You Deserve To Have Me Count Against Your Dropout Rate

When I dropped out of High school I was months away from 18. So that still requires a legal gaurdian to sign you out. My father went with me that day. My Mom being a highschool teacher doesn’t have as flexible hours as my father.

When we got there they took us into the principals office. Where all of a sudden a realize I’ve been bombarded by an entire education team. The Superintendent, Prinicipal, both Vice Principals, counselors, teachers, school board reps… it was a circus all lined up in a horseshoe of overbearing male posturing. I waited to see who they had assigned to be ring leader.

Of course, the nice Principal and very nice vice Principal who had both known me since I was little had been given tthe job to do most of the speaking. I wonder how they were convinced it was right to treat me the way that followed? They tried reasoning and twisting and political speak.They all started chiming in as my father and I defended our points valiantly, though depressing that we had to fight to begin with. I was raised by a politician and I understood their bullshit wording and the reasons behind the frantic fae smiles. They didn’t think I’d done my research. Sorry folks, there’s a reason your losing one of the smartest kids in your school. Cause they wouldn’t find a way within NCLB to get my credits to work.

Yet still had the gall to try to convince me to “Withdraw with the intent to homeschool.” Which isn’t the same thing as dropping out of the system. The difference being I don’t count in their state report card as in their drop out rates.

Oh no sirs! We kept trying to explain, not that we got to talk much. Which is saying  a lot coming from a professional talker. Finally they did something that still baffles me and I am not sure is legal or forgivable.

They removed my Father from the room to talk to me alone. I am VERY very lucky I don’t get intimidated. Cause they then tried to convince me it was my parents making me do it. I flipped out on them. I’ve made all the big choices in my life since I was old enough for my parents to explain things and for me to do my own research and understand it.

How dare they minimize me that way, I was not someone to be “handled.” I refused to speak with them farther until they brought my Dad back in the room. But first I chastised them looking them each in the face, verbally reminding them of the promises, the contracts they’d signed agreeing to all of this. They had broken every promise toward my education they made when I first started High school.

Then I went silent and waited.

They started up again and I got mean. I flipped out. I heard later that the entire school’s front office heard me (I don’t have a quiet voice, it projects naturally, and I was furious at that point) knock them all down a peg. Ending with the fact that this was my decision. “Hand me the papers to sign and bring my father in so he can sign his half as well. Because I absolutely will count against your drop out rate. Because I DID the work. I did more than your students who are about to walk, but you won’t let me from a technicality that you aren’t willing to help us find a way around. Bad form. You’re educators. Not the people who derail those who want an education. When dealing with a student who has the system setup against them it’s important to have their back and find the loopholes and back doors in the system to help those students be the success stories they should. I don’t mean cheating, I’m talking about finding a way for them to have an equal chance. But you all, everyone of you, failed with me. So more than anyone I know, you deserve to have my number count against you on that dropout rate!”

They brought my father back in.

A few of them had tears in their eyes, all of them were apologizing.

All of them deserved to feel that way. They deserved to not get to cushion their emotions behind a desk. To recognize that if at any point one of them had tried to help figure out the new system when it came to me, we wouldn’t be there.

But we were and I dropped out. That was 12yrs ago

Always Almost There

I feel like I live my life in a perpetual state of almost there.

I am always almost there.

Or that’s what everyone tells me. When I catch them up on my life. Tell them about the turtle pace I’m living. The one accomplishment that’s new since last time we talked, if I’m lucky to have one. I have so many things that I have almost accomplished.

When you get far enough behind it kind be next to impossible to catch up. In those cases I’ve found it’s just easier to start over with a new dream. Try again. But this time I don’t seem to have way to do that.

I’m stuck in this stagnate almostness. While I watch the people around me moving forward and moving on. Doing amazing things, living! It’s so awesome to hear about, to know these people I grew up with are living their lives.

Choices: Between a Rock and a Hard Place

I think it finally hit me how much all of this medical choice is derailing my life. I always move through everything one checklist after another. But I just recently got a chance to line up those check lists and realized almost all the boxes still haven’t been crossed off. I make all of these lists, but only manage to get a few things on each list completed. Don’t get me wrong, I am proud of myself for each of these chores or achievements. Unfortunately, it also means there are a ton of things that I don’t ever get to complete. If I do manage to complete an entire list. It certainly won’t be in what a normie would consider a “reasonable” length of time.

Accurate Medical ID Bracelets

Having accurate Medical ID bracelets (or a necklace) is pretty important when I have out-of-it-like symptoms that can make it seem like I’m having a totally different issue medically then is really going on. For example, quite a few of my symptoms would cause a first responder to give me aspirin which could cause me to OD. So, a bracelet is really important when you are dealing with the extensive medical history I have and the complications of how each individual situation has to be handled.

I also am of an age and live in a college town where it is easy to make the assumption upon first seeing me, in certain health scenarios, that I am just totally fucked up!!

Ggrrr!! Which is super unfair, especially since I end up being the DD half the time cause I’m the only sober person! I mean seriously, who wants to mix migraine meds and alcohol?! Not I, thanks, the way chemicals already act in my body…with my luck, I’d be the first proven case of human internal combustion!

For another example, when I am having problems with vertigo and migraines and a few other cognitive funzies that can involve symptoms like swaying, falling over, weaving all over the  place, puking, not being able to track with my eyes, slurred speech, confusion, not following a sentence or conversation… Well? What did it just sound like I described to you? Alcohol poisoning? Drug interactions or overdose? Yeah that’s what it would seem like to anyone just looking off hand, even me. That’s absolutely what a paramedic or cop will assume when that is what they see 90% of the time on the job in this town.

Nice thing about paramedic training though (and cops) is that they are trained to check for bracelets and necklaces. They aren’t stupid, they actually do check.

When we are talking about being college aged, there are too many assumptions that can be made in an emergency situation that will hurt someone with Lupus either due to the disease itself or various meds we are on. Yeah I know, that’s being an age-est (haha), but it’s just reality. It’s also relatively fair, I think, knowing my counterparts/contemporaries without disabilities and how too many  are willing to abuse their bodies so carelessly.

I have always been amazed when a friend is offered a drug and they just take it, because it was put in front of them. My brain goes haywire with all sorts of questions (yes, curiosity as well), but first and foremost, massive questions: What IS that? What’s actually in it? How will it interact with my meds? How does it interact with alcohol? Can it affect any of my Lupus symptoms? A million more questions you can only imagine, but my friend just proceeds to partake in whatever new “fun drug” we have been offered, not remotely worried there might be a negative consequence.

Part of having Lupus is always thinking about what the next consequence might be. Running a dozen contingency plans for scenarios that maybe I just didn’t think of–all of the “What ifs?” all of the time.

Wearing a bracelet and never taking it off means I never have to fear that I will be treated based on an assumption that could kill me. It gives me the confidence to not have to worry that when I need help, really need help, I will be taken seriously.

It’s important that when you get your bracelet you consider the most important information for a first responder. For instance I have a LOT of allergies to basic meds. SO I have Multiple Allergies written on my bracelet but my bracelet also says over at the bottom, because on the back I have numbers for doctors so that my records will be acquired immediately. Also because I am over 18 years old I state on the bracelet to call parents! I give their names and phone numbers as well! I even have a charm to hang behind any necklace pendant that has the medical symbol in red and on the back of the charm it says to see bracelet. There are other necklace charms that can say see wallet card, or actually have all of the information on the necklace pendant, or even have electronic chips with all your info!

Med ID necklace pendant hangs behind any cute pendant that goes with my outfit;)

Med ID necklace pendant hangs behind any cute pendant that goes with my outfit;)

 

This is the back of MY necklace charm. The charm I have is based on the fact that my bracelet is what contains my pertinent information.

This is the back of MY necklace charm. The charm I have is based on the fact that my bracelet is what contains my pertinent information.

Charm on my Medical ID bracelet! The red catches the eye of the person trained to look for the symbol!Charm on my Medical ID bracelet! The red catches the eye of the person trained to look for the symbol!

Wearing My Chemo Masks

 

Woohoo... not bad. easily adjustable!

Woohoo… not bad. easily adjustable!

As of the last few days, my masks came in! Super excited, so technically I can go out in public… somewhat… I have to be careful though! Unfortunately, the actual quarantine days have started, so the point where the chemicals take enough affect that they actually make my immune system start crashing… like in slow motion. So, somehow I already managed to start developing an infection! hahaha I would! Lots of sleep and staying in bed hoping I don’t get a fever, cause then the docs freakout:/ Which I suppose technically means I’m supposed to freakout too, but why waste the energy!

Of course I call all of the requisite doctors so they knew I’m fighting off something, then went back to sleep!

Chronic Illness & College

School work, making it to class, processing what I’m reading all depend on the day. Some days its fun. Other days that part of my brain just doesn’t live in my head. And, of course, I do mean my head, not my mind. It’s physical.

And, of course, it’s not just my head! Will my joints and muscles, which are necessary to complete any progress for the day, actually  function! Will my brain send undulating waves of vertigo with its ensuing nausea?  Cause let’s face it, there is a point where I just don’t have the fight in me that day. There are just days where I can only  show up late to class, fall asleep during class, or get up and leave class. And then there are the days when I can’t understand the reading I did twice or those days when every time the prof speaks sharp pain shoots in my brain. And those days when I can barely sit in the seats from pain with the students low chatter throbbing in my brain and distracting me. And those days when I’m not able to take notes cause my hands are too swollen.

These are all just issues I deal with 

IF I get to class that day!

Student Allies

The University’s Department for Students with Disabilities forwarded a request from a journalism student looking to interview students about dealing with their disability while in college. I volunteered as soon as I read it! The only way for people with disabilities to integrate into society as normal is by educating everyone about people who live with disabilities. Disability advocacy and alliance with those who do not yet have a disability has to become “common sense.” For this reason it is important to support students who seek to better understand how people with disabilities negotiate college.

It’s amazing how much more often this happens today than when  I started college 7 years ago! Back when I started college, students didn’t seem to want to hear anything about disability as a social or political issue. Now, many are approaching me and asking to hear about it–even when it is not a class requirement!! I am not sure if this change in attitude is indicative of the progress of the overall Disability Movement in our country or if it is the result of my school developing degrees and liberal education classes that has appeared to open minds about disability? Either way I look forward to seeing what happens next.

Here is an edited version of how I answered the student’s initial questions:

Please remember “person-first language” when referring to someone with a disability. Think of the person first then what the “condition/problem” is. For example, rather than saying “disabled person,” say “person with a disability.”

As with any other minority group, only those with the disability can refer to themselves as disabled. Why? Because when people with disabilities call themselves “disabled” it can be empowering; whereas when a person without any disabilities calls a person “disabled” then the person with the power is positioning the member of the minority group–therefore making it a slur.

1. What is your disability and can you please briefly describe it? (If you are willing to share)

I have Systemic Lupus Erythematosus along with a number of other conditions. I was diagnosed with Juvenal Rheumatoid Arthritis at 18 months old. Since then I have been diagnosed with about 33 auto-immune conditions with their complications including the lupus, fibromyalgia, Sjogren’s syndrome, Raynaud’s syndrome, chronic pneumonia, chronic migraines, permanent vertigo, strokes, cognitive confusion, recurring pleurisy, recurring pericarditis, ADHD (yes, ADHD can be related to auto-immune issues).

Having an invisible chronic illness and going to school can be an amazing balancing act! Chronic illnesses such as these are sometimes called the “But you don’t look sick!” disease! (To help you understand how one lives with such conditions, go to butyoudontlooksick.com and look up “The Spoon Theory” by Christine Miserandino! Miserandino and the others at butyoudontlooksick.com were among the first to start to encourage young women with chronic conditions to advocate for themselves. Their encouragement has become a movement! :) )

Technically Lupus is an auto-immune disease where the white blood cells, the body’s defense system, attacks a person’s own RNA (i.e., ribonucleic acid,  which is a molecule in the body that works as a messenger for DNA). Rheumatoid Arthritis results when the white blood cells attack a person’s own joints as if those joints were an invading disease. Having Lupus is like having Arthritis in every part of my body: since RNA is in every part of the body, with Lupus, the white blood cells attack not only  the  joints, but also muscles, skin, organs, blood cells, nerves, etc. Almost everything in the body might end up being attacked.

A good way to describe Lupus is think of the worst hangover you’ve ever had then add on top of that muscle and joint pain like you’ve been running marathons daily and injured every limb possible in the process. It’s extreme pain, extreme exhaustion, and feeling physically ill all the time (like migraines and nausea). For example, earlier this week I had to leave to puke in the middle of my meeting with a prof. But unlike a healthy person I had to “puke and rally,” not at a weekend party, but by going back to class after puking (and without an awesome reason like having had fun the night before :) ) Most normal kids don’t function when they are as sick as I am almost everyday. Most go to the ER if they wake up one morning feeling like I do daily! But I’m that sick on an ALL THE TIME basis, so I can’t let it be a reason not to get things done. It’s hard to balance classes, social life, sorority, work, chores, etc. when my body fights against me every step of the way!!

2. What challenges have you encountered at College regarding your disability?

I deal with a lot of people including College profs and administrators who don’t believe I’m sick. As they put it, I’m a good looking girl, I can’t possibly be as sick as I’m claiming?! But that’s why it’s an Invisible Disability.

Some departments and professors are unwilling to work with me, by adjusting to my needs with the necessary accommodations, for me to get through their class. I have actually had a prof tell me that my grade wasn’t important enough for them to take the time to meet with me outside of class or help me by providing accommodations! I’ve also had a prof tell me I don’t deserve accommodations, because his other students don’t get them, so it wouldn’t be fair. I tried explaining that the other students aren’t sick. The prof said that was irrelevant! I have had to medically-withdraw from classes half way through a semester when professors, who said they would work with my condition once I am in a bad Flare-up, decide they don’t want to put the time in… despite me being willing to do whatever they require that I can so I can finish their class!

3. How has this University helped you become integrated into college life taking into consideration your disability?

This university itself has done little, if I didn’t have as strong a personality as I do and have as many people built into my support system before going to this University, I would never have made it this far.

Though, Andy (head of the Department for Students with Disabilities, ODR) is a god-send! He is absolutely in the corner of every student registered in his department. He will try to find out whatever he can to help each student the way they need it. All of us, even with the same conditions, need different accommodations. Andy takes the time to find out what those needs are and figure out what the university is willing to provide, then he follows through to make sure it actually happens!

 One problem I’ve found though, is that this university’s departments are not required to work with ODR if they choose not to. The department is allowed to put policies in place that undermine the power of ODR. The only things the departments can’t override are ADA (since that’s Federal), but even then you have to have the strength to fight for it, especially if it isn’t physically obvious that you need the assistance. When departments create policies that fight the spirit of ADA, they tie Andy’s hands behind his back. Why have a department to advocate for students and then allow for policies to be passed by departments that utilize loopholes?

My university recruits students with the claim that they will facilitate integration into campus life for students with disabilities. Once you get here, it becomes pretty obvious that their “help” is more theory than reality. When you’re talking about a group that is already so marginalized in our society as people with disabilities are, it is people like Andy who are the only thing standing between them and the roadblocks that stop students’ progress in college.

Though I am very lucky because I have managed to find a few professors and departments that actually consider educating their students to be a higher priority than sorting them through some sort of mythical “objective” grading system. Working with each student to find what that student needs to learn as much as they can is just what it means to be a teacher! Isn’t it?

 The access bus is also a life saver! The women who drive that bus are amazing, caring, open, and understanding! They always ask how I’m doing and remember details about me and my schedule in a way that makes me feel like somebody has my back. I wouldn’t have made it to any classes freshman or sophomore year if that bus didn’t exist–let alone any Greek events! But, my university has cut the bus budget leading to a reduction in staff and, therefore, accessibility of the access bus, which often means the backlog of riders makes me arrive late to class. To properly aid students with disabilities on this campus, the access bus needs much more than it is now allotted.

4. Have you traveled before? Why or Why not?

I travel inside the states. I have to be near people, wherever I go, who live in the area and know me and know my health issues. That way if something happens to me I am close to help. Also barometric pressure change affects my health condition, so travel between states can be hard on my system anyway.  I can’t get most of the vaccines required to travel to some places overseas, so I haven’t been since I was little. My sister travels overseas all of the time! She helps me feel like I am part of it by sending me designer earrings and panties from every country she visits. :)

5. Do you plan or want to study abroad?

Want? Yes, more than anything I would love to study abroad. I was pretty good in French before my bout of strokes. But there is no chance, with the difficulties I have encountered dealing with the University’s bureaucracy, that I will have the opportunity to study abroad. We can’t risk me being in another country and needing help with my health, as this college is so hands off when it comes to non-visible health conditions! My parents do not believe (nor do I) that I would have the assistance necessary if I developed severe health problems.

Izzy

7th year Senior–cause I can only go part time and had to change my major so many times until I found a department that wanted to work with a person with a chronic illness. I have a lot of useless credits from before I  found the right department!!

 

AASECT Licensure

I officially started my AASECT (American Association of Sexuality Educators, Counselors and Therapists) licensure process today! I’m so excited! My mentor and I went through the guidelines and I have to sign something that she puts together and sends in to request permission to begin my hours, then everything I do after that with my  mentor counts toward the licensure!

I’m really excited! I looked up stuff about the AASECT annual conference. This year it’s in Monterey, CA. Talk about somewhere I would love an excuse to visit! At the conference they offer the chance to take tons of seminars that meet a lot of my required hours toward certification.

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To begin my day I barely got out of bed. Let’s not forget I have been turning into an 80-year old lady quite rapidly this week! My crippled stiff throbbing joints weren’t having it this morning when I tried to wrestle my way into an outfit. I wanted to wake up to work on more of my prep reading for this meeting, but managed to wake up with only enough time to run around like the hens when the rooster gets released in the pen! I stopped to get myself a coffee at my less preferred coffee shop in town (I don’t do chains, so screw Starbucks all together) cause I really want some pumpkin latte thanks. I haven’t had one yet this season, I deserved it! I’m thinking to save money I’m going to look for a pumpkin spice creamer or flavoring syrup at the grocery store tomorrow. . . if I make it there.

See I’m not sure how I’ll be doing tomorrow as I ended up have to leave my meeting to go puke a third of the way through :( . I am so lucky that I have the mentor I do! I’m not sure if it comes with being a parent or if she just has that go-with-the-flow personality, but my Mentor said, “Do what you need to do Iz. I’ll finish typing the requirements for your work this week.” Awesome right? So I go puke, get myself together. then I rallied baby!! I went back to her office and finished my meeting. I am soooooo proud of myself every time I do that.

There is always that moment when my head is pressed into the palms of my hands as I sit on the cold tile bathroom floor. I’m trying to get my temperature to go back down, and all of the energy I thought I had stored up has just been depleted, all I want to do is just lie down on the floor and not bother with the rest of my day. It can take a lot at those times to muster up energy that doesn’t exist, plaster a smile on my face, and go back to my day like it’s just another normal day. For me it is. But I don’t know anyone else who would go to class after that. Let alone function enough to build a schedule and road map for a class curriculum! I deserve ice cream for that!! Don’t you think?

 

Paying the College Bureaucrats

I got an email at the beginning of this week. The email said I needed to pay my Bursars bill for the college…

I’m confused, didn’t my Dad pay for 7 credit hours already even though I’m only taking 3 credit hours? Why would he have to pay again?

Well he went in and paid all over again anyway. He doesn’t want to risk another very confusing Drop from my classes! Can you believe this?! They seriously are doing this… I don’t even understand what is going on? My Dad says we will wait and find out what the head of the Office for  Disabilities Resources thinks we should do about my situation. This is really frustrating!!

My Dad has now paid for a total of 10 credit hours this semester!! I’m taking 3… WTF!?! Plus side; I was able to set-up to start working with two of my professors on Incompletes, as well as my AASECT Licensure!! Happy Moment **Doing a little dance in my seat**

I Got Your Back Iz

That was the best thing to hear on the phone when I picked it up to hear my messages. How did I manage to find these few professors that were willing to understand what I go through. Professors who are actually willing to work with my issues. They understand that I’m intelligent, that I’m trying, but I can’t always do it. The real problem is, why aren’t all profs like this? Why don’t they care this much about all of their students?

 

This professor is going to work with my health… not pretend like it doesn’t exist and create unrealistic expectations for my progress. This is what it is to be a teacher, truly to teach.