curiosity how they live? As much as I lived under that illusion in my past or can create it for photos; I am NOT. That. Girl. Perhaps that is why Elphaba is one of my favourite roles? Perhaps that is why I cried through all the songs in Wicked's musical the first time I heard it 8 years ago? Perhaps it is why I play the songs in my darkest times to remind myself who I am? Perhaps many school mates thought high maintenance when my name was brought up? Truthfully, I am the green girl who does good deeds only to be accused of being the witch. No good deed...The only factor of high maintenance on me was the self inflicted time constraints of the illusion I created. While dusty memories were created by these illusions that won't be traded, I still wonder how many more could have been without it? Maybe it would have been worse? Illusion can also bring beauty. Beauty can hold inspiration. But not all the time. Sometimes a hazy sort of lovely bliss is also in the messy. The undone corners. My best galpal was like Glinda. She wasn't blond but she was everything else. She knew how to make people laugh, what to say, how to be sociable, how to move...everything I was not. I may as well have been painted green. I was awkward, had a lot of heart but did not always know how to communicate it. I was bookish like Elphie. I was interested in justice, and doing good despite what the current rules were. It was too serious for most adolescents. My husband came into the picture and finally I felt somewhat worthy. (?)  I felt like maybe, just maybe, people were seeing me for who I was. "As Long as Your mine" is my top passionate song. My husband gave me those feelings and it helped me grow into future choices. "I need help believing you are with me tonight...My wildest dreamings could not foresee, lying beside you with you wanting me."(As long as Your mine Lyrics) Even being passionately loved she doubts. My life's cross to bear. No matter how much I am loved, there will be a part of me that doubts. Her love interest sings back, "Maybe I'm brainless, maybe I'm wise, but you've got me seeing though different eyes. Somehow I've fallen under your spell and somehow I'm feeling it's up that I fell." WOW. Perhaps this is why I have always wanted to be a witch in any play. I want someone to fall under my spell...my husband says he has:) I always wanted to help someone see life through different eyes. My husband paid me the ultimate compliment by turning to me once when this song was playing (not knowing any of my hidden thoughts at the time.) He seriously spoke, "That is how I feel about you. That is what you did to me." My mouth dropped open and then I laughingly started to cry from pure bliss.

When Elphie and Glinda sing "What is this feeling" about how much they loathe each other when they first meet...I can relate. Most of my friendships started with mutual dislike in some form or another..and then we overcame it...which made our ties even more powerful. We came to understand and by understanding we found our preconceived notions powerfully fall away.

The ultimate song for me is still Defying Gravity, ""Something has changed within me. Something is not the same. I'm through with playing by the rules of someone else's game." I AM through...finally near age 30, I am done playing the games of the normal world. Religion, School, Rules, Social conduct, Should's, Grammar..."proper " ways to speak... "Too late for second guessing. Too late to go back to sleep. It's time to trust my instincts. Close my eyes and LEAP. It's time to try Defying Gravity and you can't pull me down." I just want to live my life, "I'm through accepting limits cuz someone says they're so! Some things I can not change but till I try I'll never know. Too long I've been afraid of loosing love I guess I've lost." There has been a lot of love lost...and this song made me realize that it is time to be done regretting it...or being afraid of loosing what I already have lost. "Well, if that's love it comes at much too high a cost. I sooner try Defying gravity. Kiss me goodbye I'm defying gravity...Everyone deserves a chance to fly...and if I'm flying solo AT LEAST I'M FLYING FREE. TO THOSE WHO GROUND ME TAKE A MESSAGE BACK FROM ME! TELL THEM HOW I'M DEFYING GRAVITY. I'm flying high. I'm defying gravity." -My favourite line. I think of so many moments since being married, so many moments of people telling me what I am, who I should be, how I am selfish when I was trying so hard to be the opposite, and all the confusion with relationships that were surface level (Friends of mine- do not count yourselves in this) and I would rather fly SOLO. Freedom is integral to my being. So is acceptance but I am learning that is a bit tougher for an Aspie longterm.

Elphaba is more than a character to me, the songs are more than melody, and Wicked is more than an obsession. As Jennifer Cooke. O. Toole writes, "I hoped if I could devour enough names, dates, and places, God would send me to a time and place far away where I truly belonged. Obviously, this wasn't it. And that is what a special interest is. To those outside the Aspie world, our perseveration of a topic is exhausting  ..To an Aspie, our special interest is the gateway to the world we construct out of facts, fantasy, and logic. As much as you hear, it is only the tip of the ice burg of the wealth of thought, the seduction of belonging, the sacred- YES SACRED-dimension where we cannot mess up or be excluded. Where no one will ever skip and sing in celebration that we are "dead."(Jennifer Cooke O Toole. pg41) My sacred heart calling is to be accepted, to change the world for good, to defy the stupid rules and make an impact.
Love
Kmarie

 

Receiving My Canadian Certification of Indian Status; A Heritage and Ancestry Celebration

I wasn’t going to share this, due to misconceptions, judgements and opinions. But there is something to the poetry of BEING that is meant to be shared, despite all of that harsher reality. It’s worth it. Now, let's get the boring political jargon and myths out of the way before my celebratory post:

(My husbands gift to me for this celebration) 

 **Note on terms: "Indian Status" is what the Government of Canada terms my card due to the treaty. Currently, I know that "Indigenous" is a preferred term. Some of my relatives are all about the terms, while others could not care less. My Grandpa is one of the latter. From an early age he taught me that it is not the words themselves but the way they are stated in, or the love, respect or dignity (or lack thereof) within context given. He has been slurred with the word "Indian" and he has been honoured by the word "Indian." He taught me, when I was a wee one in the early eighties, to be proud of the term. "First Nations" became larger a term as I grew up, followed by "Native," followed by "Aboriginal," and now "Indigenous." I have written about vocabulary on terms based on my Autism diagnosis Click HERE. I feel the same mentality applies. This blog is my home and I am comfortable using the terms interchangeably based on my personal history. I believe each of them has been used for harm but also for good, depending on the person behind the words. I am personally honoured to have each term applied to myself. If you carry wounds from these words, please translate them to words that cause less pain for yourself, but know that I am saying them from a place of empowerment, honouring, and personal heritage. ** 

**Note on the myths of benefits: I do not live on a reserve, neither do most of my relatives that carry status cards. The government does count my status to give to the band I am registered with, to determine the benefits for that reserve, however where I live, there are not many benefits (if any). No, we do not just get free university. No, we do not all have tax free lives (it does not affect me at all.) The one benefit I have besides border crossing more easily (which I do not really need) is some prescriptions covered (which I have not used in years.) Here is an article on this before any assumptions are made on what I do or do not deserve: https://www.cbc.ca/news/indigenous/indian-status-5-more-things-you-need-to-know-1.3109451 So, if I do not receive benefits, why is it important to me? Why did I apply? Well, that is answered in my post below. 

***

What does it mean to embrace a heritage, if one is the true definition of a Canadian: A mosiac of varied histories, legacies and nations? As I wrote in THIS (click) post about being Canadian: "I belong to this land. I have cherished its freedom. I am proud that my ancestor from Spain drove cattle from Mexico into the heart of Caribou County. I have often wondered, when I was in the heart of the mountains, if my Indigenous ancestors from the Secwepemc/ Shuswap nation traversed similar paths. I am thankful that my German, Danish, English and Romanian ancestors on the other side of my family tree, found their freedom when they were being persecuted in their home countries. They dug roots so that my down home could run deep. They celebrated that their country allowed for the freedoms of worship, community, health rights, and autonomy. They built up generations for the place I now call home. " (For more on the personal Indigenous/ Spanish history of my Grandpa T. Click HERE) 

If I could, I would love to live on the land of each of my ancestral blood ties. I love learning about each of the histories and tracing back as far as I can, into the shared hardships and joys of the different ancestors in my genetic line. It is a crucial part of BEING. Just like my Autism diagnosis was a crucial part of discovering myself, or my MBTI of INFJ. Having my Status card is another piece to the glorious BEING of ME, shaped by generations before. However, just like INFJ or Autistic, these terms do not explain the WHOLE of myself. Genetics ARE important for many aspects of living in health and family, but they are not the END STATEMENT. Family is not only blood, but those who CHOOSE to love. Health is not just genetics but also choices. Complexity is in BEING. There are so many facets. That stated, each layer of self discovery, and honouring roots, adds beauty to life.

***

This year has been so full of change, grief, and joy that I almost forgot I had applied. I had given it a brief thought a few weeks ago, wishing that I had my status when I was filling out a form, just so I could honour my Grandfather's roots and state,"Yes, that is in my history." But I couldn't and I promptly was swept away with daily life details. Until yesterday, when my husband walked into my bedroom humming a Native trill that my Grandpa used to sing while he patted my back as a baby, and waving a letter. His face shone with excitement and immediately I KNEW. My sense of home shifted once again. I did not think I could feel more at home, but a settled rootedness grew in an instant of confirmation, before I could even rip open the letter...

***

Blood ties appeal to my mystical soul (herbalist/ folklorist/ and nature based, which I call fondly 'witchy' due to my love of all things Harry Potter and Broadway's Wicked.) I am the one who loves nature and feels deep ties to the land. My spirituality has always been connected to nature. God is in every speck. I knew God before I could speak. I FELT Divinity playing in my Grandmother's yard and watching the flowers sway. Before my Christian upbringing combined with my Mystical upbringing gave me words, I had an inner KNOWING. It was easy for me to accept a God I could not see, because I saw and adored the Creation. Talking with others on the topic, I have found my way of seeing the world was not as common as I thought. There were outdoorsy people (which I am NOT) and then there were lovers of nature like me...(See THIS post for more on my love of nature.) I spent much of my childhood on the lands near my band's reserve. My Grandpa would take me on hikes in the forrest to pick Saskatoon berries and blueberries (still some of my favourites!) As I wrote HERE (click):Half of my life growing up I spent at each of my grandparents' houses for the summers in the Cariboo Mountains. Grandpa would take me into the forest and give me instructions on bear safety and the sounds of the forest- most of which I have unfortunately forgotten but some rules stuck. As we trudged up the path, me weary and him bursting with energy, he would stop and point out waterfalls and flowers.  The man who would kill to eat, stepped aside to not crush a flower. "Missy, a good person won't leave an imprint in the forest they travel, unless it's to mark their path." He would break twigs off to show me how to know where I have been while looking forward to where I should go. My favourite part was when we'd see the orange/ red peeking out from the grass. Indian Paintbrush. They symbolized Grandpa T. to me. I'd rush over and exclaim, "Grandpa, I found Indian Paintbrush!" He would crouch down and touch the pretty flower weed. "This is fire just like your ancestors. They understood that each living thing is a gift of creation. Each living thing possess the breath God breathed to create."  Occasionally he would allow me to pick one and take it home. Grandma would put it in a pretty vase and serve me cookies as I stared at the fiery passion of nature, grateful for my roots.

***

A few weeks before he died last October, my brother in law freely took my picture for my application for Status. I was awkward. He, of course, was smooth and charming, so he tried to make me feel at ease with his smile. He told me he read up on it and I was not supposed to smile. As I was walking out, he asked me to inform him if I received my status. I knew he was probably just being polite, but I made a mental note to inform him regardless. Unfortunately, I can not thank him personally once again and tell him I received it. However, I believe in the spiral dances of life. Part of my process oddly carried my husband's German ancestry. His relative was part of the process. That feels a bit more WHOLE.

***

My Auntie Donna died a few years ago. She had her Status and always wanted me to get mine. I had applied in my early twenties but the paternal/ maternal laws were different and I was denied. When the laws switched to honour maternal, with my extended family's encouragement and my brother's print offs, I re applied. Honestly, it's a lot of work, as anyone who deals with forms and red tape can attest to, and part of me did not feel like doing the work again only to be denied. 

***

PRESENCE. My aunt had a presence and part of her essence was driven by her deep love of our Native roots. She knew more about that aspect of our history, and was more attached to our relatives on the reserves. Pre internet, she was constantly researching the background of our original tribe. My Aunt has been on my mind more so than when she first passed away. This last year I have had moments of grief so strong, in random places, remembering her. Recently, we attended an event where a lady sang, "Love Can Build a Bridge." She sounded just like The Judds. I stopped her afterwards and with choked up tears I stated, "You sang beautifully. I felt like my Aunt was sitting beside me. She loved that song and the Judds whom you sounded like. She passed away recently, but I felt her tonight. Thank you." Part of why I applied again, was because of my Auntie Donna. The spiral has circled back and I am incorporating her legacy and Spirit into my own dance of life. I wish I could show her my card. She would have been so excited. I partially re applied because of her. (Click HERE for her tribute post.) My Grandmother, who also recently passed away, also wished this for me and I sent sparks of gratitude to heaven for her part in my story.

***

A few years ago, an Anthropologist/Archeologist was visiting our home to speak at one of our 'Called to Questions' (a monthly gathering where we invite professors from Universities/Tradespeople passionate about their topics etc. to present and enter into dialogue with invited guests.) We conversed on the topic of being Canadian, and what that means. I told her a bit of my history and how I was debating on re applying but felt guilty because I was not full blooded Indigenous. She surprised me with her passion, "It is actually your DUTY to try again. Even if you carry a speck that the government acknowledges, it is a priority to show them the many people of their country who carry these ancient bloodlines. These peoples who lived on this land are integral to our being... many of which helped us to survive here. I study various cultures and have headed up many digs. I especially loved being with the Natives of Nicaragua. From my standpoint, it is not only a duty, but an honour to be able to have ties to the land you walk upon and to state it and show proof of it to those who doubt. I strongly encourage you to re apply." 

***

A few months later, I was conversing with my adopted Aunt on my husband's side who is fully Indigenous, I asked her if it would bother her at all...since I clearly have many other bloodlines within me. We had a beautiful conversation but I can recall her saying something akin to, "It's a part of you. I can feel the connection we share of the love of nature. I recognize this in you. I would never hold it against you if you applied. I would celebrate it." And yesterday, when I texted her...she did.

***

Canadas National Indigenous Peoples Day is June 21. The mystic in me loves that this is also Summer Solstice/ Litha. (click.) Our family loves to mark the seasons. This year my spiritual worlds collide on this day. I love marking the moon and discovering new names for the moon from the T’exelcemc is even more special. 

***

These are some of the myriad of reasons I teared up when my Status card arrived. This is why I texted anyone I could think of to celebrate. Most did not bother to acknowledge the beauty in it, but the friends and family who did, KNEW. They KNEW my history, my bonds, my spirituality and their statements of congrats or acknowledgement, whispered understanding, community and connection into my soul. Spiralling into my heart's dance, their voices combined. They are a part of my status too. They are a part of my journey and rooted belonging. On and off, the entire day I felt like I was walking on clouds. I felt euphoric. I felt immense gratitude for belonging, peoples, land, earth and sky. The landscape of ABUNDANCE. I felt closer to God. I was reminded I am still BECOMING. There are more layers to my story, but this is one. This is important. This is me.

I felt belonging.

Post ADDITION : I actually do get one benefit- it turns out my dental is almost all covered-  even though I do not live on a reserve-  which is amazing as I have terrible teeth and no insurance so now that saves me my teeth and a ton of money!!! 

Song Choice: My husband loves this because it's his Viking roots mixed with Native American songs...lol he also played me "Indian Outlaw" which is probably considered culturally inappropriate today but it did remind me of the nineties when I loved the fact that our culture was mentioned in a country song! I loved the beat...so yes, I'm guilty of throwing my head back laughing and dancing along with it in celebration with my family! And of course, anyone who knows me, knows my love of the song "Colours of the Wind" which I have sung to my children for 19 years at bedtime. I loved Disney's Pocahontas as a child, and still do, despite it being called to cancellation by some. To me it represented aspects of my heritage, when many of those stories were lacking as main heroines at the time. I sang Colours of the Wind to my children every night that I tucked them in (followed by Part of Your World (Little Mermaid) and God Help the Outcasts ( Hunchback) to which I still choke up at every time! The lyrics to Colours of the Wind still apply to our times, "How can there be so much that you don't know? You don't know…" We don't know each path for each person. The riches of the earth are all around us. We are all connected to each other. The hoop of Life spirals amongst us. The wolf cry ignites my spirit. We all need to sing with all the voices of the mountains and paint with the colours of the wind...: