Still Here. Still Thriving.

Still Choosing to Thrive: Growing Older With Neurofibromatosis

I have lived with neurofibromatosis for my entire life, but living with NF has not always looked or felt the same. When I was younger, my symptoms were easier to hide. I could move through the world without everyone knowing what was happening beneath the surface. I pushed the signs of NF into the background...And I got away with this, until my OFFICIAL DIAGNOSIS in 2007.

But aging has changed that...I can no longer push aside the symptoms.

As I grow older, NF seems to demand more of my attention. New symptoms appear, familiar ones become harder to ignore, and my body no longer recovers as easily as it once did. Pain, exhaustion, physical changes, and the uncertainty of what may come next have become a larger part of my life. Menopause and the natural aging process have added another layer, making it difficult at times to know where one struggle ends and another begins...One exacerbates the other. 

There are days when I look in the mirror and barely recognize the body looking back at me. I see the evidence of time, but I also see the evidence of NF. Every new symptom can carry a wave of fear.  The progression of NF seems cruel and unfair.

What am I learning from this?  What's the point of it all?  Why won't God just cure me?

Those questions can be exhausting.

At my core, I am still determined to THRIVE. That word means something deeply personal to me. Thriving does not mean pretending that everything is fine. It does not mean smiling through pain or denying the fear and frustration that sometimes settle into my heart. Thriving means continuing to live, love, laugh, and hope—even when NF makes those things harder.

Some days, thriving looks like strength and confidence. It looks like showing up for the people I love, enjoying time with my family, and refusing to let a diagnosis define the boundaries of my life.

Other days, thriving simply means getting out of bed.

It  also means allowing myself to rest without feeling guilty. It means admitting that I am tired. It means crying when I need to cry and reminding myself that one difficult day does not erase a lifetime of courage.

As I grow older, I also find myself understanding my mom in ways I never expected. She carried her own anger, fear, and frustration surrounding neurofibromatosis. When I was younger, I could not fully understand why she seemed so bitter or why she blamed God for the pain NF brought into our family. Her anger affected all of us, and for a long time, it was difficult for me to look beyond it.

Now, on my hardest days, I understand her a little more.

I understand what it feels like to be angry at a condition that takes without asking. I understand the helplessness of watching the people you love struggle. I understand the guilt that can come from knowing a genetic condition has been passed from one generation to the next. I understand how fear can turn into frustration and how frustration, when carried for too long, can become anger.

But understanding my mother does not mean I have to become consumed by the same anger.

I refuse to give NF that much power.

I will acknowledge the hard days. I will be honest about the pain, the fear, and the ways my body is changing. I will not shame myself for feeling discouraged. But I will also keep looking for beauty. I will keep holding my family close. I will keep celebrating ordinary moments, because I have learned that those moments are often the most amazing.

Neurofibromatosis is part of my story, but it is not the whole story.

I am a woman living with NF. I am also a wife, a mother, a soon to be grandmother, a teacher, and a friend. I am someone who has carried fear and still chosen hope. I have watched my body change and still found reasons to be grateful for the life it allows me to live.

Aging with neurofibromatosis is not easy. Some days, I feel strong enough to face anything. Other days, I completely understand my mother’s frustration and anger.

But even then, somewhere beneath the exhaustion and fear, my strong spirit remains.

I may crumble. I may grieve. I may need to stop and rest.

But I refuse to give in.

I am still here.

I am still growing.

And even on the hardest days, I am still THRIVING!.