Penny from Heaven: Q&A with a Trigeminal Neuralgia Warrior

Penny from Heaven: Q&A with a Trigeminal Neuralgia Warrior

There’s a story from above
that says pennies are a sign of love
from angels who want us to know
how much they care for us below.
They send pennies down to earth
for us to find and know our worth.
This Penny From Heaven is meant just for you
to know that you are loved and watched over too.
So wear your penny and know this is true:
It’s from an angel who’s grateful for you.

I first learned about Michele’s story on Instagram, when I discovered her story Penny from Heaven. The poem above is taken from her story. I will include the link to the story at the end, and would encourage you to read it, if you have a moment.

Most of us recognize the month of May as Mental Health Awareness Month. However, as I recently learned, it is also Brain Tumor Awareness Month - which makes it perfect timing to share Michele’s story.

Michele is a brain tumor survivor who has been diagnosed with Trigeminal Neuralgia (TN) and Anesthesia Dolorosa (AD) - both are rare, chronic pain conditions. I am hoping that by sharing Michele’s story, it would raise awareness and provide opportunities to support the survivors.

Monika: Michele, thank you so much for taking the time to have this conversation. For many of us who have not heard of these terms, would you mind explaining a little bit about what they are, and how they are affecting you?

Michele: Trigeminal Neuralgia and Anesthesia Dolorosa are conditions that affect the 5th cranial nerve. It’s the largest cranial nerve and carries sensory information from the face to the brain and controls the muscles involved in chewing. My CN5 was damaged during brain surgery to remove a brain tumor. It was damaged in such a way that I not only have TN, but I also have AD.

What does this mean? It means that I can no longer feel the left side of my face, including teeth and tongue, but the affected areas are constantly in pain. The pain consists of nonstop tingling (like your foot fell asleep), being stabbed by thousands of pins, stabbed repeatedly, electrocuted and muscles to be ripped from my face. There are more sensations, but I think this paints a descriptive picture. This is all happening even though I cannot feel that side of my face. When I was told I had this, it was a surreal out-of-body experience. It was bad enough to get a phone call that I had a brain tumor but to get this diagnosis post-op brain surgery was something that was extremely hard to accept—especially since it has no cure. Brain surgery also left me deaf in my left ear, and I was recently diagnosed with another brain tumor. I still haven’t fully accepted it all. Acceptance is a work in progress. I’m a work in progress, but aren’t we all?

Monika: I completely agree that we are all a work in progress. I imagine coping with TN and AD is not only physically challenging, but it could also take a toll on you psychologically. I really admire that instead of giving in to the pain, you choose to fight it by spreading awareness about these rare conditions, and also by establishing an online community where others with similar conditions can connect and support one another. How do you find the strength - not just to cope with your conditions, but also to thrive?

Michele: It’s extremely challenging living with this condition. It’s been labeled the “suicide disease,” which tells you everything. Every morning I wake up and pray for a “tolerable” pain day. Some days I truly don’t think I can make it through, but I rely on prayer, family, friends and the online community to keep me going. That sentence makes it sound easy, but it’s not. Even with their support, I struggle. In every aspect I struggle. It’s so hard to function with a condition like this especially when you had a life pre-diagnosis — a life which you have to now mourn. With that being said, I’ve been focusing on acceptance. I have to accept my new normal. What choice do I have? I have this condition and, yes, I have days—sometimes weeks—where I just exist, but the other days I do my best to live my life. I’m not sure I’m thriving, yet, but I aim for that.

And regarding awareness, I just started becoming active and very passionate about raising awareness. I don’t know if they’ll find a cure within my lifetime, but I can’t sit around and do nothing. Especially now with social media, we all have platforms, and I’m going to use mine. I’m currently in the process of organizing all of the TN merchandise I purchased and getting it ready to ship out to fellow TN warriors. I’m very excited about this project and hope, through my actions, that a few more people will learn about this condition.
I have to find a balance, though, between raising awareness and not going to the extreme that it defines my life. Does that make sense?

Monika: Absolutely, it is important to have such balance in our lives. Going back to your your story, Penny from Heaven, I find it so inspiring because it is about finding gratitude and meaning in your life, even in the midst of dire situations. How do you find the strength to find reasons for gratitude, when things don’t seem to be going well?

Michele: Thank you so much, Monika. My Penny from Heaven story still gives me goosebumps to this day. I can’t even begin to describe to you the feeling in that room when I gave Leslie that necklace and what happened thereafter. At that moment, I knew that God put me on a path—even though extremely dark—to bring a necklace to a woman I never met so that she could reconnect with her deceased sister. An overwhelming peace came over me, and I couldn’t think about my situation. What I felt was gratitude. I felt so grateful that I was chosen to give this gift to Leslie. I looked back on my life and thought, “Every single moment in my life God led me to her.” It was beyond powerful.
I think about that day quite often as it is a reminder that I’m on a journey that has purpose and for that I’m extremely grateful. It might not be the path I would’ve chosen, but it’s my path and I can’t wait for my next “Leslie” moment.
I do hope your readers visit my website to read the story in its entirety. I don’t know anyone that has read it and hasn’t felt something. Whether it’s tears or goosebumps, the reader comes away touched because it’s such a powerful read.

Monika: I agree, and I do hope our readers will find their way to reading Penny From Heaven. In addition to establishing an online community, you are also raising funds to spread awareness on Trigeminal Neuralgia. Could you tell us a little bit about your fundraising campaign, and how people who are interested can contribute?

Michele: This all happened so quickly. I decided to make a website and start a social media account. From there, I found an online community of people with the same condition, and it just snowballed. I reached out to a friend who has connections on Capitol Hill. I did an Instagram LIVE with my friend Jason Thompson. And, then I thought, “I should start making ‘awareness’ merchandise boxes,” and that’s where I’m at.

I didn’t want to charge per item, so I decided to ask anyone in the community who would like a box to donate $25 or more—even though the box would most likely retail for roughly $75. It wasn’t and still isn’t about making money for me on this project. It’s about raising awareness, and, most importantly, I didn’t want any fellow TN warriors to go without a box if they wanted one. That’s when I realized, I just couldn’t afford to do this on my own. Many in the community are on permanent medical disability and that’s how the fundraiser started. I put out an ask for people to donate $25, or whatever they chose, to essentially sponsor a box for a TN warrior. If there was any left over money, that would go towards purchasing more social media ads and merchandise.
I’m just doing the best I can. I’m trying to make a difference. I hope I am.

Monika: Thank you so much Michele, for sharing your story with us, and for being so open in sharing your personal experience. From following your Instagram journey, as well as your website, I believe you are making a difference to people who have crossed paths with you, regardless whether they are a Trigeminal Neuralgia Warrior or not. I wish you the best with your campaign for Trigeminal Neuralgia Awareness.


If you are interested in learning more about Trigeminal Neuralgia and supporting Michele’s campaign, please visit her website and you can also follow on Instagram @rarediseasewarrior
Michele’s story, Penny From Heaven, can be found here

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