Monday, February 5, 2018

Taylor's Story

Thanks everyone for tuning into my first post of 2018. This year I decided I really want to focus on community and personal stories from people living with Neurofibromatosis. The first story I want to share with you all is of Taylor! Please leave encouraging comments, and support a fellow NF'er! 

        My Name Taylor, I am 20 years old and I was diagnosed with NF when I was born. NF runs on my moms side of the family, my grandmother, brother, uncle as well as my mom have NF.  For me I would never change having NF I think it has made me a stronger person. I have had countless surgeries on my right eye. It is has been de-bulked, laser surgery, and then put in a frontal  sling. I remember being a kid and I would always had a hard time getting along with people because I was different and I  didn’t look like every one. I was bullied a throughout school. I would have nights where I would just cry my self to sleep because  I would just be so tired of feeling different. But every year it got a little bit easier, since everyone I went to school with started to accept the fact that we are all different and it was okay to be.

         I think the worst year for me when was in elementary was when I was in grade 4, the reason why is that I think that was there year where everyone started to find them selves  and who they were. For me I had no idea who I was and I still was getting comfortable on being different. From what I recall my eye was still not looking the greatest and it was still sitting pretty low. This was the year that I was bullied the most by a handful of people in my class. What ever I did it wouldn’t get better or it wouldn’t get worst. I just kinda let it run it course and it eventually stopped. I don’t know if it was because if they got bored or if it was because I stopped caring

        When I go into jr high i had the chance to go to Camp K, in Salt Lake City, Utah. Going it allowed me to meet people who had the same struggles as me and just for one week out out of the summer, I was able to just be my self and where I didn’t need to worry about what people thought of me. I went for 2 summers and they were probably the best times I could ever ask for. Even though I am not close with the people who I went to camp with, I still consider some of the greatest people I will ever meet. I find that with having NF and you meet people who have NF as well your connection and bond happens so fast because you already have something in common and you are able to talk to people and here their experiences with it.

           I think Jr high was also the worst years of my life. In grade 7 I had all of my friends from elementary and we all were super close but then towards the end of the year, I don’t want happened something just changed and this one girl just started to treat me like absolute crap and started to tell me that I don’t belong with them and I couldn’t be friends with them. It was like she was the ring leader and everyone followed her and they just started to tell me, how such a horrible person I was. That went on for months, but the time the year was over I had  two people come to me and say that they shouldn’t have listened to her and one of them became my best friends and to this day she still is.

          I remember when I was in grade 8 I got to the point where I was tired of people always asking me questions, so I decided to make a presentation on NF to explain it to everyone, so I would just need to say it once. But once when I was done and I needed to present it to my class I forgot how much I hate public speaking and to this day I still do.  After me speaking in front of my class I didn’t look different to them anymore, they looked at me almost like I was normal to them. For the rest Jr it was pretty easy because we never had anyone knew what I had and they didn’t care.

        As high school was approaching I don’t remember if i was excited or nervous..  I think it was a bit of both. I was excited for the fact that I was able to be more independent, as I was able to drive and no longer to take the bus. But I was also scared just because I know how people can be, and how terrible they can get. But all and all it was pretty good.

         In grade 10 is when I had surgery, this surgery is where they put the frontal sling it. The sling sits right above my eyebrow and it allows it be lifted so my vision is not going to be effected. But since Calgary is so dry, my vision has always been an issue. But for it being my first year in high school I  didn’t want to miss anything, because my fear was falling behind and failing my class . so I went back to school way sooner then I should have. The rest of high school was pretty easy. We still had issues with my eye being dry so we started to try to find ways to keep my eye not as dry. We tried restias which is a drop that I still use but I’m terrible for using because I don’t bring them with me where I go and I  just forget to put them in general. Other thing that we use and I find that it helps the most is plugs, it just gets placed and you tear duct and it helps retain the moisture in my eye.

        Now being  out of high school and working full time. People only ask when it is super noticeable. About a year ago I was hanging out with friends, there was a moment of silence and my one friends looks at me. and he asked me what was wrong with my eye but when he asked me, he said he never wanted to ask but the wanted too , since we became so close and he just wanted to know.

        I’m going to be forever thankful for having NF I am able to teach someone almost every other day about NF. I have my days where my eye won’t bother me at all and it looks completely normal.  But then I have my days where it is super dry and it just looks painful. In the end my eye is my biggest with having NF. And we still are trying to figure something out that is going to help my eye and not to make it look so dry and painful. 






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