Marti’s MS Life

09/04/2026

I spent a long time believing that forward was the only direction that counted. That if I was not moving, producing, pushing through, I was falling behind.

And when you have MS on top of that mindset, you will run your body into the ground before you ever give yourself permission to stop.

These feet have carried me through a lot. A Disney marathon, airports, stages, doctor’s offices, hard days where just getting out of bed was its own accomplishment.

But the thing nobody tells you is that your body has been communicating with you the entire time. Every ache, every wave of fatigue, every moment your balance shifts, that is your body talking. And for a long time I was not listening.

I am listening now.

I know when to keep going and I know when to stop. And choosing to stop is not weakness, it is the reason I am still able to keep going at all.

If you have been treating rest like something you have to earn instead of something your body is asking you for right now, I want you to reconsider that. Because the push is not always the flex we think it is. Sometimes the smartest and bravest thing you can do is be still.

09/03/2026

Baddies with multiple sclerosis be like...

Started cleaning the kitchen with the energy of a woman who was about to get her entire life together and twenty minutes later I am sitting on the floor next to the mop bucket having a full negotiation with my body about whether we are finishing this or not.

And the part nobody sees is that I planned for this. I waited for a good energy day. I cleared my schedule. I told myself today was the day I was going to get ahead on something as simple as my own house, and my body still said no, not today.

This is what people do not understand about MS. It is not that we cannot do things. It is that every single thing we do has a cost, and we never know the price until we are already in the middle of it. You budget your energy like money you do not have enough of, and sometimes you still overdraft before noon.

If you are the woman who has had to sit down in the middle of something you used to do without thinking, who has rescheduled the same task four times because your body would not cooperate, who has felt like a stranger in her own home because the simplest things now require a strategy meeting with yourself, I see you.

You are not lazy. You are not failing. You are a woman doing extraordinary things inside a body that changes the rules without warning. And you deserve to be around other women who already know that without you having to explain it.

08/31/2026

Black women with MS deserve luxury. And I said what I said.

Not luxury as excess or indulgence for the sake of it. Luxury as the highest quality of care, experience, and attention directed at a woman who has been navigating one of the most complex experiences in healthcare while the system around her looked the other way.

We are diagnosed later, believed less, studied less, and given fewer resources. We have been handed tools that were designed for someone else and told to make them work. And we are supposed to be grateful for the bare minimum.

I am not interested in that anymore.

I think about the Black women I know living with MS who built careers and families and communities while managing a disease that most people around them do not fully understand. Who show up every day with extraordinary grace and never hear anyone stop to ask what it actually costs them.

Those women deserve the absolute best that exists. Not someday and not as a reward for surviving. Right now as a baseline.

The system that owes us this level of care is not coming to deliver it. So at a certain point you stop waiting and you build the thing yourself. And that is exactly what we did.

Something built from the ground up with you at the center is coming.

Full article on Substack this week. Link in bio.

08/24/2026

08/21/2026

When you got diagnosed with MS, I know a part of you felt like you got handed a life sentence.

Not something that ends you quickly but something that asks you to keep living inside of it every single day, with no finish line and no version of this where it is over.

And the hardest part is that most people do not understand the weight of that because you do not look like you are carrying anything at all.

You look fine and strong and like a woman who has it all together, and nobody stops to consider that what they are actually looking at is someone who has mastered the art of functioning inside something that never lets up.

This is not something we are getting through. This is something we are living with permanently, and that requires a kind of endurance that does not get nearly enough acknowledgment.

I know what it feels like to carry that weight in rooms where nobody else can see it.

But I also know what it feels like to walk into a room full of women who already understand because they are living it too. Where you do not have to explain what a flare costs you or why you cancelled or what it took just to show up today.

The weight does not disappear in those rooms but it gets distributed across women who know exactly how heavy it is, and that changes everything about how you carry it.

You deserve that. A space where your endurance is met with understanding instead of admiration from people who have no idea what they are actually looking at. That space is being built with you in mind, and in a few weeks I will be announcing dates and details for the first retreat ever created for Black women with MS. Stay close.