Watching my grandmother deteriorate in health was one of the hardest things I have done, but what is harder is watching who she is become lost in those deep blue eye and be replaced with an emptiness.
I spoke of how I wish the authors had included some insight into the loss of mental ability in the articles with bodily disability and disease, because for me there is a thin line between the two. We spoke about the mind/body split that occurs when there are physical disabilities and sickness but I seemed to be one of the only people who had watched, first hand, the deterioration of the mind and how that effects the mobility of the body and how it can hinder living.
I see how interdependence takes something away from a person (and effects a family) when they are struck with an ailment, whether it be a long term or short term battle for recovery, and when there is no recovery guarantee. You take what you have and you move forward to the best of your ability. Keeping those who are ill within the reach of the care giver and giving up what you can in order to fulfill the needs of both the family and the person in need of care.
I have seen the knowledge gap that Chan exposes about medical uncertainties. When you go to a doctor and they don’t know whether the new vitamins and pain medication will help the healing process or just be another medication that your loved one will be taking every morning. I know what its like to see the struggles of trying to remember if the medication was taken in the morning or whether you know what you had for dinner or that your granddaughter was there for the night. I have witnessed the chaos of not knowing where you are going and then getting frightened when the nurses ask you your name.
I agree with Chan that rather than having the mind/body binary that there should be a holistic understanding of the lived experience. I know that because of the Dementia that my grandmother experiences on the (almost) daily basis that the only thing that she knows is what little she can remember. I know that for her there are white cats that run around the front yard and that there are snails on the light next to her bed. “Other people just can’t see them, I have special eyes.” When there are good days the cat’s are not there and she will remember to take her pills to help with the pain in her joints. But on difficult days there are many other problems that make themselves know.
My grandmother who once took care of me, dressed me and taught me how to tie my shoes is now in need on my help for those very same daily tasks. After her last doctors appointment she looked at me and told me that “My brain is broken”. I reminded her that she was not broken just different than she used to be. Change is inevitable.
For me, the difference in the way people look as deteriorating health makes a big difference in the way that people go on with their lives. I look at the readings for the lived experiences of disability, especially Chan, and think that if society is to change and accept the motion of human life that there will be a better generation of care givers in the future. People will not look at my grandmother in public spaces (in all of her mismatched glory) and see a sick individual with missing mental ability. My hope is that people will look at her as a person rather than a illness.