Mad Love: My NF Girlfriend

Blog Post By

Joseph Meier

I remember the first time I saw Angela Velasquez.  In a sea of vapid hollow normality, she stood like a lighthouse shining in the darkness.  I was in the lunchroom at King High School, and she was standing, tray in hand, looking for a place to sit.  She had the stupidest look on her face, typical of a freshmen during the first week of school.  Despite the fact that our cliques brushed shoulders, I would not see her again for ten years. 

 My first week of school at the University of South Florida as a transfer student, I was kicked out of one of my class because the alarm on my phone went off.  Professor P and I had a standoff which made quite a scene in my sociology class.  Angela was sitting there in the front row and watched me walk out.  She later told me that she did not think that she would ever see me again, but I am a tenacious person.  I was not going to let one teacher detour my goals in life.  Professor P and I are friends today.

 One day our class was canceled, and neither Angela nor I checked our email.  I saw her face to face and recognized her from the lunchroom all those years ago.  Then I asked the words that would begin a relationship that has changed my life: “What high school did you go to?” 

 It has been a seemingly short two years since I asked that question, and I cannot understand why people look at me and wonder why I am involved in a long-term relationship with the person I affectionately call Baby Bird.  How can these people look at her face and not see what I see? 

Symmetry is so very boring; there is nothing interesting about it.  I find the “different” far more alluring.  What people call ugly, I find fascinating and beautiful.  The first time I saw a dying tree, I fixated on its wondrous form.  Perhaps no one will believe me, but I was first attracted to Baby Bird because she is attractive, yes even her face.  I did not see her inner beauty initially, nor am I free of shallow tendencies.  I was attracted to her. 

 Over the past two years, I have discovered her vibrant personality, her soul-pounding inner strengths, and her emotional frailties.  She gets more beautiful every day.

               

                 

Thank You NF

I am who I am, because of this crazy disorder that has no cure. I share my story on my blog because I want others affected by Neurofibromatosis and their loved ones to know that despite all the pain, surgeries, treatments and fibromas TRUE HAPPINESS is possible.

As I have shared in various posts, it has taken me countless tears and years to realize that happiness is up to me. If I am not happy, I cannot blame NF. Why will I allow NF to be the maestro of my life?

So, thank you Neurofibromatosis for making me one strong cookie!
When I started my blog over three years ago, I never fathomed that it would reach so many lives or open so many doors.

On October 03, 2015, I spoke at the first Neurofibromatosis Education Symposium at All Children's Hospital in St.Petersburg, Florida. I felt honored to have been given the opportunity to share my story.  I was overjoyed to meet and speak to some of my readers.

Thank you, NF for all that you have given me. Despite all the pain and hurt I have now and will continue to go through, I would not be the person I am today if it were not for this crazy disorder with no cure... for now.

Fibromas and Showing Skin

 As I get older, I, sadly, have become more self-conscious with my fibromas. I look at my body and dwell on the fact that there was a time when I did not have single fibroma.  Sometimes I blankly stare in the mirror and wonder if I will get more. As of now, I do not have many, and the ones I do have are small. I work myself up over something that is completely out of my control.

Thankfully, I have an amazing boyfriend that snaps me back into reality. He tells me I am perfect just the way I am, and that he will always love me with the fibromas I have and will continue to get. Even though I honestly believe him, it is sometimes not easy.

I make it hard on myself because  I am self-conscious about my figure. I do not have a womanly figure. I am petite and short. My small breasts make it hard to buy adult clothing. At the age of 28, I still purchase clothes in the junior department. People still think I am in my late teens at times. I like that I look young but sometimes having a small frame, and NF causes my self-esteem to not be so high.  I know I can get a breast augmentation, but after 17 surgeries I am not about to have one just to be able to fill a dress more.

A few days ago I read a beautiful story about a young lady. Due to an illness, she has an ileotomy, a G-tub and a J-tub. To accompany the story, there is a beautiful picture of this most courageous young lady. This story on The Mighty put everything into perspective for me because I realized that I can let my fibromas keep me hidden or show them off to the world. After all, I and I alone, am the only one that is keeping me from being confident.

Number 18

The last time I had surgery I was 18 years old and a senior in high school. Now I am 28 years old, out of college and working as an Intervention Specialist. I am planing on having surgery number 18 soon. I do not remember being so anxious or nervous before, but that is exactly how I am feeling now. I think it is because in the past, all I had to know and care about was the day of the surgery. Everything else was left to my parents.

For the most part, I never thought to ask them about my insurance or out of pocket expenses. One time,however, I asked my parents if they ever had to cut corners to pay for my surgeries, and they said no because the insurance took care of everything.

Now that I am a big girl, I have to take care of all the costs and deal with the insurance company on my own. It has not been an easy process at all. I find myself adding up costs and calling my insurance provider, doctor and hospital trying to get three simple answers to three simple questions: how much will my surgery cost, how much will my insurance cover and how much will I have to pay?

To be honest, I am not liking the numbers that have been given to me to date. I am having a difficult time wrapping my head around the situation. I cannot believe that this surgery will cost so much.When compared to my other surgeries this surgery is not as delicate or relevant to my health, yet it is still so expensive.

I am currently talking to my cousin in Bogota, Colombia, a surgeon, to give me an estimate of how much it will cost to have an out-of-country procedure. If airfare and the cost of surgery is less in Colombia than what it is here, I will go to Colombia.The exchange rate is already in my favor (for now).

As things stand today, I wish I were 18 again because that way I would not have to deal with any of this nonsense! But alas, I need this surgery, however minor it is. I still freaking need it.

NF... Need No Rescuing.

Rummaging through paperwork I found an old poem. It was folded in four. I had no idea of what I was about to read; I read it once, twice, three times and I allowed my own words to sink in. I wrote this poem back in 2008. What I did not know then that I know now was that I was truly depressed. My dad had moved out of the house and to Miami with his mistress, my mom filed for divorce. My childhood home was going through foreclosure. I did not know who I was or who I wanted to become. I was lost.

I remember writing the poem and reading it after printing it. I also remember reading the words but to me it was just black words on a white sheet of paper. Finally, I remember reading this very poem at a local cafe on an open-mic night and the audience looking at me in awe.  Again, the words I wrote did not hit me until I read it today. 

 I am looking for my soul

The soul that I seem to have lost  

I seek through through memories of the past to see if i find it

I draw a blank canvas-nothing

I wander off into the pool of emotions that I have dived into before

But  all I hear are echoes

My soul has fled- and I don't know why

There is not hope

I can't find it

I am just a shadow walking in the wind

Hoping, to one day find what I have lost-

My soul

It took me a few years to realize that my soul was never missing, I wast just not living. Life is not easy not because I have NF but simply because life is not meant to be easy.I have gone through a lot in my 28 year of life, some of my life experiences have been due to my NF. While others, are just things that I have lived through. I am a stronger and better person. I am not the girl in 2008 anymore and I NEVER  want to be that girl AGAIN.

Hope you enjoy this song by Yuna. I found it very fitting for this post. Every time  I listen to this song I remember how far I have come and how many more miles I have left to walk.
Enjoy! =)

Another NF Birthday... and counting

Yay!! I am 28 years old!! Whoop-whoop!!

For my 18th birthday, I had a party at my house and invited all my friends. Even though I threw a party for my birthday every year, I remember being extremely excited. I also remember being extremely disappointed and crying... a lot.

All I wanted for my 18th birthday was to be kissed. I felt like a total outcast because I was the only one in my group of girlfriends that had not been kissed, and I did not like it. So, I made up my mind that I would get kissed that particular night by one special party guest.

I created this scenario in which he would take me aside. Pull me onto him with one hand and gently plant a kiss on me. Of course, he did not know that he would be the one giving me my first kiss, but that did not matter to me because somehow I  knew that somehow he would know.

He never made it to my party. So I began my 18th birthday thinking that I would live the rest of my life kiss-less. Yes, I know, it is just a wee bit dramatic. I did get kissed eventually... at the age of 23, but I am far from the person I used to be.  I used to dislike not being part of the inner circle, now I relish the fact.

You see, I have come to learn that things happen when they need to not a moment earlier or a moment later. The way I see it now,  if he would have kissed me, my life today would be completely different. To tell you the truth, I really like the way my life is right now.

For my 28th birthday, I got kissed... many times over by my boyfriend. The best part of this story is that I do not have to wait until next year to get kissed. All I have to do right now is look to my left,  and kiss Joe, my Lucky Charm.

Mi Mama Me Mima

 My mom is great. I know, every child believes their mother is great, but not every child has a mother like mine. My mom also has Neurofibromatosis, she was diagnosed when she was a teenager. Unlike me, she has not had to have multiple surgeries on account of her NF. However, she does have a lot more fibromas than I; but she also did have three kids by the time she was my age.

I asked my mom once if she would have had children if she knew that her NF would have been affected. Her response was simple. She said, "Yes."  I've also asked my mom if she would have still had me if she would have known that my NF would be more complicated. Again, her response was was simple. Once more she said, "Yes."

My mom has been by my side during all my surgeries. She is always the first person I ask for after waking up from an eight-hour surgery. She has slept on uncomfortable hospital beds and ate yucky hospital food all to be by my side. She has nursed me back to health when I have been sick. She has even removed stitches from my index finger.

My mom is great. She has done a fantastic job raising my brothers and me. She has taught me to never allow myself to believe that I am incapable of accomplishing my goals due to having NF. My mom is a beautiful, smart and talented woman that I one day hope to become. She is by far one of the strongest women I have had the privilege of knowing. After overcoming a divorce and financial difficulties, she is now graduating with her Master's degree in Counseling! I am proud to call her my mother!

Te amo Mima !