I’m a Gladiator in a disabled body!

In my younger years, I used my body to explore, to express my big emotions. Go big or go home.
I loved to dance, heard rythyms everywhere.

I’d walk for hours. Exploring new paths.
Revisiting familiar ones.
Stopping to sit, my back resting against a tree.
Listening to the sound of my breath, looking deeply at my thoughts and feelings.

This introspection has been a feature of my experience for as long as I can remember.
Would seem I contemplate as a way of being in this world.

Over the past decade, my physical health has declined.

The body that could dance for hours and walk for miles. Now lies in bed. Fatigue often too great, or pain too penetrating to engage life fully.

But I’m not one to take things lying down! (Pun fully intended).

With much gratitude I’ve learned to embrace a wheelchair, as the “Silver” to my “Lone Ranger”.

I’ve discovered the power of taking adventures in my mind. Exploring new areas of my inner world.
My connection with the outer world, with you.
And the point where that which separates us, disappears.

I do miss the freedoms an able body provided me. I’m by no means completely accepting of the present state of things. With every decline or flair, there’s a new loss to grieve.

Within this experience is a deep well of humility.
It gives rise to deepening patience and compassion.
As my body ebbs my spirit flows.

I’m more in the arena now, than muscle alone would ever allow.

I only remember my life in pieces

It’s difficult to write the story of your life from scattered snapshots.
Memories strewn about, their proper order illusive.
 
The rugged landscape of the neurodivergent mind can be that way.
 
My memories are often out of sequence,
not catalogued in lengthy documentaries,
livestreams or reels.
They’re brief, not always in context.
Like a TikTok video or an Instagram photo.
 
My memories are unsorted details, in a pile, waiting to be sifted.
Remembering when something happened,
how long ago, and in what order, is often difficult to do. 
 
Calming the mind is like closing a window on a windy day.
A decisive way to keep the important things from blowing off the table.
Talking it through with a patient and compassionate someone,
helps my muddled brain to settle.
 
I review the snapshots, making meaning of them, until they connect like the squares of a warm afghan.
 
Consider, for instance, this post is written in snap shots.
Individual ideas, added together, then stitched into a warm afghan.
 
I’m much better able to relate to moments, than stories.
Looking for the barriers to peace, calm and happiness we create in each moment.
Learning how to patch them so they blend with each other more seamlessly.
 
This makes it difficult for me to appreciate, or even imagine the bigger picture. Fortunately, I have trusted friends to lend me their view.
What I lack in big picture thinking, I possess in a powerful ability for living life fully, right now.
 
This is my contribution to you.
Let’s weave a moment, together.

Is your ADHD a snowstorm or a sandbox?

I often refer to the ADHD brain as a snowstorm.
The snowflakes are thoughts, the winds blowing snow in my face are anxiety.
The problem I run into is it encourages me to think of my brain as chaotic, overwhelming and out of control. Honestly, it can be sometimes.
 
But what if I view this brain as a sandbox.
The sand grains are thoughts, but I’m not in a sandSTORM.
I can stand outside of the box, sit or stand in the box.
I can decide which grains I want to play with at any given time.
 
So the ADHD brain can be chaotic or playful.
Playful, as it zips around chasing shiny objects, asking tangential questions and feeding its curiosity.
 
I do often find myself in the snowstorm, its part of the territory.
I spend as much time as I can being the observer (of the grains of sand), instead of feeling trapped in the snowstorm.
 
Learning to take a step back from your busy brain versus being in battle with it constantly, is something I’m very good at teaching.

Always consider sometimes it never a losing proposition

Folks with ADHD could fall into a trap of feeling anxious while away from you, because they’re concerned if you can’t see them, you’re likely to forget about them.
 
This stems in part from all-or-nothing thinking that believes, “You think of me all the time or none of the time. There’s no in between.”
 
This is the same reason we forget we bought something. If you don’t frequently go into the cabinet or drawer it’s in, you may forget you have it.
 
SECRET: It’s also common to forget about people you haven’t talked to in a while because they aren’t top of mind. Until something reminds you they exist, then you scramble to figure out what to do. There’s a simple solution for this.
 
“You never spend time with me!” or “You never pay attention to me!” Sound familiar?
 
“Never” is the operative word. When you think in terms of “always” or “never”, you can’t get your needs met because they’re perfectionistic.
 
The key is to teach to virtue of “sometimes”, and the mindset that makes it the preferred way of thinking about things.
 
This is a big part of what we discuss in my N.E.W. Community.

When someone wants to talk, but you want to be left alone. What do you do?

May be an image of 3 people, people standing and text that says 'When someone wants to talk, but you want to be left alone. What do you do? NeurodivergentWomen.co ANURODIVERGOM ekaTar.com'People with Autism or ADHD, can be so focused on what they’re doing, they don’t notice when others are talking to them.
 
I remember in my younger days when I was far more anxious around people. I’d treat going into public like a reconnaissance mission.
 
MISSION: Get in, get what you came for, then get out. Don’t make eye contact or interact with the locals in any way.
 
When people would talk to me (especially strangers), it was like I expected to be invisible but someone saw me and wanted to peak under my armor.
 
If I didn’t feel I could act like I didn’t hear them, I’d sometimes smile politely. Then I’d get back to what I was doing. It may seem dismissive, but if it’s at the expense of my calm and focus, I stay the course.
 
If I stopped and talked, it could send me down a rabbit hole that risks a lengthy conversation, with no clear escape route, that could derail my ability to complete my mission before overload sets in.
 
My brain does so much better when I’m expecting a conversation. Even when it’s someone I know, a heads up gives me time to make sure I have the time, energy and focus to give them.
 
When in public, holding it together is hard enough. Which is why completing tasks in busy places as quickly as possible can be good self-care.
 
I’ve learned, listening to music in these places decreases the likelihood someone will talk to me. It also releases neuro-chemicals to help me stay calm.
 
It can be challenging to balance self-care with social expectations. But wanting you to engage when your needs aren’t met, could lead to a crass exchange no one enjoys.
 
How do you handle these situations?

ADHD can use hyperfocus against you…

May be an image of 2 people and textThere’s something missing from the discussion about ADHD as an “interest based” nervous system. Meaning it focuses (or hyperfocuses) best, when engaged in activities it finds interesting and rewarding.
 
“Interesting”, is typically defined as activities that are preferred, pleasurable, and lead to bursts of dopamine which feels rewarding.
 
But the pendulum swings the other way. Adrenalin can feel rewarding as well. A nervous system interested in avoiding threat, may find focusing on everything that could go wrong, to be very rewarding.
 
Rewarding in that you believe if you’re always on the look out, you’ll be ready. Feeling prepared, safe is something you’re interested in. So you focus on the thoughts and habits that will reward you with feeling that way.
 
Follow me?
 
Interest for an ADHD nervous system can quickly become a preoccupation, such that you develop hyperfocus on it. Your tunnel vision can make it difficult to think or do otherwise.
 
On the positive side, this is a powerful ability when working in your area of giftedness. Not so much when using that ability to guard against threat, versus embracing what you love.
 
There is a balance here. It’s found in being able to manage your emotions. So even when they get swept up by your hyperfocus leading to hyper emotions, you know how to calm down.
 
It’s a process to learn of course, but something I’m amazingly skilled at teaching. Just ask the women in my membership group.

I was limited by my tunnel vision

I set a goal to lose weight this year. I imagined walking (you know, 10,000 steps a day) would play a big role in that.

Since I have such difficulty walking, weight loss has been minimal. Enter necessity!

I had the opportunity to visit the local hospital today (all’s well), with time on my hands.

I decided to vigorously wheel myself up and down the main hallway.

I now lie in bed with a very sore body. I used everything in my torso, abs and hip muscles. I feel like I did physical work.

That’s uncomfortable and rewarding 🤔 I’ve needed more physical activity but held a narrow vision of what that meant (walking).

I wasn’t trapped by my disability. I was limited by the options I allowed myself to consider.

I don’t think I’ve had the opportunity to do this much in my chair, enough to be this sore.

It’s a welcome wake up to an option for improving my physical and mental health, even more.

Equality is great and all but we need equity!

Equality is great and all. But without equity of access, entire segments of the population are locked out of full participation in society.

There are historical buildings I can’t enjoy, because laws protect them from adding accessibility features (e.g. ramps or elevators) as they may alter the historic look of the building.

One of my favorite places to visit is Galena, IL. It has a beautiful Main St., filled with shops in historic buildings.

It wasn’t until I visited for the first time in a wheelchair, that I discovered how inaccessible the entire tourist section of town was.

We all have 24hrs in a day. We don’t all have the same access to resources (e.g. money, transportation, medical insurance, physical assistance and access).

We won’t have this without equity. It’s difficult to live fully and experience your potential, in a world with more locks than keys.

Writing it down is harder than you realize…

Today, my members discussed how many more options exist for communication.

One member shared that a teacher made the comment (to her child with dyslexia), “If you don’t start (hand) writing now you’ll never learn how to write”.

This teacher clearly didn’t appreciate the impact dyslexia had on this child.

In the case of my dyslexia, the act of handwriting is physically painful and exhausting.

It’s also too slow for my brain, I often forget what I wanted to write. I forget what I’ve already written, so I need to keep stopping to read what I’ve written – PHEW!

Don’t get me started on grammar, punctuation and sentence structure.

Dyslexia affects how well the brain processes the written word. If a student struggles with writing, allow them to tell you verbally.

Let them dictate their longer written assignments, classmates can help with editing in exchange for extra credit.

I happened upon a video about, Elizabeth Bonker. She’s autistic, nonverbal and the Valedictorian of her graduating college class.

She gave the commencement speech using text-to-speech technology. Something I use daily to help me read.

There’s more than one road to Rome, and there’s more than one way to communicate. Let’s work with each other.

We’re all in this together!

May be an image of 2 people and textNothing like a supportive community to remind you you’re not alone.
 
I asked the following question in a group for people living with Ehlers-Danlos Syndrome, “How much time do you spend resting?”
 
You see, I often spend more time in bed than out. Whether it’s pain, muscle cramps or the debilitating fatigue, there’s something that makes it necessary to lie down.
 
I’ve been feeling particularly guilty lately because I’ve been needing more rest.
 
The answers I received from members of the EDS group were so familiar.
 
Some worked through the week then rested all weekend. Like I often do.
 
One mentioned needing to do as much as possible early in the day. That’s my reality as well. I usually have four good hours, first thing when I can be up and about.
 
After that, my body starts loudly glitching.
 
Sometimes everything aligns and I have a golden day. That’s when I have enough energy to be up and do things with my family. Without feeling I’m forcing my body to keep going.
 
Being disabled can be isolating, especially in your closest relationships, when you’re aware you often need more help than you’re able to give.
 
Reading those answers reminded me there are countless others, finding ways to do their best, to live fully in a body with big limitations.
 
Add Neurodivergence to the mix and see what happens. I get to navigate ADHD, Autism, Dyslexia, Dyscalculia, Depression and Anxiety as well. Thank goodness for coffee. 
 
This reality has required me to learn resourcefulness, reframing and resilience to an extraordinary degree.
 
As the EDS group is such a blessing and support for me, so is the group I run for my Neurodivergent clients.
 
A place where you can feel connected, seen, understood. Where you know you belong and will get exactly what you need when you need it.
 
From a group of people you trust and can be vulnerable with. We’re all in this together.