Welcome to my other blog. I started this one shortly after graduating from the C.I.A, to differentiate between my food and my other thoughts. It's a cozy little place with frequent weird but real, honest thoughts.

There's really not much more to say here, as anything mildly interesting is either down below or written in my Armadillo section above.
Hope you can relate to some of my thoughts and situations, even if they tend to be strange sometimes

Monday, May 17, 2010

My NF Paper

Back at school, I was just in the begining stages of my blog writing and Facebooking. With Facebook, I discovered something that has become so important to me: Neurofibromotosis. It opened up so many support groups. People just like me. Talking about NF, embracing it, becoming advocates. Something I never had done.
My lovely Food Writing teacher, Irena Chalmers (something of a Rock star to me when it comes to writing), encouraged me to take up an Independant Study, talking about my NF. After some thinking, I decided to dive in and do it.

It makes me laugh a little now, to think of the Dean of (Dean of what? I can't remember) possibly Bachelor Studies, meeting with me to discuss the project, trying to twist my arm to make it into a Learning Strategies  Center Propaganda project. Really? Really? Can you even spell Neurofibromotisis, let alone say it, Dean?

Part One
Part Two
Part Three
Part Four
Part Five
Part Six
Part Seven
Part Eight

Anyway, here you will find my paper. I hope you read, enjoy, and learn more about me, and NF.

Part 8

Although my externship was miserable, I can't honestly say I would take it back. Out of my entire externship experience, I can see one positive thing to come out of it. I met CIA Professor Irena Chalmers, and she was opened me up to writing. I had always loved to write, finding it the most effective way to express what I had to say, but I don't think I had considered it as a serious career opportunity. Learning about food writing and other parts of a food magazine gave me something to work towards. Discovering something I felt I could attain with hard work gave me something to look forward to when I returned to school.  If it weren't for Professor Chalmers I wouldn't be anywhere near where I am today, or be pursuing food writing as much as I am, or even writing this independent study. I can't honestly say I would take back my externship because so much good has come out of it.

    Upon returning to school I completed my Associate's degree and went onto the Bachelor's degree program. I used the Learning Strategies Center when necessary for extra time on tests, but didn't require anything more than that from the center. Some are surprised by this, but don't seem to understand there is only so much they could do for me that I actually needed. I've always been stubborn about  my “disability” and never wanted attention for it. It was good to know there was help when I need it, however, I didn't require sessions to discuss where I am in my education.
    I have NF1, but it doesn't mean I need to be treated like someone  incapable of handling her life and being dependent on so many people all the time. The purpose of this paper is to show my perspective on how others tend to treat  people with “disabilities”. In my case, people don't understand or can relate, so they don't know how to react and treat me. More often than not, I'm misunderstood or underestimated. It's bad enough to be stereotyped for something few people have ever heard about, let alone be judged for needing extra help. I'm perpetually insulted  when people are surprised when they see what people with disabilities can accomplish, and there's such a need to prove ourselves the way we do. I dislike being seen and labeled as someone with disabilities, I've accepted the fact that I need a little help and understanding sometimes, but to be seen only for what I have is infuriating as well as offensive.

    Disclosing information about what I have has always been a challenge for me. I never knew what to disclose, or how much. NF1 is a relatively unknown disorder, even though the birthrate for it is very high. I wasn't comfortable explaining it to other people, because when I did they acted like it was this enormous struggle and that so many things were accomplishments in life. The paperwork for my learning disabilities and the help I required were submitted to the relevant places,  so up to college I had an assumption that all teachers had access to it, and therefore I had no need or desire to explain it to them.
    Growing up, I wanted to be treated like everyone else But it's hard to find a balance. A part of me wants to be treated normally, while the other wants my differences and my different qualities to be seen and understood. I like being a little different and going to a different drum, but sometimes I wish it weren't so difficult. When it comes right down to it, I always want to be known as who I am, and not as a disability on paperwork.

Part 7

If I hadn't been so afraid of losing points on my externship, or even worse starting from square one, I should have called the externship office at school to speak with them. I would urge students who suffer any sort of ill treatment at an externship site to seek help from the school, even though starting over may not be an option, speaking to them would be very helpful. At the time, I didn't know if they could help me, and was so frustrated with myself that I was struggling so badly with the most simple tasks, worried they would say the same things as my boss and not understand either.

    It turned out that the back of the bakery was an improvement, even if it was a small one. My hours were much earlier- midnight or 2 am, depending on the day. But I didn't mind, the back of the bakery were far nicer to me and treated me like a worker, as well as a student. They teased me in a way that made me feel like I was one of them, and were usually patient when teaching me what to do. I made thousands of dozens of bagels and donuts, bread dough, rolled croissants, made doughs and batters. That isn't to say I didn't have my bad days, but they weren't as unbearable as before.

    My hand limitations weren't as noticeable in the back of the bakery, as I worked mostly with doughs and batters, the only piping I had to do was filling cookies with jam or chocolate. I hated to venture any further than the back of the bakery and avoided Eric. I was terrified to run into him. Even though things were better, I was still exhausted. I would spend the majority of my time in my apartment reading, writing my externship manual or hoping to find  friends to talk to on-line.  My hours made it difficult to sleep more than a few hours. I would wake up in my early morning hours and have to find something to look forward to later on in the day to get myself out of bed, though the idea of not showing up to work was terrifying enough to get me moving in the morning.

    I was frustrated at my inability to tell my extern bosses what was really making me unable to ice cakes or pipe. I desperately tried to prove myself by staying after I clocked out several hours a week practicing my piping, hoping they'd see my attempts to learn.  When Norm, Eric's brother, made brutal comments on my piping I  tried again to explain my hand muscles, and again, it was dismissed. They didn't want to hear excuses, and I knew that, so I took their insults, anything to get them away from me.

Part Eight

Part Six (Oh, Man, this is never gonna end)

Extern wasn't the best period of time in my life. The first day was short, exhausting but somewhat promising. I received a walk through of the day, glazed some donuts and was shown how to ice an enormous seven layer cake, but after trying it myself I was arrogantly told with a satisfied smirk that I had done it wrong.  However, as the weeks passed by and I struggled more and more with cake icing as well as cutting things. I would be teased for not being able to ice over 700 black and white cookies in under an hour, even though it had been my first time doing such a thing. One difficult day I was unable to cut fresh from the deep freezer brownies perfectly, I was yelled at  for 10 minutes before I was able to make a meek attempt to explain to him  why I had such difficulties doing such things. When he sneered at my explanation for my poor hand muscles (the only way I was able to explain it) I gave up, starting to doubt even my own reasons. I fought tears at work almost everyday, not knowing how to get myself out of the situation, or explain to them why I struggled so much, knowing they would neither believe me, nor care.
    Daily two of the brothers seemed to take turns to try and push me further and further, saying they were trying to make me develop a “thicker skin” and not “take crap from them anymore”. Whether it was calling me a “librarian”, cursing me as a baker, or other harassing remarks. If that wasn't bad enough, most of the other male workers were equally unkind and just as sexist, if not more sexist and harassing.  I tried to get through work everyday doing the  menial tasks assigned to me such as taking inventory in the walk in freezer, organizing sugar decorations or refilling sprinkle containers. The only hands on thing I would  be doing was glazing and filling donuts, filling orders or stocking the bakery before they opened.  Finally, halfway though my externship, Eric one of the brothers and the one who gave me the hardest time, pulled me aside and informed me he was changing my hours. I would now be working in the the back of the bakery where I would no longer be working under him, but with those who ran it, making and baking off products. He also suggested I rethink my career path before my parents invested anymore money in the school and my education. There was nothing I would muster up to defend myself. I accepted it and felt angry at myself and defeated.

Part Seven

Part Four! Still hanging in there!?

One particular event in my high school career to illustrates this point was my guidance counselor and her lack of guiding or counseling. Senior students were required to meet with the counselor with their parents to discuss their college choices. I had wanted to go to the Culinary Institute of America since I found out about  it in the 5th grade, and was determined to get here ever since. I immediately told her my college choice, the period of time I had wanted to attend the school, as well as my desire to apply only here and perhaps one other school (though I didn't want to ever consider a second choice). She didn't take to this very well. She hadn't even heard of the school or  understand what it was, how well known it was and only degraded it further to me by referring to it as “That little cooking school in New York.” She quickly dismissed it as a place I could never hope to attend and suggested the state or community college that would be more “on my level” and a place I would be “more able to handle”. I was shocked and furious.  I always knew I had struggles and hurdles with everything in my life, but I had fought bitterly against being treated and labeled as someone with “disabilities”. I didn't know how to react to the situation in a calm and professional manner. Not being intimidated, and not wanting to show she was making me so angry, I more strongly stated that I've been wanting to come here since I was a child, I tried to explain my passion for baking and my interest in the school, all while trying to keep my voice from shaking with anger or telling her how I really felt about what she had said. I also firmly told her that I would apply for this school only, and if I didn't get in, only then would I apply elsewhere. Her attitude and tone became condensing, and hinted I should have other options. I, however knew what I was capable of, and didn't let her talk me out of it.

    This particular situation is worth mentioning because  my entire life people have treated me like my principal and  counselor had. My parents were told by doctors I probably wouldn't progress past the mental and education age of that of a six year old. Some teachers and doctors regarded me as someone who wasn't really capable of much because of my disabilities. Years later my extern bosses would implore me to drop out of school and pursue a different career. I never had a voice up to that point with my counselor, and when she told me I couldn't do something just because I had some difficulties that she would never understand, I wasn't going to let her intimidate me into settling for something less than what I knew I was capable of.

Part Five

Part Five

My experience attending the Culinary Institute was quite different than high school. Other than having to retake math in B-block, I was doing fairly well in my classes and while I knew I had support with classes if I needed it, I didn't use it very often. Being in bakeshop classes the majority of the time in working towards my Associates degree, I didn't have a strong need for help until I reached the bachelor's program, even then I just needed it for extra time on tests.

    I knew I struggled in some of my baking classes with fine hand skills such as piping, cutting and icing, but thought it was just because I didn't have enough practice. It wasn't until I reached my 2nd term practical and realized exactly how much my NF impacted my ability to do certain tasks. I had trouble piping éclairs, icing a cake, slicing apples and cutting apple strips. It wasn't that I lacked the passion or knowledge, but the way my hands were able to work and maneuver. I didn't quite have the ability to finely grasp the tools and manipulate them properly. This cut deeply into my confidence and my belief that I truly had the ability and passion to be here. What kind of baker can't ice their own cake correctly?

    These problems severely impacted my confidence to find a good externship. I was nervous about going  into the real world and tackle cakes. The situation would no longer be a classroom setting, where it's okay to not be perfect, but real cakes and real customers. What would my boss think? I finally found an externship site near Hyde Park in Kingston, in a bakery where based on reviews from other students, would possibly be a place to grow and learn. I quickly realized, as early as my first day, how wrong that would be for me. The bakery turned out to be owned by a small family with three brothers, all CIA trained, in the bakery business since they were children and were  burnt out, bitter and miserable, seeking to make everyone else not like them as miserable as them.

Part Six

Part Three of my NF Paper

Not being able to communicate as effectively as everyone else has made a huge impact on my life. Having NF1 as well as A.D.D makes you think and act very differently than most people of any age. You don't know how to handle social situations like “normal” children. Making and keeping friends has been difficult my entire life. As a child, there were times when I was bossy, impatient, moody, aggressive at times and very eager to be a part of everything. But at the same time I was friendly, always eager to share with others, well-behaved,  nice and did my best to be helpful, perhaps to counteract the times I seemed to misbehave. Looking back. it's not hard to imagine that it was difficult. It made socializing and relating to people very difficult  growing up.
    I managed to get through high school with very few problems. I attended a small all girl's school, where they had very little knowledge about how to handle someone with disabilities, let alone NF, I managed to get through my education without much (if any) of their “help”. I was exempt from a language until I felt too embarrassed to explain my need for the exemption and took French my last two years of school.
    High school surprised me with administration's lack of knowledge of learning disabilities, but the teachers had some degree of knowledge of them. In grade school  most children with various disabilities were in mainstream classrooms, there were social workers and most of the school administration and teachers had at least some knowledge of students with special needs. So from my perspective as a child, I never thought having disabilities was a big issue, just an annoyance. In high school,  I always felt as though the principal and guidance counselor treated me like I wasn't able to do anything. I knew they didn't understand and probably didn't really want to. It angered me when I would hear their tone and their words, as if they looked down on me.

Part Four

Part Two of my NF Paper

My NF1 has caused very few physical complications in my life so far. I have the café au lait spots, my spine is slightly curved and I also have Lisch nodules. I have very few of the symptoms I listed above, and when I do have them they are usually mild and infrequent. What has affected me most in my life has been learning disabilities, A.D.D, fine tune motor skills, communicating, socializing and other  issues. I have been on several forms of Ritalin and Concerta throughout my life to help with some of these issues. There is no cure or treatment for NF1, only checking up on it every so often, mostly with yearly head and spine MRIs as well as checking up with neurological doctors on a yearly basis or more frequently if necessary. In most cases of NF, how many and how severe the symptoms and complications you have growing up is usually an indicator of how your NF will be in the future.

    School hasn't always been easy for me. After spending one year in a special education class, before entering a normal grade school, I frequently felt frustrated by things I couldn't do that others could. I struggled and still struggle with  any form of math, my handwriting as well as other hand oriented skills, and grasping simple concepts. I was often outspoken, impatient and very energetic.  I had trouble communicating, and despite several years of speech therapy, I still find myself speaking too quickly, though the therapy was also for other impairments. I was and still am very stubborn.  In retrospect I believe  that as a child I thought it was everyone else's problem  they couldn't understand me. I couldn't comprehend why it was so difficult for people to understand me. It is still something that frustrates and flusters me..  Though I try, I still work to be understood and slow down when I speak.

Part Three

Part One of my NF Paper

Living to a Different Drum
Jenni Robinson
March 2008

    I never wanted to let my “disabilities” be the cause of an excuse to not be able to do something. But as I've become older, I've realized that there are times when it is necessary to speak up and let it be known why I can't do certain things, and that talking about it isn't a crutch, or an excuse, just a way to be better understood.
    I was diagnosed with  Neurofibromatosis Type One when I was about two years old.  There are two main types of Neurofibromatosis:  Type I and  Type II, but I'll refer to them as NF1 and NF2.
    NF 1 occurs in 1:3,000 births and is characterized by having two or more of the following symptoms: six or more “café au lait” spots on the body, small pea-sized bumps called neurofibromas on the skin but also larger areas on the skin called 'plexiform neurofibromas'. There may also be some freckling under the arms and/or  in the groin area, begin tumors on the brain and spine, Lisch nodules- which are pigmented bumps on the eye's iris, some bone differences such as bowed legs,  and small tumors on the optic nerve that may or may not affect vision. Café au lait spots, Lisch nodules and spinal and brain tumors  are the most common signs of NF1. 50% of those with Nf1 have various forms and degrees of learning disabilities.
Symptoms of NF1 are wide ranging; not everyone will experience all symptoms in the same way or to the same degree. The most common symptoms of NF1 are: possible vision impairment/ blindness, speech impairments, café au lait spots or tumors occurring anywhere on the body, scoliosis, digestive issues, seizures, headaches, brain tumors, brain blood vessel defects, learning disabilities, mental retardation, itching, over sized head, high blood pressure, muscle problems (such as fine tune motor skills), freckling, early or delayed puberty, false joints, bone deformities, and increased risk for different types of cancers, although this usually isn't due to tumors, as those tumors are very rarely cancerous.

Part Two

Friday, May 14, 2010

Doctor Rant

So many of my NF friends have been suffering from various problems lately And by"Lately" I mean 'Every day". We all do. Chronic pain, itching, tumors, vision problems, all of it. So what do we do when we go to the doctor, thinking "Hey, he's a doctor, of course he'll help me!" Only to be told that your "pain problem" doesn't exist for them and they refuse to do surgery. HELLO!!! Anyone out there? Anyone listening!?

Apprently, the NFers are the only ones listening, and we are not happy.

I'm so sick of this. I'm sick of my friends suffering, and their kids suffering from stuff doctors can't ''see'' so obviously they can't get their big doctor head around it.
It's a tumor right in front of your face!! It doesn't MATTER if it isn't cancer (yet), it causes pain! It is THERE. Doctors are happy to pump you full of pain pills, but God forbid you ask them to use their doctor skills to help you.
I'm sick of the ignorance of people who don't understand NF. It's a shame when doctors can't even spell or pronounce the disorder.
I was six and I could spell the damn word. N-E-U-R-O-F-I-B-R-O-M-A-T-O-S-I-S! Spelled the way it sounds, people! If a girl like me with a speech impediment can say it, I'm sure you can wrap your lips around it.

I'm sick of insurance companies. I've been having trouble obtaining insurance for awhile now. And god forbid I USE my insurance that I pay for to get the one MRI I need every 5 years. Actually, who knows how often I need an MRI.
My very former Neuro Doc was so ignorant about the disorder that I don't even know what could be wrong with me. This woman told me that the bumps on my head were "Pimples" Um, yeah, it's called NF, Lady, maybe you should look it up sometime. And laughed and told me I need to "cut back on the caffeine and maybe not have such a tight ponytail" when I told her I've noticed more frequent headaches.
You asked me how I was feeling, I tell you and you give me reasons that are not only insulting, but make you look like a moron. Sorry, "Neuro Doc", but judging from your degrees I assumed you were a doctor from a good university. My mistake!  By my calculations, it's costing me  over $12 a minute to sit in front of you being told it's pimples. A ten minute appointment. Not counting the hour in the waiting room.

And my NF is mild! What about my friends who have NF much worse than me!? My friend's daughter, who needs brain surgery and is having so much agita? If I'm struggling to be heard, what about her? My friends with actual tumors? If I can't be heard, what hope do they have? What hope do any of us have? It's a progressive disorder. Can you understand how that makes us feel? I don't know how I'll be in one year, the rest of my life doesn't exist for me till I get there.

Which is why NF research and promoting understanding is so important! Maybe one day, their kids will grow up in a world with so much better treatment, maybe a cure. This is why I have been such a pain about NF this month. It is NF Awareness Month and this one ranting post is only the tip of the iceburg that is NF. A little sliver of what we go through, the struggle to be heard by doctors and evil insurance companies.

If you read this, maybe you'll start to understand.

End Rant.

Tuesday, May 4, 2010

"But I am this person."

"At a certain part in your life. Probably when too much of it has gone by. You will open your eyes and see yourself for who you are. Especially for everything that made you so different from all the awful normals. And you will say to yourself, "But I am this person." And in that statement, that correction, there will be a kind of love"

I'm lucky to have discovered who I am at a relatively young age. When I was being tortured and ridiculed, things thrown at me, hair pulled, and other things probably blocked out during my horrible middle school years, I had one sliver of hope. One little shred. Knowing I was me. Knowing that this is me. I was so stressed out in middle school over the torture, I was on sleeping pills and had high blood pressure so bad my vision would sometimes blur.
But I kept plowing on, while the emotional scars run deep, I still can't help but be myself, and be okay with it.

 I have NF. It makes me so weird and awkward and talk fast and have this personality of oddness that wants to express, no matter how weird someone thinks I am.

"But I am this person." But I am. But I am me. I tried to be a little different, but that didn't last more than an afterthought. I can't be different. I can try and slow down when I talk, and control my mood and temper, but I can't fix this. I can't fix the girl who wants to sing her sentences, or dance in place, eat Kettle Backyard Barbecue Chips with a drizzle of honey.

I learned by the end of middle school, if someone can't like the crazy, they can't like me. And I stuck with that. Shunning drugs, alcohol, boys, even staying up late. Because it wasn't me. And I didn't want to do that stuff, nor did I want to just to become popular. Seriously, can you see how stupid that reads?

.......It was a very lonely three years, where the only thing that matters is belonging. Acceptance. Cool. I would try and conform; virtual pets on key chains, Gel roller pens, cans of soda with lunch. Honestly? It didn't help. The damage was done. I was hyperactive and strange.

This post comes from watching "Phoebe in Wonderland." about a girl with OCD and Tourettes.  It's such a good movie. The quote at the beginning of this post is from the movie, spoken by Phoebe's teacher for Alice in Wonderland. And I love it.

Because that's how it's been my entire life. I am this person. I was me when I was 6, and head butting people to say "Hello!", I was me in my bucket hat and purple sunglasses phase. I was me when I finally found a friend who was herself also, and we were two wonderfully bunches of laughter and acceptance. I'm still me, at 24. Only now I'm more of a weird, hyperactive adult, who now only occasionally head butts (As a joke. I admit it), with a boyfriend  fiance who not only loves me, but loves my strange, and embraces the weird that is Jenni.

I'm not sure if NF has made me so strange, but it has given me the excuse to say "But I am this person." Like it or not.

Monday, May 3, 2010

May is NF Awareness Month!

Tumors are just a very small part of NF (neurofibromatosis). It varies from person to person, day to day, year to year.

There is so much to write about it, that it is overwhelming to even to think about where to begin.

My spots are a big part of me. I don't need tattoos. I have this spolotchy coffee and cream colored blotches all over my body, in the oddest places; my back, my hip bone, the crease under my arm, my legs. All different sizes and shapes. I have a strong emotional attachment to them. Because it's a reminder: I have NF, and it is a strong part of me. It's a visual of why I am so quirky and weird and odd....Of why I worry about my mortality, about my future, future possible kids (if I make it that far). What will happen to me next year?

My NF is mild, and I am lucky for that. I know too many parents who has a child who has already undergone brain surgery to remove tumors. They have constant headaches, itching, vison problems, nervous system problems, severe learning disabilities, I could go on for pages to document every little thing NF touches.
This disorder is so devastating because there is no treatment, no cure, it changes constantly and from person to person. You cannot control it, or predict it. Only hope. Hope and MRIs is all we really have.

It's so important that word spreads about NF. It affects so many millions of people. It's more common than any neurological disorder and yet no one understands it or has heard about it.

Even doctors are seemingly clueless. I want people reading this to understand how frustrating that is. My former neurological doctor insisted that the bumps on my head were pimples, even though I -knew- they were little bumps that frequently occur on the head with NF. When I mentioned headaches, she sighted that "my pony tail is too tight." joking or not, NF isn't something to be taken lightly and with such ignorance.

It angers me that I was treated by such an ignorant doctor but what makes me more angry are the children and parents who are treated much worse than I am, going beyond ignorance and into total lack of care and stupidity.

I am sorry that I am unable to express NF properly. But maybe this will bring you to other NF blogs, or CTF.org  
May is NF Awareness month. I have always respected other developmental disabilities, and things like Autism and rare things such as bilateral perisylvian polymicrogyri.   

So I ask that you try and respect my neurological disorder, and spend a few minutes learning about Neurofibromatosis