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

About Rare Sensory Deprivation In Autism. AKA Robot Mode. About Inclusion Pressure.

This was originally supposed to be part of the Sensory Link Blog Hop. It is hosted by the Sensory Spectrum and the Jenny Evolution. Unfortunately, my link and html codes are bing wonky and caused my blog to host pictures on the wrong side and my font went crazy. I had to re type this post. Here are two post links involved this month:http://fullspectrummama.blogspot.ca/2018/03/awareness-acceptance-inclusion.html

https://www.sensoryfriends.com/disability-blogs/disability-and-sensitivity-awareness-is-a-must-for-creating-inclusive-classrooms

I have explained sensory overload in posts or aspects of sensory sickness, but there is another side of the sensory coin. Our family has dubbed it 'Sensory Deprivation Robot Mode.' My children have had lesser versions of it. This mode can be accidental or intentional. I can cause myself to go into this mode when something requires my full attention or when I am enjoying myself or when there is an emergency that pulls at my focus. Usually four factors have to be involved to access this automatic pilot of mine.

4 Factors that Help me Engage in This Mode  (when I intentionally wish for it by CHOICE) Are:

1.) Having an activity that lines up in my obsessive interests which requires a chunk of time. For myself, decorating, writing, making videos, deep cleaning ect. fit into this requirement. There are also activities like shopping that I do not enjoy, where I force myself to shut down a bit to get it done. This is another form that is less fun, but enables me to do the job efficiently for short periods of time.

2.) I need at least enough sleep to muster up this obsessive state in the first place.

3.) I require a stable stomach. I am not able to do many activities if my gut is off.

4.) Sleep and my wake up routine need sufficient honouring. I need to be able to wake after a decent time.  THIS ARTICLE  states that some people need their sleep in the morning. I am one of those people.

If these 4 points are met, I am able to shut down my extra sensory for SHORT periods, to an extent, or more accurately, my body just shuts down on it's own when I am in an activity that is obsessive. I now try to recognize it and make it work for me.

An Example of Going into Sensory Robot Mode:

Last spring, I helped set up a new shop a drive from where I lived. I had always wanted a shop of my own, but after the experience, even though it had it's moments, that desire has been squelched. I witnessed and aided with inventory, wholesale merchandise, vendor finding, setting up and moving product and shop design under a minimal budget.

On the morning of opening night I arrived to find the shop in disarray. The shop was located in two large garages opening to the outdoor space. One garage was stuffed while the other had not even been set up. Because I had ended up in ER the day before due to an allergy to some soaps, I had to leave a team of volunteers, who tried their best but were not gifted in this area. I had six hours to set up BOTH shops in a way that worked. Because of my allergy, I wore surgical gloves and my body was covered from head to toe. There was no air conditioning. Red sand blew in on the cement floor when a light, desert ish, breeze would pick up. People were sweating amongst the Hoodoos in tanks and shorts. The arid wind blowing across the sandy coulees created quite the dry heat. And I was dressed for pre winter.

Luckily, I had my children, mother and aunt to aid me. I began immediately barking out orders due to the time crunch. Items still had to be priced, entered in inventory and set up. I delegated, then entered my own world of quick efficiency, because my team was doing what I asked. (My Aunt was in charge and the go to girl for all the important questions.) I did not surface until my mother forced me to eat at 2:40 after the team had eaten and brought me back something. I had not gone to the bathroom, eaten or drank much at all (which is a mistake that I seem to always make.) I quickly wolfed down my food in an air conditioned car, because my mother forced me to, and then I was back at work. Both stores were set up 15 minutes before they were opened.

My aunt called me a "Tornado." My husband says I am a whirling dervish when I know what needs to be done. I am quick and don't stop moving until I am FULLY finished the task at hand. "Ain't nothing gonna break my stride...Oh no! I got to keep on moving!" (*1)

Looking back in the car ride home, I realized I had not registered the plus thirty Celsius temperature that was accentuated in the Valley. I didn't realize my shirt was soaked or that I was overheated. Which is an unfortunate aspect of this Sensory Mode. I began to feel all the muscles I had used. I felt thirst and my inner organs rebelling. I felt the exhaustion of Anemia/ Lyme and the Mono I was fighting at the time. I had pleasant thoughts of a fluffy bed in a dark, cool room and a dripping IV (well, only the thought of instant hydration and not the actual IV process.) My legs were trembling and my hands visibly shook. I could not even open my own water bottle.

After I have shut off my sensory process, and it all comes tumbling back later, it can be amusing to go from incredible feats to the sudden inability to open a container. It blows my mind, so I can not imagine how it must look to anyone who witnesses the process. I must look like I am acting. (*2) My voice went from raspy to an inability to speak. I couldn't recall exactly what I had done but I knew it was good considering what I had to work with. I knew the next day I would not be able to get out of bed. I would need to crash.

Crashing involves regulating my body temperature by crawling into bed with no sensory stimuli. No TV or any noises are allowed. It involves a dark room with silence. Sometimes, after an hour with no sensory stimuli, I can chat or watch a show. I am often in pain or feel like I am coming down with the flu, if I have stretched myself in a temperature de regulating way. At the time, I was unaware of these factors. I just had a job to get done.

I prefer entering this mode on purpose for something less demanding, like writing, or decorating for short spurts. But sometimes life requires me to shut down just to get through. Which I dislike, and I try not to do often, or sometimes do not even realize I am entering this mode, until way later. My family has learned to help bring me awareness because at times it can be dangerous for prolonged periods. If I enter this mode intentionally, I usually set a timer or tell another person so that I will be pulled out of the activity at a reasonable time...because I could probably forgo the bathroom all day...which isn't something that is good.

Sensory Deprivation Robot Mode Summary:

This mode is when my brain, intentionally or unintentionally, ignores the sensory stimuli it is normally overwhelmed with. It is like I have pressed a button and become the opposite of what I usually am. If it's intentional, I have to pace myself. I can only sustain this for a few days at the very most, but afterwards I am typically sick, if it involves being physical or out of my home.

Those who witness this process are often perplexed. My husband realized long ago, that if I intentionally enter this mode, it is important to honour it. Even if I seem unreasonable to a degree. Sometimes, it is nice for me to get a lot done, in a short amount of time, and not be overloaded with the usual stimuli. I like looking back at what I accomplished without some of the usual human need components getting in the way. I know from feedback, that I can do in a day, what some people do in a week in this mode. It's like a superhero button on my functioning, when it's a choice. My husband calls it part of my 'Athena Mode.' I like feeling capable sometimes because often capability is not my forte in the physical realm...due to Dyspraxia and Chronic Illness. Sometimes it is nice to occasionally succeed in area perceived as weak.

My mother texted later that evening;
"Your aunt said that after Tornado K the store looks great. She said she was amazed, flabbergasted, appalled and in awe that you got all that done. Using her words. She said maybe it is good thing you are sick because who knows how you would be if you were not. She asked me, 'Can you imagine? She is a tornado! Talk about amazing. She could conquer the world if she wasn't sick.' Needless to say, she was impressed with everything you did. She said she was stunned you got it all done. She said that was so much work, especially when a person is sick."

I was happy she noticed. I have been sick since I can remember. Coupled with sensory overload and multiple disabilities life can get tricky. Plus, I had Mono at the time. In my life, I have good days, normal days and more often than not, very bad weeks. There are many factors that play into the normal day to day but for a person with said conditions, these factors should be multiplied by ten at least. Thus, I have always had the mentality that if I feel good, I should savour it, do what I enjoy and occasionally I chose to embark on something that is a huge undertaking. At other times, I shut off to survive. I prefer the choice factor.

I used to make the mistake of entering this type of zone a few times a week. School required me to be in this mode almost every day. It is a wonder I did not skip as much school as I did. After school, it was a NEED for me to have at least an hour of chill time alone in my room, decompressing and healing with music, sprawled on my floor entering a dream like state. This mode should not be a regular routine. For one, it can be dangerous if a person is unaware, but for another it still requires payment later. I prefer the lower versions of this mode that are simply "being in the zone" but in a safer environment, like my home, where I can engage in changing a room around, writing or making a video creatively without too much damage. Even if I do disappear into my own world for hours. In this case it is sort of like being lost in a book.

When I am in these zones, bodily awareness does shut off. Thus, my husband will often ask, "Have you eaten today? Drank? Gone to the bathroom?" I barely acknowledge him, and he tells me he leaves and comes back 15 minutes later with the same gentle encouragement to take a break. For myself only a few seconds have passed in my mind. He also is aware of my body temperature. I will not notice, even if I am actually in pain from being frozen, that I am cold. Or if I do, it will be a nagging feeling in the back of my head that I have no idea what to do about, until my husband puts a blanket on me and exclaims, "Babe, you are like ice. At least put on this sweater." I will look up blankly, apparently with eyes unfocused, murmur, "ok thanks," and get back to my work. His chuckle will barely register in my brain as he walks away, but later, looking back, I will remember and register that detail. When I am out of the zone, I become appreciative of his gestures. My daughter has told me, " Mom, I know that the only way to get your attention during these longer blocks of time  is to either play music you like or be extremely nice and talk an octave higher while playing with your hair or gently rubbing your arm. Then you will look like you suddenly came out of a trance. You will be surprised I am standing there and ask how long I have been waiting. I find it funny." (I do not do this if there is an emergency requiring my attention.)

My family generally respects the time I spend in 'Deprivation Mode.' They know I will get cranky if I am pulled out too soon. They know that everything I have deprived myself of WILL catch up to me, so they do keep an eye on extreme behaviour, but allow me to do what I need to do. They also realize I will have a 'useless' recovery phase but what I do during DM more than makes up for that. My son has told me he likes it when I am in recovery because we can chat, read or watch TV together.

When I do show up, in a way that requires a lot of energy, I want people to recognize the feat. I want the world to know that just because I am disabled or sick on many days, that it does not mean I can not occasionally show up and accomplish what most would do in a work week, in one day. Hubby hates it when I say, "Ok Time to work!" This was especially handy when we were doing Renos. He knows what I can do in a short time span, will require him to step up his game, and I will still beat him, time wise. However, he does the day to day work I could NEVER keep up with. His job would be my death and I would cry within in hour.

In Summary:

The day after setting up shop, I could not remember details of the previous existence. I recalled a few shelves I re arranged. I remembered the comments to my amazing children of, "Where did you learn to work like that?" And they replied, "When mommy gets in this mode, we know we are required to be fast, efficient and give our best. She will reward us. We know to take breaks." I remind them before a big task, to take bathroom and drink breaks. They are not supposed to even ask, just to go fill their needs, because I may not respond. I think that is another reason why the early years, of them being under six, was so hard because I could not do this. I had to force myself to be hyper aware just to be a present parent. It was exhausting and demanding and not my natural way of being. Now beyond six we have found our groove for all our varied needs. They know on big chore day, grocery shopping, or seasonal changes (which usually take a few days of moving furniture and product in our house while deep cleaning) that they are required to help without complaint. They know they will be rewarded somehow. They tuck in through the storm because the more I am interrupted, the longer it will take and the crankier I will get.

Occasionally, I appreciate 'Robot Mode' because of what I can look back on and see accomplished. It feels like it makes up for the days I can not do much of anything. If I am unaware I entered the state, until I look back later, I can feel guilty or upset. But when it is a choice, unlike most sensory overload, the intentional deprivation can be a nice break. I may not hear my body's needs during this time but sometimes that is a welcome relief. I am constantly in dialogue with my body's overdrive, exhaustive, unique needs. It is nice to be able to shut this down while I get something I want to do, done. For a few hours I will feel almost 'normal' in what I can do in comparison to our unbalanced "get er done" culture.


I believe my way of being teaches different lessons. I perceive different truths by being limited in some tasks. I make differing life choices because of this. As Temple Grandin says, "Different not less." My experiences are valid, worthy and most of the time, I would not trade them in. There are occasions that I am appreciative of the word 'capable' in a physical sense, but I don't want the word 'capable' to become something that equalizes me to the rest of the world. It would be too hard. That is not inclusion or equality. It is having a high standard that makes those with disabilities feel even more pressure and inability or inner stress. I don't want the same opportunities. I want the ability to be ME, and have it recognized as legitimate and equal in the way that it is different. That is how many people feel on the scale, but those who advocate for us with the best intentions, often forget. I also feel, that 'Robot Mode' helps me break my own moulds of being, and it stretches, and grows me. It reminds me that I am not fully limited in every area. Sometimes I break the rules of Being Autistic or Normal or 'Being' one way or another. That is ok. It's healthy to have a perspective taking experience.

I am curious if any other Autistics who are not SPD, and regularly have sensory overload, also experience this? Most people have moments when they can be 'other worldly machines' on occasion. This is simply magnified for me. I need these moments, in balance, to feel the full scope of who I am.

For more on Sensory Overload:

 http://worldwecreate.blogspot.ca/2015/11/explaining-sensory-sickness-and.htmlhttp://worldwecreate.blogspot.ca/2015/10/sensory-overload-on-holidays-like.html

(*2)- I am a good actress but ONLY when it comes to pretending to be normal in short circumstances or pretending to be healthy. It is the only kind of "pretend" I do, because I believe in authenticity and truth too. The exception to this is my harmony driver in my INFJ personality. If a situation requires harmony for me to chameleon or become "normal" for short situations to make everyone comfortable or to take the pressure of explaining, off of myself or family, I will do this. I DO pretend for most extended family events, suppers, and get togethers to a degree. I am still quirky but I restrain myself about 70 percent. I do not feel this is wrong because I know who I am and what my limitations are. I also have safe places where I can be 100 percent myself regularly. Different circumstances require different aspects of self. I also know that this is just another side of me that I am tapping into. Yes, it takes a lot of effort, but I will not explain myself unless it is in writing or a situation deeply requires that measure.

Song Choice: Break My Stride- Matthew Wilder (*1),  Fox on the Run- Sweet