Epilepsy

Something illness related I had to learn this year was to swallow my pride and use mobility aids .

I use to RELISH in the fact my illness was invisible.

I flat out lied about it to friends and family for YEARS and when the news of my illness was ( for lack of a better word ) “leaked . I had immense pride when people thought I was “ faking it “

But as I’ve gotten sicker .
It’s gotten impossible to hide .

For 4 years I’ve had to use supplimental oxygen.
Since Oct when I’m out and about I’ve been reliant on a walker .

And it’s so , emotionally difficult.

It got to the point where I realized I walked looking down . I didn’t check out the cute guy , because “ who the heck would be checking out the girl
Who looks like she is dying “

And then when you add the pity stares , and the completely Inappropriate comments

( like can we make it a rule of thumb to not ask strangers their life expectancy , or tell them how to fix their health )

Sometimes I’ve just wanted to crawl in a hole .

But when I realized the walker was going to be a longer term thing than expected. I made a goal to keep my head high every time I walk it with it ,

When kid give me questioning looks , I wave hi to them and give them the biggest smile I can.

And when I get comments from others talking about themselves with their kid / friend / spouse with oxygen or mobility aids .

And or comments online about how seeing me out and about helped someone feel confident leaving their house with their oxygen or walker .

It means everything. .

I’ll admit it , I’m vain .
I love hair , I love fashion I love makeup . ( I actually really enjoy getting ready )

I love that I’m 6”1 with giant lips and big green cat eyes .

And I a lot of days I deeply struggle with what illness has done to my appearance

But I’m so grateful that illness has taught me that I’m so much more than what’s on the outside ❤️

Through this year of ups and downs , what’s something rare disease / chronic illness has taught you ? #RareDisease #CVID #Epilepsy #MCAS #AutoimmuneDisease #Spoonie .

Simply remember or find/Google/ask Alexa or Siri……a line or part of a line from a song or a song title that was written for Empowering all of us.

You are welcome to add in even just one. This is easy because it is not even your words that you are adding in or articulating. The words have been given to us.

For example: I often think of this part of line from a song: “I am going to dance on broken glass.”

And this part song title, part of a line of the lyrics:
“Better Days are coming, if no one told you.”

And this longer one section of another great song:
“DON'T YOU TELL ME WHAT YOU THINK THAT I COULD BE;
I'M THE ONE AT THE SAIL
I'M THE MASTER OF MY SEA.”

And this small section of a song that I hold close to my heart:
“Just remember who you are; how you were never one for folding; how you never liked the corner; how the dark don’t even know you.”

Let’s Go Big on this one.

Let’s make this a holiday gift you can give for free that could be exactly what Many others need Right Now.

This ties in with the image I chose for this because we are going to be taking inspiration from Christopher Reeve aka Superman in the 1978 film who famously said "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles".

So, I say YOU are a hero.

One of our Mighty family with a boatload of reasons to question this quote and anything, just a couple days ago, found, and in a way, smartly challenged my about 4 months old post with Christopher Reeve’s other famous quote “Once you choose hope, anything is possible.”

So, if you know anything about me, you know I accepted this challenge to help her and to help even more of us.

So I went to work for all of us— researching and drafting an impactful reply (and I can at times put hours into this work for all of us.)
Because YOU are worth fighting for.

So, I researched how he could say these profoundly optimistic and empowering statements when he, Christopher Reeve, a former role model to the world as Superman, was paralyzed from the neck down after a horse riding accident at age 42. His mother wanted doctors to remove his life support, because she thought that he wouldn’t want to live like this, but he fought back.

So the meaning to his quote about HOPE is: Hope, in this sense, is a decision. It is the most important decision we can make.

This choice of Hope also is not just wishful thinking, it has to be rooted in a Believing, it must be in the form of Optimism, and it must be held together by handing it over to a trust in ourselves, a trust in the universe having our back, to any form of spirituality that does not even need to be religion based faith.

Absolutely Right Now, All of Our Mighty Family Needs help with feeling Empowered to be Hopeful and Optimistic And YOU can be a hero and participate in this mission that is greater than all of us, greater than our own social anxieties, greater than our own fears and doubts, greater than our fatigue…

Whenever you see this post, especially through the rest of the entire holidays —All of them coming up for all denominations and through and past New Years…add in a line or part of a line from a song, or a song title, that was written for Empowering all of us. That was written to speak to all of us. To Connect All of Us.

GAME ON.

GAME FACE.

YOUR friend in this hard thing called life,
Dawn

#Depression #Anxiety #GeneralizedAnxietyDisorder #MajorDepressiveDisorder #PersistentDepressiveDisorder #MoodDisorders #Selfharm #Selfcare #Grief #ChildLoss #BipolarDisorder #Suicide #SuicidalThoughts #SuicidalIdeation #SuicideAttemptSurvivors #BorderlinePersonalityDisorder #ComplexPosttraumaticStressDisorder #ChronicPain #ComplexRegionalPainSyndrome #Fibromyalgia #MyalgicEncephalomyelitis #ChronicFatigue #ChronicFatigueSyndrome #PTSD #Trauma #PostTraumaticStressDisorder #AlopeciaAreata #AutoimmuneThyroidDisease #CrohnsDisease #AdrenalInsufficiency #AutonomicDysfunction #Cancers #LymeDisease #Migraine #ParkinsonsDisease #MultipleSclerosis #RareDisease #ADHD #BipolarDepression #AnorexiaNervosa #EatingDisorders #PosturalOrthostaticTachycardiaSyndrome #POTS #AutismSpectrumDisorder #AspergersSyndrome #Addiction #CerebralPalsy #RheumatoidArthritis #Arthritis #Disability #AddisonsDisease #ChronicIllness #CysticFibrosis #DownSyndrome #Epilepsy #MyCondition #musictherapy #Music #Songs #MightyMusic #IfYouFeelHopeless #WarmWishes #Agoraphobia #SocialAnxiety

People have always told me that I am a gifted writer and that I have a way with words. Like any writer, I hardly ever believe these compliments. Many times, I would let the self-doubt consume me while comparing myself to other writers. In doing this, I became miserable. Writing is my outlet, how I best express myself- for fun and in pondering inquisitive ideas.

Today, I saw a post in a support group of mine: the member said she could no longer write due to her disability worsening. This wrecked me in a way I cannot explain; part of me thinks it is because I put myself in her shoes, wondering how it would feel to never write again. I also realized how much I take writing for granted. Maybe I’m a fantastic writer, or maybe I’m a horrible writer. Either way, I found a new motivation to write: for those who can no longer do so. #Epilepsy #Disability #MentalHealth