The Autistic Disparity and Gratitude to My Mother and other Supports

Recently my friends Jenna and Jennifer published their second book called, "The Actually Autistic Guide to Building Independence." I’m looking forward to reading it. ( I also contributed a quote again so yay!) At forty, I still have issues with independence and dependence. Their email announcing the book was timely. An incident had just occurred so I wrote back with;

"Congrats Jennifer and Jenna!!! You did it again !!!! I will definitely be ordering a copy …you ladies deserve some cake! I hope you celebrate with something decadent and delicious ! Bravo!!!!!!!You know this was timely: I’m forty now but still often feel …. Well, ya know how it goes … maybe the word I struggle with most is incapable. Tomorrow my (also autistic) son gets his cast re done from a hand surgery an hour away and it’s supposed to rain. I’m a terrible driver and lack independence that way. He’s better at driving but could be in pain after - so I had to ask my mother to drive him (as my daughter and husband were unable to move their jobs tomorrow.) In all honesty it makes me feel so incompetent as a mom, but also relieved someone more capable than I, will be there to ask questions in a hospital setting (I’m terrible at hospitals) and drive safely if it does thundershower. But yet I stay at home a little useless … Anyway, moments like these take me to the fact that I STILL rely on my mother sometimes, even though I’m forty with a mostly grown family! So I’m eager to read your book to perhaps help my children be a little less dependent than I am (though it’s not so bad with a good support team to which I’m grateful for !:)Anyway, thank you for sharing your gifts with the world! All the love and best!" Kmarie

Currently I’m also quite sick in the mornings. (This has been my typical mode for most of my life with conditions I have spoken of before. My magic number seems to be after 10 or 11 am for abating of intense symptoms.) With H Pylori I’m currently sleeping even more and falling asleep in the afternoons too - and if this sleep schedule is disturbed I feel quite sick. Thus, getting up at 7am to drive to the hospital also was a concern of setting my health back at least a few days. The hospital out patient setting gets my ulcer churning no matter how much prayer and meditation I do (and yes I’ve massively improved and know God is still with me which I’m grateful for.) I’m supposed to avoid general upset while the ulcer heals which is actually not the easiest. I’m not a strong driver. My son wanted to go to a government building downtown where it’s sketchy and I’m out of my element and he has a major injury. So, I texted my mother at midnight asking her to go in my stead and she graciously accepted taking a huge load off my shoulders. Then I promptly emailed the gals the above note.

                                       

Jennifer wrote back;

"You are so dear! 

And guess what? I didn't even BEGIN to learn to drive until my late 30s. TOTALLY could NOT handle it. Please give yourself some grace, dear one!!!You are one of the most amazing writers I know, an incredible mom and partner, and your home decorating??? Off the charts. So **I** would call you HIGHLY capable. We Autistic folx have certain astounding strengths and then maybe some areas in NT skills sets that we don't excel at. FINE. I take YOU. Unique and magical YOU. (Also, WHO is good at hospitals? YIKES.) (Who doesn't depend on their mom? My mom and I had a complicated relationship growing up, but I depend on her hugely now--and she on me. Glad you have this mother!!!)

okay, lots of upper-case feelings here, because you are wonderful. I hope all goes well with son/mom/storm. Love, JEB"

When I received Jennifer’s email I felt a huge burden lift off my shoulders. I smiled and felt immense gratitude.That’s what encouragement and acceptance can do! Genuine expressions of love cover a multitude of shortcomings.

Autistic people have a larger gap of disparity in their giftings and areas that require support. It’s not typically obvious to outsiders (either the gifts or the struggles depending on how good the masking abilities are of said Autistic person.) The areas I beat myself over are mostly in the motor skill department ( driving/ cooking/ adjusting to new situations… I literally learned last month how to pay for parking by myself and was so proud, but I honestly don’t know if I could do it at a different building without support again.) In general I come across as pretty capable. Some of this is confidence, some is age and letting go of perceptions, but in some situations - it’s also masking, in an attempt to salvage my dignity or the time it would take to explain, or the lack of desire to actually have someone understand. At this point, I don’t need that often, unless the situation is dire or I’m on the verge of panic (which I’m also good at masking up until breaking point.) I’m actually out of my element a lot. Yet, somehow my children have reached adulthood mostly unscathed and largely admired in the community. But I still have to mask my struggle each time I have to pay at a machine, drive somewhere, navigate a new person or system in a business setting, or deal with any sort of unexpected event.

On the flip side Jennifer is right. Each autistic person has an area they tend to excel in. I know an Autistic lady who can’t speak and is confined to a wheelchair but she writes the most beautiful stories on her device. I know another Autistic person who seems “normal” when interacted with and has a great career from home, but can barely leave his home due to massive anxiety. Which one has it better? Neither. They both have beautiful gifts and hard autistic realities. 

My mother tends to come through for me, or my children, in these circumstances on a fairly seasonal basis. When my husband is unavailable to be the main support - she often will be available. Especially for hospital trips or city excursions. When my children were younger it was for medical/ sometimes dental/ and most school functions or requirements before I pulled them out of school and into a much easier life! Even though my two older children are considered adults, both are on the autism scale, so both have needed supports in varied ways. We often joke that our family of five with our ranging disabilities make up one functional adult. My husband has ADD and my youngest struggles with Dyspraxia and slow processing speed. Yet, each of our gifts can outweigh the others weakness. Even with 5 of us, sometimes we require outsourcing, which is where people like my mother come into our picture. It’s rare. We like to be independent when possible… but when we truly ask for it- she is often happy to comply or finds it a non issue. This blows my mind. How can it be so easy to drive and be an adult? How can she put together a big family meal so easily? How does she know how to pay parking or navigate a new city street with ease? How can she drive in the bigger cities ? Or navigate concert venues and needed bathrooms? Or book tickets or hotels? Or travel without many issues? Or figure out government red tape? Or be a safe presence to my children in an uncertain situation? Or understand school facility jargon? Sometimes I look at my loved ones doing ordinary tasks and I’m honestly so struck by their presence. 

The other day, my best friend from grade 5 onward asked me to accompany her to the nearby city to get groceries because it had been a while since we had caught up. As we were walking around Walmart

I was hit with how much capability she has. I pushed the cart as she multitasked and narrated why she needed each thing or what else she needed. She picked up a head of cauliflower and compared it to another one and asked me which one looked better… I had no idea! Luckily, she decided at that moment and I just nodded along. Then she proceeded to tell me about the salad she was going to make with it and how it would be something simple to add to her supper that night. That would be a huge deal to me! It would be the main meal because I would have put all my energy into that ONE salad. It would be a feat on its own-  ha!

Then she went over to the jewellery section to find something for her daughter’s grad outfit, as well as to find some shirts for her sons for the banquet. We attended this grad banquet at this school, together, over twenty years ago. We both sang a duet together at the ceremony but butchered it because we were holding hands and trying not to cry… I sometimes do not feel much has changed since High School, and in other ways everything has changed. But the core of how I work hasn't exactly grown leaps and bounds. Anyway, the way she talked about each item so casually and didn’t seem to panic about cost, or figuring out how it would work in her budget, or having to check with her husband about the “right item,” plus the ease in which she found her items astonished me. I just enjoyed watching her. She inspires me and I adore her. I found it incredibly interesting and like I was studying an entirely different species …

This has happened before. Since grade 5 Rachael has baffled, astounded and supported me. She states she feels the same way about how I can read and absorb books so fast or understand large concepts. In the real world though my skills do not translate very far. I love going shopping with Rachael because it just looks so easy. I love watching her shop. It’s not something that I can do easily. The only shopping I’m good at is Plato’s closet bargains to clothe my family or Costco because I’ve memorized exactly what I need to get and what aisle everything is on, but I wouldn’t exactly call shopping otherwise my pleasure. Unless it’s for Reno's or Design for myself or someone else - then I’m in my element! I’m efficient at Costco because I’ve adapted the last 15 years, yet I still get butterflies and stressed out every time. What if there are not enough funds in debit at the time? ( I check and re check.) What if I missed something important? What if the food isn't packed properly and goes bad? How does one even decide how to put all these ingredients together to make a full meal that isn't spaghetti or tuna curry?

As much as I love watching Rachael shop, though, there is a part of me that comes home a little deflated. ( Not because of anything she has done except be totally amazing but due to my frustration with myself.) My husband can always tell. He usually comes up and gives me a hug and states something akin to, “You’re beautiful the way you are and it’s great that you love Rachael so much and she loves you, but you are two totally different people. Do not compare. You are not her. She is not you. You both complement each other and I love you just the way you are.” Unfortunately, my insecurity and bafflement at how someone can be so capable (and how did I miss grown-up school?!) often comes to the surface. I don’t feel like the grown-up in these circumstances. I still feel like the teenager. It can give a little bit of a beating to my psyche. I will struggle with feelings of inferiority. She grew up in these areas and while I DID try over and over again, I did not come to the same level of capability. I did, however, learn multiple work arounds and creative ways to look like our life is sort of "normal." I compare a bit though still in these areas. I truly do. Yet, I believe God gave us to each other for a special friendship for life. My insecurity is not her fault. I continually have to give that to God. Because that is on ME. But it helps to have someone else like Jennifer or my husband remind me that I’m still worthy simply because I exist ( and Rachael often reminds me too!) It’s why I used to end all my posts with that phrase. Because God continually has to remind me and thus I also need to remind others. In our weaknesses, God IS. Sometimes our multchy manure helps the good plants to grow. (Enticing ending right?)

Song Choice: Wings- Jonas Brothers

Multiple Sided Anti- Hero: INFJ/ Enneagram 4/ Scorpio/ Projector/ Autistic/ Aphrodite Mind Conversations(Or Why I take Blogposts Down)

My Enneagram 4 ( Enneagram personality): I have all these feelings. Maybe I should write a post about it? It will feel good to get angst and thoughts out.

My INFJ (MBTI Personality) : Well, if it considers most people's perspectives and if not, maybe include multiple disclaimers? Will it have a harmonious tone? Will it be inspiring somehow? At least help someone?

My Projector (Human Design Personality): I was not invited by someone to write. No one requested this...so it will not end well. Remember, I am supposed to just stay in my lane and I thrive when I do my own thing and if others invite me into their process...that is when the magic happens.

My Scorpio (Astrological sign) : Who gives a crap? You do you babe...Why am I talking to myself in third person?

My Enneagram 4: But my feelings help others feel... right? That's what feelings are FOR.

My INFJ: Erm, don't be selfish. I need to make sure I am at least putting something good out into the ether. But fine, I can write and publish a post.

My (click) Aphrodite (Jungian Greek myth Personality): I need to include some images that are beautiful or inspiring. Beauty heals. Beauty brings out sides of humanity we often forget about. Some sensual delights from beautiful foods, outfits, music, and nature or images are a healthy way to convey humanity... (pausing in thought) I still do not understand why my husband and children insisted I take down that sheer black curtain with the pretty gems hanging down from it that I draped in front of my bedroom door. I thought it was pretty."

My INFJ: Well, my rational self eventually saw it. Even my youngest saw it. C'mon he even stated, "Mom, these curtains say (then he changed his voice into a sultry tone) this is my SECOND job!"

My Aphrodite: It was pretty. Sheer fabrics and crystals should not be just overly sexualized. Do they have a tone of sensuality? Maybe, but mostly, they give off a glamour.

My Scorpio: Own it baby!

My Aspie/ Autistic self (Brain difference diagnosis): Rationally, people make assumptions based on what they have seen on TV, and thus they most likely will, as your daughter stated, "Associate it with Burlesque."

My Enneagram 4: But she also said, "Mom I saw it and immediately stifled my reaction because I know you and you're an interesting mix of innocent seduction and knowing beauty. You were so excited to show me and I figured awe poor mom, she just loves sparkly things and fabrics and being creative...she's cute so try to act nice about it. She wasn't going for Burlesque vibes."

My Scorpio: So what?? OWN it.

My Aspie Autistic self: Do you ever get tired of saying that? Own what exactly? There is a fine line between trying to fit into society a bit and being yourself. Just pay attention to the logic. The science. Stifle the emotions if you have to.

My Enneagram 4: STIFLE THE EMOTIONS?!?! Where is the beauty and joy in that?? What about mysticism? What about the joy of the unexpected? 

My INFJ: Crap, the post has been up for a few days...there are a lot of personal details in there...and photos that could be copied or used nefariously. Do I really want to give people that power? 

My Scorpio: It's not about power. It's about privacy, mystery, needing space.

My Mental Illness of Occasional Anxiety: What if people do find the post and use it in the wrong way? What if I am putting my family at risk? Why did I write in the first place? Why am I even on the internet? I am supposed to never be found online. ERASE! ERASE!! ERASE!!!!!!!!

My Scorpio: Man, I am a lot. Sweet!!! But that's fine to erase it - If it makes me feel more comfortable -easy peasy. Keep it for my kids and if I want to put it back up it's always just a click away. No biggie. Besides, a little drama in life is fun. Don't be so boring like those other astrological signs. I'm a Scorpio, I need to act like it.

My Aphrodite: Try some humility- you love the other signs because at least they are not you!  … But what about inspiring others with a beautiful word or image or?

My Enneagram 4 (singing Taylor Swift): "I should not be left to my own devices, they come with prices and vices, I end up with crisis. Tale as old as time.... It's me. Hi! I'm the problem, it's me...it must be exhausting always rooting for the anti hero..."

My Aspie /Autistic self: Dramatic much? Yup, I'm a LOT. Also, does anybody even read blogs anymore? I guess in the end it doesn’t matter… it’s just me right?

My Scorpio: Own it babe. It's why only certain people love you but when they do, man do you inspire some loyalty!

My Anxiety: Do I actually??

Also, Am I schizophrenic?

My Aspie Autistic self: You were ruled out for that remember? As was originally stated, "Your hyper imagination combined with your interesting persona and continual cognitive awareness...is normal. The diagnosis of Aspergers Syndrome combined with occasional Anxiety, ADD, and multiple learning disabilities makes for an interesting person, that's all." Well, not NORMAL, but normal for who you are. 

My Enneagram 4 (still singing Taylor Swift): "Sometimes I feel like everybody is a sexy baby and I'm a monster on the hill. Too big to hang out slowly lurching towards your favourite city..."

My Aphrodite: Well, other times I feel like all of life is sexy so there's that…

My INFJ: It's BOTH/ AND... I root for the anti hero sometimes but how many people actually do? Wait, am I the anti hero? 

Yea, that makes sense actually...

My Mental Illness of Occasional Anxiety: Maybe I need a new diagnosis? My inner dialogue sounds certifiably insane... so many sides.

My Enneagram Four: That's called artistry. If you were a celebrity it would be no big deal.

My INFJ (Panicking): Celebrity !??  Who said anything about fame? Anytime I get more that a certain amount of clicks on my blog I start taking posts down! 

My Enneagram 4: Well, what is the point of being like this without using any of it?

My Aphrodite: My house is proof that I use it. Hence, the whole curtain debacle. Most times though, it works out. At least my family is inspired right?...Or they get a good laugh and I can laugh in hindsight...

My Autistic Aspie self: Back to the topic at hand. Should the blog post come down or not?

Enneagram 4: How are you feeling about it?

Anxiety: YES! Take it down NOW!

My Aphrodite: I'm getting tired. It's time to go soak up some nature and stare at some crystals...maybe write a love note to my husband and reach out to a friend. Please stop with the screens...it never feels that satisfying in the end. Real life. Tangible sensory. Immerse in it.

My INFJ: Ok, the post did whatever work it was supposed to do. It can come down...but I worry that maybe someone who will have needed it will miss it?

My Anxiety: I worry it's already been used for some horrible use. Also, what if I was misunderstood?

My Enneagram 4: I am always misunderstood.

My Aspie/ autistic self: Well, maybe take out the ALWAYS...but otherwise... ( shrugs) accurate.

My INFJ: Stop being so dramatic. Harmonize.  Balance. Adjust. Ok, the post is down. Relax.

Scorpio: I am not the hero in the story. I am just me. I need to do me babe. I need to OWN IT.

My projector: Do I care about this anymore?

My Enneagram 4: I need to write a post about this.  (Cue endless circle of my life)

Song Choice: Anti Hero- Taylor Swift

The Rested Soul: I’m not enough and that is OK

(We almost finished my son’s room before visiting my grandma and I just love the results!) 

Context: this post is written during a time of constant bodily distress. For some unknown reason, I have picked up every bug I feel I’ve been exposed to since before Christmas… I have not had this many struggles with viral health since my children were little. I was diagnosed with other issues recently ) This in turn has set back a lot of my diagnosed autoimmune and health disorders. I am not stating this for pity, but to the fact that I have suffered daily with questions about life, health, and the meaning of me within a space of limited energy, diet, functionality and ability. There are days when I am well enough to be out in public and seem OK but they are far and few in between the worst days. Because what I’m going to state is actually the opposite and might seem like I have it all together, but these are the lessons I’ve learned during daily struggle. Some days I feel like I can’t do it physically and my symptoms look hidden to most people, but they are there. This is crucial for setting the context of this post. 

Additional Disclaimer: I have been immersed in Christian culture the last few years again. I want to state the difference between Christian culture and a belief in God. There are key differences. Christian culture has a lot of merit and there are beautiful things that come from it however, there are also some strange, weird and ugly things that also stem from Christian belief and culture. I have written about them before in my past, and I’ve dealt with many of them, but find that they creep up again when I’m immersed in the surroundings of the culture again. I want to point out that God is above Christian culture and while God is in all things good… Things that are wrong about it are not part of a belief in God, but a human construct. I am actually writing this post , with this cultural mindset in mind. People of differing belief may still get something out of my post, as I’m still the same author from previous ones, but like anything in life - this post may not be for you at this time either and that is Ok too. 

********

I’m not enough. 

I am faced with that statement each day to varying degrees. But I’ve learned something important throughout my daily struggle. I am not enough, but that’s OK. Because God is. And I have access to God. The mysterious one who encompasses all things GOOD. The beauty of the world and it's simplicity is grounded and rooted in this strange Being. With a breath of relief, I am rested in this Knowing. I am not enough. And I don’t have to be.

This is a hard won lesson. I learned it years ago when I had to use a wheelchair in malls to get around. I learned it when my kids were little and I felt overwhelmed with anxiety and a deep, dark depression daily. And I continue to learn it. As stated before, I don’t like to glamorize chronic illness, and there are worse things and diseases that I could be diagnosed with, and I’m thankful for my lot in life. But that doesn’t dismiss the struggle that I personally have or that others have within their certain conundrums in life. However, the beauty of struggle, if one can dwell in a place of gratitude, is the reliance on something Other. The Spirit of Wonder and Grace… more so than any other adjective though, is the Spirit of Love. I can accomplish all the world has to offer, but if I do not have love, it is meaningless, empty, and full of dark. With Love anything can be conquered ( Well, in the ultimate end anyway… I don’t wish to sound trite but the truth still stands that love outweighs All.) Where the spirit of the Love is… There is freedom. 

I live in a place where Church attendance is considered a hallmark of faith. We escaped that years ago and had a long, lovely break from it all. We learned that church is found in nature, where two or three are gathered, in spiritual awareness and companionship, in art combined with a Spirit of Love and in the fellowship of those of both like minded faith and differing mindsets. Where God is. It doesn’t have to be in a building, although that can be a wonderful attribute at times. But it shouldn’t be considered a hallmark of faith. In fact, I have seen people who sit through the same sermons over and over again and never grow beyond a certain mindset. 

We must always be growing, seeking and becoming, but on the opposite side paradoxically, we must always be resting, at peace, and grateful with the one who is Jireh. I’ve been judged on this. Sometimes vocally, and sometimes I can just feel it a bit… Because truthfully mornings are my worst time when I am in a flare or struggling with illness, or that time of the month when I’m almost haemorrhaging. I can seem fine later in the day and if church was at night, I’d probably be more of a regular attendee because there are aspects that I value in the current church that we are in. But this complexity of my life puts me at advantage and disadvantage. I’m at a disadvantage because I’m considered unreliable or unworthy to serve in the capacity that is wanted. A massive advantage is that I have learned not to be purposefooled into thinking that ministry, busy work, serving, or any other type of striving makes me better or less than the people around me. I have to rely on God only. Over and over again. I have to find my worth not in what I do or even descriptors of who I am but who God is overall, because some days I don’t make it out of bed. Some days I am defined by limitations and yet there is so much beauty still when I look for it. 

The advantage is that I often don’t get caught up in a life that is defined by others. When I do, it’s quickly smashed to pieces. I do not have anything to prove on the best of days because I don’t need to prove anything ultimately. God is enough. Ironically, people are continually brought to my home to be fed spiritually and physically and  mentally… To be rested or encouraged or inspired. But not in a way that can be measured in conversation or used as a social media descriptor ( if I had social media.) It has not been in my personal cards to ever have a fully attained description of what I do in the world. Which puts me at a worldly disadvantage, but I feel it also gives my a spiritual lesson I would not exchange. I have different struggles than those who have been Purposefooled (an excellent book found HERE for those who ARE which my husband benefited from greatly.) I have different lessons. Anxious lessons about body which connects to my spiritual side. An inability to do “normal things” well. Daily, ordinary struggles that aren’t typically understood by the masses but definitely understood by those who suffer bodily. 

There are seasons we are completely left alone (usually when healing, restorative rest is required.) Our life doesn’t look like order much to the chagrin of establishments or those who value those as ultimate authority ( as institutions are required to be orderly which IS important) but there is a facet of Order running through the chaos in our lives. I believe God loves order, so a form of order is created. It is an artful gaze of beauty running through the knotted tangles, but life is also messy. It’s a fact in this world. To seek perfection is to seek to BE God. No thanks. I don’t want that humanely impossible goal. I’d rather let God be God and accept that because God is God, I don’t need to prove anything. I can be lavished in LOVE…even in misery. I’m a continually reformed perfectionist whom is learning this lesson season by season, over and over. I learn it, unlearn it, rest in it, angst in it… rinse and repeat. 

With my humanness at the forefront, I also understand that I’m not always going to understand. I must embrace the Peace that TRANSCENDS all understanding. 

(Looks can be deceptive. This picture was taken when my gut was a mess and I had just finished gagging and dry heaving...but we still had a laugh and a snuggle because life is BOTH AND.)

I’m also aware that just because I rest in Peace, it does not negate that I am also required to grow, to become more of Spirit, to take up the responsibilities and burdens I have specifically been given. Lately, this is in the form of learning more about emotions. I am grateful for books that enter my life exactly when my soul needs them. 

The “Untangle your Emotions” book by Jennie Allen (click) is the latest book I have needed. For years in cognitive therapy I learned how to re wire my thoughts and create new circuits in my brain. It took years of hard work and I’m better for it. Yet, there are many facets to being human. When the focus was on thoughts, I did leave behind many of my feelings. It’s time to unwind my tangled emotions, allow them to be felt, and acknowledge that I’m a deeply feeling human. Even the least feeling of us humans, is affected by feelings, whether they wish to acknowledge this fact or not. While the book is definitely immersed in Christian cultural language, the truths I’ve found are going to be re visited over and over for myself at this time. God expresses all emotions yet without missing the mark. We live in an emotionally charged culture where emotions are considered “full truth” at the expense of all else. On the opposite side, Christian culture often represses human emotion … there is a balance to be found and the book is excellent at marrying the science of the brain with faith on the spectrum of emotion. 

We each have our own unique blessings and hardships. I prefer to use those words over privilege and unfairness. I have learned that leaning into the concept of blessings, even when I’m struggling, changes me. My circumstances do not always change, but something inside me shifts, and that peace that transcends all understanding re emerges within. Nothing changed yet everything changes.

A short list of personal gratitude’s:

- The way the air catches the outdoor curtains hanging on my deck and in that moment all I have to do is watch it twirl and breathe. 

- Sunshine that soaks into the skin and helps calm a nauseous stomach.

- Foods that don’t taste as bad when they come back up with heartburn and deep burping later. Even if it means I’m knocking back milkshakes and salt and vinegar chips at an alarming and unhealthy rate. Sometimes one temporary ( hopefully) unhealthy thing is the lesser evil.

- Gaviscon ( my husband jokingly calls it Grammascon) - it has literally stopped embarrassing random public gagging attacks immediately. I’m not a medication gal but it’s been a life saver! I was visiting my beloved grandma recently and was choking a lot and could not hide the heartburn coughs and deep burps. My grandma and aunt insisted I take Gaviscon regularly the entire week I was there and forced me to lay down often. I felt like a failure as I was going to Grandmas to work, and while I did get a bit of gardening and organizing the house in while my husband and children took on major Reno’s …I was mostly the organizer, decorator and boss…and the one who could sit and visit. (Which I should be used to by now but sometimes I still feel a bit inferior - like I COULD do more.) But each moment with my loved ones was precious too and I’m grateful they also took care of me. 

- magnesium baths that soothe pain points.

- a physiotherapist who is a natural healer and enables me to walk instead of be in a wheelchair. 

- a naturopath whom I anticipate seeing in a week whom often gives me pieces to the puzzle I can’t figure out myself.

- Ferramix even though it doesn’t fully absorb, at least it keeps me semi functional when I can’t leave my house due to bleeding issues.

- Gods timing: it’s not mine for sure, but usually in hindsight I see the why …

-A husband who works so I don’t have to feel my daily restraints and pain and perceived failures at an even greater level. Better still, a husband who believes I do beautiful worthy things just as I am. 

- A beautiful community we can live on a budget in and still thrive. Beautiful surroundings made from sacrificial choices. 

- Good hours (or when lucky) days, when normal life is SUCH a gift! I love it when it’s been minutes or hours when I haven’t thought about my stomach, my pain, my inner organs , fatigue or about choking. What an incredible blessing to go about the day fully functional! To not think about breathing or when the next “attack” or flare will be. To laugh and embrace the joy of BEING. It’s such a gift. 

- Music: from Musgraves to Dolly to Amy Grant to all things beautiful! My current new favourite is Kacey’s 'Deeper Well' album and nostalgic 90s country. I crave down home roots when I am in semi survival mode. 

- My Grandma. We recently drove the 12 hours home from nine days away… I struggled with health the entire time but it was still worth every bit. My Grandma is one of my favourite people in the world ( click here) and each moment with her is a gift. 

- My children. What an incredible blessing to have friends, companions, sharers of beauty and hardship, and grace filled lessons built into three Beings I birthed… yet they bring daily birthings of beauty into my soul. 

- The One Whom Is. Who lavishes Love, even in pain or suffering or when I can't fully feel it. I KNOW it's there. It's a choice to see it. When it comes down it, the Beatles sang it right, LOVE really is all you need. My soul can rest in that even if my body, sometimes, does not. I am not enough, and that is OK. God is. Love is.

Ps paradoxically I also stand by my post about being more than enough - Imago Dei https://worldwecreate.blogspot.com/2015/11/women-like-mewe-drown-oceans.html?m=1

Song Choice: Architect- Kacey Musgraves

Whatever Is Good

Be still and KNOW...

The pattern of fringes hanging off the table linen caught my eye. The diamond shapes were in close symmetry despite the cloth being washed numerous times already. Rainbow reflections from the sunlit crystals hanging from my windows danced over the patterns. My eyes traced the swirls imprinted above the fringe. It was not until much later that I realized I was simply absorbed in the moment. I wasn't thinking of what I needed to do, who needed my attention, or who I felt I should be. I just WAS. My heart was encompassed in stillness. I felt this unexplainable peace (that surpasses all understanding) and an indwelling of gratitude. I was immersed in a simple Holy Hallelujah. I KNEW deep down that I was more than I seemed to be. I was in Imago Dei - BEING God's Image.  

Each one of us is made in the Image of God, but it's easy to forget to REST into this fact. It feels more like a validation of our own being when we are "doing." Not to say that doing is wrong. Doing is beautiful to activate in our human form. But doing is secondary to being KNOWN and KNOWING. Ask anyone in love (not just lust) if this is true. 

Taste and see...

It used to be odd to me that the descriptor of taste is used to see that the Lord is good. Taste? Really? Taste invites most of our senses to be present. Taste is a physical knowing and a beautiful contemplative moment (if it is Go(o)d.) 

An interesting product of secret prayer (not shared) is that there is no one to witness the goodness of God. This communion instead becomes a private, sacred dance. It's a giving and receiving in a profoundly personal way that can not be fully explained outside of the moment. Much akin to the purely erotic (and not the profaned Porneia that Eros is often mistaken for) that symbolizes the joyful union of creation. Private prayer cannot be bragged upon, inflated with ego, disguised as gossip, or made to get a point across. I often wondered why Jesus was often described as "going into a quiet place" just as much as he was described as helping others. I sit in this similar contemplation and the mystical understanding underpins my confusion.

Private prayer is the being still to KNOW. It is edifying, gratitude filling, and often is both comforting and can lead to suffering. Yet, this is the kind of suffering that involves the growth of self. The falling off of old ways of ego that are not good for the self but are strangely addicting. It's the refinement of burning ashes before the Phoenix rising. This beloved mirror shows more of what we ARE instead of simple personhood. This mirror is Divine. This mirror is Imago Dei. 

Synchronicity is no longer coincidence. The fabric of existence begins to be seen on a micro level of divine threads of colours too numerous to mention. Each tiny thread has the choice and potential to walk closer to the larger Divine cohesion in a solid piece of more... or to a frayed, tattered version smaller, less muchier inclusion of that Divine. Deep down most of us want to be the whole vibrant thread but often instead, we choose to be frayed by our own doing.

Is it good? Is it noble? Is it right? Is it pure? Is it lovely? Is it admirable? Is it excellent and praiseworthy?

When the thoughts and actions we have are most of the above descriptors, an odd Presence of peace is within. That Presence is always accessible yet not often accessed. It is a JUST MERCY. A Grace freely given but often not taken.

It seems that the path of least resistance is to focus on the bad, the ugly, the injustice, the profane, the wrong, the disgusting...or if not blatantly focusing on these things, to instead bury ourselves in busyness to avoid. Instead of RUNNING to ALL THAT IS GOOD. 

Advocacy is good but not if it is done while also trying to rip other threads in the tapestry. Action is good but not if we are not recognizing the true mirror of Being first. Being informed can be a part of growing intellect but without Love, without compassion, it's just another empty state of mind. Beauty can be corrupted but why do we run from true Beauty? Why are we not eating the sunrise with our eyes or soaking up the sunset into our souls? Each day we are given little mercies in the guise of Beauty. There is no economic status, personality type, religion, family of origin, sexuality or any other set aside descriptor required to look at a blade of grass or a flake of snow and SEE a moment of intricacy...a gift shared for everyone. ( For those who can’t see there is a gift to feel - or another type of Knowing given.) 

A relationship is with a noun, a personhood, not a verb. Relationships must be put before issues. Whatever is good...think on these things. But seeing Good is almost an exercise in the paradox. It's a trained existence (ironic.) Mystical and practical blend. Becoming is a dance of the BOTH/ AND of life.

Our senses must become attuned. Often, when I think I am misunderstood, an outlier, seen as not welcome to most in my home town, or frustrated at my own daily incapability, I am in an adventure of missing the mark. Even if each of these statements own some truth at times, they are not THE Truth. I am missing the mark of Beauty. I am missing the true mirror. I am forgetting to LISTEN. When I retreat to contemplation an interesting path opens up. That path can wind through months of both agony of refinement and the joy of becoming. Books I never knew I needed show up with truths that soul sear. Seers of music, people and experience join the journey and point upwards. If I listen, I suddenly am a person who is BEING THROUGH the OTHER. Imago Dei. God THROUGH the tapestry of BEING. God encompassed in the threads woven into existence.

Whatever is GOOD. Think on these things.

Song choices: To Know Me- Lauren Diagle ( https://m.youtube.com/watch?v=cWQGJAhjFRc ) Such a gorgeous song! Moved me to a teary state 💝🥹

Thank God I Do- Lauren Diagle (  https://m.youtube.com/watch?v=wfR6XLXRNy0 ) 

 (Verses loosely quoted in this post come from: Psalms 46:10, Genesis 1:27, Genesis 1:31, Romans 1:25-28, Psalm 34:8, Phillipians 4:8-10, Mark 6:31, Luke 5:16, Matthew 1:35-39, Malachi 3:2-3, 1 Corinthians 13:1, Job 29:18, Matthew 11:28, John 20: 21- 22. Romans 15:13)

Recognized and Valued BECAUSE of One of my Worst Moments

 As I walked out the door I heard, "Wait!! I think I know you and I feel like it's significant!" She grabbed the door and I recognized her too but did not know why. We exchanged names but neither of us recognized the other. She tried again, "If it helps I teach nursing at the local college and have been a nurse for years."

"Ooooohhhhhh," I sighed, "If you worked about 15 ish years ago I practically lived at the hospital."

"Really? It must be that...but I feel like..."

And suddenly a memory came to me and I asked, "Wait. You wouldn't happen to be the nurse that held me?" And she finished my sentence, "In the hallway on the floor?" 

Before I knew what was happening she started crying and I was swept up into her arms, "You changed my nursing career! You impacted my life so fully! You left me a note and flowers stating how important that moment was to you. For years I thought of you and have used you as an example of how to follow your heart in nursing. I wasn't sure if I was crossing a line..but I felt so strongly that you needed me but I was unsure even after...and then the next day your flowers and note came to the anonymous nurse who held you...and I cried."

I was still being held by her through this whole dialogue as she was occasionally swiping her tears...to the point that I was tear filled from her expression. I have a terrible memory so it surprised me that I even thought to mention it. It has been so bad lately that I have simply given up on trying to salvage memories and instead I have prayed, "Please in the moment help me to remember what is important to other people or what is significant to share from things I should know." I'm so grateful this moment (however humiliating it was to me at the time) came to me.

"Thank you for following your heart," I sincerely stated, "I thought I was dying that night. I was so depleted from years upon years of being on IV and pain meds through horrible attacks in my abdomen and bad rashes and pain. I was constantly at the hospital and most nurses after awhile treated me poorly and attributed it to hysteria or anxiety but I could not make up the pain. The pain triggered the anxiety. Not the other way around. Years later I was diagnosed by a natural health practioneer with long term Lymes Disease (though not acknowledged by public health), Fibromyalgia from my former Doctor, multiple cycle diseases (PCOS, Andenomyosis, Endometriosis, Chronic low ferritin and Anemia) and finally Celiac. That night was my final straw because I was strung out on fentonyal (which I hated as it made me so loopy) and had been puking my guts out to the point of a little bit of blood coming out plus sitting on the toilet. I was so exhausted and desperate that I took my IV with me out into the hallway, slid down the wall and started bawling...and there you were, with your arms around me and I felt like it was an angel. Later I was appalled at my desperate drugged out behavior but you stuck with me. You gave me hope. You also changed my perspective slightly on nurses."

She gave me another hug and then her mother came around the corner, "MOM!! this is the girl! The girl that left me that note that changed my nursing career!" I recognized her mom too and she smiled, "Hi Kmarie (insert real name) I remember you. I worked as a receptionist at the hospital for years."

A part of myself shrunk inside. Of course the previous receptionist remembers me by name! I did not recall hers but she stated it and it was immediately familiar. I almost can't believe that was my life. Most of the time, if my health is brought up with new friends, it almost feels like I am lying. Because even though I struggle with energy and pain...I learned how to mostly manage my conditions to a degree. The pain attacks stopped exactly three years after my last taste of gluten. I still get them lightly if I accidently get glutened  but it is not near the same as that terrible 24-48 hours of a tight rubber band wrapped around my abdomen to the point that I could not even have a sip of water for a full day. It was absolutely hell on earth sometimes. To hear that I impacted someone in one of my worst moments was both validating and jarring.

I was at my worst on that hospital floor. I am a germaphobe by nature so the fact that I was even sitting on the Emergency room floor says something. I also am not naturally a person who likes to pubicly share my pain or be recognized while I am in a state of duress...so that fact that I was out of my room also shows my desperation. I was stinky. I was pale and shaky. I was out of it from the drugs coursing through my veins ( that did nothing to touch the pain by the way but only made time feel both longer and shorter which made everything more confusing.) I was completely vulnerable and weak...and when I arrived at the hospital one of the nurses gave me the "Oh it's you again" look and treated me with cold contempt. 

So for this nurse to say I changed her at that moment??? That truly testifies to me that sometimes when we are at our weakest, God is there to use us regardless. We are still a worthy vessel. We can still impact lives. We can still be given a different type of strength.

In all honesty, this is a tough story to tell. I was embarrassed to even show up with flowers and a card that was addressed "To the nurse on call Thursday night and the one who held me." I felt that the entire staff at the hospital was mocking me almost. I felt foolish but something in my spirit told me I needed to be acknowledge that beauty. I was taught by my Grandma, who lived in and out of the hospital with Colitis and a bowel pouch and then cancer, to treat those who help with extreme gratitude. She taught me to leave flowers for my Pharmacist, Notes for my Doctor, Christmas gifts for those who really helped me get through tough times... It was not until one of my friends was shocked that I did these things that I realized many people do not do this. And then I felt silly again.

I was between 20 and 30 when this event happened. I will be forty this year. I wish I could go back to my younger self and say, "You are legitimate in your pain. You WILL figure some of this out. You will suffer and continue to suffer with depression due to pain and energy on and off through the years. However, you will find supporters. You will find information. You will find some answers and some triggers. And believe it or not, you will not visit a hospital (besides blood tests and breaking your foot) for NINE years! You will avoid them like the plague instead of running to them! And you will find some angels on earth...

I wasn't going to the event where I met this nurse last week. I was not feeling well (again.) With chronic illness I pick my battles. My son specifically asked me to please try to be with my family...so I went. I was making a hasty exit to go lay down when this lady ran to me and held open the door as I was trying to escape. I didn't feel like talking. Yet, I have often found that in my weakest, Spirit shows up. Or that sometimes when I don't feel I have much to give, Spirit is still given. Or that sometimes someone needs me, even when I do not feel like showing up, and if I force myself to BE present, something magical happens.

Invisible Chronic illness is a tricky thing. I don't like to talk about it anymore yet it is still a huge (mostly secret) part of my life. I look like I am in the prime of health most days, besides being extremely pale for the native blood I have, but with a ferritin of two and a blood saturation of 0.13, that is to be expected. I went through a huge phase in my late twenties when I needed to blog about health constantly to work through the diagnosis process. I feel that is legitimate. Just like I feel this phase of rarely speaking about it is legitimate too. But I am grateful for a few lessons from my weakness.

1. If I have hidden things to deal with, it's easier for me to remember that everyone else has secret struggles. When I am dealing with someone I try to recall this fact.

2. In our weakness, Spirit shows up. A verse that has always been of great comfort to me has been, "Blessed are the poor in Spirit, for theirs is the kingdom of heaven...and blessed are those that mourn for they shall be comforted." There are silver linings in struggle too.

3. Sometimes weakness allows another persons strength to shine. Sometimes our weaker moments can also later be turned into a strength.

I am not glamorizing illness. As I stated, I go through depression dealing with it on a regular basis. I find it tough not to compare. It’s hard for me not to wish I was only tired from a busy life or a bad night and not blood tired ( which sleep does not much for). Yet, I also don’t want to be a complainer or known for “ being tired.” It’s a state that I just live with. Some days it beats me, other days I try to befriend my own Being. I’m this fallen world, it is what it is… but I’m still SEEN. 

My family and I love to watch The Chosen series ( free on YouTube or the App) about the life of Jesus and his disciples. Even if one doesn’t subscribe to the faith, I would still recommend it for its historical accuracy, storylines, and beautiful sets and costumes. Anyway, in season three there is a story of the bleeding woman who I’ve  related to since puberty with my extremely heavy cycles. This woman is ostracized from her family in a time where being alone as a woman is dangerous. She is culturally considered “ unclean” due to the laws. She is anemic and exhausted from bleeding for years. As a desperate attempt she touches the hem of Jesus garment as he’s walking through a crowd on his way to visit a dying sick little girl. Jesus has an excuse to be in a hurry. (The little girl dies but he revives her later.) Instead the lady is immediately healed and Jesus stops and asks “Who touched me?” He knew, but he was giving her a chance to be SEEN and for her to use her own voice. No one, especially a man, would deem her worthy to speak to. Then he calls her “daughter.” This is not creepy but significant because her own family would not claim her due to her disease. She was unclaimed and thus, unprotected. By stating this protective title, Jesus was stating in essence “You are seen. You are worthy. You are protected. You are healed.” 

Maybe it’s ok to be seen and recognized and remembered for one of my worst moments?

I get bleary eyed each time I read that story but seeing it on screen ... I wept. I may not be healed in a huge way, but if I’m honest, I have small ways of healing. I have moments to be grateful for. I’m protected. I have loved ones. I’m valued in some of my communities. I have much more than this woman. But what we have in common is that we are SEEN in what we perceive as our wretchedness… when we are heavily bleeding and hurting and so so so tired… and we are still loved. 

May it be so. 

Song Choice  Woman at the Well (which is a different biblical story about a woman being SEEN):

https://www.youtube.com/watch?v=JVfI1b2aK64

Making ROOM off of social media; The Beauty of BEING

The latest email from Sarah Clarkson, a favorite author of mine, stated, "My soul has been tired and harried. I knew it and tried to give myself space and grace for renewal. But I also understood that I needed to create some structure or healing for myself too. I've been off of social media because of that since Christmas Day. For the first couple of weeks or so, I felt a little disjointed at the lack of dramatic benefits in my life from my fast from social media. But three, then four weeks in, I realized that my mind really was slowing. There was a different pace to my thoughts. I found myself capable of inwardness and recollection that has been really difficult to me for many months... I'm grateful for the space I've gained in being away from social media. It's a tangled world and there's a tension there as I miss the friendships and beauty and connection of that space. I'm trying to think well, pray well about what it looks like to engage in a creative, sustainable way. I'm curious how you think about these online worlds, this tension between connection and quiet. I'm examining that much in myself these days. But also savoring the hush of this break."

My answer to Sarah's question is specific to me, but I am a firm believer that it could be beneficial for probably 80 percent of the population. I also know of others who have a moderated version of social media engagement. They go on for their business for an hour each day, or if not in business, they only allow for a timed check in once a week. Even that feels a bit harried. My answer? Two years ago around this date, I cold turkey quit. My ability to concentrate, feel peace, savour the good life, give my time to friends via text, in my home, or enjoy books, have time for renos, schooling my kids, taking time with my husband etc. all have improved drastically. The beautiful changes in my life are directly in association to how long I have been off of social media.

I miss it sometimes truthfully. Mostly the inspirational part, but I have found myself looking in my direct vision, to the people I love, and also inward for wonder and inspiration. This method is a slow drip of inspiration in comparison to a deluge, but it suits. It took the first year off to learn to sit in boredom again. Two years off, and I realize I am coming home to parts of myself that were alive as a teenager in the nineties. I actually often forget there is an entire new way of Being. When I see the rare advertisement somewhere I will often wonder, "How did they get those personal pictures of those people's lives?" Then I am jarred with the realization of the otherworld online. Where I am not. Where my opinions no longer need to be stated or circulated. Where the quick hits no longer form who I am. I call it the 'otherworld' because it is another form of living- in imagination, thought and mind. It's not all bad, but it's a new frontier, and until it learns to be more civilized, boundaried, and less self-involved, I am not fully interested. Oh there is beauty too. Of course there is! Wherever there is humanity there WILL be beauty. But I think I can find that in other ways. I am compelled by love to choose LOVE in engagement instead of from a distance. There is a difference of people knowing of what I do and being KNOWN and vice versa. 

I miss being involved sometimes. I do miss the convenience of finding book recommendations or quick hit health tips or home decor looks. I can still find those things but it's slower, and yes sometimes even a little desperate, but eventually the right book comes, or a person hooks me up with new health information, or my home ideas come from myself entirely or my personal surroundings. It took months, but I now am involved in life in an entirely old, but new way. Walks are uninterrupted, talks are slow, and my scheduling is flexible. I can make room for the people who need or ask it of me. I always loved that Christmas song, "Let every heart, prepare him room...and heaven and nature sing..." There is a reason this song is titled "Joy to the World." How can we have true depth of joy if we do not prepare room? How can we sing with nature if we are staring at a screen instead of engaging in our surroundings? If we do not make room for quiet thoughts, engage in boredom, and distance ourselves from opinions or news, our vessels become too full. There is only so much capacity of random information that a person can have before burn out happens. We were meant to MAKE, to CREATE, TO BE. We were meant for meals and laughter, heartache shared and tears, quiet contemplation watching a sunset, and finding meaning no matter the circumstances.

I realize this makes me sound irrelevant or old. Frankly I do not care. Although, I did care the first year. Occasionally, when a friend forgets about me because I am not witnessing their life conveniently on a screen, and I do not hear the baby announcement or see the pictures of the latest reno and hear about it from someone I thought was less of a friend that I thought I was, I FEEL it. But then I realize that is probably not the friendship I fully want to engage in. I suppose I have high expectations for those in my life, and for me in the lives of those around me. I want flawed human connection that involves both scheduled and drop in coffee, movies on blah evenings, a shared thought of how to better our lives, confidences whispered about hopes and dreams, and time to just BE. I live my best life when I am engaged in seasonal living. I live best taking a moment to stare at the wonder of the moon, watching the flakes of snow tuck in snuggly on to an evergreen tree or the sun bounce off of my window crystals. In relationships this transfers to taking the time to hear a friend's laugh or woes, even if I had to move some of my schedule around for game/movie/coffee night. Sometimes it means stating a different date because my husband or children need me more. Regardless the season of living ENGAGES.

Guess what? It's surprising how many beautiful souls are around us, waiting for us to take the time. I have adored getting to know those put in my path. I have been surprised by Joy. Surprised by humanity and Divinity intertwined. There is an ebb and flow of strangers, close confidantes and basic friendships that are spread out in engagement, but important in the spacing. For a few long-distance loves, casual texting, sharing pictures via email and personal videos takes longer, but I have built a trusting repertoire, like old fashioned letter writing in the new century that is enriching. It's slower than social media, but it is still using the technology in a moderate, respectful way. My friend Amy and I have never met, but it feels like she lives next door. We met on this blog, followed each other on social media, and when I went off, she texted or emailed, and sent me some of the pictures and thoughts personally. Even though it was more work. Even though it took time. She is one of my soul kindreds. My point is, there ARE friendships beyond media. 

I read recently there is an epidemic of loneliness and depression, even though our world is the most "connected" ever. Distress comes to us all. Isolation can happen in a crowd. Pain is inevitable. But some of this can be redeemed. In fact, all things can be redeemed. Often though, the beautiful redemption of life, comes after a sort of confession, or a realization of 'missing the mark.' I realized I was missing my mark by scrolling through my screen, taking on other people's thoughts and feelings instead of engaging, mulling them over, and discerning what was mine and what it is not of my being. I value Spirit. The Spirit of Life. The spirit of people. The spirit of the earth. The spirit of BEING.

Until recently, I thought contributing to the world was giving much of myself away in thought or reasoning. It's a needed stage in life but I'm happy to be in a new one. Where the cocoon of the womb of secrets is a protected space of belonging. Where rest is flexible. Where relation is flawed but true and those who I take the time for, and who take the time for me, witness the importance of BEING, instead of only being narrated to. There is a two-part dialogue where hopefully, ideally, the other person comes first, and not my words first for them to like with a quick heart of acknowledgement or respond to each and every time. 

I do not want to make any readers feel less than or wrong for their choices. Because we each must face our own behavior, identity and choices...and what works toward SPIRIT (Beauty, Joy and Grace) in one person's life, may not be right for the next person. However, this is my testament to my becoming offline. This is a secret I feel I can share. There is so much more of course. But this behavior change and how I live and what I live for, has changed so drastically. I still struggle. There is still pain and sometimes it's hard not being part of the Otherworld. Yet, the time...the slow gritty transformation, the holy fear, the respect for life... practicing PRESENCE of God and BEING...preparing ROOM, it has been a game changer for myself. Perhaps my story can also give another a reverence for their own choices and a strong respect to make a tough change? Sometimes the harder choices in life become life giving. Saying no to the social media time blocks enabled me to say yes to many in person BEINGS. I have learned to live less for myself and hopefully, ideally sometimes, I can GIVE a bit more...there is hope for so much more. 

To the Beauty of BEING and Preparing ROOM

Song choice: There is JOY to be found so :

https://m.youtube.com/watch?v=-OJSZLHTk-8

I find specific country music helps me value the small, beautiful things in life ( the songs about family, children, country, nature , God… the lyrics can be fun or ridiculous or just full of the wonder of life moments…here are two of my playlists…)  I used to share an account with my daughter and make a lot of playlists on her account but then I got my own and just added to them - thus the two names on the playlists ;)

 Country Mix 2021/22
https://open.spotify.com/playlist/7utmVp7TrdkPQPqQRI9CYt?si=qYIh_ey3SmitRq30GMQLtQ

90s country
https://open.spotify.com/playlist/5q6EcIDLDP47RWafgb7DGe?si=bvFmhXOCTc22wlvSObJEFQ