Skewed Perspectives...

My mom and I were talking and I was telling her my ideas about my dialysis book. I told her I wanted to talk to African-American women coping in some way with a terminal illness. But I told her that some of the people at dialysis didn't care how they treated their bodies. She raised an important point, that it isn't that they don't care, it's because they don't have the same access to certain things that I do. That floored me. And, like mother's always are, she was right. I have access to a lot of resources that many other patients at my center don't. My mom put it in the simplest terms. She told me that some people don't stick to their diets or take their medication regularly because they are in environments which do not practice such behaviors. When it is time to eat, there is no one there to determine whether or not the food prepared is dialysis friendly, that phosphate binder's are taken with each meal, that fluid intake is restricted. They simply eat as they have always eaten, not because they are being inconsiderate but because, maybe, it is too hard to change one's eating habits, maybe it is too hard to find the favorable foods for dialysis patients at the local Stop and Save.

These are all things that I have never really thought about because I have always had someone in my family battling some type of illness. I mean I make up the third generation on my mother's side. At the same time, there is always someone there to ask whether or not I have eaten and what that was, whether or not I have taken my phosphate binders, my blood-pressure medication, my multi-vitamin. Hell, my mom makes me check my blood-pressure daily! My aunt keeps me readily supplied with ensure. And she and two of my other aunts who are also nurses regularly ask how I am doing. One aunt even worked in a dialysis clinic! My grandmother has experience with the dialysis diet because my grandfather had kidney failure before he died, and so she knows how to prepare meals for me during Sunday dinners and when she is too tired, she allows me to splurge a little, but not so much as to make me sick. My mom has had open heart surgery twice and now finds herself facing the challenges of a restricted diet, and so we are in the process of discovering things that we can and cannot eat together. She keeps a pretty tight rein on me also! My dad has even gotten into to act! So, in the end, I must say that I think I do have sort of an advantage when it comes to a lot of things pertaining to some aspects of the dialysis experience.

It never amazes me that my mom can make me open my eyes and look at the whole picture before setting off in some idealistic direction that could have been totally wrong. So, now I must get a group of people who have resources such as I do, and those who are still feeling things out. I think it would, as my mother so assuredly pointed out, give the full picture of what we, as black women are going through when it comes to coping with illnesses and maybe give some women a link to the resources needed to become a little healthier or at least to know where they can turn when they need someone to talk to... Given that... I have a lot of work to do!