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Invisible disabilities.

ILIVE
Posts: 3
Joined: Apr 2003

I was diagnosed with the 5 cm oligodendroglioma in my left frontal lobe in April 1996, had it surgically resected at time of diagnosis, then followed by six months of chemotherapy and six weeks of intensive radiation. I have weathered all the trauma remarkably well but it has still left its mark, primarily in my cognitive functions (ability to process thought and understand written or spoken media). I have done well with continuing education, achieving a BA in 2000 and am considering going for an MA in Education and becoming a Special Ed teacher. But I would not have been able to accomplish that without help from the Services for Disabled Students Office at the university I attended. The problem I have is with family refusing to cut me some slack when my difficulty understanding verbal commands costs me a job (which has been the case with every position I've had since 1997). They insist that I am imaging my disability(ies) and that I need to "grow up", "stop slacking off and start acting like a functional adult". "You graduated with honors, there's nothing wrong with you." I graduated with honors by taking only 12 units (3 of which were for being a teacher's aid in a lab and 1 or 2 units for PE courses) and lots of assistance from notetakers, readers, and private testing facilities where I had twice the regular time to complete the exams. I'm tired of my family coming down on me and not believing my answers. I've tried ignoring them, but it still hurts. Does anyone have any ideas of how I can cope with this?

mousiezavala
Posts: 1
Joined: May 2003

I don't know how to deal with this, other than having a cancer doctor come to where you live and tell you parents to LAY OFF.
Are you able to maybe move away from these people?
do they know how stupid they sound?
Where do you live?

hayjude
Posts: 3
Joined: Oct 2003

I have had an oligodendroglioma/astrocytoma mixed in my right frontal lobe. I had 2 surgeries, chemo, and radiation, and am now in my first 2 months of "wait and see". I am a certified special ed. teacher. I have yet to see how my cognitive functioning will be when I finish recovery from radiation. I would try to get someone with the most open mind from your family to come to a Dr. apt with you, or perhaps a doctor could write a letter that you could show them. It is hard to believe that there would be such a lack of sympathy and understanding after all you have obviously been through. Another suggestion is to volunteer or work for pay as a special ed. teaching assistant. You would be able to judge whether the work is something that you like and can handle. Having cognitive difficulties definitely gives us help understanding students with disabilities, but we also have to be able to function well as teachers in the positions of responsibility. I have a great fear that there will be a day that I won't feel able to work, but I also intend to work as long as I am able.

lltitus
Posts: 5
Joined: Mar 2004

hayjude;
Its been awhile since U posted but I have been dx since May 2003 with the same as u. I have had surgery, in the midst of chemo with Radiation to follow. May we compare notes? I have so many questions.

Matty
Posts: 21
Joined: Aug 2008

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