Dignity Does Not Mean Denial

One of my running themes seems to be living with dignity. A large part of that is my appearance. In my mind, if I look sick, then I'll feel sick. I'm not in denial. I know I'm sick but a great deal of feeling sick has to do with my mental state. There are days when I feel down or blue but not particularly sick. My grandmother used to call it "having the blahs". Those are the days when I have to be very careful. If I give into the blahs one day, then I'll give into the blahs another day and that's pretty much quitting. There are other days when I just feel wrecked. Again, on those days, I must be very careful. If I don't give into the wrecked days and rest, my body pays for it. Control comes from paying attention to my body.

Just as looking sick makes me feel sick, looking good makes me feel good. In the beginning of my illness, while I was recuperating from surgery, I was careful to maintain appearances for Tom. Though at the time, he was only eight, he was sensitive and picked up on my fear and tension. He's an old soul and he has the gift (or the curse depending on your perspective) of empathy. I hid a great deal of my pain and illness from him for a while. But, I didn't hide it very well. He knew something was up! So after some discussion, Charlie and I checked Tom out of school and we took him with us to one of my cancer center appointments. He saw everything! He met the receptionist, made friends with the volunteers, watched the lab techs take blood, saw other patients while we waited to see the doctor and he met Dr. Barnes. In this day and age, it's rare but after examining me, he took the time and sat down and answered every question Tom had. And, I do mean all one million questions... Is Mommy going to die? How can you help her? Why do they take blood? Will I get it because Mommy has it? (That last one still gives me pause today because we just don't know...). We included Tom in my journey. By doing so, we took the mystery out of it for him and he no longer had to fear the unknown. After that, when I had an appointment at the cancer center, he wasn't as afraid or nervous. He could close his eyes and picture where I was and what was happening to me. The honesty of including Tom took a weight off of me. I wasn't hiding anything from him, I didn't have to watch every word I said for fear he might overhear something, and we as a family weren't in denial about the situation. Some might say he was too young but knowing Tom, the fear he had of the unknown was so much greater than the reality of our situation. One friend of Tom's overheard his mother discussing the fact that I was sick with another woman. The boy later got mad at Tom for one thing or another and cruelly told him that people who have cancer or go to cancer doctors die. Thank goodness we had included Tom in the reality of my illness! He was able to defend himself and set the boy straight without having to doubt himself or me!

Caution: Living with dignity and fighting with dignity does not mean living in denial. The most important thing you can do is be honest with yourself and your doctor. In an earlier post, I mentioned that Dr. Barnes was friends with my mother. After several months of appointments, Mom and Dr. Barnes spoke on the telephone regarding a business issue. At the end of their conversation, he asked how I was doing. Mom said I was doing great and Dr. Barnes felt like I must be doing well because I looked great at every appointment. Mom agreed and felt good about it. She called to let me know that even outside of the cancer center, Dr. Barnes cared. I appreciated the thought but I was upset. I told Mom, "You know how hard it is for me to "look great"." Mom didn't follow so I explained. With a fever, joint pain, and stomach issues, to roll and style my hair, put makeup on, iron clothes and choose accessories then paste on a cheerful smile cost me tons of energy. I would literally collapse at home after an afternoon at the cancer center. On top of that, I was throwing up on a regular basis. On the way to Montgomery, several times a trip, Charlie would pull over on the interstate for me to throw up. I kept a bottle of water and mouthwash with me at all times to freshen my breath. I took an extra outfit in case I vomited on the first outfit. I would repair my makeup so that the tears and sweat that came while throwing up would not show. All my "living with dignity" was masking my reality and the doctor didn't see past it. For some reason I get in a doctor's office and try to appear chipper. Learn this lesson from me: Your doctor needs to see your reality. They need to know how bad you feel and how often you feel bad. That doesn't mean you have to complain or moan and groan and carry on. Just tell the doctor what's going on. I finally told Dr. Barnes my theory that looking good equals feeling good. He agreed. He's seen very, very sick people with positive attitudes survive longer than expected. He's seen negative people die more quickly just because they give up. But, now Dr. Barnes knows, at least in regard to me, that you can't judge a book by its cover!