health
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.
Wikipedia: Per aspera ad astra
The Loss of Hope | Virtual Dave…Real Blog.
I have made a career of calling people to service. In the classroom, on the web, on stages around the world I have tried to equip an army of the hopeful to improve society. I never made a promise to that legion that our cause was guaranteed, or easy, or simple. But I did try and give hope. That hope continues with or without my cancer, or my very life. But while I have the ability to put towards to it, I will do so with hope.
I am very proud, and hope-filled, to call myself among those who are answering your call, Dave. I will never, ever forget what you told me when I was searching for my research agenda. It was as if you knew, you knew, that what I was actually, really looking for was my life’s purpose. We are gladiators. I salute you.
My 5th year brainaversary: celebrating 5 years of survival after brain surgery.
July 28, 2013. It has been 5 years since my brain surgery. Looking back, we were not sure I’d survive. Or if I did, how well. On top of that, the earthquake during my surgery seemed to indicate that my time had indeed come. Turns out, I’ve held up pretty well, considering…
So here’s to more years to come (cross fingers). Oh, just in case you were wondering, yes. A brainaversary feels much, much better than a birthday.
I have Type 2. I’m not overly sensitive about it. But my patience is not infinite either.
Watch “My 3 Cents on Cancer: Jack Andraka at TEDxSanJoseCAWomen” Video at TEDxTalks.
The possibilities of a connection culture are astounding. Nurturing ideas, saying yes, connecting with others…can save lives.
Jack Andraka from Crownsville, Maryland. Grand Prize Winner of the 2012 Intel Science Fair. Age: 15.
Diabetes Art Day 2013 | Diabetes Art Day.
“Your future is cloudy.” I hope not.
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.
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