I never thought I would need to explain the way my brain works. But perhaps understanding each other starts with being willing to explain…
I have brain damage. There. We got that out of the way. 😂 I have lived through multiple traumatic brain injuries, strokes, seizures, serious illness, and years when walking and speaking were things I had to fight to regain. My brain simply does not work the way it once did. And it certainly does not always work the way other people expect a brain to work.
I talk in pictures. I hear in color. I see patterns.
Sometimes I know exactly what I am trying to communicate and cannot find the correct word to carry it from my brain to yours. Sometimes my fingers type something completely different from what I intended. Sometimes autocorrect joins the party and makes the situation dramatically worse. lol And sometimes my thoughts arrive faster than language can organize them.
That can be confusing for people. I understand that. What I wish more people understood is that confusion does not have to become judgment. You can ask me, “What did you mean?” or, “I think I misunderstood that.”
You can give me the opportunity to find another word, another description, another way of showing you the picture in my head.
In fact, I prefer that. What hurts is when someone decides what I meant without ever asking me.
If You Judge People Only by Their Words, You May Judge Me
There will probably be typos in my emails. There will probably be typos in my texts. There will probably be typos in my posts. There may even be one in this blog after I proofread the thing three times. And their may be glitches in my thought process while trying to communicate in person. I may appear passionate, or even fanatical at times….Oh well.
My ability to spell perfectly is not the most interesting thing about me. Neither is my ability to construct the socially perfect sentence. I also live with the effects of trauma, including PTSD, and I sometimes experience anxiety, depression, overwhelm, or shutdown. And because my brain does not always provide me with the luxury of hiding what is happening inside me, people usually know when I am struggling. There is not much fakery available here. 😂
You will probably know when I am joyful. You will probably know when I am hurting. You will definitely know when I am frustrated. And yes, sometimes I cuss. Sometimes quite creatively… I spent enough years fighting to remember words that I refuse to be ashamed when the word my brain successfully retrieves happens to have four letters. Sometimes it is simply the correct technical terminology for the situation. 😂
By their fruits you will KNOW them…
I Am Not Interested in Performing “Normal”
People have used many labels for brains like mine. Disabled, Neurodivergent, Autistic, OCD, ADD or ADHD, Brain injured, Retarded, Crazy, Delayed, Different…
And growing up, people also used terminology that today is widely considered insulting or unacceptable…sorry, I didn’t get that memo…and even if I did, it’s lost somewhere in my memory I am rebuilding…
I have complicated feelings about all of those labels because I have never liked reducing an entire human being to one description. Some words that wound one person may be words another person has reclaimed to describe their own history. I believe people deserve the dignity of choosing the language they use for themselves.
You do not have to use my language for yourself. And I will not use language for you that you do not want. That seems like a pretty reasonable arrangement……What matters much more to me is this; Different does not mean incapable.
I have spent a large portion of my life being told what I supposedly could not do. And then doing things anyway. There were years when walking was not a given, speaking was not a given, remembering was not a given, building an ordinary life was not a given…
So these days, when someone notices that my sentence came out strangely, part of me wants to laugh. Because yes. The sentence came out strangely. BUT DID YOU NOTICE I MADE A SENTENCE AT ALL? 😀
Sometimes we become so obsessed with what someone does differently that we completely miss what they overcame just to be standing in front of us.
Welcome to a Normal Conversation Inside My Brain
If you spend time with me, you may eventually experience something like this:
“The birds are beautiful because the boat sank after……wait, what was I saying? Anyway, the trees… and then last month the shuttle… but tomorrow we can build this… OH CRAP, did somebody feed the dogs?… Where is the shovel?… Are you hungry?… I just thought of ten more projects.” 😂😂😂
Welcome….There are usually approximately 700 tabs open. I do not know which one is playing music. And apparently none of them can be closed!
But here is the strange part…There are also moments when everything becomes incredibly clear. I can suddenly connect years of information. Patterns appear. Something I studied long ago comes back. A conversation about healing opens a door in my memory. A creative idea arrives almost complete. A song, or a dozen appears……..A solution presents itself…
That is why I do not look at my brain only through the lens of what was damaged.
I also pay attention to what emerged afterward.
Disability and Diff-Ability
Years ago, while I was homeless, I talked publicly about something I called, Disability versus Diff-Ability. I eventually wrote a song about it too. Because I have never wanted my life to become a catalog of everything that went wrong with me. Those things are part of my story, yet they are not the entire story. Yes, there are things that are harder for me. There are days when my brain and body exhausts me. There are moments when communication becomes frustrating and some of you dimish it as me being “crazy.” There are times when overwhelm causes everything to become temporarily more chaotic…then you judge me on that 1 moment in time……
But there are also abilities I developed because I had no choice but to adapt…I became more creative. I learned different ways to solve problems. I became extremely sensitive to patterns. I learned to pivot. And I learned that losing one way of doing something does not necessarily mean the thing can no longer be done.
Sometimes it means….Find another road. That has become one of the central philosophies of my life.
Healing Does Not Mean Becoming the Person You Were Before
This took me a long time to understand. For years, I thought healing meant getting back to whoever I was before something happened.
Before the illness, the trauma, the brain injuries…before the losses……before life rearranged everything…….
But eventually I realized that Sometimes there is no going back. A wise man once said to me, “There is no future in the past!” That stuck with me.
And maybe there does not need to be… Healing can also mean learning how to live beautifully with the person who emerged afterward. I am not a perfectly healthy person. I still have challenges. I still have brain damage. I still lose words. I still become overwhelmed. I still have moments when my thoughts move faster than my ability to communicate them………..
But I am here. I create. I work. I garden. I help people. I make music. I build things. I learn. I teach. I laugh. I screw things up. I try again…….AND…That counts for something.
Actually…I think that counts for quite a lot.
I Have Never Wanted Pity
I do not tell this story because I want people to feel sorry for me. Quite the opposite. I have spent my life trying to find what I can do. Even during periods when I had very little, helping somebody else made me feel better. During homelessness, I still found ways to feed people and help people. When I become discouraged now, helping another human being is still one of the fastest ways to reconnect me with purpose.
That does not mean I want to be used. It does not mean I want to be lied to. It does not mean I have unlimited energy to give while everyone around me takes. I have learned that lesson too…
Helping people and having boundaries are not opposites. Love and boundaries are not opposites. Sometimes saying, “no more” is one of the most loving things we can do for ourselves.
I Am Not Looking for Followers
This is important. Let me make this clear:
– I do not want people beneath me.
– I do not want people following me.
– I do not want to control how another person thinks, worships, votes, dresses, loves, lives, or understands the Divine.
– I don’t want to be somebody’s boss, guru, savior, or authority over their life.
I want partners…….people working together…People teaching each other…People contributing what they are good at…People learning what they are not. People willing to build something where nobody has to become somebody else before they are allowed through the door. That is what community means to me.
– Not identical beliefs.
– Not identical brains.
– Not identical backgrounds.
– Not identical politics.
Cooperation without requiring sameness.
I Will Probably Trust Your Actions More Than Your Words
Another thing my life has taught me is that words can be beautiful and still mean nothing. People can say;
“I support you, I love you, I accept you, I want to help.”
And sometimes their actions say something completely different…So I pay attention to actions, energy, who shows up, who allows me to be myself and who immediately begins trying to edit me into something more comfortable for them…
I no longer fight for acceptance.
If someone decides that the way my brain communicates makes me unacceptable or inappropriate for them, I will not spend the rest of my life auditioning for their approval. I will pivot. In fact, I’ve gotten pretty good at that. 😂
Please Ask Before You Decide Who Someone Is
That may be the simplest thing I want people to take from this. If someone communicates differently from you…
ASK.
If their sentence confuses you…
ASK.
If they use a word differently than you…
ASK.
If their brain seems to jump around…give them a minute. If they need another attempt…let them try again.
Do not assume lack of eloquence means lack of intelligence. Stop assuming neurological injury means lack of ability. Do not assume unconventional communication means someone has nothing valuable to say. And perhaps most importantly;
Do not reduce an entire human being to the moment in which they struggled!
Some of us have fought wars nobody could see just to be able to participate in the conversation at all.
I Would Rather Be Known for What I Build
I don’t want my brain injuries to be the first thing people know about me. I don’t want diagnoses to become my identity. I would rather you look at what I have created. What I have survived. Who I have helped. What I have learned. What I am creating and still trying to build. I would rather be known for perseverance than impairment. Creativity rather than limitation. Contribution rather than diagnosis.
And yes…
probably for occasionally producing the most spectacular typo you’ve ever seen. 😂 I can live with that.
The Door Is Open – But You Have to Let People Be Themselves
The spaces I build are not about control. They are not about changing people. They are not about forcing anyone into my beliefs. I want people to be themselves. Actually themselves. In it’s entirely!!!
Not the version that keeps everybody else comfortable. Not the version somebody’s church approves. Not the version society rewards. Themselves.
And I ask for the same freedom. I believe everyone deserves to feel safe, heard, loved, and respected. Not just people who communicate perfectly. Not just people whose brains work conventionally. Not just people who believe the “right” things, or look the part.
Everyone!
I don’t think love means preaching at people. I think love is something we demonstrate:
– Feed somebody
– Listen to them
– Give them dignity
– Respect their boundaries
– Help when you can
– Allow them to be different from you without treating difference like a threat
– Actions
Those are the words I trust most. So if you have read this far, thank you. Thank you for taking the time to hear me rather than simply deciding who I am. And if you meet someone whose brain works differently from yours someday, perhaps remember this;
Different does not mean less.
Sometimes different simply means that person traveled an entirely different road to arrive at the same conversation. And they may have something extraordinary to tell you…if you give them enough time to find the words.
BE LOVE, don’t just talk about it. <3