Unlike the first wound that led to an almost ten-hour operation, tracheostomy, 31 staples on my left thigh, over 40 stitches on my head, and a week-long stint in Moffitt. The two minor wounds on my temple were caused by gravity, and my skin not being as elastic due to previous surgeries. Early in the recovery process, my surgeon added additional stitches in the incision site that had begun to open, unfortunately. It did not work. My medical team and I hope the two small openings will close by granulation because I want to avoid going under the knife in 2023.
So here I am typing away on 2022, and I find it challenging to narrow down the most significant moments of the year because it was not all about recovering from my 23rd surgery. What follows are what I consider the most noteworthy moments of 2023.
In July, I flew to Chicago, Illinois, and attended the first annual NF Summitt. Attending the summit was an incredible experience because I was forced out of my comfort zone. Even though I knew I would be surrounded by my NF community, I felt uneasy because I was in the midst of recovery and not happy with my face. However, my fears and anxiety evaporated when I met two NF moms at the airport; the three of us carpooled to the hotel. Meeting these two moms made me feel at home; this feeling of love and warmth carried on until Sunday, when I said goodbye to all the friends I had made. While at the summit, I was invited to participate in an interview for a medical program, Tu Salud Tu Familia ( Your Health Your Family), and although the interview has not aired yet, I am excited to see the lasting effects it holds not only for the NF community but primarily for me, as an advocate. The interview for Telemundo was not the only interview I participated in; I also participated in a brief Q&A in the media room for the Children's Tumor Foundation. My Q&A was utilized for the Children's Tumor Foundation's 2022 fundraiser Believe campaign in November and December.
because I am exposing myself to rejection, but how can I expect to meet my Mr.Right if I do not put myself out there first? My afternoon date with the Airman helped redefine my nonnegotiables for dating as I realized how much of a catch I truly am because I need a partner that fully embraces my NF journey. I do not need someone that gives me the copout, "difference in lifestyles."
In October, I was contacted by a production company to take part in a reality-like TV show. The show's premise is to feature individuals with facial differences and have a medical team improve their lives through surgery. I declined the opportunity to be on a national TV network because I felt like I would be on a modern-day freak show; I say this with the utmost respect for those individuals that decide to participate in this program and others like it, but being part of a medical program that focuses on "fixing" a physical feature is not something I want to be part of. I have struggled for more than half my life in accepting and loving my body and self that I do not wish to undergo surgery if I do not need it. I also felt as though I would not have control of the narrative and felt uncomfortable allowing someone else to write my NF story for ratings.
2022 has been a year that has forced me out of my comfort zone because of my 23rd surgery and the various opportunities I had to share my NF story. In 2023, I look forward to continuing my recovery and my wounds fully closing. For this upcoming year, I want to continue sharing my story through interviews and public speaking because NF visibility is important.
