- Lewis Bartelle
- May 10
THE POWER OF NAMING YOUR DISABILITY
Hey everyone, Lewis here — and I want to ask you something before we even get started.
When someone asks what’s wrong with your speech, what do you say?
Do you wave it off? Say “I had a stroke” and leave it there, hoping they stop asking? Maybe you mumble something about a medical thing and change the subject as fast as you can? I did all of that. For a long time, I was fluent in vague. I had a whole vocabulary built around not quite saying it — and I didn’t even realize it was costing me something every single time.
Then one day, I just said it plain.
I have dysarthria. I have ataxia. I have double vision.
And something shifted.
What Happens When You Name It
There is a thing that happens in the space between knowing something and saying it out loud. Knowing it keeps it inside you, where it can grow and mutate and take up way more room than it deserves. Saying it out loud — clearly, without apology, without a lowered voice — that does something different. It makes the thing real, yes. But it also makes you real in relation to it.
I stopped being a guy with “some speech stuff from the stroke.” I became a man with dysarthria — which is a neurological motor speech disorder, by the way, not a personality quirk, not nervousness, not something a glass of water fixes. I became a man with ataxia — which is why my hands do what they do, why my balance works the way it works, why some days are harder than others for reasons that have a name now. I became a man with double vision — which is why certain environments light me up like a pinball machine from the inside.
Naming those things didn’t defeat me. It freed me.
Here’s what I think is actually happening when we refuse to name our disabilities: we’re trying to protect ourselves from the weight of other people’s reactions. If I say it, they might look at me differently. If I say it, it becomes more real. If I say it, I’m admitting something.
But here’s what I know after 14 years on this road: the shame doesn’t live in the word. The shame lives in the silence around it. Every time you dance around your diagnosis, you’re sending yourself a message — this is too big, too ugly, too much to say plainly. And you deserve better than that message.
And let me tell you what was happening during all those years of vague vocabulary — I was apologizing. Constantly. Every conversation where my speech drew a look, a pause, a confused expression — sorry about that, I had a stroke, sorry, I know it’s hard to understand, sorry. Over and over. Like my voice was an inconvenience I was inflicting on people.
That went on for a while. And then one day I just decided to stop.
I decided to stop apologizing for something I have no control over. This is dysarthria. I live with it now. There is nothing anyone can do about it — it is what it is. It goes on the list with ataxia and double vision and post-stroke fatigue and everything else in that Unseen 80%. It has a name. It belongs to me. And I will not waste one more breath apologizing for it.
That was the shift. Not some big dramatic moment — just a quiet decision that enough was enough. The apologies were gone and something that felt a lot like dignity walked in to take their place.
Name it. Take the power back.
Own It — Name It — Move Through It
This is something I talk about a lot in the Army of Warriors community, and it applies here as directly as anywhere: you cannot move through something you won’t look at.
This isn’t just motivational talk — there’s real psychology behind it. When we acknowledge a stressor clearly and specifically, we activate the problem-solving parts of our brain instead of the threat-avoidance parts. Vague fear spreads. Named challenges get managed. The moment dysarthria became a word I said out loud, it stopped being this formless thing following me around and started being a condition I could research, explain to others, advocate around, and yes — even laugh about when the moment called for it.
Watch out, I talk funny: Dysarthria. That line is in my book. I put it there on purpose. Not because it’s a punchline — because it’s mine. I named it. I own it. It doesn’t own me.
The Unseen 80% — all those invisible symptoms that nobody sees when they look at you from across the room — gets heavier when you carry it unnamed. Post-stroke fatigue doesn’t look like anything from the outside. Neither does the cognitive fog, the word-finding delays, the sensory overload, the emotional dysregulation that catches you sideways on a random Tuesday. But when you name them, to yourself and to the people who need to understand — something lightens. Not because the symptoms change. Because you change in relation to them.
Warrior to Gladiator is exactly this. A Warrior survives. A Gladiator claims the arena. You can’t claim ground you’re pretending isn’t there.
The Picture on the Wall
There’s another piece of this I want to talk about — and it might be the most practical thing in this whole article.
Take a picture. Or find one from the beginning.
I am absolutely serious. One of the most powerful motivational tools available to any survivor costs you nothing and requires zero equipment beyond the phone already in your pocket. Go find the earliest image you have from your recovery — day one in the hospital, first week in rehab, first time back home. Wherever your starting line was. Look at that person.
Now look at where you are today.
That distance is real. That distance is yours. And on the days when recovery feels like it’s going nowhere, when The Long Middle has stretched so far you can’t see either end of it — that picture is proof. Not proof that you’re fixed. Proof that you are moving. Proof that the work is working even when you can’t feel it working.
I have a picture on the wall at Methodist Hospital now. I go back there with Stroke INSPIRE and I walk those halls that I once couldn’t walk, and I talk — with my dysarthria voice, out loud, unapologetically — to people who were where I was. That picture, that distance, that proof — it matters more than any pep talk I could give.
Your Victory Journal is built on this same idea. Every S.T.E.P.S. you log, every day you show up and write something down — that’s you building a record of distance covered. Month one versus month six. Page one versus page sixty. That’s not just journaling. That’s evidence. That’s the case you’re building against every voice that says nothing is changing.
Document the journey. Look back often. That’s the fuel.
A Declaration, Not a Defeat
I want to be clear about what owning your diagnosis is not.
It is not giving up. It is not reducing yourself to a label. It is not resigning yourself to a ceiling.
When I say I have dysarthria, I am not saying dysarthria is all I am. I am saying: this is part of my real life, I am not ashamed of it, and I am equipped to deal with it. There is a world of difference between I am broken and here is exactly what I am working with. One of those sentences has nowhere to go. The other one is a starting line.
The worst day of your life became the first day of the strongest version of yourself. That sentence only makes sense if you’re willing to look at what that day actually handed you — by name, out loud, in the light.
Name it. Own it. Move through it.
That’s the hustle.
That’s all I’ve got for today, Warriors — and I genuinely hope something in here landed for you. If you’ve been doing the vague dance around your own diagnosis, I want you to try something this week. Just say it. To yourself in the mirror if nobody else. Out loud. By name. See what it feels like on the other side of that sentence.
Then come tell us about it. The Beyond The Shatter Facebook community is exactly the place for that conversation — find us there and bring your whole honest story. And if you’re ready to go deeper on the identity and recovery work, the Army of Warriors program at BeyondtheShatter.com is waiting for you — always free, always yours.
The complete roadmap — every piece of this, start to finish — lives in Beyond Shattered on Amazon. If you’re navigating this without a guide, that book was written for you.
See you out there.
— Lewis
- Lewis Bartelle
- Apr 26
Updated: May 2
What a Stroke Reveals About the People Around You
Hey everyone, Lewis here.
I want to talk about something that caught me completely off guard in my recovery. Something I was not expecting and was not prepared for — and that turned out to be one of the most important and most painful lessons of this entire journey.
When my stroke hit, the people around me showed me exactly who they were.
Not who I thought they were. Not who they had presented themselves as across years of friendship and family and shared history. Who they actually were — underneath all of that, when the circumstances got hard enough and sustained enough to strip away the performance and show the real thing underneath.
Some of what I saw took my breath away with its beauty. And some of it broke my heart.
This article is about both.
The First Wave — Everyone Shows Up
Here is what almost always happens immediately after a stroke.
The news travels and the people come.
The waiting room fills. The cards arrive. The phone buzzes constantly. The meals get dropped off. The offers of help pour in from directions you never expected. People who you had not spoken to in years reach out. Acquaintances show a depth of care that surprises you. The community wraps around the survivor and the family in a way that is genuinely moving and genuinely sustaining in those first impossible days and weeks.
I remember the warmth of that first wave. The sense of not being alone in something enormous. The evidence — tangible, visible, showing up in actual human form — that people cared.
And then something happens that nobody warns you about.
The acute phase ends. The crisis stabilizes. The dramatic, visible, clearly urgent part of the story moves into a quieter, slower, less dramatic chapter. Life, for the people who love you, begins to return to something resembling normal. And gradually — not all at once, not dramatically, but steadily and unmistakably — the first wave recedes.
Some people stay. Some people fade. And the difference between those two groups turns out to be one of the most revealing things a stroke ever shows you.
The Ones Who Stayed
Let me start here because this is the part I want you to hold onto when the rest of this article gets harder.
The people who stayed — who showed up not just in the first dramatic weeks but in the long, unglamorous, unsexy months and years of actual recovery (the "long middle") — are the most extraordinary human beings I have ever encountered. And I mean that without any exaggeration.
Staying is hard. Staying means watching someone you love fight something difficult and slow without the adrenaline of the acute phase to carry you through. It means adjusting your communication because dysarthria is part of every conversation now. It means learning a new patience for the pace of recovery. It means absorbing frustration that is not directed at you but lands near you anyway, and choosing to understand rather than react. It means showing up on a Tuesday when there is no crisis and no emergency and no particular reason to be there except that you said you would be and you are.
Staying is a choice made over and over again across months and years. And the people who make that choice — consistently, without fanfare, without requiring recognition for doing it — those are your true Cornerstones. The load bearing pieces of your recovery foundation. The ones the puzzle cannot be assembled without.
I think about the people in my corner who stayed during therapy milestones and the quiet ordinary days that did not have anything particularly notable about them except that I was still in this fight and they were still beside me.
God put people in my life at exactly the right moments who had no obligation to be there and chose to be anyway.
I count that as one of the clearest blessings of this entire journey.
If you have people like that in your life right now — name them. Thank them. Tell them specifically what their staying has meant. Because staying costs something and it deserves to be acknowledged.
The Ones Who Faded
Now for the harder part. And I want to approach this with as much grace and honesty as I can, because I have had thirteen plus years to process it and I know how raw it can feel when you are still in the middle of it.
Some people faded. And it hurt.
Not the acquaintances whose first wave support was always going to be brief — that is understandable and appropriate and not what I am talking about. I am talking about the people I expected to stay. The ones whose relationship with me felt substantial enough to weather something like this. The friends of years. The family members I assumed would be Cornerstones. The people who showed up in the first wave and then, slowly and without announcement, disappeared into the demands of their own lives.
Some of them I heard from less and less as the months went on. Some of them pulled back in ways that were never explicitly explained. Some of them were still physically present but emotionally absent — there in body, checked out in spirit, visibly uncomfortable with the sustained reality of what this journey looked like.
And some of them said things that revealed a fundamental misunderstanding of what stroke recovery actually requires. Things that made clear they had expected a different timeline. A faster return to normal. A version of me that was closer to the original and less demanding of patience and accommodation and genuine, sustained attention.
I want to be careful here because the reasons people fade are complicated and not always what they appear to be. Some people genuinely do not know how to be present with sustained difficulty — not because they do not care but because they have never developed that capacity and the stroke exposed the gap.
Some people are dealing with their own things that stroke recovery is competing with for their bandwidth. Some people loved me in a way that was real but did not have the specific kind of endurance that this particular journey required.
Understanding that does not make the absence hurt less. But it helps me hold the loss without bitterness. And bitterness is a weight stroke recovery cannot afford.
The Loss Within the Loss
Here is something I want to name directly because I do not think it gets talked about enough.
Losing people during stroke recovery is its own grief. On top of the grief for the former self. On top of the grief for the capabilities and the career and the life that looked different before. On top of all of that — the loss of relationships you thought were solid is a specific, sharp, genuinely painful kind of hurt that deserves to be acknowledged as real.
You are allowed to grieve those losses. You are allowed to feel the sting of the absence. You are allowed to be honest about the fact that some people showed you something during this time that changed how you see them — and that the changed seeing, even if it ultimately led somewhere clarifying, came with a cost.
What you are not allowed to do — or rather what I would encourage you not to do — is let that grief become the story. Let it be a chapter. Let it be a painful and instructive and ultimately clarifying chapter in the larger story of who showed up for you and what that meant. But do not let it become the whole book.
Because the whole book also contains the ones who stayed. And those people — those extraordinary, choosing-it-every-day, showing-up-on-a-Tuesday people — deserve the biggest chapters.
What the Stroke Was Actually Revealing
Here is the reframe that took me years to arrive at and that I now hold onto firmly.
The stroke did not cause the people who faded to be who they turned out to be. It revealed who they already were. The capacity — or the limitation — was always there. The stroke just created the conditions that made it visible.
And the same is true in the other direction. The people who showed their true colors in extraordinary ways — the ones whose depth and loyalty and genuine care became unmistakable under the pressure of this journey — they were always those people too. The stroke just gave them the conditions to show it.
This is what I mean when I talk about true colors. Crisis does not change people. It illuminates them. It turns up the contrast on qualities that were always present but not always visible in the normal, comfortable, low stakes conditions of everyday life.
And once you see those true colors clearly — in both directions — you have information. Real, valuable, clarifying information about who belongs in your inner circle and who belongs at a different distance. That information is one of the unexpected gifts of this journey. Expensive. Painful in the getting. But genuinely useful in the living.
Building Your Circle From What You Learned
So what do you do with what the stroke revealed?
You build from it. Intentionally. Deliberately. With the clarity that only comes from having had the performance stripped away and the real thing left standing.
You draw your Cornerstones close — the ones who proved themselves load bearing. You lean on them without guilt. You tell them what their staying meant and keep telling them because they deserve to hear it. You let their presence be the foundation that it is and you build outward from them.
You hold the ones who faded with grace — not with bitterness, not with the ongoing energy of hurt and resentment, but with the clear eyed understanding of what you learned and the appropriate adjustment of where they fit in your life going forward. Some relationships can be rebuilt on a different foundation than the one you assumed was there. Some cannot. Knowing the difference is part of the work.
And you look for the community that was built for exactly this — the people who understand what you are carrying not because they were there on October 7th but because they have their own date. Their own coma, their own gait belt, their own discharge folder, their own long middle.
That community exists. I found mine in 2016 through Stroke INSPIRE and it changed the trajectory of my recovery. Not because it replaced the Cornerstones in my personal life but because it added a layer of understanding that only people who have walked this exact path can provide. When everyone in the room nods because they know precisely what you mean — that validation is immediate and profound and unlike anything else available on this journey.
Come find that in the Beyond The Shatter community on Facebook. It is full of survivors at every stage who showed up because they needed exactly what you need right now — people who get it without explanation. And if you are ready to let your story become a light for someone else who is trying to figure out who showed up for them — the Army of Warriors program at BeyondtheShatter.com is waiting. Always free. Always yours.
The Gift Inside the Hard Truth
I want to close with this because I mean it completely.
The stroke showing you people’s true colors is one of the hardest gifts this journey gives you. Hard because some of what gets revealed is painful. Hard because the clarity comes at a cost. Hard because you did not ask for this particular education and you would have preferred to learn it some other way.
But it is a gift. Because you now know — with a certainty you could not have had before — exactly who your people are. The ones who stayed. The ones who chose it over and over again across the months and years of a journey that asked a lot of everyone in it. The ones whose true colors turned out to be extraordinary.
Those people are your foundation. Build on them. They earned it. And so did you.
— Lewis
- Lewis Bartelle
- Apr 19
Updated: May 2
Finding What the Stroke Moved, Not Took
Hey everyone, Lewis here.
I want to talk about the moment that stopped me cold somewhere in the middle of my recovery.
I was sitting at my puzzle table — the same one where the occupational therapy sessions had first introduced me to what would become the central metaphor of everything I have built since — and I was staring at a gap. A section of the puzzle where several pieces clearly belonged together but none of the pieces in front of me seemed to fit. I had tried every piece within reach.
Nothing worked.
And for a moment the thought crept in that maybe those pieces were simply gone. Lost under the furniture somewhere. Missing from the box before it was ever opened. Just — absent. With no replacement coming.
I almost moved on and left the gap there.
Then I looked in the corner of the table where I had pushed aside a small pile of pieces I had already sorted through and dismissed. And there they were. Right where I had left them. Not missing at all — just waiting in a place I had stopped looking.
That moment taught me something about stroke recovery that I have never forgotten.
Most of what feels missing has not disappeared. It has moved. And the difference between those two things is everything.
The Inventory of Loss
Before I go further I want to acknowledge something honestly — because this article only works if we are telling the truth about the full picture.
Some pieces are genuinely different after a stroke. Some capabilities have been altered in ways that are real and permanent. My cerebellum sustained damage that affects my balance, my coordination, and my speech every single day thirteen plus years later.
The career I spent eleven years building ended on October 7th 2012 and did not come back in the same form. The physical ease I moved through the world with — the running, the wrenching on cars, the rapid fire conversation — those pieces look different now than they did before.
I am not going to tell you that everything comes back if you just believe hard enough. That is not honest and it is not useful and you deserve better than that from me.
What I am going to tell you is this: the gap between what the stroke took and what feels missing is often much larger than reality. We tend to look at the altered pieces and the genuinely changed capabilities and then — in the exhaustion and grief of early recovery — we start labeling everything we cannot immediately see as gone. Permanently absent. Not coming back.
And that labeling, done too quickly and too broadly, closes doors that are still very much open.
What the Stroke Moved
Here is my own story. And I am sharing it not because it is dramatic but because it is specific — and specific is what makes this real.
Before my stroke I was building a custom lowrider. This was not a hobby. This was a passion that went back to my earliest days in the car audio business, that ran through eleven years of building some of the most head turning rides on the road, that was woven into my identity as completely as anything I have ever done. The truck in my garage was an expression of who I was — the craftsmanship, the precision, the pride of building something remarkable with your own hands. I would call it “my rolling resume”.
The stroke took that.
Not the love of it — the ability to execute it in that specific form. The fine motor demands. The physical requirements. The version of me that could spend a weekend under a hood without my hands shaking or my balance failing or my vision doubling at the wrong moment. I eventually had to sell the truck. And for a long time that felt like one of the most significant missing pieces of my entire recovery. A gap in the puzzle I did not know how to fill.
Then I discovered high end Lego car kits.
Intricate. Precise. Technically demanding in exactly the ways that stroke recovery was asking me to rebuild — fine motor coordination, focus, sequencing, problem solving, the executive function of following complex instructions step by step. My occupational therapist would have assigned it as therapy. For me it was passion. My love of building, of cars, of the deep satisfaction of something complex coming together piece by piece under my hands.
The piece was not missing. It had moved. From a full scale custom lowrider to a three thousand eight hundred piece Lego Technic set. Different form. Same soul. And building those kits — every click of a piece into place, every section completed, every time I looked at what my hands had made — was the puzzle piece of who I am clicking back into its spot.
That is what I mean when I say the stroke moved things rather than took them.
The Three Types of Pieces
In my experience there are three kinds of pieces in the post stroke puzzle and learning to tell them apart changes everything about how you approach the assembly.
The pieces that came back.
These are the capabilities, the relationships, the aspects of your identity that the stroke disrupted but did not permanently alter. They feel gone in the early stages — sometimes for months, sometimes for years — but with consistent effort, neuroplasticity, and time they return. Not always in exactly the same form but recognizably yours. The word that finally came out clear. The step taken without assistance. The conversation held without losing the thread. These pieces were never gone. They were in the corner. And the work of recovery is largely the work of finding them and placing them back where they belong.
The pieces that changed shape.
These are the ones that require the most creativity and the most patience. The capability that will not return in its original form but whose essence — the passion underneath, the identity it represented, the need it fulfilled — is still completely present and waiting to find a new expression.
My lowrider became Lego kits. A surgeon whose hands can no longer operate might become a medical educator whose knowledge saves lives in a completely different way.
A runner whose stride has permanently changed might discover that the discipline and the solitude and the physical challenge of running were always what mattered — and find them again in a different movement. These pieces did not disappear. They are waiting for you to stop looking for their original shape and start looking for what they were always really about.
The pieces that are genuinely different.
These deserve honesty and they deserve to be honored. Some things changed permanently on October 7th 2012 and they are not coming back in the original form no matter how hard I work or how long I wait. And part of the work of building this new puzzle is making peace with those pieces — not in a defeated way, not in a giving up way, but in the clear eyed way of a builder who looks at the pieces available and says: okay. This is what I am working with. Now what can I build?
Honoring real limitations is not the same as accepting the Permanent Ceiling Trap. One is wisdom. The other is surrender. The difference is whether you have actually tested the limit — consistently, specifically, over time — or whether you decided it was permanent before you truly found out.
How to Find What Moved
So how do you actually look for the pieces that seem missing? Here is what I have learned works:
Stop looking for the original shape.
This is the hardest one. When we look for missing pieces we tend to look for exactly what was there before — the same form, the same function, the same feel. But if the piece has moved it has almost certainly changed shape. You will not find it by looking for the original. You find it by asking a different question:
what did that piece actually give me? Not what did I do — but what did it mean. What need did it fulfill. What part of who I am did it express.
Answer that question honestly and you start to see the new shape the piece might be taking.
Look in the corners you dismissed.
Early in recovery when everything is overwhelming and the energy for searching is limited, we sort pieces quickly and move on. We make fast judgments about what fits and what does not. And sometimes in that speed we push pieces aside that we have not actually given a fair look.
Go back. Look again. With fresh eyes, more time, more information about who you are becoming. The piece you dismissed six months ago might be exactly what the puzzle needs right now.
Pay attention to what lights you up.
Passion is a GPS signal. The things that still make your eyes light up — even in their current limited form, even if you cannot fully access them yet — are pointing you toward the pieces that moved. Follow that signal. It knows where things went even when you do not.
Give it time.
Some pieces do not reveal themselves on your timeline. I did not discover the Lego car kits immediately. It took time, experimentation, and a willingness to try things that felt like pale substitutes before I found the thing that was actually a genuine replacement. Be patient with the search. The pieces are there. Not all of them reveal themselves at once.
The Gap Is Not the End of the Picture
I want to close with something I need you to hear if you are sitting in front of your puzzle right now looking at a gap that feels permanent.
A gap is not the end of the picture.
Some of the most beautiful mosaics in the world have deliberate spaces in them — not because the artist ran out of material but because the space itself is part of the design. What you lost, what changed, what looks different now — those spaces are part of your picture too. They are evidence of what you survived. They are the cracks where, as someone once said, the light gets in.
The puzzle you are building now is not supposed to look like the original. It is supposed to look like what you built after the original shattered — and that picture has something in it that the original never could have had. Resilience woven into every piece. Intentionality in every placement. The deep, hard won beauty of something assembled piece by piece by someone who had every reason to leave the pieces on the floor and chose instead to keep building.
Keep looking in the corners. Keep asking what the pieces were really about. Keep building with what you have while staying open to discovering what else is there.
The missing pieces are not as missing as they feel.
And the picture you are building — I promise you — is worth finishing.
If you want the complete framework for this process — the full roadmap for rebuilding life after stroke piece by piece — Beyond Shattered is on Amazon and it was written for exactly this moment. Every chapter is a stage of the assembly and the puzzle metaphor runs through all of it.
And when you are ready to share the picture you are building — when the story of what you found in the corners of your own recovery is ready to become a light for someone else — the Army of Warriors program at BeyondtheShatter.com is waiting. Always free. Always yours.
Keep building.
— Lewis
