Dignity comes from within. People who do not know what it’s like to have severe cognitive issues, balance problems, etc. cannot relate to how we feel, period. They don’t have to. The change has to come from within. When I gave away all of my stiletto heels something died inside of me. I wasn’t self absorbed or shallow but I liked my heels. They were an expression of my personality. I thought I hit rock bottom when I traded my shoe collection for a pair of AFO’s decorated with lilac butterflies. In fact it was only the beginning of my downward spiral into the dark abyss of self-loathing and pity.
My career as a Family/Mental Health Counselor was a great source of self satisfaction. People relied on me and knew that I was as good as my word. In both our church and community, my family was known as one who accepted challenge and thrived on service. My self-esteem was tightly bound to my professional and personal success. A people pleaser, “no” was not in my vocabulary. My husband, Rick, was proud of me for my accomplishments. Our home was the neighborhood hub of activity and service.
As long as relapses were mild and short lived, I adapted. It took a great deal of effort to “look so good” (Haven’t we all heard and winced at that patronizing remark?) My first neurologist and the only one I ever trusted once observed, “You are a patient who has no complaints and dresses up for doctor appointments to convince both of us that you aren’t sick.” When RRMS turned into Secondary Progressive I began to lose my place as the matriarch, organizer, confidant and center of my busy home. My life was over as far as I was concerned.
After my recovery I was again in uncharted waters. It took a couple of years to convince myself as well as my family that my value transcends the limits of my physical body. In learning to adapt to progressive disability I forgot that I always had options but chose to dismiss them. Lost in Cog Fog Hell, I lost respect for myself therefore didn’t deserve it from others. In my mind I became an unwanted burden to friends and family as I could contribute nothing of value. It is a self-made trap that we cannot afford to stick our heads in. My favorite saying is, “Be who you are and say what you want because those who matter don’t mind and those who mind don’t matter.”
After a rough new beginning I am stronger, older, wiser and less concerned about what people think of me. My life has come full circle. In a better place and taking the road less traveled, I don’t fear the future anymore. We are all better than that.