Neil Taylor: Brain cancer

IMG_0380I had to rewrite my life. I almost didn’t get the chance to.

I was 28 years old, teaching math and gym at a school for learning disabled boys—ones with ADHD, ADD, mild autism or Asperger’s. I also lived with them as a dorm dad, acting like a surrogate father. I loved my job. It was a really cool experience to work with those kids.

But something strange was going on with me. I had some unusual numbness in my face. I’d get tunnel vision in my left eye that would come and go pretty quickly. I also had an experience trying to communicate a sentence in my head, but I just couldn’t verbalize it. With the way I was at the time, I just swept all of it under the carpet, figured I’d get some more sleep and would be fine tomorrow. I was 28. Who thinks anything’s wrong with them at that age?

I told my girlfriend, who was a nurse, about the symptoms. She insisted I get them checked out and I reluctantly scheduled an MRI. I got it, thought nothing would come of it, and went on teaching the next day.

When I got back to my room later that day, my cell phone was filled up with numbers I didn’t recognize, including several from the hospital. I called the doctor back and I will never forget what he told me: “Neil, normally I would not do this over the phone—I would tell you in my office—but time is of the essence and you are suffering from a life-threatening brain tumor.”

Right after the phone call with him, I went to the hospital some distance away with my girlfriend and was immediately seen by a team of doctors. They pulled up the MRI and showed I had a tumor the size of an orange next to my brain tissue. It totally displaced the left hemisphere of my brain to the right hemisphere. The doctors couldn’t believe that I could even walk or talk.

I was supposed to have surgery where I was kept awake the whole time, but ended up having to be put out because of some massive seizures I experienced the night before. Their goal was to take as much of the tumor out as possible—about 70%. When I woke up from surgery, I opened my eyes and couldn’t see anything. I tried to rub them, but my hands were tied to the bed.

IMG_0378I had major complications from the surgery: I was paralyzed on the left size of my body, couldn’t swallow, couldn’t breathe on my own and I developed blood clots in my legs. I ended up spending five weeks in intensive care, which is unheard of.

I also lost my sight, which is why my hands were tied down. The optic nerve was under such intense pressure from the tumor; when they removed the tumor, the lack pressure caused my optic nerve to fail. The lack of bloodflow caused the connection between my eyes and brain to stop.

Once I left the hospital, my whole world changed. I never went back to the school where I taught. Instead, I moved back home in my parents’ house, which is hard in your late 20s when you’re used to being on your own. I couldn’t do anything. I went from 20/20 vision to being totally blind—it’s hard to explain, you just lose everything.

Before I was blind, I was an athlete—I played lacrosse, was a big downhill skier, surfed, mountain biked, and was a downhill skateboarder. Everything I loved to do was gone. I can’t play lacrosse with my dad. I can’t go to the museum with my sister. I can’t play darts. I can’t throw the football around with my nephews.

A lot of my male friends abandoned me, too. We used to do physical things together and obviously that changed. I couldn’t exactly call them up and have them come over for a conversation. It clips your wings. I still feel that to this day.

On the other hand, my female friends stuck with me through everything. Blindness changed me in a way where I’m more sensitive now. I’ve lost the machismo that I used to have. I’m much more open and talkative and better able to connect with people than I was before.

IMG_0379My girlfriend and I slowly drifted apart. We had been together for about three years, were very close and talked about getting married. Back then, I was strong, I could see, I was capable, I could drive, I could do everything. I was a provider. And then suddenly I’m blind. I couldn’t walk or talk. I needed a walker. She stayed with me for about a year after the surgery, but we started seeing less and less of each other as she got busy working on other things. There was never a final “I can’t do this” kind of moment, just gradually we stopped being together.

I had to find a way to reinvent my life. There was one transformative experience I had right before my surgery. My aunt ordered a massage for me—I had never had one before. I was expecting some gorgeous Brazilian massage therapist to walk in my room, but instead I got this short, fat, hairy guy.

The experience transcended everything I ever thought about massage. I really connected with the man, told him how scared I was, and he made me feel at ease for the moment. I never forgot how that felt. Once I accepted that I was going to be blind for the rest of my life, I decided to go into massage therapy.

I love it as much or more than being a teacher. It’s just as physical as the sports I enjoyed before, but it’s also not that visual either. You feel your way around the body; you really don’t need your eyes. I’m really proud of myself for being able to do it.

I work seven days a week in my massage studio, which is in my house right when you walk in. My house was a total piece of shit, foreclosed for four years. We bought it, fixed it up and now it’s totally awesome.

I’ll never be at peace with being blind. After being able to see for 28 years, then losing it…the rest of my life will be a transition. You wouldn’t imagine how much you lose when you lose your sight. But while I’m blind, I’m not done living.

I never gave up. I’ve had to accept the world for what it is. I’m still here and I’m still happy. I have a new girlfriend now. She’s the best girl I’ve been with—blind or sighted. Each day is a gift to me—every day I wake up and that’s something that most people don’t appreciate. It’s a miracle that we’re all here. It took me a little while to get to this place—to be blind, but just joyful to be alive—but that’s the way I feel.

Neil is a nine year survivor.

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