Lately I've been thinking a lot about my identity. For most of my adult life, when I have met new people, one of the first questions asked is "What do you do?". Over the years I have answered with my job description or title including everything from Student, Sales Associate, Administrative Assistant and Operations Officer to Wife, Mom, Volunteer, Student (again), and Library Manager. Today, I am still a Wife and a Mom and while my joy and pride in those aspects of me are still full, my abilities have changed and there are limitations to some of the things I can do.
In the past year I have had to give up my new home (in CO), my new career, my ability to speak and to do simple tasks. I need help with many of the things it takes to get through a regular day now. In some cases, I have just made adjustments like drinking through a straw, buying silverware with bigger handles, buying the "zipper" style ziploc bags instead of the pull apart, and buying shampoo and conditioner bottles with pumps on them rather than squeeze tops. For me, these things are not invasive and allow me to continue to do the simple things that are so easy to take for granted. However, there are other things that require me to ask for help. This is such a challenge for me because I am not used to needing or asking for help. Fortunately, I have someone on hand who is willing and able to help with anything I need. The problem for me is needing to ask.
I have always been independent, strong-willed (stubborn), and yet adaptable to change. I love to learn, to get lost in a story (real or imagined), and to sink my teeth into a good project. I like to work, to drive, to talk, to eat, and to be social. I like to cook, to walk, to travel, and to swim in the ocean. These are all a part of who I am, but as some of these things slip away from me, I feel that I am losing pieces of myself, that ALS is stealing my identity piece by piece.
Then, there are the things I have gained. Like my voice. Not the one I speak out loud with, that is quickly fading away, but the one where I write what I think and feel and I share the challenges and joys of living with ALS and being Chrystie who is now also known as Sam. The voice I am using to make others aware of what ALS is and what we need to do together to help find the cure! I am by no means a professional writer, but I try to write from my heart and share just enough without sharing too much and truth be told, I love it!
I could sit by and let ALS rob me blind, so to speak, stealing all that I have left of who I am OR I can adopt a new identity for who I am today, incorporating the part of me that is ALS with the person I have always been. The decision is easy.
I am Twysted Sam.