If you have ever uttered these words to someone, then you’re in time out buddy. 

NF is vicious. Having a dyslexic chromosome 17 or 22 – meaning there is a misspelling in the gene which causes a loss of proteins that carry very important information, is what results in NF1, NF2-SWN, or SWN – the group of disorders collectively called “Neurofibromatosis” or “NF”.

This can cause a very broad range of problems, from tumors on the skin, loss of, or damage to vision, hearing, balance, or cognition, and a million different things, including, YES, cancer.

People living with or loving those with NF live with this reality all day, every day.  

Becoming entrenched in a rare disease community like NF is an interesting beast. 

On any given day, I could have a conversation with someone on the other side of the world and we are using translation apps to share resources, coffee with an NF mom who lives nearby, texting or video chatting with NF besties on the other side of the country – using voice to text to overcome not challenges with shared language, but hearing.

These conversations and friendships bring SO much joy. There is connection, encouragement, information sharing, and comradery. 

There is so much comfort in knowing I am not alone, and in having people who really get me.

At the same time, I often feel BIG FEELINGS – anger, sadness, frustration, loss. The frequency that we who invest in relationships with others in our world must watch people we love go through extreme pain, physical losses, major surgeries, insurance battles, or social cruelty is extreme. 

It is not for the faint of heart. 

As hard as it is, I wish everyone could know the strength of this community – and be encouraged as they go through their own hard battles. Comparison is not helpful, but perspective is. 

I pray for a day when my friends might be restored, made whole and brand new – my personal faith gives me hope of this future and on most days, a measure of peace I can only describe as supernatural. 

Other days, I am just mad and I hate NF so much.

While I wait for our tears to be wiped away, I look for ways to be a good friend. Listening, giving space, waiting, MUCH PRAYER….and gifts of dark humor, silly stuffed avocados, poetry, and presence. 

I would rather not watch people I love suffer, but the alternative is not knowing the best humans you could hope to know.

This is hard, but I can do hard things – especially if I have my friends to do it with me. 

I will leave you with one of my own poems

“A Poem for my Friend”

Her world has narrowed, sound muffled, vision dimmed, 

but her arms stretch wider – her eyes see more clearly,

that which carries her voice over river and mountains,

Speaks of strength that is NOT her own

Watch her turn quiet, for now, while in her stirs a storm

Confusion, loss, lament

Tears that will water flowers for bouquets, 

roses that roar of her grace. 

And tell the world she is not done creating beauty from ashes. 

If this message resonates with you, drop a comment.