I just finished watching a TED speech by Aimee Mullins about being labeled “disabled.” For those of you who are not familiar with Aimee, she was born without some of the bones in her lower legs and feet, and as a result her legs had to be amputated just below the knees at a young age. During the TED talk, she read the entry for ‘disabled’ from a 1980’s thesaurus, which included words like ‘useless’ and ‘mutilated.’ She went on to redefine the true definition of disabled as having a crushed spirit and losing hope. Aimee has never allowed her condition to do that to her.
I write this after having spent most of today in bed. As I have mentioned in my previous posts, I have been sick since the beginning of July. What started out as fatigue and memory problems has progressed to wide-spread pain that can involve almost any part of my body. Today my stomach and the outside of my right leg have been taking their turn. My stomach hurt so bad that I was curled up in bed in the fetal position for most of the morning, unable to even watch TV. It seems like I am getting closer to a diagnosis, though even that is a shallow victory, because most of the diseases that are left could leave me with symptoms like this for the rest of my life. My life is definitely changed, and in many ways, not for the better.
After hearing Aimee’s talk however, I no longer think of myself as having a disability. Sometimes it feels as if my spirit is beginning to crush under the weight of all that I am dealing with. Yet, hope is still there. Not hope that my life will go back to the way it was before all this started to happen, because my life will never be the same again. Being sick has changed me, and continues to do so. Even if I got ‘better,’ my life will never be the same. I now know what it is like to be sick with an illness, and not know what it is. I know what it’s like to not even be able to plan for the future, as I have no idea what my physical abilities will be like. I will never lose these experiences. They alone have changed me forever.
I am sick, but I have been given a gift. I can identify with my patients that have been in this situation, I know what it feels like. I realize how frustrating it can be to be stuck in bed all day long when you have so much to do. I know what it’s like to be teetering on the edge of giving up hope for the future. And, I realize that although my body is broken, my spirit can still live on, and even stronger than it was before. Suddenly, my life is an open book. I no longer have a pre-defined path that I am on. My new challenge is to figure out how to redefine my life, keeping in mind whatever limitations my body may have from now on. I am not disabled; my value, worth, and dignity are still intact. I am still full of potential. I am still human.