No One Hands You a Roadmap

Hi, friend.

I'm really glad you found your way here.

If you're reading this, I'm guessing life has changed recently. Maybe you were just diagnosed. Maybe your vision has been changing for a while. Or maybe someone you love is navigating vision loss and you're trying to understand what they're experiencing.

However you got here, I want you to know one thing before we begin...

You don't have to figure this out alone.

I'm Kenisha.

I live with progressive retinal disease and genetic disorder. Now I am Navigating my “new normal” that includes significant and permanent vision loss, which has ultimately led to legal blindness and extreme low vision.

I'm not here to give medical advice.

I'm here to share what I've learned, what I wish someone had told me, and to walk beside you as a friend who's been there.

So grab a cup of coffee, get comfortable, and let's have a conversation.

No One Hands You a Roadmap

There are moments in life when you know everything has changed, even though the rest of the world keeps moving.

Cars continue pulling out of parking spaces. People rush into appointments. Someone laughs as they walk down the sidewalk. The coffee shop across the street keeps serving customers. Everything around you looks exactly the same, but inside, your world has shifted in a way you can't quite explain.

For me, that moment happened when I went to an eye check up at my ophthalmologist. After various years of visits to big box stores for my eye exam, I decided to make this next visit more personable. When he did the exam, he took a picture of my retina and showed me the picture, only to tell me “ This is your right eye retina, and it's almost completely dead, which means there is no sight there.” It was almost my whole eye.

I still remember sitting in my car after my appointment, staring out the windshield long after the engine should have been running. The doctor had explained my diagnosis, handed me a few pamphlets, and ended our conversation with words that sounded reassuring but somehow left me feeling completely lost.

"We'll continue to monitor it."

Then the appointment was over.

I walked out carrying a folder full of information, but no understanding of what my life was going to look like. I was crying.

Not because I had just been told I was losing my vision. 

But because I didn't know what came next.

No one handed me a roadmap.

No one told me what the next six months would feel like. No one explained how much of this journey had nothing to do with my eyes and everything to do with my heart.

There were no pamphlets about grief. No brochures about learning to ask for help. No checklist titled, "Here's how to tell your family that you're scared." There was certainly nothing that prepared me for grieving parts of my life before they were even gone.

Before my diagnosis, I had a plan. Actually, I had a lot of plans.

I was building my career, traveling to speak, leading systems change projects, writing, researching, raising my children, and dreaming about everything I still wanted to accomplish. Like most people, I assumed tomorrow would look a lot like today. I also thought in that moment that I would lose all of that, and not be able to do all the things I still do today. 

I will say I never imagined that something as ordinary as reading a menu in a dimly lit restaurant would someday become frustrating. I never thought I'd hesitate before driving somewhere unfamiliar or wonder whether I would recognize someone waving at me across a room.

Life doesn't usually announce that it's about to change, but in my case, it did. At that very doctors appointment.

For me, it began with strange symptoms that didn't make sense. I was able to start my specialist journey at one of the best eye clinics in the US at the University of Michigan Kellogg Eye center.  Eventually, I learned that  those symptoms led to a diagnosis of Acute Zonal Occult Outer Retinopathy (AZOOR) and Uveitis, and later I learned I also carried NMNAT1 and VCAN genetic variants associated with retinal degeneration.

I left the office knowing the names of my conditions, but not what they meant for the life I loved.

Would I lose all of my vision?

Would I stop driving?

Would I still be able to do my job?

Would people look at me differently?

Would I still recognize my children's faces years from now?

The questions came faster than the answers.

Like so many of us do, I turned to Google. I searched everything I could think of. I read medical journals I barely understood. I joined forums. I watched videos. I looked for statistics, treatments, miracle stories, and worst-case scenarios. Some nights I convinced myself everything would be okay. Other nights I was certain my life was over. The internet gave me information. I was one of 1,000 in the world

It couldn't give me peace.

Google could explain retinal disease. 

It couldn't explain why I suddenly felt embarrassed asking someone to read a menu.

It couldn't explain why I felt guilty asking my people to drive.

It couldn't explain why I kept pretending everything was fine even when I was terrified.

Most importantly, Google couldn't tell me that the feelings I was having were completely normal.

What I was really searching for, I realized, was someone who had already walked this road. Someone who could say, "I've been where you are, and while I can't promise this journey will be easy, I can promise you that you won't always feel this lost." One of the biggest surprises was discovering  that grief doesn't always look the way we expect it to.

Sometimes grief is obvious.

Sometimes it's quiet.

Sometimes it shows up when you realize you need brighter lights to read your favorite book. Sometimes it shows up when someone says, "Did you see that?" and you're too embarrassed to admit you didn't. Sometimes it shows up when you catch yourself pretending to recognize someone because explaining your vision feels harder than smiling and hoping they don't notice.

Grief isn't just about what you've lost.

It's about the future you thought you were going to have. And friend, if that's where you are today, I need you to hear this:

You're not weak.

You're grieving.

There's a difference.

One of the lessons I shared in my TEDx Talk is that we often celebrate resilience without asking a harder question: What did someone have to survive to become so resilient?

That question is personal for me. I learned persistence early—through childhood adversity, navigating race and identity, and later adapting to significant vision loss. Many of those adaptations became strengths: reading the room, overpreparing, figuring things out on my own, and continuing even when I was exhausted.

But survival and thriving are not the same thing.

Sometimes what we praise as resilience is actually adaptation to environments that were never designed for us to thrive. That realization led me to a question that has become central to my work:

What are we asking people to be resilient to?

If people must continually become stronger just to navigate our workplaces, schools, courts, child welfare systems, and communities, we cannot stop at celebrating their resilience. We also have to change the conditions requiring so much resilience in the first place.

Vision loss taught me that lesson in a deeply personal way.

People would tell me, "You're so strong." What they didn't see were the moments I cried in my car. The nights I stayed awake wondering what my future would look like. The frustration of learning new ways to do things that used to come naturally. The quiet fear that maybe I wasn't handling any of this as well as everyone thought.

Resilience didn't arrive all at once.

It was built one ordinary day at a time.

One question at a time.

One adaptation at a time.

One act of courage at a time.

And sometimes, courage simply looked like getting out of bed and trying again.

If I could sit across from the version of myself who had just walked out of that appointment, there are a few things I'd say. I'd tell her to stop trying to figure out the rest of her life before dinner. I'd tell her that she doesn't need to buy every piece of assistive technology she sees online. I'd tell her that asking for help isn't giving up. I'd tell her that there will come a day when she laughs again without feeling guilty. I'd tell her that blindness doesn't erase purpose.

It simply changes the path.

Most of all, I'd tell her that there is an entire community waiting to welcome her. She just hasn't found them yet. That's why I created this series. Not because I have all the answers. I don't. I'm still learning every single day.

Technology changes.

My vision changes.

Life changes.

But if I can make your first few months feel a little less lonely than mine did, then sharing  my story is worth it. Over the next several conversations, we'll talk about the things no one included in those pamphlets. We'll talk about the questions your doctor may not have time to answer. We'll talk about finding resources, building your village, navigating work, learning new technology, and discovering that independence doesn't disappear—it simply begins to look different. We'll celebrate small victories. We'll acknowledge hard days. And we'll remind each other that life doesn't end with a diagnosis.

Sometimes it's simply inviting us to write a different chapter.

One we never planned to write.

But one that can still be filled with purpose, joy, connection, and hope.

Before You Go 

Friend, today I don't want you to spend another three hours searching the internet. Instead, I want you to do something much simpler. Find a notebook, the notes app on your phone, or even the back of an envelope. Write down one question that's been sitting in your heart since your diagnosis. Just one. You don't have to answer it today. You don't even have to know who to ask. Sometimes healing begins not with finding all the answers, but by giving yourself permission to ask the questions.

Our Next Conversation

Your Doctor Isn't Going to Tell You Everything
The Questions I Wish I Had Asked

Until Our Next Conversation...

Friend, I know this journey can feel overwhelming. Some days you'll feel hopeful. Other days you may feel frustrated, scared, or exhausted. All of those feelings are welcome here.

You don't have to figure everything out today. You don't have to have all the answers. Take one step at a time, give yourself grace, and remember that asking for help is a sign of strength, not weakness.

Most importantly, I want you to remember this: vision loss may change how you experience the world, but it does not change your value, your purpose, or the life you're still capable of building.

I'm honored to walk alongside you.

With you every step of the way,

Kenisha 💙