By Rebecca Kerzner
My name is Leah Sherman, and I’m a senior majoring in speech pathology and audiology, with a minor in elementary education, in the hopes of going into high school special education.
I was 15 when I got sick. The disease is called Neuromyelitis Optica, or NMO for short. It’s a rare demyelinating autoimmune disease where my b-cells eat away at the myelin sheath that cover my optic nerves and spinal cord. I was blind, I couldn’t walk, and I couldn’t urinate. I had holes, or lesions, in my spinal cord. This all happened on February 24, 2012, when I was just a sophomore in high school.
On that day, I had slept over at a friends house with a little bit of a headache behind my eyes. I just blamed it on the fact that we didn’t get a lot of sleep, but the day after that, I woke up with a little bit of blurry vision. My parents were concerned, so we went to the opthamologist who said that it was just a migraine, and gave me some meds. I took them and they didn’t really do anything. The next morning, a Sunday, I woke up at 4:15 in the morning with excruciating pain. It felt as if rocks were placed behind my eyes and I had a pounding headache. My vision was more blurred than ever before at this point. My parents took me to the ER where the doctors assumed it was still a migraine. They gave me some meds and an MRI of my orbits and brain, which showed my optic nerves were swollen, giving a diagnosis of optic neuritis. It had to be caused by something, so the doctors wanted to check that out and decided to do a spinal tap, and I was admitted to the PEDS floor for a week.
I was released from the hospital for two weeks. In that time span, my body completely deteriorated. I went to bed one night with a fever, and I woke up the next morning completely blind: I had 20/400 in my left eye and totally dark in my right. My parents were freaking out, but I was relatively calm about it. My philosophy is that when things aren’t in my control, I don’t stress over them too much. A few days later, I went to bed with another fever, and the next morning I woke up with tremors and some vocal tics.
A few days later, I was volunteering for Friendship Circle. I didn’t feel too well and fell asleep in the car on the way back. When I woke up, I lost the ability to use my legs. It felt like my bones were being snapped in half and crunching. I felt like there’s was a fire truck running over my legs. There is no number on the scale of one to ten to describe the amount of pain I felt at that moment.
I wasn’t scared, but there were moments when I wanted it to stop because I didn’t understand why it was happening. I just wanted to be normal and have everything be normal; to just go to school with everyone else and be with my friends. It was the only consistency I knew.
A few days later, I went to a hospital to get a second opinion. While we were in the office, I noticed that I was having a difficult time peeing. Being a 15 year old, I obviously wasn’t going to tell anyone because I was embarrassed. While meeting with the doctor, he asked if I was having a hard time urinating. Shocked, I said yes. Concerned, he said that we should come back tomorrow to be evaluated and then admitted to the hospital.
I went to the hospital the next day, with no bladder function, excruciating leg and eye pain, blind, and shaking. After running another spinal tap, the results showed an issue: in the span of three weeks, my white count was elevated from 5 to 92. Additionally, my myelin sheath was almost gone. Once the myelin sheath is gone, there is no scientific way for it to grow back at all.
The following morning, I went back to my local hospital and was admitted for two weeks. My days were filled with occupational therapy, physical therapy, and plasmapheresis — a procedure where my blood was taken out of my body, cleaned of all the plasma, and put back in. With all of this, I was able to walk using a walker, and after five days of needing a catheter, I regained the ability to urinate.
Throughout this whole experience, my relationship with God deeply strengthened. Every night, Rabbi Amzalek, the rabbi working in the hospital, would come in and talk to me about life, Torah, Chassidus, and souls. He would stay there for four hours, until I fell asleep, telling me all these things. It wasn’t until I got to Stern that I had realized how much I had learned from him. In my first year, I was in Rabbi Hajioff’s Intro to Judaism class, and something in my mind clicked. I was able to quote the source we were learning to myself, and I realized that the rabbi that had sat with me had told me the very same words. Even now, I’ll read about a parsha or a little Chassidic insight and I’ll remember the whole story as I’m reading it, realizing again it is from that rabbi in the hospital.
I was officially diagnosed on April 13th, 2012, by the leading Neuromyelitis Optica (NMO)doctor at Mayo Clinic. With one sentence, my life was forever changed: “While your blood tests continuously come back negative, I do believe that this is indeed Neuromyelitis Optica.” No matter how prepared you are for anything, nothing can prepare you for being told that you are actually sick. So I sobbed. I sat there and I sobbed. After all the time I had spent in the hospital, I was truly sick with something that would affect me for the rest of my life.
To put this into perspective, according to my doctors 500,000 people in the world are diagnosed with NMO. When I was diagnosed, NMO was most prevalent in Japanese men over the age of 40. Last year, I had the opportunity to attend an NMO convention at NYU, in which the doctor’s redefined the diagnostic criteria for NMO, including classifying NMO as a spectrum disorder (NMOSD), with the primary affected population being Japanese women over the age of 40.
In this appointment, after I was diagnosed, the doctor told me my myelin sheath was gone and that it doesn’t grow back. He explained that I would most likely be blind for the rest of my life, and if I do get any of my sight back, it will probably be minimal, if any at all. I responded with “Oh yeah, then why is there a gray elephant on your wall?”
That was the first time I started to see. After that, I went back home and began chemotherapy. Normally, chemo is associated with cancer; the chemo that I do is genetically modified to combat NMO. Though I do not lose my hair, I do lose half of my immune system, which causes me to get sick quite often.
Six months after I was diagnosed, I went in for a check up and MRI. At this point I could walk and see as if nothing had ever happened. The chemo doesn’t necessarily heal for a disease like this. Scientifically speaking, I am supposed to either be dead or blind in a wheelchair. They called me a few days later, and informed me that they lost my scans. They said the scans they had for me don’t match the scans of a normal NMO patient. I came to the office to check out the issue. They sat me down and said, “Your scans look completely normal. It looks like you have never been sick.” Apparently, my myelin sheath had grown back (which never happens) and my spine had completely healed without scars. The nurses told me that there is no medical explanation for how this happened. She said I must have believed in a higher power, because that’s the only possible explanation. Medically trained doctors and technicians all said the same thing. A couple of days after the scan, I met with my neurologist; on December 18th, 2012, I was put in remission. Baruch Hashem, I have stayed in remission, with only some minor hiccups here and there, for five years. Not only that, but I am going to be the second NMO patient in New York who has the most extreme and rare form of NMO to be weaned off the chemo.
Though I am in remission, some days are harder than others. Throughout each round of chemo and the other minor hiccups that NMO brings, the friends I’ve made at Stern have been so helpful and amazing through the process. The biggest lesson I’ve learned from all of this is that people plan, and G-d doesn’t necessarily laugh, but He says, “I have a different plan.” At times, we may not see the good, especially in situations where our own body fails us. Even in the darkest of times, our eyes can be opened, allowing for the smallest specks of light to enter. The Ba’al HaTanya, Rabbi Shneur Zalman of Liadi, the first Rebbe of Chabad-Lubavitch, said, “A little bit of light dispels a lot of darkness.” Being blind opened my eyes entirely: had I not been sick, I would never have had the most wonderful experiences at Stern. Educationally, I have spent four years learning the ins and outs of Torah; socially, I have formed the most incredible friendships, so many of which I am so blessed to even call “family.” Was I blind from NMO? Yes. Did NMO bring light into the darkness? More than anyone could understand.