Meet Anne. Has Cone Rod Dystrophy which includes decreased sharpness of vision, increased sensitivity to light, impaired color vision, blind spots in center of the visual field and partial peripheral vision. Start off with if she’s quieter due to her being a woman, Asain or disabled. The Asian’s tradition is extremely tough and instill less toxicity with her family. Talk about living in Canada being surrounded by white folks basically and changing traditions. Diagnosis came late due to parents having limited English and just accepting her “normal.” With being diagnosed late in her 20s, she developed strong muscle memory and memorization skills to compensate for her disability. Finish up with new daily persistent headaches where she had to quit her job and be on bed rest dealing with a chronic illness and depression.

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4:00 Being an Asian woman causes you to not show your feelings as a sign of weakness
7:00 We’re slowly turning into our parents
9:00 Must be really nice being Canadian
10:00 Surrounded by white people basically
11:00 Too Chinese with white folks and not Chinese enough for Chinese people
16:00 if I was diagnosed earlier, I may not have accomplished as much
17:00 what triggered you to get diagnosed?
20:00 Retina Specialist confirmed I’m not crazy
22:00 Always been a really hard worker to compensate and prove oneself
25:00 how did you feel when you got diagnosed?
29:00 having new daily persistent headaches with a pain 4 to 5


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I'm Joe Sooch. I have Fibrodysplasia Ossificans Progressiva(FOP) where my muscles, tendons, and ligaments turn into bone. I get flares/swelling all over my body that can last a month to 2 years and bones will form thus locking my body into place. It is extremely rare with about a thousand cases on the planet. I am basically 95% disabled and permanetely in a wheelchair.