disability
My Disability May Be Invisible, But I’m Not! | Disability.Blog.
Many people are genuinely willing to help, but do not know where to begin. Because of this, we often offer by saying, “Call me if you need anything.” This is a great effort to reach out, but unfortunately, it does not work. For that reason, we cannot put the ball in their court and expect them to call us. So, how can we help if they will not ask when they need it? Simple…we call them!
Most of the time, I feel I have to apologize for not meeting other people’s expectations of me, even if I am greatly hampered by my various conditions, all of which are hidden, invisible, and unmarked. I often feel that I need to wear some visible sign that I can point to, so I can remind myself and others of the various challenges I experience, regardless of how comparatively mild and unremarkable they may be.
Then, I remember that I am not on this Earth to explain and apologize for my existence.
Click to go to InsideHigherEd.com: Dropping the Ball on Disabilities
As an added bonus, here’s an awesome Bingo card! Share it with your friends!
Disability Bingo v.1.0 by Annaham
You have diabetes! What are you thinking?!?!!!
Pardon me while I slip into my serious persona for a minute. As I have said previously, I am living with very mild deficits caused by my benign brain tumor and the subsequent surgery that removed it.
In addition to this, I had been diagnosed with gluten intolerance and type 2 diabetes. For a long, long time, I have been frightened of eating, drinking, and even leaving my house because I know I will not adhere to the routines I need to stick to in order to overcome my physical ailments.
Then, life decided to throw me a huge curve ball filled with lemons.
These recent events made me realize that, no matter what I do, I will die sooner rather than later. Till then, I can lead a miserable life or I can live my life empowered by forethought and knowledge, tempered with joy and good humor. As a teenager, I didn’t want to live a life of quiet desperation. I’ve reached out to that younger me and agreed with her. We are now part of a 12-step (self-run) program to help us with self-empowerment and recovery.
Most well-meaning people don’t like hearing the news that I have opted to use supplements and work on my psychological shizz in order to get a better handle on my diabetic (and aging) body. It brings out the most ardent mother hens in them. They mean well, of course. I know that. It makes them feel like they are caring for me. But, really, it just makes me bristle. I live in my body, not my doctors, not my friends, not even my spouse or my children. Besides, diabetes and gluten sensitivity are not contagious, so the public health issue is null and void. For some reason, this small, obvious fact (i.e., this is my body and I do what I want) becomes easier to ignore when I talk about my diet and exercise regimen (or complete lack there of). It’s not that I don’t appreciate being cared for. I just don’t appreciate being scolded by people who are in the outer rims of my circles of influence.
I check my BS levels everyday. It’s like being graded everyday. Yay.
So let me say this now–I take full, absolute responsibility for my body, my health, and my understanding of my diseases, including the responsibility of solving the problems they pose (i.e., health care acquisition, prescriptions drugs, and financial burdens). In other words, please trust me with my own health. I want to be good and responsible. But feeling infantilized and being treated as if I don’t know my own body and my own disease(s) just add to my burden. Now, if you feel so strongly, you can be nice and buy my test strips, lances, and prescription drugs. Oh, and I’m due for a new glucometer and these frequent doctor visits aren’t cheap. No? How dare I? Then, I would appreciate more silence. Thank you.
To my good, close friends and fellow diabetes sufferers: This does not apply to you. I hope you know who you are. If you don’t, let’s talk.
“But deep down inside of me I know beyond a shadow of a doubt that this requires so much more courage than pretending I am fine. To live is to suffer but to deny the reality of life and to force all of us to face that reality alone while in each other’s company for fear of being perceived as less than is madness. And worse; it’s a lie.”
via GoodBadblog: The Body is A Haunted House – Ableism and The Long Night of The Soul.
Temple Grandin at University of Redlands, January 22, 2013
One of the perks of working at a university is getting the opportunity to meet interesting people, especially those you may have admired from afar. Often, without having to pay extra.
Tonight, my oldest daughter Maddi and I got to listen to Temple Grandin. Because I am on the working group that invited Dr. Grandin, I had the opportunity to meet her in a small-group setting before her lecture. I can appreciate that many would think this isn’t such a big deal. Ok. To me, it was an experience that I looked forward to all day.
During our small-group discussion, Dr. Grandin answered questions ranging from having a successful life to children and adults with high functioning autism. One of the most central points Dr. Grandin made was the need for children to have “interesting work.” Children who are gifted in one aspect or another will be motivated by their own interests and capabilities. The work of adults is to extend and nurture this natural interest and motivation within the parameters of the child’s stage of development. Therefore, Dr. Grandin said, a 3rd grader who is capable of doing high-school-level math should be able to do high-school-level math in her 3rd-grade class. She also emphasized the need for adults to set parameters and structure expectations so children with special needs (all children, I thought) do not fill their entire time with repetitive activities that reinforce their obsessions and prevent them from stretching themselves. Children with autism (most people, I thought) will tend to focus on the one thing they like to do over and over again, without pushing themselves to move beyond and grow. Children who are drawn to playing video games, for example, can benefit greatly from learning how to create, design, and program their own games. I was delighted to hear Dr. Grandin speak well of MOOCs and makerspaces as potential places on the interwebs and IRL where a young mind can develop and follow her own inclinations and still find benefiting structure. But, Dr. Grandin did emphasize, the adults must help children set limits and parameters to their pursuit of knowledge and skills. Classes can provide this needed structure and discipline. Makerspaces can provide the social encounters children need, while at the same time focus their desire and inclination to build and create.
Another tidbit of thought Dr. Grandin provided during the small-group discussion time was the importance of physical activity. Children with autism need this (don’t we all?). The problem, really, is doing it. Children with autism who display argumentative and combative behaviors benefit greatly from daily physical activity. I admit I hate to exercise. But I don’t doubt there’s something to the mind-body connection that I don’t benefit from because I have a hard time motivating myself to move my body.
Anyway…
During our small-group discussion and the larger lecture, which drew a crowd that filled most of the Memorial Chapel at University of Redlands, Dr. Grandin emphasized the different ways of thinking and the woeful condition that precludes many people with these differences from succeeding or being accepted by others. She stressed the need to teach work skills and incorporate work ethics in our education system. These are things that used to be part of the education curriculum, but have disappeared in favor of other job-related skills. Learning how to do things, through agricultural science, farm and animal care, horticulture, wood shop, or cooking classes, give children the means to discover and develop their own ways of thinking. This is just as important to success in life as keyboarding, balancing a checkbook, and marching in line while playing a brass instrument. In fact, they support each other.
I can’t agree more. Peter and I chose to send our two daughters to a Montessori school for precisely these reasons. Maddi, a sophomore at The Grove School, is thriving at such an environment. We plan for Penny, currently a 5th grader, to attend The Grove once she is eligible at 7th grade.
Image from BBC News
In December 2012, I published an essay on hidden disabilities and chronic illness for APALA’s website. APALA = Asian Pacific American Librarians Association. Please follow the link below. My essay is accompanied with resource links to help readers learn more.
Many physical and mental illnesses, conditions, and disabilities are not readily apparent. We are often compelled to say, “You don’t look sick, so you must be fine.” I, too, find myself thinking such thoughts and acting upon them. Learning to cope with a health condition also involves learning to cope with how other people treat and see you.
“‘Everyone You Meet is Fighting a Great Battle’” by Melissa Cardenas-Dow | APALA.
The first ever MRI picture of my brain tumor
In the Spring-Summer 2011 issue of the American Brain Tumor Association newsletter, an article caught my attention. Its title was “I may look OK, but I’m not.” Catchy. And inspiring. This post is my attempt at coming to terms with my own experiences.
A very wise person I greatly admire once said that medical information is protected because there’s incredible prejudice against unhealthy people. Then I remember another very wise person I also greatly admire said that personal experiences and accounts help others build empathy so we can all reach common ground and shared understanding. Ok. Not quite lightning-rod revelations. Oh, but, the risks!
Dare I? Here goes…
In the summer of 2007, I began feeling a strange dizziness. I mean really dizzy. By February 2008, my dizziness got so disruptive that it affected my ability to see normally. At first, I had to wait a few seconds each time I moved my head till the dizziness subsided enough for me to carry on. Then the dizzy spells progressed to being triggered by eye movement. It was a hassle. Just imagine driving on a busy street in such a state. Or walking on a tree-lined sidewalk. My stabilizer was busted, but I had other things to worry about, so I did my best to make-do.
A friend of mine who happened to be a general practitioner told me, ever so nicely, that perhaps it was time to see a doctor about my condition. It was probably just benign vertigo. Nothing to worry about.
Seeing the wisdom in this, I saw my primary care provider, who, as my friend predicted, diagnosed me with benign vertigo and sent me off to a physical therapist who specialized in such things. After 3 sessions or so of physical therapy, which momentarily worked, I decided to get a referral to a specialist. The dizzy spells were that annoying. My head felt like one of those liquid motion paperweights that are so amusing to have on your desk. A couple of inconclusive tests later, my ENT decided to order an MRI of my head. He told me not to worry. He didn’t expect to find a tumor. And I was glad he was so persistent.
In late May 2008, I did the graduation walk for my MLIS degree, after 4 years of taking classes, working 2 part-time jobs, and interning on the side. Needless to say, graduation day was a happy day for both me and my long-suffering husband. Not to mention our 2 young daughters. With a distinctly embarrassing moment. As we new grads were filing to walk off the stage, I stumbled and nearly fell face-first onto some stranger’s lap. Luckily I caught myself before I made contact. I remember the sympathies and my mortification. I had been willing myself not to fall, but I nearly did. I remember being thankful that my legs didn’t give out. At least.
A couple of weeks later, I went to my ENT appointment. My doc, normally cheerful, was all seriousness. Then he said it. The MRI scan found a tumor in my brain. I was like, no, he’s got to be joking. Then I remembered that Dr. ENT is a medical professional. He would not joke about things like this. It’s unseemly. I can no longer recall what happened afterwards, how I got from sitting in the exam room to his office and staring at the monitor with my MRI scan displayed. Then to my car, where I gave into hysterics and called my husband and told him the news.
Somehow I made it home from the medical center. And made the call to my employer, saying that I won’t be in for the rest of the day. I had intended to return to work after my doctor visit, but the head spinning and buzzing was just too much. I needed some serious time to think. And to make calls, do some research.
At this point, all my husband and I knew from Dr. ENT was where it was in my head, that it was highly likely to be a slow-growth tumor and non-cancerous. Not cancer. Benign. Good enough. Surgery was likely our best option. But why was it there? How did it get there? What do we do now? What choices do we have? Is surgery really our best option? What happens after surgery? Since the course of treatment is largely dependent on what the heck the thing was, we had to find out. And think and plan for various possible outcomes.
This is already a long story, so I’ll cut to the highlights. I quit my job as a summer intern for a corporate library since I had just started and I knew I was not going to be able to do the work I was supposed to do for the organization. My mind was otherwise occupied and my time much more limited than I had previously planned. Thank goodness my husband was the one carrying our family insurance. I drafted my medical directive, prepared my will, and talked to relatives about future care for my husband and my girls. My husband and I sought a second opinion from within our HMO and sent off my scans and test reports to a well-known clinic for a third. We read as much about epidermoids and ependymomas as we could. We also met with someone who herself had undergone brain surgery, someone we knew from our oldest daughter’s social circle but didn’t know had such a thing happen to her.
I ended up having surgery at my HMO’s closest-to-me hospital in late July 2008. Beforehand, my surgeon warned that we would not know for sure what the outcome will be till after the surgery, if I will end up with impairments in my abilities to walk, talk, or swallow. Radiation therapy might be necessary. None of that happened. But we did our best to be ready for all of it anyway. After 6-8 hours of surgery, a 5+ earthquake during the operation, 5 days in ICU and 3 days in the regular hospital ward, I headed home.
From August to December 2008, I focused on recovery and some mild physical therapy. Some time in December 2008, I felt well enough to apply and interview for a temporary position as a professional librarian at an academic library. I’m still there. Now, I’m a permanent member of the library faculty, currently in my 3rd year of employment.
In a strange way, it feels as if that summer of 2008 happened to someone else and I had simply read or seen the story somewhere else. But my eyes and my ears remind me this isn’t true. But, oh, how lucky I’ve been! No seizures, no radiation therapy, no more drugs. Just the daily morning gagging and occasional MRI scan. And, how could I forget, that hole in my skull that makes my nape feel weird and my vision wonky when I lean against it. So what if I can fail a sobriety test sober. So what? Comparatively speaking, I’ve got it made. And because of all that I’ve read, heard, and seen, I know I’ve got it made.
A sentence in the ABTA article I mentioned earlier rings loudly for me:
“People couldn’t tell anything was different, but I could.”
This single sentence puts many things in great perspective. Its implications go beyond brain tumors.
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