ALS (Lou Gehrig's Disease)

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    Why Growing Up Is Difficult As An Autistic Person

    Part 1 of 3 My name is Anthony, I’m from Vancouver, BC Canada. I’m 28, but still that kid, childlike wonder in my heart. We have a little Peter Pan in our hearts, don’t you say? Yes, I heard there’s hilarious roasting between Millennials and Gen Z ha ha ha. I’m a Millennial kid, surviving the horror invasions of Generation Z. I can’t believe my generation’s getting roasted by the Gen Z kids on the block. No using the word adulting. No showing off Hogwarts houses. No 90s nostalgia references. What?! No references like YTV hit shows like Digimon, Freaky Stories, Uh-Oh, Stickin’ Around, or Hit List? No skinny jeans. No laughing, crying emoji. No saying, “I did a thing!” Why?! Oh the horror! The horror! Gen Z, you’ll never take me alive ha ha ha. Well, here’s a secret. I do have a soft spot for Gen Z—no hard feelings, ha ha ha. As age comes in the way, I know my generation soon is ending. No, the millennials are facing the apocalypse! Gen Z is invading the Millennials. Gen Z, wish you the best and make your mark. I’m curious about what you’ll bring to the world. YOLO! Is that the word? Did I say it correctly? Is YOLO part of Gen Z? Anyways, aside from the jokes, growing up is a huge bite for me to swallow. Sometimes the taste tastes bitter. There will be lots of obstacles. Growing up as a person living with Autism is not what it expects to be. Friendship is not always genuine. We lose our innocence as we get older. Nobody cares for you except yourself.

    The epiphany from childhood to adulthood still plays an important role in my life. This is part one of it. How this epiphany affects friendship. When you’re a kid, you would think innocent and think the world is all sunshine and rainbows. When you’re an Autistic kid, we would get emotionally attached. Flexibility is hard to come across. When I was a kid, I remember all of my elementary school teachers were concerned about me spending time alone everyday. Don’t get me wrong. My teachers were all amazing and I love every single one of them. I still appreciate what they taught me. Of course, we are all humans and we all make mistakes. Just because you’re a teacher doesn’t mean you know everything and that’s okay too. We have to forgive our mistakes. Going back, they noticed I don’t have friends. I prefer to be alone. To me, I’m not bothered, but to them they were worried, especially my parents. As time went by, I became used to the idea of “having friends is great. It’s not good to be alone. Having friends is teamwork.” Because those teachings had implanted my little noggin, I took friendship seriously. I became used to it. During the years between adolescence and now, the friends I know from before outgrown themselves. Not all of them, but some. Some were the same and some were different. I wanted to say hi to them, but I didn’t hear from them. Some had moved on. They didn’t want to be friends with me anymore. Because you have Autism, what happens is because you internalize friendship, you may think that friendship is forever. Unfortunately, some people will backstab you, betray you, or even pretend to be your friend. Nobody told me earlier that it meant not all friendships to be genuine or forever. At that moment, I was shocked. It hurt me when I realized that. However, as an adult, I also realized I did too have a fading out friendship experience. Our fading out began when I was twelve years old. I used to hang out with a close buddy of mine back then when we were kids. We were childhood friends in elementary school. My buddy was very nice and fun to hang out with. We used to go to each other’s houses and play. We even had snacks together, watched TV, or played video games. My buddy was also my neighbor. I also learned about my friend’s culture too. My friend’s family is delightful too. They were such a heartwarming family. The time I found out my buddy moved away from Vancouver, our reaching out fades. In a moment of realization, I found out our friendship faded as well. Both of us had our own lives. Even though it faded, I am always grateful and always thankful for my friend and my friend’s family for having wonderful memories together. Those precious memories we had growing up meant a lot to me. Wherever my buddy is now, I wish my friend and my friend’s family all the best and with good vibes. I want to thank them for being my neighbors and for being so wonderfully kind and sweet. I’ll never forget that. How come as kids friendship is important but not important anymore when you get to adulthood? There was a conversation that made me shocked and confused. But, better to tell the truth than to lie. Two stories about friendship came long on pop culture news. In a pop culture interview on YouTube

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    Why Growing Up Is Difficult As An Autistic Person

    Part 2 of 3 , this actress had a comedy show. According to her perspective (as I don’t want to judge that person and I’m aware of not knowing the complete story behind the scenes), this actress owned her straight forward truth. Herself and her co stars are not friends than their characters on TV. Again, those are from her words and her own perspective. What’s funny is these main four stars, their characters are friends but in real life they aren’t. When I heard about it, I remembered thinking to myself, “That was disappointing! Why can’t they be friends in real life? It’s not fair.” But then, I realized, you can’t please everybody. Things shouldn’t be forced. If you’re going to force a #Relationships, it will never work. It’s better to be natural than to please others for the sake of them liking you even though you hate them. The last example. You might heard of this group, it’s a pop group during the early 2010s. On screen, they’re likeable with great catchy tunes. However, most of us did not know what was going on off camera. Rumours have it, but I’m not sure if it’s true. Rumours have it that all of the bandmates didn’t get along well. Rumours say they disliked the music they’re playing and they don’t liked each other. No matter what if the rumours are true or not, have you ever thought to yourself, when this kind of news media spread, you felt betrayed and it’s not honest? I’ve learned that friendship become less important when you become an adult. It’s up to you who you want to be friends with. Because I implanted the friendship conversation literally, I wished everyone would be nice. Why can’t we just get along fair and square? But the cold hard truth is not everybody will like you. It’s sad, but it’s the truth. No matter how kind you are, you will always be evil in someone else’s story.

    Remember in the John Hughes’ movie, The Breakfast Club? There was a quote that resonated with me. One character from the movie said, “When you grow up, your heart dies.” Innocence fades slowly at a time. 28 years. 28 years of having a clean mouth. I never swore in my entire life. No F bombs, nothing. You may think I’m lying. I ain’t lying. I never, ever, swore in my entire life for real. Period. Well, okay, I did say a bad word one time but it wasn’t a swearing word. It’s from a conversation I had with my grade three teacher who I admired. She was compassionate and kind. Unfortunately, my former grade three teacher passed away from #ALSLouGehrigsDisease three years ago. I still miss her dearly and I always have a special place for her in my heart. Going back to the conversation I had with her, this is what happened. One time, I accidentally slipped out the word, stupid. I heard the word stupid when I copied it from one of the greatest animated, cartoon shows I watched, Wallace and Gromit In A Grand Day Out. My teacher was disappointed with me. She was upset. But she reminded me in a soft gentle tone. “Anthony, please don’t say that word again.” I actually was upset at myself when I said stupid. I was taught to not swear. I forever kept that promise for my teacher even today as a so-called adult. Now, this is the part when my tables have turned. Recently, I hear lots of people swearing and most of the time, they weren’t even offended. Even supervisors and employees also curse. In reality, cursing is not appropriate at work especially when a supervisor is supposed to set a good work etiquette example. Pretty bad especially as a professional. But, of course, we tend to slip out those moments when we get too carried away. It happens at times and we ain’t perfect. That’s okay too. Leaders are supposed to be suitable role models. There was an article I read online about swearing. When I read it, it shocked me. The article talked about why swearing can also be good for you. Here are some benefit examples. “It helps us express our anger healthier.” “It tells them the truth.” “They fight for their rights.” To be honest, this article has some pretty spot on points. If we were told not to swear, how come right now it’s more acceptable? I was very thankful I had a lot of outstanding teachers who helped me and taught me to be kind. I will always be grateful for them and I know they did the best they can. To me, I wasn’t taught that being too kind can also not be a good thing. Autism gave me a superpower of kindness. It’s one of my greatest strengths but also can be my greatest weakness. Individuals living with Autism struggle often in morality. It’s also known as moral blindness. Ther

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    Courage, Self-Love and Complex Trauma or CPTSD

    Part 1 of 3 Finding courage and self-love while living with complex trauma

    Part of the reach of HeartBalm is to speak on the topic of complex post-traumatic stress disorder, also referred to as complex trauma, its splintered and related themes and challenges, and directly to those that are dealing with this multifaceted condition. Complex trauma is an amalgamation of long-term abuse and neglect, and therefore when trying to understand a traumatic past from an adult perspective it reveals itself as a confusing mosaic of multi-layered events, scattered along our timeline from the non-verbal stage of life to the adult now. It is only when we can begin to join our awareness of what is arising, and be with dissociative episodes and flashbacks with compassion and self-love, (and without self-criticism and judgment) that we can begin to find a finger-hold on mitigating and understanding complex trauma, and how it is infiltrating and affecting our lives.

    The definition: Complex PTSD happens in response to chronic and repetitive neglect, emotional, physical, and/or sexual abuse, usually occurs in childhood and is typically deeply interpersonal within the child’s caregiving network. The child has no way to escape, or survive without the parent(s) or caregiver(s), and endures a cruel and imprisoned world of abuse and neglect with no empathetic witness to help or validate the child’s feelings or what’s happening. Often siblings are recruited as proxies to the abuser(s) adding to the vast interpersonal web of perpetrators. The child alone in this situation can endure predatory behaviors such as: scapegoating, gaslighting, stalking and bullying, humiliation, neglect, physical and sexual abuse, withholding of love and attention, making love and affection conditional, and total invalidation of the abuse, and needs of the child. The child has no safe space or family member to retreat to which increases the view of the world that the abuse will never end. Because the brain is still developing and the child is just beginning to learn about the world around them and who they are as an individual in that world, as well as developing first relationships – severe and repetitive trauma interrupts the entire course of their psychological, and neurological development.

    When you’re born in a burning house, you think the whole world is on fire. But it’s not.

    _Richard Kadrey

    The child who endures this type of trauma begins to cope by going into survival mode and developing deep-seated survival strategies such as giving up and losing their sense of self to try and find a way to appease the abuser(s) and mitigate the trauma, becoming highly adrenalized, hypervigilant, hypersensitive, and hyper-intune to the harasser(s), the environment, and the telltale signs of looming abuse. The child’s brain begins to develop entrenched neural pathways that create survival mechanisms that become the first responders to recurring traumatic events, and the brain is left to fracture and compartmentalize to save and secure the parts that need safety and protection, as well as create parts that mirror the abuser(s). The child’s mind only knows survival under these circumstances. Logic, understanding, reasoning with the perpetrator(s), or speaking to another adult about what is happening is not an avenue for a baby or young child. There is no concept for anger, hatred, being abused, or neglected from a child’s perspective nor the ability to describe what is happening – the only understanding is confusion and the downward spiral to self-hatred, unworthiness, feeling unloved, unloveable, disconnected, separate, unwanted, and constantly under threat. This is the primary reason why abusers choose children because they are easy targets and there are generally no witnesses, or the mechanisms in place to fight back, understand or escape. As the child grows the brain is set up for survival and begins to meet life from this debilitating place of untrustworthy broken relationships, lies, betrayal, lack and scarcity, shame, low self-worth, and a menagerie of inner self-critics on steroids.

    Self-hatred is only ever a seed planted from the outside in.

    _Hannah Gadsby

    The adult survivor therefore must contend with a brain that is still functioning through the lens of survival, and continuing to meet life and all of its challenges and burdens with the limited scope of survival strategies, avoidance, and fear of connection to others, overwhelmed by a nervous system caught in fight-flight mode, and trying to make sense of a patchwork of years of trauma. The healing journey for complex trauma is not an easy one. Finding the right trauma-informed therapist or mentor can help, and having trustworthy friends or loved ones to reach out to that can hold the space for you and love you through difficult times is als

    Question
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    What’s been your experience with dining out as a disabled person?

    The unfortunate part about being disabled is that this world wasn’t made for us. It’s not a slight, it’s just a fact. The way we navigate life is naturally different, and accessibility looks drastically distinct for each of us.

    So we’re curious: If you are physically disabled, what have been both your positive and negative experiences with dining out? If you use a wheelchair or mobility aid of some sort, would love to hear your thoughts as it relates to that as well.

    ✏️ P.S. Your response may be used in a Mighty editorial story!

    #CheckInWithMe #Disability #DisabilityAdvocacy #Advocacy #MultipleSclerosis #ChronicPain #ChronicIllness #CerebralPalsy #ALSLouGehrigsDisease #ParkinsonsDisease #Diabetes #EhlersDanlosSyndrome

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    4th of July is no longer a celebratory day. It’s now a painful reminder of the passing of my oldest sister!

    In early hours of July 4, 2019 my oldest sister passed away after a courageous fight against ALS. She was only 50 years old and the disease attacked her so quickly that within 18 months from being diagnosed she died from complications. I was her primary caregiver and despite my own health challenges I gave all I had to care for her until her final breath. It took a toll on my marriage and it was so painful for my daughter to watch her favorite aunt slip away. Since that time I have been into a deep depression and it has taken a lot of therapy and help to work through everything. This holiday will never be the same and it will always be a harsh reminder of the void this is left in our family and in our hearts. #ALSLouGehrigsDisease

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    Liver issues

    Was misdiagnosed with MS and then ALS in the early 2000’s. Had classic signs of Lyme 1999, was told no such thing as chronic Lyme. Destroyed peripheral and autonomic nervous system. Now being evaluated for autoimmune hepatitis with liver failure. Properly diagnosed 2004, treated with long term antibiotics, have relapsing and remitting periods of flares.

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    Loss of my Husband

    I lost my husband on June 2nd last year and the grief ebbs and flows.

    Sometimes it is so hard I just don't want to get out if bed; I have to force myself because there responsibilities that I can't ignore they have to get done and I'm the person that people count on me being there.

    Being busy prevents me, most of the time, from grieving, crying and feeling the pain; it allowed me to place my sadness and tears in the back of my brainf

    I haven't found myself angry with God for taking my husband, I actually feel blessed that my husband is no longer in pain.

    My husband hated his life he would constantly explain that noone should live like he was living.

    My husband had ALS. When he was diagnosed, we were forced to realize that we now had a "timeline on life" 3-5 years, (based on the current studies)

    He loved RV'ing and Boating and just doing things with friends, skiing, bike riding playing golf, fishing, having parties with people enjoying our pool and hot tub and BBQ'ing.

    Things like this forced us to come to the realization that the disease was real and that he was dying.

    Friends began to slowly disappear the more the disease progressed the less we saw friends that we would see weekly, the invitations to go places or do things with were no longer offered.

    It's funny the disease, ALS, not only took things from Don they also took things from me

    Now I'm forced to deal with the loss of half of me, "MY"i lost identity was also lost. For 34 years it was always Shaun and Don or Don and Shaun. No it was just "Shaun".

    I lost the same things that Don lost. Most importantly I lost the friendships that we shared. I was now the 3rd wheel the constant reminder that Don was no longer around.

    Now I'm alone, I miss the times that he showed me how to do things. Now I am forced to figure out on my own. No longer do I have my constant complain, the finisher of my sentences. How he would answer a question before I asked it.

    Before he passed he said to me that now it was my time to take care of myself. But, how do you go on.

    How can I take care of "ME". I don't know "ME" is.

    I'm forced to live me life in a fog. I can't remember anything. I don't enjoy the things that I used to enjoy. I don't know what I like, or what I want, what I need. I'm now living life with a constant reminder that I need to find "ME".

    I'm scared.

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    Tired (part 1/2)

    I am tired. Tired of sleeping. Tired of not being able to sleep. Tired of oversleeping. Tired of waking up in pain with no strength in my limbs, shaky hands, and poor coordination. I know what I want my hands and feet to do. I know they CAN do it. They just won't.

    I am tired of my brain not functioning. It is a good brain. It can remember and understand many things. It can process complex thought. Heck, it can even do math (sometimes). I am tired of it being shrouded in a fog so thick I can't comprehend the written word, or remember, well, anything I need it to (words, things I need to do, the fact that I'm cooking . . .).

    I am tired of the migraines that accompany every low pressure system that rolls through. Tired of not being able to enjoy these fantastic fall thunderstorms (some of my favourite weather).

    I am tired of not being able to do my own groceries. Tired of missing grocery pickup times because my body or brain said no to driving. Tired of struggling to do simple chores.

    Tired of feeling useless.

    Tired of this invisible disability that even I struggle to accept, much less anyone else.

    Tired of the hope of getting better one day. If only I try this medication, or that supplement, engage in a specially designed physio program. Tired of the expectation others have that I can/will get better. Just because my disability isn't obvious and the causes of the disease(s) remain a mystery doesn't mean I'm any more likely to 'get better' than someone else is to regrow a lost limb. (OK, maybe one day, when science better understands my diagnoses. But then they're working on limb regeneration too.).

    Tired of societal double standards (and I include myself in this unhealthy thought process). If you hear that someone has MS, CP, Parkinson's Disease, ALS, MD, or Alzheimer's you don't expect them to 'get better'. You probably hope for a treatment that manages their condition, keeps any degeneration at bay for as long as possible, you may even donate to funds that sponsor research into potential cures, but you don't expect any sudden reversals in ability or condition. So why is it that when we hear that someone has fibromyalgia, ME/CFS, lupus, POTS, lyme disease, or any of the myriad other less understood, less known, invisible disabilities we expect that there's a 'cure' out there? Something that will return our loved one/acquaintance/coworker to their previous selves?

    I am no exception to this rule. I know I am disabled. I feel it every day. If I had been diagnosed with MS like an old friend of my mother's, or one of my favourite teachers, or with Parkinson's like my father I wouldn't be reaching for cures, I'd be looking at management strategies. But because I've been diagnosed with fibromyalgia, ME/CFS, and POTS (among other things), I am still searching for that miracle that will let me resume my previous life. Something, anything, that will let me be 'normal'.

    #ChronicIllness