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What Not To Say and What To Say Instead

Part 1 of 2 “It could always be worse, right?”

Type 1 diabetes has been playing dodgeball with me since I was nine – that’s forty years and counting  — and I’m the ball. It tosses and kicks as I bounce off walls or people. Sometimes people are better, because they are soft and squishy and offer hugs. And then there’re other times….

By my teens, I showed early signs of kidney disease. Nerve damage from too much sugar in my system burned my feet and prickled my, well, everything —including my eyes and unmentionables. Concerned doctors predicted my demise.

“Susanne, if you don’t get tighter control of your blood sugars, you could die by the age of 25.” These threats were uttered with furrowed brows – the type my dad used to get when I talked back to him at the dinner table. Great. Now doctors were scolding me too.

So, when my ophthalmologist said to me in my mid-thirties, “Susanne, you have stage four retinopathy and are going blind. If this happens, you’ll need eye surgery to get your sight back. It’s not foolproof and included risks, but in the meantime, we’ll do multiple rounds of laser surgery to cauterize the problematic blood vessels growing on your retinas in hopes they behave.” I freaked out. As in, ‘sat staring straight ahead at a blank TV for hours each day until I threw a frozen pizza in the oven for dinner before the hubs came home because that’s all I could manage and then I’d stare some more and then cry and then pizza and then stare some more,’ type of freaked out.

My biggest fear in life was blindness from diabetes. (Although life has since taught me there are worse things like living in constant, debilitating pain from a gastric pacer implant that starved me from the inside. Surgery to remove it gave me relief after a long two years.)

How would I live as a blind person?!? How would I live with chronic pain and kidney disease and diabetes as a blind person? Did I mention I might have MS? My insulin pump demanded continual button-pressing with instructions on the screen. Injecting my pump canula every three days would be a whole new challenge. My continuous glucose monitor also needed inserting — a finnicky process every ten days or so. How would I discover new fashion trends and apply my makeup?! I could see my independence dripping to the floor in my tears as I anticipated living life in the dark.

That’s when a friend said, “Things could always be worse, right?”

Whoa. I mean, sure, my previous brain surgery was bad. And the death of my brother-in-law from a boating accident induced some trauma. And yeah, innocent mothers lose children in drunk-driving car accidents and earthquakes kill tens of thousands of people. I know this. Even so, I’m scared. I’m drowning in quicksand over here and can’t deal.

‘Sticks and stones will break my bones, but words will never hurt me.’

Oh, but they do.

Phrases like, ‘Think of all the things you have to be thankful for’ or, ‘Stay positive’ or, ‘Everything happens for a reason’ are, I’m sure, meant to be helpful. They’re not.

So, what’s the problem?

First, these phrases are dismissive.

They minimize what a person is going through. Even if you wouldn’t find blindness difficult, I certainly would. (I actually went blind in each eye separately and that was hard enough. Vitrectomies in each eye were necessary to restore most of my sight.) The sick or suffering just want you to agree that what they are dealing with is hard.

Second, they invalidate the negative feelings they are experiencing.

When hard times fall upon us, we feel scared, confused and lose our spark. Depression might settle in. The world becomes dark, even if we’re not physically blind. Still, in the name of ‘positivity’, the healthy and strong tell us, “Start each day with a positive thought and a grateful heart,” as Roy T. Bennett said in In essence, this tells us our ‘negative’ emotions (fear, sadness, frustration, etc.) are not allowed. Change. Your feelings are unacceptable. Why? Are we not built to feel it all?

Third, they can come across as commands.

They become another thing we are supposed to be doing as we struggle to even brush our teeth. To a sick or hurting person, the bossiness of these words lands on an already impossible to-do list. Take this day in my life: Shower. Get dressed. Make breakfast. Count carbs. Be positive! Test blood sugar. Take insulin. Call the GP to arrange bloodwork. Change the bedding. Start the wash. Test blood sugar. Take insulin. Look at the bright side! Get groceries. Take pain meds. Trust there’s a reason for it all! Head to hospital for an iron infusion. Be thankful! Rush to Neurologist appointment. Have a hypogl

The Light in the Heart Quotes by Roy T. Bennett

175 quotes from The Light in the Heart: ‘Attitude is a choice. Happiness is a choice. Optimism is a choice. Kindness is a choice. Giving is a choice. Res...

Air travel & disability

Hi everyone! I have several invisible disabling conditions that have recently gotten to the point where I request assistance from airlines when traveling. I had tough experiences with this yesterday and am wondering if others have experienced something similar.

My issues were:
- Getting my disability preboard boarding pass: the Southwest ticket agent did not want to give this to me, even though I indicated my multiple qualifying disabilities online. He requested extensive information about my invisible disabilities and how they affected boarding. Is this always a problem for people with invisible disabilities? How do you all navigate it with your dignity intact?
- TSA: I was subjected to random screening that involved vaginal groping. I struggle with touch in general due to autism, and to nonconsensual vaginal touch because of severe sexual trauma. The agent told me they can’t make any adjustments for disability, which sucks but seems to be their policy. To add insult to injury, they pulled my bag aside for extra screening and focused on the stuffed animal I packed (for disability reasons, but also kind of embarrassing).
- Preboarding process: the gate agent was rude about me preboarding and made a fuss about scrutinizing my preboard pass, since I was not elderly or in a wheelchair like the other preboard passengers. I needed a specific seat and wasn’t able to get it because I seemed less disabled than the elderly folks.

I don’t think anyone had bad intentions, but the experience really shook me and both made me feel like I’m subhuman and not disabled enough. Can anyone relate? Any tips or tricks?
#EhlersDanlosSyndrome #AutismSpectrumDisorder #PTSD #Blindness #AutonomicDysfunction #MastCellActivationDisorder

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MS Flare up or normal symptoms

I was diagnosed 17 years ago. After the first 5 years I went blind in my left eye for 3 weeks about a year and a half later my right optic nerve hemorrhaged, but did not cause blindness - only pain and blurriness at times. My main symptoms are headaches tingling in my hands and feet. I have a bit of balance issues, but these come and go. Overall, I count myself extremely lucky. About 3 days ago I started having vertigo like symptoms, but it seems to happen when I move my eyes especially up or turn my head quickly and my eyes move quickly. I get very dizzy and nauseous. Is this a new symptom I need to start living with or this a flare up? Anyone else experiencing this? Thanks for the support.

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I'm new here!

Hi, my name is Bagofcatsemily80. I'm here because I am reaching my 3 year mark from the day I was hospitalized for acute blindness (optic neuritis). At the time the neurology staff, mainly newly posted med students were very focused on an MS diagnosis and ruling out another more debilitating form I think it was NM. In the end my vision was restored after 3 days on IV solumedrol. I was given no diagnosis and followed up with both neuro-opthamologist and neurologist.

the thing is, my blindness episode began to take root on the last week of a 3 week stay in a beach cottage that was infested with ticks. It was in Orient, NY which just so happens to be a short boat ride Lyme, CT. At the hospital my Lyme tests were negative. I still to this day believe it was a tick bite.

I do not believe this was my first encounter with tick bites either. As a young girl, I spent 12 endless summers running through the woods of an area of Pennsylvania known for its dense deer and tick population.

I get migraines nearly every afternoon on both sides of the bridge of my nose, I have to lock myself in a cold dark room because it’s not the just the light but unbearable sound of my lovely family’s voices that can make me mean. I use a Neil sinus rinse bottle because it feels like there are rocks in my sinuses, after I use the Flonase. I have sinusitis but I keep erupting into hot burning hives from antibiotics that previously were fine to take. On these migraine days my anxiety sky rockets, my knees burn up and ache and stomach gurgles and cramps. A little while later, I have an intense need to vomit or otherwise. After this last event, I usually feel light, almost giddy as I drift off in a very sweaty deep sleep.

am I just being bullheaded about my Lyme’s speculation?

#MightyTogether #Migraine

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Keep Coming Back

It Works if you Work it, Oh you're not Worth it, due to exclamations such as these, I would think unfortunately so maybe someone who has put their trust, soul, love, hearts yearning, pain, past abuse, sadness, tears, close to suicidalness, friendship, revealment of true feelings, vulnerability, truth, co-friendship and reliance, FAITH, and did I say LOVE, into something that is promised as a support, may have no where to turn, and amid the abuse that person may end it, just saying have integrity or don't start at all, in this case it is not better to have love and lost than never to have loved at all or is it, it's a risky business and you could lose someone, Integrity does as Integrity is, true friendship is a Grey area, try to trust amid the blindness

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What means to be a Blind-Autistic at a work place. #Blindness #LegallyBlind #Autism

Having impairities or disorders may put lots of barriers over our life line or even make ourselves and our self stem fall in a state of comfort zone. But it's not always bad nor it should be seem as something negative, in my experience I heard a lot of people criticizing me stating that "You talk like you praise being disabled."
No, first of all, I don't see myself as _disabled_, I'm very able of doing absolutely anything I aim for and work hard to gain even if I can't see more than some little colours and near movement with my best eye, and even if my social skills are compromised, or tolerance to some high stimulations like noise, touch (In Brazil we have a huge touching culture), smells and emotions. And yes, I aknowledge that I'm not able to see in a very seeing focused world.
Second, my blindness, autism and BPD are not bad nor good, they are characteristics just like any other, like my sense of humour, or my interest in cats, or being a person that doesn't laugh much, they all have up and down sides to them. And here I tell some that I experience in my workspace:

1. Not always I greet my co-workers if they don't greet me.

Of course it's not because I'm rude, when I'm entering my workspace I always greet everyone I can, but as soon as I do my routine of washing my hands, washing my water bottle, filling my water bottle, positioning my cane and bottle in the table, etc. I just focus on what I have to do, so those who enter the place after me I either don't see them or am too focused with my activities to hear their steps, voice or objects like keys, white canes, or smelling what kind of perfume they usually use. So unless they make their presence to me using my name while doing so, I don't say anything untill I myself stop what I'm doing and realize the person arrived so I go and greet them.

2. I'm too focused on timing.

That's good and bad, I make an effort on being efficient and want to make my co-workers proud, mainly cause I'm an intern, so I have to show them I can keep up the pace and learn to do things properly and not fall in the intern stereotypes.
So if someone give me an activity, I don't stop doing it untill I'm done, I analyse and find strategies to do it more efficiently without commiting mistakes and not getting dehydrated because I love water so my 1,1L water bottle is always by my side while I work.
Problem about it is that when I'm not able to keep up the same pace as normally because of something else, I feel like I'm tarding everyone and put too much responsibility on myself wanting to do my work faster to get in the pace again. But my co-workers keep telling me to chill out because nothing is tardy, the pace is fine, and everything is okay, and I'm not messing up anything. Note: they tell me it without I even mentioning that I feel like I'm messing so I guess they can sense my worries.

3. I'm a fast learner

That's certainly a good one. I learn fastly absolutely anything that strikes interest in me, because I always devour every bit of knowledge I find about the subject. Of course, I never stop trying to learn because it's foolishness instead of intelligence and wisdom. That means as someone who struggle with low self stem, everytime I do it unconsciously, I get compliments and it makes me feel so good. So I always aim for more, and what I am good that others are not because they didn't have the same contact as I did (like in my workspace I'm the youngest and also the one who most had contact with computers.) I always try passing what I know to them so they can also learn something.

It doesn't matter our age, we always can learn and teach.

4. I tend to be methodically organized.

That really is good for the kind of work I do. For context I work in a Braille Library, although I'm currently on Biomedicine School. But being organized about things help me a lot on understanding how to find and put away a book, how to organize the system, how to keep up with dates when we do certain events, how to organize what books do I scan what books do I review for producting, where to find informations I need, what to say on the phone when someone calls, everything gets easier because organization, and even if you know some autistic kids' rooms that are messy, believe me, we know where to find what we want in our messes and changing where we put our things may end up badly for us emotionally. Bonus about being in a place for blind people is that hardly will the sighted workers change anything to another place without previously informing, because we need to be able to find things there, and the users also need to be able to orient themselves inside there.

Well that's all for now, I don't remember anything more since it's late/early in dawn, so I should try sleeping. Hope this post was informative and can help people realize that their "disabilities" are never to be seen as disabilities, but indeed if seen from another point of view, they can be a huge help on living and great talents to be proud of.

Image Description: it's a rectangle with the borders black and filled by a pattern of a puzzle with the pieces coloured with the autism puzzle colours, with a highlighted blind person icon. (Those that has a man holding a white cane) The icon is completely black, taking the shape it stands for.

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