Schwannomatosis

One of the worst feelings in the world is knowing that something’s wrong with you, but being unable to convince doctors that it’s true. In all, I spent about a decade struggling through a string of misdiagnoses by complacent doctors, practicing half a dozen specialties. Thanks to the torturous hip and back pain I was having, a chance MRI led to the surprising discovery of over 30 tumors. To say I was shocked was an understatement, but I was finally on the way to a diagnosis.

Following more consults neurologists and neurosurgeons, they all echoed the same unwelcome news: No options. Not for surgery, chemo, radiation, or CyberKnife. After DNA testing and an appointment with a geneticist, Schwannomatosis was the result. The main symptoms are uncontrollable pain, concentrated in my spine, hips, legs, and mid/lower back. The pain is almost indescribable. It shoots, stabs, burns, and aches. I often feel like I’m wearing a “lava suit” where I have a hot neuropathy all over, hot spots that burn even more. In general, it hurts to sit, stand, lie down, roll over… it’s a constant battle to find the “least painful position.” I have a constant level of pain in my hip that never wanes. I have a brilliant pain management doctor who does all he can to make me comfortable, while I hope and pray for a treatment or cure to come around.

• Severe chronic pain
• Gait Abnormality
• Extremely painful deformity in my left flank
• Crippling pain down left leg and into foot and sciatica
• Medically induced anxiety disorder and major depression
• Neuropathy throughout body

• 30+ inoperable Schwannomas in my left flank, hip, leg, lower back, spine
• Large tumor at T3-T4 pressing against spine, causing POTS-like symptoms, fluctuations in heart rate and blood pressure, problems breathing
• Extreme sensitivity to changes in weather causing flare ups
• Migraine headaches
• Involuntary muscle spasms/contractions
• Severe claustrophobia, requiring general anesthesia for MRI’s

• No surgical or tumor-treatment options are available to me
• I have had enough MRIs that I make compass needles spin

Brad and his mom are lifelong musical fans, so New York City—and especially Broadway—was a dream destination for them both. But with more than 30 tumors in his back and legs, Brad lives with severe chronic pain and fatigue that make walking long distances difficult. We knew the amount of walking needed in NYC could be challenging, so accessibility and thoughtful pacing were key.

To help him fully enjoy the experience without being held back by his condition, Brad invested in a lightweight, foldable electric wheelchair for the trip, giving him the freedom to explore without sacrificing his comfort.

In addition to their Broadway shows, Brad and his mom spent time at some of NYC’s most iconic museums, soaking in the art and history they both love. And since Brad is also a huge train enthusiast (but had never actually ridden one) we added a day trip to Philadelphia by Amtrak so he could finally check it off his bucket list.

Brad’s journey was the perfect reminder that with the right support in place, it’s absolutely possible to experience new places—even ones that once felt out of reach.

Being Positioned created a 6-day itinerary for Brad to eat, explore, and sightsee in beautiful New York City.

After the first Zoom call with the team, I realized that the biggest blessing in all of this was working with such a caring, enthusiastic, and compassionate team and “having” to let them handle the details. Knowing that Christina, Rebekah, and Michaela were handling all of the “worrying” for me… I truly felt blessed having a whole team behind me, with the sole purpose of making sure that my time could be as meaningful and stress-free as possible.

Something that I realized through this experience is that all of the overwhelming emotions are what has caused me to STOP doing things. I’ve stopped traveling. I’ve stopped putting myself out there socially. Yes, there’s pain with movement and mobility challenges to overcome… all of those things have added to the list of excuses following my “no’s.” My heart got worked on a little during this journey, and my propensity to say “no” and to “wish I could do the things I used to…” Well. That’s changing now.

There were so many great moments in this trip. Some of my favorite moments weren’t typical “touristy things.” (Don’t get me wrong. It was amazing seeing The Lion King and Wicked on Broadway. The Statue of Liberty.) But the things that really left an imprint? Experiencing the sorrow and strength memorialized at the 9/11 Museum. Seeing how kind and resilient and respectful everyday New Yorkers are. Cab driver after cab driver who went above and beyond. Doormen, bellmen, police officers, ferry operators, ticket takers, ushers, waiters… I could go on. The people of NYC and the kindness that they showed me is something that will stick with me long after my IheartNYC shirt wears out.

TIMES SQUARE • STATUE OF LIBERTY • TRAIN RIDE TO PHILLY • WICKED • 9/11 MUSEUM • LION KING • AMERICAN MUSEUM OF NATURAL HISTORY • KATZ DELI

I now realize that while zip lining and scuba diving probably aren’t very accessible, there’s a big world out there that is, full of wonderful and kind people that want to help me make the most of my experience, even if it might not look the same as someone else’s. Being Positioned made me realize that. To Christina and her team, as well as the generous donors that made this trip a reality: you’ve made a real difference in my life journey, and this experience has given me the opportunity to reflect on so many things. My promise to you is that I will not let your gift be in vain, and I will be open, fearless, and willing to go wherever it is that I’m being positioned.

Each person diagnosed with Schwannomatosis experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.

To learn more about Rare Genetic Disorders, click below.