I Am Done Waiting for Permission to Live

Sandy Beach Decor has always been about more than decorating a room. It is about creating a life and a space that feel like your own—even when life changes without asking your permission.

Today I am sharing something more personal: what the past year has taught me about illness, grief, self-advocacy and choosing to live fully inside a life I never expected.

I Am Done Waiting for Permission to Live

I have learned to trust myself.

I know my body better than anyone who spends a few minutes looking at my chart. Asking hard questions does not make me difficult. Demanding answers does not make me dramatic. Refusing to be dismissed does not make me angry or unreasonable.

It makes me my own advocate.

And becoming my own advocate has meant more than fighting insurance companies, correcting medical records or demanding that someone take my pain seriously. It has meant reclaiming the parts of myself I thought illness had taken from me: my confidence, my curiosity, my humor, my anger, my hope and my right to decide what kind of life I still want to live.

I am still sick. I am still searching for the right treatment and trying to understand what my future looks like. I am grieving the career I spent more than half my life building. I am grieving the version of myself who could get up, push through and do whatever needed to be done without calculating how much pain it would cost me later.

But grief is not the same as surrender.

I am not going to pretend this journey has been beautiful. Some of it has been brutal. It has humbled me, enraged me and broken my heart. There are still days when I sit with a heating pad and wait for my body to give me a little room to breathe.

But there are also days when I choose to take that room.

I am not a perfectly polished survivor with a neat little lesson tied around everything. I am a saint and a sinner. I am loud, emotional, stubborn and still standing. I have cried, sworn, prayed, questioned everything and gotten back up more times than I can count.

And somehow, I remain relentlessly optimistic.

My life did not end when I got sick, but the life I knew did. That loss is real. So is the life I am building now.

I am learning that living fully does not always mean doing everything I used to do. Sometimes it means honoring my limits without letting them define me. Sometimes it means resting without guilt. Sometimes it means saying no. Sometimes it means saying yes to something that scares me, makes me laugh or reminds me that I am still here.

I also know I would not have survived this year without the people who stood beside me.

My primary care provider has been one of my greatest supports. An advocate nurse from my insurance company has listened to me absolutely lose my mind and still stayed present. My friends—the family I chose—have gotten me through with humor and grace. My sisters have rallied around me and supported me in a whole new way.

They reminded me that I was more than a diagnosis, more than a claim number and more than a person waiting for someone else to decide whether I deserved help.

I wish I had never needed to learn how to fight this hard.

But I have learned. I have found my voice, and I am not giving it back. I am going to say more, speak louder and take up the space I was taught to apologize for occupying.

Because the end of this is the same for all of us: we die.

So I am done waiting for permission to live.

I will wake up in pain and still look for something worth waking up for. I will rest when I need to, fight like the psycho I am and choose joy whenever I can find it. I will be uncomfortable. I will do hard things—not to prove my worth, but because I am still alive and I want to feel the full force of being here.

I will not let illness, bureaucracy or anyone else convince me that my life has to become smaller than my spirit.

Live While You Are Alive

Say the thing. Ask the question. Leave the room that keeps diminishing you. Love your people loudly. Do the hard thing just for the rush. Make the appointment, take the trip, wear the outfit, tell the truth and stop waiting for someone else to certify that your life is worth living.

I have spent a year fighting to be heard.

Now I am choosing to hear myself.

Thanks for coming to my TED Talk. 😉

The things we surround ourselves with cannot fix everything, but they can remind us who we are. I want every piece I create—and every story I tell—to help someone feel more at home in their space, their life and themselves.

Thank you for being here and allowing me to share the person behind Sandy Beach Decor.