“And we are put on earth a little space that we may learn to bear the beams of love.”
The truth of the matter is that you will likely hear my giggle long before you see me.
I believe that the world would be a much better place if everyone practiced bearing the beams of love in all that they do. A William Blake enthusiast, I am trying to find a scientist who will agree to bring him back from the dead so that I could have at least one cup of coffee with him. (Hey Feinstein Institute peeps, can there be a lab just for this? Please?)
I’m a 29-year-old Jersey girl that gets overly annoyed by every other car, believes speed limits are just “guidelines,” and that more people need to be educated on the purpose of the left lane.
I am a lover of science, a seeker for the sake of seeking, a moon-bather, stargazer, spreader of smiles, and giver of giggles.
Also, I underwent a clinical trial for Vagus Nerve Stimulation for Crohn’s disease — and whattaya know, it worked!
When I was 13, I was diagnosed with Crohn’s disease and Seronegative Enteropathic Arthritis.
I’ve always made it my priority to fulfill my potential — I will never be defined by my limitations, but instead, by what I’ve learned to do despite them. I decided early on that Crohn’s disease would add to my life and not take away from it — Crohn’s has taught me empathy, perseverance, and patience. It’s taught me that life is so precious. I have learned through this disease that we all, as William Blake said, must “bear the beams of love” in all that we do. It’s taught me how to be an advocate for myself and for those even more vulnerable than me.
I never thought I’d say this — but my Crohn’s disease has been a gift; it’s made me realize that time is finite and days are never long enough, and I want to savor life’s every moment. I got to be old while I was young — and that’s quite a gift when you think about it.
I’ve been on and off of Prednisone ever since diagnosis — generally at 40 to 60 milligrams during really bad points, and then at 10 or below for maintenance. That was really the only thing that held me over.
Until now, I’ve never been in remission. I’ve been on every biologic and DMARD under the sun, Remicade, Humira, Cimzia, Entyvio, Enbrel, Methotrexate, Stelara, Simponi, Imuran, 6mp, Pentasa, Entocort, Uceris, Sulfasalazine, Asacol, Plaquenil, Celebrex, and Lialda.
None of them worked for me — after several weeks, my body developed antibodies that prevented each from working. Due to chronic Prednisone use, I also have Osteoporosis. At 29, I have the bone density of someone three times my age.
I’ve researched holistic health, herbs, meditation, and nutrition to heal naturally.
Despite these efforts, my body remained a powerful entity at war with me.
At the beginning of 2017, my doctors in NYC ran out of options for me and told me that my life would be lived completely dependent on Prednisone.
With a sedimentation rate of 85 and legs so swollen that I could hardly walk, I remembered Dr. Tracey and a Facebook Live interview by Huffington Post that I had seen in 2014 regarding Vagus Nerve Stimulation. At that time, when I reached out, though he was incredibly empathetic and gracious, there wasn’t yet a Crohn’s trial happening…
…. but that day in 2017 that I was told there was nothing left, I went online and sure enough — a trial was just recently posted.
The only catch was this: we had to find a way to live in the Netherlands for six months.
So, Sean and I packed our bags and kissed our puppies farewell for several months, and left our life in New Jersey to head to the Netherlands to partake in this trial.
I had surgery for the implant on June 22, 2017; they implanted a battery into my chest and a lead that attached to the battery on one end and a coil on the other end, in my neck on my Vagus Nerve.
My device is named “Murph,” after the character in Interstellar. In the movie, Murphy’s Law is reimagined and redefined to “anything that can happen, will,” rather than the idea that “anything that can go wrong, will go wrong.” If my life has been anything, it’s been proof that anything that can happen, will happen — and now that’s even truer.
After only eight weeks of stimulation, I was in remission and working out every day — something I hadn’t been able to do in 15 years. My life has done a complete 180* — I didn’t know what it felt like to feel so good until Murph came along and showed me.
It’s been an honor to be able to share my story with the hope of advancing access & expanding research. I’m so excited to witness this journey of bioelectronic medicine as it continues to unfold.
The Vagus Nerve is called the “wandering nerve” — which makes sense because I guess I’m a bit of a wanderer myself.