An honest look at a life with disease…
I have a reputation of being very private about the way this disease affects my life. I own a water bottle that reads “I have MS, but MS does not have me” and although I am not a fan of advertising my attempt to use positive thinking as a means to survive this disease, there is a lot of truth in that statement. There is indeed a lot more to me than having MS. But, one of the primary reasons I want to blog, is the mere fact that having MS affects almost aspect of my life, as does living with any disease. I have no intention of bringing awareness to Multiple Sclerosis, or any specific disease for that matter. Instead I am endeavoring to leave the fluff behind, and get honest about how much being less than healthy can affect the lives of those living with disease, those-living-with-those-living with disease, and others who are directly affected by disease.
Conquering my privacy issues (also sometimes call denial) will be a challenge for me. Number one, I don’t particularly enjoy exposing my weaknesses, because as my momma always told me, “Don’t air your dirty laundry…it sticks.” Number two, I don’t receive sympathy well. Frankly, I don’t like others feeling sorry for me or worrying about me. And lastly, I’ve learned that most healthy people cannot handle the truth in illness. Either they want to be a “fixer” of the problem, heaping solution on top of solution, or, they ask questions out of a feeling of obligation, but neither listen to the response, nor care about the problem. But, my sister gave me some great insight, she said, “Sometimes we just need to tell someone what we’re going through or else it stays inside and eats away at us internally.” So I’ve decided to go against all of my instincts, and not only “air my dirty laundry”, but also, my diary of a disease.
Disease and illness are very private matters, that are too easily made public in the form of disabilities and limitations. For some, like me, the disease presents itself in ways that are easily hidden, and when they are not, we go to any means possible to hide them. For others, living with a disease is a battle that they are determined to conquer, and they wear the wounds proudly. Each method is personal, each method is natural, and our methods might change as the course of illness changes. But, to give a visual, having MS (or any disease I imagine) is a bit like being in a race with everyday average people of similar age, average ability, and basic running shoes, but the one dividing factor, is that some of us must run this race on a separate track along side everybody else, and our track is full of quick sand. All of the positive mental power and will power in the world will not turn that quick sand into turf. And this is why I’m compelled to write. Because the question remains, how do we participate in a race we clearly cannot win? How can we continue running when we are surrounded by people who can easily do the thing we are trying to do, but with a whole lot less effort? How do we keep from throwing our hands up and screaming “this isn’t a fair race!” I don’t have an answer. The only things I possess are a voice to tell people like me I know what it’s like to run in quick sand, and a message to tell those running on the smooth turf beside us that there is a clear emotional chasm between us in the shape of a huge elephant named disease, and we need to acknowledge it and create a bridge of understanding between us.