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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

I always had problems at work and never had any idea why. My family always got mad at me telling me it's my fault, I must do something very wrong. After loosing two jobs I was very depressed. I continued on as my family pushed me to the next job. Ihad just as much trouble with the next job and the one following. I joined a survivorship program at Memorial Sloan Kettering Cancer Center and was going to a psychologist and she made me aware that most all my difficulties are due to late effects from radiation. I am still working with her tofigure out why I can not hold a job. My last manager kept telling me I
don't communicate with others well. I might have the same problem as you. Difficulties are
magnified when family members blame you for everything and don't believe you or try and help. My life has been in the control of family members cutting me so low that I was near
leaving.

Mannie
Posts: 51
Joined: Oct 2008

Matty,

I have so many of the same experiences that you have had, I've just never replied to you before. I know exactly what it is like to have family members blame you for things. My mom in particular will criticize me over conversations I've had with people because she thinks that I intentionally have said things to make them mad. I just misread other people's emotions a lot. The radiation has definitely played a role in my health, in all aspects. For example, like you, I can't tolerate the heat either. My organizational skills are quite poor at times. That basically means that I need to have a day planner that I check regularly and paper and pen. I'd like to go back to school but take it slow to see how it goes first. How did you do in school? Well, Take Good Care of Yourself.

Mannie

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